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mast cell disease

Birthday wish

I turned 30 on my last birthday.  It was very cold outside, but it was dry.  I stood around a fire with my friends that night and looked for the moon.  It was barely alive, just a white sliver hiding behind the clouds.  It matched my mood.  The knowledge that it would grow to be heavy with light in the sky was little consolation.

The day before my birthday party, I cut my vacation short to see a rheumatologist.  She was sympathetic and wise, but largely didn’t know what to do with me.  She sat with me for two hours while we talked in comfortable armchairs.  It didn’t help much in the way of the treatment, but sometimes unburdening myself is treatment enough. 

I watched as my sister lit the candles on my birthday cake.  I wasn’t in much of a wishing mood.  I leaned forward and for the first time in several years, I did not wish to get healthy in the coming year.  Instead, I wished for a world without mast cell disease, and I meant it. 

I think about mast cell disease all day long.  I dream about mast cell disease.  When people ask how I’m doing, I am completely honest.  I read mast cell papers, write mast cell articles, answer mast cell questions.  I tell stories about this mast cell life I live because I think if I try hard enough, I can make people understand what it means to live like this. 

But all these words can’t make them feel the way my pain throbs under my ribs.  They can’t make them literally hear connective tissue tearing when I reach too far to tip something closer with my fingertips.  They can’t make them feel the silent terror that swells anew every time I put something into my mouth. 

I tell people about my life in graphic detail because I think if I try hard enough, I can make them care about mast cell disease.  And maybe if enough people care, someone will do something about it. 

Someone was telling me about their recovery from surgery today.  I listened while standing on one leg, a habit I developed when I broke two bones in my lower back as a teenager.  “Oh, that happens because of mast cells,” I interjected.  “Mast cells are involved in tissue remodeling.” 

I find myself saying things like this a lot lately.  “That’s because of mast cells.”  Scab itchy?  That’s mast cells.  Flushed after running?  Mast cells.  PMS?  Mast cells.  Mast cells are everywhere, doing everything, all the time. 

What I find very strange is the fact that this ubiquity of mast cells is recently making me feel more connected to people.  Every time I tell someone that their mast cells have done something to them, I feel like I have forged a tiny bit further in this daily struggle to make people care.

Living with mast cell disease seriously sucks, but I can’t deny that it forces me to live my values.  Last year when I wished for a world without mast cell disease, I knew that it would take brutal, public honesty about my life and my disease.  I knew that it would take constant studying, constantly talking about my personal health, and constantly being willing to educate people. 

In the last month, I have been asked to talk about life with mast cell disease to key opinion leaders, researchers and doctors in the mast cell community.  I have been approached by a start-up looking to lay the groundwork for mast cell research.  I have received an overwhelmingly enthusiastic response to an upcoming department presentation I am giving on mast cell disease. 

I know that going to a presentation won’t make them understand what it feels like to live in my body.  But I don’t think that’s necessary for progress to be made.  Maybe all we need is for them to say, “I bet it sucks to live in a body like that.”  Maybe that’s enough. 

This is what change looks like.  This is what it looks like when we’re a little closer to a world without mast cell disease.

Last days here

I have a lot of flaws, but one thing I am is fair.  I have always seen the world the same way: balanced in all things, if you wait long enough.  It seems to me that life is just a series of interconnected decisions, a closed system; that if you had a lot of bad, you would have a lot of good to balance it out, to zero the sum.  Part of the difficulty of being sick is that, in the back of my mind, I am waiting for it to balance and it never seems to.  In the quiet moments, it leaves me disappointed and confused.
Life gets a lot less confusing when you realize that even if it balances, it is not fair, and that sometimes things happen without a reason.  It is much less confusing when you accept that sometimes, no matter how hard you fight, life breaks you in a way that can’t be fixed.
I have been trying for a while to remember a particular day: the last day when I was healthy.  It’s hard because every time I think I have identified the window in which it would have taken place, I am reminded of some previous strange illness or reaction that looks decidedly like masto.  I remember my back injury when I was 13 and the bizarre subsequent neuro issues.  I remember breaking out in hives from eating salsa and thinking for years that I was allergic to tabasco, chili and cayenne.  I remember sudden, severe abdominal pain as a child and burning lungs.  The truth is that I lived my last day as a healthy person so many years ago that the memory is lost, and I never even knew it. 
My disease has changed this past year.  It used to be that I would have sick days and then they would pass and I would feel better, normal.  Now I have bad days and normal days, except now on my normal days I am nauseous and flushed and in pain.  Like so many things about my life, it is hard to isolate exactly when it became this way, constant and more pervasive.
I cherish these normal days, so wonderful compared to the bad ones.  In the dark of night, I fear they will end forever someday.  What will I do, when they are all gone? 
I worry that maybe this feeling of transience I experience now is a sign of this happening.  I am afraid that maybe I’m living the last days of this stage of my life, and when it is gone, I will miss it.

A long, long way

This weekend, one of my oldest friends got married.  The wedding was about three hours away.  My mother rented a Mustang convertible, I packed all my various medical supplies and a couple of dresses and we drove up on Friday night.
“Can you ride with the top down?”  she asked, excited.  I thought about it.  I thought the sun might make me feel gross, and it was very hot out.  But it isn’t every day that you get to drive around in a convertible so I figured I’d give it a shot.  I put on sunscreen and sunglasses and away we went.  It was very Thelma and Louise.
I felt gross on Saturday morning, but I didn’t really care.  I loaded up on meds and tried to keep the nausea at bay.  I put on my dress and braided my hair.  I crossed my fingers that I got through the day without vomiting indiscreetly or needing epinephrine.  And I did.
The bride and her family have been close to me and mine for over twenty years.  She and I grew up together.  She and her mother both told me how glad they were that I made it.  They knew how sick I had been, and that making the trip was hard on my body.   So often people don’t understand how hard things are for us that when people do understand, it means a lot. 
It was this month last year that I started having serious bone pain.  It was this month last year that one of my doctors told me that he thought my CT scan had been misread, that my spleen looked swollen to him.  It was this month last year that I lost the semblance of health I had been holding onto. 
It was this month this year that I drove to my friend’s wedding three hours away in a convertible on a hot summer day.  It was this month this year that I went to the wedding and didn’t need epi or IV meds while I was there.  It was this month this year that I reflected on how far I had come while driving home from the White Mountains.  There has been a lot of struggle, but there have also been a lot of good days, and some really great ones that I’ll never forget. 
One of the things about being sick that healthy people don’t experience is how satisfied and accomplished you feel when you are able to do something important in spite of your illness.  I was exhausted and in a lot of pain when I got back to the hotel last night.  But I was also very happy that I had been able to be present for such an important day.  I was proud of myself and my body for pulling it together.
You don’t get a choice in being sick, but you do get a choice in where you place your energy.  A lot of the time, it goes to mundane things, cooking, shopping, laundry.  But every once in a while, I save up and blow it all on something big.  It will take a few days to get back to my baseline, and I took a lot of extra medication, but some things are worth it. 
I can live with this if I can still do the things that are worth it.  Having mast cell disease doesn’t matter when you get to be with someone you love while they have the happiest day of their life.  And when I look back, I can’t deny that I have come a long, long way this year.

Mast cell disease and chronic constipation

Okay, folks.  I like to maintain the illusion that I am at least kind of classy, but I’m about to do something that will erase that perception forever.  It’s time to talk about poop.
One of the more embarrassing things about mast cell disease (and one of the things that doesn’t get talked about a lot) is the fact that it involves a lot of poop.  You spend a lot of time in the bathroom, and can never be far from one.  It is so disheartening and humiliating.
The very first time I had a full blown mast cell attack was in September 2010.  I had drunk a lot of alcohol, which was unusual for me, and had a very stressful week, which was not.  A few hours after I got home, I got nauseous and could not stop getting sick.  I also got diarrhea and spent the entire night in the bathroom. It was awful.  Imagine my horror when it happened again a few weeks later, and with increasing frequency until I was diagnosed with mast cell disease. 
In the few months after I was diagnosed, I started on several mast cell medications.  My mast cell attacks largely subsided, and diarrhea was no longer an issue.  Hooray!  There was much gladness throughout the land.  Then I went to Seattle and found I was unable to go to the bathroom.  I have written about this at length before, so I won’t rehash the details.  I went on to develop true bowel obstructions, as well as some pseudoobstructions, severe abdominal pain, bleeding, and literal inability to poop.  I got a colostomy in April 2013 and you could not pay me to reconnect my colon to my rectum.  It improves my life that much.
Diarrhea is more associated with mast cell disease because it is associated with anaphylaxis.  Even when not anaphylaxing, people often have loose stools and increased frequency.  However, a French study of mastocytosis patients found that only 12% had four or more stools per day.  Doctors are realizing that while diarrhea is more common during episodes or anaphylaxis, most patients find themselves chronically constipated or pseudoobstructed.  In that same French study, 57% of SM patients reported having at least two bowel pseudoobstructions a year.  Pseudoobstructions are when your body behaves like it has a bowel obstruction, but it does not.  It is often associated with long term constipation and GI dysmotility.
I pretty much consider myself the poster child for mast cell derived constipation, so I am going to tell you everything I tried and share all of my tips with you.  Please keep in mind that at the end, I was functionally unable to defecate, so I am relating the effect of my methods to their likely effect on you. 
When I started having major difficulties, I would make myself smoothies twice a day.  These smoothies had strawberries, pineapple, banana, yogurt and orange juice.  This made the stool softer.  I realize these are high histamine, which for some can contribute to diarrhea, and thus explains why it moved more quickly through my GI tract.  I tried adding this stuff called Green Super Food, which did not seem to make a difference and also smelled weird.  Later, I added two scoops of Metamucil.  I didn’t see any benefit, but it didn’t cause a reaction.  It was recommended by mast cell GI specialist. 
I took 300mg of docusate twice daily.  This is several times the recommended dose.  It made the stool softer and it moved through my GI tract more quickly.
I tried senna, which I later discovered can increase serotonin and exacerbate mast cell symptoms.  It did help move things along, but it made me very nauseous.
Glycerin suppositories did nothing for me.  Literally went in and stayed there.  I once punched a package of glycerin suppositories.  It was not my proudest moment.
Bisacodyl suppositories helped, but did not result in complete evacuation.  My rectum is damaged, so inserting suppositories was painful and caused bleeding.
Magnesium citrate worked if I also used a saline enema, but I had to drink two bottles of magnesium citrate.  It usually made me throw up and flush.  It was not a great option, but in an emergency, it was successful. 
Castor oil did nothing except make me grumpy because of how gross it tasted.
Saline enemas were my mainstay.  I used two every three days.  At the end, I sometimes needed to manually disimpact, which is as gross and humiliating as it sounds.  Frankly, I am only admitting it because I’m sure someone else has needed to do it and I want them to know that they are not alone and they are still awesome. 
I tried miralax because my very well intentioned PCP felt I should try everything before I had my colostomy, which I appreciate.  I took half a bottle and three days later still had to use enemas.  It didn’t hurt me or cause a reaction, it just did nothing.
About three weeks before my surgery, I met with a man who did bowel retraining at another hospital in Boston.  This therapy was originally developed for kids with Hirschsprung’s disease.  The idea is that the colon and rectum can be trained to pass stool at the same time every day.  This is a good option for people with long term constipation and can be done at home.  It works by picking a time every day (it is important that it be done at the SAME TIME each day), inserting a glycerin suppository and trying to defecate.  For most people, glycerin suppositories will stimulate contraction of the relevant muscles so you should not be straining.  DO NOT STRAIN.  I’ll get to that in a minute.  Eventually, your body becomes trained to defecate at the same time each day without the glycerin suppository.  For several reasons, I did not do bowel retraining, but it does work for some people. 
A lot of people who are chronically constipated have pelvic floor dysfunction.  This means that your muscles are not working correctly and so they are holding in the stool when you strain.  Often, you can retrain your muscles with biofeedback. This can be done by a physical therapist trained in pelvic floor PT.  
I strongly advise anyone with chronic constipation to get an anorectal manometry test.  This gives a lot of information about how your body feels relevant sensations and how it works when defecating.  I had this done twice before my surgery at two different hospitals.  In both instances, I was found to have substantial nerve damage and so my body did not feel the need to go the bathroom until about five times the normal amount of stool was present.  The stool sitting in the colon caused it to further dehydrate, making the problem worse.  It was the perfect storm of unmovable shit.  The man who did bowel retraining told me that he had never met anyone whose body seemed so determined to prevent them from defecating.  But he said it like it was an honor, which made the whole thing even stranger.
I find bowel transit time tests to be very helpful and easy.  You swallow a pill that contains a bunch of tiny corkscrews.  You get xrays taken at specific intervals (I think it was 1 day after, 3 days after and 7 days after) and the corkscrews show where they were pushed into the tissue.  If they were pushed into the tissue, it means the stool sat in that place for a long time.  It allows you to see which part of the GI tract is not working.  I also recommend a colonoscopy with biopsies and staining for mast cells. 
I have had many other GI tests, as I have had GI problems since well before I knew I had systemic disease.  I have had multiple endoscopies, esophageal motility testing, pH probe testing (this was before they developed the pill you can swallow that records the pH data), and an MR defecography.  I do think that there is a subset of people for whom this last one is a useful test, but if your doctor is ordering it, I encourage you to ask how the data they get will change your treatment plan.  It is literally being forced to defecate into a diaper in an MRI machine in front of a bunch of strangers when you know you can’t.  It was awful.  Again, I’m only admitting this because someone out there has had this test and is mortified and thinks they are alone and they are not. 
Straining causes as much damage as constipation.  It causes long term nerve damage, hemorrhoids, bleeding and fissures.  You should not be straining.  If you need to in order to defecate, something is wrong.
Though I was passing stool regularly and was no longer generally constipated after damaged portion of my colon was removed, I still got bowel obstructions.  Obstructions are unbelievably painful.  They hurt worse than getting my colostomy.  My bowel is herniated in a few places and it twists on itself so the stool can’t get through.  My colon also swells seriously when I have a mast cell reaction or anaphylaxis, which makes it harder to pass stool.
If this happens to you, and it is a new phenomenon, you should go to the hospital.  Bowel obstructions can cause bowel rupture and are serious.  If this happens to you regularly, and your doctor is okay with you managing at home, my recommendations are: hot liquids (tea works best, though not all mast cell patients can drink it); lots of water (IV fluids if possible); heat packing the abdomen; taking a hot bath; abdominal massage, especially if you can find the obstruction (it is hard when you massage the abdomen); moving, like walking or yoga.  All of these things also work for pseudoobstructions.  I know that heat is bad for some of us, but I find that in this situation, the benefit outweighs the risk of reaction for me.  Especially because the pain causes me to react anyway, so I’m generally already taking extra meds by that point.
Because bowel obstructions are so painful, we are often given opiates to manage the pain, which further decreases GI motility and reinforce the issue.  Most of the meds we take for mast cell disease also cause decreased GI motility, so we have to be careful with taking anything more that has that side effect.  I have found only two medical therapies to be helpful in managing recurrent obstructions: steroids and IV fluids.  Since starting IV fluids three times a week, I have had some bowel episodes but they were minor compared to the years of constant nonsense I had put up with.
The low residue diet is designed to be easy to pass through the colon.  However, it is not very masto friendly.  It is also called the “junk food diet.”  I will sometimes do it for a few days if I am very sore.  When I first started eating low histamine, I was very sore because my GI tract was working so much harder to digest everything. 
Sometimes there is no choice but to remove the damaged portion of bowel and place a permanent ostomy.  If you are considering this option, I am very happy to talk to you about it.  It is not the end of the world.  I am so glad I got mine.
I know this is a lot of information, but the bottom line is that a lot of people with mast cell disease can’t poop. It is painful and humiliating and I want them to know they are not alone.

PICC Lines: Nomenclature, fluid infusions and IV Benadryl

My PICC line set up and what the various pieces do:

How to hook up a fluid infusion: 
How to dilute and administer IV Benadryl. 
IV Benadryl should always be diluted as it can be damaging to the veins and can cause spasms of the airway if pushed too quickly.  It should always be pushed slowly. I generally dilute 1ml (50mg) of Benadryl with 9ml of saline for a total volume of 10ml, which I then push over about 15 minutes.  The flush after the Benadryl should also be slow.  I push that over about 5ml. 
I made a video of me drawing blood for labs through the line and then deleted it by accident because I am a fool.  Bah!  So I’ll make another one next week, as I don’t have any spare tubes and Vacutainers.  I am putting together a video on dressing changes as well.

The danger of travelling

My life has gotten to be a lot of work in the last couple of years.  My chronic tendency toward dehydration via third spacing means that I’m at high risk for repeat bowel obstructions.  I anaphylax a lot, sometimes without a trigger.  I have a colostomy.  I am pretty much guaranteed to have a variety of medical supplies, syringes, IV meds, epipens and alcohol swabs on me at all times.  I finally have a reason to have a huge purse. 

I am good at advocating for myself and getting my needs met, in all venues of my life.  I knew that travelling would exercise those skills, but I honestly didn’t worry about it very much.  I am very, very familiar with FAA and TSA regulations and how they apply to someone travelling with a chronic illness/ medical device/ lots of medication.  The bottom line is that they are required to accommodate you provided you have the appropriate documentation.  Which I have.  In spades.
I called my airline last month and explained that I had mast cell disease and required several accommodations.  These accommodations included a wheelchair from ticketing to the gate, gate checking my larger suitcase (which also contained medical supplies), boarding early so that I could administer IV meds and set up my infusion, and that I needed to infuse for the duration of the flight.  The person I spoke with was extremely helpful.  She asked some questions about my infusion pump and the volumes and types of medications I would be bringing.  She asked that I bring a letter from my treating physician stating that these medications needed to be with me while travelling and that I needed to infuse for the duration of the flight.  No problem.
I arrived at Logan Airport and had a very painless experience.  They opened up all my bags and swabbed my hands and my meds for explosives. They patted me down.  They were very courteous and helpful.  When it came time to board, I was the first one on the plane and was happily infusing fluids when we took off.  It was really easy.
Then I arrived a week later for my return flight and it was a mess.   It made me really mad, especially in light of my previous positive experience.
The first problem was with gate checking my bag.  I explained to the agent that it had medical supplies and she tagged it appropriately and said it was all set.  Then another agent came up to me and told me that I couldn’t gate check my bag because it was too big.  I told her it contained medical supplies.  She argued with me.  After about two minutes, I told her again that it contained medical supplies.  “Oh, well you didn’t tell me that!” she exclaimed, rolling her eyes.  Whatever, lady.  Gate check my bag.
I got on the plane and pulled out my stuff to give IV meds.  A flight attendant came over and told me to put my backpack containing my infusion pump and meds under the seat.  I told her that I couldn’t because it was going to be attached to my body and I didn’t want there to be tension on the IV line.  I told her that I had spoken with the airline and that the infusion pump/meds are not considered luggage and can be with the passenger in their seat.  “The FAA isn’t going to let you do that,” she said.  I explained that I had infused on the flight from Boston to Seattle.  I offered her documentation and she talked over me.  “Well, you can let me know when you’re done and we’ll take off then,” she told me.  “It’s an eight hour infusion,” I told her.  She shrugged and walked away. 
A few minutes later she came back and told me that “the FAA sees things like this in black and white, and [I] can’t expect them to see things in grey because of people like [me.]”  I didn’t reply and she said, “I’m trying to be sensitive here.”  I do not think that word means what she thinks it means.
So I didn’t start infusing until I was flying.  This is important to the story.  When I started infusing, I noticed there were a lot of bubbles in the PICC line extension.  I realized that the extension was cracked and air was getting into the line.  This is very bad.  I stopped the infusion and had to trouble shoot the situation at 30,000 feet where I couldn’t just call my IV service and ask.  The fact that I couldn’t start infusing while on the ground turned a manageable situation into something very scary. 
While I was trying to identify the best course of action, the lady came over and asked if I felt okay.  I told her that I feel like I always feel.  “Do you need help?” she asked pointedly.  I just looked away.  Her behavior was making me mad, which was causing me to react while I was managing this situation.  I was really not amused.
I ended up disconnecting my extension and connecting the infusion directly to the PICC line without a clave to keep the end of my PICC line sterile.  This required some changing of hardware in the obviously less than sterile environment of an airplane.  I kept the clamps on the line and did not infuse fluids, which guarantees me a bowel obstruction in the next day or two, which guarantees me anaphylaxis.  I bought Wifi and messaged all of my PICC knowledgable friends because I didn’t know what else to do.
I’m now going to have to have a conversation with my doctor about this in the morning and the line will almost certainly be pulled and a new line put in because of infection concerns.  After I had to have IV meds administered to me by my friend (since I can’t access my PICC line without an extension), I put the cap directly on the line.  It is unusable until I get someone to come out to my apartment and fix it.  Thanks, airline lady!  I was so hoping to have more surgery this summer.  I also really enjoy having a line for emergency meds that I can’t use. 

The really unfortunate part of travelling while you’re sick is that it doesn’t matter if you know your rights if everyone else doesn’t know them too.  This woman’s behavior put me in danger.  It remains to be seen if I get a central line infection, but at the very least, she made it a serious possibility.  I am going to get a bowel obstruction because of this situation, which is massively painful and causes anaphylaxis.  This is unacceptable.  I don’t want this experience for anyone else. 

I am reaching out to the airline and hope they will do something about this.  I will keep you all posted.

The person I never wanted to be

“I wonder if I’ve been changed in the night? Let me think: was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, ‘Who in the world am I? Ah, THAT’S the great puzzle!’”
– Lewis Carroll, Alice in Wonderland
My mother ran a daycare in our house when I was growing up.  When we would play Disney princesses, the other girls would quickly claim their favorite characters while I tried to find one who was suitable.  “I want to be Alice,” I would say.  I’m such an Alice.  “This is only for princesses,” the girls would whine.  I would choose someone else.  It was easier than fighting.
We don’t always get to be the people we want to be in life.
Growing up, I wanted to be a doctor.  I did all the things I was supposed to in order to achieve this goal – get a science degree, work in health care, take the MCAT, get recommendations.  I did everything I was supposed to.  But when it came time to apply, I was too sick to do it.  This was years before I was diagnosed and was having increasingly strange issues.  I did not want to be in a situation where I had to decline admission because of health issues.
So I went to grad school instead.  I graduated both college and grad school young, and I figured there would be time to get healthy and go to medical school later.  Time is so enormous when you’re young.  It stretches out before you, overwhelming in its enormity.
And then one day you wake up and you’re 30 and you never got healthy enough to go to medical school.  There is this idea that you can do whatever you want in life.  That’s not really true.  You can do whatever you want if you execute a series of decisions in a certain time frame. 
It’s so hard to look back sometimes. 
If there is any universal truth about chronic illness, it is that it changes you fundamentally.  You can never again be the person you were before you got sick. 
In some ways, I am grateful for this fact.  There are a lot of things that I didn’t like about myself when I was younger.  There are still some things I don’t like, but I am proud that these number far fewer.  Being sick has made me more compassionate, less judgmental and more patient.  Of course, I’m not always like this.
In 2012, I went to Seattle for my friend’s wedding.  While there, I got very, very sick.  I was fortunate to be travelling with a very old and dear friend who took care of me for the duration.  I’m most fortunate that he put up with me.  I am not fun to be around when I’m in pain.  The desperation you feel when you’re suffering eliminates the mental route that takes you through manners and social graces.  I was so heinous at the end of that trip, I am mortified looking back.  Knowing that he forgives me and that we are still close friends does not negate the horror I still feel.
People say a lot that chronic illness molds you into a better person.  I disagree.  I think it splits your very nature in half: your best qualities amplified on your better days, your worst apparent otherwise.  It is like sharing a body with doppelgangers, light and dark, never knowing which one will be behind your face.
Some people feel that because it is part of the disease, it is acceptable to lash out at those around them.  And though I do it too, I disagree that it’s excusable.  I don’t want it to be okay for me to be mean to my friends and family.  I don’t want it to be an inherent part of a relationship with me.  I am responsible for the damage I wreak, even if it’s not my fault.
Whether or not these behaviors are driven by illness, we are still responsible for the people we become.  And though I never wanted to be this person, I am, and I am responsible for that. 

Ask me anything (kind of)

Someone asked me recently if I would do an Ask Me Anything, Reddit-style.  The answer is no, because there are things I don’t want to put out on the internet at large.  I am a pretty open person, but there are things about my health and life that I don’t feel comfortable sharing. 

I do recognize that a lot of people who read my blog/see my posts on Facebook probably don’t know very much about me as a person, so I figured I’d do a post about me.  I’ll answer some questions I’ve gotten at the bottom.
I was born and raised in Boston.  For college and grad school, I went to UMass Lowell, where I got a really excellent biology education.  I strongly urge anyone looking for a serious science school with affordable tuition to look at UMass Lowell.  My undergraduate degree is in Biological Sciences, my graduate degree is in Biology (concentration in Microbiology.)  I planned to go to med school, and took my MCAT, but was too sick and too unstable.  It is still my dream to go, but I realize that’s unrealistic. 
My parents are both from Cambridge.  My mother, Gail, works as in Operations for a non-profit.  Her background is in childcare, and we had a daycare in our house when I was growing up.  My father, Mike, worked in the automotive industry until he had a heart attack in 2008.  He is now disabled and does not work.  My sister, Kristin, is five years younger than me and has degrees in Mathematics and Economics from Boston University.  She works for a large financial corporation in Boston. 
I am very close to my parents and sister.  I live three houses down from them and spend a lot of time at their house.   I have a large extended family including several nieces who always cheer me up.
I have a dog named Harry who is eight years old.  He is extremely handsome but not very bright.  He enjoys walks and cookies.
I also have a rabbit named Sadie B, who is going to be nine in the fall.  She has a terrible attitude and is currently chewing a hole in my wall as I type this.  We are not friends right now.  She likes lettuce and electrical wires.
I put myself through college by working in a pharmacy.  At the time I worked there, having a federal license enabled technicians to compound, so I did a lot of that.  I worked in pharmacy for almost ten years.  It was often frustrating, but I learned a lot about health care, insurance and medication in that job. 
After grad school, I worked in Research and Development for a small biotech company that developed diagnostics for blood stream infections.  I helped to develop tests for bloodstream and urine infections that are now FDA validated or EU CE marked. 
I now work in the biomedical research division of Novartis, a very large pharmaceutical company.  Novartis makes some drugs that are used to treat mast cell disease, as well as a drug in clinical trials for mast cell disease.  I do a lot of operations work now due to my often needing to work from home.  I learned how to do some coding last year and have done a lot of that.  I like coding and it’s easy to do from home, so it’s a good fit.
How long have you had mast cell disease?
I was diagnosed with mast cell disease in 2012.  I had been actively seeking diagnosis since 2008, and had been sick for a few years before that.  It has gotten progressively worse and more disabling for me.  I am fortunate that some of the top mast cell doctors practice in Boston so I am able to get excellent care.
How are you able to work if you are so sick?
I live alone and still work full time, which a lot of people ask about.  I have a lot of help.  I can still drive, but only if I don’t take pain medication, so I generally prefer to have someone else drive me.  My father usually drives me to work, which is about twenty minutes away.  I either take the train home, someone gives me a ride, or I take a taxi, depending on how I feel. 
How are you able to live alone if you are so sick?
My friends and family help out with household chores, like food shopping and cleaning, as I often don’t have the energy to do these things.  I am also able to give myself IV meds/epi at home without going to the hospital if I have anaphylaxis.  My doctors are comfortable with this because of my lab background, which means I am trained in keeping things sterile while accessing my PICC line.  Mostly I am able to live alone because if I call someone and need help right away, they are going to come.  If I can’t get in touch with whoever I called, I’m likely to get in touch with someone who will help. 
Why do you have a PICC line?
My IV access is terrible.  Over the years, frequent blood draws and IVs have caused hardening of a lot of my veins.  There has also been “mast cell deposition” at the site of access, which feels like sand when you rub your finger over it.  This means that it is easy to get a needle into my veins, but you often can’t get blood return or fluid in.  The PICC also enables me to give myself IV therapies at home. 
Was it hard to learn to access your PICC line?
No.  I watched once and did it.  I have many years of lab training to back me up, so I am very comfortable with sterile technique and syringes.  I also have a good understanding of the medications and the procedure and how to troubleshoot it if necessary.  I realize it is not always so easy for everyone.
Can you do a video about your PICC line?  My daughter is getting one.

If your family is Irish, why is your last name Klimas? 

This is my grandmother’s married name from a previous relationship, which became my father’s last name, and so on down the line.  The name Klimas is Lithuanian.  We are not Lithuanian.
Do you get Novartis drugs for free?
I have very good insurance and yes, I get Novartis drugs for free.  Yes, I realize how lucky this makes me as a mast cell patient. 

Does anyone else in your family have mast cell disease? 

My sister has had anaphylactic reactions to specific medications.  She has been tested for mast cell disease and is negative.  She does not have ongoing mast cell type symptoms.  My father has a hematologic disorder and autoimmune disease, but has been negative for mast cell testing, including bone marrow biopsy. 

Do you do research on mast cell disease?
No, but I know people who do, and they are often able to answer questions I can’t find the answer to. 

Are you Christian?  Do you mind that I pray for you? 

No, and no.
Has any of your research been published?
You talk like a teacher, were you one?
Yes.  I taught microbiology at UMass Lowell while in grad school.  (This is how I paid for it.)  I also taught ASL classes out of my home for several years.  I like to teach.  Explaining things helps me understand them better. 
What do you miss the most from your life before getting sick?
I miss not having to plan every aspect of my day in advance.  It’s exhausting.  Also being able to try new foods without risking anaphylaxis.
What food do you miss the most?
Seafood.  I was actually saying yesterday that I’m going to pick a day this summer, premed the day before, give myself some IV Benadryl and have some.  I will probably need epi, which I have accepted.  I grew up eating seafood all the time and I miss it so much.
Do you speak Spanish?
Yes.  I have been speaking Spanish for almost twenty years, mostly with native speakers.  I generally speak with a Puerto Rican accent and slang, but am familiar with other dialects.  Castillian Spanish is the hardest for me.  Last time I took a proficiency test was in college and I was rated “near-native fluency.”  In college, I took literature, history and politics classes taught in Spanish.  When I lost my hearing, it became harder for me to understand spoken Spanish.  It has improved, but it’s still not always easy for me.  I read books in Spanish a lot.
Are you married?
No, and I’m not in a relationship either.  I also have no children.
What’s the best advice you’ve ever gotten?
I think this was masto related, but the best life advice I’ve ever gotten is to not do your favorite hobby as your job. 
I love languages and have been taking classes in various languages for pretty much my entire life.  I was originally a Modern Language major in college and switched to Biological Sciences after getting this advice.  I took three years of Italian and three years of German in college.  I took French in high school, four years of Russian over the course of my life, three years of ASL as a kid, a semester of Mandarin, a semester of Ancient Greek.  I spent a few years learning Arabic with the help of a native speaker.  I’m taking Hindi now.  My Irish is quite terrible, but I can exchange pleasantries.  Same for Danish.
What is your biggest dream?
To travel around the world.
Are you a microbiologist or molecular biologist?
Both.  There’s a lot of interplay between the two.  The diagnostics I helped develop were molecular tests, but my training is in microbiology.   
What is your favorite movie? 
Nightmare Before Christmas.  The Crow.  I have a lot. 
What is your favorite TV show? 
I love a lot of TV shows.  All time favorite?  Probably Battlestar Galactica. 
What are your hobbies?
I like playing games (card games, etc.)  I read a lot.  I also watch a lot of tv and Netflix now.  I enjoy hiking and rock climbing, but can’t do them anymore.  I walk a lot.  And I write.  Obviously.
If you could change one thing about your life, what would you change?
I don’t really know how to answer this.  If I could regulate my sleep, that would be great. 
Can you exercise?
This year has been kind of a disaster health wise, making exercise really hard.  Yes, I can, but it’s very difficult for me.  I walk a lot, at least 2-3 miles a day.  I am starting to do yoga again after a long hiatus for various reasons.
Have you gained a lot of weight from your medication?
Yes, in particular from long term high dose steroids.  I weighed 145 lbs when I started and now weigh 170 lbs after weaning down to 5mg prednisone.  It always takes me years to get back to my normal weight and I really hate steroids.  None of my other meds have caused weight gain.
I heard that long term high dose steroids are bad for you, and that doctors who prescribe them don’t know what they’re doing.  Why were you on them?
This is an example of things I’d rather not project onto the internet, but I get asked this really frequently so I’ll give you a pseudoanswer.  Long term high dose steroids are only worthwhile if the benefits outweigh the risk.  I was sick enough that my doctors and I felt it was worth it.  I do not regret doing it, even though weaning has been a nightmare, because I think I would have spent a lot of those months in the hospital otherwise.  Mast cell disease is not the only chronic disease I have, and the steroids were necessary to control all of the things happening in my body.
I feel bad asking you questions all the time, do you mind when people ask you questions?
Not even a little.
What things really bother you?
Rudeness and unfairness.  I am a very fair person, and it bothers me a lot when I give people the benefit of the doubt and they treat me poorly in return. 
It seems like you still have a lot of friends, how did you manage this?
My friends are amazing people.  I have lost a lot of friends, including some close ones, but I am lucky to still have a lot of very close friends.  A lot of them have been on this journey with me since the beginning. 
Is your colostomy permanent?
Yes.  I decided I did not want to try to reverse it and risk needing another surgery to reverse the reversal.  It improves my life.
Are colostomies common with mast cell disease?
I wouldn’t say they’re common, but I’m certainly not the only person I know who has mast cell disease and an ostomy.  Everyone’s disease process is different, so the need is very individual. 
Was it hard to adjust to having a colostomy?
Not really, for me.  I was so relieved to be able to go to the bathroom that it made the transition easier.  It depends I think on whether or not you feel it improves your life.  Sometimes before I shower, I catch myself in the mirror and see my stoma and it makes me feel kind of weird.  I am also not easily embarrassed and never have been, so the idea that my colostomy will fart in a meeting is not disturbing to me.  It’s just funny.  And yes, it has happened.
How do you know so much about mast cell disease?
A lot of this is having connections to researchers and also having really good journal access.  When I got sick, I spent months learning this stuff.  I took immunology in grad school and always pretty current with recent happenings in that field.  I literally read about mast cell disease every single day.  So I guess I know this stuff by brute force.
You seem very happy, do you take antidepressants?
I take doxepin for its antihistamine properties, but it is an antidepressant, so yes.   I have taken Effexor in the past, but not for years.  I get upset and mad and sad about life.  I just don’t do it all the time.  Having appropriate dosing of mast cell meds helps a lot.  I don’t really have an explanation for how I can be happy other than I like my life and think I’m lucky to have it. 
Can you travel?
We’re about to find out.  After a two year moratorium on air travel, I am flying to Seattle next month with my best friend to visit one of our dear friends.  To achieve this, I have to ship twenty pounds of medical supplies ahead of me.  Literally.  I also would not be able to do this if I did not have IV meds and IV access. 
What’s one piece of advice you would give to someone with mast cell disease?
Don’t worry about it.  It’s going to be fine, and if it’s not, worrying about it’s not going to change it.  I know this is easier said than done, and I certainly worry sometimes, too.  But I honestly don’t most of the time, and maybe that’s why I’m happy.
Have more questions?  Ask them in the comments.