a fb post i did late last night

I'm reading a little bit tonight and read where several of my ph friends might have cancer, or already were diagnosed with it. and then I say a tiny baby boy lost his battle with PH, and all I want to do is cry now!!! it's nearly 2 a.m. and all these thoughts are going on in my head. thinking of our precious Joy. i loved her so much!! still in do in fact. and these babies suffering with this blasted disease SUFFERING! and their mommies and daddies suffering with them because they don't know what to do to help them. and then they are ripped away from them when they succumb to Pulmonary Hypertension. WE NEED A CURE!!! DAMN IT! We NEED A CURE!!! i don't know what i would do if I was the momma to one of these babies... i would go out of my mind. I think of Lillyana and her momma Kori. Lilly has had PH since she was one, she was dx at a year. she's thriving at 8, or is it 9? but how must Kori have felt? when she is first told, you may not see your daughter grow. I can't begin to imagine the pain these families are experiencing. Yes, I have lost loved ones to disease, my dear sweet beautiful sister, and that was one of the worst pains i have ever felt, and still feel. but the pain of losing a CHILD? I can't bare to even think of it. I think of my kids and how healthy they are, thanks be to GOD almighty! and my gorgeous Ellie, always smiling, laughing... I can't even bare to think of it. God please bring an end to ALL Suffering! To ALL Diseases!!! and famine, and war .. please don't let these momma's and daddys have to suffer and bury their children. I HATE THIS SO MUCH!

I haven't cried like this in so very very long. and I hate it.

this is getting way tooooooo "real" again. you know? I KNOW what PH is. I KNOW is it incurable. I KNOW it is progressive. i KNOW all these things, and yet, I push it all to the back of my mind and i play with my Ellie and I help my kids as much as I can, and I work so hard to raise awareness but all these things that i KNOW, are pushed way way way back there. this kind of happens to me now and then. it all gets too REAL again, and I back wayyyyyy wayyyy up... I don't want to do that but I think for my own mental health and well being, I will need to... just hope that by November, I will be back kicking and screaming as always.    I may not have met the majority of the people here on fb, i may never, but you guys are in my heart forever

I HATE IT!!!!!!

you don't know how bad I hate taking pills. Yes, I know they are life saving. Yes I know how sick I will get without them... but seriously!!! I HATE IT!!!

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.

Pain Pain and more Pain!

For some reason, I have been having more pain than usual. Back, arms, chest muscles, knees. Every night and every morning, I turn on the heating pad and lay in bed with the heat. it helps in the night time to fall asleep with the heat, but in the morning, not at all. in fact, it takes several hours for the back pain to go away.

but its still alright. i just deal with it and go on my way.

Don't Stop Believing

I don't know when it was that i stopped believing, but I do know it has been a while.  People say the most common things and it totally gets to me, because I don't believe.

What don't I believe in?

Luck. 

Jinxing something and 

Superstitions 

that sort of thing. Some would say that I'm the unluckiest person, having several chronic illnesses, having a failed marriage, etc. But I don't believe so. I dont believe that LUCK has anything to do with it.

God knows me, knows how many hair strands I have on my head. He knows what my past is and what my future will be. It is all pre written and pre ordained. So what does luck have to do with any of it? Absolutely nothing!

As for superstitions, (or stupidstitions as I like to call it), I think those were all made up to make péople afraid of the unknown. A black cat running in front of you is just a black cat running in front of you. Walking under a ladder won't do anything unless the ladder falls on you, or you bump the person off the ladder. Breaking a mirror is just unfortunate, nothing else.

So why in this day and age do people still believe in hocus pocus and nonsense like that? I wish I knew. Maybe they are holding on to the traditions of generations past? Maybe they were taught these and have never questioned it.

Please know that this is ALL my opinion and not meant to say that anyone that believes in these things is stupid or anything like that. I am not that way. I would never say anything to purposely hurt anyone. I know that there are those who might read this and think I am strange for writing this, or whatever, or that my beliefs are all wrong.. who knows.

Spreading Joy and Love

Do you try to spread joy and love wherever you go?  It seems like, in this day and age, people aren't doing that so much anymore.  I have tried to live my life by the Beatitudes.

You know, being the peacemaker, the merciful, the pure of heart. It is NOT an easy thing to do. I try to do random acts of kindness on a regular basis. 

Its not easy. We are taught to keep your head down, to mind your own business, to keep quiet. But to do the right thing, you cant. Just do the right thing. Keep smiling and keep moving. 

Strength and Courage

What makes a person strong? What gives them strength? Why do they carry on when everything seems to bleak and dark? 

Is it that the strength and courage was in them all along, or did it just come up in times of adversity? 

Faith, family, love, these have always been within us. I think our courage in times when we have nothing to hold onto, comes from deep within. Perhaps, if you believe, courage comes from the soul. 

We pray for strength and courage, and of course, God hears our prayers, but I think it was within us all along, and perhaps, we believe that God has granted our prayers when we are stronger than we ever thought we could be. 

“I know God won't give me anything I can't handle. I just wish he didn't trust me so much.” 
― Mother Teresa

I know I feel like this!