@rckj,
I just got up and saw your message. I have been thinking about you during the last couple days, but in my concern about interrupting your recent happy moments, I hesitated. You have presented a very clear picture of what it feels like to be surrounded by all of the strange medical equipment and devices. I used to feel that they were hard, cold, and artificial, but they were essential for treating me. As I lay there looking at them, I also used to grieve over the way I used to be. I think that you are not alone in your fears and your feelings. You are not being silly; you are being human.
Rhonda, I used to enjoy, even look forward to visits by the hospital chaplain. I don't know what your spititual background is, or if you have any - that is not my intent to discuss. Have you looked into whether there is someone on staff (spiritual or counseler) who might be able to visit with you. My chaplain mostly listened to my fears and my concerns without any judgement. Just having someone to care, to listen and to hold my hand was a big help.
You and your husband share a very special love. I am happy for you. My husband and I will be celebrating 44 years together this year. During my illness, I struggled with my feelings about what I 'was putting him through'. He would always take my hand and tell me that this was the 'In sickness and health" part of our marriage vows. And I knew that I would do the very same thing for him if roles were reversed.
I hope your days get better for you as the medications and the doctors work toward a better life for you. I am reaching across the miles wiht a gentle hand squeeze.
Rosemary
@rosemarya thanks for your response, I greatly appreciated it! I just got out of the hospital again, round 3? I don’t know I’ve lost track. Spiked a high fever and sepsis so another ICU stay then another 10 days. I am fortunate to have a strong support system including a wonderful Unitarian minister who visits with me. I’m Jewish and Unitarian my husband is Unitarian. Actually the minister is the person who married my husband and I, so she has special meaning to us! As usual, tired of the hospital although the hospital itself is terrific. They have had meetings for staff on how to treat my rare illness and everyone seems to know what to do. Unheard of in this day and time of diminishing resources! Sometimes I feel like my body has betrayed me as I used to be so healthy and strong but it is what it is, I just need to learn to cope with it and have the best life possible, for myself and my husband. I struggle too with what my husband has to go through. He keeps telling me that that’s part of his life as my husband but I can see that we are both stressed. Still working with the medical teams on ways to get more stable and minimize the need for hospitalization. Anyway, that’s the update. I keep wondering if they begin to sound all alike, although it’s different each time, somewhat. I’m so glad you have your wonderful husband too and congratulations on your upcoming anniversary. I hope all is well with you and hope I don’t always have to start a conversation with a hospital update! Thank you for your kindness and I treasure the long distance hand squeeze! Sending my caring and all my best wishes. Rhoda.