Why this blog?

Welcome! Thank you for visiting my blog!

This is my medical and recreational blogsite. Some of the entries on this blog are honest and quite vulnerable, as I wrote them at my lowest point. I try to keep a positive outlook on life, because no one wants to hang out with a downer, including me. Writing these entries has allowed me to see the world through a beneficial filter that allows me to appreciate every moment I have been able to experience in my life, even the difficult ones.

My husband Matthew and I LIVE when we can. I mean we suck the juice out of life, and we aren't ashamed of that outlook. It makes the bad times ok somehow because we took advantage when we were able. The pictures on this blog are part of that. I take pretty pictures of my sick body to boost my self esteem when I am having a difficult time seeing myself as a woman instead of a sick person. It is how I cope with my illness, and no one gets to judge how you survive your difficulties. So live on, and feed your souls.

Watch our story here:

https://www.youtube.com/watch?v=mG_mrDJ10LM&feature=youtu.be


~ Tonia

I have decided to relaunch my Facebook Page, The Beauty in Illness. Along with the help of two other rare patient advocates, we are hoping to include artistic stories of struggle and perseverence through creative ways. Please check us out and let us know if you would like to contribute!




Hospital Me THEN (2012)

Hospital Me THEN (2012)
Dance like no one is watching!

Hospital me NOW (2015)

Hospital me NOW (2015)
Dance like EVERYONE'S watching

Post Transplant-1 Year (March 2014)

Post Transplant-1 Year (March 2014)
Mi Amor Studio

Pre Dialysis Pinup Shoot (2012)

Pre Dialysis Pinup Shoot (2012)
Dynamite Dames

Mid Dialysis Boudoir (March 2013)

Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)

Non-Pinup Me Now (2015)

Non-Pinup Me Now (2015)
This girl has four kidneys

Saturday, March 16, 2013

The Stint

I have been avoiding writing about this because it causes such anxiety for me that I would rather not talk about it.  Anxiety is a funny thing.  What gives a person anxiety doesn't have to make sense at all to others.  But it could be connected to something in your past that somehow got associated with a traumatic event in your head.  This is something that I wish doctors and hospitals would be more careful to notice.

On the 26th, I have a post transplant procedure planned that couldn't stress me out more.  The line that leads from my kidney to my bladder has a tube in it that was placed during the surgery.  It is called a stint.  It is holding up the tube so that it stays open while it is healing.  I had one for my last transplant as well.  After the transplant, this stint is removed sometime in the coming weeks.  During my last transplant, it was removed on day 8 and I was released that day.  I was put under and during that surgery, all my other drains and tubes were removed at the same time.  I requested Virginia Transplant to remove the drains while I was under at that time.  I know they thought me a big baby, but I had those drains removed when I had my breast reduction and it really hurts!   Why feel pain when it is so easy to do it while I am under?

Well, I am under the philosophy that if I am under anesthesia, I don't really care what has to be done to me.  I am not there technically and I won't have emotional trauma if I don't know what is happening. 

Let me specify what has to be done to remove this stint.  They have to remove it through your bladder.  Yes, through your pee-hole.  Just the thought of that is enough to send me into a mild panic attack.  But again, if I am under I am not there to experience the trauma, right?

Well I was informed before the transplant that I will be awake for this procedure.  Not only awake, but completely not under the influence of any sedatives or locals or anything.  Ok, the panic sets in.  I expressed my fears to my surgeon and he said, "It's funny, I have to consul people more about the stint removal than I do the transplant."  Well, maybe that should tell you something!  Have you ever had a stint removed from your body through your pee-hole?  I bet you wouldn't like it much either. 

So, like I do I have taken the opportunity to tell as many people as possible about my anxiety.  The six months of therapy I had to undergo after some of my past hospital visits have taught me that there are some things I can breathe through, but other things are just going to trigger a response.  This is one of them.  I don't care if I sounds silly.  Yes, you may even be thinking, "well she's been through so much at this point, how could this be any worse?"  And you are probably right.  But I want you to put yourself in my shoes.  It isn't that much work to sedate a person.  It is one, maybe two injections of some kind of drug that makes you not remember what just happened to you.  They do it for colonoscopies and endoscopies.  This seems just as intrusive as those to me.  It shouldn't be the most absurd thing to ask for.

I had a kidney biopsy once and was given nothing because it affected creatinine.  I was handed a valium on the operating table two minutes before they did it.  Not helpful.  It was one of the most painful things I have ever experienced.  I don't cry for pain very often.  But this was awful.  And it took an hour of tears streaming down my face and screaming for a nurse to give me anything for the pain.  I don't trust doctors when they say it doesn't hurt much.  They don't know, they haven't been on the other end.  And PAIN IS RELATIVE.  Just like anxiety. 

This is a soapbox of mine, yes.  And as you can see I am up at five in the morning typing about it losing sleep already.  All I can do is mention  it to as many people as I can at Iowa until they are sick of hearing it from me.  I don't care, when it comes to panic attacks so easily avoided, I will fight until I am forced down on that table with my legs in stirrups while a team of surgeons are looking at my genitals with whatever they insert into my urethra to pull that thing out. 

Insert willies here.

2 comments:

  1. Barbarians. Wouldn't hurt a damn thing to sedate you. Slap them all!

    ReplyDelete
  2. I call Bullshit. Bullshit bullshit. You should be permitted sedative.

    ReplyDelete