Thursday, December 15, 2016

Sick?

What do you think of when you hear someone is sick?

  •  Cold
  •  Flu
  • Virus
  • Tummy ache

Yeah these things but do you think of the things that people don't "get over"? things they can't take a pill for to no longer have their sicknesses?
 Chronic Conditions such as 
  • Depression
  • Pulmonary Hypertension
  • Cystic Fibrosis
  • Cancer
  • Poly Cystic Ovarian Syndrome
  • Fibromyalgia (chronic pain)

Most people don't. Yeah for some of these, medications can help. But then you can get a flare up and no amount of medications can touch the pain, or shortness of breathe, or palpitations or any other symptom you might be having.


And within those chronic conditions are the invisible diseases, those that can only be seen by echo, ultrasound, or x-ray. 

You can add all those conditions up there to the list of invisible diseases! 

So if you see someone getting out of their car in a handicapped space and they don't LOOK disabled, believe me, they probably are!!! You can ask if you want, but dont yell scream or berate them. it makes having an invisible chronic "sickness" all that harder!!!

Monday, December 12, 2016

"You never know how long we have left, with PH"

Someone told me the other day, :
"You never know how long we have when you have a chronic illness like  Pulmonary Hypertension!"

I thought and thought to myself. How would I respond to that? Would I agree like I have always done - since this has been my thoughts too?  I used to question week to week, will that would be the the last week I'd be alive? Or, in the back of my head,  whenever anyone would say something like,  see you later, or a doc would say, see you in 6 months, in a very small voice I would think 
"Yeah if I  still around!"  

So,  as I was typing my response to this person, I realized that I no longer say these things to myself!!  This is a major break through for me!! 
I have stopped the negative self talk, that I thought I was doing in my head but it became so common for me to be alone during the days, I started saying things like "you are so stupid!" Or "brilliant Alex! Just F* brilliant! "  I was once at a meet up where we were using different tools to draw with.  I said allowed to myself, but loud enough for the woman next to me to hear, "figure it out Alex, or are you too stupid?"  After another time of telling myself I couldn't do, this woman says to me, "can we please stop the self hatred?" I was so embarrassed I wanted to crawl under the table.  I think that was the last time I have said anything to myself since then.  

I have heard people say,"by the time you are ...insert ramd age here... you should be comfortable in your own skin. I think I may know now what that's like. 
So below was was my response to this person.  I am so glad I am realizing this now!! Am I going to stay 2 steps forward and four steps back once in a while? I'm sure. I'm only human! As long as I can dust myself off and get back to where I am now, or maybe even further than I am now. That'd be great!! 

 know, I've always thought that too. Or if we don't laugh we'll cry. But honestly just reading that I thought to myself , we will never know, with or without PH. I celebrated my 18th year since diagnosis a few months ago and I think it's been a slow process but I don't think about anymore. I have also stopped thinking of "if I'm still alive then..." when someone invites my out or something. You know? 
I have had such a blessed life since being diagnosed, more so since I got divorced.. 
I feel happy now. I've even noticed that we are in December and I still haven't been knocked down by depression , so much so that I end up having readjust meds in an inpatient hospital stay. All of this is just now dawning on me!!! God willing I'll be ok throughout the winter time and will make it the spring without depression or suicidal ideations!!! 

I'm sure having a new granddaughter and a grandson on the way has helped me tremendously!! But wow! Knowing all this now really is making me cherish my life more!!!