Another day in the neighborhood of a rare disease/autoimmune

[DRunnerchick]

Hi there everyone who can relate!

Had an appointment with my Wizard a couple of weeks ago and was going to post an update but didn’t get it done before my son had surgery. Then Mum had issues…then more… then I started a lovely flare. I believe I now have costochondritis with the flare.

The Wizard already increased some meds during our visit. So far, so good with that one. My “200 day headache” has not returned, nor have my migraines worsened, now that I am on the Aimovig. But, my stiffness has worsened and spread. It doesn’t seem to get better after I get up in the morning either. More spasms too, starting from the moment I wake up (I never have them when I sleep).

So, I’ve added a bunch of ibuprofen to my daily menu to see if I can get this to calm down. Now, if anyone has any Cracker Jack tips for getting a recalcitrant 81 year old to listen to her doctor etc…

Be excellent to one another. I hope y’all are still staying afloat. Hope floats! Happy Spring🌸🌷🍀🐇🐥

Over and out—DRunnerchick🏃🏽‍♀️✨😘🤷‍♀️🙏🏼🇺🇦

[misty14]

There's always something extra we have to cope with drunnerchick. im so pleased at your progress but so sorry at your flare. Not surprising with family problems. Do hope your son's surgery was successful and your mum gets the help she needs. I do understand that parents in their 80's do have minds of their own!. It makes it hard and stressful for you.So glad the Wizard is still working his magic for you and the 200 day headache is a symptom of the past. Long may it continue and hurrah as you say. Spring is on its way. Take Care. Xx🌻❤🌻🤞🌷❤

[DRunnerchick in reply to misty14]

Thanks misty14. My mum is down to 84lbs/6st/~38kg and has severe vertebral compression fractures in t-spine and L-spine. She also has some other pressing problems and needs to quit smoking (“I’m down to 6 cigs/day” except last week it was 1/day and she told another family member something else 😣). My brothers are in denial. My attorney brother, aka the Golden Child, has POA, but lacks initiative and doesn’t believe my take on medical predictions (btw, I am spot on, as I’m sure most of you are as well!). Up until recently, my mum hadn’t taken any meds and had outlived two husbands and survived polio. She’s tough! She has an I.Q. Over 150 and right now she’s in competition for the stupidest person award!

My son is recovering well from his surgery. Everything went well. We are very grateful!

I hope you are doing well. I hope spring washes away the lingering aches of winter.May we all spring into good health. ✨

[MrsMarigold in reply to DRunnerchick]

Hi DRchick. What about social services for your mom? That’s not required for POA I think? 84 pounds is huge concern. Glad your son is doing well! Titters

[DRunnerchick in reply to MrsMarigold]

There isn’t a lot is the way of social services where she lives. She does have friends that help somewhat. She doesn’t like people in he space. She’s stubborn and probably a bit agoraphobic. I’m sure she has anxiety. Prior to the pandemic, she was an active volunteer with over 6 or 7K volunteer hours at her hospital (the one my stepdad retired from) and handled everything. She was the guild president, played Bunco at her clubhouse etc. My son does live nearby but if she won’t make herself food, or “forgets” to eat, what then? I just don’t know. Still trying to get the real story. I don’t believe anything she says anymore. I pass it to my son and once he can drive, he can check it out and perhaps do something or at least give me good intel before he returns to work in 3 more weeks.Thanks for the suggestion. I will pass it to my son and see if there’s something he can find for her. Maybe Meals on Wheels or something would be something that would be both food and visitor. 🤷‍♀️D🏃🏽‍♀️

[misty14 in reply to DRunnerchick]

Im so sorry drunnerchick your having to cope with so much with your mum's poor health. I do hope your brother's step up as you need breaks and things improve for you all. Ive just sorted pain appts for end april and begin june so have a plan to get me thru. It helps having them to hang onto.

TAKE CARE and hope spring brings better times for us all. Xx🏃‍♀️💕🏃‍♀️💕

[DRunnerchick in reply to misty14]

My son is usually the touch point for Mum, as he lives in her area. I live on the other end of the state and can’t travel that far and rely on my own self to stay together. My other brother lives south of her in California and does come up to “Mommy’s Shangri-la” from time to time, but it’s usually for a break in between court dates, not to actually help. She does have a friend that goes grocery shopping for her. It isn’t a matter of her not having groceries.

I hope your pain appointment goes well and comes up with a long term plan that successful. Pain management is underrated, yet it feeds into so many aspects of our conditions. I’ve been listening to the World Migraine Summit lectures happening over the last week and hearing about new pain management options. Very interesting stuff. Hang in there. Relief is coming.✨

D🏃🏽‍♀️

[misty14 in reply to DRunnerchick]

Thanx drunnerchick for your hopeful post. I couldnt agree with you more about pain and how its regarded. You hang in there too and 🤞for improvements for you and your mum. Xx🏃‍♀️❤🌻🤞❤🙏🏃‍♀️