Decision Day

Hoping that they do the right thing and uphold the law.....

Update:   And, as of 9:15 AM CDT - they did.   Thank You!!!!!!!

Arrrgh!!!

Pardon the mess.  It was just my head exploding.   I wish I could slap her, but I'll be nice.  Here's hoping you never have a pre-existing condition (or two), you hateful f*ck-nozzle.   Oh, and don't choke on your chocolate cake.  It'd be a damn shame for you to end up in the ER.       Meh!!!

H/T Crooks and Liars:
http://crooksandliars.com/blue-texan/stupid-right-wing-tweets-dana-perino-ed#comments

ITP - Idiopatic Thrombocytopenic Purpura

The results from our daughter's tests are back.   She does not have cancer.   So, that is the good news.  

But, and there is always a "but'....    She has a rare blood disorder called ITP or idiopatic thrombocytopenic purpura.   Her platelet count is very low.   Normal platelet count is between 150K - 400K. Her's is 19K and will most likely not go above 50K.   For some reason, her immune system has decided that her platelets are a foreign invader and attacking them.    The oncologist wants to monitor her but there is no treatment.   If her count goes below 10K, then they'd tranfuse platelets.   Meanwhile, the oncologist advised her against "sky diving and knife throwing".   :-)    She needs to get a medical alert bracelet because she could bleed out rapidly if injured since her clotting ability is now limited.   What is amazing to me that with all the doctor visits, blood tests, trips to the ER, and hospitalizations, no one seems to have a record of her blood type (needed for the medical alert bracelet).

So, along with Crohn's, she now is now fighting this.    Fun stuff.....

My Daughter's Life: 8 Tubes and a "Beer Keg Tap"

(Photo:  Yes, they are going to fill those vials with her blood and use an IV to do it.   My daughter's words:  "Like tapping a keg.")


I haven't posted in a couple of weeks because my daughter has been very sick.   

She was diagnosed with Ulcerative Pan-Colitis in March of 2011, about six weeks before her 27th birthday.    She was ill for six months before they finally figured out what was wrong with her.   In the 15 months since that diagnosis, she's had three trips to the ER, a colonoscopy, a four day hospitalization, one almost-hospitalization, countless doctor appointments and visits with specialists, and begun IV Remicade along with the heaping double handfuls of oral medications she takes daily.   Along the way, she's had sinus and other viral infections, and a mild case of the flu (even with her flu shot), and ulcers in her throat that felt like strep.   Her gastro-enterologist now thinks she has Crohn's Disease because of ulcers in her mouth, throat, and eyes.   If we can get her healed up enough to do an endoscopy, that will confirm it.

Crohn's and UC are invisible but ugly, quality-of-life robbing diseases.    Food doesn't digest properly.   She's often anemic, undernourished, and underweight.  Fatigue is a big problem. She's covered with bruises.  Needle tracks in her arms from never-ending blood work, and IV's.    Words like 'anal ulcers' and '15 bloody bowel movements a day' are not things we like to visualize or talk about in public.   Most people have ever heard of these autoimmune diseases.   She can look and seem reasonably healthy, then be extremely ill and in the hospital a day later.  Simple things we take for granted like enjoying a good cup of coffee or diving into a pizza are pleasures she has to forgo since they make her innards go bonkers.   She is 20 times more likely to develop colon cancer.   Two-thirds to three-fourths of Crohn's and UC folks will have surgery to their digestive tract in their lifetimes.   Like I said.   Ugly.

Anyway....  She's been flaring (UC/Crohn's-ese for "guts on fire"), feverish, feeling bad, etc., for about two months now.   The real 'fun' started last Tuesday when her gastro-enterologist ordered her to the back clinic for a follow-up blood draw to the one she had Monday.   His words:   "Do this STAT, and I am not leaving the office until this is resolved."   He called her back in an ominous tone:  "Your platelet count is 19,000. "   (Normal is between 150K and 400K.)   "I've already made an appointment for you with an oncologist tomorrow because I am concerned about bone marrow issues like cancer.  Your insurance paperwork has been pushed through."

She called me, crying, with the news. 

I've heard the expression, "icy cold fear" before but had never actually experienced it.   Driving my child to see an oncologist is something I will never forget.

There is good news (we hope).  Her oncologist does not think that she has cancer although he is not 100% sure.   Blood tests will give a better idea as to what is going on.  The results are due back the middle of this week.   He thinks the low platelet count is related to her Crohn's and the Remicade.  We hope she does not have to give up Remicade since that has made her "feel halfway human" for the first time in two years.   However, it's expensive.  As in $10,000 a treatment expensive.   As in $10K every six weeks expensive.   And it has some nasty side effects including lymphoma and tuberculosis.  But, low platelet counts are fraught with peril, too.   Kidney problems, brain bleeds, etc.   Sometimes 'teh Google' is your friend, but not when you are researching what (else) could be wrong with your kid.  It can be overwhelming.  You really do have to stop and smell the roses (or drink wine in the back yard with your sweetie). 

Stay tuned.

I can say one thing with certainty, however.....

She's the strongest person I've ever met. 

(And, thank the goddesses for health insurance...!!!!)