I decided to just bite the bullet. Write it and post it....no looking back. So here it is. A nice, neater version of my life. There is more details but you don't need to read them, not yet anyway. And I am only doing this because I believe this is cheaper than therapy. You are my therapist. My support system. You have my back, right? I can whine and complain and you will still love me, right? Gee, I hope so. We have a long couple months ahead.....
Remember in High School Health class when you learned about the Immune System? It's the part of your body that attacks outside stuff like germs, bacteria, etc. In most people it does a nice, quiet job and no one even notices it. But not me. I have an Auto-Immune Disease, which means my body attacks itself. I have Sjogrens, which is like Lupus's drier cousin. I say drier because it attacks your moisture producing glands first. In some (most?) people it stops there. Some people just have dry eyes or dry mouth. Not me. I hit the jackpot. Mine affects my entire body. And Sjogrens brought along its bald-headed step child Fibromyalgia to the party. Yay me! Ugh. So what does this mean for me. Pain, lots of pain and disabling fatigue. Think Mono....but WAY worse. In the 2 1/2 years since I got sick I now have slight eye damage, have lost 5 teeth (when your mouth is dry it decays your teeth at a very fast rate), arthritis in just about every joint, unbearable fatigue and pain. Muscle pain and joint pain. EVERYWHERE. I spend all day everyday in pain. It sucks.
Now....for my upcoming treatment changes. Currently I am on million and one different pills each day. ok, maybe not that many but close. I also take Enbrel shots twice a week. I started these back in September and they have helped. They have lifted a lot of my brain fog and eased the fatigue. I still have to nap everyday and pace myself but I can see a difference. Woo hoo...right? Wrong! My Rheumatologist is taking me off. My PCP jumped the gun when he put me on it and my Rhemy is NOT HAPPY. So next week I go to my PCP and stop the Enbrel. Then I have to wait nearly 2 months before my next appointment. Where I will be starting Methotrexate. Which is a cancer drug. And it scares me. I am hopeful that it might help. But I am still scared. Scared that it wont help. Scared that it will, but I will also loose my hair. And I am totally petrified of my nearly 2 months without Enbrel before I start the Methotrexate. Before Enbrel I could barely function. So what happens after I come off?
One more issue to throw in this mix. I have the big E. Which is mostly controlled. Mostly. But when I started Enbrel it threw my body for a loop....and I had 3 seizures. So now what? Will I have more when I come off? Will the Methotrexate cause any? So many questions.
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About Me
- Denise @ Sunflowers, Chocolate and Little Boys
- Im a Christian Stay at home mom...that means I am a professional multi-tasker and I give all the credit to Jesus. I am married to my best friend and have 3 wonderful sons. God didn't promise days without pain, laughter without sorrow, nor sun without rain, But he did promise strength for the day, comfort for the tears and light for the way.
19 comments:
{{hugs}} I am here for you!
You are one amazing woman:) I had a tiny bout with fibromyalgia and it completely sucked. I cannot even imagine what that combined with everything else you are dealing with must be like.
I am here for you, sister:) Any time, any place...I'm here.
Sending you loads of well wishes and hugs!
well, first of all, i hope you feel good about opening up to us. thank you for sharing your problems and giving us the opportunity to help shoulder the burden.
i hope the treatment changes will result in you feeling so much better... no pain, more energy!
it does sound like it might be a couple of rough months coming off the enbrel, but you never know, and you are so strong AND you have such faith. lean on it and us, girl!
First, you are right - we totally have your back & are here for you!!!
Second... my goodness... you've been carrying alot on your shoulders... how badly you must feel. I have dealings with Fibryo myself so that alone is a struggle, but add the other conditions - dang it!
Have you told the doctor on your reliance on the one drug & how you are without it? maybe there is something else they can give you besides the cancer pill? Dont settle - ask questions - stay on top of doctors! Let them know you want the best & arent willing for anything less!!!
I'm adding you to my prayer list right now!!!!!
HUGS!
Sorry to hear that things have been tough lately.
I had a shot of Methotrexate when I had the ectopic pregnancy. I knew it sounded familiar.
(((HUGS)))
I'll be thinking of you...
So glad that you are able to share publicly your private challenges and fears that you currently have.
It appears that your body is out of balance. My hope is that they find a way of changing your imbalance and putting it back to a more manageable way of living your life.
Though I am not familiar with many of the physical issues you are facing, I hope that you know that we are here to support you spiritually.
You are dealing with so much, but you do so much with your family all the time.
I can relate in a small way as someone who deals with depression. It's a very difficult process to find the correct balance of medications to make life feel o.k.
Reach out if you need to.
xoxo
Sharing always helps even if it's scary! My mother had very bad RA. She was or is on most of the medications you are. Some have helped and some have not. Docs are a pain in the keister. Good luck, try and stay positive!
See, I knew your blog friends would be here for you. I feel bad since you got the bad immune system from me and my health issues. Of course I am here for you too... Always... I am glad you shared with everyone... ({Hugs}}
I had no idea!!! I'm glad you shared and I hope you feel better about it. It sucks that you have to go through all of this. My mom had R.A. and that was bad enough. To had arthritis with everything else is just too much..
I don't know if you've checked out Andrea's blog, but she's got fibro too. She's just started to blog about her meds and stuff that she's going through. Here is the link if you want to check it out!
http://werethosewrinklesthereyesterday.blogspot.com/
OK, this is WAY worse than my boil I posted today, so just ignore my post!
I am so sorry!
now that I know where you are.... I am sorry :( I spent about 3 years trying to figure out what was wrong, took them that long to diagnose me properly and then another 2 to get the meds I should be on, and I am still working things out. auto immune chronic illnesses suck!
soo sorry
Aw, I am here for you and will be praying!! love you!!!
You can whine all you want. I have your back. You deserve to whine, and screan and rant. It's okay. Don't feel bad about whining either:) {{{HUGS}}}
wow girl! I would have never known! I'm so glad that you shared your heart and are being so open about the struggles. I can't imagine. I prayed for you.
I just can't get over how many women I know getting this fibromyalgia - what in the world is going on with our bodies!? as illnesses & sicknesses increase?
is our DNA just getting weaker as time goes on - I believe so.... just the result of living in this broken world?
I don't know! but I know there is one promise that He always keeps --- and that is that He doesn't leave us nor forsake us!!
OH, sweet, sweet Denise! Oh how I thank you for stopping in to say "hi" on my blog... I'm sorry it took me so long to get on over here to see you! And you know the strange coincidence? I was JUST reading about this... ALL this! Hugs, BIG hugs to you, my dear. I love to meet other Christians... and I will say that I will be praying for you. I have a friend with fibromyalgia... and I've seen her and heard the horror stories.
I just love blogland... so many supportive people out there! I am adding you to my blog roll... I will be back to visit, and see how you are doing!
Peace and Blessings,
Shannon ;)
Oh my goodness Denise.
I am terribly sorry to hear about all of your health issues.
Pain all the time? Gah! My heart really goes out to you.
I feel for ya sista!
;) {hugs}
Thanks so much for the recent comments on my own blog. You are so sweet! I'm glad Young Mama sent you my way.
Since I myself suffer from Fibro, I know how horrible and unpredictable the illness is and how hard it is to ask for help. I've dealt with it for over 15 years now and I'm still trying to learn that fine line between taking it easy and over doing it. And asking for help never seems to come easily to us does it?
Learning how to give in and rely on someone else for daily things we may need help with is very humbling. Then when we finally do find something that seems to help with the pain and fatigue and the doctors take it away, it seems so unfair! Did the doctor say they may be able to put you back on it at a later time?
There is one thing you do need to remember though. Doctors work for YOU. YOU are their employer. YOU pay their salary through your insurance so they need to take your suggestions and questions and appointments very seriously. If you are scared or unhappy with a treatment plan they want to put you on, please express that to them. I spent so many years afraid to speak up or challenge what the doctors said to me because I figured they would know best. But please remember that only YOU know your body the best.
I hope whatever it is that they put you on, that you get some help and relief! You definitely deserve it!
Oh jeeze Denise! That totally sucks!! :( It's horrible that you have all these health issues :(
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