Karenlee

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Posts posted by Karenlee


  1. Thank you Sheryl for letting us know. I am releived that she is at peace and pain free, but sad at the same time. Suzi was one of a kind, and her compassoin and courageous spirit will be missed. She reached out to me immediately and would console me when I felt down. Her strength and generuous spirit I will keep in my heart. I loved to hear about her cat Sadie, and how she kept her amused.

     

    With a heavy heart, I say goodbye for now my friend. I know you will be there waiting for me and all of us here that love and care for you.

     

    Karen


  2. Jensue,

     

    Sorry you had such a hard time with the stiches. Of all things. Not sure if it's sclero related, could be. I took a ring out of my peircing and within less than 2 days of it being out the hole almost closed. I think that is from the excess collagen production that we have as scleros.

    Either way, I hope it heals up quick for you and the soreness goes away. Are you having the doctor look at it soon?

     

    Karen


  3. Karen,

     

    Sorry you are experiencing the mouth problems. Keep doing those exersizes to keep things pliable.

     

    I have what smac described, if I'm eating something particularly chewy (ie: chewy granola bar) my jaw gets fatigued. I think that's from the tendons.

     

    Karen


  4. It's hard to say exactly when the puffy sausage fingers started but I'd have to say it was at the very least a year before my knuckles got all thick. I remember one Thanksgiving, after a particularly salty meal they were really puffy and my nephew coined the phrase "sausage fingers". At that point I had no idea of any autoimmune issues, just raynauds but not CREST/Sclero/UCTD. It may have even started before that but I just hadn't paid much attention. Once the knuckle thickening started, it was pretty rapid. Went from one knuckle to both hands within less than a month. Then stopped.

    Sorry for all the inconsistencies in our replies, but there really is no set guideline for this.

     

    Karen


  5. Razz,

     

    That's great! Every little bit helps. I'm sure that's a load off for you.

    I tried to apply but they state that I make "too much" to qualify. Seems unfair because a good chunk of my SSD goes to Dr. co pays and prescription co pays as our insurance isn't all that great and SSD isn't a windfall. It's just enough to keep my head above water.

    Thanks for the link though and congrats :)

     

    Karen


  6. I would never have made the connection between Padre (our pigeon) and lung nodules. Thanks for the info everyone. Now, is it direct contact with the droppings, or just having the cage in the yard is enough to get into the lungs?

    I'd hate to have to make hubby get rid of him. He's had him for 11 years.

     

    Karen


  7. Jess,

     

    Sorry you are having such a rought time right now.

    I, like Lisa also get CT's for my chest not MRI's. And they do them in the prone position (on your stomach instead of your back). Maybe bring this up with your doctor, as it may show more.

    I don't know about the skin graft (although have always wondered about that for skin tightening).

     

    Please keep us posted.

    Karen


  8. Sam,

     

    Sorry to hear you were denied. Have you tried an attorney? I see ads on TV for lawyers that will fight for your case if you've been denied for disability. Not sure how the commission works but maybe it's worth a shot?

     

    Also, I have hear that some medical/billing coder jobs where you can work from home, so maybe you can look into that.

     

    Again, sorry about the denial. You must not let the stress aggravate your condition.

     

    Karen


  9. Smac:

    Isnt that funny? I mean the raynauds isn't funny but when she couldn't get the reading and the solutions they try to come up with I had a good laugh out of it. :D

     

    Sheryl,

     

    My replort didn't say granulomatous disease, just 2, 3mm nodules. I asked her about the nodules, and she said there's nothing to do but like you said watch them. She said they are benign and so small that they wouldn't be able to take a sample even if they wanted to. I had no idea that birds could have been the culprit. Do you know why? I never had pneumonia (that I know of) but lots of strep as a kid.

    Looks like hubbys gonna be cleaning the cage from now on ;)

     

    Thanks everyone.

    Karen


  10. Thanks for letting us know Sam. It means a lot to know she is in good spirits and is at peace with what is going on. She is the strongest person I know and I have so much love and respect for her. That's wonderful that you got to talk to her.

    Thanks again for the update.

     

    Karen


  11. Hi everyone. I'm resurrecting this thread again (sorry), but I had my appointment with my Pulmonologist today for the review of tests and a consult.

    Before I met with the doctor, the nurses were taking my vitals and when she got to trying to take my pulse (where they put your finger in that clip thing) it wasn't registering because my hands were so cold Lol. One of the other nurses (she was talking to the other nurse like I wasn't even sitting there) telling her to have me sit on my hands so they could get a reading. I almost fell off my chair! If I did that they never would have gotten a reading. Well finally we found a finger that could read it so on to the Dr.....After reviewing my PFT, she said it was above par and wouldnt need another one for one year. She did however want me to have another chest CT because of the nodules, my last one was in April, so I have to have one again this month. If the nodules havent grown, then we do another in 9 months from now. Then if that looks ok, 18 months, then that's it, no more after that.

    She asked me if I ever had pnuemonia, which I told her no. Then she asked if I had any birds. I do have a pigeon but she's in a cage outside. She asked if I ever clean the cage or came in contact with fecal matter from the bird. Then I remembered that once in a blue moon we let her out and she comes in the house, and sometimes I have to clean up the yuck. She said that may be what caused the nodules. I couldn't beleive it! I had no idea birds could cause lung problems.

    Anyway, so far so good. Just wanted to let you all know what was going on.

    I feel releived and lucky.

    Thanks for listening.

     

    Karen


  12. Shaw,

     

    I had a chest CT done, and got a call from my Rhumetolgoists receptionist telling me I had 2 3 mm nodules on my lungs and that I need to go see a pulmonologist. Needless to say I was out of my mind with worry only to find out that it was benign and could have been the result of a chest cold from years ago. I totally understand your concern, but just wait until you get the results before you pannick. 9 x's out of 10 it's really nothing. Try to stay calm (I know, way easier said than done).

     

    Keep us posted and know that we are here for you.

     

    Karen


  13. Suzi is one of the first people to reach out to me on this forum. I don't think I have the words to express how I feel, other than I am blessed to have been touched by her kindness. Suzi if you are getting these messages, thank you my friend for being there for me and all the others on this forum. I know you will be at peace. I will always hold you dear to my heart.

     

    Love,

    Karen


  14. Hi parris,

     

    Yes, I've had hashimotos since I was in my late teens. I do beleive that has a connection with the autoimmune issues that I'm dealing with now. Apparently I developed it at an earlier age than normal and it took a long time until I was finally diagnosed. Up until then I was just labeled as "fat and lazy" as I put on a lot of weight and was tired all the time, and at a young age it was unusual for me to be that fatigued. Also lost a lot of hair.

     

    Have you been recently diagnosed or is this something that you had for a while? From what I understand, it is common for autoimmune conditions, but I can't say for sure.

     

    Karen