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Lisa Klimas

I'm a 35 year old microbiologist and molecular biologist with systemic mastocytosis, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Adrenal Insufficiency, and an assortment of other chronic health issues. My life is pretty much a blast.

Limitless


I didn’t sleep well last night, and when I opened my door to go to work, it was really hot out.  Over 90 degrees, sunny, stiflingly humid.  The very short walk from the car to my office left me flushed and sweaty.  I was feeling usual level nauseous and my skin was burny.  My PICC line insertion site is sore.  It was shaping up to be a rough day in the neighborhood. 

I had a meeting this morning and then another one late in the afternoon.  I needed to take Benadryl before the first one was over.  But I was tired of being that sick girl who had to reschedule a meeting again, so I sucked it up and stuck it out.  It wasn’t super comfortable, but some days my stubborn streak is just wide enough to make it work.

I worked in the office from 9-345.  I got a lot of things done.  When it was time to leave, the sky glowered down at me, heavy and ready to thunderstorm.  I walked to the train and by the time I got to my final stop, there was a downpour of biblical proportions happening.  I was wearing a sleeveless dress and somehow had to keep my PICC line dry.

I walked around the train station while I formulated a plan.  I eventually shortened the strap on my brief case all the way and then closed my arm into the briefcase.  I ran through puddles in high heels like a boss and I’m sure I looked ridiculous but my PICC line stayed dry. 

The dogs played for a while in the yard after I got home and for no particular reason, I felt victorious.  I worked almost an entire work day in the office.  I got myself home without paying for a cab in ridiculous heat.  Physically, the heat was killing me, but I made it home in one piece and in no apparent danger. 

On days like today, I think maybe there’s no limit to what I can do.  I think maybe even though it felt like it, there were never any limits at all.

Intersecting realities

It has been a long time since I had a good summer.   Several years, at least.  The last few years, I have said, “This summer has to be good, to make up for last year.”  They never were, though. 
Part of it is the heat.  I like the idea of summer, but the reality is that the soaring temperatures put me into a constant state of reactivity.  Part of it is history.  My cousin hanged himself in July of 2011.  It was a month I will never forget.  Whenever the air gets sticky, I think of him in his hospital bed, and me waiting for him to die.  In order to overcome the general physical difficulties and emotional entanglements of those sweltering weeks, the fun I have can’t just be good, it has to be fantastic.  So the bar set for summer fun is quite high. 
I was in the hospital when the weather started to turn warm this year, and I wanted to be happy that summer was coming, but instead I steeled myself for months of regret.  I always want so badly to enjoy it, but I inevitably find myself wishing it were over.
This summer has had a very surreal quality to it.  My health has been quite terrible.  I have been nauseous and bloated and bleeding and exhausted.  I have needed a lot of rescue meds, a lot of Epipens, a lot of IV fluids and push meds.  My aunt died very young after a brief, severe illness.  Someone very close to me stole from me.  My lows have been low this summer, to be sure. 
But I went back to Seattle this summer, and that trip was the truest expression of magic I have ever encountered.  We really caught lightning in a bottle for those five days.  The entire experience was otherworldly, in a way that I can’t properly articulate.  It was a beacon of love that I badly needed. 
And my cousin got married this summer, and being around people who love each other so much is inherently healing.  I will never forget how happy I was that day.  I am so grateful to have been a part of it, and as hard as it was on my body, it did wonders for my soul.
This past Wednesday, I went to a water park with two of my oldest, dearest friends, who are brother and sister.  We have known each other since September of 1988, when I met him at Catholic school kindergarten.  It was very, very hot and humid last Wednesday.  The combination of heat and sunlight is potent.   I took a lot of premeds and still felt sick for a good part of the day.  I was worried about my PICC line getting wet, under its Drypro cover. 
Late in the afternoon, we waded into the wave pool and for the first time in a year, I swam underwater.  Slipping under the surface washed all of the worry and fear away.  It was rejuvenating and wonderful.  I treaded water as the waves came and surrendered as they crashed around me.
When summer ends, I usually find myself mourning.   I would focus on the things I couldn’t do or the bad things that happened, all the ways summer had wronged me.  It is so easy to tally all the ways my body and the world failed me.  I would mourn the fact that it wasn’t better, and that once it ends, there is no chance that it will improve.  Those summers are permanently marred in my memory. 
This summer was different.  I found my soul again.  It feels very much like I pushed my hand through the veil that separates the worlds and found that sometimes I am living in all of them at once.  It feels like this reality briefly intersected with realities where I am strong and healthy, and I unknowingly walked through all the places where they met.  This living in several worlds at once is confusing and painful, but it is also empowering and truly magical.  I think it’s the only way to be. 
This year I’m not sad because my summer was miserable.  This year I’m sad because this summer was heartbreakingly beautiful, and like everything else in life, it ended much too soon.

PICC Lines

I talk about PICC lines, why you get them and what the risks are.  Tune back in later in the week when I show you how to access it safely, change the dressing and draw blood for labs.

In this clip, I say that PICC lines are “inserted in central veins.”  This should be “peripheral veins.”  Sorry for the flub.

 

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.

Early arrival

I like summer in theory.  I am always grateful when it’s not so cold and snowy anymore, but I quickly remember why I don’t like summer.  Even years before I knew why, I knew that it made me sick.  I spend a lot of it barricaded inside, with the relative safety of my air conditioner, but even my short trips outside cause trouble.  I have had to be driven to work most days this summer and often took a cab or arranged a ride home.  On days when I took the train, there was always the risk that I would throw up.  Heat is so hard on my body.  When I arrive home, I am sweaty and flushed and nauseous.  It’s not my best look.
The weather in Boston has been cooler than usual for mid-August.  Instead of blistering heat and high humidity, it has been high 70’s and breezy with clear skies.  It is like an early September, a gift to those of us who can’t handle the heat.  I have walked 3-4 miles outside each day this week.  Today, for the first time since April, I took the train both to and from work, then took Astoria for a long walk.  I sat outside as the sunlight waned and it was cool and blissful. 
Fall is easily my favorite season.  I like the symbolism of leaves changing colors and trees growing bare.  I like watching horror movies every night in October.  I like picking apples and going on hay rides.  I like haunted houses.  I like the coolness that creeps back into the air.  I like wearing sweaters and boots.  I like the smell.  There is no smell quite like New England in the fall.
Every year, when I wake up on September 1, I am relieved that I made it through the summer.  I often have fun during the summer, but I am always uncomfortable and exhausted.  I have to expend my energy carefully, lest I push myself too far and need weeks to recover.  In the fall, I take long, long walks, walk through the crowds of tourists in Salem, figure out a Halloween costume and drink my weight in Pumpkin Spice Lattes.  (Which I don’t react to – more proof that autumn is the universe’s gift to me!) 
People with mast cell disease are so often at the mercy of the elements, wind and water and sunlight.  But when summer winds down, I get these months of feeling good, of not being exhausted, of not flushing.  This is the one rule my disease has always observed – it gets to be unpredictable in every other way but this one.  Fall is mine. 
Maybe having mast cell disease sucks, but fall arrived in Boston two weeks early, and for me, that’s pretty damn great. 

Astoria

I have been trying to adopt a dog for several months.  There have been a few near misses, in which I was promised an animal, but they ultimately decided to give it to someone else.  The most recent was earlier this week, when honestly, I was not particularly in the mood to be disappointed again.  I have a really hard time when good things don’t work out because I look forward to them so much.  When I’m having a really bad day, I think about these things to convince myself it will get better.  So when it doesn’t work out, it is a serious let down.

Ten minutes after finding out I wasn’t getting the dog I was planning to adopt, I saw a new post on Craigslist.  It was a rescue group needing a home for a black lab mix that couldn’t stay in her foster home.  I sent an email saying I was interested.  To my surprise, the rescue group contacted me right away and wanted to set up a time to meet the dog.  I scheduled it and tried not to build it up too much in my mind.

I met the dog on Friday.  She is two years old and has very long legs.  She is quiet and likes to eat grass.  She is very snuggly.  Her foster father warned me that she would need some extra help with socializing and training because of all the upheaval in her life. 

“Would you rehome an animal because they were too much work?” he asked.

“I require a lot of extra work and I’m pretty glad my family didn’t rehome me,” I replied.  He told me I could have her. 

As we were walking back to our cars, I told him that I liked her name.  “I’m a writer, I think there’s some poetry to having a dog named Story,” I told him.

“Her real name is Astoria,” he answered.  I smiled.  Astoria is the setting of the 80’s movie The Goonies, one of my all time favorites.  She was supposed to be my dog.  I knew.

The energy boost you get from something working out just right cannot be underestimated.  Today, I cleaned my entire apartment, did all my laundry, ran errands, cooked dinner and lunches for the next few days, walked Harry, and took Astoria for a thirty minute walk with my friend and her small children.  I am very sore and tomorrow I will be exhausted but I am so happy. 

After playing with my meds recently, I am finally starting to sleep less.  I am sleeping mostly during the day, when I would rather not, but I’d rather ten inconvenient hours than the entire day.  I am still very nauseous, but I am throwing up less.  I am eating very small meals and having some success with that.  I have made some sacrifices in other areas (in particular, I am in more pain), but I am okay with that. 

I can deal with all the day to day bullshit if every so often, I get a big win.  Today was a big win.  I can ride this for a while.


Memory

I have this very clear memory that my mind revisits sometimes. I am jumping on a trampoline, holding hands, laughing.  The air is cool but the day is cloudless, the sun glowing and slung low in the sky.  I know I must be young because my hair is still blond corkscrews that stretch and wind as I jump.  

In my mind, this memory is synonymous with ecstasy.  I am weightless.  I am in no pain.  I am happy.  The vision is silent, like I’m watching it through a looking glass.  When I think about how I know it will all be fine, this is the memory my brain conjures for me, the one it plays behind my eyes. When I need to feel comforted and find peace, this is what my mind shows me.

This memory is an illusion.  I know logically that it’s false. We didn’t know anyone with a trampoline on a beach when I was that young.  I can’t remember whose hands I am holding because they aren’t real.  There’s no sound because it never happened.

I fell asleep at a decent hour tonight and woke up because my leg hurt.  Bone pain.  It had been better for months, and now it’s back.  It’s not a surprise.  We have been screwing with my meds, I knew my pain would be worse for a while.  It is prognostically meaningless.  It just means I’m still living in this body and it still has mast cell disease.

And I think, well, if that memory can feel so real and never have happened… then maybe this isn’t happening either. Maybe I’ll wake up now to my real life with my functioning body and all the things I have lost.

Your mind has incredible agency when it comes to protecting you.  It can shatter, solidify, suppress memories, rework them, whatever you need.  It really is a marvel.  

I think my mind built this memory from other true, good memories.  The trampoline is on Yirrell Beach, near where my cousins lived when I was young.  The dress I wear while I’m jumping is the one I wore in my first grade school picture. The sunlight, the salt I breathe in, the clear sky is every beautiful day I was ever grateful for.  There’s no sound because there’s no need to talk.  I have no worries, there is nothing I could need to know.  As for who jumps with me, it could be anybody.  It could any of the people I love and it would be an honor to hold their hands and celebrate together.  

I think my mind made this after I got sick.  I don’t remember when I started seeing it, but I know this last year I have seen it a lot.  I think my mind made it so that when things seem very dark, I can remember this and feel better.

I think this is heaven.  I think my mind is telling me that in many years, when I go to sleep and wake up healed and pain free, this is where I will be.

When I think too hard about this memory, I get this feeling in my chest that is reminiscent of nostalgia.  It feels like I miss something, but how can I miss something that’s not real? And if I went now, I would miss everyone here.  I never wanted to go.  

I only ever wanted to be here with the people I love.  Even if all of this is real.  Even if the rhythm is really the throbbing in my bones and not a trampoline.  

But I don’t think it is.  I think at the end of all of this, I will open my eyes and be weightless under that clear sky.  I think for now, I get to stay here with the people I love, and later, I will get to be free.

Mast cell allies

One of my friends from high school became a bone marrow donor this week.  He signed up for a registry a while back and got a call that he was a match.  Someone is going to get a new chance at life because he had the good nature to get swabbed and offer himself to someone in need.
Knowing that he did this moved me deeply, and not just because I know him and he’s a nice guy.  Anytime I see people donating blood or platelets, I tell them, “Thank you on behalf of the rare disease community.” 
We currently have a blood shortage in the US that is dramatic enough to require cancellation of many elective procedures in some cities.  Donors who are type O-, B- and A- are especially in demand. 
The Red Cross needs about 15,000 blood donations A DAY to sustain the amount used currently around the US.  Blood can be donated every 56 days and platelets can be donated every 7 days.  So if you’re looking for a way to help out the rare disease community, please consider donating.  You can visit redcrossblood.org for more information.
Anyway, this got me thinking a lot about how much people like me rely on the good nature and willingness of others to help us out.  These allies make our lives safer and easier, and they are truly the unsung heroes of the rare disease world.  People tell me that they are moved by my tenacity to live life, but my tenacity wouldn’t get me very far without the help of my family, friends and coworkers. 
So here’s a shout out to the people behind the scenes:
My sister, Kristin. I think that it’s harder to be my friends and family than it is to be me sometimes, and I think it’s probably harder to be my sister than anybody else. This past year has been one fast progressing mess and she’s always there to reassure me when my hair falls out and watch bad tv while I have a bowel obstruction. She brings me puzzle games when I’m in the hospital. Also, she has great hair.
My parents, Big Mike and Big Gail.  My dad drives me to work most days (I’m still not strong enough to take the train both ways without reacting) and deals with the general nonsense in my life for me, like getting my car inspected and dealing with my air conditioner when it’s not working right.  My mom listens when I complain about my life, hangs out when I need to use my Epipen, washes my dishes and is generally the best.  They make sure I am awake for                                                  the important stuff so I don’t sleep                                                     through my entire life. 

My cousins and extended family.  Just the fact that Matt and Jacqui just got married is enough to keep my mind good for a while.  In all seriousness, you guys drive me around, make sure I don’t get my PICC line wet and accommodate me constantly even when I’m sure                                                               it’s annoying.
My dog, Harry P.  Harry never judges me when I need to sleep all day or throw up a lot.  If I am not feeling well, he puts his face in my face until I feel better.
 
 
 
 
 
 
 
My friends, including, but not limited to, Alli, Cory, Margot, Alicia, Nichole, Ariel, Katie, Christina, Andrea, Tommy, Jimmy, Rob, Alyson and a whole bunch of others.  These people all know how to use an Epipen and do lots of things that make my life easier. 
 
 
My coworkers, who are amazing in the way they support me and make working largely from home possible for me.  I have never worked anywhere with this level of compassion and I feel lucky to work there every single day.
In the way that it’s hard for people to relate to us in our struggles, it’s important to remember that the people we love have their own struggles with our illness.  And even when it’s hard, they still love us and help us. 
So to all our allies, I just want you to know: We notice you.  We appreciate you.  Thank you.
Seriously, though.  You guys are killing it.

Boundaries

Alright, guys.  I need to draw some boundaries.

I am pretty straight with you guys about my life and my health.  There are some personal things I don’t share.  I don’t feel that I should have to exchange my right to privacy because I write a blog where I answer questions about mast cell disease.
Being as the mast cell community is fairly small, a lot of us know each other.  Mostly, we know each other online, which means that we often don’t have a complete understanding of the other person’s life and illness.  There is a tendency to compare ourselves to each other, but this is inherently problematic for a bunch of reasons I don’t need to rehash.
I found out this week that a patient was upset that one of my providers wouldn’t let them do X thing and complained that it wasn’t fair because they know Lisa Klimas is allowed to do it.  That really irritated me for several reasons.  I don’t feel that it is appropriate for people who aren’t my health care proxies to talk to my providers about my care.  If you want to tell them you read something on my blog, or tell them you know me, that’s fine.  But when you are trying to include how I manage my healthcare in a conversation with one of my providers, it’s not acceptable.  So don’t do it. 
When you belong to a community like ours, we often develop a sense of intimacy with each other very quickly.  In the real world, you develop intimacy alongside trust and mutual respect, but this online world of mast cell bonanza tends to move faster than that.  What that means is that, unfortunately, not everyone understands the responsibility that comes with knowing this intimate information.  Some people prove themselves to not be trustworthy.
I like answering questions.  I like helping people if I can.  I like writing this blog.  You are not bothering me by asking me questions.  But in the last couple of months, there have been a few instances where I have felt people were trying to take advantage of me.  One person sent me a question in a Facebook message while I was in Seattle and then sent me a second angry message when I didn’t answer their question quickly enough for them.  There have also been multiple times in the last month or so when I was publicly demeaned by a person online only to have them want me to answer their questions afterward. 
Please keep in mind that I am a person.  A sick person.  I am happy to be a resource for people with mast cell disease and I don’t mind researching topics or whatever.  I like doing that stuff.  But if you are going to expect me to help you, you can’t treat me poorly.  I don’t need anybody to kiss my ass, I’m just looking for general courtesy here.  A lot of people can attest to the fact that I don’t mind answering questions in the middle of the night or calling people to explain things in detail.    I don’t mind doing these things.  I just don’t think I should have to do that for people who call me names.  I don’t think that is too much to ask. 
I’m going to be more vigilant moving forward about the information I share in the forums as pertains to my own care.  I didn’t “get in trouble” or anything, but frankly I find the whole exchange of “but you let Lisa” to be really creepy.  It’s not something I want to happen again, so I’m drawing some boundaries. 
Please believe me when I say that it’s fine to ask questions and request blog topics.  I hope you guys understand where I’m coming from on this.