Tuesday, January 17, 2017

Broken Telephone

So, I spoke to my doctor at the clinic today and she said there must of been a communication breakdown somewhere along the way because she was under the impression that I only had red skin and not a huge purple bruise.
Im honestly not sure how that could be because I feel like I communicated clearly but Im not gonna say its impossible I mean people make mistakes all the time.
So, my doctor suggested I go in tomorrow for an Ultrasound and then we can move forward based on those results.
I find the whole situation stressful and I have been eating crackers and granola bars all day. I eat when I am stressed and the lack of control of how I am treated is really bringing up a lot of stress and anxiety for me.
Thank god for the support of Zane and my friends and family.
I hope everyone has a good support system but especially people with a chronic illness.

Monday, January 16, 2017

Clinic Disappointment

So, I woke up Sunday morning with a huge bruise on the left side of my abdomen.
It alarming because I don't remember doing anything to it its big its purple and black and its growing and swollen.
I traced the bruise and today is has grown outside the line and there is a lump.
So ok in my mind Im thinking, its hot its bruised theres a lump inside, this is a classic bleed. So I call my clinic this am and they say don't even bother to come in theres nothing we can do. I have a lot of problems with this. First of all, how can they diagnose something over the phone? Second of all, why is my opinion never factored in? Why don't they think like ok, they personally think its nothing but why would someone whose had this condition for 33 years bother to call us if she wasn't seriously concerned?
If I was a male factor 8 or 9 they would say infuse over the next couple of days and call us with an update.
But because I am rare I am told to just suck it up. Why don't I deserve peace of mind? Why don't I deserve proper care and investigation?
My clinic makes me feel over and over that I don't and that I am an inconvenience because I am a special case.
I am beyond frustrated right now. I went to my family doctor and she has ordered an ultrasound but I can't get in until Friday.
At the moment I am thinking I might just go into emergency tomorrow.
Of all the terrible aspects of Hemophilia I think fighting with your clinic is pretty close to the top.
Im gonna go for a stress nap in the middle of the day but Im hoping when I wake up I feel a bit better about the whole situation because right now I want to scream!