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....?"


"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.


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.

Wednesday, November 5, 2014

Early November Update

We are pressed on all sides over here.  It has not been a good time for my family.  So here's the low down for us.

My daughter had surgery on her horribly ingrown toenail.  Removed the ingrown part and did a Winograd procedure which forms a little pocket of skin and prevents the nail from regrowing.  This was great.  My daughter's a dancer, both my husband and I suffered ingrown toenails, we were happy to go straight to the final solution.
Two days after surgery my daughter pulled her stitches out ruining the pocket of skin.  Which means that the nail can regrow and re-ingrow.  It's probably the angriest I've ever been in my parenting career thus far.  So we're expecting to have to repeat her surgery in the early part of the year.  This surgery got her to where she'll be able to dance Nutcracker and cleared out the infection.  But she screwed up the permanent solution.
My son had his 5 year check up yesterday (a little late, but eh).  He is being referred to Seattle Children's Hospital for a neurology evaluation.  They're concerned he may have Tourette's or some other form of tic disorder.  *AND* he was supposed to have been referred last year after his 4 year check up but the nurse dropped the ball!  I assumed the doc had decided the referral wasn't necessary and didn't pursue it.  Now I feel dumb.
He also had his flu mist and DTaP+Polio vaccines.  Which are great.  I'm a pro-vaccine type person so don't come tell me I'm a horrible person for vaccinating, thanks.  BUT he's having a vaccine reaction today.  So far it's within the range of what's normal for a vaccine reaction.  Fever, headache, loose stool.  But since he has the working diagnosis of a mast cell disorder it scares me.  I also know that DTP was a vaccine that I responded poorly to as a child, although I know it's been reformulated because of those problems.

I posted a while back about going to the doc and formally getting diagnosed with a rectocele (ugh).  Well then I went to a GYN to discuss surgery.  The GYN said "Nope, nothing wrong!  But if you want novasure we can do that!"  That GYN sucks.  So I finally decided I wasn't going to live with this any longer, I've known this is a problem since 2012 when I talked to my OB/GYN about it (he also said it wasn't a problem).  So I scheduled an appointment with a general surgeon.  He did an exam and said "A doctor said this wasn't a problem?  They're an idiot."  That makes me feel a little better.  Surgery is on the 17th.  Little nervous about that, please don't kill me with anesthesia.

AND I went and saw my new GI doctor.  Who is in the same office as my OLD GI doctor who I hated.  OLD GI doc told me that mastocytosis wasn't a real disease.  Anyway, new GI doc didn't tell me I had a fake disease.  But he told me all my vomitting and discomfort was probably functional dyspepsia, which basically means, sucks to be you, your stomach is going to hurt forever.  Endoscopy on 12/15, and he's trying to get my surgeon to do a colonoscopy while I'm already out.  We'll see.

So that's all the news that new over here.  I'm still in symptom hell.  I still react to everything I eat.  I've lost 25 pounds in about 7 weeks.  It's just, whatever.

Monday, October 20, 2014

Post-Appointment Hematology

Well, the hematology appointment was not as bad as it could have been.  It definitely could have been better.  But I'll take not as bad as it could have been.

The staff was all really kind, he was super nice.  The facility was, well it was standard cancer center.  Lots of super pithy "uplifting" comments on the walls.  Am I the only person in the world that doesn't find that stuff at all reassuring and just finds it grating?

Whatever, I'm bitter and jaded and cynical.  I accept that.

The thing I *DID* like about the building, is this sculpture as you walk in.

Seriously, how good is that?  I love it.  And it's so true.  It's so important to not let the crush outweigh the optimism.  And lately I've been letting the crush be the main focus.  It's been so hard with my current downturn and I hope that after I get back on solid ground that I'll be able to see the light again.  But right now I'm holding on to the fact that the light is there. 

Hematology went about as well as it could go.  The doctor seemed pretty competent.  He didn't have the best bedside manner, but I've found that with a lot with the higher level specialists.  He didn't try to tell me that I just had had IBS or that my diagnosis was wrong so I liked him more that a couple of other doctors that I've seen recently.

He wasn't willing to discuss my GI issues.  As he said "I'm not a GI doctor."  Yeah, I expected that.  But I floated the idea that I was reacting to the physical process of eating and he didn't balk at that, so at least I can say that my hematologist agreed with me when I go to the GI doctor on the 30th.

The hematologist was HORRIFIED by my thyroid dosage.  (I'm on 250 mcg right now)  Yeah.  It's a lot.  He said he'd like to see me on 12 mcg.  12.  Yeah that's not going to work.  He also thought that my taking iron and B6 and vitamin C was a bad idea.  He thought it could be contributing to some of my GI issues.  So instead he said "Let's do an Ferritin and B12 infusion.  You'll only need it once a year unless you have an underlying issue."  (Um.... yeah... I think I have an underlying issue, it's called Mastocytosis...)

He also said that he wanted me to stay off the Gabapentin, not because he thought it was causing the throat itching, he said that Gabapentin was safe he just wants me to not take so many medications.  Which would be great except being on Gabapentin means I don't take as much oxycodone.  He also said that Gabapentin wouldn't help my back pain, since it's "JUST for diabetic neuropathy."  Um.. but it helps.

So anyway the next Friday I had my Ferritin infusion AND I DIDN'T DIE!!!


So that's the tale of hematology.  I see the surgeon on the 25th and I see the GI doc on the 30th.

I have to take my daughter for a surgery consult today.  She's got an awful ingrown toenail that's got to be removed.  She's dancing in Nutcracker and can't have her toe like this any more.  And then she will have surgery on Friday.  Instead of the in office procedure like normal they're doing it at the hospital and will put her under.  Little nervous about that.  She's never shown any signs of having mast cell issues but since me and her brother have it it makes me a little more cautious. 

Tuesday, October 7, 2014

Hematology on Thursday

I got my pre-appointment paperwork. It's about 25 pages. Although they only gave me about 6 lines for medications. (HA!)

Totally looking forward to slogging through this.

Today I had my pre-appointment blood work done.  5 vials of blood gone.  Farewell blood!  Tryptase, CBC, CMP, thyroid and more iron studies.  Hey guess what?  My iron is still going to be in the crapper, I've only been on the iron supplement for like a month.

I am very anxious about this appointment.  I have no idea what this guy's qualifications are.  I have no idea if he knows anything about masto.  I mean he knew enough to run a tryptase so he's doing a little better than I was expecting.  I generally don't have a lot of hope for most doctors.  I mean generally I go in to the ER and say "I'm in anaphylaxis and have mastocytosis" and they say "What's wrong with your breasts?"  It's true and you know it!

So, specific prayer request for this appointment.  That he is out of the park smart about mastocytosis.  That he has been secretly studying it at night and on weekends.  He loves it and is passionate it about. ;)  (Hey a girl can dream right?)  That he will listen to my concerns and not write them off!  That he'll be willing to search out answers for things that are happening even if they don't neatly fit in the masto box.  I cannot keep living like this and I need a doctor who is willing to be an active participant in my care!

I don't know, I feel like it doesn't matter, because right now so much of my symptoms are GI focused so why am I even bothering to go to the hematologist.  But here I go.  And we'll see what happens.

Thursday, October 2, 2014

It's been a rough month

I got my mastocytosis diagnosis in 2011.  For the last 3 years I've been *FAIRLY* stable.  I've had some ups and downs with the GI stuff, the addition of dicyclomine and budesonide had helped that incredibly.  And then I've had the struggle with the degenerative disc disease, adding gabapentin about 5 months ago gave me a new lease on life, I was cutting back on my oxycodone and really felt like a new person.  I was walking, exercising, starting to see some weight loss, etc.

But my mast cells have decided to flip out and destroy my life.

In the middle of August I had the itchy throat thing crop up.  With no explanation.  Couldn't figure it out.  And that is still going on now.  My Primary care doc things it's the gabapentin causing it and has had me discontinue it; you would think if it was the gabapentin the itching would have stopped when I stopped taking it 3 weeks ago, right?  Now my pain level is through the roof again and I'm only medicating with oxycodone.  Not ideal for a mom who is trying to take care of two kiddos.  I cannot take oxycodone if I need to drive, or do... anything.

Primary doc ran blood work my iron levels came back super low, which they have been since my bone marrow biopsy in January.  Along with my thyroid being bottomed out again.  (DAMN YOU THYROID)  Started an iron supplement and kicked the thyroid up to 250 mcg a day.  He has no other ideas and tells me to wait for the hematology group to see me.  I've been waiting for them to schedule me since June.  JUNE.

Maybe this is how they process their appointments?

UPDATE - Hematology called me today (Friday) I have an appointment on Oct 9!!!  HOORAY

On September 23 I was out running errands and all of a sudden my legs were on FIRE.  They were burning so bad I seriously thought that I had to have spilled some sort of cleaning product on my legs somehow.  It was very reminiscent of the last time I used bleach in the laundry and accidentally got some on my hand.  I got home and took my jeans off and my legs were BRIGHT RED and covered in hives.  A cold shower, 4 benadryl, two atarax, and pouring cromolyn sodium on my legs finally calmed the reaction.  I figured it had to be something on my jeans, cat hair?  Food?  Who knew.  I washed them as normal and wore them the next day to the same result.  The only thing I can conclude is I'm allergic to the jeans or the friction from the jeans is causing the reaction.  So now jeans are out of my wardrobe.  That's awesome.

I did something I said I'd never do, bought leggings.  Because in addition to losing the ability to wear jeans, apparently I can't shave without setting off a cascading horror show of hives.  Thanks masto!

And the last week I've had the worst abdominal pain.  That's not that unusual for me, I've always had heavy GI symptoms.  I called the GI clinic and begged them to get me in, told them that I have a completely open schedule, can come in on any cancelation, etc.  They can see me October 30.  Awesome.  I've barely been eating because everything I eat causes the pain to get worse and makes me nauseated and then of course is followed by horrible diarrhea.  Buckets of fun. I've dropped 16 pounds since I saw my doctor in August.

I long ago lost the ability to take *HOT* showers and baths.  I was a person who loved to turn the tap on as hot as it would go and lay in their and boil.  I've been taking luke-warm showers for about a year now.  For the last two weeks I've been taking cold showers.  Because even the luke-warm showers were sending me into fits of itching so bad I was scratching bloody furrows into my skin.

I've lost the ability to use my "safe" shampoo and condition.  My safe soap.  I'm left with hypoallergenic baby shampoo for shampoo and soap.  I can't shave, running the razor over my skin is too much friction.  I need to go find a new deodorant, but I've been waiting for a "good" day because I know walking down the deodorant aisle even in my vogmask is going to be dicey.  Can't use my lotion.  It's been a great time recently.

In addition to the abdominal pain I've lost pretty much all my safe "go-to" foods.  Potatoes?  Gone.  Watermelon?  Gone.  Canteloupe?  Gone.  Heck, I reacted to a bottle of water on Sunday.  Yup, a bottle of water.  It wasn't even COLD.  I know that I've lost the ability to eat and drink anything super cold or super hot.  I had to ask a guy for a bottle of water that hadn't been in the cooler and I still reacted.   Made my lips and face go all buzzy and numb and my hands started swelling.  The heck is going on with my masto?  I have no idea, but it sucks.

I've been living in my new vogmask.  I bought a new one with a vent.  Best purchase ever.  Seriously, if you have chemical sensetivity and DON'T own a vogmask, get one.  You won't regret it.  I get funny looks but I don't care.  (Plus they're super cute.)

That's what is happening in my masto world.  Everything sucks but I'm trying to keep a positive attitude so that I don't get stressed out and make the mast cell degranulation worse.

The Aspirational Sick Person

I got a bug in my ear and wanted to discuss the "aspirational sick person" trope that's kind of hot right now.  Examples?  "The Fault in Our Stars" and Fox's new show "The Red Band Society".  (Fair disclaimer I have watchined "The Red Band Society" I have not read or watched "The Fault in Our Stars" working on the book now and then I'll watch the movie and report back more fully.)  The ASP, they have some horrible illness, but their lives are *AWESOME* their friends and families have pulled in close and are making their "last days" the best that they can be.

Fox's "Red Band Society"  the sick kids consist of a kid in a coma, two kids with osteosarcoma, a kid with cystic fibrosis, an anorexic and a kid in heart failure.

Let's talk about that, shall we?

The ASP, they're always very sick.  But not so sick that they can't go do the things that fulfill their life.  They take amazing trips.  In "The Fault in Our Stars" the two sick cancer kids take off to Amsterdam, the doctor even tells the parents "Oh she needs to live her life!"  Yup, she's just gotten out of the ICU, but she needs to "live her life".

This is clearly a girl who needs a transatlantic flight

I one day hope to travel the world, and I've gotten to take several trips over the last few years since my diagnosis.  I hope to do more travelling.  For me, that requires carrying several epi-pens, emergency meds and having a good idea of where the nearest ER is.  But I have had my doctor express doubt about travelling.  "Maybe now is a better time to stick close to home, where you're a known entity."  And "Maybe being in a plane isn't a great place to have anaphylaxis."  Hey cancer kids, maybe being in a plane isn't a great place to die?  Especially over the ocean?  I'm the only one that that thinks these things?  Okay.


The extravagant trips and "last wish" fulfillment.  While some kids have Make a Wish, most adults who get sick spend out savings and most of our income fighting our diseases.  Even if we have "good" insurance.  I spend $80 a month on medication co-pays, and that's just maintenance medications.  When I flare or get super sick we're looking at another $20-$40 on top of that, or more!  I'm looking at you freaking Zyvox.  Sure, some adults decide to charge up the credit cards, it's worth it to make those memories and what not.  But many of us feel that it's far more rational to stick close to home, pay our bills and not burden our family with large amounts of debt if we are to die.

Now, if I were to get a terminal time line, would I do everything in my power to take my kids to Disneyland or something, of course I would.  But that would require some begging, borrowing and stealing.  And it would be a limited trip.  Not the extravagant lifestyle that we often see the ASPs living in books, TV and movie.  "Well if I'm going to go out I'm going to go out in style" kind of attitude.  You've seen it, especially regarding teenage patients.  The parents spoil them, buy them extravagant gifts.  I'm sorry, if you have a severe illness the reality is that most if not all available funds are probably paying for the treatment, no money for electric guitars or couture dresses.

Everyone is super good looking, with no visible signs of their illness.  You never see anyone have to take medication.  IV lines?  Nope, no one in this hospital needs them!  Nasal cannulas?  Nope, not even the kid in the coma is intubated or on oxygen!  The anorexic in "The Red Band Society" is thin, but not on an NJ tube or TPN and just "doesn't eat", if you're dangerously anorexic enough to be in a hospital you're probably going to be on forced feeding.  If you're at the stage where you're at a healthy weight and just "not eating" you're off to a private recovery center.

Can we also discuss how huge hospital rooms are on these type of shows?  I mean, in "The Red Band Society" one of the characters has his bed turned diagonally in the room and then a full sized couch and another bed in the room.  And there's plenty of room to walk.  Far cry from the matchbox rooms that I've gotten to inhabit over my years.

This isn't even one of the bigger ones! 

There's also the issue of the ASP being "inspirational".  My life shouldn't be inspirational just because I'm sick.  Stella Young is a comedian and journalist who gave a TED talk back in April 2014 that went right along those lines.  It was entitled "I'm not your inspiration, thank you very much."  She says that when she was 15 her parents were approached by someone in the community who wanted to give her a community achievement award.  Her parents said "That's very nice, but she hasn't achieved anything."  Because excluding disability her life was very common.

Disability and illness does not make you exceptional.  And in fact, many of us with disabilities and chronic illness are very ordinary and living incredibly normal lives.  We are NOT aspirational.  It is not okay to aspire to live your life the way someone with chronic illness lives.  Trust me, YOU DO NOT WANT THIS.

It's also not okay to compare your life to ours and say "Well, compared to you my life is perfect."  Look, we all have our crap that we have to deal with it.  It's our crap.  There's a great saying that I picked up from some Lysa Terkeurst book:  "I am not equipped for what [s]he has, the good or the bad."  And that's the real truth.

Stella Young had this to say about the quote "The only disability is a bad attitude"  She said,  "No amount of smiling is ever going to turn a flight of stairs into a ramp."  Stella gets it.

Maysoon Zayid is a comic who has Cerebal Palsy.  She talks about disability in entertainment.  And she points out that disability is the most underrepresented minority in entertainment.  "If a woman in a wheelchair can't play Beyonce then Beyonce can't play a woman in a wheelchair."  She hopes that by changing the conversation on disability and presenting more positive images in the media and on the internet that we'll be able to change the way people with disabilities are talked about.

The pilot episode of Red Band Society ended with the quote "Everyone thinks that when you go to a hospital life stops.  But it's just the opposite, life starts."  For anyone who has spent any amount of time in the hospital knows how wrong this quote is.