World Lupus Day

Do you know, my blog has been running for 2yrs and today, Calum (CEO of Ionic Balance) called me out that I have had the header of my blog spelt wrong!!!! I had Litertray instead of Littertray! anyway, Mr Liptrot, I have it fixed now  I actually can not belive for 2yrs it had sat there with an obvious spelling mistake and no-one either noticed or told me LOL…slap on wrists for all of you *grrr*

I hope everyone is feeling good…I am bearing (somewhat) with the school easter break…counting down to Tuesday (5 sleeps) until they get back to school….I wouldnt have minded but the weather has been horrendous so hardly getting out.

I had a horrible chest infection the last 2wks too, which hasn’t helped matters.  Not to mention sinusitis and an inflamed jaw apparently a flare.

I recently joined Lupus UK became a member, and also purchased a Lupus Awareness band (you can see it in the pic with my new Lupus tattoo in my last post) and also a Lupus Awareness Shopping tote.  It’s often a conversational starter with the lady at the checkout who spots both and wants to know what Lupus is.  I usually start with, Have you heard of Rheumatoid Arthritis (As I know most people have, but again most are misinformed about the disease) well its similar except it attacks organs and skin as well as the joints.  Usually I am met with, but you are so young to get that…yes, yes I am! But again, its down to misinformation, or just pure ignorance, and the annoying fact that RA is not arthritis as we know it (why do they not drop that word!) There is no age limit as to when you get an autoimmune disease, you can be 1 month or 100yrs it can strike at anytime, no reason, no warning, it just happens.

So obviously on my quest to read all thing spoonie, I discovered there is a World Lupus Day on May 10th 2012, I have made the pledge to raise awareness, so come May 12th I will facebooking, twittering  and blogging all things Lupus. I am lucky I have friends and family who understand…LOL they have no choice, but I am often met with people who question why my hands are deformed (when in flares state) whey I limp, in flare state, and these are complete strangers.  But I dont get upset by the questions, they may not be touched by Lupus now, but who is to say they wont be in the future.

Normality resumes and RA Guy’s project

Finally, the kids are back at school and the husband is back to work, normal scheduling can now resume.  This week has been tough on the kids, they were getting to used to their late nights and late mornings, so getting up at 7:15am while it’s still dark outside has been a shock to the system.  Now on Thursday, the grumpiness has settled into them

We started training again on Monday, if you are a regular follower of my blog you will know both myself and the kids partake in Taekwondo….this is something my rheumatologist has advised I give up….if you are regular follower of my blog, you will know I am a stubborn biaotch who refuses point-blank to give that up! (*disclaimer* I am however very sensible, if I have a flare I will not do the kickboxing side )

My TKD instructors’ partner has just launched her new fitness classes and asked that I join her on Tuesday morning to give her a bit of moral support. It was bad enough going back to TKD/Kickboxing on Monday night having not trained for 2wks, and man, did I pay, I had to literally roll myself out of bed the next morning, to get myself to her class. I thought, being relatively fit anyway her class would be ok…yesterday,I walked around looking as I have just lost a horse…I am in pain, and it’s not a Lupus pain, I have been told it’s a good pain…since when has pain ever been good?!

Needless to say, TKD was given a miss last night.

Work has also commenced this week, have been busy designing the new website for the company, have secured the domain name so hopefully get it up and running shortly.  Since my Lupus diagnosis, not sure if it’s the illness, medication or just age, I find my memory is not as good as it is, also wonder if its down to the fact my brain was not being used to its full potential since I have been at home for the kids for 9 years, so this is something I am interested to see if there is a change.  I am very very lucky to have a boss that is very understanding of my illness, he has outlined that my health is priority then my family, work should be the bottom of my ‘life list’ It helps that he has known me for 2 yrs now and has seen what this illness can do to me so understands if I can not go into the office due to fatigue or flares, those kinds of people are very hard to come by.

I also FINALLY got my 2nd Rheumatologist appointment, which has come in 2 months late! I was supposed to have received my appointment in November, *rolleyes* I am going to see him next week, be interesting to see what he has to say, as I have been flare free for 2 months now.

Just want to sign of by sharing an awesome project with you.  I have been a follower of R.A Guy since my diagnosis last year, he has always had valuable advice, and it’s not just about Rheumatoid Arthritis, as you know there are many  AutoImmune diseases under one umbrella.  Anyway, he has launched a fabulous project, called Show Us Your Hands, which showcases the many beautiful hands in various states of flare and even hands that are not flared, the only thing these hands have, is they belong to people who have an auto-immune disease, check it out

If you want to take part with the project, you can share your image with RA guy at his Facebook page or on his Show us Your Hands FB page  My hands are there

Happy New Year…

By golly time has gotten away from us hasn’t it I hope you had a wonderful Christmas whatever you were doing.  I was very spoilt by my husband and kids…I was presented with a beautiful MacBook Air So I have been going through this learning curve with it, I love it, and now I am ‘Apple’d out’ with all my appley gadgets  Whatever opportunity I have had I play around on my Mac discovering new things…the control/command function does take a bit of getting used to.

Regarding Clyde our elf…with the kids off school, blogging about Clyde was a bit difficult, so I will just do a quick blast of pictures

Husband received a lovely hamper full of yummy goodies from a client, which Clyde could not resist!

Clyde trying to built his own Christmas Grotto

Brave Clyde

My Favourite…I had a special photo album on my personal Facebook page that had various pics of Clyde and the Kids (for obvious reasons the ones of my kids won’t be published here), lots of family and friends had been following Clyde, and if I had not got a picture up of him I would have a wall full of messages wondering whats happened to him…so, I posted this one on his last night with us and I was hit with lots of messages pleading with Clyde not to leave

This was a special one for the kids I also got lots of pics of them with Clyde saying goodbye to him, the blue child was really upset to see Clyde go back to the North Pole…but, it was short-lived due to the fact that the big red man was not only taking Clyde home but will be arriving with presents.

And boy, did they get presents!! Christmas was a case as for most, a time for over indulging on food and drink, wishing the family would get back to work and school by the 2nd.

I haven’t made any new years resolutions, it was my 1yr anniversary of quitting smoking That I am super proud of, it’s still difficult at times, and boy after the year I have had I don’t know how the heck I managed to stay of the cigarettes!

I look back at the year with much sadness and trauma, between my Bells Palsy, the Rheumatoid Arthritis diagnosis, which was then changed to Lupus, and also the loss of my beautiful fur baby Molly….This year I am determined to make 2012 a better year, obviously those things that happened to me last year were unavoidable, it was going to happen regardless and, although I went through a grieving process with my Lupus diagnosis, towards the end of the year, and mainly thanks to many other Auto-Immune advocates out there, I am learning to live with the illness.  2012 for me continues to be a year where I will keep practicing my taekwondo, and possibly will do another 10k run.

Other than that, I am also starting work next week, I was approached by my TKD instructor, who is rapidly expanding his classes and locations to become his Marketing and IT Manager, he wants to now focus purely on his classes and have a small team work alongside him.  It will be nice to get back into the working environment, and I also get to work during school hours, during school holidays he runs a camp for the kids and my kids go to them anyway so childcare at work is an added bonus

Anyway, whoever you are and wherever you are, I sincerely wish you a happy healthy 2012 and thank you for following me for another year

Spoonies are inspirational

The other day, as I was in one of my fatigue states, too tired to focus on anything, too tired to sleep…I was channel hopping.  I have over 100 channels on my tv, yet there was nothing on.

I ended up watching some of The Michael Jackson Trial.  As a nurse was testifying, I heard the word Lupus.  Apparently, MJ had Lupus.  I had not known this, but then, why would I? I wasnt a huge fan of him, yes there were some songs of his I thought were ok, but I never ever owned an album.  Also, I never heard of  Lupus, if I did, and I was a fan of his would I have looked it up? Probably no, because it didn’t concern me.

However it got me thinking…how many other celebs out there suffer with AI disorders…of course, when my ickle brain goes into overdrive however fatigued, I will google, and google I did….here we go!

Aida Turturro (Actress best known for playing Janice Soprano) – Rheumatoid Arthritis

Alex Lideson (Musician/Guitarist) Psoratic Arthritis

Amanda Davenport (Chef hells kitchen) Lupus

Bob Mortimer (Comedian) Rheumatoid Arthritis

Bobbie Brown (Model and actress) Lupus

Cindy Crawford (Author) Lupus

Dorothy Hodgkin (Nobel Prize Winner) Rheumatoid Arthritis

Elaine Paige (Actress/Singer) Lupus

James Coburn (Actor) Rheumatoid Arthritis

Kathleen Turner (Actress) Rheumatoid Arthritis

Kellie Bryan (R&B Singer/Songwriter) Lupus

Kelly Drury (Actress) Lupus

Mary McDonoughs (Actress, Erin Walton ‘Waltons) Lupus, Fibromyalgia, Sjogrens

Mary Norton (Designer) Lupus

Melvin Franklin (Musician) Rheumatoid Arthritis

Michael Blake (Screenwriter) MS

Michael Jackson (Singer/songwriter) Lupus

Michael Wayne (Producer) Lupus

Rachelle Breslow (Author) MS

Seal (Musician/Singer/Songwriter) Discoid Lupus

Terry Seymour (Actress) Lupus

Toni Braxton – Lupus

For me, these people show, through diversity they continue to do what they enjoy doing, they try to lead a normal life as possible, even though they could be struggling.

This also shows that AI Disorders can live with anyone, regardless of their race, gender and class…it could strike anyone.

I was told by my doctor to quit my sports, especially Running and Taekwondo, both of these sports are my passion..unfortunately yes, my sports are high impact.  But I listen to my body if I am in pain I just wont do it, or I will lighten up the load…I am blessed to have a TKD instructor that is understanding and supportive and he will work around me, and because of that I refuse to throw in the towel.  I think its important to keep active, but also, just because I have an AI disorder, does not mean I should quit living.  My sports ARE my life…and these celebs are testimony that they continued, to the best of their ability, to keep living with their passions.

I am reminded, that I may have Lupus, but Lupus does not have me and I wont let this illness beat me, not yet.

Oh, and while I was researching, I discovered this fabulous video.

Musician Rob Thomas, wrote this song ‘Her Diamond’  which was inspired by his wife, also a Lupus Sufferer and its about him feeling helpless as all he can do is watch her suffer…it brought a tear to my eye.

Arthritis?? Why??

On June 24th 2003 my whole world changed….I awoke at 10pm in searing pain, I sat and listened to my Doctor as he told me, ‘No, she is ready’  just over 12hrs later, my first child came into the world,  4 days early.  My whole life changed that day, my husband of a year and I were now complete, we were now a family…..

Fast forward….June 24th 2011, 10am, I sat and listened to my Doctor as he told me ‘We think you have Rheumatoid Arthritis’  My whole life changed that day, a wife of 9yrs a mummy of now two young children, and only just 3wks before, turned 37.

I was too young to have Arthritis….I guess I am like any other newly diagnosed patient, when you hear the word ‘arthritis’ you automatically think of elderly ladies and gentlemen bent over, walking slowly with the aid of a zimmer frame.

I left the surgery that day, with just the knowledge I would be referred to the hospital to see a specialist…maybe, the doctor did give me information at the time regarding the disease…but I honestly think I just heard the word arthritis and focused out of everything else.

I told my husband this is what the dr thought I had, and he was of the same mind set…’you are too young to have arthritis’

I KNOW!!!!

A few weeks later, I found myself sitting in the specialist office….a Rheumatologist…never heard of a Rheumatologist before, but I thought I would be told to exercise and here is a pill and you will be ok, it might come back in 50yrs, it’s just a warning….

I wasnt told that.

Apparently, the bloods I had taken showed that I did not have Rheumatoid Arthritis….’YAY’ but instead it showed Lupus!….’BOO’

Wait…what is Lupus??

The ‘Specialist…AKA Mr Rhuematologist  informed me that it fell into the same bracket as RA, but it just attacks differently..RA will most often attack the joints around the bone which will in turn, if not properly treated will start attacking the bone itself….Lupus, will attack the joints also, but most often will attack organs, such as Kidneys, heart, lungs etc.

You have the same kind of illness, but it’s not arthritis as we all know it, this is an AutoImmune Disease, for some unknown reason the AutoImmune System has become confused and stopped working correctly and instead of the system fighting against infection, it, for some reason is fighting your body.

So why, then, is this call Arthritis?  Arthritis as we know it, generally attacks one part of the body, usually knee, hand or elbow….however the Arthritis, that is in the AutoImmune Form attacks the entire body, known as ‘flares’ on top of that, the patient suffers from Fatigue almost daily.

The only similarities between the two forms of arthritis is it’s not cureable….However, those (from what I have read in various articles) with say, osteoarthritis can have various treatments and may go some considerable amount of time without any pain…whereas there is no treatment other than painkillers that can stop the flares in an RA/Lupus/Fibro/PSa patient there is also no known triggers for RA/Lupus/etc patient,s but, someone with Oesto could be aware of something they do which may trigger joint pain.

So my question to the big scientists/doctors/researchers out there is why tag us with the Arthritis name? It’s not and never will be Arthritis, they are two separate entities…my type of Arthritis is an AutoImmune Disorder (I don’t like the word disease either!), this is also, in my opinion, what confuses friends and loved ones, I know of someone who does have osteoarthritis in their hip, and the only time they get pain is if they do heavy work, maybe occasionally something else will trigger the pain, but what I am trying to say is, this patient usually knows what will trigger it.  But yet someone with RA has no known trigger they are in constant CHRONIC pain..thus the confusion…on one hand you have arthritic patient who can muddle on nicely…on the other hand you have arthritic patient crippled over in pain…are they different or the same?

To me they are different…different patients…different cases…different illnesses.

So us #Spoonies should not be classed as arthritic, we are not, we have an AutoImmune disorder, so the word Arthritis should never be included.

KittyCat signing out as a proud spoonie!