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