Friday, November 27, 2015

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....

Friday, November 13, 2015

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!! 

Saturday, November 7, 2015

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!!!

Wednesday, November 4, 2015

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....