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Sunday, February 8, 2015

My story: UPDATED: 6.28.16

For those of you who don't know the story behind my getting sick...

I was never diagnosed with Cushings, or even thought that it could be an issue. No one ever suggested it to me, I never researched it. When I started the rapid weight gain, my first doctor told me that I was fat and I needed plastic surgery to correct the problem. When I asked her about my buffalo hump, she told me that I had that because I was fat.
I worked out like a crazy person, three hours a day. I lived off of salads and yogurt! I never thought this would be my life...

In April of 2010 I was starting to have blackouts. I've always struggled with migraines, but these were really bad. I was even forgetting who I was, where I was, how I got places, nothing was making sense. In May, I went to the emergency room because I started to black out while I was driving for work. I asked for a CT to be done on my head. The ER dr just gave me tylenol and told me to go home, that my headache was was just that, a headache and I was just stressed out. He told me to take the next day off of work to rest, so that's what I did. Maybe I was too stressed out from work, I mean, I was a county caseworker, I had a crappy boyfriend. Maybe I was just too stressed out and that's what was getting to me.
Bring me to the following week where I blacked out, fell down the inside steps at my house, went out the front door and went out the outside steps. How this happened, I still don't know, but that's what happened. My brother took me to the er and they said i had a bad sprain so I had to miss work. AGAIN. And of course the rumors were flying. The girls at work were saying that I was missing work because I wanted to spend time with my boyfriend, that, get this, he was going to take me to the beach ON A SLED and pull me around. ARE YOU FREAKING KIDDING ME? DO YOU NOT KNOW WHAT A DOUCHE HE WAS? I swear. I worked with some AWESOME people! So, resting I was. And then I was walking on it. But, I was walking funny. A couple of the girls at work convinced me to go back to the foot doctor, so I did. Guess who actually had a BROKEN foot? yeah. the hospital MISREAD the xray. Nice, right?
So, he casted me and told me to stay home for a few days. AGAIN. I was home AGAIN. They were really starting to love me at work. So, after being at work for a few weeks, I started to get charlie horses in my leg. I called the drs office and the receptionist told me that they were normal and to take my painkillers. Did she put me through to the nurse? No. She decided to take it upon herself to answer my questions. Well, a few days later, I had a fever and was throwing up so I DEMANDED to be seen. He saw me, actually had no idea I was even coming in and took my cast off. Did a pressure test and sent me across the street to have a dopplar done. Turns out, I had BLOOD CLOTS in my leg. So, the dr gave me some shots, taught my mom how to do it and then sent me home. Told us that if I had pain in my chest that I should go right to the emergency room. Well, I was an asthmatic. I ALWAYS had chest pain, so how would I know the difference?
I took advantage of having my cast off. I gave myself a pedicure, shaved my legs and then the next day, we went BACK to the emergency room, where... you'll never guess what! BLOOD CLOTS in my LUNGS! YAY ME! So, I was there for a week. Then, I was home for two because I still had a broken foot and my dr was on vacation and he couldn't clear me to go back to work. So, I FINALLY went back to work and the headaches were starting again. I called the pharmacy where my sister worked and her pharmacist told her to have me call my dr right away. (I was on coumadin and they wanted to make sure I wasn't bleeding in the brain) So, I called my Dr and he had me come in right away to do a catscan. Well, no brain bleed. But, I did have a tumor on my pituitary gland and brain atrophy. What a great day I was having. So, I went for an MRI to confirm what we already knew. My dr, my NEW dr (the one who discovered the blood clots, the brain tumor, the man who, in essence, SAVED MY LIFE, Dr. Degler) had put a call into the neurologists office and set me up with an appointment to see him in a week or so. I can't remember. What I DO remember is having a headache so bad that I had my parents take me to his office and FORCING him to see me. (It didn't hurt that his nurse was  my lifelong best friends mom) So, he saw me and do you know what he told me? That THE HOSPITAL MISREAD MY CATSCAN! The tumor had been there the entire time! He had no idea how they hadn't seen it and it had continued to grow! (now we're in July) He gave me a shot of tramadol and then gave me a list of tests that I needed to have done. He told me that I had plenty of time to have them all done.
Yeah... so much for that theory. 
He called me around 7 that night and told me that I had an appointment on Friday with the neurosurgeon because I couldn't wait. The tumor was pressing on my optic nerve and I was lucky that I hadn't gone blind yet.
*Funny story. As I was walking around on my misdiagnosed BROKEN foot, I had gone to six flags and ALL of the upside down roller coasters were not working.*
So, I met with the neurosurgeon and he told me that there was a blood test I could do to see which kind of tumor it was to see whether or not it had to be out within the next three days. I failed the test. So, I needed it out. I woke up fine. Then the next day, I had no vision in my right eye. (Later we would come to find out that he had nicked my optic nerve. ) I was in the hospital for 13 days. Shaved head. Blind. But making friends with all the nurses. Oh, I had had a crainiotomy. That's the way he decided to hack into me. (Because of what he did to me, he has since retired)
He sent me to his brother in law, the endocrinologist, who was worthless. He told me that there was no way I could have cushings. No one had cushings. And that I was just fat. I needed to stop eating. Gosh, I just love these doctors!
And then I come to find out that the tumor isn't gone! First, he told me that the MRI was completely clear, that he got it all and that it wasn't going to come back. But, I wanted a second opinion. We sought out a new neurosurgeon at Thomas Jefferson University Hospital in Philadelphia and found Dr.Moshel (who has since moved to a different practice). He was a godsend! He did a new MRI on me and found out that I still had a tumor, that the MRI that Dr. Daneshdoost (old guy) did still had a tumor on it and that this one had grown and wrapped around my carotid artery and down my sinus cavity. He was going to save me! He and Dr.Degler had directed me to Dr.Vengrove at LVPG Diabetes and Endocrinology and he was a godsend! He listened to me, he diagnosed me with cushings, he had no idea why no one didn't before. His entire staff was so kind and caring. I actually started to cry when I met him because I finally met someone who was listening to me. I finally had a team of doctors who were going to work together who were going to save me! So, I had my second surgery in April, a transphenoidal sinus surgery. He had to leave some of it in because if he didn't and pulled it the wrong way, I would have lost all facial movement. Our next step was Proton Lindic radiosurgery. Well, it killed my tumor, but didn't kill the Cushing's. I had to wait two years to see if it worked. Nope. So, That brings us to December 6,2013. The day I supposedly got my life back. I had a bilateral adrenalectomy. (had both of my adrenal glands removed) You can't live without your adrenal glands so now I'm living on replacement hydrocortisone and fludrocortisone. The weight started to fall off, but now I'm at a plateau. I still feel like garbage. Some days, I wonder if the surgery was worth it, even though, I know that it was. The Cushing's is gone. I'm praying that it stays gone. I don't say I'm cured, I just say that I'm in remission. One day there will be a better cure for Cushing's than destroying us. I can't work. Some days I can't even get out of bed. This disease is nasty. And now? Now I'm primary adrenal insufficiency, which is scary in itself. This disease could kill me, too. Some days I wonder why I was chosen to live this life, but if I keep sitting around and wondering why, I'll never live. So, I just have to keep pressing on. One day there will be a cure. I just hope that maybe my case was one that teaches the doctors something new, maybe helps them find something that can help them find that cure, or maybe help someone who is struggling with this disease better understand it and be able to get the answers that they need.


So, it's november and if you've been keeping up with my blogs you know that i posted one about the day i lost my sight... well... guess whose sight has gotten a hellua lot worse?

in september, i had noticed that i needed to start taking my glasses off to use my phone. scratch that. BEFORE that even happened, i came out of the shower and almost screamed when i saw my face in the mirror. my bad eye, the blind one, the right one, was COMPLETELY SHIFTED TO THE RIGHT. LIKE ALL THE WAY. LIKE IT WASN'T MOVING. well, it did move when my mom told me to look to the left, but it was STUCK. i was completely freaked out. i was also experiencing severe eye pain. to the point where i was eating dilaudid and tylenol 3 like candy. it was bad. so i made an appointment to see my internist to see what he thought. he was no help. at all. he actuallly made me feel worse. i left there with a higher pain med rx and feeling defeated. i actually started to cry when i saw my other doctor. just... completely lost it.


i went home feeling sorry for myself, and the pain meds didn't even work! so, i went home cried some more and then BAMO a few days later, i wasn't seeing anything. my GOOD eye completely dilated, my eyelid drooped 3/4 of the way down and i had to walk using my cane. my mom called my neuroopthalmologist and he had me come to philly right away. they ran some tests on me and i was admitted to the hospital to make sure i didn't have an aneurysm or a new brain tumor. exciting right? well, none of that BUT i DO have third cranial nerve palsy. what is that you ask? it's when your eye has a stroke and blood and oxygen can't get to it. tcnp is one of the worst ones to have because it affects all of the muscles that makes your eye look up, down, left, right and the eyelid. i am typing this with my eyelid taped up. it's the only way i could do it.

i can't see my lap top anymore so my mom got me this nifty tablet and her friend got me an ebay gift card so my aunt ordered me a case that stands up with a wireless keyboard. pretty fancy, huh? at least i can attempt to start writing again! this is killing my back though...

back to my story

so, i went back to my internist for the pain (ny sister drove me. i'm on driving restriction until this clears up... which we're hopeful it will...) and he put me on morphine which seems to be doing the trick. for the headaches at least. and the eye pain. i still have break through ones, so for those, i'm allowed to take my other stuff. basically, they need to legalize medical mary jane in PA. idk if it would help me, but i'm willing to try anything at this point!!

on this new journey, i did meet the awesomest new eye dr. he specializes in nerve palsys. he gives me new eye exercises to do every time i see him and he helps us keep the hope alive. if my palsy doesn't correct itself by next october, there are surgeries i can have to lift my eyelid and reposition the bad eye. so.. there's that.
  we even took a creepy halloween selfie because we were both dressed up at my appointment. seriously, how many doctors do you know that do that? i truly have been blessed with some awesome medical care!

so, i pretty much always look like i'm winking at you. my youngest nephew, he's 3, came over to the house and it was the first time they had seen me since all this had happened, he just kept on winking at me. it made me sad. it was cute, but it still made me a little sad at the same time. i really can't explain it.

i've been really sad a lot lately. i know i'm blessed. and people have been coming out of the woodwork to support me, flowers, birthday surprises, and it's been wonderful but ya know... it's like... when is the shitstorm gonna be over? when is it gonna finally be my turn to relax and not worry about my health and just say, ok. i'm ok. life is good. i am free. i can see again. no worries.

when? everything was going so well for me! it doesn't hurt that i have pretty much the WORST COLD EVER in the history of my life right now and i have to be super cautious that i don't go into adrenal crisis because i have a compromised immune system. damn you cushing's/adrenal insufficiency!! i just cannot win these past few months! at least i'm getting to spend more time talking to my best friend. and i have had some pretty good things happen to me. i do have a good life. it's just, i'd rather not be a sick person. i'd rather be healthy and working. and be complaining about my job instead of the fact that i'm losing my sight. or however you'd like to look at it.

i stayed home for the first  week. i let it take me over. but then i said, fuck this shit. i have a life to live. and then i slowly started going out and going to the store with my mom and my sister and got practice using my blind girl stick. restaurants were another feat altogether. i refused to go out to eat. i think my first time eating out was Halloween at my friend's wedding. i just kind of went for it. i was so nervous. eating was/is pretty difficult. i have no depth perception and well, i can't see what i'm doing.

i still trip over things. so if you're with me you NEED to tell me when there are things in my way or if there is a step. if you are the ONLY one with me, you need to stand on my left side and let me lock my arm through yours because i need to have a sight guided escort at all times when i'm out and about. because, well, duh. and don't walk too fast. i can't keep up. and if this is too difficult for you to comprehend or to assist with, then, we don't have to hang out. i already have friends who don't hang out with me because i don't have money and because i can't physically do what they do and i can't drive so... really... are they friends? that's a damn good question.

anyway. this tape is hurting my eye so i think this is about all the update i can muster. but, i think i did pretty good for my first time typing since the whole palsy thing and not being able to see this ghetto computer! (i can't wear my glasses because i can't see the screen with them on so everthing is kinda blurry but kinda not}

xoxo. livehard.lovestrong.never EVER lose hope!

UPDATE!!! 6/28/2016

hello my lovelies! so, would you like to know where i am now? almost a year has past and i am a completely different person! i never thought i would be where i am right at this very moment, but i am still alive. i am still breathing. and guess what? 


It started happening on Christmas eve! merry christmas to us! it was beautiful! i was even able to wear makeup! it's just been getting better every week! 

i have had days where it would swell and close back up but, thanks to my amazing opthamologist and the girls that have been working with me for vision therapy, i have been making leaps and bounds and i am happy to say that I AM ALIVE AND I AM SEEING AGAIN!!

the picture on top of this one is what i look like as of right now :)  
this collage is my journey over the past 6 years and what you all have stuck by me with. what we all have been through together and what you all have been reading up on.

i know i havent been posting much... really nothing since i posted almost a year ago. im going to try and change that.

if you guys need me, hit me up on insta @colebear06 and ill try and guide you the best i can <3

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