Tuesday, December 4, 2007

Are you happy?

I got to thinking about how, when you have a chronic disease, you put up with far more from your own body than you would put up with from anyone else.

I mean, think about it honestly. If you went through the list of your symptoms, with whatever chronic disease you might have, and you described them to someone who was NOT constantly ill, do you think that person would consider your condition to be acceptable?

I'm going to bet not.

I think about how I spent a year -- a year! in agony. I think about how I would sit on my bed, about to call the doctor's office, because I was in too much pain to wait until the next appointment. I think about how I would call, feeling defeated, and I would try not to cry as I described the pain I was in, how the medication wasn't working.

I think about how when it was time to go in and get my son out of his crib in the morning, that I would think that there was no way I'd be able to lift him. I think about how I would lie in bed after waking up and I would feel how stiff I was, joints throbbing, arms and legs feeling like they were just too heavy for me to get out of bed.

I think about how if I grasped something too hard, or turned a knob too quickly, I'd see stars and everything would swim in my field of vision.

I think about how I was always so tired. So, so tired. I think about how foggy my thought processes were, and how I just couldn't concentrate, or remember anything.

Brain fog was the first sign I recognized in the medical papers I started reading. It is a symptom of gluten intolerance.

But whenever people asked how I was doing, I'd just whisper that I was fine. I lied to other people, and I lied to myself.

I guess the worst part of all of it is that the doctor who was treating me genuinely was doing the best she could do.

My new doctor summed it up best. She gave me my recommendation for a new rheumatologist. I asked her about him.

"He doesn't believe in diet," she said. My face fell a bit, and she added, "None of them do."

I already knew that, I guess. It's just hard to hear.

So every time I see a new rheumatologist, I feel like I'm walking on eggshells when I tell them that dietary changes really helped me. I guess I figure they're going to yell "WROOOOOOOOOOOOONG!" like Lex Luthor in Superman Returns or something.

They never do, though. They put on a poker face, and say nothing.

But I tell them anyway. Because if even one doctor takes what I say to heart, maybe...maybe something will happen.

Someday.

The medical community is fully 20 years behind any research currently being done. Gut dysfunction is considered to be the last great frontier, and it is probably the part of the body that is the least understood by modern medicine. A thyroid specialist told me that. He told me that his son had recently developed rheumatoid arthritis. I told him he should seriously consider looking into dietary changes to help him, and I think he took it to heart.

So here I am, trying to let people know that it's not all hopeless. Someone told me that, you know. I told a few people that dietary changes helped me on a rheumatoid message board. One person laughed at me. He told me, "You just haven't accepted that this disease is going to ruin your life."

I didn't believe that.

Studies show that about 50 percent of people who are diagnosed with RA are completely disabled within 10 years of diagnosis.

I was going to be one of those people. In fact, I was going to apply for disability. But I thought, "I'll probably be denied. I'll try this diet thing in the meantime."

It was only a week before Thanksgiving and I tried it. I didn't care about the holidays, I didn't care about any of that. I wasn't going to throw a fit about not being able to have cookies and pie. I was in too much pain.

On the fourth day, I woke up with a clear head. The swelling in my hands had dramatically decreased. I smiled, for the first time in as long as I could remember. I looked at my husband and said, "HI!" I felt like I hadn't seen him, really SEEN him, in ages.

I was getting better, for the first time since I'd been diagnosed. And I had something new and precious and shiny that Christmas.

Hope.

7 comments:

Emily said...

You are so right! I am in year 10 of RA (diagnosed at 25) and diet has helped so much. Too many people think that the diet is too hard, not realizing how much better they could feel. I did elimination diets to be able to get off the enbrel and methotrexate to have my daughter and son, and now that my son has been diagnosed with Autism, we are hovering on SCD. Got to do the intro to really make it work. Ugh. Diet has already taken us so far, I know it will make even bigger changes as we heal both of our guts. Your blog is fabulous, by the way. I have stopped, started and erased mine a million times and you are doing an awesome job on yours. Amazingly, I have a Rheumatologist who thinks the diet might be part of the reason that I have no significant damage after being almost totally crippled at diagnosis. It has definitely required baby steps though.

The SCD girl said...

Hi Emily,

That is awesome to hear! I was also diagnosed at age 25 (I'm 30 right now).

My doctor told me she thinks I can get off medication some day. I was stunned to hear her say that.

The intro made a big difference for me, and I am reacting exactly how Elaine has described. I can't tolerate nut butter! I have a real sign that I'm on the right track. It's so great.

People do think dietary changes are hard. Well, when I cheated a month into the first elimination diet, I was in so much pain, I NEVER wanted to eat gluten again. I tell people that pain is a GREAT motivator.

Thanks for the kind comments on my blog. Sometimes I think I'm way too passionate about this stuff, and every time I see a comment, I brace myself in case someone is going to start yelling at me about how wrong I am.

I am so glad you have a supportive rheumatologist. You are very lucky! Thanks for stopping by.

Susan :)

mainegirl said...

Wow, I just love your blog. I said it again:).

The SCD girl said...

Aww, thanks Mainegirl.

Susan :)

Gin said...

After many years of difficulties with food "intolerances" I know that one can be their own "best" doctor by listening to one body. One has to be a good detective and feel and listen to what the body is saying. You have your head screwed on right and are making good decisions.

I wish I had the money to buy many copies of Elaine's SCD and pass them out to doctors I have seen over the years. It should be required reading for all medical students.

The SCD girl said...

Gin,

You are so right. The book is a little expensive, and to be perfectly honest, the diet itself can be costly if you are not very very careful. At the time I bought the book, I was wondering if I had enough money for food for the rest of that week. I put off an oil change to get it!

Thanks for stopping by!

Susan :)

*Do not put off oil changes.

Agent M said...

Hope. Yep, it's quite a gift. Lovely post. I'm happy to hear that you are healing.