Quote:
Originally Posted by C3C7NIC
Pete,
I will not begin to understand your current state of mind or how your physical limitations affect your daily life.
What I can tell you, having seen it too many times to count in my line of work, is that none of us know our expiration dates. I have seen people that had been given a month to live, out live their children or spouse. YES, some days are filled with misery and pain, some of my most amazing patients have taught me, there is always an opportunity to find beauty, even in the shittiest of scenarios.
The Endeavor Games https://www.endeavorgames.com/ are held in my town every April, except this year for obvious reasons. My 1st year to volunteer on the medical staff, I was excited to help the athletes. However, I was who was brought to tears through the positive attitudes of those who had very little to be happy about, and without knowing I needed it, I was HELPED to have my perspective on life changed, forever.
I'll never forget the athlete(s) who had only one limb. They competed in track and watching them, not only exist, but to push through all the pain and odds against them, gave me an inspiration that was overwhelming.
Knowing your conditions, I understand that depression is part of the chemical shift of dopamine, serotonin and norepinephrine that occurs in your body, which is out of your control. So many things with chronic illness are out of our control and that is a "hard pill to swallow". I hope that you are able to find more things than not to be thankful and happy for. For one, you have a loving spouse, and that is something many with severe illness do NOT have. Watching people go through terrible illness alone is a truly heartbreaking thing.
I do not know you, your story, or the background on what is happening, but from one human to another, keep on keeping on and take the time to fight to see the rays of light that are present, even in the darkest of days. We all are dying, every last one of us is 1 day closer to dying, but what we do with each day we are blessed with is what truly matters. That IS something we have control over.  |
I go to the same cancer center every two weeks for either fluids or for chemo. For 14 years and counting. It has given me incredible perspective. There are so many people who can’t even function if they wanted to. I can function quite well most days. (I’ve never missed a show) but granted, I often show up to work in bad shape and this persistence has put me in the hospital more than once (but AFTER the show!)
Then there are the people who suddenly don’t show up to the cancer center.
The lady with stage four pancreatic cancer who became a good friend because she had an incredible attitude. I started helping her at home even holding her hair out of the way as she puked her guts out. (RIP Elizabeth
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You usually don’t go to a place like that for years on end. I see the entire population of the place change. You don’t know who made it out because they beat the cancer or if they didn’t. What you do know is they are there right now and need to be listened to and shown somebody cares.
I usually walk around dragging my IV pump to try to talk to anyone who wants to talk, until I go down (****ing IV benedryl). It’s become a thing. I also bring snacks and little juice cans. I’ve not once had anyone offer to come sit with me. I drive myself there and I drive back.
I’d like to bring Shadow but they won’t allow it. People would go nuts for him.
You nailed the chemistry. My blood disease complicates Crohns. So I’m much sicker than a typical Crohns patient because I can’t get enough 02 (my body decided at some point that red blood cells were the enemy. And my terminal illium and my muscles, and my joints, and my optic nerves.)
I don’t know my exact expiration date but there are lots of stats. With treatment and barring a crazy infection (even minor infections turn into life threatening events - one time half my face swelled up ala elephant man from an infection in my skin. Put me in the ICU for three days. Most people when they get cellulitis they just take antibiotics.) I should live almost as long as everyone else.
The difference that lowers the mortality age is the number of surgeries. Most Crohns patients go through about ten years (starting around age 50) of many surgeries. In the hospital they get infections and die. If they live through that time, they usually do very well with reduced symptoms.
I’m in that time. 4 surgeries in less than two years. I never know when I’m going to wake up in the ER and find out they are going to start cutting. Last time it was a six inch section of my gut they cut out and I was there for seven days.
I’m not afraid of dying. I’ve heard the old saw “we all are dying” - let me ask that you avoid that phrase. It minimizes what people are going through. Of course we are all going to die. Maybe a bus will hit you tomorrow. Maybe your heart will give out.
But most people won’t experience the protracted brutality of this disease leading to death. It’s ugly. Treatment (currently $250k a year) can stave it off but nobody scapes it. Hell, a side effect of the drugs is lymphoma! WTF.
Death isn’t what sucks. What sucks is callous people, stupid comments constantly (Aw c’mon we are all tired, come out with us!” Or “but you look normal!”
What sucks is not being able to do what I want to do. When I have a show my preparation starts two days before. I have to limit what I eat, get hydrated as much as I can, sleep most of the day of the show, don’t eat anything the day of and then I need about two days after to recover.
I’ll never see France or Italy or the pyramids. I don’t get vacations. I can’t travel anywhere anymore because I have to have access to treatment. I used to go into some rough places to deliver medical aid with military, no more. I can’t build a new deck (I’d really like to!)
100% of the energy I have goes to work. (Self employed consultant) and getting work. After work there is nothing left for family, hobbies, even practicing (I don’t practice anyway so....but I tried vocal lessons. Don’t have the energy to do the exercises every day.
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So if things get nuts, put me on the front lines. With enough amphetamines I can do anything.
