Coming home…what I had dreamed of. It was great to be home but the cold, hard reality of all I had been through the last 2 months came crashing down on me. I continued to have panic attacks, I vomited pretty much anything that I ate, endless days of dry heaves and the new sounds that came out my body were frightening.
Living in fear…fear that all the vomiting would compromise the surgery that I just had, fear that I would never get my strength back, fear that I would always need someone to help me. Just walking across the room could cause me to pass out. Needing help to shower and dress because I was too weak to do it myself. Purchasing a walker with a seat so that I could sit down and rest after a few steps. Having to go in public at the age of 44 with a walker and sweating with the exertion of trying to walk on your own. Crying in my bathroom and asking God if living really was the path that was supposed to happen. Overwhelming guilt at the terror that I had put my family through and seeing the stress and fear on their faces. Having to have my husband and teenage children hep me from room to room, help change my dressings, keep track of my medications for me, watch and listen to me wretch and vomit endlessly in those first few months.
Panic attacks that seemed like they would never end….I was taking two antidepressants as well as anxiety medication and it did not touch the endless tears, hyperventilating and horrible nightmarish memories and feelings that I had. I called my physician and visited and was diagnosed with post traumatic stress disorder (PTSD). I thought this was for soldiers, victims of violent crimes…not for someone recovering from an extended ICU stay. I was wrong. This is a very real and very scary diagnosis and although much better now, I still have problems. I have been in the hospital 6+ times since then and had an additional surgery as well. I am unable to be in the hospital, any hospital without having panic attacks. It is embarrassing and humiliating to feel that way and not be able to control it. Those that know me well, know that I thrive on being in control.
My pastor, my hero. I know that all people that read this are of all different faiths and beliefs and I respect everyone’s beliefs, please respect mine as well. This is a man that has been by my side through the worst times of my life. He has the ability to show up at the perfect moments, which are usually my worse moments. This is a man that has visited me in Kansas City multiple times, almost 4 hours away, in Hutchinson, in Wichita, in my home and yes, even at the hospital in Rochester, MN. I even remember him being in Rochester at St. Mary’s hospital. His presence is immediately calming, his prayers are always the perfect words. I have not attended church since my extended hospital stay last year, due to recovery but more due to my ongoing anxiety and my fear of showing too much emotion in public.
My church family is hands down the best group of people. I cannot tell you how much time, food, money and prayers have been given to our family. The constant cards of well wishes and prayers not only from the church, but from the members. The phone calls to check on us, but most of all no judgement on not attending and still loving and caring for us no matter what. Every week I promise myself that this is the week that I am going to attend again and each week I fail. I will try again this week. My faith is stronger than ever and I pray more every day….it’s just another new weird thing I have developed.
I also struggle to go to the grocery store, or anywhere else in public. My body is still so foreign to me. I don’t know when I will need a bathroom but if I do need one, I need it RIGHT NOW. My food does not digest correctly and gas is a real problem. Like I can clear an entire room, make your eyes water and possibly make you vomit gas. Horribly embarrassing. I sometimes just randomly need to throw up. It is usually just foamy, saliva grossness but remember those sounds I mentioned….it sounds like a dinosaur is trying to get out of me. Not something that I can quietly take care of.
In my car I carry toilet paper, extra clothes and have done things I never thought that I would do…before this I would NOT use a public restroom unless it was truly and emergency. Now, I know where all of them are and have used the grossest of gross public restrooms. I have had to stop on the side of the road and squat or vomit or both. Not a pretty picture and one that causes me great shame.
I have a new, larger than ever respect for the elderly and especially nursing home patients. Needing help with going to the bathroom, cleaning yourself, simple daily tasks is humiliating. Even when you’re not in your right mind it is humiliating. In your right mind, when you still feel like you are 25 and need this kind of help is very depressing. Being betrayed by your body and having so many things taken out of your control is awful.
I am supposed to eat nonstop. Graze all day. Eat the highest fat food that I can find. Sounds like I a dream come true….if you have a stomach. When you lose your stomach you also lose your appetite, completely. The hormone that causes you to feel hunger is produced in the stomach so that feeling is gone. The hunger that I feel now is a feeling of weakness, a kind of hollow feeling, severe fatigue. Going from weighing over 200 pounds to now 125 I used to have a “cheat” day to eat whatever I wanted. Now I have a “cheat” day and eat nothing!!!! I feel so much better with no food, even with the weakness and fatigue. No gut issues and I allow myself these days when I know that I am going to leave my house to lessen the chances of having more embarrassing public moments.