Just over a year ago I was released from the hospital. I had spent nearly a month in a bed, barely able to walk. Weighing in at just over 100 lbs, I had lost 30% of my body weight which left me so incredibly weak that I could not lift my legs and walking to the bathroom left me winded. I had suffered sensory nerve damage in my back, legs, and feet, but those were only miniscule issues compared to the median nerve damage that rendered my left hand completely lifeless, useless, and numb. The cause was vasculitis.
If we want to be specific, I have a form of vasculitis called eosinophilic granulomatosis with polyangiitis (aka EGPA or Churg-Strauss Syndrome). It’s an autoimmune disease that causes inflammation in the blood vessel walls all over my body and often affects organs and nerves.
While in the hospital, I saw seven different specialists, and did 14 different types of test (many were performed multiple times), including a bone marrow biopsy and a lumbar puncture (spinal tap). I was poked and prodded all in the name of ruling out other possible diagnoses. In my already weakened state, this was unbelievably tiresome and difficult, yet completely necessary.
My medication treatment primarily consisted of high doses of steroids (prednisone) to get the disease into remission. Once we gained control of the inflammation, I did 5 months of chemotherapy (cyclophosphamide) to suppress my immune system. Since that time, I have been on an oral immune suppressant (azathioprine) which I continue to use today.
Due to my extensive muscle loss, I required a walker to get around. At first, I used a wheel-less model to get to and from the bathroom, but eventually graduated to a wheeled version, and then to a cane. Being 33 years old at the time and depending on a walker to get around was not only a blow to my ego and previous physical stature (I had once been a two-time MVP on a varsity rowing crew), but more significantly to my mental health.
Prior to my vasculitis, I would have classified myself as having a very good psychological and emotional wellbeing. Since my illness my mental health has been a roller coaster of ups and downs. I get overwhelmed with sadness out of nowhere and without warning. I am floored with emotion when I think back to my experience. What’s worse, I can’t get through a Disney movie without balling my eyes out! I watched Disney’s Inside Out, and Sadness got me real good, right in the feelers (Sadness is a character. If you haven’t already, watch it). All jokes aside, this past year has been an eye opener to me with regard to my mental wellbeing. What I once took for granted, is now something I think about on a daily basis.
You may be wondering where I am today? Only a short year after being released from the hospital, I am now back to work, playing sports, and more or less doing everything I used to! My neurologist says I’m the poster boy for vasculitis and I’ve been told by many health care providers that my recovery could not be going any better.
What is my secret? I honestly do not know, but I will share a few things that definitely helped.
I had good health habits before I got sick.
I’m not saying I was the epitome of health, but I did have good habits that included making good food choices and being active. Having good habits prior to getting sick made my recovery exponentially easier once discharged from the hospital. It meant the only things I needed to do in my recovery, were the things I already knew. I didn’t have to learn new habits or train myself to do things differently.
When it comes to food, I love my vegetables! If any of you have ever eaten hospital food you know what I mean when I say the food is terrible. Vegetables consisted of frozen corn, peas, and carrots, or the occasional iceberg salad (literally nothing else but iceberg lettuce). This is why I couldn’t wait to get out of the hospital and eat real food again.
When it came to physical activity, I used to do everything, including, hockey, ultimate frisbee, snowboarding, surfing, standup paddleboarding, running, cycling, and much more. When I came home, I was itching to be active. I couldn’t wait till I could run again. I desperately wanted to regain my body and do the things I love. I was on a mission.
Do what the doctor says!
I cannot believe how many people see their doctor or healthcare provider and do not follow through with the treatment plan! If they tell you to do your exercises, do them! If they give you drugs, take them! If they tell you to come back in two weeks, go see them in two weeks! I built a large healthcare team to support me and they say they wished all patients did what they were told. It blows my mind that people don’t listen, then complain when they don’t see results!
*My only caveat here is that I built a healthcare team I trust. You must advocate for yourself and if something doesn’t feel right, seek a second opinion.
“What it takes”
This is my new life motto. Once I knew I could recover from my illness, I knew I had to do everything and anything to get better. There wasn’t room for excuses. There wasn’t any time to waste. I had all of the support one could ask for from family and friends, and it was now up to me to do “what it takes”. If I wanted to get my old life back, it had to start with me.
I have one last thing I must acknowledge before I end. While I say this is my journey, and I say that I had to overcome obstacles to be here today, none of this, I repeat, none of this, would have been possible if it were not for the love, support, and sacrifice provided by my family and friends. Whether it was a phone call, a text, a prayer, or a visit, my people came through for me big time! They were the driving force behind me and made my recovery a reality.
It took me a long year before I was ready to share my experience with the world. Truth be told, I still don’t think I’m ready. Building up to this moment, there were so many things flying through my mind. Most significantly, was the fact that I have yet to properly thank everyone who supported me. Every time I try to do so, I get swept up in the painful emotion and memory of how my illness impacted me and those around me. To everyone who helped me, thank you. Thank you times infinity! You got me through the toughest part of my life. I am eternally grateful and am unsure if I can ever truly repay you (but I’ll try).
This article is not meant to be a sob story about how my health hit rock bottom. Nor is it meant to be a boastful story of how strong I am. Instead, it is an honest and cathartic portrayal of my journey. When I was in my darkest place, I was surrounded by many people but yet I still felt alone. I felt like nobody else could understand. I was later connected with an old friend who truly understood and shone light in my time of need. I can only hope that my story reaches someone who needs it.
Follow my journey to living life on Instagram: @ghummer
Last summer was definitely a challenge but you came through it like a champ and fought to get back your health. I was so proud of you and grateful for the entire team that rallied to support us. The team at the Integrative Health Institute were instrumental in your recovery and for keeping me going through the stress of caring for you. I am so glad you felt comfortable to share your journey here and hope that it provides others with hope and inspiration.
Thanks for sharing your story, it sounds alot like mine, although I am not up to year yet.Mine started with a couple of numb toes and fingers. By the time I was diagnosed in Nov 2016 my right leg was numb from knee to toes, left leg foot numb and right hand numb. I weighed 45kg 🙁 My eosonphil count was huge so they knew it was deinately css/EGPA. I am still disabled, I am exercising, trying to walk better but my feet get so sore and I can only use my little finger and the one next to it on my left hand which makes my job of website design a bit hard. Saying that, like you have come a long way from wheelchair, to walker to cane and now can walk short distances and had my first drive in over 10 months last week… Like you it is with the support of friends and loved ones that have helped me through, there were times of great despair when I didnt want to be here, but lots of hugs and positive people saw me through. It is good for people with CSS/EGPA to know we have gone through this and come out the other end to live a ‘normal’ life. Thank you again!
What a brilliant well spoken article. I love your get up and go attitude, you get knocked down but determined to get up and carry on. I was dx with CSS in 2013 with heart failure. Lucky to be here, also had cytoxin and prednisone. Still on pred down from 80mg to 6mg and 150mg azathioprine daily. Had spinal surgery 3 months ago due to osteoporosis due to pred use. I am determined to keep going as well, though at 67 bit slower than usual. Thank you for writing such an honest article and good luck for your future.