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.

 

Heartache

I stopped by my friend’s party tonight.  While there, several of us were discussing a couple living in town, one of whom is very sick and wheelchair bound.  “What’s amazing though is that she’s right by his side the whole time,” someone said.  “She won’t leave him.”

“That is amazing.  It doesn’t happen a lot,” I said.  Everyone who knew about what happened with my ex looked at me sympathetically.  It doesn’t happen a lot, and I am proof of that.

I drove by my ex-boyfriend the other day.  He didn’t notice me.  It seemed fitting.  It has been six months and I mostly don’t think about him.  When confronted with something that reminds me of us, I feel this overwhelming disappointment and sadness.  I was so wrong about him, and it is so disappointing.

I don’t miss him, and would honestly prefer to never see him again.  I can’t unhear our last conversation, his own vivid testimony to rationalizing leaving me because I was sick.   I can’t unfeel the moment when I realized that he stopped loving me because I got a colostomy. 

I miss the life I had.  I put a lot of work into it.  I felt safe in it.  It all vanished, so fast.  Every recognizable part of it was gone.  I was alone.  I was very alone.  That is the source of this lingering pain. 

There is this thing no one tells you about heartache – that it is physically painful.  There are days when it feels like my heart is necrotic, the death radiating outward, a chasm opening under my ribs where my emotions used to be.  But this pain – I love it.  It means it was all real.  Once it stops hurting, I think I will never again feel the way I did.  Once it’s gone, it will mean that I will never get any of it back.  It will mean I have given up. 

I deserve to be with someone who doesn’t make me feel guilty for living in this body.  But if we’re being honest, someone I was with for almost five years, someone who repeatedly told me he wanted to marry and have kids with me, stopped loving me because I was sick, and I don’t think that wound will ever heal.  No matter what happens in my life, there can never be a betrayal worse than this. 

On nights like tonight, it feels like the past is trying to drown me, a constant reel of memories playing in the back of my mind. 

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. 

Misfits

I have always been an outsider.  As a kid, I was a wicked nerd.  I read Star Wars books and was bored in school so I wrote fantasy stories.  I got moved to the smart class and people picked on me.  I wore weird clothes and mostly ignored people. 

I eventually started developing an identity through music.  I was a punk.  I am a punk.  And I belonged there, but there’s a caveat – it’s a subculture characterized by the fact that none of its members fit in anywhere.  It is a collection of misfits who like loud music and don’t belong anywhere else. 
I am fortunate to have a lot of close friends (who were also generally misfits in their younger years.)  But having friends is not the same as belonging to a community.  Like I have these friendships and I love these people and they love me, but there are some things about me that they can’t relate to.  Like being sick. 
When I found the mast cell community, I was ecstatic.  These were people who knew what I was talking about.  They knew about the weird taste I get in my mouth when I’m having a mast cell reaction.  They knew about the rash I get when I take a hot shower.  They got it. 
It’s hard though because once you find this community and you feel like you belong, when you can’t find anyone else who has had the weird blood marker you have or whatever, the loneliness you feel is swarming, engulfing.  It’s really not something I expected to feel again at this point in my life. 
There are a lot of things about my health that I keep off the general internet that would turn some heads.  In some ways, I am very different from most other people with mast cell disease.  While I feel that I belong to this community, it further reminds me that I am just never going to fit into a box.  I am always going to be an outlier. 
And you know what?  So are a lot of other people.  These diseases are so variable that it’s virtually impossible to ever find someone exactly like you.  The person I have found whose profile matches mine the best is 2 years old and calls her PICC line a tail.  She has a different type of mast cell disease than I do and has a disorder I don’t and I have a few she doesn’t.  So like I said.  It’s virtually impossible to ever find someone exactly like you.
My favorite thing about being a punk was going to shows and standing in the crowd waiting for the music to start.  You get this buzzing excitement in your head and your heart pounds and then when the music comes up, you’re screaming lyrics with a bunch of other people you don’t really know but who are your friends in that moment, and who don’t really fit in anywhere either but in that moment, you all belong together. 
It occurred to me tonight that the mast cell community is pretty much the same.  We are all medical anomalies who banded together under this spotted banner.  We are all misfits and sometimes for a little while, we belong together.