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
:emoticons-yes: I'm writing this little rhyme
To see if I get in this time
It's been some while since I was here
So before I start I'll pour a beer!
Bet you thought I'd been real sick
And No! I haven't turned alcoholic
Just my twisted humour I really do not drink
But getting onto the forums has really made me think!
I've had a few problems and "Boy" I've been so busy
It's really no wonder I haven't turned to the fizzy
Doing stuff for the radio and busy being in demand
Back in November, after seeing my boys dig through the dirty laundry for the umpteenth time for something to wear to school, I had an epiphany, or a breakdown, whatever you want to call it. I collapsed on the couch in utter defeat, scanned my living room, which looked like a bomb went off in there, and I finally decided that something’s got to give. I have got to start taking better care of myself and my boys and the only way that is going to happen is if I use my Family Medical Leave to reduce
My seven year old caught me crying over my keyboard while reading the John’s Hopkins website on Myositis. "Mom, it says, ‘medical treatment’, what happened?” I hear his sweet, innocent little voice say. I wipe my tears and tell him, “Nothing happened, it‘s just that my hips and my shoulders and my elbows hurt and I’m just reading about how to make myself feel better“. That seemed to satisfy him. He gave me a hug and went back to his cartoon.
About 50,000 Americans have myositis; apparently e
Listening to my 7 year old sing in the shower.
A good cup of coffee.
Snuggling on the couch with my boys.
The sight of my 12 year old and his dog, snuggling and fast asleep on the living room floor.
A clean house.
Cooking, coloring or puzzles with my boys.
Sitting in my recliner at the end of the day and looking at my boys' school work and art work.
Good hair days.
Getting into the car in the morning after I cleaned it t
This one gives me temporary pain free mobility and a bit of endurance but also irritability, sleepless nights and weight gain, not to mention silent other evils.
That one helps keep my fingers and toes from falling off but gives me dizziness, nausea and low blood pressure.
This one keeps me from digesting my esophagus but may be the culprit of my irritable bowel.
That one helps keep my body from attacking itself in countless ways but may also be the irritable bowel bandit.
In spring I used to plant a vegetable garden, and sweet peas and a pumpkin patch.
In summer I used to mow along the road and keep the blackberry bushes at bay and water my grass and flowers.
In fall I used to put away the patio chair cushions and hammock and prune my rose bush and rake the leaves.
In winter I used to feed the birds and watch them from my kitchen window, and decorate for the holiday with colorful lights and bake cookies from scratch.
So much going on
And big stuff too
Don't know where to begin
Don't know what to do
Ready for changes
Something's gotta give
Walking these edges
Is no way to live
My head is aching,
No, splitting in two
What have I done?
What can I do?
How can I know
If my decisions are good?
How can I make
A peek to the future
Would be so kind
Is it too much to ask
For some peace of mind?
Home with a sick kid today, fever, vomiting - hope it's not piggy flu! Just got a call from my boss that they received the revised FMLA paperwork from my rheumatologist supporting my request for reduced work hours. I never saw a copy of what my doctor wrote but the letter from my employer said 4 - 6 hours a day 5 days/week. I was told not to come in on Monday until 2:30pm (weird) and I would get my revised work schedule then.
I'm kind of dreading that because I asked for 8:30 - 3:30, and
I've been so busy with this'n'that, I've hardly had the time to sit down and relax. The radio work is exhausting but great fun and I'm finding myself getting more heavily involved than I'd set out to do. I was made Marketing and Production Director because of my previous business experience and although my services are voluntary, I'm thoroughly worn out!
I've interviewed famous and not so famous people over the past few months, the most interesting people are usually the ones who are not fam
Yet I never really left. I haven't blogged for awhile not because I haven't had anything to blog about but rather the opposite really. Too, too much stuff. Topics swim around in my head as I go about my blurry days. Some of them get jotted down on little scraps of paper and stuffed into my purse/briefcase/lunchbag/first aid kit/pharmacy, only to get thrown out at the weekly purging.
If you looked in my waste basket you would find:
(Just to name a few...)
You know you
Brrrr! I'm so cold. No matter how much clothing I pile on it makes little difference! I feel about as bare as the trees at the moment and yes, they are dropping leaves at the rate of knots making my drive extremely slippery. My fire won't go and I'm fast losing patience with the thing. I piled on loads of wood and even a firelighter to boot but it flickers with a solitary flame and enough smoke to send signals.
My yearly appointment is one to look forward to tomorrow -- not! An early morning
How do you define a hectic week -- taking the kids to school, hospital appointments, job commitments and family duties. Just stop and think for a while -- What about me?
I'm burned out, no energy and feel like I've been hit by a 37 bus full of passengers and in the midst of it all I can't remember my hospital appointment date which I'm sure I've missed, my hair salon appointment or where I'm supposed to be with who, where and when. If ever there was a case for short term Alzheimer's, I'd probab
Something's going on here of which there is no cure
I'm wandering in blog land, don't belong here I'm sure
I really feel umwanted, the gremlins locked me out
And even with a little push my presence was not about
I tried in vain but to no avail
My fingers turned a whiter pale
I tapped and screamed but the site wasn't playin
"Don't recognise you!" I think it was sayin
So I sat and sulked beyond despair
Thinking, I would never get there
My fingers numb and patience thin
I was never go
"No one realises, even myself sometimes, how much of an impact a chronic disease can have upon a person." - Barb Lowe
I was going to blog about what I had been up to this past month but after reading Barb's blog this morning, I have another agenda.
You said it sister! Sneaky, insidious, scleroderma. I think that should be the official diagnoses - SIS. Barb talked about how she puts on a good show of hiding her visible symptoms. I want to talk about the impact of invisible symptoms.
Well the day started with me arriving at the station right in the middle of an interview with the Mayor. I was set upon by burly bouncers and ushered outside until the co-ordinator realised that I was a presenter and not some stray fortune seeker. Cameras everywhere, cables, lights and people talking in corridors. I recognised a TV presenter, much smaller than I imagined and very stern, not at all like the face I knew from the box! There were lots of fingers on lips, "Sshhh!" and whispering. I w
There's a definite nip in the air! I went outdoors this morning just to let my hubby out of the drive, my car was parked behind his, and I could see my breath. The car was damp and cold and, yes, my Raynaud's was in full bloom. The end of summer is here. "Huh! what summer?" I hear some of you scream, well you'd be right of course! We've had little or no summer at all, perhaps one or two days that actually felt like it should and my, how the weeds grew!
My skimpy tops stayed in the drawer and
Trying to write this is nothing short of impossible. The kitten loves the keys and he's walking all over the keyboard. I got up early because he was making the most awful wining sound, only to be greeted with a huge "meeeoww" as I walked into the room. My daughter had thrown him out of her room in the early hours, a playful kitten at 3 am and a grumpy teenager is not a good mix. He's adorable such a character and you can't help but like him but the attention he requires is nothing short of dev
I can't help but be a wee bit excited. It's been a funny old week! We got a kitten straight from boot camp, believe me he's small but a huge handful! Then, I've had the most amazing news, --- I'm about to be on TV, yes me! The BBC are coming to the radio station and filming a documentary about our station -- we are rather good you see!
The station runs purely on volunteers and over the past 12 months we've grown in popularity, not only locally but world wide. I now have my own show on Satu
Funny, how an eighteen year old can flicker her eyelids and cuddle in such a disearning way as to sweigh my hubby into submission and me fighting her corner in a way I haven't done since she was a nipper. Her constant plea to own a kitten, fell upon deaf ears on almost a weekly basis and I don't know why but he relented almost out of the blue?
Before long we were travelling high into the Pennine region way above Pendle Hill on a rainy, misty Wednesday evening in search of a Persian Cat Breed
Up at 05.30 in the morning to the sound of the cockeral's crow, aching leg; no, killing leg and a shoulder that refuses to move. It's going to be one of those day's!
Wiping the sleep from my eyes is a joke, I never got any. I heard the clock strike every hour and I tossed and turned like I was on a spit. I hate middle age and I hate scleroderma!
My mum used to complain about aches and pains, indeed I remember thinking "I hope I don't end up like that!? Guess what? I have! I've become my mum
I wrote this rhyme for jaxs and you
Here's hoping I don't come down with flu
I hope no offence at the following line
For the flu I don't want happens to be swine
There's so much about it, It's everywhere
In the papers huh! like they care
It's all bout statistics and I hope I'm not one
I think I'll stay in till the virus has gone
A dose of the plague I'll do without please
Ill be off to the doctor's if I as much as sneeze
Talk about stories and this one is big
All is not lost!...... What am I talking about? This blog will sound like an advertisement for get up and go and I can assure you it's not!
I can't believe how much my life has changed in the last 10 years and none more so than in the last few weeks. There I was sat at home trying to twiddle my thumbs. I was thinking my working life was over and perhaps I had nothing more to give. I have an autoimmune disease and fast aproaching 50, what had I got to look forward to -- let's be honest?
Wow. This sleepless near Seattle thing is getting old. Today will be fun at work - and THE boss will be there all day - quizzing us. Boy I can't wait for the sleep deprivation hangover to start. The thick headed, brain fog and headache, the burning, swollen, bloodshot eyes, bumping into walls and spilling my coffee, the extra loud ringing in my ears, dizziness and nausea, the looking like a ditzy idiot to everyone. Oh! And evaluations are this week too. Yessiree, can't wait for all that f