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barefut

Today

Today Little One woke up at 5:00am hungry but couldn't do much with his oatmeal yet. His fever is gone! And it's raining! Never thought I'd be glad to see the rain but if it washes some of the pollen out of the air for awhile, I'll take it. I woke up myself the other day with a swollen face and bloodshot eyes. Speaking of waking up, I have discovered that if I take 800mg ibuprofen at night, I wake up much better. I am down to 4mg prednisone, so up goes the ibuprofen.

 

So, what to do today, if Little One (and my wallet) is up to it, I guess I'd better hit the laundromat. And check the mail for my tax return. Maybe get some food in the house. I hate grocery shopping. Yes, hate. Strong word but that's how I feel. I wish food would replenish itself.

 

I remember a time when I actually looked forward to grocery shopping. Big One was little and not only was I a stay-at-home mom, I was an isolated, no friends mom. Grocery shopping was like going to a party. I actually planned menus, made lists and comparison shopped. Being around people was comforting even if they were strangers. If I was lucky, I'd run into someone I knew and get to talk their ear off about everything.

 

How things change! Now, being around people is starting to wear on my nerves. My solitude is precious. I'm lucky if I can get in and out of the grocery store without seeing anyone I know. I can't remember anything long enough to put it on a list, planning menus takes place in the frozen dinners aisle, and comparison shopping is limited to 'which store can I get in and out of quickest?'

 

Well, feels like one of my pills got stuck today, better go see if I can make it go down before my esophagus burns up.

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Two sick kids again. ARGH! Can we ever get healthy? This past weekend Big One complained of a sore throat, headache, stiff neck, aching back, had a temp of 102.5 and was hunched over a bowl in anticipation of vomiting. Somewhere in the far reaches of my memory, those particular symptoms rang a bell. Something I read.....meningitis? A quick web search said yep, get him to the doctor. A visit to the Express Care at the hospital confirmed strep throat. Antibiotics on the menu and I am to keep a close eye on him for the M word. Thankfully, he feels much better today. Luckily Little One's earache is not an infection and is probably just allergy related. The pollen is really bad right now and his poor little eyes and nose are driving him crazy.

 

So, off to school they go Monday morning. 2:00pm I get a call from school, Little One has a tummy ache and has been sleeping in the nurse's office. I have missed so much work due to our illnesses, I have gotten a verbal warning. I called my precious friend/babysitter/neighbor who is battling some serious health issues of her own and isn't even supposed to be around any kind of possible infection. The school nurse said he didn't have a fever. My friend agreed to pick him up for me and take him home with her.

 

She tucked him in with blankies, gingerale and movies and he again fell asleep. About 45 minutes before I was able to pick him up, he woke up with a fever and vomited. Poor kid. My poor friend, too! Now I am sick with worry about her catching this 'whatever it is' bug. Little Ones bounce back. An infection could be life threatening for my friend. Now I will keep an eye on her too. Well, thankfully I was scheduled for my day off tomorrow so I can stay home and play nurse and hope I don't get this latest crud.

 

I have had one day off in the last 12. Yea, 2 of those were Saturdays and I was off at 1:30 but nevertheless, it wasn't a day off. Then I totally forgot the 8:00am staff meeting this morning! I have never forgotten a meeting! I am always the first one there! I may joke but I am seriously worried about my memory. I know employee evaluations are coming up soon, so I couldn't have better timing to start messing up at work. I am lucky to have a job.

 

Oh and my clothes washing machine broke. I have been anticipating that one. I wish it could have waited for me to have some clean clothes in the house. Nope. Everything we own is dirty. Now I get to spend $3.00/load at the laundromat, one load at a time, on my lunch hours. My refrigerator is next to go. Instead of getting to spend my tax return on a hot tub, or invest it or save it, I will be buying new appliances with it. Joy. But, I am grateful to have a tax return.

 

Some good news! When I got home from work today, another of my precious neighbors had mowed my lawn! Front, back and side. I can't tell you what a relief it was to see it all done. He also pulled some weeds in my front flower weed beds. I am blessed to have such great neighbors.

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Okay ladies, thanks for the belly laughs! No thanks for making me wet my pants. Dented bosoms and parking lot face plants?! The visuals you two have stirred up in my imagination will have me laughing for days. Bless you both for that. How I would love to share an evening and a bottle of wine with you two!

 

I have nothing to blog now. I just want to bask in the afterglow of endorphins and massage my cheeks back to their former selves. Oh, and change my pants.

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Wow, would you look at that -- I am a blogger. A blogger for the International Scleroderma Network! (International!) My blog even has its very own (witty-ish) title and everything -- I think I might capitalize Blogger.

 

One might even go so far as to say that, I am a 'writer'. I write; therefore I am a writer. That is bold for me to say. I have always felt inhibited from actually referring to myself as'a writer. That term is reserved for published people who make a living from their work. People who have struggled for years, emotionally and financially, to earn that title. People who have gone to school to learn the finer art of writing and/or who have spent countless hours working to become published in addition to the countless hours of writing and/or agonizing over what to write about.

 

But tonight, with my glass of red wine warming my sore throat, I am uninhibited enough to say that, "I am a writer." That feels kinda cool. I couldn't pretend to be a writer without the privilege of being a Blogger for the International Scleroderma Network! (International - that's world-wide!) And I couldn't be a Blogger without the blessing of Shelley Ensz and the wisdom and support of my editor and mentor Carrie (Jefa) Maddoux. (That's cool - I have an editor -- I must be a writer!)

 

Without knowing it, Jefa has taught me a lot about writing and even more about myself. She has given me one of the greatest personal gifts I could ever ask for -- confidence. And without ever having met her in person, I can feel her confidence in me. She has made me think. Hard. About a lot of things. Carrie is on the top of my list of cyberfriends I would really love to meet in person, if only to give her a big hug and say thank you. Thank you for your confidence in me and thank you for giving me confidence in myself.

 

Thank you, Carrie.

You will always be in my heart.

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Two Sick Bloggers

There once were two bloggers with colds in their heads

People kept telling them that they should be in bed

"Whatever will my family do then?" they said

Whatever will your family do when you're dead?

 

For that's surely their fate if they kept running 'round

They were driving themselves right into the ground

That is not where their families want them to be found!

They need those bloggers with a body that's sound

 

So off to bed they did go that day

And in their beds they loved to stay

What bliss it was for them to lay

And have things brought to them on tray

 

Their families worked just like a team

They even cleaned the carpets with steam

And brought their sick bloggers warm cocoa with cream

POOF! It was only just a dream

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There goes the cork! I feel lousy. No, lousy would feel good. On the lousy scale of 1 - 10, I'm at about a 20. On top of the normal everyday lousy, I have been trying to hack up a lung for 2 weeks all the while trying to keep from peeing my pants with every cough. I also think my head might explode. After staying home with the boys for a week when they had the crud, now I have to continue on to work with my crud. I'm sure my fellow employees appreciate that. Oh, and it's that time of the month. That time of the month always has perfect timing.

 

As sclerodermians, or fibromyalgians or any kind of chronic pain sufferers, think for a minute about how much constant pain and discomfort we ignore every minute of every day. Once in awhile, in a quiet moment I will close my eyes and take inventory of what hurts and I have to laugh. Because, what a joke! Really. And it's either laugh or cry and crying never really does much good.

 

And then there are the body parts that, if not actually painful, they just refuse to function. Take my brain for example. As I mentioned before, part of my job as a personal banker is to remember people's names, and use them. Thus the term personal banker. I have a couple of problems with that. First of all, I have to remember a face. Then I have to remember a name and match it to the face. It doesn't do any good to remember names if I'm not using the right name with the right face. If only I could just call everyone sweetie or honey or pumpkin. I think that might be frowned upon in personal banking.

 

Well, I'll put the cork back in it and spare you my inventory of pain and go for another dose of cold medicine. I have to get ready for work in about 3 hours maybe I can catch a few zzzz's before then.

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Greenhouse Envy

In reading Barb's blog, Green Fingers, I find myself suddenly experiencing greenhouse envy in sort of an "Ah Ha!" way. Greenhouse! Of course! I've got to get me one of those! Why, all these years, it has never occured to me that I could have one of those too? I do not know. Ten years ago, I started some flower seeds in the living room window, too poor to afford to buy plants. I loved the process but it was quite a pain not having the proper space or place to do the job. I ruined the woodwork on the window sill and I have never started seeds indoors since.

 

Barb's description of a Raynaud's free environment to "potter around" in sounds like a retreat for the soul. How I would love to spend hours babying little seeds into something beautiful for my yard or something healthy to eat. I can feel the warmth and smell the soil already.

 

So, why not a greenhouse for me? Where there's a will there's a way. (Or where there's a dad there's a way... :rolleyes: ) So dad, I guess you know what your next project will be on your next visit, as if you haven't already done enough for me! But you knew I couldn't let you get away without putting you to work on some kind of summer project right? ;)

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If I had a magic wand I'd tap all the grumpy, uncaring, irresponsible, argumentative, disagreeable, negative people in the world and make them wear rose colored glasses. I have got to say that it boggles me how some people have made this their way of life. Might need a magic bat.

 

My son and I were crossing a parking lot in a cross walk when a car failed to stop and skidded on the wet pavement. (You might be thinking this is going to be about the driver - nope) I'm sure the driver saw us but expected us to stop for him. Since we were already 3 steps into the the crosswalk, we continued walking expecting the driver to stop for us. After the close call, I looked back and realized that the white lines on the pavement were so worn away they were barely visible. Being that we live in a tourist town, I figured the driver might not be from around here and therefore not aware that there was a crosswalk there.

 

Once inside the store, I met a clerk and told her of our close call and politely asked if she might pass along to management that it is time to re paint the lines in the parking lot. I guess that responsibility was too much for her and she told me to talk to somebody else. 'Luckily' the store manager happened to be walking by so she flagged him down. Once again, I explained our close call and mentioned that for safety's sake, its probably time to have the lines re painted in the parking lot.

 

I was floored when the manager became defensive, (as if he were the driver!) and tried to argue with me about there being a crosswalk in the parking lot and beckoned me to come outside with him and show him where this incident took place. Giving him the benefit of the doubt, I figured he must not be from around here, and can't see the lines either. When he saw where I was talking about, all he had to say was, "Well, the parking lot is not our responsibility, it's the building owner's."

 

It would have been easier for me to go buy paint and a brush and paint the lines on the pavement myself! What is wrong with people? If I was that clerk and someone told me that story and asked me to pass along a safety hazard to management I would have said, "Oh my goodness, I am sorry that happened to you. What a scary thing. I will definitely let the let my manager know." If I was the manager and I heard that story and even if I didn't know there was a crosswalk in the parking lot, I would have said the same thing, and if I felt the need to defend the store from some kind of liability, I would have simply said, "I will let the building owner know."

 

There went fifteen minutes of wasted time I'll never get back.

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Random Stuff

If you dream about exercise, does that count? I woke up this morning thinking I was all firm and fit and healthy. What a rude awakening! Then I noticed the headache. And its raining. Silver lining: It's not snowing!

 

My cat is trying to pet himself with the vacuum cleaner. My youngest is staring at me. "Why don't you pet your poor cat?"

 

"Nope, I'm busy."

 

Big One streaks through the house looking for clothes. He can't find any because they are all folded up in his dresser drawers.

 

Little One discovers my grandpa's harmonicas. Yay. Could be worse; grandpa could have played drums.

Cat sings along - or is he telling him to stop it? OOPS! He's telling him to stop it.

 

Big one says, "What do you play if you can't play an instrument? Drums."

 

Okay, so I actually went to an online match making service last night and filled out a questionnaire. With every group of questions I found myself criticizing the survey: "They just asked me the same thing in slightly different words in the last group of questions! How did I answer that one?" By the time I was done they said I was schizophrenic. Don't tell anybody.

 

Silver lining turned to lead: It's snowing.

 

45 minutes later -- It's a whiteout with the most gigantic flakes I have ever seen! How can something so beautiful be so much of a pain?! There'd better be school tomorrow - I'm going to work if I have to harness up the neighborhood dogs and mush into town.

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Took Little One to the urgent care at the hospital tonight upon his second, "My ear hurts". This is the kid who holds the record for most ear infections as an infant. This is the kid whos ER doctor told me when he was 2 years old, "You know, ear infections will clear up on their own - you don't have to have antibiotics every time." Okay doctor, tell that to this screaming kid at 3 am! Anyway, I wasn't going to wait another day this time.

 

I'm still feeling guilty for not taking Big One in sooner. Poor kid. I feel awful about that. He has not had the history with ear infections like my youngest and so I let it go until he had a sinus infection too! What kind of mom am I? That borders on neglect! Handcuff me and take me away. If there is a silver lining (and I am always looking for one) I got to spend some much needed quality time with my oldest this week. We worked on his homework together. He gave me refresher courses in American colonization and plane geometry. I learned a lot! We also had some good talks, played board games and laughed a lot. That kid cracks me up. I am a very lucky mom.

 

I'm kind of a lonely mom too. I've been single for 3 years now. It is really hard for me to see all the happily married couples of my sons' team mates at practices, games and the award dinners. I feel like an outsider. I will admit, I am jealous. You can tell these couples are truly soul mates and completely devoted to each other and their kids. I want that. But I am so far from that. I haven't even been asked on a date - or asked anyone myself. This small town does not help.

 

I am about ready to go online in search of someone. That's economical. I figure life is too short you know? I don't want to spend what little time I have left on this planet wishing I had someone else's relationship; waiting and looking for someone in this small town who might be compatible. And I don't want to play games either. I want to lay all my cards on the table, cut to the chase and get to the good stuff. I've always been a no nonsense kind of girl. Wow, this is starting to sound like a profile.....maybe I'll work on that.

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April 10th, screening appointment for the study. I need to score less than 60% on my PFT for diffusion in order to qualify. My PFT a month ago was 58% so, we'll see.......

 

Been home all week with sick kid(s). Big One has a double ear infection and a sinus infection! I feel SO bad because in hindsight I should have taken him to the doctor sooner and I could have saved him at least a day or two of agony as well as maybe saved myself some time off work. I have no sick, or float days left and had to dig into my vacation as well. He is much better today now that he has a couple of days of antibiotics in him. Now, my head is filling up! I need to be done with whatever is coming my way by Monday because I can NOT miss any more work!!! Been trying to use the time off this week to catch up on house chores, though I feel like I'm spinning my wheels. I tackle one area only to come back to the place I just finished and find it a mess again. How does that happen?!

 

I have enjoyed being at home with my boys this week but I hated to be missing work (The grass is always greener on the other side of the fence.) It was nice to be able to take Little One to his baseball practices, nice to make dinner before 7:30 pm and nice to help with homework without falling asleep. Lately I have been experiencing extreme sleepiness and fatigue at about 2:00 - 3:00pm everyday. It's like my body says, "Okay, I'm done for the day, time to go home." Working part time and getting paid full time hours would be a dream! I want to work. I like to work and I love my job but the hours are killing me and my family life.

 

If I could only clock out at 5:00pm instead of 6:30 it would make a world of difference in my single momhood life. That extra dinner time hour is crucial family time with sports practices and games to get to, dinner to be eaten, and homework to be done - not to mention sleep! Listen to me complain - I'm LUCKY to HAVE a JOB!

 

Feeling dizzy and feverish........better go now.

 

Stay Healthy Happy Safe and Warm!

barefut

Symptoms/Study

Been having some gastrointestinal and pulmonary issues that have been bothering me more in the head than in the lungs or gut. Makes me wonder what is going on in there. Of course I just had my 6 month check up and failed to mention the gut stuff. The shortness of breath which I did mention to my pulmonologist, didn't seem to phase him. It bothers me however, since I haven't had to deal with it for such a long time. Maybe it is just a flare? Maybe it is to do with my fall upon my ribs? The fact that it only occurs with exercise makes me worry about pulmonary hypertension.

 

My pulmonary doctor asked me to participate in a study. A right heart catheterization is involved. Sounds scary but folks I talked to here who have been through one assure me not to worry. I try not to worry but when I see that possible complications include death, I wonder if it is being irresponsible of me, as a single mom, to put myself at risk? Or is it irresponsible of me as a sclerodermian to not participate? I'll bet there's more of a risk of me getting killed by a bus while crossing the street than during a right heart cath. I do feel a responsibility to participate. And if I gotta go, I'd rather go in the name of research than in the name of a bus.

 

One purpose of the study is to evaluate the effectiveness of non-invasive screening methods for pulmonary hypertension and pulmonary arterial hypertension to see how well they can predict and confirm diagnosis in scleroderma patients. Right now, a right heart cath is the standard method of testing for PH/PAH and it is invasive and expensive. Since RHC is so invasive, it is only used to confirm diagnosis not to screen for it.

 

The other purpose of the study is to see how many scleroderma patients develop PH/PAH. The study will be performed in about 70 hospitals in 11 countries with hopefully 500 sclerodermians. Each patient will be followed for 3 years. Results should be concluded in the year 2013. So that's it. Pretty cool.

 

So, in light of my recurring shortness of breath and the anxiety it evokes in me, and since early detection of PH/PAH is important in treatment and prolonging life, I think this study couldn't have landed in my lap at a better time. It's probably no coincidence that my doctor got the "green light" less than an hour before my appointment, at which time he asked me.

 

I want to thank Shelley B) (smart smiley) for clearing my brain fog :huh: (confused smiley) in the identification of the thingy that clips onto your finger and measures your oxygen saturation level. OXIMETER!

I knew that once. :( Really. I did. ;) I gotta get me one of those.

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Bigs

Good Sunday morning all,

 

Jammie Day. Catch up on housework and laundry day. Reload the weekly pill container day. Rainy Day. Procrastiblogging day! :) Wish I had a laptop so I could curl up in my recliner and blog away instead of sitting at this hard, cold, uncomfortable desk in the kitchen.

 

Basketball season comes to a close and Baseball tryouts are next Saturday. My favorite sport of the season. Not to brag, but my boys have been blessed with exceptional athletic abilities which makes watching them even more fun for mom. Big One will be trying out for Majors and it will be Little One's first baseball season (T-Ball last year). I am starting to stress about how I will get them to practices and games and am hoping they will have their practices on the same days and their games on different days and that my boss and co workers will be kind enough to let me off early enough to see their games or else I will go crazy!

 

I got flowers for Valentine's Day! I haven't gotten flowers for Valentine's Day since my high school sweetheart worked at a florist. My flowers came from my Little One's Big Brother, of the Big Brothers Big Sisters Program. The card said, "To the best mom in the world". That really made my day. It was a Saturday and I was working (as usual) when the delivery came. I had a customer so I couldn't read the card right away, even though my customer urged me to. Just so y'all don't get the wrong idea, he's much older than me and happily married. But it was kind of fun wondering who sent them in those few minutes of anticipation.

 

Both of my boys have been perfectly matched with Big Brothers. They are pretty amazing people. My oldest and his Big just had their one year match "anniversary" in January. Over the past year they have gone to movies, swimming, trail bike riding, scuba diving, and built a tree fort together in the backyard. Later this month he is going to take Ryan flying. He is a commercial pilot and former flight instructor. They also have started building a sailboat.

 

Little one's Big is a retired businessman, married, with two grown boys of his own. Together, they play all kinds of sports, go exploring downtown, and have started a lower level addition to the tree fort. They like to ride with the top down in his Porsche. Yesterday he took both my boys to their basketball games in the Porsche with the top down. As I followed them in 'Ole Betsy, I laughed out loud at how my boys are riding in Porches and flying airplanes! Who would have thought ?!

 

Well as much as I wish they would, those chores aren't going to do themselves....

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Goals

Short term goal: stay in my jammies all day. Long term goal: stay in my jammies all day every Sunday.

It's 2:30 pm and so far I have accomplished my short term goal. Even went out to breakfast in my jammies. Our local cafe gives customers 1/2 price breakfast if you show up in your jammies - but well that's once a year in February and it wasn't today, but I didn't care. And nobody else did either. I like that in a town. Of course my jammies are flannel pants and a tee shirt so I just blended in with the rest of the crowd.

 

Biscuits and gravy, scrambled eggs with bacon. When the waitress asked me if I had enough gravy I had to think: Yes, I had enough gravy before you even put the plate in front of me. The proof is in the pudding or rather in my thighs. The pudding is in my thighs too. I need to come up with some new goals.

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Time

Little One is right. I work too much. Either that or there aren't enough hours in the days. I am constantly playing catch up, at home and at work and with sleep. How nice it would be to be able to stop the clock while I caught up on everything. But if I could do that, then why don't I just materialize a clone?

 

Why not for every hour we work, we get an hour of free time? Bliss time - time to do whatever we want to do, not what we need to do. In a perfect world... With my hours I would visit friends I never get to see. Play with my boys. Go to the ocean. Read. Redecorate my house, my yard, myself. Drive to Alaska. Take pictures. What would you do with your hours? Do you have hours you are not using? Can I use them?

 

Time, more than anything else, governs our lives. Do we manage our time or does time manage us? I had a Sociology professor who made us really think about time. He said if we all had all the time in the world or if time was not a factor we could all be millionaires.

 

Time management: our next topic at the staff meeting. I am looking forward to it.

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Five Lessons and a Gripe

Lesson #1: Just because the phone rings doesn't mean you have to answer it.....especially when you are asleep on the couch and jumping up to answer it means that half way across the livng room, your knee will give out and send all 190 (okay 200!) pounds of you flying at top speed into the wall and when you reach out to catch yourself on the window sill, your elbow will buckle leaving the telephone stand to break the rest of your fall onto your ribcage.

 

Lesson #2: Just because the base of your left thumb swells to the size of an egg and you can't move it, doesn't mean it's broken.

 

Lesson #3: Just because your ribs don't hurt that much today, doesn't mean they won't hurt a lot tomorrow.

 

Lesson #4: When the doctor says soak your toe 3x/day, do it.

 

Lesson #5 Just because your ribs hurt a lot tomorrow, doesn't mean they won't be unbearably painful the day after that, rendering you nearly immobile and unable to laugh, sneeze, cough, clear your throat or breathe!

 

*****************************************************

 

Gripe #1: Regarding flourescent bulbs - When I turn a light switch on, I want to see right now, not 5 minutes from now! (but in the name of conservation, I guess I can cope <_< )

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This week

My cat decided it was time to take down the holiday decorations - at 5am this morning. Then he serenaded me with my son's guitar. Why did I decide it was a good idea to get a cat?

 

We had a windstorm this week that blew my glass top patio table over and shattered it. I stood at the kitchen window and watched it happen. It was like slow motion. Nothing I could have done to stop it. Surprisingly, I wasn't all that upset about it. I'm sure I will be when summer comes and I'm eating out of my lap. I was mostly perplexed about how in the world I was going to get a million pieces of glass out of my grass. When I came home from work on Tuesday it was all cleaned up! Two of my dear sweet neighbors had come over to walk the dog, saw the mess and cleaned it up for me. Now what do I do to deserve such precious people in my life?

 

Had the day off Wednesday. Really nice to have a day off in the middle of the week to take care of business that can't otherwise get done on the weekend, and nice to do it without kids. But a midweek day off just means I'm working Saturday but that's okay other than the fact that it's Thursday and I haven't arranged childcare yet.

 

Got my 2007 tax return back (long story, don't ask!) so after going for months without any food in the house I went to the warehouse store and stocked up. When I saw, for the first time, the checkout gals loading a pallet cart for me, I was frightened of my total! Just under $300 with a coupon. Shouldn't have to go back for a very long time. Also got caught up on all my bills. Feels good but still broke.

 

Well back to work today gotta go......

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Happy New Year

Family made it here for the holiday and we had a great time. One of my gifts to the boys was a bedroom makeover. I wrapped a paint tray and paint samples along with a note. Turned out that it ended up being a gift from my sister and dad. While I was at work Monday they did the whole thing for me. The boys had a great time. They ended up trading rooms and ever since they have kept their rooms immaculate!

 

Spent New Year's Eve at my sister's house. It was nice to get out of town for a change. Last time I left the Peninsula was 5 months ago for my doctor appointment. She spoiled us with a big ham dinner New Year's Eve and a champagne breakfast New Year's Day. Then we went out to see a movie. It was a nice little getaway.

 

My little one has been crying that he misses his mom. I work too much. I am always gone and I never play with him anymore. So yesterday we rigged up his bike with duct tape and a paper towel roll so that it sounded like a dirt bike. I really miss doing stuff like that. Made me long for summer as it was nearly 10 below outside! Or at least it felt like it.

 

I've been spending my weekends one day cleaning house and catching up and one day doing nothing. Little one says all I want to do is watch football. Even though I'm here I guess I haven't really been here for him. Gotta start planning things to do just the 2 of us.

 

Resolutions. I have a lot of them.

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Rotten day and ouchie toe

Today was doomed from the get go. Yet with each little, (medium and big) setback, I kept a positive attitude and kept telling myself, "It's just a bump in the road. Fix it, learn from it and don't let it ruin the whole day." Like water rolls off a duck's back, I let the day's mishaps and frustrations roll off of my back until the day was done. And then I took 10 minutes before I picked up the kids and sat in Betsy Big Rig and cried.

 

Okay, good to go for another round of life. Today was really, really not good (to put it nicely). I am going to give myself a pat on the back here for handling the day with patience and maturity and professionalism in the face of total frustration and impending meltdown. I am just thankful that it wasn't worse than it was because it easily could have been. And I know I was not the only one with the same kind of day. It's nothing that a glass of wine and a good night's sleep won't fix.

 

Well I failed to mention to y'all that I did go ahead and have pinky toenail cut off. Good days and bad days with it so far - a pretty long healing time! Yesterday was the first day since Nov. 27th that I walked without a limp. Been walking on the ball of my foot to avoid putting weight on pinky. This is best accomplished by keeping knee from bending so I end up looking like Frankenstein. You should see me go down the stairs at work! Then I decided it was time to get the sock fuzz out of the wound with a cotton swab. Yeouch!!! Back to my limp again.

 

For those of you who have never had to have a toenail cut off I will tell you it is an amazingly painless procedure - until the numbness wear off!!! You would think that soaking 3 times a day in warm water and epsom salts would be soothing for such an operation. Think again. It is excruciating! I had to leave out the epsom salt and still...not exactly pleasant. But, I sucked it up and took it like a woman. Looking forward to the day when I won't have to limp again though. I'm starting to develop a tingling and numbness in my ankle from avoiding the outside of my right foot. I'm also growing weary of answering people's questions of how did I hurt myself. It's just a little gross to discuss with near strangers. You all, I don't mind. You all know I'm gross.

 

I tried simply telling people that I had some minor foot surgery and they just get nosier. They want to know all about it and then they always have their own story to tell. I'd love to share one of the most hilarious stories I have ever heard with you but since it is not my own I don't believe it is allowed here. I'm not so sure this particular story isn't just an urban legend but either way, I would be someone telling someone else's story about someone else. I guess that would make it pretty anonymous however. Just trust me. It was F U N N Y (and meant to be).

 

Oh the holidays......oh the meddling weather. I will be lucky to see my family on the holiday with the roads the way they are. Sis and I decided that my trying to pick up dad from the ferry on Wednesday after work was just not a safe idea, even with Betsy's four wheel drive. So, dad will come with Sis and brother-in-law on the 25th. The first such holiday eve ever, without my dad - so sad. But I guess I just have to look at it not as breaking tradition but as starting a new inclement weather tradition. The boys and I will have to do something special just the three of us. I am just bummed that I am going to have to miss about 1/2 my annual designated dad time due to having to work and 2 feet of snow on the roads.

 

Must sleep now. Tomorrow is another day; another opportunity to start fresh.

barefut

Procrastablogging

I have what's left of tonight and what little time I will have after work tomorrow to clean the house for dad's visit. There is a list as long as my arm of stuff to do. I will have to shave it down and prioritize it into a list as long as my pinky for the amount of time and energy I actually have to get anything done.

 

1. unclog master bathroom sink

2. clean master bathroom

3. reclean boys' bathroom

4. wash dishes

5. mop kitchen floor

6. clean out Betsy

7. make up bed for dad

8. finish laundry - wash/fold/put away

 

That's about as long as my pinky right there. But there's also the holiday stuff I have to think about too....

 

1. menu plan

2. grocery shop

3. finish gift making

4. wrap gifts

5. purchase stamps & mail cards

6. have flowers sent to grandma

 

I am officially overwhelmed. How did time get by me this year? I usually start holiday planning the first of October because my oldest's birthday is in December too. I put his birthday party off until January this year so I really don't have any excuse for procrastinating all my chores other than maybe pure laziness - oh wait! No such thing as laziness for a sclerodermian. I am pacing myself! That's right. We have that privilege as sclerodermians to eliminate the word "lazy" in any form from our vocabulary when referring to ourselves.

 

So here I sit, pacing myself, and pacing myself, and pacing myself.....

And not knowing where to even start; I started procrastablogging. :P

barefut

I was born in the Midwest and I have seen their snowstorms and this is definitely one of them. How it got itself way over here, I do not know. I think it's lost.

 

The forecast calls for 70 - 90 mph winds in some places (one of those places just 15 minutes from me) and power outages to go with it. Right now it is snowing hard and blowing. We haven't seen this much snow around here in about 20 years. And the cold! 14 degrees the other day -- who knows what with the wind chill. My Raynaud's has been behaving pretty well up until the other day.

 

My dad's flight had to turn around and land in Boise tonight. We had no contact with him for about 2 hours after his flight was supposed to be here and didn't know what was going on. But he's all tucked into a hotel now and will call my sister tomorrow when he gets to the airport. I really hope they can make it to my house for the holidays!!!

 

I hear 'transplanted' and visiting Midwesterners say, "This is nothing. You Northwesterners freak out at the first flake." Well, yea. We're not used to the white stuff and have you seen the hills in Seattle? Where in the Midwest would you find 60+ degree inclines as a general rule? In fact, the other day, there was an accident in Seattle where 2 tour buses collided near an overpass and one of them ended up with about the first 1/4 of the bus hanging over Interstate 5. Everyone got off safely but if you could see the pictures... I'll bet the driver thought for sure it was all over.

 

The boys are sure enjoying the snow. Two snow days, Thursday and Friday added on to their holiday break. Wet clothes into the dryer, dry clothes on, hot cocoa warms them up, then it's back outside for another round of sledding and snowball fights.

 

Found a frozen rat on the patio this afternoon and another one, barely alive, hiding under the lawn mower. Kinda cute little guys - except for their creepy tails. The kids said they found a "pile" of frozen rats in the ditch when they were sledding. EEeeew! But still, poor little ratsicles.

 

Tired. Must sleep. Blog at 'cha later.

 

Stay healthy, happy, safe and warm!

barefut

Sclero Rant

After reading Lori's post on losing her husband to scleroderma I had to take timeout again for a good long cry. Every time I hear of this disease taking someone's life I feel like I have lost a member of my family even though we have never met.

 

My heart aches for the families who have lost their loved ones to this ugly, unpredictable, disease. Families whose only consolation is that now their loved ones are no longer suffering.

 

And then I get angry because its not fair. And then I want answers. I want more money for more research and I want answers. I want to know why scleroderma? I want someone to just fix it. I want a cure!

barefut

Well I managed to scavenge rides from people to get to and from work on Saturday and Monday. When my sweet neighbors saw me getting dropped off Monday evening, I got a call as soon as I got in the door:

 

"Are you a single mom in need of a vehicle?"

 

"Yes..... Why? Do you happen to have an extra one lying around?"

 

"Yes, we'll bring the Bronco over - why didn't you just ask?"

 

Why didn't I just ask? I did think of asking but couldn't bring myself to. It felt like I would be asking too much. Apparently not. In fact, they offered to tow Betsy home to save me the towing charges and the next Saturday he brought her home all fixed! All at a cost of $70 for the part and an hour and a half of his labor. Where my FORMER mechanics came up with their $700 estimate I will never know because I am never going back to them.

 

I am just simply blessed to have such kind, caring, thoughtful, generous, neighbors. The world needs more people like them in it. I hope I can be there for them someday as they have been there for me. This neighborhood is my home. These people are my family. We look out for each other. That's the stuff that makes me cry in movies.

 

On Friday when I broke down in my co-worker's office, she helped me apply for an auto loan right away. I have been wanting a more economical car to get around town - nothing fancy and under $5000. I figured now was finally the time. It usually takes something like this to get me in gear on things I should do.

 

In the mean time I replied to my dad's email; "How are you?" So I told him. Next thing I know, I am being offered an interest-free loan and a monetary gift to boot! After Betsy came home all fixed, dad said the offer still stands and urged me to take it.

 

Letting daddy buy me a new ("pre-owned") car is not standing on my own two feet as I really want to do. Even though I told him I would still accept his generosity, because he wants us to have a safe reliable car; I am having second thoughts about it, contemplating how it will make me feel.

 

Again, what can I say? I am blessed to have such a kind, caring thoughtful, generous dad. I miss him and can't wait to see him on his holiday visit.

barefut

I Cope?

It was a Friday and I had a meeting before bank hours at another branch in town. When I went to leave, 'ole Betsy wouldn't start. I hitched a ride with a co-worker as she was leaving. My co-worker let me borrow her car on my lunch break to see if I could get Betsy started. I couldn't. Still, I wasn't panicking. I was sure that my mechanic would be able to just wiggle something and away she would go. After all I had just spent $2500 on her in the last year, almost everything was new, what else could be wrong?

 

I dropped off the keys with him and said call me. When I didn't hear from him by late afternoon, I called him. I was not prepared for what I heard on the other end of the phone. Fuel pump. $700. That will teach me to be optimistic. You'd think I'd have learned by now, to always expect the worst and then be pleasantly surprised. Somehow, I had forgotten this; my way of life. Now here I was at work, with 3 1/2 hours to go until closing time, with a quivering lower lip and and tears about to explode. I heard myself say, "I can't do it. I can't do it anymore". I hung up the phone, walked into my co-worker's office, sat down and released the floodgates.

 

She was such a sweetheart, gave me a big long hug and let me cry on her shoulder until I regained my composure. It felt like I was crying for more than just a broken down vehicle. I was crying for all that it meant for me to be without a vehicle. I was going to have to ask for help again, which to me means being a burden on someone, and just as I had begun to stand on my own two feet. Did it ever end? How in the world was I going to cope through this one?

barefut

I Cope

As I lay in bed last night, I thought about coping. Kind of eerie how when I read Barb's last blog, the word cope kept popping up. Sometimes we seem to be on the same wave length. Then again, coping is a common thread amongst us sclerodermians so maybe I shouldn't read too much into it.

 

When I was a sophomore in high school I made myself and my best friend a T-shirt for gym class that said on the front, "That's okay" and on the back, "I Cope". I think people liked it. Teachers and peers alike were always commenting on it. I actually still have mine, sort of a souvenir of the time.

 

Last night I thought about that T-shirt and what I had to "Cope" with in high school compared to what I have to cope with now. I realize everything is relative. Being a sophomore in high school is no piece of cake, although at the same time, 16 was one of my best years ever. I wouldn't mind living 16 again. Especially if I could do it knowing what I know now.

 

The old saying, "What doesn't kill us makes us stronger" comes to my mind when I think about all I have had to cope with over the past 15 years. I really do believe that. I do think I am stronger because of all I have had to put up with. And you know what? I am kind of proud of myself for surviving it all too.

 

Survivors. We are all survivors. Not only of scleroderma but of life. I survived my mistakes and actually learned from them. I have had to learn to give myself a break for making mistakes too.

 

Life is a continual learning experience. I have to look at it that way. Especially after having to cope with scleroderma. I ask myself, why am I supposed to be carrying this burden and what am I supposed to be learning from it? How am I supposed to become a better person because of it? Let me count the ways.......

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