I know, it's been a long time since I wrote -- almost a month if you discount the last blog that basically was just a short 'i'm home' notice.
I most definitely want to wrap up my experiences in South Lake Tahoe (SLT) and get you up to speed. It's my sincerest hope that some of you readers can use the information I have blogged about during this journey to help themselves or someone they love. Aside from trying to keep my family & friends updated I hope that maybe a few FM folks will find some hope from my journey.
When I left off the last time I was not doing so well. I was having many gynecological problems and was feeling super fatigued. Not long after posting my last blog (#17-The Downward Spiral) my menstrual bleeding stopped. It was a big relief although I still am no closer to understanding why that happened.
I began iron therapy again (well, upped my current therapy) and continued on w/ the clinic. My neck was moving very well and I was having minimal pain -- very minimal. To give you a contrasting example, before I started treatment I might need 4-5 Lortab each day, 1-2 Percocet, and many Flexeril. I was now down to taking 1/2 of a Lortab usually at night. For whatever reasons, either my arms or legs start to 'bleed' pain. That means the pain starts up high on the arm or leg and it starts to spread downwards in what feels to me like a blood pattern. I tried very hard to not take the 1/2 Lortab -- trying Advil and Bio Freeze to see if I could get by but they didn't cut the pain.
At first I was disappointed with this but then I realized 'hey, if I only need 1/2 a Lortab once a day I'm doing *a lot* better' -- this is a situation I can deal with for the rest of my life. My sleep was getting to be quite good w/ the exception of if I woke up to the arm or leg pain and so I just decided to take the 1/2 Lortab when I went to bed so I could maximize the possibility of sleeping through the night. I never got there but I got close -- sleeping until 5-6 AM.
My fatigue still did not improve and that depressed me greatly. Despite all the reassurances of my doctor (and family) I felt like a failure that I was at the end part of my treatment and I was less full of energy than when I first came there. Again, there are so many factors as to why I was fatigued: anemia, low bloody supply, and the theory of the para-sympathetic nervous system. I think I've explained the latter before but just in case, here is what I mean. When you have FM, your sympathetic nervous system goes into over drive and has a lot to do with all the phantom pain that you have (note: it feels real just like any true pain but it's actually not pain from a real source (i.e. - muscle strain, muscular illnesses, etc.) -- it's just the FM telling your brain that the body hurts here, there, and over there. As I got closer to ending my treatment, my sympathetic nervous system shut down to the appropriate level and my para-sympathetic was allowed to function normally again. That is great news in terms of FM. When the para-sympathetic starts working again, it does sorta a 'systems check' and realizes 'holy shit, this person has not had proper sleep or rejuvenation for a long time' and it then begins what I call 'hibernation mode'. The para-sympathetic wants you to rest once it sees that you've been down and out for a while and so I started to feel sleepy/tired all the time. My doctor was actually thrilled to hear this, along w/ my progress on the neck, my titration off my pain meds, and my minimal pain; as this means the messages to my brain are now the correct ones.
You'd think I'd rejoice at hearing that but instead I felt depressed. I didn't hurt much at all anymore and there were so many things I had wanted to do while in SLT after I got myself back in better health but now I was just too tired to do anything. I often could not sleep so I would lay on my bed and listen to music for hours. You have to understand that with my neck limitations, I can't do a lot of reading in a comfortable manner. I cannot lay on a pile of pillows to read nor can I squish myself down on the couch to read -- I have to keep my neck in a neutral position and as soft as possible. So reading has now become something I'm not as excited to do anymore because I have to sit stick straight up on the couch or in bed. I'm hoping my husband, J. , will figure out some sort of device that allows one to read laying flat in bed. . he's good at stuff like that.
August turned into September and I really started to feel the pull of depression. Not the usual but the profound, dark depression. I wasn't that surprised since it's happened every fall for the past 3 years but it did compound my fatigue and overall feeling of wellness. I have started several things to try and avoid a complete relapse in depression (meaning titrating back up to 200 mg of Seroquel per day, which means way less of a way to lose weight). I also started taking Vitamin D, made sure I was in the sun w/ my eyes open for at least 15 minutes per day, and started to take 100 mg of Seroquel.
I had fully intended to stay until September 20th but after Labor Day weekend I felt like things were coming undone at home and I became more and more agitated to get back to NM. It's very common for the people who are left at home to crash because not only are they carrying the weight of responsibility at home, but they also are worried and are not in the daily loop of the patient's recovery. Thus, I sent my mom home in early September to go and help J. out because I could tell he was becoming very despondent and needed help (physically and mentally)--he needed some of his family home, too. Looking back I feel selfish that I had my mom stay because J. needed support during this time as much as I did.
After my mom left things just didn't feel right. It was like the air in SLT had changed. On Monday, Sept. 8th, I went to the clinic and was in tears because I was homesick and wanted to be home *now*. My doctor was very sympathetic and we discussed it for a long time. At this point I was achieving wellness in the high 80%'s. We both had wanted me to stay until I was in the 90's but we both realized that with my mental unhappiness I was probably doing more harm than good there so I was allowed to go home.
Trust me on this, I did not waste any time. I flew home the next day. It was weird. I have been virtually around a family member 24/7 for 3+ months and here I was flying home by myself. It did me a lot of good to have that experience. Yes, I wore the horrid neck brace on the planes and in the car on the way home. It's just one of the compromises I'm willing to make in order to stop having full blown FM again.
I loved being home. There were rain clouds, thunderstorms, rain, hummingbirds, and my yard and gardens were still in summer mode. The first night at home I slept w/ the window open so I could hear the crickets and I have often looked outside at the stars, as we couldn't see them in SLT.
But as with all things in life, the newness wears off. I really did start off on the right foot. The very next day after flying home I kept to my new schedule which was:
-get up around 9:30 (I know this seems late to some of you but for me that is early)
-complete my 3 at home chiropractic treatments (spread out through the day)
-eat my 18g's of protein in the AM
-get dressed, brush teeth, etc.
-take a walk -- usually up to Starbucks
-eat my lunch's 5% of protein
-spend the afternoon doing things around the house, doing something fun, or resting
-eat my late afternoon 5% of protein
-be up and awake when J. got home from work
-decompressing after the day's end (watching TV, doing stuff at home, taking another walk, playing w/ the babies, etc)
-stretching and meditation before bed.
After Wednesday I thought that I had things on the right track and that this wasn't going to be hard to do. Then I got the flu. Not surprised really since 3 people I spent the most time with in Tahoe had it before me. I spent Thursday through the beginning of the following week in bed.
For normal folks, this would be a temporary set back and when you felt better you'd go back to your new routine. For me, it wasn't that easy. I do not know why I have a hard time trying to get back onto the treadmill of life but I just do not have the grace or the agility to do so. . being sick for that many days set my pattern of life and I am bummed out that I am still not back to where I was when I first got home.
My mom and J. had a brilliant idea of making a list of the minimum things I had to do each day even if I was sick as a dog. That left me off the hook on days when I felt bad. Basically it included:
-brushing my teeth
-eating my protein at the designated times
-sitting outside in the sun w/o sunscreen (and eyes open) for 15 minutes
-completing my daily chiropractic home treatments
So that gets me caught up to here and now. Since I recovered from the flu, I've definitely had more 'minimal' days then full ones. It's been extremely frustrating. I so badly want to do stuff but am just zapped with no energy. There are the rare days that I do have energy and when those come I know I overdo it. I know that's not the smartest thing but I never know when the next good day will be so I want to spend every waking hour doing the things I want to do.
I had started to lose weight when I got home. I just stopped being so hungry all the time and was in more control of my appetite. I lost several pounds until last Sunday. Never ask your husband to get you a donut from the bakery, at least not in LA. The bakery was closed so he bought a dozen donuts from the store and I fell back into my sugar haven. Since then I have been craving sweets again and I know I have put back those pounds that were off for a few weeks. I will get this weight off eventually but it is taking a back seat to trying to establish a normal routine and be healthy.
It's been almost 3 weeks now since I came home and despite all the setbacks I listed above, there are some improvements or movements towards reclaiming my health. I do walk--not enough as I'd like but am getting 2-3 days a week in with walking. I also sought out a chiropractor here to help me w/ the outpatient adjustments from leaving the clinic in SLT and found a great lady here in LA who is going to treat me as my doctor in SLT wishes. She has no crappy doctor ego and is excited to help. I got my first exam this past week & was so impressed with her.
I've also set up my massage therapy. I'm blessed to have one of my best friends here as a LMT. I didn't go to her because knowing how giving she is, she probably wouldn't charge me -- at least not the full price and I don't feel good about that. . it's not right for me to take advantage of her kindness. So, I started to go to a lady that I've known since childhood and had my first massage yesterday. She was so cool -- spent about an hour talking to just get an idea of what to do and to also ask some of the FM tricks of the trade. Apparently when I was setting up my massage needs here, I told her a tidbit about pillows and how to use them so that they don't cause headaches. I guess she had started to have headaches a lot and so she tried the pillow trick and her headaches were gone. She gave me an 1.5 hour massage and was very intent on doing what I felt was correct and it was one of the best ones I ever had. Afterwards she refused to let me pay for it citing that the hour she spent with me was better than a $1k Continuing Ed class. She also told me that we'd have to look at finances because she saw what my doctor in SLT wanted me to have and she knows that is a lot of $$ for massage.
I was blown away by her kindness and her desire to learn about FM. I am going to try very hard to pay that forward. I had already given both her and my chiropractor here my phone number and told them that I'd be glad to talk to any FM patient so I hope I can spread the word on this new treatment.
I've also decided that now is the time to work on many of my mental quirks. If you know me personally then you know I do suffer from several mental ailments. I'm extremely OCD, I have awful General Anxiety Disorder (GAD), and suffer panic attacks a lot. I am realizing with each passing day that I need to learn how to handle these things better because I believe a lot of my FM is triggered by these items and also because I know that I hurt people around me when I have an episode, as it comes out as anger most of the time.
So, like it or not, I got the name of a good therapist in Santa Fe. She is into new age stuff so that jives with me and I hope she can help me. I've been through a ton of Cognitive Behavioral Therapy (CBT) since the early '90's and have had mediocre results. So what has changed? My desire to not be that way anymore. My belief that my reactions to stress and OCD cause me to be sick. My hope that this is the time for change, that the FM journey in SLT is the thing that can make me be strong enough to try *very, very* hard to stop these patterns of behavior.
In addition to getting a new counselor, I also am going to meet w/ my primary doctor here and re-assess my medications. I'm not sure my anxiety meds are working as they should. I realize that meds can only do so much but I have read many studies that indicate that using meds and having CBT can have high success rates.
Along those lines, I realize that this journey isn't all about being physically well, it's also about being mentally well. I'm currently reading a book titled "Healing Your Life" by Lorraine Hay and it is really good. It is all about changing your thought patterns and old belief systems to make you at peace with life. Her theory is that if you can learn to love yourself then you will find that it's easy to get back on life's treadmill and that it can have you moving through life at the pace that you are supposed to. She believes whole-heartedly in letting the Universe handle life and you just submit to it and learn to start thinking positively and let life flow the way it is supposed to.
I don't believe in coincidences and I know that I am on the correct path spiritually right now. Why? Well, the book I just spoke about cites another series of books called "A Course In Miracles". It just so happens that about 7 years ago a friend bought me a beautiful set of these books. I was so busy with the rat race of life that I never studied them although they have a permanent place in my library. Just hearing her talk about "A Course In Miracles" made me realize that I have those books for a reason and that it will be my next reading adventure. Did I also mention that Billy Corgan cites "A Course In Miracles" as one of his all time favorite books and gives credit to it for many of his spiritual beliefs? That alone should make me want to read it. . but for now my mom is going to read through it (it's huge) and then when I'm ready I will start it. The last part of my 'no coincidence' day yesterday was that the other book that was mentioned was "The Secret" and guess what? My best friend in LA gave me a copy of it on CD this past Yule. I've been screaming out to the higher power to help me change my life for the better and to help me find it within myself to get back on track and I believe these are the tools to help me along.
One aside that makes me want to cry because it is so sweet is that J. is going to read the books with me. Every few nights we're going to read a chapter together, out loud, and do all the exercises. That means the world to me. He's willing to sit and listen just to help me and that says volumes (no pun intended). I like to think that he will benefit from them, too.
How is my pain now that I'm no longer in treatment? I won't lie -- it's not as good as I described above but it's tolerable and I can live a full life like this. I usually take 1/2 a Lortab at night and usually need another 1/2 during the day. Occasionally, when I am having a particular sore spot, I take a muscle relaxant (Flexeril). However, *in no way was the SLT treatments a letdown*. Do not get me wrong -- I would never be down to 1 pain pill per day if I had not been there and I also learned so much from the clinic about myself in many aspects: physically taking care of my body (particularly my neck), nutrition, controlling stress, the benefit of walking as a means of exercise, and being given the gift of virtually no pain.
My sleep is not as good as it was in SLT but a lot of that is due to my environment here. I am extremely allergic to sage and mold -- and we have lots of mold due to all the rain and sage starts blooming around this time. Thus, I wake up most nights because of allergies. I also am not used to sharing a bed with anyone but my Mojo kitty, so I am learning to deal with cats laying on me and a snoring husband. We did just purchase a brand new king sized bed so I hope that alleviates a lot of the issues. Obviously it didn't work tonight so well as I have been up since 2:30 but I've suffered from insomnia for so long that I am not going to stress about it. I'm trying to just go with the flow.
When I went to SLT for treatment, I didn't have high expectations and to be 85%-90% better is more than a success, it is truly a miracle. After all, who is 100%? I'd venture a guess that not many people are. . and I can live with 10-15% illness. I can easily live with that and have a life that is worth living.
So that's it. . that's where it ends--in terms of the treatments in Tahoe, but that isn't the end of this journey at all. In fact, I'm just at the starting point. I now have to integrate all these things into my life. I am trying to see this as my 1 chance to make big changes in how I live my life and although many days you will find me down in the dumps and not hopeful, I still very much want that to happen. I'm not giving up but am trying to take it day by day.
I will continue this blog if people are reading it. I will continue to post my steps forwards and backwards here until I see that no one is reading the posts.
For those of you who started this journey with me, or those who came in during the middle of it--*thank you*. I don't know who any of you are but maybe a few who have emailed me but I feel a huge amount of support and I am grateful to all of you who read this blog (which always has long entries) and hope I can be a support to each and every one of you someday.
l_l
Friday, September 26, 2008
Saturday, September 13, 2008
Blog#18--Short Update
Sorry for the long delay.
Long story short -- I terminated treatment this past Monday (9/8/2008) and flew home the next day.
I will explain in a full blog later but please note that I did not leave treatment early because it stopped working for me. Quite the opposite. I was at a plateau at about 85% wellness and due to a crisis at home the dr. decided that it was in my best interest to go home.
I'd say the 2nd day home I was at 90%+ but then caught a rotten cold/flu from my mom so have been in bed for 3 days now. However, my pain is little to almost none.
Thanks for always caring about my progress. I will update as soon as I get caught up here at home.
l_l
Long story short -- I terminated treatment this past Monday (9/8/2008) and flew home the next day.
I will explain in a full blog later but please note that I did not leave treatment early because it stopped working for me. Quite the opposite. I was at a plateau at about 85% wellness and due to a crisis at home the dr. decided that it was in my best interest to go home.
I'd say the 2nd day home I was at 90%+ but then caught a rotten cold/flu from my mom so have been in bed for 3 days now. However, my pain is little to almost none.
Thanks for always caring about my progress. I will update as soon as I get caught up here at home.
l_l
Tuesday, August 26, 2008
Blog#17--The Downward Spiral
So yep, I'm borrowing the album title "The Downward Spiral" from Nine Inch Nails. Kinda ironic because I used to love that album but now I don't listen to Trent Reznor anymore since he has bashed the Smashing Pumpkins every chance he gets.
I'm warning you up front that this is *not* a happy blog. I'm mad, angry, hurt, ashamed, and scared. I will try to explain.
As in my previous blog, I mentioned about my vaginal bleeding. Well it has done nothing but continue to get worse. Last Thursday night I spent about 7 hours in the local ER because it had turned into hemorrhaging and it was so profuse that it was scary.
In the past few weeks I've had 2 exams by OB/GYNs, xrays of my lower pelvic area, internal and external ultrasounds on my uterine lining/ovaries, had blood work done and nothing was found to be the cause of it. The doctors have gone back and forth over and over again putting me on additional hormone therapy, taking me off of it, and putting me on it again so my body is terribly confused.
I think I've already mentioned before that I am almost always on the verge of anemia and don't have enough blood in my system. From all I've read & heard, the endometrial (sp?) lining continues to absorb more blood from your body if it doesn't get enough of the right hormones. I was kinda shocked to hear that, as I just thought I was shedding 3 months of menstrual blood but I'm not. . it's always fresh blood and my closest way of describing it is that the endometrial lining is like a sponge and unless told otherwise, it will continue to absorb blood from your body and whenever gravity takes effect, it bleeds out and starts the process all over again. To me, this says that I'm losing blood and rather rapidly but the doctors refuse to even consider that I may be starting menopause. It's not secret that FM patients and those with Polycystic Ovary Syndrome (PCOS) go into menopause earlier than most and my sister started having trouble around my same age.
Today I went back to the first OB/GYN I dealt with and she told me that the best way to determine what hormone your body needs (it's not always estrogen, sometimes you need progesterone, too) is to look at the endometrial lining via the ultrasound. I may have this next part backwards but you get the point: if the lining is too thick you need more estrogen and if it's too thin you need progesterone (I may have that backwards). . but when I left her office I was told that she'd know exactly what to do when she read the ultrasound report and saw the pictures.
About 2 hours later, she called and said my lining was neither thick nor thin, just 'average'. In other words, she doesn't know which hormone I need and she insists that blood work to test these levels would be off due to all the hormone therapy that's gone on over the past few weeks (and I grudgingly think she is correct on this one). So I try additional hormone therapy until Friday and if the bleeding doesn't recede I will have to have a D&C procedure. In a nutshell, they put you out and scrape the lining of the endometrial wall to stop the bleeding. However, I am skeptical because if it keeps refilling itself up w/ blood, what good will the procedure do?
One of the biggest scares is that the absolute worst thing for me right now concerning my FM progress is to have surgery. Surgery is blamed to cause a high percentage of FM cases and I'm sick about this. I'm finally in the low 90 percentile of wellness and I do not want to have a set back. I cannot afford to stay at the clinic longer if my neck gets messed up.
I explained this to the OB/GYN and she said that I have a high pain tolerance she can not put me totally out and avoid being intubated. That worries me because I think I have a very low tolerance of pain due to my FM and the last time I had the 'conscious anesthetic' I was very much awake and kept asking for more meds due to the pain. But her and her infinite wisdom says that is the route to go.
If you haven't figured it out, I do *not* like this woman. However, she is the only one in South Lake Tahoe (SLT) that takes my insurance and she's the only one who has hospital privileges at the hospital that accepts my insurance.
My other big beef is that I don't think the D&C will help me in the long run. I think it may stop the bleeding for a while but my gut feeling (which is usually right on the $$ in terms of my health) is that it will start again and I will need to have a hysterectomy. I've tried asking all the OB/GYNs here that if I have to have surgery at all to just go ahead and remove all my parts. It doesn't matter to me since I can't have children, already have my tubes tied, am taking hormone replacement therapy via my BC pill due to PCOS, and am sick of bleeding. My bigger concern is that my maternal grandmother may have died of ovarian cancer so I want all of it gone if I have to have surgery anyway. (the reason I say 'may have' is that my grandma had surgery a week before she died and they found cancer near her stomach lining and also noticed that one of her ovaries was the size of a grapefruit. She had a hysterectomy 30 years prior so they were not sure where the cancer originated -- either the stomach or the ovary. I asked for an autopsy but that was not what my grandma wished so it wasn't done). .
My mom had a good point and that is that my insurance probably wouldn't pay for a full hysterectomy until I'd tried all other means of stopping the blood flow. That's right -- insurance cluster fuck. So I may have to have several D&C's until they finally allow this to happen.
So I'm stressed out, scared, and feel very alone. For reasons I don't wish to discuss, I am very cut off from everyone--my parents and J., too. Today I had to handle all of this on my own. It'd make even a normal person upset but when you add in the FM, it's too much to take.
I'm just hoping beyond hope that the bleeding stops by Friday and that this is an isolated incident. However, I still wonder what I will do if I have started, or will start, going through menopause. I want my parts removed for the sake of not getting cancer.
I realized today that I am so dependent on others and it makes me sick. I was brought up to take care of myself no matter what and I've failed that miserably. I can't provide myself w/ $$, J. pays for my insurance, my parents are paying for most of the treatment here, and I barely have enough $$ for food. I've kept my minimal savings since I quit work almost 2 years ago but that cash flow doesn't keep moving -- it can only go downward towards zero as I have no $$ to replenish it. I also know I am a burden in the regard that my parents and J. have to take care of all the house stuff and that I cannot even think about helping out for over a year. All of them are on edge and I don't blame them.
I seriously do not see why they stick around. I have nothing to offer any of them. I'm sick w/ FM and will have to battle that every day for the rest of my life. This means I may never be able to work again because I can't keep consistent hours due to FM and also because I have to spend so much time during the day to keep it at bay.
All I have to offer now is being a lump in the bed of the motor home and that lump ain't offering anything helpful to anyone. Not for lack of wanting but due to my physical limitations.
It was also brought to my attention today that I need to 'deal with my panic better'. Dear Whomever In Heaven -- I *am* trying. I've had panic attacks and severe anxiety for over 15 years. I take my meds every day (if I skipped meds, I'd be crucified by my family but the same isn't true for them), I've taken tons of cognitive behavioral therapy over the years, and yet I'm being asked what else I'm going to do to stop that.
I'm not sure how to explain this to all of you who are 'normal'. There is a limit to what I can do to stop my mental health issues from being a problem in my life. Drugs only go so far, as well as therapy. You add the pain/stress from FM into the mix and I just can't deal sometimes and I get panicked and lose my cool. Is this okay? *NO*. . but I don't have any other way of dealing with it.
Actually, that is not true. I've decided that when I've caused grief, pain, burdens, or hurt due to my emotional state, the best thing I can do is to cut myself off from people for a while and internalize the panic. No, this isn't healthy but I have no other options at this point.
So if you don't hear from me, don't be offended. I am in full hermit mode right now out of pure necessity to keep myself together & to avoid hurting those I love the most--which I definitely did today. I hate myself for not having full control over my emotions but does anyone have total control? Maybe they do and I'm just a fucking freak. . that's probably closer to the truth than anything else.
For those of you that I hurt or upset today, I'm sorry. I can't go back and fix it. I've made a decision of how to best stop any additional trouble to those I hurt today during my panic attack. I just wish people could understand how hard an anxiety disorder can mess w/ you mentally and physically. But I know that only my actions will make things right so that's why i'm going to take some time off from my so-called public life.
Thank you for listening to this rant and please know that if I hurt you, I'm terribly sorry. There is never an excuse to hurt another person's feelings and I'm sorry for all the pain & trouble I've caused. I wish I were a better & more evolved person.
l_l
I'm warning you up front that this is *not* a happy blog. I'm mad, angry, hurt, ashamed, and scared. I will try to explain.
As in my previous blog, I mentioned about my vaginal bleeding. Well it has done nothing but continue to get worse. Last Thursday night I spent about 7 hours in the local ER because it had turned into hemorrhaging and it was so profuse that it was scary.
In the past few weeks I've had 2 exams by OB/GYNs, xrays of my lower pelvic area, internal and external ultrasounds on my uterine lining/ovaries, had blood work done and nothing was found to be the cause of it. The doctors have gone back and forth over and over again putting me on additional hormone therapy, taking me off of it, and putting me on it again so my body is terribly confused.
I think I've already mentioned before that I am almost always on the verge of anemia and don't have enough blood in my system. From all I've read & heard, the endometrial (sp?) lining continues to absorb more blood from your body if it doesn't get enough of the right hormones. I was kinda shocked to hear that, as I just thought I was shedding 3 months of menstrual blood but I'm not. . it's always fresh blood and my closest way of describing it is that the endometrial lining is like a sponge and unless told otherwise, it will continue to absorb blood from your body and whenever gravity takes effect, it bleeds out and starts the process all over again. To me, this says that I'm losing blood and rather rapidly but the doctors refuse to even consider that I may be starting menopause. It's not secret that FM patients and those with Polycystic Ovary Syndrome (PCOS) go into menopause earlier than most and my sister started having trouble around my same age.
Today I went back to the first OB/GYN I dealt with and she told me that the best way to determine what hormone your body needs (it's not always estrogen, sometimes you need progesterone, too) is to look at the endometrial lining via the ultrasound. I may have this next part backwards but you get the point: if the lining is too thick you need more estrogen and if it's too thin you need progesterone (I may have that backwards). . but when I left her office I was told that she'd know exactly what to do when she read the ultrasound report and saw the pictures.
About 2 hours later, she called and said my lining was neither thick nor thin, just 'average'. In other words, she doesn't know which hormone I need and she insists that blood work to test these levels would be off due to all the hormone therapy that's gone on over the past few weeks (and I grudgingly think she is correct on this one). So I try additional hormone therapy until Friday and if the bleeding doesn't recede I will have to have a D&C procedure. In a nutshell, they put you out and scrape the lining of the endometrial wall to stop the bleeding. However, I am skeptical because if it keeps refilling itself up w/ blood, what good will the procedure do?
One of the biggest scares is that the absolute worst thing for me right now concerning my FM progress is to have surgery. Surgery is blamed to cause a high percentage of FM cases and I'm sick about this. I'm finally in the low 90 percentile of wellness and I do not want to have a set back. I cannot afford to stay at the clinic longer if my neck gets messed up.
I explained this to the OB/GYN and she said that I have a high pain tolerance she can not put me totally out and avoid being intubated. That worries me because I think I have a very low tolerance of pain due to my FM and the last time I had the 'conscious anesthetic' I was very much awake and kept asking for more meds due to the pain. But her and her infinite wisdom says that is the route to go.
If you haven't figured it out, I do *not* like this woman. However, she is the only one in South Lake Tahoe (SLT) that takes my insurance and she's the only one who has hospital privileges at the hospital that accepts my insurance.
My other big beef is that I don't think the D&C will help me in the long run. I think it may stop the bleeding for a while but my gut feeling (which is usually right on the $$ in terms of my health) is that it will start again and I will need to have a hysterectomy. I've tried asking all the OB/GYNs here that if I have to have surgery at all to just go ahead and remove all my parts. It doesn't matter to me since I can't have children, already have my tubes tied, am taking hormone replacement therapy via my BC pill due to PCOS, and am sick of bleeding. My bigger concern is that my maternal grandmother may have died of ovarian cancer so I want all of it gone if I have to have surgery anyway. (the reason I say 'may have' is that my grandma had surgery a week before she died and they found cancer near her stomach lining and also noticed that one of her ovaries was the size of a grapefruit. She had a hysterectomy 30 years prior so they were not sure where the cancer originated -- either the stomach or the ovary. I asked for an autopsy but that was not what my grandma wished so it wasn't done). .
My mom had a good point and that is that my insurance probably wouldn't pay for a full hysterectomy until I'd tried all other means of stopping the blood flow. That's right -- insurance cluster fuck. So I may have to have several D&C's until they finally allow this to happen.
So I'm stressed out, scared, and feel very alone. For reasons I don't wish to discuss, I am very cut off from everyone--my parents and J., too. Today I had to handle all of this on my own. It'd make even a normal person upset but when you add in the FM, it's too much to take.
I'm just hoping beyond hope that the bleeding stops by Friday and that this is an isolated incident. However, I still wonder what I will do if I have started, or will start, going through menopause. I want my parts removed for the sake of not getting cancer.
I realized today that I am so dependent on others and it makes me sick. I was brought up to take care of myself no matter what and I've failed that miserably. I can't provide myself w/ $$, J. pays for my insurance, my parents are paying for most of the treatment here, and I barely have enough $$ for food. I've kept my minimal savings since I quit work almost 2 years ago but that cash flow doesn't keep moving -- it can only go downward towards zero as I have no $$ to replenish it. I also know I am a burden in the regard that my parents and J. have to take care of all the house stuff and that I cannot even think about helping out for over a year. All of them are on edge and I don't blame them.
I seriously do not see why they stick around. I have nothing to offer any of them. I'm sick w/ FM and will have to battle that every day for the rest of my life. This means I may never be able to work again because I can't keep consistent hours due to FM and also because I have to spend so much time during the day to keep it at bay.
All I have to offer now is being a lump in the bed of the motor home and that lump ain't offering anything helpful to anyone. Not for lack of wanting but due to my physical limitations.
It was also brought to my attention today that I need to 'deal with my panic better'. Dear Whomever In Heaven -- I *am* trying. I've had panic attacks and severe anxiety for over 15 years. I take my meds every day (if I skipped meds, I'd be crucified by my family but the same isn't true for them), I've taken tons of cognitive behavioral therapy over the years, and yet I'm being asked what else I'm going to do to stop that.
I'm not sure how to explain this to all of you who are 'normal'. There is a limit to what I can do to stop my mental health issues from being a problem in my life. Drugs only go so far, as well as therapy. You add the pain/stress from FM into the mix and I just can't deal sometimes and I get panicked and lose my cool. Is this okay? *NO*. . but I don't have any other way of dealing with it.
Actually, that is not true. I've decided that when I've caused grief, pain, burdens, or hurt due to my emotional state, the best thing I can do is to cut myself off from people for a while and internalize the panic. No, this isn't healthy but I have no other options at this point.
So if you don't hear from me, don't be offended. I am in full hermit mode right now out of pure necessity to keep myself together & to avoid hurting those I love the most--which I definitely did today. I hate myself for not having full control over my emotions but does anyone have total control? Maybe they do and I'm just a fucking freak. . that's probably closer to the truth than anything else.
For those of you that I hurt or upset today, I'm sorry. I can't go back and fix it. I've made a decision of how to best stop any additional trouble to those I hurt today during my panic attack. I just wish people could understand how hard an anxiety disorder can mess w/ you mentally and physically. But I know that only my actions will make things right so that's why i'm going to take some time off from my so-called public life.
Thank you for listening to this rant and please know that if I hurt you, I'm terribly sorry. There is never an excuse to hurt another person's feelings and I'm sorry for all the pain & trouble I've caused. I wish I were a better & more evolved person.
l_l
Wednesday, August 20, 2008
Blog#16--Parole Denied
Sorry again for slow posts. . I'm still borrowing a computer.
The past 2 weeks have not been so good. . and yes, despite my hesitancy to write about delicate girl subjects, I feel it is important to share this information for those women who find themselves in the same place. This applies not only to FM patients and could apply to healthy women as well.
In a nutshell, I started to bleed vaginally about 15 days ago. I'm on a birth control pill and I was nowhere near my cycle time. I've been on this pill for well over 5 years due to Polycystic Ovary Syndrome (PCOS). It's a bit ironic given the fact that I have had my tubes tied for over a decade now but w/ PCOS you need to have more female hormones in your body because otherwise you have nasty symptoms like hemorrhaging vaginally, facial acne, facial hair growth that ain't for girls, and a lot of pain and cramping. I also need the pill because I am low on my blood supply (due to past hemorrhaging periods) so I skip my period for 2 months and have a period at the end of the third in order to build up the blood in my body.
In the 5 years that I've taken the pill, I've never had a breakthrough bleed, so this alarmed me along w/ the fact that I am totally anemic and losing blood is not a good thing for me. I finally went to an ob/gyn here in Tahoe (who was and is a complete bitch) and I was diagnosed with a bacterial infection called 'gardnerella' & supposedly it was a potential cause of the bleeding. However, due to the FM and treatments it's not so clear if this was the reason for my breakthrough bleeding or not.
As usual, my case is so complicated no one really knows exactly what started this bleeding and it could be a combo of sorts. It could be the gardnerella, but it also could be that I was using homeopathic means to get rid of the candida overgrowth in my gut. This entailed drinking 2 types of Pau D'Arco tea (which is a strong herbal tea made of the bark of a tree), using oregano oil & applying it to my feet, my sacrum, and on my tongue, taking probiotics orally and via saline enemas (again, to coat the gut w/ good bacteria) and finally taking digestive enzymes. My point here is this--*be careful w/ homeopathic methods as they can be as dangerous as any prescribed drug*. Case in point -- Pau D'Arco tea can act as an anti-coagulant and that most definitely may have attributed to my bleeding. I am happy to share the various treatments with individuals but please note that I am not a doctor nor a naturopath so you must decide for yourself if these items are safe for you to use. Everyone is different.
Finally, many women are not aware of this but chiropractics can often cause women to have hormone fluctuations. I've seen many an older female patient start to experience hot flashes and other symptoms of menopause even if they went through it decades ago. I've also talked to patients that have started bleeding after a regular chiropractic adjustment. I believe that with the amount and intensity of my chiropractic treatments right now it's highly possible my body is re-setting itself and am regulating my hormones better now (i.e. - maybe I no longer have PCOS anymore).
Thus, the 3 things I want women--particularly those with FM--to know are this:
-vaginal bleeding that is abnormal could be caused by a bacterial or yeast infection and you need to get a swab test done to rule out this potential problem.
-naturopathic treatments for any disease, FM or not, is fine but treat everything you take as if it were a prescription med. Just because you can go to a store and buy an innocuous looking box of tea, it could have many contraindications with other meds you may be taking or just plain cause side effects that can be very serious.
-if you receive chiropractic treatments (for FM or not) and you have a breakthrough bleed, you might have had this happen because the adjustment(s) messed w/ your nerves and glandular systems and that can cause unexpected bleeding as well.
So there! I did it. . I spoke about the girl issues and I'm not going to be embarrassed about it any more. :)
Now back to the summary of the past few weeks--I ended up having to take this really harsh antibiotic called FLAGYL for my bacterial infection. It is extremely nauseating and hard to take and it gives me a horrible stomach ache and head ache. I am on it for 10 days and of course, these days included the past weekend when J. came to see me. Poor J. -- I was so sick that I was literally in bed more than I was awake and I felt bad for him coming all the way out here.
The even worst news about this is that I got my parole denied at the clinic. Every Friday we complete what I like to call our weekly 'report card' which has you rate 23 symptoms for FM. After a simple calculation, you get the % of wellness that you currently have rated for yourself. The general rule of thumb is that when you hit wellness in the 90% range, you are getting your 2 week notice and get to go home at the end of those 2 weeks.
Monday is usually the day we get to know our progress and I was upset because my % wellness was much lower than it should be due to the non-FM related symptoms caused by the FLAGYL. Unfortunately, the doctors want to keep you until you get your FM symptoms separated from other ones so I basically have to spend this week and next dealing w/ issues not related to FM and that means I most certainly am not going home in three weeks.
So, I finally had the discussion w/ my doctor that I was avoiding. When do I get to go home? They really would like it if I stayed through my 16th week, and I told them I can't afford it and that I could only stay through my 14th week. So that's the deal, I get released on Sept. 19th. I am really bummed out and stressed about the $$ it is costing us. The typical patient stays for about 8 weeks and I believe I am now the 3rd longest patient here -- is anyone surprised? Not me. . As my friend Landon said 'You can't catch a break' and I thought 'if I had a penny for everytime I heard that. . . .'
This information on my delay here also coincided with Jason going back home (and I won't see him again until I get home to NM) and also coincided w/ my dear friend Laura leaving back to Puerto Rico. Needless to say my depression on Monday was at a fairly high level and I cried a whole lot.
But Tuesday was another day and I'm keeping up w/ my treatments and am now starting to do stretching and cervical traction at home. I still have horrible nausea and headaches due to the FLAGYL and am counting the days left (I am done this coming Saturday).
Despite all of these other problems, my FM seems pretty good. I am only taking my narcotic pain meds when I absolutely need to and I am taking far less than I used to. . like maybe 1/2 a pill of Lortab a day vs. 5 pills of Lortab a day. However, I am so frustrated because I really wanted to be home before fall moves in. I get so depressed during the fall that I wanted to see a bit of summer left in NM. I miss the hummingbirds and the crickets and the ability to see stars in the sky.
Some fun news is that my parents bought an awesome, new motor home and we get it on Saturday! Their current one is very nice and this new one is like a touring bus -- all leather, wood, etc. I even get an extra slide out in the bedroom. It's scary that I am now acting like a retired old lady who is learning to live the motor home life.
On the 1 good day I had w/ J. we drove to Sacramento and went to IKEA. That place is the mecca of all home furnishing stores. I was absolutely ecstatic to actually be in the store. I didn't even care that I had to drive 2 hours in the curvy mountains to Sacramento and did this wearing my stupid neck brace. But I followed the rules and my neck did okay. J. and I had a field day and literally bought all new furniture for our house! It was then that I realized how much I want to get back home and be able to spend time w/ J. and our babies working on the house.
Aside from all of this stuff, the progress is going slow but steady. I am relieved to have an actual release date but wish it were a bit earlier. How I miss the fiestas in Santa Fe, the state fair, and Zozobra (google that if you don't know what it is).
So with some reservations I am now slowly counting the last 5 weeks here and am trying to make it go by as fast as possible. . but remember I am the turtle so it's clearly much slower than I'd like it to be.
l_l
The past 2 weeks have not been so good. . and yes, despite my hesitancy to write about delicate girl subjects, I feel it is important to share this information for those women who find themselves in the same place. This applies not only to FM patients and could apply to healthy women as well.
In a nutshell, I started to bleed vaginally about 15 days ago. I'm on a birth control pill and I was nowhere near my cycle time. I've been on this pill for well over 5 years due to Polycystic Ovary Syndrome (PCOS). It's a bit ironic given the fact that I have had my tubes tied for over a decade now but w/ PCOS you need to have more female hormones in your body because otherwise you have nasty symptoms like hemorrhaging vaginally, facial acne, facial hair growth that ain't for girls, and a lot of pain and cramping. I also need the pill because I am low on my blood supply (due to past hemorrhaging periods) so I skip my period for 2 months and have a period at the end of the third in order to build up the blood in my body.
In the 5 years that I've taken the pill, I've never had a breakthrough bleed, so this alarmed me along w/ the fact that I am totally anemic and losing blood is not a good thing for me. I finally went to an ob/gyn here in Tahoe (who was and is a complete bitch) and I was diagnosed with a bacterial infection called 'gardnerella' & supposedly it was a potential cause of the bleeding. However, due to the FM and treatments it's not so clear if this was the reason for my breakthrough bleeding or not.
As usual, my case is so complicated no one really knows exactly what started this bleeding and it could be a combo of sorts. It could be the gardnerella, but it also could be that I was using homeopathic means to get rid of the candida overgrowth in my gut. This entailed drinking 2 types of Pau D'Arco tea (which is a strong herbal tea made of the bark of a tree), using oregano oil & applying it to my feet, my sacrum, and on my tongue, taking probiotics orally and via saline enemas (again, to coat the gut w/ good bacteria) and finally taking digestive enzymes. My point here is this--*be careful w/ homeopathic methods as they can be as dangerous as any prescribed drug*. Case in point -- Pau D'Arco tea can act as an anti-coagulant and that most definitely may have attributed to my bleeding. I am happy to share the various treatments with individuals but please note that I am not a doctor nor a naturopath so you must decide for yourself if these items are safe for you to use. Everyone is different.
Finally, many women are not aware of this but chiropractics can often cause women to have hormone fluctuations. I've seen many an older female patient start to experience hot flashes and other symptoms of menopause even if they went through it decades ago. I've also talked to patients that have started bleeding after a regular chiropractic adjustment. I believe that with the amount and intensity of my chiropractic treatments right now it's highly possible my body is re-setting itself and am regulating my hormones better now (i.e. - maybe I no longer have PCOS anymore).
Thus, the 3 things I want women--particularly those with FM--to know are this:
-vaginal bleeding that is abnormal could be caused by a bacterial or yeast infection and you need to get a swab test done to rule out this potential problem.
-naturopathic treatments for any disease, FM or not, is fine but treat everything you take as if it were a prescription med. Just because you can go to a store and buy an innocuous looking box of tea, it could have many contraindications with other meds you may be taking or just plain cause side effects that can be very serious.
-if you receive chiropractic treatments (for FM or not) and you have a breakthrough bleed, you might have had this happen because the adjustment(s) messed w/ your nerves and glandular systems and that can cause unexpected bleeding as well.
So there! I did it. . I spoke about the girl issues and I'm not going to be embarrassed about it any more. :)
Now back to the summary of the past few weeks--I ended up having to take this really harsh antibiotic called FLAGYL for my bacterial infection. It is extremely nauseating and hard to take and it gives me a horrible stomach ache and head ache. I am on it for 10 days and of course, these days included the past weekend when J. came to see me. Poor J. -- I was so sick that I was literally in bed more than I was awake and I felt bad for him coming all the way out here.
The even worst news about this is that I got my parole denied at the clinic. Every Friday we complete what I like to call our weekly 'report card' which has you rate 23 symptoms for FM. After a simple calculation, you get the % of wellness that you currently have rated for yourself. The general rule of thumb is that when you hit wellness in the 90% range, you are getting your 2 week notice and get to go home at the end of those 2 weeks.
Monday is usually the day we get to know our progress and I was upset because my % wellness was much lower than it should be due to the non-FM related symptoms caused by the FLAGYL. Unfortunately, the doctors want to keep you until you get your FM symptoms separated from other ones so I basically have to spend this week and next dealing w/ issues not related to FM and that means I most certainly am not going home in three weeks.
So, I finally had the discussion w/ my doctor that I was avoiding. When do I get to go home? They really would like it if I stayed through my 16th week, and I told them I can't afford it and that I could only stay through my 14th week. So that's the deal, I get released on Sept. 19th. I am really bummed out and stressed about the $$ it is costing us. The typical patient stays for about 8 weeks and I believe I am now the 3rd longest patient here -- is anyone surprised? Not me. . As my friend Landon said 'You can't catch a break' and I thought 'if I had a penny for everytime I heard that. . . .'
This information on my delay here also coincided with Jason going back home (and I won't see him again until I get home to NM) and also coincided w/ my dear friend Laura leaving back to Puerto Rico. Needless to say my depression on Monday was at a fairly high level and I cried a whole lot.
But Tuesday was another day and I'm keeping up w/ my treatments and am now starting to do stretching and cervical traction at home. I still have horrible nausea and headaches due to the FLAGYL and am counting the days left (I am done this coming Saturday).
Despite all of these other problems, my FM seems pretty good. I am only taking my narcotic pain meds when I absolutely need to and I am taking far less than I used to. . like maybe 1/2 a pill of Lortab a day vs. 5 pills of Lortab a day. However, I am so frustrated because I really wanted to be home before fall moves in. I get so depressed during the fall that I wanted to see a bit of summer left in NM. I miss the hummingbirds and the crickets and the ability to see stars in the sky.
Some fun news is that my parents bought an awesome, new motor home and we get it on Saturday! Their current one is very nice and this new one is like a touring bus -- all leather, wood, etc. I even get an extra slide out in the bedroom. It's scary that I am now acting like a retired old lady who is learning to live the motor home life.
On the 1 good day I had w/ J. we drove to Sacramento and went to IKEA. That place is the mecca of all home furnishing stores. I was absolutely ecstatic to actually be in the store. I didn't even care that I had to drive 2 hours in the curvy mountains to Sacramento and did this wearing my stupid neck brace. But I followed the rules and my neck did okay. J. and I had a field day and literally bought all new furniture for our house! It was then that I realized how much I want to get back home and be able to spend time w/ J. and our babies working on the house.
Aside from all of this stuff, the progress is going slow but steady. I am relieved to have an actual release date but wish it were a bit earlier. How I miss the fiestas in Santa Fe, the state fair, and Zozobra (google that if you don't know what it is).
So with some reservations I am now slowly counting the last 5 weeks here and am trying to make it go by as fast as possible. . but remember I am the turtle so it's clearly much slower than I'd like it to be.
l_l
Friday, August 8, 2008
Blog#15--The Turtle and The Duck
Sorry it's been so long. I'm borrowing another person's computer so I can catch up on email and posts.
I wish I could start this off on a positive note but life doesn't always allow us to have only good things happening to us. Yesterday a dear friend of mine and my parents committed suicide. We're all in shock and in the beginning stages of grief that people go through particularly with suicide. I doubt I have to remind too many of you that I lost someone I loved very much to suicide 4+ years ago. Don's death yesterday made me so very sad but it also stirred up all the emotions of losing Chris so long ago. I feel as I am back in the first stages of grief in losing Chris and now I have to go through it again for 2 people. All I can ask is this: please pray for Don and for Chris. I do believe Chris has finally found peace and has moved on to the next plane of existence. However, deep in my heart I think Don is still confused and probably earthbound so I ask for him to find his way to the light. I also ask for prayers for my dad and mom, my dad in particular. This was one of my dad's closest friends and my dad tried so very hard during the past 6 months to keep Don from harming himself and I know all too well that suicide inherently causes guilt on the survivor's part. Again, please keep all of us in your prayers.
Seems disrespectful to leave that subject and move onto to my FM progress but that is what this blog is for so I will do so.
The past 3 weeks or so have been pretty much the norm in terms of FM progress. As I have said before I am slow in progress, thus earning me the name of 'the turtle'. 2 weeks ago I hit 76% wellness then nose dived to 70% last week, which was pretty discouraging to me. However, this week my numbers were at 80% so it's encouraging. When you start hitting and staying in the 90's is when you are headed home.
I've had a continual headache for over 2 weeks now and it is pretty rotten at some times. Some days it is a low murmur over my eye and other days it is a pounding hammer that hits my eyes and then crawls up over my skull and down to my neck. After lots of thinking we have figured out it is either 1 of 3 things or a combo of all. Those things being: sinuses (I'm not used to A/C and I'm all dried out); the paint smell from the clinic (they are remodeling); and finally narcotic withdrawal rebound headaches (I have titrated down to 1/2 a pill of Lortab, 3 x a day, and 1/2 pill Percocet, 1 x a day). Next week I will go down to 1/4 pills and the following week quit taking them altogether. It's exciting that my pain isn't nearly as bad as it was before and I am hoping that worse case I have to take 1/2 a Lortab or 1/2 Percocet on days when I flare up. The narcotic withdrawals have been painful as I was vomiting a lot until I realized I should take my anti-nausea meds with them and that has made my detox a lot easier.
A big part of getting better means your sympathetic nervous system is shutting itself off (which is part of what triggers FM initially) and that your parasympathetic nervous system is now back on. That is all good but when this happens your parasympathetic nervous system says 'oh crap, you haven't slept for XX amount of time--in my case years--and you fall into this hibernation state where you are sleepy all the time. I can fall asleep at the drop of a hat.
That's where the biggest challenge I am facing now begins. . when to rest and when to push it. We've experimented and for me walking 1.5 miles a day is my baseline--I must do this a minimum of 6 days a week--and if I can walk 3 to 4.5 miles w/o wiping myself out for the next few days then I can push it that far.
Another change is my doctor has started to stretch my body. FM causes you to have atrophy to the muscles since you are so bed-bound during it and my atrophy is worse than most because of my other neuro-muscular disease, Dermatomyositis. But I am seeing big progress. Since I was 12 I've had limited range of motion mostly in my back, hips, and leg areas. If laying on my back, I usually can only lift my legs to a 40 degree angle. My doctor can get me to almost a 90 degree angle now and I will start these exercises at home soon. She says that even my long (very long) time w/ limited range of motion is still fixable. She says that once you can get the fibers in the muscles to start changing then your range of motion will return. I never expected to get that part of my physical problems fixed so it makes me happy.
My sister came to visit last week and through her eyes I saw Tahoe as it really should be seen. Majestic and gorgeous. We went on an old paddle boat dinner cruise and the lake is so absolutely stunning. . 60 feet visibility. It is the perfect place for me as it has mountains and water. I have this very deep gut feeling that we'll end up here one day but that might be a long time from now. Since I will always require massage and chiropractics, what better place to be than w/ the best doctors & massage therapists out there?
Anyway, having my sister here was fun. It's the first time that the 4 of us (mom, dad, her, and I) have been alone together in decades. She was great and took care of me when I was having nausea and tolerated sharing the bed with me and Mojo. It meant a lot to me to have her visit.
The other big change is that I am getting a lot of input from people who know me well as they come to visit. I may have said this before that I can't really tell how much better I am. . the numbers say 80% but I don't know what it means to feel 80%. When my mom arrived she said I was remarkably better and that even if I had to leave back then it would still have been worth it. She has extended her stay as my mental health has been so much better with her here. She now fills out the weekly report card for me and my doctor takes both of our evaluation forms and takes an average of those two as it's a more realistic number of how I am feeling.
My sister started crying the day I took her with me to the clinic because she could not believe how much better I was since May. She told my doctor that I am my old self now--the person who I was before I got sick and that I am so much better in all aspects of my life. . again, an assessment that I would not have been able to make, as I live w/ myself every day. I should stop here and say that my doctor is the best, Dr. Maricel Brady. Google her or look up www.cafeoflife.info. This was her first clinic that she owned and with her love and spirit, it grew into a wonderful practice. It's their loss and our great gain to have her here. She used to perform chiropractic adjustments on newborns! It's incredible and she is just an amazing soul.
However, despite all the progress, I still have a ways to go. They are estimating mid-September at best so I did have to fork over a whole lot of money for the extra weeks but nothing is more important than your health, right?
J. is at home and holding down 2 forts (ours & my parents) as that allows my mom to be out here w/ me. He's doing such a great job and not complaining even once that it sucks to have to be the only one taking care of things there. He gets to come out here next Thursday and I am curious what he'll think when he sees me. He already thought I had improved so much when he came out in July but I have no idea what he'll think now.
Don't get me wrong, I'll always have FM and I will probably fight fatigue every day given my past and present illnesses. However, I can at least lead a normal life, although it will not be anything like it was before--but I'm not sure that is a bad thing. I was clearly so unhappy before I got sick and I believe I just didn't see the warning signs. So many people kept telling me that I needed to quit my job, to slow down, to work on me and I ignored all of them and curled up into a ball in my bed. I basically put my head in the sand. So that's why I think I got sick. I didn't pay attention to my basic needs and happiness and so it took something this major to make me surrender and realize that I'm done w/ that hectic kind of life.
Another thing I've been trying to learn over the past month or two is to become a duck. I had a nurse once who gave me a piece of advice that was more useful than anything the hospital did for me and that was to become a duck. Ducks are waterproof and water literally runs off their backs. She told me to start letting things that are negative slide right off my back and not to even give them any attention. It's great advice and I'm trying to follow it but it isn't easy. However, I've made my peace with a lot of people who I had not forgiven about things from the past and I have also learned to tolerate the negativity that people around you spew out daily. The clinic has it's share of negativity as many are in severe pain and also are just plain negative. I have learned to tune these things out and not let them bother me anymore. Sometimes that means literally leaving the waiting room and sitting in the hall but it is certainly better than the alternative of choking down the negative energies in the room. I'm trying at any rate.
Today is a day mixed with a lot of happiness and sadness as many patients who started w/ me are leaving. There are 5 leaving today and I am close to most of them. We cry and feel glad for them but sad for us. I've made one of the best connections in my life to a beautiful woman named Laura (yes, that is her real name). She is just the kindest person I've ever met and we met and struck up a friendship immediately. For once I have a girlfriend who is sick like me and understands when I say "I can't eat this because of candida" or "I need a bathroom *now*", etc. etc. Last Saturday she told me she got her 2 weeks notice (which means you are out of here in 2 weeks) and I started crying immediately. I do not know how I'll finish out the last month+ of treatment without her being here. I know that we'll be friends for life--it's just one of those connections I know won't ever dissipate.
Another very close friendship I have developed is with a young man named Landon. He's the founder's son and he is absolutely amazing. At the young age of 20 he is already working on development of a non-profit organization that would help those attend the clinic who don't have the $$. He's doing this on his own along with his job duties here & making plans to attend college. He's an eternally sunny person and we have a lot of shared interests--particularly with rocks, crystals, and water. I will miss him very much when I leave here as he has also started to feel like family and is dear to my heart.
I need to go as I have my massage next but I wanted to make sure you all knew where I am at. Again, I am so grateful to all of you for calling, emailing, writing, etc. etc. I could not have even made it this far on this journey w/o each of you.
l_l
I wish I could start this off on a positive note but life doesn't always allow us to have only good things happening to us. Yesterday a dear friend of mine and my parents committed suicide. We're all in shock and in the beginning stages of grief that people go through particularly with suicide. I doubt I have to remind too many of you that I lost someone I loved very much to suicide 4+ years ago. Don's death yesterday made me so very sad but it also stirred up all the emotions of losing Chris so long ago. I feel as I am back in the first stages of grief in losing Chris and now I have to go through it again for 2 people. All I can ask is this: please pray for Don and for Chris. I do believe Chris has finally found peace and has moved on to the next plane of existence. However, deep in my heart I think Don is still confused and probably earthbound so I ask for him to find his way to the light. I also ask for prayers for my dad and mom, my dad in particular. This was one of my dad's closest friends and my dad tried so very hard during the past 6 months to keep Don from harming himself and I know all too well that suicide inherently causes guilt on the survivor's part. Again, please keep all of us in your prayers.
Seems disrespectful to leave that subject and move onto to my FM progress but that is what this blog is for so I will do so.
The past 3 weeks or so have been pretty much the norm in terms of FM progress. As I have said before I am slow in progress, thus earning me the name of 'the turtle'. 2 weeks ago I hit 76% wellness then nose dived to 70% last week, which was pretty discouraging to me. However, this week my numbers were at 80% so it's encouraging. When you start hitting and staying in the 90's is when you are headed home.
I've had a continual headache for over 2 weeks now and it is pretty rotten at some times. Some days it is a low murmur over my eye and other days it is a pounding hammer that hits my eyes and then crawls up over my skull and down to my neck. After lots of thinking we have figured out it is either 1 of 3 things or a combo of all. Those things being: sinuses (I'm not used to A/C and I'm all dried out); the paint smell from the clinic (they are remodeling); and finally narcotic withdrawal rebound headaches (I have titrated down to 1/2 a pill of Lortab, 3 x a day, and 1/2 pill Percocet, 1 x a day). Next week I will go down to 1/4 pills and the following week quit taking them altogether. It's exciting that my pain isn't nearly as bad as it was before and I am hoping that worse case I have to take 1/2 a Lortab or 1/2 Percocet on days when I flare up. The narcotic withdrawals have been painful as I was vomiting a lot until I realized I should take my anti-nausea meds with them and that has made my detox a lot easier.
A big part of getting better means your sympathetic nervous system is shutting itself off (which is part of what triggers FM initially) and that your parasympathetic nervous system is now back on. That is all good but when this happens your parasympathetic nervous system says 'oh crap, you haven't slept for XX amount of time--in my case years--and you fall into this hibernation state where you are sleepy all the time. I can fall asleep at the drop of a hat.
That's where the biggest challenge I am facing now begins. . when to rest and when to push it. We've experimented and for me walking 1.5 miles a day is my baseline--I must do this a minimum of 6 days a week--and if I can walk 3 to 4.5 miles w/o wiping myself out for the next few days then I can push it that far.
Another change is my doctor has started to stretch my body. FM causes you to have atrophy to the muscles since you are so bed-bound during it and my atrophy is worse than most because of my other neuro-muscular disease, Dermatomyositis. But I am seeing big progress. Since I was 12 I've had limited range of motion mostly in my back, hips, and leg areas. If laying on my back, I usually can only lift my legs to a 40 degree angle. My doctor can get me to almost a 90 degree angle now and I will start these exercises at home soon. She says that even my long (very long) time w/ limited range of motion is still fixable. She says that once you can get the fibers in the muscles to start changing then your range of motion will return. I never expected to get that part of my physical problems fixed so it makes me happy.
My sister came to visit last week and through her eyes I saw Tahoe as it really should be seen. Majestic and gorgeous. We went on an old paddle boat dinner cruise and the lake is so absolutely stunning. . 60 feet visibility. It is the perfect place for me as it has mountains and water. I have this very deep gut feeling that we'll end up here one day but that might be a long time from now. Since I will always require massage and chiropractics, what better place to be than w/ the best doctors & massage therapists out there?
Anyway, having my sister here was fun. It's the first time that the 4 of us (mom, dad, her, and I) have been alone together in decades. She was great and took care of me when I was having nausea and tolerated sharing the bed with me and Mojo. It meant a lot to me to have her visit.
The other big change is that I am getting a lot of input from people who know me well as they come to visit. I may have said this before that I can't really tell how much better I am. . the numbers say 80% but I don't know what it means to feel 80%. When my mom arrived she said I was remarkably better and that even if I had to leave back then it would still have been worth it. She has extended her stay as my mental health has been so much better with her here. She now fills out the weekly report card for me and my doctor takes both of our evaluation forms and takes an average of those two as it's a more realistic number of how I am feeling.
My sister started crying the day I took her with me to the clinic because she could not believe how much better I was since May. She told my doctor that I am my old self now--the person who I was before I got sick and that I am so much better in all aspects of my life. . again, an assessment that I would not have been able to make, as I live w/ myself every day. I should stop here and say that my doctor is the best, Dr. Maricel Brady. Google her or look up www.cafeoflife.info. This was her first clinic that she owned and with her love and spirit, it grew into a wonderful practice. It's their loss and our great gain to have her here. She used to perform chiropractic adjustments on newborns! It's incredible and she is just an amazing soul.
However, despite all the progress, I still have a ways to go. They are estimating mid-September at best so I did have to fork over a whole lot of money for the extra weeks but nothing is more important than your health, right?
J. is at home and holding down 2 forts (ours & my parents) as that allows my mom to be out here w/ me. He's doing such a great job and not complaining even once that it sucks to have to be the only one taking care of things there. He gets to come out here next Thursday and I am curious what he'll think when he sees me. He already thought I had improved so much when he came out in July but I have no idea what he'll think now.
Don't get me wrong, I'll always have FM and I will probably fight fatigue every day given my past and present illnesses. However, I can at least lead a normal life, although it will not be anything like it was before--but I'm not sure that is a bad thing. I was clearly so unhappy before I got sick and I believe I just didn't see the warning signs. So many people kept telling me that I needed to quit my job, to slow down, to work on me and I ignored all of them and curled up into a ball in my bed. I basically put my head in the sand. So that's why I think I got sick. I didn't pay attention to my basic needs and happiness and so it took something this major to make me surrender and realize that I'm done w/ that hectic kind of life.
Another thing I've been trying to learn over the past month or two is to become a duck. I had a nurse once who gave me a piece of advice that was more useful than anything the hospital did for me and that was to become a duck. Ducks are waterproof and water literally runs off their backs. She told me to start letting things that are negative slide right off my back and not to even give them any attention. It's great advice and I'm trying to follow it but it isn't easy. However, I've made my peace with a lot of people who I had not forgiven about things from the past and I have also learned to tolerate the negativity that people around you spew out daily. The clinic has it's share of negativity as many are in severe pain and also are just plain negative. I have learned to tune these things out and not let them bother me anymore. Sometimes that means literally leaving the waiting room and sitting in the hall but it is certainly better than the alternative of choking down the negative energies in the room. I'm trying at any rate.
Today is a day mixed with a lot of happiness and sadness as many patients who started w/ me are leaving. There are 5 leaving today and I am close to most of them. We cry and feel glad for them but sad for us. I've made one of the best connections in my life to a beautiful woman named Laura (yes, that is her real name). She is just the kindest person I've ever met and we met and struck up a friendship immediately. For once I have a girlfriend who is sick like me and understands when I say "I can't eat this because of candida" or "I need a bathroom *now*", etc. etc. Last Saturday she told me she got her 2 weeks notice (which means you are out of here in 2 weeks) and I started crying immediately. I do not know how I'll finish out the last month+ of treatment without her being here. I know that we'll be friends for life--it's just one of those connections I know won't ever dissipate.
Another very close friendship I have developed is with a young man named Landon. He's the founder's son and he is absolutely amazing. At the young age of 20 he is already working on development of a non-profit organization that would help those attend the clinic who don't have the $$. He's doing this on his own along with his job duties here & making plans to attend college. He's an eternally sunny person and we have a lot of shared interests--particularly with rocks, crystals, and water. I will miss him very much when I leave here as he has also started to feel like family and is dear to my heart.
I need to go as I have my massage next but I wanted to make sure you all knew where I am at. Again, I am so grateful to all of you for calling, emailing, writing, etc. etc. I could not have even made it this far on this journey w/o each of you.
l_l
Friday, August 1, 2008
Blog #14--No Computer
Hi Everyone,
My good friend, Landon (the Brazilian Thunder) loaned me his computer for a few.
My computer died a few days ago and I have not been able to access anything. . nor post a blog.
As soon as I find a new machine I will update but not to worry.
I've had a week of some progress but a little bit worse in the numbers, totally normal.
I love you all. If anyone wants to send this ingrate (sp?) a computer I would love you forever. . lol.
l_l
My good friend, Landon (the Brazilian Thunder) loaned me his computer for a few.
My computer died a few days ago and I have not been able to access anything. . nor post a blog.
As soon as I find a new machine I will update but not to worry.
I've had a week of some progress but a little bit worse in the numbers, totally normal.
I love you all. If anyone wants to send this ingrate (sp?) a computer I would love you forever. . lol.
l_l
Wednesday, July 16, 2008
Blog #13--Summertime Rolls
Sorry for the long hiatus. I am not feeling too creative today and couldn't think of a good title so I chose to borrow from Jane's Addiction. Although my life is mainly consumed in treatment right now, the summer has continued to roll on by and I am glad to be out in the sun when I can.
Let's see. . . the last time I wrote anything worth reading was several weeks ago. I am now in week 6 of treatment and have been having some better results. My doctor has this cool formula that she uses to quantify what % of wellness I feel each week. I came in on week #1 at 25% and as of last week, I was at 61%. Another major milestone, last weekend my hips started to hurt a lot but not in the FM way. The tender points weren't sore, but I kept cupping my hand over the rotator area and that was where both sides were hurting. Despite the pain, I also noticed that I had more range of motion back. I have had a lot of trouble crossing my legs since I got sick and I found myself doing this naturally while at the movies one evening. I thought that this must then be a good pain and it turns out I was correct. On Sunday, my doctor said it meant that we'd made enough headway that my hips were able to start rotating properly again and that is why it hurt initially. This also meant I got to start the massage phase of the treatment. I was bummed out because most people start on their 5th week and as of Friday of last week my hips hadn't started moving like that so we didn't think I'd start massage on the 6th week either. But then all the above happened and I ended up starting massage yesterday, 1 week behind the 'normal' people. My therapist is great and she lived in Santa Fe for a long time so we had a great time talking about home. I wasn't sore after my massage which is a very good thing for an FM patient.
We are still assuming I will take until September to reach the point where I can go home. My doctor has been straight with me that I will probably never be one of those who achieves 100% but she'd sure like to get me in the 90% range. She also told me there are 3 types of people who leave the clinic:
1-those who achieve 100% wellness and never have another problem with FM
2-those who achieve a high level of wellness and have occasional flare-ups with FM but can fix those with the help of local massage and chiropractor help. (I should mention that before you leave here your doctor 'interviews' massage therapists and chiropractors in your home area to find someone who will agree to do the modified versions of massage/chiropractics at home. If they have ego and won't agree to that kind of treatment then we move on to another one. Personally, I think it's amazing that they do these interviews and make sure we're not being thrown to the wolves).
3-those who achieve a good level of wellness but need constant massage and chiropractic therapy for the rest of their lives.
In all honesty she said I wouldn't be in category #1 and I knew that already. I know my body too well. She hopes I can fall into category #2 but is pretty sure I will be in the latter category (although she did tell me to shoot for the stars). I was a bit upset about this at first because I thought I'd go home fixed but I then realized I am lucky to even have the chance to go home at 85% or higher and if I need to seek massage and chiropractic care every week for the rest of my life, so be it. I will still have a real life which is more than I've had before coming here.
Financially, I'm a bit worried how we'll pay for this since stupid insurance companies don't ever cover massage but I've got a few tricks up my sleeve to try before I have to go and pay all of it out of my pocket. I believe it wise to not say these in an open forum but if you find yourself in a similar situation contact me and I'll tell you how to work the system. By no means do I feel guilty about it because insurance companies work us constantly and at every chance they get.
I wasn't sure how much my husband, J., would think I'd improved when he came out to see me. He said that he was completely surprised that I got up without anyone forcing me every day at 7 AM to go to the clinic and that I walked. He said that was huge to him. He also said that I had 5 good days in a row and that has probably not happened in over 2 years. . so I think he's super glad with the progress. I still have a long ways to go but it was nice to hear it from someone who'd seen me in my very worst state and could evaluate me effectively. Seeing myself day to day, it's hard to know if I am progressing or not.
I finally figured out that either by the sheer nature of the treatment program or if on purpose, the program is a lot like a rehab center for those with addiction problems. First, I have a set schedule each day that I have to keep. I have to get up at the same time every day 6 days out of the week. I shower daily and put on clothes daily -- something I haven't done for a very long time.
Clinic offers treatment but it also has you do many other things outside of the walls of the center. You have to look at your nutrition and learn a lot about what works for you. For FM patients this means a lot of protein, low sugar, low or no caffeine, and if possible no smoking, drinking alcohol, or use of any other drugs. They don't just fix your FM they also address your body and our individual needs. If they think you are potentially one who has a lot of detox to do (not for drugs, but a lot of patients develop candida and you have to do a lot of stuff to get rid of that) and if you do need that they send you to a doctor in Carson City who is an MD and Natureopath (sp?).
The clinic staff urges you to walk daily and they teach you the most gentlest but most effective way. . short walks several times a day. I now look back and see how I'd kill myself on the elliptical machine at home or walk 6 miles and I'd just suffer. Now I walk to the clinic up to 3 times a day so I'm walking anywhere between 1.5 and 4.5 miles per day which adds up fast. I've walked over 100 miles since being here and am starting to shed my weight.
The way the clinic is situated you have a lot of group interaction while waiting for your adjustments. This is almost like a group therapy as all of these people are going through all the things you are and people share (and sometimes argue a lot) their ideas, etc.
The clinic also offers a group session with their staff psychiatrist. If you know me, you know I am *not* a fan of psychiatrists thanks to all the past mess ups that I've suffered due to them. However, this group is really cool. The dynamic is low key and he talks about relevant issues and not at all about medications. The group meets every other week and talks about how to rejoin life, dealing with pain, dealing with the change of hormones, and any other relevant topic. You can say all you want at a meeting or say nothing at all. . it's up to you.
As with any rehab center, one of the biggest goals is to get off the drugs (in this case pain meds that I legitimately need). I have to say that even now my medications list is already starting to get smaller due to my lack of pain. However, right now I am going through the irritatingly slow process of lowering my pain meds. I don't need Lortab or Percocet nearly as much as I did before but every time I cut back I get sick w/ nausea withdrawals. I'll get through the withdrawal and then have a day of pain and I'm back on my meds again. . (note -- this is a very common problem with FM patients and you just have to wait until you've rode out the sine wave). I've consulted with my doctor at home and we now have a better plan for how to get off of these w/o making myself sick, quite literally.
My biggest fear about coming home was that I'd fall into my old routine. It's a known fact that when someone gets chronically ill, part of their brain actually does not want them to get well and can inhibit your wellness. It's actually a safety mechanism for the body but if not addressed all your progress can go out the window.
The more I keep thinking about the big issue of coming home I realize that I already have a plan and that is because of my schedule or 'rehab' here. I will get up at the same time every day that I can (okay, it won't be 7 AM but more like 10 AM). I will find 3 reasons to get out and walk each day. . thus if I'm up for it, I can walk anywhere from 1.5 to 4.5 miles per day. . and if there is a day I don't feel like walking it's okay because I am doing it so frequently that it's not as critical anymore.
I've also realized the value of meals and eating at the right time so I plan to make myself and J. breakfasts. We have always skipped breakfast because we were too busy and would rather sleep late than put something together but I plan on making our meals the night before so that we do get that protein boost in the AM. It makes *such* a difference to me. I've also realized that I need to eat a real dinner, not just cereal like I have for the past several years so J. and I are going to start making dinners together at night.
So right there, I have a skeleton schedule and it includes exercise, nutrition, reasons to be up and dressed, and quality time with J. If I went back to May, I had none of these. If I can achieve these items when I get home, I think I can live a fairly satisfied life. I may not ever be 100% but if I can do what I am doing right now, I will surely be able to look back on this experience and see it as a gift from the Divine.
I guess I never realized how far encompassing this disease had become in my life and body. I am fortunate that I am at a place that realizes that it's not just about stopping the FM but it's also about bringing your body, mind, and spirit to a better place and with more serenity. If that's what they call rehab, then I'm glad I'm in it, and if you are out there suffering from any chronic disease or addiction maybe this will give you a small push to step out of your comfort zone and make the effort to try and get your life back on track.
l_l
Let's see. . . the last time I wrote anything worth reading was several weeks ago. I am now in week 6 of treatment and have been having some better results. My doctor has this cool formula that she uses to quantify what % of wellness I feel each week. I came in on week #1 at 25% and as of last week, I was at 61%. Another major milestone, last weekend my hips started to hurt a lot but not in the FM way. The tender points weren't sore, but I kept cupping my hand over the rotator area and that was where both sides were hurting. Despite the pain, I also noticed that I had more range of motion back. I have had a lot of trouble crossing my legs since I got sick and I found myself doing this naturally while at the movies one evening. I thought that this must then be a good pain and it turns out I was correct. On Sunday, my doctor said it meant that we'd made enough headway that my hips were able to start rotating properly again and that is why it hurt initially. This also meant I got to start the massage phase of the treatment. I was bummed out because most people start on their 5th week and as of Friday of last week my hips hadn't started moving like that so we didn't think I'd start massage on the 6th week either. But then all the above happened and I ended up starting massage yesterday, 1 week behind the 'normal' people. My therapist is great and she lived in Santa Fe for a long time so we had a great time talking about home. I wasn't sore after my massage which is a very good thing for an FM patient.
We are still assuming I will take until September to reach the point where I can go home. My doctor has been straight with me that I will probably never be one of those who achieves 100% but she'd sure like to get me in the 90% range. She also told me there are 3 types of people who leave the clinic:
1-those who achieve 100% wellness and never have another problem with FM
2-those who achieve a high level of wellness and have occasional flare-ups with FM but can fix those with the help of local massage and chiropractor help. (I should mention that before you leave here your doctor 'interviews' massage therapists and chiropractors in your home area to find someone who will agree to do the modified versions of massage/chiropractics at home. If they have ego and won't agree to that kind of treatment then we move on to another one. Personally, I think it's amazing that they do these interviews and make sure we're not being thrown to the wolves).
3-those who achieve a good level of wellness but need constant massage and chiropractic therapy for the rest of their lives.
In all honesty she said I wouldn't be in category #1 and I knew that already. I know my body too well. She hopes I can fall into category #2 but is pretty sure I will be in the latter category (although she did tell me to shoot for the stars). I was a bit upset about this at first because I thought I'd go home fixed but I then realized I am lucky to even have the chance to go home at 85% or higher and if I need to seek massage and chiropractic care every week for the rest of my life, so be it. I will still have a real life which is more than I've had before coming here.
Financially, I'm a bit worried how we'll pay for this since stupid insurance companies don't ever cover massage but I've got a few tricks up my sleeve to try before I have to go and pay all of it out of my pocket. I believe it wise to not say these in an open forum but if you find yourself in a similar situation contact me and I'll tell you how to work the system. By no means do I feel guilty about it because insurance companies work us constantly and at every chance they get.
I wasn't sure how much my husband, J., would think I'd improved when he came out to see me. He said that he was completely surprised that I got up without anyone forcing me every day at 7 AM to go to the clinic and that I walked. He said that was huge to him. He also said that I had 5 good days in a row and that has probably not happened in over 2 years. . so I think he's super glad with the progress. I still have a long ways to go but it was nice to hear it from someone who'd seen me in my very worst state and could evaluate me effectively. Seeing myself day to day, it's hard to know if I am progressing or not.
I finally figured out that either by the sheer nature of the treatment program or if on purpose, the program is a lot like a rehab center for those with addiction problems. First, I have a set schedule each day that I have to keep. I have to get up at the same time every day 6 days out of the week. I shower daily and put on clothes daily -- something I haven't done for a very long time.
Clinic offers treatment but it also has you do many other things outside of the walls of the center. You have to look at your nutrition and learn a lot about what works for you. For FM patients this means a lot of protein, low sugar, low or no caffeine, and if possible no smoking, drinking alcohol, or use of any other drugs. They don't just fix your FM they also address your body and our individual needs. If they think you are potentially one who has a lot of detox to do (not for drugs, but a lot of patients develop candida and you have to do a lot of stuff to get rid of that) and if you do need that they send you to a doctor in Carson City who is an MD and Natureopath (sp?).
The clinic staff urges you to walk daily and they teach you the most gentlest but most effective way. . short walks several times a day. I now look back and see how I'd kill myself on the elliptical machine at home or walk 6 miles and I'd just suffer. Now I walk to the clinic up to 3 times a day so I'm walking anywhere between 1.5 and 4.5 miles per day which adds up fast. I've walked over 100 miles since being here and am starting to shed my weight.
The way the clinic is situated you have a lot of group interaction while waiting for your adjustments. This is almost like a group therapy as all of these people are going through all the things you are and people share (and sometimes argue a lot) their ideas, etc.
The clinic also offers a group session with their staff psychiatrist. If you know me, you know I am *not* a fan of psychiatrists thanks to all the past mess ups that I've suffered due to them. However, this group is really cool. The dynamic is low key and he talks about relevant issues and not at all about medications. The group meets every other week and talks about how to rejoin life, dealing with pain, dealing with the change of hormones, and any other relevant topic. You can say all you want at a meeting or say nothing at all. . it's up to you.
As with any rehab center, one of the biggest goals is to get off the drugs (in this case pain meds that I legitimately need). I have to say that even now my medications list is already starting to get smaller due to my lack of pain. However, right now I am going through the irritatingly slow process of lowering my pain meds. I don't need Lortab or Percocet nearly as much as I did before but every time I cut back I get sick w/ nausea withdrawals. I'll get through the withdrawal and then have a day of pain and I'm back on my meds again. . (note -- this is a very common problem with FM patients and you just have to wait until you've rode out the sine wave). I've consulted with my doctor at home and we now have a better plan for how to get off of these w/o making myself sick, quite literally.
My biggest fear about coming home was that I'd fall into my old routine. It's a known fact that when someone gets chronically ill, part of their brain actually does not want them to get well and can inhibit your wellness. It's actually a safety mechanism for the body but if not addressed all your progress can go out the window.
The more I keep thinking about the big issue of coming home I realize that I already have a plan and that is because of my schedule or 'rehab' here. I will get up at the same time every day that I can (okay, it won't be 7 AM but more like 10 AM). I will find 3 reasons to get out and walk each day. . thus if I'm up for it, I can walk anywhere from 1.5 to 4.5 miles per day. . and if there is a day I don't feel like walking it's okay because I am doing it so frequently that it's not as critical anymore.
I've also realized the value of meals and eating at the right time so I plan to make myself and J. breakfasts. We have always skipped breakfast because we were too busy and would rather sleep late than put something together but I plan on making our meals the night before so that we do get that protein boost in the AM. It makes *such* a difference to me. I've also realized that I need to eat a real dinner, not just cereal like I have for the past several years so J. and I are going to start making dinners together at night.
So right there, I have a skeleton schedule and it includes exercise, nutrition, reasons to be up and dressed, and quality time with J. If I went back to May, I had none of these. If I can achieve these items when I get home, I think I can live a fairly satisfied life. I may not ever be 100% but if I can do what I am doing right now, I will surely be able to look back on this experience and see it as a gift from the Divine.
I guess I never realized how far encompassing this disease had become in my life and body. I am fortunate that I am at a place that realizes that it's not just about stopping the FM but it's also about bringing your body, mind, and spirit to a better place and with more serenity. If that's what they call rehab, then I'm glad I'm in it, and if you are out there suffering from any chronic disease or addiction maybe this will give you a small push to step out of your comfort zone and make the effort to try and get your life back on track.
l_l
Tuesday, July 8, 2008
Blog #12--A Short Note
I apologize for not updating things this week. I had one of the most emotionally draining experiences in my life this past weekend and it's too private for even me to write about here.
However, things are looking up not just for that situation but for my health, too. I'm all too happy to write about it and will after the weekend.
My husband, J., is coming out tomorrow and I can't wait as I haven't seen him in over a month. We've never been apart for more than a week in 11 years so it's a big deal. . and the main reason I won't be logging in to post.
But I will catch up and I hope you'll notice a change in my writing, as I feel more positive and able to cope with things. . and a lot of stuff is starting to fall into place. I'm hopeful for the first time and not being afraid to be that.
Thank you all for your love, cards, gifts, letters, emails, texts, etc. etc. I could not go through this journey w/o each of you.
Have a good week and know I am hanging in there and will update on Sunday or Monday.
l_l
However, things are looking up not just for that situation but for my health, too. I'm all too happy to write about it and will after the weekend.
My husband, J., is coming out tomorrow and I can't wait as I haven't seen him in over a month. We've never been apart for more than a week in 11 years so it's a big deal. . and the main reason I won't be logging in to post.
But I will catch up and I hope you'll notice a change in my writing, as I feel more positive and able to cope with things. . and a lot of stuff is starting to fall into place. I'm hopeful for the first time and not being afraid to be that.
Thank you all for your love, cards, gifts, letters, emails, texts, etc. etc. I could not go through this journey w/o each of you.
Have a good week and know I am hanging in there and will update on Sunday or Monday.
l_l
Sunday, June 29, 2008
Blog #11--1 Step Forward, 5 Steps Back
Thanks to all of you who have continued to express their support for me. I am extremely grateful for all of you.
It's been a pretty bad week. I'm officially starting my 4th week here tomorrow and usually that means that things start getting better more often rather than feeling worse. But as most things go for me medically, that is not what is happening.
A week ago yesterday was my fender bender. While things are progressing very well in terms of getting my car fixed, things are not progressing as well as getting my FM fixed. Last Sunday my doctor saw me for the first time after the accident and although we were not even driving in my car (meaning we probably were hit by the other driver going under 5 mph) she said the damage was noticeable to my neck. She said it was a definite set back and that the only positive spin on it was that we are constantly moving the scar tissue around so we won't let any new scar tissue develop and clog up that area.
Monday - Wednesday were pretty normal except for the fact that most of the new progress I had made during my 2nd week was gone. Some due to the accident and others due to the fact that I had to go back full force on all of my meds. All of my treatments this past week were basically a holding pattern - meaning that she kept the scar tissue fluid but that due to severe inflammation we could not get the scar tissue to move out of the TMJ area.
Due to some construction at the clinic we had a day off on Thursday and I was not hurting as much as I had earlier in the week but I was super nauseated. I thought we had gotten past that stage but no, we did not. Friday was a very hard day for me physically and mentally. I went to clinic and asked my doctor 2 very important questions. Question #1 was 'Do you think I will fully recover?' and she took several minutes to formulate her response which was 'I don't know if you will ever reach 100%. Your case is so complicated and you have FM severely. You are a very sick lady'. I then asked question #2 which was 'How long do you think I will need to be here in order to get me into some semblance of normal life?' and again words were chosen carefully. (One aside - the typical treatment time is 8 weeks). She said 'I know you will need to be here at least 10 weeks, especially since you had an accident and lost a week's treatment but I have to be honest with you that you might very well stay here for 12 to 16 weeks'. 12 to 16 weeks?????
Does that ring any alarm bells for anyone else than just me? I handled the first question okay because my entire life I've never been 100%. If I could be even 80% better I'd be happy but I'd be lying if I said I really did hope that I could attain 100%. My doctor did say she could be entirely wrong and things might really start changing around weeks 5-7 but she was trying her best to give me the most honest answer.
12 weeks would get me through September 9th and to me that seems like a very, very long time to be here. . but 16 weeks? That brings me up to the 2nd week of October. OCTOBER?? I thought I'd be home before winter/fall set in. Of course I will do whatever it takes to make this therapy work for me but it was a blow. Why? Well, for many reasons:
-the sheer fact of being away from home for 4 months and only seeing J. and my mom once during this time (not to mention my babies at home who by that time will probably forget who I am)
-winter here comes early, even as early as Labor Day. Practical reasons for this exist such as my car will not drive in the snow and trying to drive a motor home in the winter across the west-southwest region could be very dangerous. Less practical reasons are that I hate winter, I suffer in a huge way from SAD and I do not want to have to greet cold weather earlier than I have to and at home I'd be able to hopefully have an Indian summer up to late October.
-financially this is going to cost my parents a fortune. It's $7000 for the first 8 weeks (not including the massage phase which I have not started) so that's another $7000+ if I do stay here through 16 weeks. Let's also add to that the rent we pay to park our motor home which is $675 per month in the off season (now). I don't have another $7000 and I don't even want to know where my parents got the first $10000 (they gave me a lump sum to pay for the treatments + massages). I feel so bad already at how much I've burdened them and to know that it might go even longer makes me feel even worse than when I was a sick person who was non-functional at home.
I also feel guilty that I may not have the same positive results that 99% of the patients have. I am very scared now that the amount of recovery I hopefully will gain may not be enough. It's kinda like when I had RK surgery on my eyes. It's the old school method before Lasik. My first surgery took me from 20/700 to 20/100 and the doctors were so happy with that. . well, I wasn't because after a certain point, blind is blind. I had to wait 2 months before I had my 2nd surgery and I was totally incapacitated at 20/100. So in terms of FM, if I'm not up to even 65-70% I'm not sure it's worth pursuing. But what other options do I have anyway??
I know I cannot predict the outcome but I am not exaggerating when I say that anytime something medical comes up for me it never works out the way it's supposed to. If I had a dime for all the times I've heard 'you just can't catch a break' then I'd have more than enough $ to pay for this.
Saturday was our scheduled day off and I spent it sleeping almost the whole day. I was depressed by the information I had received and was also just totally fatigued. I've been not taking my pain meds to ward off the pain before it starts -- instead I've been waiting to see if I need it at all. As you know, 2 weeks ago I was cutting down a lot of the pain meds easily. Well, Friday night I woke up with horrid leg cramps and took Percocet but it was already in full swing. Even more disturbing is that I took a Percocet on Saturday night before I went to bed and 2 hours later I was in extreme pain from my trunk down. Percocet lasts a minimum of 6 hours and is the strongest med I have for pain and for it to only last 2 hours scared me to death. If this whole venture doesn't work then I'm really screwed as I'm building up a tolerance to my current pain meds.
My dad was so kind and rubbed my legs until I fell back asleep. I got up today and went to my first treatment at clinic today feeling like total shit. My legs/trunk area were on fire, my body felt like lead, and my stomach was upset. After my first treatment my doctor told me she wants me to start more intake of protein as it can help w/ the fatigue and pain. She wants me to have 2 eggs in the AM + some type of sausage (I'll be going w/ the tofu sausage) and then get an additional 15 grams later in the day. So I went between treatments and had some eggs at a local diner.
I felt a bit better after that but came home, took a shower (long overdue) and went to bed until 6 PM. I woke up feeling that I was going to lose my lunch which I did in fact do (I hope the protein stayed). So now I am sitting on the couch and am eating crackers and ginger ale, both of which I am not supposed to have.
So what else has reverted? The constipation, the nausea, severe fatigue, and my mental state. My doctor told me today that she believes in 3 pieces of treatment that need to be worked on in order to be well. Mind, body, and spirit. She said I already have the strong spirit and that it doesn't need any work but that my mind (let the jokes begin, I know I am a nut case) and body need a lot. For the mind part this means she wants me to join the support group who meet on Tuesdays with the staff psychiatrist. Now if you know me, you know how low I value a psychiatrist. I personally do not want to sit with a whole bunch of post-menopausal women and discuss my problems of the mind. . so I'm unsure as what I want to do. I clearly have all the signs of someone who has been chronically ill, which are being afraid to get well, hoarding time to rest because I have been so starved of it in the past (which was the scenario when I was working and unable to let my very sick body rest), and finally how to immerse myself back into the land of the living and figure out what type of schedule that will work for me.
Other news? J. and I got bad news that his grandmother was diagnosed with Stage 4 lung cancer and has only a few months to live. I've been so sick over the past few years that I haven't seen her since the summer of 2005 and now I'm worried I won't see her again. I will feel horrible if I can't see her but flying across country (or at all) is not allowed and so inevitably I think J. will be the only one attending her funeral. I feel really bad about this as she has always been so kind to us and I'm not sure my family there understands what is going on.
Good news? There is so much support from all of you. I started taping up all the cards and notes I get and I have my entire bedroom almost filled up. This past week a friend of J's from college wrote me the nicest and most sincere letter I've ever read. K. is such a beautiful soul and it has always been clear to me why her husband, D., is crazy about her. She made a solid attempt (and was right on) to understand what I've been writing about in my blogs. As you know, I always write about my mantras and she gave me 2 that she thought would work for me. You have no idea how much this means to me -- that her and D. follow my blogs/treatment and have crazy-busy lives and *still* found the time to write me that beautiful letter -- means the world to me. The mantra I liked best was "I will not let fear or pain interfere with my healing" (I'm paraphrasing). . I got a piece of paper and wrote the mantra down word for word and taped it over my bed so that when I wake up, it's the first thing I see. So, dear K. , thank you so much. . . it meant so much to me that you wrote me.
Tomorrow starts week #4 (but really week #3 in terms of progress). . and I actually need to ask a favor of all of you. I believe that for me to get well will require more than just the physical and mental work I do -- I believe I need to have some help from the Divine. So, if you'd pray for me to start healing and to get to 100%, I'd appreciate it. It doesn't matter what religion you are, if you'd just keep on praying for that I will be forever indebted.
l_l
It's been a pretty bad week. I'm officially starting my 4th week here tomorrow and usually that means that things start getting better more often rather than feeling worse. But as most things go for me medically, that is not what is happening.
A week ago yesterday was my fender bender. While things are progressing very well in terms of getting my car fixed, things are not progressing as well as getting my FM fixed. Last Sunday my doctor saw me for the first time after the accident and although we were not even driving in my car (meaning we probably were hit by the other driver going under 5 mph) she said the damage was noticeable to my neck. She said it was a definite set back and that the only positive spin on it was that we are constantly moving the scar tissue around so we won't let any new scar tissue develop and clog up that area.
Monday - Wednesday were pretty normal except for the fact that most of the new progress I had made during my 2nd week was gone. Some due to the accident and others due to the fact that I had to go back full force on all of my meds. All of my treatments this past week were basically a holding pattern - meaning that she kept the scar tissue fluid but that due to severe inflammation we could not get the scar tissue to move out of the TMJ area.
Due to some construction at the clinic we had a day off on Thursday and I was not hurting as much as I had earlier in the week but I was super nauseated. I thought we had gotten past that stage but no, we did not. Friday was a very hard day for me physically and mentally. I went to clinic and asked my doctor 2 very important questions. Question #1 was 'Do you think I will fully recover?' and she took several minutes to formulate her response which was 'I don't know if you will ever reach 100%. Your case is so complicated and you have FM severely. You are a very sick lady'. I then asked question #2 which was 'How long do you think I will need to be here in order to get me into some semblance of normal life?' and again words were chosen carefully. (One aside - the typical treatment time is 8 weeks). She said 'I know you will need to be here at least 10 weeks, especially since you had an accident and lost a week's treatment but I have to be honest with you that you might very well stay here for 12 to 16 weeks'. 12 to 16 weeks?????
Does that ring any alarm bells for anyone else than just me? I handled the first question okay because my entire life I've never been 100%. If I could be even 80% better I'd be happy but I'd be lying if I said I really did hope that I could attain 100%. My doctor did say she could be entirely wrong and things might really start changing around weeks 5-7 but she was trying her best to give me the most honest answer.
12 weeks would get me through September 9th and to me that seems like a very, very long time to be here. . but 16 weeks? That brings me up to the 2nd week of October. OCTOBER?? I thought I'd be home before winter/fall set in. Of course I will do whatever it takes to make this therapy work for me but it was a blow. Why? Well, for many reasons:
-the sheer fact of being away from home for 4 months and only seeing J. and my mom once during this time (not to mention my babies at home who by that time will probably forget who I am)
-winter here comes early, even as early as Labor Day. Practical reasons for this exist such as my car will not drive in the snow and trying to drive a motor home in the winter across the west-southwest region could be very dangerous. Less practical reasons are that I hate winter, I suffer in a huge way from SAD and I do not want to have to greet cold weather earlier than I have to and at home I'd be able to hopefully have an Indian summer up to late October.
-financially this is going to cost my parents a fortune. It's $7000 for the first 8 weeks (not including the massage phase which I have not started) so that's another $7000+ if I do stay here through 16 weeks. Let's also add to that the rent we pay to park our motor home which is $675 per month in the off season (now). I don't have another $7000 and I don't even want to know where my parents got the first $10000 (they gave me a lump sum to pay for the treatments + massages). I feel so bad already at how much I've burdened them and to know that it might go even longer makes me feel even worse than when I was a sick person who was non-functional at home.
I also feel guilty that I may not have the same positive results that 99% of the patients have. I am very scared now that the amount of recovery I hopefully will gain may not be enough. It's kinda like when I had RK surgery on my eyes. It's the old school method before Lasik. My first surgery took me from 20/700 to 20/100 and the doctors were so happy with that. . well, I wasn't because after a certain point, blind is blind. I had to wait 2 months before I had my 2nd surgery and I was totally incapacitated at 20/100. So in terms of FM, if I'm not up to even 65-70% I'm not sure it's worth pursuing. But what other options do I have anyway??
I know I cannot predict the outcome but I am not exaggerating when I say that anytime something medical comes up for me it never works out the way it's supposed to. If I had a dime for all the times I've heard 'you just can't catch a break' then I'd have more than enough $ to pay for this.
Saturday was our scheduled day off and I spent it sleeping almost the whole day. I was depressed by the information I had received and was also just totally fatigued. I've been not taking my pain meds to ward off the pain before it starts -- instead I've been waiting to see if I need it at all. As you know, 2 weeks ago I was cutting down a lot of the pain meds easily. Well, Friday night I woke up with horrid leg cramps and took Percocet but it was already in full swing. Even more disturbing is that I took a Percocet on Saturday night before I went to bed and 2 hours later I was in extreme pain from my trunk down. Percocet lasts a minimum of 6 hours and is the strongest med I have for pain and for it to only last 2 hours scared me to death. If this whole venture doesn't work then I'm really screwed as I'm building up a tolerance to my current pain meds.
My dad was so kind and rubbed my legs until I fell back asleep. I got up today and went to my first treatment at clinic today feeling like total shit. My legs/trunk area were on fire, my body felt like lead, and my stomach was upset. After my first treatment my doctor told me she wants me to start more intake of protein as it can help w/ the fatigue and pain. She wants me to have 2 eggs in the AM + some type of sausage (I'll be going w/ the tofu sausage) and then get an additional 15 grams later in the day. So I went between treatments and had some eggs at a local diner.
I felt a bit better after that but came home, took a shower (long overdue) and went to bed until 6 PM. I woke up feeling that I was going to lose my lunch which I did in fact do (I hope the protein stayed). So now I am sitting on the couch and am eating crackers and ginger ale, both of which I am not supposed to have.
So what else has reverted? The constipation, the nausea, severe fatigue, and my mental state. My doctor told me today that she believes in 3 pieces of treatment that need to be worked on in order to be well. Mind, body, and spirit. She said I already have the strong spirit and that it doesn't need any work but that my mind (let the jokes begin, I know I am a nut case) and body need a lot. For the mind part this means she wants me to join the support group who meet on Tuesdays with the staff psychiatrist. Now if you know me, you know how low I value a psychiatrist. I personally do not want to sit with a whole bunch of post-menopausal women and discuss my problems of the mind. . so I'm unsure as what I want to do. I clearly have all the signs of someone who has been chronically ill, which are being afraid to get well, hoarding time to rest because I have been so starved of it in the past (which was the scenario when I was working and unable to let my very sick body rest), and finally how to immerse myself back into the land of the living and figure out what type of schedule that will work for me.
Other news? J. and I got bad news that his grandmother was diagnosed with Stage 4 lung cancer and has only a few months to live. I've been so sick over the past few years that I haven't seen her since the summer of 2005 and now I'm worried I won't see her again. I will feel horrible if I can't see her but flying across country (or at all) is not allowed and so inevitably I think J. will be the only one attending her funeral. I feel really bad about this as she has always been so kind to us and I'm not sure my family there understands what is going on.
Good news? There is so much support from all of you. I started taping up all the cards and notes I get and I have my entire bedroom almost filled up. This past week a friend of J's from college wrote me the nicest and most sincere letter I've ever read. K. is such a beautiful soul and it has always been clear to me why her husband, D., is crazy about her. She made a solid attempt (and was right on) to understand what I've been writing about in my blogs. As you know, I always write about my mantras and she gave me 2 that she thought would work for me. You have no idea how much this means to me -- that her and D. follow my blogs/treatment and have crazy-busy lives and *still* found the time to write me that beautiful letter -- means the world to me. The mantra I liked best was "I will not let fear or pain interfere with my healing" (I'm paraphrasing). . I got a piece of paper and wrote the mantra down word for word and taped it over my bed so that when I wake up, it's the first thing I see. So, dear K. , thank you so much. . . it meant so much to me that you wrote me.
Tomorrow starts week #4 (but really week #3 in terms of progress). . and I actually need to ask a favor of all of you. I believe that for me to get well will require more than just the physical and mental work I do -- I believe I need to have some help from the Divine. So, if you'd pray for me to start healing and to get to 100%, I'd appreciate it. It doesn't matter what religion you are, if you'd just keep on praying for that I will be forever indebted.
l_l
Monday, June 23, 2008
Blog #10--On A Short Hiatus
Hi everyone. Thanks for the continued outpouring of support. I've never appreciated how loved I am and I will try to remember that when I'm having a bad time.
Saturday I got in a car accident. Probably the worst thing that could happen to a person in my position. Thank the Divine we were not driving. We were in line behind a car in front of us to turn out of a parking lot. For some reason the driver in front started backing up and didn't check to see if anyone was behind her. I hit the horn but was not able to back up fast enough.
The first thought was 'crap, my car' and then I felt my neck. It felt like someone took a zipper and pulled it from my lower back all the way up to the back of my ear. It was like a zipper on fire. The lady driving was nice but her husband was a jackass and drunk as a skunk. He didn't want to wait for a police officer but she did stay. They hit me squarely where the front license place is and it made a crack on the top side of the bumper in the shape of a smile.
I'm not worried about that part although it was very stressful (remember our mantra 'no stress') but know it will get fixed. But I was very upset about my neck. My doctor examined me today and told me it's about a good week setback. She said it's so full of inflammation now that the scar tissue won't keep moving out until the inflammation stops. It's frustrating to me because I've only been here 2 weeks and now I've lost one?
Anyway, it's starting to feel better but I was told specifically to take it *extremely* easy and so I won't be answering emails or calls much for the good part of the week. However, I love hearing from all of you that if you don't mind waiting for my response then please send away.
Thanks for your support. I think I may be being tested on a higher level and I am going to try very hard to not flunk the exam.
l_l
Saturday I got in a car accident. Probably the worst thing that could happen to a person in my position. Thank the Divine we were not driving. We were in line behind a car in front of us to turn out of a parking lot. For some reason the driver in front started backing up and didn't check to see if anyone was behind her. I hit the horn but was not able to back up fast enough.
The first thought was 'crap, my car' and then I felt my neck. It felt like someone took a zipper and pulled it from my lower back all the way up to the back of my ear. It was like a zipper on fire. The lady driving was nice but her husband was a jackass and drunk as a skunk. He didn't want to wait for a police officer but she did stay. They hit me squarely where the front license place is and it made a crack on the top side of the bumper in the shape of a smile.
I'm not worried about that part although it was very stressful (remember our mantra 'no stress') but know it will get fixed. But I was very upset about my neck. My doctor examined me today and told me it's about a good week setback. She said it's so full of inflammation now that the scar tissue won't keep moving out until the inflammation stops. It's frustrating to me because I've only been here 2 weeks and now I've lost one?
Anyway, it's starting to feel better but I was told specifically to take it *extremely* easy and so I won't be answering emails or calls much for the good part of the week. However, I love hearing from all of you that if you don't mind waiting for my response then please send away.
Thanks for your support. I think I may be being tested on a higher level and I am going to try very hard to not flunk the exam.
l_l
Thursday, June 19, 2008
Blog #9--Adjustments, Adjustments, & More Adjustments
Before I start the update I need to say something far more important than my small world of FM.
This past week my close friend (since age 5) lost her step-father after a long battle with cancer. Her father was a kind man and supported all of us especially during our teen years. I remember his wedding to my friend's mom like it was yesterday and a trip to Disneyland that he took us on.
So I ask this, the next time you experience a moment of happiness, do me a favor and dedicate it to my friend's father, Ray. Ray, I know you are in a much better place and free from bodily pain. Don't worry about your family as we will take care of them and all of us will be happy to see you when it is our time to pass. All my happy moments today are for you, Ray. Be in peace.
---------------------------------------------------------------
I know I haven't written in about a week and I apologize for that. It's been a week filled with so many adjustments that I cannot possibly list all of them here. . so this probably will be a long post.
First, I need to answer the basic question I keep getting asked 'what do they do to you at each treatment?' and the answer is it's a modified version of chiropractic adjustments and the key is not only in the modified adjustments but the frequency. We get 14 adjustments a week and for the duration of somewhere between 3-5 months. That is how long it takes for your body to 'reset' itself into the correct spinal position. Then once it's re-set you must go into a basic hibernation stage for up to a year to not knock it out of alignment. . super important. . . so I hopefully will come back feeling better but will be actually more gimped up than I was before I left (hopefully my demeanor will be improved--ha ha). .the rule of thumb is no work like sweeping, mopping, or heavy lifting. Big rule of thumb - your elbows cannot be raised over you shoulders for a *minimum* of a year. . that is far more disabling than you realize but I'm happy to comply.
Anyway, this week has been more than just physical, chiropractic adjustments. It has been one of an adjustment of attitude (hopefully for the better) and also an adjustment to my surroundings.
I was very, very depressed over the weekend and reached my breaking point on Sunday afternoon. I had a panic attack and cried for many hours -- all of which severely set back my progress. Monday morning I woke up extremely tired and begged my dad to let me skip the morning treatments. That was an academic point as soon I tried to feed my diabetic cat, Matt, and could not find him. We live in a motor home with about 200 sq. feet and we pulled this place apart. I was hysterical. I had opened the door during the night to put out some trash but I was sure I never saw him run out. Matt is a disabled cat who, aside from diabetes, is very cross-eyed and cannot see well. I knew if he had gotten out, we'd never find him. To make it worse, as I went outside in my PJs, I saw coyote tracks up to my window.
My friend from the clinic lives 3 doors down and she came out to walk to the clinic and saw me in extreme distress. She was holding me up and walking me back to my motor home (I was in a full blown panic attack) and my dad walked out just then and said he found him. That little stinker had gotten inside of the steering column of the motor home and it took us an hour to get him out. Needless to say I missed the AM treatments. However, I did get 2 in the PM and went home very worn out.
Tuesday AM I awoke and found myself extremely dizzy. If I even moved my eyes to one side or the other I would feel like I needed to throw up. I managed to get through my 2 treatments and came home and slept for a while. When I woke up the dizziness was extremely bad and even with my eyes closed I was now getting physically ill just shifting my eyes under the lids. My dad wasn't home so I called the clinic just to see if I could talk to a patient coordinator. I got a hold of Susie, who is the best office admin. I have ever met. She immediately went to get Dr. Whitcomb (the big wig, not my daily doctor). I figured he'd talk to me a bit over the phone but instead he asked for directions to my house and he & Susie were here in 10 minutes. He first gave me a lot of care by letting me sob in his arms for a bit (I am an emotional mess here so give me a break) & then he gave me an adjustment and the dizziness was gone, just like that. I was super sore but felt so relieved and also was just at a loss for how much these people really care about us (their patients). I have dealt with a lot of doctors in my life and I never have had anyone respond to me this way. It sealed the deal and I decided I was going to stick this out. Prior to that, I had really thought I would not stay the duration.
The rest of the week's treatments were pretty standard. I found out a lot of information and also got to know a few of the patients a lot better. I've started to sleep better and have actually slept through a few nights without waking up to take pain meds. I've not taken several doses of my Lortab but don't get too excited, it's still here and as I mentioned it's a roller coaster ride.
Some other progress that is notable. . I have walked over 25 miles during the 2 weeks I've been here. Just taking the short 1.5 miles round trip to the clinic 3 times a day it adds up. I've lost 4 pounds this week and according to my doctor my skin looks less gaunt and has more color (i.e. - proper blood circulation). Now to the sort of sensitive subjects that I promised to be open about. . I have had 5 normal bowel movements since I started treatment. In case you didn't know my prior score, I had not had a normal bowel movement w/o an enema for the past 4 years. So this is a big deal. After Tuesday I had basically cleaned myself out from the mouth and from the other end due to the dizziness. So I tried a little test and stopped taking all my anti-constipation meds (Colace, flaxseed, etc). Today I had a normal bowel movement and I literally shit my pants due to happiness (ok, not really but it sounded funny). For anyone who thinks being constipated isn't a big deal, you try walking around with all the crap in your system and can't get it out. Ain't fun folks.
Oh yeah, and probably a notable thing here -- for 6 days in a row I have gotten up at 7 AM, taken a shower, gotten dressed/ready/, and walked to clinic. Prior to this, I have not gotten out of bed before noon to 1 PM for the past 2 years w/ only a few necessary exceptions so for me to actually be handling the clinic schedule alone is nothing short of a miracle.
Now some social progress. As you all are aware, I hated it here as of last week. Well, I have finally started adjusting. First was a random circumstance that turned out to be really cool. On Thursday I was home from treatment by noon and quite tired. The night before we got some new neighbors. . an awesome couple from the Netherlands. They had flown into Vegas and had rented an RV to drive up to San Francisco and then back down on Highway 1. They had fiasco after fiasco up until leaving Las Vegas. They got to South Lake Tahoe (SLT) and figured they'd rent bicycles to get around for the day or 2 they were staying here. Well, SLT being so cool as it is, the rentals were *ridiculous*. . $9 an hour and no rentals over night. They then were stuck at an RV park and had already paid to stay the allotted nights. So I told them to take my car and go and have fun. They thought I was nuts but I believe in paying it forward as much as possible.
I finally convinced them to take the car and told them to just come home whenever and leave the keys under the seat & lock the door. Ok, I will admit, I figured I had their RV as collateral. . but I knew they were cool. Last night they came knocking on my door and gave me a beautiful terra cotta pot filled with flowers -- the exact ones I miss so much from home. I also had mentioned in passing that I loved hummingbirds and they had no idea what that meant but they found a beautiful, green blown glass hummingbird feeder and bought it for me. They stayed over and we talked until 12:30 AM. I was tired but went to bed knowing I had met 2 people who will be friends for life. It was a good feeling.
Today I made 2 connections that surprised me. First, I mentioned a young man at the clinic that I called 'Mark'. Anyway, today Mark and I had the most personal and unbiased talk about religion. He comes from a Mormon perspective, as I come from a Wiccan perspective. We not only met in the middle but I realized that I had a lot of perceptions about the Mormon religion that were just not true at all. I'm not talking about crazy off-shoot sects with polygamy, I'm talking about things like thinking that Mormons thought that their religion was the only religion and if you weren't Mormon you went to hell. I was *totally* wrong on all of that and I was actually quite impressed with many of the basic tenets of their belief system. I even asked for a copy of them because it fascinates me. I gave Mark a lift home so I could meet his wife before she left back to home but she was busy with their new baby so I said I'd meet her another time. He leaves in 2 weeks and I really think I will cry when he leaves as I feel like I met a really good person who cares not just about humanity but also about me. We also have the bond of FM and although we hate the reason, there is some what of a silver lining. In my upcoming year+ of hibernation maybe I'll take a class about ancient and modern day religions. . seems to really interest me.
The last social adjustment I had was that of an 11 year old girl, whom I'll call 'Kristen'. She is a granddaughter of a lady who attends the clinic and she is staying with them for the summer. To make a long story short, she is from a very dysfunctional family and believes her dad wants nothing to do w/ her. After hearing her full story I realize that her mother took him to court to release him of his parental rights. She has a lot of problems such as ADD and usually I do not bond with children. However, this young lady just got to me. I was super tired after dinner and she was outside talking with my dad and some other neighbors. She ended up coming inside and sitting on my bed talking to me for 2 hours and sharing her secrets with me (I had to even shut the door). She is a beautiful young lady who has no self esteem and from what I can tell is not getting an validation from home. I feel compelled to be her friend, or some sort of mentor for her and we decided to write letters via snail mail for the next few years. I promised her that when she was of legal age I would help her find her dad. I know I just met her but I swear that I will keep my promise to her come hell or high water. She isn't some charity case, but rather, a diamond in the rough. I really saw a connection with her when we interacted with my cats. I told her she needed to be very quiet in order for my cats (Mojo and Matt) to let her pet them. She knows she has ADD and actually has learned how to calm herself to not get overly excited or start talking non-stop (she thought that doing this self-calming was wrong and stupid and I had to explain to her that most adults are unable to achieve that kind of hold over their emotional system--see what I mean about lack of self confidence and no validation??). I honestly did not think the cats would respond but she really calmed herself down and they both allowed her to pet them. . Matt even purred for her!! At that point she said words I have felt were the basis of my entire belief system which were, 'I think animals are pure souls and not messed up like humans' . Admittedly, I would have dropped the last part but she gets it and I can see that she has complete potential to make sure her life doesn't run off track (given her family situation I can see why that would be of concern). I felt a very strong bond with her and have encouraged her to come by anytime (something I won't even do with my best friends at home). . and I am not only charmed by this young soul but am also humbled. She has had a hell of a time and not just from what she told me, I'd heard some of this from her grandparents. I see this personality and want to have self confidence brewing inside her and I hope to be a major player in seeing that young lady emerge. She asked if she could call me "Mo Mo" -- not sure why but it was really endearing to me.
I guess with all the driving around this week I have finally found the pretty spots of SLT and did finally break down and take some photos of my surroundings and sent them to my close friends.
So, with that being said, it's been a week of adjustments of all kinds and who knows what next week will bring.
l_l
This past week my close friend (since age 5) lost her step-father after a long battle with cancer. Her father was a kind man and supported all of us especially during our teen years. I remember his wedding to my friend's mom like it was yesterday and a trip to Disneyland that he took us on.
So I ask this, the next time you experience a moment of happiness, do me a favor and dedicate it to my friend's father, Ray. Ray, I know you are in a much better place and free from bodily pain. Don't worry about your family as we will take care of them and all of us will be happy to see you when it is our time to pass. All my happy moments today are for you, Ray. Be in peace.
---------------------------------------------------------------
I know I haven't written in about a week and I apologize for that. It's been a week filled with so many adjustments that I cannot possibly list all of them here. . so this probably will be a long post.
First, I need to answer the basic question I keep getting asked 'what do they do to you at each treatment?' and the answer is it's a modified version of chiropractic adjustments and the key is not only in the modified adjustments but the frequency. We get 14 adjustments a week and for the duration of somewhere between 3-5 months. That is how long it takes for your body to 'reset' itself into the correct spinal position. Then once it's re-set you must go into a basic hibernation stage for up to a year to not knock it out of alignment. . super important. . . so I hopefully will come back feeling better but will be actually more gimped up than I was before I left (hopefully my demeanor will be improved--ha ha). .the rule of thumb is no work like sweeping, mopping, or heavy lifting. Big rule of thumb - your elbows cannot be raised over you shoulders for a *minimum* of a year. . that is far more disabling than you realize but I'm happy to comply.
Anyway, this week has been more than just physical, chiropractic adjustments. It has been one of an adjustment of attitude (hopefully for the better) and also an adjustment to my surroundings.
I was very, very depressed over the weekend and reached my breaking point on Sunday afternoon. I had a panic attack and cried for many hours -- all of which severely set back my progress. Monday morning I woke up extremely tired and begged my dad to let me skip the morning treatments. That was an academic point as soon I tried to feed my diabetic cat, Matt, and could not find him. We live in a motor home with about 200 sq. feet and we pulled this place apart. I was hysterical. I had opened the door during the night to put out some trash but I was sure I never saw him run out. Matt is a disabled cat who, aside from diabetes, is very cross-eyed and cannot see well. I knew if he had gotten out, we'd never find him. To make it worse, as I went outside in my PJs, I saw coyote tracks up to my window.
My friend from the clinic lives 3 doors down and she came out to walk to the clinic and saw me in extreme distress. She was holding me up and walking me back to my motor home (I was in a full blown panic attack) and my dad walked out just then and said he found him. That little stinker had gotten inside of the steering column of the motor home and it took us an hour to get him out. Needless to say I missed the AM treatments. However, I did get 2 in the PM and went home very worn out.
Tuesday AM I awoke and found myself extremely dizzy. If I even moved my eyes to one side or the other I would feel like I needed to throw up. I managed to get through my 2 treatments and came home and slept for a while. When I woke up the dizziness was extremely bad and even with my eyes closed I was now getting physically ill just shifting my eyes under the lids. My dad wasn't home so I called the clinic just to see if I could talk to a patient coordinator. I got a hold of Susie, who is the best office admin. I have ever met. She immediately went to get Dr. Whitcomb (the big wig, not my daily doctor). I figured he'd talk to me a bit over the phone but instead he asked for directions to my house and he & Susie were here in 10 minutes. He first gave me a lot of care by letting me sob in his arms for a bit (I am an emotional mess here so give me a break) & then he gave me an adjustment and the dizziness was gone, just like that. I was super sore but felt so relieved and also was just at a loss for how much these people really care about us (their patients). I have dealt with a lot of doctors in my life and I never have had anyone respond to me this way. It sealed the deal and I decided I was going to stick this out. Prior to that, I had really thought I would not stay the duration.
The rest of the week's treatments were pretty standard. I found out a lot of information and also got to know a few of the patients a lot better. I've started to sleep better and have actually slept through a few nights without waking up to take pain meds. I've not taken several doses of my Lortab but don't get too excited, it's still here and as I mentioned it's a roller coaster ride.
Some other progress that is notable. . I have walked over 25 miles during the 2 weeks I've been here. Just taking the short 1.5 miles round trip to the clinic 3 times a day it adds up. I've lost 4 pounds this week and according to my doctor my skin looks less gaunt and has more color (i.e. - proper blood circulation). Now to the sort of sensitive subjects that I promised to be open about. . I have had 5 normal bowel movements since I started treatment. In case you didn't know my prior score, I had not had a normal bowel movement w/o an enema for the past 4 years. So this is a big deal. After Tuesday I had basically cleaned myself out from the mouth and from the other end due to the dizziness. So I tried a little test and stopped taking all my anti-constipation meds (Colace, flaxseed, etc). Today I had a normal bowel movement and I literally shit my pants due to happiness (ok, not really but it sounded funny). For anyone who thinks being constipated isn't a big deal, you try walking around with all the crap in your system and can't get it out. Ain't fun folks.
Oh yeah, and probably a notable thing here -- for 6 days in a row I have gotten up at 7 AM, taken a shower, gotten dressed/ready/, and walked to clinic. Prior to this, I have not gotten out of bed before noon to 1 PM for the past 2 years w/ only a few necessary exceptions so for me to actually be handling the clinic schedule alone is nothing short of a miracle.
Now some social progress. As you all are aware, I hated it here as of last week. Well, I have finally started adjusting. First was a random circumstance that turned out to be really cool. On Thursday I was home from treatment by noon and quite tired. The night before we got some new neighbors. . an awesome couple from the Netherlands. They had flown into Vegas and had rented an RV to drive up to San Francisco and then back down on Highway 1. They had fiasco after fiasco up until leaving Las Vegas. They got to South Lake Tahoe (SLT) and figured they'd rent bicycles to get around for the day or 2 they were staying here. Well, SLT being so cool as it is, the rentals were *ridiculous*. . $9 an hour and no rentals over night. They then were stuck at an RV park and had already paid to stay the allotted nights. So I told them to take my car and go and have fun. They thought I was nuts but I believe in paying it forward as much as possible.
I finally convinced them to take the car and told them to just come home whenever and leave the keys under the seat & lock the door. Ok, I will admit, I figured I had their RV as collateral. . but I knew they were cool. Last night they came knocking on my door and gave me a beautiful terra cotta pot filled with flowers -- the exact ones I miss so much from home. I also had mentioned in passing that I loved hummingbirds and they had no idea what that meant but they found a beautiful, green blown glass hummingbird feeder and bought it for me. They stayed over and we talked until 12:30 AM. I was tired but went to bed knowing I had met 2 people who will be friends for life. It was a good feeling.
Today I made 2 connections that surprised me. First, I mentioned a young man at the clinic that I called 'Mark'. Anyway, today Mark and I had the most personal and unbiased talk about religion. He comes from a Mormon perspective, as I come from a Wiccan perspective. We not only met in the middle but I realized that I had a lot of perceptions about the Mormon religion that were just not true at all. I'm not talking about crazy off-shoot sects with polygamy, I'm talking about things like thinking that Mormons thought that their religion was the only religion and if you weren't Mormon you went to hell. I was *totally* wrong on all of that and I was actually quite impressed with many of the basic tenets of their belief system. I even asked for a copy of them because it fascinates me. I gave Mark a lift home so I could meet his wife before she left back to home but she was busy with their new baby so I said I'd meet her another time. He leaves in 2 weeks and I really think I will cry when he leaves as I feel like I met a really good person who cares not just about humanity but also about me. We also have the bond of FM and although we hate the reason, there is some what of a silver lining. In my upcoming year+ of hibernation maybe I'll take a class about ancient and modern day religions. . seems to really interest me.
The last social adjustment I had was that of an 11 year old girl, whom I'll call 'Kristen'. She is a granddaughter of a lady who attends the clinic and she is staying with them for the summer. To make a long story short, she is from a very dysfunctional family and believes her dad wants nothing to do w/ her. After hearing her full story I realize that her mother took him to court to release him of his parental rights. She has a lot of problems such as ADD and usually I do not bond with children. However, this young lady just got to me. I was super tired after dinner and she was outside talking with my dad and some other neighbors. She ended up coming inside and sitting on my bed talking to me for 2 hours and sharing her secrets with me (I had to even shut the door). She is a beautiful young lady who has no self esteem and from what I can tell is not getting an validation from home. I feel compelled to be her friend, or some sort of mentor for her and we decided to write letters via snail mail for the next few years. I promised her that when she was of legal age I would help her find her dad. I know I just met her but I swear that I will keep my promise to her come hell or high water. She isn't some charity case, but rather, a diamond in the rough. I really saw a connection with her when we interacted with my cats. I told her she needed to be very quiet in order for my cats (Mojo and Matt) to let her pet them. She knows she has ADD and actually has learned how to calm herself to not get overly excited or start talking non-stop (she thought that doing this self-calming was wrong and stupid and I had to explain to her that most adults are unable to achieve that kind of hold over their emotional system--see what I mean about lack of self confidence and no validation??). I honestly did not think the cats would respond but she really calmed herself down and they both allowed her to pet them. . Matt even purred for her!! At that point she said words I have felt were the basis of my entire belief system which were, 'I think animals are pure souls and not messed up like humans' . Admittedly, I would have dropped the last part but she gets it and I can see that she has complete potential to make sure her life doesn't run off track (given her family situation I can see why that would be of concern). I felt a very strong bond with her and have encouraged her to come by anytime (something I won't even do with my best friends at home). . and I am not only charmed by this young soul but am also humbled. She has had a hell of a time and not just from what she told me, I'd heard some of this from her grandparents. I see this personality and want to have self confidence brewing inside her and I hope to be a major player in seeing that young lady emerge. She asked if she could call me "Mo Mo" -- not sure why but it was really endearing to me.
I guess with all the driving around this week I have finally found the pretty spots of SLT and did finally break down and take some photos of my surroundings and sent them to my close friends.
So, with that being said, it's been a week of adjustments of all kinds and who knows what next week will bring.
l_l
Saturday, June 14, 2008
Blog #8--Untitled
(note: blog was written at 2:03 am but Internet services were down)
Today is one of those days where the depression takes over and I lay in bed all the time. I thought that being away from home might leave the depression there but no, it hasn't. Yesterday I had the IBD side of FM bothering me and was nauseous and throwing up a lot. I still had to go to 3 treatments and that sucked. My doctor said I did too much the day before (drove around the lake) and to rest more. The advice wasn't needed. I came home at 4 pm yesterday and slept until 12 pm today. I woke up feeling the blackness & shadows tainting everything.
I tried to watch TV but it was boring and the darkness kept intruding on my attention. This was my first day off and I am at the lowest point since I've been here.
I'm so lonely. I am home sick and I feel like I am missing the summer. It's so cold here. I feel regretful for all of the different things that have happened over the past 10 some years that lead me to this point. Regret that I cannot correct and connections I cannot make or re-make no matter how badly I want to.
Of course I cannot be feeling better after less than a week of treatment but I really cannot imagine being here through September. I feel hopeless and I don't want to be here. Actually, I don't want to be anywhere. I wish I could leave this place, this world. I would be free of my ailments, heartaches & suffering and my family would be free of the burden I've become.
As I've mentioned before, I tend to use music as my voice and so I'm going to post the following lyrics from an older Alternative group 'Toad the Wet Sprocket', the song is titled 'Fall Down'. Note--the only part of the lyrics I do not relate to is 'she even hates her friends', clearly I don't and actually love them dearly. Here we go:
'Fall Down' by Toad the Wet Sprocket:
She said I'm fine, I'm okay cover up your trembling hands
There's indecision when you know you ain't got nothing left
When the good times never stay
And the cheap thrills always seem to fade away
When will we fall
When will we fall down
Jump back, got to get out of here
Been too long this time
Jump back, got to get out of here
When will, when will we fall down
She hates her life, she hates her skin, she even hates her friends
Tries to hold on to all the reputations she can't mend
And there's some chance we could fail
But the last time someone was always there for bail
When will we fall
When will we fall down
Jump back, got to get out of here
Been too long this time
Jump back, got to get out of here
When will, when will we fall down
She said I'm fine, I'm okay cover up your trembling hands
There's indecision when you know you ain't got nothing left
For the last time conscience calls
For a good friend I was never there at all
When will we fall
When will we fall down
l_l
Thursday, June 12, 2008
Blog #7--No Pain, No Gain
Sorry the updates have been slow. A lot of it is due to treatment but mainly because our Internet connection is sketchy. I think South Lake Tahoe is gorgeous but I don't get the appeal. It's just like living in Los Alamos or the Jemez with a lake. The lake is usually 42 degrees year round so who's going to be in that water? It is stunning to see but I'd rather be looking at Diamond Head.
Tuesday was my first day of repeated treatments and they were *brutal*. Dr. W. doesn't do the daily adjustments and has 2 other doctors on staff. I was lucky to get the stunning Dr. Marcel. She is awesome and extremely nice. We hit it off immediately. We're the same age (has the same birthday as my J.) and both are married to younger men.
Tuesday she did the pressure points on the TMJ area of my jaw on both sides. There is a technical name for this part of your body but I don't remember it. It's the main intersection with the menenges and is very painful to treat. Then I got to adjustments of my neck, one on each side. I was sore after the treatments and she said it'd probably get worse before it got better. She is currently breaking up the scar tissue that is one of the things blocking the channel to the brain. By the time I had walked back home I was in *severe* pain. Remember the described "neck headaches" - well, this one was the worst one I have ever had in my life. I remained drugged up hourly and packed the area with ice. However, I am very restricted in movement of my neck and I am in a basic form of traction at all times. It was miserable and unfortunately not the last one I am going to have. She explained that until all the scar tissue is broken up and out, along w/ the inflammation is down; I will continue to have the bad headaches. There is a light at the end of the tunnel but you gotta buck up and take the pain. It seems alright to me now but when the next one comes on, I will feel like dying.
I have basically been in life bootcamp. I have not had a normal routine for well over a year and a half. Now I must be up at 7 AM every day and have to be dressed, look marginally okay, and then walk 1 mile to the clinic. So far I've been able to do this daily w/o much problem and this confuses me. . why can't I do that at home? Clearly there is a very compelling reason for me to get up and go each day but wasn't work also a compelling reason? I haven't had a day where I've said 'I just can't go today' and I'm wondering if my home environment has caused me to be more homebound than I needed to be. I guess it's possible that in the past 3 days I may be feeling better but from what I know of this disease, it does not come that easily.
I've met an entire spectrum of people. For privacy's sake, I am giving them different names. 'Mark' is a young man in his late 20's, with a wife and kiddo who works at a national Lab (not LANL). I feel horrible for him because people already do not believe this is a real disease but it's very unusual for men to get it (80% women) and so I think he had years of people giving him a hard time before getting properly diagnosed. Poor guy has to actually take his laptop and work at the clinic while he's there. He says he needs to go back home within 2 weeks and I do not see how he will be better by then. . . but what can you do? I have always felt grateful and extremely blessed to have J. and my parents support. . but now that I am here I can tell you that 90% of these people are here alone. They get their 3 treatments per day and then have a motel to go to and have to take care of everything themselves. There have been days where I could not do anything and thank goodness my dad is here but I feel for these people.
I met a young woman, I'll call her 'Laura' and she is 21 and very sick. The interesting part is that she is bi-polar and we take the same drug protocol. I have never met anyone else who takes Seroquel and so it was interesting to talk to her. Again, she is here all alone and in the early stages of treatment, as I am, and is relying on herself for everything. Most of these people have been bedridden at some point so this is not a trivial thing. Even trying to get lunch would be a huge deal.
The last patient of interest I'll call 'Nina'. 'Nina' came here weighing almost 300 pounds. She was on steroids (????? never heard of that for FM treatment) and has been here for several months. However, she is now a size 2 and back to life. She came in a wheelchair and now is back on track of being a tri-athlete. I would be skeptical about her weight loss and miraculous progress but she showed me her drivers license and I about fell over. The person in that photo had her face but was honestly 200 pounds heavier. She just started back on her athletic routine but lost her weight just due to treatment and getting off the meds.
I guess the other big thing is that I have to be so conscious of my neck area. It must be kept in line with your spine *at all times*. Not easy. . you have to sleep on a very flat pillow (I usually sleep w/ 3), you can't bend your neck back to even rinse your hair off in the shower, you can't lay down on the couch to read a book, you have to be sitting up all the time and have to maintain this vigilant posture for a year at minimum.
Some would say that the clinic is just being extreme in that regard but my last story about other patients is about a lady I'll call 'Claire'. Claire was successfully treated last year and on her way home she caught a flu bug on the airplane. She got so sick that she had to go to ER and along the way, the medics accidentally bumped her head inside of the ambulance. She felt her neck snap and bam! FM was back in full force. She's here for a shorter time now to get back into shape but it really makes it clear about how precarious this whole situation can be.
I haven't figured out what started my FM. I do believe there is a relationship between it and my Dermatomyositis. I also have had surgeries, have fallen down the basement stairs and hit my head, have had a car accident w/ a neck injury, and have fallen and hit my head really hard when snow boarding. I guess it's neither here nor there what started it but I believe that for the rest of my life I am going to be very careful about jarring movements to my head.
FM has been classified as a real disease by the CDC and is considered an auto-immune disease. . so technically you never get rid of it and it just goes dormant when you're in 'remission'. I hear people talk about flare ups and I know that we'll be sent home with the task of finding a local chiropractor that is willing to work with the doctors here when we have one. I am very curious as to how I will react to the winter. . as usually it makes me miserable.
Speaking of winter. . it's very important to move a motor home prior to bad weather and it starts to snow here by Labor Day. There is a very good chance I will be here through September so I am not sure how we'll handle that.
There is more that I want to say on the dynamics of the patients but I am tired and don't feel like rehashing it. I'll try and remember to update everyone the next time I write. In short, there are many patients here who are well into their 50's - 70's but tend to act like a 5 year old on the playground. It is so bad that it's almost funny but it's truly sad that these people are here and probably staying longer than they need to because they have nothing to go back to. I have felt like smacking one particular patient to the moon several times (and I've only been here since Monday) but have decided to just give her the rope and trust me, she's already hung herself.
I need to go to bed. I have a bad feeling tomorrow will be a hurting day due to my current neck pain in my right side but that's part of the deal in order to get well. I hope this is the real deal and that I can manage to change my lifestyle to maintain my health when (and if) I get it back.
I miss all of you and miss home. I really miss my pets and the summer. It's not nearly as warm of a summer up here.
l_l
Tuesday was my first day of repeated treatments and they were *brutal*. Dr. W. doesn't do the daily adjustments and has 2 other doctors on staff. I was lucky to get the stunning Dr. Marcel. She is awesome and extremely nice. We hit it off immediately. We're the same age (has the same birthday as my J.) and both are married to younger men.
Tuesday she did the pressure points on the TMJ area of my jaw on both sides. There is a technical name for this part of your body but I don't remember it. It's the main intersection with the menenges and is very painful to treat. Then I got to adjustments of my neck, one on each side. I was sore after the treatments and she said it'd probably get worse before it got better. She is currently breaking up the scar tissue that is one of the things blocking the channel to the brain. By the time I had walked back home I was in *severe* pain. Remember the described "neck headaches" - well, this one was the worst one I have ever had in my life. I remained drugged up hourly and packed the area with ice. However, I am very restricted in movement of my neck and I am in a basic form of traction at all times. It was miserable and unfortunately not the last one I am going to have. She explained that until all the scar tissue is broken up and out, along w/ the inflammation is down; I will continue to have the bad headaches. There is a light at the end of the tunnel but you gotta buck up and take the pain. It seems alright to me now but when the next one comes on, I will feel like dying.
I have basically been in life bootcamp. I have not had a normal routine for well over a year and a half. Now I must be up at 7 AM every day and have to be dressed, look marginally okay, and then walk 1 mile to the clinic. So far I've been able to do this daily w/o much problem and this confuses me. . why can't I do that at home? Clearly there is a very compelling reason for me to get up and go each day but wasn't work also a compelling reason? I haven't had a day where I've said 'I just can't go today' and I'm wondering if my home environment has caused me to be more homebound than I needed to be. I guess it's possible that in the past 3 days I may be feeling better but from what I know of this disease, it does not come that easily.
I've met an entire spectrum of people. For privacy's sake, I am giving them different names. 'Mark' is a young man in his late 20's, with a wife and kiddo who works at a national Lab (not LANL). I feel horrible for him because people already do not believe this is a real disease but it's very unusual for men to get it (80% women) and so I think he had years of people giving him a hard time before getting properly diagnosed. Poor guy has to actually take his laptop and work at the clinic while he's there. He says he needs to go back home within 2 weeks and I do not see how he will be better by then. . . but what can you do? I have always felt grateful and extremely blessed to have J. and my parents support. . but now that I am here I can tell you that 90% of these people are here alone. They get their 3 treatments per day and then have a motel to go to and have to take care of everything themselves. There have been days where I could not do anything and thank goodness my dad is here but I feel for these people.
I met a young woman, I'll call her 'Laura' and she is 21 and very sick. The interesting part is that she is bi-polar and we take the same drug protocol. I have never met anyone else who takes Seroquel and so it was interesting to talk to her. Again, she is here all alone and in the early stages of treatment, as I am, and is relying on herself for everything. Most of these people have been bedridden at some point so this is not a trivial thing. Even trying to get lunch would be a huge deal.
The last patient of interest I'll call 'Nina'. 'Nina' came here weighing almost 300 pounds. She was on steroids (????? never heard of that for FM treatment) and has been here for several months. However, she is now a size 2 and back to life. She came in a wheelchair and now is back on track of being a tri-athlete. I would be skeptical about her weight loss and miraculous progress but she showed me her drivers license and I about fell over. The person in that photo had her face but was honestly 200 pounds heavier. She just started back on her athletic routine but lost her weight just due to treatment and getting off the meds.
I guess the other big thing is that I have to be so conscious of my neck area. It must be kept in line with your spine *at all times*. Not easy. . you have to sleep on a very flat pillow (I usually sleep w/ 3), you can't bend your neck back to even rinse your hair off in the shower, you can't lay down on the couch to read a book, you have to be sitting up all the time and have to maintain this vigilant posture for a year at minimum.
Some would say that the clinic is just being extreme in that regard but my last story about other patients is about a lady I'll call 'Claire'. Claire was successfully treated last year and on her way home she caught a flu bug on the airplane. She got so sick that she had to go to ER and along the way, the medics accidentally bumped her head inside of the ambulance. She felt her neck snap and bam! FM was back in full force. She's here for a shorter time now to get back into shape but it really makes it clear about how precarious this whole situation can be.
I haven't figured out what started my FM. I do believe there is a relationship between it and my Dermatomyositis. I also have had surgeries, have fallen down the basement stairs and hit my head, have had a car accident w/ a neck injury, and have fallen and hit my head really hard when snow boarding. I guess it's neither here nor there what started it but I believe that for the rest of my life I am going to be very careful about jarring movements to my head.
FM has been classified as a real disease by the CDC and is considered an auto-immune disease. . so technically you never get rid of it and it just goes dormant when you're in 'remission'. I hear people talk about flare ups and I know that we'll be sent home with the task of finding a local chiropractor that is willing to work with the doctors here when we have one. I am very curious as to how I will react to the winter. . as usually it makes me miserable.
Speaking of winter. . it's very important to move a motor home prior to bad weather and it starts to snow here by Labor Day. There is a very good chance I will be here through September so I am not sure how we'll handle that.
There is more that I want to say on the dynamics of the patients but I am tired and don't feel like rehashing it. I'll try and remember to update everyone the next time I write. In short, there are many patients here who are well into their 50's - 70's but tend to act like a 5 year old on the playground. It is so bad that it's almost funny but it's truly sad that these people are here and probably staying longer than they need to because they have nothing to go back to. I have felt like smacking one particular patient to the moon several times (and I've only been here since Monday) but have decided to just give her the rope and trust me, she's already hung herself.
I need to go to bed. I have a bad feeling tomorrow will be a hurting day due to my current neck pain in my right side but that's part of the deal in order to get well. I hope this is the real deal and that I can manage to change my lifestyle to maintain my health when (and if) I get it back.
I miss all of you and miss home. I really miss my pets and the summer. It's not nearly as warm of a summer up here.
l_l
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