Monday, January 1, 2018

twenty seventeen

2017, was at best, wonderful and fun, and at worse, horrible horrible horrible. Funny how life can change from day to day, hour to hour.
When I woke up early one morning in January 2017, I was playing with Ellie, having fun with Stevie, about to make breakfast. next moment, I was rushing to the hospital in D.C., to see my grandson, cold, in his mother's arms. What a horrible horrible day. :( :( :( the sadness of those days, weeks, months, became less horrible, less all-encompassing. I could laugh again with Ellie and Stevie and I ate more. Then, one day in April, I met someone. and we talked and talked, over the days and weeks and finally went out. it was nice.
I won't ever ever ever forget Benjamin. no way I could. But I am forgetting how he felt in my arms, the sound of his cries, how he smelled. and I hate that. I hate PH and all other chronic illnesses I have, for taking away those, and other, memories.

I am not an optimist person. I don't look at 2018 and think, good things are on the horizon. I just think, With God's help, things can be better!!! but at the same time, in the back of my head, I doubt..... I think that would be depression, low self-esteem and the demons that are constantly at war with me.

Thursday, December 15, 2016


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!!! 

Friday, November 25, 2016

Pulmonary Hypertension Awareness Month

Here we are again! Another November. Another awareness month. Why you may ask are we celebrating Pulmonary Hypertension as a month? well, for me, we aren't celebrating the disease. We are celebrating the PHighters that continue to PHight against Pulmonary Hypertension. We are honoring those that have lost their battles with PH. We are celebrating the doctors, nurses, researchers, family and friends who are PHighting along side us, reaching for the cure.

So, with that in mind, I make awareness graphics each year, hundreds of them. :-) I make profile and cover pictures for those who PHight along side me, and for the families of those who's loved ones have passed. It is such an honor for me to make these for my PHriends!! 

Usually, as I'm working on the graphics, I say a prayer for the person I'm making them for. I pour my heart into what I do, and I do it all for love!!!

Please feel free to check out my Pinterest page to see some of the graphics I've made. Share with your family and friends by pinning, sharing on FB, Twitter, google+ etc.

Next year, I believe I will be requesting donations for each graphic I make, for PHA!! :) Let's see how that goes :) :) :)

I also make graphics for people to share on their pages and with friends and family. These are to help people understand what we go through, what Pulmonary Hypertension is, and how we struggle each day to live.

Please donate to the Pulmonary Hypertension Association either by going directly to their webpage PHAssociation or by going to Amazon Smile and choosing the Pulmonary Hypertension Association! you can also donate to  PHAware by going to PHAware's donating page.

From the bottom of my heart, to all those who have donated to PHA, PHAware, or any other Pulmonary Hypertension charity, thank you from the bottom of my heart!!!! You are very very much appreciated!!!

Happy Awareness Month! Keep raising awareness! Keep PHighting! Never ever give up HOPE!

Saturday, October 1, 2016

The new me???

I have been trying for years to change the way I think, the way I feel when people belittle me and hurt me. I've read articles and books on how to better yourself, lol I even made a stupid Pinterest board.
I want to be assertive
I want to be strong in my convictions.
I was to be able to say no and mean it and then not go back and say yes because I felt badly for saying no.
I want to have my own place.  With my own things. Decorated the way I want want to be.
I want to be financially stable enough that I don't need to ask for $$ for meds and food. Even if I have food stamps.
I want so badly to be able to work. Of course disabilities make that super hard.
I want to be able to tell certain people, that's it. You are too toxic for me. Get out of my FRIKIN life for good!!!
I want to not hurt every single day. I mean yeah ok so I have what I have. Can I get a day or two break in between bad flare ups?
I want to be able to speak my mind without later apologizing for being harsh or ugly or whatever.

Ok so not all of these things are going to happen. But even if one of them happened, things would get better right? There I go again. Playing the if only game. I've done it all my life.

If only I graduated high school id be happy.
If only I got married ...
If only I had children...
If only I could get away...

Right now in this point in time I don't care if I change.  I don't care if things get better for me.

Tuesday, September 6, 2016

I just don't understand

I don't understand. I mean I have been blessed by so many miracles in my life. So why can't I believe that God will send another one my way? I whole heartedly believe everyone else can get miracles or blessings or whatever you want to call it. Then why can't I believe I can?

Why do I believe my sins are so offensive to God that I cannot be forgiven? I know we are all forgiven of our sins and then after death we have purgatory to help with the rest. So why can't I believe?
Why do I believe God isn't listening to me when I pray when I know with all my heart God listens to everyone else - but me.

I just do not understand. I have felt this way for many years now.

This post does not need a reply but if you have the foggiest of ideas why, i would love to hear/read  your thoughts!

Wednesday, June 1, 2016

should i or shouldn't I?

I'm really really considering putting this blog up for monetization. i wouldn't have any idea how much i'd get and if it's per person, click or whatever. i'd probably get ads that would pay me whenever someone clicks on their link from my blog.

so I'd like to ask... would you click on a link, whether you purchase or not? would you read my blog at least once a month, I'm guessing, because I just had a notification that my blog 90 views in the past month. I am sure, really, that's as they say , "chump change" but chump change for me would be a nice little amount. lol since i dont even have chump change left over at the end of the month.....

so I'd love to have people comment on this and let me know, would you visit my page at least once a month? if I posted more regularly, would you come and read those too? and if there were advertisements on my page, would you click on them, if they were interesting to you ? I'm just wondering

HUGS n Periwinkle Kisses