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Mon, Jul 8 9:39am · 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

Sat, Jul 6 12:21pm · Caregiving: I’m frustrated and exhausted. in Caregivers

@colleenyoung @kimspr3 Hi Kim, Colleen, this is Rhoda @rckj. Kim, how can I be helpful? Happy to and I get the gist of the thread about caretaking? I have been ill over 10 years with Addison’s Disease (adrenal failure).
I have other illnesses that are either caused by the original disease or are just there. Life is tough but there are also wonderful things. Just as I was getting sick I met and then married a wonderful man. He is protective of me and worries, although he doesn’t always say so. I worry about what all this does to him, having watched so many times where I am critically ill. I wrote a thread about taking care of him and doing things that I could do to create joyful times for us. The idea was suggested by another member, @rosemarya . I think the thread is on the post intensive care site around April of this year. I often apologize as if it was somehow the illness or my need for help was my fault. Logically I know that’s not true but logic only goes so far. I’m working on it but it is hard. I think right now I may be only marginally helpful as I’m coming in to this in the middle of the thread. How can I help? Best wishes, Rhoda. @rckj


Thu, Jul 4 3:00pm · Diplopia (Double Vision) Help! in Eye Conditions

@ashby1947 hi it’s Rhoda @rckj. Nice to hear from you. I too believe in a person’s ability to work to help the healing. I think I have to as it’s been a rough ride and sounds like a rough ride for you too. It’s Sue, right? You are doing so much to help yourself and that is incredibly admirable! Not everyone tries and works as hard as you do although I’m not sure I understand why. I have had short periods of hating the fight but I refuse to give up.
Eye conditions are incredibly disorienting. I have corneal dystrophy, which causes degeneration of the cornea rather unpredictably. Multiple surgeries to repair the corneas, may mean transplant at some point but I’ve been lucky so far. Although I don’t look it, I am also very cross eyed and wear very strong prisms in my glasses. Without the prisms, I get what my MD calls ghosting, basically double vision. Very astigmatic and nearsighted. Am I throwing around too many medical terms?! Always worse as the day goes on. Just developed blepharitus which means the eyelash ducts are blocked and need to be treated daily. Maybe 5 to 6 drops or ointments 2 to 3 times a day. Not hard to remember as my eyes remind me with discomfort. Hope I’m not overwhelming you but I also have Addison’s disease (adrenal failure) and must substitute artificial adrenal drugs for the ones I don’t make. Recent pulmonary clots, so blood thinners. My medicine bag looks like a pharmacy!
Many people have it worse and I’m a fighter. I think you are too!
But back to the basic issue. Having had periods of being impaired in one or another eye and having double vision is incredibly disorienting. I sometimes just close my eyes and listen to music, or my MD recommends spotting, basically picking an object, a painting, a spot on the wall and looking at it, using it to help settle down the various fluctuations. Works some of the time.
You are fighting the good fight! I believe it will improve and I will keep you in my thoughts. I would love to stay in touch. Also if this was not what you needed, let me know what would be more helpful. I really want to know how I can help and I won’t be offended, not in my nature.
Demographics as an FYI I’m Rhoda, just turned 60, and am a practicing doctoral licensed clinical psychologist. Married to an amazing guy who is a astrophysicist, whew. He is very supportive. I’m north of you by quite a bit on the east coast.
It takes awhile and practice to feel more confident but you are doing so much to help yourself! You are admirable. Only thing I can think of right now is do you have a support system? I find it hard to lean on people and sometimes try to seem healthier than I am. I am learning how to let people I love who love me, help me. It makes a huge difference and strangely enough makes me feel more independent. All my best wishes and hoping to stay in touch, Rhoda.

Fri, Jun 28 8:35am · Diplopia (Double Vision) Help! in Eye Conditions

@ashby1947. @colleenyoung I am @rckj otherwise known as Rhoda. I’ve been out of the loop on the site for a bit due to exacerbation of my chronic illnesses, including eye problems. After I saw Colleen’s post, I thought maybe I could be helpful. I can tell my story, offer advice, offer what worked and what didn’t, offer support, etc. What would be most helpful to you? Best wishes, Rhoda.

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.