Who to tell and how to tell them?

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.

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TWO new courses of study!

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.

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How did my symptoms start?

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 …

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It it’s a job interview – who is the Boss?

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.

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