Today I ask for help from all Lupus Patients, Friends and Families

Today’s post is short and sweet.

Please go to the below link and register your outrage at the NICE decision NOT to allow Benlysta to be used in the NHS in Britain. I beleive the words used were SOMETHING along the lines of :” it is not  a cost effective decision to prolong the lives of Lupus patients with this drug”.

Support out World Wide Lupus family…sign now please, and share the link.

http://www.thepetitionsite.com/1/cover-Benlysta/

Thank you

Oh Dear!!

NOTE TO PERSONS SEARCHING FOR INFORMATION ON LUPUS…THIS BLOG DOES NOT REFLECT EVERYONE’S EXPERIENCE WITH LUPUS. ONLY SOME PERSONS EXPERIENCE CNS INVOLVEMENT!! I AM ONE OF THEM. YOU MAY NOT BE.

I try not to allow Lupus to stop me doing things but oh my did I learn a lesson today.

You see I am doing my Certificate IV Associate Diploma  Bridging Course in Occupational Health and Safety. As a precursor I had to do a rather large assignment last week, which I managed to achieve and it is all nicely bound and presented, if I may humbly say so, This in itself was a pretty good effort, as I filled a late cancellation and only had a few days to do it, instead of the month usually given.

This morning I planned to drive to the station and catch the express train to the City, walk the 3 blocks to the venue, and reverse the plan this evening.

So, I wake up, feeling not too bad, make my lunch, throw a yoghurt, a couple of pieces of fruit and my nibble mix into the bag, actually remember to take my assignment and a pen (miraculous) and head off to the station. Arghhhhhhh.

I got to the station and found I had forgotten my wallet, so NO train ticket. Too late to go home, I look at my fuel gauge, YES!! I have enough to drive in to the city….woot. So off I go.  M1 on ramp at Loganlea Rd CLOSED..detour ….2o minutes of queuing on the service road to the next on ramp.

For once due to school holidays the peak hour traffic was flowing fairly freely so arrived in plenty of time. Parked in the allocated disabled carpark that I had previously teed up in case I was not up to the 3 block walk and in I go.

The morning modules were a breeze.

So to the AFTER  Lunch Session………….Now I don’t know how many of you are familiar with Legislati0n speak, but the Act, Rules, Codes of Practice, and Guidelines are in legal Speak and in numbered  Sections, Chapters, Clauses, subclauses ad infinitum.

I know I have real problems now with brain fog, but as soon I opened those books to start looking up relevant Clauses and things the numbers literally DID something to my brain. I could NO LONGER make ANY sense of the page, I could no longer write properly, and I could no longer think coherently. The pages swam before my eyes. I could not read the words after the numbers. In short I changed from a coherent, verbose and intelligent  respondent to the sessions,  into a total babbling nincompoop. This scared the crap out of me and I now wonder if my brain lesions have given me some sort of number Dyslexia (Is there such a thing?) as the difference was horrific. And noticeable. I could no longer read my own  my handwriting. I could not think clearly, I could not reason.

Perhaps the fluorescent lights had something to do with it, or the fact that it had been 5 hours since I had taken my medications, but whatever it was, I had to approach the Trainer and ask for help. So tomorrow in the open book section I will be part of a four person group. Today the groups were in threes, and as there were two people left over it was myself and a person who had absolutely no experience with any of this, and had very poor english skills to boot.

Why did today scare me? I am a good student, a quick learner, intelligent. well read, totally GOOD at my job and can rattle off relevant legislative requirements at the drop of  a hat. I can do a site audit, identify hazards,  do a  risk assessment on said hazards, risk rate it, and apply control measure to said risk assessment. I can write Safe Work Method Statements, design and publish safety posters and write instructions on anything Safety related. I have a very good knowledge of my job and achieve what I set out to achieve.

It scared me because I think my Lupus has affected some of my cognitive abilities quite severely, and I am so worried by today I will be speaking to the Immunologist about it when I see him in October.

Am I alone in this?

My Life with Fairytale creatures..I BELIEVE!!

Saturday  night  I met a Giant. I didn’t see him, and I didn’t hear him,  but I Know he was there. How ? He jumped up and down on my feet until he mashed them into painful, swollen lumps. I didn’t know he had visited till I got out out of bed and tried to walk to the bathroom.

Unfortunately he brought the Goblins with him. Goblins are unsavoury little beasts with lots of sharp needle like teeth. They had a little chew in  my  hands and, for good measure, hit up my knees as well. Thanks guys! I did have plans for a beading day. uh uh, not happening now.

I also kissed a  frog. He left me with lumps and rashes and bumps all over… not playing nice Froggie.

Then of course let’s include the Gremlins. Gremlins are a particularly nasty wee beastie. They like to break things and throw a spanner in the works.

If you read my last post, “Desperately Seeking Spoons – and a Makeover” you would know I had a big weekend planned. Sooooooooo to cut a long story short, not only did the wedding use all my spoons, borrowed, lent or owned (thanks Guys), it also took my Sunday spoons away and and partly used my Monday Spoons as WELL!! I did, for the first time ever barring holidays and trips away, manage to NOT attend a Lupus Event. I was so ill and rashy by 10pm Saturday night I did not know how I was going to make it through the night. So I missed the Lupus Diamonds in the 5km event in the Bridge to Brisbane 2011, AND the Recovery Brunch as well. Thankfully there are pictures, because I am SO proud of the team. GO LAQ Lupus Diamonds. You rock and I love you all.

I do feel slightly better today, and am back at work, but my agenda this week includes blood tests and a skin biopsy on the rather unslightly strawberry red Hive Rash on my tummy, back and thighs. And I say Phooey to that!

This brings me to The Big Bad Wolf. Oh yes, he definately exists, and he is a very nasty piece of work. Beware beware he’s out there and likes nothing better than to rain on your parade. I had a metaphorical Umbrella but next time I will be armed with deadly weapons..Wolf Skin Rug Anyone?

Desperately Seeking Spoons – and a Makeover..

here I am, I have managed another working week successfully, although I definitely flagged by Wednesday.  I have done a lot of sleeping yesterday and today. (Because I CAN as I live with my mother and she understands Lupus Fatigue).

Well, I’ve done it again! I need spoons in mega quantities. I am again OVERCOMMITTED.

I have a visit to the Vet today for my Pushka Kittie’s yearly check up and vaccination then I have to attempt a manicure on my rotten nails.  Rotten because in conjunction with splits, my jewellery making causes breaks as well. Sigh…pre Lupus I would religiously manicure every Sunday Evening and I had lovely nails.

You see, I have a wedding tomorrow, an important wedding, a special wedding, as my lovely niece Michelle is getting married after what may well have been the World’s longest engagement.
Therefore I MUST try and look like I DO NOT have Lupus. I know it is an invisible illness, but for me at the moment, my pain and fatigue show in my face, my walk, and in the lovely Lupus holes in my arms and chin.  Because Lupus just  loves to rain on your parade.

Well I have news for Wolfie (to paraphrase my Lupie mate Kristel) !!! I have an Umbrella for my Parade!! I WILL look gorgeous. I WILL walk upright and gracefully, and I WILL survive the day. What is my Umbrella. It’s that inner strength all Lupies seem to have, along with the very delicate Art of  saying “I’m Fine” and looking like you mean it. . This is possibly the most common lie we Lupies tell, but, you know, if you say it often enough you might even believe it. In addition to that, looking great helps you feel great so here I come World…

So, to survive tomorrow will be great. Then comes Sunday.

We Queenslanders are walking in the Bridge to Brisbane 5km Fun Run.

We will  be slathered in sunscreen, wearing long sleeves and hats, and possibly someone will be carrying a walking stick in their backpack, Someone else may be wearing a bandanna due to hair loss, someone else may be covered in bruises due to ITP or Medications. We may have someone we don’t recognise this year as they have been put mega Steroid Therapy and now have different build and features. There is a good chance there may be a wheelchair in the mix. There was last year. Someone from last year may be missing due to major illness.   But the “Lupus Diamonds” will walk proudly. We WILL !! And we will celebrate like triathletes winning Gold at the after Brunch.

I will get home around 3pm, but WAIT  there’s MORE.  A 45 minute drive to the Gold Coast for Dinner with the Lovely In Laws. My Mother In Law is visiting, and goes home on Monday, so Sunday night is my only chance to catch up.

So please all send, lend or give me your spoons. I think I may Need them. Happy Weekend Everyone.

I don’t like Sundays….Because Mondays are next!!

Today is a difficult day, as Sundays always are for me. Sunday is the day before my working week starts and I always mourn the un-done and the partly-done jobs, especially those I had promised myself I would attend to definitely, positively and absolutely. Sunday there is always a special meal to be made, as my husband comes home for his days off and I like to have a full on home cooked meal for him. I find that a sometimes difficult thing to achieve, even though I love cooking.

Today I did not sleep very late, so you would expect that would give more time to get “Stuff” done.  First a cup of coffee and a handful of pills, then to a cheats breakfast of Cornflakes, a precious ($10/kilo)sliced  banana, and a sliced strawberry, cold milk, all imbibed while sitting outside watching Kookaburras and bees herald spring (soon please?) in the gentle indirect sun…..there’s a rash coming somewhere on my body from that little indulgence.

Noooooooooope – no relaxing here ….today is Pharmacy Day…and hooray.  Good News this morning. At LAST I have reached my prescription threshold., Instead of $280 – $300 a month on scripts I will now pay about $40 till the end of the year. I am now in a race to get them filled every 21 days at the reduced price till the end of the year, so I have a bit of a stash for next year.

A little teeny meander through Lincrafts and Riot looking at beads and findings,  a teeny (I promise) purchase of more stock, then home.

To do……very damn little. I am TIRED, my joints hurt, my mouth is full of ulcers and my skin is red, blotchy and peeling and flaking. So I indulge myself (and the kitty) by brushing her for an hour…she is a Chinchilla and starting her spring moult. My hands and arms ache, but her purring is worth it. Let’s face it, MOST things make me ache or hurt SOMEWHERE. A long brush is for my sanity..those Kitty Bunnies breed like mad things and end up all over the house.

A long visit and Coffee with an expectant friend, a donation of 2 of my  bracelets to her charity for lost and stillborn angels, and then home again to husband, who works HUGE and Long days, snoozing in his armchair whilst the TV blares on a Western Movie. No wonder Mum has retreated to her sitting room. BUT, bless him, he’s home safe and that matters.

So   – my day is gone, I did Bugga all, and you know, I truly don’t care. I enjoyed it, and isn’t that what counts about days off.

Tomorrow I work, and my next day off is Thursday. I am sure I will manage to fill it with lots of nothing as well. Sometimes lots of nothing is actually a huge amount of work , because its healing time.

 

How do I feel today?

I have a story to tell about why you need to constantly educate yourself about your disease, research it and document EVERYTHING! I started out trusting doctors and have since been totally let down by the Medical System.

I have spent the last 10 years knowing I had a positive lupus Antibody test in 2001 whilst  experiencing possibly the worst flare on my life. I was swollen, sore, covered in rashes of all sorts, including in the scalp, and my face puffed up like a balloon, until I could no longer SEE through the slits that had become my eyes.

However, I changed GPs in 2006, and this was my Great Lupus Undoing.

Following my Heart Attack in 2006 the Cardiologist referred me to A Rheumatology Clinic at a Major Hospital in Brisbane. After Numerous visits, and only returning high  ANAs, extreme Rheumatoid Factors, high C Reactive Protein readings and high Alkaline phosphatase readings, but no anti DS DNA, the Rheumatologist’s quote was “You have something Autoimmune happening but we don’t know what. Come back if you get sick”

Hello! I WAS sick.’

I was also  losing feeling and control in my legs and arms. My GP referred me for testing and the Private Neurologist confirmed a Neuropathy. However the Rheumatologist had previously answered my inability to turn the car key, hold things, or  open things with “You should see an Occupational Therapist”. This was for me the last straw. I KNEW  how to use aids to make life easier. I wanted ANSWERS to both my neurological and All body disorder.

Following a series of episodes of blindness I was referred to a Neurologist at the same hospital. He was useless!! Ultimately given my fathers history I demanded a genetic test. This came back positive for hereditary Neuropathy with Pressure Palsies, meaning I have only the maternal copy of the pMp22 gene on Chromosome 17, so my body  manufactures incomplete myelin, the protection on the the nerves. This causes progressive numbness and pressure damage in the nerves. SO, still no explanation for my other Neuro symptoms, blindness, balance problems,cognitive issues, white matter lesions on MRI etc.

I asked for a referral to an Immunologist as my problems were not being resolved, and it was obvious something was going on. I asked him for the results of the Gene testing. He of course had not read them. Once I asked the question it was a different story.

Finally from being considered a depressed menopausal hypochondriac I was taken seriously on the other matters.

I got copies of every blood test I had ever had, and gave them to the hospital. However no one even READ them.So I fed those to the Immunologist too.

Suddenly I now have a Re-diagnosis. Mixed Connective Tissue Disease. This is a Lupus like Disease with many shared feature of lupus, however without the proof of the Specific Lupus antibodies. He believes I have Lupus, but have not yet been lucky (??) enough to have the antibodies at time of blood tests.

SO how do I feel today?

Vindicated!! After years of steering people in the right direction, making sure they HAD the information to hand to assist in diagnosis, and Spoon Feeding them the information  I am on TREATMENT!
I am not too pleased to be told I have Vasculitis, Sjorgrens Syndrome, and Reynauds Disease as secondary illnesses, and I shudder to think of the damage that has been done by lack of treatment previously, but now I can at least see a little light at the end of the tunnel.

I think the most frustrating things are:

Once a doctor, (Any doctor) says you do not have a certain disease it is the only thing they see.in your file and they fail to listen or investigate.

If you get a label as a hypochondriac, or research your own symptoms because they won’t you are again labelled.
I don’t know if my Immunologist was having a good day when I saw him last week, but if I had not once again asked him to LOOK at my bloods for the last 10 years, WITH all the Lupus/MCTD markers highlighted I would still be untreated.

Perseverance has finally paid off but it should NEVER have got to this Stage. The Medical Profession has a long, long way to go.

An Open letter to a Doctor/Specialist or Health Practitioner..an Oldie but new to my Blog

Dear Doctor

 

I am dropping you a line to let you know a few things about me. I am not a nameless patient. I have LUPUS, but I am not LUPUS.  I am an individual . Please do not roll your eyes and give me that “here we go again’ look. Try getting to know me. You might learn something.

 

Please do not give then take away my Lupus diagnosis without looking carefully at the history. One spotty young interns comments do not a diagnosis take away. Oh and NEVER say to a patient, “Well you have something Auto Immune going on but we don’t know what, come back if you feel worse.”.. SO  do some investigations already..MORON. I have LUPUS.

 

Please do not trivialise my symptoms without investigating them. That WILL come back to bite you AND me in the arse..I have LUPUS, the Great Imitator.

 

Please do not poo poo my comments,  opinions, and remarks. I HAVE been right, OFTEN! It WAS  hereditary demyelinating Neuropathy with LUPUS CNS Involvement. Sometimes the informed patient DOES know better than the doctor. I have LUPUS but I have to research because YOU won’t.

Please do not presume I am making up my symptoms just because they are not present at examination. I AM keeping photos and a diary now!!! HA!! I have LUPUS..things come and go..

 

Please do not feel it is necessary to inflict maximum pain in a procedure like an EMG just because you can. The test results are the same with smaller currents. It measures the speed of transmission NOT the strength..you sadistic henna-ed frizzy  headed hag. I really DID NOT enjoy having muscle spasms in my legs for the next 4 days. I have lodged a complaint. Oh and please learn some bedside manners. A smile WON’T crack your face. Oh and shave your pits or learn about d-e-o-d-o-r-a-n-t. I have LUPUS, I am NOT a lab rat.

 

Please take note of my comments about drawing blood. I’ve probably had more blood drawn than you’ve EVER seen you snotty nosed pimple faced geek. I have LUPUS you FOOL!

 

Please do not gloss over my questions or ignore them. I am a “need to know “person and I have the right to understand what you are are saying. I have LUPUS, if you don’t know about it I have to!

 

And Doc, If I present at your office and say I need help NOW, I am right..I am strong but I have LUPUS, I know my body, my disease and my capacity for recovery . I am not a NUT, a hypochondriac, a schizophrenic OR a fool. I have LUPUS.

In closing Doc, thanks for all anguish, the tears, the frustration, the self doubt and the grief. I have LUPUS. Listen, learn, educate, and support. It’s not hard.

 

Yours,

 

The Crazy Old Lupie  who helps put your kids through private school and University.

 

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