I used to love Autumn…

Hi Everyone!

This season used to be one of my favorites.  I loved the smell of autumn leaves, bonfires, and cinnamon.  I loved wearing a hoodie and jeans and sitting by the fire; whether it was with friends, with my family, or alone when people would go inside.  I loved the smell.  I was so excited when I was 13 and we moved houses and we got to move into a house with a fireplace!  Only for my excitement to be replaced by disappointment when I realized it was gas logs and we wouldn’t get that amazing fire smell.  I loved walking into a craft store and would smell the cinnamon scent that covers everything crafty around this time of year.  I loved the smell of the leaves when you walked outside and knew it was fall.

Now, everything has changed.  Anytime I smell any kind of smoke, I immediately need to put on a mask and get out of the area as fast as I can.  My body has started to react to different things, that I can’t even be in the same area as the smoke because it gets on my clothes and on my skin.  I break out in hives with the smallest of things.  What really sucks is that the temperature is finally great enough to open the windows; until someone decides to start a bonfire in the neighborhood and we need to close all windows.  Just tonight, I was going to go outside and help my mom pick up the “presents” from the dogs, and I smelled something and immediately had to go back inside.  It’s so frustrating to know I can’t leave my house sometimes because of smells.  It’s isolating too–people talk about having a bonfire at their house, and I’m like, “well, I wish I could be there…but your bonfire could potentially kill me.”  They’re all understanding, but it still sucks.

With regards to the cinnamon smell, it sent me to the hospital last time I visited JoAnn Fabrics.  The smell was so overpowering that it closed my throat right up.  I tried to treat it myself with medication at home, but it wasn’t enough.  This ended up being my worst anaphylactic reaction I’ve ever had.  I Epi’d myself and got to the hospital, and in the 20 minutes between home and ER, my voice had already started to disappear again, and the nurse could see how swollen my throat was just by looking at it.  I’m normally pretty calm during a reaction, but this time was different.  It was pretty scary.  Thankfully, the ER staff was FANTASTIC.  I can’t say enough good things about them!  I talked about them in a past post.  But seriously.

So with regards to the leaf scent, I’ve always had allergies to the mold on the leaves…but it’s gotten so bad.  Hives allll over.

I cannot get over how crazy this disorder has become.  It’s so violating.  It’s taking everything I enjoy.  A couple Saturdays ago I went to a bridal shower.  I had helped plan some of the activities and I was really excited that I was going to be able to go to this!  And then someone walked in wearing perfume.  And I’m not talking just a dab here and there, but I think she bathed in the perfume.  It was so bad.  It took one sniff and my throat immediately started to get tight.  I burst into tears.  One more thing that I enjoy that’s taken away.  Thankfully, it was a gorgeous day and I was able to sit outside, but I missed EVERYTHING.  The family who was throwing the shower is family–chosen family–and they felt absolutely horrible; they kept blaming themselves for my reaction.  In reality, it’s nobody’s fault.  The mother of the groom is one of my mom’s best friends, and her kids (she has 8!!!) are pretty much family.  The girls took turns coming out and sitting with me, which made me feel really good.  I had to take a ton of meds to keep my throat open, but I managed to stay awake and enjoy snuggling with their dog who was going to be shut away from the party.  I was pretty spaced out–almost stoned–but I was able to stay, which was my main goal.

I cannot tell you how much I have to mourn the different things that I like to do and care about.  Thankfully, I’m able to have fun doing whatever I can…it’s just a very specific kind of fun.  So, with regards to fall, I loved you.  Now, I just want you to end.  I can’t handle this.  In reality, I can’t handle any Michigan weather–I react to Heat, cold, humidity, and the sun.  The perfect place for me is a place with mild summers, mild winters, not a ton of humidity, and enough shade to keep me safe.  I’m thinking the Pacific Northwest is a good place for me to live.  We’ll cross that bridge when we get there.

Keep me in your prayers!

As always,
All my love,
Kristina♥

2 Most Annoying Symptoms

Hi everyone,

So, I’ve told you a little about this disorder, and the frustrations that it gives.  But tonight, I’m going to tell you a little about the 2 most annoying symptoms.  For me, those are fatigue, and forgetfulness.

I cannot tell you how tired I am.  To walk to the bathroom is a challenge.  To shower and actually get dressed is almost a miracle.  I do work–I babysit, and the days I work are long.  I love what I do.  I love my kids.  But my body is simply exhausted.  I don’t know what else I can do to stay awake at this point.  Coffee doesn’t help.  Caffeine from a pop doesn’t do anything…I simply need a small nap during the day just to keep going.  (Sorry Danielle!)  But seriously–on a normal night, I sleep anywhere between 10-13 hours of sleep.  It’s a lot.  And that’s on a night when I’m not utterly exhausted.  On those nights, I sleep around 18 hours.  It’s ridiculous.  But here’s the thing: my body creates a chemical which is basically the anti-Melatonin and it keeps me awake through the night.  I cannot tell you how frustrating and lonely that is.  I barely sleep at night.  I’m awake until 3, 4, and sometimes later for a variety of reasons–restlessness, not being able to get comfortable, pain, itchiness, and sometimes I even will be exhausted until my head hits the pillow and will stare at the ceiling for a few hours until my brain finally decides to shut off.  Not only does the exhaustion figure into my mood, but my body feels exhausted.  There have been times where lifting my arm to scratch something on my head felt like I was lifting at least 50lbs with my one hand.  I don’t understand why this happens so much.  It’s this damn disorder and I seriously cannot wait for there to be a cure!

There are some people who don’t understand the fatigue and how exhausting life is.  I have lost friends because I cancel plans a lot.  I will never know how my body is going to react to a certain day until that particular day.  I can make plans with people until I’m blue in the face; but if on that day my body says “hahaha sucks to be you” I have to listen.  My body controls everything.

So, something else that is frustrating is that I can’t remember shit.  I have been told that I have the same conversation with family and friends 2-3 times a day.  I don’t remember mentioning it the first time, let alone the 2nd or 3rd.  It’s so embarrassing to have the same conversation, and have people look at me like I’m crazy or have a 2nd head growing out of my neck.  Or, people will ask me a question or ask me to do something.  I’ll totally hear it.  And it’s promptly forgotten.  “Kristina, will you unload the dishwasher?” “Sure, let me finish what I’m working on.” ……. And it’s gone.  Yeah.  That’s happened so many times it’s not even funny.  I hate it.  I hate having to be reminded of things that I KNOW I’m supposed to know, and yet don’t remember.  But with other things, I can hear it once and have it memorized.  Give me a piece of music?  I’ll play it by ear for you.  Tell me stupid, random trivia?  I’ll remember it for next time.  It’s so irritating to not remember anything, and yet be able to pull up random facts.  I would rather trade the random facts for being able to remember anything.  I really would!

Anyways, that’s it for tonight.  I’m done complaining…for now.  Keep me in your prayers that I don’t go more insane than I already am.

All my love,
Kristina ♥

Complications

So, I mentioned that MCAS is a blood disorder.  What I didn’t mention is that there are so many different disorders that run co-morbid with MCAS.  Today, I’m going to talk about one of them.

EDS, or Ehler-Danlos Syndrome, is a connective tissue disorder.  Basically, your connective tissue, skin, ligaments, tendons, etc are super stretchy and cause major issues.  You also have such an easy time of bruising.  Any small bump could cause a huge bruise.  There are days where I wake up with a huge, purple bruise and have no idea where it came from.  That’s the EDS.  It runs along with MCAS because when the mast cell releases it’s chemicals, one of them is heparin, which is an anti-clotting chemical–essentially that’s what causes the bruising.  It’s a pain, but it’s something that we have to live with.

For me, I’ve dislocated my shoulder twice now (in the past 9 months), sprained my ankle more times than I remember, sprained my wrist quite a few times, and even tore my ACL when I was 13.  And it’s frustrating, because any little injury could blow up and cause an even bigger injury.  I’m frequently on crutches for no apparent reason.  I have braces for 4 of my joints: thumb and wrist, knee, ankle, and a sling for my shoulder.  I’m in constant pain.  And there’s literally nothing that can be done for it.  I’ve tried all sorts of stuff–ice, heat, tylenol, hemp oil, narcotics…I’d try NSAIDS but they’re a known mast cell trigger, so I’m going to avoid them at all costs.

I hate feeling like I’m going to break at any moment.  I woke up today, and my shoulder felt like I had dislocated it somehow.  I looked at my shoulder, and it’s bruised black and blue, and it has the same weakness and pain that it had when I dislocated it in the past.  I grabbed my sling (I’m going out tomorrow and getting a more comfortable one because this one just hurts my neck) and am keeping it immobile, but let me tell you–the pain is so bad I’m laying in bed with tears.  I’m so frustrated with everything.  I’m trying my hardest to see the light at the end of the tunnel, but let me tell you–it’s really getting hard.

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This quote really helps me get through the day.  With everything that I’ve been given, I must have a huge destiny coming.  Keep me in your prayers. ♥

All my love,
Kristina ♥♥♥

Heartbroken

Hi everyone,

I’m absolutely heartbroken right now.  One of my fellow Masties past away today.  I’m so upset about this.  I’m kind of feeling numb.  She was one of the most positive, informative people on all of my support groups.  It’s reasons like this that we NEED to find a cure for any kind of mast cell disease.  It’s not right that someone can just disappear on us.  I’ve told you that anaphylaxis is one of the leading symptoms of this horrid disease.  It can happen in an instant.  So not only do WE need to pay attention to our bodies, but the people around us who love and care about us need to pay attention.  If ANYTHING seems out of the ordinary, you need to get it checked out.  If you don’t, it could be the last mistake you ever make.  Awareness needs to be brought.  This can’t go on.

And then there are Epi-Pens.  Literally, our life saver.  I’ve had reactions in the past where I’ve needed to use 2 Epi’s in order to keep breathing.  And then STILL needed more drugs once I got to the Emergency Department at the hospital.  The pharmaceuticals need to understand that the Epi-Pens aren’t just a money maker–they’re the difference between life and death.  The price of Epi-Pen is absolutely ridiculous to a point of laughable.  Seriously…$800 for 2 Epi-Pens when they sold 5 years ago for MAYBE $100?  This can’t go on.  WE need to take a stand.  Mylan, shame on you.  I hope Congress makes you give back some of the millions of dollars you have earned over the past few years to the people who really need the money.  Thankfully, my insurance covers the price of my Epi-Pen in full, but I pray for those who don’t have a good insurance company–that makes them pay for their life-savers in full.  I can’t imagine having to choose between food and my Epi-Pen.  Not ok.

So, Ginger, I will miss your messages of wisdom and courage.  You were a strong woman.  I only hope that you’re out of pain, and can help guide the rest of us from above.  My heart hurts because you’re gone. ♥

All my love,
Kristina ♥

Hello!

Hi everyone!  My name is Kristina.  I’m 27 and I happen to suffer from the disorder, MCAS.  I have a brief description of MCAS on the About page, with a website you can reference if you’d like to learn more.

I’m basically going to be talking to you all about how MCAS affects my daily life, different triggers, and how I feel about it all.  My life is a roller coaster of emotion.  So, hang on tight!

♥Kristina