Chemo Update!

Hi everyone!

So, if you’ve been keeping up, I started taking medication in February to help repress my mast cells from freaking out; it happened to be chemo in pill form.  I wanted to give you an update.

So, going down this particular road, I was scared as hell.  I mean this was chemo!  Chemo is POISON!  And yet, I was desperate for anything that would help ease some of my pain.  And I have to tell you, I found it.

Starting the Hydroxyurea, I took one pill every other day.  It was the lowest dose out there, and by taking it every other day, I wasn’t overwhelming my body.  It made me feel extra tired in the beginning, but my body soon adjusted.  I didn’t have any adverse effects besides a decreased appetite.  BUT!  The pain in my body, which was a 9, 10, 12 on some days has come down to a 7 or an 8; that’s a HUGE difference.  But the best part is, it’s not only helping the pain–I’m feeling more and more like myself as I take it.  I’m still extremely tired, but I’m perkier, I’m smiling more, and I even have times where I forget that I’m sick.  It’s amazing.  Yes, I still hurt; yes, I still have hives; yes, I still have days where I react like crazy; but it’s seriously the best that I’ve felt in months.

I saw my doc this past week, and since it was such a success, we’ve upped the chemo to everyday.  I have to tell you…it’s been a rough week.  I’ve been exhausted, nauseous, had a cold I previously had get worse, and I’m frustrated; HOWEVER, I’ve been told that it gets worse before it gets better.  So, I have that to look forward to and hope that it works in the long run.  I’ll keep you updated!

As always, your love and prayers are greatly appreciated and I send it all right back to you.

All my love,
Kristina ♥

Over the Rainbow

Hi everyone,

It’s been an interesting day today, full of awesomeness, loneliness, thoughtfulness, gratitude, among a multitude of other feelings and emotions.  What started as any old day, turned into into a philosophical day that prepared me to expose myself to you all.

It’s taken me a long time to open up about a particular part of my disorder that I’ve been hiding; I feel it’s what makes me the most vulnerable of all; and that part is Pain.  I’ve mentioned that I suffer from chronic pain, but I’ve always had such a strong outer shell that I tend to hide behind.  I’m now ready to open my shell and tell you about that; but first I need to tell you how I finally got there.

Today, I woke up after about 4 hours of sleep and got dressed and ready to go out with one of my 2nd moms today for lunch.  Because of how tired and sore I was feeling, I decided to put on my Wizard of Oz Ruby Slippers socks today. My own little boost that only I knew about.  It gave me a little strength to get through lunch; a little boost of something I love to do something else I love and so needed.  Lunch went great, but when I got home, I developed a fever and really felt like my body was deciding that lunch was enough for the day.  I curled up on the couch with both boys (which isn’t normal…) and we just watched some silly tv shows.  When mom got home from school, she gave me a gift from the teacher she works with–a group of charms that describe the Wizard of Oz.  It just gave me a few tears and now I’m so excited to create a charm bracelet around these awesome charms.  They’re absolutely adorable, and just instantly lifted my mood.  Which was great, because my pain was really becoming strong again.  After everyone had gone to bed, I was flipping around the channels, and found a documentary on Judy Garland.  It’s funny that I seem to get my signs in 3s from God, and for them to come when I didn’t ask, but needed is a wonderful surprise.  This was my final clue that I’m ready to open up about this side of things.

It was a comment from someone who identified Somewhere Over the Rainbow as their own little theme song, but they identified it with his own sexuality.  He said, “because we’re always looking for that better place to be, that perfect place that you haven’t ever seen, but know is out there and never stop trying to find it.  It’s over the rainbow,” and that IMMEDIATELY struck me that it’s my thing too.  I want to find my own sanctuary, I want to find that peaceful place, I want to find that place where I’m completely pain free, I want to find that place where I’m completely healthy and I don’t ever need to deal with this wretched disease.  I just need to keep plugging on, walking down that yellow brick road, to find it.  And that thought gave me the courage to talk about my pain.

So.  I’ve mentioned that I have chronic pain.  I have been in a flare for a while now that simply won’t stop.  I’ve never felt this kind of pain before.  I have always had a high tolerance for pain, and I’ve been broken down to tears more than once because of this flare.  The best way I can describe this pain is, imagine all of your bones were volcanoes.  You know there’s molten lava ready to burst at anytime.  Now increase that pressure.  More.  More.  More.  Increase that pressure and pain until you think that your bones are going to explode like a volcano does when it erupts.  That pain has been all over my entire body.  And that’s just the bones!  My joints are acting up, swelling and throbbing for no reason, and then add in the nerve pain.  I’ve been having such a hard time, and truly, I’ve never ever felt like this before.  To add to it, nothing has been helping to relieve any of the pain. I tried Tylenol, Ibuprofen, narcotics, benzos; hell I even tried Benadryl to see if it would help to settle down any of the mast cells that were causing all of this pain.  Nothing helped.  At one point I sat there and asked mom why this was happening to me, and she had no answer.  I asked God why this is happening to me.  While there was no direct answer, he did give me my docs.  After about 3 weeks of just praying that this pain would go away, I finally gave in and called my doc.  He called in a steroid, and while it’s helping SOME of my pain, I still have a ton of pain everywhere.  I’ve been having a really hard time dealing with this, and I’ve been shutting people out.  Well, here I am.  I’m in the open.  I don’t like being this vulnerable; you can’t control pain; it’s hard to let someone know you’re in so much pain because they can take advantage of that, they can hurt me unknowingly; or worse, they can hurt me intentionally.  It’s a horrible feeling, but I’m finally ready.

So now, whenever I’m having a hard day, I’m simply going to sing my song to myself as a reminder that my perfect place is out there, and I simply need to keep dreaming and eventually, follow the yellow brick road.

New Doctor, New Beginnings

Hi everyone!

I’m writing today with good news!  I have FINALLY found a doctor who actually LISTENS to what I’m saying.  WHAT A CONCEPT!!!  Sarcasm aside, this man is fabulous.  Dr. Dubravec, in Cadillac, MI, is one of the best doctors I have seen.  He’s logical! 

A little background.  I had a doctor closer to home that I was planning on working with.  He had all the recommendations of people I trusted, and I know that Dr. Afrin had worked with him before.  I had my first visit with him before I went to see Afrin for my 2nd visit.  Everything was great, and they were working with me.  I needed to change my insurance to one they took, but they understood that I would be a cash patient in the beginning while getting things changed over.  The lovely state dragged their feet on this, and I didn’t get it changed for 4 months.  Which that doctor knew about.  Then, my insurance changed and I called to make my 2nd appointment with this local doctor.  I was STUNNED when I was told that I was being dropped from their practice.  Apparently, I was supposedly committing fraud, and I lied to them when I initially had my first visit.  They were insisting that I told them that I had NO insurance, instead of an insurance policy that they just didn’t accept.  This biller yelled at me for quite a while and I’m confused and sobbing at this point.  My point was, why would I lie to someone who I wanted to help me?  Why would I risk that?  And then my mom called to talk to him just so she could understand what he was talking about, and he immediately accused me of lying to them again.  My mom, being my witness, stood up for me and asked what he was talking about.  He proceeded to tell her about a conversation that he remembers overhearing that I had with the receptionist when I first walked into the office.  Keep in mind, he was not a part of this conversation.  When my mom reminded him of a conversation he was actually a part of, he barely remembered that conversation.  This proves to me that he had NO idea what he was talking about, and that his accusations were unfounded. I’m still angry about how I was treated, but I’m no longer a part of that office, which was the best thing for me in the long run. 

SO!  Because of the ridiculousness that was that doctor’s office, I found Dr. Dubravec.  The day I called, the receptionist was SO NICE and more than willing to get me in quick.  I had to wait a month and a half.  And HE WAS WORTH THE WAIT!!!  I could barely sleep last night because of how nervous I was that he would be another dead end.  He’s the exact opposite.  Not only was I called back ON TIME (crazy thought…) but he sat there and listened to me.  He read all of my records, asked for more, read my letters from Afrin, and looked at me and smiled.  “Ok.  There are doctors out there who rely ONLY on test results.  I’m not one of those doctors.  You’re sick.  You’ve done a ton of testing.  What I can see makes me lean towards MCAS, so why are we waiting to treat?  I’m not going to.  I normally wouldn’t start to just treat first visit, but you’ve been sick long enough.  Let’s get going.”  I literally dropped my jaw.  Mom and I said “Thank You!” at the same time.  Not only is he starting me on 2 new prescriptions, we’re switching around some of the over the counter medications I take as well.  I was stunned; who does this?!  With the crap that I’ve gotten from doctors, this was amazing!  I was on the verge of tears.  Truly, thinking about this visit, I’m still emotional.  Before he left, he asked what my goals were.  My first goal was to get rid of the pain that I constantly have.  He prescribed a medication he’s had success with in the past.  I talked about how I wanted to go to a store.  Another medication.  I mentioned that I wanted to gain my independence back.  He smiled and said, “this is the first step.”

I’m so taken back by how amazing he is.  I’m on a list for a call in a month simply to see how I’m doing.  WHO DOES THAT?!?!  I’m so excited about this.  For the first time in ages, I have hope.  It’s a nice feeling, and I’m holding onto it as tightly and as close as I can. 

Thank you all for standing by me.  You mean more than you could possibly say.

All my love,
♥Kristina

Emotionally Charged

Hi everyone

Tonight is a super emotionally charged night for me.  I’m really struggling.  I’m having to come to terms with everything that this disease has taken from me.  Sure, I’ve accepted that I probably will not work in public again.  I’ve accepted that I’m never going to be fully independent again.  But it’s the little things that really hit me hard.

My cousin is getting married today.  He and I were close growing up.  We were the 2 our age, and so we bonded.  I had to make the heartbreaking decision to not go to his wedding.  I’m truly disappointed I can’t be there to celebrate with him.  If the wedding had been close by, I would have tried to go.  But the wedding is at least an hour away, and I’m simply too reactive to be that far away from home with a very good chance of being exposed to a trigger.  I’ve lost out on a lot of different family events, and it’s hard to accept and understand this. I’ve made plans with a friend, but it isn’t the same thing.

Another thing I’m missing out on, is saying good-bye to a dear family friend.  George was a grandfather type.  He’d been sick for a while, but seemed to catch a 2nd wind.  And then, he was just gone.  I’m so glad he’s out of pain.  I wanted to go say good-bye to him, but due to circumstances out of my control, I couldn’t.  His funeral is also today.  And I’m sitting here in my family room at 4am sobbing because I can’t be there.  Funeral homes already have a scent to them that would set me off.  On top of that scent, perfume is always there.  I’m broken inside because I can’t do what I want to, and be surrounded by friends and family who all cared about George.  And I can’t.

I’m really struggling to process all of this.  My body isn’t cooperating.  I’m covered in hives, the pain has gotten worse, and I’m constantly doped up on the Benadryl.  I’m tired of feeling so sick.  I want to feel normal again.  I miss Kristina.  And I truly hope to meet her again.

Sorry for the downer tonight.  I’m trying to process everything.  And it’s tough.

I love you all

♥Kristina

A Few Things I Wish People Knew

Hi everyone!

I can’t thank you enough for all the positive feedback and love from my last post.  I was in a very angry and low state, and that post really helped me to deal with everything.  I wanted to address a few misconceptions about this illness, and hopefully answer some questions.

One thing I’m always asked is, “have you thought about allergy shots?”

First off, we asked.  They wouldn’t help.  MCAS is a blood disease with my mast cells not behaving in a normal way.  I have triggers.  My triggers aren’t true allergies.  With allergic disease, you could potentially train your body to stop the adverse reactions.  When it comes to MCAS, every potential exposure can and will progress the disease.  So, I know the suggestions for allergy shots come with love, please stop.  There’s nothing out there that will completely get rid of my symptoms.  I might be able to take some medication that will lesson the reactions, but they’ll still be there.  And the triggers may change.  For instance, I used to be able to drink pop like crazy.  Out of nowhere, the caramel coloring in dark colored pops (colas) became a trigger.  I gave up all pop (minus the occasional Sprite here and there).  While in Minnesota, I wanted to have one last Pepsi, and I wanted to savor it.  It was a big mistake.  I had maybe 6 oz of the bottle, and I ended up sick for 2 solid days.  So, it became severe in the few months that I didn’t drink the colas.  It’s like that with so many things.  I’m still learning my triggers, and they will change.  Bear with me while I’m still learning my body.

Another thing people ask is, “if you have your Epi-Pen, why do you need to go to the hospital?  I thought Epi-Pens stopped reactions.”

WELL…you’re half right.  Epi-Pens may halt a reaction for a period of maybe 15-20 minutes, but it won’t stop a full blown reaction.  For that, you need the medications that are given at the hospital: 2 types of antihistamines and a steroid.  They are really the only medications that will completely stop a reaction.  And when you’re taking these medications, you need to be under close eye of a trained emergency team.  The thing with the Epi-Pen is it wears off very quickly.  And then, even after you’ve gotten your meds, you can have something called a rebound reaction, basically another round of anaphylaxis.  It’s not fun.  But it’s better to be in the hospital when it happens, rather than at home where you don’t have the correct treatment plan.

“Can you outgrow your allergies?  Someone I know was really allergic to milk and he outgrew his allergy.  Do you think you could do that?”

The short answer?  No.  This disease is a progressive disease.  It will continue to get worse and worse as I get older and come into contact with more stress.  There’s no way to “outgrow” this disease.  I wish there were.  There are treatments, but nothing will completely fix this for me.  And while I’m happy for your friend, it sucks that it’s thrown in my face that others are healthy.  I know that sound petty, but if you’re chronically ill, you now what I’m talking about.

“DO YOU WANNA SEE MY PICTURES FROM VACATION/CONCERT/ADVENTURE I JUST DID?”

Honestly, no.  I don’t.  And I’m not trying to be mean, but it’s really hard for someone who “can’t” to see people do the things that you wish you could.  It sucks when all you want to do is go out and see something, and not be able to; seeing people who you care about getting to experience life is great–I love hearing about it.  I don’t want to see it.  Not everybody thinks like me.  There are others who love seeing pictures of what everyone else gets to do…because it’s like they’re there with them.  But speaking for myself, it just emphasizes what I’m missing.

“So, you’re just allergic to a bunch of stuff?  It could be worse.  You could have cancer…”

I cannot tell you how much this statement irritates me.  You’re right.  It could be worse.  But by telling me that it could be worse tells me you’re not taking me seriously, or you don’t understand how complicated this disease is.  You’re negating my own feelings.  So please stop telling me it could be worse.  I know it could.  I never dreamed that I would be this sick.  Ever.  I have terrible days where I can’t get out of bed.  I have severe depression and anxiety caused by this disease.  I have lost all sense of independence.  We are all fighting battles of our own; don’t compare me with others who are sick.  It’s a completely different journey.

“You slept all day?  I’m so jealous.” “You don’t have to work?  You get to stay home and not work all day?  I’m so jealous.”

No.  Don’t be.  It’s miserable.  My sleeping habits are terrible.  In a flare, I can sleep anywhere from 15-20 hrs a day, and still wake up tired.  It’s miserable.  You don’t want this.  As for not working, I’m going stir crazy.  My mentality is still that of a person who wants to get out on their own.  I HATE not being able to work.  I’m bored very easily.  I try to find ways to pass the time, but it’s lonely.  Please.  Don’t be jealous of this–I’d do anything to be able to get back out into the workforce.  You don’t want to be stuck at home doing absolutely nothing.

I’m doing my best to get through this.  I simply want people to know the answers to different questions I’m asked frequently.  I’m sorry if I sound harsh or mean at all, but these questions have been getting on my nerves.

This weekend I’m headed over to Lake Michigan to spend a long weekend on the beach.  I’m so excited about this…I know I “rest” a lot at home, but I need this–to get to the beach and relax.  People have criticized me for going on vacation when I’m sick.  Go away and don’t judge me.  I’m not apologizing for this.  Yes, I have an incurable, chronic illness.  Yes, I struggle to do things at home.  No, I’m not an invalid who needs to be cooped up in a cage all day long.  I’m still 28 and need some freedom.

If you have more questions, please ask.  I’m an open book about this illness and love to share what I know.

Sending all my love to you all,
Kristina ♥

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 ♥

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♥