New Year New Me? Yeah, Right.

Hi everyone,

I was really hoping that I could be all “hey guess what!  I feel better!  This disease has gone into remission, and I feel like myself again!”  But that’s so far from the truth, it hurts.  I’ve been having such a hard time lately–my body doesn’t want to cooperate.  I’m reacting to more and more each day, with most days not knowing what’s causing my hives.  My doc is not being helpful in the least, but I should be getting more test results in the mail soon.  I’m genuinely nervous that these results aren’t going to show anything.  We all know that this is what I’m battling, but it’s nerve-wracking waiting for these results!  On top of that stress, my shoulder keeps dislocating itself.  I’ve lost count of the number of times it’s popped from the socket.  It’s so painful; each time it pops out means it’s easier for it to pop out next time.  I’m feeling very isolated, even feeling banished to my room because of what my family wants to eat (chili peppers?  Not so good!) not knowing that it’s a trigger.  It’s so frustrating.  I want to see my friends.  I want to go out.  There are a few movies I want to see–and I have to wait until they come out on DVD before I can see them because going to the theater is way too expensive for me to have to leave because someone else decided to wear perfume out.

Life is just…frustrating.  Over Christmas, I decided to play Santa Claus for my best friend and her kids.  They’re struggling, and it felt so good to be able to give them a fantastic Christmas.  It gave me something to fight for.  However, it’s worn me out.  I’m still trying to recoup and it’s not going well.  I’m sleeping 20 hours a day.  I’m frustrated.  Sigh.  And I hurt.  I’d love to sleep at night…but when you’re in pain it’s hard to sleep.

So that’s what’s going on over here.  I got my ring, and it’s GORGEOUS.  I’ll include a picture.  It’s my new mantra….a reminder to never give up–there is an answer out there.  The journey to find it may be long and arduous, but I’ll get there eventually.

As always, all my love,
Kristina♥

never-give-up

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Coming to Terms that I can’t Keep my Head Buried in the Ground.

In receiving my diagnosis, I’ve had to have a few sit downs with myself so that I can fully understand what this disease will do to my body.  Some of these things I’m ok with…not really being ok to be out in the heat or cold is something that I’m COMPLETELY ok with.  (Give me mild weather and I’m a happy camper…)  But there are some things that I’m mourning.  I was told that this disease is a chronic illness.  It will not go away.  I’m going to have to fight it my entire life; it’s difficult to imagine making plans when any little glitch with my body can make those plans fall through.  These plans include dating, finishing school, getting my degree, starting my career and following my dream of becoming a nurse, moving out, being able to go to a store by myself to pick something up that I want…I’m really having a tough time dealing with it all.

The thing that I’m really upset about is the fact that I want to become a nurse.  This is a dream of mine; to be the person who is the sympathetic ear for patients like me–patients who don’t have a diagnosis but are seriously ill–who are going crazy because their doctors don’t understand.  But seeing as how perfume and cleaning chemicals close my throat, I can’t even go to school, let alone become the nurse.  I thought about becoming an OR nurse–sterile environment…no scents…but I had forgotten about cauterization and the smoke that results from that.  So that has just gone right out the window.  I’m settling for something else.  I’m planning on getting an online degree in healthcare management; I can at least stay in the health field once I have it, and a lot of managerial careers you can do from home.  But that’s the thing–I’m settling.  I’m going to have no face to face encounters with patients who need my help; it’s heartbreaking.  And not only am I having to give up that dream of becoming that superhero, but I may never be able to work again.  It’s a reality.  I can’t pay my bills.  I’m 27 years old, and can’t afford to pay my bills without some help from my parents.  It feels pathetic.  It’s a struggle to understand why this syndrome is so simple–yet so complex at the same time.

I’ve had to mourn my independence.  I rely on my parents for everything.  I can’t go to the grocery store to pick up food.  I can’t control the environment and it scares me.  I’m genuinely scared.  I’m so beyond frustrated with how big of a market perfume and cologne have…simply going to a restaurant is potentially harmful.  I’m going to my doctor’s on Wednesday to start testing, and I’m going to be flat out honest and ask for a handicap sticker.  I don’t want to be that person, and I won’t use it if I don’t have to–but because I’m SO sensitive to scents and temperature, the less time I’m outside, the better.  I cried when I realized that I needed it.  I never thought it would get this bad.  But, it has.  And it’s heart-wrenching.  I’m also applying for disability soon.  I never imagined that I would be that person who would have to rely on the state for my income–but that’s how bad this disease has become.  I was always the ambitious one.  I was the one who was going to save the world.  And now?  I feel like a lump on a log.  And I know that my body is so busy doing so many different things, but I can’t help but feel stagnant.  It simply sucks.

I simply cannot wait to get this testing done so I can start to mess with my meds.  What I’m doing now, simply isn’t working.  I need help.  There are days where I sit up and simply think, “What’s the point of getting out of bed?  You’re just going to be back up here in 2 hours for a nap…might as well stay here.”  and then “Why bother showering.  I’m not going anywhere.  It takes so much energy to shower, and then I’m wiped for the rest of the day.  I’ll just stay in my pajamas and not worry about it.”  The depression is real.  The anxiety is real.  And I know that I’m strong–I KNOW I’m a strong person; but the struggle bus is chugging into town.  I ordered a ring last night (sorry Mom…the first one turned my finger green, and caused me to itch…) and it has the semi-colon stamped on it.  On the inside is a secret message people won’t be able to see and only I’ll know it’s there (plus you now since I’m telling you ☺).  It says “Never give up” and it’s something that I need to remind myself.  There have been days where I want to just give up.  I want to crawl into that hole in the ground.  I want to escape from society.  I know I can’t.  It’s not ok to want to feel this way.  There are times where I can’t help it–it’s a part of this wretched disease.  And that’s why I’m going to wear this ring for the rest of my life–it’s my symbol to keep going…to keep fighting…to never give up on myself or on God.  As soon as it comes, I’ll post a picture of it.  I’m really excited to wear it.  Keep it close.

I know I kinda jumped around a little, but my brain is scattered tonight (plus I’ve had to take a crap ton of Benadryl so that my hives would go away…) so I apologize.  I hope you are all having a fantastic holiday season!  I’ll write more soon.

Thank you so much for your kind thoughts, prayers, and well wishes.  They mean more than you could possibly know.

As always, all my love,
Kristina♥

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♥

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

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 ♥♥♥