barefut

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Everything posted by barefut

  1. Ron, What is PUVA? B
  2. Janey, I have always had that tipping policy too! Barefut
  3. Been having the typical IBS problems today as well as some new symptoms which have been recurring for about the past 2 months or so - needle like pain below my rib cage which occasionally shoots across my torso. It's got me worried about what's going on in there. Also, I feel like I must have put on about 25 pounds but the scale says the same weight I've been for years. What's with this sharp shooting stabbing needle pain? At least I have my endoscopy and colonoscopy Friday so I won't have to wait long to find out something. I haven't been expecting anything to be too horribly wrong in there but now with these new pains, I don't know....... Good Night, Barefut
  4. Thanks guys, Margaret, Had my gallbladder out a couple of years ago and have had stones too so I know it's not those things. Thanks for your suggestions though :) Barefut
  5. Kathy, :huh: :blink: :P :rolleyes: Barefut
  6. kathygirl, That's funny :P Did he know you have scleroderma? Sorry you wasted your time and money. Barefut
  7. Oh Mike, don't get me started! It's late and I don't have enough time..... For too many years I was seeing a doctor whom I was not happy with. (Hey, I said it nice!) Anyway, one of the "best" of the many mis-sed diagnoses was when I told him of my pain and stiffness and loss of range of motion and he mumbled something that I swear he just made up and told me that some people are just stiff after sitting for awhile, it's not a big deal. That was the last straw with him. Also, he diagnosed my Raynaud's as Buerger's Disease, which is most prevalent among middle aged, Middle Eastern, men who are heavy smokers. Last time I checked I was an American, non smoking, woman with a "probable lupus" diagnosis. Now wouldn't a doctor worth his degree at least consider Raynaud's first since Raynaud's piggy backs lupus? Well, I could go on but it is late for me. Maybe I'll add more later. Take care all, Barefut
  8. Does anyone else experience chronic hoarsness or loss of voice? It is SO annoynig to be on the phone or in face to face conversation with someone and have to be constantly clearing my throat or coughing to try to get my voice back! People think I'm sick and take a few steps back. I'm also bummed to not be able to read aloud to my kids without a lot of annoying throat clearing. It makes it a not very pleasant experience. Is there any info out there on vocal cord damage from reflux? Thanks, Barefut
  9. My lower back has been giving me grief again! Sitting on the hard bleachers at my son's baseball game for 3 hours lastnight didn't help matters. Today there's no position to be in that doesn't hurt. Took 2 Alieve with no relief. Sitting is especially uncomfortable. I am frustrated to tears. I have SO much work to catch up on. Since I had to be gone all day for 2 days, nothing got done and I'm swamped with dirty laundry, dirty dishes, and a fridge and a pantry that needs to be cleaned out. I have no one who can help me with these things. I hate days like this. To top it off it is beautiful and sunny today which only makes me more frustrated because I would LOVE to work in my gardens and yard. WHY ME?! Just got an appt withARNP in two hours. Maybe my back and this day can be saved? But even if I get pain relief, I know I'll be told to just rest. Being alone is hard. How will anything get done?! My whole life is one step forward 2 steps back. Never any PROGRESS! Just had to be a crybaby....Thanks for listenin' Barefut
  10. TJ903, That saying of your husband's did make me laugh. :P Thanks. I have not been to a pain mgmt doctor. I injured my back at work about 10 years ago - was told a bulging disc. It's given me troubles off and on ever since. Doesn't help when my hips chime in at the same time. Went to see ARNP and he said to try 2 Alieve 2x/day and if I had breakthrough pain to call him this weekend and he'd call in an Rx for some Tylenol withcodiene. I did have some relief later in the day. I will be sitting on ice today too. Thank you for your kind reply :) Thanks Sweet. You're so......."sweet" :rolleyes: Sam, I HAVE seen others with those seats and I AM going to get one too! Yes, some of them look pretty fancy and comfy. I do get up and stretch and walk around a lot which helps. Kathygirl, ' Thank you for reminding me what is most important. I do also need to be reminded to tackle things with that "one bite at a time" mindset. That is hard for me. I have always been a, "get it all done all at once - and right now" kind of person. It's hard for me to leave things undone or a mess. My father raised me to "work first, play/relax later" HOWEVER, he was not a mom and a mother's work is NEVER DONE. I still need to find that balance. Nan, Hubby moved out last August. We don't see him at all, so no help there. Thanks for your good vibes. I got them. :) Have a Good Day All, Barefut
  11. I rarely ever buy magazines, especially those at the checkstands, but I saw a fitness magazine with an article about boosting metabolism and I tossed it on the conveyor belt. I was just now reading it (Yes, I SHOULD be asleep already! :rolleyes: ) and it has a story about 3 sisters, one who has scleroderma (sounds like diffuse systemic). The story was not about scleroderma but about the sisters' struggles with their health and the power of optimism and positive thinking. The description of scleroderma was accurate but not indepth. It described her symptoms and how she suffered with it. I was pleased to see the mention of sclero. Any little bit of any type of media attention is good for awareness. I have started mentioning scleroderma to anyone who asks me about my health. I had that chance today in the radiology waiting room. It actually feels good to spread awareness and people are usually genuinely interested. I guess I'd better buy some bracelets. They also make good conversation starters. If anyone wants the name of the magazine I will PM it. Good Night, Barefut
  12. Janey, I know what you mean about that uncomfortable silence. With some people, as soon as I say the word "scleroderma", they look shell shocked. I think because it's such an "ooey" sounding word that people automatically think I'm contagious or something. Boy, to those people I can't explain fast enough what its all about and that they can't "catch it". A mother of one of my preschool kids asked what all my out of town doctor appts were for (because I've had to cxl preschool). I thought, "Good I can educate another person" but she was one of the shell shocked ones and was too distracted by the kids to hear me out, so she left in a hurry. I hope she comes back! I remember back when we thought I had lupus and my hair was thinning, I mentioned it to my hairdresser and the FIRST thing she said as she pulled her hands away from my head was, "Is it contagious?!" I could tell no amount of explaining was easing her mind. It was the quickest and worst haircut I ever got. AHHH life with chronic illness....so challenging in more ways than 10.
  13. OH MY ######! NO WAY ERIN! I printed out probably the exact article lastnight and was sitting here with it in my lap while I was reading your reply! TOOOOOO Creepy weird! Yes, "Less well recognized manifestations of Systemic Sclerosis... Thyroid involvement, Impotence, Testicular fibrosis, Bladder invovlement, Carpal tunnel, Trigeminal nerve palsy (and these last two which I think may affect me,) Periodontal ligament reabsorption and vocal cord infiltration" I believe my vocal cord involvement is not due to acid reflux because Omeprazole controls the acid and I very rarely experience reflux anymore. I saw mention of thyroid involvement causing hoarsness and deeper voice as well. Can't wait to get it sorted out and HOPEFULLY get it treated if it CAN be treated! I know there are a few people who wouldn't be sorry to hear my voice go but I'M not one of them! I'll have article in hand at my May 1 appt with rheumy. So glad I found it. Thanks for allyour replies everyone! Barefut
  14. Hi Guys, I was wondering.....I have seasonal allergies and have been known to snore (so I'm told) in addition to having mild-moderate ILD. A few recent days in a row (high pollen counts) I've woken up feeling like I never even slept and I couldn't shake the groggy, hung over, thick-headed, feeling all day. (I had not taken any allergy meds or any other meds than my usual ones.) Do any of you think that could be because I wasn't getting enough oxygen at night? Should I mention it to rheumatologist on May 1st so she can tell pulm doctor? I don't see him til Aug. 1. Thanks, GOING TO SLEEP NOW! Barefut
  15. jlf, How cheap is cheap? Jackie says it cost her $125.00 That's not cheap to me. I'm not sure I'm gonna like my gastro doctor and/or he's not gonna like me. I've learned to not just "do as I'm told" by doctors, but to investigate and get second and third opinions. He seems like a dictator. I'll bet you if I go back to him with my reasons I don't want to take it, he'll scold me for researching the drug and poo-poo the studies. I had uncontrollable jaw jerks taking Reglan so that's not an option. I just don't think I NEED to be on anything right now/yet. My problems aren't that bad. Thanks for your replies. I welcome more! Barefut
  16. YOU GO DAVE! Hang in there and go home soon! Still rooting for ya. Barefut
  17. Will Do Mike. Barefut
  18. Do any of you ever think about what you would do in a catastrophic emergency if you could not get your medications? Since we are only allowed to purchase prescriptions from our neighborhood pharmacy one month at a time, that worries me sometimes. At least I can stock up on Prilosec. That is the one I truly could not cope without for even 1/2 day. I am required to put together an emergency supply of essentials as part of the requirements for licensed daycare. It made me think of my medications. I could not take care of anyone else if I did not at least have my Prilosec (and my Felodipine is a close second). That is scary for a single mom who cares for other's children to think about. I have never spent a lot of time thinking about catastrophic emergencies or preparing for them just in case. But to become licensed for daycare, I have to and I actually have always wanted to get together a proper supply of things. Anyway, just wondering if anyone else thought of the same thing and if anyone had any ideas or solutions. I know I can get 3 months at a time if I mail order but then one has to have a credit card and then of course you have to pay the finance charges.....I guess ya gotta do what ya gotta do......I've heard that somewhere else before...... Take Care, Barefut
  19. Karen, So sorry to hear your sad news. Keep your family close in your time of sadness. Lean on each other. And you can lean on us too. May your happy memories of time with your mom fill the hole in your heart. Best wishes, Barefut
  20. Oh Yes! Paper plates and cups whenever possible is the way to go! Especially when you have 5 kids (only 2 my own) to feed b'fst, lunch, dinner and snacks. I even use paper towels for plates for sandwiches, some snacks and toast. Ya gotta do what ya gotta do.... Barefut
  21. Man! I have been SO tired today! It feels like I never slept even though I got my usual 6 1/2 hours and lastnight it was even uninterrupted sleep! I closed my eyes and woke up and it was daylight. That never happens. So WHY am I so sluggish? Feels like my head is thick and heavy and I can't get a thought through it. I've been feeling a little bit more fatigued and sluggish since our one REAL day of warm spring weather last Thursday. I did a little bit of yard work, felt really good about it and was excited to continue and see more progress but I've only felt worse each day since. I think it may be "Aunt Flow" messing with me again. She arrived lastnight about dinner time. Anyway.......just thinking out loud. Well day is almost done, didn't think I'd make it. Only another hour or so until I can put head to pillow. Have a good night all, Barefut
  22. Well Hi Guys, (gals :) ) The day after this post I went to bed at 8:30 right after my kids fell asleep. It was still light outside! I NEVER do that! It felt good. I slept good. Must have gotten about 9 hours sleep and did much better the next day. I have also been having wierd, vivid dreams and I've woken up with chapped lips and my (almost) 5 year old has been snoring and having the chapped lips in the morning too. We both have seasonal allergies so we're probably breathing through our mouths and I may not be getting enough 02 when I'm sleeping, maybe that's partly why I've been SO tired. Hi Carrie, Yes, Prilosec has been very, very good to me. I take the generic "Omeprazole" now. I could not live without it. The reflux and heartburn would be unbearable. Barefut
  23. Mike, Don't forget to mention the role STRESS plays in disease progression and we all know how STRESSFUL dealing with insurance companies can be, not mention a lawsuit! ;) I like it. Barefut
  24. At my dentist appt he did a full set of x-rays since he hadn't taken any since my sclero diagnosis. (or at all since I've been seeing him for that matter.) On the x-rays, he noticed dark lines around the roots of a few of my teeth which he says can indicate the beginning of bone loss. He said right away, I don't have bone loss but I do have some loose teeth, (one of them upper front) which he attributed at first visit to clenching at night. Now I don't know what to think. However, that upper front tooth has been slightly loose for many, many years, so that's before any sclero meds. He sent a report to rheumatologist because he said I may have to increase or decrease a medication. Barefut
  25. Thanks guys, At my appt withrheumy on May 1 I'll be asking her a lot of questions about pred. I will have been on it 3 months by then. She never mentioned having to take x-tra calcium.