Thursday, April 28, 2011

Light at the end of the tunnel

I've decided to share this on my blog as my fight against Sarcoidosis has affected all aspects of my life. My ability to cook, sew, clean, shop.... everything.

Many of you have been with me through my journey the last three years as I've gone through treatment for my Sarcoidosis, but many of you are new to my life. Therefore, I will do a brief beginning to explain to some and if you want to skip it you may :)
A little over three years ago I was diagnosed with Sarcoidosis. A silent, auto-immune disease that has wrecked havoc on my body, my mind and my poor family. What was supposed to be a year long treatment has turned into three and a half and I am still not in remission. Sarcoidosis is never "cured" but made dormant til it rears it's ugly head again and then you get to start treatment for it again. Many have no idea of the illness itself as many of the articles make it seem fairly insignificant and this can be true for some. Unfortunately, I have a chronic case that they cannot get under control. I try to not complain about how it affects me day to day. If I did, many of you might make excuses to keep your distance for fear of having to hear my whines constantly. When you see me, I am not ok. I AM in severe pain. I have trouble breathing. My mental state is such that I can cry at the drop of a dime. I want to give up. I can't take it anymore. I've even wanted to die. Now that is just from the Sarcoidosis, the problems of long term steroid (Prednisone) use also make the illness ridiculous. I won't bore you with that also. Instead though, I keep it inside, put on my smile and try to be Superwoman. It's easier that way.

Fast forward to a month and a half ago. I went to my family doctor for my 6 week standing appointment and tell him about the pain in my fingers and toes. It's becoming unbearable and I'm worried that because I am at the end of my treatment time frame for this one that everything is flaring back up and I will have to start over again. I can barely write with a pen or pencil with my right hand because of my thumb joint and on my left hand my fingers hurt so bad I'm in tears by the end of the night. The joints in my toes hurt so bad that it hurts to walk so I end up looking like some old person who needs a walker. He feels that I may have ANOTHER auto-immune disease working against my body alongside the Sarcoidosis. ERM WHAT!?!?!? Lucky me. Even luckier, the new specialist (Rheumatologist) can't see me for a month and a half. Here's some Vicodin for the pain. Yay! (not)

(Skip all the whining for the last month and a half)

Yesterday I have my appointment with the specialist. She's a really nice woman, young, very caring, didn't push me out of the office quickly, she listened and was caring. We talked, she asked questions and lo and behold, I have another auto-immune disease which oddly enough can attack your joints. Apparently I have Psoriasis (I've had spots on my hands and fingers for the last few months that peel off, hurt like hell because they are raw then heal over) and the Psoriasis is causing Psoriatic Arthritis which is what is making my fingers and toes hurt so much.

What are we going to do about it?? Well, there is light at the end of my long, long tunnel I tell you! Once my insurance company approves the drug Remicade (she's not had anyone refused yet) I will begin on a 2 hour long IV infusion of this new drug. I will have the first one, then two weeks later the second one, then 4 weeks later the third one. After that, every 8 weeks I will go to Arnot Ogden in Elmira for the 2 hour IV infusion which will be for the rest of my life. The upside is, this should put my Sarcoidosis into remission (forever! as long as I'm doing the infusion) AND take care of the Psoriatic Arthritis. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAND this is the drug that is going to get me off the Prednisone!!! It will work in conjunction with one of my other medications which I will continue to take but they in no way have the side effects and do the damage to my body that the steroids do.

What does this mean for me?? I GET MY LIFE BACK! Once off the steroids my diabetes will go away (already known that it is steroid induced), so say goodbye to two medications I take for that daily. My blood pressure will go down, say goodbye to three medications I take for that. I can start to lose the 100 pounds I've put on over the three years of taking the steroids WOOT! The puffy face and water retention will go away. I'll feel like moving, I'll have energy to do things. I won't need 2 naps a day on top of sleeping all night. I will be able to clean my house, do things with my family, I can even go back to work!

I do find it a little odd to be excited about being plugged up to an IV for 2 hours ever eight weeks for the rest of my life but, it seems like such a small trade off to get rid of the steroids.

Roid Rage" and yes people it IS real. When I've hid things from you all, my poor husband has gotten the brunt of it. He has dealt with my inability to be a good housewife, a loving wife, a fun wife and many other things. I don't know that I could have gotten through this without him by my side and I thank him from the bottom of my heart.

To my friends, you also have had to deal with my last minute ditching you, my occasional pity party and not feeling like coming out to play. I also thank you for sticking by me, for being there for me, for listening to me and for loving me. I am so lucky to have such a support group and you have all been instrumental in getting me to this point. In 5-6 months I should be in a place that I am feeling better and seeing results and on my way to being even more awesome :) I know it's hard to believe that I can be even more awesome but believe it baby! BRIDGETTE IS BACK!

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