Dianne St Clair
This is my Life
I was born on July 25, 1965. I had a big brother who was a year & 23 days older than me. We lived near Grandparents, Aunts, Uncles,..
My Daddy had finished his term in the Navy when my Mama became pregnant with my brother. She had Polio as a child & lived in a institution because so little was known about Polio at that time. She was told she could never have kids due to medicines, being put in the Iron Lung, & the damage it did to her body. But she had 2 & became a Nurse who worked in ICU for 36 years.
As a child I would never wear socks or shoes. My feet were always hot. I got in plenty of trouble for that. I was always tired. My Mama said she never knew anyone who woke up tired like me. My back would always itch- especially in a hot bath. I would claw my back up. Which was another thing I got fussed at. My brother called me “Puppy Dog Feet” because my feet were always hot. I always had swelling in my Lymph Nodes & shoulders.
At the age of 12 I had a Lymph Node removed for a biopsy. Which was not cancerous. My gums would always swell also. I would have bouts of anxiety that was awful. At the age of 14 I was involved in a head on collision. I started seeing a Rheumatologist.
The Rhumey diagnosed me with Adolescent Rheumatoid Arthritis. I was on anti- inflammatory meds & did physical therapy.
At the age of 15 I became pregnant & married. The “hot feet” would get so bad that I began putting them in ice water. My swelling & pain in joints got better.
At the age if 22 I was pregnant with our second child & raising my niece. My anxiety was over the roof. My second daughter was born at 6.5 months. She weighed 2.5 lbs. she had many problems. She stayed in NICU for 4 months. When she came home she weighed 5.5 lbs, on oxygen & lots of meds. Our marriage fell apart.
At 24 I was single with 2 kids & no education. My ex husband had kept our house, the kids, cars, my clothes,.. His girlfriend moved right in and would even wear my clothes. I began going to bars & partying. Finally I took my GED & enrolled in college.
At 25 I stayed in the dorms at college. I would go out & drink but I would always get so sick. I would go to the infirmary, on campus, they would give me IV’s for dehydration. I was exhausted & hurt all the time. They said I was an Alcoholic.
When I was 28 I came to Louisiana to visit an ex boyfriend. He would go to AA with me. We got married & I got custody of my 2 girls.
I began going to Dr’s telling them that something just isn’t right. I was exhausted all the time, my body ached, my feet stayed hot & red. Sometimes they would turn purple. I got several different diagnoses but non of them I felt was correct. Two different Dr’s would give me fluid IV’s because I would be dehydrated. At the age of 29 I had a hysterectomy due to precancerous fibroid tumors in my uterus.
Finally, the age of the internet came along. I was searching my symptoms & found some that matched what I had. I made an appointment with a Hematologist to have blood work done. Armed with my print outs I went to see her & told her my symptoms I gave her the print out. A few days later I went in for my results. I had Primary Polycythemia Vera. I make too many red blood cells. It is considered a blood cancer. But explained why I was always dehydrated. I was also diagnosed with Erythromelalgia. Which explained the hot feet.
For several yrs I did my treatments of fluid IV’s & a phlebotomy. ( where they drain the thick blood). I always had aches & pains but figured that was part of life.
For a couple of years I would wake up hurting & had a hard time getting the day started. Also I would have bouts where my fingers & toes would swell so big that would look fake. It would feel like hundreds of bees were stinging me. Once the swelling would stop, which could take a day or more, My hands & feet would be so sensitive to hot & cold water. Then one morning, at the age of 45, I woke up in extreme pain in my back. We went to ER. They ran all kinds of test due to my PPV & EM. Finally my Hematologist sent me to a Rhumetologist. Just one look at my hands she told me I had Psoritic Arthritis.
I began the rocky road that lead to nowhere doing Biologics, anti inflammatory meds, pain meds, physical therapy,… At the age of 45 I was awarded disability. I got approved within 8 months.
Finally, at the age of 48, I switched Rheumatologist. My new one sent me to a Neurologist. The Neuro did test & diagnosed me with Pherperial Neuropathy. The Rhumey did MRI’s & blood work. He added to my list of diagnoses He said I had Ankylosing Spondylosis.
As I sit here typing this, I am 49 yrs old. I have Primary Polycythemia Vera, Erythromelalgia, Pherperial Neuropathy, Psoriatic Arthritis, Ankylosis Spondylosis,.. I have had numerous biologics that never worked. My flares leave me bedridden. I may spend a few weeks confined to bed. The pain is so intense & constant. I have laid on the floor asking God- why me? I have begged him to take away the pain or to please take me because this is not living.
On good days, which is when the pain is not as severe, I try to do what I can. I still stay exhausted.
Currently I am prescribed Cymbatla at night(which has helped me the most), Pain Patch, Norco’s 4 times a day, Neurotin, An aspirin at night, Backlofin, Savella in the mornings, 1 mg of Ativan at night. I try to stay positive. I get in my pool everyday and move around.
I pray for “good days”. But I am hesitant to make plans because I don’t know what that day will be like nor do I want to be a “party pooper” & ruin someone else’s good time.
My husband & I raise 2 of our grandchildren. Ages 14 & 15. I often think how unfair this disease is to them. They are my life & give me reasons to get up & try everyday.
I am so thankful that more awareness is being made for PsA & AS. Although many people don’t understand the extreme pain nor the affects it has on everyday life – atleast they have heard about it. I do hate the Phil Nicholson Enbrel commercial. It gives people the impression that if you take that – your life will be great. I had so many severe side affects from that drug & other biologics.
I have a good Pain Management Dr now. But a couple made me feel like I was a drug seeker. I’ve changed Pharmacies because of the looks I would get & the way they made me feel. Because of my PPV I have “track marks” from 12 yrs of IV’s & phlebotomies. At times I have bruises where the veins have collapsed. That really gives them something to talk about. (It has been my decision not to get a port)
More awareness needs to be done but atleast it is a start. Many people are just ignorant & selfish. No matter what info they are given – their minds will always be closed. (That is something I have learned to accept)
What keeps me going? Love – hope & faith in God. I know one day I will soar like an eagle. I will dance on streets of gold. Until then- I take it one day at a time.
With this I will close- it’s a quote – So each day we tread this road that leads to peace or as the big book says tread the road to happy destiny. And some days it seems so hard, just like a sand storm in the hot desert. And some days the sun is so beautiful, with a slight breeze and we gaze upon the colorful and fragrent flowers.
But the real gift is that we have learned that this path, the journey we are on that we are never walking it alone.
Lousianna, United States of America