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Posts (71)

Thu, Aug 27 7:59am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@colleenyoung @rosemarya
It’s been a long time since I’ve posted but I’m hoping some of the group may remember me. This is Rhoda. I have had multiple ICU stays with Addisons Disease and Addison Crisis and sometimes sepsis. I take hydrocortisone for the Addison’s and was weak but more stable for awhile. Three weeks ago I was diagnosed with type two diabetes, insulin dependent and have had one ICU stay and two other hospitalizations for a combination of low blood sugar and addisonian crisis. I’m overwhelmed and scared. I have a terrific endocrinologist at Mayo but live on the East coast. Despite fairly good local hospitals, Endocrinology for Addisons and its interaction with diabetes doesn’t seem great. I read on the NIH website about the interaction and their articles say that I will have more lows and be less likely to recognize them, due to the lack of cortisol as a supportive and warning system. I am blood testing 5 times a day.
I am afraid to sleep due to fears of a low in sleep that wouldn’t wake me. In fact, the ICU visit was precipitated by my husband being unable to wake me. Also seems like increased Addisonian crisis episodes. PCP here thinks body is not yet used to lower blood sugars. My initial values for diabetes were terrible, fasting blood sugar at 496, A1C 11.8. Data indicates I have only been diabetic for two months, it’s now three weeks from the diagnosis. PCP bringing down blood sugar slowly to avoid shock. I am a very compliant patient, doing everything that is being asked. I have signed up for diabetes site here but haven’t seen anything yet for new diabetics or comorbid conditions. Any thoughts would be appreciated. Hope all is as well as as can be expected for all in the group and elsewhere. Thank you, Rhoda.

Oct 11, 2019 · Map Dot Fingerprint Dystrophy in Eye Conditions

@bobr1040 hi again, Bob. Glad to hear about the improvement in eye. I definitely use self hypnosis for healing and pain, mindfulness meditation for over well being and quality of life. Definitely ask for pain meds post op for peripheral pain.any pain or stress impedes healing. Hope you like the book but if you don’t I have other options. There is also an app available called CALM, which plays music and guides you through safe place imagery. The have a large number of options available. I usually don’t like the web hypnosis programs but I like this one. Also pricey but they do give you a free week to try it out. You just have to remember that they will charge you at the end of week for a years usage. You automatically opt in unless you tell them you don’t want the app. At any rate I find it helpful. Glad to be comparing notes again and chatting. Looking forward to staying in touch. Chat soon. Rhoda @rckj

Oct 11, 2019 · Map Dot Fingerprint Dystrophy in Eye Conditions

@bobr1040 hi Bob, it’s Rhoda. Sorry so long to get back to you but my other medical condition flared, requiring hospitalization. I am
more available now, baring a few inpatient procedures. In terms of books and hypnosis for pain, illness, etc., try Corydon Hammond, “ “Handbook of Hypnotic Suggestions and Metaphors”. It bridges the clinician patient gap nicely, is easily absorbed and has large numbers of scripts and suggestions to use. It is organized by topic and easy to use. Hope it helps. It is pricy but any good university library should have a copy for loan. You are already using some sophisticated solutions but this book should add to them and give you new ideas. It’s a good addition to pain killers and to the techniques you are already using.
How are you now? Hoping we can stay in touch. I have been uncharacteristically inconsistent but will try to be better, illness allowing.

Best wishes,
Rhoda @rckj

Sep 15, 2019 · Map Dot Fingerprint Dystrophy in Eye Conditions

@bobr1040 hi it’s Rhoda @rckj Does this way of communicating work for you? Wasn’t sure after your last post. Happy to chat again whichever way works for you. Would FaceTime or Skype help? Or dictating? Glad to hear that the yoga helps, it’s really good for healing. Looking forward to comparing notes soon. Also finishing up my and my husbands taxes so I have a little bit of an idea of the rush! Hope to talk soon. Regards, Rhoda

Sep 15, 2019 · Map Dot Fingerprint Dystrophy in Eye Conditions

@rwinney hi Rachel. Nice to hear from you. You have had a really rough time of it! Glare and bright light bother me all the time but especially post operatively. I’ve had a few years with some stability from the corneal dystrophy and have been able to drive. Some destabilizing now, may need more laser surgeries, not yet at the point.of needing transplant. I have another unrelated illness that I am also struggling with, improvement with help from Mayo in Rochester. I’m not totally sure about all the factors that contribute to the photophobia. For me, it’s that the layers of the cornea are unstable and not flush with the eye. They don’t seem to act like the filter they are supposed to be. The neuro ophthalmologist continues to be helpful to me. Maybe yours will have some ideas? I think is good that you are getting the nerve and corneal specialists to weigh in. I hope they have some ideas. I know mine is worse as the day goes on and glare is especially uncomfortable. When the nerves are inflamed it is worse. Sorry for your struggle and I hope we can stay in touch to share the battle and potential solutions! Best wishes, Rhoda.

Sep 14, 2019 · Map Dot Fingerprint Dystrophy in Eye Conditions

@bobr1040 hi, this is Rhoda @rckj. Sorry it took me a day to get back to you. Also, if you feel comfortable explaining to me what kind of peripheral pain you have, I might be able to answer your questions better. I have map dot fingerprint corneal dystrophy and have had two surgeries to each eye. I am temporarily stable but showing some signs that may lead to more surgery. I was misdiagnosed for many years until I found a corneal dystrophy specialist. He is really good and compassionate. If you are anywhere near Boston, I highly recommend him. Micheal Raizman, MD at Opthalmic Consultants of Boston. If you aren’t too far away I know an organization that flys patients to medical care free of charge. The surgeries I have had were all debridement plus use of the excimer laser to clear debris and promote healing. Yes, after all surgeries I had excruciating pain. Dr. Raizman explained the issue with opiates. The cornea is filled with nerves but has virtually no blood supply. So taking oral or IV painkillers will never work on the cornea because there is no blood supply to bring it to the cornea. It wasn’t an issue of withholding opiates because of all the current overreaction to opiate use. Patients in pain need should get opiates if they will help. I do, for another serious illness I have. They help with my other illness but not with the corneas. I researched corneal pain and I believe my doctor is right. But, opiates should work on peripheral pain that doesn’t originate in the cornea. All my peripheral pain was referred pain from the cornea so no help there. There are analgesic drops for surgeries and procedures but they can’t be used for post operative pain as they damage and degrade the cornea with any use other than procedures. Bandage lenses help me some as well as several drops that encourage the cornea to heal, plus antibiotic drops. Regarding bandage lens, they have to be carefully fitted and inserted, then kept moist with whatever drop your doctor recommends. Lubricant drops helped me but check with your doctor first. Also any lubricant drop must be preservative free, usually single use containers. I use Refresh Plus. Same brand ointment helped at night. But , yes, the pain was awful due to all those nerves in the cornea and no blood supply to deliver the opiates. I wish I knew what to say. Oh, it also helps to stay in dark rooms and use dark glasses. My doctor gave me dark glasses that fit over my regular glasses, which helped.Regarding peripheral pain, I saw a neuroopthamologist who confirmed, for me, that all the pain came from the cornea, after a series of simple tests. It was awful. I have taken hydromorphone (dilaudid) with minimal effect. I use self and guided hypnosis which helped some. I am a doctoral clinical psychologist who does hypnosis, so had access to those resources. Depending on where you are, I might know someone, if you want to try that. Basically I had to wait for healing. Did they use the laser as it does shorten healing time? Dr Raizman is one of the worlds experts on dystrophy and the laser. I’d be happy to call him for a referral in your area, if you decide to change doctors. Regarding “sand in the eye” feeling, lubrication helped. My doctor also put silicone punctal plugs in both lower lids. It blocks too rapid drainage of tears, keeping the cornea naturally moister. Sad to say, despite all the advice and my doctor warning me about the pain, it is awful and basically I had to ride it out. Dr Raizman kept a close eye on me and adjusted drops, etc. I am hoping you will write back and let me know what helped and what didn’t. I may also have more information on your peripheral pain once I understand what it is for you. All my best wishes and hopes for a speedier relief from pain. Regards, Rhoda.

Sep 11, 2019 · Map Dot Fingerprint Dystrophy in Eye Conditions

@bobr1040 @lisalucier Hi, this is Rhoda @rckj I have map dot fingerprint corneal dystrophy and have had both good and difficult periods with it. I have a terrific ophthalmologist and surgeon who is a well known specialist in this on the east coast (Massachusetts). How can I be of help? Regards, Rhoda

Jul 8, 2019 · Caregiving: I’m frustrated and exhausted. in Caregivers

@kimspr3 this is Rhoda. @rckj. Glad to hear from you and glad I could help a little. The loss of some of my independence bothers me too and I’m always apologizing or not asking or asking timidly. It’s a tough one. I have some PTSD too, also an ongoing struggle. But things do improve and I am fortunate in my choice of husband! I’m lucky he is a communicator like me. Sometimes making decisions on which way to go on a medical decision is hard but we do have therapeutic help. I highly recommend it. It helps us figure out which way to go next and how to stay emotionally close, despite the obstacles.
Hope to talk again and wishing you all the best, Rhoda @rckj