A Little Realism

Hello everyone

I want to do a little visualization for you.  Imagine you’re in a clear box.  It’s a nice box…you have everything you need.  It is an air-tight, temperature controlled box so you’re comfortable.  But it’s immobile.  You can see everyone around you succeeding and starting their own adventures.  You can see the fun they have when you can’t be there.  You want to join them, but your box can’t move.  As time goes on, your friends and family start to move away from the box.  It’s almost like you’re forgotten.  You decide to break out of the box to follow the people you care about, but the second you open your box, you’re exposed to a number of things that are harmful for you, and you know that you HAVE to remain in your box in order to stay healthy.  People who you care about used to check on you frequently, but those checks have become further and farther between.  Some friends who said they love you have completely disappeared.  It’s so lonely in this box.  It’s isolating.  There are a few who are constantly by your side, and as much as you love them, you want a variance…you want to see the people who claim they care about you.  When anyone who decides to pop in does, it’s usually because they don’t have anything better to do, and I’m an afterthought.  I could have plans with someone, and because of cause A, they either cancel, or change the plans so you have a shorter amount of time with them.  It’s hard being that person.  It’s hard being the 2nd choice all the time.  You become angry and lash out at those few who are around all the time.  You don’t mean to, but it’s a natural reaction when you can’t do the things you want to do.  You don’t feel any different from your normal self, besides the physical things the box protects you from.  You don’t understand why people don’t seem to care anymore.  You want to just feel just as ok outside of the box as you do inside the box.  But.  It’s not safe.  And all you can do, is watch the people who you care about disappear.

This is your life with MCAS.  This is what I have been experiencing lately.  And to try to make people understand, I thought that this was a great analogy.  I am sensitive to temperature, humidity, and the sun.  So I literally can’t go outside at all on the days where it’s stinking hot.  Even 80* is too much for my body to handle.  Not only does it make me physically sick, but the sun gives me hives, and the heat attacks my joints making them swell and hurt like hell.  So I live for the days when it’s 75ish and partly cloudy.  As long as the temperature is decent, I can find shade and enjoy some fresh air.  However.  I’m also allergic to smoke.  Any kind of smoke–grills, cigarettes, and bonfires are my biggest triggers.  So, while I live for the days where it’s 75, so do my neighbors.  And at any chance they get, they have a bonfire.  They grill.  They also spend time outside.  Which makes me run inside and have to stay there.  It’s so frustrating, and I’ve grown very angry this past week.  I can’t walk to get the mail.  I can’t even let my dogs outside.  If you know me, you know I’m a very independent person (surprise, right?) and I HATE having to rely on my parents for everything.  It sucks!  I love them for supporting me, but there are some things I wish I could do for myself.

I always try to find the lighter side of things–I like to play games in doctor’s offices.  I like to flirt with the cute nurse or doctor who is taking care of me.  I like to always have a smile on my face.  This week has been hard.  I don’t know how to control my emotions.  Everything I say has a harsh tone to it, like I’m attacking.  I have lashed out at those who I love and care about.  It’s not on purpose…and I genuinely don’t know how to handle it.  I wish this post were more happy, and about how well I’m doing…but this is the truth.  I have my bad days as well.

So, now you might know a little more about how MCAS affects the psyche of a person.  I normally have a smile to help hide the pain, but I can’t do it anymore.  The temperature is supposed to be absolutely beautiful tomorrow, and I’m praying that nobody starts burning anything until the evening, because I fully plan on sitting outside as much as humanly possible tomorrow.

Keep me in your prayers…they do help.

As always, all my love,
Kristina ♥

SO MUCH STRESS!

Hi everyone!

I know it’s been a while since I’ve posted, and I apologize for being so negligent; things have been crazy in this girl’s life.  There’s been an engagement (Congrats bro and to be sis!!!), friend drama, and one of the scariest reactions I’ve ever had; not to mention that the normal reactions have been getting worse and worse.  It’s been so much, and I’ve been sleeping, hiding, and doing a lot of crying to be honest.

So, my brother is the best brother in the world.  He may be a pain in the ass, but he’s my pain in the ass!!!  For real though, he’s taking care of me.  When he proposed, I have to admit that I was stressing over his wedding.  I have so many new triggers, and I don’t want to ruin his day.  He and his fiance are planning their wedding AROUND my triggers.  It’s so comforting to know that there are people out there with empathy.  They want to have an outdoor wedding; the issue with this is I’m allergic to the sun, and I can’t be in heat for very long.  Granted I’m IN the wedding, but he even said, “I want my family there.  I want her to be safe”  Which, of course, gave me tears.  The place that they’ve fallen in love with is FABULOUS!  They have both indoor and outdoor spaces for the lovebirds to get married in; if it’s nice out, we go outside.  If it’s hot and gross outside, we stay in.  It’s pretty awesome.  He even told them about a few other triggers that can be avoided.  The best part, is he’s agreed to have absolutely no artificial scents at this wedding.  This includes perfume, cologne, smelly aftershave, smelly hand lotion…etc.  There will even be people at the door smelling everyone to make sure nobody sneaks in with a scent that could hurt me.  If someone happens to show up wearing a scent, they’ll be told to turn around, change, shower, and then they can come back.  This is just so sweet and amazing.  It’s definitely lifted some of my own stress off my back, to know that I’ll be safe at this event.

People don’t know how to be friends anymore.  I’m going to say it.  They’re so focused on not missing anything on social media, that they forget that they’re with people in the first place.  It’s gotten so bad with some of the people I know that I’ve texted them to get off their phone when they’re sitting right next to me.  (You folks know who you are!!!)  The one thing about social media that I hate is the fact that everything that you would normally talk about, is blasted in your face and there’s no interaction.  I’ve had people abandon me because of how they interpret something that I’ve posted to Facebook, or because they read something and immediately assume something that had nothing to do with them in the first place.  The rudeness of people is simply amazing, and I’ve had to cut ties with some people because of how rude they are.  I’ve tried to ignore it, but I can’t do it anymore.  I’m done with the rude!

So, this reaction was absolutely terrifying.  I had been having hives for a few days before this happened, but I thought they were pretty controlled with the Benadryl.  How wrong I was.  I had been exposed to a number of things that are triggers leading up to the reaction–smoke, perfume, toxic foods, and then the mystery triggers–and I think that what happened was my toxicity level just reached it’s point and my mast cells went to town.  I went from fine to absolutely no voice and not being able to swallow or breathe right.  I immediately Epi’d myself and we went off to the hospital.  The emergency department that I love is about 20 minutes away from my house.  Which is fine; usually when I use my Epi, there’s more than enough time to get to the hospital.  This night, not so much.  We were a couple miles away from the hospital when I started to lose my voice again, and by the time I checked in, I couldn’t breathe right either.  I told the lady checking me in that I was in the middle of anaphylaxis, used my epi, and it was wearing off and she went to town.  She immediately grabbed a nurse, and the nurse put me in this trauma room.  I had a few nurses working on me.  One was hooking me up to machines, while the 2nd was grabbing a 2nd Epi to use on me.  It was really scary.  I was getting light headed, it was harder and harder to breathe, but I knew I was in good hands.  Once the 2nd Epi kicked in, I was able to breathe and swallow again.  My voice came back also, which was so good.  The Epi is pure adrenaline, and I seriously thought my heart was going to beat out of my chest.  It normally pounds after the epi, making me jittery, but this was a whole new ballpark.  Nevertheless they were able to relax a little, but if they hadn’t of given me the right meds immediately, the 2nd shot would have worn off and we would have been right back to square one.  Thankfully, my nurse didn’t need doctor approval to get my meds from the cart, and I got my IV meds that stop the reaction.  All of this happened within 5 minutes of walking in the door.  It was amazing how much of a well oiled machine they are.  Once I was stable, I was able to look around the room.  This room was CRAZY!  There was so much equipment with us, and I wanted to play with it all.  (I’m a healthcare nut…don’t judge me!!!)  My eyes landed on a cart of supplies and it caught my attention; on the bottom of this cart it had 2 drawers I’ve never seen before–one had “postmortem” on it, and the 2nd of the drawers was a locked drawer with the words “evidence collection kits.”  Seeing that really hit me.  It became very real…shows like Grey’s Anatomy and Law & Order: SVU are REAL.  It was a crazy thought and I couldn’t help but think that I’ve never thought about what happens after someone dies or is brought to the hospital…that things like that don’t happen in MY neighborhood.  It was eye opening.  ANYWAYS, I was able to move out of the high tech room and into a regular room soon after and only had to stay a total of 4 hours, which is a pretty quick visit compared to some of them.  I felt like I had been hit by a truck for the next few days (totally normal…) but I’m ok.

This reaction really proved to me just how sick my body really is.  In the span of 1 1/2 years, I’ve gone from loving my smelly lotion and perfume, to being so allergic to it that the tiniest of exposures results in anaphylaxis.  It’s CRAZY how insane my life has become.  It’s gotten to the point where it’s hard for me to even leave the house without fearing a reaction.  My anxiety has gotten worse, and having so called “friends” come and go without a look back has been very hard.  It’s been proven that stress is the #1 mast cell trigger, and with the amount of stress in the past few months has been so ridiculously high; it’s no wonder why my body is in a constant state of attack.  Now that we’ve found the place for the wedding, I’m more relaxed because I know I’ll be safe.

Boy this is a long one; it’s almost a novel!  I see my MCAS guru next week, and I cannot wait for this trip.  I simply can’t wait to learn more about my body, and get going on more treatment options.

I love you all.  Thank you so much for your support!

All my love,
Kristina ♥

Birthday Reflections

 
Hi all!
I’ve been doing a lot of thinking about my life, and where I am, how far I’ve come, and where I’m headed. 10 years ago, I was this bright eyed, naive girl graduating high school with big dreams of being a world class businesswoman.  The world was at my feet. Nothing was stopping me. When I pictured 10 years from now, I always expected to be out of my parents house, married, a full blown career woman, and successful. I never expected that my world would change so drastically. I’ve been to hell and back.  I continually get beat down, but somehow, I’m still chugging along.
I look at people my age, and can’t help but feel so stagnant and keep comparing myself to everyone else.  They’re starting families, getting dream jobs, outright being awesome at being awesome.  I look at myself and think, “man, this is sad.  I’m still living at home, I don’t have a career.  I don’t have a degree.  Look at them passing me by.” And feel like I’ve accomplished nothing.  However, there’s no comparison.  I’m doing so much everyday, and it’s always overlooked.  I’m fighting a life threatening disease.  It takes everything that I have to fight everyday.  The slightest trigger could kill me at any second!  So, to compare myself, is utterly ridiculous.  I’m doing more than others.  I’m putting a smile on my face and LIVING.  So, I might not be where I pictured myself 10 years ago, but I’m stronger than I’ve ever been.  I might not have a degree, but I’ve learned so much about my body and this disease that I should.  I might not have the family I expected to have, but I have a pretty awesome family (immediate blood family and my best friends) instead, who I wouldn’t trade for anything.  I’ve had to learn how the word “success” has multiple meanings.  I may not be “successful” in an ordinary, but I think that I’m successful in my own way.
So starts age 28.  I’ve come so far.  I am stronger than I ever expected to be.  I know how to be a friend.  I know how to treat others.  I can’t wait to see what other “successes” I’m going to accomplish.
Love you all,
Kristina ♥

Not How I Wanted to Start

So, today is the first day of the April Healthy Eating Challenge…and I have the stomach flu. I haven’t been able to eat anything since Friday, and am absolutely miserable. I’m sure I’ve already lost weight…so my totals will be different, but gosh I feel like garbage. 

So, Friday I had some drama happen. Extended family is always a pain in the ass and my extended family is a peach. If any of you are reading this, I wish I could feel worse about what I’m saying, but it’s been a long time coming and it needs to be said. We got an invitation in the mail to a wedding. My younger brother got his own invitation for he and his girlfriend. I was included on my parents invite, without the option of a date. And it hit hard. I feel like I’m thought of as a child. So, because I’m single, I don’t get my own invite? What the hell? If you’re going to give someone a date, everyone in that family should be allowed to have a date. My brother gets treated more like an adult than I do. I don’t think it was done with malice; however, be considerate of everyone. So this really got me angry, and it pushed me over an edge. I can’t put on that brave face around them anymore. Whenever I do anything, it never is enough. I’m screwed if I do, or if I don’t. Whatever decision I make, there always needs to be a why. Sometimes there isn’t a why, or there isn’t anything deeper as to why. I can make a decision without telling every thought that went into making that decision. I can’t keep trying to answer questions without wanting to scream because I’m not being heard. 

This line of thinking has just made me start really thinking about who I surround myself with. Someone I considered my best friend, my sister, doesn’t call anymore. I don’t understand what changed. So. I’ve decided that I’m no longer putting myself out there. I can only do so much with the limited amount of energy I have. I’ve been pushed to a point where I can’t do it to myself anymore. 

All of this stress, mixed with a virus, and I’m so sick. I cannot get this under control. I feel overwhelmed with emotion, overwhelmed with frustration, and I don’t know how to get it back in check. 

Hoping I can start to drink water, so I can get going on this.

Keep me in your prayers. I need them. 

All my love, 

Kristina ❤

It Feels GOOD to Feel like Me

Hi everyone!

I am SO excited to be sharing this post with you all.  In the past few weeks, I’ve made a few changes to my life (medications and diet) and it’s AMAZING how my body has changed in that time!  I can’t wait to share with you what worked for me, and what my next plans are!

So.  For almost all of February, I broke out in hives every night.  Didn’t matter what I ate, I was simply breaking out in hives, and I was really over-using the Benadryl.  I hated feeling the way that I did, but there was literally nothing that I could do to figure this out.  So. We took a good, hard look at the foods I was eating, and we decided that the preservatives in the food I was eating was the culprit.  So…preservatives were cut out.  I was still reacting, although not as bad, so we cut out pop, thinking that the artificial sweeteners or the caramel coloring.  So.  I cut out pop and preservatives, and my body felt so much better.  It’s amazing how when you change what you put in your body, your body appreciates you so much for it.

About the same time that I cut out the preservatives, I started drinking Arbonne shakes.  Arbonne is one of the best choices I have ever made.  Not only does the protein give me a ton of nutrients and vitamins and minerals, but it’s all natural and there are no CHEMICALS in the protein.  It really got me thinking about our food.  I’ve started snooping through our cupboards, and am quite disgusted at the number of chemicals and preservatives that is in our food.  Disodium-Triphosphate?  It’s a chemical!  It’s ridiculous how many chemicals that are in our food.  My whole thing now is, if you can’t pronounce it, don’t eat it.  It’s probably not good for you.  With so much research done about how our food effects our body, we need to really focus on the good instead of the bad.  What’s really disgusting, is how expensive natural foods are compared to chemical foods.  It’s beyond ridiculous.  So, I’m eating as purely as I can at this point.  There are a few things that I’m having a hard time giving up, but I’ll get there.

Throughout my investigation, I’ve found that most foods have the ingredient “Natural and Artificial Flavors.”  Well what the hell is that?  I emailed a couple companies, and they refused to tell me.  Funny, I thought that companies were REQUIRED to list all of their ingredients, but apparently it’s legal to use this figure of speech and get away without listing everything.  I posted this on one of my mast cell pages, and a few people who got answers from some companies were able to tell me what is going on.  It’s CORNMEAL!  It’s a filler!  There’s absolutely NO REASON for this cornmeal to be in our food, but it’s used as a filler to make the food last longer, and go farther.  Technically, they’re right.  Corn is natural.  However, if someone is allergic to corn, they don’t know that it’s in that particular food.  It’s terrifying.  I started thinking about different things that are natural, and the first thing that popped into my head was mold.  Mold is technically natural.  It occurs naturally in nature.  Could that be in our food?  Nobody knows, because companies can get away with “natural and artificial flavors.”  We need to take a stand and force companies to become accountable for their actions.

(rant over)

I’ve also changed up some of my medication.  I started that mast cell stabilizer at the end of January, and I stopped another 2 medications.  Their refills ran out, and I didn’t see the point of getting them filled anymore–they weren’t doing anything for me.  Along with the thinking of unnecessary foods, I’m going along the same path with my medications.  If I don’t see any difference, why should I take something that isn’t doing anything but putting more medication into my body?  There’s no reason for it, so let’s dump it!

With all of these things changing, my body is so much happier.  My mental state is so much happier.  I’ve already lost 5 lbs, and I can’t wait to keep going!  Starting April 3rd, I’m joining the Arbonne April Healthy Eating Challenge, which is a 28 day diet to get rid of the toxins and to eat as naturally as I can.  I’ll be blogging about my experience with this challenge throughout April.  I cannot wait to get going.

Throughout this illness, I’ve lost control of my body.  I’m ready to claim it back.  Wish me luck!

All my love,
Kristina ♥

A Day in the Life

Hi everyone!

It’s Rare Disease Day!  In honor of that, I’m going to share with you a typical (if there is such a thing as typical at this point) day in my shoes.  To be fair, nothing is typical with this disease.  But…we’re going to give it a go.

When I wake up, it’s normally in the afternoon.  Today, I woke up around 11:30 to go to the bathroom, and answer a couple text messages.  I was going to babysit today, but it was pushed back until Thursday.  GREAT!  I can sleep a little more.  So I fall back to sleep, and finally wake up to actually get up around 3:00.  I have slept for around 10 hours (I’ll explain my night soon) yet feel like I haven’t slept at all.  I’m always feeling exhausted.  I don’t remember a day when I wasn’t at least a little tired.  It’s become a normal…one I hate and resent, yet have begun to accept as a part of me.  I come downstairs and go to eat a little something.  Today, I happened to make myself a salad, but I normally jump right into a  protein shake to get me going.  I usually sit down and watch a little TV.  When mom gets home from work, sometimes I shower…sometimes I stay sitting there.  My stairs are steep, and there are days where the 13 stairs we have compare to Mount Everest.  Today was a day where my stairs are extremely daunting.  I’ll sit and not do anything, and yet feel so unbelievably exhausted, it’s almost comical.  I laugh at myself because of how tired I am.  For the last week, I’ve had hives all over my body–but especially on the palms of my hands and the bottom of my feet.  That skin is so sensitive, it hurts along with itching.  It’s a feeling that can’t be satiated and will not go away.  I usually try to ignore the itching, usually only breaking down to take Benadryl when I’m ready to scratch my skin off, or the itch has progressed to my lips.  When it gets to that point, my lips are usually swollen, and my hives are pretty intense.  Recently, they’ve been the size of a silver dollar on my palms and feet.  So I finally give in.  A normal dose of Benadryl doesn’t do anything for my itching…it’s almost a tic tac at this point…no…I have to take at least 125-150 mg of the drug in order to feel for it.  I’ve gotten so used to this dose that it doesn’t normally make me fall asleep anymore–instead I feel so fuzzy and stoned.  I hate this feeling.  I don’t understand why people take drugs if this is the way that they feel.  It doesn’t make sense to me.  Anyways.  If the Benadryl works, I usually just still sit and don’t really do anything for the rest of the day, or until it’s time for the next dose.  If it doesn’t work, then I have to grab my Epi, get mom’s attention, and head into the Emergency Department at a nearby hospital.  There, I get my IV cocktail of more Benadryl, a steroid, and Pepcid, which is another form of antihistamine.  It knocks me on my ass for a few days.  Not only is my body fighting the trigger, but it’s now having to process the medication at the same time.  And it takes a lot of energy at that point.  It’s a pain, but I’m so thankful that I’ve never had any problems at this hospital (another hospital is another story…)

When evening comes, I can always feel it.  For whatever reason, pain and itching are ALWAYS worse at night.  It’s bizarre.  And frustrating.  I could be having one of the best days, and then night comes and I’m in such pain, inflammation, and have such severe itching…I want to just cry (or trade my body in for a new model).  I have to describe this pain for you because it’s so complex.  First, I have joint pain.  It’s some terrible pain.  My joints like to swell (and my shoulder likes to dislocate on a semi-regular basis) and they can get so inflamed, there is no definition to the joint itself.  My ankle and knee like to swell this bad.  The 2nd and 3rd kinds of pain are muscle and nerve pain.  These are just as bad as the joint…but these tend to be more sporadic than the joint pain.  The worst form of pain that I suffer from, is bone pain.  Most people don’t have any idea how debilitating bone pain is.  It’s a DEEP pain…coming from the very middle of the bone.  It THROBS.  That’s the only way to describe this pain.  The middle of the bones feel like they’re growing and shrinking in the span of a few seconds.  It’s the worst pain I’ve ever felt…and there is nothing I can do about the pain.  I’ve tried all sorts of things…ice, heat, baths, salt scrubs, tens unit, tylenol, ibuprofen, and even narcotics…nothing helps.  Because of the pain, it keeps me awake at night.  I can never get comfortable enough to fall asleep–the pain always keeps me awake until I reach that point of exhaustion where I just nod off to sleep, usually around 5am.  It’s never a very restful sleep…as any little throb will wake me up, not to mention the itching.  I’m telling you…this is so frustrating.  I usually don’t know what is causing the itching or the pain…besides the disease…I don’t know what the triggers are.  Figuring them out is insane too.  We eliminate one thing from my diet, or from my environment, and go from there.  So far, we’ve gotten rid of most preservatives, and we’re trying to get rid of colors.  Do you know how many things are artificially colored?  EVERYTHING!!!  We’re also getting rid of artificial sugars…do you know how many foods have artificial sugar?  EVERYTHING!!!  I’m just frustrated and really feel like giving up.  But, I never let myself do that.  I keep going.  I have my semi-colon on my finger, and it’s my reminder that giving up isn’t an option.

There are obviously differences in my life–for instance, tonight, I got a huge surprise when someone who I love very dearly sent me a gift card to American Girl–a store I’m completely obsessed with–to get a Girl who has the same nickname that I do.  I cannot wait to get my hands on Tenney.  ☺  My puppies are a lifeline for me.  They make me smile and laugh when I feel like I’ll never smile again.  Just today, Buzz jumped up on my bed, flopped down on my back, laid his head on my shoulder, and just licked my face.  Then he fell asleep and started to snore on me.  He stayed there for a good half hour, and it was so nice because everytime I’d look at him, I’d get a new kiss on my face.  He makes me so happy.  And Woody…he’s just psycho.  I don’t know what I would do without my babies.

To everyone who is thinking about me, sending me well wishes, or praying for me, I thank you from the bottom of my heart.  You all mean more to me than I can possibly say.  xoxoxo

All my love,
Kristina♥

I Never Realized Just How Vulnerable this Wretched Disease Makes Me

Hi everyone!

So, it’s been a little while since I’ve written on this, and I apologize.  There has been a ton of things happening lately, and I’ve been under a lot of stress and anxiety.  I’ve been having a really rough time of it–constant hives, constant horrible pain, and extreme fatigue.  It’s really gotten to me, and I’m struggling to deal with it…but it’s my new normal and I need to just adjust.

So, I had to quit my job babysitting at the end of January.  Something happened where my health was threatened by one of the kids, and I needed to leave for my own health.  The child told me that it was done because “I don’t like you.  I want to send you to the hospital.”  I had never realized how vulnerable I was until this action happened.  It ended up happening twice.  I was threatened on a Thursday, and all throughout that weekend, I was so anxious and really nervous about seeing the kids that Monday.  I was told that the kids had a long talk and had apology letters, but that didn’t stop my anxiety.  I ended up breaking out in hives from head to toe on Sunday night.  I logically thought I had nothing to worry about going into that job on Monday, but I was right to be nervous.  Because the child did it again.  This time it was done in public, in a school.  The thing that bothered me was the smile that went along with it.  This child knew EXACTLY what he was doing, and the grin that he had when getting the idea to threaten me was scarily devilish.  I’ve never seen a more scary smile.  I had to hold it together to get this kid to his own school, and after he was dropped off, I ended up going to my car and just sobbing.  Pure panic attack.  Twice in one week, my life was threatened.  To compare, the kid could have come at me with a butchers knife and it would have scared me the same.  Thankfully, a family friend (2nd mom really) lives in the same subdivision, and I was able to go to her house to calm myself down enough to really drive again.  It took me 2 hours to calm myself down, and I began to react even more.

Stress is one of the biggest triggers for MCAS.  Needless to say, this stressed me out.  I had hives for a solid week, my joints swelled up to a ridiculous size, my bone pain has increased, and my immune system was shot so I ended up getting sick, which I’m still fighting today.  It rocked me to my very core.  I was obviously upset that the kid attacked me (or tried to attack me…) but what bothers me truly is how vulnerable it made me feel.  A single toy could send me to the hospital.  Something as mundane as a rubber band could kill me.  How SCARY is that???  I’ve always known that I had to be careful of my triggers.  I never thought someone would purposefully try to hurt me…especially a child.  I’m really struggling to process this.  I mean, people in high school used to joke (until I told them to knock it off) about my latex allergy, but it was never a threat.  I truly don’t know what to think.  The thing is, this has increased my anxiety about going out anywhere, because anybody could be holding something, wearing something; or a place could have artificial scents that could potentially hurt me.  It’s terrifying that something mundane as a tennis shoe, or a snow boot, could potentially kill me.

I hate what this disease has done to me; to people like me.  We miss out on so many things that we want to be involved with.  My cousin is getting married this summer.  I can’t go to the bridal shower because I’m afraid of scents.  I’m genuinely terrified to go to the wedding… (I’m going to try, but gonna drive separately because who knows what I could come into contact with there…) It’s something that I know I need to do, but I hate how terrified I feel.  I want to go see the new Beauty and the Beast movie while it’s on the big screen.  But.  It’s too expensive to go to have to turn around and just go home.  I want to be able to go out to eat, to the bar, to hang out with my friends, without having to pre-medicate or to worry about my triggers.  People don’t realize how scary it really can be.  I’m doing what I can, but some days it’s just too much.  Today is one of those days.

Keep me in your prayers.  I could use them. ♥

All my love,
Kristina ♥

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

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♥