Thursday, September 18, 2014

Mastocystic Enterocolitis and FODMAP

I am *NOT* in Rochester at the TMS Conference this weekend.  It is freaking killing me and I am *SO* beyond jealous.  But I am active on the TMS facebook page and so I've been able to see some of the slides so far.

One of the most interesting slides that pops up on the feed this morning?  I believe it was from Dr. Hamilton's presentation (it would make the most sense to be from him) on the FODMAP diet.

I had just YESTERDAY been discussing FODMAP with some Crohn's folks on Reddit.  And was considering if FODMAP could work for me.  FODMAP is used for IBS/IBD and Crohn's patients.

I had a terrible night last night.  I was horribly itchy, I was scratching bloody welts into my legs and arms.  Took a cold shower, didn't help.  Took 3 benadryl and an atarax, didn't help fast enough.  Was rubbing cromolyn into my skin, didn't help.  Then had horrible stomach cramps and bloating, nausea and diarrhea.  Gosh I love this disease!  And the worst part is, I have *NO IDEA* what triggered the attack.  None.  It could have been anything, nothing, everything.

I woke up this morning and was seriously considering whether to call my doctor and ask him to put me on TPN because I am literally scared to eat at this point.

But I suppose doing 6-8 weeks on FODMAP seems, slightly/very, more rational than going on IV nutrition so I'm going to give that a go first.  I will cry and pout about it because it says that garlic and onions are ABSOLUTE no-nos, but I'll give it a go.

I am tired of feeling so sick.  I am just done being so exhausted.  I'm over having to get up and go to the bathroom 4-8 times at night.  I just can't keep doing this like this anymore.

Wednesday, September 17, 2014

This is my pity party post.

Having a rough time right now, the reality of what some of my recent stuff may mean has kind of hit me.  I have tried really hard to be the "good" sick person.  To not complain too much.  To have the good attitude.  To always say "Oh I'm okay" when people ask how I am.  Etc.  

But the reality is I'm not okay right now.  I'm really, really sick.  This is the first time in a long time that I've felt like this disease is winning.  It doesn't matter what I eat I feel horrible.  I'm on forums looking up elemental feeding options.  Considering asking GI doctors about TPN options.  I mean, clearly that's not someone doing well.  I sit in the bathroom and just cry.  Because I'm in so much pain.  

I could sleep 18 hours, wake up to use the bathroom and go back to bed for another 6.  I have no energy right now.  It takes all my energy to just get up and take a shower and get dressed.  I feel like I am failing.  My husband is in school and working and then he comes home where I've done crap all and he's like "Great, I have home work but the kids have trashed the house and you haven't done anything." I know it.  I know I'm supposed to be doing it.  And I can't.

I'm just exhausted, tired of being sick.  And not sure what to do at this point.  I was talking to a friend last night, and he's one of the only people that I get super "real" with about this disease.  I mean how many people can you text "OMG I can't stop pooping!"  (How many of you are thinking "Gosh I'm glad I'm not that close with you now!")  I was running through some of the possible options, as far as I see them at this point, and he said "I'm always amazed at how well you take everything, you really are an inspiration". I want to be an inspiration, I want to be strong in this.  But at the same time.  OH MY GOSH THIS SUCKS SO MUCH.  I want to just cry and scream and not leave my room.

For those not in the know, do not go searching other Tim Minchin videos in hopes of finding uplifting, spiritual songs. There were other versions of this song but his version spoke to me today.

If you have a good sense of humor, being a mother of a ginger, I'm a big fan of his song Prejudice

I like his song Canvas Bags

All of his stuff is pretty funny but some of it gets pretty raunchy pretty quickly, so if littles are around, hit the headphones ;)

Thursday, September 11, 2014

My oldest kid is off to a new school this year.  Which is super exciting for her.  We had some difficulties last year, and we knew we had to do *SOMETHING* because leaving her in the mainstream classroom was going to result in her being frustrated and bored with school.  So far we're thrilled with her new school.  She's got a great teacher, she's making new friends, heck they've even got a bus route for her so I'm not driving 15 minutes each way.

But I'm freaking allergic to her school!!  Because it's all new construction.  With new paint.  And filled with new carpet, and new books, and new computers. 

Tonight was PTO/ATP kick off.  So off I went to do my part.  (And in part to put in my say in the beginning and make sure it didn't become a super clique full of high school drama like the last school!)  And I wore my  vog mask, which meant that no one wanted to sit near me and talk to me and I scared all the small children.  

(Not tonight, this was taken during the summer, but yeah, I look like a crazy person)

But after sitting in the cafeteria for 40 minutes tonight, I left out of there flushed and head-achey and with buzzing hands and face.  LOVE IT!  


The best part is, that I know that by the end of the year, when the building is all off-gassed and safe for me I get to do this ALL OVER AGAIN because my little guy goes off to the new Kindergarten center they're building.  Hooray!

Things you don't even think about normally, your kids' school buildings being safe to sit in.

Wednesday, September 10, 2014

Itchy throat, Iron and Death

So I posted about my weird bout with anaphylaxis, or at least what I thought could possibly be anaphylaxis.  I took my 5 day course of steroids and my throat just kept itching.  And itching.  And itching.  Nothing was helping it.  I went and saw my primary care doctor and he said that it was possible that my kidneys or liver were having issues since either of those can cause itching.  He wanted to run liver and kidney panels and if both of those came back normal he wanted me to do a 2 week trial where I went off the gabapentin, since gabapentin can cause itching!

Well, blood work came back and liver and kidneys are fine, but my iron and thyroid is in the tank.  Not super surprised about the thyroid, that keeps happening.  Now, back on my bone marrow biopsy from January there are a bunch of whacky lab values around the iron including "sustainable iron decreased" and "only rare iron granules seen within erythroid precursors".  What does that mean?  No idea.  And I'm probably not going to know until I go see the local hem/onc group.  I mean, the hematologist who did my bone marrow biopsy didn't even CALL ME about the whacky lab values on my bone marrow biopsy I had to call and get the results sent to me to find them.  Current plan is to take an iron supplement for the next three months and then retest.

One of the possibilities from my oh so super informed googling is microcytic anemia or a myelodysplatic syndrome.  I promised my husband that I wouldn't do anymore googling because I just upset myself, I totally admit I lean toward the catastrophic.  But, there is something weird going on in my blood.  Hopefully we'll figure it out soon.

I lost a close friend last week.  Which has hit me really hard.  He and I had kind of drifted apart over the last couple of years, but I still cared for him deeply.  And the fact that I will never again get a little text message or facebook message from him is deeply distressing.  He was found unresponsive on Saturday the 30th, had surgery for a blood clot, and the blood clot was declared unrecoverable on Monday.  He was able to donate his organs and passed away on Wednesday the 4th around 4 pm.  And I'm just at a loss on this one.  I feel like I should have some way to put this all in context, or some way to wrap it all together.  But I don't.  This just hurts.  I've finally gotten it under control to where I'm no longer just bursting into tears randomly (thank goodness) but he was a great friend and is going to be deeply missed. 

Thursday, August 14, 2014

So I'm pretty sure I've been in anaphylaxis for a week

           As always this blog post comes with a "Don't do as Drea does, Drea is dumb warning. Drea treats her Mast Cell Disease dumbly.  Talk to your doctor about proper treatment for your Mast Cell Disease.  If you follow Drea's path Drea holds no responsibility in the event of serious injury, death or property damage.Seriously, don't do the stuff I do, I'm a trained professional.  Or not.

Last weekend I suddenly got this horrible itchy throat.  And at first I thought it was anaphylaxis and I rolled through the options.  Do I epi and go to the ER?  Do I epi and stay home? Do I not epi and just take oral anti-histamines?

Then I decided that I wasn't in anaphylaxis, that I was sick, my voice got super low which I've never had before with anaphylaxis, but has definitely happened with strep.  I took a bunch of day-quil that didn't do anything and ate some ice cream, which also, didn't do anything.  And it didn't really get better.

And today I came to the conclusion that I was ACTIVELY in anaphylaxis and I couldn't really breathe and maybe I should do something about it.  I texted everyone I could think of to take my kids, and no one could.  (Some for good reasons and some for not so good reasons, but I'm not bitter... really, it wasn't like it was a life or death situation... oh wait.)  So I went and got a couple redbox movies for the kids and came home and took four benadryl and two atarax.

Suddenly I could breathe.  My throat didn't itch, at all!

It was a Christmas miracle!

I laid in bed mostly unable to move (Wreck It Ralph is cute, who knew).  Luckily I had a standing prescription for steroids, so I didn't even need to call my doctor for those.  I do need to go see someone about the whole "I have no idea what set off a week long low-grade anaphylactic event" thing.  That'd be good to have some answers about.  

Wednesday, August 13, 2014


In light of Robin Williams' suicide I would like to write a post about depression, and mine and my family's struggle with depression.

But at the very opening of that I want to share what I consider to be the most important piece of information when discussing suicide.

If you or someone you love is suicidal or talking about suicide please give them the national suicide prevention hotline number.  Please.

I have read a few too many blog posts on Williams' suicide this week, and they have run the gamut from "Depression is a spiritual problem" to "He's selfish, he had everything and he should have thought of his children" to "Now he's in Hell.".  Really, I should have known better than to read anything.

1 in 10 Americans suffer from depression.  And over 80% of people that are suffering from symptoms of clinical depression are receiving *ZERO* treatment.

In 1999 my father completed suicide.

My sister and I with my father in ~1984

My sister and me and my dad ~1994

My dad, date unknown

I will never know why my dad chose to kill himself.  But for some reason in early June he rented a vehicle and drove to Montana.  And in a rest area he shot himself. 

And I am grateful that unlike Zelda Williams I did not have round the clock media coverage of my father's suicide or helicopters over my family's home.  That we had relative privacy in our grief. 

Several weeks after we were informed of his death we drove across the state for a memorial service with my father's coworkers and friends.  Where, someone, who however well meaning, stood up and looked at the grief-stricken daughters of the decedent and started a hell-fire and brimstone sermon that ended with "I hope that he made peace with his decision because he's made his choices and is in hell now."  Because that's the proper thing to say at a memorial service, right?  Of course. 

I was not really a Christian at that time.  I was attending church with my mother and sister.  And I think they were both Christians.  But I really hadn't found God.  And for this man to stand up and say this at my father's service was so upsetting that it would really set me off God for years.  This was such a hateful thing, that even now it makes me tear up.  I think he was trying to "save" the rest of us, but I honestly can't imagine doing something so callous to someone else.

But that is exactly what has happened to Zelda Williams today.  People ran her off Twitter today with fake pictures of her father's corpse and telling her that her father was in hell.  And as horrible as that was, I was not surprised.  How awful is that?  As I said, I am grateful that I didn't have my father's suicide broadcast for public consumption.

Today I emailed Zelda, I'm sure she won't read it, but I felt the need to reach out to her.  As someone who has sadly been in her position I wanted to give her a few words of wisdom.  I wanted to tell her what I wanted to hear in those early moments.
So, here are a few of the things that I wish someone would have told me in the days following my father's death.
  • This absolutely sucks. It sucks in a way that nothing has ever sucked before, and nothing will ever suck again.
  • Take 10 minutes each day to absolutely fall apart. To do the absolutely ugliest crying that you can and to not feel like you have to "be strong" or "be brave" for anyone.
  • Write a journal during this time, even if that's not something you normally do. It will help to have it to turn back to during later times.
  • Your father loved you. And there was absolutely nothing you could have said or done to have changed this. And depression is a son of a bitch that steals loving parents, loving siblings, loving spouses and takes away their ability to see the hope.

It's cliched, but it gets better. And worse. And different.
 As I've stated, I have depression.  I've received several diagnoses, I had post partum depression after the birth of my daughter.  I've been told that I have major depressive disorder.  I've been told I have bipolar disorder and just not had any manic highs (that would be due to my sister's bi-polar disorder), I've been told I've just had depressive episodes and I've been told I have depression secondary to a chronic illness.  Whatever it is, it's hard to shake.  I have depression.

This was my senior prom, at the height of my depression, despite my *very* recent experiences with suicide I left the prom and considered killing myself.  I don't know why I didn't, probably because I loved my mom and my sister.  I'm grateful I didn't.  But I was in so much pain, and I didn't know how to keep going with how much I hated myself and how hard life was.

I went to therapy, I upped my dose of paxil, and later I went off paxil, which was a horrible experience, paxil is an awful drug, but it kept me from killing myself, so that's a bonus.

And now it's FIFTEEN YEARS LATER and I have a husband and two children.  And while I'm still depressed I am living.  I have this rare illness but I'm living.  I'm advocating for changes in health care and insurance.  I'm doing things that I couldn't have imagined 15 years ago.  My life is amazingly beautiful but it's also horribly hard.  And I wouldn't change a moment of it. 

I also understand how hard those deep dark moments of depression are.  And how black it can seem.  And how there really is no hope that can get in.  In those moments, the littlest things can make an amazing difference.  Or nothing.  I can't tell you for sure why I didn't kill myself, there wasn't one *AH HA!* moment.  But just a general "you know what, fuck it, I am not going out like this" turn.

I still have depression I have a hard time motivating myself to do things.  I have poor self esteem.  I would much rather just hang out at home than go out and interact with people.  I've been on anti-depressants for 13 of the last 15 years, and I'm pretty sure that I'm not going to get off them any time soon.  (Actually need to talk to the doctor about increasing the dose or adding a new med, need to remember that.)

I've also been a Christian, who has been guilt-ed for my depression.  (And this is not only an issue in Christian circles, this happens in a lot of religions and occasionally in non-religious circles)  I have been told that I have just not prayed enough.  That I haven't had enough FAIIIIIIIITTTTTH!  Sister!  Preach it!  I've tried to give up my anti-depressants cold turkey.  And ended up back at square one, crying on a bathroom floor with a razor blade.  Because while I have not seriously attempted suicide I was a self-injurer for a good dozen years.  And I resent the Christian movement for that.  I resent anyone who thinks that a malady of the mind can be healed by praying.

In my, never humble, opinion if your ONLY treatment of cancer or a broken limb or appendicitis wouldn't be to pray, or pray more or darnit dig deep and attend some more church, then do not hand out those words to someone suffering from depression, or anxiety or any other mental illness.  Because the mind is just as important as the body.  And the suffering of the mind is just as important as the suffering of the body.  We don't look on a broken limb as a personal or spiritual weakness.  And I truly hope that someday we will advance the conversation to the point that we will stop looking on mental illness as a form of weakness.

I stand up proudly and talk about my journey with mastocytosis.  Because it's important.  It's important to talk about rare illnesses and where we need to advance the cause.  But I am also standing up proudly to say that I have a mental illness.  I have depression and anxiety, and that is not a personal weakness.  That is not a personal failing.  It is not a flaw in my character.  And we need to advance the cause.

Sunday, August 3, 2014

A Return to Blogging

Hi Blog Readers!

Sorry for the long absence.  As I've said in the past couple of entries, I'm suffering from some moderate depression.  Blogging just fell to the wayside.  Had to focus on things like breathing and sleeping and occasionally feeding my kids.  ;)

I'm not great, but trying to focus on rebuilding myself.

Where are we right now?

It's been a rough summer.  There have been a lot of forest fires in the state, and so lots of smokes and smog.  My breathing has been compromised, my eyes have been itchy and red, my sinuses have been sore.  I've been using my vogmask a lot.  Which I'm really glad to have.  And I've been running though ketotifen eye drops like water.

My GI issues have been getting increasingly worse.  I went out to lunch with some friends this week and afterwards spent about two hours alternatively laying in bed wishing I was dead and in the bathroom wishing I was dead.  I told my husband that if I could find a doctor to put in a GI tube and put me on formula TOMORROW I would do it in a heartbeat.  HEARTBEAT people.  I would give up cheesecake forever if I could give up everything else as well.

I am having a lot of itching.  And a lot of welting and hives.  I don't know why!  That's the worst is when I can't track down the source of the problem.  I don't know if I'm having a flare up of candida or what.  I suppose I'll call and see if I can get a week of diflucans.

I'm also having a huge uptick in the hair loss. We never got to the bottom of the hair loss stuff, it could be, and likely is, mast cell mediated alopecia.  Or it could be thyroid related, although my numbers on that have been great the last couple of times that we've run it.

I'm in the process of being referred to the local hematology and oncology group.  I finally got all of the results of my bone marrow biopsy, and there are some additional concerns that need addressing.  I'm crossing all my fingers and all my toes that I will find some sort of decent care locally.  We'll see how it goes.

I'm also in the process of finding a neurologist and a new GI doctor.  So, ya know, no pressure at all.  Hoping to nail down some of these issues.  Going to discuss maybe starting botax for the migraines, since I think the topamax has leveled off in effectiveness. And then of course need to go see if I can find a brilliant GI doctor can come up with a better strategy than what we're doing now.

It gets hot out here in the Washington desert.  Yes, we have a desert in Washington, it's not all rainy evergreens.  It's was a record setting high in July. And in the midst of all those record highs I had two kids that I was chauffeuring around to soccer and swim lessons.  (Yes, I have no officially earned the title of soccer mom)  Technically the YMCA has a heat policy to cancel games if over 103 degrees.  But they made the decision at 3 pm, and often by the time we were going to our games at 6 pm we saw temperatures of 104-108 degrees.  YUCK!  It was rough!  And my mini-masto kid had a hard time of it.  He's adorable, the first game he ran out onto the field and ran back into my shadow and said "I just need some shade!"

We've dealt with some set backs for him this summer, he's had a hard time with the heat.  And he's done 6 sessions of swim lessons, the chlorine burns his poor little eyes.  I know after swim lessons we've got to go home and have some down time in the air conditioning.  And there have been several exhausted crashes driving home from soccer.

We finally got him potty trained last fall (PRAISE JESUS!!!!!!!!) so this year even when he's having bad Masto GI issues he's not getting the horrible bleeding diaper rash.  I'm so happy.  And he's so glad that his bottom doesn't hurt.  

Thus far we haven't been restricting his diet.  If he's had a busy day and he's been out in the sun or otherwise setting up for a flare I will avoid high histamine food for him.  But I think I may have to take tomatoes out of his diet altogether.  He flushes almost immediately and it almost burns his skin.

We did discover that he is completely intolerant to adhesives in bandaids.  All bandaids, even latex free bandaids.  He had a molluscum contagiosum on his chest.  So I put a bandaid over it.  And then the next day I put another bandaid the opposite direction.  And a week later you could still see both red bandaid marks on his chest.  So now we have paper tape and cotton pads for him.  He fell at the pool and cut his toe and we had to put a bandaid on him (because I didn't have the tape) and he was sitting there crying and said "I DON'T WANT THE BANDAID!!!  I DON'T WANT THE BANDAID!!"  Another mom said "He may be the only kid I've ever met who doesn't want a bandaid!"