Trajectory....upwards~!

[Grammy80]

So many of you wrote such encouraging and wise words....the last few days have been appointments to get to and people coming in. Everything seems to be such a 'big deal' and when I get back home and stretch out...I fall asleep for a few hours.

I think 'I'm such a big deal and so tough and capable' and then.... I get out in foreign surroundings and I'm not so confident...I really want to get a cart and walk around a store and find myself pooping out and feeling like each leg weighs 100 pounds!!! I'm feeling pain and soreness I hadn't felt...?? is it because I'm not as active and tired?? or do many people with GCA develop PMR?? I keep a notepad in my kitchen and write questions for my doctor.

It seems we all have to establish priorities...and be flexible, for sure. When I was at the Dr yesterday he advised I had deve!!loped an ulcer on my lower leg. I had felt the moisture but couldn't really see what was going on. I even pulled out my cell phone and took some pictures but couldn't see clearly. So..compression hose, elevation and he is making an appointment for me with a wound clinic, peripheral vascular disease.

As I go on...I really think my priority now has to be focusing on a healthy mental attitude so that I can deal with 'the physical.' I see my rheumatologist on the 21st...

I talked with my family last night...the cottage saga goes on...??? I do know it is impossible to please everyone...I wish I was tough enough crust to say @!@%^* "I'm going to please myself"....and I may get there. Right now, I'm going to be like Scarlett O'Hara in Gone with the Wind..."I'll think about that tomorrow." (... maybe I will just stay home)

I'm a work in progress ...but I see sunshine!! It is so wonderful to be able to 'talk' with all of you who really 'get it'...walk the walk with me and all the others in this 'incredible army'......👬👬👬👬👬👬👬👬👬👬👬 You're amazing~~

xo Marilyn

[GOOD_GRIEF]

Hey Marilyn:

I've written this many times on this site. My grandma always said "No matter what you do, someone isn't going to like it. That someone might as well not be you."

You might want to get that ulcer under under control before you make any decisions about letting a cottage. You're going to want your medical team to see that through to resolution before you go galavanting.

Once I got the go ahead from the medical team,if it was me, I'd be looking into a small hotel or rooming house or B&B. I think having some new folks around for a chat would be a different experience. There'd also be some staff around if I needed a hand.

But you should absolutely do what you want to do, as long as your medical team agrees that it would be OK.

I hope you've gone to sleep by now...It's midnight in NYC and I'm headed for the sheets.

Have a good night...

[Grammy80 in reply to GOOD_GRIEF]

Well....believe it or not...I was still up when you wrote this!!! I live in Maine and we share the time zone.

I was so exhaused yesterday when I stretched out to elevate my leg, I slept for hours and didn't wake until after six pm.

I sure like your Grandma's advice....why should it be me? Right on!! I may just become a fiesty, cat loving old lady~with attitude!

There is no doubt I have to get this ulcer behind me....especially since one of the concerns in going to Canada...is the only treatment I can get as a US citizen, is emergency room treatment. After galavanting yesterday....I was exhausted and got a window into just how much I had to pace myself.

Thanks so very much and have a good day!!! & thanks for taking the time.

[scats]

It's not us that's amazing, you sound pretty amazing yourself, all strength to you.

I love your use of the emoji to represent all of us standing together, it is just how I feel about it too. Good luck to you I hope you do get what you want.

👩🏻‍🤝‍🧑🏼👩🏻‍🤝‍🧑🏽👩🏻‍🤝‍🧑🏾👩🏻‍🤝‍🧑🏿👬👨🏻‍🤝‍👨🏻👨🏼‍🤝‍👨🏻👨🏼‍🤝‍👨🏼👨🏽‍🤝‍👨🏻👨🏽‍🤝‍👨🏼👨🏽‍🤝‍👨🏽👨🏾‍🤝‍👨🏻👩🏼‍🤝‍🧑🏿👩🏽‍🤝‍🧑🏻👩🏽‍🤝‍🧑🏼👩🏽‍🤝‍🧑🏽

[Grammy80 in reply to scats]

That is an impressive group you have with you...love it!!! Sometimes what I want isn't what I need...but I'm sure getting a better idea of what I would like!!! Thanks so much~~🥰

[SheffieldJane]

Hi Marilyn aka Grammy80in. Thanks for the update, I often find myself thinking of you. You are a very impactful person in a positive way. It does sound like PMR might have joined the party doesn’t it and then you will be feeling exhausted at this assault on your system.

I think that there are different ways of being strong and yours is admirable. The ulcer is a blow and those compression hose are so difficult to get on. I can barely manage flight socks - I wonder if there is some kind of aid on the market?

Scarlett also says “ after all tomorrow is another day”. Something we all have to say when we have a challenging one. She also never ever gave up. Gone with the Wind was one of my favourite books ( the dated attitude to race not withstanding).

I hope you do say @!@%^* sometimes we have to. You have earned the right to do as you want. Stand firm. If I always abide by what my family says, I think that I would actually disappear and that is not really what they want. We need to be wise for them too.

Take great care Marilyn. Sending love and hugs. X Jane 🌷🌷🌷

[PMRpro Ambassador in reply to SheffieldJane]

There are many aids on the market - from something resembling a plastic bag that allows the stocking leg to slide over the foot through frames to stretch the stocking so your foot goes in more easily to all singing all dancing mechanical aids!

livingmadeeasy.org.uk/cloth...

[SheffieldJane in reply to PMRpro]

I love solutions! Thank you for posting!

[Thelmarina in reply to SheffieldJane]

So agree. Modern technology is absolutely amazing! If we have to have these conditions now is the time to have them! People must have so suffered in the past..

[Grammy80 in reply to PMRpro]

Thanks....there were certainly more aids on that site than I've ever seen~!! I think the coated wire ones that are more open will work for me.....for sure! Thanks again~!!!

[Grammy80 in reply to SheffieldJane]

Pow! right on the button, Jane...always wise, kind and uplifting too. I've had two hip surgeries, 20 years ago and 3 years ago...so I have what I call my 'sock puter-oner' and use it every day for my left foot...it is sort of like pvc cut in half with rope pulls....there is another type I a going to have to get tomorrow because my right ankle is fused and cannot delicately point, haha, so the pvc doesn't work....I'm sure maybe even Amazon has one!!

....yes,after all tomorrow is another day and in a few tomorrows...a reevaluation may be required. Have a good day..love to you too, xo, Marilyn🌸

[Thelmarina]

You are amazing! 🌺

[Grammy80 in reply to Thelmarina]

🌸🌸Thanks so much Thelmarina....that means a lot especially when I don't feel amazing~!xo