Who Ever Said Pain Was Temporary....Did Not Have RA.

I've been resting as much as I possibly can. I'm taking anti depressants. I meditate almost daily. And, I have been seeing a therapist.Yet none of these things are helping me to deal with my daily pain. I don't understand how my RA can be present every single day. My energy level goes from ok to nearly falling asleep in just a couple hours. I'm trying so hard to be patient with this new drug. It's not like I have the energy to fight it or do anything else. It really is frustrating. I briefly looked into filing for permanent disability. One, the payments are less than half of what I make now. Secondly, I cannot live without insurance benefits. I just need to get better. I feel like I didn't do that much today, yet I am so exhausted. My body hurts and my feet just burn when I stand. Sometimes, I just want to cry out of pure frustration. I'm so tired of being tired. And hurting. How can someone hurt literally every day?

But I Don't Look Sick...

The worst is when you're fighting a flare and you feel alone. Feeling like you have to justify the pain because you don't "look sick".  My family sometimes makes comments that make me think I'm faking it. Lately, I have tried to explain that I am faking it. For years, I have faked feeling well. People with a chronic illness want to feel "normal", and often downplay pain. I know that I have done that up to the past year, when I realized that I could no longer mask the pain.

Today, my sister put all this stuff on facebook about me being a freeloader. Yes, I live with my family. But, I do everything I can to help out. Mostly, monetarily. It just angers me because she has no clue what I'm going through. My doctor took me off work for 6 weeks while I receive my Remicade infusions. I still have daily pain. I can't walk much without having to rest or even take a nap. I feel like I'm at the end of my road. Other people were responding to the post she made, not one person having any compassion for what I'm going through.

I have my little sister, that's 15, helping me since she's out for summer break. Together, we cleaned the house and made dinner. The laundry is nearly done. But, my other sister doesn't see that.

People don't need to feel sorry for me, but don't make me feel like I need to defend myself. Or, that I need to show you my pain. It is real. I wish I didn't have RA. Do you know how much I wish I could run? I'm jealous of people that can run.

Remi Update

It's been 4 days since my Remicade infusion. The day after was so bad. I was so weak and tired, but I did read that many people experienced this. I'm still having pain and stiffness, mostly in my knee. I was pretty tired yesterday. I don't expect this to be a miracle drug, I'm trying to have patience.

I'm hoping to start doing pilates or even light stretching soon. My back hurts from laying in bed so much. I feel like I get tired so fast though. I haven't left the house much because I haven't really felt up to doing anything.

My Everything Hurts

I am totally and completely at the end of my rope. I was on my feet all day yesterday for work. Each week, I know that I'll feel bad on Thursday. But, add that to my already ongoing pain. I'm done for.  My everything hurts. My knees are the worst. The ache that I feel can't be compared to anything else. I seriously don't think I can take much more. It's affecting me so much mentally.

Today, we had a meeting scheduled from 12-5 at work. I only lasted at work until 11. The director made me feel really bad for leaving. She said everyone was trying to get out of the meeting. I tried to explain that wasn't the case. People can clearly see me limping around. I had to defend myself and explain how and why I felt so bad. Near tears, I stood there and told her how I was struggling physically. I felt like I was begging her to go home. Nobody should have to do that.

Tomorrow I already have a appointment scheduled to see my primary doctor to talk about my depression. He seems to ignore it every time I bring it up. This disease and pain are bringing me so down. I plan to talk to the doctor about taking me off work for a medical leave for a few weeks. At least until I get stable on Remicade-that I start next week.

I've taken 3 Norco's in the past 8 hours. That's a lot for me. It hasn't changed the pain much. I don't know what else to do to help myself beside laying in bed cuddled in blankets.

Cake

I had heard mixed reviews for the movie, Cake. The movie is about a gal with chronic pain. Of course, living this life myself I knew I had to see it. I love Jennifer Aniston. And, I have to give her a lot of credit for this movie. It's not something I would have pictured her in. She did really well. But, I was a little disappointed in how they portrayed a person with chronic pain. It made me feel like they focused so much on her pill popping. It made her look like a drug seeker when she went to the doctor. Even when she went to someone's house, searching through their medicine cabinet. MOST people with chronic pain are not like this. I know that I am not. I am acutely aware of how many pain pills I take, how often I take them and don't abuse them in any way.

Constant Pain Makes Me Feel Weak

What do you do when your pain level feels like it's at it's worst and you just cannot push yourself anymore? No, really, it's a question. I've been having more and more days when I feel like I just can't take anymore pain. For so many years I have been able to put on a fake face and push through the pain. I can't hide it anymore. For that matter, I am getting to the point where I just can't take it anymore.

My pain is intolerable. I have so much pressure at work to be there. I get so scared what life could be like a year from now. If things keep progressing like they are, what will I do?

Most days, I could literally just stay in bed all day. I can't remember the last time I had a pain free day. The last time I saw my therapist, she asked me how my pain was. I told her it was about a level 8. She just looked at me funny. She suggested trying "mindfulness" . She said instead of letting my head go to a bad place, just think about that moment. Right now, I'm trying so hard to do that. The pain talks on its own. I can't focus on anything else right now but the gnawing pain in my legs, especially my knees.

Today is Friday, and it's a 3 day weekend. Most people look forward to times like this to leave town or do something fun. I look forward to sleeping or just resting.

11 more days until I start Remicade. I had been so scared to start it, not knowing how it would make me feel. Now, I just can't wait. I need for this to work.

Thing NOT To Say To Someone With RA

There are a lot of things that people say that often hurt my feelings. Especially lately, with my RA symptoms being like a roller coaster. The unpredictable symptoms sometimes makes me feel like people actually question my actual pain.

"Oh you're just in pain, it'll go away"

I wish I could hand off the RA stick to people, just so they could feel what a flare feels like. Sometimes, trying to explain it doesn't do any justice at all.

"I can't do anything for you"

Yes, people can actually help. With a full on flare, I need help with the daily things. Making my bed, maybe even unhooking my bra. These may seem like little things, but the energy it takes when your hands hurt is just crazy.

"You were fine earlier"

Sure, that may be true. But, I honestly cannot control the symptoms. They come on when they feel like it. These statements only make me feel like people think I am lying.

"Why are you walking like that?"

Believe me, I do not think limps are cool. If I'm limping, it's because I am in pain. I'll probably try to downplay it,  but mostly so I don't hear one of the other above responses.

"You're not better yet?"

It may be surprising to some people, but RA is not like the flu. It's not going to go away. Unless you know of a cure that I don't. And believe me, I WANT to be better.

"Why are you hurting, what did you do?"

What did I do? I didn't GIVE myself RA. I did not injure myself. Granted, there are times that a flare could be brought on by doing too much. I still don't think the blame should be pointed at me for wanting to try to be "normal".

"You're tired, oh I am too"

Ha! Do "normal" people have any idea what autoimmune fatigue is like? Really though? Some days I could sleep close to 12 hours and feel like I'm crashing at work the next day.

"My body hurts, I feel like you"

You feel like me? Step in my shoes for a day to understand the struggles I go through. Have you ever struggled trying to open the toothpaste? Does it hurt you to drive because gripping the steering wheel kills your stiff hands? Yes, you may have pain, but you are not like me....unless you have RA.

I think the main reason so many of these comments bother me is that I've always been open about my RA. I've had RA since I was 5 years old, nearly my entire life. The disease is not new, neither are the symptoms. THAT is why people should not act surprised if I'm flaring. I never want pity, NEVER. Just understanding. I talk about my RA often because I want people to understand it. I sometimes try to tell "normal" people that it feels like after a intense work out, with having the flu. But, only it lasts just about every day. I'd much rather welcome questions than feeling people question my symptoms like they're not real.

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?

Down In The Dumps

I've been really frustrated lately. For a few reasons. I started PT a few weeks ago for my knee pain. They showed me how weak my body is. It was really disappointing. They had me try to walk without a limp, kind of hard when you have knee pain when you walk. Then, they had me stand on my toes. I didn't realize how awful my balance is. God help me if I ever have to walk in a straight line to prove sobriety! They gave me exercises to do at home. Of course I haven't been able to do them because of time restraints and my awesome fatigue.

My home life is going to drive me into a wall. I always tell people that my family helps me. When, in truth, I feel like I'm the one that helps them. I come home to a crazy mess every day after work. I overdraw my spoons just to clean it up before I pass out for the night. Then, its destroyed again in the morning. I don't always have time to do it in the morning. It's draining. I feel like I'm literally stuck here. I've helped mom with bills for years. Now that I have a car payment, I can't afford to move on my own. It's just not fair. I could support myself if I didn't have her bills.

I ran out of medication weeks ago. I haven't told anyone. I haven't been able to afford my refills because I had to buy groceries for the house two paydays in a row. It makes me want to cry because I know what will happen. I don't want to start flaring. I'm putting myself in a bad position, but I don't know what else to do.

I always hear about people going missing, then they're found safe. They just needed to get away. NOW, I know why people do that. They need a break from life, just for a minute. I really wish I could run away and turn off my phone and it just be me. Just for a day or so. If only.

Living The Dream

I'm living the dream right now. Well, my dream anyway. I'm cuddled on the couch with my blankets and catching up on dvr. The family is all out of town, so the house is nice and quiet. Nobody is here to make fun of me for wrapping up in a blanket when it's nice outside. I don't have ANY plans for the weekend, so I get to sleep in! I'm just in a happy little bubble right now.

I was achy all day at work, completely pushed myself to make it through the day. My FMLA is still on hold at work. I tried all week to get ahold of my HR lady. She made me re-do my paperwork three times. Ridiculous.

Pain Ranting

These headaches lately are so draining. Everytime I get a migraine, it takes at least 2-3 days for it to slowly go away.

On top of my nearly constant headaches, it rained this week and we had some temperature changes. That makes me achy. My entire body is achy. You would think I would be a pro at this RA thing. I've had RA nearly my entire life, yet I never know what to do. I stopped contacting my rheumy when I'm in pain. I don't want to keep adding more pills.

It's just frustrating. Everyone wants to be their best, to feel well. I really want to start a pilates class. How do I do that when I'm falling asleep driving home from work. And, my hands hurt so bad to hold the steering wheel.

I wish there was a local support group for people with RA. The online groups are starting to get really depressing.

Third Opinion On My Knee

This past week, I saw another orthopedic doc. I was really starting to get frustrated that my doc that did my surgery last year just wants to keep injecting me with cortisone, even after I say it doesn't really help. I wanted another opinion. If this is how I'm going to live the rest of my life, in pain and not able to stand or walk for long without pain...then I needed someone else to confirm that.

This new doc was really straight forward. Which I love and really appreciate. He actually had a different diagnosis altogether. He says the pain that I'm feeling now is actually called "jumpers knee". It has to do with my patella having some tendinitis around it. But, not inflammatory tendinitis, more degenerative. He's going to send me to physical therapy. Not a injection, not surgery. But, someone to hopefully alleviate the pain and fix the problem. I read a little about it, and it's common for people with knock-knee, which I have. And, knock-knee is common for people with JRA, which I was diagnosed with.

It's Raining, It's Pouring...But I Have A Electric Blanket.

I'm still in pain from yesterdays gym mistake. I know I shouldn't have tried running. I did this to myself. I just wanted to know if I could do it. It just sucks because I know I could lose weight so much faster that way, if only I were able to.

I've lived with my family for the past year. They really helped me through a couple surgeries. But, sometimes, I feel like I need to remind them that I have arthritis. Everyone seems so surprised when I have a good day or two, then I'm hurting. It's like, where did that come from. Why are you hurting? Maybe you should call your doctor. I laugh sometimes, because I'm so used to the disease. I often feel like they should be too.

I had a lot of errands to run today. Tomorrow is a coworkers birthday, and I'm in charge of decorating her desk. I drove all over town looking for decorations that weren't child themed. Then, I had to get her a gift. Gift cards are the best invention ever. I also had to pick up Valentine's cards to mail to my nieces and nephews. Kids love mail! I was so tired by the end of all that, oh, and it's rained all day. I came home and crawled under the electric blanket and ate lunch in bed.

I'm still in bed resting, my legs really hurt. Oh, and when I picked up the Valentines cards, I also grabbed a yoga mat so I can hopefully start doing some stretching at home.

Dear Treadmill, We're Over. It's Not You, It's Me....and RA/OA

Xeljanz is really helping and has changed how I have felt the past few months. My fatigue has also improved, but I still have those days that I find myself falling asleep driving home from work. My rheumy explained the difference between active RA pain, fibromyalgia pain and damage pain. Knowing the difference helps to understand how to treat the pain. I think most of my pain these days is damage pain, but it's also followed by fibo pain.

I wanted to take advantage of my good days. I have recently restarted the gym. I have put no pressure on myself, and have not set any goals. My main focus is to get my body moving. Last weekend was the first time, going with my brother helped break me in. I wasn't able to go all week because I had a migraine that lasted FOUR days. I went again today. I know that the treadmill is bad on the knees, but it feels good to walk. Then, I had the bright idea to jog. I could literally feel my knees banging against each other. Such a bad idea. I wanted to cry because I couldn't do it, and because of the pain. I'm laying in bed now with the heating blanket on high, in pain still.

My knees have a lot of damage and that's usually what hurts me the most. On Wednesdays, I'm on my feet all day. Like clockwork, Thursdays are filled with pain and swollen ankles. I mentioned this to my rheumy. She suggested I wear a knee brace when I have to be on my feet. It actually made such 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.

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.

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?!

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