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Everything posted by barefut

  1. "But the main part of what astounded me was that I didn't even have a canned answer for it, because nobody -- not even my doctors -- had asked me that before. Or maybe it was the thoughtfulness behind it, and that she appeared to be expecting a thoughtful answer, not a trite one. I wasn't the 100th patient with complaints that day to be glossed over and ushered out the door. I wasn't the relative who is always sick. I wasn't the disappointing friend who couldn't handle a big outing that day. If I had been able or willing to regale her with my woes that day, they would have been met with a fresh mind; with a real caring. Or at least, it seemed that way." Shelley ~ :emoticons-yes: :emoticons-thankyou: :wub:
  2. No need to bother opening the blinds this morning. It's going to be another one of those dreary, cold, winter days in the Pacific Northwest where the fog never lifts all day. There is no distinction between early morning and early evening because the light stays the same dark grey all day. Best to just keep the ugly outside and try and make my inside as cheerful as possible. On goes my happy light and I scoot it extra close and set the timer for the full 45 minutes. Then it's time to don my sound blocking headphones and blog up my peeps because that always cheers me up. My youngest is so very perky and chatty first thing in the morning, not unlike a small terrier scampering around your feet. "Are ya still gonna make strawberry shortcake for breakfast, mom? Are ya? Huh? Are ya still gonna do that? I'm hungry, can I help? Can I? Huh?" I was up from 3am to 6am browsing the archives of my "Barefut Impressions" hoping that would put me back to sleep. I got a whole hour nap in from 6am - 7am before I was awakened by a cat's wet nose poking me in the face. "Are yew awake mama? Are ya huh? I'm hungry. Are you going to put some food in my dish yet? Are ya? Are ya huh?" Poke poke poke. OKAY! I'M UP! Food in cat dish - the strawberry shortcake can wait until I am able to move without hobbling and I can remember my name. I warmed up a cup of the really, really bad coffee that I brewed at 3am. Note to self: Don't buy the cheap stuff anymore. No kind or amount of cream or sugar in the world will make it taste any better. It is chore day. All day. Bathrooms, bedrooms, kitchen and laundry. My kids are going to hate me all day and because of my lack of sleep, I will be especially intolerant of their whining and half hearted "efforts" to get their jobs done. There will be a lot of yelling, from each of us, and a lot of door slamming and cussing from my youngest. This is starting to sound like that new orange juice commercial where the guy sits down with everyone he will encounter throughout his day and they tell him what he is in for, "At 9 am you will have a flat tire..." And after hearing about all of his challenges for the day he smiles and says, "Good thing I have my orange juice". I tell ya it's going to take a lot more than orange juice to get me through this day with a smile. I'm having a flashback to a dream I had recently... "Hey mom! When are you going to make the strawberry shortcake?!" Gotta go....
  3. I just woke up from a dream that I was with a group of about 5 people who were supposed to be working with me as a team trying to save a bunch of precious historic photographs and stone artifacts before the tide came in and destroyed them. Instead of gathering up the stacks and stacks of photos and putting them into the boxes, one woman kept taking them out of their boxes. Then she ripped one of the boxes and everything went everywhere. Everyone else was just fooling around on the beach, not helping at all. It started raining tiny razor-like raindrops and the tide started washing over the stacks of photos that were sitting on the rocks. I tried to grab as many as I could and put them up on higher ground. My efforts were futile and everyone abandoned me on the shore because they didn't want to get wet and didn't understand why I cared so much about any of it. I noticed that the water went from crystal blue to muddy brown. I was angry and frustrated and overwhelmed but I still kept on trying to save whatever photos I could as I yelled at the others trying to convince them that this was important and we had to get it done. Wowza, well this one is a no-brainer to figure out. If you know me, this is my waking life. Dreams are fun, funny, weird, scary and sometimes dreams are a wake-up call.
  4. yogurt bagels and cream cheese eggs toast cereal instant oatmeal bananas strawberries pancake mix sausage instant breakfast drinks coffee orange juice milk hot cocoa "Most GOOD moms would not let their kids go to school without breakfast or at least would have food in the house!" The honeymoon is over. Pretty amazing how quickly a mom of a teenager can go from feeling hugged to feeling kicked in the gut. That is the list of "No Food" you see there. Pretty obvious that it's not a lack of food in the house but rather the lack of a mom who is able, available or willing to get up and make it for him. I hate mornings. And this morning I have someone else's sick kid home with me - coughing and gagging and hacking his germs all over the place. UGH. I had him 3 days last week too. We just finished going over the proper way to wash our hands - and when we need to wash them. He's pretty good about coughing into his shirt collar but I am mad that I threw out the child masks I picked up last week - though he wouldn't put them over his nose, he at least wore them over his mouth. My nerves are fried. A coma sounds nice. I hate that I require so much down time. I swear, if I had no responsibilities to anyone but me, I would sleep for days and when I woke up, I would enjoy complete solitude for weeks before I would feel like I needed to rejoin the rest of the world. And it's not that the rest of my world is all bad - it's not - I love my life. I just wish I had the energy to live it.
  5. 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.
  6. 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:
  7. 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.
  8. 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!
  9. 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.
  10. Awe shucks thanks girls. It's good to be writing again. I love making my peeps smile.
  11. 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!
  12. Shelley, Jo, Margaret, Miocean, Judy and Sweet ~ :emoticons-group-hug: :wub:
  13. BARBS!!!!! Oh how I have missed you! Come back again soon! xoxoxoxo♥♥♥!
  14. 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.
  15. 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.
  16. 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?
  17. 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.
  18. 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!
  19. 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!
  20. OH! I use a 'happy light' too. I find that it does help!
  21. 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!
  22. 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.
  23. 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.
  24. 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.
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