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.

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?!

Blogs

I'm finding that I'm getting more and more views on my blog. Yet no comments or emails. It would be so helpful to know what people think of what I'm going through. I love feedback.

If anyone has questions about RA or my experience, please feel free to ask. I have had RA since I was 5 and I'll be 37 this year. I've had my share of doctors, medication, and testing.

arthritisgirl@gmail.com

Living A Scared Life

I received my last gel injection on 9/30/14. But, I started feeling better on 9/20/14-just 2 days after the first injection. I am so grateful for this type of treatment. Yet, I'm laying in bed watching movies on a Saturday. I don't know how to NOT live a sick life. Not only that, I also fear that if I do too much, because I feel well, I'll start hurting again. That pain was the worst pain I have ever felt in my life. And, I thought about dating again. Dating is so hard with RA. I rarely drink, if I do, it's usually special occasions. And, going out to dinner is hard because I try to get to bed between 7-8 during the week.

I'm going to work on trying to be "normal" as I feel better. It's so hard. It's also scary. I fear the future. I don't know what this disease holds.

Air conditioning and RA, they just cannot be friends.

I am always cold. Even in the summer, I would rather be warm, then have the AC blowing on me. The cold just hurts way too much.

Why is it that hospitals are always so cold? I don't understand why they need to keep the thermostat set SO low. I work in a hospital. Luckily, if I'm flaring, I can wrap myself in my snuggy and close my office door.

Today I went to the eye doctor, it reminded me that doctors offices are always cold. I was even wearing a sweater. I almost got up and left when it started to really ache my bones. Unfortunately, when you have RA and have been on tons of meds, they want to do ALL the eye testing. So, I was there forever.

Restaurants. Totally a given, everyone knows this. But, why is it always cold? Sometimes I'm so cold and uncomfortable, I don't want to eat.

I would never survive somewhere like Alaska. It looks so beautiful there too.

48 hours post injection

Less than 48 hours since my first injection and I feel amazing. Seriously. I cannot tell you how night and day this has been. I have been so depressed about being in constant pain. To wake up this morning and feel nothing, I mean NOTHING, is pretty incredible. And I still have 2 more injections!

I strongly recommend this therapy to anyone that is close to needing a knee replacement. Or, near bone on bone. Or, just have tried every therapy for knee pain for OA. It's called viscosupplementation. The gel that they injected was called Euflexxa. I'm so excited. I'm walking without my usual limp today. I feel "normal".

Dreamcicle

I had this dream last night that I was running around, almost gliding. We were kind of like sliding down a hill of some sort. I would run up the stairs to do it again. All I kept thinking was that I was invincible. I could do anything. I was pain free. It was amazing.

Then, of course, my alarm goes off and my knee is gnawing on itself.

Today was my first Euflexxa injection. I had wanted to do a video, but I was completely wiped out yesterday and just didn't plan well. They numbed the site pretty well. The needle for the actual gel is pretty big and a little intimidating. It actually felt just like getting a cortisone injection. They said I might stiffen up or swell the first 2 days.

A Few More Days Until Euflexxa

http://youtu.be/m2qJMbzwA3w    This is a link to a video for the Euflexxa injection I'm starting on Thursday. I'm a little scared. But, from everything I've read online, most people get a good response to the injection. It's a series of 3 injections, one every week for 3 weeks.

Euflexxa is supposed to be a gel that adds "cushion" in the knee. At this point, I do not want to have any more surgeries. This year along, I've had my knee scooped and my gallbladder taken out. The whole year has been about recovery. I'm not ready for another surgery. I really hope these injections help.

It's been really hard to stand on my feet, or walk. Even just laying down. I've been in constant pain with my knee. And it's the same knee that was scooped.

The physical pain is really starting to wear on me mentally. There's only so much a person can take. And, I start to think, Is this what my life will always be? Will I always be in this much pain? It takes a toll.

Cranky Pants

I could really use a mood/attitude adjustment. My pain is constant, and it is really getting to me mentally. I'm 36, and I've had RA since I was 5. I've been dealing with pain nearly my entire life. Now that I also have OA, I just can't seem to deal with all the pain.

When I was younger, I seemed to have more inflammation and stiffness. That was painful, but bearable. The OA, it literally feels like your bones are scraping on each other. And when my knee locks, OMG. Lately, I seriously wonder how much more I can take. They say I'm too young for knee replacements. But, technically, shouldn't I be too young for RA and OA?

If there are people out there with stories to share. I am always willing to chat. I actually wish I had more people to talk to. It's hard not having friend or family that REALLY understand.

Please email me.

arthritisgirl@gmail.com

Desperato

Have you ever been in so much pain that you can't think straight?

I stopped taking my Norco because it just wasn't doing anything besides putting me to sleep. My knees ache so bad, I just want to cry. There's no other way to describe the pain. The left knee is awful. And, it's constant.

Two weeks ago, I had a cortisone shot. No relief. Yesterday, I saw the doc again, we're going to start a new "therapy". It's called viscosupplementation. It's a gel injection for the knee, basically to give more cushion inside. The medication was ordered today. I started researching, it sounds like a lot of people benefit from it. I really hope this helps. I do NOT want to have another surgery, especially this year.

It's so hot outside, and I'm bundled in blankets. The joys of RA/OA!! This is the biggest pity party I've had in awhile. I wish more than anything I had a better support system. Sometimes, just a hug or a "I understand" means so much! I defend my symptoms or hide them, and that drives me crazy.

Rest vs Sleep

Chronic fatigue has not been easy lately. And, it hasn't been easy to explain. Depending on my mood, sometimes I feel like I need a disclaimer rubberbanded around my wrist. Other times, I wish people would just stop asking what's wrong. The feeling of being so tired and not getting enough sleep is sometimes unbearable. Waking up yawning and knowing you are JUST starting your day could bring tears to your eyes. I truly know this. I swallow these tears often.

Its difficult working full time(while having to commute) and dealing with fatigue. I try to nap on the weekends to catch up on sleep. Most often, I find I'm still sleepy. Recently, I experimented with myself. I reduced my work hours to allow to take care of myself properly. When I napped, I still felt very tired. If I would just lay in bed and rest or meditate I would actually feel more rested. It seemed a little strange to me. I really thought sleep would be the answer.

Sometimes, people just will NOT understand

My left knee, I also call my surgery knee, has been bothering me for well over a month now. It's the same pain that I felt before I had arthroscopic surgery. I went to see the knee surgeon on Thursday, we're trying cortisone injections before making any crazy decisions. So, I got my injection, was reminded to stay off my feet for 2 days. I figured with only one more day in the work week, I could manage at work with my leg up and letting them know I couldn't walk around. Work was understanding. I propped my leg up, even put on my snuggy and shut my office door. One of the girls came in later, I was telling her that I was dying for some coffee. We laughed, saying how great it would be if Starbucks delivered. A little while later, I had to leave my office, I walk out and Starbucks is being passed out. Did anyone think about the girl that cannot walk to get coffee? Sometimes, just little things mean so much.


After work, I realized my house key was left in my jacket-in the house. I had to wait for someone to get home. I figured I would get my nails done while waiting. I drove down the street, and luckily they had a opening. It turned out to be a awful experience. The lady was so rough with me. Even after I told her I had arthritis. She kept telling me to relax my hand. My hands are so stiff, I can't help which way they go. I was so close to tears. Then, she kept pulling my arm so hard that my shoulder would react. I would get this look almost like, what's wrong with you. It just breaks my heart when people don't have any compassion. I get my nails done on a regular basis, but normally at a place near work. They are so professional and understanding. They even ask if they're hurting me. I guess, lesson learned with this place.

Set backs

We always try to take steps forward with our disease. RA is a progressive disease, and any set back is a complete let down.

I recently had to hold my medication for my gallbladder surgery. This was to prevent infection. Some medication prevent healing. I waiting about 2 1/2 weeks AFTER surgery to restart my methotrexate.

Yesterday was 5 weeks post surgery. I now have a infection. Albeit, just in the belly button, doesn't look like it's deep in the belly. My body is completely worn down, I'm sure because it's recovering from fighting this little infection. AND, I have to skip my methotrexate injection because I have a active infection.

Sometimes the most difficult, besides the set backs, is the lack of support or understanding. I don't think people realize that it is harder for someone with a autoimmune disease to heal.

Pain after arthroscopic surgery

On February 28th of this year, I had arthroscopic surgery on my knee. Doc said he cleaned out the synovium. I noticed right away that awful lingering pain went away after surgery. Here it is, about 5 months later, the pain is slowly coming back. It's accompanied by a strange clicking sound when I walk. Sometimes when I hear the clicking sound, I almost don't feel completely stable on that knee. I called to make a appointment with the surgeon. They said it would be at least 2 months. I opted for the physicians assistant, her wait is only one month. I've never seen her though, she doesn't know my history AND she's not the one that did the surgery.

This pic is my before and after shot from when they cleaned up my synovium. I'm crossing my fingers it still looks like the after pic!


Yesterday was 4 weeks post gallbladder surgery. I had planned to start back at the gym this weekend. I'm not sure if that's a good idea now with the current pain in my knee. I know it's not a RA flare, but I just don't want to do anything I shouldn't.

There was a comment made to me this past week that bothered me. Someone said "something has to always be hurting you". This is why I try not to complain out loud. Having had RA for nearly my entire life, people are tired of hearing about my pains. I truly cannot help the pain. With RA, comes many other things that "break down" my body. Osteoporosis, OA, fatigue, belly aches, weight fluctuation, depression. It's all a part of this awful disease. I wish there was a way to help people understand that better.

FMLA

Years ago, someone mentioned FMLA to me and told me how it "protects your job". Technically, if your doctor fills it out correctly, you can use intermittent leave whenever you want. My doctor wrote it as such that I can take up to 3 whole days a week. But, I have never done that. I have used it to call in, go home early, or for doctor appointments. I rarely use it, that is, until I'm having a flare. I may use the 3 days, but what I'll do is make all 3 days minimum days. I try my hardest not to impact my entire office. I know how hard it is when one person is out. 

I had surgery in March, we scoped my knee and did a synovectomy. After surgery, I had a hard time restarting my meds. I had to hold my plaquenil for 3 weeks for surgery, once I restarted it, it made me sick. While trying to recover from surgery, I was started to flare because my meds weren't under control. My doc only had me off work for 3 weeks after my knee surgery. I returned, limping and flaring. Of course, I turned to fmla time. I left early here and there. 

Right now, I'm scheduled to see a surgeon on Tuesday for gallbladder surgery. I have been in constant pain for at least a month. I've only missed one day of work, but that was because I was in the Emergency Room. 

What I'm struggling with is that my work is pointing the finger at me for "not doing my job". When things do not get done because I'm out due to fmla. It almost makes me scared to use it sometimes because I know I'll get called into the office to be reminded of something that was missed. Everyone knows you can't talk to HR because they're friends with the boss, and then you get made fun of. It's just ridiculous. Sadly, I work for a large organization. I'm not sure how fmla protects my job anymore. Sometimes, I feel like they're building this case of "she doesn't get her work done" to get me fired. Its scary.

Internalizing Pain

I'm sure I'm not the only one that downplays RA pain at times. Meaning, I throw a smile(even a half smile) on my face when I'm not feeling good. Having lived with RA nearly my entire life, I know people get tired of hearing me complain of hurting. And, I don't always want to be labeled as "that person". You know? Maybe it's not right, But, it's just how I feel. I may feel like screaming that day. Or just crying. Sometimes, at work, I actually will close my office door and have a good cry when I'm in really bad pain. I just don't feel the need to  bring other people down.

Right now, I'm struggling with gallstones. If you've ever had to deal with this, then YOU KNOW. I am trying my best to internalize this pain. The best that I can do at work, is basically starve myself right now, which is not good.

Common Misconceptions

"It's Summer, you should be feeling SOOOO much better now". No, unfortunately, RA isn't controlled by seasons. I wish it could be controlled by something though! When I was younger, summertime was the WORST. Living in California, we get triple digit weather, I always wanted to just dip my legs into a pool. RA'rs know what happens when you go from extreme heat to extreme cold. PAIN! Needless to say, I never learned how to swim!

The same happens when you turn on the air conditioning. Yes, it cools me down. But, after a little while, it starts to make me ache. When I drive in my car, I have on the AC and the windows down. I'm sure to "normal" people it doesn't make sense. To me, it's my balance. I wear sweaters a lot in the summer because of the AC. I'm sure people look at me strangely, but I honestly don't care. I need to be comfortable.

"Why are you so tired?"

This is a question I seem to hear a few times a week. Despite my best efforts to describe chronic fatigue and RA, people think if you "look well", you shouldn't be tired. I work full time, so I look forward to napping on the weekends. Sometimes I'll wake up from a nap, have lunch, then nap again. To me, I'm recharging. That's what my weekend is for. I know if I have too many days where fight through the fatigue, I flare. I have lost friends over this because they simply did not understand, or just did not want to take the time to understand. RA fatigue is real and cannot be controlled. I sometimes wish people could take turns and be in my shoes for 24 hours. I wonder if they would look at me differently?