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Posts posted by barefut

  1. I had the fire department come to my in home preschool to give a lesson in fire safety. They brought the fire truck and ambulance. Since the ambulance has been here before - for me :rolleyes: it crossed my mind to let my neighbors know that they would be coming - but NOT for me this time.


    Well, I forgot. And bless my neighbor's hearts if they didn't call me all concerned and ready to help with the kids again. (I got 2 calls) I am truly blessed. It's comforting to know they are there for me since hubby has moved out (and wasn't much help here anyway) Makes me feel safe.


    I hope everyone has people like that in their lives. People looking out for people because they care.



    Good night,


  2. Well, you sound like a very strong person but no matter how strong on the outside, we all need to be hugged, comforted and told everything is going to be okay - even if we don't believe it.


    I hope your family is understanding of your feelings and doesn't lean on YOU too much for comfort. You don't need to be the rock right now, you are the one who needs a rock.


    Don't forget to keep in touch with us here. Although sometimes I feel like a pebble, I can be a pretty good cyber rock.


    Hang in there. Cyber hugs to you and your family.



  3. I'd better get out my umbrella.....it's raining on my parade! :lol: The honeymoon is over anyway. I've been achin' the past two days.


    You guys are starting to freak me out a little. I asked my doctor about Celebrex but she didn't want to go that route withme. I also asked about Plaquenil about 6 months ago but she never addressed it.


    I did trust my doctor, as she specializes in lupus and scleroderma patients. And she's only starting me on 5mg's. Now you're starting to make me doubt her.


    I wonder if since I'm on Cellcept, they don't want to/can't mix that with certain other drugs and I know they don't want me to come off of Cellcept.


    All my labs came back normal. Yay! I go back every 3 months. In the meantime I will pay close attention to me self.


    Thanks for your warnings and information Shelley and Mary :)


    Love, Barefut

  4. One of the new symptoms I forgot to mention to my rheumatologist is swelling in my legs in the morning. It has only happened twice but very recently.


    I woke up one morning and felt swelling in my hips, thighs and knees. I have also been noticing slightly puffy ankles.


    However, my pulm. appt. was the same day only about an hour after rheumatologist and my pulm. doc. ASKED ME if I had swelling in my legs. (I think rheumatologist called him and told him to ask) I was glad he did because I had forgotten to tell rheumatologist. But I forgot to ask him WHY he was asking.


    What should I be worrying about?


    Rheumy wants me off of ibuprofen because I told her how much I had to take and something to do with the large tissue floaties in my urine.


    I know nobody here is a doctor and I will be calling them back but does anyone have a clue about the leg swelling and urine floaties? Could these symptoms be related to my kidneys? If so, how?




  5. Thanks Heidi. :)



    I cried too reading your post. :(



    I've always wanted to try acupuncture. I'm going to look into it. Did your insurance cover it?



    What did you take Pred for?



    I was prescribed 20 mg pred for 2 weeks for back pain I incurred while teaching my son to ride his bike. ( Running forward in a bent-over position while holding up a 35 pound kid on a 35 pound bike is not advised. :( )


    It helped immediately for my pain which was due mostly to inflammation.

  6. Well, aparently I had forgotten what it felt like to be pain free because when I realized one day that nothing hurt, I wanted to cry and then dance and then clean my whole house and then relandscape my whole property and all of those things I've not been able to do for so long.


    I started Prednisone 5 days ago. I was sitting on the hard gym floor at my son's basketball game and I realized. Nothing hurts. No tension headache, no hip or shoulder pain. I was..........COMFORTABLE! And at peace. I have even noticed that my mood is softer. I'll bet my kids are grateful.


    Pains are still there but much reduced and even absent for portions of my day. I am so grateful and wondering, "Why did I wait SO LONG?!" I should have asked for Pred. 7 years ago.


    Of course I read up all about Prednisone and found out one of the serious side effects is "inappropriate happiness". I don't think I've ever seen those two words side by side before.


    The way my life has been going, if anyone ever notices me being "inappropriately" happy they'd better just leave me alone! :lol:


    Have a pain free day!


  7. Of course my alien dots faded away so I chose not to mention them today at my appt.


    My son showed me the photo in the Believe it or Not Book and this man had dots just like mine only bigger on his stomach and he said they were burns from an alien space craft taking off. I guess he was standing too close ;)


    You know we really should not make fun because there are people out there who have had very real and very scary, unexplained experiences to which they attribute to alien abduction and experimentation.


    I am not judging. I am just trying to make light of my dots so I don't get scared! :(


    Good night all,


  8. A bit of hope.......?


    Saw my rheumatologist and pulm doctor today.


    Rheumy wants to try me on low dose pred instead of Celebrex. I am cautiously optimistic. Like I said, I sure don't need to be putting on any more poundage. BUT hopefully it will allow me some pain free mobility and I can start exercising again. I'm keeping my fingers crossed.


    I also got a referral to a hand therapist so I can get some good advice on hand exercises and find out just how bad off - or well off I am. There's a lot of things I just can't make my hands do anymore but so far the skin on the backs of my hands has stayed pretty loose. I have no curling but a lot of finger thickening.


    Pulm doctor baffles me sometimes. Last visit he mentioned that there were no changes in the CT scans (taken 2 1/2 months apart, the second one taken so soon due to an infection scare)


    Then THIS visit he said that "Even with the changes in the CT's...." my PFT changes have had only minor fluctuations and therefore he says my lungs are



    On different visits he has used the words "mild scarring" and "moderate scarring" to describe my lungs. I guess I can take this to mean that they are "mildly to moderately scarred" (?)


    I have a digital vioce recorder and I swear, I'm going to use it next time I visit him.


    The last thing he said was, your're fat lady. Just kidding! :lol: But not really. He actually said that my lungs are giving me no excuse not to exercise and he understands that with sclero I have other "issues" (or EXCUSES! :lol: ) keeping me from getting moving but that I need to look at it as a health issue.


    Well, I always HAVE looked at weight loss as a health issue! :angry: I see him again in 6 months. I need to lose 75 pounds. I'd love to go back the first of August at least 60 pounds lighter! We'll see what pred can do for me.......


    Take care everyone,


  9. Hi Whirlaway,


    I have my first appt with a gastro in April. I am expecting the endo as well as a stretch to be recommended. I have read that people have no problems at all with them.


    Let us know what you decide.



  10. Yes, I have loose teeth too. Sometimes more loose than other times.


    I grit my teeth at cute things and once I had a little "Henry" attack (my 4 year old) and I gritted my teeth as I was squeezing him and one of my bottom teeth popped loose! It was scary. My dentist didn't seem too worried. So I haven't worried about it too much either - yet. I'm way past due for a visit! :(

  11. Hi Nan,


    Thanks for asking. As a matter of fact, I haven't heard back yet so I assume no news is good news because my throat feels better anyway.


    Guess it was just a case of the crud. I'm still trying to shake the last of it.


    Thanks for your concern. Hope you are doing well! :)


    Love, Barefut

  12. Well, I was exposed to someone with strep on Saturday and my throat started hurting Monday evening.


    I've aslo been having an uncomfortable increase in my GERD symptoms even though I take Prilosec 2x/day. So, I'm worried about esophageal damage.


    I have also tasted blood a couple of times from the back of my throat. Hopefully that could have been nasal related because I get nose bleeds time to time in the winter, but I'm worried nevertheless.


    I see rheumatologist next Tues. I'll ask for a gastro referral. Haven't seen one yet. Not looking forward to tests and proceedures :( and 2 1/2 hours travel one way and finding babysitters and all the expenses again. I've JUST gotten within 2 payments of paying off ALL my medical bills and now here I will go racking them up again.


    Just got back from my strep culture. Nurse said it looked red and tonsils a bit large. I'll know tomorrow.


    Thanks for your replies. Hope you feel better soon Pam!



  13. Thanks for sharing about your baby smiles.


    I really miss those toothless grins.


    There's nothing in the world that compares to feeding your baby, (or grandbaby) and him falling asleep in your arms.


    My "baby" is 4 1/2 and I miss the baby and toddler days so much. I keep having recurring nightmares that I lose him in various ways. Lastnight in my dream, a car jacker took him in my car.


    I guess I have baby separation issues. Hope I'm around for grand babies!


    Wishing you lots of grand baby hugs and snuggles!



  14. My vitamin C bottle says in big bold red letters:


    A powerful antioxidant that helps boost the immune system. It helps maintain healthy cholestrol levels and produces collagen critical for healthy cardiovascular function.


    So, how does this affect us? Should we take it or not?


    (I quit taking vitamins over a year ago)

  15. Emmie,


    I don't know about lupus tendancies. I don't have any problems with sun but it seems everytime I leave department stores or grocery stores after spending an hour or more in there, I feel achy and drained. Could just be the walking. (Could just be my kids! :lol: just kidding. With or without kids I feel the same)


    As far as my period goes, I am starting to see a pattern. The bad day that prompted this post was the first day of my period.



    I agree, we SHOULD get SOMETHING for being good at the doctor's too :rolleyes:




    Cellcept is an immunosuppressant it does very little to nothing for my pain. I guess I'd be willing to try pred but I have a tendancy towards EASY weight gain and I can't afford to put on any more. That would probably cancel out the benefits - lugging around more poundage :(


    I didn't know you could take Celebrex as needed. I thought you had to take it everyday. I hear its very expensive and I don't suppose there's a generic.


    Side note - I read a disturbing article about drug companies paying off generic drug makers to delay the realese of their generic versions. It's a win-win-lose proposition. Both drug manufacturers win and WE lose. This is aparently legal?!


    Anyway, I know what you mean about next week being a whole new ballgame. My pain waxes and wanes throughout the day but some days is a constant. And it seems constant whenever "Aunt Flow" visits. :angry: Maybe I need to do something about her? :lol:


    Thanks for your replies gals,


  16. Lori, Nan and Laurie,


    Thanks for your replies. Lori, Good to know about the theme park scooters, thanks :)




    Yea, I used a topical today too as well as heat patches on my shoulder and elbow. They created a distraction from the pain without a lot of pain relief.

    I tried amitryp. at one time for about 2 months. I could not function from the drowsiness. Good to know about the Imitrex.




    Thanks for cyber hug. I have 2 precious boys 9 and 4 1/2. :wub:

  17. Thanks Janet,


    I have had to take 800mg ibuprofen and the 1000mg Tylenol together at the same time mid morning, on some days when I'm nearly immobile and still, it barely takes the edge off.


    I have never continued those two together at that dosage every 3 - 4 hours all day. I'm just saying that is what it WOULD take to make a dent in my pain.


    Some days I will go through 1600mg/day ibuprofen though. I have always worried about my kidneys but aparently they are fine. (?)


    Today I took my ibuprofen/Tylenol cocktail which didn't touch the pain so I took 2 naproxen, still no good, so I took another I/T cocktail. Also drained the hot water tank twice with two long hot showers.


    Yes. I think it's FINALLY time I get a doctor to listen to me! I asked my rheumatologist 3 months ago for something else and she blew off the question which surprised me. I need to be more assertive. :( ????>>>>>>>>>>>>>> :angry: !!!!!!!!!!!!!!!