My Disease Rant

This is a tough blog post for me.  In previous posts I’ve mentioned I’m extremely private, and no aspect of my life better demonstrates this than my reluctance to discuss my medical condition.  I basically don’t say anything to anyone about it (at least I haven’t in the last five or six years).  But, for those of you who are asking, and are concerned, I've decided to post a blog with some of the details so that you have a better idea of what I'm facing and how I feel about it.  I appreciate that you, whoever you are, are trying to find out more.

Off and on for the past two weeks I have been working on a post about my illness.  I have written, deleted, written more, edited, written more, started over, written again, etc.  Last count I had enough material for a small book and figured I wasn’t even close to what I wanted to cover.  I just can’t seem to capture all I want to say in a succinct enough form (which, ironically, is one of the side-effects I face with this illness).  However, for now I'm going to go with the condensed version.

I actually have several things wrong with me medically.  The main disease I face is Severe Rheumatoid Arthritis.  I hate the name.  Technically it's a genetic auto-immune disease (luckily it's not contagious, although my boys are at-risk for developing the disease), but the name seems to cause a lot of confusion.

Many people hear the word Arthritis and immediately think of Grandpa Joe who used to have arthritis in his right knee, or Aunt Betty who gets arthritis in her shoulder when it rains.  That’s Osteoarthritis, and although it sucks to have, and can hurt like the dickens, it’s not the same as Rheumatoid Arthritis (RA).  Other people hear the word Rheumatoid and start to talk about people they know who have the “rheumatism.”  Again, not the same.  Actually, the disease called “rheumatism” in the past is now widely believed to be Fibromyalgia, which I have also.  By the way, many people who have RA often get Fibromyalgia (like it's not bad enough to have one sucky disease).  Some of you may be familiar with Fibromyalgia and know that it's a pretty nasty disease to have on its own.

Some people have heard of RA.  They either know someone who has it or they've seen the commercials on TV that talk about living with RA (you know, the commercials that spend 5 seconds telling you their medication will help and 5 minutes warning about the side-effects?).  Unfortunately I've progressed past the regular RA stage and am now diagnosed as having Severe RA – which basically means parts of my body have suffered irreparable damage and the traditional medications are no longer very effective.

So, I have Severe RA and Fibro.  Left untreated Severe RA would kill me fairly fast, at least that’s what I’ve been led to believe.  Luckily I do treat it.  And yet still the disease has advanced quickly, which sometimes happens.

But, even with treatment, I experience constant pain.  I've been through a lot in my life: broken bones, car accidents, shot in the head, surgery, and so on, but RA has given me a new appreciation as to how bad pain can really get.  But, even though RA causes pain I did not think possible in a human body, I’m amazed at what I have learned to live with, mostly because I don't have a choice.

What sucks even more is sometimes the constant pain, even with treatment, can flare up and become unbearable.  At those times I can get strong enough medication to find relief, but then I lose days either sleeping or being so drugged that I can barely function.  I hate that feeling.  Hate, hate, hate that feeling of being drugged, foggy, a zombie.  And so I stubbornly resist as long as I can, yet I admit, I sometimes give in to that which I hate.  Such is my life.

The treatment itself has a lot of really sucky side effects too, some of which are themselves very dangerous and life threatening.  I love warning labels that say taking the medication has previously led to death.  Wonderful!  I’m not even going to try to cover all the side effects I deal with.

One component of my RA treatment suppresses my immune system.  Because of that I easily get infections.  I pretty much live with a constant skin infection these days.  I also have to be extremely careful around sick people.  I am told that with Severe RA it will be an infection that will most likely kill me.  So the idea of catching a cold, having it turn into pneumonia and then drowning in my own mucus has no appeal to me whatsoever.  I tend to run when someone sneezes.  Even so, I get sick often.  A simple ear or throat infection can take me months to get over (trust me, there's just nothing like the joys of a three month ear-ache – here's a nice gross example:  I once got a fungus infection in my mouth so bad I took pictures of it because I'd never seen anything like that in my life; I mean, I had no idea something like that could happen to a body that hadn't been buried for at least six months).  (And by the way, I really don't think it's fair that someone who has a terrible disease should also have to deal with normal things like the flu; I mean come on, give me a break, isn't life hard enough for the diseased already?)

I also have no control over how I will feel each day, even if I'm not sick with the flu, or some type of hideous infection.  I can do everything right and still have a flare-up.  If I do too many things wrong though, I lose a month or more trying to get back to what I call normal.

But, I usually have a few hours each day where I enjoy limited pain and can do fun things like write, or maybe if I feel well enough I can go out in my back yard and fuss with the garden.  I don’t leave the house much though.  Outside of the house things come at me fast, that’s about the only way I can explain it.  The whole world moves faster than my brain can take in and organize, and it’s not long before I have a massive headache where I can’t think straight and often can’t even talk normally.  I sometimes refer to it as a massive white sphere of pain inside my head.  So I don't leave the house very often.  And I don't ride in a car very often either because if feels like I'm being beat with a baseball bat and usually takes me three or four days to recover.

I don't talk to folks very much either.  Sometimes I get the headaches when I'm just trying to have a normal conversation.  Because of that I don't entertain company very often.  There's just nothing like having a Migraine-sized headache while stuttering through small-talk.  I admit that I miss the socialization, but it's hard to explain to folks that sometimes I feel so bad I just want them to go away – I always feel guilty about that.  But I don't know what else to do.  I can be talking to someone and then bam, the headache starts, I can't get a sentence out, I don't even remember what we are talking about, and I just want crawl back into my room and try to hide from the pain.

I'm not telling you these things to whine (trust me, I can whine a lot better than this), but I'm hoping that you can at least understand more about what I'm dealing with and why I act the way I do.  Having this disease is no fun (not that I really expected any disease to be fun). I regularly miss special functions, like birthday parties.  I've spent the last four Christmas Eves sitting at home by myself because I was too sick to leave but didn't want the rest of my family to have to stay home and miss out on the fun. (Okay I was whining a little on that one.)

I guess the point is, the disease has changed my life tremendously, has limited what I can do, and most of the time keeps me busy with taking medication four times a day and dealing with constant pain.  However, I haven't lost my faith, I have a wonderful family and a really good Rheumatologist, and I try each day to find as much productivity and fun as I possibly can.  I admit that I've scratched off weeks and even months as a total loss, but I have pockets of enjoyment in my life and I've learned to really, really enjoy them when they come along.

I love blogging because I can share my thoughts while I sit in a quiet and fairly well controlled environment (that helps me think).  I sometimes write my posts on my word processor so that if I get to feeling bad in the middle of one I can just save it and come back to it on another day.  I love getting e-mails and reading comments on the blog, so feel free to contact me anytime.  I may take a little time to get back to you, but just trust that I'm thoroughly enjoying your e-mail or comment in the meantime.

I've noticed this post got huge, so I'm going to put it up as its own page.

There are a few things I feel the need to point out.  I don't want you to feel sorry for me – that's a waste of time for both of us.  I have the disease, it sucks, I'm moving forward.  But, and it's a big but, please continue to pray for me, because I know how powerful prayer is in my life.  I do still struggle with having a disease, because I just really, really don't want to have it.  But no matter how many temper tantrums I throw, or how many times I stamp my foot in frustration, I still end up diseased – so, I'm trying to deal (I don't really stamp my foot because that would hurt a lot).

Oh, I thought of something else I should point out.  In 2006 I had a flare-up so bad I ended up in the hospital for several days.  (Hospitals suck – it's a terrible place to go when you're sick.)  During the flare-up and my joyous (not) hospital stay, I seemed to have suffered some brain damage (at least that's what I'm calling it), because I forgot a bunch of stuff, like years of stuff, events, people – I kid you not.  Some people were wiped completely out.  I'm not just talking it's hard for me to remember them; I'm talking about having nothing in my head about them, not even a fuzzy remembrance.  So, if you happen to be one of those people, I apologize, and I look forward to getting to know you all over again.  And if I say I can't remember something, I, unfortunately, am not kidding (some of you remember how I used to never forget anything, but those days are long gone).

By the way, I've always sucked at spelling, so even though I wish I could blame my mistakes on the disease, I can't.  However, I feel that having an incurable, terminal illness gives me license to misspell whenever I feel like it and not really care anymore – if you don't have a disease I hate to admit you have no excuse so break out a dictionary and learn to spell.  My grammar seems to fade in and out too, sorry.  However, my imagination is still pretty good, and the story ideas just keep flying into my head, so I hope you take the time to read some of my books and I hope you enjoy the stories.  I'd love to hear from you about what you liked in my books, so please drop me a line, comment, e-mail, etc.  (If you have something negative to say about my stories, please don't, after all, I'm diseased already, give me a break.)

I love you in the Lord!  Thanks for taking the time to read this really long rant about my disease.