No solids, clear liquids and NPO

I got phone calls from three of my doctors today.  None of them realized the other two also called.  It was a little funny.
One of the doctors told me they were scheduling an endoscopy and a colonoscopy to get a really thorough look at my GI tract.  They will take biopsies from various parts and stain them to see if my mast cells are generally being terrible people (my money is on this) or if it is something else (I’m looking at you, eosinophils.)  So there’s that.
Another one of my doctors said that in light of the swelling and my persistent bleeding, that I should stop eating solid foods and go on a liquid diet as a stop gap measure to try and stem the inflammation.  I was not expecting to hear this today and I’m feeling pretty sorry for myself, which is not really my style, but is my right.
It got me thinking about the fact that I am pretty used to not eating at all (NPO), or to not eating solids, or to only consuming clear liquids.  This is a side effect of being the vessel for a GI tract that feels it is my mortal enemy.  Before my colostomy surgery, I didn’t eat anything but clear liquids for a few days, while at the same time taking impressive measures to clean the surgical area.  And then I didn’t eat anything for several days after due to post-operative ileus (intestines not moving.) 
So here are my tips for not eating solids or not eating anything but clear liquids.
Figure out which meds will make you hungry.  I take high doses of antihistamines and daily steroids.  These medications increase appetite.  Steroids are actually used in elderly patients to stimulate appetite to keep up their energy.  When I have to take my large doses of antihistamines and steroids, I drink at least 240ml of pureed food (squash soup is a mainstay in my house) or drink at least 500ml of clear liquid about thirty minutes before I take them.  If you are on an NPO (nothing by mouth) order, I recommend starting bolus fluids about thirty minutes before you take your meds.
Set a schedule for liquids and keep it.  Even if you third space like me and oral fluids won’t go to where they’re needed, they will make you feel fuller and suppress appetite.  Keep in mind that suddenly consuming huge amounts of water when you don’t usually will skew your electrolytes, so be sure that you alternate with electrolyte solution.  This is especially true if you have POTS.
Learn how your current dosing affects you without food.  Medication is more available to your body the less solid food you are ingesting.  The cultural touchstone most of us are familiar with is drinking alcohol on any empty stomach.  If you drink on an empty stomach, you get drunker much faster because the alcohol is more available. Medication is the same way.  If you eating thick liquids (pureed food, smoothies), the meds will be more available than if you are eating solid food.  If you are drinking clear liquids, the meds will be more available than if you are eating pureed food.  The difference in both efficacy and side effects can be dramatic.  I recommend having someone with you for the first 48 hours or so until you can predict your reaction to meds. 
Get something for nausea.  Sometimes when you just stop eating, your body misinterprets the problem as there not being enough stomach acid, so it makes extra.  This causes “sour belly” and makes you nauseous.  Additionally, long term hunger will make you nauseous generally, so getting a script for Zofran is helpful. 
It’s okay to add flavor.  When I can only do clear liquids, I make flavor rich, brothy soups and then strain all the solids out.  This way it tastes like chicken soup and not like broth, which really turns my stomach.  Some people chew herbs and spit them out before drinking fluids so that it tastes better.
You are going to be more tired than usual until your body acclimates.  Plan for it. 

So when I am on no solid foods, my day generally looks like this:
630am: Wake up, drink coffee and take thyroid med on empty stomach.
700am: Drink morning milkshake of whatever I feel like milkshaking.  Bemoan the lack of solids in the milkshake.
730am: Take morning meds, including antihistamines and steroids.
800am: 500ml of water.
900am: Cromolyn, 500ml of water.
1000am: Smoothie/soup/whatever.
1100am: 500ml of electrolyte solution.
1200n: Cromolyn, 500ml of water, antihistamines.
1230p: Smoothie/soup/whatever.
200p: 500 ml of electrolyte solution.
300p: Cromolyn, 500ml of water, antihistamines, steroids.
530p: 500ml of water.
600p: Smoothie/soup/whatever.
700p: Cromolyn, 500ml of water.
1000p: Hook up overnight IV fluids (2L.)

1030p: Night time meds. 

This is very generic and gets moved around because I often nap in the afternoon.  I generally drink about 4L of water/electrolyte fluids a day when not eating solids and about 3L a day when I am eating solids. Not eating sucks, but being hungry all the time and not being able to eat sucks worse.  This makes the hunger bearable. 

Becoming reality

I scheduled my colostomy surgery about six weeks before I had it.  That afforded me a comfortable window of time to overthink it and work myself up.  I am a logical person.  I am a scientist.  I understand the risks and rewards of procedures and meds and so on.  But I am also human.  While I knew it was the right decision, when I was alone, I often thought about all the ways it could go wrong.
One of my friends asked me if I was ready for surgery a couple of weeks before I went in for it.  “I wish I could just do it right now,” I answered.  “Once it’s my reality, it’ll be fine.  This thinking about it all the time is exhausting.”  I think that sums it up well.  I just need these things to happen because once they become my reality, I just deal with it and move on.
Part of why mast cell disease is scary is because so many things can go wrong.  That doesn’t mean they ever will, but even if you feel confident you can manage your symptoms, you can’t help but think about all the horrors lurking in the dark places of the world.  But it’s not productive or comfortable to live your days living afraid of all the terrors that might befall you.  When living with mast cell disease is your reality, you just do what you have to do to get through your day.  It’s okay to worry as long as it doesn’t keep you from living.
I got a port placed today.  I have known this was coming for some time and I know plenty of people who have them.  It was not something I was logically worried about. 
But last night, the mental gymnastics started and suddenly I was worried about IV contrast accidentally being used and my friends and family reading my journals after I died from the reaction.  There was no reason to think this would happen.  It was pure ridiculousness.  But that doesn’t mean it’s not scary. 
I told a friend about it.  “Oh, I thought I was the only one who did that!” she said.  No, you’re not.  We all do it, whether or not we admit it. 
This morning I arrived at my hospital at 6:30am to have my port placed.  I met with the PA doing the procedure at 7.  He had read my entire history (“Which is really long and interesting,” he noted) and did some research on masto.  He went through the entire procedure, what materials would be used, what meds would be pushed, and made necessary changes.  (No Tegaderm, no chlorhexidine, absolutely not under any circumstances IV contrast.)  He asked what I wanted for premeds and ordered them for one hour before the procedure exactly as I requested, right down to the diluted Benadryl pushed over 10 minutes followed by a slow flush.  The nurses and technologist were excellent and the procedure went very well.  I am very sore and tired, but I have an accessed port and no PICC line and no reaction to speak off.  That’s what I call success.
Whenever my body changes in a noticeable way, I show it to my animals and let them investigate it.  Tonight I sat on the floor and Story came over and sniffed at my port and mouthed at it a little.  “It’s okay,” I told her.  “My body used to look different but now it looks like this and it’s okay.”
And you know what?  It really is. This reality is not so bad at all.
 
 
 

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.

This is what being sick looks like


I don’t like when people tell me to be positive.  I am quite positive, generally.  But pretending that being sick is this perpetual ethereal learning experience that imbues me with this magical understanding of life is not realistic.  I am allowed to be upset.  Most days being sick doesn’t bother me.  Sometimes it makes me sad.  Today is one of those days.
I am aware that I often don’t look sick.  But this is what being sick looks like for me.

 
 
It looks like an entire cabinet full of oral meds, IV meds, ostomy supplies, PICC line supplies and miscellaneous medical stuff.
 

 

It looks like meds and epi at the bedside, always.

 
It looks like blown veins from poor IV access.

 

It looks like low blood pressure and tachycardia.

 
 

It looks like a medical alert bracelet.

 
It looks like a colostomy bag and swollen, hard, scarred abdomen during a bowel obstruction.

 

It looks like industrial strength equipment to take a bath.

 

It looks like pitting edema.  (This picture was taken five minutes after I rolled up the sleeve over my PICC line; the impression stayed for hours.)

 

It looks like flushing even after 120mg IV solu-medrol, 100mg IV benadryl, 40mg IV pepcid and one dose of epi.  (On top of daily meds.)

 
It looks like getting oxygen during anaphylaxis.

 

It looks like feeling like you’re winning when you get to infuse at home with your new PICC line.

 
It looks like needing IV benadryl in the middle of the night.

 

It looks like being grateful for a central line.

 

It looks like slow pushing IV meds.

 

It looks like weird rashes all over my body.

It looks like sharps containers full of reminders.
 
This is what being sick looks like.

Seattle, redux

I was diagnosed with mast cell disease in January, 2012.  At the time I was diagnosed, I was sleeping through entire days, so brain fogged that I frequently forgot basic facts, and spent most of the time I wasn’t asleep in the bathroom.  I was a hot mess.  My mast cell specialist ordered the relevant tests but was sure this was some kind of mast cell disease, so he put me on medication immediately. 

About two weeks after starting medication, I woke up one morning and felt better.  Not 100% better, but better than I had felt in months.  A few weeks after that, I went back to work.  I was trying to learn the boundaries of my disease but in those first few months, I honestly thought that I might get my life back.  I still needed a lot of rest but I felt stronger, happier and much more functional.  I call this my “honeymoon period.” 
During this time, one of my dear friends came home from Seattle to have a wedding shower with her Boston family and friends.  While making duct tape flowers, I decided I was going to go to Seattle for the wedding.  I had been feeling pretty good for a few months and figured there was no reason not to.  Several of our friends were going so I figured if I got into trouble, there would be people to help me. 
So I bought airfare to Seattle and arranged to fly out and share a hotel room with one of my friends.  I requested the time off from work and didn’t really think very much about it.
The flight out there was fine.  We got picked up from the airport and found a bar that served us grilled cheese sandwiches and tomato soup on a very wet night.  We went back to the hotel and crashed.  So far so good.
In the morning, we wanted a big breakfast.  We walked around Seattle and eventually ended up at an awesome place called Glo’s.  I had Eggs Benedict and a lot of coffee.  I then discovered that I could no longer go to the bathroom. 
I didn’t know exactly what was happening but I knew that it was different than anything I had experienced before.  I have had GI problems my whole life.  Something was wrong.  We went back to the hotel and things got worse into the next day.  I called my doctor and he agreed that if I felt it was safe, that avoiding going to a hospital in Seattle was the best idea.  I employed some extraordinary measures, put my friends to work and pushed through the pain to make it to the wedding.  I’m glad I did, but it was not the trip I wanted to have.  It proved definitively that I was sick, that I was always going to be sick, and if I didn’t remember that, I was going to end up in a lot of trouble.
That trip to Seattle is the very first time I gambled that I was healthy enough to do something and lost.  It was also the point at which I realized my mast cell disease was seriously damaging my body.  The dehydration caused by the flight had turned an annoying but manageable situation into a nightmare.  It would have happened eventually, I’m sure, but the fact that I wasn’t near my doctors and home when it happened made it worse.  In the few months after I got back, I had scopes and tests and met with a surgeon.  My systemic symptoms were being triggered by the pain and poor lower GI function.  Less than a year later, I had surgery to place a colostomy. 
Next week, I’m going back to Seattle.  It feels a lot like I have a score to settle.  There’s going to be a 40’s lounge night and a trip to Portland and cute dresses and maybe a death tour.    There’s also going to be low histamine food and some flushing and probably vomiting and possibly some anaphylaxis.  And maybe I’m going back with a central line, a colostomy, lots of IV meds, several bags of Lactated Ringer’s, ten Epipens, a backpack full of oral meds, healthcare proxy paperwork, sterile dressing change supplies and a best friend who can push my meds if I get into trouble, but I’m going back.  Stand up and fight.
I’m coming for you, Seattle!  This is going to kick ass.

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.
Sure. 

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?
Yes.
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.