Life Prior to My Diagnosis

Childhood 

I was always pretty sick. I remember vividly certain experiences from my childhood (which is pretty rare, as most off my memories have escaped me). Ear infections, tonsillitis, “viruses” (ugh…hate that excuse); general illnesses that kept me in bed, hospitalizations, not healing well after surgeries. In fact, I remember probably one of my first surgeries, a simple, routine tonsilectomy and adnoyse removal and ear tubes.

Eventually, (and hoping, I complete and continue this blog) I will have had so many body parts and organs removed, it is scary.

Why? Well, I really don’t know WHY the medical field failed me, over and over again. I write this blog, and have many hopes on raising awareness, with many avenues in an effort  to avoid the life-long suffering that my family, and I have endured.

Let’s try to start at the beginning.

All of my life, I have never really healed well from surgeries, in particular the events above, are my first memories, of after surgery nightmares. I was maybe 5, laying in my small bed, in a bedroom shared with my two sisters. We were far from being well-off, as my family was rather poor, although my father worked very hard to keep our basic necessities met. Anyway, at some point after the surgery, I awoke to my pillow drenched in blood. I did not want to go back to the hospital, and somehow I knew something was not right. Well, to solve this problem, before my mom would notice, I turned the pillow over, the nice clean side of the pillow was the only part visible to my parents. I don’t really know how my mom, dad, or grandmother figured it out, but they did.  I was eventually taken back to the hospital, it had to be around Christmas. One nurse, had these beautiful mistletoe Barrettes in her hair, she told me that if I cooperated, she would give them to me. This stands out vividly in my memory bank. I fought, and I fought, as the medical staff wanted, and eventually did, re-suture the gaping- bleeding holes where my tonsils once were, and they did this while I was awake. I fought, I was eventually, ducted tape down to the exam table and they put something in my mouth to hold my mouth open. I didn’t get the mistletoe toe barrettes. Traumatized?  Yes, this is just the beginning of the many personal stories, that I have involving my care from most of the medical field.

Going to the hospital, or doctor was not something my mother believed in. You see, and this will be hard for many to understand, but my mother believed in the power of prayer healing the sick. By the time I was finally taken to get medical help, it was pretty severe, and more than likely, at the urging of my beloved grandmother. As now known, many people with CVID, and other PIs, don’t mount a fever in the face of infection, by the time I mounted a fever I was drastically ill. Prayer, was not working, my mothers prayer warriors, would gather at our house, and “Lay their hands on me”, and rebuke the devil within me.  As a child, I did not know any better, I just did not feel good, and was sick.

I vividly remember one Halloween, I was so Incredibly sick, I could not get off the couch. .  Halloween was a special time of the year for Myself and my two sisters, probably most in our community. It meant candy, dressing up, block party cartoons and more candy. Yes, we used pillowcases to collect our candy, we did not get the Halloween buckets, and we didn’t get costumes.  I had decided to use a yellow frilly curtain and wrap it around myself, and be a princess. I was pretty disappointed when the big day came, and there I lay on the couch, which faced the front door,  unable to move, breathe, drenched with fever. How I wanted to participate in the fun, how sad I was that I could not, I could see, through the fever fog all of the children knocking on our door, trick or treating. There I lie, to sick to say Happy Halloween.

Another, basic memory that I just had, and it’s funny that i remember the position of how my bed changed in that big dining room turned into a bedroom for three girls. I guess, I was sick often and remember the viewpoint from the bed. I remember being very ill, I’m not sure what I had that time. Although, I remember I was frightened. I saw my mother walking around the room. I could see her mouth moving, but I could not hear anything. I was so very afraid, I could not hear my self as I tried to speak. It was as if the whole world went silent.

The illnesses were frequent in childhood. I began dispising the season of fall, as it always seemed to be the worse for me. It was a given, I would become sick, and I wouldn’t feel better until the spring. It was my life. Cursed with demons? Normal part of life? I did not know about “germs”, the immune system, all I knew was I was the sickly one compared to my sisters.  I did not know my life of illness was abnormal, because it’s all I had ever known.

Medicine? What was that? In those days we were lucky if we had childrens chewable Bayer aspirin. We always had mercurochrome, for some unknown reason. Never, was there any medicine.

Pic 1:  My sister and I, I am on the right

 Pic. 2 Early days, dad with us three, I am far right.


Pic 3: sisters and I. I am standing up.

What do you think?