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Posts posted by Karenlee

  1. I live in my sheepskin lined boots. All year round and yes even in the summer. I've had people comment or snark at me out in public as they think I'm trying to make some sort of "fashion statement". Don't care. They are soft, warm and keep my toes nice and toasty. I have to say, the best present my hubby ever gave me. (other than marrying me of course) ;)


    Oh and even to bed sometimes. :D Gotta do what you gotta do.

  2. Hi all. Well yesterday I noticed a sore in the back of my mouth where my jaw meets. It's not so much a sore as a chunk of meat that sticks out. When I touch it with my finger it's sorta lumpy. Was having a hard time trying to eat dinner. I got canker sores when I was younger all the time. Not sure if its that or a new sclero symptom. I read Johns thread on his mouth sore, although mine is more like lumpy tender skin. Kinda feels like cauliflower. I saw some good ideas to at least block the pain until it heals.


    Anyone else get these lumpy meaty things in their mouth?

    (my apologies for the description, but it's hard to explain) :P


  3. Barefut,


    That's great that you have a buddy to go with. That has to make it easier, especially since it's someone that totally understands from an illness standpoint. It'll be completely different than having a family member there. Let us know how it went. Sending you good vibes.....


    PS: I know how you feel. The PFT scared me too. Good luck!



  4. That's what I love about this community. Everyone cares so much for the well being of eachother. You don't find that often, so it really is a gift.

    Glad to see you're back Razz. What have you been cooking?



  5. I agree with what everyone else has said about not settling until you are satisfied with your doctor. I was lucky to find a great Rhumetologist on the first try, but my dermatologist was a whole other story. He gave me cream for exzema (???) and told me to come back in a month. I never went back because I was completely uncomfortable with him.


    Don't give up, and be your own advocate. We know our bodies better than anyone else. Good luck and please keep us posted.



  6. I watched my sisters kids on Saturday so she and her hubby could go to a wedding. I was sitting on the stoop with my neice (she's 10) and she looked over at me and said "Aunt Ka, what are those red spots on your face?". I told her they were freckles and she giggled and said she has lots of freckles too.

    It kinda freaked me out, since I always thought I covered them up well enough that no one could see them. I guess a full day of sitting with 3 kids 10 and under melted the makeup away :D

  7. Barbara,


    I just read your blog about your father in laws passing, and I want to extend my sympathies to you. I'm sorry I didn't see it sooner. I hope you and your hubby are doing ok.




  8. JJ,


    I take fish oil caplets and cod liver oil daily. Mainly because my rhumetologist told me to eat plenty of fish, but I never seem to eat enough of it, so I take it in suppliment form. Oddly the fish oil doesn't give me the fishy burps but the cod liver oil ones do. And they are much smaller than the fish oil.



  9. Jefa, I'm with you on the regular reply button. Since my memory isnt what it used to be, its good to be able to scroll down to refer back to names and facts. :D I'm always afraid I'll get someones name wrong (ie: yesterday in the chat room lol).



  10. Tru,


    I almost didn't recognize you :D

    That's great information that your rhumetologist gave. I just have a rough time with what point of the disease (I hate that word) I am in. I know people generally say when skin involvement begins, but what skin involvement? Does that mean skin thickening and tightening, or tangs, raynauds?


    Just wondering so I can try to get an idea where I am at.



  11. Peggy,


    Sorry for chiming in so late. I just read your post and I know exactly how you feel. Wanting to do things for your hubby because he does so much for you ane not wanting him to miss out on the things you used to do. I'm glad you went, because even if you felt beat up the next day, you will eventually feel better and now you have a new memory with him.


    I used to go to all of my husbands shows, but lately I've been staying behind. You've inspired me to make an effort to get back out there more and enjoy them with him. Although they end pretty late (sometimes 3-4 am) and my ears are ringing the next day, and my feel are aching and burning from wearing a pair of high heels all night dancing around, I know he misses me being there. So thanks for the inspiration. I will be out and about more instead of turning into a hermit.




  12. Sam,


    Sorry to hear that your having pains. Is there another medication they can give you? Maybe you've built up a tolerance to the Lyrica.

    I know when it's rainy or the pressure drops I get extra stiff and achy. Even if it doesn't rain.

    Hope you feel better soon.



  13. Sure it's changed me. Doubltful life will ever be the same again. I'm much more aware of my mortality. Life revolving around doctor appointments, tests, and medications instead of my career, and planning a family. Waiting for what's coming around the corner next.


    I feel worse for my husband, as it's changed his life as well. He didn't sign up for this when we got married, but being the incredible person he is, he's in it for the long haul and couldn't be more supportive. I feel sad for him that he married what he thought was a healthy vibrant woman. I watched him play a show not long ago, (he was in MI and it was broadcast live on the net) and as I watched him I cried, seeing his band mates and knowing their wives were healthy, working, child bearing women and there he was having me to deal with. I know he doesn't see it that way, but I do. I actually mourn more for him than myself.


    On the upside, I definitely live in the moment more and do what I want when I want. I don't stress over work, commuting, going out to dinner more than we should and like Tru said, having a clean carpet. I do what I can. I make sure there's food on the table and if I can't keep up with the laundry or scrubbing the bathroom, my dear husband is right there to help me.


    So, one day at a time. It's slowly sinking in and getting easier as time goes on.

  14. Lizzie,


    Thanks for the clarification. So I have pitting edema. Didn't realize there was regular edema and pitting. Thought they were one and the same. So that explains the pillow lines on my face for 2-3 hours after I wake up :P


    Also, when I use a pen or knife an fork, there are indents in my fingers. Another lovely side effect we have.



  15. I have a facefull and neckfull. And some on the top of my hands. Seems that when I am tired they are darker for some reason?

    I have noticed, that since I've been on Plaquenil they are lightening up a bit, but still there. Don't know if they'll ever go away, but that's what makeup is for :D

  16. Hi Kiwi,


    I try (key word "try") to avoid anything acidic. Tomato sauce, orange juice, tea. I was told not to drink coffee but that's once vice I just can't give up.


    You may also want to try an antacid medication, just to buffer. I know if I didn't take my Prylosexc, I'd be in lots of burning pain.