I have two beautiful children and a wonderful husband. We live in Michigan and enjoy all things outdoors. When I can find the time in between wrangling my children, I like to read and cook. You can usually find me with a cup of coffee in my hands.
My symptoms started with weakness in my legs. It was becoming harder to walk distances and go up and down the stairs. It progressed to my arms as well. I saw my primary doctor first who attributed it to postpartum stress after my bloodwork came back normal. I pushed for more testing and was sent in for a sleep study. Which was also normal. Despite complaining of weakness I was consistently being treated for fatigue/sleepiness. After several disappointing appointments I began antidepressants convinced that maybe it was mental rather than physical. I then became pregnant again and tabled further testing.
After my second was born I decided to find a new primary who was open to any and all testing. It still took about 12 months and several specialists until I had any abnormal testing. I had an EMG performed by a pain clinic “fibro” dr and the results were abnormal. From there I was sent to a neuromuscular specialist who completed another EMG and found the anti-bodies for Lambert-Eaton Myasthenic Syndrome. I have started on an oral medication called Firdapse. They also found an enlarged Thymus/mass on my CT scan and I recently underwent major surgery to have that removed with the hope that my symptoms will eventually lessen.
There’s never a day when I am not aware of my limitations. Every time I move it’s like I’m fighting a current. From the outside I’m sure most people wouldn’t notice and I suppose I’m lucky to still be able to do the things I need to in my life. I can care for myself and my children but it’s restricting and frustrating. I would love to go for a walk, take my kids to the park more, plan a vacation without the anxiety of the physical toll it will take on me. Mentally it’s a hurdle I have a hard time overcoming. It can be despairing thinking of the long term if I can’t control my symptoms.
Spending time with friends and my family goes a long way for my mental health. I find when my state of mind is good it’s easier for me to push through. Watching my diet and trying to cut out inflammatory foods helps. I try to avoid the heat, stress and pushing myself too hard. I rest a lot which is important but harder than you’d think. A lot of times I struggle with the guilt of not doing more around the house or with my children but I am beyond blessed with the support of my husband. The medication helps some, not as much as I was hoping for. I’ll be re-evaluating medications soon with my dr to try and find the best options for me.
I struggle with the physical limitations of my condition but lately I’m struggling also with the “invisible” aspect of chronic illness. I hate to complain and I’m also a yes person so I find myself often in situations where I’m overburdened. I think maybe it would be easier if people could “see” the way I feel. Then maybe it wouldn’t feel so isolating. And of course on top of it all is the medical debt/insurance cost associated with a chronic illness.
We can’t always control what our bodies do but I can try and just keep going. When it’s tough just make it through the day, the next hour, the next event. Just. Keep. Going.
Find Kayla | @Kaylaberli