A Cold Summer

Summer's have always been far worse for me than winter. The extreme's of inside and outside just kill me.

Over the weekend, I went to see my sister. Mom drove the fun 40 minutes away, mostly  through country roads. It was nice to sit back in the passenger seat and just take in the view. On the way back home, we planned to stop at the grocery store. It was mid afternoon and almost 80 degrees. I'm already thinking if we think 80 is hot, we're really in for it when we hit the triple digits. My mom is always more warm blooded than I am. I was snuggled on the couch at my sisters, I was cuddled in a blanket. The AC was on high in the car for the drive to the grocery store. I usually try to balance it by putting the window down to get some heat. I was tired from my couch cuddling and didn't think about it. By the time we got to the grocery store, my bones were frozen stiff. I could barely walk. My mom couldn't really understand how it happened so fast. Mom and the cart took off in the store while I hobbled behind. It was so hard to walk. I haven't been the same since. I'm still pretty stiff. 

I had to come home from work early today because I was so stiff and achy. Thank goodness for couches and blankets. 

I Am That Girl

I'm not a trend setter when it comes to fashion. I do enjoy dressing up. But, wearing cute shoes is something of the past because of my oh so sensitive arches. I tend to dress for comfort, and that usually makes me feel better. I know if I leave the house in jeans, I won't be comfortable. I need to be able to flex my knee around for comfort. Skinny jeans sometimes don't allow that, but they do look fantastic on. I've known that I dress for comfort, but it was recently  brought up and made me feel like I could be dressing sloppy. A few weeks ago, I went into Starbucks. It must be their job to try to remember your name AND your order. I don't go to this Starbucks on a regular basis, but they seem to know me. I was dressed in skinny jeans and boots with a baby heel. I had on earrings and a cute scarf. One of the girls made a comment about how I always come in before/after the gym. I didn't tell her the gym is not a place I frequent. Gym clothes(ie, yoga pants) are just more comfortable. I know she didn't mean anything by it, but at that moment it made me feel like I always walk around in PJ's. I love yoga pants. They are the next best thing to sweats. Especially if you're flaring. Omg, or when I have fibro pain and it hurts to touch my skin. Soft yoga pants are the best. Yoga pants get a bad rap. They're not considered "fashionable" or may even sometimes not appropriate. They're the lazy outfit for most, the one's not frequenting the gym. Maybe I should through in some earrings with my yoga pants next time and see if that makes a difference?

Pity Party, Table For One

I've been on Xeljanz for the past week. According to everything I've read online, it takes 2-8 weeks to notice any improvement. I have been in constant pain. I feel like things are getting worse, I'm getting stiffer. My costochondritis is flaring right now. And, it's just making me super depressed. My pain pills are not controlling the pain, but they make me sleepy which helps me to not feel it. But, I also don't sleep well because I wake up from pain. I'm at such a loss as to what I should do. I find myself crying almost everyday. Mostly from the pain, but also because I'm so frustrated.

My family went to my Aunt's house for dinner yesterday. I wasn't up for it. But, then I realized that meant I needed to get dinner for myself. I left the house, and went to the store. At the store, I parked in the handicap parking spot. I got the dirtiest look from someone. It just made me want to yell at them, if only I had the strength. People have no idea how hard it is to get out of the car, let alone walk around the store.

I emailed my rheumatologist and asked her if I should be seeing a pain management specialist. She suggested I see her sooner, since my current regimen isn't helping me. I called the office to schedule, my appointment is in 3 weeks. Three weeks is a eternity when you're in pain.

The costochondritis just started yesterday. I haven't had this bother me in such a long time. I'm laying down with a heat pack on my chest now. It hurts to breathe, I'm trying my best to relax and take small short breathes.

I honestly don't know how much more and how much longer I can take this. I'm so frustrated. All I've been wanting for over 30 years is to be "normal". Life is such a struggle.

Rain Brings Flares

I feel a flare coming on. The weather is slightly changing, it's supposed to rain on Wednesday. My body aches, I feel like I'm sick. My knees are not happy. Fatigue has set in. I have a low grade temp. Now, I guess I just sit back and brace myself and wait for it to pass? No. As I get older, I try my hardest to live as normal of a life as I can. "Normal". What is normal to a RA'er anyway? I guess I try not to be like a sick person. BUT, I know my limits. When it gets to a certain point, I have to stop and take care of myself. Normally, putting myself to bed. I try really hard to not miss any work. I'll have to wait until morning to see how I feel to determine that! Sometime, I'll compromise and work 6hrs instead of 8 or just shorten my day somehow to make me feel good for working and also know that I'm getting rest. My bed is now calling me, and its dinner time. Who wants dinner when fatigue yells louder?!

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?