Behcet's, Vision Problems, and Prednisone?

Well, let's continue this crazy story I call my journey. If you read this and are lost check my last post! So, the emergency room doctor told me to go see a dermatologist to get a skin test. They gave me my papers, I got dressed and left the hospital. When I got home I got on my insurance website to see if the doctor they referred me to was covered. Then I realized, the hospital I just went to, where they just ran multiple tests, was not covered at all. Great. All I could think of is, I'll deal with that later, let's figure this out and get me feeling better. The doctor they referred me to wasn't covered. And I spent days and days on the phone with them trying to get the referral sent elsewhere so it was covered. They gave me the run around. I then had to call my gynecologic and I told him what they said in the ER and he THANKFULLY helped me out and got it sent to a place that was covered. Then the waiting. 

If you don't have a chronic illness or serious health problem that takes multiple doctors and referrals and tests and etc. then you might not have experienced one of the most difficult things health wise, and that's waiting. Waiting for the referral to get processed or waiting for test results. Waiting for medication to start working and helping. Waiting for bad days to pass and good days to come. Waiting for the next appointment because the doctor you need to see to help you is booked out two months or more. Calling everyday to see if there is an opening that came up. Waiting. Just waiting, in pain, scared, and feeling alone and like a burden on everyone around you. It's difficult. 

While waiting, the symptoms got worse. The ulcers healed but left me scarred physically and emotionally. I jokingly call myself senora swiss cheese to laugh about it even though it hurts physically and makes me feel less of a woman, I cry sometimes about it. And that's okay, I see it as part of my healing. But other symptoms started showing up and some got worse and others disappeared. I got pain at the back of my eyes that would radiate into my skull. It hurt so much to look too far up or down, left or right. I would feel as if I was going to black out. Then it started to affect my vision, it was getting worse to the point I could no longer drive at night because I couldn't tell how far away cars are, I just saw a blur of lights. The next symptom that appeared was joint pain. I felt (and still feel to this day) like I'm 90 years old. Like the inside of my joints were Hellraiser. Every movement was difficult and painful. Then my stomach, it was mad (if you know me this is no surprise, it's always upset about something). But it was different this time. I get these horrendous stomach cramps and would sometimes vomit. Then the extreme flip flop between diarrhea and constipation was taking what energy I had. I decided I couldn't wait any longer with these symptoms, I went and saw my primary doctor hoping for some relief until I could get in to see specialists.

Visual representation of how my joints feel in case you don't know what Hellraiser is.

My primary doctor told me I need to see neurologist and we need to get an MRI of my brain and I need to also see an ophthalmologist (eye doctor) to see if there is inflammation on the backs of my eyeballs and a rheumatologist. Then they start throwing around terms of Vasculitis (Behcet's is a type of vasculitis), Rheumatoid Arthritis, and Multiple Sclerosis and other things as well. So, we went from either Behcet's or Crohn's Disease or both to all these other options. Great. I wanted to narrow down the list of "could be" not add more options. He put me on anti-inflammatory medication and more antacids. Oh and what my doctor and I call fry sauce (because fry sauce makes everything better), Voltaren. It's an anti-inflammatory gel to put on your sore joints. Also he told me to use heat on my joints.

Then my appointments started lining up, first the gastroenterologist, then the ophthalmologist, then the dermatologist, then the rheumatologist and lastly my MRI so we could get me in to see a neurologist. My GI didn't feel like it was Crohn's but wanted to make for sure but didn't want to put me through prep again. So, he wanted me to do an MRI of my digestive system. Check what cannot be reached with a colonoscopy. The next day I was to see the ophthalmologist, I woke with a twisting feeling in my stomach, nothing new, just one of the bad days. I pushed through, got dressed and drove 50 miles to my appointment. It was in a hospital. I got on the elevator and had to get to the second floor. I got off the elevator and made note of where the bathrooms were as I walked to the office. I got checked in and paid my copay. Sat down and my stomach started turning more and more. I started feeling really warm. I honestly was worried I was going to poop my pants. I let the front desk know I was going to the bathroom and I'll be back. I dashed to the bathroom and of course, atomic diarrhea, great. The day I had to drive 50 miles just to get to an appointment..... I have the liquid poops and.... I drove myself. Wonderful. With shaky legs I walked myself back to the office once I felt safe to do so. Then they called my name I stood up and started walking then the whole hallway we were walking down, I could've sworn it was moving. The nurse looked at me and asked if I was okay. I told her I think I stood up too fast and tried to keep walking started collapsing into the wall. Everything started moving more and more. She helped me into a room and sat me in a chair and started asking me questions. She allowed me to take my mask off thankfully, I felt like I was suffocating with how terrible I felt. I then looked at her and said, "I'm going to be sick." She grabbed the garbage can in that room and handed it to me and I proceeded to vomit over and over. I felt like it was coming out of my eyes and nose. I started crying while throwing up and apologizing through vomit spells. I felt so embarrassed, mortified, I wanted to crawl back to my car and just hide. She got me some water and a new garbage bag every few min. 

The doctor came in and said there's no way we're going to continue the exam for today and we'll reschedule for another day. I went into what I do best inside my head, I started doomsday-ing myself. Great, now I have to wait longer because of my stupid body have a stupid bad sick day. I traveled so far. I paid $60 to see this doctor today and my body decided to ruin that. What if my vision keeps deteriorating and I go blind?? How am I going to get home if I'm this sick?? Is this throwing up going to stop?? The nurse asked if there was someone she could call and I told her my boyfriend's mom works at this hospital and gave her the name. She got me a wheelchair and took me to see her on the next floor up. She urged me to get checked out at the ER. I was scared and embarrassed. How am I gonna pay for all this?? But I listened to her reasoning and asked if the nurse could take me to the ER and stay with me until my boyfriend's mom could come be with me. And being the sweet amazing person she was, she said she'd be happy to.

She rolled me to the ER, helped me get checked in, and when I got into a room they wanted me to change into a gown. I looked at her and said "I'm embarrassed to admit this but I need help" with a smile she helped me change into a gown and got me all set up. The ER nurses came in to to get an IV started to get me to stop vomiting and to get me hydrated. It took a long time because as soon as they were about to try to stab me, my body would spasm and I would throw up again and again. At this point I was crying again and apologizing to them. It was at this time my boyfriend's mom came in and was there with me. I felt not so alone now. I felt okay about crying, there's something about having someone there who you trust and knows what's going on. It just... it makes things less scary and takes the burden of needing to be strong off your shoulders. Once they got the IV in they gave me Zofran and started fluids. I've never been so thankful for an IV in my entire life. I called one of my older brothers to come relieve my boyfriend's mom. He was there in no time at all and was by my side asking the questions I was unable to think of because of the extreme fatigue I was feeling. They were taking blood, doing scans, and many other things I don't clearly remember. One minute I'd be talking to my brother and then it'd all fade and I'd be asleep. I was going in and out and all I wanted to do was go home, put on my pj's and crawl into bed to sleep for a week. The most frustrating answer was they "weren't finding anything" other than inflammation in my blood tests. Yeah dude, I told you that's what all the other doctors found. He said he called my primary doctor and they made the decision to put me on Prednisone, a corticosteroid, and for the angry stomach they gave me a prescription for Zofran. I was in such bad shape and my body was suffering so much, it had to be done. It was getting worse and fast, like a out of control train going down hill on fire. My boyfriend finally was able to make it to the hospital and talked with my brother. I felt like I was in the hospital for a week but it was only 6 or so hours. I couldn't stay awake the drive home with my boyfriend.

I didn't eat solid food for 2-3 days my stomach was so sensitive and in so much pain. It was just sips of water, Gatorade and Zofran every 8 hours. I couldn't even take my medication it made me sick but also because to take Prednisone I had to be off of another medication for a certain amount of days. I called all my other appointments and pushed them out. I'll have to wait two weeks to be able to do any of my tests now. More. Waiting. Waiting for the original medication to get out of my system so I can take the Prednisone and then I'll have to wait to take the original medication again to be in less pain and when I come off the Prednisone it's going to be like hitting a brick wall at 100 mph. Then I have to wait after the Prednisone for a bit till they can run tests. Awesome. Great. I'm so (not) excited. I called my primary doctor and he adjusted the prescription slightly. I was on 40 mg of Prednisone for 5 days. No taper. And lemme tell you.... That. Was. Not. Fun. Well, being on Prednisone is a riot, you feel unstoppable, like wonder woman! Well, usually. I just felt like old me, before I got sick. It was nice. I didn't take as many naps and was able to make it to a full week of work for the first time in a little while. But I did get moon face, looked like a cartoon character.

Wow, haven't even made it to now. I thought I would make it to where I am at currently in my journey in this post but... there's just so much and writing all this has taken most of my energy that I had left for the day. One thing I'd like to say before I bid farewell until next week is enjoy now, enjoy what you have right here and now. I regret not doing so before I got sick. I was able to walk, run, dance, function on minimal sleep and hustle. I could be a go getter and work two jobs. I was going to start a second job before I got sick. But life had other plans. Celiac sucks, but I was still able to go for drives, see friends, go to parties and stay out late and be fine. But overnight, my life has changed. So cherish, live in the moment, take that dance class or go for that hike, go see those sights you want to because you never know if you're going to wake up the next day and not be able to. I'm hopeful that I will get better mobility back and will be able to see craters of the moon in Idaho and make friends with babushka's in other countries, learn to scuba dive and be face to face with a giant cuttlefish and seahorses in Australia. These are bucket list dream items. And I hold onto them, sometimes I forget and use them to doomsday myself that "I'll never be able to do that, I'm broken" but they are dreams, they are goals. They are doable. I will get there someday. And remember that too, no matter where you are in life, hold onto your dreams and don't just keep them dreams, set goals. You'll get there. I know you will! 

Until next week... Stay happy, know you are loved, and you are IMPORTANT!

~The Unicorn Warrior~