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or … Why Patient Awareness is Vital to Improving Autoimmune Arthritis Diagnosis

I thought I was a pretty aware patient. I’m a massage therapist, holistic health coach, and a yogi. I know bodies, and thought I especially knew my own pretty well. But looking back, I missed some signals.

It’s been 14 1/2 months since I was officially diagnosed with Rheumatoid Arthritis. I’ve been thinking about that diagnosis process lately, because until about a month ago I thought I was one of the lucky ones. My diagnosis process wasn’t long. It wasn’t fraught with speculation about various diseases. None of my doctors ignored my requests or told me that my concerns were in my head. So I thought that I had been lucky enough to have been diagnosed in an early onset stage.

Now that all may in fact be true … but lately I’ve realized that my RA symptoms started long before I even noticed them. Why did I realize this? Because it was this fall (about a year after official diagnosis) that I really started to feel like “myself” again. I realize looking back that three changes happened in my body that I discounted.

1. My entire body temperature felt like it raised about 5 degrees. Instead of always being freezing, I began to be warm or even hot most of the time. I attributed it to many things, but never thought about it being a possible symptom of systemic inflammation.

2. My ring sizes increased half a size at a time when I had lost about 10 pounds. Again, this would have been a warning sign but I attributed it to things other than inflammation. There was also no obvious joint swelling at this time.

3. I began to struggle with constant low-level fatigue, sometimes increasing to temporary exhaustion. I guess my sense of logic kept me focused on the many possible reasons (I had a long list) why I might be over-tired. I never ever considered that I had a disease. The fatigue crept up on my slowly, and was building during a time when I was indeed burning the candle at every possible end. So if you were working full time, going to school part-time, starting a new business, leaving your full time job and dealing with the illness and death of a loved one … wouldn’t you just figure you were tired because of all that? I did.

All three of this things have resolved for me in the last two months. I believe this is due to medications, as well as lifestyle and nutrition changes. When do I last remember not having these symptoms? 2002. OMG – that’s almost ten years ago!

Does this mean I’ve had RA to some degree for this entire time? And what if I had gone to my physician with any or all of these symptoms and asked for help? Sad to say, but I’m pretty sure she would have patted me on my head and written me an anti-depressant prescription. My family even asked me to get some anti-anxiety or anti-depressant meds but I resisted. (Been there, done that. It was helpful believe me!) Somewhere deep inside I knew I wasn’t depressed … it was physical. But even so, I waited until my joints were visibly swollen to ask for help with medical diagnosis.

So here’s my new crusade … when people tell me they are tired all the time, I remind them that it’s not normal to be exhausted. Especially if it goes on for a long time and they are generally taking care of themselves. When people express their frustration at pain, I remind them that it’s not normal to be in chronic pain.

We can all do a lot of things to take care of ourselves – exercise, eat nutritiously, sleep well, hydrate, etc. But when all those things aren’t enough it’s up to us to ask for help! There’s no way to start working towards a diagnosis without first realizing we need to ask for help.

**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “How Can Diagnosis Be Improved?”**

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As a holistic health coach, I am blessed to be part of a large and vibrant community of progressive-thinking folks. I have learned a tremendous amount about nutrition and ultimately about wellness from my training and experience. In fact, it’s this kind of naturally-based healing/health that I have focused on my whole life.

Many years ago I was a leader for Weight Watchers … my first experience with “diet” and nutrition programs. I’ve done yoga for years, and spent a lot of time at gyms working out before that. I’ve had acupuncture. I’ve trained in Reiki and receive it regularly. I’ve received other types of energy healing regularly for years. I’m a massage therapist who depends mightily on a weekly massage (and have for 6+ years). I love having green smoothies and shopping at my local farmers’ markets. I believe in the power of prayer. And for the most part, I’ve always tried a lot of natural healing methods before turning to medical care.

And despite all this stuff … the RA symptoms started. Reiki and massage didn’t help (although they certainly didn’t make anything worse). I tried to keep eating healthy, but my ability to exercise became severely limited. I had to cut my work schedule back by 20% to keep the incredible pain in my hands at bay. Symptoms didn’t get better when I wasn’t working either. Weight gain ensued … and it was all depressing. I hung in there with the natural healing methods as best I could, but I knew it wasn’t going to be enough. I’d reached a fork in the road.

Choose left or right?

It was time to pursue medical diagnosis and treatment. You’ve read about that process here on the blog, so I won’t repeat it. But let me summarize the results: I feel a thousand percent better! Practically my old self. I continue to pursue all my natural health and wellness methods, which support the medical process that keeps me going.

What I discovered is that it isn’t a fork in the road, but a new path. I don’t have to give up the things that have always helped me. I don’t have to feel guilty about getting the medical treatment I need to be well. In fact, my rheumatologist has been pretty darn impressed with my incredibly low inflammation levels. The other RA indicators are still positive, but my liver is processing the meds in the healthy way and my overall symptoms feel mostly under control.

So for those who might judge because I’ve chosen to integrate these (sometimes opposing) paths … take a walk in my shoes before you tell me I’ve done myself wrong. And remember, I wear mostly “sensible” shoes now … not the beautiful higher heels of my youth. So it may not be as easy or much fun to be in my shoes … but I’m happy here. Isn’t that what life is all about?

**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “Resistance to Rheumatology Treatment”**

Just when I thought I was going to sleep … a rant took over my brain … because this afternoon for the third time this week someone told me that I probably have celiac disease & that it’s probably the source of my RA. And that going gluten-free will make me well. Oooooh-kaaaaay …

I have been told about this connection (usually preceded by “I don’t know if you’ve ever heard this before, but ….”) more times than I can count. And nearly as many times as someone has suggested that dark cherry juice will also be the “solution I need.” At this point I have already had 2 blood tests with negative results. I have absolutely no celiac or early celiac symptoms. And truthfully, my c-reactive protein and ESR numbers are quite low!

Even so, I am now seriously considering spending $300+ on DNA testing and attaching results for that plus the two blood tests to my chest with a safety pin. Just to get people to shut the heck up about “solving” my “problem” when they aren’t qualified or knowledgable.

I just don’t buy celiac disease as a cause for RA. But I do know one person with RA whose inflammation has improved from being gluten-free.

Maybe I will spend 2-3 weeks gluten-free because it certainly can’t hurt. I have been 80-90% gluten-free for a month before – but this was before my symptoms became active. I lost weight and felt terrific, but who knows whether that means it would influence my symptoms.

Or maybe I will just keep doing what I’m doing. It’s working so far and I’m happy. Now all I have to do is fall back to sleep …

It’s been too long since I blogged! I made it through the holidays … what I learned at Thanksgiving helped a lot. And just returned from a trip to Florida to see my Mom. Boy have I noticed the way cold weather changes the way I feel … especially when I got to have a day or two of warm weather in January!

Now I am working my way through the rheumy prescribing methotrexate. More on that soon … my MTX journey starts this Sunday!

Rheumatologist number two is the winner. He is fantastic! And I am so grateful to have a caring and knowledgable doctor in my corner. Here’s why I think he’s so great:

1. The appointment started in his office, then moved to the exam room later. (Previous Rheumy kept me in hospital gown and on exam table where my feet didn’t touch the ground for entire appointment!)
2. He spent a solid hour with me.
3. He answered every question without condescending and with just enough detail.
4. He was so careful about the physical exam – both by being thorough and by making sure he didn’t hurt me.
5. He seemed to enjoy showing me the details from my hand & foot xrays.
6. I asked for two more tests – one blood test (for celiac) and one x-rays of my knees. He agreed 100% with both ideas.
7. He seemed to expect me to participate in decisions regarding meds and treatment plans. Normally I have to push for that. Happy to be on the same wavelength!
8. I like that he seems to be a bit of a rebel.
9. I love that he understood how important my career is to me, and encouraged me to continue.

However, I am concerned about what seem to be a couple of downsides.

1. DMARDs (Plaquenil) have begun, since we now have definitive diagnosis based on x-rays and additional blood tests. He downplayed the possibility of any eye-related toxicity. But instead, I wish he would have sent me to an opthamologist for baseline field of vision tests. This means I will have to stay on top of side effects and options with a lot of detail, although I suspect I would have done that anyway. I’m planning to call his office and ask for an order since I already made the opthamologist appointment.

2. He’s older than me, which means at some point he will stop practicing. But I’ll just cross that bridge when I come to it …

Bottom line … I’m happy. So far, so good!

I officially organized all my RA-related medical stuff into a binder today. Tabs for Tests, Imaging, MD Notes, Medications and Primary Care Info. Did I forget anything important? Not too many papers right now, but it’s better than a crazy messy folder full of confusing stuff. I know I’ll be glad I did this.

And tomorrow is the appointment with the second Rheumatologist. Read through the recent X-Ray report and Googled some terms so I’m prepared. Gathering my questions together. Turns out maybe hubby can go with me … but we’re not sure. Really hoping I like this guy …

Plus we found out that the nearby teaching hospital will be on our new insurance as of Jan. 2010. So I will have the option of that Rheumatology practice again … kinda wish I hadn’t cancelled the late-December appointment I had with them. Oh well …

Of course the first person I told about my symptoms was my husband. He really thought they were work-related, as I tend to push myself pretty hard. I was seeing a lot of massage clients every week, and we hoped maybe that was the reason why these various joints in my hands, wrists, and fingers get swollen. But after a long holiday weekend off I noticed no improvement. And in fact, I would sometimes see improvement on days when I gave many hours of massage.

I talked to some massage therapist friends during this wondering phase, but really didn’t mention it to anyone else.

Then the RF test came back at 26 (normal is up to 13). And the PCP asked me to see a rheumatologist. Then the rheumatologist said it really looked likely to be RA. And ordered Xrays and more blood tests. Still waiting for all the final details, but this is 99% likely to be RA.

Why did I struggle about telling the kids and their significant others? Well, they all have their own challenges and struggles too. And we are the support mechanism for a lot of that. Or maybe I just didn’t want to make the RA seem more real.

But when I realized that several good friends knew, and that at least one of those friends saw one of our kids nearly every day … I had to tell them. And so I put an email together. It’s hard to find the right tone for an email like this. I’m not dying. I’m truly not in excruciating pain, although the fatigue can be overwhelming some days. I want my life to be as normal as possible. And I really don’t feel comfortable with pity or a lot of sympathy.

But I’m a pretty good writer so I worked something out. So thankful for this 60-second Guide from @RA_Guy! It really helped quantify what RA means.

By now I’ve heard back from all but one of the kids. Some in person, some by email (from out of the state & country), some by phone. And they love me. They care that I am okay. They want to know how to help. (And I need to find the answer to that question!) I feel better!

On the other hand, I am not ready to tell clients or my mother. But that’s another post.

Thinking about my massage career, and whether or how I will be able to continue it as time passes. I decided to embark on a one-year distance-learning course from the Institute for Integrative Nutrition that will certify me as a Holistic Health Counselor. I’d like to focus on nutrition and wellness especially as it relates to people in chronic pain.

However, what the heck was I thinking? Because now I have two courses of study – one for the HHC certification and one in Rheumatoid Arthritis. I have books all over the place. I need to sit at the computer for way more hours than I really have. And I feel pretty overwhelmed sometimes.

How did my symptoms start? I had swelling and stiffness in three metacarpophalangeal joints on both hands. I noticed the symptoms immediately because my hands are my tools. I have been a Nationally Certified massage therapist for the last seven years. I use my hands to work for anywhere from three to six hours during my five work days each week. I cannot give the massage my clients require without these tools. Some days it just freaks me out to even imagine what will ultimately happen to these hands.

At first I thought maybe I was just working too hard. But the symptoms persisted even after I took a long holiday weekend off. Some days the swelling would minimize and others it would be more difficult. So far it hasn’t been unbearable.

As I learned more about RA, I realized that I have had minor symptoms in my feet for probably about 2 years. At first I thought I was doing too much yoga. And then I thought maybe I wasn’t doing enough. Either way, I know that walking down the stairs in the middle of the night requires a kind of jumping while holding the railings so that the pressure on those two bilateral joints is minimized. Thankfully I haven’t had to do that lately …

I met with the first rheumatologist three days before my 45th birthday. I had a positive RF test a few months earlier, and symptoms in my hands & feet for a few months before that. The rheumy, who seems like an old-school guy, says it’s most likely RA.

And then he ordered blood tests and x-rays. But it will be another two months before I can see him again.

I think it’s like a job interview … dear sir, would you be the right fit as a long-term medical partner for me?

So, I was originally planning to talk to 3 physicians/practices. Two are local – one large, one small. I had also hoped to talk with a physician/practice associated with a nearby teaching hospital.

However, our not-so-fabulous healthcare system has gotten in the way. My husband’s insurance (on which I rely) is changing to another provider in January. So I cannot use that nearby teaching hospital. Thankfully, I could try to get into the rheumys at another teaching hospital that’s further away but would still be manageable.

For now, I am proceeding only with local docs and hoping that’s okay.