Saturday, February 28, 2015

World Rare Disease Day





                                   
                       

IT'S RARE DISEASE DAY!!!!


Today's our day folks!!  Enjoy it!











What does it mean to have a rare disease?

For me it meant 7 years, 9 specialists, 19 ER visits, 5 misdiagnoses, and being told I was "just depressed" before finally chancing into my diagnosis.

It means tremendous medical bills.  "I've hit my deductible in February? AWESOME!  BOOK ALL THE PROCEDURES!"
AND you're going to wind up fundraising for research on your disease.  If there's even research being done on your disease.  I'm really happy for the ALS foundation, the ice bucket challenge was amazing, and they are going to be able to do so much with that money.  But look at Cure Sanfillipo, they have the cure, they just don't have the money to do the clinical trial.  Juvenile Huntington's is closing on some real promising research too, again no money to do the trials.  Niemann Pick C had parents that wound up finding a promising treatment, and now the NIH is finally starting a trial to see if they can recreate the results.  For Masto, The Mastocytosis Society provides grants for our research, the money comes, in part, from the mastocytosis patients themselves!!  It's a very weird thing to be in a place where I pay for my treatment and directly for my research!!
It often means that you know WAY more about your disease than your doctor.  Which can result in you effectively treating yourself off what you've read on the internet.  "So my internet friend Sue's doctor is doing...."  (Yeah, that's kind of why I have a PICC line now, but it's working.)

It means that some of your friends are going to get SUPER burnt out on hearing about your disease.  But others are going to be SUPER compassionate towards you.  Figure out which friends are which quickly.  Know which friends to say "Oh I'm putting along"  and which friends can hear the rant about how incompetent your last ER doc was. 

It means your family is along for a hell of a ride that they did NOT sign up for.  And sadly, divorce is really *REALLY* high in couples who have chronic illness.  Especially if it's the wife that's sick.  This does not mean your marriage is doomed to fail if you've just been diagnosed.  But be aware of putting your spouse in a caretaker position and try to do it as little as you can.  Obviously I'm not telling you to "bootstrap it up".  I joke with my husband that anyone else would have "noped it on out" after the first half million in medical bills.  I'm really lucky that he has a good sense of humor about my disease and that we can seperate ourselves from it as much as possible.

If you have kids, they're going to struggle with it.  We've had lots of conversations about how Mastocytosis is not fatal.  I've also shown my kids how to use my epi-pens on me.  This gives them some small sense of control.  I've also shown them where I keep my emergency protocols and they know how to call 911.  There's a lot of mixed information on whether you should hide your disease or just be up front with your kids.  I'm obviously up front with mine.  I'm a stay at home mom, they're confronted with my reality of not always being at my best, there was no point in hiding it.


My daughter and I write back and forth in a journal to each other, this was her entry to me this week.  I know that having a mom with this illness is hard on her.  I also know that it has cultivated a spirit of amazing compassion and generosity in her that I admire greatly. 

You're going to have people who think you're exaggerating.  Or faking.  Or have Munchausen's.  Or a conversion disorder.  Cut those people out of your life.  You do not have the time for them.  I am not joking.  Do not give them the time of day.  They are toxic.  You have limited time and energy to deal with things, and dealing with that kind of negativity is ridiculous.  

You are going to hear every ridiculous folk remedy, home remedy, multi-level marketing scheme and miracle cure that has ever existed forever.  Smile and nod.  Tell them you'll discuss it with your doctors.  Then go home and write snarky blog posts... Oh wait, that's just me. ;)

And it means you're going to find a community that you instantly belong to.  Even if you are the only one identified with your disease you belong to the greater rare disease community.  You are part of the battle.  We are all in this together.  We will find cures, we will advance research.  Even if it seems so far fetched today.  Alone we are rare, together we are strong. 


 

Both Richland and Kennewick Washington declared today Rare Disease Day.  We don't get free cake or anything, but it's a nice gesture.

Friday, February 27, 2015

A week into hydration

 How's the PICC line you ask?

Look it's purple!  How cute!!
We're a week in.  Fluid every night, which is awesome.  A great reason to put my kids to bed and watch TV for an hour ;)



This is all hooked up to the line after the first dressing change, looks less goopy.
So the major concerns were the nausea and vomiting.  I'm still queasy.  But I'm not throwing up like I had been.  Which is pretty much a slam dunk for this.

As my GI doctor put it, low risk possibility of high reward.  #Win!

Now to convince my hematologist to go to bat on the xolair.  I've hit my deductible!  It'd be free!

(Also, achievement unlocked, hit deductible in February!)

Friday, February 20, 2015

PICCs and Portland!

I got my PICC line today.  No pictures because I'm too lazy to find my phone and get it uploaded.

I also got my home nursing supplies.  YAY.  No bedroom is complete without an IV pole, right?  =/

The NW Masto Group is having a meeting in Portland on Sunday the 22nd.  I AM GOING TO BE THERE!!!  If you're going to be there please come say hi to me!  I'm so excited!!  Yay!  Community!

Saturday, February 7, 2015

Xolair and Mastocytosis

New study says that Xolair is an effective treatment for systemic mastocytosis.  Especially if the mastocytosis is resistant to other treatments.

http://www.ncbi.nlm.nih.gov/pubmed/21422688

Hey, guess who has mastocytosis that's got symptoms resistant to other treatments?

THIS GAL!




Guess whose insurance is NEVER EVER EVER EVER EVER going to pay for xolair?


Yeah, this gal.

It's fine... I'll be over here in pain, flushing, itching, vomiting, etc. etc. Really, it's cool

Wednesday, January 28, 2015

Healthcare costs!!!!

Okay, I try to not complain about this one, I know I'm lucky to have a husband with good insurance.  BUT...

I just got my bill for my surgery; okay I just opened my bill for my surgery, I'm not good at being an adult.

$18,000!!!!  THE HECK!

And most of that is covered, the part that isn't is still prohibitive and scary.  I'm going to wind up putting it on a $20 a month payment plan until I get a job.  But seriously?!  $18,000?  For a tiny surgery?  YIKES!!


This is what it took to get me through 2014, less 30 boxes of Cromolyn.

And then there's the prescription drug expenses!  YIKES!!  I'm lucky that I've managed to get off all brand and formularies.  Thank goodness Cromolyn went to generic a couple years back, that $150 a month co-pay was killer.  But my insurance still pays $3700/90 days for my cromolyn.  This is for a GENERIC drug!  That's ridiculous!

I can't wait to find out how this PICC line/hydration therapy thing is going to go down.  I kind of expect my insurance to just tell me no.  


I'm tired of being broke paying for medical bills.

Tuesday, January 27, 2015

GI appointment

I called my GI doc today

"Hi, I need to make a follow up appointment with my GI guy, I was supposed to have called like 3 weeks ago to schedule it for this week but I have phone anxiety."

"Well, I can get you in.... today at 4:15.... or Feb. 17 at 10."

"I'll be there today with a million kids!"


I'm watching a friend's two children this week before and after school since she started a new job.  So they got to come along with me.  Luckily for me their mom has Crohn's so they know the drill.

At my last GI appointment, on 12/31 I was the last appointment of the day.  My GI doc walked in
"Hey!  It's my last appointment of the year!"  to which I responded "Oh good, you saved the doozy for last."

I asked him to put me on a PICC line and TPN or an NJ tube and elemental formula.  Because I *CANNOT* live like this any longer.

He said that he couldn't in good conscience put a healthy person on TPN.  That he wanted time to do some research before he made a decision on the NJ tube.

So today was the follow up to that.

"Okay so I've done a ton of reading on this mast cell stuff.  The first step is H2 blockers, which you're on and no human should be on more of.  The second step is mast cell stabilizers, which you're on and as far as I can tell it's an appropriate amount.  Step three is steroids which you've got covered with the enterocort and I can increase that dose but you're going to gain a ton of weight.  And the next step is....?"

"Chemo...?"

"Yeah I don't look at you and think you look like someone I should put on chemo.  But at the same time I'm so not comfortable with sticking an NJ tube down your throat either."

I explained that the disability system had failed me, that I was too healthy to get disability but I'm way too sick to work and I have to go to work and we have to find something.  So I floated the idea of a PICC and hydration therapy.

"Sure.  I can sign off on that.  That seems reasonable.  At least with you I'm not real worried that you're leaving with a PICC to go do illicit things."

So, sometime in the next week or so I should have a PICC line.  And we'll see if hydration helps any.  I really *REALLY* hope it does.  Because I cannot be this sick anymore.  I have to be able to function.

Utterly Overwhelmed

I'm over this disease y'all.
I'm moving into a bubble and being done with it.

I'm over taking medications.
And paying for medications.
And medications not FREAKING WORKING.
And being prescribed new medications because of new symptoms.

*sigh*

I'm tired of doctors refusing to talk to each other.
And doctors who won't do research.
And doctors who won't listen to me.

I'm the one trapped in this stupid body that won't work.  But ya know, as long as those lab values are sort of barely scrapping by it's good.  Who cares if I feel terrible, have no energy, can't leave the bathroom, bruise if someone looks at me funny, right?  It's all about the almighty lab value.

Back in ... sometime when I saw the new hematologist my iron had tanked.  (sorry no online lab values so no exact values)  My hematocrit and all other lab values around iron were wonky. Oral iron and B6 had not caused a substantial increase.  So he had me do a "yearly" ferritin infusion.  Well that was 3 months ago and my iron is just barely at the low end of normal.  I still bruise like crazy and have no energy.  AND now my potassium has gone into the gutter.

Am I the only one who connects the dots between HUGE increase in GI symptomology and tanking chemicals/minerals in my blood work?  Like, really?  But no, don't do anything about it, just give me some potassium pills.  Cool.

And seriously don't tell me I need to go to Portland/Seattle/Boston/Massachusetts to see docs unless you're paying for my travel and bills.  I know my medical team here isn't up to this task at this point.  But sadly they're who I get for now.