4th Anniversary

So today is my anniversary! Not marriage or work. It is the anniversary of my mom passing away in 2012 and is also my son in laws birthday. For me it is the anniversary of my body taking on a new identity. A day that forever changed my physical and mental aspects. August 1, 2016 was the day of my TPIAT surgery. The Total Pancreatectomy with Islet Autotransplantation.
Because of Acute Pancreatitis that turned into Chronic Pancreatitis, it was discovered I had a mutated gene and Hereditary Pancreatitis. The worst part of this disease is the absolute worst pain I’ve ever had in my life. I spent many days curled up in a ball in agony. Eating was the enemy. No medication would take away the pain completely and only for a short time. With few options to treat or cure this, I decided on and convinced the doctors on the above surgery as my best option. Described as a complex surgery it involved removal of my pancreas, spleen and duodenum followed by extraction of the islet cells (insulin producing cells) and infusing them into my liver. The hope is that the islet cells will take hold in the liver and produce enough insulin that I would not be diabetic or less dependent on insulin shots. After the surgery there is any possibility from being insulin free to a brittle diabetic. There is no way of knowing before the surgery what the outcome will be. I am a diabetic with an insulin pump put my pain has been reduced. Taking out the pancreas means it is necessary to take enzymes for the rest of my life. Reconnect all the plumbing and hope. For me it was a 10-hour surgery. I spent 48 out of the next 54 days in the hospital. Recovery has been long and painful with more hospital stays and lots of ups and downs. I never recovered fully but rather hit a plateau and likely will not get any better. I still have pain albeit less than before. I have digestive problems that can change in an instant and complicate my day. One of my biggest issues is lack of energy. I do not absorb nutrients the way I should now. I have had to do iron infusions and take lots of vitamins to help maintain my levels. I seem to be in a mental fog much of the day for some reason. It’s interesting that I think and many people I talk to who have had the surgery talk about they are not as sharp mentally after the surgery. I was diagnosed with PTSD, anxiety and depression. Diabetes is its own monster that I could write a 100-page blog on.
Nobody plans on getting sick, an illness or chronic condition that will completely change your life. Yes most of us have medical insurance, life insurance, etc. But what happens if you get sick and can’t work? What happens if your insurance changes? What if your spouse or family doesn’t offer good support? What if you lose everything you have worked for? What if you just wanted to die? I have lots of emotions when I think about all the things I have been through over the past 8 years of health problems. So many things have happened that changed me. I remember well the list of pros and cons I made to have the surgery. I had a long list of pros as I compared it to my job as a firefighter. My pancreas was smoldering, I wanted to put it out before it burnt out completely. I have never regretted the surgery even if I have struggled at times. It was a gamble that I would do again.
I think for me the hardest part has been accepting my illness and what it has done to me. The disease cost me my health, my job and so many other things. I admit I’m still angry and bitter about getting sick and how it affected me. I get frustrated when people think I’m doing great. They think I should be able to carry on a normal schedule and do normal things. Nobody sees the internal battle I have with my body every day. The scars I have go much deeper than the long scar I have on my belly. I am constantly thinking if my pain will get better or worse, about the number of carbs in food, is my blood sugar going high or low, did I take my enzymes, do I have enough energy, if I do something what will I feel like afterwards, will I be in pain, do I have enough money to cover the cost of things, is there a bathroom near? What could have been if I hadn’t gotten sick? Even though some people question it, I have worked hard to overcome all the setbacks I’ve had physically and mentally. I have tried to deal with and overcome it several ways but still have trouble doing that. I have done counseling, prayed, talked to a couple of friends and read a couple of good books that have been helpful. I have questioned God and my faith, why did this happen to me???? What did I do to deserve this?? Why can’t he fix it? I still have many days I just want to drive to wherever and get away from everything. There are many days I want to crawl under a rock and stay there hoping someone lifts the rock from me. There are days that start off okay but end up disastrous.
I have talked before about my health insurance change and how that has negatively affected my physical and mental health. My last blog talked about how expensive it is to keep me alive. I wonder what will be in store for me down the road. Will my health get better, stay the same or get worse? Will my mental struggles get better or worse? Will my chronic conditions break me financially? All questions I don’t know answers to but will have them in the future!


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