...a speeding car screeches to a sudden and abrupt halt at the side of a road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spin, such is the hurry of its departure and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence. Nope, long gone, all gone, they’ve moved on…
Scleroderma shoved me out of the life I was living, dumped me curbside and sped off, unfortunately taking many of my relationships with it. Having dismantled the body it grudgingly inhabits with me, having totally invaded and subdued this host, it had my relationships in its sight. Target acquired, missile fired, relationship expired.
It has not succeeded with all of my relationships, mind you, it’s just that the ones it has are rather telling. Akin to the monster in a black and white film, "IT" picks off those vulnerable, on the peripheral, yet “IT” refuses to adhere to the norms we’ve come to expect from that genre. That only those on the peripheral become prey, the main character and entourage remain untouched. With at least 30 minutes dedicated to introducing the minor and major characters, the audience is reassured that only those marked with terrible personal problems or a devastating family secret will fly out of the fuselage or be eaten alive because even when the end is nigh, cinematically speaking, someone survives. How else is the tale told? The hero(ine) is always left standing.
Scleroderma follows no such guidelines, makes no such agreement with its host. Alas, it can't read and is not a big movie goer.
I was recently told by a close relative that they avoided socialising with me. I had already realised this and guessed the "why". Mind you there's a difference between knowing in a small corner of your mind and knowing as an acknowledged fact with the attached feelings. Well, now I know and I feel that knowing.
I have been left behind, ditched, abandoned and the like because I am unreliable, no longer fun. I am want to cancel an engagement. Having arranged to go out, I then fail to do so when the specified day rolls around. Or, should I actually partake of the occasion, I fade halfway through, by the time I arrive at said destination, get into the joint, sit, order and stare down the first plateful, I have flopped, fizzled out, faded away, succumbed to the familiar, tired and wanting to go home. All of this makes me a massive spoiler of other people's fun and I know that this is why I rarely, if ever, see certain people.
Of course this puts the blame and responsibility squarely on me even though I have no control over the cause and am just as much “IT’s” victim as those whose fun I spoil, not that anyone acknowledges this. I am hit with a double whammy, when I am unable to go out, I miss out on doing so and when I am well, no one asks me out in case I cancel so I again miss out. It's a wonder I see anyone! Apocalypse now, tomorrow or already, what difference would it make to me?! Okay, now I exaggerate but that's how it feels.
Scleroderma, having started the dismantling process, will at some point finish it but I never expected people to get in on the act in the meantime. When you have a chronic illness, become disabled, have an uncertain life trajectory and expectancy, you don’t expect your family’s response to be one of self preservation by shunning. I am not yet dead but sometimes I wonder if they're pushing me away now so that when I am, they'll already be used to the resulting vacancy. I can only speculate. What I do know is that this ploy won't do the trick. You can't prepare. Death is brutal, selfish, and sudden, even if you know it's coming which of course we all do there’s a difference between knowing in a “vague, one day in the distance” kind of way and “very likely with physical pain and suffering, sooner than it ought to” kind of way.
I am still alive but the life I had pre scleroderma is not, it was butchered, hacked away from me piece by piece. The loss I felt was brutal, sudden and selfish with some relationships withering in the fallout. All I can do now is regroup, like a true remaining survivor of “IT”, not blown out of the fuselage, not eaten alive, take stock, plot course and plod on, wondering where I'm going, if I’ll ever get there and how I’ll know when I do.
There are stages we go through after diagnosis that go something like this:
At least these are what I have experienced, along with an underlying grief that tends to resurface now and then.
In my first blog entry I talked about my diagnosis and my shock. When I was done freaking out, I moved in and out of denial for awhile. I figured as long as my symptoms weren't bothering me too much then I could just pretend that scleroderma didn't exist in me.
And while I was busy in denial, mowing the lawn, weeding the garden, babysitting 5 kids in addition to my own, and generally knocking myself out with housework, laundry, grocery shopping, cooking, and being chauffeur to play dates, sports practices and games, I realized that if I was going to try to keep up at that pace, then I was going to have to ask for help.
Since I was (and still am) not good at asking for help, I had to let some things go, beginning with my yard. It saddens me since I have always loved gardening and enjoy the feeling of a hard day's work and seeing the before and after. I take pride in my home's landscape. Now I had to watch the weeds grow, let my dream projects go and try to not let it bother me.
I have not given up on my gardening. I just do what I can, when I can, and try not to stress about what's always left to do. A garden is never reallly "done" anyway. But here is where that grief comes in. I will always long for the days when my body allowed me to do pretty much whatever I wanted. And I still grieve for the loss of what once was.
I still have a tendency towards denial, or "functional denial" as I like to call it. Sort of a healthy denial if you will, in which I do acknowledge scleroderma; I've taken my doctor's advice on treatment; I have made adjustments in my life to accommodate my limited abilities and I continue to go about my business of living life to its fullest without even thinking about scleroderma for the most part. So, I suppose you could call it acceptance.
Making adjustments was and is hard. Really hard! When you've always been one to do it yourself as well as for others, it's just not in your vocabulary to ask for help. I still have a hard time asking for help and won't unless it's absolutely necessary.
Making adjustments has been a real learning experience. I have had to learn to look at a scrappy yardscape and not care (too much). I have had to learn to be able to relax in a messy house. I have had to learn to not feel guilty for feeding my kids instant oatmeal for dinner two nights in a row and for having to dig dirty socks out of the hamper for them to wear because I just couldn't get around to doing the laundry. (Incidentally I solved this problem by buying more socks. Lots and lots of socks!)
Replacing the word "lazy" with the word "pacing" was helpful. If I was a healthy person, you could call me lazy. Since I have scleroderma, I am pacing myself. Most days I can get up and clean the house for 20 minutes then I need to take a break for 20 minutes. And that's okay. Things take longer to get done and I don't get near as much done as I would like to, or as I used to, but it's just one of those adjustments I've had to make and I accept it gladly in exchange for being able to do it at all.
I also learned that accepting help was almost as hard as asking for help. It does take a bit of pride swallowing and with my esophageal problems.....well you know.
After learning more and more about scleroderma and its tag along friends like Raynaud's, interstitial lung disease, the GI business and more, I decided I was going to take a proactive approach to my treatment and care.
I noticed some loss of range of motion in my hands. I dread losing any function in my hands. So I went to hand therapy as a preventive measure. I learned a lot of great stretching exercises and bought myself a parafin wax bath as well as a small hand massager that helps to keep my joints flexible. I use it on my tight face too and it helps a lot.
Since getting any kind of outdoor exercise in the cold months is aggravating to my Raynaud's, I bought myself a treadmill with the gift money from my dear ol' dad. Now just finding the discipline to get on it regularly is another story. But hey, it was a proactive move!
I also finally started making multi-vitamins, probiotics and glucosamine a regular part of my "pharmaceutical food group" as a fellow sclerodermian in my town refers to her handfulls of daily pills.
Massage is also something I would like to make a regular part of my care but it ain't cheap! Our town has a school of massage and offers student massages 3-4 times/year at a great rate, so I try to hit those.
It feels good taking charge of my body and my care and treatment. I feel empowered and determined to not let scleroderma rule me but for me to rule scleroderma.
I have two very active young boys who need me and too much life left to live to let sclero get the best of me.
Next: Gratitude, Acceptance and Peace
The last two years have been, quite frankly, terrible. 730 days of sleep, eat, repeat.
To recap for you, I was diagnosed with diffuse systemic scleroderma in 2007, heart involvement nearly "took me outta the game" in 2010 (I reckon my foot ulcers begin around then) and I had 3 episodes of cellulitis within a 5 month period, consequently landing in hospital twice, the last time suffering an acute kidney injury and a bout of colitis. Needless to say this isn't a complete list, rather, a summary of the salient points, the magic moments memories are made of.
I know that whether scleroderma actually had flares is disputed by some doctors although there's no doubt that the disease can wax and wane. What the difference is supposed to be I don't know but for my purposes the worsening of my symptoms from 2013 to 2015 will be known henceforth as a flare.
Initially said flare caused tight skin that had slightly softened to tightened again and I now know this to be a red flag announcing the arrival of a flare. My foot ulcers had started before the flare but interestingly they did not heal until it ended. They were literally open for years despite help from everyone including being assessed for skin grafts which were declined. Timing turned out to be the key in their healing, a new dressing introduced at the tail end of the flare did the trick.
During the flare, pain was worse which meant that I had to use a wheelchair constantly, no longer able to shuffle around indoors on a good day, I became wheelchair dependant. I even had to have a stairlift fitted, but then at 46 years of age I was just too old to crawl up the stairs on my knees and take the descent courtesy of my derriere. However necessary the stairlift was, I bristled at tv commercials advertising the device, never seeing anyone tackle the stairs using my crawling/bumping bum technique, only someone in their seventies standing at the foot of the stairs gazing up longingly, shot almost in black and white to emphasise longing and loss. Then, technicolour bright, wearing wooly, patterned jumper, with facile smile revealing mighty white dentures (real teeth are NOT that white), they motored their way upwards. Give me a break!
Fatigue became so bad that of the last two years I spent most of the 730 days in bed asleep. During a four month period I went out of the house socially once. Once! For a time, Ma took over the few domestic chores I did but a cleaner became a better and permanent solution. As well as earning a living, Michael did all shopping and cooking whilst I did absolutely nothing. Even my commitment to the ISN community was reduced to the bare minimum.
Day after day and nothing improved. No change. Sleep, eat, repeat. So long elapsed between washing that I had to diarise it to remember when it happened and so as to know when to do it next. I felt helpless, pointless, living an aimless life that would never have direction again. Many times Michael reminded me that what I felt wasn't necessarily reality. More than once we had the "quality vs quantity" debate, coming down on the side of quality. Every time. Problem was, I felt like I didn't have any!
I felt the terrible pressure of lying in bed while my husband went to work, came home and worked, shopped, cooked and ran the home. He never complained and never added to my burden of guilt. I felt my life had become meaningless, my contribution negligible. I wondered if my illness would ever improve, concluding it would not I assumed that this was it, the end and I wasn't even that bothered.
Strange as it might sound it wasn't all doom and gloom though, it couldn't be, given what my husband and I are like as individuals, together and most importantly, with our faith. I would also like to give credit to the others who helped but alas there aren't any, apart that is, from the scleroderma community. Whether virtually, via these forums and blogs, or through my overall involvement with the ISN, I still had a purpose, however small and I still belonged to a group of people who understood. Even though my reliability was non existent, even though Shelley Ensz and Jo Frowde carried the lionshare of what the three of us do, they never acted in anyway to make me feel insignificant. I did what I could, "hooray!" and what I couldn't do "tomorrow will be better..." Never criticism, never disassociation. At home, Michael and I still met with our scleroderma support group although some meetings were cancelled. Again never criticism or disassociation. I wonder why family is always the exception, why always the pair of concrete slippers making sure you never surface? A close relative actually admitted that they ditched me because being ill made me unreliable and on the occasion I actually made it out, I was"zombie" like. I'll talk about this in more detail in another blog, or maybe on the psychiatrist's couch!
To conclude, the flare is now over and not a moment too soon. I had started to consider it in terms of, the end, my end, game over and I'm not even a glass half empty kinda gal. I am now able to share the demise of two terrible years, here, at the beginning of a new one. Okay, technically, we're nearly halfway through the year but I reckon I wanted to wait awhile and make sure, before putting my head above the parapet and calling time on two terrible years, 730 days of sleep, eat repeat!
Did you know, I spent my early years wanting doctors, consultants, nurses etc to like me? Even though I was grappling with scleroderma and the havoc it was wreaking I wanted to be liked by all these new people I was spending time with, especially if I was hospitalised. Guess what, this was a totally normal and common expectation but it was completely unnecessary, even counter productive.
Let me be clear, I am not suggesting that we be rude or obnoxious in any way, that's totally self defeating, just that we recognise that interaction with our medical team is not a social encounter for either side. As nice as it is to feel all warm and fuzzy about those providing our care it's not a priority, yes, we need to be able to connect with the person but only so far as it enables us to communicate freely with them. If we're behaving reasonably, their feelings are not our concern and provided the level of care is what it should be, neither is whether they like us or not.
On the whole I have had excellent care at the hands of professionals well able to manage egos and personalities, including their own but law of averages says someone, somewhere didn't like me but apart from anyone involved in a complaint, I am oblivious as to who this would be, just as I should be. Whether seeking diagnosis or living it out, every now and then you're going to encounter someone who is either not on the ball, has a bad attitude or that you just disagree with and in this situation their feelings are not your priority, you are.
Diagnosis is usually the first time the word scleroderma is ever heard and being the word never before heard it brings no immediate meaning.
Then symptoms come as a flood of words never before heard, words big, words baffling. Associated diseases, a veritable feast of words never before heard, follow.
Questions never before asked take form in the wake of the words never before heard.
What will happen to my body?
Will it hurt?
What will I look like?
Will I die?
The failure of a quick death following exposure to the word never before heard naturally shifts the focus of the questions never before asked.
Will I become disabled?
Will my pain be controlled?
Will I be able to work?
Will I be able to pay bills?
We have the words, we have the questions but we have no definitive answers only a jumble of opinions, facts and emotionalism from which to fashion a way forward.
Then unexpected, new friendship, a gift that can compensate for much loss. Friendship with some never met, others now familiar, with searing honesty journeys are shared, benefits reaped, the virtual hug employed for those separated by distance.
Having all met with the word never before heard, having all asked the questions never before asked, with a determination never before known, we strive to succeed, to survive.
Wow! Been awhile....
What's new with me? A teenage driver (and all the angst associated with it) A new (used) car (and all the angst associated with that). Dating (and you guessed it - more angst)
All angst aside, I have missed this place! I hope everyone is doing as well as can be expected. I am status quo for me :)
Need to do some reading and catching up and then will get back to you all with my usual wit and humor ;)
Spoons to all!
This blog has been inspired by KathyD and ShelleyE, in particular their respective comments about "changing expectations in line with ability" or "to simplify", I refer to it as "adjusting your horizons". What are we all talking about? Whether adjusting, changing or simplifying it's all the same thing, coming to terms with our illness so we can live successfully with it.
This is always a hot topic on our forums because it's something we all have to do.That we live with scleroderma is not a choice, how we live with it is and remember it's not just ourselves but also those around us. When our lives were transformed by the life coach from Hades, it also reached its cold, clammy tentacles out to our beloved.
Now we may be think it impossible to live well when we're in pain, fatigued, debilitated, lost mobility, independence, perhaps a loss of material circumstances but based on my own experience and that of many others it is actually possible.
I have said a number of times before that life looks nothing like we thought it would but that's not necessarily a bad thing and this realisation is a good place to start from. If we are not prepared to let go of the hankering after our previously lives, to let go of grieving their loss, we're never going to get off the starting blocks. Now here's the thing, grief has to be respected, even when we move on there will still be times of reflection and unless we grieve we'll only achieve a false start. We have to hanker...we have to grieve...we have to move on!
Whether we "change expectations in line with ability" or "simplify" or "adjust horizons" we find our own way of living with scleroderma. Judging from the people I have met and the people I have encountered on the forums, we are managing to forge lives of quality, filled with much love and keen humour, still acutely honest about our predicament but determined to enjoy. Living our lives like this actually benefits us and of course those around us who, by association, have also been affected by scleroderma.
Those of us in the UK receiving benefits will be feeling the government's hot breath on the back of our necks as they review us, one by one, in an effort to get as many of us off of benefit as possible, that's purely an opinion. The ill health benefits criteria has changed so the government has decided that everyone in receipt of these benefits must be reassessed. Never mind that our circumstances might not have changed! Never let the truth get in the way of a benefit review!
When first diagnosed with diffuse cutaneous systemic sclerosis I felt like one of "THEM!", a creature from a 1950's black and white sci fi but as I found other people with scleroderma I felt less isolated, less freakish and more human again. The review process has made me feel like a hunted species with no dignity but a price on my head. Okay, clearly I have a flare for the dramatic but as I prepared to complete the 20 page form from the Department of Work and Pensions, hunted, well maybe just hounded, is how I felt.
Said form asked many useful questions but also some bizarre ones, well bizarre to me as I could not see how they assessed my ability to work, or lack of. Questions like "can you pick up a £1 coin, can you pick up a cardboard box?" Who cares? How can this possibly be a relevant question for assessing how disabled I am and what my capabilities are? Better to ask for letters from specialists who are able to assess what my capabilities are. As it happens they've been seriously limited for a long while which is why my former employer determined back in 2008, that I could no longer work, would never be able to again, and in recognition of that awarded my occupational pension to me at the age of 40.
I am very thankful to a lovely friend, who used to complete these forms for a living and helped me complete said form. This lovely friend did so at the drop of a hat as I had left said form sat on the side for weeks. Even though the completion deadline loomed, even though I know I can't work, I froze at the thought of actually filling out said form. Ironically people working the system have no such qualms, after all, they can always get a job should they be declined.
Here's the thing that really bugs me about this whole process, back in 2007 I was busy being busy at my career, I would grab a tall latte from my favourite coffee shop, wander in to work, sit at my desk and enjoy the whole day. I actually looked forward to going to work and did not expect it to end so abruptly and horribly. Even as I became ill, even as colleagues began commenting on my obvious symptoms I kept working. I only went off sick because my manager sent me home after I admitted that working was making my symptoms worse. I didn't sweat it as I had an upcoming appointment with a rheumatologist at which I would be diagnosed, prescribed treatment and then return to work in say 3 months or so. I never expected to be told I had a rare, incurable disease from which I would never recover. Yet, in the wake of such a diagnosis my first question was when could I go back to work! Needless to say the answer was ill health retirement and although I rejected this as ludicrous at the time it came to pass some 14 months later.
I would never have abandoned my career if there had been any chance of being able to keep it and being a responsible, motivated, intelligent person I know that I cannot work and if I could work I certainly would work. Who chooses to receive measly benefit rather than a plump salary? Certainly not me! Who chooses to partake in this difficult, stressful review process? Certainly not me!
Hard dry skin that cracks and bleeds
Sausage fingers do impede
Whose hands are these
That so betray me
Stiff and clumsy
Oh how they fray me
And in the cold turn white then blue
Not to mention painful too
Whose hands are these
I don't recognize
Fingers swollen twice their size
I lay them in my lap to rest
Before I put them to another test
Telangiectasia are red
My fingers are blue
This disease feels like
Always having the flu
Sometimes I do well
Other times I do not
It's not just my body
My attitude is shot
So when I am angry
And I don't give a care
I come to this place
For my feelings to share
I know I am safe here
With my scleropeeps
For they understand
This awful disease
I recently got together with a wonderful bunch of fellow sclerodermians, we all had scleroderma but not one of us was the same. As expected scleroderma was the hot topic, in particular types of scleroderma, as in what are they and who has what. Good question as I have grown up in the weird ‘n’ wacky world of scleroderma thinking there are two main types of systemic scleroderma, diffuse and limited, with the CREST acronym no longer in use. To my surprise, my dear friend said that a rheumatologist told her she had both limited and diffuse, I queried this having never heard of it before and not being able to fathom out how you could have both limited, slow in onset, slow in progression and more favourable in outcome and diffuse, rapid in onset, rapid in progression, poor outcome. Was localised included in this blurring of types?
Well having thought about it, now it makes perfect sense! My dear friend could have both and as it happens so could I! I was diagnosed August 2007 with diffuse and my symptoms had started in February 2007, within 6 months I went from working full time to being so debilitated that I struggled to walk. I had skin involvement above the elbows and knees and on my back and abdomen, all fitting the diffuse criteria for sure.
However years prior I was diagnosed with IBS and at one point was thought to have an ulcer, remember that gastrointestinal involvement is a hallmark of limited scleroderma. Having been an avid gym attendee I found exercising a struggle being more fatigued than usual, eventually giving up exercise altogether. A patch of tight, waxy skin appeared on my right shin and grew larger, then appeared on the left shin, being misdiagnosed as necrobiosis lipoidica, it was in fact tight skin from scleroderma.
In 2004 I was diagnosed with interstitial cystitis, my first autoimmune disease and one associated with scleroderma. When I was younger my hands had always been white and cold and I was also always cold. I slept a lot as well making sure the weekend included a nap or two, without which I found it difficult to cope. Looking back I could have had mild Raynaud’s as early as my twenties, limited scleroderma as early as 2003, albeit atypical presentation, with diffuse coming on in 2007. I also have localised scleroderma, morphea, but I am not sure where that fits in.
My dear friend also said there may not be limited or diffuse but just scleroderma and when you see how different we all are, it's like we each have our own disease, this makes sense. It certainly makes it easier to fit in those of us with atypical presentations who do not start with Raynaud’s and tight skin on the fingers or hands.
I guess the issue with the lack of distinction is the difference between treatment of limited and diffuse. Diffuse usually demands close monitoring and aggressive treatment whereas the approach to limited can be more relaxed. If you don’t know what type of scleroderma you are dealing with how can you treat it? If treatment is symptom lead surely that ticks the boxes, except what about preventing the symptoms in the first place? Isn’t that where immunosuppressants come in, dampen down the immune system and hopefully slow down disease progression?
Having had scleroderma now for 6 years I find this all fascinating, the very types of scleroderma could be up for discussion! What diagnosis, I wonder will I be left with?
This is such a complex disease! Think about it, everyone of us here has scleroderma but we all have a different experience of it and unlike other diseases there’s no real disease path or predicted outcome, we’re flying by the seat of our pants in the weird ‘n’ wacky world of scleroderma.
Recently I was admitted to hospital, for 10 days, with cellulitis in my right hand that gave me a very high temperature making the hand red, swollen and very painful, so much so that I instinctively brought the other hand up, like a left hook, to guard it when a doctor tried to examine it.
On my first day I was not to eat in case I went to theatre and secretly I hoped for this, I imagined the pus oozing out of my hand, it resuming normal size and the pain ending. Eventually the doctors burst my bubble, they would not operate fearing my hand would not heal because of the scleroderma. I asked they consider cutting it off instead.
During the early hours of my first night two things happened simultaneously, they were the convergence of two elements making for a perfect storm, overwhelming and wretched. Firstly came Nurse, taking 90 minutes to provide pain relief, available in simple tablet form, which could have been administered in 10 minutes as there were no buzzers ringing, no admissions no nothing. Where Nurse wandered off to only she knows, what I know is that during her absence my pain raged and I toyed madly with the idea of ringing the buzzer again, for the same thing, at such a late hour! Dare I be that belligerent, declare myself a difficult patient on my first night? I looked at the clock every few minutes, straining to hear
footsteps coming my way and found myself ever so politely grateful when they finally did.
Then came my family’s personal favourite, Cannula Cowboy who burst into my cubicle shortly after the episode with Nurse, announcing “Cannulas are not contraindicated in scleroderma”. I suspected he thought himself so good he could get a cannula into the hide of a rhinoceros without breaking a sweat. I just stared at him, blinking for a time and then explained that it was common knowledge people with scleroderma were difficult subjects for cannulation, blood draws, anything involving needles. Oblivious he proceeded to try his luck and jabbed a needle into the crease of my arm, where you would normally find a vein in a person without scleroderma, but all he got for his troubles was a gush of blood all over my bed covers. Undaunted he turned to my hand, afflicted with sclerodactyly and covered in hard skin, asking why it had not been used. What’s the word, incredulity?
You see I had been told the existing cannula was in too small a vein and wasn't letting enough antibiotics in hence trying to find a bigger one. To me, in excruciating pain, more antibiotics meant less infection and quicker relief. He could have cannulated my eyeball for all I cared at that time, I actually shouted out for him to come back and try my hand having initially declined his suggestion. Try it he did, my right leg shot up in the air and we both watched as the needle, although piercing the skin, failed to advance any further. Cannula Cowboy then rode off into the night on the horse with plenty shame knowing that cannulas are, as a point of medical fact, contraindicated in scleroderma.
Shortly after an anaesthetist arrived with an ultra sound machine and the determination to find a vein because it was in my best interest to do so.She initially pierced the skin which is not on any planet or in any language a “sharp scratch” and began moving the needle around to catch a vein. This was painless and fascinating as I could see it all on screen like an old black and white video game, the veins were small holes that bobbed up and down against a background I can only describe as looking like a piece of liver. Very quickly she speared one enabling the antibiotics to literally course through my vein which I hoped would lessen the pain. Pain that was threatening to reduce me to a pile of emotional rubble but that’s another story.
As a poorly patient I was vulnerable and unable to fend off Cannula Cowboy or indeed give him the really good kick in the britches he so richly deserved. Not the type to learn from an experience in which he clearly embarrassed himself, that Teflon ego allowing it all to slip off, nothing but nothing lowers that grandiose self assurance. As for the Nurse, if you lit a fire under her britches the coroner would be declaring identification by dental records before she moved at a pace.
Although difficult and unpleasant I wanted to share my experience of "Nurse and the Cannula” in order to allow them redemptive merit, in literary terms, at least.
Did I ever mention how illiterate I am with computers? It's a surprise to all I imagine, that so much of my time is spent at a Radio Station which actually runs with nothing but computers! I am there at my desk looking all clever and like know what I'm doing -- It's a ruse!
I have spent hours writing stuff, from reports to emails, only to press the wrong button and it all magically disappears - how frustrating. I haven't the will to sit down and begin again. My heart sinks.
My stumpy fingers, clumsy and unwilling to hit the right key, thank goodness for the "Backspace" button. How many times have I attempted to write a word that just keeps coming up with the wrong thing altogether, and that brings me to my phone Oh! the dreaded texting exercise. I have sent many a text that makes no sense what-so-ever.
"Hi Alan I gusse I wsont be in tofay, i hace too muvh to do"......Send!!!
........Ping! with a little mailbox sign
I usually ring him instead it's easier. My texts have been known to crack a smile on the straightest face. I have sent messages that I couldn't possibly post on here for fear of deletion from the site. My daughter despairs. She got me one of those stylus things that you touch the letter with in the hope it solved my dyslexic messages so that people could understand without having to ring me back! It worked for a time but I lost it and now it's back to stumpy fingers and non decipherable messages
I mentioned it in clinic that I am likely to get myself into trouble with my fingers and my somewhat rude or dysfunctional messages - they think I am in the wrong place, "The psychiatric Dept is that way my dear!" And yes I am such a fool, I make fun of myself to make light of a situation, that's me all over.
I joke that my fingers are perfect for making pastry. In fact my pastry though I say it myself is by far my greatest achievement in the kitchen, although I am pretty good at baking!
I used to be top of the class at school, it was almost embarrassing watching my cakes rise like I was inflating them with a bicycle pump. My friends, it's fair to say hated me, my teacher loved me. I was the model student from which she would take the credit and I would stand with a will to die of embarrassment at the final result.
I took to cake decorating too. I went to college and I will always remember the Mothers Day Cake, beautifully decorated like a woven basket with flowers all made of sugar and the foolish trick of putting it on the roof of my car whilst I got in and then forgot about it.
It fell off in the middle of the road about half a mile from the college to rapturous laughter from passers by. My work ruined and a flattened cake to boot. One of my many thousand disasters!
My stumpy fingers ended my love of cake decorating. It does ruin most of my everyday chores in fact. I hate loose change, shoelaces, buttons, threading a needle-impossible! Opening jars, milk cartons, zips, clasps, packaging, and text messages to name but a few.
And there goes my phone - text message. Let's see who I can upset today. My life is never dull?
Contrary to what I know you all think of me, I don't have it all together. Nope, I'm not the calm, cool, collected supermom with all the answers that I appear to be. ;) But make no mistake! I USED to be! (if only in my mind). :rolleyes: That could be why I suffer from the occasional anxiety attack today. Just talked myself out of a full blown, chest crushing, hyperventalating, finger tingling, arm numbing, dizzying panic attack - well with a little help from my doctor's nurse, bless her heart!
The first time I had a full blown anxiety attack was on a hot, stuffy, crowded plane. I managed to talk myself out of that one too. The fear of embarrassment and causing a scene was greater than the fear of what was happening to my body - even though all I wanted to do was rip off all my clothes and jump out the window. :o
The next one came in the middle of a meeting where as secretary, I was taking notes. I had to excuse myself and go home. The worst one was about 2 years ago here at home in the middle of the night. I thought I was having a heart attack and it may have been triggered by an esophageal spasm. I had to call 911 before I passed out. My youngest son is still traumatized by the EMT's taking me away.
Today, I just couldn't stop my mind from racing. I started fretting over - well, everything! The foremost in my mind - getting my son and his friend to their driver's ed class on time (I'd better be careful here or I may relapse). My mind flooded with what-ifs. What if the bridge opens for marine traffic and makes us late? If we're late they will charge us $15. What if there's an accident? What if WE are in an accident? I should not let my son drive...
From there it just went on and on until my stomach was in knots and my chest was so tight I couldn't breathe. I envisioned the medics coming again and I sure did not want that so I called my doctor's office and my nurse helped me to breathe regularly again. She consulted my doctor and he advised me to have someone drive me to the walk-in clinic and get checked out.
I told them I could have my son drive me there when he got home in an hour but after I felt a little better I decided not to go. I really, really do not want to worry him, or my youngest, plus I have to be here to babysit a 7 year old when the elementary bus arrives. I seriously considered asking my dad or my sister to drive my son and his friend to driver's ed but I don't want to put them out. So again, my fear of worrying others or having to put someone out of their way for me, overcomes my anxieties. I know that is wrong. But I cannot help it.
My nurse said turn on the tv for a distraction. Too annoying! Writing to yall here is a good distraction for me.
I made an appointment to see my doctor first thing in the morning to discuss what to do with me. Here comes the high school bus - time to suck it up - again.
*Sigh* I'll be alright - nobody worry about me! I mean it!
You - will - not - be - lieve - it! :blink: The bridge DID open for marine traffic! We were about 20 cars too late to make it across. I - do -not - be - lieve - it! I have not gotten stuck on the bridge in well over a year! Marine traffic is not a regular thing - maybe a couple times a week? And on the very first day of driver's ed class, the very thing I was fretting about, happened and made us late.
Thankfully not too late and as it turns out more than 1/2 the class (9 out of 14 students) all come from our side of the bridge. It's normally only a 1/2 hour drive but if you get stuck for a bridge opening (thus a closing) then you can add at least another 1/2 hour to your travel. The instructor didn't charge anybody for being late. I don't think that's fair anyway.
Well once there, the kids hurried in and I had brought my crossword puzzle book to occupy myself for the next 2 hours but there was a nice break in the rain and the night air felt good so I went for a walk. I had not walked through this olde part of this cute Scandanavian town in more than 15 years. It looks a bit like Santa's North Pole only without the snow. The shops are precious and the bistros and restaurants were warm and inviting as was the famous bakery which had all their wares in the window - taunting me.
It was a nice, peaceful walk, a good distraction. I got back to Betsy just as it started to rain again. I just sat and enjoyed the sound of the rain on the roof of the suburban. Before I knew it, the kids were coming out and we headed home. They have their first drive tomorrow! I can't believe my baby is driving.
Well it's off to bed now. I have an early doctor appt. Going to be pretty embarrassing. I hope he can fix me.
4:18 am - I'M UP!
In browsing some info on anxiety attacks, I found this from helpguide.org:
"A panic attack may be a one-time occurrence, but many people experience repeat episodes. Recurrent panic attacks are often triggered by a specific situation, such as crossing a bridge or speaking in public – especially if that situation has caused a panic attack before. Usually, the panic-inducing situation is one in which you feel endangered and unable to escape."
"Humor is the sword with which I battle this disease" ~ Barbara Lowe
Whether you are battling a chronic illness or just life itself, humor is the sharpest, most effective weapon we have at our disposal. It's free, easy to use, you don't need a permit or any special training and you can't accidentally kill anyone with it (at least I don't think so). And the best part? You can open carry.
So where can we find this thing called humor? Well besides all of the obvious places like Comedy Central, your spam folder and the sheriff's log, it's everywhere. You just have to look. There is a variety of humor to choose from - something for every personality. And there are endless places to find it. Start by looking in your own home. My kids, for example, crack me up. Whether I am laughing with them or at them, there is never a shortage of humor there.
Facebook. I have been facebook free for 29 days, 9 hours and 15 minutes. The thing I miss the most, besides my friends, is the humor. There's nothing like starting your day with a good abdominal workout from the belly laughs. Just be careful about drinking and scrolling or you could end up with the proverbial milk through the nose - in my case coffee - not pleasant.
We all know that laughter is the best medicine. Again, it's free. It's also safe, legal and you don't need a prescription or a green card. The only side effect is that it may be contagious.. The best thing? Overdosing on laughter is a GOOD for you!
It's hard for me to think of any downsides to using humor - unless you happen to run across someone who has never themselves used it before. With these individuals, you can take your best shots, using the most high calibur humor and still, they may remain impervious to it. You can try as you might to get them to take off their armor but if they don't want to, it's best just to move on to another target and hope for a bullseye. It's those bullseyes that make all your efforts worth it.
Woke up this morning - Ouch!! My back was staying put - I wanted to get up! Sciatica struck at 08.15 on Tuesday 29th January.
So my day begun like a Neanderthal, my knuckles almost dragging the floor. I needed to straighten up, least ways to make coffee which I desperately needed, my mouth like the inside of a Rabbit hutch.
Reaching for the jar of coffee with a little Argh! Just lifting the kettle for water did nothing to help my posture.
Cats gathered around my ankles assuming to be fed and I was having trouble making a drink never mind preparing breakfast for the felines.
With drink in hand and stacked up cushions on the sofa a sat in agony until my husband showed up in dressing gown and slippers; yes, it is his day off, of all days.
"Shall we go out today?" he said. Quite unaware that I was hunched and in pain.
"Can we just take it easy" I said "My Back's out"
"Oh Okay, I'll just have a coffee then" Looking at me to provide his cup.
I think at that point he realised that I wasn't moving so with an about turn he went off to make his own.
I am assuming it's Sciatica and not something I have pulled. My self diagnosis saves me a trip to my general practitioner and I'm afraid that's another story!
My Momma used to say, "just wait until you're old"
When your back goes out more than you do and begin to feel the cold
Back then her words were unheeded I was young, why should I care?
I'm too far away from fifties, it was a lifetime till I was there.
I'd go outside in winter, build a snowman, cold hands would warm by the fire
With feet so cold inside my boots and skimpy outdoor attire
"You'll get chilblains" my mum used to cry, and then you'll get what for
But those words meant nothing as I ran out of the door
I'd walk around in Tee shirts when woollens I should have worn
"You'll get pneumonia one day" and then you will mourn
But life in the 80's was fun, why should I take her heed?
A Mum who told me what to do was something I didn't need.
So the years went by as they do and I got married did all that
But something wasn't right you know, I began to eat my hat
My fingers dead and painful, Pneumonia came and went
And off to see the specialist, I was duly sent
They said I had Scleroderma, surely it wasn't bad
I'd never even heard of it. something I never knew I had
My Mother's words rang through and through
And now I was feeling the cold too
Chilblains, illness, I had the lot
And other things that I've forgot
I guess my Mother was always right but I never saw this day
And now I wish she was here, she was right I would say
Snow they say!
Well it's certainly cold enough. The mere mention of the word and everyone buys bread- Why?
I'd wrestled with a wonky wheeled trolley all round the supermarket. I'd bumped. bruised, and bore the brunt of many a screwed up face and said "Sorry" more times than a child with a broken piece of China! I was worn out when I reached Checkout.
In front of me was a lady, you know the type. A busy little bee type who was keeping up with the cashier, throwing things into bags, but the mound of Bread? 10 loaves - I counted.
I looked at my measly shop with just a pack of fresh meat, a bag of peppers. cheese, tinned tomatoes,beans. Yeah! I'm making Chilli.
The lady announced with a rather worrying expression. "It's going to snow really bad, thought I'd better stock up"
I smiled and looked down into my trolley and said "It's terrible when you shop for a month isn't it?" Meaning the stuff I had was for a whole month.
Some people don't get humour.
"You don't eat much then do you?" She said
"I don't eat at all" I said!
She hurried off balancing loaves on top of the bags of shopping.
I said to the cashier. "A few more loaves and she could build an extension"
At least someone had a sense of humour - she laughed out loud.
She went on to tell me that they had been really busy since the weather men announced there would be snow. I had noticed some shelves were unusually bare and the fact I had the wonky wheeled trolley was because it was on it's own in the far corner of the car park, No one else wanted it!
"I hate the cold, do you?" She asked
I think she sort of guessed that due to the heavy layers of clothing I had on, boots, gloves, scarf the whole lot. I actually looked like I had robbed a snowman
On the way home it started and I was very glad to get indoors to my warm fire.
Looking in the fridge, I wondered if we would survive this snow-ma-geddon? If we get snowed in my family will starve. Huh! welcome to my world. They can share my Osmalite!
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 sound blocking headphones and blog up my peeps because that always cheers me up.
My youngest is so very perky and chatty first thing in the morning, not unlike a small terrier scampering around your feet. "Are ya still gonna make strawberry shortcake for breakfast, mom? Are ya? Huh? Are ya still gonna do that? I'm hungry, can I help? Can I? Huh?"
I was up from 3am to 6am browsing the archives of my "Barefut Impressions" hoping that would put me back to sleep. I got a whole hour nap in from 6am - 7am before I was awakened by a cat's wet nose poking me in the face. "Are yew awake mama? Are ya huh? I'm hungry. Are you going to put some food in my dish yet? Are ya? Are ya huh?" Poke poke poke.
OKAY! I'M UP! Food in cat dish - the strawberry shortcake can wait until I am able to move without hobbling and I can remember my name. I warmed up a cup of the really, really bad coffee that I brewed at 3am. Note to self: Don't buy the cheap stuff anymore. No kind or amount of cream or sugar in the world will make it taste any better.
It is chore day. All day. Bathrooms, bedrooms, kitchen and laundry. My kids are going to hate me all day and because of my lack of sleep, I will be especially intolerant of their whining and half hearted "efforts" to get their jobs done. There will be a lot of yelling, from each of us, and a lot of door slamming and cussing from my youngest.
This is starting to sound like that new orange juice commercial where the guy sits down with everyone he will encounter throughout his day and they tell him what he is in for, "At 9 am you will have a flat tire..." And after hearing about all of his challenges for the day he smiles and says, "Good thing I have my orange juice".
I tell ya it's going to take a lot more than orange juice to get me through this day with a smile. I'm having a flashback to a dream I had recently...
"Hey mom! When are you going to make the strawberry shortcake?!"
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, not helping at all.
It started raining tiny razor-like raindrops and the tide started washing over the stacks of photos that were sitting on the rocks. I tried to grab as many as I could and put them up on higher ground. My efforts were futile and everyone abandoned me on the shore because they didn't want to get wet and didn't understand why I cared so much about any of it.
I noticed that the water went from crystal blue to muddy brown. I was angry and frustrated and overwhelmed but I still kept on trying to save whatever photos I could as I yelled at the others trying to convince them that this was important and we had to get it done.
Wowza, well this one is a no-brainer to figure out. If you know me, this is my waking life. Dreams are fun, funny, weird, scary and sometimes dreams are a wake-up call.
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.