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Posts (60)

Sat, Apr 27 1:59pm · Map Dot Fingerprint Dystrophy in Eye Conditions

@lisalucier hi to all. I am new to this discussion and group but have been involved in other groups on this site. I have map dot fingerprint which has been relatively quiet for a few years until recently. I have other major medical problems, which makes this feel overwhelming. Currently treated with drops, ointments and bandage lenses. I’ve had PTK surgery a few times to each eye but we are not there yet. I have a great medical team for the last 15 years after years of misdiagnosis and am fortunate and grateful to have the current team. I guess I am hoping to share experiences with others who have this or similar eye disorders. In the other groups on this site, I have found extraordinary comfort and support and I hope I can also offer my support to others. Best wishes to all. Rhoda

Sat, Apr 27 1:36pm · Low Vision: Let's share about coping day to day in Eye Conditions

@colleenyoung hi Colleen, thanks for the advice to join this group. I am new to this group but have been participating with other groups on this site. I have corneal dystrophy, both Fuchs which appears to be in long term remission and anterior basement membrane corneal dystrophy/map dot fingerprint, which is most definitely not in remission. I have multiple medical problems which are life threatening and greatly impact the quality of my life. The dystrophy had been under reasonable control until recently, and as is typical of this type, destabilized rapidly. With all the other medical problems, I feel tired, discouraged and frustrated. I have excellent medical treatment and am fortunate in that aspect. But my home is beginning to feel like an extension of a hospital with all the equipment and prescriptions. Both eyes are currently being treated with various drops and ointments as well as bandage lenses. I am also quite astigmatic, near sighted and I have strabismus. My vision varies, sometimes blurry, light sensitive some double vision, etc. I have to be careful not to hurt myself due to low vision. I don’t tell people about my eye problems because I have a number of other medical problems which are more obvious and I don’t want my life to revolve around all these medical issues. When the dystrophy flared up a few days ago, I feel like I’m revisiting frustration and a feeling of being overwhelmed. I would so like my life not to revolve around medical issues! Any feedback or sharing of experiences would be great. I thank all of you in advance for reading my story and any responses. Rhoda.

Sat, Apr 27 12:52pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@colleenyoung thank you for the links to vision related issues! As I suspected, my corneas have begun to destabilize. No surgery yet, just watchful waiting and supportive treatment. Various drops and ointments and bandage lenses. As usual, I always get the warning that this could, at some point, progress to transplant. It all just feels like too much. I will connect to the low vision and the dystrophy groups on the vision site. These support sites have been of such help to me. Thank you again. Rhoda

Fri, Apr 26 10:59am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@rosemarya and @colleenyoung hi Rosemary and Colleen. A bit scared right now. I have a congenital corneal problem called corneal dystrophy. I’ve had multiple laser surgeries as my corneas won’t heal on their own and can spontaneously tear and need repair. They have been ok for a while but today are showing signs of deterioration. Off to the corneal specialist. But I haven’t been on Coumadin for this problem before. Will tell ophthalmic surgeon today. Surgery wouldn’t be right away any way. But very anxious. Getting advice from the Coumadin/Warfarin team. Not much else to do except wait and see what they say. I seem to defy the unwritten rule of only one genetic disease at a time! This practice is really great and have saved my vision numerous times. Just really anxious. Hoping for the best for me and all of us.

Mon, Apr 22 7:56am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@rosemarya Rosemary, so nice to hear from you! I’ve been discouraged lately due to hospital admissions and ER visits. Sometimes it’s hard to remember a life outside the hospital but I’m trying to! I also love the flowers and our vegetable garden. Watching the world through our solarium windows. I especially love the tulips and our all too brief lilac season. Physical therapy is working with me to get me outside more. I agree with them and you that it would be healing. So glad you are enjoying your garden and your good memories. I need to do more of that. I feel claustrophobic indoors but need to build strength to get outside more. Well worth doing! Coming up soon are the tulips, lilacs, azaleas, rhododendrons, and a small rose arbor. I’m hoping and working to get outside for all of those flowers. We have a lot of space, some planted some just growing. We are surrounded by a wildlife preserve so they can’t build anything nearby. It’s so beautiful, especially at sunrise and sunset. Thanks for reminding me of all these good things that bring back memories and create new ones. Enjoy your flowers! Hope to stay in touch. All my best wishes, Rhoda.

Tue, Apr 2 7:55am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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.

Thu, Mar 28 2:33am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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!

Thu, Mar 28 2:01am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@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.