HOW IT ALL STARTED

 HOW IT ALL STARTED

It was a Saturday in March. I was done with my evening shower. After combing out my hair, I reached down and ran my fingers over the rug in front of the sink to gather up all the loose hairs that land from combing and styling my hair every day. That night it felt different. My fingertips were numb. It was a weird sensation. The weirdness continued for several more days. It wasn’t super noticeable unless I was doing the hairy rug thing, but as someone who has seen a chiropractor since grade school, I decided maybe a trip there might fix things. 

My chiropractor had a couple theories on what might cause numb fingers, so two or three visits followed over the next few weeks. Unfortunately, not only did it not fix the numbness, I was also noticing some new strangeness. 

You know that back and forth motion you do after you shower and are drying off your back? That shimmy with the towel that starts up by your shoulders and ends down by your butt? I was struggling to make it all the way down. My arms refused to make the shimmy motion by the time I hit my mid back. It didn’t really happen all at once. It seemed to be getting difficult and worked up to just plain not being able to do it all.

Now what the hell was this about? To be honest, I didn’t even really think much of it. Not for awhile anyway. In kind of stayed in the back of my mind as “well that’s kinda weird but whatever”. It didn’t really affect my life in a huge way, other than my backside not being totally dry, lol. 

By the time the end of April came around though, I was starting to notice more serious things. It was harder to open jars. Plates seemed heavier. I was noticing stairs seemed to be a little harder to climb. I was starting to freak slightly. So I made an appointment with my PCP who I had only seen once due to my doctors kept leaving. I recall going to the appointment hoping the doctor would have an idea about what was going on. She did some strength tests and said she did notice some weakness in my arms and said she’d like to order an MRI but should probably start with just x-rays so insurance would cover the eventual MRI order. So began my hate-hate relationship with insurance and the healthcare system in general. 

The x-rays didn’t show anything that would explain my symptoms. Nor would the MRI they did at the end of May on my upper spine. 

Things were getting weirder. And scarier. I needed the handrail to pull myself up stairs. My drawer at the bank I work at was getting too heavy for me to put back into the vault slot because it was higher than my shoulders. I work with mostly 20-somethings and nothing makes you feel older than asking a youngun to lift a simple cash drawer for you. I didn’t dare bend my knees to get something low because there was no coming up. I am a co-leader of a Girl Scout troop and we took the girls to a local lake to canoe. I didn’t even consider going in the water. If I fell in I couldn’t even dog paddle to save myself. I wasn’t thinking and squatted to help push a girl off in the canoe and ended up sitting there like a duck until my co-leader paddled back to shore to help me stand up. I sat in a lawn chair and waited till they came back, considering the fact that if I even tried to stand I was close enough to the edge that if I stumbled and fell in, I would drown. 

June was a bad month. We scheduled a family vacation to Galena for a few days to get away and I just wanted to get through it with nothing terrible happening. Every week there seemed to be something new I couldn’t do. We got through it okay and even had fun. Did some hiking with goats and survived. I might have needed an arm for support, but we did pretty much everything we wanted to. 

After we got back it was late June by then. I had another MRI scheduled for my lower back this time but I knew it wouldn’t show anything helpful, and I was right. At this point there is a neurologist involved looking things over. There is a decision made I need an EMG. This stands for electromyography and assesses the health of muscles and the nerve cells that control them. I would need to go to a Peoria to do this and they scheduled one for me. The only problem was that it wasn’t until mid August. No amount of pleading could get me in any sooner. It was one of the tests they put a stop to during Covid so now that they were offering them again, the list was a mile long of people needing one. 

I was at the end of my rope. At this point I had taken a leave of absence at work. I no longer felt safe there. I couldn’t sit down without making sure there was something near to pull myself up with so the bathroom at work was out. Couldn’t get coin from my bottom drawer. Felt unsteady walking. At home I needed assistance standing up from the couch. I needed help getting dressed. I couldn’t even wash my own hair. My arms would not raise any further than my shoulders. My family was THERE for me. My 10 year old helped me put dishes away. She took over some of the laundry. I remember breaking down one night, miss drama queen, which I rarely am. Ran, well no, running was not an option anymore, more like shuffled to my room and slammed the door. My daughter followed me and in a parenting moment I am not proud of, I proceeded to lay it all out about how scared I was, how I had no idea what was going on or how much worse it was going to get. She patted me on the back and with such certainty, told me it would be fine. We would find out what was wrong and would fix it. My heart! And my husband took on more roles around the house. You don’t expect having to be helped getting dressed at my age. And having your hair washed for you? He didn’t even blink an eye. Did my daughter put away dishes and do laundry like I would? Did my hubby wash, dry, comb and mousse my hair like I would? No and no. It was frustrating but I was grateful. 

July 2nd I met with a nurse practitioner in my PCP’s office and ended up in tears, trying to convince her I needed this EMG now, not 6 weeks from now. I was convinced if I had to wait until August, I would need to be carried there because I was sure I was not far from being unable to walk anymore. She was no help. An EMG is not considered an emergency test and there is no cutting in line. 

Our neighbors are wonderful people we are very blessed to live next door to, and one evening at our mutual friend’s house they were shocked to see I needed pulled up from the chair and started a personal quest to help me. Their daughter called me and having had to deal with her own medical issues over the years, told me my best bet was to go plant myself in a big city emergency room and insist to be seen. 

My BIL has a friend who works in pediatric neurology at Rush University Medical Center and had her call me one night. She listened to my symptoms and all my problems and said she would talk to someone in neurology there and see if they could get me in. It wasn’t a hospital covered under our insurance but by then we didn’t even care. We just wanted answers. True to her word, I got a phone call a few days later and had appointment at Rush July 7th. It would be a day that would change my life.