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Posts posted by barefut

  1. Hi Bleev ~ I was diagnosed with ILD in 2006 at the same time as my diffuse systemic scleroderma diagnosis. My pulmonary doctor prescribed Cellcept (Mycophenolate), an immunosuppressant. My lung function has gone up and down over the years but has remained generally stable with my oxygen diffusion hanging around 60%. I have never had to be on oxygen and my pulmonary doctor told me he has even seen slight improvement in his patients taking Cellcept. Best wishes to you with your treatment.

  2. You have been in my thoughts everyday.

    I wish I could make it all go away.


    For you do not deserve all of that stuff

    Enough is enough is enough is enough!


    I am wishing you good news and peace of mind

    That you can leave all of this testing behind


    And look to a future healthy and bright

    Where you can shine your virulent light



  3. This is to Helend and Queenie and anyone else who posted comments to my blogs.


    I apologize for not responding to your comments/replies in a timely manner! I do not/cannot get notifications of when a comment is made so unless I check often (which I have not been doing :blush: ) Then your replies and comments sit there ignored and I am so sorry!


    I am so very grateful for my readers! And for you to take the time to also leave a comment is just a blessing to me because it reminds me that there ARE people out there reading my drivel - ha!


    Now I am going back into the archives to check and see if there are any more people who need a personal response (and apology!)


    Love you guys!!!



    I should make it clear that DO see # comments here in my list of blog entries - I just don't get email notifications - so it it is entirely my own fault for not making timely replies! - however you want to edit that...thanks!!!

  4. Hi Delkins!


    I hear ya there. Boy, you went straight to the core! Providing a secure future for our children financially, emotionally, socially, and academically is always the priority of any good and loving parent. Now consider single parenthood and then dump scleroderma into the mix! Talk about a tough row to hoe.


    It's the single most heart wrenching worry I have ever experienced. And even though I have survived the worst of that feeling, it is still always there in the back of my mind: How can I make sure my kids are going to be okay if something happens to me?


    Fortunately, I have a wonderful dad and sister who are moving to my town to be close to us and help out. I am also finally pretty confident that sclero will let me see my boys graduate highschool and even college too. I have to stay optimistic, no matter what.


    Nurturing healthy relationships with well-adjusted, well-respected kids and adults is on the priority list. One way I do that for my boys is through sports. I tell them they have to pick at least 2 sports per year and stick it out. Fortuantely, they love sports and 'sticking it out' is not even an issue. They both play football, baseball and basketball. They have had great coaches and have learned a lot of life skills through team sports. If they weren't sports oriented, then it would be art, drama, chess - something to keep them active and involved in the community.


    One of the first things I did after my husband moved out was sign my boys up for Big Brothers with the Big Brothers Big Sisters (mentoring) Program. They were both matched with WONDERFUL men who have been amazing mentors and have provided them, as well as me, with priceless support. They get together weekly and do fun things together. My oldest (13) has had flying lessons and learned to scuba dive. My youngest (8) loves to go swimming and play basketball and just hang out at his Big's house on the water with the dogs and the hot tub.


    If you live anywhere near a BBBS office, I encourage you to check them out! Or check them out online. There is usually a waiting list so don't put it off. Your son is just the age to start.


    There is so much more to discuss regarding your fears. I hope someone can chime in with regard to financial security. I have to go now but I will be back to this!


    Thank you for contributing to this thread!

  5. I agree with Janey. Ask/tell your doctors about Cellcept. Both my sclero specialist and my pulmonary doctor (Virginia Mason Seattle) swear by it as a first defense against the progression of lung and skin involvement. I have been on it for 5 years and my lungs have remained stable and my rheumatologist is impressed with what little skin involvement I have had.


    Best wishes to you!

  6. Hi Craig,


    What a nightmare. I think I would get another attorney. It wouldn't necessarily mean starting over with the appeal process. You might at least contact another attorney who gives free consultations and get some of your questions answered regarding what would happen if you did switch attorneys.


    Also, how is your attorney getting paid? Mine gets paid 25% of any back pay I would receive from the time I filed for Supplemental Security Income until it is received. So, as you see it is not in their best interests to keep the ball rolling.


    I had to show my attorney where it states on the government website that scleroderma is listed as a compassionate allowance. They do hide it well.


    Good for you for writing your congressman! I am interested to hear the reply.


    Also, I may be wrong but I thought part of President Obama's healthcare reform included a ban on insurance companies denying anyone based on a preexisting condition. (Not that, that would help much anyway when premiums would cost you 10K/mo!)


    You know, it sounds like you may actually have a lawsuit against your attorney on it's way - ha. (yeah, not funny) Keep detailed documentation of your attempts to communicate with him anyway.


    Keep hanging in there and good luck to you! And keep us posted!

  7. Turned out she called me before she came and we hashed most of it out over the phone.


    This all came about after I sent an article to the paper titled "Money Saving Tips you Already Know But Don't Want to Hear" mostly about downsizing, recycling, shopping secondhand, giving up bad habits and not being afraid of the change.


    When they received my article they wanted to turn it into an interview of me instead because the story on their other person fell through. Basically I was good timing and was saving them a lot of work. Rather than just print my article as is, they decided to keep their series "Making Do" consistent with their other pieces, in the form of an interview.


    Truthfully, I have to say I was not entirely happy with the way it turned out. But, oh well - I'm moving on...

  8. Oh my goodness Janey, you freaked me out a little with this headline because a reporter from The Leader is coming over this morning to interview me for a story on "Making Do" and my sclerobrain thought for a moment - "What?! how does Janey know before she even gets here?!" Ha-Ha-Ha! :emoticon-dont-know:


    Will share that too when it comes out in print. I'm NERVOUS! :(

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