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Does anyone have experience with Palliative Care?

Chronic Pain | Last Active: Jul 29 9:27am | Replies (154)

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@ess77

Hello, Sue. I read your message and as I'm writing, I have a smile on my face, just took a really deep breath, shoulders went down a
'foot'!, neck and head still hurt but will probably hurt less as I go along. It 5 PM. I came downstairs an hour ago, put a Publix Aprons ready to heat chicken breast stufffed w/spinach and gouda cheese. I love these prepared meals from them. I can eat real, 'home-made' food w/o preservatives and soo many additives...all I do it stick it in it's pan in my new covection oven, set and wait. What a wonderful way to 'cook'. Either that or Publix deli stuff and/or frozen Healthy Choice or whatever...with no preservatives. I eat yogurt and fruit w/granola parfaits for breakfast, and have an Atkins smoothie. This is pretty much what I eat these days. The yogurt and smoothies help my tummy and relux. And, give me good calcium. I haven't had milk products other than that due to intolerance. The beginning of this horrid year, I set up a little special area for myself in my 'kitty' room, 3rd bedroom w/kitty litter. I have a small fridge for diet coke, bottled water, electrolyte water, Atkins smoothies, yogurt, white grape juice, iced tea I get from Publix in quart bottles I can lift....arthritis in hands, wrist, fingers, everywhere so i can't lift anything as heavy as a gallon of water. I've figured out lots of ways to accomplish what I need to do, but I do get so frustrated and angry that I can't do what I want, when and how I want. I moved fast and with real purpose all my life. What a change!!! BTW: I was in retirement administration for 15+ years, until I just couldn't deal with the emotional strains of 24/7 responsibility for so many lives of the older residents and their families. So, I left, had emergency abdominal surgery for a large benign tumor, opened a shop in a residential area, selling home decor, stationery, greeting cards, gifts of all sorts, collectibles and whatever else I thought fun. I loved it, had a ball and almost killed myself with the work. But, that's what I did....throughout my life....Well, you asked about the double vision. I was diagnosed with Myasthenia Gravis and that was considered the cause. It wasn't/isn't. I don't have it...after 8+ years of the diagnosis. Why the dilopia? Don't know. So far, no one has given me a reason. Since I had eyelid surgery at Mayo to tighten the lids so I can again open my eyes, all the way, I do see much better and the surgery was totally successful. I still have dilopia, but not as often. Before, it was always and then most of the time. Now, for the last year, it comes and goes on a whim. No idea what brings it on, unless it's related to being tired, or ill or mechanical in some way. Now, my sight is getting worse at times. Blurred, writing or sight just off kilter if that makes sense? Not quite double, but off....I can't see distance clearly any more, can't see street signs. I often can't read with my reading glasses, or read on the computer. Now, I see ok with reading glasses, but after a bit on the computer, it'll get blurred or unclear. Also, my dry eyes get really seriouly bad at times. That interferes with sight as well. I use Refresh as needed, Xiidra drops 2X daily. They help some. So, since the eyes are worsening, I'm seeing Mayo neuro opthomologist next week. This coming week I see cardiology for additional work-ups...bldwk, ekg, echo, meeting w/doc. I'm wearing a heart moniter for a month, since I was in Mayo hospital a couple weeks ago for thyroid mess and probably heart as well. Thyroid is better controlled now with less synthroid, I was over medicated.Amazing how many symptoms are now gone or controlled by just that adjustment! Then, the following week I see the neuro opthomologist. I do hope he'll find an answer of some kind. It'd be lovely to get some real relief from the dry eye as it affects my life much of the time. If he can determine the cause for dilopia, wouldn't that be lovely. I think 'coke bottle' glasses are used for that and help us focus better, see only one of anything. Oh, I do see 2 at all levels. Watching tv is fun! I have 2 screens, 2 of everything in blocks, almost side by side. That's the way I see the world when it's bad. Now, I just looked at this message!!! I can't write this long!!! Sorry, I got started and guess with you I must remind myself to stop. It does feel wonderful to share these personal, real parts of my life with someone I'm sure really understands what I'm saying. Understands what I'm feeling. Another deep breath....thanks for being on this Mayo site, Sue. Thanks for sharing. You are a gift to me. I hope I can return the favor. Blessings in this journey. Elizabeth

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Replies to "Hello, Sue. I read your message and as I'm writing, I have a smile on my..."

Sue, BTW: I see only Mayo doctors now. I have a PCP whose w/Baptist system, seen him for 20+ years. I very much want to change to a Mayo PCP, but can't since I have Medicare. It kills me to have to include the Baptist system and it's a struggle to keep him up to date, etc. I truly trust my Mayo doctors, the staff, and all the folks there, that they actually have my best at heart. I trust they will find answers and share with me what my body is up to. They have a real interest in finding answers. Wow! Good evening.....be well.

Sounds good. Need prepared dinners that taste good and yet meet dietary restrictions. Have never heard of Publix. Are they on line?

Sue, I didn't finish a thought about my 3rd bedroom. I set up a little fridge, coffee maker and coffee related stuff, microwave. Just so I can have those things available upstairs, when I can't for whatever reason go downstairs. i.e. after hospital, after fall, just don't feel well, fatigued or whatever. I have a recliner in my bedroom, TV, set up for comfort as a sitting room as well as bedroom. Since I live alone, this set-up works very well for me. I need help from housekeeper or someone to get things upstairs for the fridge, but I'm working it out. Hopefully, this will keep me in this condo for a good bit longer, since I have 14 steps to get to the bedrooms or down to the kitchen. Blessings...Elizabeth

Hi Elizabeth - I agree with the frustration that Mayo PCP doesn't accept Medicare pts. Oh well. My PCP was trained at Mayo, so that is good. I see my PCP on Wednesday and have made a list of my medical issues. I plan to ask for a referral to Mayo Pall Care. Publix is great for prepared meals. Unfortunately, I cannot eat fruit, veggies, or fiber (not to mention fun things like nuts), so I am limited in my diet. Some day I'm going to chuck it all and have a big salad. I had many digestive issues in 2012-13, and while they never figured out what was wrong with me, that was the determination. My PCP at the time, in Michigan, also said to take Miralax every day. I'm down to 1//2 the regular dose, but whatever - it works. I was hospitalized twice with an obstructed bowel. Talk about the pain scale - those little episodes tipped in at 11 or 12! Anyway, I've been living on Publix chicken soups for the past several weeks. I don't cook much....

I do have prism glasses to correct my diplopia. I remember coke bottle glasses, but these are in regular frames and are not an issue. They work for seeing the computer and what little reading I do. I use Refresh Mega 3 and Retaine MGD 8 - 10 times/day. I also use an eye mask that I heat up almost daily. It's supposed to help the meibomian glands. I think my dry eye syndrome has progressed to the point where not much helps; however, if feels good to lie down with it on.

You're in Jacksonville? We moved to Mandarin from Michigan in 2015. We like it here very much, and I love the warmth. Walking on snow and ice was just too scary to me; although, at the time, I didn't have all my current issues. Yes Elizabeth, I am very much enjoying getting to know you and appreciate being able to share all the chaos in my mind. Dealing with all these issues is sometimes overwhelming, and talking with someone who understands, it great! I hope you're having a good day. Sue