I do think this is true but.... =

I don't mean to be ungrateful for the past 18 years of my life that I've been given. This gift of time with my family and friends and PHriends- but this chronic disease has not passed. In fact I've gotten a few more. I'm getting to a point where platitudes, instead of giving me comfort, are starting to piss me off! Maybe it's cuz I'm going thru bit of depression with anger and resentment right now. Coming up on 18 yrs since diagnosis does something to u - well to me anyways. I see my PHriends passing away, or struggling to live, I see babies in pain undergoing major medical procedures,  and truly I have to ask "Why, My God? Why?"  I don't want to ask.  I don't. But I feel like I must. I know I won't get a response. I know God hears me. I do. I'm afraid for Adriana. I'm afraid for Michael. I mourn for those that pass, those who are close to me and those I've never met but know online.  Why? Why My God? Honestly honestly in ALL HONESTY I am sooooo glad I got sick instead of my children or anyone else in my family. I look at my kids and know they too are battling their own things. If I could I would take that from them too. Why? Why are we fighting for life, some of us literally, some of us are fighting for what they believe is a normal life, without anxiety, pain or sadness. Why do we need to fight? I guess that would be my ultimate question for my Lord and God. But it's not for me to ask. So I say it only in my mind and never out loud.  I don't feel any stronger; emotionally now, all these years since being sick. Yes I am stronger physically, but does that count when all I can do is sit and watch movies or spend my days on social media? Why is that all I can do u may ask? It's all due to chronic pain.

I dont want to end this post on a negative or sad note. I didn't want this to be about me. I didn't want this to be a sad post. I wanted it be more like , well not this..... i dont know what I want, what I wanted to say... 

doesn't it always feel like i'm complaining about something? I thank you from the bottom of my sick heart ( lol )  continuing to read this and hopefully you wont stop reading this blog...  If you dont mind, leave me a comment and let me know what you think about this post or my blog. thanks!!!

HUGS n Periwinkle Kisses

Traveling with Pulmonary Hypertension

I was very fortunate to be able to go to the Pulmonary Hypertension Association's PHA On The Road. One The Road is a mini single day conference. Information, support, friendship and hope abounds at On The Road and Conference a like! I was asked to speak about Traveling with Pulmonary Hypertension... I have had lots of experience traveling with PH, while on the iv medication Flolan, and on regular oral medications. So I felt confident talking about this subject.

I usually feel very nervous when speaking in front of people, even though I love the feeling I get when I'm told that people learned from me, like I did after this On The Road day. But since I'm so nervous, I like to have written down what I'm going to say, so that I'm not sitting there going uhm! uhm! uhm! lol

the following is what I said at the PHA On The Road
#PHAware #PHAssociation #PHAOnTheRoad #SickGirlProblems #HugsnPeriwinkleKisses

Travel like Most things in Life can be as stressful or stress free as we make it out to be. Even outside influences can be made easier with a bit of planning. In order to get here at a good time, i made plans a-b and c. I had to watch my granddaughter Ellie over night so my daughter could work a 13 hour shift. If my daughter couldn't pick up my Elie before 8, I wouldn't be able t get a ride with my sister and her husband, and I would have to find a different way to get here.  I researched grey hound and found the ride was about 4 hours long and a little more than $20. Then , I thought, if she's not here by 10am, I'd have to figure out something else. I called a friend I knew was coming and told her of my dilemma. I went to bed felling so much more confident that I would make it here without too much hassle! 

Planning what you will take with you is very important but  knowing where you will put ur belongings can become a matter of life and death, when traveling with a chronic and rare disease like PH. if you pack your flolan or Remodulin in ur check in luggage on an airplane, did u know it will freeze and become basically useless. What if ur check in has been lost? All ur mixing supplies, meds, oral meds, etcetera could be gone. where would you go to get them replaced? 
Researching and planning for these unforeseen and unfortunate events could very literally save your life. Did you research local ph docs before coming here today? What about ordering O2 for the day or night ? 

Have you flown since being on IV meds? When I was on flolan, I flew at least once a year home to SoCal. Going thru security I was always told to remove my fanny pack. No matter how many times I insisted they still said I needed to remove my cadd pump. That's when I would take out my medical binder from my backpack. By planning ahead and talking to my doctors before hand, dr frost, my specialist, agreed to write a letter to anyone who insisted I remove my catheter, or asked me why I was carrying around 20 bottles of meds.  
Your pumps should also never go thru the X-ray machines. The frequency of these machines can mess up your pump, either by screwing w the dose or other just as dangerous things. 
Flying with your Cpap can also cause issues if you are not prepared. Just like ur laptop, your Cpap or bipap machine has to come out of its bag  at security. Under the discretion  of the tsa agents, they may remove the Cpap from the conveyor belt and swab the machine. You have the right to request they use a clean pair of gloves and a new swab stick & pad. You should never let ur machine out of your site either. Walk with the agent as they check it, making sure u 1. Don't lose it, and 2. It's not dropped or broken.  

Before booking your tickets, if needed, you can request a wheel chair at all locations. I do recommend getting the wheel chair. I always do. Travel is exhausting for me , packing and preparing for the flight, driving the airport or taking a shuttle, unloading luggage standing in line and more. Who knows how much energy I'll have after all this.  So I always ask for a Wheelchair. 
If oxygen is needed on the flight , at Your destination or anywhere in between, contact your local O2 company who will give u the info you need. Plus now, you need your own personal portable oxygen concentrator for any flights. Tanks are no longer provided. 

As with most all things you do for the first time after being diagnosed with pulmonary hypertension, consult with your specialists to make sure it's ok for you to travel out of state or out of the country. 
As you can see with a little preparation and research you can actually enjoy your trip and not be stressed out before ever leaving your home. 

Alex Flipse's Personal Page for 2015 Days of Unity

Alex Flipse's Personal Page for 2015 Days of Unity

This is my o2breathe.org webpage for my unity walk! I am again going to try to walk in honor or all of us, the PHighters, the Warriors, The Heroes! and of course, for all our loved ones that have passed due to this horrible disease! I plan to begin my walk tomorrow, May 5, 2015, the World Pulmonary Hypertension Day 2015. all proceeds go to the Pulmonary Hypertension Association ! ‪#‎PHAware‬ ‪#‎TeamPHenomHope‬ ‪#‎UnityWalk‬ ‪#‎DaysofUnity‬‪#‎WorldPHDay2015‬ ‪#‎SickGirlProblems‬

Please help me raise $500 for PHA and help us find the cure!

thank you so much for reading my blog and if you can, for donating to this very very important, and close to my heart (pun intended) cause! 

I saw this and I had to write and write and write.....

A graphic I saw on facebook tonight

This is my every night. just wish something different might happen every once in a while. you know? yes I know i just got back from a wonderful wonderful vacay!!! however, here I sit, watching grey's anatomy trying to get caught up... maybe my kids are right. ? maybe I'm not really living. maybe i'm surviving. i just feel so old lately. not enough energy or umph or whatever. maybe do you think i'm set in my ways? arggggg i should be filled with happiness for my wonderful trip meeting so many wonderful family members!!! seeing my niece and nephew and spending the day with the... seeing my sister, spending a day with her... getting a few minutes with my Godmother.... I'll take any time I can with my family... i'm glad to be home. dont get me wrong. i'm soooo glad I went!!! I'm SOOOOO GLAD I went!!! Grateful to my family that paid for me to be able to go! but then I come home to the same old same old. I dont know. Am I asking too much? Am I expecting too much? I think maybe I am.... I guess if I had someone to sit with me and cuddle with me and watch tv with me... maybe I wouldn't be so much like this.... i just dont know why I can't make ME enough for ME. I'm trying to learn, to expand my horizons... to better myself. yeah. it's only been two full days that i've been back from SoCal and Mexico... maybe I am expecting too much from myself. I mean, I am chronically ill. I do get tired very easily lately. I can only do so much with my time and energy and I have to keep watch over my limited amount of energy...

why does everything in my life, in my body, my mind, my plans, why do these things have to have PH hanging over it? I have been sick with Pulmonary Hypertension for 16 years.... SIXTEEN YEARS! I can say I have been struggling to breathe, to survive... but now I'm wondering, have I been fighting to live? and have I really been living if I spend so much frikin time online.. watching tv, crafting? I took some amazing pics while I was on vacation. I mentioned to a friend that one of my uncles works for the government in Mexico, in their tourist dept. They PAY him to travel and take pics of his surrounding areas. Why, I asked, Can't I find a job like that. her answer was I could if I really tried. but of course, my response was, I never went to college, never studied photography, dont have any experience job wise, taking pics... and of course, I'm chronically ill. who would want someone who's chronically ill to work for them? 

these are things that I think about all the time. honestly. I do want to know if someone would want to hire a person who would call in sick let's just say 1/4 of the time. so that would be, what? let's say for shits and giggles, 2 days a week, they would be too sick to work. ok now let's look at me.... with my pulmonary hypertension, i can say that I barely missed work. however, with my fibromyalgia, panhypopituitarism, chronic pain due to sciatica and so many more other autoimmune diseases, I started having to miss work 3-4 times a week. yeah... no one would want me to work for them.... 

Of course, you dont say that in an interview do you? I'm all about full disclosure from the get go. I want them to know what in the heck they are getting into with me. you know? It's also illegal for me to NOT say that I'm disabled. In fact, in all my jobs, as far back as I can remember, I have had to call into the IRS automatic phone line to answer some questions, including: Are you disabled and receiving social security disability insurance? why yes. yes I am. and then they take you to a live operator who asks you all kinds of other questions. so they will know. and if you don't tell them, they can fire you for it. soooooo I'm all about full disclosure. this is me. this is who I am and how I think.

I also would not want to wait to tell someone, that I was interested in, that hey, and btw, now that we have been seeing eachother so such and such a time, i wanted to let you know, I have a chronic, progressive, incurable disease, oh and btw, it will someday kill me. let me just throw that in there too. you think? no. could be why I've taken myself off the dating sites. I dont know.

So Friday night,, twelve twenty-three a.m. and I'm about to turn off these lights and go to sleep.....

GN!

Stop it!!!

saw this image today. totally made me think!

how many of us have dark negative thoughts when we should be having thoughts of light and love?
we are Light and Love. Beautiful, Brilliant, Loving & Loveable. We shine even through our depressions. We breathe and live and love thru the pain. what is stopping us from thinking and living the light that we are?

stop the negative self talk... I have this problem too. self deprecating, my sister says... my bff now tells me, stop talking to my friend like that!

How many of us would actually speak to others the way we speak to ourselves?
"You're fat. you're stupid. idiot! fucking think idiot! "

I have actually been catching myself lately. yesterday i went to the fridge for dinner. pulled out leftovers. saw leftovers from a meal i went to with my family and said.. You idiot! think. and then I responded to myself You are not an idiot. You didn't think. you are hungry and you just pulled out the first thing you saw. when i came out into the living room , I saw my bf beaming! :)

Let's work on this together if this is your problem too. ok?
comment yes if you want to...  we'll work on this.. encourage each other...  read set Stop It! 

Just another Brick in the Wall

Have you ever felt as if you have hit a brick wall? of course not literally... but like you just cannot move another muscle, or you just cannot stand for anymore time or you'll fall flat on your face?

well, I have hit that brick wall so many times this past week and a half, it's not even funny. Some people think when you say you are crashing, it means i can go another hour and I'll be ok..  But if I say I'm crashing, I mean, right now this very instant, get me somewhere where i can sit or I will fall over. If i saw I need to puke, don't stand there looking at me like I'm stupid. I mean, I cannot move fast enough or far enough to get to the toilet, trash can, sink, whatever, to make it and u need to bring me something before it goes everywhere.


Daily life with a chronic illness, and in my case, several chronic illnesses, isn't fun and games... not usually. yeah i take lots of pics of me and my family, especially my gorgeous grand! :) :) :) she is the light of my life! but if u look close enough, you can see how really exhausted I am, just hiding it behind the smile. People have asked me why I dont just show how I really am, or when asked how I feel, tell the truth... well, it's easier to hide behind a smile and say "I'm Alright", than to explain to you how I really feel and how things really are.

telling someone who doesn't understand Pulmonary Hypertension, panhypopituitarism or fibromyalgia, and let's be honest, if you dont have these things, you dont understand what living with it is like... is 1. exhausting in and of itself. because you see their eyes glaze over and you just want to stop talking. 2. makes you more acutely aware of how things really are, and 3. makes it all the more real for yourself.  So I'll stick with I'm Alright thanks, hiding behind the smiles.

I put the bricks up to shield myself from the outside and to protect myself from what i'm really feeling, thinking.

All in all it's just another brick in the wall.

on a scale of 1 to 10

i need to talk for a bit here.

this is the second worst day of pain that i have had in several weeks. like usual though, it has come with exhaustion and nausea and dizziness. :( i can't even craft today, even the glue gun is too heavy.

 i'm keeping hydrated with crystal light ... ive stopped coke... do you think this is why i'm in such pain? It's been about about week now. I see the endocrinologist tomorrow... was going to the Vietnamese embassy to watch a free movie and get a tour around the embassy today. now there's no way. i just feel so awful. dont wanna cry. not going to cry!



i think i need to sleep. this really really sucks... you know? I feel this lump n my throat butu keep pushing it down. i am NOT going to cry. so tired. so much fucking pain. :( :( :(  i know i've been blessed with more good than bad days. mostly good days! in the past several years. but now.... i just want to curl up and sleep.... but then i think i'm wasting my life by sleeping it away. we all know how precious life is... so why am i wasting it. even if i'm up  watching tv or crafting or talking to you guys, i feel at least i'm doing SOMETHING. you know?


 on a scale of 1 - 10 where 1 is no pain and ten is the worst pain you've ever had in all your life.... i'm at a 7.5 or 8