“He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.”
— Psalm 40:2
Diagnosis We Don’t Know.
Diagnosis We Don’t Know is the latest in the seemingly endless barrage of crap that keeps hitting me and my husband. What…the…*explicative*???
Okay, end of my whining. Now for the backstory (the condensed version).
My husband’s symptoms started about one year ago, shortly before we moved back to our home state. Why did we move back to our home state? My father had been diagnosed with Parkinson’s Disease and my sister with terminal cancer. My mother was drowning in three businesses, and Dad hadn’t seen a doctor since his diagnosis. He has six doctors, so that was a lot of appointments to miss.
Upon our return, Dad started to really hit his Parkinson’s and his diabetes hard, and at the same time we were proud of Dad, we were frustrated with his diseases. I developed a strong anger towards disease, stronger than ever before, and not a very healthy anger. My anger and frustration peaked when my sister passed away. I decided to focus on getting Dad through his grief and back to his fighting stance. Whereas living with diabetes was like shooting a missing target, living with Parkinson’s (PD) was like shooting at a target that you couldn’t even see. Why did he develop PD? Don’t know. What stage was he in? Don’t know. Will an extra dose a day help? We can try…don’t know we’ll see. Physical therapy. Speech therapy. My hatred of Parkinson’s was intense partly because I was so confused by it.
It was a lot of stress, all the while I’m helping Mom with two of her three businesses and Husband is finding that he can’t think straight at work. His first symptoms seemed like his old essential tremor was claiming more territory. Then he felt as if he was in a fog. Then the tremors led to soreness…then stiffness. Then he couldn’t take wide strides when he walked, so he started to shuffle. His right side became a lot slower than his left. All this coupled with the fact that he lost his sense of smell a long time ago….the list of symptoms pointed to…you guessed it…Parkinson’s. End of backstory.
The thought of my husband having PD was too much to process because going through it with Dad as was intense. Dad is a strong optimistic guy, but this disease can take down even the strongest most upbeat of people on the bad days. Not to mention fears of the future. I didn’t want my husband facing the same thing! My husband is young, so it is very rare for someone his age to be diagnosed with PD, but of course, it does happen. Nine months ago, when his symptoms were becoming too much to ignore, we went to the doctor. Then to a neurologist. Nine months of tests including blood work, an MRI, an EEG and even a thyroid ultrasound. Test after test after test. Each new appointment brought up another “It could be…we can test…” We finally secured an appointment with a movement disorder specialist who after a physical examination reported “NOT Parkinson’s”.
So what is it? Uh…we don’t know for sure. As elated as I am that he wasn’t diagnosed with a neurodegenerative disease, it’s hard to really jump for joy at my fullest capacity to jump without knowing what it is exactly. In other words, we still can’t completely rule out anything. For my husband, it has been a long process of elimination. But we don’t know what it is by knowing what it’s not…yet. This, to me, is the most frustrating aspect of brain diseases and disorders. There is no knowing exactly. The brain is too complicated for such wishful thinking. Even though we have come so far (I mean, I have epilepsy and was never prescribed an exorcism), we are still in the dark ages when it comes to the brain.
It’s frustrating to watch my husband struggle to do simple tasks or to hear him moan in his sleep. It’s downright torture. But when I start to cry out to God “Not fair!” I think of all the people who received a diagnosis and it was devastating. A lot of these people are in my family.
On top of the health-related stress the financial stress is very pressing. A few weeks ago, my toothache became pretty bad, so we found a dentist. After (almost) 30 years on earth, I had my first cavity. I was handed a proposal for a root canal and crown to the tune of $2,500. My husband was handed the same proposal in the next room at the same time. I went numb, and it wasn’t just from the three shots of Novocain it took to drill out my cavity and fill it.
People deal with cavities all the time, and I consider myself a tough lady with a high pain tolerance but it when it comes to my teeth I am a wimp. I felt so betrayed by life! I became a complete monster. I needed constant sympathy and petting from my husband, and I was selfishly angry because he was supposed to be the healthy one. I’ll deal with all the chronic illnesses, but he has to be the one to deal with me and be the caretaker and bringer of pain killers. I writhed and whined in tooth pain for two full days. I blamed everyone but myself for that. At the end of the two days, I started to sort out my monstrous behavior and thoughts of throwing things. Seriously…a cavity? C’mon. I had a toothache-induced nightmare that my jaw fell off. So see…it could be worse.
Every time I drink anything I am painfully reminded that I need a root canal. But I can deal with the pain for now. We have a lot of medical bills, but we will always have a lot of medical bills. It’s not worth it to worry about tomorrow’s medical bills. It’s difficult for me to talk (or write) about financial stress (I am a prideful woman), but I know there a lot of people out there dealing with similar struggles. They know how much time out of the day it takes to simply call your insurance provider or clinic or pharmacy. How one piece of mail can turn into two months of phone calls and hair pulling.
I don’t know where God will lead us, but lead us He must, because I have no idea what is going on right now. My husband and I have a lot of blessings to count, and in the darkest moments of utter confusion, I try to count them. We have an unwavering God who knows what is to come and is preparing us for it, never giving us anything we can’t bear, and the strength to meet our struggles. We have each other. We have parents who love and take care of us. We have friends who follow-up and ask how we are doing. We have a senior cat with impeccable dental health. I mean, the list goes on and on.
Is my life where I thought it would be right now? Absolutely not. I fight off the feeling of unfairness when others my age are able to hold dinner parties in nice homes with beautiful kids and plan family vacations. I have to keep in mind that Diagnosis I Don’t Know has given me some gifts. I’ve learned patience. I’m a lot stronger now than I was a year ago (cavity episode aside). My marriage continues to strengthen. The more strength I am given the more I can give to my husband. Most importantly my faith in God hasn’t been this strong since I was a child. My husband and I are being worked on by the Holy Spirit, and we do have a long way to go filled with obstacles, setbacks, risks and more opportunities to stumble. I’ve never felt more blessed because even though I can’t see in front of me, I know the ground I stand on is solid.