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....