NEW DOCTOR

I had an appt. with a new rheumy. It took me quite a while to get to the point I could see him. He is in the same practice as the one I fired, so I apparently I needed to be a "special case" to switch doctors. Well things went pretty well. I have had just a couple of small flares since my last visit. All of them where caused by not following the "starch-free" diet. I cheated during a couple of week-ends and ended up paying for it. It's one thing to be in pain, but it just makes it worse if you know you caused it. Back on track now.

I FIRED MY RHEUMY

This last week was supposed to be my 6 month check-up with my rheumatologist at the University. I cancelled my appointment and fired my rheumy. The last 3 appointments I had with her, she took the entire time trying to convince me to go on the biologic medicines I am trying so hard to avoid. My aunt took those meds, she still fused. Her back is one complete bone. A lot of good they did her, except to give her a bacterial infection she has never been able to get rid of. I think I will pass on those drugs until I have no other choice. If you are taking those kinds of drugs and they are working for you, I think that's wonderful. I'm just not willing to chance the side effects that come with it when I have other options that are working for me at the moment.

LATEST DOCTOR VISIT

I went to the doctor yesterday and got a little bad news. My AS is getting worse. It has moved into my left hip giving me a lot of extra bone in there. For anyone else this wouldn't be so bad. When they did my MRI's six months ago, they found a defect in my left hip that I've had since birth. I never had problems with it while growing up. I was a baton twirler in high school (wow, that really shows how old I am), I did the splits, back flips, cart wheels, and anything else that position required without any pain at all. Now this "defect" is causing the extra bone in there to hit my pelvic bone. (ouch!!) The inflammation makes it even worse. I have really been slacking on the Starch-free diet lately. Time to get back on board!

ANKYLOSING SPONDYLITIS, STARCH-FREE

Becoming starch-free has been one of the most difficult things I have ever had to do. For those of you who have no idea what I am talking about, that means no corn, wheat, peas, beans, rice, potatoes, or any thing that ends in starch (corn starch, etc). This takes out a good portion of food. I have found over the last few months, that even though it is hard, it is something I can do. I have messed up a couple of times, don't we all, but so far I've done pretty good. Many have told me they could never do this, it would be impossible for them. As with anything, it depends on your reason for doing it. When I am starch-free I can move like I have no handicap. This means cycling, rollerskating, hiking, and most of all playing with my kids using no fore-arm canes. My kids are teenagers now and I want to spend as much time as I can with them making great memories. Very soon, they will have families of their own and I want all of us to look back and remember these wonderful times. I have no idea what is in my future when it comes to this disease. But no one will ever be able to say I didn't try EVERYTHING possible to at least slow it down.

So here are my reasons. First, for myself,  because I am worth it. Second, for my husband. Third, is for my kids.

REMISSION- FINALLY!! I THINK

Since September of last year I have been trying to get my AS to go into remission. This can be a little tricky. Having dealt with this disease for over 25 years, you would think I knew everything there is to know about it. This is where the problem lies. I have been undiagnosed for 24 of those years. I would have pain for approx. three months then it would go away mysteriously and I could lead a normal life. Then "WHAM", it would be back again. I know there are "triggers" that can cause AS to flare for months and ones that can cause it to go into remission. In every person these triggers are different. As I have mentioned before, starch is a big trigger for me. Other than starch, the others have yet to identify themselves. For the last couple of weeks, I have had very little pain. Could this mean remission? Maybe. Maybe not.

NEW DIAGNOSIS- ANKYLOSING SPONDYLITIS

It's been quite a while since I posted anything.  Starting in September of last year, I stared having pain again in my lower back. This has happened off and on for the last 20 years throughout my entire back. It was always diagnosed as bulging or herniated discs. I have also had problems with plantar fasciitis, achilles tendonitis, uveitis (eye inflammation), hip pain, and pain in my bum (nice huh!). While I was having the excruciating pain in my back, my left eye started acting up again. Then the hips started hurting. Finally, I had had enough!! I walked into my doctors office and told him we had to figure out why, at the age of 45, my body was literally falling apart. After x-rays,  MRI's, and many blood tests (there was a gene they were testing for), I was diagnosed with Ankylosing Spondylitis (AS) and Osteo-arthritis. I will not bore you with all the medical details of  AS. The easiest way to explain it is my body is trying to fuse together into one big bone. My doctor said I would not die from this disease, but I will die with this disease (non-curable). Very reassuring. My sacroiliac joints have already started to fuse (that's why I have that pain in my rump roast, hehe). My lower back is trying to fuse but I am too active so it hasn't happened yet. I also have the hips of a 80 year old because of the Osteo-arthritis.

Since being diagnosed, I have spent many hours researching different treatment options for my AS. A doctor in England, A. Ebringer, discovered that 90% of people diagnosed with AS have a gene (HLA-B27). Not everyone with this gene will get the disease (my daughter has the gene but not the disease). They have not figured out what the trigger is that causes it to start but they do know that it involves a bacteria in the gut called Klebsiella. This bacteria feeds off of starch. This is why you will now see recipes labeled starch-free along with the gluten-free.

You can find out more about AS and a starch-free diet at www.kickas.org.