barefut

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Posts posted by barefut


  1. Hi Kamlesh,

     

    I don't mean to sound like I am calling anyone else lazy. I feel lazy myself when I look at my home and know that I could pull myself up by my bootstraps and tackle the chores if my life depended on it but moving a muscle takes so much energy and hurts! So I sit and look at my mess and just feel lazy and ashamed of myself.

     

    Today I never got out of my jammies. I had all these plans and all I did was make the boys breakfast and lunch. They are on their own for dinner. Still no holiday decor or tree up, maybe there won't be this year. (kidding)

     

    Anyway, I used to have motivation to at least clean up for company but I find myself just cancelling get togethers. I have postponed a dinner party here at my house twice now!

     

    I feel a tangent coming on but I can't stop myself from going off on one right now - it's the most motivation I've had all day. Maybe this should be a blog. I actually sometimes try to convince myself that the pain and fatigue is really just all in my head and mind over matter will prevail. Yea, doesn't work.

     

    I see commercials for sports drinks and athletic shoes where the athletes are shown in slow motion, muscles flexing, sweat flying and teeth clenched, faces in agony as they strive to reach their goal - no pain, no gain, yadda, yadda, yadda....Well I can't help but think that's what I look like trying to get dressed in the morning - minus the muscles flexing part of course.

     

    My recliner is calling...


  2. Aww shucks girls. Thanks for the sympathy :wub:

     

    I've had to go back on prednsione - not happy about it as I just weaned off and it took a long time. But I cannot function on anything less than 10mg right now (myositis :sick2: ) I will start Imuran as soon as it shows up in the mailbox.

     

    I unintentionally fell asleep on the floor this morning for about 2 hours and missed my son's Market Day at school! At least I was able to do the dishes and pick up the house before I went to work this afternoon.

     

    Thanks for the love and warm fuzzies and right back atcha! :wub:


  3. Hi Sara,

     

    I can only speak for my own experiences and I am in no way an expert on anything but I have had only one finger affected with calcinosis. I showed my rheumatologist and she said that was what it was. It started out as a tender spot then a hard little scabby-like sore and I finally dug out a tiny rock hard piece about the size of a grain of minute rice. It still spits out something about every 6 months or so and always starts with the tenderness.

     

    I have also developed what may be more calcinosis on the edge of my lower lip. I am about ready to perform surgery myself to get it out! It is the size of a bb and noticable!!

     

    You have a good resolution there. Stick to it if you can. :(

     

    Take Care, :bye:


  4. How does anyone in constant pain even get out of bed in the morning to take care of themselves let alone the house, the kids, go to work?

     

    I feel like I am becoming a lazy, whining, sympathy monger who no one wants to listen to or be around and frankly if that is the reality then I don't blame people for not wanting to be around me.

     

    Gotta go, my fingers are blue.


  5. Hi Eos,

     

    What a coincidence, I had the same thing in my right wrist/thumb just the other day. It felt like stinging nettles at first then it itched then it felt like a bee sting or fire ant bite. It went on for few hours and then it went away.

     

    I am guessing here just based on previous experiences that my case may have had something to do with a tendon friction rub and a pinched nerve. Tendon rubs can be very painful and can just go away as quickly as they come.

     

    But, I am no doctor and you should see yours to get a proper diagnoses and treatment.

     

    Feel better soon!


  6. Okay so my inferior theory is blown out of the water as my PFT's went up this time. My DLCO went from 58% to 68%. Go figure! Good news though. I go back in 6 months and if there is not another drop then I can go to seeing my pulmonologist annually.

     

    I did tell my rheumatologist about all of us who have experienced lower DLCO results since February this year with the generic Cellcept. Of course she did not confirm or deny that generic Cellcept could be inferior, she just said that there are a lot of people who report experiencing generics differently than the name brands and vice versa.


  7. Thanks Sweet, Jeannie and Patty,

     

    All my other meds are generics and work just fine. Funny how I waited SO long for a generic Cellcept to arrive due to the outrageous cost even after insurance (my insurance at that time required a 30% co-pay!) now I am leaning on switching back.


  8. Thanks Ladies,

     

    My next appointment is in just a couple of weeks and I was planning on bringing this up with her then.

     

    Janey, February was my generic date too and my Sept. PFT's were down as well with regard to DLCO - not much but enough that they want to return to seeing me every 3 months instead of every 6.

     

    It would seem that since the generics are supposed to have the same 'stuff' as the real deal then it should make no difference - but what if maybe the 'other stuff' generics use somehow inhibit absorption? Just grabbing straws too.......


  9. Maybe it's all in my head but since I have been switched to the generic Cellcept it seems all systems have not been go (with the exception of one...) :rolleyes:

     

    I feel I've been in a continuous and worsening flare for the past several months. Has anyone else experienced anything similar with Mycophenolate vs. Cellcept? Or with any other medication and its generic for that matter?

     

    Thanks,


  10. Hi Guys,

     

    I have been seeing Rheumatologist Dr.Jane Buckner at Virginia Mason for 4ish years and I love her. She spends most of her time in research at Benaroya and is only in the clinic Tuesday mornings. I highly recommend her. Do an online search of her and see all that she's been up to in her career.

     

    Yes, it would be worth a trip to Seattle - then I could meet you guys there and we could do lunch! Maybe even look up Peanut...


  11. Thank you all for your sympathetic stories and advice.

     

    Sandra, you've seen right through me. Two years ago I had an in home preschool but had to close due to lack of enrollment. I'd love to be able to do that again but don't think I have that much energy in me.

     

    Lyn - I am waiting to be dismissed on capability grounds myself! My brain refuses to function when I am exhausted.

     

    Janey, They do shave my hours two days a week to avoid the overtime but instead of getting off early, I have to come in later. I get a day off mid week when I have to work a Saturday, which is nice.

     

    Amanda, sometimes I get the feeling that my employer wants me to quit. I feel like a burden on them. And if I am approved to get off work at 3:30 then that means my co workers will have to close every night and then they will resent me. They resent me already just for asking.


  12. I was hoping it wouldn't come down to a fight but I guess it's going to be. I have requested that my work hours be reduced from 8:30am - 6:15pm to 8:30am - 3:30pm with a 1/2 hour lunch. My boss and co-workers are TOTALLY NOT on board with that and now it is sitting in the Human Resources department with the Americans with Disabilities Act paraphrased in my email, "employers must provide reasonable accomodation to include a reduction in work hours - unless the employer can prove that it would be a hardship to the business". I guess they are working on proving it.

     

    I'm not sure I have this fight in me. The bottom line reason I am asking for reduced hours is because I am exhausted. What energy do I have left to fight them with? The long days are killing me. Here comes the "Wah" part: I don't get home on average until 6:45pm and then have to make, eat and clean up dinner, help with homework, supervise showers and pack up for another day. Most days by 3pm, my body has already punched its time clock. My health, my kids, my pets and my home are suffering. It is embarrassing. I won't even mention the issues with childcare in that no facilities are open past 6pm and I have to employ someone to pick up my kids and have them for 20 minutes - oh I wasn't going to mention that was I?

     

    I have been plugging along this past year trying to make it work and it is obviously not. All you have to do is take one look at my house, my yard, my face. The last straw, and not the first time, was seeing my kids pick through the dirty clothes in the laundry room for something clean to wear to school. That's it. I'm done with this way of life before I get accused of neglecting my children.

     

    I actually had the notion of applying for a part time position within the company but of course would lose my benefits. At one point I didn't even care - the extra time in every day to take care of myself, my family and my home sounded so delicious that I really truly didn't care. Then the cost of my medications smacked me in the face. Without coverage they cost more than I make working full time. So that idea is off the table. For now...


  13. Interesting info guys,

     

    My scleroderma specialist wants to put me on Imuran in addition to Cellcept to relieve my muscle pain, stiffness and fatigue. She says Imuran works differently on the immune system than Cellcept.

     

    Glad to know about the possible side effects - they don't sound fun. But sounds like some people tolerate it well. Hopefully I will be one of those!

     

    Stay Healthy, Happy, Safe and Warm!


  14. So one of my favorite customers has a home cleaning business and when I had a few extra bucks, I finally hired her for a few hours at my house. Wow. I so deserved that. I came home and felt like royalty. I have not since been able to afford her and since she knows that, she offered up a trade with me. She will clean my house every other week for one home cooked meal a week and I have to also give her the recipe.

     

    "I can do that!" I heard myself blurt out. Then I realized, I haven't 'cooked' since I was stay-at-home mom, unless you want to call cooking, dumping something out of a box into boiling water, or putting something in a box, into another box and pushing buttons.

     

    I can cook about 4 things really well, so after the first month I'd better find something interesting and worth a thorough housecleaning!

     

    Anyway, the reason for my post is to remind y'all that if there are things you need help doing but can't afford to pay for and/or your pride gets in the way (like mine does), remember what you can do and offer it up in trade.

     

    Are you artistic? Can you cook? File my tax return? Babysit my kids? Drive my kids to their practices? Do some online research for me? Wait -how did this become all about me? You get the idea.....good luck and have fun!


  15. How cool is that?! I am excited for you! It is awesome to hear you talk about how good the radio work has been for you, and why. Your story inspires!

     

    Do you think we'd be able to see the program way over here across the pond? And what about the radio show? Could we hear that too?

    Do tell!

     

    Hugs!! :D


  16. Wow, thanks you guys!

     

    I really must be losing it because this was supposed to be a blog! However, I am glad that it ended up here because I really needed and so appreciate your encouraging, sympathetic replies.

     

    Shelley ~

    Crossword puzzles. I learned from you that distraction makes a nice home remedy for pain and it works for stress too! Yes, if my insurance company pays Swedish, I will show you all a happy dance!

     

    Amanda ~

    Thanks for your story - sorry you have to deal withit too but it helps knowing I'm not the only one - and the US is not the only country for this craziness. Thanks also for the award!

     

    Jefa ~

    Thanks. I lost my cool with a gal over the phone but she was so rude she was almost mean! It's not what they say - it's how they say it! I so didn't need her tone. If their office was local I would be in there in person - hopefully shedding tears and not taking anyone's head off.

     

    Mando ~

    I've been there, done that with the living off the credit cards thing. Still paying that off...I am in the US, so you do know what I am dealing with. Thank you for your symptathy.

     

    Jeannie ~

    Yes!!!

     

    Sweet ~

    I am thankful for my sister too! I could not get through life without her or my dad. Bankruptcy has actually popped into my head once but I am going to do everything I can to aviod that. Your nick name is so fitting! Love you too!


  17. 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.