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Off to see the rheumy this morning. Have been making a list of questions since my memory is so wonderful (?!) lately. Hoping and praying he can give me some answers to what the heck went on this last ten days and how to avoid going thru it again! Noting new, and not so new, symptoms. Been noticing my hands are weak, especially my right, which is new. Thought it was from the bruising (had an IV blow out in it) but it's getting worse not better.

Been working on just relaxing and paying attention to me, not letting my 'fair weather' friends get me down! Some people just need to grow up. I also realize most have NO IDEA what this (and other) chronic conditions do to people. And some don't want to know because they're too fearful. What I personally have decided is that my limited energy resources will be dedicated to myself and others who 'get it'.

Don't like using the anti anxiety med, but it does help so I'll use it. Also don't like using too much pain relief, but there again, I'll use it.

Next up, calling an attorney who was recommended to take up the fight with Social Security for me.

Got to figure out the financial end of this new life of mine.

Will check in later.......LOVE knowing you're all out there!!!


3 Replies

Hi Pam, glad you are able to remain positive about yourself and your interaction with others through this difficult time. As you say, lots of people don't "get it" for lots of different reasons, some selfish, but mainly through lack of knowledge I think. But when you're feeling rubbish you don't have the energy to explain. That's why this forum is great - you don't have to explain anything, we all know where you are coming from! More importantly we CARE! Good luck.


Hi Pam,hope all goes well with rheumy,and he can answer all your questions .

Good idea to write what you want to ask,as by time we go in and they start talking everything goes blank.I am always writing things down,i wouldnt remember half of things i want or need to do.

As you say friends ect we dont have the energy to spare on those who dont understand what this illness does to us,you use your energy for you much more worthwhile.

Wishing you luck with Social Security.


I don't think we ever really understand how others are affected by various conditions. If you have the same thing it is easier though. I must admit my friends have been fantastic. They really have helped me. They have done my shopping, driven me to various appointments, cooked for me, brought me vegetables from the allotment and one neighbour even tidied up my front garden.


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