www.incontinentsupport.org

On Friday I had my intrathecal pain pump removed. I hadn’t gotten pain relief for awhile and in January they did a dye study and it showed that the catheter that delivered the medicine had detached from my spine. They said it was because I transfer so often in my wheelchair. I have had over 40 surgeries and just don’t want more if I can avoid it so I opted to have it removed. We planned to do it soon after I had the dye study done but life had other plans. I had my SPC placed and kept getting infections, one landing me in the hospital for a week then another week long hospital stay with GI issues. I finally didn’t have an infection and went for my pre op appointment and hit another road block. They found a right bundle branch block in my heart. So I had to be cleared by a cardiologist. There were no appointments anywhere until June 28th. That finally arrived and after an echocardiogram I was cleared for surgery. I stayed infection free and finally had the surgery Friday. The surgery was running late, as they often do. The person before me had some complications. It was finally my turn and all went well. I woke up to find out that my case worker who was supposed to accompany me home since you can’t go home alone after surgery (I had general anesthesia with a breathing tube) had left and abandoned me at the hospital. I was in tears and the amazing nurses and caseworker worked miracles and were able to get me medical transportation home. It was an additional issue that I’m a full time wheelchair user. I overheard the nurses begging my case worker not to leave me. It was absolutely horrible. I finally got home that night. I’m doing okay just really super worn out. I’m just laying here listening to music. I can’t really do much. My regular weekend home health aide was off this weekend but my aide agency was amazing and found someone to be with me yesterday evening from 4pm until midnight last night and she will be here tonight as well. I am supposed to be moving to a completely accessible apartment soon. My inspection was Thursday and it didn’t pass because my landlord ran into issues with grandfather clause laws. I was really upset but am now glad I have more time to recover. My pain and everything is fine I’m just really wiped out. I had reported before that since my bathroom isn’t accessible that I was having to use diapers for bowel movements but recently I’ve not even been able to hold it. Bowel incontinence seems to be the new normal for me and it’s a whole new ballgame from urinary incontinence. Northshore discreet bags have been a lifesaver. I do need help after a bowel accident which I hate but it’s just become something that it is what it is.

Hopefully no surgeries for awhile and my energy comes back soon. Life goes on. This will not stop me. Onward and upward!