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barefut impressions


Back To School!

Posted by barefut , 07 January 2013 · 969 views

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.


January 2nd - My Thanksgiving

Posted by barefut , 03 January 2013 · 892 views

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.


"Stop Touching Me!"

Posted by barefut , 02 January 2013 · 1,076 views

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....
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."

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.


What Matters?

Posted by barefut , 19 August 2012 · 1,049 views

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.


Sports and Kids and Summer and Me

Posted by barefut , 08 August 2012 · 1,178 views

Sports and Kids and Summer and Me 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 :wink:.... 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!


Update on Me

Posted by barefut , 28 March 2012 · 1,521 views

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!


The Eyeliner Rule

Posted by barefut , 04 March 2012 · 1,196 views

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?


Happy New Year with Gratitude and Thanks

Posted by barefut , 02 January 2012 · 1,079 views

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!


Chronic Illness - Finding Balance

Posted by barefut , 14 November 2011 · 1,375 views

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.


From my heart

Posted by barefut , 13 November 2011 · 977 views

The cursor sits blinking in sync with my heartbeat waiting for me to grace the blank white space with words of wisdom, hope, empathy, humor or a share of despair.

But who am I to think I can write? Who am I to think I can change a life?

The cursor mocks me. Dares me. Laughs at me. Yes, who are YOU?

I am just a girl. Just a mom. Just a person. Just swimming.

Breathing, seeing, listening, breathing.

Experiencing, learning, evolving.

Stepping carefully and sometimes not so carefully - sometimes on people's toes - but always learning.

Paying attention, making mistakes, paying my dues, and making progress.

Slow by some people's standards but still progress nonetheless.

Careful not to judge others and yet judging myself by standards set on high.

Who am I to think I can write - change a life with my words, or just make someone think, or laugh, or feel better for just a moment?

The cursor IS my heartbeat. The words are from my heart.

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