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06.25.17 (three kidneys in)

As always, too much too too much to catch up on or convey.  The incompleteness of the story is almost enough to make me give up telling it.  I push through and write because I feel compelled to.  I feel relief when I let a little bit off.

It may be that these fractured entries will one day add up to something which I cannot presently appreciate or anticipate.  I hope so.

The transplant, the drugs, the cutting, the eradication of my immune system, the anesthetic, the fluids the lines and catheters, the stint,  and the closeness of other people-their hands and fingers and thoughts so deep in my body. . . Beautifully and powerfully counter-balanced by a woman who freely gave me her organ, and her whole body and soul and who she is.  And god, and family and thoughts prayers texts gifts visits so much support coming out of the grain.  The violence to my body a non-issue because I am overwhelmed with gratitude and this experience of grace.

Why the universe has granted me this, is  beyond me.  It is my part to accept it with my whole heart. 

And this.  The frequent wishing that I was not alone.  The entitlement that I feel, that my lover and husband be here with me.   The resentment that results despite its uselessness.  The distance I feel even though I know that he is doing all he can to be here for me. 

05.19.17 I want to be a person with a strong body.

I want to be the woman who came out of years of addiction, a tracheostomy, kidney failure, and everything else that has come with years and years of ill health–and got her muscle back.

I want a strong body.  I want muscles in my thighs and shoulders again.  I want to feel strong, and feel proud of my determination.   I want to develop self-discipline in an area that is intimidating at best.  I want to feel strong in my body,  confident that I can put up a good fight if necessary. 

I had started with about 6 weeks of physical therapy which did little to really build muscle but did give me some understanding of what my body can do, and helped me set more realistic goals for myself.

I then asked my mom and dad to buy a 3 month membership at the community rec center.  I did well going 4-5 times a week until I became sick for almost two weeks and was barely making it to dialysis, and struggling to get calories in.  

My first day back to the gym was harder than usual but I showed up.   I should say I feel good every time when I leave.  I think there’s some embarrassment about my severe lack of muscle but I still feel good walking back to my car and through the day I feel more energu, more motivated.   But I got in a car accident leaving the rec center, my fault, took my bumper off, my insurance covered him.

The end result is I haven’t gone back for two weeks.  I will shake it off, and get going again.

I am not a lazy person, or a weak person, or a sickly person.  I am out of practice but all I have is today to do the work, get in practice, and become strong again.  Stronger than ever.

5.08.2017

Six and a half months ago I was drowning under the end stage kidney disease.  Postponing the fistula surgery because I was fearful of the vein modification  process, and wary of what dialysis would do to my head, an IV drug user in recovery. 

So I put it off for months.  Got sicker and sicker until I was waking up each morning vomiting up amd empty stomach unail mid afternoon, weighed down by edema in my entire body, surviving on nutrition shakes and protein powder.

It got so bad my doctor finally told me that if I did not begin dialysis I would be too I’ll to receive a kidney transplant, even if one came available for me.

So I went to the hospital and they placed a catheter in my artery in my neck with an in tube that is color-coded blue, and an out tube color-coded red.  I was dialized through that port for about 6 weeks while I underwent the vein-elevation surgery to raise the fistula that had been created months prior to the surface of my arm.

The fistula, by the way, is ugly.  I have two surgical scars one 10 inches long front my armpit to my elbow.  The other scar cone off at a 90 degree angle on the inside of my elbow.  The scars I can live with, even with pride.  The fistula is hard for me to look at, hard to accept. 

Once I started dialysis they removed 30 pounds of water weight.  One fifth of my total body weight.  My appetite improved immensely and my energy level improved.   The strain on my body image improved as my face and body returned to a shape that I recognized. 

I am writing all of this as a build up to Janice.  But now it has taken too many words, and Janice deserves my best words.

She will have to wait until another day.

4.24.17  (happy birthdays ash and maya.)

Last Friday I saw Dennis.  And he cared to ask what my state of mind was, how I am.  He is often so kind and conscious of me he cares more than anyone I have ever known, or at least he shows it in a way that is meaningful to my mind.  I am so self centered at times.  . . I want to return the treatment to him.  I hope that I do.

I have been deep in thoughts about living and my life ever since Janice was approved to give me her kidney.   Thoughts about the options for my future.   Thoughts about the damage I have done to myself and the things that I have survived,  and why.  And whether or not I even want this kidney and an extension of my life.   A kidney is likely to be a big improvement on my current health.  But I am still type one diabetic,  hiv positive, bipolar, addicted.  . . A kidney is not a miracle cure.  A kidney could be a whole new set of problems.   

That a woman I barely know has taken it upon herself to give me her kidney, is a miracle.   The fact that her higher power Jesus has (according to her) directed her to follow through with this and the fact that she did in fact follow through with no strings attached.  . . That is something beyond me by far.  I have no special feeling for Jesus, she is welcome to what gives her meaning.  But why does her god feel interest in me?  I don’t feel interest in him.  I feel connected and rooted in my own spiritual choices. 

So I asked my husband what is the meaning of life?   What is the point?   And he looked me in the eye and he told me it is for fulfillment of ourselves whether for good or ill.  To satisfy our own potential.   For him, he said, it is to love me.

And I wander about this planet, flawed, weak, sickly, proud, selfish, loving but always short of the mark.  And yet I am alive and granted life on so many levels over and over again.  And I am loved far beyond my merits.  

And I do not work.  And the taxpayers cover my medical and my living expenses.   And Janice offers me a necessary organ, which I cannot provide for myself.  And my family is loyal and loving and supportive in every way they are able.

And I have so much brain damage that I can scarcely remember my own life.  And if one cannot recall their own experiences,  is their still meaning in them?

And yet here I am alive against the odds.  Having kissed my own mortality more times than I can say.  Resilient and here and being offered still more and not sure why.

I am the most fortunate person I know.  I am unremarkable and yet somehow the universe gives me everything I need and more.  It is extremely confusing.  I have no idea why I am alive and supported.

I will sure accept it though.  I will accept the help not knowing why.

04.20.17 (on the upcoming lif-and-style-of-death medical decisions)

Not under any kind of impression, or knowing.  Today, in a general drift.

Today on a makeshift raft dry in the sun adrift crystal water a few degrees too cold for swimming, just cold enough to chill the skin on the underside, and encourage me to stretch flat lizarding for the sun.

The water and the sun my reality by choice. Waiting outside the door of this raft:  health, mortality, future, commitment, disease, transplant, uncertainty, fear, fatigue, isolation.

I shake my head a few times to get back on track.  Board up that stupid door.  Return to the raft and the spray and the infinity of the sun and clear cool water.  

4.12.2017

I’m at my sister’s house in Heber to ease concerns that others are expressing about my latest health “crisis”.  I don’t know if I’m in denial or just accoustemed to being in jeopardy.   Or what.  My blood pressure has been elevated, swinging between 183-140 on top and 125-98 on bottom. My pulse is fast.  It’s 108 now.  It’s been going on for a few days at least.  I don’t have a lot of faith in things improving.   I don’t think that my medications can even be increased.  Tonight I  just want to hide from it all, dialysis, anti-retro-viral treatments, injections, pills, appointments, energy one hour, fatigue the next hour. . .

It’s a roller-coaster physically but the real problem is that mentally, this week, I am feeling it.  

I would like to curl up and just disappear.  I can feel the bottomless ness beneath my feet, I feel the distance between my brain and everyone elses, I feel the deep, nodding shame of myself.  And it’s close, very close.

And I’ve been through it so many times that I also know that tomorrow likely it will have shifted.  So don’t do anything drastic.  Don’t listen to my self.  Hunker down and survive and creep out later.

So, this morning Janice my would-be kidney donor called me to say that we are compatible.   The tests are back and we are compatible.   This woman is a whole story in herself, another day I will try to record how she came to me, how her god Jesus told her to give me her kidney and how for months now she has been pursuing this prompt on my behalf.  And we are compatible and I feel, what?  Guarded.  Fearful.  Conflicted.

I should be jumping for joy right now.  I haven’t even told my family. 

I don’t know if I believe that there is a future for me.  I don’t know what to do with it. 

3.20.2017

Even after all this, nothing really changes. There is only today for me, only really this moment of time for me to exist in or attempt to manipulate. Events happen, or don’t. I get lost and fearful if i go anywhere in the future in my head. And being lost or confused inevitably leads to anger which leads to wall-building and relationship-sabotage which then results in me being alone in the world and this woman is much happier and much kinder when i am not in a bubble.
Last night I heard from the wife of another man in our circle who pushed the final button on his hope for a life on the Outside. I had been observing and fearing that he was getting high again for a few months. seeing the writing on the FB wall, as it were, but hoping it was not so, that the coffin was not yet in the ground.
She told me that she finally had proof and confronted him and he put her in the hospital with broken ribs. Hes been on the streets for three weeks now. Its only a matter of time, and he just gave 17 years of his life to the Feds. She knew him, wrote him, fell in love with him, married him. And he may well have loved her back. But then he got sucked right back into that game that leads to misery and hate, and has no place for love.
I know how it feels to lose my man to a needle, to the game, to the whole thing. I have no comfort to offer this woman. I see in her only my own very possible future. Meth is a mother fucker. I may say that I know what I am dealing with this time, which is not true, not at all.
What I know, based on hard won experience with loss and murder and overdoses and deceit is that I KNOW NOTHING. As long as I keep that solid in the front of my brain I might stand a chance at defending myself should that dark beast come lurking again, and try to get into my arm or my home or my love.
All I know is that on that road I can not trust any one. Not my blood, not family, not my self.
Time goes on and I watch brothers and friends try to build for themselves a life that makes sense on the outside and they fail. What in this world makes me think that I am the special one? That Dennis and I have such a big love that we can outmaneuver the addiction that informs us, that informs all of life around us?
I despair of ever feeling safe or comfortable again. Not clean, in a society that makes no sense to me. and God knows, not getting high.

3.15.17

Happy birthday Nana.  You are 97 years old today.   I have only had the pleasure of growing close to you in the last three years.  You may feel hobbled by dementia but you have changed my life.  Because of you I have a roof, I am able to live near the prison and see my husband,  I continue to keep on keeping on through kidney failure, etc.  You are a shining example of determination and productivity and grace.  I have grown to love you.

And p.s. world.  It’s NOT my short term memory that is in the 7th percentile.   I’ve been reading and it’s my Declaritive memory that is smoked.  So it might take a year for me to learn your name but I love you all the same.

3.13.17

I am an intelligent girl.  I once flew through classes and tests with ease.  When an assignment felt challenging it felt great.

When I walked for graduation at the University of Utah,  four of my professors stood to meet me, two came down the steps to shake my hand or hug me.  Looking back, I am proud of that.  

I have been a substance abuser since 1993.  Or 94.  I used to fill my nalgene bottle with a mix of tequila and juice and take it to class with me.  In 2002 I put myself in a coma for several daya, the first of multiple brain-injuring suicide attempts.  I used hard drugs, heavily, intravenously from 2004-20015.  I have  removed the sharp memory and the cogbitive edge that took me through academia with so much ease. I am brain damaged, no doubt about it.

A few years ago I did a two day evaluation that indicated me in the bottom 7% when it comes to short term and working memory.  Iol.  It explains so much. 

Yet, the brain that I have has adapted.  The thinking I honed in school for 23 years lends itself to certain mental skills I have injured away.  🙂  what are my strengths today?  

I believe that I have left certain socially-familiar kinds of reasoning behind.  I recognize patterns.  In nature, in human behavior in politics in faces.  And I’m able to deduce or instinctally know what they are likely to mean.

It doesn’t matter if that sounds crazy I feEl satisfied that on some level it’s true.  It explains some things about how I function and why it confuses others. 

Dennis in my life.  He unlocked this for me.  Makes space for it.   He is too complex, and it is not my goal to describe that human.   Nor could i.

He is a major player in my life outside.

Lesser of Two Evils 3.13.17

I hate to write one handed but dialysis demands it.  

I’ve got problems today that are complex.  Type one diabetes, background.  Addiction to crystal meth, gratefully, background.   HIV which contributes to catching shingles (apparently it IS possible ) from my grandmother, who I have been  caring for bathing and whatnot this last two weeks.   Shingles in the mouth and airway because that’s my luck.  Valtrex 3 grams per day to fight the shingles to keep HIV undetectable to ensure readiness for kidney transplant which is is the works.  Get it?  Do you start to understand why I avoid talking about my health?   It’s too much.  And people feel sorry for me.  And I despise being felt sorry for. And I don’t think life sucks.  My life just turns out to be pretty unusual.   Complex.

So the valtrex makes me psycotic.  I see the world moving, the sun is insanely bright, I feel paranoia and pressure drawing from my head like ropes on a ship that is tied to a dock.  The valtrex treats the shingles in my airway.

The shingles is causing narrowing in my airway which, combined with the trach scarring is making it hard to breathe, giving me some strider.  (The tracheostomy a story for another day ) 

So I take the valtrex induced psycosis, because the prospect of a second intubation is unacceptable.   The first lead to a tracheostomy and a feeding tube.   

I would rather hide under a rock and take the pills.

My mom is here to help me through.  I hate that I need to be helped through.