My first big holiday with RA

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Made it through Thanksgiving … and I’m really thankful for that. Glad it’s over. I’m also thankful to have learned a few lessons that will surely help me in the future.

Oh my, was this the most tiring experience! I guess I shouldn’t have been surprised. Fatigue has so far been one of the most difficult aspects of RA for me.

I am still adjusting to what I can do, for how long, and how many times in one day. Most of the time I am doing better at setting appropriate limits for myself. For example, I have reduced my massage hours each week by 20%. But apparently holidays make it much harder to set those limits.

I am grateful to say that I didn’t do the primary cooking. That’s never been the way my husband and I divide labor. But I do bake the desserts, and do all the related dishwashing. Not a small task during a holiday with all this eating!

Next time I won’t offer nine people two dessert choices. One would have been plenty! And probably I would have been less stressed with the tried-and-true instead of new recipes.

And when the first chocolate cake I baked was ruined by another’s carelessness, I debated about baking a second cake. I did – and regretted it. Next time I won’t re-make anything – and hopefully won’t need to. This way I hope to be less exhausted when guests arrive!

During a busy day, I often plan a short nap to help with fatigue. But our family togetherness made it hard to stop for naps. Our grown kids live down the street, which we genuinely love. Over the holiday weekend, it meant extra evenings together eating leftovers and playing fun games. With all the people in and out, I didn’t get even a short nap on Thursday, Friday or Saturday! Thankfully I decided to give in Saturday night and head to bed almost two hours early. Next time I won’t compromise the need to rest a bit during the day.

Now I just have to remember to read this before Christmas weekend!!

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Jingle Bell Run!

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Okay, it’s official … I’ve registered for my first 5K ever … and my first Jingle Bell Run for Arthritis!

Some friends run the race every year, and have committed to walking the 5K with me. My knees just won’t let me run, but I think I can do the longer of the two events. I better have the paraffin dip ready to go afterwards though … guarantee I will be chilled to the bone!

The knees have been “hinky” for well over 10 years. It’s likely to be more OA than RA, but I’m planning to ask the Rheumy next week if we should do more evaluation. Pain levels have been much higher than “normal” in the last several months. Bah on that – I’m doing the 5K for as many years as I possibly can.

Let me know about your Jingle Bell Run experiences – I’d love to hear!

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Introductory Books

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Whenever something new happens in my life, my pattern is to find a book about it and read away. I realize that the Internet is more current, but there’s nothing like a good book for long-term reference. Once the Rheumatologist said it was 99% sure I had RA, here’s what I tracked down.

I found The First Year: Rheumatoid Arthritis An Essential Guide for the Newly Diagnosed at my local bookstore. It’s been pretty helpful, although it was published back in 2005. The author is also an RA patient, so she writes in a very reality-based way.

A colleague recommended The Autoimmune Epidemic. I haven’t gotten very far with it because I thought I should focus on learning about RA specifically first.

I am also planning to read What to Do When the Doctor Says it’s Rheumatoid Arthritis. This book is out of print so you may have to hunt a bit for it. I figure that when RA Warrior recommends it, the information is solid.

Would love any other recommendations you might have to offer!

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Vacation from work but not from pain

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Otherwise known as … why I love my memory foam bed!

I have been meaning to blog about my fabulous bed for months now. But it’s seemed like a frivolous topic, so I put it off for more significant things like medications and treatments. However, after spending several nights in a hotel recently … I have realized this bed is very important to me!

Without any idea that RA was in my future, about 4 years ago we upgraded to a lovely king size memory foam mattress from a small manufacturer. It was a bit scary to order a bed from the Internet without every testing it. However, we found a lot of positive reviews online for the middle to higher end models from this manufacturer. And because we ordered direct, the pricing was right in line with our budget.

I had been experiencing some shoulder pain as a mostly side-lying sleeper, and our hope was that the memory foam would decrease my discomfort. And oh happy days! It did! What I didn’t realize since the RA diagnosis was that this bed is one piece of my very important pain-management puzzle.

Memory foam generates some warmth when you sleep in it, so that helps me. This particular model is ventilated, so the heat feels all positive and never oppressive. More importantly, the memory foam allows me to sleep on my back without a myriad of pillows propping me into a comfortable position. And this helps me give my shoulders a much-needed break.

I also found that the discomfort in bed had another downside. I was so uncomfortable that I was forever shifting around during the night. So my sleep was much lower quality, even though we were vacationing and moving at a very relaxed pace. And you know how important sleep is to an RAer!

After a few days on vacation, my right shoulder was screaming so loud that I couldn’t even carry my itty-bitty purse without intense pain. After two nights back on my own bed, thankfully it’s quieting down. Here’s hoping it keeps getting better as I go back to my normal routine.

In case this makes you consider a mattress upgrade, here’s a video from WebMD with some good ideas!

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Who to tell and how to tell them?

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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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