Wednesday, 28 January 2015

Bad days

I checked phone messages this morning and found one from my nurse saying she had received good news about my last echo cardiogram.  Wants me to call her about getting into another round of pulmonary rehab.  Supposedly I am a good example for others.  
Fucking depressing.  I have not called back and I doubt I will.

My two driver angels have a combined age of 160, bless them.  I can only ask so much.  Pete has a day job and problems of his own and lives 50 miles away. Thats it.  Thats all.  Nada anything or anybody else. Not one single other person, family, friend or acquaintance offering help of any kind, ever. 

Nicole, bless her, is fluently aphasic.  Look it up.  Ya, I know, She seems fine!  She does heroic work.  I love her so much.

Lung transplant takes financial stability.  We are bleeding at a rate of a few hundred a month for a few years now.  Got no more juggling tricks up my sleeve. We are fucked beyond. We will never make it.  I cant fathom anything anymore.  Nicole cant. Too bad. 

Takes a team.  Ha!  

I simply do not have energy for the stuff that has to be done for normal life to happen and I am out of options and people to ask for help.  

I dont feel good at all.  The sense of suffocating never goes away now, ever.  I am able to cope, though.

Sometimes being an infernal optimist makes no fucking sense at all.  It is hard not to be bitter.  I try very hard not to be.  Mostly I am not.  

Would have been easier on me if the test results had been bad. Then at least the ultimately unachievable transplant hopes would be done with.  As it is now, I get to watch it fade away instead. It could be mine if enough people cared. Lovely.  Rub my nose in it, please!  Sweet.

Last couple of months I run out of all my meds before the end of the month and do without.  I told Nicole this morning.  She did not know.  I am feeling somewhat angry so I know I am missing the ssri one.  Its payday!  Nicole will pick up the drugs later today.

I feel so fucking guilty writing this stuff but it matters!  I matter!  I am here!  Dont read if you dont like!  Tell me I deserve any miserable thing that happens to me!  Anything.  If you think I am asking for money change the channel and don't bother me.

I am still fighting.  I still love.  I am afraid.  Imagine rationalizing when you should die, when might be the optimum time for all concerned.  You already know you cant do the ride till the end. Thats a given.  Imagine lack of help and fucking money factoring into your calculations.  Depressing.  


Monday, 26 January 2015

Monday at the front

Most of the time I am able to bliss out, more or less.  I don't know which world is which anymore.  The happy optimistic fellow enjoying his days or the lonely and crushed fool watching his world get smashed bit by little bit.

It's all fun and games until the world comes crashing in.  Then I know, I see.  I see nobody.  I hear nobody.  Nobody wants to know, really.  So it is.  So I made it, obviously.  

There will be no miracles or second lives.  The transplant clock will tick down along with all the other clocks until everything I have or am is smashed to bits.  I fought and fought and did everything I could to keep the moment away.  I did.  I am proud of me still.  I loose.  

I so wish I had started this blog anonymously.  Alice was right about that.  Spilt milk.  Nothing to do now.

I will be ok.  It's in my DNA.  I know that now.  Even at the very end I will see the good, I will be the good.  I am very thankful for that.  

I think I will go back now........


cat pics soon G+ 

Tuesday, 6 January 2015

Deep Freeze

This morning I am forcing myself to write.  It's time I did.  Way too much inside, way too much weight.  

My visit with the Doctor in early December had positive results on one front.  The growth on my left lung has not changed in any way.  It will be two years unchanged in late April I think, should it stay the same.  There seems to be no reason to think that it will change. The doctor thinks it is a scar.  The doctors at the Jewish had not heard from the doctors at Notre Dame so whether or not my heart is now up to transplant standards remains unknown.  I have not called for the results.  The doctor and nurse emphasized remaining comfortable, stress free and as active as possible.  The prognosis is grim indeed.  I have gone far further than most ever could.  I have a little left still.  I still have not gotten my flu shot. Did not want to bother the guys who take me to the hospitals, take a taxi or beg someone. I have to figure it out myself and I just can't anymore. 

Nicole made Christmas season awesome. I was so ready, I let myself go and enjoyed it immensely. It felt like my first and best Christmas ever. A couple of weeks of childhood memories was lovely. Peter joined us for Christmas dinner. Christmas season with just the two of us at home felt fine. It was not what I would have chose but there is nothing I can do about anything anymore. Breathe. We had a lovely visit from a little girl and her parents. We are still beaming from her loveliness and your thoughtfulness. 

I dont think I will have a transplant. Too much lined up against me. The level of support that it would require is not there. We can't manage now. How could we possibly manage then? I am being realistic when I think like this. I hurt her later by hanging on now. This is my brain at work. Don't take it personal anyone. There is no agenda at work here. This is a product of where we are at this time. This is going to be a wretched couple of months.  

Hopefully writing it out will help. I feel like I cant write. That more shit will ensue. Coward. That I don't like. How much more alone could I get? Rather funny and pathetic if you think about it cause I am and have been operating with an entirely pure heart. Really.

I don't spend my time drowning in thoughts like these. I am blessed to be able to transcend to a happy place most all of the time. This is what I am supposed to do, what I have to do in order to be alive tomorrow. I am quite successful at it. I love myself now. I love everything. I love you. I survive

G+ peeps: You make my heart glow