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Posts posted by barefut

  1. Well the bills are starting to roll in from my trip to Swedish. Time to start the charity applications again. My health insurance co is still deciding if they will pay the $21,000 Big City Hospital bill and they denied paying for a test that was ordered by a doctor I never laid eyes on at my local hosptial. I don’t even remember getting this test - maybe I didn’t? But then again I was there for memory problems. I guess they could have billed me for anything they wanted to.


    So now I get to see those gigantic numbers come rolling into my mailbox as my stomach does it own rolling. Is there anything more stressful than money woes? Oh right, health issues how could I forget? What a vicious cycle: get sick - go to hospital - get billed - get sick - go to hospital - get billed - get sick…


    Last week I had to swallow my pride again and ask my little sister for a ‘loan’ (yea, who am I kidding? - not her) She has bailed me out more times than I want to think about. I pretty much don’t have any pride left. In fact I don’t even say, I need to “borrow†some money anymore. I just say, “I need help - againâ€. I’m choking to death on my pride.


    They say bad things come in threes. Number two: My public assistance never paid the my childcare provider. They say I never returned my paperwork. They are right. They are right because their paperwork told me I could opt to call them and give them the information they needed from me over the phone. Which I did. But they have no record of me calling. And because I did not check the right box on the paperwork I had JUST sent in for my other assistance programs, I am outof luck on the childcare assistance.


    I owe my childcare provider over $1000 for the month of July. According to their policy, non payment means no childcare. No childcare means no workey-workey, no workey-workey means no money-money, no money-money means no housey- housey… I have to say that the provider has been great about everything so far. But they can only be so great for so long. “Hello, Sis?†Wait - how about “Hello Ex?â€


    Number three: IRS. I’ll just leave it at that because it would not be cool to discuss the reasons behind why I am owing back taxes through no fault of my own. I will say however, that dealing with the IRS through a certain relief program over the past 2 years and ending up having to go through a tax advisor to get anywhere with it, and making payment arrangements that I could not afford and having to change my arrangements and trying to make my payment online and not being able to log into the website and having to spend my lunch hours on hold with umpteen different IRS offices and in the end just having to mail my payment arrangement late, has all been deserving of another trip to the hospital for more tests I don’t need and my health insurance won’t pay for.

  2. Thanks Everyone,


    I have been experiencing a laundry list of MS symptoms and after a scary episode at work of mental confusion followed by throbbing pain in the right side of my neck and pricklys in my left arm, I went to the ER and was sent to Swedish Medical Center in Seattle for the gamut of neruological and vascular tests all of which came back okay. (Whew!) They wanted to rule out mini strokes and they did. The neurologist recommended a sleep study. My family doctor refered me to an ENT and also for the sleep study.


    My dizziness has subsided but for months I felt like I was on a boat - and I get seasick. It would come and go in intensity throughout the day and some days I would wake up with vertigo. Between me and my kids being sick, I have gotten a warning at work for having too many absentee occurences which includes going home early, which I had to do a few times because the dizziness and fatigue was so bad I just could not function. I am worried now about losing my job as I have also been 'scolded' for my inattention to detail and memory deficits.


    Without trying to sound like I was making excuses, I felt I had to mention my current health issues and I assured them that I am being as proactive as I can in getting these problems resolved as I know they have affected my performance level at work. This is so disturbing to me because I have never ever gotten 'scolded' at any job I have ever held. I have always been the golden girl and now I am the screw up. It does not sit well with me at all!


    Kind of off the subject I started with but thanks for listening to that - had to get it out.


    Anyway! I am actually kind of excited to have read something about MS that may explain the mystery flank pain I have been having off and on for years. It's called the "MS hug" (nice name for pain...) It is the closest thing I have ever heard described to what I have been experiencing all this time. I actually felt like celebrating when I read about it (weird right?) But you know that feeling when you find out you are not crazy or alone. It feels good.


    So, I am actually anxiously awaiting my sleep study because if apnea is the cause of all my problems then I think I will feel like celebrating that too since I know there is safe, effective help for it and I cannot wait to feel better!!!


    Thanks again for your support,

  3. I am concerned for myself. These days it seems I have more multiple sclerosis (MS) symptoms than scleroderma symptoms and I would like to hear from others who have a diagnosis. It seems that this is a rare overlap?


    Specifically, I would like to know more about people's symptoms and how they differentiate them from sclero? What are the qualities of their pain? Where is the pain? What symptoms besides pain? How was their diagnoses made and how long did it take to get it? What treatments are they getting?


    Any insights would be very much appreciated.



  4. Way back when it was a financial burden for me to afford to pay my 30% co pay for Cellcept, I wished so much for a generic. It is no longer an issue for me with my new insurance but I thought I'd pass the info along to those who may be having the same financial issues I did awhile back when my out of pocket expense for Cellcept was over $200/mo.


    Stay Healthy, Happy, Safe and Warm!

  5. Hey Sweet and Whirlway ~


    How was your visit?


    Pam, when I have to work Saturday, I'll get a midweek day off. I'd love to meet you (and your daughter) for coffee! When the canal bridge gets put back together, you should come for a weekend. If you haven't been here before, I'd love to show you around. Consider this an official invite!



  6. Thank you all,


    Ozzy, I am sorry you haven't found any answers or relief yet either. I have an awesome urologist who assures me it is not kidney related even though that is exactly where the pain comes from. He told me that burning pain is nerve related. I'm not sure if that clue leads to anything.


    I too have it mostly right but sometimes both sides. All I am left with is maybe it's connective tissue related? I have searched online and found that there are a lot of people who describe the same kind of 'mystery' pain that has remained undiagnosed.


    Maybe my alien implants are acting up? ;) :lol: :P

  7. It's back again. No pun intended. Not in the mood for humor right now. For about 11 years I have been dealing with this on again, off again burning flank pain ranging anywhere from a 1 to an 8 on the scale of intensity.


    Had my gall bladder out in 2005; still the pain returns. It's not gall stones, not kidney stones or kidney related at all, not a UTI, not muscular.....it's just a mystery that's all! And there's nothing I've found that relieves it and believe me, I've tried everything!


    I take hot showers, long hot baths, use my heating pad, tried icing it, tried all kinds of oral and topical pain relievers, massage, stretching, ignoring, denying, biofeedback, pressure, distraction, hot chocolate, cold beer.....my next move is acupuncture.

  8. Yay guys!


    I got to meet Cheri from my area and we share the same rheumatologist now too. I haven't kept in touch like I should...shame on me! But I think she knows I think of her often - Don't ya? (I know she reads but rarely posts)


    Anyway, I hope someday I can meet the both of you too! We are not that far away!


    Have a fantastic time girls and best wishes on your appointments!

  9. Welcome Penny!


    So happy to have another blog to read with my morning coffee. Jeannie says it's like a trip to the spa. I say it's like a gooey pastry - leave it to me to liken all my pleasures to food!


    Glad to have you on board! Looking forward to reading more!

  10. Well it's been 2 months now since I went from 2000mg to 1500mg Cellcept. This past week the swelling in my hands returned as well as tightness in my face and jaw which has been worse than it ever has been. I can't open my mouth hardly at all and I'm spitting and drooling when I do. I've chewed up the insides of my cheeks and it feels like my tounge is too big for my mouth :P . My feet are also killing me again.


    So, is it the taper or is it a flare? Seems like my flares usually have more to do with all over pain, stiffness and fatigue rather than isolated symptoms, so when I see my Pulmonologist Friday I am telling him I want to go back to 2000mg.


    Anyone else have the same experience with a taper from Cellcept?

  11. Do you ever find yourself laughing at stuff that no one else thinks is funny? I do all the time and it makes me laugh even more because I seem to have some kind of obscure sense of humor that only I understand. It's lonely sometimes laughing by yourself and then you start to wonder -- is something wrong with me? Or is something wrong with everyone else? Why can't anyone see why that is funny?! Then paranoia sets in and you start to wonder ahout your meds.....


    Live Love LAUGH!!!

  12. Wow~ Thought provoking question! Hmmmmm.......


    I sure would love to be able to keep up with my boys in their sports, not to mention introduce them to new activities like I grew up on - skiing, river rafting, but well, those are out of the question for me with Raynaud's, muscle pain, stiffness and fatigue.


    So, I guess I would most like to have been able to keep some pain free endurance and warmth!

  13. Thanks Jill, Jeannie and Mary ~


    I was kicking around the idea of working part time but I can't live on part time wages. My full time hours are starting to wear me down. I read all through the disability requirements and I'm sure my doctors would be on board to help me qualify.


    I did visit the page here and go to the link and read a bit. Some of it was confusing. Aparently I need to have worked for 5 out of the last 10 years to be eligible? Or have earned 40 points? I don't think I'd be eligible even if I qualified as disabled. I also don't think my benefit would be squat since I was a stay-at-home mom for 10 of the last 11 1/2 years.


    I also don't think my employer would be on board to keep me as part time when they need a full time person. That brings up another question: I know sclero is protected by the Civil Disabilities Act - would my employer have to keep me as a part time employee if my doctors said it was in the best interest of my health to cut my hours?


    I guess it's a mute point if I can't live on part time wages anyway. Just looking to the future and thinkin' 'out loud'


    Thanks ladies,

  14. Susie ~


    I am doing the Happy Dance for you! What relief you must feel. I love hearing good news stories.


    I want to thank you for sharing your RHC experience as I am a bit nervous about mine next month - not so much about the outcome because my RHC is for a study, but the proceedure itself concerns me.


    You have provided me with a new question to ask at my screening appointment regarding going in through a vein. Can you tell me more about that? Sounds like the recovery is less of a pain.



  15. Hi Margaret,


    I have the same symptoms as mentioned above as well as I get overheated quickly when I exercise and it takes a long time for me to cool down and get back to 'normal'.


    I get the uncontrolable yawns when I have shortness of breath - I guess my body's way of trying to readjust.


    I hope your friend's daughter has a good news visit!