January 25, 2012

Dr Appt Update (Auto Immune Disease Related)

Hey Peeps,
If you are my "in real life" friend let's keep the following between you and I for now, -k-
Much Love, Jen

Wow just writing that title is a bit draining.  I keep hoping and praying this whole thing will come to a close and be done or that I'll get some definitive answers about what my future looks like but alas I have not and it looks like I won't be any time soon, as is the nature of my...disease. (I'm coming to the realization that I have to start calling it that, I have a disease...)

Yesterday  Monday I had a check up with Dr. T (Hematologist Extraordinaire).  It had been two months since I'd seen him.  Two glorious months with out those damn darn steroids pulsing through me.  Two months of pretending life was hunky dory.  I really didn't think about my ITP much until a few days before my appointment, I started to get really anxious....unfortunately when this happens I tend to close off, I don't confide in people, I internalize.  It's just how I deal, more on that later.

Monday morning finally rolled around, I got up a little extra early to have some quiet with my thoughts and coffee.  I took my time showering, dressing and doing my hair/makeup.  That always makes me feel a little better, heaven knows why, but it does.  Then the morning went about it's usual routine: Liam happily rises requesting a clean diapie, a morning bottle, snuggles etc.  Before I knew it I was dropping him off with Nanna and heading back into town.  I treated myself to a Carmel latte with whip cream and headed to the hospital.  I had around an hour before my appointment so I carried along a magazine, my ipod touch and my cell phone (dead battery and all, of all the days I could have used the distraction of a text my charger was at work, oy). 

My blood draw was the least painful I've had yet, thank God for that!  I also think it helps that my poor arm has had time to rest and heal.  I was in and out of the lab in record time so I just headed over to the oncology office.  Upon signing in, with the receptionist who still remembers me by name (how awesome is she?) I was informed that my shiny new insurance is wonky crap....great, as if I wasn't anxious enough.  Then I over hear (because I was standing literally in front of the woman) that they have over booked my dr during my time, I should have said "I'm really sorry but I need to be on time so I can get to work." but didn't.  Thus I would end up waiting an hour to see my doctor.  Fun times.

After, what seemed like forever, I finally got to see Dr. T.  My numbers are again lower....looks like my ITP is likely chronic.  I had suspected and feared this for some time and now here it was staring me in the face. I swallowed hard and glanced to the side, as I always do when I don't want to discuss something.  I don't have to go back on the steroids yet but Dr T is predicting my ITP is here to stay.  Also I've lost five more pounds, I'm twelve pounds below my pre-pregnancy weight.  Dr. T wasn't concerned but clearly thought enough to bring it up in conversation.  *side note I'm not trying to loose weight, I need to start toning but cardio=therapy for me*  He also told me that my hemoglobin (red blood cells) are looking much healthier (after four months of taking 300% of the daily requirement of iron each day, yuck) but I'm to stay on the iron for at least 8 more months.  I can handle that.  Up on to the exam table for the physical.  Dr. T makes small talk, he's such a nice guy, it makes it so much easier to face these appointments.  We discuss the mass of snow we got and how both of us got stuck, luckily he has teenagers that could dig him out!  He tells me that even if my ITP is chronic that it's not unreasonable to want or try to have more children, this is reassuring to me.  In passing I mention I've been having shooting pains in my right breast, I figured it was just my hormones and he'd pass it off as I had....nope....he's concerned.  Eff.  I'm handed a "gown" for lack of a better word and asked to undress from the waist up, full breast exam to come.  Eff.  I hate these more than anything on the planet but if he's concerned I guess it's necessary.  He comes back in and checks my poor floppy breasts and arm pits for lumps and bumps.  Nothing. (I also had found nothing in my own self exams).  This is something more to keep an eye on.  He wants to see me back in 3 months.  Should I find any lumps/bumps have specific bruising or become concerned I'm to call and have blood work done.

I'm saddened that the time between my visits isn't extending more, from this I gather that he doesn't think my platelet numbers will stabilize but will continue to decrease, that in three months it will be important for me to be monitored.  My road with ITP will not be short, likely not easy.  I'm afraid, fearful of the next treatment options (they are $10,000/each), fearful of needing surgery.  I'm concerned about what my future looks like, if Liam will ever know a healthy mom.  Sure I can function right now, but will I always be able to? And to what capacity?

Adding to my worries and fears is the mess that has revealed it's self with my insurance.  Dr. T is listed as in network on my insurance's website BUT when he's office goes to bill them the insurance will only pay him as out of network.  After some investigation I've learned it's a mess with his tax id numbers (he can work out of either hospital in my town but works out of only one, while both hospitals are in network only the office at the other hospital is considered in network on my insurance).  The short end of it is that I may very well have to switch doctors.  No one would want to do this, you build a relationship with these doctors, when you find someone you trust and that is doing a great job...you don't want to just up and leave.  It's not looking good, I've fought hard, I've done all I can do...I've spoke to Dr. T's office and my insurance twice yesterday alone. I've made pleas and calls to my Human Resource person (a lot of good that's done me, sarcasm intended).  It's in God's hands but right now I'm so very worried.

Not only the stress the insurance mess but the overall stress of having this...disease...is getting to me.  I'm starting to worry about missing out on things I love, like hiking.  I was thinking the Saturday night about how excited I am to hike again, since I couldn't last summer....then I started to worry...what if my platelet numbers are really low again and I don't know it, and I fall and get hurt in the woods.....what if....  It wasn't pretty.  Please don't tell me not to go there, it's where my brain goes, and to some extent I do have to think about these things, I have to be realistic about what my future looks like.  I'm starting to see the weight of this on me, I need an outside person, a therapist to talk through all of this with.  I need someone who doesn't know me personally and it's emotionally attached, I need someone who won't just say "it's all going to be ok, don't worry."  Because I need more than hearing "don't worry"...I need someone to understand that I'm scared and help me walk through this.....I looked up the number for the free counseling my work offers.  I need to verify how much I can get at no cost because I'm sure it's not a lot and I will need more than the allotted amount.  Just one more thing I have to figure out how to navigate.

So, it may not be pretty but that is where I'm at right now.  V's been pretty great and thank God.  He's allowed me to get away to the gym more than usual, the other night he took care of Liam so I could get dinner with one of my incredible friends and tonight he's treating me to highlights.  He's been fairly understanding, as understanding as a guy can get....ya know they usually want to fix stuff, this can't be fixed....I just need to be heard and cry an ugly cry and he's allowed me that too.  V and I are far from perfect but he's pretty darn good to me, I need to be more thankful for what I've got because I have more than a lot of people.....

1 comment:

  1. Ugh. I am so sorry. I really hope all your work pays off and you are able to stay wity your Doctor :/