notme
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  • Nope. A muscle biopsy was suggested at a point when I was going through a lot of imaging and testing and I was really, really tired of it all. I railed at the Dr's that if it wasn't going to change their treatment plan, I wasn't interested in the test. It's probably led to a slowing of diagnostic procedures and I'm cool with that.

    I'm both better and worse at this point. The inflammatory arthritic issues are somewhat stabilised, I flare a lot and painfully, but still very annoying and progressive. The hand and foot stuff that defies definition continue their course. I bounce between ignoring it all to being deathly curious to getting a definitive answer and leaving it be. I try to stick with the axiom that if it's there, stuff will become obvious over time. Basically, I'm working on getting on with my life as it's being redefined.
    I've said it before and I'll say it again, you're a saint. In the midst of another pointless panic attack over fasics and hopped on to see the posts you bumped. I don't know if it was timing or an answer to my annoying prayers, but I appreciate it regardless. Sending big hugs your way!
    Hi notme. Figured I'd drop you a note here to say Hi. Hi!

    I've posted parts of my story in various threads on the DIHALS forum, and as you know at this stage I know I don't. I am on private disability insurance (salary continuance) at this stage and not working. All of which sounds much more dramatic than it probably actually is, except to say that what I'm dealing with is chronic and progressive. Oh well. But it seems it's a "die with" not "die from" set of conditions.

    In any case, thought I'd make personal contact. Hope all is well.

    Jenn
    Hey - just wanna give you some props for the great work you do here. You're super helpful and caring, and you have lots of knowledge! A real asset
    I don't text. Fingers don't work. And I'm terrible on the phone! I write well though. I'll pm you my email address. You'd better take care of yourself Patty! I mean it! :)
    I'm good Patty! Do you have a FB account? I spend most of my time at a couple groups there. A lot of the same people are there. Who is Jer pray tell? I'm okay and eating. I'm just small and always have been. I'm holding my weight okay. Congestive heart failure isn't good my dear! I'm glad you found that out though and are treating it! Di is having a rough time with life and her kids and all. She is strong though and has a strong faith. I hope something good happens for her. And you too. Love you Patty! Come to FaceBook!
    Hi Patty. Thanks for asking about me- i got the message. I hope you are doing well.
    I sent you a little something more, Patty. Figured there would be some way for you to use it. Take care.
    Hi notme, thanks for the 411, i will try to open a new thread with communication devices....see what happens...thanks
    Hi Patty,

    Just a heads-up that I sent you a little something via your PayPal account last week. I wanted to make sure that it didn't end up in your spam folder. I belong to the CALS Cares Facebook group and someone mentioned a post that you made on this forum recently and suggested that the group try to help you out a little. I hope you aren't offended and don't take it the wrong way. My brother was diagnosed with ALS five months ago and while he and his family might need help in the future, they don't at the moment and I would like to try to help a few other people. It seems so wrong that people with ALS and other MND issues have to worry about money on top of being sick.
    I read your post and your situation sounded so dire that I felt bad for you and wanted to reach out. I hope you don't take it the wrong way. No need to write me back unless you want to. I just wanted to give you a heads-up and let you know I'm thinking of you.
    Take care,
    Deborah
    And if you ever get to northern Colorado you'd better come see me! We're having a blast up here! xoxoxo!
    (2nd part) Things one would not think about unless they have been there. I asked this next question because as my mom was dying, I put the Bi-Pap on her not knowing she had to breathe in the air. "Has the primary caregiver educated friends and family concerning the exact functions of equipment and administering medications if they will be left alone to care for the loved one?" The current questions I ask are much different now because I am writing about my dad getting married.

    I hope your books do well:)

    By the way, I saw you were friends with Marta.......neat gal:) ~ Judy
    It's me again:) Not necessarily FAQ, but I viewed it as what did I learn that I can pass on to others. For example, Mom could no longer eat or drink, and the first weekend I saw her after she got her feeding tube, I did not think about not eating in front of her. So the question I ask the reader, "Are you being sensitive concerning not eating or drinking around your loved one if they can no longer eat or drink?" Or when I saw my daughter kiss my mom in her coffin, she pulled back because she did not know Mom would be cold. I knew to tell my son to kiss her on her hair. I ask the reader, "Have you prepared the children/grandchildren by reminding them to kiss their deceased loved one on the hair?" (2nd part of answer coming......)
    Hey Patty, I wrote you a long letter, and it was too long and did not go through. I have written a book about my families journey while Mom had ALS. She passed away in 2004. I have been putting the book on a thread called "a blanket of snow" because I wanted to help people instead of holding on to it.

    When I went to a writer's conference, an editor told me to add questions to it to give the reader a take away. I think it will help the reader a lot. I am still trying to seek a traditional publisher. One day I might change my mind. What do you write? Who did you get to publish it? Thanks for your suggestion:) ~ Judy
    Hi Patty! I'm in MI with family! We're having a great time. Brad just headed back home this morning. I'll stay here until 10/02. I love the fall in Michigan. It's just starting here. My sister has a sculpture in a big competition in Grand Rapids named after and in honor of me! It's beautiful! how are you sweet Lady!
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