1991

Christmas Day brought another high fever and another ER visit. More antibiotics and this time, a nebulizer. S continued to develop quickly. He showed an early sense of humor, smart, funny and coordinated.


In Febrary, I experienced one of the most humiliating experiences of my life. I went to the family doctor to get a diaphragm. It seemed to make the most sense for birth control. With a sick baby and not feeling well myself, the idea of another child was truly frightening.

I went to the doctor and he went to fit me for a diaphragm. He fitted me, then had me show that I could actually get it into place. I had a hard time squeezing it, having no idea that it was muscle weakness that made it impossible. For 30 minutes I struggled to insert it properly and finally, the doctor decided that if it was this much trouble, it was not appropriate.

He talked to me about going to a new doctor, a different doctor to see what was wrong. I dismissed it. I was just ‘depressed’.

He prescribed me birth control pills, reluctantly. Not knowing what was wrong, introducing hormones to the mix was not his idea of good medicine. But weighing that with no birth control, it seemed the better option.

In March, S got strep throat and ear infections. Another night in the ER with IV antibiotics, and exhaustion like I’d not known before set in. A few days later I took my very sore throat to the doctor. I had strep as well.

I told him that for the last month, my fatigued had multiplied. Getting through S’s ER visit was next to impossible. Taking care of him after that, was a true feat. There were days that I literally could not step into the shower.

I was having more trouble chewing, frequently choking, my jaw did not seem to want to stay in place. He sent me to an ENT to see what he thought about a disorder where the jaw instead of being too tight, was too loose. The ENT said it was definitely Lax TMJ, probably because all my joints were loose. (a problem from birth). He prescribed valium ..which is often used with TMJ. I still don’t know why it was given for LAX TMJ.

I got significantly weaker, struggling to change my sons clothing, lifting him into the high chair was next to impossible, but most of the time he could climb up himself.

In April, I received a phone call from a dear friend, my ex sister in law V. She was crying. Her ex husband had died in a motor cycle accident. V & G had been very close with my ex, R, and I. V and I had maintained a friendship after my divorce. G had moved away, and come back. He was the father of her son and had finally taken responsibility. He was also a neighbor of mine and our friendship had renewed.

I went to his funeral thinking “I’ll be ok as long as I can’t see R or V” The usher sat me right behind them. Which V told me later was a huge comfort to her, to have R and I so close to her. I was fine, till I saw R trembling from crying, then I started which started V crying. After the funeral, V, R and V’s husband and I went out for lunch. We talked about our lives and where we were. R told me he was very concerned because I did not look like me.

I got queezy while sitting in the resteraunt and V joked that I was pregnant. I denied it, then as I was driving home thought … hmmmmmmm . I stopped and bought a pregnancy test. It was positive! I was terribly heart broken. I held S like I’d never been allowed to touch him. It seemed to me like I’d had this child to myself for far too short a time.

My fears of health and another childs health took the back seat. I adjusted to the pregnancy, emotionally, but not physically. I continued to degenerate almost weekly. I could see the concern in my doctors eyes every time I went to see him. Even when I wasn’t the patient. I found out recently, that that period of time was the scariest he’d had as a doctor. He felt I was dying in front of him and there was nothing that he could do. Anything he could think of that could be wrong, had been ruled out. He was at an utter loss.



He referred me to the medical school to handle the high risk pregnancy. Not knowing what was wrong left him unwilling to handle the pregnancy. But he did agree to come see the baby in the hospital and not wait for the 6 weeks that he normally does. (the medical school normally handled the pregnancy and the post natal period before the family went to the pediatrician or family doc). He could arrange it because he was on staff.

I went to the clinic and they tested me for thyroid disorder. When my thyroid tests came back normal, they diagnosed me as having Chronic Fatigue Syndrome. My primary care doctor said he didn’t think so, but he had no other suggestions either.

Samuel continued to get sick, frequently. ER’s were a normal part of our life .. Easter, Memorial Day and 4th of July. This child had a penchant for getting sick on a holiday! (He would be 5 years old before we did not spend a holiday in the hospital .. )

I went through the first trimester, unable to eat anything more substantial than scrambled eggs. The second trimester was better but when the third came, my fatigue multiplied. I began needing daily assistance to get dressed. I was no longer able to drive, my blood pressure was constantly low. Very low. 90/55 was a normal reading for me. That left no place for it to drop without me fainting.

The Thursday appointment before B was born they did an ultrasound. His size was a concern and they felt if they waited to deliver, he’d be so big they’d be required to do a C Section. So they said to come back Monday to check his size. The receptionist said “Now when you come on Monday, make sure you tell them you’re not one of the high risk patients.” Rather alarmed, my only reason for BEING there was because of High Risk! I called my primary care doctor who was livid. He’d specifically made the referral based on my unknown health problems

Monday came and I started to get into the shower. My legs started to collapse under me. I fell to the side and hit my ribs on the toilet. My knees hit the seat. Thankfully, my pregnant belly did not jam into any part of the toilet.

I sat for an hour before I was able to get up to go call anyone. I called the clinic telling them what happened. I called the clinic and told them what happened. They said “so you want to cancel. You should have given us more notice, but come in tomorrow at 10. “

When I got there at 10, I checked in. I was having trouble breathing. I’d cracked a rib while falling into the toilet. B’s estimated weight was well over 9 pounds so they scheduled me for an induction the next day.