The delightfully 'outrageous flirt' Lou has written some truly lovely things about me in this post.
If I ever needed inspiration - Lou is giving it to me - in bucketloads!
I haven't really written much about this, so thought maybe now is the time.
I will try and cut a very long story short.
In May 1999 I felt like I was coming down with 'something' - not to let this deter me however I hit the clubs with a very dear friend who was visiting, on leave from the RAAF.
The next day I could barely move.
I had a rash.
My arms and legs were beyond heavy.
I managed to see a GP.
He 'had never seen anything like it before' (my rash).
I didn't improve.
I was getting pins and needles in my head/face.
I had black 'spots' in my vision (floaters).
My hands were turning blue.
My hands shook and I started dropping things.
From here I saw doctor after doctor -a neurologist (who told me I had a severe anxiety disorder, and basically to take a valium and get over it), a second neurologist - I flew to another state for this one - to be told I have migraine. I also saw a physician and several skin specialists - all very different diagnoses.
The fatigue lasted many months.
My weight plummeted. I weighed 52kg (114 pounds).
In the end I resigned myself to the fact that I was just mental, lazy, or simply undiagnosable.
As quickly as it arrived - one day I woke up and my arms felt really 'light'.
It was gone.
Approx 6 months later - it was back with a vengeance.
This led to further pointless doctors appointments.
Actually - the only doctor that ever believed this wasn't all 'in my head' was, interestingly, Z17 ADD specialist - a psychiatrist no less. I think he would have a very good idea of what crazy looked like. If it weren't for his support I may have gone over the edge because of the hell those doctors put me through.
Eventually, after many MRI's, blood tests, you name it - I saw a rheumatologist in around 2003.
He gave me a diagnosis of Lupus.
I honestly believe he told me this to shut me up.
After giving me the diagnosis, loosely based on symptoms alone (I have NEVER had a positive blood test for Lupus), I was put on plaquenil first, which didn't work, then steroids.
At the last visit rheumy told me to 'come back when your major organs start shutting down'. Nice.
I decided my GP was the best person to manage my medication.
The steroids worked well, it was amazing to feel 'normal' again.
These were increased from 30mg per day - to up to 75mg per day.
I ended up taking these for over 6 months.
Every day I could feel myself 'puffing up' a little.
In the end I had gained around 15kg (33lbs).
Coming off the steroids was awful - for the first few weeks it was much like being back to square one.
Emotionally - I was spent. Having spent such a long time feeling terrible, with breaks in between of feeling normal, and the scathing comments from these 'specialists' took their toll.
I even lost 'friends' over this.
People that didn't believe me.
People that told me I was 'depressed' (I did try anti-depressants for 12 months, just to prove a point - they didn't make the slightest bit of difference).
I am better off without ALL of them and haven't missed a single one.
I retreated into my shell.
I was always afraid of 'doing too much' for fear of bringing the fatigue back.
Thankfully, touch wood I haven't seen any sign of it's return.
I know the warnings - and heed them!
The pattern is usually a burst of energy which lasts for a few days - I start spring cleaning or something similar - then I fall into a heap.
I may never know what the cause of this was.
But I did find out who my friends were, and learnt how to 'cut people loose' whether they be doctors or 'friends'.
As for the doctors, in the end if I didn't like the way they treated me (the smart arsed comments, the 'oh here we go' or the 'hypochondriac' looks) - I simply refused to pay the bill.
So now, all that's left to finish is the weight I gained.
I think the steroids have mucked up my metabolism.
So as Lou explained, the process is a slow one.
But I am as determined as I'll ever be to make it happen.
The support I am getting here on my blog is helping me so much.
Thank you Lou,
G
xx
21 comments:
Ahhhh, so we begin to see what lakes you you
I like you G
You are real
and strong
Just like us all if we allow ourselves to be
xxx
Anchell ~ I like you too.
That was the sweetest comment...I have a couple of tears here - thank you
G
xx
this is a good post gina- gives some insight- i know too about the weird ass looks some drs give us- just because we make them look stupid xx
Its hard having "a condition" that the medical world can't label. I watched my mother struggle for years. I think that she may have even missed out on being adequately treated at times due to the "familiarity" of her GP. Whether an illness has a medical name, or is what is termed "idiosyncratic" (ie unknown origin or unusual)it is still illness. The trouble is, as you noted, sometimes the treatment can have a more detrimental effect than the illness.
You area strong woman, G and you just keep on acheiving on a personal, professional and family level. If you didn't share this info on your blog, none of us would be any the wiser.
Thank you.
Hang in there, kid. You'll get it all figured out in the end.
What a journey G. Thank you for sharing your story. You really are amazing. I am so sorry these physicians just gave you the runaround. Good for you for refusing to pay.
Wishing you all the best in your endeavor! I came over via Lou :) I can see why he visits you often!
I'll be back to read some more but from what I've read you have a strength of character that you should be proud of G!
Baby steps and you'll get where you're going. And yes, you should be proud about going to the bigger shopping center. Damn proud!
And with respect to the weight loss, if you don't mind me adding my two cents worth (I'm sure you have received 100s of conflicting pieces of advice) I have found over the years that I have a MUCH easier time eating healthy if I get my exercise in the morning. It's almost as though I think "Well I've already walked/run/gone to the gym... no sense screwing it up now."
But if you're not a morning person I understand. I love the quiet, seeing the sunrise. Yes, early early morning cause I have to be back home to get my son out of bed by 6 to leave home at 7.
Give it a shot if you can fit it in to your routine. Gets your metabolism going a bit faster for the day too.
Will be back.
Hi G, found you through Lou. It sounds like you've really had some rough times in the last few years. I wish you luck with your weight loss, I know it's not easy. Be strong and hang in there.
Hi G,
I am one of Lou's readers from Cincinnati. I write a blog about the economy. A few years back, when I was working for the state in Columbus, I had the pleasure to meet Chris Gardner and talk with him in my office. Like a lot of people that heard his story, I told him he should write a book. Well, Chris Gardner wrote a book, and they even made a movie of his life with his young son. The movie is titled "In The Pursuit of Happiness". I think you have a story to tell too, and I would encourage you to write a book. There are people all over the world that would be interested in reading your story.
Good Luck with your health. When you get yourself back to where you are happy, you should post another picture.
Fred
This sounds so cliche, but Lou sent me. You are very strong to deal with all of this. I'm sending positive and good thoughts your way.
I want to take your hands and tell you that I feel your pain. Well, in a sort of way.
I DO test positive for Lupus. And Rheumatoid Arthritis. I've settled into accepting the RA, but refuse the Lupus part. I want to tell you that I HATEHATEHATE western medicine doctors who have told me similar to what you've heard: come back when XYZ shuts down, when your kidneys give out from prednisone (although I've never taken any of the prescriptions they've tried to give me).
I sound like a broken record because I tell everybody this: after 8 years of suffering and thinking I'd live the rest of my life in pain-- I found that acupuncture and specific supplements (as prescribed by my acupuncturists) are what control my symptoms.
I must come back and read through your archives. I've seen your name all over my bloggy circle.
Just stopping by thanks to Lou, and I have to tell you that that was a great post. I love hearing about people's real life, even if it's not always sunny.
Stay strong! The weight will come off. Steroids are so tough to come off of.
That sounds horrible! People in my family have had to be on steroids, and I know it can be hell to come off them and to have to deal with weight issues. I hope your mystery condition never comes back.
Lou sent me...
G- I hope you find more answers as you go around.
Please don't think all doctors are like that. I am going through a trial with my little boy- I think they all must running in the other direction when I come around- at least mentally.
But because I'm a pediatrician they MUST sit and smile and humor me.
I received your comment re the almond allergies. And I can't say I know for sure. Is it a sudden systemic reaction like hives or swelling, anaphylaxis to almonds or just contact dermatitis.
I have heard some people say they think auto immune disorders (And I wonder about this for allergies) are a result of a viral illness and the body reacts to this illness by creating antibodies that then ultimately react against themselves.
Hope this helps a little. You can reach me back at MommyMD.org or my other blog DrCason.org -which is my own personal blog with some photos thrown in for fun. :)
Take care.
Wow, powerful and amazing story....often we do not know what is the story behind the person...thanks for sharing this.w.w.
I know there have been a bunch of people here today, yet I see but two comments. I don't understand.
BTW, do you know if your Doctors have checked for Glandular Fever?
Keep on powering ahead. You have to learn... if you are going to be ill make it visible!!!
People like the bandage, the plaster, the crutches...
If you ain't got that ..it's all in your mind!!!
Hugs
XOOO
D.
Lisa ~ I know, and I know you know too - I ended up saying I'd rather you say "I don't know" than feeding me a line of rubbish ;-)
Cyndy ~ It's frustrating - sometimes all of the pieces don't get put together. Thank you :-)
Lou ~ I will, and thanks to you and everyones support I'm driven now! :-)
Sandy C. ~ Thank you for stopping by, and for your sweet comments - it means a lot :-)
Tash ~ thank you - I'm always open to suggestions, I have been scared of burning myself out, and burning myself early in the morning....The weird thing is I wasn't anxious/no agoraphobia whatsoever before all of this, the doctors have helped create it though :-)
Employee No. 3699 (hope I got that right :-) ) ~ Thank you so much! Lou is lucky to have such a wonderful group of friends :-)
Moneythoughts ~ I have often said "I could write a book about it" not just on this...I have a post on '100 things about me' which explains this better! I'm not sure I have the skill though... Thank you for your comment, you left me such a nice comment last time I was too overwhelmed to reply to everyone individually. :-)
Joyce-Anne ~ Thank you so much for taking the time to come over and comment - very sweet of you :-)
Hyphen Mama ~ It's a scary thing. I'm pleased you are managing without the meds - if I had my time over I wouldn't have taken the prednisone - it is supposed to strip your bones of calcium amongst other things, I had a broken rib in January and it made me wonder. I do believe in acupuncture, bowen therapy - anything alternative that helps. Thanks for stopping by, I mean that :-)
Lola ~ Thank you! Lou is a sweetie eh! I am so grateful for you stopping by :-)
Holly@Tropic Of Mom ~ Steroids can be great...and really not great. I'm keeping my fingers crossed I never see it again ~ thank you :-)
Dr Cason ~ thank you! I don't think doctors are all like that - I think living in a smaller city with few specialists gives them an idea they can be how they like ;-) My son is seeing a doctor on the mainland Aus(I'm in Tasmania) - and he is just awesome. I am going through a trial with him too. I read of your sons pneumonia - poor little guy. The almond allergy is nausea, sweating, extreme stomach pain, a little shortness of breath? I'm avoiding them like the plague, even a trace amount seems to set me off. I will stop by your blogs again :-)
W.W. ~ Thank you. I feel relieved to have written this - I was almost embarrassed by it for a long time. :-)
Lou ~ I had to do some work last night, I saw lots of comments this morning as I was running out the door again - wanted to wait until I could spend time replying to each comment :-)
Lou ~ I think I may have been checked...not so sure. My Small Man had glandular fever 2 1/2 years ago - and hasn't recovered yet - he is now suffering much like I was (very similar actually) - only he has me that understands/believes him 100%. It's a nasty thing - a cure for it would be good. Statistics show that around 10% of people that get glandular fever develop chronic fatigue.
D. I know, I know, only too well! The invisibility of it....Although people that know me well can tell when I'm 'not right' the colour of my eyes changes a bit (darker).
Thanks to everyones support I am definitely on a mission now! :-)
Thank you everyone for this awesome show of support - I mean that,
G
xxx
Stopping by to show some love - thanks for sharing your story. I found you through the big flirt :-) *hugs*
Doctors weren't forged out of steel by Gods.
Doctors aren't Gods - it's too bad they don't know that.
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