How It Feels

        Let’s recap…My wife was forced to retire in 2015 because when she would go to her job of 15 years (before that 15 at another place) her blood sugar would spike to levels beyond 400. She’d be dizzy. Weak. Scared. No appetite. Anemic. Hiadal Hernia. Had a disc removed 10 years before that. She couldn’t maintain her unparalleled work ethic. It killed her inside to not be able to work. We visited a lawyer to apply for SSD. That lawyer told her because she was applying before the age of 50 (she was 49) it’d probably take awhile for her case to be won. In the meantime,we were living on my income,and my insurance would only cover so much of her medicine and doctor visits,as it wasn’t the best insurance and the premiums were atrociously high.

     Working 45-50 hours a week, I did all I could to keep our household afloat. We did everything to adjust her diet. No matter what course of action we took,she just seemed to get sicker. I’ll never forget the night in 2017 we had to go in the ambulance because her diabetes meter read 800. I thought I was going to lose her. She had contracted ketoacidosis,and she almost died. She was only in the hospital 8 days,my insurance wouldn’t cover anymore. She also discovered her shoulders had adhesive capsulitis, couldn’t raise her arms above her head. Torn meniscus in each knee from lifting boxes for years at the holidays as the Head Of Layaway at Walmart. Carpal tunnel in each hand. She wasn’t able to be operated on for any of these conditions because of her anemia. I had to make the difficult decision after that hospital stay with her ketoacidosis to stop working to care for her full time. If her sugar spiked and I wasn’t there,she could die.

    I didn’t think in 2017 that we’d have to wait much longer for her SSD to be approved. The denial had come through a year earlier as the attorney said it would,but the appeal was winnable. Then the attorney went OUT OF BUSINESS. We had to hire yet another attorney. Clock starts over again. What did we do to survive? We had to sell anything we had of value in our home. We had to cash out our 401K’s. We never once wanted to be a part of the system,or ask for help. What we had no choice to do was apply for Medicaid. The savings and 401K money ran out by 2020. Only then did we have no choice but to go to Social Services to apply for food stamps and welfare.

    We existed the best way we could. Karen’s Dad passing 2 days before Christmas in 2020 broke her heart,and much of her spirit. All the while,I tried my best to manage her diseases. I wish I would’ve realized all of the medicine she was on were wreaking havoc on her kidneys and liver. Then the Sepsis in 2023. That’s when we found out her kidneys were failing, after her appendix was taken out. From there,you know the rest. Last year, August 9, leaving her home of 47 years for the last time. The heartbreak and fear of losing your home, never thinking we’d have to spend the 33 % proceeds from the house entirely on a hotel room so we weren’t homeless. Promises from the system that they’d find us a place. Finding out I couldn’t be paid as her caregiver unless I DIVORCED HER. Dignity eroding by the day. Having to depend on the kindness of strangers for survival. The choices we never believed we’d have to make. The agonizing beginning of dialysis. 5 operations in a year,all while living in a hotel. Discovering a lung disease not known before. Being told she can’t have a transplant until we have a permanent home.

       Daily hardship. Daily anxiety. When a bright spot emerges,a door briefly opens,it gets slammed shut. Incessantly worrying about if we can survive everyday. Yes,it tempered my resolve to overcome,my resolve to save her life or die trying. However, there are times I’m flat out broken. You have all had a hand in keeping me going,in every way. I work at this 24 hours,even in the few hours I get to sleep. I just want to thank you. There are so many more horrific events in between everything I’ve described. However,I’m still fighting.

    Karen’s birthday is approaching. I feel like I’m witnessing a decline in her health daily. It’s getting harder. I try to get stronger as it does,but as my family,I’m telling you there are times I don’t know if I can keep it together. That’s why I have to use this outlet to release my intense emotional pain and worry and fear. The bottom line is I’ll always need your help as this journey continues,no matter what the ending might be. Please reach out tomorrow if you can. I have to get my love through yet another operation. Wednesday. I don’t know how much more she can endure. The bottom line is she doesn’t deserve it. She’s the kindest and sweetest soul. Thank you for reading. Thank you for your help.

Brian