If ONLY My PILLOW Could TALK
My story began when I was 3, so my mother told me. (I remember from the age of 4-5.) At any rate, it's been 60 plus years that I have endured this inconvenience.
Self conscious from school days to adulthood
As a young child in school, I remember how shy I was. I didn't want kids to look or stare at me and that carried on well into my 40's. I was very self conscious. (That happens when you get called names no one SHOULD call you.) Some of those names were: "Alligator Skin", "Snake Skin", "Donut Mouth", "Prune", "Wrinkles" and the like. Every one of them hurt me, but I never let others know they did. That hurt was saved for my PILLOW.
When I was alone in my room at night, the tears would flow into my pillow.....so did the blood from my scratches. Every morning I'd wake up there would be a new spot or two of blood. I can't even begin to guess how many blouses or sheets I stained in my lifetime. I was never picked 1st for any game that was played at school. No one wanted to hold my hand. Everyone thought I was contagious. I tried to tell them, but they didn't believe me.
Asthma, bronchitis and pneumonia too
I also suffered with asthma, bronchitis and pneumonia from 4-18 yrs of age. My parents even moved us to Florida for 3 years because at the age of 6, my doctor told my mother I would not survive another Texas Winter. It didn't change a thing so we moved back to Texas in January of '63. I continued to have bronchitis at least 5-6 times a year, missing a LOT OF school. I also had Impetigo when I was a Sophomore in H.S. and missed an entire 6 weeks of the year. (That's a story within itself.)
My mom finally decided to take me to an allergist and I started taking allergy shots. That lasted only 1 year because they made the Atopic Dermatitis worse, if that was even possible. (I was always covered head to toe with the chronic condition.)
Not letting eczema stop me
I did NOT let this disease keep me from enjoying life though. I had my special friends and we had LOADS of fun. I loved art, music, swimming, reading, riding bikes, choir, church, babysitting & so many other things, and I did them ALL. I even went to work at a local Five & Ten store when I was 16.
Did I date? I did. Had a lot of guys interested in dating me, but only one captured my heart. We dated 3 years, but the War got in the way. (Another story for another time.) After H.S. graduation, I got a job with the phone company before starting college. 7 months later, I got married. In comes the regular Dermatologist Visits, which are still ONGOING to this day, but not like they once were. Now, I go once a year, as opposed to once a week. Unless of course an emergency comes up.
Trying every treatment available
I have been on every treatment available over the years, but only 2 worked....Imuran and Ataraxoid. When I was 20, I was given Ataraxoid, which was Atarax & Prednisone together in one oral tablet. It worked wonders!. I took that for 3 years until I became pregnant. I was also given massive amounts of topical 5% Lidex Ointment. The A.D. was BEYOND terrible my entire pregnancy, which was probably due to steroid withdrawal.
By the time I had our son, they stopped making the Ataraxoid. During my pregnancy, the topical steroid caused horrible striae on my legs and belly. The doctor NEVER told me to STOP using it during pregnancy. 😢 He even had the nerve to ASK me WHO gave me the topical steroid to use. 🤦
Going back to school for nursing
When my son's were 6 & 3, I decided to go to Nursing School. (My original degree was in Elementary Ed.) My doctor never said a word to me about what I might encounter becoming a nurse with my current health issue. He only made the statement once to his nurse, "She's in Nursing School! Can you believe that?!" I got my Nursing Degree and went to work in ICU and NICCU before HAVING to go into Psych Nursing. (I never wanted to work Psych.) While working ICU, a new strain of bacteria appeared, MRSA. I became very concerned over this new BUG. However, I knew I was a very cautious nurse, that took every precaution to follow Policy and Procedures, especially with Infection Control. The one & only health concern while at that job was from BACK issues most nurses get with continued lifting of heavy patients. I was 5 ft nothing and weighed 100 lbs.
A friend of mine told me about an opening in NICCU at a different hospital and I took the job for 2 reasons: 1) I always loved babies & 2) They weighed a lot less. 😉 Who would have thought that a newborn could be born having MRSA? NO ONE...., certainly not me, but I found out. Because of one small patch of Dermatitis on my arm, that's all it took for me to contract the bug. I was in for the fight of my life over the next 12 years.
An infection that almost took my life
I became septic and almost lost my life because it wasn't treated soon enough. For 6 weeks, I was given antibiotics and creams, but never swabbed for cultures. Just like the doctor in H.S. who I saw when the Impetigo began, he thought it was JUST my NORMAL Atopic Dermatitis Flare up. 😢
I was finally put in the hospital after I became septic. The worse part was, during this time, we buried my grandmother. The day after my grandmothers funeral, my mother died. I was admitted to the hospital 3 days later and missed my mother's funeral. I was told by the doctor that I probably would not survive, as I was very sick from sepsis. But I DID.
Over the next 12 years, I was in and out of hospitals on IV Vanc. & many oral antibiotics. Finally in 1999, I had enough. I refused to receive only 10-12 days of IV treatment, which is what they gave me with every hospitalization. (Once in '88, I even had an Infectious Disease doctor stop another doctor from doing a cut down on so I could receive the antibiotic. Then he had the gall to ask me if I ever thought about seeing a Psychiatrist!) 😡😠 My aunt was so mad she made him leave my room immediately and threatened to sue the hospital if I died. (She was a Lab Tech & had seen all my lab reports over the past 2 years.)
Finally taking charge of my treatment
So in '99, I knew that I had to ZAP that bug once and for all! I told my doctor that I needed a full 6 weeks of IV Vanc or I was going to end up DEAD & I was not ready to die yet. He agreed to the 6 weeks treatment. But guess what had happened? I had become allergic to the Vanc.🙄 So, along with the Vanc, I got Benadryl and Decadron IV push. I gained 70 lbs during that 6 weeks & it was a nightmare, but at the same time, a blessing! As of April 1999, I have been MRSA Free! 😊
I still carry Staph Aureus in my nasal passages, but so far, have not needed anything except topical antibiotics & Prednisone now & then. Yes, I am now resistant to ALL antibiotics, but I came to terms with that a long time ago. So when I tell you that EVERY day is a Blessing, I truly mean it.
Living with all of my allergies
I had to quit working in '99 & go on disability, & I don't mind saying it was one of the hardest things I ever had to do. Besides losing my career, my house and my income. Because of being allergic to so many environmental things, including perfumes, dust, hand sanitizer, powdered gloves, animal hair & cigarette smoke on other peoples clothes, and a thousand other things, I could no longer hold a job unless I didn't want to live any longer. That was not an option for me. I love life and wanted to live as long as the good Lord allows.
Today, I live a lil more isolated than I like, but it keeps me pretty well controlled so I have gotten accustomed to this lifestyle.
My family lives in Florida now and I am VERY allergic to that State. 🙄😭 When I visit them, I HAVE to be on Prednisone to endure the A.D. flare. It's not easy going back to the intense breakout and itching, but I do it because I love my family. When I can't tolerate the intense constant itching that happens on occasion, my PILLOW is my best friend. I scream loudly into it, leave a few tears and then I'm FINE until the next intense flare. 😊 So you see......,
IF ONLY MY PILLOW COULD TALK.
What is your life story with eczema?
Have you been diagnosed with atopic dermatitis?