ChiKat

Being a pin cushion was interesting. I can't say my arthritis is cured, but I wasn't really expecting that. I can't say my arthritis is better, and I was hoping to say that. But the session did have an impact on my body. The acupuncture did something.

I got to the session on time, and we spent over an hour talking about the pain I feel, and how my actions impact the pain. There were leading questions about my relationship with my family (good, so nothing to talk about there), my marriage (also good, despite the dirty dishes) and my job (the one I quit that wasn't satisfying, and the one I have now, which is fine). All in all, the consensus was that the usual stress triggers weren't an issue in my life, but I was still in a pain.

Not a ton of pain, which suggests to me that if I did have the usual triggers, my RA would be much worse.

The final decision was that I have problems with my blood flow, coupled with wind and damp.

I guess that wind and damp are common components of acupuncture. The idea is that cold or damp energy can clog the meridians in your body, or as in my case, be blown around my body, causing arthritic pain. I did a little Googling, and it sounds like the damp/wind diagnosis isn't entirely original – in fact, it's the pretty common cause of arthritic pain in most people, according to acupuncturists.

My acupuncturist put needles along the meridians in my feet, legs and arms, in an attempt to slowly correct things. She told me not to expect anything right away. Instead, she wanted to see me monthly for about two years. At the end of two years, we should have fixed the blood problem and I would have gotten as much out of acupuncture as possible.

I liked that she had a timeline in mind, although two years seems like a long time. Especially for something I don't entirely buy into.

At the same time, I woke up the following morning feeling looser. My joints felt lubricated. Instead of crackling and popping, they moved smoothly. My swollen wrist is a little less swollen.

So something happened. I'm going to stick it out for a few more months. It isn't cheap, but at $50 a visit, it's not unbearable. The visits are coming out of my clothing allowance, so I will be decidedly unfashionable this summer, but I figure I'm spending it on internal beauty, so it can't be all bad.

In a few months, I will either be telling you about all the money I wasted, or I will be raving about the joys of the needle.

I am trying acupuncture for the first time. I have a few friends who swear by it, and a few studies have suggested that it might help RA pain.

I dislike needles, so I really did not want to become a pin cushion, but my wrist has been swollen and achy for two months, so now seems like a good time to be brave and try something new.

Oddly, I'm not worried about the needs so much as I am worried that the acupuncture will work and will drive the inflammation from my wrists, but that inflammation will travel to another part of my body and settle there.

For as frustrating as the wrist pain is, it's very manageable as long as I hold my wrists steady. I can't open jars, or even door knobs if they stick. But I'm still able to lift my son because I use my back and arms instead of my wrists.

When I have inflammation in my shoulders, it is much harder to deal with. I can't drive because twisting to check the blind spot is torture. I can't change gears or disengage the parking break because that involves using the shoulder. I had no idea how often I used my shoulder until it was inflamed and the slightest movement triggered a cascade of pain.

Same with the knees or hips. They are such large joints, so even a little pain in more invasive than the pain I feel in my wrists.

But two months is too long to have an area inflamed. I run the risk of permanent joint damage and disfigurement.

I'm not ready to give up on diet changes and exercise yet, so Thursday I have my acupuncture appointment.

I ache everywhere. I can't curl my toes because they are swollen. My ankles crackle when I walk. My knees send shooting pain up my legs when I try to stand up. My fingers look like sausages. My writes have jutting bumps that are red and warm. My shoulders can hardly support my baby when I am burping him.

All in all, arthritis sucks. Time to go back on the restricted diet. It's hard enough to cut out dairy and sugar. But these days I visit family so much more. I already feel bad demanding a vegetarian diet. Putting further restrictions on what I can eat while visiting them is such a hassle. But the arthritis pain has really gotten out of control. I don't want my son to see me constantly wincing in pain. I have to fix this.

I can't tell you how thrilled I am about not having to use Enbrel again. I've mentioned before the Enbrel truly was the wonder drug for me, allowing me to walk without pain. It made me feel like I could be my age, instead of an old crone. For that, I'll always be thankful.

But at the same time, every week, the injections felt like torture. It depressed me to have to inject myself. The needle hurt. The fluid burned. I would get ugly welts at the injection site. The entire experience would send me into a weekly spiral of frustration and rage. I hated the weekly reminder that my body had betrayed me by chaining me to a lifetime of pain.

Learning that diet changes could give me back control over my body was a distant hope. I wanted to do everything possible to stay healthy, but I don't think I really believed that I could be free of medication due to diet changes. Having hope like that seemed to be asking for disappointment.

But I'm so glad I tried the diet changes anyway. Actually, I didn't just try them – I threw my entire being into the diet changes. And I dragged my husband along for the no-dairy, no-sugar ride.

These days, I'm by no means pain-free. My hands and feet still ache in the morning. But within 30 minutes, the pain has gone (for the most part) and I can get on with my life.

I don't know if I can stay like this forever. Being without sugar is HARD. Being without dairy is harder. I love food, so going vegan means there are so many things that I miss (cheese enchiladas being at the top of the list…sob…followed by cheese ravioli…I can't go on…the list is too painful to contemplate). But skipping out on all those fabulous foods means that I don't have to inject myself each week AND I avoid joint damage. The best of both worlds. So for now, I'm sticking with the freak diet.

I had a fabulous appointment with my rheumatologist yesterday in which he REFUSED to acknowledge that my diet changes had anything to do with my pain-free days. I've been off Enbrel since February when I started trying to get pregnancy. A few months before that, I went sugar-free. This is the conversation I had with my doctor:

"I really think this diet has been great for me, because I'm been pain-free for months now."
"It certainly looks like you are in remission. That is great news."
"I'm really pleased. Of course, when I stop following the diet, the pain comes back."
"Well, diet and exercise do play a role, but that's probably coincidence."
"Really? Because I have flare every time I make a poor diet decision."
"You're probably in remission with occasional flares that happen to coincide with times when you think you have eaten poorly."

It's a pretty darn amazing coincidence that EVERY TIME I indulge, I get an RA flare.

I'm amazed at how the medical community is completely frightened of diet changes rather than long-term medication.

On the super-incredible-bright side of things, if I continue to have this low level of pain, I won't have to go back on Enbrel once I actually (ever?) have a baby. I can take Prednisone once in awhile for the pain, but otherwise I will be medication free.

Not having to self-administer painful injections on a weekly basis is all the motivation I need to stay away from chocolate.

Things I Ate in New Jersey:

1. East Coast Pizza
2. Calzones
3. Hoagies

Translation of Things I Ate in New Jersey From a Restricted Diet Point of View:

1. Dairy
2. Dairy
3. Dairy

Things That Ache Today:

1. My shoulder
2. My knee
3. My wrist
4. My jaw
5. My feet
6. My hands

I feel like I earned the pain. Have I written about this before? I can't remember right now, and I am too lazy to go back through the archives. When I am doing everything right (i.e., eating well and exercising regularly but not too strenuously) and I have arthritis pain, I become depressed and frustrated. It makes me feel like I have no control over my body.

But at times like this, when I know I ate foods that irritate my body, I feel like I earned the pain. I made the choice to eat decadently and now I'm paying the price with arthritis pain. I wish I didn't have to pay any price for eating whatever I wanted, but I'd much rather have pain I earned that random pain.

This past weekend we ran into some friends of ours who are in the medical field. They love hearing about my diet, and I love yammering on about it. My husband pointed out afterwards that they obviously don’t believe a word that I say about my diet. They think the RA changes I have experienced are either (A) all in my head or (B) a fluke.

When I think about it, most people I know don’t believe in my diet. But I was surprised to realize that I simply don’t care at all. I don’t need someone else validating this diet because my pain levels validate the diet everyday.

This past weekend, we were at a family gathering. There were doughnuts. I inhaled about…well, probably a dozen.

Hey! It was a holiday! It was my patriotic duty to eat doughnuts!

Sure enough, I paid for the indulgence with joint pain. It wasn’t terrible pain. Because it’s so rare that I eat sugar, a weekend indulgence doesn’t send my body out of control. But the pain was there, and it was a definite reminder that what I’m doing is working. It might sound crazy, and it might not have the latest medical journals backing me up (gee, do you think that’s because the pharmaceutical companies can’t make a pill for diet changes?), but I don’t care about any of that.

I care about waking up pain-free.

And on occasion, I’m ok waking up with moderate pain, because the occasion doughnut binge is so worth it.

I survived the MS 150! Actually, last year I survived. This year I did fantastic. The first day was comfortable, but a little hot and humid. I averaged around 13 mph compared to last year’s 9 mph. So I was really pleased. The second day, it was cooler and magically I was averaging 15.5 mph on most of the segments.

At this time last year I couldn’t walk due to the horrible joint pain in my knees. This year, I’m a little sore, but overall I feel great! I’m so pleased. I attribute it all to my diet changes. I have an RA doctor’s appointment this Wednesday. I can’t wait to hear what my doctor has to say about things. He told me that he saw some people improve a little bit with diet changes, but only if they had mild RA. I have severe RA, so he didn’t believe diet changes would have any impact on me.

I decided to try them anyway, because what could it hurt? I’m so glad I did. I can’t tell you how demoralizing it was last year to be so crippled by the bike-a-thon. This year, I felt like superman.

Edited to add: Forgot to mention the bike-a-thon raised more than $1.75 million for MS research!

Two years ago today I was diagnosed with RA. I had been married eight months. I had been having random flares for years, but the months leading up to the diagnosis were by far the worst. We had no idea what was going on. Everyday was worse than the one before. I had trouble getting out of bed in the morning and moving around. I walked hunched over from the pain. I hobbled because my feet hurt so much. I couldn’t brush my hair, because I couldn’t lift my arm that high.

During all the pain, and all the fear, I leaned on my husband a lot. I never once doubted that he would support me. After the diagnosis and subsequent medications, when I was feeling better and more normal again, my husband confessed that he was really scared during that time. And he was angry. He wanted to know where his beautiful wife was. He went to bed with her one night and woke up with an old woman.

It was shocking to hear him say that. My initial reaction was, "you mean that when I was hunched over, hobbled and had a rats nest for a hairdo I wasn’t…pretty?". But after that knee-jerk reaction, I totally understood and valued what he was saying. When we weren’t sure if I would get better, he loved me regardless. But he mourned losing his pretty wife. He mourned all the hiking, skiing and biking we weren’t going to be able to do.

MIM started an internet firestorm some time ago about by talking about "false advertising" in marriage. She used as an example women who have long sexy hair before marriage and then immediately cut it off once they get married. I knew the type of woman she meant. There are some women who cut their hair because it is a hip new look. There are other women who cut their hair because they are done: they are married and don’t have to try anymore.

My RA was the ultimate false advertising on my body’s part. I went from being a beautiful bride to being a crippled crone. But despite his fears and his anger, my husband stood by me. He loved me and was strong for me when I needed him most.

On my two-year anniversary, I’m taking a moment to savor how far I’ve come, how much of this disease I have conquered. Even more importantly, I’m taking a moment to appreciate how much my husband has given me. I never want to take it for granted.

Eliminating sugar from my diet was successful, but I was still not 100%. Maybe I’ll never be 100%, but I was encouraged by the diet results and decided to look into food allergies more. There are two ways to identify food allergies. You can go on a fast, flush your system of everything, and then introduce one new food per week and see if you react to it. Or you can have a blood test done.

The pros to the fasting: it’s free.
The cons to fasting: it’s long, tedious, prone to error and hard. Ugh.

My attention span could never handle the one food per week cycle. I looked into the blood tests. My doctor didn’t think the tests were "real medical tests," my insurance company certainly wasn’t going to pay for them, and even my husband, who is a scientist, was a little wary of them.

But I decided to pony up the $300 and order a test myself. I’m not even going to link to the company, because I really don’t know if this is crap science or a valid test. I’d hate for someone to waste their money on a test I recommended if the test turns out to be crap.

I told my husband I could probably handle being allergic to wheat, as long as I could keep eating cheese. Ha! Why I had to open my mouth, I don’t know. I was fine with almost all foods, but I reacted practically off the chart for eggs and all dairy. Cow milk, goat milk, all cheeses, butter and any other vaguely dairy-related food you can think of.

Keep in mind that I while I do eat seafood, I hadn’t had any other meat since I was about 8 years old. It’s just not my think. As for seafood, I eat shrimp or fish maybe once a month. So I was pretty much a vegetarian already. Giving up eggs, butter and dairy would put me into the vegan category, and every vegan I knew was pale, pasty and way too thin. Plus they ate tofu, which I find disgusting.

The thing is, and it always comes back to this, I would rather be pale and pasty but able to walk, rather than a crippled little gnome. So I evicted all the dairy from our house (the support my husband has given me and all these diet changes is an entry in and of itself).

The verdict? It worked.

With the diet, the daily pain is very manageable. It’s been about six months now. I usually have one week of mild* pain and three weeks of no pain at all. It’s shocking to me. I wake up, hold my breath for a second, and then move. And there is no pain. I flex every joint, because surely it’s not possible that I have another pain free day. Those pain free days fill me with total joy. It’s overwhelming. How can I not be giddy with happiness on those days?

So here’s the dilemma. My food diet is hard. I hate not being about to eat like a normal person (or at least a normal vegetarian). I miss desserts. I miss cheese. I miss popcorn dripping in butter.

If I go back on Enbrel (after hopefully having a baby), I don’t have to worry about the food restrictions as much. I’ll still eat a hell of a lot less sugar and dairy than I did before, but when I do indulge, Enbrel will handle my flares.

But I’m hesitating before committing to Enbrel. RA is a disease of an over-active immune system. The biologics work by suppressing the immune system. There are two huge problems with this:
(1) More and more studies are coming out that say people on biologics have a higher risk of cancer. The studies aren’t sure of the RA is the cause, or the medication. Either way, it’s a huge red flag.
(2) Enbrel suppresses the immune system. I really believe that bird flu is coming. And even if it isn’t, there are a ton of scary things out there. I want my immune system at full-throttle, not suppressed. Unfortunately for me, when my immune system is at full-throttle, it is so gung-ho that it starts attacking my own joints. But suppressing it is a scary prospect. When I’m not on Enbrel, I never get sick. If my husband gets a cold that lasts two weeks, I will catch the cold from him and it will last 10 minutes. When I was on Enbrel I got shingles. What person my age gets shingles? A person with a suppressed immune system.

If I stay on my no-sugar, vegan diet, can I stay drug-free? During that week each month when I am in mild pain, what’s happening to my body? Enbrel stops joint damage. Am I avoiding weekly injections only to need joint replacement surgery down the line? That’s what I think about at night. When I am very still, I try to listen to my joints, I try to hear if anything is happening to them. I feel like there are tiny little trolls inside of me, mining away. With my diet, I took away their fuel. But some days, they seem to be hard at work despite all the diet changes I made.



* Pain tolerance is different for everyone. My pain tolerance is skewed by RA. For me, mild pain is not as bad as a broken bone. Mild pain is more like a sprain ankle. It hurts, but it’s not unbearable.