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barefut

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Everything posted by barefut

  1. MNW Rainbow

    From the album Barefut

  2. Sea Treaure

    From the album Barefut

  3. barefut

    From the album Barefut

  4. Finger tips splitting

    Yea, ouch! Especially when I use my hands all day counting dirty money and poking keys on the computer keyboard. I've had worse dry skin before yet this has never happened. They take forever to heal too. I am on my third split, this time on my left middle finger. They start at the tip of my fingernail and run perpendicular to it and go deep under the nail. My once tough as nails nails are now thin and brittle and splitting too - what gives? Meds? Don't get me started on my hair! It's getting whacked off tomorrow - oops I mean today as I've been up all night again! :P Thanks, B
  5. 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!
  6. The Eyeliner Rule

    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?
  7. Yay! Congrats ! Can't wait to read.
  8. Aphasia In Scleroderma

    LOL!!! (lots of love)
  9. Aphasia In Scleroderma

    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. Surgery #1 out of the way (Cervical Stenosis)

    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. 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!
  13. my poem

    Touching, raw, honest, brings tears. Keep writing!
  14. Diagnosed today with Limited Scleroderma

    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,
  15. 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)))
  16. my poem

    Tears Lynn and miocean - just beautiful. I have tears.
  17. I am grateful for my good days. You know the ones - when body parts seem to be cooperating or at least not giving you too much grief. You are cheerful, productive, grateful and optimistic! You think, okay what am I doing right today? What did I eat yesterday? Can I repeat everything so I can have these good days all the time? Then BAM! You wake up the next morning and wonder how many cars were on the train that ran over you last night. If you can get out of bed, you can barely move and everything hurts. And if the pain and fatigue itself is not bad enough, you are crabby, helpless, bitter and mad. You don't even want to be around yourself so you know you'd better stay away from friends and family. Ironically, this is the exact time when you need friends and family the most. And so the story goes day in and day out. You never know when you go to 'sleep' at night (and I use the term 'sleep' lightly - pun intended) how you are going to wake up in the morning. Will you be at the top of the roller coaster full of energy and optimism? Or at the bottom of the roller coaster looking up at the hill you must climb? Psychologically this makes a perfect recipe for bipolar disorder. If your physical pain does not drive you crazy the emotional highs and lows surely will. Subsequently, I find that on my good days I am probably overly cheerful, grateful and optimistic (nobody wants to be around that either) so I tend to think I can conquer the world. Play catch up for all of my down days and solve the world's economic crisis at the same time. Then, you guessed it - crash and burn. Finding balance is especially hard when dealing with chronic illness. Our highs are higher and our lows are lower than your average healthy person. Pacing ourselves is crucial to finding balance. As well as paying very close attention to our bodies and our moods. It is recommended and I know a lot of us do keep a health journal. Writing down what we eat, how we feel and what our day consisted of can be a helpful tool in learning how to pace yourself as well as find balance. This doesn't have to be time consuming. It can be as simple as using a calender to assign each day a mood and/or pain marker on a scale of 1 - 10. Keeping a separate food diary where you record what you eat and time of day can also bring insight into what makes us feel better or worse. Paying close attention to our bodies is especially important. With chronic illness, we tend to ignore so much. It's innate; I think it's a survival mechanism. We don't want to be constantly focusing on every single body part that squeaks but I think we do need to set aside some time in our days to sit still, be quiet, close our eyes and take inventory of what is going on in our bodies. Write it down and then move on. When I have done this and then gone back and read past entries I have been surprised by a lot of what I wrote because I had forgotten about this or that - these being recurring things that are worth mentioning to my doctor. We also have to give ourselves a break. Not only physical breaks but mental/emotional breaks. First of all NOBODY is perfect even healthy people, so if your house isn't as clean as you'd like it (my hurdle) or you have to give up some things and/or give in to others, tell yourself it's OKAY. Just don't fall into the trap of doing it all the time and becoming truly lazy. We can give ourselves breaks but we also have to know when to get up and PUSH! Think of PUSH as Persevering Under Sorry Health and ask yourself, "Can I PUSH today? Or do I need to lay low?" One last thing - chronic illness and depression go hand in hand. Be aware of the signs of depression. These include: prolonged sadness, apathy, social isolation, lack of motivation, and a feeling of hopelessness. Please don't be afraid to ask your doctor for help. You deserve to feel better.
  18. Acupuncture

    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.
  19. skin on hands breaking down

    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!
  20. Surgery Done

    Hi Susie - Had my gallbladder out as well. Hope you never have issues again!
  21. Acupuncture

    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!
  22. Neurostimulator

    Awe Kamlesh - So sorry you are having to deal with this. I hope you find relief soon!
  23. More updated doctor troubles

    Best of luck with your situation Amberjolie!
  24. Lung Nodules

    Amanda - thanks for the PAH info! It is a scary thing and I don't know enough about it yet to ease my mind about Pam. I can only imagine how she feels but know she is educating herself and staying on top of her doctors and her care. She is an inspiration to us all regarding being our own advocates and an inspiration to me in so many other ways as well.
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