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