Saturday, March 23, 2013

I'm a YO YO .... again

Well, here I go once again. Up or down... that would be how I feel. You know when you have a chronic illness you have good days and not so good days. Therefore, I consider myself a yo yo of sorts. I'm up one day and down another. At least the up days, those good days, still out number the not so good days. I refuse to have a bad day. It's just not in my spirit.

I am so glad I finally figured out how to blog once again. Been a while. Since I had my operation I haven't been on as often as I would like. First cause was - I couldn't type (not that I really can right now) and then I spent so much time learning how to walk, how to feed myself and yes how to type once again; and the other things that go along with having a "normal" life. Who me, normal. As we say in the PH (pulmonary hypertension) community, we now live a new normal.

You ask what is pulmonary hypertension: "High blood pressure in the lungs is called pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH). Once considered rapidly fatal, this rare disease is still very serious but treatable. Yet even with nine therapies available, many patients receive proper diagnosis and treatment too late. Symptoms often lead to misdiagnosis of pulmonary hypertension as sleep apnea, COPD, asthma or obesity. Many patients will see 3 or more different physicians over a 3-year period before they are properly diagnosed with PAH. The average time between PH symptom onset and diagnosis is 2.8 years Almost ¾ of patients have advanced PH (Class II or IV) by the time they are diagnosed. The diagnosis time has not changed in over 20 years." partially borrowed from the Pulmonary Hypertension Association

I have this - this life threatening disease, others also have this disease, approximatey 30,000 in the USofA and about 150,000 world-wide. Not a very common disease at all considering, and I call it the Dastardly Disease(see Novemer 2010); I wrote a poem about it. Says it like it is. While I was in the hospital (suppose to be there 5 days and ended up being almost 3 months)one of the nurses copied my poem, enlarged it and taped it to the wall. I made every doctor, nurse, techie, cleaning staff READ IT. It brought tears to some and the docs said it really does say it like it is.

I think you can tell by my writing here why I titled this YO YO!. Not only does my mind go up and down, so do my innards :D The hope was with the open heart surgery I would be cured of the Dastardly Disease - didn't happen but I am on half the medicatin I was on, my heart is getting stronger and stronger. I am able to now exercise every day (week day, I take the weekends off) and I can now walk without looking like a toddler with a "load" in their diaper. Took a while (almost 2 years) but I'm getting there.

Yet, wouldn't you know, something is still going on. I have great doctors and they listen and follow thru. i.e. last week I had a 24 hour Holter Monitor and a chest x-ray. Don't have the results of the Holter yet but the x-ray showed no signs of pneumonia. Not wheezing or anything like that, just something isn't right in the bod. So I'm upsy, downsy, like a yo, yo.

I'll try to write more often, now that I figured how to do this; well, I think I have .... AND