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DAGMAR SLAVEN latest

I posted this on the TMA IBM section and wanted to share it here:Huge changes from one day to the next!
Posted by DAGMAR SLAVEN on April 2, 2014 at 9:57am in IBM DiscussionView Discussions
I do not find it easy to post about this but I do owe it to everyone here.

During the past year I kept on doing what was still possible but knowing that with each time I was transferring to and from wheel chair to toilet, stairlift or bed, my maneuvers were extremely dangerous for me and I did risk the chance of taking a fall and break something. I was very much aware that any mishap and losing the function of only one of my limbs would render me instantly totally dependent for everything.
I chose to block it out and continued on as I was until last Tuesday, when due to the ongoing and relentless muscle loss I was no longer able to get up from the toilet. I had to call my husband from my cell phone (he had gone out for a bit but was in the neighbourhood and was home within 10 minutes) With the help of a gaitbelt that I had bought some time ago he was able to hoist me back up and into my wheel chair.

From this moment on I could no longer depend on any of the maneuvers I had used for a long time, stubbornly, to do what I still wanted and could do albeit dangerously. Now my weakened body finally will no longer cooperate and simply said it had had enough!

Needless to say I am devastated by this latest loss, but have to remember I have been fighting this uninvited and unwelcome guest who has stayed with me for the last 25 years and I have been trying very hard not to let this guest rob me of my soul.

This crisis meant VNA services, establishing the need for a hospital bed, a lift device and a rolling shower commode chair. None of this can happen over night and we are in limbo state as to how soon it may happen. It will also require our looking for a PCA (personal care attendant) to give Bill a break, who to make things worse, has had knee problems and on that fateful day just had had a cortisone shot.

To be prepared for that fateful day I have had an Easy Pivot Lift from the MDA loan closet plus a commode that have graced our living room with their presence since last year, so in a way I was not totally ubprepared for this day finally to catch up with me and my body. I am so very grateful to have been at least proactive in that respect but my stubborn nature wanted to eke out more time and I eked out a little more than a year from our bathroom renovation last January to this year’s March.

My present problem is the use of the lifter which is rather outdated (came with a VHS tape for instruction) cannot be adjusted to my body dimensions and leaves me with bruises on my chest and arms. However I am grateful that I had it available in our home instantly. The other problem is our 2 story home which will require the need for us to have a second set of devices for both levels, since the roll in shower is upstairs. Having to use diapers full time now, there is no place downstairs to clean me up if I soil myself. Bill is my angel and rock but it hurts him and our children terribly to see me in this state. We do pray a lot and try to take one day at a time. I certainly would appreciate your support and prayers for me and my family. I AM devastated but do also count my blessings for everything in my life that has been available to me to help myself over these years of losses, grief and yes, acceptance of IBM, it is what it is, but I refuse to let it rob my soul.

Your sad and overwhelmed friend Dagmar

www.myomusings.com

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Posted by on April 4, 2014 in Disability, IBM, myositis

 

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New Compound designated a breakthrough therapy by the FDA. It releases the brakes from muscle growth

A new antibody could dramatically boost strength and muscle mass in patients with cancer, chronic obstructive pulmonary disease COPD, sporadic inclusion body myositis, and in elderly patients with sarcopenia according to research published ahead of print in the journal Molecular and Cellular Biology.“Age-related loss of muscle mass is a major contributing factor to falls, broken bones, and the loss of mobility,” says co-corresponding author David Glass of Novartis, Cambridge, MA, one of the compound’s developers, along with first author Estelle Trifilieff, also of Novartis. “This study illustrates that we may have a powerful tool to prevent muscle wasting and promote growth.”

via New Compound designated a breakthrough therapy by the FDA. It releases the brakes from muscle growth.

via New Compound designated a breakthrough therapy by the FDA. It releases the brakes from muscle growth.

 
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Posted by on December 24, 2013 in health, IBM

 

My message to all my family and friends

Last night I choked on some food and eventually cleared my air ways after a couple of hours of coughing and spluttering. While I was struggling to breathe and my heart was pounding from a mild panic attack I realized that with this disease I could be called home at any time. Although I am fully prepared for that to happen I realised that I would not always have the opportunity to say what I would like to say to each and every one of my friends and family. I then spent the night lying awake feeling sorry for myself and I couldn’t wait to get to my computer this morning.

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I started my day reading my favourite piece of scripture Psa 23 verses 4 and 5 and while meditating on these verses I received an email from a friend with another favorite prayer/poem of mine which so fitted my mood and encapsulated exactly how I was feeling. I want to share this heart rending poem with all my family and friends that I love dearly.  File it somewhere and when someone you know is called home, read it and know that they will be in your heart forever.

 

IF TOMORROW STARTS WITHOUT ME

 

If tomorrow starts without me,

And I’m not there to see,

If the sun should rise and find your eyes

All filled with tears for me;

 

I wish so much you wouldn’t cry

The way you did today,

While thinking of the many things,

We didn’t get to say.

 

I know how much you love me,

As much as I love you,

And each time that you think of me,

I know you’ll miss me too;

 

But when tomorrow starts without me,

Please try to understand,

That an angel came and called my name,

And took me by the hand,

 

And said my place was ready,

In heaven far above,

And that I’d have to leave behind

All those I dearly love.

 

But as I turned to walk away,

A tear fell from my eye,

For all my life, I’d always thought,

I didn’t want to die.

 

I had so much to live for,

So much left yet to do,

It seemed almost impossible,

That I was leaving you.

 

I thought of all the yesterdays,

The good ones and the bad,

I thought of all that we shared,

And all the fun we had.

 

If I could relive yesterday,

Just even for a while,

I’d say good-bye and kiss you

And maybe see you smile.

 

But then I fully realized,

That this could never be,

For emptiness and memories,

Would take the place of me.

 

And when I thought of worldly things,

I might miss some tomorrow,

I thought of you, and when I did,

My heart was filled with sorrow.

 

But when I walked through heaven’s gates,

I felt so much at home.

When God looked down and smiled at me,

From His great golden throne,

 

He said, “This is eternity,

And all I’ve promised you.”

Today your life on earth is past,

But here life starts anew.

 

I promise no tomorrow,

But today will always last,

And since each day is the same way,

There’s no longing for the past.

 

So when tomorrow starts without me,

Don’t think we’re far apart,

For every time you think of me,

I’m right here, in your heart

 

 

 
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Posted by on December 10, 2013 in IBM

 

Medical Mysteries: The woman in the chair

“I had just come back from Israel,” she tells me. “Oh, it was a very exciting trip! But,” she said, “I do remember being tired a lot. The hardest part was getting into and out of the bus.”That’s when things started, she said. “I had a rash on my legs. I went to see my doctor.”“What did they do for you?” I ask her.“It just went away.”

via Medical Mysteries: The woman in the chair – Health & wellness – The Boston Globe.

 
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Posted by on November 29, 2013 in Disability, health, IBM

 

Steph Hicks tells her story

September 21st is Myositis Awareness Day.

To do my bit towards raising awareness, I am posting a series of mini blogs over the next few days to give a bit of insight into what it means to live with myositis. I’m not moaning or complaining, or even looking for sympathy. I’m just explaining what the disease is and what impact it has on my life. There are many others whose struggles are much harder than mine, but I can only say how it is for me. What I’m describing is a normal day. Some are better, some are worse.

7.15am Wake up facing middle of bed, head has slipped off pillows during the night. Need to turn to other side to switch off alarm. Can’t move. Spend several minutes shuffling hips so that I’m on my back. Now need to lift head onto pillow to complete the turn. Heads are heavy, it’s not happening. Starting to panic. Laying on good arm so can’t push pillow out of bed. Finally summon up strength to roll head onto pillow, then the roll onto left side is relatively easy but we’re not finished yet. Push legs out of bed for leverage and push into sitting position on edge of bed. Alarm now shrieking so turn it off. Need the loo, try to stand up but so exhausted from turning over legs won’t do it. Pile pillows up properly, put head on pillows. Swing one leg into bed – easy. Other leg? Dead weight, takes ages. I’m freezing cold and still need the loo. Happy Tuesday everyone.

Another day waking up feeling drained, like I’ve done a 10 mile run in my sleep. After the trauma of getting my aching body moving (described yesterday) I manage to get out of bed and head to the bathroom. You have to time it just right, myositis muscles can be a bit unpredictable. Too soon and nothing will happen, too late and – well never mind. Anyway, having progressed through all the toilet seat risers, even the highest one is no good to me now. Occupational therapist recommended a powered toilet riser at the beginning of this year but social services are still haggling with the council over who’s going to pay for it. So I have to manage without sitting down. Great fun with a broken leg! Then into the shower, wash my hair one handed, hanging on with the other so as not to fall. Towels are heavy, so hard to get dry. Leave hair to drip until sitting safely on the bed again and can towel dry. Hair drier is also incredibly heavy, the whole procedure is exhausting and I’ve still got to get dressed. That’s the next story…

So, what to wear today? Can’t manage zips or buttons so we’re looking at elasticated waistbands – not too elasticated or weak hands can’t pull them over fat hips. Difficult to avoid looking like my Aunt Ethel, but Pineapple make lovely dance trousers that don’t look too bad and go on easily so that’s what I live in. Leggings are an option if I’m feeling particularly adventurous, but jogging bottoms make me look even more like Waynetta Slob than usual. It’s too much effort to raise arms above shoulder level so t shirts, jumpers etc have to be big and baggy or at least have lots of stretch. Shoes can only be flat (but not too flat) no laces or buckles, and very light weight or they feel like lead weights on my feet. Coats, on rare going-out days, are definitely a 2-man job. Anyway, after a lot of puffing and a few bad words I’m dressed and ready for a nap. Even the simplest tasks are completely exhausting and once you’ve used up your energy for the day you don’t get any more. You have to weigh up everything you need to do in the day and ration your activity so that you don’t burn out – do a bit, have a rest, do a bit more. Nothing can be done on the spur of the moment – it’s a bit like stretching your bank balance to the end of the month, only you’re stretching your energy until the next sleep. And every day is the same. We don’t get days off from this disease. I wish we did.

At last – showered, dressed and ready for the day. I gather up some washing and put it in a canvas shoulder bag to carry down stairs. Collect up phone, iPad, coffee cup and sit on stairlift. Oops, forgotten panic alarm pendant. Put everything down, heave self off stairlift and fetch pendant. Back to stairlift and load up again. Downstairs, take washing to kitchen and load washing machine, drop 2 socks and a pair of pants on the floor. Fetch picky-up thing from by front door to retrieve items from floor, spend 10 minutes squeezing Bold 2in1 out of stupid bottle. Half fill kettle (full kettle too heavy to lift) and feed cat and dog. Cat is easy, she has her food on a work surface so dog can’t steal it. Put dog’s breakfast in her dish, put dish in long-handled dustpan and lower to the floor. Clever eh? Make coffee and carry to my electric riser chair in front room. Go to porch to check for post. 3 letters on the mat. Fetch picky-up thing from by washing machine and poke letters around the porch until it becomes apparent that they will have to stay where they are until Colin gets home. Back to kitchen, get bowl of granola for breakfast and take to my chair. Check laptop, phone, iPad, work paraphernalia and crutches all to hand before sitting down. Still working from home while broken leg mends, so that’s me settled for the morning. I’ll work till lunchtime, then this afternoon I’m going on an adventure 🙂

My afternoon adventure was a trip to the John Radcliffe hospital to see my consultant. The only thing I really wanted to talk to him about was the new drug trial that we’ve heard so much about, and it looks as if it really is going to happen. The big noises are meeting at the end of next week to sort out the details, they don’t know yet what the criteria will be or how many centres will be involved, and they don’t know exactly when it will start. They seemed confident though that it will go ahead, and that’s great news for all IBMers, even if we don’t all get on the trial. At least something is happening after all these years of nothing, and if the drug is proved to work we’ll all get it in the end.

An adventure in the afternoon isn’t really a good thing. Myositis makes you horribly tired, and by mid afternoon I can hardly keep my eyes open. So an afternoon nap is part of the daily routine and if I time it right I can wake up with enough energy to get through the evening. As long as I don’t try to do anything strenuous of course, like cook dinner or eat it or, heaven forbid, GO OUT!! Anyway, no nap today so when we get back from the hospital I potter about doing a few chores, staggering and dropping things until Colin gets cross and orders me to sit down. How did I become this person? My real self is always busy, loves line dancing, walks the dog, bakes bread, cleans the house, runs upstairs, goes to the gym (admittedly mostly to sit in the jacuzzi), visits friends, goes shopping…… Where did I go? Well, I like to think I’m still here, buried under a layer of myositis that I will escape from one day, like a snake shedding its old skin. The new drug trials are a glimmer of light at the end of a very long tunnel but there’s not going to be a miracle cure, not yet, just a chance that the disease process might slow down, might stop, might even be reversed a bit. You have to have hope, or you’ve got nothing. So I head off to bed on my stairlift, the dog races ahead to stake her claim on half the bed (the middle half). It’s best not to disturb her once she’s settled, or you get a hind paw jabbed in your ticklish spot just as you’re falling asleep. In the morning it will all start again, just the same as today feeling exhausted, achey and weak but with the added bonus of sore muscles from today’s adventure. And if you see me tomorrow you’ll think how well I look, and you might even ask me if I’m feeling better. And I might smile and say thank you, I’m fine. Or I might poke you in the eye, you can’t rely on my good nature to that extent.

 
2 Comments

Posted by on September 25, 2013 in health, IBM, myositis, Reblog

 

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Invitation to submit information for posting or become an author on this blog

invitation

To post on this blog or become an author 

LIVING with MYOSITIS

I   would like to invite anyone who has a story relating to myositis or disability to submit their their story or post for publication on this site or if you would like to contribute regularly I will “appoint” you as author and you will be able to post at your leisure.

WRITTEN BY

Patients, Carers and Family that have been affected by this horrible disease.

Please feel free to submit articles for publication or become a regular contributor to this interactive site.

Let me know in the comments section below or email me cluroly@gmail.com

 
8 Comments

Posted by on September 20, 2013 in Disability, IBM

 

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Posting for Myositis Awareness Day

A vivid description of a day with Myositis

Posting for Myositis Awareness Day

So, what to wear today? Cant manage zips or buttons so were looking at elasticated waistbands – not too elasticated or weak hands cant pull them over fat hips. Difficult to avoid looking like my Aunt Ethel, but Pineapple make lovely dance trousers that dont look too bad and go on easily so thats what I live in. Leggings are an option if Im feeling particularly adventurous, but jogging bottoms make me look even more like Waynetta Slob than usual. Its too much effort to raise arms above shoulder level so t shirts, jumpers etc have to be big and baggy or at least have lots of stretch. Shoes can only be flat but not too flat no laces or buckles, and very light weight or they feel like lead weights on my feet. Coats, on rare going-out days, are definitely a 2-man job. Anyway, after a lot of puffing and a few bad words Im dressed and ready for a nap. Even the simplest tasks are completely exhausting and once youve used up your energy for the day you dont get any more. You have to weigh up everything you need to do in the day and ration your activity so that you dont burn out – do a bit, have a rest, do a bit more. Nothing can be done on the spur of the moment – its a bit like stretching your bank balance to the end of the month, only youre stretching your energy until the next sleep. And every day is the same. We dont get days off from this disease. I wish we did.

via Facebook.

via Facebook.

 
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Posted by on September 19, 2013 in Disability, health, IBM, Reblog

 

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