What It’s Like to Have a Rare Disease

What It’s Like to Have a Rare Disease

Today is Rare Disease day, so I have decided to talk about my rare disease! I have Guillain Barre Syndrome!

Many people have never heard of Guillain Barre Syndrome (GBS), it is a rare and serious auto immune disorder that is incurable. For many it goes undiagnosed since it is so rare. It can be onset by the flu shot, a viral infection, under cooked chicken, or bacteria that can be found in lake water. Your immune system attacks the sheath of your nerves leaving you paralyzed. Some cases are mild and some result in complete paralysis or death! There is NO Cure for GBS only plasma treatments (IVIG) that try to help slow the progress of the attacking of the sheath of your nerves. Flare ups become a part of your life and the scary thought of a complete relapse is there everyday. I thank God everyday for my amazing doctors who caught this right away and started me on my treatment before things got worse! 

I want to share my story with you, when I was 28 years old my whole life changed, until November 2014 I was healthy my whole life. But in November 2014 I started to just not feel well and my life changed overnight. I started to have pins and needles in my hands, then my feet, I was tired, I had muscle craps, then I started to have back pain that was the worst pain of my life and finally I started to have trouble walking. I thought I had just hurt my back doing something around the house so I made an appointment to see a chiropractor. I went a few times but it wasn’t helping I was getting worse. On the advice of my work wife Laura I made a sick appointment at my primary care doctor’s office, because as she put it “this is not just back pain its something else”.  Actually what she said to me was “you look like you are walking with a shit in your pants! I am not walking around with you anymore, you need to go to the doctor! If you don’t make the appointment I am going to make it for you!” (Thanks Laura!! You saved my life!)

So I had an appointment for “back pain” and the next day I went to the appointment and from there I was told they thought I had Guillain Barré syndrome but everything else needed to be ruled out! I cried as they listed all of the things that could be wrong. I’ve worked in the medical field for years and knew the seriousness of each issue that they listed (tumor, brain hemorrhage, stroke, etc.). I was sent to the ER, from my doctor’s office and because the seriousness of it all was not setting in I told them I could walk the block to the ER they laughed at me and told me they called a cab. I sobbed on the phone to my work wife and told her to meet me at the ER 4 blocks from our office! I also called my roommate Shelly who jumped in a cab and came right away too.  I could barely walk but hobbled into the ER where we waited for hours to be admitted to the hospital.  I don’t remember this but I was told the longer we were there the more I slurred my words. As we sat in the ER they ran no tests but took blood and kept telling me I couldn’t eat or drink anything and they couldn’t give me anything for the pain. I was annoyed but kept thinking at least they are admitting me. If it wasn’t for Shelly being with me I think I would have lost it.

The next day I met my neurologist Dr. Sami Khella, he was amazing! I was started on IVIG before my results came back, because he didn’t want things to get worse.  I went through the spinal tap (words can’t describe this pain) and from there it was confirmed that I in fact had Guillain Barré syndrome. I did 5 days of IVIG, it was awful!  My veins couldn’t handle it and collapsed, and my IVs needed to be changed daily. I was a pin cushion!

I struggled my whole stay at the hospital. I struggled to walk, to bath and clothe myself, to make my hands work, through pain that I can’t even explain.  The one thing that made my time in the hospital bearable was that I was never without visitors, whether it was my family, my friends, or my then boyfriend (now fiance), I always had someone with me! My doctor recommended that I be sent to a rehab for physical therapy but because I am strong-willed and determined I proved that I could be discharged home! I thank God I had the support of an amazing roommate and friends, who made this possible, I couldn’t imagine going to a rehab then.  Looking back now it may have been better if I had gone because it was hard being home. I had a lot of pain and could not do much for myself!

The first year was rough! I went through a lot of physical therapy, 3 days a week for months! I struggled with sleep and with nightmares!  I would wake up in the middle of the night from a nightmare almost nightly. With my heart racing and covered in a cold sweat. What was I dreaming about? It’s slightly different each time but either someone is knocking on my hospital door for a blood draw, or I was having pain; feeling like I was being stabbed, or that I was struggling to walk again and sometimes I just wouldn’t remember what I was dreaming about but I just wouldn’t feel right. Once I was up I struggled with falling back to sleep, because my heart was racing, and I felt like my body was crawling with pins and needles. My pins and needles are/were worse when I am tired, late at night when I’m trying to fall asleep and early in the morning or when I am overly hot or cold. It still drives me crazy.

The list of things GBS had taken from me that first 6 months was endless. Before I got GBS I ran every day; literally and figuratively. I’m late all the time so I always seem to be in a rush. But I ran for exercise, to work, to have drinks & dinners with friends, to events. To sum it up I was always busy. At one point before GBS I was working two jobs, was in school and had an active social schedule. The first year, my life looked very different then what I was “use too”. I could barely work my one full-time job. I couldn’t run, walk for long distances or time, wear high heels, or see my friends as often as I use to because I was too tired and weak to be able to do those things. I took my days hour by hour, listening to my body, and how I am feeling. Some days I could barely make it through 5 hours of work without wanting to go home and climb into bed because I was exhausted and was in pain. On those days forget about the extras; cleaning the house, taking a yoga class, going out with friends, I just couldn’t do it. When I had social obligations I learned I had to plan, to make sure I got enough sleep, hydrated, took my meds, made sure I had extra meds with me and to be mindful and listen to my body. As soon as I started to not feeling well, I would sit, I would take a break, and shortly thereafter I would leave. The next day I would recover by lying on my couch and doing very little. Again, before all of this I didn’t stop. Before all of this I was a night owl, during the beginning of my recovery I was in bed by 9, and I needed 9-10 hours of sleep a night to function the next day.


To say I miss my old life somedays is an understatement and I struggled everyday to get use to a new “normal”. A little over 3 years later I still cry somedays, especially if I am feeling like I can’t cope or I’m feeling overwhelmed. At the beginning I forget stuff all of the time, I struggled at work, I struggled to keep up walking, I was angry because I am told to stop doing things I loved, I was frustrated because I can’t do the things I use to do. These were all reasons that I cried and I just wanted to be me again. And I guess at the end of the day I cried because I didn’t not know what my future held. I was nervous about getting on with my life, of starting the next chapter by bettering myself with a career move or enrolling in school because back then I can’t do more then what I was doing at that time without being tired. I didn’t know if I would ever get rid of that feeling of not feeling well, or the pins and needles or nightmares or the not knowing if I would be the me that I was or if I had to get use to this new me. At the end of the day to say GBS has changed my life dramatically, is an understatement.

For a long time, I felt like it changed my life in a negative way but I started to change my outlook on the situation. I began to start feeling that while it was not “fair”, I was one of the lucky ones! I was walking, I was trying and I was surviving.  I choose to not take for grated small things, and to stop waiting for the “one day”. I have taken huge leaps in my life quitting my stable & secure job (that I hated, it was crushing my soul) and went back to school to get my Master’s degree in Social Work. I graduated this past May and passed my boards! I got a job doing something that I find purpose in and I love doing! And through all of this I am just trying to live my best life, one day at a time and one step at a time! Because as corny as it sounds, it could all be taken from me  tomorrow, because tomorrow is not guaranteed!





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