Regrets

Tonight I was reminded just how limited I have become

I was born with XLH rickets and it caused severe leg bowing and bone pain growing up, but I never thought it would ever limit me long term. This wasn’t helped by my parents not taking it very seriously either.

Fast forward to my early 20s where it started to become more of an issue, while other health issues started to crop up and compound my plight. Gallbladder having to be removed in early 2013 plus six months later the appendix having to go. That was a nightmare. I didn’t receive any real discharge instructions so I didn’t heal quite like I should have as well as the complications I had from the surgery.

The Hernia I had to have repaired a couple years later didn’t help the situations at all. After the gallbladder was removed I had horrible dumping syndrome and damaged abdominal nerves so I would be out and about and lunch or breakfast or any real meal, would set off a fun game of shit roulette and often I was the loser.

So I withdrew from public life. Between the effects of my illnesses and depression I just couldn’t take it anymore so I became a recluse. Eventually my health deteriorated to the point I couldn’t walk anymore, and became reliant on my wheelchair. I couldn’t sit up for long periods of time due to the abdominal pain and pain in my lower back.

Found out that my spine was beginning to fuse. Ankylosing Spondylitis was the cause of that. The final nails in the decline have been the development of Tracheomalacia and Diverticulitis that required a colon resection.

I know that I couldn’t change my illnesses (which I’ve only brushed the big dollar ones here) but I feel truly in my soul that I could have made better decisions in my younger years and possibly pushed this decline off another 10-15 years.

I miss being able to go places with my husband and family. I miss vacations, grocery shopping. I miss being able to adjust in the bed without a miracle and a prayer. I miss being able to shower unassisted. I miss not having to depend on everyone for every damn thing.