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:


~ 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

Tuesday, March 26, 2013

Facing Fears

So about the stint removal: 

And this is why I love the University of Iowa so much:

They scheduled me with Urology.  I was groggy when we got there because I had taken two muscle relaxers the night before along with two Xanax to get to sleep.  I did this on purpose because I knew they would linger and help calm me for the morning.  We get into the room with the nurse and she explains to me in full detail what is about to happen.  Knowing details really helps me.  I don't like surprises.  She even shows me the size of the tube inside me so I know how big it is.  She told me they would apply lidocane (sp?) to my, um, opening to numb it a little.  Then they go in with a camera scope with a grabby contraption on the end to pull the tube out.  It just takes about 15 to 30 seconds to find the tube and once they do it is literally seconds to pull it out.

Awesome.  Now that sounded way easier than I was imagining.  But I still was interested in calming my anxiety a bit.  The doctor, who was a woman, came in to discuss the possibilities of sedation.  She never treated me like a wus or made me feel stupid.  She simply told me my three options: 1) I take a valium and wait until it kicks in to calm me.  2) They put an IV in my arm and give me a dose of a drug that makes you super high (tempting). 3) They wait until tomorrow and get an anesthesiologist to put me completely under for the procedure.

I didn't want to stay another day, and after they explained it, it didn't really sound as bad as my first impression was.  Remember it was originally explained by a surgeon.  Now I love surgeons, but they are a little desensitized to the "willies".  As they Should be!  So I picked option 1.  Give me a valium.

My only experience with valium was one time before a kidney biopsy I was given one literally within three minutes before they stuck the needle into my abdomen.  It hurt like hell, I wasn't calm, and I hated every one of them while I was on that table.  It takes a little while to kick in, Derps! 

I took the valium along with two painkillers and a Xanax.  Now, you may call this self medicating.  But as I mentioned in earlier posts, pain medicine doesn't seem to work on me anymore.  Neither does Xanax alone.  I have a huge tolerance.  I would wager that I could pill most of you under the table, even at 115 pounds (ok, 123 pounds post transplant).  Then they started getting me into the room for the procedure.  They said it would take some time to set up and that would allow the valium to take effect.  Swell.

My mom was able to come in with me, which helped.  The room was a huge operating table with stirrups.  There were two female nurses in there prepping me.  They were really nice.  First they gave me warm blankets so my upper body wasn't cold.  Yesssss, I love the warm blankets.  They put the numbing goo on me first.  This felt nothing but ick.  Cold finger in and around your pee-hole.  Very uncomfortable, but not painful.  Then they wiped me with iodine (actually I can't remember if they did this first, maybe the pills did kick in), and then they rinsed me with cold water.  Surprise!  Cold water on your Hoo Hoo!  Ok..

So then the doctor comes in and she shows me the scope.  It is about the width of a pencil, maybe slightly larger, with a light on the end that is the camera.  Those screens next to me in the above picture are actually about to show me the inside of my bladder, they tell me.  Ok.  So I brace myself.  Except when you brace yourself you clench the hole they need to get into.  The secret?  Wiggle your toes.  Apparently your can't wiggle your toes and clench your hole at the same time.  As a movement teacher, this fascinated me, but as a patient I was distracted.  I swore to look back on this later.

Then they put the scope in and Mom and I looked at the screen.  It was fuzzy, but I saw the tube pretty quickly.  I felt them pull it out and they said, "All done!  Want to see it?"  I said "YES!!"  and the nurse held it up.  She then said, "Do you want to take it with you?" 
What do you think I said?

So this is the stint.  It is really bendy.  The curls were each in my bladder and my kidney so that it is easier to grab to remove.  I have yet another piece of my gore to add to my collection.
So that was it.  Was I high?  Thanks to the extra feel-goods I took, yes a little.  I don't think the valium would have calmed me enough personally.  I walked through the hospital and ate breakfast right after.  I know my body.  But the women in urology were understanding, patient, and really cool about everything.  I felt like they listened to me without judgment and offered options for me to choose.  I was in control of how this was going to go.  I really appreciated that.
I was not left traumatized and I can honestly say being awake and aware probably helped me face a fear rather than catering to it.  I love and hate facing fears.  It is the reason I request IV Benadryl whenever I can.  I need to face that overdose fear as often as I get the opportunity or else the fear and anger will take over my life.  Fear is personal, and moving past it can only help.  I don't expect people to understand my fears, but I am no longer afraid to set boundaries when I need to set them. 
In all honesty, this procedure scared me more than the transplant.  It won't be the last time I get scared like that I know.  I have a long life of medical torture ahead of me.  Maybe not in the near future, but eventually.  For now I will enjoy Matthew's ultra filtering kidney and hope that I can retain this appreciation for the sweeter things as long as I can.      

1 comment:

  1. i think that the more often you feel in control of a procedure happening to you through knowledge of the process the better your body responds...so many people are afraid to know exactly what is going to happen to them and they close this pathway off....no blame here, i still can't watch as i get a shot!