I'm blue.....literally

First off, let me start by saying I sometimes think I must be the worst patient. I google my symptoms, and self diagnose. I often adjust my own meds. I sometimes forget that I never went to medical school. Working in the medical field, I see and learn a lot. Therefore, I often think I know it all.

I've always had cold hands and feet. I never thought much of it, just that I could have issues with circulation. The doctors have never taken note of it, and I've always had every joint examinted for my RA. For the past couple weeks, my left hand had turned blue. No pain or numbness. So, I go to google to self diagnose. The first thing that comes up is "cyanosis". Basically meaning I'm not getting enough blood. I get it. But, WHY?!  I emailed my doctor. She just says simply, "its raynauds". Google says it's common in people with RA. My doctor decides to follow up with a bunch of crazy labs. Ten viles worth. I justified eating out after getting all the blood sucked out of me. The labs show I have something called antiphospholipid syndrome. I have to make sure I take an aspirin a day because the syndrome puts me at a higher risk for blood clots. I'm still not sure if the blue hands and lab results are related. I'll see doc next week and ask a gazillion questions. I get so discouraged at times. It's like if there's a small chance something will happen....it will happen to me.

Triggers

I think if you listen to your body, you can start to learn what triggers some flares.

When I was a kid, everyone always associated my pain with cold weather. But, in truth, the really hot days were sometimes the worst. Everyone would go swimming when it was really hot. I never could, because the really cold pool would hurt. Or, even having the air conditioner on would make me hurt.  I seem to have real trouble with extremes, mostly when it's too cold. And, of course, the barometric changes. Maybe I should have been a weather girl?

 Last week, the weather started to change and it rained a day or two. I had trouble all week. I'm most often guilty of wearing my "brave face" at work. I don't like people to know when I hurt. I wear 2-3 pairs of socks, layer a couple of shirts, AND I keep on my gloves when I'm at work. I work inside a hospital, in my defense, it is a super old building with bad insulation. I was sooo cold. The only time I warmed up was when, each day, I would come home and take a steaming hot shower.

The weather has stabilized, and I had a pretty good weekend. Even went on a bike ride with the family. I haven't rode a bike in years! I know my triggers, but I also know what can sometimes help. Besides the hot showers, I have been getting body massages every couple of weeks. It really seems to help my body relax. I've noticed that when I tense up, my joints stiffen. Today, I had my nails done. I really could care less what color they paint them. I just like the massage on my feet and hands.

I often work a lot. When I do, I end up eating crap. Or, when I'm flaring up..I use food to make me feel better. Usually something that isn't healthy. I've noticed I feel so much worse when I eat fast food. It's just so hard sometimes. If I've been at work for a good 12 hours, the last thing I want to do is cook. (Besides, cooking for one is more difficult than it sounds). It makes it that much easier to order a pizza and pick it up on my way home. AND, there's actually an iphone app for that! Yes, I order pizza on my phone app! I had been seeing a therapist for a few years for my anxiety. I had talked to her about using food for comfort. She actually encouraged it. After seeing myself gain 20 pounds, well, with the help of prednisone, I decided to stop seeing her.

Even though I've had RA almost my entire life, I'm continually learning about my body and how to read it. I can't say that I look forward to learning more. But, maybe one day I'll come close to mastering it?

My secret is safe with me

Day to day life can be painful. Physically speaking. Some people have no idea what it's like to struggle getting dressed. How many people my age have gone to take a bath, then sat there and cried because you can't figure out how to get out? I'm sometimes so resentful of my disease. But, I often wonder if God didn't give this to me, would it have been one of my family members that would be going through it. I hurt a lot of he time, but the majority of the time, people have no idea. In my mind, because I've had RA for nearly 30 years, people are tired of hearing about it. I sometimes don't talk about my pain until its at an unbearable stage. Or sometimes, when it becomes obvious in how I walk. As I've gotten older, I don't get the swelling like I did when I was a child. I do get the fatigue. I could sleep 12 hours and still feel tired. My body will feel like its sick. I sometimes wonder what the future will bring. How the disease will progress. I know I shouldn't dwell on such negative things, but it's a reality of life. I'm in "moderate" pain tonight. My hands have really been acting up, I can't grab things or make a fist when they get like this. Thank goodness for iPhone typing, the touch screen is easier to use than my computer. Don't get me wrong, I do have decent days and sometimes really good days. I just wish I had some of those right now. I sometimes wonder if my family has any idea what it's like to live with chronic pain.