Invisible Illness

What is an Invisible Illness? An Invisible Illness is one that is not shown to the world. You cannot recognize that the person is sick or chronically ill but they are.  On Wikipedia, it describes Invisible disabilities as chronic illnesses that can significantly impair normal activities of daily life.  96% of people with chronic illnesses show no outward signs of it.  I am a part of the 96%.  I go through life struggling to even find the strength to wake up some mornings or to even get out of bed.  One day I can feel fine and the next, I could go into an entire flare-up.  A flare-up in my case is when all my symptoms come at once.  So my flare-ups consist of stomach pain, dizziness, migraines, sometimes vomiting, body aches, and feeling extremely weak.  There are days that I may have a flare up and I would still go about my day normally.  I push myself to extreme measures because some days I cannot just give up, some days I have to keep pushing myself to eventually make myself stronger in the long run.  I am a zebra, a spoonie, a rare-disease supporter and advocate. Now, you’re probably wondering what I just said.  Zebra stripes are used as the Rare-Disease ribbon, zebra is also a medical slang term for a rare or surprising diagnosis… hence me.  Now, a spoonie originates from a post written by Christine Miserandino found at the bottom.  This is when you measure your daily tasks by counting spoons.  Maybe sometimes you have a lot of “spoons” or you can come up short, leaving you with no “spoons.”  This is when you try not to mention your pain or discomfort.  If you have a lot of “spoons,” that just means you have energy to run your errands or go about your tasks.  I hear so often how I do not look sick, I look normal, how nothing is wrong with me… that is possibly the worst thing you can tell someone.  Even though I do not look, act, or portray that I am sick, I am.  My body hurts, my legs cramp up, my stomach is always in pain.  Do not try to downgrade my illness just because of my image.

This week was a very interesting one. The last time I visited my doctor was around February or March.  He ran some tests to find that I have lumps on my liver, from what, we have no idea.  So some liver tests keeps rising higher and I guess it may start to be a bother soon if it keeps going up.  Also, my liver collects acid and cannot get rid of it fast enough so I look like a dog with fleas, constantly scratching. So guess who has new medication to take! This girl! I already take two blood thinning pills and now I have to take this medication three times a day, which is going to be extremely hard for me to remember since while writing this I already forgot to take it on my lunch break. But unfortunately, I have to start taking them and actually remembering to.

That’s it for now, thanks for reading.

N.Rarity

 

*Picture is not mine, found on pinterest*

 

The Spoon Theory written by Christine Miserandino – https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

2014.

“There is no greater agony than bearing an untold story inside of you.”
– Maya Angelou, I Know Why the Caged Bird Sings

Let’s get back to the infamous rare disease in this post. After I was discharged from the hospital in 2011, I had to drop out of my sophomore semester of school even though I was only two weeks away from finishing. It killed me to drop my classes because I worked so hard and I knew I was succeeding but all that work ended up null and void. I had to postpone my summer job, which I loved, and was strictly told by my doctors that I needed to rest that summer. That’s another part that killed me; I had to give up a job I loved for a summer of rest. On top of all that, I could hardly hang out most of the time because I was still recovering to the point where I overdid it and almost ended up passing out in the Zoo because I stood up for too long. I felt useless, defeated, hopeless, and inadequate. I went into a deep depression that summer wondering why this happened to me out of all people. I went to doctor’s visits regularly, because since my blood is so thick, they have to check that my medication (blood thinners) is working correctly and that my blood is at a stable level. The test is somewhat along the lines of how you check for your sugar levels, you stick your finger with a needle, place the blood on a pad, and it reads how thick or how thin my blood is. I always have to be between 2 and 3 but recently just found out that stress can alter my blood levels, and if you know me, I’m always stressed out. I hated taking medication, I hated getting my blood checked, and I absolutely hated everything about this condition. So I was steady up until about 2012-2013. I always took my medication, did what I had to do, went on my regular doctors’ visits until I began to rebel. No one, absolutely no one, wants to take medication and after a while they started prescribing me other pills because my bones were so fragile from the blood thinners. Once they prescribed those to me, I gave up. I stopped going to appointments, I stopped taking my medicine, and I thought I was fine. Yes, I was reckless and until this day my parents want to murder me for stopping and sometimes I wish I didn’t, but I THOUGHT I was okay, I THOUGHT I didn’t need it, and I THOUGHT WRONG.
2011-December of 2014 I was alright, nothing went wrong and I was happy. I graduated college, I got to experience the Disney College Program, I had survived a lot and gone through even more and I thought I was healthy.
December 2014

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I went back into the hospital for a second time. Apparently the blood clots had started to close and I was sick once again. It was not as serious as the first time but this time, I wasn’t in pediatrics anymore. I remember people telling me I was not going to get same treatment as I did in pediatrics and they were right. The first night, I spent most of the time in the Emergency Room while I hustled my mother to get a wrist band and my sig. other since 2013 had known someone in the E.R. that they let him stay with me. When it comes to my condition, I don’t play games. My parents or someone has to be there with me because I am so mentally messed up when I’m sick that I will not comprehend what a doctor is telling me. My sig. other had put in his two week notice and he only had a few days left at his job but he had told his boss that I was in the hospital and his boss let him stay with me. My mother, father, and sig. other were with me the entire first night and never left my side. This is when the craziness occurred. They said my room was ready and they started bringing me upstairs, to put me in a hallway. Doctors would come and speak to me and I never felt more uneasy in my life because I was speaking about my personal business in a hallway. Now, as you see, I’m more vulnerable now then I was back then. My mother was furious and when she’s mad, you cannot get in her way mainly if it is something dealing with her daughter. I got into a room around maybe 8-9 am, I believe. Being in the hospital around this time was not so bad minus the horrible stomach pain and the fact I was on IV’s for about two weeks and then to add on top of that Christmas was a week later and I definitely did not finish Christmas shopping at all. I was scared most of that time though. I had already spent Easter in the hospital and I felt depressed, I couldn’t imagine spending Christmas in there while all my family gets to be together and if I was stuck in the hospital, I knew I was going to go back into depression if that was the case. I got released a week before Christmas and even though I was still getting back to being okay, and I mean okay in the ‘off IVs, no needles, and have to have strength’ kind of way. I promised myself I wouldn’t let this happen again, I wouldn’t have a scare ever again… but then I realized every 1.5 years; something has to put me back in a hospital. I guess it’s improper to think like that. But it’s true unfortunately.
N.Rarity

Surprise!

Surprise! There’s another post. I guess I was just in a writing mood this week or it could be the fact that I have a break in semesters until May 31st. I’m currently in graduate school full-time and I work full-time while I try to balance a social life. I never properly introduced myself or clued you into who I am as a person aside from my condition so here we go.
Ten Fun Facts:
1. I live in New York.


2. I am 100% Puerto Rican.

3. I have three dogs, a cat, and a guinea pig. Three of those five animals are rescues.


4. I had the privilege of being a Disney College Program Alumni and also obsessed with anything related to Disney.


5. I am into all types of music but mostly you’ll hear me listen to EDM or Hip Hop.


6. I graduated with a bachelor’s in English and currently undergoing my master’s.

7. Whovian – Sith – Disnerd – PotterGirl


8. Makeup over everything, I follow at least 10 or so make-up artist on Instagram, my personal favorite two are Desi Perkins and Lustrelux *fangirls*

9. I have an amazingly large family.

10. I love reading, writing, trips to the dog park, ice cream, POP! Funko’s, Disney pins, sneakers, traveling, and FOOD!
I’m pretty simple. I don’t do much nor ask for a lot. Just food and fun! I’m overly sarcastic possibly 90% of the time and probably tripping over air the last 10%. 

Welcome to me.

Welcome to N.Rarity.

 

Week Vibes & The Month

It’s Monday and I’m back. Let’s just say this week has been an interesting one, so I’ll take a mini break from the story line of my condition, but the month I was in the hospital will follow below. So as most people know, I cut my hair. I cut my hair probably the shortest it has ever been. I’ve always liked long, flowy hair and I was actually trying to get my curls back until I messaged my trio and asked for their opinion, they agreed I should go for the cut and I told them I would that weekend. Spur of the moment decision… I cut it the next day. I feel like my life is currently at a stand-still and even though I am working full-time while going to school full-time, I still feel stuck. I needed a change; I needed something different and interesting. 

Also, it was Mother’s Day, so a big Happy Mother’s Day to all of the amazing mother’s in this world! I know so many amazing women who are mother’s that go above and beyond for your children, especially my momma bear. I’ve had a few flare ups during the week but nothing I cannot handle besides body aches and being unbelievably tired all the time.  


Now to continue with regular programming:

Last that you have read I was out of surgery and being carefully monitored. I barely woke up the next day because my body was drained and I was so drugged up on the pain medication I could barely open my eyes. I felt my mother and my father next to me and that was all I needed. During the first week of being in the hospital, I was in the ICU. Only close family and a significant other at the time. I couldn’t begin eating until about Wednesday or Thursday and then that’s when shit escalated quickly… I had a huge tube in my neck going down into my liver. Sounds weird right? But on that Friday or Saturday, the doctors had begun to tell me they would move me down back to pediatrics so they were going to have to remove the tube. I, being the naïve bimbo, thought that they were going to put me under anesthesia so I wouldn’t feel a thing. NOPE! Within five minutes, the doctors and nurses pushed my shoulders down and started pulling the tube out of my neck while I’m here screaming bloody murder. I felt the tube go all the way up and out and even when it was out they had to push down on my shoulder to stop the bleeding because I could bleed to death. I remember while this is all happening my cousin screaming at my aunt, asking what they were doing to me and my sig. other running out of the room because he was about to vomit. After that, I thought I was all good and no more pain would come my way, but… wrong again. They had to start me on blood thinners because all they knew was I had blood clots and they did not know how they were forming or why. So there are two types of blood thinners, pills and needles. Needless to say, the injection form of the blood thinner works quicker but it hurts and burns like a bitch and a half. Five minutes after they took out the tube, they injected the blood thinner into my stomach and once again, I screamed. The serum unfortunately feels like your skin is burning and I had to take those injections for about three out of the four weeks I was in the hospital. Throughout the next three weeks, I was told I had about 20 different conditions, I had to be put on the liver transplant list (which my parents did not allow) and I celebrated Easter in a hospital bed eating jello. Needless to say, it sucks being in the hospital on a holiday but some nurses are so amazing, they made me feel like they really cared about me. It was not until about week three, they finally figured out I had Budd-Chiari Syndrome with Myeloproliferative disease. I forgot how they found out, but they have never figured out why this has happened to me in the first place. On my last day in the hospital, I had another procedure in which they take out bone marrow from your back and test it. This is when they figure out that I had a Jakk-2 Mutation and I found out that needles and spines DO NOT MIX. While writing this, I reminisce about that month. How strong my family, friends, and sig other were, how my mother spent every single day with me in the hospital even though she did not have to, how my father played no games with my health and how a month, a day, can change your life in a second. I thank all the people who saw me during that month, who wished me well, who didn’t understand what was happening but still reached out and loved me unconditionally and to the people who deal with me now, who deal with this girl who is constantly sick, who’s body hurts 99% of the time, who has to cancel plans not because she wants to, but because she has to.

There’s still plenty more story left…

Thank You,

N.Rarity

 

The Beginnings.

April 2011.
That’s when I was diagnosed with my illness yet it did not fully start then. Since December 2010, I was feeling sick. I constantly had stomach problems, I would wake up in the middle of the night throwing up in my dorm room, I called my parents at 3 a.m. just to pick me up so I can sleep in my own bed and be close to them, and I couldn’t eat. December to April my stomach got larger, I was in and out of the Emergency Room, crying to everyone who was close to me on how my stomach was in pain and I could not handle it. They tried to get me to eat as much as they could and I think I even scared most of my roommates. My parents were worried, no doubt about that but I was so close to finishing my sophomore semester in college that I refused to go to the hospital since I am a hard-headed little brat.

April 11th, 2011
I was rushed to the Emergency Room at 4:00 a.m. because I was vomiting and crying uncontrollably. I was admitted right away but honestly it was such a blur that I do not remember most of what happened until I got into my room. From April 11th – April 14th, I was told that my gallbladder was enlarged and they were giving me medicine to bring the swelling down. The doctors didn’t know why nor did I ask for a certain answer anyway. I hate hospitals. I was scheduled for an MRI on April 14th and my doctor said that since I felt better, I could go home and be an outpatient for the rest of the process, pretty bad idea now that I think about it. Rushed out of the hospital when I did not fully complete the MRI because I’m claustrophobic and I freaked out and ran home into bed. That night, my mother received a call from my doctor saying we shouldn’t have left since I did not complete the MRI and to come back right in the morning for an outpatient process and of course my mother agreed.
Worst.Idea.Ever

April 15th, 2011
I woke up in excruciating pain, wanting to basically rip out my entire stomach and just lay there. My mother rushed me to the pediatric ward of my hospital and while in the waiting room, I was hunched over, crying. Luckily, my doctor stepped out for a patient and saw me in pain and rushed me into the exam room where in 2.5 seconds I was already admitted into the hospital. Once again, I hate hospitals and hearing those words, you’re admitted, is like hearing death… well, I may be being a bit dramatic but all in all, IT’S TRUE DAMNIT!

So let’s start on the horrifying, amazingly nuts this condition turned out to be. Since I did not go through with the MRI, they rushed a cat-scan for my stomach, specifically my liver/gallbladder area. What they came to find out, (which I wish they found out sooner!), is that I had three blood clots in my liver. Three of my arteries were blocked off so water and blood was seeping out into all the little areas of my body so I looked like I was either pregnant or fat. Now, to fix this little situation, they had to put stents, which are little tubes, through the blood clot to open it up. This is what they explained to my parents and me. I would be in surgery for about 5-6 hours and then they would need to keep watch of me for 24 hours because my liver might give out or complications and yes there was complications.
So let’s begin shall we? At least 15 doctors surrounded my parents and I so they could let us know how the surgery would go, of course I wasn’t paying attention because I was too busy crying knowing that I’m screwed up. They put an IV the size of a baby’s arm into my arm and I think it was the first time my father ever heard me curse someone out. I cried to my parents one last time and they rushed me into the Emergency Room.

The next thing I remember was waking up in the ICU with a couple tubes coming out of my neck, oxygen going through my nose and nurses standing next to me saying that my heart rate and blood pressure was dropping so much and they had to watch me carefully. I couldn’t speak, I couldn’t move… I felt faint and dizzy.

This gives you the beginnings. I wasn’t told what I was diagnosed with before the surgery and I had hell of an idea what the surgery was going to do to me after or how my life would alter dramatically.

Once again, thanks for reading ❤
N.Rarity

Helloooo. 

Welcome. Welcome to my journey.

Welcome to my pain.

Welcome to my life.
I’m using this blog as a sort of relief. Relief of this damn condition, possibly. You see, when you’re diagnosed with a rare disease, they forget to mention how alone you’ll feel. How no one would ever understand how you feel, what pain your in, what struggle you have to go through and no I’m not doing this for sympathy. You read if you want to read, you clicked this link because someway, somehow, you may just want to know more. You see, recently watching a famous Netflix show… one of the morals was that you don’t know what people go through. This can be your outlet as well. We hold so much back from the world just to show how strong we are, but you don’t always have to be. I thank you, for visiting, for reading, for taking time out your scheduled day just to read a blog post by someone you may barely even know. This is only the beginning of what may be something small, or something huge. I’ll leave that up to the universe to decide. 
Anywho…

My condition. My oh so rare, one in a million, fucked-me-over condition. (sorry family, if you’re reading this.) I wasn’t born with this.

One day, my body just said.. HEY! Let me just do this and badda boom badda bing, I received Budd-Chiari Syndrome with Myeloproliferative Disease with a Jakk-2 Mutation. 
Yeah, it’s that long.

No, I didn’t make it up.

No, I’m not “contagious.”

Yes, this is literally the shit I’ve had to say to people.
Let’s just say in easier terms, I have three blood clots in my liver, my blood is way too thick for its own good and I can clot anywhere in my body. I was diagnosed in April 2011. But that’s an entirely different and longer story that I will be saving up for my next post. I’m just giving you the basics. Let’s just say, I’m always tired, always sick, and I’m always in pain. 🤷🏼‍♀️ 

You’ll get to know more as time goes on. How I got it, how they diagnosed me, and whatever.

But for right now, I think I’ll leave this here as the first. 
Thanks for reading peeps.

N.Rarity