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my feelings

Dignity

I have always been socially awkward. For most of my life, there has seemed to be this set of universally applicable rules that I don’t understand. In particular, I find that I am generally neither embarrassed by not impressed with a variety of circumstances that seem extraordinary to the general population. I am not the kind of person who is upset by immodesty or esoteric ideas or the rending of social rules. I never have been. I don’t know why.

The day before my colostomy surgery, I was lying on my couch, trying to take a nap. My phone rang and it was a woman from an ostomy group. I remembered vaguely telling my ostomy nurse that it was okay to be contacted by this support group. I always say yes to stuff like that because I figure it can’t hurt.

The woman on the other end was very sweet. She asked if I was upset. I told her I wasn’t. She was gentle, but she persisted. She didn’t believe me.

“No, I really just want to be able to shit,” I told her, laying my arm over my eyes to block out the sun. “Honestly, I’m a lot more afraid of the damage from my mast cell disease if I don’t get this out than I am of shitting into a bag.” She was quiet for a while. “What?” I asked.

“Nothing, it’s just….You really aren’t upset,” she said finally.

“No, I’m really not,” I answered. And I wasn’t.

She offered me her many good tips on how to hide your ostomy bag. She clearly cared a lot (and felt badly – I was the youngest person her group had worked with) so I listened. She talked about girdles and pregnancy bands and tank tops and belt things with pouches and bathing suits. It was interesting, in a sort of voyeuristic way. I thought about her when I went swimming a couple of months later. My preparation consisted of putting on my normal two piece bathing suit and going in the pool. I didn’t see any reason to hide it. I wasn’t ashamed of it.

When I found out I was getting a PICC line, several people asked me how I would cover it. “With an occlusive dressing,” I answered automatically every time.

“No, like so people won’t be uncomfortable,” they sometimes followed up.

“It’s not my problem if they’re uncomfortable,” I said with increasing irritation every time I responded. “It’s not my fault I need the line.”

Someone asked me how I covered my port a few days after I got it. “I don’t.,” I said, thoroughly tired of this line of questioning. “It’s just not who I am.”

Modifying my body doesn’t upset me, even in the ways I just described. My hair has been in turns purple, blue, red, pink and red again. I had numerous piercings, all over my body, until once, after a surgery, when I just didn’t want to put the jewelry back in. It didn’t feel right anymore.

I am sure to many people, it must seem like my disease doesn’t upset me. That’s not the case. My relative resignation about the state of my illness is a survival mechanism. It looks a lot like not caring sometimes, but that’s not what it is. The pain shows, but it’s harder to see if you’re not watching carefully. It shows in the moments when I am unable to find even a shred of dignity.

Monday morning, I started anaphylaxing at work. I had a little bit of a cold and was overtired and sore and generally sort of walking the line anyway. I walked up to the nurse’s office and gave myself IV meds while she took my blood pressure. “It’s 88/60,” she told me with wide eyes. I didn’t want to epi at work because then they would have to call an ambulance. I knew the IV Benadryl and steroids would keep me stable for a bit so I called my mother. At the age of 30, I called my mother to come get me at work because I was too sick to get home safely. The nurse emailed my boss to tell him I went home sick, which was for some reason a lot more mortifying than it should have been. My father and cousin had to go pick up my car later. It was embarrassing.  It felt undignified.

Then, later on that night, my dog threw up. I completely lost it. I throw up most days, often multiple times. If it doesn’t all get into its intended receptacle, I just clean it up. No big deal. But these last few weeks have been grosser than usual as pertains to my GI tract and I am so sick of cleaning up shit. I couldn’t deal with it. I just hit a limit of grossness and indignity in my life sometimes and it’s like I can feel my self worth just leeching away from my soul into the air around me.  It’s a perception thing and it’s so individual.  I know how strange it is to some people that I don’t mind being transparent about my life, the external signs of my internal illness visible to the world, but sometimes am upset about needing help.  I know people think it’s strange.  But it’s not my problem, and it’s not my responsibility to behave in a way that makes people comfortable with my illness.

Someone posted this week about a “friend” who was upset that they joked about their illness. My response was something like, “That guy’s an asshat, it’s not your job to act how he thinks sick people should act.” And it’s not. I don’t keep my central lines uncovered because it makes some statement about illness. I keep them uncovered because I genuinely can’t be bothered. It’s just not who I am to care.

But I care about my disease, and I care about the life I can’t have because of it, and sometimes, it’s too much. Some days I am tired of cleaning up vomit and emptying bags of my own waste and cleaning blood stains out of my clothes. Do not mistake my resoluteness for apathy.

This ability to move forward, to not be upset about mundane things – it is a learned skill, not a natural acceptance of the terrible reality of chronic disease. We are just trying to find grace in life. We are just hoping to navigate through the rough pockets with some autonomy and a little bit of dignity.

 

Artifact

I have spent a lot of my professional life using microscopes. There is this rhythm you get into, when you do it a lot; lifting the edge of the slide out of the book with a gloved fingernail, pulling back the guard to slide the glass into place, spinning the fine adjustment back and forth with your fingertips. Sitting taller to look through the eyepiece into the tiny world below. Looking closely to see the ways you may have changed it.

The process of putting a sample on a slide and staining it can change it, sometimes even if you’re careful. Things look desiccated if you dry them too fast; elongated and distorted if you compress the sample. The dye sits heavy in some places and doesn’t wash off completely. When I look at a slide, I’m not looking at a sample. I’m looking at a sample that I changed in some way. These changes can be misread if not careful, because once I make them, they blend right into that tiny world. They are artifacts of my actions, some damage left behind by the process of being examined.

I spent most of last week in bed. My GI tract felt like I had swallowed lava. I had abdominal neuropathy that felt like electrical shocks spiderwebbing out from just below my xiphoid process. I was tired, weak and foggy from the anesthesia. I slept a lot and watched Netflix and did work from the relative comfort of my bed. These symptoms are not really so much from masto so much as they are from the procedure. Anytime I have a procedure, anytime I take medication, anytime I change my life to accommodate my disease. It leaves a lasting change not from the disease itself, but from the treatment of it.  It leaves an artifact.

I have had several surgeries. I have had hundreds of imaging tests. I have had so many scopes I literally don’t know how many scopes I have had. Every day I take handfuls of pills, infusions, injections, push meds.   This week I am acutely aware of the damage I have sustained by virtue of being treated for my disease. My mast cell medications bring my already slow GI tract to a dead halt. But of course the alternative is that I don’t treat my disease – and of course that’s worse. Right? It’s worse, right?

I know it is worse. I know that I will never live safely without meds. I in no way mean to imply that I am stopping treatment. It’s just getting really hard to know what is from my disease and what is from the treatment. It’s getting hard to know all the ways I have been altered by the experience of living with mast cell disease.

I feel more and more the toll this constant need for medical care is taking on me. With my accessed port, my surgical scars, my ostomy,  I myself am becoming increasingly damaged by this process. I am becoming an artifact.

Lost in space

One of my most deep seated irrational fears is being lost in outer space. Being lost, alone, surrounded by this vast expanse of loneliness – that is the fabric of my nightmares.

“If you die in space, your body just keeps moving until something hits it. Then the pieces keep moving. It doesn’t decompose,” I remember my middle school science teacher telling me. My revulsion was immediate and visceral. It seemed so unkind that space didn’t even offer this last kindness, the ability to disappear and be forgotten. You would be all alone, with no chance of help, and when you die, your body will memorialize this helplessness and despair, forever.

It feels hollow and soundless when I think about space – the ultimate loneliness. Sometimes when masto is too much and I am tired of living in a world that isn’t safe for me, I hide in bed with my feelings, and they are hollow and soundless, too.

A woman I sort of knew killed herself this morning. She had a young son with mastocytosis, and I knew her in the way I know many masto parents – I answered questions for her. I knew very little about her or her family or her own poor health. But her death has started a larger conversation about support that I think needs to be had, and I think we owe it to this woman to have it now. Because even if lack of support was not the reason she ended her life, it is definitely the reason many people in our community have contemplated doing the same.

Let’s pretend that you, my audience, are healthy. Let’s pretend you don’t have any chronic health issues. You’re walking down the sidewalk one day, listening to music on your Iphone and get hit by a car. You are taken by ambulance to the hospital and are relieved to find out that while your leg is broken, you are otherwise okay. Your leg needs some surgery and a cast and you will be good as new soon. You have your surgery and you go home.

Except what if eight doctors looked at your xray and told you your leg wasn’t broken but you could feel the bones shifting? What if you couldn’t bear weight on it, if your pain was excruciating, but they insisted you were fine? What then? What if you went home and stayed off your leg until you could figure out why it hurt only to be called lazy and lucky to be able to stay in bed all day? What if your spouse was upset that your leg hurt too much to move around the kitchen and cook dinner? What if your family members told your kids that your house was dirty because you were lazy and making up the pain in your leg? And what if you find a doctor who sees something on your xray and agrees to work with you, but your family tells people this was all your fault for going for a walk that day or listening to music or being outside? What if the people around you not only denied your condition, but actively refused to support you? What if they made you feel guilty not being unwell as if your sickness was your fault?

This is what life is like for a lot of mast cell patients. I hear from patients all the time that their spouse doesn’t believe they are really sick. I hear that their mother told their kids that they are lying. And for parents of sick kids, I often hear that one parent won’t acknowledge or learn about their kids’ disease. It is discouraging and horrifying and dangerous. Because just like ignoring a broken leg won’t make it heal, pretending someone doesn’t have mast cell disease won’t make them any less sick. It will just make them more alone.

I’m fed up with watching people I care about struggle with family members, friends, coworkers, etc, who feel that acknowledging and accommodating their disease is too much to ask for. I’m tired of my friends crying for support when they are alone in the ICU, going into shock in their home, because their family members won’t help them. This is abuse. No one deserves this.

To everyone who has a chronically ill person in their lives: If you are not helping, you are hurting. When you tell us we are faking or being dramatic or exaggerating, you are chiseling off little slivers of our being that we will never get back. You remind us that we are not worthy of help and sympathy in your eyes. You force us to stop asking for your support, until sometimes it becomes too much. Sometimes when you scream for so long and no one cares, suicide can seem like a relief.

I am very lucky to be well supported now, but I know the pain of begging someone to take care of you. It feels like a great dark expanse, weightless, silent and endless.

 

Sorry not sorry – Why I’m calling out singer Natalie Grant

Saturday afternoon, a masto friend reached out to me.  She was upset about a Facebook post by a prominent Christian singer, Natalie Grant.  Ms. Grant posted the following to her Facebook wall on Saturday:
“Such a sweet time in Minneapolis at Women of Faith.  But now it’s on to LAX to continue filming the next episode of It Takes a Church.  And why yes, that is a battery operated essential oil diffuser that I’m using in my airplane seat.  Rocking the thieves oil and keeping the germs away.  And it’s helping the plane to smell much better #sorrynotsorry”
I groaned when I read it.  I actually groaned out loud.  I opened the thread to find mast cell patients commenting that oil diffusers can be dangerous for people like us, that they could trigger anaphylaxis. Grant’s fans argued that these people were just looking for something to complain about, that oils could never harm anyone, that you have to ingest a protein to have anaphylaxis.  The general spirit of their responses was that mast cell patients were just being oversensitive. 
That’s exactly right – but not the way that they mean.  Our bodies experience severe reactions to pretty much anything – and those reactions aren’t in our heads.  The fact that so many people commented that it was impossible for an oil diffuser to present a real health risk to others represents a serious danger to people like myself.  That is why the mast cell community found this so upsetting.
So let’s discuss why this is dangerous for people with mast cell disease.
Mast cell diseases are a group of disorders in which your body either makes too many mast cells, mast cells do not function correctly, or both.  Mast cells are the cells that are responsible for allergic reactions.  For normal people to have an allergic reaction, their body has to make a molecule called IgE that remembers it is allergic to something.  So people with peanut allergies have peanut IgE, and when they eat peanuts, the peanut IgE tells the mast cells to have an allergic reaction. 
People with mast cell disease pretty much skip this step entirely.  We have severe allergic reactions to things we are not actually allergic to.  This includes lots of foods, materials, environmental factors and others.  For some people with mast cell disease, these reactions include unpleasant symptoms that can be managed at home, like nausea/vomiting, skin reactions, headaches.  But some of us have severe, life threatening anaphylactic reactions based upon even very casual exposure to these substances.  These reactions require use of epinephrine (Epipens), IV antihistamines and steroids, and monitoring at the hospital to ensure that we survive.  People with severe mast cell disease can have several of these episodes in a year.  (I had three in 48 hours in May.)
To be clear: anaphylaxis can be fatal.  Mast cell patients are more likely to experience anaphylaxis and more likely to have severe reactions.  Our best protection is to avoid triggers and medicate appropriately, but this isn’t always possible.  Due to the rare and unusual nature of our diseases, there are few specialists worldwide so the vast majority of patients must fly to see them.  Hiding at home all the time with a mask on is both not practical and not an acceptable way to live. 
Every day, people with mast cell disease seek to minimize the damage to their bodies by avoiding triggers as much as possible.  In enclosed indoor spaces, this can be particularly difficult.  Once triggered, the only option is to medicate and end exposure to the trigger.  When flying, this is obviously impossible. 
While mast cell diseases are rare, fragrance sensitivities and asthma are not.  The CDC has stated that some risks of exposure to scents include asthma attacks, allergic reactions, headaches, migraines, sore throats, coughing, eye irritation, and other medical symptoms.  Asthma attacks can be triggered by fragrances in 72% of asthma patients.  Patients with multiple chemical sensitivity often have severe symptoms similar to those mast cell patients experience.  The fact that workplaces are gradually transitioning to be fragrance free environments is indicative of scent exposures negatively impacting the quality of life for many people. 
In an age of increasing allergies and allergic-type reactions, I find that people like me are often at odds with people who feel their personal liberties should not be curtailed.  Many people see this stand against the use of a personal diffuser as an attempt to impose the will of a suffering minority onto the population at large.  They are entitled to feel however they feel.  But as a mast cell patient, this is about allowing us to move as safely through the world as possible.  Is it worth feeling “infringed upon” to not use an oil diffuser in an airplane when it could kill someone?  Literally kill them?
Natalie Grant put up a follow up to the original post the next day.  While it initially looked promising, I was very disappointed.  It includes such gems as, “I am not here to argue about whether pure Young Living essential oils specifically, can harm those with this disease.” And, “I have a niece that is so allergic to peanuts, she can be in the front row of a plane and the person in the back row can open a bag of peanuts and she can go in to anaphylaxis.  However, EVERY TIME she flies, she has to inform the airline and flight attendents of her life-threatening condition.  May I make a suggestion to those who are suffering: be vigilant with airline employees.  DO not allow the plan to take off until the passengers have been informed there is someone on board who has a specific life threatening disease, so please do not use perfumes, lotions, oils, etc while on board the plane today.  No one will be a better advocate than YOU.”
This statement sums up exactly how much Natalie Grant is missing the point.  If I stood up in front of a plane and told people not to use anything scented, they would snicker and still use them because nobody believes we can actually die from a reaction to a scent.  When mast cell patients spoke up to point out that her use of an oil diffuser could be dangerous to us, we were mocked and shouted down.  We are advocating for ourselves.  The problem is that Natalie Grant, and her fans, just aren’t listening. 
And mast cell disease being dismissed publicly by someone with her sphere of influence?  Well, I’d venture my world is even a little bit more dangerous now than it was before Saturday.  So I’m calling her out.  #sorrynotsorry
A succinct presentation that sums up scent related health issues for the general public (along with list of references for above statistics) can be found here: http://www.slideshare.net/J_A_Miller/fragrance-sensitivity-awareness

How to get out of a reaction cycle

If you have mast cell disease, your basic arsenal for managing your disease should include elimination of/ avoidance of known triggers, low histamine diet, second generation H1 antihistamines and H2 antihistamines.  Leukotriene inhibitors, aspirin, mast cell stabilizers, steroids and anti-IgE are also possibilities for maintaining a baseline.
As a mast cell patient, a decent baseline is what you are going for.  A reasonable baseline does not always mean that you can live the same way you did before your diagnosis.  It means that you are somewhat functional on a day to day basis.  What this looks for is different for everyone, but I aim for not being in bed for 20 hours a day, not being in 5/10 pain every day, being mentally coherent.  Most importantly, you should not have to take rescue meds frequently.  If you need rescue meds often, then you are not covering your mast cells well enough with your regular meds.  If you have eliminated triggers, then this usually involves tweaking your meds. 
I’m going to give you my insights on what that looks like, but please keep in mind that any med changes should be discussed with your treating physician.  We are all different people and med dosing can be affected by many factors. 
Part of why mast cell patients are prescribed second generation H1 antihistamines is because they are usually not sedating, have little anticholinergic activity and are, to be honest, pretty safe.  Mast cell patients often take several times the recommended daily dose on medications like loratadine and cetirizine.  (Please note: the daily recommended dose for Benadryl, which is a first generation H1, should be respected – overdosing can have serious consequences.)  So while the average person may take one Zyrtec a day for allergies, a mast cell patient may take 3 or 4 a day.  The same is true for the H2 antihistamines, like ranitidine and famotidine.  It’s not unusual to dose very high on those. 
If you have uncontrolled symptoms on second generation H1 and H2, changing the meds to something else in the same class may help.  Sometimes Pepcid works better than Zantac, or whatever.  Some people find that using one Allegra and one Zyrtec works better than two Allegras.  Consider also that inactive ingredients can be triggering and thus decreasing the effectiveness of a med.
If you have screwed around with H1 and H2 meds and have increased doses, adding leukotriene inhibitors, cromolyn or atypical H1 meds, like promethazine or doxepin, may help.  If that fails, ketotifen helps a lot of people, and anti-IgE (Xolair) has benefited some mast cell patients.  Beyond this, you are looking at things like regular IV fluids, steroids, and less palatable choices.
As I mentioned before, having a good baseline means not using rescue meds regularly.  This is really important to feeling as well as possible.  Serious reactions take a while to recover from, even if they don’t need epi.  So if you’re having one every day, it is impossible to get to your baseline without serious intervention.  The meds used to control serious reactions, including Benadryl, can cause rebound reactions that look like anaphylaxis, but are not anaphylaxis.  Let’s talk about this.
Benadryl can cause rebound reactions for two primary reasons.  The first is because it is a very strong antihistamine and it stops histamine release symptoms really well.  One of the things Benadryl does is it stops mast cells from releasing histamine.  So when it wears off, mast cells tend to release a lot of that histamine at once.  Another release is that Benadryl has very strong anticholinergic action.  When your dose wears off, you can have what’s called “cholinergic rebound.”  This can cause headache, nausea, vomiting, diarrhea, brain fog and other symptoms.  Sound familiar?  This is why people feel “hung over” when their Benadryl wears off.  Second generation H1 antihistamines, like cetirizine and fexofenadine, have almost no appreciable anticholinergic activity so they tend to not have this side effect.
Mast cell patients get hit with the double whammy of sizeable histamine release at the same time as they get hit with cholinergic rebound.  So rebound reactions can feel like anaphylaxis, but they’re not the same thing.  If you take Benadryl every day, you are going to have a rebound reaction every day.  It may not be severe, but this is not uncommonly the culprit in patients who say they always get sick around the same time every day. 
Another reason why it is generally not recommended for mast cell patients to take Benadryl every day is because it can stop working.  This is called tachyphylaxis and it basically means your body gets used to it.  When you need to use epinephrine, you are counting on Benadryl and steroids to help control the effects of anaphylaxis on your body.  Patients in whom Benadryl is ineffective get into very dangerous situations when they anaphylax.  I have a few friends like this and it is seriously not pretty. 
It is possible for anaphylaxis to be biphasic or protracted.  Biphasic reactions are not common, but seem to be more common in mast cell patients than the general population.  (This is my personal observation.)  In these reactions, once the reaction is stopped with epi, you can have another anaphylactic episode of the same or worse intensity without a trigger.  This generally happens within 24 hours and is the original reason Epipens were sold in pairs.  In protracted (sometimes called multiphasic) reactions, this can continue to happen for a number of days.  I find in my personal experience that use of epi early is the best way to avoid multiphasic reactions. 
If you absolutely must take a medication that causes a serious reaction (by which I mean not a typical side effect), desensitization is usually recommended for mast cell patients as opposed to taking antihistamines with each dose.  This method really just suppresses the immediate symptoms, not the inflammatory response.  Drug reactions for mast cell patients can be serious and any reaction can escalate even when it has been mild in the past.  For patients who react to salicylates, but need to take aspirin, Dr. Castells has written an aspirin desensitization protocol that is frequently used.
Part of why people get into these cycles with rescue meds is that they often don’t understand why they are having reactions.  Mast cell patients need to keep careful inventory of their daily histamine level because things that may not cause reactions individually can cause a reaction when you have them all together.  For example, if you have a relaxing day with no stress, maybe you can eat a spinach salad.  But if you go for a walk outside in the heat, and you eat that same spinach salad, you may have a reaction.  This doesn’t just happen to mast cell patients – there are plenty of recorded instances of patients having allergic reactions to food ONLY IF THEY EXERCISED THAT SAME DAY.  This is because exercise increases histamine.  Heat increases histamine.  Eating increases histamine. Stress increases histamine.  Sex increases histamine.  So all of this histamine adds up.  So you may be able to drink a beer, or you may be able to walk two miles, but if you try to do both the same day, you may have a reaction. 
Of course, there is also an idiopathic aspect to mast cell reactions, which means that some people have symptoms for truly unexplained reasons.  However, I find these happen a whole lot less when you really track activities/histamine and try to eliminate triggers. 
Part of how I evaluate my “histamine baseline” for any particular day is by certain physical parameters that I refer to as my “mast cell dead giveaways.”  If these are present, I know I am already starting out as reactive and need to lay low and avoid histamine that day.  Allergic shiners, which look like black eyes, or dark circles under the eyes, are one for me.  Swelling in my fingers tells me I’m having some edema from mast cell degranulation.  The taste of metal in my mouth often precedes reactions.  Skin being more reactive than usual is a very clear indicator for me.  On a reactive day, squeezing my arm with my hand will make my entire arm turn red.  I take my blood pressure in the morning and if my whole arm is red or has hives when I take off the cuff, it is a clear sign to me to not take risks that day.  Any type of “cold symptoms” (cough, stuffiness, clearing of the throat, sore throat) and I have to assume infection, which contributes to mast cell activation and thus to your histamine quota. 
I have written before about how to manage mast cell reactions with medication, so please refer to that post for more details.
Keep track of your histamine inventory.  Learn the “dead giveaways” for your body so you can self check.  If you’re taking Benadryl every day for symptoms, it can often be resolved with increasing meds/ adding other meds.  Taking Benadryl every day should be avoided, especially because it causes rebound reactions that can mimic anaphylaxis symptoms. 

All one

I hug myself a lot.  It looks like I’m crossing my arms, but I’m not.  Sometimes it’s because I’m cold, but mostly it’s to self sooth.  I cross my right arm under my left and tap my fingers along my ribs.
 

A while back, I was reading something about integrative medicine that talked about your body storing emotion in certain places.  I remember running my fingers along the base of my skull and wondering if it was true.  I read more and it mentioned specific places associated with energy type.  It said that one of the places you store trauma is over your left ribs, right where my fingertips rest when I hug myself.  I immediately hugged myself and tapped there, to release the energy. 
I have become aware of this spot on my body in the years since.  It is a good barometer for my current emotional stability.  When I get upset, it’s like the muscles in this place remember my heaving sobs.  It gets sore, burning under my touch.  One of the ways I calm myself is by massaging this spot.  When I am very sad, I lie on my bed and listen to music and will my body to release its memory of trauma with my fingers. 
Last week, my massage therapist wanted to try myofascial release.  My lower back was really sore and she cupped it from beneath, her other hand on top of my abdomen, both of her hands still. Minutes passed and I could feel the muscles relaxing.  Just by touching, my body corrected itself.
“It reminds your body that it’s one,” she told me and it made sense.  My body does so many different things that it must be hard to remember that it is one unit, working together.  She massaged my head and then cupped her hands on my chin and neck.  After a little while, I started seeing things.  This was much clearer than the typical massage daydream or meditating visualizations.  It was people, places, events, with lines connecting them.  Everything was blue.  Bright blue.
After the appointment, I looked it up and found out that the chakra associated with that region is associated with the color blue.  It is also associated with spiritual drive and the element of ether.  I closed my eyes and everything was still blue. 
I read more about the chakras.  I knew this stuff once, my great aunt was very into this sort of thing.  I read about how the navel is the seat of the chakra associated with willpower and digestion.  I thought that was so interesting.  My willpower is a pretty serious force, even on bad days.  Is it possible to mess up one chakra thing because you overuse it for something else? 
I stopped eating solid food on Friday.  It has been hard mentally, but when I want to grit my teeth, I close my eyes and immerse myself in blue. 
On Sunday, I did yoga.  This was the first time in several months that it wasn’t a struggle to get through my practice.  I did yoga again on Monday.  And today.  It is starting to feel like it used to.  It is starting to feel like I am connecting the physical and mental and spiritual aspects of myself. 
I wasn’t bleeding today.  I am still very sore, but my swelling is starting to go down.  I’m not happy about the fact that the no solids is working.  I wanted something to work, but I didn’t want no solids to be the answer.  It has upsetting implications for the rest of my life.
But I have exercised for three days in a row and I’m tired but not exhausted and I haven’t thrown up in a few days.  That’s a lot of progress for me.  And I sort of feel like the no solids is part of it, but maybe this connecting to my mind and my spirit is part of it, too.  Maybe instead of struggling to fix my body, I need to teach my mind and my spirit that they’re okay living in this vessel.  Maybe if I can remind myself that we’re all one, it can help me heal. 
I hugged myself tonight and when I touched over my ribs, they weren’t sore.  When I prodded further, blue exploded behind my eyes and colored everything.

Get okay

Last week was hard for me.  I’m not entirely sure why it was so hard.  I got bad news, but frankly, I get bad news a lot.  Sometimes it’s harder for me, and I can’t always predict when those times will be.  It’s one of the weird aspects of chronic illness. 

I had a couple days of feeling sorry for myself, which I also need to do occasionally.  Sometimes I need to sleep a lot and complain and wallow in my unfortunateness for a bit.  This invariably leads to getting mad, and that’s just not a place I like to be.  I find that it’s okay to be mad about being sick in an abstract, transient way, but not as a state of being.  I’m not really a person who is angry about being sick, and I think I’m much happier for that fact.
Friday night, I came home from work and was exhausted.  I have been getting really into these MCAS/MMAS papers (which is great – I have learned so much and I’m super excited to share) and I have had a lot of work stuff happening and my brain was fried.  I decided it was time for some self care to head off a mast cell spiral from stress. I put out the (reverse?) bat signal that I wouldn’t be around for the weekend.
I had picked up a bunch of protein drinks and baby food purees to try, so I organized them and tried out a few.  I made some vegetable stock, baked some Red Kori and Carnival squashes and made a sweet Red Kori/ apple soup and a savory Carnival/ caramelized onion soup with a little grated cheese.  I heated up some cranberries and raspberries with sugar and lemon zest and mixed them with milk and yogurt for breakfast drinks.  I did all the dishes while I cooked, tasted everything and sang along to Ingrid Michaelson.  I finished the night with 10 mason jars full of no solids meals for the week.
I woke up Saturday morning to the smell of rain and the chill of autumn blowing into my bedroom.  Me and Story snuggled under my heated blanket and watched American Horror Story for a while.  I cleaned out my closet and cabinets and threw away/ set aside to donate lots of things.  I walked the dogs, did some writing and ate a lot of very buttery, very salty mashed potatoes. 
Today, I woke up really tired and sore, but for the first time in a very long time, I wasn’t nauseous.  I am still very swollen and my GI tract feels like it’s burning, but I am bleeding less.  I’m not enjoying this no solids diet but I have to say that it is helping.  I did some yoga and took Story for a long walk.  I hung out with the family and watched a movie and tried to just relax.
I’m feeling a lot more like myself.  I’d really rather not need biopsies and scopes and surgery, but you get what you get, and it’s easier to just get it over with.  In response to a post last week about how I had gotten bad news, a friend of mine told me to, “Get a plan – and get okay with it.”  It’s great advice and a motto for living with masto if ever I have heard one. 
So I have a plan.  And I’m okay with it.

The speed of falling apart

I saw my GI mast cell specialist today.  I have not been looking forward to this appointment.  I find that whenever the shit hits the fan with my health, it is always him telling me things I don’t want to hear in the small exam room at the end of hall. 

I am having major GI issues.  I am nauseous.  I vomit up most of what I eat.  I am reacting not just to food, but to the actual process of eating.  Beyond this, I have had a major change in lower GI symptoms.  I am bleeding from multiple places and spending a lot of time in the bathroom.  My abdomen is swollen and sore again.  If I lay back, I can literally watch myself digesting. 
We went through all my symptoms.  I told him about my endocrinologist appointment and filled him in on some conversations with my immunologist.  He examined me and palpated my sore abdomen, could feel that my colon was swollen. 
“Your problem is proliferation,” he said.  “If you started with two million mast cells, now you’ve got a hundred. Or more.”  I know.  I didn’t have anything helpful to add.  I really hate when I can’t pull useful more information out of my brain because it doesn’t exist. 
I already have a good surgeon, so he agreed to talk to him and get back to me on who wants to order what.  I will definitely need another colonoscopy with biopsies, at the very least, before they decide what to do for surgery.  He called my GI distress “incredible troubles.”  I laughed when he said it.  “Your troubles, they are incredible,” he clarified.  “A lesser person might not do so well.” But I didn’t feel like I was doing well today.  I wanted to go to sleep, quiet and numb, for as long as I could. 
I have said several times that this has been a strange year.  I feel like I can’t express what I mean by that properly.  While I have gotten sicker this year, I have at the same time found an increasing sense of peace.  I feel like I am helping people, and that was only possible because I am sick.  I learned about mast cell disease because I am sick, and I met all these people because I am sick, and I like this life, that I have because I am sick.  All of this is a side product of being sick. 
I skyped with one of my best friends tonight.  “I feel so guilty because I love what I do and I love all these people but it’s all because I’m sick and I don’t want to be sick anymore,” I cried to her.  I had a good long cry.  It was one of those days. 
But in the dark moments, when it feels like my soul is trying to swallow itself whole, I remember this year, and how as time goes on, I somehow feel less and less at odds with my disease.  I somehow feel the anger subsiding, feel this overwhelming calm as I learn how to live in this body each day. 
This year has been weird.  I am self actualizing at the speed of my body falling apart.

Worth

I saw a new doctor last week to address some hormone issues.  She had never heard of mast cell disease.  I gave her the run down succinctly: “The hallmark of my disease is anaphylaxis in the absence of IgE stimulation.  We can anaphylax at any time for any reason.  Some things make reactions more likely and we avoid those things when possible.”
Immediately upon hearing these words, she became uncomfortable.  She took some history and asked me what medications I took.  She looked over my test results and told me I should have IM steroids available in case of emergency.  When I told her that injections increase my risk of anaphylaxis and that I use IV meds to avoid that, she literally threw up her hands.  “Well, do you want the shot or not?” she asked crossly.  I told her I didn’t want it. 
She informed me that I needed several blood tests, which needed to be drawn first thing in the morning.  No one at the lab will draw out of my port and getting blood drawn results in several sticks and generally cause a reaction.  I asked her what I should do and she said, “Well, we’ll figure that out later.”  Which means that she doesn’t care enough to help me figure it out.
She had me get up on the exam table.  She listened to my heart.  “When you touch my skin, it may start to welt, that’s normal,” I told her.  “Oh, I’m not going to touch you,” she said dismissively.  I closed my eyes and felt my hands curling into fists.  She put her stethoscope away and ended the appointment.
I left her office upset.  I have been around the block with arrogant doctors.  They don’t really stress me out much anymore.  This was different.  This was not an instance of a doctor thinking they knew better than me how to manage my disease.  This was an instance of a doctor deciding that treating me effectively was more trouble than I was worth.  She decided that I wasn’t worth an examination.  She decided it didn’t matter if I got those tests because she didn’t care anyway.  
I live with this disease every day.  Most of the time, being sick isn’t the hard part.  Waking up every day and trying to believe that I am worth the trouble – that’s the hard part. 

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.