Saturday, May 3, 2014

New Normal

When I was diagnosed with idiopathic Pulmonary Hypertension back in 1998, my entire life changed, not just the things I did or didn't do. Not just what I could and couldn't do. but how I thought, how I felt about things changed. My love for people became stronger, my faith in God became stronger, my passion for life, well, that nearly went away, but of course I can blame that on the depression I was going through. I stopped scheduling things too far into the future, who knew if I would be alive... sometimes, too far into the future meant just a couple of days.. or weeks.  I was told I had less than 2 years to live, when they told me I had PH.
As the months went on, I started learning how to live again, live with pulmonary hypertension. I wanted it not to rule my life. I wanted it not to take over my life. but with a chronic progressive disease, it's always in your face. Walking down the block, walking up a few stairs, not a flight of stairs, but a few steps, these things would make me short of breath and I would get palpitations. Waking up in the morning and everything would flood into my memory, my heart.

The problem with having a progressive disease is you won't ever have a stable normal... and of course, being diagnosed with countless other diseases and conditions, changes how things work, or don't, around here. Each day, it seems, I have to have change what my idea of "Normal" is.  I can't work anymore because of fibromyalgia. I haven't worked for two years because the pain has been so hard. I have to constantly be on alert with the PanHypopituitarism, in case I go into adrenal insufficiency. Migraines have started showing up now and then. I have never had them before a few weeks ago.

So what people think is normal, everyday stuff, to me, might be like running a marathon, climbing the highest mountain.  Walking up a flight of stairs, like I said, running after my granddaughter, a toddler, standing to wash dishes, all these things cause not only shortness of breath, but also pain.

I'm trying not to let my health interfere with my life, but lately, I have had no choice but to cancel out on friends and family. I have had to say no to things, I would have jumped at before. My only fear now is, will I be able to go to my daughter's graduation in Texas? I don't know how I could miss it and live with myself. only if i'm on my death bed or in patient in a hospital, will I miss this! plane tickets have already been purchased!  I'm so excited!!

And of course conference is coming in June. Pulmonary Hypertension Association's 2014 11th International Conference and Scientific Seasons I have been to so many conferences, it's like I'm going to a family reunion! So many friends and their families are there! Doctors I saw in Texas, where I was diagnosed, in California, from all over the world, will be there! I'm so excited to see them! I'm more excited to meet the new friends I have made on facebook. I'm also SUPER excited to see friends I have known for 10, 15 years, since being diagnosed!

Last conference, in Orlando Florida, I over did it one day, and my sister had to wheel me into our hotel room so I could rest. I don't want to happen this time!! But I'm super excited to see everyone and do everything, I imagine, I'm going to get worn out pretty fast.

Anyways, I just wanted to talk about my life with Pulmonary Hypertension, and these are the two big things coming up. It's Saturday night right now, 10 p.m. and I'm thinking of going to bed. and the only reason why I know this is Saturday is because my roommate didn't go to work today and my granddaughter is at her father's place.