Medication-DENIED

I have really been struggling with my RA the past few weeks. This disease really has a mind of it's own. It likes to "wake up" at the worst times. I continue to push myself at work, just to make it to 8 hours. I feel like I'm barely getting by some days. The fatigue has improved with some medication adjustments, but I'm still falling asleep driving home from work. There were some days last week that I wanted to use my cane, but I didn't want to bring attention to myself. The doctor told me a few weeks ago to change my diet. She wants me to cut out sugar and white bread. I live with my mom and sister. Most days, I rely on my mom to prepare meals. It's really hard to change my diet when I'm eating what other people make. My sister and cousin commented saying that I could prepare my meal the night before. I tried explaining what a typical RA day is like, and the fatigue. They didn't get it. They don't see any reason why I can't make my meals. It hurts my feelings when people don't understand how hard it can be. For so many years, I hid most of my pain. I've come to a point that I can no longer manage my pain. And, like most RA'ers, I can tolerate quite a bit of pain. The pain is really wearing on me and I hate it. I hate living like this. I made a appointment for a second opinion with another rheumatologist. I need more medication control, not just with pain meds. I need this disease controlled. I opened my mail today, the insurance company has denied my refill for xeljanz. I have no idea what I'm going to do. I'm out of medication, this is my only med that I'm on now. Doc stopped my methotrexate after I became anemic. All my hope is now in the hands of the second opinion doc that I see on Wednesday.

What Is My RA Future?

My RA sucks.  Well, I suppose everyone's does. But, lately I've been really thinking about what the future is going to hold for me and this disease. It's scary.

I've been really pushing myself at work just to stay afloat. I have FMLA and can miss up to 3 days a week. I really try not to because then I get behind. I'm still expected to complete the workload if I'm gone. And, my boss is really mean to me if I miss time. The other day, I said that I was going to FMLA and only work 6 hours that day. Nobody would talk to me the rest of the day. So, usually, I try to push myself to work 8 hours because I hate that type of treatment.

I'm home today. It's raining outside and I'm under the electric blanket. I don't know what to do next. I can't keep up this pace. I won't survive.

I Donated My Blood, But I Might Want It Back!

Last week I had the scare of my life. I have never felt death so close. All, because I wanted to help people. Let me back up.

I became a donate life ambassador to help spread the word for people to become organ donors. Saving lives is something that I not only do for a living, but that I strongly believe in. If there is something that you can do that someone will benefit from, DO IT. Unfortunately, with RA, I couldn't be a bone marrow donor, otherwise that would have happened long ago. I just started donated blood this year. I was uneducated and thought I couldn't because of all of my medications.


On Monday, I went to donate blood. We went through the normal screening. Checked my temperature, blood pressure. There is a list of questions that they ask you. Then you lay in a comfy recliner while they take your blood. I was in a hurry to leave because I went after work and it had been a long day.

At home, Mom was making dinner and said she had to run to the store for something. I went upstairs to the bathroom to dye my hair. I had about 1/2 my head in hair dye when I started to feel dizzy, then sweat like a faucet. You know somethings wrong when you don't normally sweat. I yelled down to my sister, who is a teen, responded with "WHAT?" It got worse and I laid myself on the floor. At that point, I felt like I didn't have control of my body. I couldn't yell anymore, couldn't move. I stayed there until it passed.

I went to bed after the little episode because I did not feel well. And, frankly, I was mad that nobody was there for me. About 10pm, I got up to go to the bathroom. I always go to the bathroom upstairs for some reason. When I went to walk down the stairs, it started again. I stopped and sat on the stairs. I yelled for my mom. By that time, I was drenched in sweat. She said I looked like a ghost. Then, my vision was gone. Scariest thing in my life. It was only gone for about a minute, but so much goes through your mind during that time.

We went to the Emergency room, had a IV of fluids. They did a EKG, which was normal. I told them what my bp normally is, which is 90's /60's and they recommended that I not donate. They said that my blood pressure got too low after donating. I'm totally bummed that I can't help people in that way, but I do not want to go through that again.

Where are the dating sites for RA'ers?

Dating 101: Answer the phone when a boy calls.

A few weeks ago, I mentioned that I gave my number out to a guy I met. He had texted and called. My return texts were short replies. I didn't answer when he called. Really because I was asleep. But, I didn't want to tell him I was sleeping at 7:30 on a Friday night!

I hate going down this road. I hate having to explain my illness to someone, then hear or see their response. Or worse, not hear from them again at all.

He texted yesterday after work asking if we could get together Saturday night. I'm going to try to. I'm so scared though because my body just doesn't allow me to stay up late. And, socializing usually includes drinking. Which I don't do. I guess I could just blame having to drive.

How to other RA'ers date? There should be a online dating site for people with autoimmune diseases! I would so join.

Dipping My Feet Into the Social Pool

When weekends come, I look forward to catching up on sleep. I might see my nieces, read book with them. Or, take my car to the car wash. I don't venture far from home, knowing that I usually tire easily. Overall, my arthritis has been better since the Euflexa injections. I just battled a flare last week, but the weather was adjusting here and we all know how that goes.

My friend Rachel called on Saturday and said that her work had given her tickets to a Kings preseason basketball game. She said she doesn't like basketball, but hated for the tickets to go to waste. I'm actually a fan, and something made me say yes. I picked her up early and we decided to go into town for a snack before the game. I had fries that were deep fried in duck fat. Sounds gross, but they're really good. We were sitting at a large table outside, and a group of guys asked if their party could join us. One ended up talking to me for awhile, and asked for my number. Another guy was drunk and was showing me pictures of his cute little girl. The game was good, but long. I love basketball, and live games are the best. But, the seating is not made for people with RA. Seats are hard and not a lot of leg room. I don't drink often, and Rachel is a recovering alcoholic. So, it was nice that there wasn't any pressure for either of us to drink. We did have coffee at the game, and I was worried I would have trouble sleeping. But, I didn't.

I woke up this morning, tired of course because I was out late last night from the basketball game. I'm getting sick. I always feel like I need to blame it on something. Like, I did too much. Or, that I was out too late last night. Maybe it's just a simple cold and will go away soon. I'm all sniffly, achy, with a awful headache. Oh, and earaches. I just took some tylenol cold. Yuck. I hate when I'm sick. I don't want to miss any work this week!!!

Sticks And Stones

I'm pretty open about my RA, sharing my symptoms, flares and I'm sure it often sounds like a pity party. I share on social media for several reasons. One, it's MY outlet. Second, I have friends, family and fellow RA'ers that actually do support me. And lastly, I share to educate. I want other people to know what I go through. That's it's not just a "old person's" disease.

This past week, as on here, I have talked about this most recent flare on Facebook. Here's my actual post:

 So.Much.Pain. Make it stop. Seriously. RA can kiss my big manicured pink toe.


Soon after that, a friend of mine posts about her fibromyalgia and how the pain is all mental. She says she can push through it all if she just tells herself to. Everyone was praising her and congratulating her. I commented and asked about her symptoms and meds. It just stung because she made me feel like I've given up. I can't control RA pain. Believe me, if I could, I would! And fibro isn't autoimmune, so the fight is a little different. I'm not trying to one-up her, I'm just still hurt that someone would think RA pain is so simple. Especially when she's seen me when I can't move my hands, You can't push through that.

RA Drains Me

I was waiting until this morning to decide if I would stay home from work or not. My body decided for me. I have zero energy, my head is killing me and I just feel achy all over. I've slept all day, yet I still can't get out of bed. I did manage to get up to brush my teeth and get some caffeine.

It's funny, we have a little chihuahua. She's a quiet little dog, but I feel like she always senses when I don't feel good because she'll come and lay with me. I guess animals are just smart.

Tomorrow is my busy day at work. Every Wednesday, we see patients all day long. I'm on my feet all day. I look forward to it because I love my patients. Right now, I have no idea how that's going to happen. I don't even have the energy to drive to work.