MDJunction - People Helping People
 

Why wear a ribbon?

  "My son is going through rehabilitation therapy/Christian ministry for his alcoho..." (trixie60)

MDJunction to me

imsoblue"I was completely bewildered when I received my diagnosis of HH and cirrhosis. For so many years I had been told that what I was feeling was due to "old age", and I am 61 years old. I knew nothing about hemochromatosis or what to expect and even my family doctor did not have a clue. I found MDJ when I started to search on the internet. I have received so much compassion and education here. I am most grateful that I had the support from the cirrhosis group when I had my first episode of HE. I now know what I need to do to try keep this from happening. (lactulose). I feel very close to the people here. My goal is to educate people about HH and to support those affected by it. I read people's posts and I can just sense when people are feeling that absolute bewilderment. Thank you so much for all that all of you do for others." (imsoblue)

MDJunction testimonials
conker

The brain in that MRI is one Pissed Off Poodle!

My reckless luge ride from a butterfly rash and a whiny reputation to the crash against the cold cold ice of CNS Lupus. Managing flares? When your life events fold over each other like peony petals, flares are what I sent up to mark my position.

Starp yourself in. It is a hairy ride.

Cardinal Cushing was So Damn Thin.

Aug 05 2013

"You are looking decidedly Cushingesque."

My immunologist looks like he should be holding a shillelay, he is so Irish, but I knew he didn't think I was either Catholic or an aging prelate returned to life. I have just tapered from 75mg daily of steroid for a vicious scleritis bout, and my normal 7.5 to 10mg a day is what is known here as steroid-sparing. It combines with met...

Throttling back

Dec 07 2012
Woke up to the sounds of my young flatmate working on his car and all my cranky bubbled to the surface. I am spending this morning reminding myself to let go. LEt it go. It means little, that the sinkis a bit full and the schedule running behind; after all, we will get the groceries in, and the big things will get moved, which I can't do alone. Last night I was taken to visit a sick friend and...

Turning the Wheel with an insensate hand.

Dec 07 2012

I am back my dear, and back on the MTX, the dirty old drug that I left with wings on my heels in February after a week in hospital with pneumonia. Those unknowing here is the tale; I have had SLE fora long time, and went onto plaquenil and nsaids in 2005 which was all nice and without a great deal of problem until in 2009 my hands and feet suddenly disappeared and I got diagnosed with Sjogrens...

Without my butterfly.

May 08 2012

I have been up late tonight. Why not I hear you ask? After all, is there any reason she should be tucked up at 9pm, is there an early meeting, an unmissable anything awaiting her? Nopety nope, my dearies, that is not the lupie life really, now is it. 

I got plenty of appointments, in fact tomorrow I have my much awaited Pain Clinic, which is favouring me with a two hour 'introduc...

To the swimmers in the deepest sea, with my gratitude and love.

Apr 10 2012

When did we find that coming up for air was a thing we could forgo? In the thin acid days of the last ten months this talent has beenrevealed to me. You and me, we are the swimmers who went below yet did not drown. 

 How many times did I break the surface, all desparate crashing arms, screaming 'help me, help', before plunging under again? 

I have been away fo...

The ashes....

Apr 07 2012

I just put the sheets in the washer, the second wash for them, left on the line in a bonfire. Burning the first box of my late husband's papers and like magic in my inbox, an email from my sisterin law. Six months has passed, how am I? 

 I am a woman who is just out of hospital, having had the first long hospitlisation for her lupus. It was compounded by the rubbish of unack...

Gimptopia is born

Feb 06 2012

The Gimptopian Manifesto

 

I had Gimptasia and that failed. It was never a sovereign nation, more like an autonomous region, relying for existence on the permission of the nation in which I am embed...

The Helping Heart

Jan 09 2012

It was the Wishing Moon tonight.  I knew this all day and wasthinking of it as my son and his girl pottered and talked and made plans for the night. They also made the plans for me. The what-will-mum-do plans. I wept again today. I have to type 'of course&...

The Weeping Song

Jan 07 2012

My son and I used to have a name for a particular corner, we called it Reeky bend. Another one was weepy hollow because it seemed that every time we went round it the Bad Seeds song "The WeepingSOng" was on the car stereo, which seemed like some coincidence to us! My son and me, well let me just say he is the cause of the weeping at the moment, but it is probably normal, and there may...

Max walks the line....

Jan 01 2012

Max is a dog. I am not sure that he is aware of this. And that would be my fault. The thing about being this lonely is the way it makes you colonise everything you can get your hands on. Sorry, tinydog!

So today Max has gone onto the dog line in the yard, because my yard is not closed in enough and he escapes all the time normally. As much as I like my neighbours and am pretty happy to le...

The normal stuff - is there any such thing anymore!

Dec 28 2011

A dog ate my homework. It is the joke excuse I know. We all know it and I think it is what my life is becoming...bear with me here, I am not finally going off my Lupie rocker! I am that dog and I haveeaten all the homework! LOL. In my house I have realised all sins can be attributed to me. I had not noticed people doing it, or that a lot of anger gets taken out on and directed at me but this ye...

The looking glass - mirror maze

Dec 20 2011

It started then in 2009, and as I think more about it and the tiny things pop up - like today, when I grabbed Max's little pooch present for his chihuahua girlfriend Millie from two doors up thestreet and realised that I had written Minnie on the card - it is then that I can see them as part of that bigger picture that Immunologists describe as developing like the old time polaroids that we...

The Random Hedghog

Dec 19 2011

The Random Hedgehog is a wonderful creation of Mr Edward Monkton and it goes like this... " As soon as I start thinking that I am sensible and sane, the random hedgehog comes along and fiddleswith my brain."

I got a package from London this morning which on the cheer the blazes up path ranks very high indeed. it was from my dear Magdalena, my fiance so called, a friend who moved...

Treachery and the Teenage Boy

Dec 15 2011

Last year my son was so upset. My husband and I were moving into separate living and it was very messy; my husband was older and becoming demented. After things were settled, I was assessing the needsfor my child. I hav always been a fairly 'boots and all' mum, but also giving lots of freedoms. My son told me he felt underparented and had done for the year that we had just left. I vowed...

The morning pain and Mr Narny

Dec 14 2011

Mr Narny is a crazy banana dog toy. He belongs to my chihuahua Max and he languishes in our garden; in trees, on the porch, anywhere a person might throw him and a little dog leave him when somethingbetter beckons. 

Max knows his toys by name. There is Dick Puppet, who is used to play a game where he pushes the toy off the top of the sofa or chair himself. This game is called 'Ki...

I send everyone else around the bend. Again.

Dec 14 2011

One thing about having any kind of disease where your brain is a bit iffy; it means that people can really mess with your head. I find that since the PN and especially since the MRI which showed themucked up white matter, or what my daughter Hollie called the pissed off poodle, people are inclined to blame any anger I feel on that head of mine. 

 I reckon this is unfair. It goes...

Cat for a hat.

Dec 11 2011

I have a little world on my back porch in which I am not ill and I am not powerless. I call it Gimptasia in my photo albums, and when i feel myself drifting into a place where fury is going to fly out and hurt me it is where I go to try to find something real that is good. It used to be the garden; my vegetables and herbs and their progress. i would stalk the yard and the various beds and prest...

Through the Looking Glass - the second lap

Dec 09 2011

I had been having tingling in my fingers too; my hands had been falling asleep and that crafty part of my brain that I really should just take out and hit with a brick before I let it runa nything to do with my lupus,  was taking each episode as a one-off. 'Oh your elbow was on the wooden chair arm" or 'holding the book to read caused that" and other idiotic excuses. I no...

The day I got a good look at the big picture. Shudder.

Dec 09 2011

It isn't unusual for my left hand to unaware what righty is up to.  This has been the case all my life really and I think that the non Lupers must do it too. This year though, it all took a turn for the worst, and considering what had happened in the few years before, that is really saying a mouthful. 

I was puttering along happily with a little Lupus (or a lupusy thingy as...


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