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Does anyone have experience with Palliative Care?
Chronic Pain | Last Active: May 3 5:06pm | Replies (109)Comment receiving replies
Hello, Ashby1947. I've just now read your messages and realize I have a kindred spirit. You have a lot of different and serious issues you're dealing with in this life of ours. I didn't know there were others who have such a platefull. I, too, have multiple health issues, most of the serious and causing pain or making my life more and more difficult. I've had double vision, in both eyes, for several years. Now, it comes and goes. Never know when it'll hit, so walking/driving can be interesting. I now close one eye to see, which works well but does mess up my periferal vision. I've needed help for such a long time. I only began to get that help when I had a melt down and called Mayo, Jacksonville, They were wonderful and the last 2 years with those doctors and staff have truly saved my life and given me new life. I never would have thought I'd be doing so well today. They undiagnosed MS, Parkinson's, epileptic seizures I've had since age 11, and so much more. They've diagnosed and are treating the real issues and helping me find reasons for each health problem that comes along....and they do keep coming. Because of you, I'm learning about palliative care. I thought mistakenly this was geared for end of life or such care. I need more help than I have, but don't need home health care nursing or personal care. Now, because of your questions and this fantactic Connect with Mayo. Also, since I live alone, there are additional problems. I'm going now for a new round of care with Mayo docs - dermatology, removing some little areas of growths that need to be gone....gastro to find out what's happening, audiology for hearing loss, neuro opthomology for worsening visions, at times blurred or not clear and of course serious dry eye! I think there's a social work dept that can give us guidance in these areas of home help, transportation and such. We'll see what happens. Thank you for your questions and your sharing. I believe we share a lot of the same life issues.....heading to bed. I'm exhausted. Wearing a heart monitor, cute little thing, isn't it? Need to charge the sensor and get to bed soon. Blessings, my new friend. I look forward to hearing about your journey as we travel along. Elizabeth
Replies to "Hello, Ashby1947. I've just now read your messages and realize I have a kindred spirit. You..."
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Hi Elizabeth - Kindred spirits indeed! Thank you so much for sharing. When you said we had a plateful, that really resonated with me. Having a multiplicity of serious health issues presents different problems for us than for people who just have one issue. Not better or worse, just different. Of course since we are aging, there are always new things cropping up. I am so glad that you are learning about palliative care. As i mentioned, I am just beginning to explore it myself. I do not need home care nursing nor personal care, just the support of various disciplines and one medical professional to coordinate my care. As I understand it, that is the essence of palliative care. As we learn more about it, we will have to share. About your diplopia - Tell me more! Mine is the result of tube shunt surgery two years ago for glaucoma. Apparently a muscle got disturbed or out of place. Glaucoma doc is happy because my pressures are great; however, he doesn't have much to say about the diplopia - you know, not his speciality! It is so hard to talk to someone about what it feels like to have double vision and how it affects your life. With all my ailments over the years, the diplopia has had the most profound impact on me. Tell me more about what caused your dbl vision, why yours comes and goes, and how are you coping. How is your vision affected? I have it in my left eye and I cannot see my feet nor my plate of food without the ghosting. I guess I'm fortunate that from eye level and beyond, the diplopia does not affect my vision. I can see TV, but cannot read. My affected eye is painful and blurry at times, also very dry, of course. Any suggestions are welcome! We are fortunate to have access to Mayo JAX. I used to be a hospital administrator, and Mayo is the best! Thank you so much for your contact. You are right, sharing things along the way makes these pesky issues easier to bear. I hope this is a good day for you.! Sue