The Faces of Guillain Barre 2017: Day 29- K.C.

Monday, May 29, 2017 0 Comments

I had a healthy baby girl at home in the end of September 2015. On November 4, 2015 I noticed I wasn't feeling right and went to urgent care because I couldn't stand up without feeling faint. I was sent home diagnosed with vertigo however it started to get worse and I began having tingling and numbness in my limbs. I went to the ER about 5 different times. I had numerous MRIs, CTs, and bloodwork and everything kept coming back normal. 

Most every doctor I saw said it was post partum related but I knew it was far from it. At my worst I could hardly eat and it was difficult to swallow. I almost wanted to give up finding an answer but a good friend drove me to a bigger and better hospital in the middle of the night where I was given a spinal tap and then later admitted. They suspected gbs due to my elevated spinal proteins and I was given IVIG. It took 2 weeks before I finally got any treatment. They said I had a mild/atypical case and I would be better in a few weeks. This has been far from the truth. I have struggled with waxing and waning symptoms for 7 months and while I am improving it is very slow and I still have days when symptoms come back. It was a difficult thing to experience because I got rejected by the medical community so many times before I was taken seriously. I was afraid to hold my daughter because my hands were very weak during this time yet somehow I was being told it was in my head. 

At my worst I had bladder dysfunction and irregular heartbeat and blood pressure. My blood pressure would sky rocket and one night my heart rate dropped into the low 30s. It was a traumatic thing to go through because I didn't get a whole lot of support and I was very scared and alone in the hospital. I am doing much better and able to do a lot of everyday activities but some days I have to take it easy and most nights my hands and feet will have varying degrees of numbness. 

The mental part of it all has been the most challenging. I've had to find strength I never knew I had and I've had to accept the unknown which is incredibly scary when it's your health at stake. I am much more understanding of people who fight invisible illness on a daily basis and only wish more doctors were more empathetic for their patients. I hope to use my new knowledge to help people one day but for now I am enjoying being a mom of two beautiful children. Every day is more precious than ever before and that is the hidden blessing that occurs when you face a serious health issue. To the world I look completely normal and even looked normal while sick since I was never paralyzed, yet internally I honestly think my body was fighting the hardest it's ever fought. I realize how often we take our bodies for granted and in a second it can all change. Ive always tried my best to be healthy; eat healthy, think good thoughts. But sometimes bad things happen and there is no explaining it. 

I am much more aware to how fragile life really is and as a result I am trying to live in the present more than the past or future. It's a good lesson to learn but almost always at a price. I am glad to be more in tune with my body and not feel guilty for taking days of rest. We should all be taking care of ourselves more and enjoying each day because anyone can be struck with illness at any time. I also think spinal taps should be routine in ERs when people present with neurological symptoms. It would have saved me 2 miserable weeks and might have resulted in better recovery. I've discovered that gbs is far from textbook. Why can't doctors be forced to read out stories?? Not only would they be learning to empathize with us but they would also be aware that there is variability in diseases and syndromes because everyone's body reacts differently. Hopefully some of you out there will find comfort in reading my story and if you are in the medial field I hope you learn a little about the importance of empathy. 

My strength and stamina are mostly 100% back most days. I only feel remnants of gbs when I overly exert myself whether it's physically of mentally. My last neurologist appointment he said I have autonomic neuropathy so I guess my case of gbs focused mostly on my autonomic nervous system. It's been a journey but I am thankful to be living life and living fully. It definitely changed my perspective on living each day to the fullest. 😊

 K.C. Sweet
Date of diagnosis: 11/16/15
Hospitalized dates: 11/16/15-11/26/15
State/country: Washington/United States