barefut

Bloggers
  • Content count

    1,310
  • Joined

  • Last visited

Everything posted by barefut

  1. Hi Norma, Welcome to the Forums. I am sorry you are having such a hard time with fatigue. It is one of the most complained about of all sclero symptoms. I'm just going to give you a laundry list of things I have been advised to try: pace yourself get plenty of sleep eat well take a multi vitamin get your iron checked walk get help - with whatever In addition, make sure you're not depressed. Though depression can bring on fatigue and fatigue can bring on depression to make a vicious cycle, then it is hard to know what came first. I discovered that one can be depressed and not even really realize it. I would talk with your doctor about your fatigue if I were you. Hang in there and keep us posted.
  2. Dear Sweet ~ Both my boys had the chicken pox, one right after the other just 2 months after my sclero diagnosis. It was a Saturday, I was having shortness of breath and called the on call pulmonary doctor at Virginia Mason. I explained my recent sclero diagnosis and me being on Cellcept and even though I had already had Chicken Pox too, he wanted me to come in to make sure I didn't have a lung infection. 1/2 day and many tests later I was sent home just fine. He consulted with his buddies and said since I had already had the pox, there was no reason to worry about that. Relax and enjoy your visit. (a shingles vac is a good idea) Love ya
  3. Oh dear Barb what can I say? Your poems always brighten my day. :D You are so clever, you have such wit Your writing you'd better never quit I am so sorry you are feeling pain to the bone I want to tell you, you are not alone. My hips are rebelling going up the stairs And my knees are screaming at the weight they must bear. My shoulder too is giving me grief When can we ever find some relief? The pain has gone up my neck and down my arm This dismobility is causing alarm Why must we work harder than anyone else To do the same things and with so much pain felt? I am not looking for sympathy either (Just a Rhyme for either right now) Your poems on life always amaze I hope you're not shy of a little praise You make rhyming look easy but it 'aint all the time Like Yoda I write just to make it rhyme So, thanks once again for another smile And la -la -la something to rhyme with smile Love you! Feel better soon!
  4. Hi Helen ~ Yes, good to see you post again - sorry you are having feet problems. I have not experienced that one yet - just every other one including the fungus :P (nice subject huh?) I am about to have my pinky toenail removed!
  5. Hello and welcome, the only Y ~ I have not had nor heard of enlarged lymph nodes in the chest relating to scleroderma but I am not an expert or a doctor either. I am glad you are having it looked into. Keep us posted as to how things turn out with your biopsy. Do you have a scleroderma diagnosis? Looking forward to hearing more from you!
  6. My brain turned to mush at work with a balancing nightmare. If you work in banking or with numbers at all, I'm sure at one point or another you've experienced mushbrain. I was relieved to know that there is such a thing and that it was not just me. One of my very understanding and sympathetic supervisors, bless her sweet soul, told me that mush brain is very real and that if you can remember your name when asked, or even understand the question, then you will recover quite nicely. I stared at her blankly. Uhhhhh What? My name? Uhhhhhh, my name is.......What is my name??!!! Symptoms of Mushbrain Early warning signs 1. A feeling that something isn't quite right 2. Attempts to research the cause of the feeling are foiled time and time again 3. Frustration ensues but must be squashed 4. You are now overwhelmed, the clock is ticking, there is no one to help you Early stage Mushbrain attack 1. You overcompensate your lack of knowledge with gushing friendliness 2. In an attempt to regroup you only become more disorganized 3. Constant interruptions are slowly eating your brain cells 4. You will take advice from anyone 5. Eyes become glazed Full blown Mushbrain attack 1. Headache (what doesn't ache?) 2. Loud ringing in the ears 3. Blank stare 4. Inability to answer simple questions 5. Inability to utter a comprehensive word 6. Fight or flight instinct kicks in Complicating Factors 1. 11:00 am lunch, no afternoon break, it's now 5:30 pm 2. You must find someone to pick up your children at daycare before 6:00pm 3. No one you call is home 4. Four different people are telling you 4 different things to do all at the same time Although fleeing did cross my mind, I stayed and fought to the bitter end which is a punch line in itself because the answer to the balancing nightmare was sitting on the copy machine the whole time.
  7. Hello and welcome John ~ I am late getting in on your post but just wanted to say hi and welcome and glad you found us.
  8. Fantastic!!! I am so happy to hear good doctor stories. Thanks for sharing. I hope the results of your tests all turn out well and that you find relief very soon.
  9. Smac ~ We sound like one person! Let me know what "our" neuro says about us I have panic attacks on planes too for the very same reason and also MUST have the air! Good luck with all,
  10. Hello Dear Margaret ~ I am glad that you are laughing and not crying. March is a long time to wait. Hopefully you can get in sooner. Wishing you peace of mind!
  11. Dear Lost ~ What a wonderful person you are to care so deeply for your best friend. I know that she would not want you to be feeling guilty about enjoying your life. And please don't feel guilty about posting your feelings here. It goes to show just how committed you are to your wife. Shelley had some wonderful advice. Take it, try it and let us know how it went. I am also curious, as Janey is, about the medical care yor wife is receiving. It is so important to find a scleroderma specialist. Hopefully we can hear from your wife someday. Maybe she would enjoy meeting us. I know we would love to meet her.
  12. Faith ~ Thank you for that great idea! I am going to do it. I have in mind a device that I've been wanting to invent to do just what you suggested with the sticks. Sticks are better. Georgette ~ By all means don't stretch until it feels like your skin is tearing - that sounds horrible! Only stretch until you feel a gentle resistance then hold it for a few seconds then relax and massage the area. Start slowly and very gently and be patient if it feels like you're not making much progress. Stretching morning and night everyday will soon make a difference. Sometimes I can actually tell visually when I haven't stretched my face for awhile so I know it does help. Try Faith's stick idea!
  13. Thanks for the ideas and reminders everyone! Good topic. :D
  14. In thumbing through a specialty catalog the other day I came across 2 items that reminded me of a couple of members here. One was a T-shirt that said, "It Is What It Is". The other was an outdoor 'welcome' mat that said, "Close The Door The Chickens Will Come In!" I'll let you all try and figure out who I am talking about. ;) And if anyone wants the name of that catalog, feel free to PM me. I may have over done it a bit in my workout tonight. Sharp chest pains. Please, if I have to have a heart attack, don't let it happen until my insurance kicks in. I have 8 more days.....can you put heart attacks on hold? I have a gripe to vent. "When does she not have a gripe to vent?" I hear some of you who know me well and/or have worked with me, say ;) But listen, I've been keeping all my gripes to myself lately and honestly there haven't been a whole lot either. But this one has to come out. I need to know why every single public woman's restroom I have ever been in that has gigantic toilet paper roll dispensers, has them mounted so low that you have to stand on your head to dispense the toilet paper?! Is there some kind of regulation, mandate or standard building code that requires this? What logical reason must there be for not installing them 2 feet higher? Is it just one of those things that has always been done that way and now that we have King Kong sized toilet paper rolls enclosed in plastic dispensers (which when holding a full roll is so heavy that the tissue can't pull it's own weight and breaks off in little tiny pieces in your hands) that no one has stopped to think, "Gee, this would be hard to reach even for someone not in a delicate situation; maybe it should be higher?" I have a trophy for the first establishment I visit that has this type of dispenser installed with common sense. Okay, now on to the motion sensor, automatic flushing toilets which flush (and splash) on you when you lean forward into your headstand to tear off your 1200 thumb-sized toilet paper rations. Yea, gotta gripe about that too. And why does the toilet sometimes choose not to flush at all? Huh? Then you're looking all over the place for the over-ride switch/default flusher button (or else the candid camera) because they never put them in the same place from one manufacturer to the next. I imagine a bunch of people in security laughing their socks off as they sit there with a remote control flusher, just messing with people. Well, I guess that's enough potty talk for one night. This blog may not even be approved! 1:25 am. Going to be a fun day today. Man I wish I could sleep!
  15. Long time no blog. Just enjoying my first cup of decaf for the day as the sweat from house cleaning evaporates from my forehead (why do I need a treadmill?). My new employer held its annual awards dinner lastnight at a fancy golf and country club. I really wanted to go but my body didn't. I even had something to wear and the boys were pawned off on the neighbors for the night. Oh well, there's always next year. Since the kids spent the night at the neighbors, I got to sleep in until 8:30! :D Even better, I get a peaceful, productive morning before the whole neighborhood of boys shows up at my house as is the usual Sunday routine. So not sure how much blogging time I have this morning. Trying to blog with kids in the house is like trying to....do something futile (not very witty this morning <_< ). I was noticing how neglected my pantry has become. It's scary. Speaking of scary, I decided to leave the cobwebs up for decoration as October is fast approaching anyway. I'm trying hard to not become overwhelmed. I still have to file my 2007 tax return, finish and file divorce papers, renew a number of assistance applications and get to know what I'm doing at work. Little boy just burst through the door. I guess a short blog is better than no blog at all (hey now! <_< ) It's football time anyway. GO SEAHAWKS!!! GO PEANUT!!!!
  16. Hi Georgette ~ Sclero has affected my face too: tight, sensitive, shiny skin, small mouth, aching jaw.... However, as I have mentioned in another post, Cellcept has worked to soften the skin on my hands and my rheumatologist said she could tell my face has become more supple over the past 2 1/2 years (although I really can't tell a difference in my face) I hope you can find a specialist very soon and ask about Cellcept. In the meantime, try some gentle facial stretching exercises: :o :angry: <_< :P - Basically, whatever feels good. It's best to do them in the shower with the warm water running over your face. Be gentle and careful because you can strain yourself (I speak from experience :blink: )
  17. Hi JJ ~ In the beginning, my rheumatologist and pulmonologist both suggested 2 years and then a taper off. I have been on 2000mgs for just over 2 1/2 years. At the 2 year mark my rheumatologist suggested I stay the course for fear that going off would negatively affect my mobility since that is where I have been having the most problems. However, with my pulmonologist's blessing, I attempted a taper and felt it immediately. rheumatologist was right and I am staying on Cellcept at 2000mgs. I have tolerated it very well and continue to have my bloodwork done every 3 months. It is true that transplant patients do take Cellcept for life. So as long as one tolerates it well and has labs checked regularly, I don't see anything wrong with staying on it if it seems to be helping.
  18. Welcome Juanis ~ I am glad you have found us. This is the best place to be - the greatest people and the most accurate and up-to-date information you will find. I am sorry you have your hands full with health problems - as if being a mom to 3 isn't enough to worry about... Sounds like you have a good rheumatologist. Stay on top of things and keep us posted. Wishing you peace of mind,
  19. Hello Nina Lynn ~ Yes! I have experienced the exact same pains you describe and also went to ER only to find out my heart was just fine. I also had gallbladder problems and had it removed. I haven't had an episode like it since - but that could be coincidence. I have wondered if it was an esophageal spasm?
  20. Hey Peanut ~ Wishing you continued strength, endurance and stamina. We all can't wait to hear from you and are so grateful for Sara's updates. I've been picturing you rooting for our Seahawks. I missed the last game - had to spend the last sunny day of summer at Lake Crescent. BUT I'll be in front of the tube this Sunday cheering them on and cheering you on too. GO SEAHAWKS! GO PEANUT!!!
  21. Hi Judy ~ I'm glad to hear that your gallbladder is ok and that you think your meds are doing you good. Had my GB out in '05 - a good move for me. Good luck with your vit D - don't forget to drink your milk too :D
  22. Hi Kelly ~ Cellcept is an immunosuppressant which works to sort of balance out our over-active immune systems and put any progression of scleroderma in check. It is effective for both skin and lungs. I have been on 2000mgs Cellcept since Feb. 06. I have tolerated it very well and it has worked to stabilize my lungs and soften my skin. I am also convinced that without it, I would be much less mobile. My rheumatologist agrees and wants me to stay the course. Good luck to you,
  23. Thanks Margaret. I'm going to give it a try. Everything else I've tried makes it hard for me to snap out if it in the morning so I might as well be taking nothing and dealing with the lack of sleep. I have tried night time cold meds, over the counter sedatives, amitriptyline and Xanax. Hopefully Melatonin will do the trick. Better ask my doctor first though...
  24. First day of school. YAY!!! Need I say more? Nah. First day on the new job. YAY!!! Need I say more? Yes! Not only do I have a desk, I have an office! A brand new cushy office in a brand new cushy bank with brand new cushy furniture. It will make up for losing my water view at my old bank. My new bank is a bank/coffee shop upstairs from a funky uptown market/deli. My new position is Personal Banker. I am looking forward to new challenges and a better paycheck. Pretty cool I have my fancy coffee so handy, not to mention all the delectable pastries and muffins. This afternoon I was subjected to the torture of all the mouth watering aromas wafting upstairs from the deli. I can see myself going broke from eating out everyday and gaining 400 pounds from all the mochas and sweets. I am afraid that I will have to have my picture in the business news section of our local paper, introducing me to the public as their new Personal Banker. Hopefully they only do that for the higher-ups. I so hate my picture taken! I am just one of those very unphotogenic people, no matter which side of me faces the camera. In my whole life I have had maybe 2 good pictures taken. Maybe they can use one of those? Of course I was 15 in one, and 22 in the other and 80 pounds lighter in both. <_< But most of all, I'm very self-conscience of the changes sclero has made to my face. I hate my small mouth and my lipless donkey smile. I really don't want to advertise it. Not looking forward to another change of health insurance coverage - and then another in November as we will most likely change providers due to rising costs. I have had a rough time getting my mail order prescriptions all ironed out and as soon as I think I have it all under control, it changes. But hey - I'm not complaining! New job, new bank, bigger paycheck - I am grateful!!! I guess I do need to say more about the first day of school: I wasn't able to be there for my youngest's first day of first grade but I have a wonderful neighbor who has watched the boys for me for these past 2 weeks and she took the boys out to breakfast this morning and drove them to school, taking little one in to purchase his school supply kit in the office and help him find his classroom. I am so blessed to have such special people come into my life and take over for me when I can't be there to be mom. Another busy day tomorrow, must get some sleep.....zzzzzzzzzzz
  25. Has anyone else experienced the following with their ears? sharp pains, deep inside dull ache popping loss of balance when closing eyes dizziness Thought I had an ear infection but doctor at urgent care said no. And no sinus or allergy problems either which leads me to believe a sclero thing? Thanks