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barefut

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Everything posted by barefut

  1. Thank you Amanda! "better to have 1 good year than 5 bad" I agree 110% ! My major depression rears its ugly head when I am unable to take care of myself and my boys due to pain and immobility. I just can't go there. I am so sorry about your friend. She is lucky to have you!
  2. barefut

    MNW Cosmos

    From the album: Barefut

  3. barefut

    MNW Rainbow

    From the album: Barefut

  4. barefut

    Sea Treaure

    From the album: Barefut

  5. barefut

    barefut

    From the album: Barefut

  6. Helloooo Again My Friends! Well, baseball season ended with my youngest as starting pitcher for the 9 - 10 All Stars. He pitched a no hitter! This proud and shameless momma had to send her best pic to the newspapers ^_^ We beat our rivals in that game 12 - 2. We lost our next 2 games and this ended our season. My 14 year old ended their season 9 and 2. They didn't have enough players to compete in All Stars as everyone went on vacation.Speaking of vacation.....My youngest didn't want to go to camp this year so instead of getting a week of solitude at the most beautiful lake on earth, I am struggling to find a place for him to stay for 2 days and one night so I can get away. My oldest has been practically living at a friend's house all summer - I felt so guilty I bought them some groceries. Anyone want to buy a candy bar? I over-ordered and am stuck with 6 cases! I feel horrible but people kept telling me they needed more and could sell X amount...by the time the candy got here everyone was done. There are also STILL a hand full of people who have not turned in their money! This makes me mad and stresses me out!! Looks like I'll be selling candy all year. Football season begins for my 10 year old next Monday. It seems I define my seasons by sports - you certainly can't define them by the weather around here! This has been the worst "summer" for weather here in the Pacific Northwest that I can ever remember. Anyway, Henry is so excited - is it possible for a kid to be addicted to sports? He lives and breathes athletics, works out every day and tells me what is not healthy to eat. Most kids his age are watching cartoons, he watches Sports Center, CONSTANTLY! I love it. My oldest begins high school in a month! I truly cannot believe I have a highschooler. He does not want to play football this year. Those seniors are big! He is interested in photography, like his mom, and woodworking, like his G'paw. And speaking of G'paw.....His house is complete! He is all moved in to his new home on my sister's hobby farm property just 15 a minute drive from us. Sister and brother-in-law finally sold their home and will be building their new house next spring. Me? I have not put as much time and energy into my new business as I had hoped I would have by now. I discovered that our local Friday Market is not worth my time and energy and the big Farmer's Market is not accepting 'artists'. We have a new community owned mercantile opening in September and I went to their 'show and tell' day. The buyers seemed genuinely interested in my photo greeting cards and now I am just waiting for a call. I also have not been out on the beach since May!!! STILL waiting on approval (refuse to even consider a denial) of a mortgage modification. Applied last September! Have had to resubmit paperwork 3 times! SO very frustrated with that and am trying to stay peaceful and breathe. Speaking of breathe ;).... I went in for a CT with contrast of my lungs back in May. Doctor said they do appear a little worse than last scan but nothing major. I tried to reduce dosages and/or eliminate some of my meds. With my doctor's approval, I went completely off prednisone and quickly found out that is not an option for me. I am back on 5mg/day and still contemplating asking to go back to 10mgs. Most days are still so very, very hard. I also weaned off of my antidepressant and also found out what a mistake that was. I am back. Right now my biggest struggle (besides being a single mom to a teenager!) is, and always seems to be, the muscle pain and stiffness. While taking photos of my sister's farm for her, the muscles in my legs and hips burned and cramped so badly I had to sit down in the middle of the blueberry field. It took about 20 minutes before I recovered enough to get up. I promised my rheumatologist that I would walk every day - she asked for a mile and I laughed. I see her in September. I wish she could know this pain. After the blueberry patch episode, I will ask for another 5mg of prednisone. I have decided that the benefits are worth the risks of long term prednisone use for me. I have worked hard for many years to keep the dosage as low as possible. I have found that 10mg makes life bearable. And I am done attempting to taper just to see if I can do it - that was stupid. I have been trying to get back into my more serious writing. I went out of my comfort zone and attempted some fiction - not too bad but not ready to share. I have poetry welling up inside me. It wants to get out but I think I need those days at the lake to pop the cork. Wishing everyone a pain free day, week, month year..... Love and hugs to you all!
  7. barefut

    Update on Me

    Well Helloooooo My Sclerodermian Peeps! :) I've got to say that even though I am not blogging much lately, I am still always thinking of my friends here. I've been feeling writer's block. Not sure what anyone wants to listen to from me - ha! Anyway, I figured I'd at least check in and fill you in on what I've been up to lately. I have put 2 of my passions to good use in a new home business which I launched last October. I am using my nature photography to make greeting cards and my love of sea glass to make jewelry. I also incorporate my love of all things 'beachy' into making other crafts as well, such as picture frames, driftwood signs, ornaments and bath salts. I am having a lot of fun with it and learning a lot about being a small business owner along the way. I welcome your crafty ideas as well as any business tips and advice! It is good for me to be able to work from home, be my own boss and make my own hours. Now if I could just make some big money! My family and friends have been so supportive and encouraging, both with their purchases and their kind words. I am truly blessed! I have to say that it is so very nice, therapeutic even, to be able to go into my craft room and zone out on the rest of the world and just spend a few hours focusing on what makes ME happy. It is a great escape as well as a good distraction from all that ails me. The BEST part of my new job though is combing the beach for sea glass. That is my happy place - where I meditate and it is good for my soul. I am still working on fine tuning my website and getting the online store launched. Also, it is my goal to have my jewelry in our local shops downtown before the tourist season hits, which is getting close! I also hope to be able to make enough money to purchase some greeting card racks and get my cards into local shops too. I'm learning it takes money to make money! I am impatient. Like the bumper sticker I saw, "I want it all and I want it now and I want it delivered!" Other news, it's baseball season! Now if only the weather knew that! Both boys are playing Little League this year. My oldest (14) took last year off. I am glad he is back in the swing. I was somehow wrangled into being the Fundraising Coordinator this year. I'm pretty sure the outgoing coordinator waited until I had a glass of wine in me at last year's Spaghetti Feed Fundraiser and then pounced with her request for me to take over. "SURE!" I heard myself say. She was SO grateful it scared me. I have 33 cases of 3 different kinds of candy bars being delivered to my house on Friday! That's 197 boxes for a total of 4,728 candy bars! Each box comes with one kind in it and needs to be reorganized so that there are 3 different kinds in each. That should take care of the Spring Break activities next week! I have to distribute the sorted boxes at the Jamboree on April 7th. That's all for now. Stay Healthy, Happy, Safe and Warm!
  8. My sister shared with me The Eyeliner Rule. Back when they were in college she and her friend made the rule that, no matter how lazy they were or how bad they felt, they are to never ever go a day without at least applying eyeliner. I must have been letting myself go. "If you look good you feel good" she said. Well.....okay...? She obviously has never walked a day in my shoes. I could look like Farrah Fawcet and still feel terrible. But I tried The Eyeliner Rule anyway. It took little effort and it did make me look a little more lively. I had stopped wearing makeup when I quit working at the bank. It's been 2 years now. One less thing to do in the morning when my hands don't work anyway and I have no one to impress. One day my 9 year old son came home from school and said, "Mom, did you know it takes 21 days to make a good habit?" I must have surpassed the 21 day mark because I had been faithfully applying my eyeliner even on my darkest days. Once in awhile I'd throw on some blush too. If there is one thing I am consistent at, it's being inconsistent. That is why I surprised myself with The Eyeliner Rule. What other things might I be able to accomplish if I applied The Eyeliner Rule to them?
  9. Hi Diana - I too have cognitive impairment. Can't say if it is meds, lack of sleep or the sclero - nevertheless I still call it sclerobrain. It was quite disturbing at first especially because I was a personal banker! Ha! Ha! Don't know why that is funny but I can laugh now that I am no longer employed and it does not stress me out anymore. I'm sorry your doctor poo-poo'd your concerns. That is so very uncool. Regardless of naysayers, I believe scleroderma DOES have a cognitive element. THANK YOU SHELLEY! It's time to run my checkbook. Best wishes to you Diana ♥
  10. Hi Jeannie! Wow! I need to catch up! You sound in great spirits. I am glad. Now I have to go get educated on what exactly you had done (sorry it WASN'T the Apple Crisp and Dark Fudge!)
  11. HI Tootired, Everyone gave great information - just want to say welcome and sorry you are having to deal with all that. I have diffuse with gastro involvement. I know what you are dealing with and wish you the very best!
  12. Touching, raw, honest, brings tears. Keep writing!
  13. Hi and welcome Marjalinajolie, Great advice given so far. Just want to say best wishes with everything. It is hard deciding if/when/who/how to tell friends/family and especially employers. Be careful with that last one. Take Care,
  14. My condolences to you and your family, Julie. Thank you for being a part of our lives. We will always remember Birdman's fight. (((Hugs)))
  15. A Happy New Year to All ~ Six years ago today I learned of my Diffuse Systemic Scleroderma diagnosis. I have come a long way since then thanks to all of the wonderful people I have met here on ISN. It's been said hundreds, maybe thousands of times by hundreds, maybe thousands of people, what a great place ISN is to find support from the most sincere, kind, compassionate people in the world. Not to mention the best place to find the most abundant, up to date, reliable information on such an obscure, and confusing disease. Besides information, ISN and all of it's members and staff have brought me tears of compassion, joy and laughter, peace of mind, confidence, and hope. And enabled me to focus on living my life to it's fullest no matter what obstacles scleroderma throws in my path. Knowing I am not alone in battling this disease is a blessing and I thank each and every one of you for being brave enough to share your stories and your struggles with us all so that we all may learn from, and gain strength from each other. I take a moment and remember our friends lost to scleroderma and am thankful to have known them, to have been comforted by them, to have learned from them. Beautiful souls. Best wishes to you all in 2012 for a year full of good health, prosperity and abundant peace, joy and love! Stay healthy, happy, safe and warm!
  16. Tears Lynn and miocean - just beautiful. I have tears.
  17. Hey Kam - Thanks for sharing your experience. I have not heard a lot of positive outcomes for accupuncture and sclerodermians so I think I will give it a second thought.
  18. Oh I am so sorry you are having to deal with this! There is no way around NOT using our hands! I remember when my hands were giving me fits though I have only had to deal with one ulcer and it wasn't that bad but did take months to heal. Since I've been taking Felodipine things have been much better. I think you will get much relief from the Revatio. You will be in my thoughts!
  19. Hi Susie - Had my gallbladder out as well. Hope you never have issues again!
  20. I have also always been interested in trying acupuncture as well but need to save my pennies. Let me know if you try it and if it helps. Best wishes!
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