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
Tuesday, August 26, 2008
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
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