Post-Intensive Care Syndrome (PICS) - Let's talk

Have you heard of Post-Intensive Care Syndrome? Sometimes it’s called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let’s chat. Why not start by introducing yourself?

@colleenyoung

Oh my goodness, @rckj what an ordeal. I can hardly imagine. I'm not surprised that you're grumpy and numb and not sure how to feel. You still have to recuperate. Be kind to yourself and give it time. Crying is okay too. Thank goodness for your husband. He sounds like a gem.
It is so tiresome to constantly need care. I know that you are physically and emotionally tired and you're pulling from reserves that are empty. But I wonder if it might give you pleasure and satisfaction to do something for someone – like your husband? Keep it super simple. Ask him to sit with you, take his hand and simply let him know how appreciated he is. I'm sure he knows that and no doubt you tell him. But look at it with a slightly different perspective. Instead of seeing as a position of vulnerability and needing him. Think of giving him a gift of appreciation from a position of strength. It's the "care" you can give him. Is that crazy?

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@colleenyoung great to hear from you. Thanks for the TLC! My husband is amazing and the minute I heard your idea, I felt better. I can’t cook right now, we have help but it’s not the same. We do have a terrific Asian Fusion restaurant about 5 miles away and he loves sashimi. Ordered him what he likes and some Chinese noodles with protein for me, I’ve been getting the riot act from all medical personnel about eating more protein. Helper will pick up and set up and clean up. Probably in bed with a big bath towel as I’m still very weak. He doesn’t know yet, will know when it arrives. Set up the bedroom music system for his favorite music too. I feel much better, thank you so much. Suddenly energized and happier. I can actually do something that is not self centered and is for him and for us as a couple. Didn’t think I could feel happy right now but I do. My husband and I have been talking and holding hands throughout this but I think it was more his comforting me. You are so wise to have thought of what I can give him as a gift of appreciation. This was easy, haven’t needed anything but a phone and he will, I think, feel loved and taken care of by me. And I do feel stronger, more myself. Thank you so much and all my appreciation. Rhoda

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@rckj

@colleenyoung great to hear from you. Thanks for the TLC! My husband is amazing and the minute I heard your idea, I felt better. I can’t cook right now, we have help but it’s not the same. We do have a terrific Asian Fusion restaurant about 5 miles away and he loves sashimi. Ordered him what he likes and some Chinese noodles with protein for me, I’ve been getting the riot act from all medical personnel about eating more protein. Helper will pick up and set up and clean up. Probably in bed with a big bath towel as I’m still very weak. He doesn’t know yet, will know when it arrives. Set up the bedroom music system for his favorite music too. I feel much better, thank you so much. Suddenly energized and happier. I can actually do something that is not self centered and is for him and for us as a couple. Didn’t think I could feel happy right now but I do. My husband and I have been talking and holding hands throughout this but I think it was more his comforting me. You are so wise to have thought of what I can give him as a gift of appreciation. This was easy, haven’t needed anything but a phone and he will, I think, feel loved and taken care of by me. And I do feel stronger, more myself. Thank you so much and all my appreciation. Rhoda

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Jubilation! It wasn't such a crazy idea after all. You're amazing, Rhoda. Enjoy your soiree!

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@colleenyoung

Jubilation! It wasn't such a crazy idea after all. You're amazing, Rhoda. Enjoy your soiree!

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@colleenyoung definitely not a crazy idea! Thank you for everything! Rhoda

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@colleenyoung

Jubilation! It wasn't such a crazy idea after all. You're amazing, Rhoda. Enjoy your soiree!

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@colleenyoung thanks again. Dinner and music went beautifully. He was surprised and we both were happy and peaceful for the first time in a long time. We both are much calmer and more ourselves and it is lasting. Thank you for helping us get our lives back on track. I know there will be more hard times but I won’t ever forget how amazing this was and that I can, at other times like this, do something to make it better. You are wonderful and I can’t thank you enough. Rhoda.

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@rckj

@colleenyoung and all it’s Rhoda back from a very rough ride. Mayo was as usual helpful, whirlwind and cold, as in physically cold. 50 below zero actual and two foot blizzard while we were there. Fortunately able to use tunnels. No definitive answer for stopping adrenal crises except updosing hydrocortisone when ill. They are looking for rare exotic illnesses which is scary. Testing continuing back home and sent into Mayo. Had a severe adverse reaction to MRI contrast dye (gadolinium) while there, another hospitalization. Sigh! Worse how ever when returned home. About 5 days back from Mayo couldn’t breathe, cyanotic, blue nails and lips. Oxygen saturation 83. Whoa! My home based physical therapist called husband and MD, fast track to ER and ICU. I was in denial, thinking asthma attack. Turns out to be large bilateral pulmonary embolisms with right cardiac “strain”. Enlarged heart, right side due to not enough lung serface to pull in oxygen. On Lovanox injections ( wonderful husband doing them twice a day) and Coumadin (blood thinners) basically forever. Will be just Coumadin when I get a therapeutic level, blood levels every day. Will take months to return to baseline with lots of help. Fortunate to have the help. Back home after 10 day hospitalization, 4 days in ICU. Still I am strangely numb and grumpy, mostly in my head because I figure other people shouldn’t have to put up with me. Home now a few days, don’t know what to feel just following medical advice. Coumadin is a hard drug to take, lots of food restrictions and have to be careful in general. Covered with gigantic bruises. I mean like grapefruit sized. I hate that everyone is now asking me if I’m safe at home with my wonderful husband. Oh well, that’s minor. Numbness bothers me, feel odd, I’ll am affectless but need to cry. Didn’t need another major life threatening illness. I feel like I’m living with internal time bombs. So physically and emotionally tired, any and all responses welcome, I feel bewildered. Hope everyone here is okay maybe even stable and well. Thanks to all in advance. Rhoda

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@rckj
Thanks for sharing your update. You really got more than you had anticipated, even the 'cold' weather was unexpected. I am thankful that you are home now. I realize that the one step at a time phase is a real drudgery. I send you my hopes and prayers that the steps keep on moving on a level path.

I am all in favor of crying, too. Sad tears, frustrated tears, confused tears, and even an occasional happy tear that can will creep in now and then. Small moments of hope and happiness are worth looking for. I decided to write them down, so I could be reminded of them. My intent was to find one everyday. However, as time passed and I began looking, I found more and more 'blessing' moments especially in the tiny things that occurred. If you need a way get thru the drudgery, I offer keeping a blessing journal or a progress journal as a posibile diversion.

I love Colleen's crazy idea! I was teary eyed as I read about your experience. You are a blessing, by being you. Your energy is powerful.

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@rosemarya

@rckj
Thanks for sharing your update. You really got more than you had anticipated, even the 'cold' weather was unexpected. I am thankful that you are home now. I realize that the one step at a time phase is a real drudgery. I send you my hopes and prayers that the steps keep on moving on a level path.

I am all in favor of crying, too. Sad tears, frustrated tears, confused tears, and even an occasional happy tear that can will creep in now and then. Small moments of hope and happiness are worth looking for. I decided to write them down, so I could be reminded of them. My intent was to find one everyday. However, as time passed and I began looking, I found more and more 'blessing' moments especially in the tiny things that occurred. If you need a way get thru the drudgery, I offer keeping a blessing journal or a progress journal as a posibile diversion.

I love Colleen's crazy idea! I was teary eyed as I read about your experience. You are a blessing, by being you. Your energy is powerful.

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@rosemarya so happy to hear from you. It’s been a rough ride, scary, but I am still numb. Need to cry, but it feels “stuck”. Colleen’s (@colleenyoung) idea made a huge difference in my husband and my life. It felt like returning to normal for a bit and enjoying happiness with each other. We are still lighter and happier than we were, which helps so much. Thank you for what you said about being a blessing and having powerful energy. It feels like ,with all of this, I forgot my strength. Running ahead with Colleen’s idea was like life flowing through my veins again! Thanks Colleen!!! Thank you too Rosemary! I have a long recovery road ahead and the new risks and medications will be lifelong. But, I am alive! It was a close call. Scared a bit as I say this right now but I hope for a lot more time ahead with my husband, my family and friends. I hope so with all my heart. Thank you both. All my best, Rhoda.

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@rosemarya

@rckj
Thanks for sharing your update. You really got more than you had anticipated, even the 'cold' weather was unexpected. I am thankful that you are home now. I realize that the one step at a time phase is a real drudgery. I send you my hopes and prayers that the steps keep on moving on a level path.

I am all in favor of crying, too. Sad tears, frustrated tears, confused tears, and even an occasional happy tear that can will creep in now and then. Small moments of hope and happiness are worth looking for. I decided to write them down, so I could be reminded of them. My intent was to find one everyday. However, as time passed and I began looking, I found more and more 'blessing' moments especially in the tiny things that occurred. If you need a way get thru the drudgery, I offer keeping a blessing journal or a progress journal as a posibile diversion.

I love Colleen's crazy idea! I was teary eyed as I read about your experience. You are a blessing, by being you. Your energy is powerful.

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@rosemarya @colleenyoung I haven’t lost the good feelings of what my husband and I created, with your help, but I’m afraid this is round two of this episode. In ICU with sepsis of unknown cause and adrenal shock, unstable Coumadin levels. I am still quite ill so hope this is coherent. It’s 3 AM, EST, wakeful and ill. High dose antibiotics, supportive measures, etc. You know what it is like. I’m scared, sent husband home to get some rest, I’m reasonably stable, I think. Getting lots of TLC from staff but can’t help staring at all the emergency measures around me, especially intubation tray. So emotionally tired but primarily scared. I feel like my body is betraying me. I used to be so physically strong, worked out every day. Maybe I thought I was invincible. Seems silly now as none of us are without vulnerability. Trying to keep reviewing in my mind the wonderful dinner and music night with my husband and all your support. Will hang on, somehow. Life, my husband and I need each other. All my best, Rhoda.

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@rckj

@rosemarya @colleenyoung I haven’t lost the good feelings of what my husband and I created, with your help, but I’m afraid this is round two of this episode. In ICU with sepsis of unknown cause and adrenal shock, unstable Coumadin levels. I am still quite ill so hope this is coherent. It’s 3 AM, EST, wakeful and ill. High dose antibiotics, supportive measures, etc. You know what it is like. I’m scared, sent husband home to get some rest, I’m reasonably stable, I think. Getting lots of TLC from staff but can’t help staring at all the emergency measures around me, especially intubation tray. So emotionally tired but primarily scared. I feel like my body is betraying me. I used to be so physically strong, worked out every day. Maybe I thought I was invincible. Seems silly now as none of us are without vulnerability. Trying to keep reviewing in my mind the wonderful dinner and music night with my husband and all your support. Will hang on, somehow. Life, my husband and I need each other. All my best, Rhoda.

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Thanks for sharing. Though I did spend 2 nights in ICU and had a really bad experience due to th particular nurse assigned to me, I did come home and now it's almost 4 years since I was there.

I do pray you are improved soon. AND yes, sometimes it is difficult to sleep in hospitals.

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@eileena

Thanks for sharing. Though I did spend 2 nights in ICU and had a really bad experience due to th particular nurse assigned to me, I did come home and now it's almost 4 years since I was there.

I do pray you are improved soon. AND yes, sometimes it is difficult to sleep in hospitals.

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@eileena thank you for your support. I really appreciate it. Been in ICU quite a bit due to chronic condition but have gotten good care. Sorry you had a bad experience. Thanks again for your good wishes on this very sleepless night!

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@rckj

@rosemarya @colleenyoung I haven’t lost the good feelings of what my husband and I created, with your help, but I’m afraid this is round two of this episode. In ICU with sepsis of unknown cause and adrenal shock, unstable Coumadin levels. I am still quite ill so hope this is coherent. It’s 3 AM, EST, wakeful and ill. High dose antibiotics, supportive measures, etc. You know what it is like. I’m scared, sent husband home to get some rest, I’m reasonably stable, I think. Getting lots of TLC from staff but can’t help staring at all the emergency measures around me, especially intubation tray. So emotionally tired but primarily scared. I feel like my body is betraying me. I used to be so physically strong, worked out every day. Maybe I thought I was invincible. Seems silly now as none of us are without vulnerability. Trying to keep reviewing in my mind the wonderful dinner and music night with my husband and all your support. Will hang on, somehow. Life, my husband and I need each other. All my best, Rhoda.

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@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

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In 2014 I was became suddenly ill with H1N1 flu and double pneumonia and very high fever. My husband took me to the doctor who called an ambulance. I lost consciousness on the way to the hospital and I didn't wake up for four weeks. I was admitted to ICU critically ill. I was in a coma for four weeks, had a tracheostomy for about 6 weeks, had many complications including sepsis, pulmonary embolism, kidney failure and dialysis, blood transfusions, shocked twice, the organ donation people were called and my family were called to say goodbye to me. I was paralyzed in all four limbs, unknown reasons. Incontinent. My husband was asked to sign a DNR but he refused. I was 62 and had been previously healthy. I was a non smoker, non drinker. A hiker, an amateur wildlife photographer, Girl Scout volunteer, and had recently retired. I was hospitalized for 55 days, five weeks in ICU, then PCU which was pure terror (they were horrid), and then inpatient rehab. I had many kind nurses, but some unkind experiences and those are ones that haunt me. On ICU, the nurses allowed a strange man off the street in my room bc he said was a pastor (he wasn't). They didn't ask my family. I'm haunted that he was allowed in my room and violated my privacy. My first memory when I woke up from the coma was seeing myself naked from the waist down. He was a friend of friend but had no business in my room. He was not on the list approved by my family for visitors. I no longer speak to this friend. AND HE IS NOT A PASTOR!! I do not know him!! It's a violation of JCAHO!!! On ICU and PCU I had my commucation writing board taken away from me. I had a trache and couldn't speak and I was paralyzed and couldn't ring for the nurse. It was terrifying. No wonder I have PTSD or PICS. I'm convinced they would have killed me eventually. My daughter was livid and complained all the way to the VPs. One nurse was fired. The VPs were shocked when they saw how ill I was. The nurse told them I was being difficult and demanding, then they saw I couldn't speak and was paralyzed. I couldn't even roll over on my own. What shocks me today is that my doctors haven't even heard of PICS. I have a liberal arts degree. How can I know more about that than them ?! I'm about 85% recovered now. But they call me a liar. They try to tell me to forget about it. I've been seeing a therapist since my discharge. I have sleep issues, I don't want to alone. I can't sleep. I'm always back in ICU. I still cry. My life changed. My friends changed. Many of my friends turned their back on me after my discharge. It has taken me a long time to get my life back together. They expected me to jump back in and do my volunteer work. When I couldn't, I was excluded. That was so hurtful. It's true about finding out who your true friends are.

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@sacker

Good Morning,
I have a long history with medicine as I am in a solo practice and provide care for Family practice and OB, so being on the receiving end of care has been challenging. I had an unexpected month long visit to the ICU after cardiac arrest a few months ago. I focused on root cause and how to prevent this from happening again. Prior to this, I was healthy and had no health concerns. Now…I am ''chronically ill'' with no answers as no one seems to have treated my new condition. I am realizing now that I am back to work part time, that I am a much different person that before! physically and mentally. I have search Colorado Springs and no one has heard of PICS but I completely have it. I feel the minute I walked out of the hospital I was left to my own devices, as my providers really have no idea so at this point, don't ask me to follow up with them as they don't have answers. I have become fearful, irritable and just a mean person I have noticed, which is not me at all! I yell at my husband for checking on me, as I just want to be normal, but everyone looks at me like im sick. I am 45 years old and not ready to be one of my chronically ill pts. I really have no idea where to start looking for treatment as no one believes me that this is happening. Any guidance would be great!

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I had a critical illness in 2014 and was diagnosed with PTSD. I found my own therapist also since no one in hometown including my ICU doctors have heard of PICS. But after a one false start with a therapist who tried to convert me to her religion!! I landed with a therapist who treats mainly sexual assault survivals. For me, it seems to be a good fit. Trauma is trauma. Meds don't do well for me either and if I felt the need for them my PCP would help there. My therapist and I have been navigating this trauma fairly well. I get really frustrated with the medical community in general who don't seem to recognize PICS. I talked with the ICU doctor who treated me who didn't believe PICS was real. He told me I just needed to forget about about my ICU experience. My husband was with me and he spoke up and said he is a Vietnam vet and said he has PTSD. He told the doctor that PTSD is very real. Hubby said it has taken him 50 years to have a peaceful sleep. The doctor shut up then. Then I said I wanted to talk to the residents, or nurses about my ICU experience and he said my experience was of no value. He was an ass.

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@janegigi

I had a critical illness in 2014 and was diagnosed with PTSD. I found my own therapist also since no one in hometown including my ICU doctors have heard of PICS. But after a one false start with a therapist who tried to convert me to her religion!! I landed with a therapist who treats mainly sexual assault survivals. For me, it seems to be a good fit. Trauma is trauma. Meds don't do well for me either and if I felt the need for them my PCP would help there. My therapist and I have been navigating this trauma fairly well. I get really frustrated with the medical community in general who don't seem to recognize PICS. I talked with the ICU doctor who treated me who didn't believe PICS was real. He told me I just needed to forget about about my ICU experience. My husband was with me and he spoke up and said he is a Vietnam vet and said he has PTSD. He told the doctor that PTSD is very real. Hubby said it has taken him 50 years to have a peaceful sleep. The doctor shut up then. Then I said I wanted to talk to the residents, or nurses about my ICU experience and he said my experience was of no value. He was an ass.

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@sacker I’m sorry 😐 you’re experiencing so much but as everyone has already validated for you, YOU are absolutely right in taking the best therapeutic steps for you to move forward. I am living proof that anyone is diagnosable EVEN if the proverbial “they” don’t know who, what, when, why, where life and traumatic events have taken you! I too deal with maintaining a good mental and physical pain that requires a. A listening hear b. A vote of confidence c. Caring that goes Above and BEYOND the call of duty in these extremely stressful times and d. Discovering these forums and helping people like ourselves persevere.
I had several “change who you are” religious excursions and it was scary when I looked back at my medical records to see someone actually wrote something in MY CHARTs that I knew in my heart was someone else’s opinion (caretaker, home-health-aide, et al). Stay TRUE to yourself and be careful!! Lots of great things heading your way…..
Candi

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@menville

@sacker I’m sorry 😐 you’re experiencing so much but as everyone has already validated for you, YOU are absolutely right in taking the best therapeutic steps for you to move forward. I am living proof that anyone is diagnosable EVEN if the proverbial “they” don’t know who, what, when, why, where life and traumatic events have taken you! I too deal with maintaining a good mental and physical pain that requires a. A listening hear b. A vote of confidence c. Caring that goes Above and BEYOND the call of duty in these extremely stressful times and d. Discovering these forums and helping people like ourselves persevere.
I had several “change who you are” religious excursions and it was scary when I looked back at my medical records to see someone actually wrote something in MY CHARTs that I knew in my heart was someone else’s opinion (caretaker, home-health-aide, et al). Stay TRUE to yourself and be careful!! Lots of great things heading your way…..
Candi

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When I first woke up from the coma, I had no idea where I was or what had happened to me. I couldn't move bc I was paralyzed. I could not speak bc I had a trache. People were around me but no one was talking to me. I could hear religious music which I would never have listened to. I thought I'm in a funeral home. These people think I'm dead! I knew I needed to make them realize I'm alive. I tried to move, but I couldn't. I could hear them say was going to die. I cried. I thought maybe if they see my tears they would know I'm still alive. I would see men in suits wheel bodies down the hall. I later learned that the death rate in ICU was high from the flu which was why I was there. As I began to recover, the staff would tell me. Everyone your age had died. That didn't help at all. Were they trying to make me feel guilty? At one point I had an MRI thoughtless staff put the panic button in my paralyzed hand. I had regain some use of one hand, but her thoughtlessness was horrid. I panicked. A cage was placed over my face. When I was taken out, but the cage wasn't removed. I pounded on the cage with the one limb I could now move. I could hear the the MRI staff laughing and say you're going to hurt your hand. I was sweating profusely. I was in a panic and mouthing the word HELP!! Finally when a staff person removed the cage removed the cage, he said in a concerned voice – get her nurse ! Get her nurse!! I don't know what I looked like but it must have been bad. My kind nurse took over but bc of the trache I still couldn't tell her what had had happened. My doctor tried to tell me things that happened were hallucinations, but the worst things that happened were not hallucinations. It was the cruelty of the staff. I can not be around religious music. The staff tried to convert me, pretty bad since I was in a public hospital. That should not have happened. My family asked them to stop playing that music and when they would return it be playing again. They were determined to convert me, even through rehab and my follow-up care. I'm now terrified of hospitals and doctors offices. I have had panic attacks at both. I never had happen before. I retired from working at hospitals. I knew things were supposed to be better than the way I was treated. Especially since I was hospitalized in the one I had work at. I even remember seeing many familiar faces.

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@rosemarya

@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

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@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.

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