There comes a point in your life with chronic illness where you feel like you are going no where. There are opinions. LOTS of opinions but no where to go. No way to move forward. I’m not a huge chess player but I can’t help but think of this point in my life as a stalemate.
Definion of Stalemate (per Merriam Webster):
: a contest, dispute, competition, etc., in which neither side can gain an advantage or win
: a situation in chess in which a player cannot successfully move any of the pieces and neither player can win
This is honestly where I feel like I am in my life. I have a team of doctors (neurologist, rheumatologist, gynecologist, gastroenterologist, pain management specialist, and general surgeon) and at this point it feels like they are all just pointing fingers at who should be in charge of what. Honestly, it feels like they are just pointing fingers at whose fault it is. The one thing they all agree on is that I am in need of surgery but I am considered too high risk to go in preemptively so they just want to wait until something goes wrong (another total bowel obstruction is the most likely).
There is nothing worse than waiting.
I am currently waiting for our Disney vacation (123 days to go!) which is gut wrenching because I love Disney so much but at least I know at the end of 123 days, I will be on a plane headed south to visit The Mouse and have a week full of fun and family.
When you are waiting for something to go wrong, there is nothing exciting about that. My first total bowel obstruction experience was scary enough without knowing that it was coming and of course, the life changing experience I had in February, I never want to go through again. So right now, I have no idea what to expect.
We are at a stalemate. I feel like there is no win in this situation.
We have known for sometime that adhesions have been affecting my bowel but recently, I have been having a lot of issues with my bladder. The pain can take my breath away. I did see my PCP and I do not have a bladder infection or UTI so those are two causes crossed off this list. Two of concerns at the top of my list are bladder prolapse (which is common post-hysterectomy and I have a family history) or the adhesions have spread and now my bladder is involved. I’m not sure which one would be better.
I see my endo doctor June 8th and part of me wants to get on my knees and beg that she does surgery. Risks be darned but I need my life back. I know I will always have a life with chronic illness but there needs to also be a quality of life.
I NEED A LIFE.
MY LIFE.
Am I absolutely crazy to beg for a surgery? I know the risks. There are a lot of them. I am not going to play that down. But at what point do the possible benefits from surgery outweigh the risks?
The last general surgery I saw said that the chances of anyone ever being able to do anything laparoscopically are slime because of scar tissue. She said that by just by feeling my scar from my vertical obstruction incision (which honestly feels like a rope) that any adhesions would likely be dense. When I have my gallbladder removed last summer, they could not even use my belly button for the laparoscope because it has been used too many times. My poor belly button.
Maybe we’ll get lucky. Miracles happen right?
All I know is that something has to give. Something has to change. We know there is a problem and I’m tired of feeling like a ticking time bomb. I’m tired of constantly being at a stalemate. Its time to make a move.
Have you ever felt like you were at a stalemate? Who made the first move?
OH I feel your pain. I will pray for you for strength and courage. I understand the struggle of fearful doctors. I have had my fair share. I am a high risk surgery too. Recently I have a doctor who likes to think outside the box of general medical advice. I”m thankful. I pray you find someone who does that for you.
Thank you so much for your prayers. They mean the world to me.
Yep. Right there with you. My docs don’t think surgery will help, but nothing else is. There are times I think the cruelest part of Endo is that it is unrelenting but not terminal.
You said it perfectly. Sometimes I’d rather it be terminal. Is that an awful thing to say or even think? I think it would be taken more seriously. I know there are risks involved. Currently in my case, some pretty major ones but at this point, I accept the risks because I am in absolute agony. Something has got to give. No one should have to live this way.
I have been at the point where, despite saying no one ever wants surgery, I wanted surgery. It’s a hard place. Sending gentle hugs and much hope