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