Friday, April 17, 2015

Relationships and Chronic Illness

Last night, I was laying in bed following surgery, on pain medication, IV fluids running.  And my husband after working a 9 hour day and going to class for an hour and a half was running around getting the kids ready for and into bed.  And it occurred to me that he SO does not get what he signed on for.

9 years ago I got pregnant and we decided that it made more sense for me to stay home than to spend 85% of my salary on daycare.  This is not to open the working mom/stay at home mom debate, it's just the choice we made at that time.

We had two beautiful kids in 3 years.  And then I got diagnosed with masto.  And stuff changed.

I had been sick the whole time, but doctors kept telling me nothing was wrong, I was just depressed, if I lost 30 pounds I'd feel fine.  (If you've been down this road you have these horror stories) I found myself more and more easily exhausted, I had to take naps when the kids took naps.  I made less and less complicated dinners, my crockpot is my best friend.  And slowly the housework totally got away from me.

And it's been a long 4 years since then and this last year has been THE MOST sick I've ever been.  We're doing what we can to try to steer me back on track, but I am still sick.

A lot of days my husband comes home and makes dinner.  That makes me sad, because I'm supposed to be the homemaker.  Most weekends I spend at least Saturday in bed until noon or later.  My internal battery just wears down and I need a recharge.  But that means he gets up with the kids instead of sleeping in on his day off.  That makes me sad too.  If I stop and look at everything I've lost physically, socially, emotionally to this disease it's utterly overwhelming.

Chronic illness is a major risk factor for divorce   We try not to talk about this.  We don't want to face it.
I've watched three couples seperate this last year, in part if not mostly due to the wife's illness.

I cannot imagine the strain on my husband as he watches me fade from who I was to who this new person is.  And I hope that once my health is back on track I'm going to get to rediscover parts of who I am.  This last year has been one of incredible emotional growth for me.  While I'm sick, I'm content in my illness.  I have a lot of peace about being sick that I've never had before.  There are good things in this, and if I look I find them.  It's hard, and I'd trade it in about a second.  But I often overlook him.

He promised to love me in sickness and in health.  But neither of us knew that the "in sickness" part would come so soon or so fully into our marriage.  It's all consuming.  I have an IV pole in the bedroom, IV supplies all over my bench by the window.  Empty medicine bottles liter our bathroom counter, reminding me to call in refills.  We could probably fill a spare bedroom with all the gastrocrom capsules that I go through in a year; admittedly I'm bad at getting the end caps in the garbage and I know he picks them up because they make him nutty.  Now he has flush syringe caps that he's doing the same with. It's not that I don't make an effort, as I tell people who are amazed at my inability to do things like throw small pieces of plastic in a garbage can, try doing it when you can't feel your hands.

His workload has increased so much.  He works full time and went back to school to work on a Bachelor's of Mechanical Engineering.  Why?  Because it was what was best for our family.  Not because he really wanted to.  He wanted to stay home and play video games.  But he knew that if I can never work we need an income boost.

I'm quasi-uninsurable.  I have no life insurance, no long term care insurance.  I can get them, they're just ridiculously expensive and out of our reach.  I have a burial rider on his policy.  But I know it eats at him that if something goes wrong we'll be financially ruined.  If I do die, there is no money coming in to pay for daycare, a housekeeper, etc.  I'm just gone along with the services I do manage to provide to the family.

He is the most ridiculously supportive husband in the world.  I joke anyone else would have left me after the first half million in medical bills, but I kind of think it's true.  He is in this to the end.  He is the bringer of ice water and the fluffer of blankets and the finder of TV remotes.  He scratches my back and applies cromolyn when I cannot stop itching.  He is so patient with the "Hey I need to stop at the next bathroom." on car trips, he's held my hand through biopsies and test results.  And while this stuff is so hard, he's the one who has to watch the person he loves go through it.  And I have no idea what it's like on that side of this.

There's a great quote from one of our favorite shows, Firefly, "I'm not so afraid of losing something that I won't try having it."

Someday, we may wind up in the statistics pile, but we do everything we can to avoid that.  And I'm glad that he's not so afraid of losing me that he won't love me with abandon.

Tuesday, April 14, 2015

Well that was different

On Wednesday I woke up with THE.WORST.HEADACHE.EVER.

And I am no stranger to headaches/migraines my friends.  I had my first migraine at 12 and I've been on the roller coaster since.

Yeah, it's something like that.

But this was unreal.  I could not even move.  It was like a giant spike of pain straight through my eyeball into the back of my head.  Plus vomiting.  Plus diarrhea.  My life was awesome.

I sent my daughter to school.  I found someone to take my son.  I laid in my bed and tried not to move.  Because moving hurt.  And then I'd get up and poop and throw up in the garbage can while I pooped.  It was awesome.  And while I did that I'd go "Oh my gosh my head is literally going to explode.  My eye ball is going to pop out of my head somehow."  I took two imitrex.  Normally I only take HALF of one for a migraine.  I took two oxycodone.  NOTHING.  No relief.  I called my husband and told him he had to come home because I had to go to urgent care and get relpax and tordol.

Urgent care was a giant waste of time (and I'm sure they'll bill me $50).  I failed some neuro exam so they told me I had to go to the emergency room because I could be having a stroke.  Fab. (OH and they don't even HAVE relpax and tordol.... WHAT THE HELL ARE YOU THERE FOR URGENT CARE?) So I go to the Emergency room.  Which was SUPER crowded.  And I sat in the emergency room waiting room for an hour waiting for them to move people out of the emergency room to rooms upstairs so I could get a room in the emergency room.  Awesome.

The emergency room has two tracks.  Emergency and yellow line.  All the damned yellow line people were FREAKING NOISY AS HELL.  There was the crack head who was making herself cough and then making herself throw up and then the couple who came in complaining that they were vomiting and hadn't kept anything down in days but both had 62 ounce sodas and then the teenager with the cellphone he was talking loudly on.  I HATED ALL OF THEM.

I had to just sit there and wait while they all went to yellow line and I waited for an emergency room.  I finally got it and got to lay there in the dark for an hour before I got to see a doctor and they gave me drugs.  And then I had dilaudid and I no longer cared.  

They had to make sure I didn't have meningitis or a stroke or ... other things wrong with my brain.  I do have brain fog so I can't remember what the hell those things were.  So I got a CT scan and a lumbar puncture.  HOOOOOO-FREAKING-RAY.

And all the tests were normal so I got sent home feeling worse than I walked into the damned place.

And Thursday and Friday were spent trying to contain my 5 year old.  "Sure eat whatever you want, just don't bother me."  "Sure you can play your tablet for 3 hours, just let me sleep."  And I slept all day Saturday and I was finally able to stand up on Sunday without going "OH GOD MY HEAD!!!!"  (that's the censored version)  And it *STILL* hurts today.

What the hell is wrong with me?

I think it's ebolaria.  My brain is going to leak out my ear.

I'm hoping that the anesthesia on Thursday will reset me.  If not I'm not letting them send me home.  That's my grand master plan.  (Pretty good, right?)

Monday, April 6, 2015

Today I was supposed to see a neurologist!

April is my MONTH O' DOCTORS!!!  imagine that with some reverb (doctors octors tors rs).

It was supposed to kick off today with a trip to the Neurologist.  Except I have brain fog and for having logged into the online chart about 6 times in the last 3 weeks I never noticed that the Neurologist appointment is on ... May 6.  Fiiiiiiine!

So the next appointment is on the 9th, it's the consult to have my endometrial ablation done on the 16th, and then I have my pre-op at the hospital.  Hooooray!  Hoping that by no longer having ridiculous periods maybe we can put a halt on one source of the anemia?

The 22nd I have a colonoscopy.  I am in so much GI distress and pain lately that I don't even know what to do.  I avoid eating as long as possible, eat as little as possible and then am in pain for a long time afterward.  I kind of hope they find something BESIDES mast cells at this point.  Please find something you can fix!  Please!  I'm just tired of being in pain and feeling terrible.

Tuesday, March 31, 2015

The Unbreakable Kimmy Schmidt

There's a new series on Netflix.  "The Unbreakable Kimmy Schmidt".  If you're not watching it you should be!!

She says "You can survive anything for ten seconds.  And then you just start the next ten seconds."

This is my new motto on life.

And it's so true.

My life is hard right now.  Really hard.  But I can survive the next ten seconds.

Is your life hard right now?  Can you survive the next ten seconds?  Then we can get through this.

We need a secret code...

Okay IBDers, IBSers, MErs, we need a code.  We all need to start wearing brown shoe laces or something.  Seriously, there's nothing worse than a pooping standoff with me.  I'm not going to stop pooping because you're in the stall next to me.  And if you're going to wait for me to leave you could be there for HOOOOUUUURRRRRSSSS my friend.  HOURS!

Also.  This became FAR worse when the lady in the stall next to me came out and I was washing my hands at the sink and wearing my mask (BECAUSE OF THE AIR FRESHENERS!!)  Her face turned seven shades of purple.  I couldn't explain it was the air fresheners, it seemed like it would make it worse.

My life is like a bad episode of a sitcom.

Thursday, March 19, 2015

Sometimes I think I'm going to wake up and not be sick anymore

You know, through all of this, some days I still think I'm going to wake up and magically not be sick anymore.

Somehow, I'm just sure I'm going to wake up and not being a splotchy, spotty mess.

I'll wake up and feel like my intestines are normal again.  Like there AREN'T a family of rabid weasels living in there.  (Honestly though, replacing my guts with weasels might be an improvement.)

That I'll become a person for whom shoving a giant plastic tube through my arm doesn't seem like the best course of action.  Like, in what world is this is a normal thing?!

I'd love to be a person who doesn't spend half their income on medicine.  Who doesn't spend their Friday nights putting 161 pills in a pill organizer.  And that doesn't even include the "AS NEEDED" medications!!

I'd *LOVE* to stop being this person in public!!  And god help me if I forget the damned mask!  I'm in so much trouble!  I had a job interview on Monday and didn't put it in my "nice" purse.  I ran into a store after my interview and needed it.  INSTANT migraine.  So awesome.  Took me out of commission for the rest of the day.  Had to just lay in bed and hope for the best. 


I'm just tired of being sick.  Really tired.

I want to go to the bars with my girlfriends!  They don't invite me because they know I don't drink.  And I appreciate that, but at the same time I miss the invitations.  I just want to feel normal again.

Dear Masto,

Let's break up.

Please mail me back my stuff.  Like my dignity, and my sense of bodily autonomy.



Saturday, February 28, 2015

World 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.