On My Auto Immune Disease...An Update

Yesterday I had another appointment with Dr. T.  Or so I thought... I arrived at the lab a few minutes early for my blood work, there was no order, I walked over to Dr. T's office to get one only to learn my appointment was mysteriously canceled.  I sat around while a couple woman ran around trying to figure it out, we all know by now I get anxious about my appointments...this didn't help but in similar situations I always tell myself "we are all just humans, mistakes happen, as long as it can be resolved then no harm no foul."   Orders in hand I headed to the lab to wait an hour.  Thankfully I managed to be-friend one of the receptionists, she noticed I'd been waiting forever (45 minutes) and went back to tell them I am a oncology patient and need my blood work done now so I could make my appointment.  While I do not have cancer I am seen in the oncology department so I was ok with this and it meant I got in and out.  Back over to Dr. T's waiting room I went.  While I was waiting the practice administrator came out to introduce herself to me, she was so helpful while I was battling insurance, it was so sweet that she wanted to meet me and congratulate me on winning! It was just another few minutes before I was on my way back to an exam room.  As usual I was weighed, I've managed to maintain my weight for the last 4 months, I'm currently 14lbs below my per-pregnancy weight! Thank you My Fitness Pal! (it's free, sign up, message me and we can buddy up!)

Before I knew it Dr T came in.  I'm so thankful I get to stay in his care, even though my appointment was mysteriously canceled he took his time to talk to me about different things...like the fact that about 50% of the time when ITP is discovered and there is another associated disease existing and my fears.  I was so freakishly nervous.  Since 6 months have passed Dr T. is no longer concerned about associated diseases, he thinks I just have a idiopathic chronic case of ITP that will be intermittent for the rest of my life.  This is good news, the other associated diseases are scary....so scary (message me if you have specific questions, I'd be happy to discuss those).  He even said "I don't want to cause you to worry more by telling you this"... I reassured him I prefer the education....I'll worry anyway.  He also said I really shouldn't worry about having more children, that if I do get pregnant and my ITP worsens during my pregnancy I can do the IV treatments (this is an 8 hour treatment, in the hospital! Yikes!). I would be unable to do steroids while pregnant.  I'm still petrified of having another child.  He reassured me that he doesn't think I will ever have normal platelet numbers but I don't need them to be normal to be ok (normal is over 150k), as long as I can stay around or above 80k I can live a normal life full of the activities I love.  My numbers weren't available so I headed back to work (two hours late) and he said he'd call me.

I went to a movie with my dearest friend E. at 7pm thinking I wouldn't hear from Dr T until the next day.  Nope, I missed his call twice around 8pm.  He called me again at 9pm and again took time to talk to me.  He mentioned that I was more nervous than ever before.  He again took time to talk to me about how "this is not a death sentence, it's just annoying....you are doing very well and I expect your recurrences to be spread out over years not months".  My platelet numbers have continued to lower about 20% to 90k.  He reminded me of what to watch for and reminded me I don't need an appointment to have my blood checked, to just call him and I could go over on my lunch and be checked, he would call me.  I'm just so thankful for him, he gets me....he doesn't just brush off that "I over think this whole thing" (my words).  I have another appointment in August. (Side note, I'm no longer anemic! Yay!  I still have to stay on Iron for 3 month but that is fine.)

So it is good news, I'll probably need treatment again in the fall.  It will probably be steroids...while the side effects are rough...I prefer them because the thought of the IV treatment terrifies me (did I mention they are $10k a pop?).

I know I say it all too often but I'm really going to work on looking at the big picture and stop worrying about the little stuff.  I can't plan and control everything, or really much at all.  At the end of the day I still have a pretty great life, sure a few things could be different and better but over all I'm pretty darn blessed.


Other related posts:
My Diagnosis with ITP
What is ITP?

Much Love,
Jen

Intentionally Untitled

Hmmm well this won't be a ray of sunshine post, sorry.  Right now I have so much bouncing around in my head it's hard to even focus.  I have another appointment with the hematologist today, in two hours actually.  I could have a wide variety of people go with me but I'm choosing to go alone and I'm not sure why.  Perhaps the back of my mind hopes that I just won't need anyone, that I'll get good news...

My medication is not cool.  It makes me feel old...I'm so tired, achy and anxious.  I'm afraid to tell Dr T it makes me anxious, I don't want yet another pill to take right now. I feel like I take a handful every morning as it is.  Doesn't matter if it helps, please God let it be helping.  I found more bruises again this morning, they pop up suddenly in strange places, places you would remember hitting that hard. I feel like I should wear long sleeves and pants 24/7 so no one even sees the light ones that spot most of my body.

Only time will tell I suppose.  The worst part about all this is Dr T can't tell what symptoms are what since I just had a baby.  Rapid weight loss, hair falling out, exhaustion etc it could all go either way (except the bruises and extremely low platelet count).  Sigh.  I just try to keep reminding myself God saw this coming, and he's got it all under control.  It's all going to be just fine because it has to be.