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barefut

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Everything posted by barefut

  1. Slacker Mom from November 5, 2008

    Helend and Queenie - I just discovered your replies! I'm so sorry for my late response. Thank you both for chiming in! Every time I feel rotton I learn of someone worse off than me and then I feel like a heel for complaining! You both seem to be doing more and struggling with more than I and I wish you all the spoons in the world to get you through your days! Be back soon! Barefut XO♥
  2. 05 November 2008 Posted by barefut Okay Barb, do you want to stop making me cry now? I couldn't agree with you more on all points except for maybe the part about me dealing with parenthood immaculately. I muddle through. Seems I am constantly looking for role models and asking every parent I know, "Do you run into this (or that) - what do you do?" As with Scleroderma, I guess I just don't want to feel all alone in this uncertain adventure called parenthood. Then there's my two subtypes of being a Parent: 1. Single Parent 2. Single Parent with Scleroderma Yes, we are rare. I would like to bend the ear of other single parents with scleroderma. I don't know of many. Maybe I will put out an all points bulletin in the Sclero Den. I think I need to be relieved of some of my guilt by knowing I am not the only one who ...parents like me. For me, sclero mom equals slacker mom.
  3. Thank you Janey! I could not have said it better myself. I am sharing this with my friends and family who have helped me out so much.
  4. Single Parents with Scleroderma

    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. Crazy

    Leave me alone. I can do it. I don't need any help. (Help me!) Don't you tell me I can't do it or that I am not doing it or that you think I need help. I will tell you that I can do it and I am doing it and that I am dong just fine without anyone's help. (And I will be lying.) But you can't tell me I need help. I will tell you, when I am ready, that I need help, and with what. And it will once again kill off a little piece of me. Like a cancer eating away my dignity and having my soul for dessert.
  6. Single Parents with Scleroderma

    I can't be the ONLY one?
  7. Azathioprine

    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!
  8. SS Disabilty \ Medical Insurance

    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!
  9. 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...
  10. Single Parents with Scleroderma

    Thanks Jeannie, I would like to hear from any other single parents out there who are also battling scleroderma. What are your most pressing issues and difficulties? How do you deal with them? Looking forward to hearing from you!
  11. Starting Chemotherapy

    (((((((Vanessa)))))))) :wub:
  12. Filling In The Gaps

    Oh Babs I am so glad you are back and writing for us again! Thank you for the laughs this morning - how DO you recycle a goose?! Love you bunches! Barefut
  13. 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! :(
  14. Mental Evaluation and SSI

    My mental evaluation went very well. I passed where I was supposed to pass and failed where I was supposed to fail. YOU count backwards from 100 by 13's! Then try and remember 4 words she had you repeat 5 questions ago. :emoticon-dont-know: I followed directions well - folding a piece of paper in 1/2 and placing it on her desk. :woohoo: In the end they said they will recommend that I get SSI and ASAP! :emoticons-line-dance: Then same day, I get in the mail another letter from DSHS. Due to state budget cuts, beginning March 1st, they will now be counting Supplimental Security Income against Temporary Assistance to Needy Families to reduce befefits. I swear there must be some guy in an office watching me and waiting to spring new rules into the system based on when I am granted any kind of benefit.
  15. Absent Minded Me

    Babs is back!!! :emoticons-line-dance:
  16. Update on me

    That's okay. Packers won so it's all goooood. (Yellow and GREEN!) :emoticons-yes: Thanks and love you too lady! :wub:
  17. Update on me

    Hey,Hi! Long time no blog. So, the latest on me is that I have been denied Supplimental Security Income and so have hired an attorney on contingency, to help me with the appeal process. Little did I know, the Department of Social and Health Services has a person designated to do just that. Wish I'd had known - could have saved myself a little money perhaps. But DSHS was pretty slow in letting me know that and I don't have time to dilly dally. Our Governor cut Temporary Assistance to Needy Families. My benefits went from $562/mo (which used to cover the mortgage with some gas money to spare) to $478/mo. With no child support and no chances of ever getting any, I need an approval and quick! The Social Security Administration is requiring me to see one of their doctors. My appointment is in 3 days. It's for a mental exam. Piece of cake. I'll have no trouble failing. :wacko: So how have I been making ends meet in the mean time? Charity. Lots of charity. I don't know what I'd do without Energy Assistance, not to mention the kind and generous support of our local St. Vincent de Paul and Olympic Community Action Programs to help with my water and garbage bills as well as gas and personal hygiene products. I am nearing the end of my annual allotment from these organizations so things are starting to get a little stressful. I am able to fill in any other gaps by providing childcare once in awhile and by selling things I find around the house. Been trying to get rid of some tires for 8+ months! As far as my health goes, everything has remained pretty status quo with the exception of some increased stiffness in my hips and some new nerve pain - fatigue ruling my life as usual. My next check up with rheumatologist, pulmonologist and pulmonary function tests is in April. I had to reschedule them from this month because I had no money to get there as it is a 2 1/2 hour travel time with crazy high ferry fares not to mention gas and parking. Well that's about it on me except that it is SUPERBOWL SUNDAY and I have to finish making my BBQ pulled pork and get over to my friend's house for the game! GO PACKERS!!!!
  18. Back from Seattle

    Hi Susie, I am glad to hear your Seattle doctor visit was good and you enjoyed your time in Seattle. Our aquarium is so awesome - I'm glad you could take your boys there. Thank goodness you got home before that snow!
  19. Hope

    It’s one thing to not be able to sleep. It's another thing to also not be able to do anything else while you lay awake hour after painful hour counting body parts that ache and burn and cramp and sting. There can’t be any greater aggravation than being so sleepy and bone tired, exhausted and spent that you aren’t even able to get up and do anything pleasing or productive with all those sleepless hours. And knowing that the reason for your bone tired exhaustion and fatigue comes not from the hard work of being a productive member of society, but rather from an autoimmune disease where your own body has betrayed itself by attacking all that is good and useful and necessary for life. While my heart screams, “I’m not done!” my body screams, “Yes you are!” And so the battle goes. Day after day after day. And so I look for meaning in all of this. What am I supposed to do? I am supposed to do something. Because there is a good reason and a higher purpose for everyone and everything on earth, good and bad. There is a silver lining, a lesson to be learned. Even in the wake of the most terrible disasters there is good to be found, if you look for it. And so I look for it. Everyday. I look for it. And I count my blessings and I add to my list of things to be grateful for. Everyday. And somewhere in there lies hope, sometimes big, sometimes small but it is always there. Hope for a better day, hope for my children who are also affected by their mother’s disease, hope for those who are affected with this disease way worse than I am. Hope for a cure.
  20. Janey has done over 3,000 posts!

    Woooo Hoooo! You Go Janey!!!!
  21. I found some glass beads in my china hutch that I bought at a garage sale 10 years ago. Although it is sometimes challenging to make my hands and eyes work to get those tiny little things strung, I am finding it a relaxing and satisfying hobby. Only problem - I am running out of beads and am wanting to go to the bead store.....danger! danger! It's one of those places you can't visit without wanting everything in there and I cannot afford anything! However, I have plenty of photographs waiting for me to organize, frame, make cards and collages of, and give away to friends and family. Once I get started on that I am lost for days in memories of years long past. Thanks for this post Shelley. Now I am wanting to go spend some ME time on MY stuff. (but it will have to wait until after SUPERBOWL BABY!!! GO PACKERS!!!!!)
  22. Perceived Parenting Ability and Systemic Sclerosis

    Janey and Shelley - THANKS! And I'm in for a Parent's Day and discussion thread. I'm sure my sons may have some things to say too.
  23. Well Congratulations Shelley and ISN! Mere words are insufficient to describe how much you, ISN and all of its members have touched the lives of so many! Keep up the outstanding work! Many more successful years to come on our way to a CURE!
  24. Well tonight is the night. (We were snowed out 2 weeks ago and had to reschedule) I will be sitting with my 7th grader next to his masterpiece, tri-fold, cardboard, stand-up display on, "A Day in the Life of My Mom". All 200-ish 7th graders' boards will be displayed in the gym and tonight at 6:30 families are invited to browse the displays. Each student chose a topic, did their research and constructed their display board with regard to how their topic relates to their personal family culture and/or the culture of our community. I was surprised and proud when my son told me he wanted to do his on scleroderma, and prouder still when he stuck to the topic when all of his friends were doing theirs on sports. I must say he did a wonderful job and with the help and support of Shelley and her generous scleroderma awareness care package, it turned out great! He got 60/60 points for his oral presentation. The overall project has not been graded yet. I am looking forward to tonight but at the same time, I feel a little nervous about letting the whole community in on my disease. My close friends already know. It will be interesting to see how others receive this information. I will let you all know how it goes and post some photos as well. Stay Healthy, Happy, Safe and Warm!
  25. Ladies...

    I had a good looking mammogram and sonogram. So I am relieved about that but I have breast pains that have been persisting for months - maybe even a year - I am bad at guesstimating as well as writing the onset of these things down. All I can think is sclero-related? Collagen found a new hangout? Anyone else experience tender spots, aching, tingling (almost like lactation let down) and sharp shooting pains? Also sometimes feels like swelling. Is this a part of menopause? Thanks for your input!
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