Not long after my first son was born I started having a lot of unexplained muscle pain and fatigue. The year was 1997. Soon, my hair started falling out - by the hand fulls. Not in clumps but overall thinning, at an alarming rate. I went to a dermatologist and he said that since I was nursing it was probably a lack of vitamin K. So I took vitamin K.
I was having lower back pain and since I had been diagnosed with a bulging disc from a work related injury when I was 5 months pregnant, I w
I'm tired. So tired. Tired of nausea, of living in the bathroom, of pain, of this dreary weather. Tired of being tired. Tired of scleroderma.
Today I gave up. I let scleroderma win. And it felt good. Sometimes I just don't have any fight in me. Some warrior I am. I don't even have the energy to be angry. And you know what? I don't care. At least for today, I don't care.
Sometimes we need a break and we never get one from Scleroderma but at least we can give ourselves
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
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, no
Heating on! Now where are my boots?
Those flakes were growing in size, Mmmm! it may be sticking. The cats certainly thought so. Note I say cats yes I now have a menagerie! One Meowing, one stretched in front of the fire and one sat on the work top -- Sat on the worktop? "Hey Geroff"
Beastly thing, I've just spent ages cleaning the worktops and trying to get rid of the smell of curry from last night. The containers are in the bin and I'm not going out - not yet to put them in
bagels and cream cheese
instant breakfast drinks
"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
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?
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?
There's absolutely nothing remotely humorous about a Hospital or doctor's appointment. It's just something you get very used to and - yes we do need them. I've been to-ing and fro-ing for much of the 13 years since diagnosis. Monthly appointments and stabbed so frequently for blood that my body is a not a temple but a colander. I've driven home with arms aching and bruised and the last time I was there - electrocuted! Yes, I testify, I was actually shocked, not in a surprised sense but physicall
I've never been the brightest button in the box, according to some. I was never top of the class in high school except one subject where I excelled my own expectations and probably that of the teacher too, Biology. Yes I could sex a Frog, knew the gestation period of a Newt and claimed top marks for drawing an Amoeba - it was rather good, I had all the shading in the right places.
I was good at drawing too but I was ridiculed in Maths, numbers never added up for me. I never seemed to have enoug
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 v
It was meant to be a quiet day. I hadn't reckoned on my daughter having the day off from work and I found myself rolling out of bed to the sound of a 7am alarm and wondering why she was still in bed?"You don't listen Mum. I told you last night it's my day off. Now I'm never going to get back to sleep" Well, since I was already up, I might as well stay up and Steve was already heading for the bathroom, so the next question would be:"Make us a coffee" It wasn't long before Steph joined us enquirin
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 f
Here's my first attempt at a blog for almost 3 years. I'm a bit rusty and corroded around the edges but none the less here goes!
I live on a farm of sorts. I have a house that is begging to be finished, a Husband with gout, a 22 year old Daughter with boyfriend in tow, one house cat, one visiting cat and one Goat. I have 3 walls, one conservatory with no doors and our 6th December Holiday under renovation but we are getting there.
I have Raynauds, Scleroderma, Cervical Spondylosis, Arthriti
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 ac
Most of us of a certain age would have been saddened by the recent death of one of my heroes, Neil Armstrong, the first man to have stepped on the surface of the moon. Heroes are hard to come by these days; they appear to be in short supply. If you were to ask people if they had a hero, someone they admire and respect, they would all give their personal take on the subject; after all we are so very uniquely different.
I think Neil Armstrong was a reluctant hero. He shunned his celebrity stat
So I recently took delivery of not one but two chocolate brown, matching the furniture, commodes! At the age of 44, when most people are taking delivery of designer products, wide screen TV’s, clothing or food, I was taking delivery of commodes...but then, again, I am living in the weird ‘n’ wacky world of...
Both of my commodes are for the purpose of widdley-pops only, in other words urine not A N Other. One is near my bedside and is usually sat upon just before dawn and the other in a diff
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
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
How could you possibly fail me? You’re supposed to be good to go from beginning to end, at least that’s what you come to expect and it’s certainly what they promote and imply if you do what you’re told!
I did, I did! I went to the gym regularly, I was a jogger, I ate healthy, and I only smoked lightly for a couple of years. From the age of 30 I was acutely aware of Ma’s heart problems, first heart attack prior to 50 and to date 3 heart attacks and a dead artery (if I have to hear about the c
On day I had a life and then... Na, too clichéd, need something different. Once upon a time there was a (insert description of me) and she was (insert description of my day and make sure you include that tall latte or two) then along came scleroderma (insert your own expletives here and make sure they’re a satisfying mouthful)...
In August 2012 I will have been diagnosed with systemic scleroderma and morphea for five years. In my early days medical professionals and others bandied about what
When living in Portsmouth in Hampshire, England, I happened to take a walk near my home by the sea; I travelled through an amusement park that was near the beach. There were a number of rides for the general public to enjoy and about 40 feet overhead was this very odd looking roller coaster ride. It's steel rails had clearly seen better days, the iron pillars that held the ride up had been exposed to the sea breezes and were rusty and slightly corroded and in need of some paint. The rails that
Awhile ago my husband and I and I went to my favourite shopping centre, favourite centre because it contains my favourite clothes shop. Favourite clothes shop because of the fabulous clothes and just as importantly now fabulous customer service. I am always in my assisted wheelchair when we go and staff are so attentive and polite, in the changing room they always help me with zippers, buttons and so forth. They treat me with respect.
One of the hardest things I have found about being disabl
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 lov
Er, um, well it looks like I am now an ISN Blogger! How on earth did that happen? Well I asked a certain ISN Prez what she thought about it and hey presto here I am. Oh dear, oh dear...more for you than me trust me!
But I don't live an exciting life like CFM Babs or raise two fine children (stepsons all growed up) like Barefut so what am I going to blog about, well we will have to wait and see for sure!
All I can say for now is testing, testing, one, two, three...
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 e