Things Make So Much Sense

So, I’m sitting here in my bed, not sleeping (surprise surprise), and I started thinking about this disorder.  It affects EVERY SINGLE SYSTEM in my body.  So I’ve been thinking of the different things that have happened in my life, and so many things are adding up.  When I was 12, I did a cartwheel in my front yard and did something to my wrist.  Don’t know exactly what happened, but it was sore and inflamed for weeks after it happened, actually requiring physical therapy to get it to gain the strength again.  Inflammation is the leading symptom of MCAS.  My joint was inflamed and didn’t have the right stabilizers to fix itself.  I’ve had abnormal pap smears come back–I’ve recently found out that MCAS can cause these.  I’ve had chronic mono…the MCAS kept it from remission and the two disease kind of fed each other, making me as sick as I’ve been for the past 2 1/2 years.  It’s insane that this disorder is so powerful, yet nobody really knows anything about it.

Dr. Afrin was telling me that the disorder tends to work in stages, often triggered by some kind of trauma, whether it be physical, mental, or even emotional.  (So you hear that???  No causing stress in my life!!!)  I can tell you the events that caused everything.  I’ve had this disorder my entire life, and I’ve had symptoms my entire life.  I was constantly sick as a child (and even as an adult) and usually needed at least 2 or 3 rounds of antibiotics to kick whatever illness I was fighting at the time.  This is all completely normal for an MCAS patient.  And it held steady for a while–until I turned 13.  When I was 13, I broke my finger, broke my arm, tore up the ligaments in my knee, had to have surgery on said knee, Grandma moved in with us, I moved in with my brother, and then we moved houses all within a year.  That’s a lot of stress on any person, let alone someone who cannot handle stress.  I stared high school and marching band and less than a year after, I developed my latex sensitivity.  All of that stress made my disorder jump in severity.  It makes sense when you think about it!  All through high school, I had to deal with those anaphylactic reactions, multiple ER visits (usually once every 4 weeks or so) and my body was exhausted.  My junior year, Grandma moved out of the house.  It was hard to say good-bye, because I knew that I would never see her again.  I was a real Grandma’s girl, so it was especially hard.  6 months to the day, we held her funeral.  About a month after the funeral, I developed a migraine that lasted for 7 weeks straight.  I truly went from “what school am I planning on going to” to “am I even going to graduate?” and even to “omg is this a brain tumor?”  It was terrifying.  I missed a ton of school, I was too tired to do anything, and I could barely sit in a dark room with a tiny bit of light.  It was too much pressure for my head.  Little did we know that this was caused by a sinus infection in a tiny sinus right behind the eyes.  This tiny sinus was so inflamed (inflammation!!!) that it was pushing on my brain, causing the reactors to send out migraine impulses.  It was only with a few rounds of antibiotics that we were able to get the inflammation down.  The headache itself didn’t go away for almost 4 months.  There was a step up in that.  Then, when I was 19, I had some surgeries that went wrong.  I rejected the particular suture (PDS sutures) that my surgeon had used, and all of my incisions ripped open.  I ended up having to have 7 surgeries by the end of everything.  I fought a staph infection, and had something called a dystonic reaction–a reaction where you lose control of your muscles and they contort into weird and uncomfortable (and scary) ways.  Another step up.  That’s when I began to become sensitive to chemicals.  I’ve never been able to handle bleach.  It’s always caused my chest to constrict and make it hard for me to breathe.  But I began to become sensitive to other chemicals as well.  In 2014, I had 2 extremely severe allergic reactions within a week of each other, and then caught pneumonia.  That right there was enough to cause another step up in the disease, and caused the chronic mono.  Since fighting the chronic mono, I’ve become sensitive to so many different things–things I’ve never had any issue with in the past.  It’s terrifying that I’m becoming so sensitive to SOO many different things–I cannot help but wonder what is going to be next?  So that’s another step up.

It’s amazing how well he knows this disorder.  After telling him everything he just looked at me and nodded.  Fantastic man.  Truly.  But sitting here thinking, so many different things have begun to make sense.  It’s nice to finally be able to say “oh THAT’S why my body did that way back when” instead of chalking it up to the body just being weird.  It’s so nice to finally have an answer after searching my whole life.  It’s nice to be understood.  It’s nice to be able to say “Why do I do this?  Why it’s because of this weird disorder that was really discovered about 10 years ago.”

If there are any people thinking of going to medical school, think about specializing in MCAS.  Trust me–you’ll have a ton of patients, learn more than you’ll really want to know in your lifetime, but you’ll get to help all those people.  The more people learn and understand about this disorder, the better it will be.  All the people who don’t know what is going on with their bodies could finally have an answer.  It’s my purpose to help these people…to be a voice for the millions of people who have this disorder (it’s an epidemic in the USA…probably the world) and don’t know it.  To be the voice of the people who are so sick and tired of fighting with doctor after doctor who throw their hands up and say “I don’t know.  I can’t help you.”  That isn’t going to be acceptable anymore.  I demand answers, and everyone else out there should too.

And I’m down off my soapbox.  ☺

As always, all my love,
Kristina♥

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Dr. Afrin is fantastic!

So today was my visit with the fantastic Dr. Afrin.  What a fantastic man.  He sat down and wanted a play by play of my entire health history, no matter how mundane the event.  He spent so much time with us, it was great!  It is so nice to go into a doc and relay your symptoms, and have them actually LISTEN to you.  He understood what I was going through.  I can’t say enough good things about him.  He did say that he wants me to do some extra tests, which can be done at home, and we’re going to start meds one at a time until we find the one that works for me.

I cannot tell you how worth it it was to travel out here.  He has stumbled upon a goldmine of a disease, and cannot wait to keep doing more research.  I’m coming back in 6 months to see him as a follow up.  I can’t wait to come back!

The snow has started out here, while at home it’s 70*.  I want to feel it!  I miss my boys.  I miss my bed.  🙂

Mom and I are leaving tomorrow to come home.  We’re taking 2 days this time so that my body can handle it.  Thankfully.

Thanks for keeping me in your prayers.  I appreciate your love more than you know!

All my love,
Kristina♥

OFFICIALLY IN ST. PAUL!!!

I seriously cannot believe that this day is here.  I called in January for this appointment, and it’s here.  Today, we left Michigan at 6:30est in the morning, drove all day, and arrived just around 4:45cst for a total of about 11 hours in the car.  We drove through fog thick as pea soup–seriously you could barely see the road ahead–for about 2 hours, then finally the sun came up and burned the fog off.  After that it was a GORGEOUS day to drive.  Sun was shining, not a cloud in sight, with fantastic temps.  We made fantastic time too.  I was so happy to get out of the car when we got to our hotel.  My body had had enough at about the 10 hour mark.  I started to swell, flush, and itch.  When we got into our room, the air conditioning wasn’t working, and it felt like it was boiling in the room.  My face got so red I was in tears because it felt like it was just on fire.  I thankfully was able to get a wet washcloth and cool my face down with some water–but it was so uncomfortable.  We finally got the room cooled off, ate a little dinner, and I fell asleep very quickly for a short nap.  It was a good day, and I’m just glad we don’t have to drive very far for the next few days.  ☺

Tomorrow Mom and I are going to the Mall of America.  I am so excited.  I love malls, and this is a mall on mega steroids haha.  I’m going to walk in with my mask on, because I don’t need any issues and don’t want to ruin some fun we can have.  Definitely going to the American Girl Store.  I’m getting a new doll because I’m secretly 7 years old still.  I don’t know what else we’re going to see while we’re there–it mostly depends on me and my body and how I feel.  Oh well.  I’m getting my doll.  😉

So that’s pretty much it today.  I’ll have pictures and more tomorrow.

Love you all!!!

As always, all my love,
Kristina ♥

I may not agree with you, but at least I respect you.

So.  This election.  It happened.  I’m upset with the results.  Why did a misogynist, racist, sexist, horrid human being win over a polished woman?  Who knows.  I may not understand those who voted for him…but I do respect you for doing what your heart and gut told you to do.  I may not agree, but it is what it is and let’s hope for the best.  I have a problem with what happened to me tonight.

I always try to see the humor in hard situations.  Whenever I’m in the emergency room, you can find me cracking jokes, flirting with the doctor or nurse (if he’s cute) and playing games with my mom.  Why freak out?  The problem is still going to be there and it’s been proven that laughing adds time to your life.  So, I like to laugh.  I made a comment on Facebook saying, “Next summer, President Trump is proud to present the first annual Hunger Games!”  Now, I KNOW it’s not going to end up that bad.  But.  With my satire, I’m making a point that it’s not going to be this utopia that people who voted for him think it’s going to be.  The major thing I’m worried about is my healthcare.  He says he’s going to destroy Obamacare; a plan that guarantees healthcare insurance to everyone, and nobody can be denied because of a pre-existing condition.  With that safety net, I don’t know if I’ll be able to continue my treatment, which keeps me alive.  So without going into all that, I made a joke.

Someone decided he didn’t like it.  I don’t even consider him a friend–he treated his girlfriend (one of my best friends) like trash not even 6 months after she had their baby.  I don’t trust him one bit.  But.  He decided to comment about how Hillary is this criminal and she deserves to be in jail and blah blah blah–your usual Trump supporter crap.  I told him no.  There’s been no evidence of her doing anything wrong, yet people won’t give up on it.  I also told him that this is my page and I can write whatever I want because I’m allowed to have whatever opinion I want.

He got NASTY and totally crossed a line.  He decided to, not only insult my intelligence by telling me that I’m wrong, but he insulted my illness and threw it in my face with the comment, “Did you even get out of the house to vote?  Or did the burning leaves keep you locked up, Miss Sensitivity?”

I cannot tell you how angry I was…am.  How dare you attack me like that?  For something that is so far out of my control, it’s not even funny.  I’m already stressed because of the healthcare worry; but to add to it by throwing my illness in my face?  NOT OK.  I was working myself up because of this–I normally can keep a fairly cool head when it comes to my body and issues I have to deal with, but this crossed a line.  I was shaking I was so angry and upset.  My blood pressure raised at least 25 points (I didn’t measure, but I could feel my blood boiling) and I began to react.  I’m already having issues with my body with the leaves, smoke, stress, etc…; so to add to it pushed me over the edge.  This happened around 8:30ish.  I just had to take more Benadryl because I’ve broken out in hives all over.  I know this is the cause, and I’m so far beyond frustrated.  Who kicks someone when they’re already down?  Wanna know who does?  A coward who is afraid to let anyone else have an opinion of their own.  Someone who thinks like Donald Trump–someone who doesn’t want women to have a thought in their pretty little head…just get dinner done before I get home and you’ll be happy because I’m happy.  It’s ridiculous.

So, while I wait for my Benadryl to kick in, I’m trying to calm myself down.  I have a puppy in my bed, finished one book…started a 2nd, watched a movie, and am about to play a mindless game.  I can’t let it get to me, but when it’s about my health, when I’m already so upset over the things I’ve lost, I get pushed over the edge.

So that’s my rant.  Thanks for letting me vent.  I love you all!  And like I said, I respect each and every one of you for doing your civic duty.  My side lost…America truly lost…and I pray that our newly elected incumbents will do well…but we need to band together and make this country strong again.  I love you all, despite differing (and wrong ;D) opinions.  In the words of Ellen DeGeneres, “Be Kind to one another.”

All my love,
Kristina ♥

18 days…just 18 days…

18 days…that’s all that’s standing between me and Dr. Afrin.  I seriously cannot wait to get there.  It’s so close, I can taste it.  And yet, I find myself having a harder and harder time lately.  I’ve been having a flare up of all sorts of symptoms for a while–everything from joint swelling, extreme fatigue, hives, and even my voice disappearing from the inflammation in my throat.  I’ve dislocated my shoulder twice in the past two weeks (after you do it once, it’s easier and easier to do) the most recent being tonight after I was laying on it while trying to sleep.  I rolled and apparently the shoulder didn’t want to roll with me.  I hate how easy it is for my shoulder to pop out…but it’s just another part of this FABULOUS disorder.

The past few nights have been super stressful for my body.  2 nights ago, I got into an argument with someone and discovered a new trigger.  Arguments!  I broke out in hives and then began to have a panic attack.  My body can’t handle any kind of stress.  So what do I do?  Stress about not stressing.  Ironic?  So I took my meds, which make me sleep…managed to stay awake, albeit in a zombie like state, and then be so restless that I lay in bed for hours until I can actually sleep!  Today, Halloween–a holiday I absolutely love, I was supposed to go out Trick-or-Treating with my best friend and her little ones.  But my body decided to say “ha screw you!  You know better than to make any plans in advance!” and I ended up sleeping most of the day.  And even with all the sleep I got, my limbs are heavy, to a point where carrying a plate is hard.  I feel pathetic.  I feel like my body is giving up on me.  I feel like there should be more that I can do to make my body cooperate–and yet there isn’t.  So, I stayed home in some scrubs to feel like I was at least a little dressed up.  I helped hand out candy until I smelled bonfire, and had to immediately take my meds.  My voice was gone before anyone else could smell it, and I had to barricade myself in my room in order to keep the smell out.  I broke down in tears.  One more thing that I love, taken away from me.  I don’t know why I bother to get my hopes up anymore–my hopes and dreams are always slashed and I’m left in a pit of despair.  I’m not asking for sympathy; I’m not asking for your pity.  I simply want this story to be told.  To look at me, I look perfectly healthy (minus the dark circles under my eyes)…if only you could see the war my body, mind, and emotions fight on a daily basis.  You’d be amazed to see how strong I really am.

I’m so beyond frustrated.  I try my hardest to see the good in all situations, but it’s becoming a more difficult game.  I find myself growing more sarcastic and I can physically feel my heart growing harder and harder.  I have started to push people away.  I pick arguments with people.  I hate to see me going down this path–but I honestly don’t know how to stop it.  I am doing all that I can to stay above water, and yet it’s not working.  I’m drowning in emotion and frustration.

The only thing really keeping me going is the light at the end of the tunnel–the end of the tunnel that will be reached on the 18th.  Who knew Minnesota could hold such secrets and answers.  I wish this disorder on nobody; nobody deserves to be going through the hell that I’m currently traveling through.

Keep me in your prayers and well wishes–I could really use them right about now.

All my love,
Kristina