My Story

I thought that for my first post, I would share my health story with you all. I grew up relatively healthy. I ran track as a teenager and I was a dancer in high school. I had some health problems (I had my appendix and gallbladder removed in high school) but I recovered quickly and got back to life. About a year after graduation I got very sick with pancreas issues. The opening to my pancreas had grown closed so no fluids could get in or out causing me to be very sick. I spent a lot of time in the hospital getting fluids, medications and tests. I spent approximately 9 months of 1 year in the hospital. I even turned 21 in the hospital. But the doctors eventually figured out what the problem was and I had a surgery where the doctors basically cut the opening to my pancreas wide open and then sewed it open so it wouldn’t be able to scar closed again. After a couple weeks in ICU and a couple more in the hospital, I was finally better. But the problem was, I had been taking serious pain medications for approximately 2 years and my body was dependent. I started to suffer withdrawals. After consulting with my doctor, I spent 2 weeks in an inpatient rehab facility getting my body used to not having medication. This was a very difficult time for me. I felt very guilty that I had let my body become dependent on these medications. But after rehab and some time, I got over those issues too. I was finally healthy. I started working as a 911 dispatcher for a large police/fire department and I was also working as a security officer. I was going to school studying criminal justice and was half way through the police academy. I was going to be a police officer. That was my dream. I worked in jobs to prepare me for law enforcement and I took every possible criminal justice class I could. My dream was coming true. My life had a plan. I was going somewhere. In 2010 I started having problems with my lower back. I completed the first half of the police academy and decided to take a break before starting the second half so I could get my physical health back on track. But I kept having debilitating pain in my lower back that prevented me from walking or moving for a week or so at a time, but then I would feel better for several weeks and then I’d have another “episode”. In February 2012 I had an episode that didn’t go away. After an MRI it was determined that I had ruptured a disc in my lower back and needed surgery. I was put on bed rest for 3 weeks before I was able to have a back fusion surgery where they put a metal plate and 3 screws in my back. It took some time to heal from that surgery, but it eventually happened. But I continued having weakness in my legs and we couldn’t figure out why. My doctor said I had healed completely and normally from my surgery, but I was still having problems. I went to see a rheumatologist but they cleared me from having any problems they could take care of. Then I went to see a neurologist. During this time I started having a lot of pain in my neck, but I thought it was just a pulled muscle. I told the neurologist all of the things I had been through and all of my current symptoms, and she decided to test for MS (Multiple Sclerosis). One of the tests for MS is an MRI of your brain and cervical spine. This happened in early 2015. When my doctor got the results back, she immediately stopped treatment and sent me back to the neurosurgeon. I had 2 ruptured discs in my neck. After a lot of fighting with my insurance company, I finally had neck surgery in the fall of 2015. I had to have 2 discs in my neck removed and replaced with artificial discs. After this surgery is when my neurosurgeon diagnosed me with DDD (Degenerative Disc Disease). This diagnosis meant that the other discs in my back and neck will continue to slowly deteriorate and I will eventually need more surgeries, fusions and/or disc replacements. While I was dealing with recovering from surgeries, I kept getting weaker and weaker in my extremities. As soon as I was cleared from the neurosurgeon, I was sent back to the neurologist. I went through an array of tests including balance, eye sight, spinal tap, blood work, and the list goes on. After all the tests, it’s been determined by 4 doctors that I have serologically-negative MS (Multiple Sclerosis). Serologically-negative means I have all the symptoms of MS, but the tests show negative (patients can have the disease sometimes for 5-7 years before the tests show positive). Last year I started throwing up every time I would eat. We kept a list of everything I ate and every medication I took, and nothing was the “culprit” for making me throw up. We did a swallow test, several intestinal tests, a cat scan, an xray and blood work and the doctors finally diagnosed me with gastroperisis. It’s been hard to deal with. I have to drink a lot to stay hydrated (I get easily dehydrated and even spent a week in the hospital because of dehydration), so having a disease where the stomach doesn’t empty very fast makes drinking a lot difficult. I also take about 5 medications to keep my stomach working normal. And through all of this, I was tired ALL THE TIME!! I did several blood tests and visited several doctors, and was diagnosed with chronic fatigue. The problem with chronic fatigue is that there is no cure. There is no medication to make it better. I just have to deal with it. I take a lot of naps and deal with being tired pretty much all the time. It also has been a difficult disease to deal with. My social life has changed drastically since I am so tired. I don’t go out very often and I go to bed very early. I am just physically exhausted by early evening. So over the course of the last 4 years I received all 4 diagnoses and applied for permanent disability. After 2.5 years of waiting (and not working so I was reliant on my parents financially for everything) I was finally awarded permanent disability last summer. It was such a blessing. I remember opening the letter and reading the determination. I was elated. I started crying because it was such a blessing. I couldn’t believe that after all I’d been through, I was finally going to have my financial independence back. I thought I was so happy. But it turns out that it’s been a hard pill to swallow. It was the final reality check that this is my new life. I will never be a police officer. I will most likely never work a job again. It’s been difficult, but I’m at a place of acceptance. I still have hard days, but I’m ok with my life the way it is right now. I’m disabled. I’ve accepted that. I have to live at home because I need help with daily tasks and I’m unable to drive, but I’ve accepted that. (Luckily, I have amazing parents who help me and are so patient with me and meeting my needs.) I am back to taking a LOT of medications, and some of those are the same medications I became dependent on before, but I go to a pain clinic and have amazing doctors who help me and keep a watchful eye over what I take. My life is completely different than what I thought it was going to be, but I’m ok with who I am and what my life is. Do I get offended when someone at the store gives me a dirty look for driving one of the riding carts? Sure. Do I get discouraged at night when I have to take ALL my medications again? Of course. But I know how blessed I am to be where I’m at in my life. I’m Kayla, I’m disabled, and I’m ok with that. Instagram @kayda_a and @disabled.not.unable