Blog#19-Here's Where The Story Ends (well, sorta)

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

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