Please read me!

[missy98writer]

Since I was a baby I've had Ceribal Palsey that effected the entire right side of my body. My doctor at the time told my mother if I walked I'd never be able to run, skip, or climb stairs. I always limped, but at age 35 I used a cane to walk. For many years I was a medical mystery, both of my legs below my knees, ankles. feet, and even toes were 5 to 8 tines their normal size. But back in 1995 the doctors said I had Primary Lymphadema. Over the next couple of years we wrapped my legs, they went down a little, but the bloating below my knees on both legs, my massive ankles and even my toes were now 3 times their normal size. My legs wouldn't go down. In, fact in 2007 I gained a lot of weight, but it wasn't fat, but bloatingg all over my body. The doctor said I not only had Lymphadema but I had Elephantiasis. My legs were so large I quit walking. I could barely stand with a walker no longer than two minutes.
Later we found out why my legs weren't going down despite my wrapping, I was gaining weight too from co2 or carbon dioxide. Then back on May 25 when I was rolling to my side in bed, I turned gray and could barely breath let alone catch my breath. Sensing my distress and the fact I turned several shades of gray, my mom called 911. I was rushed to the ER at Deaconess Hospital in Oklahoma City, Ok. The doctors put me on oxygen, but my oxygen levels remained below 65%. I passed out that afternoon, my oxygen level dropped even lower so the Pumnologist had to intibate me. The doctors thought I was goint to die, and I almost did. I willed myself to live. Two weeks later I woke to find a trach in my neck and a ventlator attached to the trach in my throat. I was on life support to help me breath at 100%. A few days later the doctors did a Cat-Scan and discovered I had PPH or Primary Pulmonary Hypertension. So, my Lymphadema / Elephantiasis: was Secondary Lymphadema, not Primary Lymphadema. My Secondary Lymphadema was due to PPH or Primary Pulmonary Hypertension. To explain what PPH is see the web address: http://www.pulmonary-arterial-hypertension.org.
I lost over 85 lbs the two weeks intibated. The co2 bloated my body and I weighed 300 lbs. A few days later I went to another hospital: Select Specality Hospital. I spent 99 days there recoyperating and trying to get off a vent for breathing. I would have got out sooner after 38 days but my Pumnologist did a procedure and collapsed my right lung, the idiot! When the doctor had a nurse shove a tube down my right shoulder to reinflate my lung. It hurt like a bitch! The pain of reinflating a collapsed lung is beyond horrible! Also that day the doctors found out the port on my left arm was infected, I had a bad bladder/kidney infection, and that I had a case of Pnemonia in my left lung. Every 4 hours I asked for and got 6-8 mgs of Morphine for my pain.
On the 75 day of my stay at Select Specality Hospital, I wouldn't recommend the hospital to an amobea they sucked! More people left there in a coffin, but I left on a gurney. The entire time all 99 days I didn't receive any physical therapy. Only five times did the nurses and staff get me out of bed and into a chair. I left the place unable to sit, stand or even walk. I was a total invalid. I also was on oxygen, I'm now not on oxygen, but I use a bypap machine to help my PpH while I sleep. I recoperated at home for twelve weeks. Home health and Medicade sent nurses and physical thearipst to my home. I learned to sit and use a sliding or transfer board to get from my electric adjustible hi-low hospital bed to my manual wheel chair. Then I went to Valir Rehab Hospital in OKC, OK for 8 days and learned to sit for long periods and use a sliding or transfer board to get into my manual wheel chair. I went to Valir Rehab Hospital back in 2006 for ten days, and back then learned to stand and use a sliding board or transfer board. Since Valir Rehab this time used up all of my physical thearipy money, an alloted amount Medicare gives you, I no longer have a physical thearipist comming to my home. I have to wait until next year for physical thearpy. Via Oklahoma Medicaid or Sooner Care I have the Advantage Program because I have Cerabal Palsey, Lymphadema/ Elephantiasis, PPH or Primary Pulmonary Hypertension, and I have an underactive Thyroid. The agency my social worker, Roxy, via the Advantage Program uses is Ghirling Home Healthcare in OKC, OK. They alloted me 14 hours a week a Home Health Care Aid to come to my home and take care of my needs. The worker helps me take a bed bath, wash my hair, comb my hair, dress me, brush my teeth, help me on the bed pain when I poop, put on my diapers. I use adult diapers because I have an overactive bladder. I pee 25 to 40 times a day. The aid helps me get into my manual wheel chair with a transfer or sliding board. Over the years my aids at Ghirling sucked. The last one I had called in sick all the time. I she showed up she slept or got on the phone. She only gave me a bath and changed my bed. She worked 3 to 4 of her 14 hours and lied to get paid my full 14 hours per week. I finally had enough and turned her in. I found out the allowed a relative to get hired at Ghirling to work for you as an aid. My wonderful sister-in-law, Crystal, needed a job and agreed to work at Ghirling as my aid. She's a Godsend. She does her job and then sum! She helps me get up and in my wheel chair Mon, Wed, and Friday from 8:45 am til 2:00 pm sometimes a little later.
Heed my story, get many medical opinions and make sure you get a Cat Scan, if your health care insurance or Medicade won't pay for a Cat Scan, then borrow money to get the expensive and life saving test or scan. For over 14 years I was misdiagnossed. I had PPH or Primary Pulmonary Hypertension all along. My untreated PPH or Primary Pulmonary Hypertension caused my Lumphadema / Elephantiasis, underactive Thyroid, and other digestive issues . On top of al my medical problems I suffer with horrible stomach pain every day! I live on the pain killer Ultrum or Tramadol to help my pain. I'm allergic to many foods and food aditives. I'm Lactose Intollorant, highly allergic to MSG, and meat with Hormones, Steroids and chemicals. I eat Certified Organic Grass Fed or Grain Fed meats. I'm allergic to many processsed foods. I eat homemade food that for the most part is Certified Organic. The less processed the food is the better. My stomach pain is bad, but if I eat good food and stay away from processed and fast food then my pain is somewhat tollerable. I also eat a salad with my lunch and dinner for fiber and to keep my bowel movements regular. Sometimes from all my problems I have intense bouts of diaherra. After I wrap my legs, the next day I have diaherra.
I feel the power of prayer saved my life when I almost died. I'm an Agnotstic; a person that doesn't believe in organized religion. I do believe in God, Jesus, The Holy Ghost and the saints. The Bible is great, but too many Bible Thumpers take the Bible too literally. And for those folks thinking I'm going to Hell in a handbasked: Honey, I've have my handbasked packed for a very long time!
I also believe in myself. A healthy outlook on life keeps away any depression.
I believe in the USA, freedom of speech , the Constitution, ect! I feel if you don't believe in the USA: Then get the hell out.

Signed,
Missy living with PPH or Primary Pulmonary Hypertension, Lymphadema / Elephantiasis, Underactive Thyroid, Cerbal Palsey, and many food allergies. And what's so sad as of Feb. 27, 2009 at the age of 42 I have too many health issues and diseases. It could be worse.

[adamstarr]

I'm sorry to hear that you have had these problems. You seem like a very strong person and I am impressed with your positive attitude. Hang in there!

[RaftingRita]

I agree with Adamstarr -- what fabulous courage to cope with so many problems.

Missy, I send you good wishes and prayers that you may soon have much better health.

Rita

[Elissa24]

your courage is very inspirational . . . thank you for sharing.