Get off my lawn

I turned my blog back on this morning.  Good for me.  

A ground rule: If you care to comment it has to be somewhat positive or encouraging or please don't bother I will only delete it and block you

This is not a place for dialogue, its my monologue  Please leave if you have issues with that and refrain from bothering me about it. Your views have NO place in my blog. 

We had over 20 calls yesterday that went to voicemail leaving full messages of silence.  This has been going on since last June.  We are going to cut the phone off.  

Had to make choices this week about what to pay and what not to pay.  Cable internet turn.  Probably will not have internet for a week or three.  No problem.  I will be back when I can.  

I could not possibly be more discouraged about shit.  

love

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.  

Love.

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........

love  

cat pics soon G+ 

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   

Christmas promised

Trying to get a breath is my whole life now.  Trying to stay calm enough, unanxious enough to keep from collapsing completely.  A thought can start a chain reaction of physical events that rapidly lead to panic, hyperventilation and other delightful things. So far so good.  Bad thing is though that any movement now leaves me drained and on the edge of collapse.  Lifting a hand without thinking and planning will do it now.  I do what I can when I can. 

I am close to stopped.  I really can't stop.

My house is a feels a lot bigger and impossible to maintain properly now.  

We see 3 people regularly in the month.   They don't forget us.  Our angels.

Nicole labours too hard and nobody but I cares.  I can't do anything to help her.  She smiles, supports me. loves me.  Every day she takes on more as I fade away.  I love her so much.  Everyday she is more and more alone as I need time to answer a question, to recover breath to speak.   

We are broke.  Fairly sure I will die before we loose the house.  We keep the mortgage current, so that is one fine bet!  The house is for Nicole.  It is enough to give her a little nest egg for her next life. Worrying about a few hundred bucks every month sucks and there are times it pisses me off and times it disappoints me.  

I don't answer the phone anymore.  I check voice mail once in a while.  

I had a CT scan two weeks ago.  I see Dr A at the Jewish on Dec 9. I may get the results from last summers echocardio done by the transplant docs and the CT results.  Two possible transplant showstoppers.  I don't feel very positive about my chances anymore.  I suspect a lot of what I am experiencing comes from a failing heart.  The symptoms are similar in a lot of ways.  I have sharp pains in the chest now when I push hard.  

I am happy.  Love is all, it is not just words.  I have endless love from Nicole.  We do not cry, mourn nor spend time being sad.  We laugh a lot, we play with our kitties and we ignore the brutal reality of my disease and the current state of our lives.   

I still like to say I make dinner every day but there are days I simply cannot.  There are days now that |I cant dress myself, where I spend the day on my recliner lungs refusing to work enough to let me push.  

I will keep pushing.  I will keep loving.  I will keep living as long as I can fight this disease.  I had to tell Nicole that the time where I can't fight, can't move is getting closer.  She will let me go when we get there.  I promised her I would be here for Christmas and I suspect I will be.  Right now I hope she doesn't ask for a renewal of the promise.  

I spend days inside my mind.  Playing games.  Thinking.  Being free of this horrible disease.  Not dwelling on the obvious.  Not at all!  For that I am thankful.  

Wish me luck.   Love.

Postcard from the edge

I gained a little weight finally, enough to be where I need to be. There are no signs of any pulmonary infections.  I am not coughing as much and I don't get into trouble very often.  I am able to manage 30 mins on the treadmill at 2 mph, most of the time without stopping for a rest.  I walked to the stores with Nicole on Sunday and even walked home up the hill.  It was nice but very hard. I guess I am about as on track as I could be.  Still, it gets harder every day.  More SOB faster, even at rest.  Thoughts and emotions count too.  The physical response is rather startling.  Just thinking stressful stuff can do it.  Anything and everything does it, constantly.  It is very boring, really.

Mentally I am not so great.  In terms of being sick and all that icky stuff I am ok still.  We are managing fine with that.  Watching Nicole have to do things because we don't get help is hard and discouraging.  Not having things like a little railing on the steps after a couple of years of asking, not having the money to fix it. Somebody is going to get hurt and there is nothing I can do about it.  

Everything financial is fucked up.  I need counsel but am afraid to go talk to the bank for obvious reasons.  We probably are ok on a balance sheet but nothing works currently.  I feel entirely incapable of dealing with this stuff, it makes me sick.  

Every damn word I write today I have to think of the consequences, of other people's feelings.  This is bloody absurd!  Why must I do this to myself?  I can write about this but I can't write about that. I can tell you about this pain but not that one.  

I have not told the doc about the daily prednisone, I just do it.  I need to call a bunch of people today to keep things working.  I probably wont.   I will exercise.  I will be happy.  I will live.  

Just write, Russell.  

October my my time races on

It has been a month since I posted so its time.  I have been feeling reasonably ok.  I am short of breath even at rest now, but, my rehab skills are still working reasonably well.  I have had no setbacks, no new infections.  I take 15 mg of prednisone daily and that is keeping both my appetite and my energy up.  I eat more than I have ever eaten in my life.  I cant gain weight though.  At least I am maintaining around 110.  Not quite good enough for transplant but within ten pounds.  I could still force myself to get protein supplements going, but I will hold off a bit.  

Emotionally I am ok.  When I focus on here and now all is well. When I dwell on things I can't control, less so.  

I am at peace with the world.  No ghosts.  No hauntings.  My course is a true one.

Nicole gets stronger, more awesome by the day.  I gave her full power of attorney two weeks ago.  

Lunch today with the boys.  

I miss G+.  I miss you peeps.  I will come out of my cave now.

I go to these places in my mind and stay awhile.

I used to worry and fret about the effects of the of my slightest actions.  I dont anymore. 

Now is for me.

love