Monday, December 14, 2009

total bday weekend...my journey with Crohns treatment week 5



Ok.. so is this not totally katy ro? Who created this diva? She had a blast at a classmates princess party at the mall... where each little girl was treated like a princess. She got her hair done..nails and make up done...drank lemonade out of china tea cups and at cupcakes on there little thones. It was sooooo stinkin cute. I just remember being this girly... where'd she get it from??
So this is my 5th week since being diagnosed with Crohns disease. Since i've not been blogging much I'll update you. Lab results, biopsies and colonoscopy confirmed that I have the auto immune disease called crohns. Its a disease where my over active immune system attacks my digestive tract...causing serious inflammation, bleeding, ulcers and degeneration. The disease can also attack other areas.. in my case it is also attacking my joints in the form of swelling, pain and bruising...and my skin...in the form of plaque psoriasis. I know those who have followed me for the last year know that i've been doing my best to change my lifestyle...IE: exercise, eating habits...unknowing what what ailing me. There isn't a cure for this disease... the goal is to achieve remission thru treatments.. and keep a lifestyle that prevents flareups. The first treatment regimen for me has been highdose steriods. I have a love hate relationship with
prednisone... although I haven't had abdominal pain or problems since week 3 (praise the lord).. the side effects are not pretty. Some side effects I have been experiencing are ... mood swings, extreme night sweats, increased appetite, swelling of my face and feet, sleeplessness, palpitations, hot flashes...did I mention mood swings...dry skin...mood swings... and most recently i've noticed the skin on my feet is so paper thin that i have tear and stretch marks on the tops of them... freaky!! Anyway.. this is supposed to be my last week on the roids... I started 10mg of prednisone yesterday.. and Im disappointed that i've started to feel pain and swelling in my joints again. I've also started an oral medication called Lialda..which is supposed to take over the steroids.. but I don't think this is going to work since im feeling the flair up again.
The next step for me if the Liada doesn't control this.. remecade (IV infusions) or Humara (weekly self injections)... people.. I can't even put a contact in my eye without wincing. Anyone have experience with this please speak up.. I'd love to hear your feedback.


3 comments:

Becky said...

Love the princess pics - what fun! I know it seems awful to give yourself shots. My SIL has RA and has to do weekly injections and she just couldn't imagine doing it. It took her a few weeks to get past her thoughts and now it's just routine. Just make sure they are the springloaded injections and maybe have someone else give them to you for awhile! Let me know if I can help in any way (but I won't give you shots!).

Becky

Bundleboo MaMa said...

aw common.. you wont help me with the shots??!

Michele said...

Well, although I have no experience with Crohn's, I DO have plenty of experience with self injections. After 2 IUI's and 1 IVF, I am pretty good at giving myself injections, and I would be more than willing to do them for you, if you needed me to. We need to plan a lunch/coffee date for after the new year. For sure!