Answers

During this time, my strength had managed to decrease exponentially. Unable to stand for more than a few minutes without my legs collapsing, showers were no longer possible. We had a garden tub in our master bath that had a side to sit on, and stairs. My husband would lift my legs over the edge to put them in. He then would wash my hair and help me to bathe. Then we’d drain the water, because just being in the warm water seemed to drain me. After I’d recovered a bit, he’d help me to inch my way back to the edge, and he’d help me get my legs back over and then into a robe where I’d lay in bed for 2 hours to recover.

Walking was next to impossible, I fell almost daily. Chewing took on new challenges as I was unable to chew bread, anything crunchy or with texture. I’d eat yogurt, scrambled eggs, (which still required me to use my hand to force my jaw up and down). I found that anything that required chewing would require me to drink something at the same time to soften the food. However, as often as not, the process of trying to balance solid foods with the liquid would cause me to choke as I inhaled the liquid.

My family doctor had sent me to specialists at OU Medical Center. A resident saw me and she ordered a bunch of tests. When she found out that no outpatient testing was done, she said “well, it’s more serious than chronic fatigue syndrome and I can’t think what it would be, so I’m going to say MS till we have proof it’s not.” She scheduled me to come back in Mid March.

A few days after we’d spoken with the GI doc, we were at Children’s Medical Center for an EEG, so that before we met with the pediatric neurologist, the EEG would be done.

The next Monday, March 9, 1992 we went to see the neurologist. I was completely unable to dress that day. D had to help with each step of the process.

We arrived at CMC and checked in. They took us back to the exam room. I sat in the corner, barely able to move, talking took so much effort that I left it to D to explain why we were there. The doctor asked us to get him out of the carrier for an examination and D got up to do so. I got a judgmental look from both the nurse and the neurologist. They had no idea I was as sick as I was, they thought I just was on disconnect.

He talked to us about the seizure and explained that it hadn’t been epilepsy. It had been because his throwing up (which B decided that since he’d demonstrated for everyone else, he might as well demonstrate for the neuro as well) had been so severe he’d not gotten enough oxygen and that is what caused the seizure. Having been a child that would hold my breath till I passed out and then had a seizure, I was familiar with the process.

He was concerned that his muscle tone was poor. That he’d not developed past the new born stage at all. While the seizure did not concern him, much else did. He wanted us to return in 3 weeks. He gave us some exercises to do with him.

The next morning, I woke up, D got B out of his crib and we both headed to the living room. D was going to change him and then give him to me to feed.

We have a few pictures of this, my feeding him. I did not hold the bottle. I held him and was unable to hold the 4 oz bottle. My coordination was gone and it took way too much strength to keep my hand in place. Someone would place him in my arms, and put the bottle in his mouth, prop it with a cloth diaper. I would hold him a little ways out, if I cuddled him close, he’d stiffen up and refuse to eat.

There is little that has ever caused me to feel like a complete and utter failure except my son refusing to allow me to hold him close. I did not know it at the time, but that was an important clue as to what was facing us.

Holding him toward the end of my knees one hand under him, the other holding his foot and a cloth diaper to hold the bottle. Hoping that we’d time things right to get the bottle out of his mouth and him sitting before he threw up was quite the battle.

D was changing him while I went to the bathroom. I came out and turned to sit down. I could no longer sit, but rather braced my legs against the couch (or chair) and dropped. D was changing B on the floor where I’d be sitting on the couch. As I turned, I felt my legs collapse. My arms went between me and I landed in an arch over my son.

I wrenched my shoulder, but my son was ok. I’d arched enough in the fall to protect him.

This shook me to my core. I could have seriously injured my son. We’d planned on taking my mom out to eat to thank her for her assistance with S during the end of the pregnancy and hospitalizations. We kept thinking I’d feel better tomorrow. We decided that nothing was changing, so we’d take her out.

That night, I went to leave the house to go to dinner with my family and My legs would not allow me to step down that first step. My mom and D decided to help me by getting the couch cushions for me to drop down on. They guided my fall, then helped me to butt scoot down the stairs. They both helped me up, loaded me and the kids into the car and off to dinner we went.

We came back to my house and I was unable to move my leg to get up to the stairs. Between my wrenched shoulder and that, D and Mom decided it would be best for me to go to the ER. I did.

A doctor we’d seen several times with S was there. He examined me and was visibly worried. He told D that he’s been watching me decline over the last 2 ½ years and we need to find out what was wrong. He was going to admit me.

He called the Medical School and they said “she has an appt send her home”. He then said “I’m admitting your patient, get your doctors down here.” I had no idea at the time, but Dr. R probably saved my life.

A resident came down and examined me. He said he thought he knew what was going on, but wanted another opinion. He called another resident down and would not talk to him he wanted a non biased thought. So, the second resident examined me. When he was done the first came over and they looked at each other and without blinking both said, simultaneously, “Myasthenia Gravis”