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What's outside of your picture window today?
Just Want to Talk | Last Active: 6 days ago | Replies (2396)Comment receiving replies
Hello, Lori, Somehow I missed your trip to Rochester. Is this a regular type visit? Sounds like you're having procedures and action taken. I like that you're getting the caring, watchful eyes of the Rochester staff, but don't want to see you experiencing 'issues'. Only issues allowed are which outfit to wear to make your husband's eyes light up. What a blessing for you, Lori, to have him.....I think! (as you all say, 'Just kidding' or LOL.)
Be your positive self, my friend. I'm learning from you and others who've worked so hard to get all this stuff under control in your heads. In fact, I just hung up from chatting with my son. He called and sounded so good, much less stressed. This last hospital visit was tough and frightening, but it helped him I think. His body was so far out of whack, the meds and constant fluids he got helped immensely. And, Lori, I just got a repeat call from him sounding quite stressed after getting a confusing message from a home health care person. It's that roller -coaster again. He gets himself in a good place mentally and physically, then a little something topples the hard work setting him back a bit. Like Laura and me and all of us, 2 steps forward, 3 steps back. Sometimes 4+ back. It's contagious, too! I'm now agitated after being so calm and pleased with his progress....Geez Louise! Time to reset my brain...
You do well, my friend. Get rest and be well. You're getting all tuned up....something we all need occasionally. Kinda need that now, so good for massage day. It's been soooo long since I had my regular massages. It's time.
Heading out later to Mayo for the first of many, and other goodies in that dept. I'm thrilled...a very good day for a very good thing to do for myself. Then, tomorrow I go to the Mayo Fibromyalgia Clinic for a 2 day educational experience. I'll finally get all the skinny on Fibro, the facts 'mam. just the facts' as the Dragnet Joe Friday used to say. Remember that show?
The firbro class is informative, learning what's now known and how to handle this encompassing illness. Interferes in every area of the body. 2 intense days, 8:30-4...6; apart, wearing masks all day, no eating in class...horrors! because they want masks up. But, lots of flexibility to get up and stand, or move which is so important for fibro folks. So, off we go on another adventure to Mayo Adventureland!
I'm not tripping. I'm tired for no sleep due to prednisone. Better last night, but still not settled. It'll take a few days to calm myself. I began yesterday to follow Sue's advice and took a quiet time -breather in the middle of the afternoon. Intentionally. I sat in the recliner, after having moved furniture Sunday to re-balance the den, had a cup of tea and a glass of iced greed tea, one of the goodies I give me every day, but so good on southern summer days. Put my feet up, head back, and enjoyed my bird and squirrel and lizard friends. Talk about calming. It was wonderful. I sat and smiled for over an hour, enjoying the antics. Rejuvenating. Thanks, Sue. That's part of a new afternoon schedule for me.
Enjoy your ride home and back to your sanctuary. You will replenish your body and spirit on your lake, forests and with your nature friends.
Be well, be blessed and don't be good.
Elizabeth
Replies to "Hello, Lori, Somehow I missed your trip to Rochester. Is this a regular type visit? Sounds..."
@ess77 You’re remarkable…you and Laurie, @artist01 Both of you dear ladies have plates full of trouble and yet you think about all of us in Connect too! We’re all pretty blessed to have you too!
Thank you for the good wishes. I’m fine. The visit to Mayo was for the 2nd re-birth day of my bone marrow transplant. Had a bone marrow biopsy to make sure I’m still 100 %donor DNA and zero %me! We don’t want any of my old cells remaining. They were a troubled lot. Haha.
A zillion vials of blood to check everything! And for the 1st time in 2.5 years all but one number is right down the middle! Happy dance!!
But with that comes a new reduction in my meds which is where I derailed 1.5 years ago so it’s with trepidation that I start a taper off an immunosuppressant.
I will be ecstatic if all goes well because then I can also halt all the antibiotics(penicillin and bactrim), anti fungal, antiviral and 3 other meds. Also had 6 more vaccines today, bringing me to a grand total of 25 vaccinations since last October! I’m almost an adult!! Giggle…only one more series to go in a couple months!! Whoot! I am wiped out though. Side effects from yesterday which is rare! Had to postpone the shots until this morning at 8. The nurse who was to give me the vaccinations took one look at me and said, “Honey there is no way we’re doing this today…” and handed me an emesis bucket!! Cuz I was in a tailspin this time from the anesthesia of the procedure in the appointment before hers. When I’d gone to the clinic in the morning, I literally sprinted up the stairs. When I returned 3 hours later, I was in a wheel chair riding like a queen! Hahah Good thing my husband is still Mr Buff and can push that wheelchair with me in it!! He truly has been my rock through the past 2.5 years of illness and recovery…and the 47 years we’ve been married.
I was feeling so relieved and excited for you and Rob…and then gosh, not again!! But you know, Elizabeth he now has had some good moments and maybe they will grow in numbers with the steady care both you and he are getting. I know you’re able to cope so well with setbacks and moving forward again. But it gets exhausting and takes a toll.
I read about your diagnosis and I so hope the new treatment helps you without side effects.
Mm I also love iced green tea. Been treating myself to Matcha tea and also, a blend of lavender and blueberry iced!! It’s so refreshing and relaxing!
Ok I’m going to post a couple of photos of Mayo Rochester for those not familiar with the campus. It’s so beautiful.
Me, 2 years ago wandering the empty foyers at night. It was a victory lap as I pushed my wheelchair back to the clinic with my husband and ran up the flight of stairs by the Chihuly glass ‘singing’ the theme from Rocky
The maintenance guy was laughing with us! Pretty cool.
There is a foyer with Chihuly glasswork suspended from the ceiling. The halls are marble and so gorgeous. It’s my home away from home.
A pic of the Subway that connects most of the hotels and other businesses to the Clinic.
The garden in front of Mayo with statues of the Mayo Brothers.
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Elizabeth- I'm so glad that helped you.
Next, let's figure out a strategy for re-entering you after stressful calls from your son, so all your healing strategies can succeed. What makes you feel the most peaceful?
Sue