The Good, The Bad, and the Not-So-Ugly

Oh my, it has been a while. I feel like I owe you all an apology and a really big excuse. Here it is… I’m sorry and after spending a little over 3 months from, August through November of this year, on my duff with the only escape being my computer, the thought of spending anytime on Facebook, Pinterest, or even WordPress was so repulsive to me that I could hardly stand the thought of sharing a blog post. And now after that terribly long run-on sentence you’ll note that I am severely out of practice with this whole writing thing. Lack of practice aside, it occurred to me that many of you don’t have any contact with me other than through this blog and I kind of left you all hanging. Sorry about that, truly. I know that I should have shared even a simple update. I just couldn’t bring myself to do it. In fact, I started this post more times than I can count over the past several weeks and, after a few sentences, abandoned it for something that required the use of my legs. Having spent so much time not being able to use said chicken legs I’ve been itching for some activity. It has come at a price though which I will be more than happy to tell you about if you can stand a little information dump.

*Beep* *Beep* *Beep*

That was the sound of my huge dump truck full of TMI backing up… Just thought I’d give you fair warning before I let loose with the good, the bad, and the not-so-ugly (maybe.)

Whelp! Wow, you’re still reading… ok… good luck?!?

I think the best place to start would be the end. Seems logical right? It does to me. I’ll begin at the point where I last left you, a few weeks shy of the end of my recovery and getting rid of the accursed non weight-bearing equipment i.e., the crutches, walker, wheelchair… you get the picture. The good news is that the surgery seems to have been a success. The ill effects of the Avascular Necrosis in my hips have been abated. The bad news is that, as the doctor warned me might happen, the pain still remains. Aw well, we can’t have it all can we? The not-so-ugly is that at least I won’t need hip replacements for a couple more years. Yay me!

I met with the orthopedic surgeon on a Wednesday in November. Two days prior, on Monday, I had met with my Rheumatologist to discuss where we were to go from here on my autoimmune disorders. You probably remember that, in order to heal the Avascular Necrosis and recover from the surgery, we had to halt all treatments for the rest of my body’s misbehaviors. I was feeling pretty sick after those three months of no treatment and absolutely no steroids. Oh, did I not tell you? The best way to treat an autoimmune flare up and achieve immediate results is with some sort of steroid that fights the inflammation like, Prednisone, Cortisone etc. The problem is that any kind of steroid can exacerbate the Avascular Necrosis. The only option left to me during those several months was to grit my teeth and bear it. So to end my suffering sooner rather than later he decided that I needed to begin treatment that Friday, two days after the surgeon released me to do so. You’d think that I would be excited about that. Whoa! Hold your horses and I’ll explain why I was a little apprehensive.

Let’s review what that treatment option is. A drug called Remicade. You’ll remember that I was previously injecting myself with a biologic, Humira. I won’t go into the side effects and risks of that medication; instead you can read up on them here. Remicade has the same risks and side effects only my doctor refers to it as, “Humira’s big brother.” It must be administered through an IV infusion process. It is so toxic to the system that they slowly drip it in, the slower the better, in order to sneak up on your body. At least that is what the nurse told me when walking me through the process for the first time. Each infusion takes roughly 2 ½ to 3 hours to complete and must be done at an infusion center, usually a hospital. The first few doses are called loading doses which means that they are given close together to build up the medication in your system. After the first infusion I waited two weeks and had another. The third dose is meant to happen four weeks after that but it had seemed to help and I was so miserable near that final week that the doctor pushed it up a week in hopes that I might feel well for the Holidays. Doses from here on out are given anywhere from 4 to 8 weeks apart. Everybody is different in their needs and the amount required. We’re still working on what this will look like for me.

And now time for the good, the bad and the not-so-ugly of Remicade. The good, it seems to be helping… A lot! Ready. Set. TMI. My gut has tightened up, and by tightened up I mean that my frequent trips to the bathroom have become blessedly less frequent. This is very, VERY good! I can’t tell you how much I love that I only have to run to the bathroom 5 or 6 times a day as opposed to 10 to 20 times a day. I’ve also noticed that the spasms that usually hit my stomach and intestines after eating have backed off to a dull ache instead of “gut-wrenching” (ha ha, gut-wrenching, I’m so funny…) pain like my intestines are being pulled apart on The Rack.

The bad part is the side effects in the days immediately following my infusion. For a few days afterward I am so tired, sore, and achy that I feel as if I’m coming down with the worst case of the flu known to mankind. To say I feel as if I’ve been run over repeatedly by a freight train is the understatement of the century. Oh well, it helps me feel better after I peal myself out of bed and, so far, I think it’s working!

The not-so-ugly part… hmmmm. I’m still up in the air over this one. I’m thinking that the Remicade is helping but I still feel like I need to give it some more time before I’m absolutely certain I would like to continue. If it really is working we’re looking at a life-long commitment.

A. LIFE. LONG. COMMITMENT.

This is where we all sigh heavily as we let that sink in. So I’m still up in the air because, I have to be honest, after that last infusion I bounced off to two family Holiday parties and regretted it the following evening as I lay suffering from intense pain in the ER. At first I thought I might be having a nasty reaction to the Remicade, after all, it is pretty toxic. But after several hours of writhing in agony, the ER doc disagreed. Disagreed? How, you ask? Well apparently it was severe muscle cramping brought on by simply demanding much too much out of this worn out little body.

Ah well, don’t we all experience that from time to time. This is the curse of the chronically ill, right? We all want our bodies to do things that they can no longer do. We long for days past when we could pop out of bed and go about our day without a second thought for how we feel; that’s the problem isn’t it. We feel too much. Too much pain, too much fatigue, and too much sorrow for all that we’ve had to change, all that we’ve been forced to give up.

Yeah, yeah, so I’ve been a little down as I struggle to re-establish my life after such a dramatic recovery process. Truthfully, while the Remicade has helped, I still feel like I have miles and miles to go. I know I can’t expect a full recovery overnight but I must admit that in many ways I feel like I’ve taken some giant steps backwards in respects to my health. I put on my smiley, happy face about it all but sometimes it still eats away at me. For instance, every morning I wake up and feel as if I haven’t slept a wink despite the fact that I have, I really have. And when I say every morning, I don’t mean that this obnoxious phenomenon happens on random mornings, I mean it happens every single morning. I can’t seem to move past the residual hip pain that the Avascular Necrosis left in its wake. I feel like I’ve lost my moorings as I’ve digressed from a productive vibrant member of society to a weak and helpless lump.

Well, I always say that I love a good challenge so I guess my next challenge will be accepting my limitations and learning to work around them. No, that doesn’t seem right either. I need to accept my limitations and learn to love life through them. There. That sounds a little better. Here goes, I guess if I were to have a New Year’s resolution this would be it. I don’t expect overnight results, what I do hope to have learned is to have a little patience with myself as I “find my stride.” We all struggle to do this as life throws us curve balls. I think all of us at one time or another has looked at our lives and thought, “Well, this is certainly not going as planned.” I think the key is finding beauty in both the triumph and loss that we experience. Come on, let’s do it together, it’ll be more fun that way!

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14 thoughts on “The Good, The Bad, and the Not-So-Ugly

  1. I have a collection of autoimmune disorders myself, the most prominent of which is Ulcerative Colitis. My docs labeled me “steroid resistant” and pushed the Remicade this year, and I finally got SO inflamed that I had no choice but to try it, and it worked, but I don’t know that it is beneficial enough to continue (and I’m not sure if it may be preventing me from becoming pregnant because it suppresses your NK cells–which are needed for implantation to occur). I’m taking a break from it–was supposed to get my 4th infusion (I started July ’13) last week but I had my GI’s blessing to push it out and maybe even discontinue it. I sure as hell will not consent to be on it for LIFE–it is SO toxic–I feel better being off of it actually. Best of luck to you in 2014! If you ever want to compare Remicade symptoms you know where to find me! XO

    • Thanks for this… I’m glad to know that you’re actually feeling good after stopping remicade, that gives me hope. Good luck to you as well. I’m sure we can compare notes as the year progresses! 🙂

  2. When I read your posts, I am reminded of how brave I think you are. How honest. Even though I’ve never met you, you just exude a really beautiful humanity in your posts. I continue to keep you in my prayers. Keep on keepin’ on.

  3. So glad you’re back, but whew! What a lot of news! I hope things get better, that’s a lot of hard choices. I don’t know how you feel and I have no advice, but HUGS anyway. Hugs hugs hugs.

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