My Emotional Enemy

I'm getting nauseous just thinking about it. I'm starting to wonder if I'm ever going to be able to get off this ride. I know that a lot of people suffering from Rheumatoid and Lupus deal with people asking them why they are hurting and have to deal with people judging them based on a serious lack of understanding. I am blessed to not have that problem in most of my daily encounters. I'm in nursing, which means that my co-workers understand the disease process and they do so without feeling sorry for the 23 year old inflamed chick. For the most part my family understands and if they don't they are smart enough not to say anything to my face. In this instance I am my own emotional enemy.

I have always tried to stay active and try new things, but it is more difficult than ever to stay active. I'm trying to find new hobbies to stay entertained and busy. All I have so far is poker. I'm getting better. I'm not as good as the people I play with but it works well for me and the disease. I can get good at it and I can do it as often as I please, but I don't enjoy putting up real cash to do it. We are in a recession, it just seem wasteful when I lose. I've also started learning yoga poses on my own with a sweet app in the 'ol iPad. The only thing I totally hate about yoga is that it is so hard! Those people on t.v., even the regular people I've watched in classes make it look so easy. Well let me tell you first hand...It isn't easy. I'm going to keep trying though and even sign up for a couple of classes in hopes that it will become easier and in the end I will have a smokin hot body! Though the most punishment I recieve from my enemy is learning to deal with the uncertainty.

There always has to be a plan. If it must be done, there must be a plan. With my days being as crazy as the weather in the Midwest, it becomes really hard to have an effective plan for the day. How am I supposed to make plans for the future if I can't even make a reasonable plan for one day? I hate the feeling of being unprepared. I've come to the understanding that we get thrown curve balls here and there and you just have to deal with them. What are you supposed to do when everyday is one big game full of splitters, curve balls and strike outs (GO CARDS!)? I don't know what to do and since I'm usually already super tired anyway crawling in to my king size bed, turning on some Law and Order and going to sleep seems like the easiest and best thing to do. I know I'm just running and this is the perfect way to not think about it. But I'm not sure how to feel and I'm realizing think that I want to live in my "RA Reality".

Hopefully soon I can come to my senses, really get on board, become more flexible and really think about the next steps im going to take. Ultimately I'm responsible for what happens next and I should be prepared. As I make these uuber dificult steps, I'll keep you posted.

Keeping a journal makes me feel like a Slave

SLAVE?! Yes, I know a little dramatic, but I'm being forever serious. Like I said in my previous entry, that when I was in school I stopped keeping a journal and even attempting to keep track of the disease in any way.

Recently I have been on the climbing slope of my flare bell curve. I decided that I would go ahead and keep track of the flare day by day with the memo app on my iPad. I find it easy to use when my hands hurt because I only need to touch it lightly to type, unlike my 17" dinosaur laptop. Typing on that thing in flare feels like I'm tyring to break my finger tips off one key at a time. My most recent 12 hour shift at work was difficult to say the least, but I had my iPad attached to my hip so that I could make sure that I noted changes and any self treatments. I decided that my the days that I'm in a flare I should keep more detailed notes so that when I get insurance and an appointment with a doctor (hopefully) we can learn to recognize triggers, auras or a cycle. Also because I may not have a doctor for a good long while, so when I do see a doctor I will have day by day proof of flares and pain. I'm not half steppin with these doctors anymore. I'm going to start being just as aggressive with doctors as this disease is with me.

They walk in stare at their notes, ask the most generic of questions, then they decide that they would like to squeeze your already painful, stiff joints. Write the fastest generic prescriptions and run out of the room. No 'How are you feeling today?', 'Are you having any concerns?', 'Have you already done a treatment that HAS NOT worked for you before I prescribe you all the same crap?', and my dream question....'Is there anything that I can do to help you?' Oh, it feels good to dream!

Even though I know I keeping a journal is for my own greater good, being so detailed with my notes along with the actual flares and what not, make me feel like a slave to the disease. Being able to flip though pages and pages that equate to days and months almost makes feel hopeless. I sit back and ask myself when will it end? Will this ever even out and be controlled? This hopelessness is cyclical. Because keeping the journal kind of makes me depressed, I stop keeping it, then at doctors appointments I have no real hard evidence to show, in return I have to rework my way up through the same treatments that didn't work before. Go figure?!

For now I guess I am a Slave to RA. I'm a serving a life sentence strapped to my iPad, unless I get off early for good behavior. : )  I'll keep you posted.

Introducing...Mrs. Jessica Sloan

 

Yes! The rumors are true! October 1, 2011 my fiance and I were wed! It was a beautiful day after a lot of stress and drama. We did it and couldn't be happier. We celebrated our day one week and one day after I graduated from LPN school and we moved into our new place. A lot of you may know of my previous residence...with my MOTHER-IN-LAW. We are so happy to be in our own place again. It makes a difference and is so nice. Even though we are still in our honeymoon phase, my RA has not been on the same schedule. I know what you're thinking. "Well, Jessie that's you won fault you over did it!" And I say to that SO WHAT?!? But seriously, I knew that after my last couple days of school that I was going to flare either the day of or after graduation. I just figured we would try and get all these things done if I'm just gonna flare anyway. And boy did I. It went in waves all the up to the wedding day. By the end of that day I was just putty. (It was like 50% RA and 50% Champagne) 

I have started working as a GPN (Graduated Practical Nurse). This is a new exciting chapter in my life and I'm finding it hard to keep up. I'm working 12 hour night shifts. I like the shifts because I'm not missing quality time with the family and because I only work 7-8 shifts a pay period, instead of 5 or 6. Its great, but by the end of the night I can hardly move. I'm hoping it won't be this way forever.

I thought that I had come to term with my diagnosis and it turns out that I really haven't. After starting school again and losing my health insurance, I kept my focus only on finishing school. I stopped journaling, doing research and being active in my online rheumatoid support groups. Instead of dealing with the flares and taking care of myself, I just became angry. Looking back at my reactions now I must have looked like I was trying to run in muddy swamp water. Thinking that I was moving quickly and making progress and getting things done but really just digging myself deeper. Deeper in my disease in this case. I think I do need some face to face support to help come to terms with everything. I think I'm still very much in denial. When people ask about why I'm limping or don't feel well and I have give explanations, I smile and shrug it off. In my head I say it aloud, its there and then it rolls all the way down to my feet and I kick the thought away like a huge hairy poisonous spider. When I'm in a flare I just try to watch as much Law and Order as I can and sleep until I can't sleep anymore, just so I cant find time to think about it and sulk in my pain and ickyness. I'm going to get back into the groove of things I hope. I plan to remove myself from this cloud of denial soon... with help from my Husband! I'll keep you posted.