A Life-Robbing Disease

Since June of 2015, my life has evaporated. Those of you who know me know that I am usually a bubbly social butterfly, sometimes erupting like a shaken coke can when I’m around my friends. I’d rather describe my job title as executive CEO of the Mohr household and community volunteer than “Stay-at-home” Mom. Stay at home? Whatever. I don’t “stay at home.”

I’ve always been the classic “over-achiever.” You know, the annoying teacher’s pet in college who was always asking questions from the back of the room. I’ve always been involved in a lot of things and leadership. More often than not, I bite off more than I can chew because I don’t like to say “no.”

Here is a description of my life prior to TC disease. Due to some other ongoing health conditions I have, I haven’t always been able to do everything I want. With my struggle of bi-polar disorder, depression and Fibromyalgia, I’ve had cycles good times and bad times. But, on my good days, I enjoyed cooking when I had the energy. I volunteered weekly at Conner’s school helping kids read. I was always at everything at Jackson’s preschool. I went on field trips. We went to church. We were a part of a Sunday School class for parents of young children and I went to Mom’s group on Fridays. In the summers, we took the kids to Dollywood, Splash Country, Chattanooga’s Creative Discovery Museum, the zoo…many places. I took Conner to Lego Camp and golf lessons. I bought several Groupons to take the kids to several places over the summer. We had playdates, went to kids’ birthday parties. I went out with friends for girl’s night out. We had friends over. We had birthday parties for the kids. We took the kids to neighborhood events. I was the founding Chapter President of my local alumni chapter. I organized events and served on that board after my office term was over. I was actively in my chapter of the Daughter of the American Revolution. I published a short story. I was recently appointed to the University of Tennessee Alumni Association Women’s Council by the President of the National Board of Governors. For little ole’ “stay-at-home” Mom me, that is a huge honor. (Fortunately, it’s a three-year term so I haven’t completely missed out on the opportunity.) I am the secretary of my neighborhood HOA Board. I was asked to serve as the President of my son’s school PTA to revitalize the program that had fizzled out. I tutored Spanish and English high school students several times a week.

Here is a description of my life after TCs. The only relief I have is staying in bed off of my feet. Lifting anything remotely heavy is not an option. I get out of bed to go to the bathroom, take a shower or bath (Ok. I’ll just say it straight up. I skip a few days sometimes,) change my clothes, make sure Conner is at the neighbors in time for his ride, fix myself simple quick food, help the kids get ready for bed. We have a mini-fridge upstairs in the bathroom where I can get myself food and drinks. My son Jackson lives with my parents, and has for the past 4 months, except for weekends because I can’t get him into his car seat, drive him to and from pre-school, take care of him, lift him, potty train him, change him, or fix his snacks and drinks. My neighbor and my husband take or pick up Conner from school. I only go out if absolutely necessary because the backlash of pain is unbearable. I have a lot more doctor’s appointments. I used to be able to drive myself, but now, driving more than 10 minutes hurts. More often than not, someone has to take me. When I do go to a doctor’s appointment, it takes me at least 2 days to recover. I don’t cook. My husband does all of the housework, cooking, cleaning, has a new job and brings me my food in bed. It hurts to sit at the table. It hurts to sit on the couch or the recliner. It hurts to sit, stand or walk. I don’t go anywhere. My social life is limited to the phone and the internet. Any work I do with any organizations I used to be involved in is over the computer or phone. I can’t go to any of those anymore. It’s an isolating disease.

But so far, for the past 5 months, I’ve been in good spirits because I’ve seen God’s hand working in this and he has been winking at me all along the way. I’ve still be busy working on some things I can do from home. And, it’s given me a lot of time to slow down and focus on my spiritual life. I’ve met some amazing TC women from around the country and world who I speak to regularly and we all encourage each other. I have learned to keep track of the blessings I am thankful for and focus on praying for others in need. Choosing to focus on other things is a conscious decision I made that keeps me from sitting here feeling sorry for myself.

I have never experienced pain like this. I've had lumbar back pain for years, but my symptoms grew very rapidly within a period of five months. It's been worse than having babies and my gall bladder surgery! I was fine and then one day I wasn't. I was having some pain in May but it would go away in a few hours. My pain varies at different times but the worst and most debilitating is the kind that feels like a deep deep sensitive toothache. Sometimes it's been so bad that I'm literally writhing in the bed in pain.

At first I thought it was my back and visited my chiropractor. Then, I thought maybe it was my feet so I ordered arch supports.  I tried stretching that area and my hips, using a foam roller, pelvic tilts, TENS unit, ice and heat therapy, massage, Prescription strength NSAIDs, prescription anti-inflammatory medications, prescriptions such as Lyrica and Cymbalta that are supposed to help nerve pain, prescription muscle relaxer, and narcotic pain medication. I had spinal manipulation, decompression, ultrasound and other treatments from my chiropractor. I started Physical Therapy. No conventional methods of treatment help.   

I can’t touch the pain. I feel like if someone is touching me, they are bruising me. It feels better when I sit in the fetal position. It’s better if I lay in bed and don’t lift anything and stay off of my feet. My tail bone also hurts if I put pressure on it so now I have a sweet Granny Tushy Cushy!  I have twitches and spasms in my legs.

At first I could predict the pain because I knew if I was on my feet at all for a few hours, I would have backlash when I got home. But now I can't even predict it anymore. I'm terrified to get out of bed because I'm so afraid of having to deal with the horrible pain that comes on later. Sometimes it hits the same day, later afternoon or evening, worsening at night. Sometimes I don't hurt until the next day and wake up with it. It also seems to get worse when the weather changes.

To say that this disease is life-changing is an understatement. It is life-robbing.

I’ve seen God work in my life many times, but never like this with so many crazy miracles one right after another. “BAM! BAM! BAM! In your face! I am here!” It has strengthened my faith, kept my spirits ups, and I feel that God has demonstrated His power through this due to so many people praying for me and to show that He can beat the odds. He is faithful. Honestly, I don’t believe that everything that happens to us is “God’s will.”  I don’t believe God “lets things happen to people.”  Look at all of the evil in the world. He has given humans free will and life has NEVER EVER been easy. God never promised it would be either. I don’t believe there is a divine purpose behind everything that happens in life. I do believe that God can take our worst moments and turn them into blessings, whether it be to others or ourselves. I know He can turn our weaknesses into strength. After all, I’m a huge blabber mouth! God knew I would share my story with others and He has the power to turn this whole experience into something positive.