Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.

barefut impressions


The Grass is Always Greener....

Posted by barefut , 16 March 2009 · 846 views

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!



Posted by barefut , 26 February 2009 · 929 views

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.



Posted by barefut , 22 February 2009 · 896 views

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....



Posted by barefut , 08 February 2009 · 863 views

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.



Posted by barefut , 05 February 2009 · 907 views

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.


Five Lessons and a Gripe

Posted by barefut , 24 January 2009 · 894 views

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 <_< )


This week

Posted by barefut , 08 January 2009 · 845 views

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......


Happy New Year

Posted by barefut , 04 January 2009 · 879 views

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.


Rotten day and ouchie toe

Posted by barefut , 24 December 2008 · 858 views

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.



Posted by barefut , 22 December 2008 · 931 views

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

Search My Blog