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barefut

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Everything posted by barefut

  1. Our Precious Kids

    My 15 year old son gave me an unsolicited hug this morning then a few minutes later we had this exchange: He: Do you feel really bad when you don't take your pills? Me: Yes He: Do you feel really bad when you do take your pills? Me; Well some of them do have some bad side effects. He: Like what? Me: Well 2 of them make me dizzy and nauseous but then so does this disease (gastrointestinal involvement) And one of them makes me irritable (we smile at each other) Me: Why are you asking? He: Because I just want to know how you feel. Me - instant tears. What sclerodermian does not want to hear that?! From ANYONE let alone their children? Ohhhh I'm going to feel hugged all day. This gave me chills yet made me feel warm all over. And then I thought about what it must be like for him to have a mom with scleroderma. I would love to interview children of parents with chronic illnesses and put together an anthology. In fact I am composing questions in my mind as I type this.
  2. Barefut's Blog: Back to School

    Yes, Shelley - I think I am a little bit insane! :wacko: I will have lots of help though and I have a mom who said she'd take care of the dinner part, I'll just have to head up the auction which means soliciting dontions from the community and making sure each team contributes a gift basket, I think it will be less stressful than selling candy bars and making sure people get their mnoney turned in - there are still people who have not turned in their money from last year! *sigh* Thanks for the spoons! I'm going to need them. Now accepting spoon donations - no amount too small! :spoon: :spoon:
  3. Hey Everyone ~ I have coped with depression off and on for most of my life but as you can imagine it got much worse since having to deal with my scleroderma. It is one of my most challenging hurdles. I am seeing a mental health counselor and am on antidepressants and I've been using my "happy light". Other things I've done and or tried to help beat the blues: Music Forcing myself outside Petting my dog and cat Meditation Baking Does anyone else suffer from major depression? What do you do for yourself? I am wondering if hypnosis would work and how expensive that might be? What about self-hypnosis?
  4. Back To School!

    Ahhhh it was back to school for the kids today after their 2 week holiday break - which felt more like a month! I tell you, I couldn't get them out of the house fast enough this morning (Where IS that bus?!) I was easily irritated and felt like my nerves were fried with the first clink of a spoon this morning. I don't do sudden loud noises very well. If I was a cat you would find me clinging to the ceiling by my claws. I'm not usually that bad in the mornings but alas - it's a wonder how very little sleep will change your personality. So being as I hardly slept last night, I curled up on the couch with my heating pad the minute the last kid set foot on the bus. Now I am up from a 3 hour nap, feeling as fit and refreshed as a troll run over by a bus and ready to start my day at the crack of noon. As it should be - and guilt free. (Yea good luck with that guilt free part there kiddo.) Although there is a lot for me to do around here I decided to allow my body one do-nothing day. Now if I could just get my mind to follow suit. Dirty bathrooms, piles of laundry, and moldy window frames are haunting me. Not to mention that giant box of papers I need to dive into, sort out, and figure out, in preparation for the Little League Auction and Spaghetti Dinner in April. It's been 15 years since I worked in Banquets/Conference Services but I have not forgotten what a lot of work it is and how attention to details - and lots of them! - is mandatory. I am worried that my now feeble sclerobrain will fail me - and therefore everyone! AGH! The pressure! I'm going back to sleep.
  5. Major Depression - How to Cope?

    Hi Nick ~ So nice to meet you! And congratulations to YOU for going to counseling. It's hard enough to make the decision to finally go and do it, then you have to actually get yourself out of the house. And I imagine it would be harder for a guy ;) Thanks for the reminder/advice to do something meaningful for myself, even if it is small. Being a single mom I find that hard sometimes but when I do it is oh so rewarding - even if it is just splurging on a mocha. I had something else in my head I wanted to say but now it is gone - sclero brain and constant interruptions from a 7 year old - I can't wait until school starts back up! I WILL ask about CBT! Thank you! Looking foward to getting to know you better and sharing coping strategies. Margaret ~ I know I've said this before but I have to say it again - Gareth is SO blessed to have you for his momma and even though he probably cannot express that to you, I know he knows it becuase you make him feel it. You make me wish you were MY mom!
  6. "Stop Touching Me!"

    Ohhhhhhh my goodness will someone please remind me to never, ever even THINK that I can take my two boys, my eldest's friend and the 7 year old I sometimes babysit on a 45 minute car ride to the next town for shopping - even if it is only to pick up the photo prints I ordered and exchange a gift. It's only 3:30 pm and I've cracked open a beer for lack of any other sedative in the house. I feel like my head has been through a blender and I really don't know HOW we even got home without an accident. "STOP KICKING MY SEAT!" "STOP CALLING ME A LOSER!" "STOP SPITTING ON ME!" "I'M NOT SPITTING ON YOU!" "YES YOU ARE!" "NO I'M NOT!".........You get the idea. It would seem to me that 15 year olds would understand the cause and effect logic behind poking a sleeping bear. No different, mind you, than throwing a balled up gum wrapper at a 7 year old in the back seat. Just when we thought he was settled down.... 7 yr. old: "HEEEEEYYYY!!!! WHO THREW THAT AT ME?! THEY'RE THROWING ROCKS AT ME!" Two 15 yr. olds: "Shhhhhh! You're too loud! You lose the quiet game! Mom, make him be quiet." 47 yr old: "You poked him just to hear him roar so enjoy the fruits of your labor." 7 yr old: "FRUIT?! WHO HAS FRUIT? I WANT SOME FRUIT!" Don't get me wrong. I LOVE watching that little 7 year old. He is a hoot! Smart, smart, smart and asks A LOT of questions - that's why he's so smart. And he remembers everything you tell him - EVERYTHING! I don't mind answering his endless barrage of questions - most of the time. I told him to never stop asking questions even if a grown up tells him to because that's how you become smart. I regretted that the minute it came out of my mouth and the next second found myself telling him he asks too many questions. I had to explain the difference between a smart question and a, well, a question that he can answer for himself: "Ya know kiddo, sometimes if you just go with the flow and wait and see, a lot of your questions will be answered before you even ask them." 7 yr. old: "What do you mean?" Me: "Just wait..." So my youngest has gone off to his friend's house and the two 15 year olds are outside shooting hoops and "my" little 7 year old just now comes up and gives me an unsolicited hug for no apparent reason. Awe ♥ I told you I love that kid.
  7. January 2nd - My Thanksgiving

    7 years ago yesterday I heard my doctor say "diffuse systemic scleroderma" to me over the phone. It was the same day my friend and neighbor heard his cancer diagnosis. I am thankful beyond words to still be here and call myself a survivor because my friend did not make it. He fought hard for nearly 3 years and left behind a 13 year old son, my son's best friend. I always take this time of year to reflect back on everything I have been though with this disease and then count my blessings for having been able to come through it. To be able to continue to be mom to my boys is - well there is no greater gift. And I remember all of those precious fighting spirits that we have lost to scleroderma. All amazing people who suffered more than anyone should have to with any disease. All of whom were always there encouraging others and always seemed to be smiling though they themselves had it so hard. When I think of what they fought through I am ashamed of myself for complaining even one little bit. It is from them that I draw my strength and perseverance every day. I feel like I owe it to them to take the best possible care of myself and my boys - because I am still here. I am one of the lucky ones. Scleroderma has been kind to me in that it's onset and progression has been slow. I have been blessed with time. Time to learn, and love and laugh. Time to grow spiritually, emotionally and creatively. Time to just be all that I am, warts and all and to share the precious time that I have been given with my boys and my family, friends and community. And for that time I am thankful beyond words.
  8. Awe shucks thanks girls. It's good to be writing again. I love making my peeps smile.
  9. OK So Where Have I been?

    Thanks for the update on you Barbs. I am so glad to hear you are doing so well and loving your radio job. I cannot believe it has been 5 years! I am looking forward to hearing more news about you, your family and your farm critters, not to mention the infamous hole in the wall (for those who have not read Barb's blog - the 'hole in the wall' is not a wild west gang but is nearly as famous.) Hope you find some time in your busy life to bless us with more blogging! Love you!
  10. Major Depression - How to Cope?

    Shelley, Jo, Margaret, Miocean, Judy and Sweet ~ :emoticons-group-hug: :wub:
  11. Hey Up Its Me!

    BARBS!!!!! Oh how I have missed you! Come back again soon! xoxoxoxo♥♥♥!
  12. Major Depression - How to Cope?

    Thank you so much for your advice and warnings regarding hypnosis Shelley. I would have never thought about some of that. I will ask my counselor for a referral to someone experienced. Another thing I do to help myself is make "Ta-Da" lists at the end of the day instead of "To Do" lists at the beginning of the day. It feels much better to see what I HAVE DONE - even if it is just taking a shower and feeding the boys - rather than look at an overwhelming list of all I have to do and will never get done. Mind tricks work for the feeble minded! Ha-ha! I also try my best to keep perspective and a sense of humor and let myself have a good cry when I need to. Letting go of what I cannot control is important. And the number one thing that helps me the most is being able to openly share my feelings with all my loving, caring friends here who make me feel hugged when I am feeling down.
  13. Hi Miocean! Thanks for the warning about side effects. I personally have not experienced any but others might if you did. My light also has an ionizer and a very quiet fan. If I close my eyes, I can almost be at the beach. The ionizer makes the air in the immediate space smell like an ocean breeze.
  14. New here

    Hi and welcome Kadi ~ I have experienced the same thing you are - with my finger tips splitting and bleeding - it is very painful! Everyone has given great advice - I LOVED my hot wax bath! I would use Aquaphor as recommended by my doctor - slather it on and then use the wax bath. Very soothing! Also drink lots of water to help with your skin's hydration. Feel better soon!
  15. Another dilation and more GI fun

    Hi Julie ~ I am in your exact same boat! I switched Gastro doctors once becasue he was unbelievably rude and disrespectful to me. Were we seeing the same guy?! And then the guy I switched to seemed okay at first but I could tell he had no experience with scleroderma. Then when I went in for an endoscopy with a dilation he FORGOT to do the dilation! That was the MAIN reason for the endoscopy! Now I am looking for another guy and yes it is hard to find someone you trust and feel good about. I also had to switch all of my 'ologists' that I have had since my diagnoses (7 years ago) since Medicaid came under managed care in our state (all states?) *Sigh* It's a pain! And I don't think it's fair. Hang in there - I hope you find someone you can feel confident in. And I hope your dilation makes you feel better!
  16. Holiday Tips for Chronic Illness

    OH! I use a 'happy light' too. I find that it does help!
  17. Holiday Tips for Chronic Illness

    Oh I love everyone's ideas! I have turned into a minimalist decorator during the holidays too. I use the cards I receive in the mail and hang them on a ribbon strung across my picture window. Sadly this year I only received 3 cards! Compared to the 50 or so just a few years ago - might have something to do with the fact that I didn't send any out - my gift to myself. Although I usually love writing a holiday letter, taking a photo of the boys and making a card, I let this tradition slip away 3 years ago when I was feeling stressed and overwhelmed. Makes me sad but it did get expensive too when I found myself sending out 70+ cards! I have a fake tree and hate putting it up and taking it down each year. It takes me an hour just to fluff the thing! I think I'll just put it in the shed all strung up with lights and decorated. How easy would that be to just pull it out next year and plug it in? Ha! I hope everyone had a peaceful relaxing holiday and wish everyone a happy pain-free and prosperous new year!
  18. Rest in peace Peanut ♥ You were a shining light, a fighter, an inspiration to us all. Thank you for your support, your strength, your smile. Thank you for sharing your life with us. I will never forget you. My thoughts are with Lisa's family.
  19. What Matters?

    Every time I pull into my driveway and see the over grown weeds, the lawn that needs mowing and all the unfinished chores and projects, I wonder what others think when they come over to drop off their kid or to pick up mine. I wonder what my neighbors think. What do strangers think? "Boy, there's a house that needs painting, a yard that needs mowing..." Then I think, what does it matter? It only matters if it matters to me. I certainly care more about what I think than what others think. So I have to decide if it is worth the physical, mental and emotional effort to step up the maintenance and consider what would be neglected if I did because I can't do it all. I also have to consider whether or not it is physically, mentally and emotionally economical to let caring about it take up space in my head. I am constantly reassessing what to allow myself to care about. What is really important? What/where should my priorities be? The limitations this disease puts on me makes those decisions much harder than if I were healthy. Not that I could do it all alone if I were healthy either but I could certainly do a lot more! Having to be an example to my kids also makes these decisions harder. What do I want them to see? How do I want them to be? What matters? Does it matter if it looks like we live in an abandoned house? (I exaggerate, but not much) Does it matter if everything around here is falling into disrepair? Does it matter if our whole house is always messy? What matters to me is my choice. What matters to my kids is also their choice but they are still in the process of learning from me. That's a lot of pressure. Most days I cannot lead by example and it is pretty lame to say, "If I felt better the house/yard/whatever would not look like this - I need your help boys" No, they are watching me and absorbing my habits like little sponges. What standards they grow up with will be the standards they carry as adults. I grew up in a neat, clean house with beautiful landscaping. My parents let us keep our bedrooms how we wanted - if they were messy we had to keep the door closed but the rest of the house had to always be presentable as if company were coming. And this is how my home and yard were always kept until scleroderma came knocking. These days most of the house keeping takes place in my head; whether I am wishing the dishes clean or organizing my thoughts and throwing out the ones that don't matter.
  20. Thank you for sharing this story and I have enjoyed reading all the comments. I have been doing a lot of thinking about these subjects lately as my uncle recently passed. He refused to quit smoking despite his wife's death from lung cancer not to mention his own health issues. We all thought he'd go out in a blaze of glory while lighting up with the oxygen in his nose, or from falling asleep with a cigarette in his hand. Instead he went peacefully in the hospital. Blog fodder for me. Thanks again.
  21. 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!
  22. Barefut's Newest Blog!

    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!
  23. Barefut's Newest Blog!

    :blush: Awe shucks :wub:
  24. Still here...

    What she said! ;)
  25. MNW Cosmos

    From the album Barefut

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