Rheumatology visit, Monday.....BIG taper 😨😱

[Grammy80]

Thank you all for the support. Those virtual hugs feel great!!! It is Tuesday night in Indiana.

Yesterday was such a full day: rheumy in the am, vote in our election, and primary care physician in the pm as a follow-up from the hospital. Finally, today, I am at the computer a bit. When we got home, sleep was all I could think of.

When I went to the rheumatologist yesterday, Monday, I was determined to taper by no more than 10mg. Well, so much for that! After he looked at my wet and red ankle, which wasn't worse than on Saturday, he said he felt it necessary to cut by 20mg, and he wanted to see me in a week. If I have any headache or other issues, I am to add 10mg and stay on that. Stop the Actemra. He also extended the antibiotic for another week. Hopefully, I'll be more comfortable with this taper when I've been on it for 3-4 days.

I thought a lot about it the day and night before and decided that if I had to jeopardize my vision to beat the cellulitis, I would do it. How do you fight infection when you're filling your body with immunosuppressants plus Actemra? This morning I took just 40mg...never thought I would say just 40mg! I can only describe how I feel as a bit strange...tired and a bit spacey. After eating breakfast, I slept in a chair for two hours. Today, I had a home helper for four hours to prepare and freeze meals that are Parkinson's friendly and foods I know my husband likes. She'll be back on Friday.

My husband marked the red area on my ankle with a permanent marker so I could see if it went over today's line or began to shrink. That is the main reason I followed up with my primary care; can't beat confirmation that all is well!! With Parkinson's, you don't blink as much, and my dry eyes were getting like the Sahara! Also, my two Rx eye drops have been neglected, so today, I developed a system to hold me accountable. I see the neuro-opthalmologist on November 4 and look forward to that.

Then I'll be ready to coast for a while....that would work for me. All the support is SO appreciated, 🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑 You are the best~!💞💞

[VeeWat]

so glad you are getting all the help you need right now with doctors and home help. I’m pulling for you.

Love

Vee

[Grammy80 in reply to VeeWat]

Thanks Vee!💞

[sondya]

Best of luck in your elections. We are watching nervously.

[Grammy80 in reply to sondya]

Oh, Sondya.....I am very nervous, very. The race is so close and will have worldwide ramifications. I've lived long enough to remember when this country did represent the Constitution, imperfect,yes, but always a dependable ally. I'll be on the edge of my seat💞

[Bcol]

Fingers crossed Grammy that you get to go that "ready to coast for a while". As always best wishes and lots of hugs. 🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂.

[Grammy80 in reply to Bcol]

🫂🫂🤗 💞

[123-go]

So good to hear from you, Grammy. I love the way you always have a plan for both health and home affairs - that is keeping you positive. Your home help for meals sounds a gem. Thank you for keeping us informed. 💕🥰

[Grammy80 in reply to 123-go]

Where would I be without all of you......I shudder!!! 💞

[powerwalk]

🌷 best wishes. Here's to coasting!!

[DorsetLady PMRGCAuk volunteer]

hi,

Best laid plans and all that, but you have to follow what he says, so hopefully the decrease helps the cellulitis and doesn’t rock the boat GCA wise.

Thanks to husband, hope you can see how well the leg is improving and that boosts morale.

All the best….🌸

[Grammy80 in reply to DorsetLady]

,..... best-laid plans etc. My vision is sharper today -20mg, and that is exciting. So far, so good, and I know if I'm good on the fourth to fifth day, the new dosage should settle in. I'm no worse, though the leg leaked a lot last night. I can remember years ago, my ankles looked like an elephant's. Now, they remind me of another famous Marilyn...deceased movie star. 😅🤣Similarity ends at the ankle, they are so thin. Go figure? x💞

[PMRpro Ambassador]

All the best ...

[Grammy80 in reply to PMRpro]

Thanks PMRpro, I'll keep my eye on it..and it seems contained although it leaks a lot...between the loo and the leg...I should look like a prune in no time. I hope you are doing well. x💞

[123-go in reply to Grammy80]

I love prunes 😉.

[Grammy80 in reply to 123-go]

Lucky for me, I'd say~!🤣😅💞

[Koalajane]

all my best wishes to you. You would have made a great President x

[Grammy80 in reply to Koalajane]

...fingers crossed for the world on this election. xx💞

[1988jtb]

Thank you for all your sharing- you are a strength to us all. 🩷🩷🩷

[Grammy80]

I get my strength from two places.....and one of them is right here💞🤗

[Moaningxcat]

Hi Grammy, I hope this taper is successful so the antibiotics can do their thing and beat the cellulitis! I’m happy to see that you have some help with meal preparation. Your positivity is an inspiration. I hope you get to coast very soon. Here’s to you!!🫶🤗

[Grammy80 in reply to Moaningxcat]

💞🤗 I noticed today that my vision is sharper....I'll take that! 60mg a day for three months was making it fuzzy!! Coasting 101~!💞

[HeronNS]

Once you've got the cellulitis under control or beaten, here's some interesting info about music helping Parkinsons patients:

cbc.ca/news/canada/prince-e...

cbc.ca/listen/live-radio/1-...

[Highlandtiger in reply to HeronNS]

Interesting. Our local theatre runs weekly dance classes for Parkinson's patients.

[Nextoneplease]

Sending you hugs Grammy 🤗🤗

You’re an absolute inspiration! I wonder where you found your home help/ cook? Here most helps just make sandwiches or heat up frozen meals 🤷‍♀️

Keep positive and keep us in touch xx

[Grammy80 in reply to Nextoneplease]

I'll bet the price is better in the UK. I had this agency when I had shoulder replacement surgery last year. Most of our health insurance in the States will not pay for home health assistance of any kind. The minimum is three hours at $26.00 per hour, this is one of the least expensive. I've had good fortune with the girls. Right now I have her eight hours a week. Who knows, in time, it may be more or less. Some choices are made for us.

Medicare for seniors here will not pay them unless they meet specific guidelines and the agencies don't want to meet them. Some folks qualify for state assistance based on income; most agencies are paid by state welfare ( I'm happy they get the help). The agencies want those clients and bill the state $40 - $50 per hour. Our system is broken for middle-income and poor. I'm not a cynic, just a realist...$$$ talks...and it isn't like we have an endless supply. It is sad.💞

[Nextoneplease]

Actually it’s not so very different in the UK Grammy, I’m sorry to say. It would be difficult to find someone to actually cook, and the private cost would be in the area you quote. Most state services, such as they are, only warm up food or make toast etc. They’re timed in quarter of an hour slots, so do whatever’s quickest. I know, I used to manage a state agency team, and also employed a private one to help with my mum while I did so!

For context, I’ve just got a new cleaner. She’s really excellent but costs £20 an hour (in the relatively affluent south of England) xx

[Grammy80 in reply to Nextoneplease]

The woman who cleans is $100 USD ~~she comes in with the vacuum suction and tank strapped to her back and is waving good-bye in almost three hours; great job. I'd say it works out pretty much the same.💞

[Pixix]

More hugs…& let’s hope you get to coasting stage, instead of rollercoasting stage!! S xx

[Grammy80 in reply to Pixix]

Very clever.....you can tell I'm roller coasting since it took me 7 days~!!! Maybe just coasting tomorrow~!💞