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

Wednesday, March 30, 2016

A different life, a different time, a different me

In my younger years, I always pictured myself in an office of some sort, well after the time I seriously thought I would be a nun in the Catholic church. I never thought about a husband, or children. of course that would come. I had a plan for myself, I'd get married at 26 and have a child at 28.

But life has a funny way of throwing things for a loop. I ended up getting married at 18, and had my first daughter at 22, then my second child a year later, and finally my third daughter

i guess i'm just mourning the life i could have had. I could have
i guess i'm just complaining and acting like a baby

Saturday, March 26, 2016

I cannot tell a lie

But we do, don't we? Lie regularly that is. If someone asks me how I'm doing, first thing out of my mouth, regardless if it's true or not, is "I'm fine thanks!". but if people knew how I was feeling, I'm sure they would never ask. Who wants to be bombarded with all the crap I go through on a daily basis. People with Chronic Illness, unless a cure is found, will always and forever be sick. Yes, of course, we all have good days and bad days.

For me, I know I'm doing better if the good days outnumber the bad. But lately, I've been having a rough time.
A dear friend asked me recently how I was doing, I asked her if she really wanted to know, or was she just being polite. I could tell she was just doing the same small talk we all do from time to time, but I just wanted to know if people really care about how I'm doing. so I've started to ask.

It's a lot to take on, listening to all this. and people don't know what to say when you're done, usually it's "Oh I'm sorry you are going through that". for me, i always shrug my shoulders like it's no big deal and say "heck! I've been sick for nearly 18 years!"

Well, I was diagnosed nearly 18 years ago, but have been having symptoms of Pulmonary Hypertension at least 2 years prior, right after I gave birth. But I'm wondering lately if I wasn't sick while I was pregnant. It's so very dangerous being pregnant with Pulmonary Hypertension. the pregnancy always takes up so much energy and already puts a strain on the heart with a healthy person. I person with chronic illness such as PH, it could be very harmful to both baby and momma.

Anyways, back to telling the truth the whole truth and nothing but the truth. These days, I don't see how that's possible. I have been trying all my adulthood to tell the truth, but things have to be said to protect others, or to not hurt them emotionally. Now that my family is grown, I'm being asked to lie for them. I don't like this at all, not one bit, and I've told people this. But if it gets them out of harm's way, of course I will.

So to tell the truth or to not tell the truth. honestly in my opinion, you should strive to be honest in every way, but to spare someone from any kind of suffering, I'd probably sugar coat it. Question now I guess is, how do you know when you're being lied to?

Saturday, March 12, 2016

extreme boredom. been watching Gilmore Girls all fucking day. on the last season. i hate that my life is watching television all fucking day. dont want to craft, dont want to color, dont want to eat, dont want to drink. want to sleep my life away. dont even want to be aware. dont want these fucked up dreams i've been having.

people chasing me, trying to kill me. running around not knowing what to do or say. then being caught and thrown into a bus, where people are asking me questions that i have no idea the answers to, and if i don't they will kill me.
so i try to escape. then as i'm running away, i get caught again but this time i'm thrown into a submarine. in this submarine people are shoving me and pushing me and kicking me. then the doors start opening up and people with knives and guns come after me. i hate hate hate these dreams lately.

i hate hate hate my life lately. and in the near near super near future things are going to change. i may be moving across the country, or i may stay here but move to a different place. there's so much going on. :( stress is beyond ridiculous. if i end up leaving here, i want to do things before i go, museums, up the washington monument, the basilica, so many things .... but of course, knowing me, i wont do shit. i'll just pack my shit and go.

Friday, March 11, 2016

What if?

What if everything I was ever taught, everything that I hold near and dear, all my truths that I cling onto when I'm at the worst points in my life, were not real?


What if there was no God? 

What if people made God up and all us desperate people needed something to believe in?
What if there is no heaven or hell? And when you die you die? All of our prayers were for nothing?

Some of my favorite saints and my fav Guardian Angel pic

Of course I refuse to believe that God doesn't exist.but why then does it feel like all my prayers have fallen on deaf ears, not that God is deaf, but no one is hearing my pleas and cry?

i am tired

I'm tired. I have been tired for a long long time.

Tired of waking up in pain.
tired of feeling each and every crick and pop
tired of being woken up by pain.
Tired of fighting

what am i fighting for anyways? and who am i fighting?

why are all my dreams lately about someone wanting to kill me?

Wednesday, March 9, 2016

Always fighting demons

I seem to be always fighting demons in one way or another. No I am not talking about the devil or demons or wicked things, but things in my life that I'm dealing with. things like

  • my health, 
  • my children, 
  • my living situation
  • the way I'm living my life (or not) 

My health seems to be pretty stable right now. However, I'm having more symptoms, more pain, more shortness of breath than I have had in a long time. I can't bend over to pick something up without getting dizzy. Fibromyalgia pain is getting worse, however, the medications they use to treat it, aren't good for the Pulmonary Hypertension.  I had an MRI done recently and am awaiting results from that from impatiently. I want to know NOW Damn it! If my endocrinologist can get my Panhypopituitarism under control, perhaps everything else will settle down too. Even my psychiatrist thinks that my Depression and anxiety could be better improved if my endocrine problems would be figured out. 

My Children, well, they are my children and I will always worry about them. I love them so much and all I want is for them to be happy and healthy! I want them to succeed in what they are doing, to whatever point they feel they are succeeding! But there is always some Drama going on with these kids! The other day, I was driving my daughter's car and it started smoking under the hood. Luckily, I pulled over in front of a mechanic. They wanted to charge me $400 something. I tried to apply for their in store credit card to get a discount plus be able to pay them off over a year without interest. of course, I was denied. My Credit is so bad right now. It has been for a long time. but I keep chugging along. 

My Living Situation right now is good. However, at the end of the month, my roommate and bff is moving out. I have applied for public housing for low income, and am on the world's longest waiting list. I have checked craig's list for apartments in my price range, and of course haven't found anything. If I do not find anything, I will be moving back with my mom in Southern California. I have lived with her before, for nearly a year, and although we get along wonderfully, and she is an amazing woman, I gotta say, I was so bored. The city is small, inland, away from the Ocean,  away from all my friends and siblings. I felt isolated. I couldn't even use her car except for groceries and church because it is the only car she has and if it broke down, she wouldn't have another car. blah blah blah. of course I respect that and listened to her, but I was so incredibly bored. Plus, all my medical care was far. the specialists were in San Diego or Loma Linda, a good couple hours drive in traffic. I want to go home for a visit. I'm very homesick. but It looks more and more like I will be going to stay. I just don't see another way for me. 

I wanted to be doing stuff with my life since I'm unable to work. I wanted t o go to Museums, Monuments, that kind of thing. Instead I sit here all day and do nothing. watch tv shows. I'm not even going onto FB as much a before. I'm tired of reading about Pulmonary Hypertension. I'm tired of reading about how deadly and rare it is. I want to be doing something. I want to work and be a productive member of society. I want to have money left over by the 10th of each month, not worrying about how am I going to get what I need with only $5 for the rest of the month? 

All this has been is a post about my complaining. do I even want to post it? I dont know. maybe I'll sit on it for a few days before posting. 

Friday, February 12, 2016

On my Soapbox

I don't normally get on a religious rant... but I've noticed a trend on T.V. and in the movies lately. ok it's been years... but more so now on television.

I started watching the new show I think called "Angel from Hell."  I started watching and it was cute, a few good laughs here and there. I thought nothing of it until another show came out on a different network. "lucifer"
Then one day I was scanning thru Hulu and saw other shows I hadn't heard of before, IZombie, Shadow Hunters and that sort of thing. there were so many of them!
What are these shows teaching the younger population? It's already bad enough that so many have stopped believing in pretty much anything.

 Could it be that these themes are so popular because
 those that have lost their faiths are looking for something to believe in? 
Could it be that kids these days are yearning for
something to follow and believe in? 

I only wish the major networks would show something that people can really hold onto! Something they really can believe... not gore and blood and violence.

ok off my Soapbox ! 

Wednesday, February 3, 2016

My day

I need to sit and cry.  

Today started out as a beautiful day !!
While riding up to DC with Diane this morning, I kept getting dizzy and nauseous. I thought after I dropped her off, if I still felt bad, I'd sit in the car until I was better.
I dropped Her off at work, met up with my sis for coffee, and decided to go home thru rock creek park. It is soooo gorgeous I decided to stop, walk around and took pics. Sooo lovely! I was on the phone w my momma and she said every other word I said was oooooohhhh or wow!!! Or gorgeous!!! Lol really really was! Was out there for about 45 minutes I think. Just lovely!!! 
Afterwards went to joanne's for some retail therapy. When I got back home I called dr Steens office to see if I could come in later - was running late. They said yes so I thought 3 would be plenty of time to eat lunch clean up little bit and go. Well about 220 while already in the road ,  I realized/remembered the car was low on gas. Stopped to get gas, opened my purse, looked for my wallet.... 
Yup!!! It wasn't there. I called joannes & asked if I left my wallet. Nope. 
So I asked to gas station attendant  if I could write them a check. "No no Y no."  (My mom in her broken English) not finding my wallet is bad enough.. Car was nearly empty I was stressed & running late. I snapped at the guy on the register. I apologized for snapping right away, it's  not his fault they don't accept checks. Only reason I had they check book was to pay a bill earlier in the morning. 

I went to the car and turned the key to start the engine. I was just about to pull away when a woman knocked on the window. She asked what has happened and I told her I could not find my wallet and I had to be in Georgetown University Hospital for an appointment. She asked me to go back in the store with her and paid $5 to the cashier. I asked if I could pay her back by check in the mail or something but she said "no its Cool"

So I put the $5 in the car and thanks be to God that took me to just barely under half a tank!!! I was already running late and then traffic and let me tell you my patience was/is at a very low place right now (at a premium? Is that the right phrase?). 
When I get to the hospital, I saw the parking area was closed off. I turned into somewhere that I saw after I turned in, said do not enter in big letters inside a red stop sign. :-( these two guys that keep the parking area and the drop off zone flowing smoothly, ran Towards me hollering. I stopped the car and had to back up. Asked where to park they said the garage. But I saw parking is $10 for the first frikin hour!!!! I had to park. Was at that point already 3:09. I don't know what I'm going to do. I'm falling asleep right now.  Oh and they said my original appointment was for 1:30 not 2;30!!! Argggggg 

Close up of ice 

Friday, January 29, 2016

Pulmonary Hypertension Association's #Heart2CurePH 30-Second TV Ad

Keep an eye out for #PHA's commercial on TV!!!

this is a #PHantastic PSA from #PHA #Heart2CurePH 30-second TV Ad #PHAssociation @PHAssociation #SickGirlProblems

Sunday, January 17, 2016


i can honestly say I hate my dependence on Coca-Cola​. I wake up with a headache , and i drink Coke in the morning. I get upset, and I drink Coke. I get bored, I get depressed, I get happy, I get thirsty.... man, sounds like my shopping addiction... :(  - which honestly is a real thing, so please no laughing.... 

this Coca-Cola addiction is expensive, does nothing for my health, well, let me say nothing good for my health, and that should include my waste line as well!  


But there's something about a Coke!! When you pop the top and the fizziness hits you smack in the face. And you take a big breathe in, and you feel the fizziness in your nostrils. and as you sip in the golden amber colored fluid, it fills your soul. 

Arggg!!! Now I need a Coke!!!!

Friday, January 1, 2016

Ready or not... it's 2016

I don't think I'm ready for it. 2015 went by so incredibly fast! I couldn't believe when it was already Easter, let alone, Halloween and then Christmas, and now 2015 is over... 
So what will I do for 2016 to make my life better, to make me a better person? What CAN I do, should be question.... 
I dont even know where to begin when it comes to bettering myself. 

The following should not be viewed as resolutions. I have always felt resolutions lead to failure, on my part anyhow. The following should also not viewed as goals.... since 1998, when I was given two years to live, I have never been able to forget that and always wonder, will there be enough time to meet these goals, will I still be alive to complete them ? So I don't make goals either. 

What you should view them as, as I am writing this, I am brainstorming. There are a few things I know I really would love to do. 

1. Get back to church!!! Start my every waking moment with prayer and eyes turned towards the Lord. 
2. I want to emulate people who have shown through their life's work, that they are holy people, that they care and do whatever they can help people. 
3. I want to pick up the random acts of  kindness (RAK). I used to hold myself to doing RAK every day that I'm out and about... but found you can even do them online... I stopped doing RAK, I guess because of depression and never going anywhere. 

This is where my list of known things I'd like to achieve ends. What follows is just me brainstorming. and i'm writing not in any particular order...
  •  Get my health stable, not just the Pulmonary Hypertension, or the Panhypopituitarism, but the chronic pain of fibromyalgia
  •  Walk mor
  • Eat Healthier
  • lose weight and get rid of any unhealthy eating habits
  • work on my crafting to make it more professional 
  • start a store to sell my crafts, giving a portion of the proceeds to PHA & PHAware.
  • Get a new PCP that I actually like
  • Find a therapist and stick to going
  • Don't let the pains or exhaustions stop my from living my life and canceling appointments. 
there's so much more I'd like to do, to achieve, to work towards. but I think, this is about it. 

#PHorTheCure #PHAware #PHAssociation #PHAwesome #SickGirlProblems