Thursday, January 27, 2011

A Sad Day For Me....

Well, this is going to be a personal blog entry....not my usual sarcasm...although I'm sure some of it will come through.  I don't like to talk abut what I'm going to talk about....mainly because I really wish the subject would just go away.  I don't like to bother people about it, don't like to talk about it, don't want to acknowledge that it's happening to me, or that I've fallen victim to something, because that really pisses me off. 
I have had Rheumatoid Arthritis for years now...officially diagnosed after I had Payton, but when I look back it started after Taylor.  What is RA?  It's an autoimmune disease, and it sucks.  It is my body attacking my joints...every joint in my body.  It causes extreme fatigue, aches, sharp pain, swelling, nearly every joint in my body.  I hate this thing.  So evil.  It has taken away a part of me I hope I can someday get back...but right now I don't know if that will ever happen.  I have good days, and I have really bad.  Basically it's like having the flu every day...the sharp aches and pains, fatigue that I can't explain....a desperateness in my body I just can't get a hold of.  My knees are the worst...I have the ugliest knees you have ever seen...they have swelling in them ranging from a golf ball to a tennis ball every ball is good, tennis ball I'm not leaving the house and I'm crawling up stairs.  The thing that really sucks is that RA is really an invisible disease.  I'm not losing my hair, having surgery, there are no marks on me.  It's an internal battle every day.  Every hour.  One hour I can feel fine...the next I'm in tears.  I think of it as a "thing" that I want to hurt, battle, destroy...but unfortunately most days it's doing this to me.  I don't really talk about it much....I just want it to go away.  But it's not.  I have had to take huge doses of steroids in the past few years....and while it has gotten me through, it's not working anymore.  The only thing it is doing now is making me gain more weight.  And the steroids have really awful side effects...not what you think of when you think steroids...they aren't the anabolic kind...I'm not entering any weight lifting contests!  They are starting to affect my organs, my bone density, and they are making me pack on weight that just is not healthy.  I went off my biologic shots when I wanted to get pregnant with Sawyer, was pregnant with him, and while I'm still nursing.  But it has gotten so bad I can't do it anymore without this drug I hate to take.
This is my Humira shot.  I have to self inject it every other week now.  And god does it hurt....burns like hell as the medicine is going in.  I hate this thing.  It has side effects too..the biggest is putting me at a risk of developing lymphoma.  But what to do?  I have to take that risk because I'm not functioning.  RA goes into remission when I'm pregnant....hence I LOVE being pregnant!  I feel more normal pregnant than weird is that?  But after, it gets worse each time...coming back with a vengence.  So I finally had to give in.  And I feel like such a failure.  I don't want to rely on this awful thing...I want to be and feel like the person I used to be, and it makes me so sad that I'm not a strong enough person to do it without this. I want to be able to beat this by myself, not rely on this medicine that costs $1500 a shot (thank god for insurance...never underestimate your insurance!) and has to be drop shipped to me from a specialty pharmacy and it's like trying to get national security clearance to get delivered to my house. 
Damn this thing!  Go away!  It will take 6-8 weeks for the shots to take effect as it builds up in my body enough to make a difference...hopefully it works again.  It did after Payton....but it can change.  I will start weaning myself from steriods soon too...and hopefully my gut and my moon face will go away too. 
I guess the biggest thing I'd like is for people to realize that just because people don't have an outer symptom, they may be really hurting inside.  I try to remind myself of this every day...when the lady at pottery barn was a complete bitch to me last week as I was rolling my stroller around I tried to remind myself maybe her snapiness is not me, that she has some inner pain.  People with chronic pain and diseases like this don't want sympathy...I hate sympathy.  I don't want to accept sympathy because that to me means I'm giving in and I'm weak.  I hate weakness in myself.  I just need understanding.  I need to give myself a break and let myself be weak for a minute...but if I do I'm afraid I'll never get back up. 

Okay...done.  Pity party, griping, and airing my dirty diseased laundry is over.  Time to buck back up.  I wouldn't wish this on anyone, and if it means me having it and prevents someone else, like god forbid my kids, getting it, I'm happy to take it.  Good health to everyone...and remember in your daily interactions with anyone, sometimes pain is really masked.  Being nice matters....and thanks for being nice to me!  :)  I'm very lucky to have the people in my life that I do!


  1. Oh Rachel, I'm so sorry sweetie! You are right and it is a great thing to remember, that everyone carries some kind of pain with them and it can and does affect the way they appear to others. Thanks for the reminder and I hope you get relief soon!

  2. Rachel--Thanks for reminding us of the daily battles that many of our friends as well as strangers endure without us appreciating it. You will continue to teach your children how to overcome struggles with good humor and strength. If I didn't already think you were a rockstar, you are even a bigger one now in my book! Hang in there, sister!! xo