I've come a long way baby!

A dear friend of mine posted this image on my FB page. I was going to respond on FB but decided it was good enough to share here. 

I'm pretty proud of how far I have come!

 Depression , btw, hits me regardless how I'm feeling or what I'm doing in my life. I don't get depressed cuz I hate my life or myself. It's a chemical misfiring in my brain. 

This is what I have been working towards for many many years. I'm not there yet. Not by a long shot.  But at least I'm that much closer to liking myself let alone loving myself.  U know, I lost who I was for many many years. Didn't have any idea. Was one of the darkest times in my life.  Now I know that I can be ME , while being mother, grandmother, friend, daughter, sister and so on 

I can't say I'm half way there, but i have started and been working diligently day by day , sometimes hour by hour and even still moment by moment; to get as far as I have come so far! Believe me when I say I have come far!!! I no longer HATE myself. I no longer do nearly as much negative self talk. "You are stupid" "you are fat" "idiot" etc. that's almost completely gone, thanks to my bff Diane. When she heard me call myself stupid out loud,  she said to me "hey! Don't talk to my friend that way!"  And now I hear her voice in my head whenever I start the self loathing behaviors. 

Thank you Diane! 

And thank you Neeta for posting this on my page! Love you guys!! 

Update ! December 12, 2015

Hi everyone! I promised you guys an update and I 'm sorry I'm late getting online today... (yesterday it's nearly 1am.) But I had a wonderful time hanging out with Carlena and then when I got back home, my roomie and I had a fabulous time cooking and she gave me some awesome critiques about some gifts i'm making for family.

So... I'm going to keep this short since it's so late already, anyways I hope to. lol

I have always had a problem with depression hitting me hard during late fall early winter. It was mid to late September when I started feeling the blahs... The blahs turned into the blues, and then by late October, I was in full blown depression. Early'ish December I started having suicidal ideations. So let me tell you a little bit about the ideations that I have. but I want to make one thing PERFECTLY clear to everyone and anyone reading who thinks that I WANTED to die. NOPE!!!!! never have I said I wanted to  hurt myself, or worse, and truly truly meant it. I have a saying that I like to repeat to myself when I'm at my worst.

 It is our our Instinct not to become Extinct

So the ideations that I have are like a movie playing in my head. I dont want to see these movies playing. Wish there was something fun playing, a musical or romantic comedy... but no.... lol They come on their own, usually only when I'm at my worst point of depression. When everything is dark and cold and scary. When I feel so unloved, unworthy, that I start thinking, maybe the world would be a better place without me in it. Maybe my children and grand d would be better off with me to ruin their lives. Now, while i'm NOT in depression, i see how wrong that is. But when I am in major major depression as i usually get this time of year, I even feel unloved by God Himself. I feel myself left alone, abandoned by God. I shout in my head, "why have You forsaken me?" no I know I am NOT Jesus and I certainly wasn't in that kind of excruciating torture that Jesus must have been in. I can't even begin to imagine. and knowing full well that Christ died on the cross for our sins gives me such pause now because I had those ideations. 

Debbie, my sister, came with me to the E.R. on the 6th. I shared everything with the lady wwho registered me. then, the nurse that triaged me. then another nurse who was in the back taking care of me. i pretty much yelled at him when he asked why I was there. I said "I just told two other people the whole thing". he insisted so I said I would keep it short and sweet. I said to him, very slowly, making sure I enunciated  every single syllable "I DO NOT WANT TO LIVE ANYMORE".  and then I asked if that was good enough for him. he had A  psychiatric nurse come down and speak to me. i wasn't as rude to her, thankfully, but I was sick of telling the world how awful I felt, how alone and miserable and unloved I felt. 

I was asked if I was voluntarily signing myself in, and yes I did. thankfully, because while I was there, I received very very care from the doctors and nurses and staff members. Since I've been to that hospital before, I was recognized by several staff who approached me said If I needed anything, to be sure to let them know. I wasn't allowed to have soda in the hospital, but somehow I snuck in a coke, a liter and a quarter. i guess it must have been under the blanket when I was wheeled into the psych ward. I drank several sips during the time I was there to make it last until the day I was discharged on the 10th, and I only had a few swallows left. truly helped to keep the migraines at bay. however, I did say that I dont drink water, which is true, so they gave me a soda, decaffeinated, goldish in color, i can't think of the name right now. anyways, I was able to have that with my meals and while taking meds. was very glad for that. 

The day before I was discharged, the 9th of December, I was complaining to my sister about the care I was NOT receiving there. She mentioned that if I could, I should try to get transferred to Sibley hospital in Washington DC. The day before, I had met for the first time with my social worker, a wonderful and kind woman with a heart of gold. She was patient with me as I shared my medical history, my family history, and why I was there. She got me a box of tissue when i was bawling my eyes out, but never once did she say she had to go, or she was in a hurry... never once did she look down at her watch, or make a face at me or anything, and the 2 sessions I had with her, both were more than an hour, Anyways, my social worker told me about a treatment done for people who take antidepressants but either do not get any relief whatsoever, or get relief for a short while and then it stops all together, like me. The treatment is called Electroconvulsive therapy - ECT, but thankfully I found Transcranial Electromagnetic Stimulation.  I asked the staff at the front desk several times, if they could print some information for me on TES but I had to ask many times before they were able to, and apparently, they aren't able to print anything out for you that isn't suggested by the doctors themselves. So i was grateful they could, regardless how many times I bugged the about it. 

Debbie was able to look up TES for me and found a doctor at Sibley Hospital who does that. however, when I was reading about it, one of the first side effects was Syncope. yeah,.... dont know about that. I saw my shrink twice the entire time I was there, and I asked about being transferred to Sibley.Sibley is part of  Hopkins, which I didn't know, but they all assumed that's why I wanted to go there. I wasn't going to tell them otherwise. 

So I was discharged from WAH on the condition that I would go to Sibley E.R. and get admitted. I mean, I went to Sibley after eating and showering, and getting fresh clothes on, not in that order. lol  I explained to the docs at sibley what happened and why I had requested to go there and out of WAH, However, I had not had an ideation all day, Except one in the wee hours when they went in to the room, woke me up to take blood. and yes, in case you were wondering I did let the know at Sibley.  

However, since I was no longer suicidal, actively or otherwise, they found me not to be a threat to myself or others. 

 Sooooo I went home. and that's the end!!!!! Good night!!!! it's nearly 1;45am now. this took a lot longer than I had wanted. lol

Hugs & Periwinkle Kisses!

I'm done.

What is on my mind? If it's a good day no no   if that PART of the day is good , nothing is on my mind.  When I'm watching a show or movie my mind is blank. I think of nothing. If it's a good show nothing can creep into my conscious thoughts but if I get up to go to the  room or get q drink or laying down in bed like now,y mind is a wash with emotions, emotions I had tried all fucking day not to feel or think about. Doesn't matter if two seconds ago I was cool. Once the head phones Coke off its all  over. And the flood gates get pushed wide opened . And there's not a damn thing I can do about it.  I used to not cry.  I didn't. I stopped when my kids were. young.  I was told I needed to let them see me be scared vulnerable etc.  when I they laughed. Like ive said. Before.  It was prob their coping skills. But that was the last time.  Now it's like I can't stop it anymore. I so want to give up and give in and not fight anymore. The only fight I have left in me is Take my pills my meds.  So now laying in bed in the dark w all this shit rushing over me is like a truck hitting me at 90 miles per hour.... I just.

For the most part I was able up keep my mind from thinking too much.

No Everything not ok. I'm a fucking wreck. My life is like a ball of string tangled and broken and frayed.  I don't want to be fixed.  I don't know what I want.

Can I scream? Can I cuss at the world and cry out ? Can I shake my fists at the heavens? Will any of do any good? I didn't think so.

So I keep myself from thinking. Stop my self from feeling, for as long as I can. I would so love to be able to do something to numb myself up. But that I cannot do. No drugs or alcohol for me.  I just feel so stinking done.

And then I cry on the phone to total strangers and to people who call to be sure I'm alright. As much as I normally would love to have friends call, like this right now I cannot. But I can't NOT answer. That would be rude right?
I was at giant yesterday and cried at the Check out when I couldn't find my credit card. Someone on the phone told me to calm down. How'd that helpful? I asked before saying I had to hang up. I didn't know this but was told I'm pushing people away and do each time I'm so depressed. I wish there was another word for what I'm going thru, and I know so many others here are too and world wide.  Depressed in such a depressing word. Like someone had their thumb on ur head and they are holding u down, keeping u from having the URGE to fight   I guess that someone is me, or at least the chemical misfiring sin my brain. I can deal with heart and lung disease,  chronic pain, endocrynogical body fighting against itself. What's the word?????

But depression hits and I'm wanting to quit. Wanting to turn tail n leave, and never look back.

That's where I am now.

Going back in time

I have been very contemplative lately. dont know why really.... but if I don't sit and think, things are going to end up driving me crazy!!! crazier. lol so yeah. I have gone back in time in my mind and talked to my grandparents and my sister Susan. I just wish it was real and they could know how they have left a hole in my heart since their passing. not that I want to make them feel guilty, i guess better said, how much I miss them. how much I love them even still. How I have needed them in my life so many times.
i would so love a hug from my grandparents Momma Elodia, and Papa Arturo!  When I was young, when they were still with us, my Papa Arturo would sit with me and tell me stories of his youth. I wish I would have paid attention! instead, I was bored and my mind would wander. I can still smell his cologne, Old Spice. lol I so wanted the sweater he always wore. the old man type of sweater!! I used to snuggle into it when I was young.  and my grandmother, Momma Elodia, would teach me to cook and sew. I wish I could remember everything she tried to teach me! Susan and I would sing together, all the time.

She would  play her acoustic 6 string and would do such beautiful harmonies!! I'm sure that is why she named her baby girl Harmony. not such a baby girl anymore, I'm so proud of Susan's kids! They are so wonderful!  Susan was always so full of love. She would always come over arms overloaded with gifts for my children, but more than that, she would sit on the floor with them and play and color! She'd read to them for ours, making silly voices for each character, making my girls laugh and laugh! and when she brought them once roller skates for their birthdays, she was out there skating with them, since I could not. Susan had all the energy in the world and would shower all her nieces and nephews and then her own children, with love and attention and everything they ever wanted. I wish I had that kind of energy, but I was already too sick at that time.

I miss them so much! my grandparents, Susan, all those that have passed that were near and dear to me!! I wish I would have known my other grandparents!

That was one thing I always regretted. living in a different country than the rest of the family, i never knew them....

Pulmonary Hypertension Awareness Month

Congressional Luncheon 2014 and 2013 With fellow patients from all across the country

Each year in November, the Pulmonary Hypertension community joins together virtually, as well as in real life, to bring awareness to this horrible disease. It takes so long for Pulmonary Hypertension patients to be correctly diagnosed due to the many different conditions the symptoms mimic. It took nearly 3 years for me to be diagnosed properly with Pulmonary Arterial Hypertension, (PAH). Well, actually back them, it was still being called Primary Pulmonary Hypertension. Primary meaning there are no underlying conditions that could cause a person to get the condition. Now many years later, as we know, PH has been classified into several different conditions, and causes for the condition.... 

I'm still primary, or idiopathic,meaning of unknown cause. 

Back to what I was saying about November. November is our awareness month for PH, and for as long as I've known about awareness month, I've been getting proclamations from city, county and state government officials. I have been calling radio, television and newspapers trying to get them to have a segment on PH. An old high school friend of mine from Cerritos, CA, actually did this for several years. He is on air talent for a radio station in Long Beach, CA, and I was so thrilled that he wanted to do this for us!! :)

I have spoken on air at a local radio station in Texas, the first few years after diagnosis. In those times, awareness month was in September. I'm not sure why it was changed to november of all months! lol We're getting ready for Thanksgiving and all the holidays, as well as starting holiday shopping! I have had a few fundraisers in recent years, a Pizza For the Cure, a Paint Night for a Cure, are just two that i can remember off the top of my head. 

Many, many support groups and individuals hold major fundraising events, such as Wojo's gold tournaments, Long Beach's Fun Walk, just off the top of my head. 

But the one thing that I always look forward to is Congressional Luncheon and Lobby Day! Unfortunately though, the day was canceled. I believe it was so that others across the country who have a hard time traveling, but still want to be involved can join in on the advocacy by calling, emailing and writing in to their congressional representatives. 

The luncheon has always been a boxed lunch, but the speakers of the luncheon have a very very powerful story to tell! The last keynote speaker was Jessica Armstrong, a veteran of the armed services, who while serving in Afghanistan, developed Pulmonary Hypertension due to clots in her lungs. Chronic Thromboembolic Pulmonary Hypertension, (CTEPH). 

There are so many things that made Congressional Luncheon and Lobby Day so important for me, not just the patient, medical and professional speakers. not just talking to the Health Liaisons to the Congressional Representatives, sharing our stories and watching them so moved by the stories of all the patients that go and lobby, that they are inspired to go immediately and tell their bosses what they just learned.. and not just seeing all my fellow Pulmonary Hypertension patient friends! I guess it's all these things!

 I get to see my family again, yeah, they aren't just friends, but family. Those who know exactly what it's like living with a chronic incurable progressive disease that will one day defeat me, all of us. My family who support me and I hope I support them just as much! My family who cheer me on, share in my joys and hold me up in prayer when I'm down. These amazing people who any time of the day or night are just a click away! It's true that we share one major thing in our lives, but that one major thing is like an adhesive that bonds us together. 

I have been known to say, "why are we celebrating a disease that has taken so many loved ones away from us?" but now I know, we are celebrating our wins, the days we woke up and got out of bed, even though it took every ounce of strength and energy we had for the day. We are celebrating each other and ourselves! and of course, we take this each day out of this month, like I do every other day of the year that I am out and about, to raise awarenesses, in hopes that others out there will be diagnosed a lot sooner than the majority of us out here had been, to not be so severe in their disease and be able to not have to go on such invasive medications. 

Happy Awareness Month!! 

So my doc told me, the last time I went to see him, that I MUST loose weight, that I MUST exercise, that my life and health depend on it. From that point, I have been eating NONSTOP pretty much. I  haven't cared AT ALL about my health, my life, anything. i stopped taking the majority of my meds, except the "Life sustaining" ones: Viagra, Tramadol, Synthroid and Prednisone. For me, those are life sustaining. but I ran out of synthroid and prednisone and last night, I really wanted to go to the E.R. feeling like I was in adrenal insufficiency. today, I doubled up on the pred and synth, and after a nap, woke up better.  yeah I know what I'm doing is slow suicide, as people tell me it is. I just have not cared. i'm back on my antidepressants and everything else. and hopefully will start walking soon. my dear sister Debbie picked up meds from the pharmacy yesterday and I took the ones she brought me. I was actually out of sildenafil for about a week or so and I know that didn't help my health, or lack there of.

I guess I"m sharing this to say, I'm back on the wagon and will start eating better, walking more, and trying to live my life again....................

wish me well!!!

Dealing with Depression

Lately, I have been dealing with a lot of depression. I have not posted much on fb or twitter or any of the other social media sites like I normally do.. except on FB i have been putting out some thoughts I have had, and I know it has been alarming to some. 

I'm usually light and cheerful online, I should say, my online persona is. In real life, depression plagues me nearly daily. Even if I'm having a good day, laughing with family or friends, enjoying a walk in the neighborhood, or whatever, the darkness is still in the back of my mind. I know it's there, how could I not. It's always nagging and pocking at me thoughts. I have found myself, especially these past few days, stopping to think about something, and finding a few minutes later, that the darkness had enveloped me for what felt like a life time, but truly was only a few minutes. 

I sat outside the other evening, enjoying the fresh night air, ,the first time I had gone outside of the apartment in 4 or 5 days, waiting for my daughter to come pick up something she had forgotten. I took a breath in and found myself a few minutes later  with tears being held back by sheer will. Someone had stopped to speak to me and I pulled out of the darkness. This isn't unusual for me. 

Yes I'm on several types of antidepressants and have been for many many years. not the same ones. You wanna know why the doctors call what they do "Practicing Medicine"? Because they haven't gotten it right yet. not for me anyways. I have had so many different types of antidepressants, it's not even funny. i bet you wouldn't be able to name any that I haven't been on, and even some that weren't meant for depression, but they wanted to see if it would work. 

 I have a list ready and available of coping skills.. i could rattle them off now, but i dont wanna bore you. I use coloring as wayl to try to remove the stress somewhat, but when your life is filled with stress like mine, ours, nearly everyone's- how can it not be? - as a parent I worry about my daughters and my granddaughter. I worry about my family,my mom, my siblings, nieces and nephews, inlaws, etc. i worry about my phriends and friends. I worry about the planet and the atmosphere.of course, many people have called me a worry wart, but i have found a way to keep my mind pretty much blank... 
netflix, tv shows, movies etc, and at the same time, crafting of some sort. i used to craft like crazy for my grand but now that nearly 3,000 miles are between us, i doubt i will be doing that anymore. christmas gifts are all but done... just a few more to make.. i used to craft for awareness month, and conferences... sold the proceeds and presented it to pha. last conference was 120 for jewelry and ribbons. lots of fun! music and friends .. wow i guess i did tell you my list, basically. so i know how to care for myself when i get down.
i just dont care right now to care for myself. i dont, i have family calling and sending me pm's. go see a shrink. pray. God will help you. take your meds. etc etc etc. right now, none of these help and i dont care if they do or not. i know when to seek help, inpatient i mean... and those who are close to me know that i have been inpatient for suicidal ideations several times. ok ok many times. like i said, i know what to do and when to do it

I truly truly appreciate and love all the love and support I have gotten online, in person, via phone or text, etc. I even got a skype call from a dear dear friends across the county. It means the world to me knowing that you guys care and pray for me. I do for you guys too.

I'd like to say that this too shall pass, but for those of us with mental illness, it doesn't pass. it doesn't go away. it gets a little better, and then comes back, and gets better and comes back....

I support PHA

18 years ago.....

Eighteen years ago today,  Doctor Frost from the Methodist Hospital (at the time), in Houston Texas diagnosed me with Primary Pulmonary Hypertension (PPH). Primary just means that i have the condition due to unknown causes, it is now called Idiopathic and PH has been categorized by types, so PPH is now known as Pulmonary Arterial Hypertension.

About a week later, I returned to the Methodist Hospital after passing out in the small town I lived in. I woke up from my very first Right Heart Catheterization (RHC) and found myself attached by catheter, tubing and other medical device, to a pump infusing medication into my heart 24 hours a day. Flolan, the med I had to mix every single day, and keep on ice while attached to the pump, came with some heavy heavy side effects. Nausea, vomiting and diarrhea made me loose nearly a hundred pounds in a matter of months. Pain in the jaw didn't help, that I would get with every first bite during each meal, or snacking, of the day. If I salivated at all during the day, I'd get jaw pain. If I thought of food, got a craving, became at all thirsty or hungry, this jaw pain would hit. it was so bad thata most of the time, I'd skip meals to avoid it.  Exhaustion, a symptom of Pulmonary Hypertension, was even worse for me while on Flolan. So was leg pain and fatigue, which I still to this day get, when walking for any length of time.  There were many more side effects, but these were the some of the worst.

Four years later, Tracleer came on the market, an oral pill taken twice a day. Taking a pill a day took place of mixing powdered medications vials, with sterile diluent, a fluid used to make the powdered Flolan into a liquid. Unlike Flolan, Tracleer had very few side effects, dizziness and the possibility of elevated liver enzymes, were the worst, and were easily tolerated by me. Monthly blood draws helps to show if the liver enzymes became elevated and if they did, they would either lower the dose, or discontinue the use of Tracleer. I was on Tracleer for 11 years.

On my eleventh year, I was diagnosed with Pulmonary Venous Hypertension, (PVH)  also called Diastolic Dysfunction, HFPEF, Heart Failure with Preserved Ejection Fraction.and a few other names. I was transitioned off of Tracleer and put onto Sildenafil, the generic form of Viagra. Tracleer, like most other PAH medications, negatively affects PVH.


I have learned a lot through my eighteen years since diagnosis and the two and a half years prior , where I was constantly being misdiagnosed with things such as depression, anxiety, and my fav "We dont know why people pass out, they just do".
a few things that I've learned off the top of my head:
1. You must advocate for yourself. and if you can't (Like I cannot, have never been able to), take someone with you to doctor's appointments and hospital stays or ER visits to advocate for you.

2. Always keep a list of doctors - with phone numbers and addresses - in your wallet or purse, or cell phone. Also add all your medications with dosages, who prescribed them for you, and what they are used for. I keep a written document on my computer to print out when I go see the docs, and I keep a list on my cell phone.

3. Use the ICE - In Case of Emergency - on your phone's contacts. I have my sister, her husband, and myself as ICE. I have myself  because in the notes section of the contacts, Be sure, if you do use ICE, the people you chose know your condition(s) and medication(s) and any allergies you might have....

4. Know the meds you are on. Know any side effects. Know the dosages and what it's for. If you have multiple conditions, (CoMorbidity), it's even more important to know what they are for. If you are on IV or subq meds, know your dosage and when you increase the rate.

5. Be prepared for any emergency. the Pulmonary Hypertension Association  has lots of ideas to help you be prepared. Contact your local fire department, emergency room, electric company, to notify them of your condition. Fire department to let them know what PH is, in case they have never heard of it, to let them know to NEVER turn off your pump, if you are on iv therapy,and what to do if your catheter line breaks. Emergency Rooms also need to be contacted. PH is such a rare disease that a lot of small town hospitals dont know about it. I had to educate the head nurse on what to do, how to mix my Flolan, and phone numbers to call if she needed more help. The Electric Company should be called if your medications need to be kept cold, if you are on oxygen and use a concentration, in case of loss of power due to storm or anything, they need to put you on a list of people who need their power turned on as soon as possible. Sometimes they will advice you to go to the hospital and use their fridges for meds, and use their o2. Mine did this, but that was only because we expected electricity to be out for a few days due to a hurricane that became a tropical depression. Call them too if a storm is expected. Sometimes they are so swamped they don't always check the lists.

6. Make sure to have all your docs communicating with each other. Sometimes, it's as easy as a letter of what happened at your latest appointments, or results from blood work, echo, or RHC. If at all possible, keep all your doctors in one hospital system. It makes things so much easier!

7. Get as much support as you can. Any Chronic Illness will take so much out of  you and can cause depression. With a big support network, of people you can rely on, you know you will always have a meal if you don't have enough energy to cook, or a way to get to appointments if you cannot drive yourself. But more importantly, in my opinion, is emotional support. Online, people you can talk to on the phone, clergy, family, can help so much!! Lean heavily on your beliefs. Pray often. Believe and have faith that a cure will come! and when you can't pray or believe, call someone to help you!! or jump on line.

There's a lot more I'm sure, but just can't think of any at this precise moment.

There is one more thing I have to say. I know I pretty much told you all the bad things about Flolan, but if a doctor were to tell me I needed to get back on it, I'd do it in a heart beat! Flolan saved my life all those years ago. Flolan gave me back a quality of life I never thought I would have. And after being given two years to live, Flolan gave me 4 years and if not for Flolan, I doubt I would be here today!!

Thank you to much loved ones my friends and PHriends. My family and PHamily. You guys are so amazing! I doubt I would be here today if not for you guys too!!!! I love you more than you will ever know!!!! 

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

God has blessed me these past years with feeling good, motivated, energetic, even with chronic illness. i have wondered when the other shoe will drop. you know? I haven't felt "sick" like this in a while. seriously. besides fibro pain, i could have forgotten about PH and chronic illness and all that. more good days than bad. right? but this reminds me how delicate our bodies really are. how many things can really just go wrong and how one day, we will all go kaput.  regardless if you are sick or not... it will happen. Only Jesus rose from the dead. Mary was assumed into heaven body and soul without dying first. but.... i'm not even 10% of the woman my blessed mother is! ok not even .0005% . so..... I wont be assumed and I'm certainly not going to rise from the dead. lol I know things could be sooo much worse.... I know my conditions are small, comparatively. I know my symptoms are tiny comparatively. I know my pain is tiny too. but with that being said, it's all i can focus on. so it seems to take over everything I do. can I cook tonight? do I have energy? and if I do cook, can i clean up the mess I make? can I hold up a glue gun? or is it going to be too heavy? A glass of water gets heavy too!!! can I keep my eyes open long enough to watch a movie? how about a 30 minute tv show? right now, i'd have to say no. i hate feeling like this!  and of course, you do know, with all that comes depression!! so either way i'm screwed. I'm going to go lay down now and try to sleep. hopefully not for the entire evening. i just feel like i'm wasting my life away.

Emotional crap!!!

I'm not a crier. i never was. when i was first diagnosed and couldn't do anything for my kids or myself, i cried all the time....  but they were so young they didn't understand... and their way to cope was to laugh at me. so i forced myself to stop crying and it's been forever since I boo hoo'ed. it hate crying. the way t makes me feel. yesterday i actually sat for five minutes and bawled my eyes out. the pain and exhaustion were so totally overwhelming. but when my roommate walked in, I totally dried off my tears and that was the end of that. now i feel like everything is making me want to cry... ugh!!! :( :( I hate this shit