Back To Work

Today was my 3rd day back at work. I was glad to go back. But, by today, I was tired. My office was moving locations today. Getting back to a normal routine AND moving may have been a little much for me. My ankle keeps swelling. I'm due for my Remicade infusion tomorrow. I'm really glad too, this time around I feel like it wore off last week. I'm thinking about talking to the doctor about having them more frequently. My mood is so much better with work now that I'm on happy pills. I really think I let my mind get to a bad place when I wasn't feeling good. I did struggle a little with fatigue today, but not until I was driving home. It wasn't like it used to be, but noticeable.

Feels Like A New Person

It's been 5 weeks since I started Remicade infusion's. I have to say that I feel like a different person. I really hope this keeps up. I noticed about 2 weeks ago that my energy had significantly changed. I was able to get through the day without napping, and stay up later than 7! My next infusion is next week. And towards the end of the month, I'll have labs done again. I haven't really had any major side effects. My stomach bothered me at first. I have noticed that I am bruising a lot.

I go back to work Monday, that'll be the real test! I'm only going to be working 4 days a week. I thought that would be a better compromise. I know that I really need to take care of myself so that I don't end up in that horrible position again. To even try to explain the physical and mental effects that RA has is just so difficult.

I recently participated in a RA gift exchange. I received some Biofreeze! I'm kind of excited, I've never tried it before and really look forward to trying it. I also was given a book on photography. Pretty cool since I have a camera I don't know how to use well.

Here's my cankle! 

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.

Post Remicade Day

Yesterday was my first Remicade infusion. Today, I feel like I was hit by a truck. I feel so weak and my body is so heavy. Last night, I slept 15 hours! I need to take a break now.

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. 

I'm Not A Doctor, I Just Play One While On WEBMD.

Working in healthcare, I always tell my patients to stay away from the internet. Diagnosing oneself can lead to much anxiety.

I have followed a RA blogger for quite some time. Arthritis Ashley is well known in the RA and online world for her positive notes and resourceful links about health. She has recently written a new book, a memoir. Currently, I am more than half way done with it. It's a easy read, but with my fatigue it is taking longer than normal to finish a book. She shares about her diagnosis, symptoms, and getting through life with a autoimmune disease. While reading it today, I had a AH-HA moment. She was talking about her diagnosis of Chiari. I've heard her speak of this before online, but have never really known what it was. So, doing the patient thing, I googled it. The next thing I know, I'm emailing my doc asking for a MRI. My neurologist has never evaluated me for this and I have had many of the symptoms for years. Just last week, I was at a PT appointment and they asked me to stand on my tip toes. I nearly fell over. I have zero balance. My headaches are almost a daily occurrence, and the neck pain at the back of my head feels like I can't move my head left to right. And, lets not talk about the fatigue. I fall asleep driving home at 4 in the afternoon. What the heck?! Although, we never want a serious diagnosis, we always strive for answers. Something that makes sense. If I have this disease, then the symptoms would feel like they fit.

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.

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.

Fun Has It's Price

Last weekend I went to a "Heart and Stroke ball" put on by the American Heart Association. I was invited because I work in heart transplant. It's amazing to hear peoples stories and how far they have come because of research. Technology has changed so much over the years. It was amazing to hear how much money they raised, it  truly is a great cause.

 I was excited to have been invited because of my field of work, but also because it was a "ball" and I got to dress up. The couple weeks leading up to it was difficult, finding the extra energy to shop for a ball gown and shoes. Getting nails done, hair done. Yes, it was all for a fun night, but it later took its toll on me. The night itself was good, I felt well. Having not worn heels in so long because of my RA, I didn't think about how much this would hurt my feet. There was a lot of standing. Luckily, I was smart enough to valet my car at the event and not park in the parking garage a few blocks away. Sometimes, the extra price is totally worth it.

I rested the next day, but ended up getting a migraine that lasted for 4 days. I had to call in sick to work on Monday because I was so nauseous. People don't realize how much a migraine takes out of you. It knocks my body down. I can't focus, I can't eat, it is completely debilitating. I really think it's because I was pushing my body so much to get so many things done just for one night of fun. One night of "normalcy".