"Normal" People Are Lucky.

I am still waiting for the results of my sleep study. I know my symptoms and have been dealing with them for months.  Things are only getting worse. Most days I'm really tired, but the days that I fall asleep driving are the worst. I am pretty convinced that I have narcolepsy. If it's not that, it definitely has to be some form of neuro disorder. It is NOT normal to fall asleep driving to work after 9 hours of sleep. There is so much anxiety while waiting for these results. I don't want to lose my license. I have no idea how they treat this. AND, I'm set to start my Remicade infusion on Tuesday. I feel like there are so many things piling up against me. I'm barely holding on. I'm pushing myself at work, yet they have no idea what I'm going through. I just want to cry, and feel sorry for myself. I've been to my doctor 3 times to tell him how depressed I felt. This last time, he finally prescribed something for me. How do people live like this? And function? My only goal is to make it through the day not falling asleep, and to have controlled pain.

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.

Oops, I Did It Again

I honestly don't mean to piss people off. Maybe I should come with a disclaimer. The other day, my friend had asked me to go to a street fair. I said I hadn't been feeling well, but I'd like to go as long as I felt up to walking. Yesterday was a pretty fantastic day, but I did take advantage of all my free time by resting. This morning, I went to the cemetery to  take a flag to my dad for Memorial Day. I sat on his grave for almost 10 minutes. Mostly day dreaming, taking in the sun, and drinking coffee. When I was leaving, I felt really sick to my stomach. Maybe the coffee? So, I stopped drinking it. I came home and I've been on the couch ever since. I texted my friend this morning to say that I thought it was best that I just rest. It took a long time to get a response back. And, at that, it was a one word "ok". I didn't want to apologize, because I really didn't feel like it was my fault. I said that I would go as long as I was up for it. I'm such a bad friend.

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.

I Need More Of Days Like This...

I feel like today was a relatively good day. I woke up knowing that I did not have any commitments or things I HAD to do. That in itself is just so stress-less. Sleeping in felt great. I took my time getting ready for the day. I decided to go out and get a pedicure. I thought if I felt well enough, I would stop at Ulta after and pick up a few things. 

My pedicure was so relaxing. I love the foot massage and just sitting in the massage chair. I felt good enough after to venture into Ulta. I picked up my shampoo and conditioner, and even a new eye liner. After walking around the store a bit, and standing in line for awhile, I felt like I was ready for a rest. I came home and rested my legs and shopped online for a few hours. I decided I needed new summer clothes for my trip to DC for the 4th of July!

I watched some tv and spent time with my family for the rest of the day.

It was nice to feel somewhat normal today. I only took one pain pill. I'm realizing the balance between normalcy and taking care of my body. Rest is so important. I need more of days like this.

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.

Sleep Study

Waking up to someone next to you watching you sleep is one thing. A monitored sleep study, and one that is 2 days is a whole other story.

I think my doc was tired of hearing me complain about my fatigue. I've always attributed my fatigue to RA. I still do. But, doc wanted to make sure nothing else was going on since I was falling asleep driving home.

I've been on prednisone for 2 weeks now and the fatigue isn't like it was. Prednisone has always made me hyper or just helped increase my energy.

I checked in for the sleep study yesterday before 7pm. They had wires all over my head and face, even one on each leg. Surprisingly, it didn't really bother me when it came time to sleep. I slept through the night fine. But, I had to stay all day today for the second portion. When I woke up, I was to have breakfast and could either read or watch tv for 1.5-2hrs, then take a 20 minute nap. We did this process until a little after 4pm. I felt so dirty and cranky from being in one room all day. My legs were stiff from laying there. I tried stretching, but it didn't help much.

I'm so glad it's over and I get to sleep in my own bed tonight, without anyone watching me. Now, I sit and wait for results.

But, good news, I did get a email from my rheumy saying Remicade was finally approved by insurance. I can start my infusion therapy soon. Hopefully, that means I can start weaning off the roids.

Spoons

I often try to explain the spoon theory to people. Most of the time, I can't get someone to listen to the entire story. A lot of the time, I lose them after 10 seconds and they're just nodding. If I do get to finish the story, they usually don't get it.

I have always literally jumped or skipped as soon as I have a good day. Now that I'm older, I know that I have to use the good day energy sparingly. Last week was a pretty bad flare, it even took me to a bad place mentally. After just a couple doses of prednisone, I felt more alive and less stiff. I wanted to do more at work and at home. But, I know better. I took the day off work yesterday and even napped.

Today, I went to my sisters softball game. Of course having to get up and down a lot because bleachers are NOT comfortable to sit on. The game went pretty fast. I came home and decided to rent movies and relax the rest of the day. I have planned for months to take my sister and her friends to a concert tomorrow. I know that I'll be on my feet all day, so my current resting is to save my spoons.

Even with the resting, I do expect tomorrow's long day to have some affect. I plan to wear real shoes instead of flip flops so help my feet. And, I'll probably go into work just a little bit later on Monday.

All the planning is necessary. To think ahead and know how to handle your spoons makes a huge deal. If I don't do that, then I probably would overdraw my spoons.

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.

Handicap Placard

We've all heard the phrase "but, you don't look sick".

I seem to get the dirtiest looks when I use my handicap placard. It really bothers me sometimes. Almost to the point of wanting to park further away. But, then, I will be the one to pay for it. It hurts to walk most days. Most days you'll see me hobbling around. Apparently, that doesn't cut it for onlookers. They give this look, like "what's wrong with you". Sometimes, I even wait for someone to say it, so I can say the same thing back to them.

People with disabilities, even the invisible ones shouldn't feel guilty to use their placard. Having one only means your doctor has said that it would benefit you to NOT walk 2 miles through a parking lot.

There are so many people that DO abuse placards. My guess is that it's not theirs. I've had my proof of placard paperwork checked many times. Just because I'm not 90 years old doesn't mean that I don't need it.

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.