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 a break from fighting. It's exhausting. Physically, mentally and emotionally exhausting. So today I surrendered and just sat in my recliner all day, staring at the walls, napping, and staring at the walls some more.
It's called depression. I take medication for it but it's still always there, lurking in the shadows, waiting for a chance to jump out and take over mind and body, leaving me in a near catatonic state. I become one with the chair upon which I sit. A piece of furniture. At least for today. Because like depression, optimism and hope are always there too. Lurking in the shadows, waiting for their chance to jump out and strangle depression. At least for a day.
Probably the hardest thing I've had to do in fighting scleroderma, is fight the depression that goes with it. To tell yourself, in your darkest hour, that tomorrow is another day and you won't feel like this forever, takes faith. And my faith comes in knowing that I've been here before and I've survived. Time and time again, I've survived days of despair. And I remember what optimism and hope feel like. Even though they seem so far away right now.
Tomorrow is another day. But for today, I let scleroderma, and depression, win. Because sometimes we need a break from fighting. And it's okay to surrender - to rest your body, mind and spirit - until optimism and hope come out of the shadows to help you fight - and win again.
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 the dustbin outside. I can't find me boots!
"Oy Get off me table"
I despair! The door is opened but the cats just look at me as if to say "Are you crazy - We ain't going out in that"
Sigh!! Clean the table again and then I see paw marks on my cooker "Oh No!" Clean the cooker.
The black cat rubs my leg and then around around my feet I cannot walk. I know what they want -- food!
20 tins of cat food later, half a leftover Chicken and the Turkey from the festivities, no wonder they think I'm a push over! I'm a vending machine for food - they Meeoww and I dispense. Better still let it snow and we can stay indoors all day.
It's getting so dark now - looks like thunder. I don't like thunder it scares me, ever since my grandma told me of ball lightning and how one chased her through the house. She even turned all the mirrors round. No wonder I have a phobia? I have visions of a ball of fire raging through the house but I can't turn our mirrors round unless I move the wall as well, like something out of Harry Potter.
CRACCK! Whoooo there it goes! I'll stand here away from the door. Hailstone, it's like the end of the world - I'm so dramatic aren't I? Another rumble - how many seconds are you meant to count to judge the distance of the storm? It looks really bad out there.
"Hey, get your head out of that bin!"
There's the back end of a cat with no visible head in the bin licking the curry containers..... I give up!
Meeow! I'm pulling its back end out of the bin and when finally out, it's tongue is swishing from side to side and sneezing. I reckon it's eaten the Vindaloo....... that'll serve you right!
I grab a tin of cat food from the shelf and I have a following.
"No Squabbling and no stealing from each other."
I can't get the stuff out of the tin and with the cat's head so large there's not enough bowl to put it in, so I scoop it out and it lands right between it's ears and what fun as the others fight to eat it off the cat's head.
Phew! I may get some peace now. The thunder has stopped, Cats fed and I'm having a coffee.
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 not a lack of food in the house but rather the lack of a mom who is able, available or willing to get up and make it for him. I hate mornings.
And this morning I have someone else's sick kid home with me - coughing and gagging and hacking his germs all over the place. UGH. I had him 3 days last week too. We just finished going over the proper way to wash our hands - and when we need to wash them. He's pretty good about coughing into his shirt collar but I am mad that I threw out the child masks I picked up last week - though he wouldn't put them over his nose, he at least wore them over his mouth.
My nerves are fried. A coma sounds nice. I hate that I require so much down time. I swear, if I had no responsibilities to anyone but me, I would sleep for days and when I woke up, I would enjoy complete solitude for weeks before I would feel like I needed to rejoin the rest of the world. And it's not that the rest of my world is all bad - it's not - I love my life. I just wish I had the energy to live it.
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?
He: Because I just want to know how you feel.
Me - instant tears. What sclerodermian does not want to hear that?! From ANYONE let alone their children? Ohhhh I'm going to feel hugged all day. This gave me chills yet made me feel warm all over. And then I thought about what it must be like for him to have a mom with scleroderma.
I would love to interview children of parents with chronic illnesses and put together an anthology. In fact I am composing questions in my mind as I type this.
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 physically, and yes, I was shocked as well.
I'm an old sucker for clinical trials, I just can't say no. Part of me wishes I could! They see me coming. I'm convinced there is a huge arrow over my head as I sit blatantly reading some old discarded magazine about the next doors wife's husband's fetish for sniffing woman's shoes. I can feel the approach is directed at me and I try to bury my head deeper into the story but usually to no avail. That gentle tap on the shoulder and the clipboard under your nose and you are there! It's another Trial and here I go again - Yeah I'll do it! So you spend far more time that you ought to, filling in forms and agreeing to be poked, prodded, and scrutinised all in the name of science. Nothing new for me last time. I'd promised myself a fast appointment. Ask no questions, don't complain, nothing new, nothing changed, still the same - there you go, I'm outa here! But as usual I gave in to yet another Trial about body mass or something like that! See that's me all over, never really ask what I'm getting into.
I signed the sheets, agreed to spend half an hour in a room at the far end of the corridor - where nobody goes!I Had the grace of my appointment with the doctor first and then when she'd given me a dose of hypothermia and a severe Raynauds attack in a room you could refrigerate wet fish in, I reluctantly went for the usual blood tests. I watched in envy as people went in and out like a cuckoo on a chiming clock. You could tell the one's with Sclero, reinforcements were always called to the room, the expert Vein Hunters, surprising isn't it? Where do they come from, are they hiding?My turn next and as I nestle into the chair, so high my feet never touch the floor. I feel I am going to be ejected through the roof but that comes later. I always get the intolerant sort, the one who has had a bad day and everyone knows about it! My confidence and bravery are dumped on the floor at that point. "I haven't had much luck today, everyone is vein-less and I've run out of small needles." "WHAT! You have no small one's??" My toes curl as she rummages through the drawers of the trolley and out comes a needle so big if I had another I could knit a jumper!
The next bit is by far the most painful. The tourniquet. They wrap it so tight around your arm that the blood hits a dam. So with my arm about to drop off and a lovely shade of blue, she smacks my arm with a flick so hard her false nails almost fly off and in goes the needle. There is a "bwop, bwop" sound as she pulls hard back and forth to draw out the blood but the carriage shoots backwards with nothing but fresh air. "Elsie, I have another vein-less wonder" By this time I'm traumatised, in pain and gesturing that my arm is about to drop off through lack of circulation and excruciating pain from the band around my arm. In walks the chief blood sucker with a confident smile and at least a small needle."Have we tried your feet?" "Oh please, not the feet!" "Okay, we'll persevere with the arm then" After about 5 more insertions there is blood. It's dark, thick and unforgiving. It slowly gloops into the tube before finally giving up but they reckon they have enough."Phew, no really Phew!" My arm is aching and I feel abused and my reaction as I leave the room puts everyone in the waiting area on edge. I'm called to the room that nobody ever goes. Following on behind a 2nd year Medic with a clipboard and brand new stethoscope. I'm asked to lie on a couch crisply decorated with a new piece of paper roll and of course with shoes and trousers removed. She places electrodes on my feet and legs and warns me of a small charge."It really won't hurt, we are just measuring fat." The hum of the machine grows louder and louder until she pushes the button and Zap! I jump uncontrollably as the charge resonates through my body and my hair stands on end! "Oops perhaps a little too much that time!" she says "What do you mean that time - do you mean you are going to do it again?" "Yes but I'll do it right this time" I wondered frantically if doing it right meant total electrocution or just a little tingle but she threw the switch and nothing happened so she'd either blown the machine up or she'd done it correctly. I was extremely happy to learn she had indeed done it correctly."See you next time" Not jolly likely, I thought? So fully charged, bruised and aching minus two phials of my precious blood I leave the hospital thoroughly trialled and released on bail till next time! My life with Sclero is never dull!
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 enough fingers!
Thinking back and I am thinking back so many years ago, I have done better than most with very few qualifications. Anyway I digress.
I want to talk about our new arrival, a cat! Yes he arrived over the holidays, hungry, homeless and searching for pity; he came to the right place it would seem.
My house cat was none too impressed by the new cat in Da House so much so that we have a chorus of strange noises emulating from behind the sofa until there is a screech and one shoots at speed into the kitchen, usually my house cat Smudge! She's such a scaredy cat.
Anyhow this stranger needed a name but not before I searched the newspapers for Lost Pets and the local shops to see if anyone was missing him but to no avail so we named him Sammy after numerous attempts of Hugo, Dougie, Hector, and he was almost Fred. but Sammy it was.
That was 3 weeks ago now and he's still with us.
"Stop giving him too much food" my daughter said as she sat stroking him. He has the most gorgeous shiny coat and very affectionate too. Someone must be missing him I thought!
I wondered if he had been, well you know, Done! I reckoned if he had then he must belong to someone. I spent many a moment with a crick neck chasing him until finally announcing that his bits had been removed, much to the amazement and extreme dislike of the cat; well, it's not nice someone chasing you to get a view of your bits and bobs, is it?
He continued to put on weight and was looking more and more like a well cared for member of the family. He was answering to his name and showing affection towards us. Smudge however, was not impressed and the groaning continued.
"He looks like a Leopard" my husband announced! "How much food are you giving him?"
Fact is just the normal although he had gorged himself on left over turkey - he must have thought he was well in here if this is the quality of food.
I was making dinner for the family when Sammy came in purring and rubbing his head against my leg. He then flopped on the floor with such a bump due to his size that I turned around. It was then I realised. He had pairs of teats down each side of his large belly, Sammy was pregnant.
"Oh my, Oh My" I muttered, "He's a She!" How could I have been so silly to think he was a boy with no bits. Of course he didn't, well he wouldn't. So now it's Samantha not Sammy.
So now we are about to have Kittens much to the delight of my daughter who is already volunteering to be Midwife. My Husband is less impressed though at the thought of a houseful of cats and I can't imagine what Smudge will think. She was a solitary feline and now she was going to be an Aunt of sorts. I somehow think she won't be happy
I have no idea when the event will happen? We wait and hope that there are just a few.
We are fast becoming a Cat Sanctuary and a feline maternity unit. I have noticed another cat hanging around in a similar condition.
"It's not coming in" was the warning from my husband but my daughter has other ideas I'm sure. I caught her with a bowl of food trying to entice the cat closer to the house. I am feeding the entire population of my village here.
So it's official. I can sex a Frog and a Newt but not a Cat. Bottom of the class in Biology. I really am losing my touch!
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.
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 enquiring where her coffee was too. I could tell she was about to ask what I had planned for the day by the way she waited for her Dad to leave the room. Guess what was coming next? "Can we go into Town later?" I found myself without hesitation saying yes and with that she went back upstairs with coffee in hand, no doubt counting her money.
I love my days off, in fact I only go to the radio station once a week now. I do miss the company and most of all the warmth, but I found doing more days was just wearing me out and in the end something had to give. I'd been involved with the radio station in the Holiday Celebrations in Town last year. Of all things I get myself into, and I do! I ended up dressed as an Elf; Yes an Elf in full regalia. I was a fat Elf no other way to explain it. The suit was rather big but a welcome size for me because it meant I could wear several layers underneath. Forget the pointy toes on the shoes I was given, it was fur lined boots all the way for me! I thought the effect was rather good until a child asked me if I was Robin Hood? - it somewhat blew me down. "No I'm an Elf" I was glad that we weren't involved this year. I almost got Frostbite in my fingers and toes and I claimed the heater that was backstage of all the fun, even the TV Celebrity from a well know Soap opera couldn't get near. Famous or not, I was there first and it was all mine. "Clear off" The whole event led up to a crescendo of explosive fireworks and the crowd "Oooed and Ahhh'd" By this time though I was aching so much and I looked about as green as the suit itself, not to mention fingers and toes that no longer belonged to me. No, as I reflect I'm so glad we weren't asked this year.
So with the holidays over and things just about getting back to normal I now have a trip into the next town to deliver and a Daughter yearning to spend some cash and spend she certainly did. A designer bag that looked like the sort you got as a kid and cost a whole month's wages and a silver safety chain for her bracelet. I marvel at the young and not a single regret of cost. My shopping list consisted of Cat food, and Milk and I splashed out on some Ham steak for Steve's evening dinner. A whole gallon of fuel for a trip that lasted a couple of hours. So respite for me this afternoon with Steph having gone out with Boyfriend. feet up and a warm computer on my lap. The day is grey but I'm quite content!
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.
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, Arthritis, Fybromyalgia and a broken nail. Besides that I'm fighting fit? I'm also known as Babs.
I was sat here in front of the TV when I decided to write this blog, watching in awe as a guy shovelled copious amounts of food into his mouth for entertainment thinking how much I would be choking if I swallowed a pea.
Mealtimes are a nightmare, My Daughter is Lactose intolerant, My Husband's Gout causes havoc with meal plans and I don't eat and there's this guy eating mounds for a TV programme and we're all feeling nauseous.
"Turn it off" I asked but the options were a film we have seen so many times that I know the script, a game show and I gave up flicking through the channels when a programme about nurses flashed across the screen. Not that I have anything against those Angels, I just don't want to watch!
Things have really changed in the household over the last few years, in fact the only thing that's the same is the hole in my wall although it's slightly smaller of late on account of a glass building intended for Summer evenings being constructed and for a brief time had doors, so I guess we didn't have a hole then.We have a hole now because my husband took them off again and never got round to putting them back! It's only draughty when the wind blows so then we just turn the heating up!
There was a time when it was normal to meet a Goose on the bottom step of the staircase but they have now long gone on account of the complaints received by dog walkers. It was fun!
I had Chickens also. Those went too when I was tired of answering the door to strangers who didn't understand the term "Free Range" I once called them to the yard when an guy started having a go at me on a really bad day and told them off for going on the road. I couldn't quite understand his anger, I did ask the Chickens to comply and they did understand - I think? Anyhow he just thought I had lost my marbles.
My dietician stayed away as long as she could and couldn't help showing her relief when I informed her that the Geese had gone. She's been back and forth more frequently since.
My husband dreams of more Goats, a Ferret and a new set of Chickens. I say nothing and hope it's a passing whim and nothing more. He hasn't mentioned it for a while.
My voluntary job keeps me sane, warm and occupied. I've had days, you know the one's. The one's that anchor you to the bed and no amount of attempts to get up. I have sicky days and achey days and days where I don't quite know where it hurts most only that it does.
"Don't touch me, don't ask me to do anything, it's an off day"
My Daughter bids me Goodnight and I'm contemplating the same. The bed is beckoning me and I have an overwhelming urge to climb into it.
I reckon it's sanctuary!
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....
7 yr. old: "HEEEEEYYYY!!!! WHO THREW THAT AT ME?! THEY'RE THROWING ROCKS AT ME!"
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."
7 yr old: "FRUIT?! WHO HAS FRUIT? I WANT SOME FRUIT!"
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.
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 status, the limelight, wanting to be separate from the ‘man on the moon syndrome’ and get on with his everyday life. Facing the everyday mundane and challenges that scleroderma brings can help make heroes of us all, albeit reluctant, all fuelled up with nowhere to go. We may on occasions feel blasted into some kind of outer space experience, an orbit unknown to us, a whole series of circumstances, psychological trials and relational challenges.
As s therapist I have met many people who, for whatever reason, want to escape a relationship that causes them pain. Some have tried to escape into mood changing substances, some into new relationships and others into whatever takes their fancy. However most people want to just stop and take a look at their relationships, their behaviour and overcome, gain control and get on with living their lives. In my thinking this determination and tenacity makes them a hero, albeit a reluctant one.
Sometimes we need to hide emotionally, deny or minimise the impact scleroderma is having on ourselves and on our loved one. Seeing someone you love fighting to gain control over their body, feelings, mobility and environment can leave us feeling powerless. Sometimes we escape into work, activity, or nothingness, beyond the gravitational pull, floating into space for a time, anything rather than face the evitable loss, hurt and of course grief that follows on like an ugly sister. We recall past experiences, painless, fun times when we had dream as we wait patiently for that beauty which comes with acceptance, that acceptance of chronic illness and all it brings.
Surviving the impact of scleroderma means developing a psychological coping strategy, a kind of temporary agreement with ourselves that does not deny pain, anger and hurt, neither does it blitz these emotions out onto others. If we’re propitious we’ll maybe find another hero who will listen as we take this unexpected and unusual journey. Hero's after all are made not born, they tackle the problem to release the gifts and gifts can come in the shape of people, people just like you!
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 different room doubling as a plant pot holder courtesy of my husband.
Why commodes I hear you say, well it’s not an issue of leakage thankfully but one of comfort or should I say extreme discomfort. You see the gap between waking and needing to pee and being able to get to the bathroom to pee can be a very long time and using a commode means that I can at least provide relieve for my poor thickened bladder. Ensuring that the commode is pre filled with some water and lemon scented toilet cleaner eliminates any odour and with this obstacle overcome I have no hesitation in using it.
You see I used to say how thankful I was to have scleroderma but no joint pain, can’t say that anymore! I find that the longer I sit or lay the stiffer and more uncoordinated I become. Name a joint and it hurts, well that’s an exaggeration it’s mainly shoulders, elbows, wrists and knees but that on top of the foot pain and dashing to the toilet or even a leisurely stroll is out of the question the majority of the time.
As odd as it is to have and use a commode I am pleased to say that I embraced it from the first tinkle even seeing the funny side of things like my camping experiences. My beloved pusscat wakes me up pre dawn, wanting to go out, I open the window for her, but it has to remain so as I always fall back to sleep. Once awake I have to empty my bladder so I find myself sat on my colour coordinated commode, relieving myself with the bedroom window wide open wondering if anyone can see me as I literally freeze my butt off. If I have to use my litter tray you’d think she would.
When I muse over the last 5 years it’s been one shock after the other, one loss, one problem to overcome and I have survived every shock, survived every loss and solved every problem. Doing so has not been a cognitive choice but automatic necessary to keep surviving and something thousands of others with scleroderma do every single day and long may we all continue doing so!
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.
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 ;).... 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!
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 creepy dead artery that she’s walking around with in her chest so do you!) so I was always determined that I would NEVER have heart problems.
Hey Amanda, how’s that working out for ya?
Should have been determined never to have an autoimmune/ vascular disease instead but then I didn’t know they ran in the family prior to having scleroderma. Sometimes I feel like I didn’t know anything prior to scleroderma and now I know lots of things I don’t want to.
Thanks to scleroderma I have myocardial fibrosis which put me into serious heart failure with a 2 year life expectancy in 2010. My ejection fraction was 32% (normal being 55-60%) which went up slightly in 2011 and according to my latest ECHO is now back to normal thanks to implantation of the biventricular ICD in late 2010. Clearly a good ECHO outcome, improvement is a great relief as I figured things would be bad otherwise, real bad, like “What wood would Madam like, oak or maple?” bad. If my ejection fraction had gone down/goes down despite implantation then “Madam wants maple.”
So I was trying to think how do I actually feel about all this? About ending up with the one ailment I worked hard to avoid, heart failure, which I will forever be in because without the biventricular ICD my heart no longer works. About having tests every year, ECHO’s, pulmonary function test, gastroscopy and so forth, the results of which could indicate coming disaster, or that it’s actually arrived, or that, hooray for you, you’ve dodged the bullet...this time. How do you feel standing on shifting sand? In my early days I used to misquote that well known scholar F Gump saying, “scleroderma’s like a box of chocolates, you never know what you’re gonna get”. Turned out to be true. I still don’t know how I feel about all this after 5 years and the thing is it makes no difference. You’re gonna get what you’re gonna get, hazelnut caramel or coconut chew!
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 I now call the medical myth, that after 3 to 5 years scleroderma plateaus, not only is this not my experience but I don’t actually know anyone else who has experienced it either. Sure some get better but it takes way longer than this and the getting better does not mean getting your old life back.
What you eventually do is take the remaining pieces and create a semblance of a life that hopefully can be described using words like quality, enjoyable, different, one tall latte instead of two...
If pithy little phrases aren’t doing it for you right now join the club. The truth is that I am tired of being tired, being in pain, being unable to plan anything, being unable to (insert your own descriptions and/or expletive here making sure they’re a satisfying mouthful).
I feel like I have fallen off the edge of the world (last pithy phrase I promise) and am waiting to rejoin it again at some future point. When I return, and I say when because I will, I have no idea what it will look like but boy oh boy, it’s gotta to be better than this!
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 twisted and turned in the air and held the heavily painted cars were narrow; the steel was shining, glistening in the sun. It was all very romantic, there were lots of attractions and people appeared to be at a premium, those that were there were busy moving from one ride to another, the music was playing and could just be heard.
What caught my attention were people suddenly standing still looking up towards the roller coaster ride. I could see a car stuck on the rails, the passengers were calling out to those below as they wanted to get off, the ride was no longer fun it was scary and unsafe. The small cars began banging into each other as the one in front was unable to move freely around the rails. Some passengers attempted to climb out and get off but being suspended high in the air this wasn’t necessarily a good decision to make in this crisis. The owner of the ride quickly turned the power off and proceeded to get a large ladder and get folk off the ride. Some months later the ride was removed from the amusement park never to be seen again.
Although I am an addiction therapist, counsellor and care giver I often want to get off my spouse’s ride when it isn’t particularly enjoyable, appears unsafe and damaging to my wellbeing. I am after all a social being, I am made for interaction with others within my world, it is only right therefore to expect stimulating and interesting conversation from those in my world and have my needs taken seriously. With my counsellors head on I will ask myself a number of important questions “Do you think you are designed to be managed by your spouse’s emotional states?” “Do you think you may be living a second hand life?”, “Do you think you are receiving emotional hand me downs!” “Do you think you are on an emotional roller coaster ride?”
Being able to able to answer these questions honestly requires me to accept that all this is at times true and my choice. There are times when I am aware that I am taking this emotional roller coaster journey but I don’t necessarily want to jump out of the car, it could prove very painful, rather I want others to understand my needs whilst taking this ride and that they are often different but just as important.
While the person with scleroderma may have the disease to refer to the carer does not. Taking a decision to stay on the ride, although painful and unknown, is done so purely alone on what controls my emotional centre – my heart. Like you it’s a matter of the heart. I am told I have at least 10,000 feelings a day, many of them unknown some more so than others, they control my behaviour, they trigger in me a desire to share and give, and hold back and seek solace, to survive the everyday emotional challenges and have fun when the sun shines. My heart and head working together helps me to choose the ride I take.
It will have its many twist and turns and at times I might be calling for the ladder! However I can be sure of this the journey will reach its conclusion, I shall talk about the ride and share this experience with others. Recently I met with five guys who are also ‘taking their ride’ and one of them commented “I wish I knew how to understand what mood my partner will be in next, I don’t whether its hormones, medical or me!” We had a good laugh at this because we all understood this experience. I kind of think go for all three and you are sure to be okay!
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 disabled is the necessity to have other people help you physically. It don’t matter how determined you are, if your body can’t, you can’t make it by sheer force of will. Having people prepared to help you out when you need it is worth its weight in gold but this vulnerability is galling when you are on the receiving end of the opposite behaviour.
On this awhile ago trip we were unable to park in a disabled space as they were all full, you know those spaces nearest the shop entrance clearly marked out with the attractive wheelchair logos that are usually filled with perfectly able bodied drivers loitering while they wait to pick up perfectly able bodied companion.
Anyway we parked in an ordinary space far away from the entrance and as Michael pushed me the distance to the entrance I noticed that a disabled space had become free. I suggested that we move the car into that space thinking if we legitimately occupied a disabled one it freed up a regular one for someone else. My husband left me in the empty, disabled space while he went to get the car and blow me if a car didn't try to pull into the space while I was sat in it. Picture it, disabled woman sat in wheelchair, sat in disabled space and car occupied by 3 healthy males tries to pull into it and park. Well of course they did it was the one displaying the attractive wheelchair logo nearest the shop entrance. The penny eventually dropped that I was unable to go anywhere so they drove off. I was irritated afterwards for ages, would they have liked the disability as well as the space? Methinks not.
Before I became disabled I would never park (well allow the driver to as I don’t drive) in a disabled space. I was too embarrassed to just be in the car, too conscious that someone could need the space and be denied it for what, laziness, convenience, selfishness, total lack of thought for A N Other? Take your pick because it’s still beyond me even after 5 years of disability.
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!
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 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?
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!
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.