A Different Path
I was born in 1940, so am almost 60. My father was an old time chiropractor, who was really very skilled. I had no pain when I grew up, although I did (to my father's consternation) develop scoliosis (curvature of the spine) when I was 12. It was in my mother's side of the family. After I was finally diagnosed at the age of 47, I thought that the A.S. had come only from my mother's side. I remembered a great aunt who was in a wheel chair. She had rheumatoid arthritis. A cousin was blinded in one eye by a fierce attack of iritis and retinitis combined. However, after my Dad's death in 1989, my sister and I talked about our father, and concluded that he must have had A.S. He told us that he had been very sickly as a young man, although as a chiropractor and vegetarian he had apparently developed robust health. However, he was puzzled by his "poker back". Could not bend backwards, although he had good neck movement. He never missed his weekly chiropractic treatments. He had a sling in the back hallway, and every time he passed that, he would put his head in the sling, pull on the handles to raise his feet off the floor, and then pull one way and another to adjust his neck! He also was always on the lookout for his food allergies, was a poor sleeper, and apparently had IBS syndrome. At any rate, he was scrupulous about bowel care, giving himself colonic treatments frequently.
After I had been diagnosed, he told me that his chiropractor said that his neck was anklyosing. He never really complained about pain, and always moved very rapidly. He loved exercise; gardened every day he could and rode his bicycle a lot. He always told us that we could affect our own health. He was a happy guy, and relentlessly positive. He would not let us say we were "sick and tired" of something. We had to say "well and healthy". (And I think he was right.) Anyway, I have followed his example, and have had excellent results with treating A.S. A few years ago, my sister started getting iritis, also. (I get it,too.) Although she had not experienced much pain and stiffening yet, she probably thinks she has the gene marker, also. I had my first back problem when I was in college. I danced the "twist" which was then popular, and experienced terrible pain and stiffness in my lower back. I might have slipped a disk, or maybe A.S., I don't know. Anyway, I went to a chiropractor in town, but did not help.
However, when I went home for Christmas, my Dad cured me, using an old Chiropractic technique called the "Logan method". I was O.K. until I was in my late twenties, married and teaching, and woke up with a terribly inflamed and stiff neck. Doctor didn't know what it was. Again, my Dad fixed me up. Afterwards, often my back just would not feel right, although not anything major. When I was 30,I started yoga, and became completely painfree and flexible in 2 years. We moved, but I went on pretty much O.K. for many years, doing occasional yoga poses as needed, and getting chiropractic care. Then, A.S. hit really hard when I was 47.
In the spring of l987, I suffered extreme pain and stiffness in the neck and shoulder region. I had just been lifting weights with my kids (was very active physically) and thought it was just muscle soreness due to that. When the pain continued, I went to a chiropractor my father (who was also a chiropractor, but lived in another state) recommended. Dr. Walker essentially diagnosed my A.S. He asked my internist for a blood test to confirm. He told me I had the stiffest spine he had ever felt. He thought I was ankylosed from the base of my neck to my tailbone. Until it reached my neck, the A.S. had been pretty painless, altho I had had a chiropractor treat me occasionally for neck and back pain. I also had scholiosis so any back problems I attributed to that.
I started having treatments several times a week, and started yoga lessons with a teacher who specialized in therapeutic yoga. The combination of the two really helped me. Since I was used to alternative medicine (having grown up with a chiropractic) I tried many different approaches besides. I was devastated when I first got the diagnosis, and read the progression and prognosis of A.S. from a medical dictionary. I was very active physically (went to basic climbing school and climbed a mountain; did a lot of vigorous hikes and cross-country skied. I was also employed as a special ed teacher not the most relaxing occupation) and had a couple of grown sons and a lot of friends. I imagined I might have to give up my whole life, which I loved.
Well, 12 years have passed, and I consider myself very fortunate, for I still love my life. I am almost 60, am still teaching, have added a grandson and a gentleman friend who is very loving and supportive. I still hike and ski and do yoga, but have given up mountain climbing (too hard on the joints) and standing on my head in yoga (ditto). These are not terribly big sacrifices.
However, my life is very disciplined in regard to my A.S. selfcare. Many people have told me that they would not be willing to put in the time I do. My reply is that I like an active life and do not like pain. End of story. Here is what I do: Mon-Fri. I do about 45 minutes of yoga before I go to school. These are active poses, not lay down and meditate poses. I take a vigorous yoga class once a week. (I have improved a great deal since that first class.) I go to my chiropractor about every three or four weeks. (Since the beginning, over a period of years, he has been able to open up my thoracic region in my back--from T-one to T-10 and 11. All of these do not open all the time, but they have. This has been a great relief. My sacroiliac joints have stayed open-- probably due to all the hiking I do) I go to my acupuncturist about every other week. (Acupuncture was the only thing that helped iritis, which I still get but the attacks are very light compared to what they were before. After my first acupuncture treatment the pain in my eye went away, and gradually I became free of iritis for 3 years. After having root canal trouble last year, the iritis came back, but the attacks are light and pain free due to the acupuncture.) I also am on an allergy diet recommended by a naturopath. Dairy products and tomatoes just kill me, and there are several other food which don't do me any good. Anyway, like I say, I am very fortunate, because most of the time I feel good. How do I pay for all this? Again, I am very fortunate, because I have insurance that pays 80% of chiropractic, acupuncture and naturopathy care! My acupuncturist, who is also my naturopath, has recommended supplements that really help. She was very big on bowel care before the MD's became aware of it.
Instead of antibiotics, I take a supplement which is supposed to kill bad bacteria in the gut. Believe me, it works. This spring, she ran out, and it was about 3 months before I was able to get it. I didn't think much about not taking it. Then my hips, teeth, eyes and jaw all started to hurt without apparent cause. About that time, I was able to get the supplement. After a day or two, all the pain I was having disappeared. I also take a supplement sometimes which relaxes the colon. I used to get tense at school and get IBS attacks. Haven't had one in a long time. Dr. Shiela also recommended Quercetin, a supplement which is supposed to be both anti-allergy and anti-inflammatory. It works very well for me, combined with glucosomine sulfate, minerals and an occasional Bufferin or allergy tablet as needed. I found out to my distress, however, that supplements are powerful things and one needs to be as careful as when taking medications. Several years ago, I was doing quite well, and attempted a week of house-painting. I wound up with terribly inflamed ribs (note: I don't do house-painting, either) My chiropractor told me I should try grape seed extract because it was a wonderful anti-inflammatory. Well, I kept getting worse and worse until I (who routinely hiked 8-10 miles) could hardly make it half a block. Not only that, but I was in extreme pain.
Anyway, I stopped taking it and the pain and inflammation went away, but it took 4 months of therapy until I was back to where I had been. I do not harbor any ill-will toward my chiropractor because he has done me so much good, but I learned that supplements should be taken carefully and one should watch vigilantly for the first signs of pain and inflammation. Well, this is enough. I have wanted to tell my story for some time. I do feel that if anyone has a chronic disease, that person can not just do one thing and be all better. A combination of things and a lot of time and energy to find out just what are the best to get rid of symptoms.
Thanks for the opportunity. I hope this helps someone.