Saturday, April 4, 2015

Call the police, my life has been stolen

What three things has Cushing’s stolen from you? What do you miss the most? :

I have to think and try to narrow down my list because there are so many things that Cushing's has stolen from me. It makes me mad, sad, angry, grateful, happy, and confused just thinking about all the things Cushing's has done to me.

First, Cushing's has taken time away from me. It has taken the last two and a half years away from me. From the time I was diagnosed until after surgery and then beyond that I have lost time. Time that I was in a coma and on a ventilator and had no idea what was going on around me. Time when I was so tired because of this damn disease that all I could do was sleep and go to the bathroom. Sometimes I slept for days, only waking up to go to the bathroom. I didn't eat. I was too nauseated or vomiting too much.  Time when I was hospitalized and missed out on parent/teacher conferences, school plays and performances, time after school when I could ask about my kids' day and help them with homework, holidays I spent in the hospital because of complications, and birthdays that I was in the hospital so I missed out on the celebrations.

Second, Cushing's has stolen my mind from me. I have major depression and anxiety issues because of Cushing's. My brain acts very crazy now and my emotions are so unpredictable. I can be happy and laughing one minute and in a full blown anxiety attack the next. I never know what will set me off. I do know some triggers. Balloons are one of my triggers. Hi, my name is Tammy and I am scared to death of balloons. It doesn't matter if they are inflated or not. They scare the crap out of me. If they are inflated it gets worse and if one is popped, watch out because I am going to be totally crazy and unglued. I don't know why, but they terrify me. I feel like I'm crazy and I've lost my mind. Another thing I am scared of is having my doors open or the windows open where people can see in my house. Scares me into a anxiety attack. Don't know why, just don't want people looking in at me.  I can go into anxiety attacks anywhere. I have had to excuse myself from the table when I have been out with friends so I could go to the bathroom. I lock myself in a stall and fall apart. I have a full blown anxiety attack. After I get through it, I pull myself back together and then go back to the table. I would rather someone think I have bladder issues than to witness one of my anxiety attacks. The depression makes me want to sleep and not go anywhere. I have to force myself to get out every once in a while, just so I don't become reclusive and totally anti-social.

Third, Cushing's has stolen my life as I knew it. I had a tough life, but I was adjusting to it. My first husband died when I was 37 years old and he was 36. That was life changing for me. No more normal. I had to create a new normal for my children and myself. Then, just when things started to look up and we were starting to be happy again... Cushing's comes along and steal my life as I knew it. I was a part-time college student. I also worked part-time at The Library Center, one of about 10 libraries in the Greene County Library District. I was a circulation assistant and I absolutely loved my job. It was the kind of job that I got up looking forward to going to work. I worked with such beautiful, wonderful people that were more life family than co-workers. They were my wonderful friends and family. They helped me out so many times when I really needed it. When I was absolutely lost, they came through for me and showed me how much they cared and loved me. I miss them and my job so much. The library patrons, whether they were regular or someone I just saw one time, made my life interesting and I miss them also. Just the things I had planned that I wanted to do. I was going to college to become a middle school teacher. I wanted to make a difference in someone's life. I had to chuck those plans.  Cushing's stole my ability to be able to make plans ahead of time because I don't know from one day to the next and sometimes from one moment to the next how I am going to feel. Am I going to have enough energy to do something? Life is so different now. I have so many things wrong with me that I have spent the majority of the last couple of years in the hospital. Certainly not life as I knew it before. Before Cushing's the only time I was hospitalized was for each of the births of my three children, when I had an appendectomy, when I had my gall bladder removed, and when I had my left ulnar nerve repaired (surgery on my elbow to relocate a nerve that was pinched into a spot it wouldn't pinch anymore.).  Now, I have been in the ER and hospitalized so many times that I am well know to the doctors, nurses and PCA's  and even some of the kitchen staff and housekeepers. I am now on Disability because of my illnesses and because I spend so much time in the hospital that there is no way I could be employed.

Cushing's stole my life because there was at one point that I was in a wheelchair to get around. I was so big I couldn't give myself a bath because I would get too exhausted. I couldn't do laundry, wash dishes, do any household chores.  I was too tired and hurt too much all the time. Cushing's robbed me of just normal everyday life. The things most people take for granted, I couldn't do because of Cushing's.

What do I miss the most? The time I have lost because I know just how precious time is. I missed out on memories that I can never make now. My kids are growing up so fast and there is no way for me to make up for that missed time. I have missed out on first days of school and the report afterwards of how the school year was going to be. I even missed out on the daily grind, the normal stuff. I can't make memories off of the time I was in the hospital because of Cushing's. Or in bed sleeping and not functioning because of Cushing's. I know life is precious. It can be gone in the blink of an eye. You have to live life to the fullest and get everything you can out of it.  You never know when something is going to happen and your life will change forever.

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