I'm melting and I can't get up

Oh LORDIE! Summer is here. We've had weather in the high 90's already. Multiple days in a row. Something I've learned about my mitochondrial disease is that heat affects me in a major way. Too cool and my muscles cramp and spasm. Too hot and I very quickly wind down and have zero energy or muscle strength. Jeeze. win-win. Strangely humidity doesn't seem to effect me as much as it did when I was healthy and able bodied. 

It's not all fun and games when I'm too hot or too cold.

I was just outside talking to someone for about 15 minutes. It's exactly 90* outside right now. I literally felt like I was going to die.

Some great tips to keep cool that I've recently learned are:

• Vicks Vaporub (menthol gel) or peppermint oil on your skin will help you cool off fast when combined with a fan.
• Keep ice or a cool towel over your heart and on the back of your neck.
• Keep an electric personal fan on you.
• Wet a scarf and wrap it around your head.
• Stay inside where it's air conditioned. Hah!

IT BURNS!

I'm going to have to learn to turn people down for outside activities during the summer unless at night or involving a swimming pool. A new area to advocate for myself. And like most things going on with my body, this temperature sensitivity seems to get worse every year.

 

Sick on top of Sick

We've had some hot sick-on-sick action going down at our house. First my husband came down with the flu. "I hurt all over" my husband bemoaned to me while I shot him incredulous looks. "Welcome to my world" is my go to retort at times like this. Of course I don't want my husband to be sick, but the two days that only HE was sick gave me some false hope that maybe I could dodge it this time? Maybe only he'd be sick? Nope.

"But tell us! What's it like being sick when you already have a chronic illness?" I'm sure that's what you're wondering? On the edge of your seat to hear? Well, let me share a little. I suddenly gain the super power to be able to sleep ALL day and ALL night! Isn't that amazing? I do nothing, but am also hungry all the time. But I'm not just hungry, I'm starving AND nothing sounds good to eat. Are we having fun yet? "Tell us more!" You may be demanding. Very well. My skin is so sensitive and every cell in pain that anything I put on hurts. It doesn't matter if it's the softest pajama or fuzzy blanket, it hurts. I want a nice warm shower, but also don't want the water pressure on my skin. In short, I transform from a mature adult woman to a cranky, fussy infant who can not be soothed. What fun!

My body already hurts all the time. Every second of every day I have pain. It's just how severe that pain is and to what degree it distracts/consumes me that changes. When I'm sick, it consumes me. I hate it. In short (to quote my favorite meme because it's so true) "Everything hurts and I'm dying!"

Something New

Even though it's only been a few days since I got the RA diagnosis I've learned something new. RA doesn't like to travel alone.

A few months ago I began noticing that my right hand especially had become EXTREMELY sensitive to cold. By that I mean if I touched something cold it felt like my hand was on fire and all the skin was melting off. This happened a little in my left hand too, but my right hand was much, much worse. Yes, I told the rheumatologist about it. No, she didn't comment on it.

Then about a week ago the middle 3 toes on my right foot felt freezing cold. But when I touched them they felt normal. Very odd and that's never happened before. Fast forward to yesterday and I woke up to this:

The middle toe on my right foot was really swollen and blue/purple.

And no, I didn't "do" anything that would have caused this.

I took this picture so you can see the difference and messaged my rheumatologist. She had an odd vacation response in the message center saying she was "out till 2020" so I sent it to my PCP too. I'm guessing she just stinks at technology, but I still haven't heard back from her.

My PCP, who is GREAT at getting back to me, got back to me by the end of the day. Here's what he had to say. "I am unsure of the cause of your symptoms but this could be Raynaud's which could be related to Rheumatoid disease. Did you hear back from (rheumatologist name.) So I looked up Raynaud's Syndrome and sure enough, the symptoms seemed to fit. 

I read that one way to test it is to hold something cold for a few seconds only. If your skin turns white, you likely have it. It also goes along with autoimmune diseases like RA, Lupus and some others. 

Curious scientist that I am I got up this morning and took a cold cup from the freezer and held it for a few seconds. Not much change on my left hand. I tried it again with my right. The difference was immediate. The parts of my hand that came in contact with the cup turned white. This was after holding it for about 3 seconds (I'm not a glutton and it was painful.) 

Same lighting, same location after 3 seconds of holding something cold.

They haven't turned blue, but still feel cold about an hour after doing that. So it looks like it could be Raynaud's.

Unlike RA it doesn't look like Raynaud's is very serious. You need to avoid touching cold things with your hands, wear socks, stay warm. If I you get a lesion or sore on your hands or feet you need to have it seen to. That's about it! 

I also found this NY Times Q&A on Raynaud's to be particularly helpful.

Yes it is!

My husband and I made some jokes about how I went 1 day without a diagnosis and "be careful what you wish for." I reminded him that it wasn't really a diagnosis, but more of a "Huh! It could be this..." which isn't the same thing. But truth be told I was a little shocked. 

I've had many symptoms for so long that I know them inside and out. I know what helps and what makes them worse. I can tell you about them in detail. But this was all so new and sudden that it really took me by surprise. It also left me with some new questions. Biggest of them is why is everything happening to my right side?!?!?!

From what I've seen and read asymmetry isn't all that common. Most people with RA have symmetrical symptoms. Is that fact that mine are more like 80%/20% unique? Or does it mean I have something else going on? Time will tell I guess.