A Life Changing Event- A New Diagnosis
Multiple Sclerosis Journey

A Life Changing Event- A New Diagnosis

The next time you are hiking, or just taking a jog, stand back for just a second and feel the world around you. In that moment, even if it’s just a moment, you don’t feel emotion. You only feel the world around you. You feel at peace.

This may seem boring to some, because it is pretty detailed, but I really just want to go through my experience with all of you through MY eyes. So if this isn’t your muse, come back sometime next week, maybe I’ll have something that better acquires your taste (:

This whole life changing ordeal started at the dawn of a new day, just like any other day. I was on my way to clinical, but something was really…off. I parked my car, and got on the shuttle bus that took us students to the hospital. I kept brushing it off. Maybe I was tired. Maybe I was anxious.

It was our first day on our new clinical rotation. Our instructor showed us where to put our things and gave us our assignments for the morning. ‘I’m fine. We went to the zoo yesterday, the sun was constantly beating down on me? Maybe that’s what’s wrong.’ I pushed through the day. I was having a difficult time driving to the point I just wanted to pull over and walk. Being as stubborn as I am, I wouldn’t, because that would mean something was wrong. Nothing was wrong with me. I was fine.

I made it home, safe. A sigh of relief embraced me as soon as I walked into my home.

“How was it?”, asked Anthony.

“It was alright. Maternity isn’t my thing, but at least I know a good bit after having two babies!”

“Mom!” Jordan was always so excited to see me when I got home. Even when I would take a quick trip to the grocery store, he would act as if I was gone for 3 days. Arlo was giggling away on the floor, playing with his toys. You can’t help but admire their innocence.

It still nagged me. Maybe I just needed a nap.. maybe I’m just stressed out…

No nap for me. The kid’s energy bar was all the way full. I went about the rest of my day as normal. I still kept noticing…something. I remember how excited I was to go to sleep that night. I truly convinced myself that all I needed to do in order to fix this, was sleep.

I awoke again the next morning, bright and early for clinical. It didn’t go away like I had hoped. It was back. Maybe even worse.

I shook it off again. Maybe I’m crazy? Maybe what I’m seeing isn’t really there?

I had an unrelated eye appointment the next day, to see if I qualified for laser eye surgery. I called after clinical and told them I was having issues with my vision. They said that was fine and they would inform the doctor.

I was so unsettled.

I’m a nurse, so I know when something is wrong with your vision, it’s a red flag.

I’m a nurse, so I know you never turn to Google for medical questions. I didn’t care at this point, I needed to know what I was dealing with. I began the search…

…A detached retina? A brain tumor? A concussion? Lyme’s disease?

…Did I get hit in the head? Jordan is rough on me sometimes when he plays…

…The dog had a tick last week, maybe I have one hiding on me somewhere?

…What about that ‘Monster’s Inside Me’ show on Animal Planet? Do I have parasites?

I’m a nurse… So why can’t I figure out what this is?

The next day, I woke up to go to class. No clinical today, just an easy classroom day. I awoke, and began getting ready. I jumped in the shower, and midway through shampooing my hair, decided I wasn’t going to class that day. My vision still was gone, and I didn’t want to have Anthony take me to class. It would alarm him.

I did have Anthony take me to my ophthalmologist later that day. He dilated my eyes, tested the pressure, and shined a bunch of lights in them. The usual. He left the room for a moment, and I anticipated that when he returned, I would have my answer as to what was wrong. When he did finally come back to the room, he said, “Everything’s fine, your eye is healthy, no issues.”

I felt sick. This isn’t fine. It can’t be nothing..it has to be something. I felt angry, and I still just hoped it would go away at this point. I just ignored it, as hard as that was. The rest of the day, I just prayed it would go away.

The next day, there was no change. I was still having visual disturbances. We went up late Friday evening, to the ER. I was placed in a room, the nurse asked me some questions, I told her what was going on, and waited. Anthony and I were watching Shark Tank and joking around while we waited. The doctor entered, did a quick neuro exam (for my non nursing friends, he basically tested reflexes, looked for any weakness in the limbs, checked my pupils, ect). I told him I was to the eye doctor and nothing was wrong with my eyes. “Well what will probably end up happening is we will need to get you an MRI, which is next to impossible on a Friday night, but I can probably get you a CT scan tonight.” Fine by me. Just tell me what is going on.

I went back for a CT scan not long after, and did some more waiting. He finally came back in a good while later. “Well, the CT is normal. Just some sinus thickening. So for now, try to get some rest, and if the problem persists, or gets worse, come back.”

I complained to Anthony on the ride home, “Fabulous. Two medical professionals later, and I have zero answers, and nobody seems concerned.” I started to think of all the assessment data and diagnostic procedures we already did. Nothing is wrong with my eye…and nothing on the CT but some sinus thickening.. maybe it was a sinus infection! I had just gotten over a cold. Maybe it was just a sinus infection. I turn to google again, and it tells me this is rational, and I believe it. I would have believed a scam e-mail stating I was going on a free cruse at this point.

I waited until Monday, and went to Faster ER. At this point, I convinced myself all I needed was antibiotics for a sinus infection (which is another reason why you never turn to Google). I was called back quick, and told the nurse everything that’s happened and that I was hoping this was just a terrible sinus infection. She finished up my intake information and sent the doctor in not long after. She introduced herself and asked what brought me in. I did a quick run down of the past few days. “Well what tests did that eye doctor do with you?”, she asked. I told her just the standard. Nothing crazy, and he said there was nothing wrong. “Did he actually test your peripheral vision?”

…No. (Why didn’t I think of that?)

“I’m going to give him a call, and I’m going to see what your CT results said if I can find them, and I’ll be right back.”

I think it’s crazy that a computer knows everything from any medical facility that I’ve ever been to. How everything is all connected. Every medication I’ve ever taken. Past medical history. Doctor notes. Every cold. Everything.

When she came back, she had instructed me to go to my ophthalmologist’s. That they were expecting me. “Are you sure it’s not a sinus infection?” I had to ask before I went. I knew at this point, it was definitely something serious, and I just couldn’t handle the truth. I’ve always been healthy. Anything to comfort me.

“Well, no I don’t. I think it’s something neurological, but I can’t tell you what it is exactly.” I was scared at this point. The tone of voice she had. I’ve heard it before. They use that tone when they talk to patients about something serious. I felt my heart rate go up, and my vision almost blur. I knew we were close to finding out what this was. I just wasn’t ready.

We did the peripheral eye exam not long after my arrival. Jordan was upset he couldn’t sit on my lap. ‘Mimi’ wasn’t cutting it today. I always have to laugh when we tell Jordan he’s going to see ‘Mimi’, because he has no idea which one. He loves them all. He doesn’t care which one. I always loved to go to my grandmas’ when I was a kid too. I don’t know what it is, but it was always a good day at grandma’s.

The ophthalmologist entered the room. I felt uneasy. No chit chat, it was straight forward, “I don’t like what I see.”

The actual result from my peripheral visual field exam. The darkened area in the lower left shows the areas where I couldn’t see. (This one is just of my right eye, but the left is almost exactly the same.)

What they discovered was, I was unable to see out of both my eyes in that same spot (the darkened areas).

So I wasn’t crazy or imagining it. I really couldn’t see.

I was kind of relieved that we now had SOMETHING that showed exactly where I couldn’t see, but I also felt very uneasy. Now what was going to happen? Would they have to do some kind of brain surgery? Would this go away on it’s own? What’s causing this? There were just so many unanswered questions.

“So…what can it be?” I knew better than to ask him, I knew he didn’t know. I was trying desperately to waste time at this point. I still wasn’t ready to hear what was causing this. I knew it was very bad. I wasn’t ready. “It can be..a lot of things. It can be a tumor, too much spinal fluid, brain swelling, migraines, literally a lot of things. I’m sending you to the ER for an MRI. I’ll call ahead so they know to expect you. Good Luck.”

Good luck. You feed me a list like that and leave me with ‘Good Luck.’ There was nothing that he mentioned that was a simple fix. They were all horrible. I sat quietly on the way there. I wasn’t thinking. My mind was just blank. I accepted during that car ride that I had to prepare myself for the worst. I tried to keep as calm as I could. I took in all the sights on my way there. There was a man getting out of a really fancy car on Main Street. He was in a suit, and looked nervous, I assumed he was on his way to an interview. There was a little girl skipping holding her mom’s hand, she stopped and pulled her close once she got to the end of the block. I often wonder who sees me and I never notice.

We arrived at the ER. I told my mom just to drop me off at the door, her and Jordan could go wait at my grandma’s since we had to get Arlo after I was done. I thought about how much my grandma must be enjoying the baby’s company. She never got to bond with Arlo like she did with Jordan. I looked forward to hearing about it from her later.

They got me checked in and I went back for the MRI. I only had one before this, and I remember it was when I discovered I was somewhat claustrophobic. “Any metals on you or in your body?” he asked. “Nope.” I checked myself thoroughly. I signed a few things, and he gave me some ear plugs. I forgot they were so noisy. “What if I get freaked out?” He handed me a wash cloth and a call bell type of thing. “Just squeeze that and I’ll talk to you over the mic and see what the problem is. Place the washcloth over your eyes, hopefully it will be an ‘out of sight out of mind’ type of thing.” In I went.

It took 15 minutes, but it felt like 2. They took me back to the ER room I was in. I waited awhile. My phone reached 5% and I didn’t have my charger. I saw the doctor walking around out by the nurse’s station. Is he reading my results yet?

I watched some TV but I couldn’t tell you what I watched. I avoided my phone. I never felt so anxious. I ripped at the skin around my nails. My mind went into overdrive. I kept replaying what the eye doctor said in my head. I pleaded with god to make my sight come back. So I could just leave and not deal with this suspense. I just wanted to be home.

I remember locking eyes with the doctor as he walked by my room. I knew he didn’t mean to do that, I could tell he was almost avoiding me. He knew what it was now. He was preparing himself.

About 10 minutes later, he finally entered the room. It was time, and I still was not ready. I have always believed each and every one of us has a purpose on this planet. I don’t know if I just have really high hopes for myself, or if I truly feel that I was met to do something huge. “…so we got the results back from the MRI. It shows two small lesions in your brain..” I can not tell you how many horrible thoughts flooded my mind in a millisecond. He was about to tell me what he thought it was moments after, but my goodness, it felt like an eternity. What the hell is a lesion again?

“These lesions are typically associated with Multiple Sclerosis. Do you have any family history?” I shot back before I could even think, in a tone a lot calmer than I thought, “No. Nobody.”

What is that again? We just learned about this in school.

“I’m admitting you. We need to figure out what’s going on exactly. Do you have any questions?” Too many to name. I just can’t spit them out. “No.”

I was surprisingly calm. I recalled all the information I possibly had on multiple sclerosis. This is that thing… it attacks your nervous system I believe. I took care of a guy with this before. He was in a wheel chair, and he couldn’t talk well, and had special eating utensils. I also remembered, he was in his 20’s when he was diagnosed. I remember how bad I felt. He had a family, with young kids at the time of diagnosis.

I got myself worked up in an instant. I felt like vomiting. That can’t be it. I have my babies to take care of. I can’t do that if I can’t walk, or talk, or in my case, see. I called Anthony, he left work and was on his way. I called my mom and told her what he said, “That can’t be it, isn’t it hereditary?” I couldn’t remember. I knew absolutely nothing about it. It was like all knowledge vanished from my memory.

I brushed it off after awhile. They still have tests to do, and though he’s a doctor, he’s not a specialist.

I got to my room. I did my clinical on this floor, for med surg. “Do you need help getting into bed?” the aide asked. “No… I’m okay.” I felt everything but okay.

“Well, if you feel dizzy or weak push this button right here.” I’ve seen only a million of those. I never let on I’m a nurse. I know when my patients tell me they are a nurse, I get nervous sometimes, and I don’t want them to be nervous. It’s a horrible feeling. So I always keep it to myself unless they ask what I do for a living.

Have you ever had one of those dreams, where it just feels so real, nothing about it is dream like, and you either want to wake up or you never do. That’s how this felt to me. It was a nightmare. I needed to wake up.

They all arrived together, and relief washed over me. Jordan was excited to see me, only to leave again in a short while. He crawled up on my lap and I put cartoons on for him. I kept trying to hold my shit together. I don’t like to be emotional. It’s taboo, but it makes me feel weak. Like I’ve lost.

We all talked about what it could possibly be besides Multiple Sclerosis. I felt like we were right back to square one, and I was now happy with that. Right before everyone left, my mom hugged me and I lost it. I told them how scared I was. “Whatever it is, we’ll get through it, okay?” My mom knows just the right thing to say. Anthony stayed with me. I cried a lot. I don’t know what I rambled on about. I just know he sat quietly and listened, and spoke as necessary.

I remember speaking to the night nurse. I told her I was a nurse, so she knew I would understand anything she said. She comforted me with her words, “They don’t sound convinced that’s what it is…they have a few tests scheduled for tomorrow to find out the rest of the facts. Don’t be worried yet. Even if they say one thing, maybe another hospital will say another.” Meaning..no matter what, get a second opinion. I was fine with that. That’s what I planned on doing anyways.

The next morning, the neurologist was in bright and early. He introduced himself, and he asked what I know so far. “I was told that I have two lesions on my brain that are associated with Multiple Sclerosis.” I studied his face, trying to read him. “Well, that’s just it. You’re a tricky one right now. The one lesion is near your LGN nerve, which IS typical of MS, but the other is deep in the brain, and it’s NOT typical of MS. It’s more associated with a stroke. Any family history of MS?” This again? “Nope.” He did a more thorough neuro exam, and looked at my optic nerve even, as best he could. “Okay, so we have two tests today. The one is a more thorough MRI, one with contrast and one without, and we also have a lumbar puncture I would like to do to help role out Multiple Sclerosis.” So he didn’t think it was Multiple Sclerosis after all. “So do you think I had a stoke then?” This was probably the one and only time in my entire life that I had hoped I had a stoke. “Well I don’t know just yet. The MRI is definitely looking like more of a stroke to me, but then again we still have some tests to run. If it is a stoke, we need to figure out why you had one at such a young age. If it’s MS, we need to take it from there.” So much relief washed over me. I figured, I may have had a stoke, but at least I’m not stuck with this forever.

I had both tests shortly after that. First the MRI’s, which took close to 45 minutes, then the lumbar puncture. It was nothing like getting an epidural. It was numbed like an epidural before that needle was inserted, but it HURT. At least this way, we will know for sure, there will be no unanswered questions.

The nurse entered my room. “I have an IV to hang for you, but I want to double check these orders. I won’t be long.” I wondered what it was. Nobody mentioned anything about an IV. She came back in a short while later and hung a bag of Solu-Medrol, 1,000 mg. “You talked to the doctor?” I was a bit worried. “Yes, he said it’s correct. This will run over an hour.” 1,000 mg of a steroid for an hour?  “Why am I getting a steroid?” I asked, trying to express as much concern in my voice as humanly possible. “I think it’s because of the lumbar puncture maybe. I did call the doctor and made sure it was correct though.” Well at least there’s that. I couldn’t eat anything after that. Food tasted absolutely horrible.

We sat around watching TV. Nothing else to do. “Anthony? Tomorrow we’re going to find out what this is. Tomorrow we find out the rest of my life or a simple fix. I’m kind of nervous about that.” He hugged me tight. “I love you. It’s going to be okay, no matter what happens.” Will it though? Hopefully the results were in tomorrow. I just wanted out of here.

I awoke the next morning at five o’clock. The neurologist would be in around six with results. Not long after I woke up, there was a knock on the door. It was a doctor from my primary physician’s office. I had only met him once when Jordan had an ear infection. He introduced himself and asked if my vision returned. “No. Nothing.” I could feel tension almost. “Well sometimes the steroid takes awhile to work. Sometimes up to twelve weeks, but results are typically seen before that.” My vision? That’s all I need is a steroid? “Why do I need a steroid?” he took a step closer and closed the door part ways. “Well, we give steroids to reduce the effects of a relapse of MS.” I felt my face get hot. “I thought he was leaning more toward stroke yesterday?” I didn’t have to wait after all. “According to his notes, he’s now thinking you have MS.” I don’t remember much else from his visit, I just remember it was brief and I brushed it off.

Six o’clock, right on schedule. I hear a knock on the door. “Kaylee, good morning. So why don’t we go out here to my computer and we’ll chat about the results from your MRI.” I woke Anthony up. I knew no matter what, I was going to forget some important details said. Always better to have two sets of ears than one.

The computer was so slow. He joked about how he would hate to make drawings. I am normally not a serious person. Ever. I just wanted to get right to the point. He finally pulled the images up and showed me the lesions. One was very large, in my occipital lobe, which was the one leading to my vision loss. The other in my thalamus, much smaller, but there.

I do not remember what he said word for word. He kept the tone of the conversation very constant. No emotion. He explained that he believes now that it is Multiple Sclerosis.  I don’t remember what I said. I don’t remember anything. All I remember after that is that I felt numb. I felt tears stream down my face. He left the room, and that’s when I lost it. I abandoned all hope at this point and went hysteric. Not the type where you throw things around. Just in my head. The only way you knew was to hear me whisper to myself as tears streamed down my face. Anthony just hugged me. I  can’t remember what he spoke. I didn’t need to.

I had another dose of Solu-Medrol and was suppose to go home after another MRI. I was to be a magnet before getting the hell out of here. I asked frequently about my MRI. I longed to be home. Nothing else right now.

First night staying in the hospital. You have to make the best out of every situation!

After hours of waiting, the evening nurse entered the room. She told me that there was a mix up this morning and I cannot get my MRI until tomorrow and they would like me to stay one more night to avoid insurance issues. I didn’t care. What’s one more disappointment, right? At least I didn’t have to go to the doctor’s office now to get the last dose of my steroid. The nurse was very concerned about the steroid. She had wondered if they planned on tapering me down. I completely didn’t even think about that. I was so concerned the first day, now 3 doses later, I don’t have a care in the world. I had asked the neuro doctor later that night if I needed tapered down. He didn’t feel it was necessary.

I was fine with it. The less invasive procedures the better.

At this point, I was out of hysterics and back to reality. I went to sleep, somehow. I was so excited there was now light at the end of the tunnel. I would be out of here tomorrow. Finally.

The next day I had made an appointment at the neurologist’s office to hear the “official” results of the MRI and lumbar puncture sample. All that was left now was the MRI.

I was called down, we ran through the same pre procedure protocol we have the last million times (so it felt), and in the tube I went.

I went home that day, finally. The next week was full of misery as I came down off the steroids. I felt really disoriented and became anxious over everything. At this point, I wasn’t sure if it was the steroids or the disease. Being a nurse, I knew what Multiple Sclerosis was, but I didn’t know what it was like to have it. After about a week, I felt normal again.

During the hospital stay, I had to miss the rest (that was allowed) of my clinical days, and I missed a lot of class. I almost decided that a leave of absence would be best, but stubborn me completed school for the semester, and I’m now on summer break. I barely passed, but I did, none the less.

Who knows? Maybe my purpose is to find the cause of this disease, and maybe even cure it. Perhaps repair the plaques that are left on the brain. Maybe God wants me to have this because he knows I have the knowledge to cure it, but I wouldn’t have even thought about it without having it myself? The Lord works in mysterious ways, and after my short 23 years, you kind of pick up on the ways that he does work. Just kind of. He is all knowing, and I am not.

After the math, I was put on a drug called Copaxone to prevent relapses. It’s a subcutaneous injection that I give myself 3 times a week, and I have to follow up in 4 months to see how I’m doing. In 6 months I go back for another MRI. I am planning on getting a second opinion eventually being as how serious this is. For now, I’m back to my normal self, playing and adventuring with my family without limitation.

Multiple Sclerosis is called the “snowflake” disease, meaning that each victim of MS is going to have their own unique disease process. This is exactly why I say, live for the moment. Tomorrow is NEVER promised!

I have something to fight for, everyday.

Thank you for listening (:

Xoxo,

Kaylee

 

P.S. If I ever get a hold of my MRI’s, I’ll have them posted! (It may be my own brain, but I thought they were fascinating!)

 

 

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8 thoughts on “A Life Changing Event- A New Diagnosis”

  1. This was a great reed! I read all the way to the very end. i wish you the very best and hope it all works out 🙂 God has an amazing plan for us all!

  2. Wow! This is a very thoughtful and moving piece. It makes me be more aware of my own body and to follow up on simple hunches. Thanks for sharing.

  3. Kaylee, your post is very eye-opening as to how important is is to listen to your own body. A really good emotional read. Thank you for sharing. I truly hope all goes well, and will say a prayer for you!

  4. Kaylee, This was such an eye opener of how “tomorrow is never promised”. You are a very wonderful hard working lady. I will follow your blog. It must of been hard and so very scary for you and I hope treatment helps. I have another friend who has MS she’s doing better now but your right everyone is different.

    1. No two individuals will follow the same path. I have high hopes for myself and all others out there fighting this disease. The cure is out there somewhere, but until it is found everybody needs to hold onto their faith and keep fighting.

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