Pain, Pain, go away!

I'm starting to have a rough time with my pain levels. I haven't had much by way of bone pain all summer long and here we are about to enter the long, cold months of winter and I am starting to be in pain. Again. It was just about a year ago that I had the worst pain in my leg - ever. I wanted to cut it off. Just recently I had a similar pain in my hand. I've also had small pains in my hip. I just keep fluffing it off, hoping it's just in my imagination, but it's real.

I am 36 years old. I shouldn't have all these "ailments" (as my late grandmother would say). But boy am I feeling old today!  My fingertips are starting to turn a dark purple/blue color from the Raynaud's and my hand just aches. I'm doing everything I can to just not cry. I don't want to cry because the pain is unbearable (it's not), but because of the utter despair I feel. What is going on with me?

I was virtually pain-free all summer long. I felt great. Today is a totally different story. I feel like everything is falling apart. I'm finding myself desperately searching the internet for answers. I'm even thinking about doing the gluten-free thing again for awhile to see what happens. And yet, I am also thinking that there is something about environmental changes that my body just. doesn't. like.

When I was thirteen I went swimming in my very cold pool in late May. I would beg and beg and beg my father to open the pool and he ultimately would just to keep me quiet. Well, that particular year I jumped in the pool did my swimming thing, came out and had all these bumps all over me. Didn't know what they were. Whatever. I warmed up, went back in and after awhile came back out again. I will never forget what happened next. I was standing on our back deck chatting with my mom, grandmother and my friend. I was all wrapped up in a towel, still wet from the pool. When all of a sudden my limbs got weak. I rushed to sit down. I could only think. Speaking was so difficult. There was a ringing in my head like you wouldn't believe. I was trying to say "call 911" but I couldn't muster up the energy. Then I started to lose my eyesight. I guess I did say that allowed because my mother pushed my head down between my legs so I wouldn't pass out. After warming me up a bit, I was able to get dressed and warm up in bed. I remember my grandmother coming in to check on me and she commented on how grey I was. 

It turned out that I had cold-induced urticaria (hives). The doctor told my mother how lucky I was that things didn't go worse. Basically, I was lucky to be alive. I should have gone to the hospital that day, but I luckily had an angel on my shoulder that day. 

As it turns out, I have urticaria again. This time it's heat-induced.  I thought I wrote about it over the summer but I can't find any such posting. I had a rash over the summer. I got the same rash the previous summer too. No one could tell me what it was. I had a biopsy done this summer and it turned out to be urticaria, most likely from the sun. When summer ended, so did the rash. 

So, this is what is making me think my symptoms are environmentally triggered. This pain I'm having, I've had for the last 3, maybe 4 winters. Getting worse with each passing year. So, needless to say, I am back on the warpath of finding out just what is going on with me. I've set up another appointment with the rhumetologist. That appointment is in early December. Until then, I will be here reading and reading and reading; searching for answers. 

I don't mean so sound like a Debbie Downer. I really don't. I've always said "I have MGUS, it doesn't have me" and that still holds true. When you're in pain though, the game changes a bit...I just want answers. 

Post Check-Up

Have you ever noticed when you hear an old song on the radio, you are snapped back into a memory from that time period. Like when I hear Prince's Little Red Corvette, I think of my girl friends from high school and how we'd turn the radio up as loud as it would go to sing and dance like a bunch of mad people. Or when I hear Lonestar's Amazed I am right back in my husband's arms wearing my wedding gown dancing our first dance at our wedding.

Or how about when you buy a new package of Scotch tape and think about Christmas (that's what I always think of anyway). When you pop open a new box of Crayola Crayons and think about the days of elementary school.

I am sitting in the waiting room of Dana Farber Cancer Center. I just washed my hands and am overwhelmed by the smell of the soap. The soap smells of a serious illness. How do I know what a serious illness smells like? Does illness even have a smell? If it did, it would smell like the soap at Dana Farber. Which is just silly because when I was here nine months ago, I thought the soap smelled of babies; reminding me of the birth of my boys. It's all relative now though. I am no longer birthing babies but rather fighting to keep myself cancer free.

I started to write this entry while I was at my appointment yesterday. I'm usually in the waiting room a long time and really wanted to capture for you, and me, what I feel like and what I am really thinking while at the center. I was called into the offices rather quickly though so wasn't able to really finish my thoughts. It's OK. Next time.

That all being said, my visit went rather well. Still don't have the results back on the protein levels (that's an important one for my condition), but everything else was OK. I did ask Doc about my Raynaud's. It seems a lot worse than last year. My fingers and toes have been feeling the effects of the cold a lot earlier in the season. That had me a bit concerned. Doc decided to run a few more tests but the likelihood of my having whatever-it-is that he was thinking about is so slim. In other words, it's doubtful that the Raynaud's and the MGUS are related.

So, it seems I can go on about my business again until my next check up in three months. I'm not nervous about my protein levels as everything else was in check. I'm not letting the MGUS define me or control me. Although I will admit that it does for about 1-2 weeks prior to my check ups. Once I see I am fine though, I move on. This is me moving on.

Gearing up for winter

I can't believe that word just crossed through my mouth (or fingertips)! I detest winter! Seriously, I do. I don't like being cold. I hate having to go outside when it is bitter out with winds that take your breath away (literally). And forget about snow. I think snow should only be allowed during the week of Christmas just to fit the season.

The only positive thing in winter is hot cocoa. Other than that, you can have it. I would move someplace sunny and warm for most of the year but I would miss the change of seasons and I would miss the fam. So, until the fam wants to move from January through March, I am stuck here to endure the long, cold winter months.

Why am I bringing all this up before Halloween? Because I am freezing. It's not quite time to turn on the heat, so layering it is. My finger tips and toes are screaming right now! I have a glove on my left hand while my right is free to poke the keyboard on my iPhone. (times like these I wish I had an iPad). Anyway, here we are not even at the halfway point through October and my Raynaud's is acting up. So much worse than last year! Much worse. I am debating picking up some heated gloves so I don't overdose on hot tea.

And speaking of Halloween, do you dress up? We have been invited to an adult party. I want hubs to dress up as a woman. I think it would be funny because he is a big guy with a hairy chest. Not feminine at all. He's not falling for it. I am at a loss on what to be. Any thoughts?

I honestly thought things would be better with all my added exercise. Raynaud's is related to a circulation problem -amount other things. My circulation must be better with all this exercise. I guess it really doesn't matter. And my Raynaud's is related to my diagnosis. It's how my MGUS was found in the first place. I guess I just had wishful thinking. I see many heating pads in my immediate future.