Let Hope Rise….


Im starting to feel a little better Thank God.


Trying to Bloom again

roses reflectionFacebook’s new status asks “How do you feel?”  I want to write awful somedays, and just don’t. No one really wants to hear that you are temporarily down, fighting your way back to the light. No one really is interested in your drama, they all have enough of their own. If we are lucky, we have a few individuals who really care. The rest are screen actors in the play of our lives.

I look at my reflection in the mirror, I am quite unrecognizable to the woman I once was.  I feel much like the lovely rose I placed above this post. A bright vivid flower I am, desperately trying to find an environment where I can thrive, live. I look and all I can see is darkness, my dark reflection of myself.

I guess I m complaining that my family has not come to terms with my illness, when in fact I have not myself.

I just saw this article, about a man with MS and it was geared at those of us living with chronic illness. He said when things get tough for him, he reminds himself that tomorrow, today will be yesterday.  I like that.

I have tickets to a wonderful concert in a week and I am so scared I’ll still be sick. Of course my visit to the emergency room was FRUITLESS and I received no help so I remain dizzy and short of breath.

please pray for me.

Why I do not go to the Emergency Room

I am strong

I am watching the Concert for HOPE & Healing online at http://christianconcertalerts.com/

Its great. I definitely needed the boost of FAITH & HOPE.

I wanted to update you. I have been SOB on exertion,, with chest pain from last Wednesday. Sounds my usual. But now it was also at rest Went to my PMD  on Friday, I couldn’t even drive my sister-in-law took me.

He said I should go to ER. But my mom and son were sick so I tried to hold out.

But then I  became Very dizzy. the dizziness, so severe over the weekend almost passing out more than once made me realize I needed more evaluation. My family was driving me crazy to get help.

I went to the ER yesterday around 11:30 -12 noon. . They did an X-ray and blood work including cultures.

From 2-3 PM I sat alone in a cubicle room my cardiac monitor not functioning, showing systole alarm blaring. I called for the nurse for help. No one came.

Finally 1.5 hours later, alarm still blaring I disconnected myself from o2 and cardiac and walked to station.

No one could identify who my nurse was. The doctor there said my X-ray was abnormal, but “normal” for PH with enlarged heart. [?]

She also said all my labs were fine, and she was tying to contact my MD.

No one ever came back in to fix my cardiac monitor or see me again until I went back out around 5:30.

MD came around 5:45. He wanted to get an ultrasound machine [?] to assess my chest, but came back and said they would not let him borrow it [?]

He asked me a few questions, listened to my lungs and heart and came back basically telling me its fluid, take diuretics and stay there and reassess. I explained I had been doing that for days, and was worried about the CP and Dizziness, even when sitting down.

He basically said it’s not cardiac, that he read the big shot cardiologist  report [over 1-year-old] and if that specialist was not going to do a cardiac work up then he certainly was not going to. He indicated it was one of three things

Not a clot, probably fluid, I can’t recall what he said was # 3 could be and of course, that I was over weight. I was very upset you might imagine, as I do not go to ER unless I rally need help beyond what I already know to do.

His plan was for me to take diuretics, and walk back and forth to the ED bathroom [alone and dizzy, SOB on E] which was disgusting blood all over floor, every 5-10 minutes as I go with diuretics and then if I felt better could go home. I asked him when he was coming back, he said he was not, he was going home.

I asked him who would be following me he said he didn’t know. I asked at the station who was my RN, still no one .

my BP was 180 over 88 HR 90-110 no one was monitoring my heart, or me so I took the meds I called my aunt and went home around 7:30 PM.

I am the same, a little less SOB as long as I don’t try to talk and walk or etc… but still cp and dizzy intermittently with the vibrant memory of a fruitless effort to help myself.

This is why I don’t go to ED

I will seek cardiac evaluation at another institution where they wont be prejudiced against my based on a old report which determined that I’m just too fat.

Thanks for listening.


Keeping track….. limbo land.


I continue to be fatigued and really tired.  SOB on exertion, sometimes at rest and to add a new twist I have been dizzy & light-headed enough to feel like I was going to lose consciousness a few times.  Hot /cold flashes.. I’m so tired of this shit.

I know I should go to the ER, but do not want to go. They do all sorts of test, tell me  they can’t get clear test results  because I’m too fat, that my illness is worse, cause I’m too fat and basically come home with the  same multiple diagnosis BS,  a tweak to my meds and the confirmed diagnosis that I’m too fat. Meanwhile I’m dragging my IV pole back and forth to the Bathroom thanks to the IV lasix, can’t sleep in their beds and become even more exhausted.  Last time I didn’t sleep for 2 days and stayed up all night .. you guessed it.. Trying to  bead & trying to breathe!

I’m all packed, just in case I have no choice, but I know I’m walking a tightrope here. I feel guilty that I couldn’t help babysit my darling little niece today, but I could not take that chance.

I wanted to do bead work today, bit cannot muster up the energy to do so. I find it so relaxing, and meditative.

Maybe later. Im in limbo. For me its nap time again…… CatSleeping

Just Let Me Breathe

butterflies are free....

I did so much today, yet I did nothing. I am so tired, and do not want to go to nap at 5:33 pm. I want to do bead work, and make dinner, and stay awake.

Yes I am fading fast. And I know any time now my teenager will come down to ask for a drive here or there…. draining any last hope I might have of siphoning out a little more productivity….. I miss him when he goes out, but ya know, they gotta grow….

I realized today WHY I created this blog.  A few days ago I came across a blog from a fellow PH-er. She was able to express so many similar feelings, and it did actually soothe me. For a few minutes I didn’t feel so alone, and somehow felt validated. My own brothers says I’m “not really sick”  because  from the outside I “look” fine.  [he is mean-spirited and obnoxious by nature though] PH makes you so sick inside….

I do not really have anyone to talk to.  My Mom I am closest to, but she is having health issues of her own, [I am trying to help her whenever I can in fact which is draining me] and  she cannot really emotionally handle the fact that I have this illness to begin with.

She is constantly freaking out over my condition, and when I have those REALLY bad SOB exhausted days, she gets so upset. So I try to hide it, don’t answer the phone, etc. But last week I didn’t answer cause I was sooo fatigued and not feeling well and she insisted my Aunt drive her to my house 2 towns away to make sure I wasn’t dead or something!

The rest of my already tiny family has their own stuff, also do not want to deal with my diagnosis.  I am a single /widowed Mom, My poor teenager, well his depression over my status is killing me faster than this illness.

My best friend died 2 years ago, and the loss was devastating. She suffered her own path of illness over many years, and lived very far.. too far to visit … but I always felt better just knowing she was on earth someplace thinking of me, sending me love and prayers as I was for her.

My only other true friend has her own difficult path, and so we try our best to be “Simon” for each other” but it is what it is….

Honestly, the only one I can kind of count on these days is someone I had least expected, and for that I am most grateful.

So, I am here pounding these keys letting these feelings out to an invisible internet world, where no one can judge me. No one can yell at me for “upsetting” Mom or anyone else with details of my illness or how my life is falling apart. No one may ever read this stuff at all. If so, that’s fine.

but, if by some chance, this eruption of words and feelings coursing through my achy breaky hands onto this keyboard helps one other person Ph-er or not, then so be it.

And if you do read this, and think I am some kind of whiner, I tell you no. I am a PH-iter and will not give up. I just needed a safe place.  BTW,  if Al Gore REALLY invented the internet, I just like to  say Thanks.  LOL!

Ok, Ill take the nap…. For a little while….