Hello my name is Andrew. Ignore the screen name as it is a screen name I have used since I was 16 and easy for me to remember. I am a night owl normally, something I am working on changing.
My back story. I was diagnosed with ulcerative colitis in 2000. UC is where the body's immune system attacks portions of the large intestine causing bleeding ulcers, malnutrition, and severe pain. This condition was allowed or forced to go on for 7 years till I was on my death bed. medical insurance would not cover the removal of my large intestine until I was near death and I did not have 20,000 dollars to force them to take it out. FINALLY, I got to have the surgery and the pain was removed. I had anxiety and my first panic attack before the surgery but I had no idea it was panic at the time. All I knew is I was 27 years old and in a lot of pain. So I felt blessed to finally have my surgery and end the cycle of pain. BUT I woke up after the surgery in agony, the pharmacy in the hospital sent the wrong pain meds to the recovery area and the recovery nurse by law could not give me the pain meds so I woke up screaming after being split open. I actually begged a nurse to punch me in the face and knock me out. Luckily I blacked out from the pain soon thereafter. I woke up in my hospital room and was lied to by the nurses and the hospital, they told me I imagined the incident. I forced the hospital to pull the records and someone spoke up and told the truth that it all really did happen. I should have sued them, but I was in no mental condition or physical condition to deal with anything like that, and my family talked me out of it later, saying I had no case because I could not prove the mental damage that incident caused. After that incident the panic attacks really really turned on full force. I worked with many therapists and psychiatrists. Some were good and others were fools. One refused to give me medications and others told me I should drink beer because it would relax me. I am also on blood thinners due to have Factor V (thick blood) and having two blood clots hit my lungs when i was 24. (No beer for me). I was lucky those didn't kill me. The doctors missed those as well and sent me to physical therapy to jump rope while i had massive blood clots in my legs.
Next, I battled through a lot, and was finally feeling better, I was losing weight, found a nurse I liked and was in a relationship, I was kinda happy. I decided to replace the RAM in my computer myself, took my computer to the kitchen and was working on it on the kitchen counter. I sneezed really hard. This caused my small intestine to burst through my abs at my ostomy site and twist in a knot. I dropped to the floor in agony and was back in the hospital for emergency surgery. Luckily they were able to save the small intestine and my life once again. BUT after surgery they got the med dose wrong once again and it felt like someone was raking my chest with hot blades, I passed out again from pain, but they quickly corrected the pain meds dose and things got better. I recovered and they sent me home. But then I became even more ill at home and was right back to the hospital. They thought the might have missed something so they gave me blood plasma to reverse the blood thinners so they could go back in. I had a bad allergic reaction to the plasma being fed TOO fast and my throat swelled shut and I could not breath. All I really remember after that were doctors running in yelling, "ok stay with us." Luckily again that did not kill me and they did not have to go back in, they just need to keep me for another week to recover.
This brings me to last year and I developed what they thought was a heart condition. My ejection fraction for my heart came in at under 50%. So the "doctor" called me up and told me I could have a heart attack at anytime and die. (Not something you want to tell a person with anxiety over the phone) This information was not true exactly, I was / maybe am at risk of having a heart attack, but it was only a slight risk as a normal ejection fraction is above 50%, mine was at 48% - 40% the gray area. Months and a heart cath later they find out my heart inside is fine, no blockages, and is just a little weak. During the time it took to make the doctors find that out, I was placed on a ton of heart meds which took my blood pressure down to 70/40. I could barely move and need a walker to get to the bathroom. I am 34 years old at this point. I was taken off the heart meds and kicked out of the hospital without any answers because I was not under threat of dying so I should be treated out patient. My blood pressure went back up to 120 / 80 after the meds were removed and I no longer need a walker. Next I am misdiagnosed with GERD and put on powerful antacids. This entire time I am still having extreme chest pain and GI issues.
I seemed to be getting worse so after 15 ER visits, one doctor looked at my panceatic enzymes, and admitted to the hospital. The number that is normal is around 7-10, mine came back at 3000. They took out my gallbladder because they thought that is what was causing the pancreatitis and it really seemed to help. It was painful and yet another surgery, but overall not as bad. Waking up after the surgery in the recovery room brought back all the painful memories and panic again. I was sent home and felt better, but my symptoms have returned, all the chest pain is back and I was getting weaker and weaker.
So last week they confirmed I have gastroparesis (low to no motility of the stomach). This means my food does not grind up properly in the stomach nor does it empty in a normal manner causing chest pain and abdominal pain. They do not know the cause of the condition, and there is no "safe" treatment or cure. Some people / doctors link the disease to an unknown viral reaction or to diabeteases. I am not diabetic they hve checked that alot. I have scheduled an appointment with a GI motility speacilist 3 months from now at Cleveland Clinic, earliest appointment I could get. I am doing my own research and learning what I can do myself to make my symptoms better so I do not become malnourshied. I am having some success but I am in pain everyday and narcotics only make the stomach empty more slowly and the pain worse over time.
That is where my anxiety and painc attacks come from. My triggers are the pain sensations in my body, especially my legs and upper left side of my chest. My negative self talk is "Oh my God, is this another blood clot, or am I having a heart attack. Am I going to have a stroke, Oh God why do I have to live like this, in all this pain and under threat of death daily and why am I getting all of these illnesses when everyone else I know gets to have a real life." I am very angry, sad, depressed, and many days I feel hopeless. Yes I have thought of killing myself, but I refuse to go out like that. Even with all the pain I have been in and the torture of our medical system I have suffered, I still want to live, I still hold out hope that my life with get better if I just work harder. I have tried many different antidepressants but all seem to have side effects where my muscles randomly contract and hurt. They literally will double me over in pain if I even laugh too hard. Going through life and not even being able to laugh is too much. I will go back to my doctor and try yet another one in the near future, maybe I will get lucky. Valium is my friend right now. Those seem to help the best, but I try to only take them when I absolutely feel I must. I don't tell myself I cannot have one, but I try deep breathing, relaxation, and painc accpetance first. If after a couple hours have gone by and I cannot control it or I am exhausted I take one. I go through around 30 every 90 days. I probably should take more and will look into increasing my usage. They do not seem to be addictive to me and I know I need to space them out to make sure they remain effective. I have a good therapist I see once a month (as that is all my family can afford) I have been denied social security disability twice even with a lawyer. I have dropped in and out of college during all of these medical nightmares and am still a year and a half short of my finance degree (which I have no clue what I can even do with it if I got it because of the health and anxiety / panic issues).
Amazingly, even though reading back through my story it may not sound like it, I am still a reasonably up beat person, even if I am a "little" beat up. I lost most of my friends and my family does not understand me, but I accept that and I am trying to reach out, find help, make new friends online, and challenge myself. I am learning to be creative, my own advocate, and I never let people walk on me anymore. I know I have options, I know I have ways to make my life better and that is the main reason I am here. I want to get the best I can out of the years I have left. I look back some days and am so angry at the lost years of my life, lost to illnesses, and anxiety and painc, but I know making the most of the time I have left is what really matters.
GOALS:
1. Adapt to living with Gastroparesis / long term chronic diseases.
2. Manage panic and anxiety using CBT / hopefully eliminate it.
3. Find a way to support myself by finishing school with social security as a fall back only.
4. Lose more weight in a healthy way (lost 70 pounds due to GI issues since last August)
5. Develop a support system, by making new friends.
6. Hopefully finding someone that I can fall in love with and that will actually look past all the medical issues and love me for who I am.
7. Find a way to make a difference in the world, even a small way, so I know my life had meaning. I know I have helped a lot of people in my time so I have already done this in a way, but I want to do more still.
