Sorry the updates have been slow. A lot of it is due to treatment but mainly because our Internet connection is sketchy. I think South Lake Tahoe is gorgeous but I don't get the appeal. It's just like living in Los Alamos or the Jemez with a lake. The lake is usually 42 degrees year round so who's going to be in that water? It is stunning to see but I'd rather be looking at Diamond Head.
Tuesday was my first day of repeated treatments and they were *brutal*. Dr. W. doesn't do the daily adjustments and has 2 other doctors on staff. I was lucky to get the stunning Dr. Marcel. She is awesome and extremely nice. We hit it off immediately. We're the same age (has the same birthday as my J.) and both are married to younger men.
Tuesday she did the pressure points on the TMJ area of my jaw on both sides. There is a technical name for this part of your body but I don't remember it. It's the main intersection with the menenges and is very painful to treat. Then I got to adjustments of my neck, one on each side. I was sore after the treatments and she said it'd probably get worse before it got better. She is currently breaking up the scar tissue that is one of the things blocking the channel to the brain. By the time I had walked back home I was in *severe* pain. Remember the described "neck headaches" - well, this one was the worst one I have ever had in my life. I remained drugged up hourly and packed the area with ice. However, I am very restricted in movement of my neck and I am in a basic form of traction at all times. It was miserable and unfortunately not the last one I am going to have. She explained that until all the scar tissue is broken up and out, along w/ the inflammation is down; I will continue to have the bad headaches. There is a light at the end of the tunnel but you gotta buck up and take the pain. It seems alright to me now but when the next one comes on, I will feel like dying.
I have basically been in life bootcamp. I have not had a normal routine for well over a year and a half. Now I must be up at 7 AM every day and have to be dressed, look marginally okay, and then walk 1 mile to the clinic. So far I've been able to do this daily w/o much problem and this confuses me. . why can't I do that at home? Clearly there is a very compelling reason for me to get up and go each day but wasn't work also a compelling reason? I haven't had a day where I've said 'I just can't go today' and I'm wondering if my home environment has caused me to be more homebound than I needed to be. I guess it's possible that in the past 3 days I may be feeling better but from what I know of this disease, it does not come that easily.
I've met an entire spectrum of people. For privacy's sake, I am giving them different names. 'Mark' is a young man in his late 20's, with a wife and kiddo who works at a national Lab (not LANL). I feel horrible for him because people already do not believe this is a real disease but it's very unusual for men to get it (80% women) and so I think he had years of people giving him a hard time before getting properly diagnosed. Poor guy has to actually take his laptop and work at the clinic while he's there. He says he needs to go back home within 2 weeks and I do not see how he will be better by then. . . but what can you do? I have always felt grateful and extremely blessed to have J. and my parents support. . but now that I am here I can tell you that 90% of these people are here alone. They get their 3 treatments per day and then have a motel to go to and have to take care of everything themselves. There have been days where I could not do anything and thank goodness my dad is here but I feel for these people.
I met a young woman, I'll call her 'Laura' and she is 21 and very sick. The interesting part is that she is bi-polar and we take the same drug protocol. I have never met anyone else who takes Seroquel and so it was interesting to talk to her. Again, she is here all alone and in the early stages of treatment, as I am, and is relying on herself for everything. Most of these people have been bedridden at some point so this is not a trivial thing. Even trying to get lunch would be a huge deal.
The last patient of interest I'll call 'Nina'. 'Nina' came here weighing almost 300 pounds. She was on steroids (????? never heard of that for FM treatment) and has been here for several months. However, she is now a size 2 and back to life. She came in a wheelchair and now is back on track of being a tri-athlete. I would be skeptical about her weight loss and miraculous progress but she showed me her drivers license and I about fell over. The person in that photo had her face but was honestly 200 pounds heavier. She just started back on her athletic routine but lost her weight just due to treatment and getting off the meds.
I guess the other big thing is that I have to be so conscious of my neck area. It must be kept in line with your spine *at all times*. Not easy. . you have to sleep on a very flat pillow (I usually sleep w/ 3), you can't bend your neck back to even rinse your hair off in the shower, you can't lay down on the couch to read a book, you have to be sitting up all the time and have to maintain this vigilant posture for a year at minimum.
Some would say that the clinic is just being extreme in that regard but my last story about other patients is about a lady I'll call 'Claire'. Claire was successfully treated last year and on her way home she caught a flu bug on the airplane. She got so sick that she had to go to ER and along the way, the medics accidentally bumped her head inside of the ambulance. She felt her neck snap and bam! FM was back in full force. She's here for a shorter time now to get back into shape but it really makes it clear about how precarious this whole situation can be.
I haven't figured out what started my FM. I do believe there is a relationship between it and my Dermatomyositis. I also have had surgeries, have fallen down the basement stairs and hit my head, have had a car accident w/ a neck injury, and have fallen and hit my head really hard when snow boarding. I guess it's neither here nor there what started it but I believe that for the rest of my life I am going to be very careful about jarring movements to my head.
FM has been classified as a real disease by the CDC and is considered an auto-immune disease. . so technically you never get rid of it and it just goes dormant when you're in 'remission'. I hear people talk about flare ups and I know that we'll be sent home with the task of finding a local chiropractor that is willing to work with the doctors here when we have one. I am very curious as to how I will react to the winter. . as usually it makes me miserable.
Speaking of winter. . it's very important to move a motor home prior to bad weather and it starts to snow here by Labor Day. There is a very good chance I will be here through September so I am not sure how we'll handle that.
There is more that I want to say on the dynamics of the patients but I am tired and don't feel like rehashing it. I'll try and remember to update everyone the next time I write. In short, there are many patients here who are well into their 50's - 70's but tend to act like a 5 year old on the playground. It is so bad that it's almost funny but it's truly sad that these people are here and probably staying longer than they need to because they have nothing to go back to. I have felt like smacking one particular patient to the moon several times (and I've only been here since Monday) but have decided to just give her the rope and trust me, she's already hung herself.
I need to go to bed. I have a bad feeling tomorrow will be a hurting day due to my current neck pain in my right side but that's part of the deal in order to get well. I hope this is the real deal and that I can manage to change my lifestyle to maintain my health when (and if) I get it back.
I miss all of you and miss home. I really miss my pets and the summer. It's not nearly as warm of a summer up here.
l_l
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment