Baby Steps, Baby Steps, Baby Steps...... Look at me! I'm doin it! I'm baby steppin!

First off, if you don't get the title please do yourself a favor and go watch "What About Bob" I think it's on Amazon Prime. It's phenomenal! Bill Murray is a LEGEND! Anyhow, let's continue from my last post. I got Prednisone! Yay! But also not yay, because that made the waiting... longer. The day after my last dose of Prednisone actually wasn't too bad! I still felt pretty good, till I hit a wall at about 3 pm at work and I was barely able to keep my head up and eyes open. I don't think I was drooling but I very well could have been, I felt like I was. I talked to my boss, had my mom on the phone with me as I drove home just to be safe, got home and zonked out. It was like someone hit me in the face with a shovel and then flipped my energy switch to off. Then the next day, it was bad. I thought hitting the wall was bad? Well, day 2 the wall fell on me! Every joint in my body hurt, my head felt like inside out Hellraiser, like I had ice picks or nails driven into my head and to top it off, I was exhausted. But, I was in so much pain it was difficult to even nap until my body couldn't take being awake anymore and I'd just zonk out and sleep. Thank the heavens for Doordash! It was a godsend! Ordered some Chick-fil-a that day because cooking was not an option whatsoever. On days when you need a nap after eating a small meal because chewing and digesting it makes you exhausted, cooking is not going to happen. You have to pick, you either cook something and not have the energy to eat all of it and have to reheat later (which is fine for meal prep when you're not currently ravenously hungry and seeking calories) OR you get something easy and spend the same amount of energy eating a meal and digesting it. It sucks but is a reality for people with chronic illnesses that affects their energy levels. There is a name for these individuals... Spoonies. I'll dedicate a post to that another time but in the mean time if you are curious google it!

A week after my last dose of prednisone I had 3 BUSY days, I got a brain MRI done which was a first for me. I was scared so I asked my boyfriend to go with me. Gotta say the best part is the music and the Hannibal like head cage they put you in. My go to for music is Elton John. Another LEGEND! I saw his movie Rocketman and it touched my heart and soul in ways nothing else quite has. Music has always done that for me and his story on top of it was inspiring. It gives me strength when I feel like I don't have much to give. Anyways, the following day after the MRI I had a BIG day. I had 3 appointments in 1 day and they were all 50+ miles away from where I lived. So I climbed into my hybrid and drove an hour to the first one which was my ophthalmologist (eye doctor), and yes, I went back to the clinic I vomited all over. I was nervous to go back there but I had already paid my copay for it. When I arrived the front desk was so happy to see I was doing better. They remembered me! It made me feel good, gave me some faith in humanity and in this world. Then the nurse saw me that helped me to the ER that terrible day and was elated and thrilled I came back! Multiple nurses that saw me were all commenting how they were so worried and the one that helped me to the ER wanted to call me the next day but didn't want to be creepy. During this whole journey so far I've felt a lot of emotions but lonely is for sure a big one. This moment of all these nurses and front desk ladies and even the doctor commenting how happy they are to see me doing better and how worried they were about me made me feel like I had a bigger circle of people around me supporting me, wanting me to find answers and get feeling better. I was happy to tell them I am now able to control the stomach issues with taking Zofran every 8 hours and I promised to not throw up in their office that day! They first did a routine check up and it brought me to tears. I could see like I did before February 2nd. It was amazing. I was so happy! I also got the back of my eyes imaged which was kind of interesting and not too bad. Thankfully, I had at that time NO inflammation in my eyes and I left with a prescription to get glasses. I was so excited! I went and sat in my car till my eyes went back to normal and talked to my mom on the phone about what they said. My mom, she is amazing, my whole family is just amazing and so supportive. When I've had multiple days in a row where I've been down I call and talk to them for hours while they're doing what they have planned that day. They keep me from going clinically insane! 

The next appointment I had was one I was very anxious for! It was with a dermatologist! But first..... Chick-fil-a! Yes I have a Chick-fil-a problem.... Going into the dermatologist I thought I would be leaving their office with a definitive answer of yes or no on Behcet's. Unfortunately, that was not the case. Now let me tell you a little about this annoying and horrible disease. Behcet's is a rare autoimmune disease that causes inflammation throughout your entire body. Autoimmune disease means your body gets confused and starts attacking itself, it thinks it's own cells are the enemy. Behcet's is a type of vasculitis (a general category of autoimmune diseases) which affects your blood vessels, yeah, those things you have ALL OVER YOUR ENTIRE BODY! Oh, the symptoms are even better, let's go over that for Behcet's, Symptoms include painful mouth sores that look similar to canker sores that eventually raise and turn into painful ulcers (I've had this before, it is horrid),  acne like sores on the body that are tender, big, red, sensitive, open sores on the genitalia that leave scars (ladies and gents, I've also had that. it's also horrid), inflammation of the eye that causes redness, pain, and blurred vision in usually both eyes (also had this, it sucks), joint swelling (yup this too, also sucks), inflammation in veins and arteries that cause redness, pain, and swelling in legs and arms and can cause blood clots, digestive issues such as abdominal pain (yup got that), and diarrhea (yup that too) and bleeding (ah yes, that too), and lastly, it causes inflammation in the brain and nervous system that will cause headache (had one since November 2020), fever, poor balance (falling is being added to my skills on my resume, my balance sucks now), and stroke. SCARY HUH? Even if I don't have this disease, there are people who live with this everyday. Isn't that crazy and also amazing? Those are some seriously strong people! God bless em! Well, now that you kind of understand what this disease is, this is how they test for and diagnose it, there are layers, like an onion, or Shrek. Okay, there's only 3 layers they do for it. First they run blood tests (pretty standard) then a pathergy test. So with the pathergy test they stab you with a needle and they examine the area a day or two later. If it's positive a red bump will show up where they stabbed you. This shows if your immune system is a dramatic teenager and overreacts. The great thing here is.... I had an MRI the previous day. I had already been stabbed in the arm for the contrast, so I showed her the area and there was no red raised bump or even signs of one developing. That's great! Last thing they do to diagnosis this disease, is wait........ To be diagnosed with Behcet's Disease you need to have recurring sores. So, for me to be diagnosed I have to go through February 2nd, 2021 all over again. Remember me talking about waiting in my last post? Yeah, here's another example of that waiting business. Sucks, doesn't it? So to this day, I am waiting to see if those sores come back. So I left feeling a little frustrated, I now have to wait more.

Alright onto the next appointment, my family doctor. To be honest, I was seeing him because I was battling depression from everything that was going on. I had already set up to see a therapist but I wanted his opinion on if we should add to the pharmacy I was taking to help with the overwhelming feeling of sadness and defeat. Well, I went there for that got a quick answer but also got something else. He had already gotten my MRI results back for my brain that I had done the previous day. He was not looking at me for the first bit. I had never seen him like this before, I thought maybe he was having an off day but then I realized it was because of the news he was about to deliver me. I have brain damage, symmetrical on both sides of my brain. I wasn't too surprised because I've been hit in the head a lot and I brought that up. He then finally looked at me and said trauma doesn't show up like that. I've had a stroke and I could have one again, at any time. I could wake up tomorrow or next week or next month or year and not be able to move. I was now at a point he was longer going to be able to help me but now we have what we need for a referral to someone who can help me. I need to see a neurologist. That was the last thing I remember him saying to me. He talked more but I was in shock. I thought having a colonoscopy at 24 was crazy..... a stroke?? AT 25?? (I turned 25 a week after my colonoscopy FYI). I left his office with a copy of the hospital's information they were sending it to. By this time, it was dark outside. It was about 8 pm on a Thursday. I didn't know who to call. I know my family and my boyfriend will try to solve the problem, which isn't bad. They're problem solver's, that's what they do. I needed to talk to someone to hear my noise. Hear my anger I had with the world and my frustration. Why me? Why does this have to be a thing? I was so upset and scared. I called my best friend who I called when I discovered my sores and just let it all out. I was raw, tired, scared, frustrated. I had a lot of what if's running through my mind. I sat in my car and cried on the phone with my best friend. She heard me and got frustrated and upset with me. It was exactly what I needed. Once I got it out we started to talk about next steps and made a plan. I was going to call everyday till I get in somewhere. I got off the phone with her and called my mom, she put me on speaker phone and I told my mom and dad what they found. They sobbed with me. I felt a little better but I had an overwhelming feeling of being lost. I felt like I was just running in the dark trying to find some source of light to hold onto. Some sort of hope. Something to help me fight. 

(If you are not religious and don't like reading religious things, skip the next paragraph because I'm LDS and gosh dang it, I needed help and the help I got had to do with religion)

My family and I reached out to another family in my parent's ward when I was growing up. They also have health problems with gluten and we had talked to them about previous Celiac problems. They were honored we reached out to them to give me a blessing. They told me to come to their house. I called my boyfriend and let him know the situation and that I was going to be getting a blessing and would let him know when I was on my way home. I arrived at their house around 10 pm and they spoke with me, gave me the hugs I needed, and comforted me. Then they had me call all my family members and place them on speaker phone so everyone could be apart of the blessing I received. It was as if a warm blanket was wrapped around my shoulders. I felt calm. I wasn't less scared but I felt like I had a light to hold onto. I can do this. I have such a loving group of people. And to this day that wonderful family checks in on me to see my progress and what's going on and if there is anything I need or anything they can do for me. AMAZING! 

I drove home that night and was completely drained. I was ready for sleep. I wanted to see my love, I wanted to see my boyfriend, lay down in bed with him holding me and cry myself to sleep. The next day, a Friday. I had to fast for my MRI of my GI tract. I was so numb. Drinking the contrast was dreadful. Tasted terrible. But it didn't bother me as much as I thought it would. I was still stuck on yesterday's news. They had to stick me 4 times to get the IV in this time. And lucky me, I got it in the hand. But again, this didn't bother me as much as it normally would have. Once that was over I drove home ordered Chick-fil-a (like I said, I have a Chick-fil-a problem) and stayed in my bedroom the rest of the day and most of the weekend. The only time I left was to eat and when my boyfriend dragged me out of the house to the store which is what I needed but was wanting to just sit in my sadness.

The following week on Wednesday the 17th of March I woke early in the morning, before even my boyfriend woke up for work. Everything was in slow motion. I can't speak. I can't move. I'm just awake. I can't communicate. I started getting a strange sensation on my left side. I started getting scared. Am I having another stroke? I can't speak, I can't move! How am I going to wake my boyfriend up? How am I going to call the ambulance? It felt like forever, I couldn't go back to sleep. Then my boyfriend's alarm goes off, it's 5:00 am. He gets up quietly to not disturb me and goes and gets ready for his day. I wanted to scream help but all I could do is watch the shadow of him get up and walk to the door and quietly leave the room. I felt tears well up in my eyes. They started trickling down my face. That's the only thing I can do right now. I am physically unable to do anything else. I could hear him taking his equipment to his truck and getting ready for his day. I started to give up on being able to get help. Then my boyfriend came to my side of the bed to kiss me goodbye for the day I was able to move the right side of my body a little at that point and words were difficult. He could see the fear and worked with me a got me up and I watched him put my socks, my warm boots and put the jacket he had been wearing on me to keep me warm. Then he took me to the hospital. This was one I had never been to before and will never go back to ever again. It was the worst experience I had ever been through. While we were driving there I started to be able to formulate and speak but it was slow. I also got the first of the shovel to the face pains. It was as if Rapunzel herself smacked me in the left side of my face with her frying pan. I started crying more it hurt so bad. When we arrived my boyfriend was carrying me in the hospital and I was unable to walk. They didn't offer a wheelchair or anything. They were as cold as the 30 degree morning outside. They put me in a room and my boyfriend helped me in a gown. The doctor came in and checked my reflexes and had me smile and checked my strength in my hands, legs and arms. Then he sat down and said "Well, what do you want me to do?" I looked at my boyfriend confused and then looked back at the doctor and asked "I had symptoms that were concerning so I came to be checked to make sure I was okay." The doctor looked at me and said "uh huh, okay. Well what are you here for? Prescription drugs? You just here for pain killers?" Even though we all had masks on I could see my boyfriend was fuming but he was biting his tongue. Confused and honestly feeling insulted I looked at the doctor and said "I'm not here for drugs. I've been having health issues and they told me if I had these symptoms to go to the hospital to be checked. Well, I had those symptoms and I am now here to make sure I'm okay, I'm not here for drugs. I'm here to make sure I haven't had a stroke or something is going haywire in my brain or spinal cord or somewhere else." Both the doctor and the nurse were very insulting and were saying that it's impossible for someone of my age to have stroke and I probably slept funny or something like that and all they could do is give a shot of Toradol (NSAID shot) and sent me on my way. When we got to the car (yes my boyfriend was carrying me because I still couldn't walk) my boyfriend wanted to take me to another hospital but I felt so defeated, hurt and angry. I just wanted to go home I was exhausted from trying to prove that I was having health issues and needed to be checked. I didn't care enough about myself at that time to go somewhere else. I insisted he take me home. I was done. I didn't care what happened to me. Just take me home. I stayed in my bedroom all day. I eventually regained the ability to move my left side but it was weaker than it was before. How dare a doctor accuse me of coming to the ER for narcotics. I don't have a history of drug abuse. I never have. I choose natural remedies over medication if there's an option. I was fuming and also hurt. Then I started doing what I do best, I started doomsday-ing myself. How am I supposed to get help if they just think I'm there for drugs?

The angry side of me felt like Lady Catherine from Pride and Prejudice

Even though I had that bad experience, I got some good news. My gastroenterologist sent me letter letting me know IT'S NOT CROHNS DISEASE! Everything was clear! So, it was nice that something got crossed off my list of "could be" and it was such a great feeling! That gave me hope! The next thing that gave me hope was I FINALLY got a call from the rheumatologist's office and they got me on the schedule but it was over a month and a half out. And while I was on the phone she said someone canceled and I got an appointment just less thank a month out. Thank god! I'll take it! And a couple days later I got a call from the neurologist's office and got on the schedule. This brings us to April 2021 in my journey. February was rough and March was terrible but I was hopeful for April. I have shared a lot in this post. I am going to save April for the next post. The first of April I saw a rheumatologist and the last day of April I'm getting a spinal tap. Kind of crazy. 

Stay happy, know you are loved, and you are IMPORTANT!

~The Unicorn Warrior~