Saturday, November 26, 2011

Things I know

I was going to write in here that making your own wood fired pizza oven would improve the quality of your life...and then proceed to tell you why I know this and how you can make one too. But......

It just seemed a little, I don't know......over done.....for me, that is. So if you want to skip this post you can click over to THIS one to see how, and THIS one to see yummy Pizza.

But right now, I have a little, big story to purge from my inner lungs. Literally.

So the thing I know is, that  Doctors miss things. You know this? right.

One fine day, I woke with a cough. A cough that went like this; splutter, sneeze, cough, cough, cough, cough, COUGH, COUGH, COUGH. I here Ya, we all have coughs, but if you can imagine a normal cold kinda cough and multiply that cough by a million, then you would have my cough. On and on this fine cough went, until I was Coughing through the night, coughing through the day, la, la la, la la, almost like a little song. Not a very pretty song though. This cough went on for months and months that merged into a year.....then past a year.

Fast forward that merging monthy year to another fine day, and I am in Africa, on holiday with Wayne and our 8 month old Jonah, and his 2 big sisters. We are staying with Wayne's family. Yay, for family. So here I am COUGH, COUGH, COUGH. YUK, YUK, YUK!....on and on goes the cough.

One morning my Sister in-law INSISTS on taking me to her doctor, (because, no doubt she is sick to death of hearing me cough my lungs out ALL night.) I tell her, I have been to the doctors many times back in Oz, its just asthma, the reactive asthma that started when I was pregnant with our son and just WON'T go away, the asthma that I have been taking all sorts of pumpy stuff for and having sessions of accupunture for and LARGE amounts of herbal stinky balls to try to get rid of this cough. The asthma, that has ever so cunningly, taken over my life. Our life.

And,..... inside me, I am quietly dying. I can feel it. I can not walk from A to B without the wheeze swallowing my lungs. Stealing my breath again and again, like a proficient, familiar thief.

So,.... I go.

Mr Doctor gives my lungs the once over and listens, as they all do, but he also taps my chest here and there.... Then he tells me, I think you have pneumonia, I want to send you for an x-ray. WHAT, X-RAY? , mmmmmm....... never had one of those before.

He looks concerned.

So,.... I go.

The logistics of all this, has my head in a spin. So I give over to every one, and in an hour or so I am standing in a Johannesburg hospital having an X-ray. Feeling, oh, so..... scared.

The lovely lady doing my X-ray behind the screen, looks at her computer then looks at me.....and then actually...GASPS....... loudly ...and says...What happened to you.....? ( are they even aloud to do that????)

UM.... I DONT KNOW, what the frigg has happened to me.... I am speechless. my legs feel are on the weak side...the world is definitely spinning faster on its axis, Just... for... me. Around me there are lots of discussions about this, and that, and they take me in to speak to the x-ray looker overer dude....and he asks me this, and that.... but they give away nothing....Only that it is bad, bad and badder.

So I go back to Mr nice doctor, because he is nice, and I really think he is on to something here. He holds the results and x-rays in his fine doctor hands and flicks through the goodies. Wayne and I are standing together, with separated thoughts, but in silent telepathic union 'what the HELL is going on....'
Nice Dr asks....How long ago did I have TB... WHATY, WHATY, WHAT?........ ALL I can think of is old western movies, with old western cowboys, slowly dying of tuberculosis, in the old western bars, coughing up blood in their hankies, in their old western worlds.

This..... is all I can think of. I don't live in an old western movie. DO I?

I have never had TB. I say. In my barely there voice.

NOT so nice (now) Dr says. I have old TB scarring....... Maybe in a past life I DID live in an old western movie.

He explains that I have a tiny old scar that could be from 5 years ago or 10 years ago. But right now, it looks as if you have full blown active TB, its been going on for a while... MY head goes clickety, click click. You would think I would of been so devastated at this out come, but right then, there is just HUGE definable relief. Finally.... some one has really found out what is wrong with me.

We try to do sputum tests (ewww...)  to confirm the TB, but I can't cough up enough crap to get a proper specimen. So they send me for some back slapping therapy to expel the evil that has entrenched itself within my lungs.

I crawl ever so meekly into a hole, deep within myself as I find out more and more about this disease.

We cannot get a positive diagnosis with out the sputum test, so we are able to fly home the next week. Oh yes,...... they send me home with all that recycled airplane air..... ( I have  a strong suspicion that if they were able to get a positive on the test, we might of been hanging out in africa for quite a while....)

With a severe letter from nice doctor to give to my doctor we arrive home in the week before xmas. I promptly see my doctor, and within an hour  I am seeing a specialist, and with in a couple of hours I have a bag packed to go into Quarantine....I have more x-rays and then CT scans and then some more.

There is questions and not so many answers, either way, I am really starting to know what a leper feels like...

They first tell me that our baby cannot stay with me, and I have to immediately stop breast-feeding to make way for the truck load of medication they have to give me. Well this undone me..... I was finally, devastatingly upset...... Our son was addicted to booby, and he had always had demand feeding. And slept with us. But, well, you know, it got me fired up...So after investigation with the breast-feeding association and Monash University it was found to be ok to continue breast-feeding him and we insisted he stay with me. End of story, on that part, we were having none of their bureaucratic shit, they may have glimpsed the wild look in my eyes....or maybe they thought I had the potential to wipe out populations with my infected breath..not too sure. (Jonah went on to breast feed until he was four. yes, four.)

Sometimes specialists are arseholes who do not give a damn and only look at things one way. This particular one was a shocker.

So, after a oh so lovely positive sputum specimen, 12 different medications arrive, that I am obliged to take, cause otherwise this thing, is going to have its way with me.  Just for an added bonus along with the TB ,  I had Pneumonia (yes, nice Dr. was right), and Pleurisy, and the most devastating was the Bronchiectasis........... which caused my left lung to partially collapse. Of course. Bronchiectasis is un- F@#king fixable... It's there, because the TB went on and on and on and on...etc.

This is me, wayne and Jonah on the hospital lawns. When they finally
let me go for walk into the fresh air, wearing a duck mask. quack, quack.

In my whole pregnancy with Jonah I only put on 3 kgs.

I stayed in hospitable for 3 lonely weeks. Isolated and confined through double doors. Was on medication for 9 months. I passed this infectious disease on to our baby son, to wayne, to Wayne's 12 year old daughter, and to 2 of my best friends......and who knows who else. They all got tested straight away and all had to go on medication for 6 months. Fortunately they only had the infection and the medication was a preventive one, to stop it turning it into the disease. I felt like a piece of shit. I should of complained more to the doctors, or expressed my concern more.
I Just don't know... because,

During my pregnancy I did express my concern of coughing so much that I was worried about the baby inside me, they said it was fine....of course, it was just reactive asthma. The coughing wouldn't bother him. How can a baby rest inside the womb when its whole world is continually disturbed by a hacking movement...???
I went to the doctors many times.....

When my son was 7 months old, about a month before we went to Africa, I went to a doctor again to express my absolute exhaustion at this coughing, to say I needed something done....
He asked.....Are you well with in yourself?
 MY god, nooooooooo, I am exhausted, my mental state is fine....I just need to get rid of this cough!!
( I have seen your wife around town, with 3 tiny kids looking haggard and a little off, but thats not me mate, don't project on to me you bastard...)

He said, I had a bronchial infection and maybe I could go and have a big dose of steroids...... 
Its a good thing I didn't, cause steroids feed the TB Bug and make it grow. BIG. And I was  already having asthma pumps that were doing nothing.

This is when I went to have some accupunture to see if a little pin poking therapy could be the answer.
Yep, Doctors miss stuff.

I will continue this story at some time, cause there is more to tell. But right now, I am exhausted.

Thanks for listening and tell your Dr every detail of what your pain or problem is, even if you think its unrelated or even when they give you that look, and try and dismiss you, chances  are something will add up...... eventually.
Oh, and the big question: How did I get TB and why? I could of picked it up in Nepal when I was 18, or when wayne and I spent 6 months back in zimbabwe. A third of the population carry TB in them but may never get sick from it unless their immune system is compromised. Or in my case until I got pregnant and was run down.
As one Doctor said, some one could of sneezed on me in the supermarket.

6 rows in front and 6 rows behind me on that plane had to be notified and be tested to see if they had contracted TB...... All of the mothers and Babys had to be tested in my mothers group for TB, I never went back.

Fortunally no one was infected, but I still feel like a piece of shit.

Its been 10 years since, I was 28 years old. So as we near xmas this year I am ever grateful for my husband and family and my life since, cause you can come close to the edge sometimes. so close.


  1. It was a painful journey. Agonizing. You had such a strong spirit and still have. Love mum

  2. Wow, what a journey - I just can't believe that a chest x-ray was never given to you. Living in SA I know lots of people who have had TB, and it is a horrible thing to get. I agree that doctors are often useless - you have to practically diagnosis yourself - before they listen to you. Sounds as if you have more to share - later sometime.

  3. How awful! I can't believe the doctor didn't investigate further and was happy with a diagnosis and medication that clearly wasn't working for you.

    It's sad that the onus is on us to keep persisting until we get answers.

  4. FAR OUT! I should not be surprised by this at all. It fits with my own experiences and those of many people I know, particularly women dismissed and patronised literally to death at times. And GOOD ON YOU for fighting to keep your baby with you and breastfed.

  5. Oh Rex.... Please please please stop thinking you are a piece of shit... you caught an illness that we all think belongs in Dickens times.. definitely not your didn't ask for it...
    I've known that it's been on the increase for about ten years now, when my husband used to travel to Kazakhstan and was tested for TB regularly. It's been on the increase in London too... We all travel and planes are the best place to catch a bug or too...
    I was diagnosed with asthma and so were my two girls... I didn't believe the Dr... I took no medication and didn't give any to my girls either...we had a cleared up.
    My friends two children where on asthma medication for years...attacks, hospital every week. the daughter aged 7yrs one day refused point blank to take her meds...she never had an asthma attack this day and now she's 21.. To many things are labelled's easy!
    I'm so glad you shared your story..and you should continue many people are living in ignorance..because the local GP doesn't know what TB is... am so glad you are better and all around you are too... Hugs to you....
    If you don't mind I will link this to my site...more people should know about this illness.

  6. Thanks everyone, I know, I still cant get over the dismissive nature of some doctors and the fact no-one thought an x-ray may help get to the bottom of this. I do have more to tell of the effects of all this at some time.

    Catherine, that would be great if you linked up, this is exactly part of the reason I wanted to share this. I have been trying to write this for 8 years. I never had asthma, nor had it, I often get wheezy with a cold but that is due to the damage in my lungs now. If this can help others to demand they get the tests and thorough examinations needed for a proper diagnosis then that would be brilliant.
    I can't believe your friends children story either and the fear that is driven into people.

    I do try not to feel so crap about it, but, man I wish things had been different.

  7. Wow . . . your story is so amazing and I agree with you and your friends here, it's an important one to share.

    I consider doctors consultants--I'm the manager of my health. My medical story is not so dangerous and life-threatening as yours, but I can relate to the experience of dealing with a medical system that has missed things or has treated me dismissively. I really appreciate doctors who are aware of the limitations of their scope of knowledge and understanding; who are humble and confident in themselves enough to be open to bewilderment. I think they are the best because they truly know they are your partner in health, not the one with all the answers.

    I do hope you continue to share your story. It's an important one we can all learn from. I agree with your other friends here--I'd love for you to forgive yourself. How could you have known? But I think I may understand where your feelings are coming from--you are a compassionate and empathetic person; it's hard to accept that your condition unintentionally put others' health at risk . . . someone else in your situation may be the reason you caught the TB.

    By you telling your story, you inform the rest of us that we can and should be responsible for pushing for answers and standing up to dismissive doctors until we get those answers (don't worry about being polite, right? Sometimes confrontation is the right choice). I see your story as healing and as preventive medicine, or like an inoculation. You have a powerful voice and an important story to share and we are hear listening.

    Take care

  8. What!?! OMG, that must have been devastating for you, Rex. I can't imagine what it took to solider on through TB for so darn long... what was that all about!? It really makes you wonder, doesn't it? Such good advice about knowing yourself and questioning those that don't! x

  9. I still can't believe you had to fly to south Africa to find out what was wrong with you. To save you! See hubby's do come in handy sometimes. Lucky yours is south African. But seriously you are strong you tell your story well. You stuck to your guns when it was needed and after all that you had another beautiful bean! Roar!! Woman roar!!

  10. Wow! What an amazing journey. You are remarkable Rex.

  11. All I can say is you are a very brave lady and thank you for sharing!
    I'm so pleased to have found your blog with the beautiful sculptures.

    Take good care, Rex.
    Many blessings,

  12. I appreciate all the lovely comments here- It means a lot.

    Yay, thanks Tania as we were never going to have another bub, because of the TB, we worried if my immune system was put under stress the TB might rear its ugly little head. But 6 years later got super healthy and their I was giving birth to the golden haired girl. So happy every day, she's like a little miracle. Its like she willed herself here and said "don't forget about me"! Ha

    Auroran, you have a beautiful way of expressing your thoughts- thanks for the idea that we are the manager of our own health. I later found a doctor that was wonderful, was a GP and worked with natural medicine and new when to refer to others. So all faith is not completely lost.

    I hope this helps others too. x

  13. wow rex i never even realised how much this affected you.
    please don't feel bad at all this was never your fault. We rely on our doctors to find out whats wrong with us and to fix it - that is their job and that is what we pay them for. you were never to know that it would be passed on.

    I guess i was too young to understand how serious it was and it hasn't been a spoken about topic since but I am so glad you are alright and have told part of your story.

    i also love that mana willed her way here, the world wouldn't be the same without that bossy little beauty!

    love you all so much xx

  14. We love you too Lutey. Its just crap that you have to now carry this thing with you. ( we shouldn't of shared those apples....!) ha.


  15. wouldn't take it back. those bites of apples are memories i will never forget!

  16. I also hadn't realised how serious it was and how long it lasted. I agree with Lukes that I thnk we were too young to realise. Please don't feel bad rexy, the most important thing is we still have you and thats all that matters.

    And I cracked up when I read about Mana willing herself here - I can just picture her demanding to be a part of our family! A little 'me too' dickinson to follow JD around.

    Love you & miss you

  17. You two are so gorgeous. I am the lucky one. To have you both in my life. As much as I may have taken you under my wing, you both have taken me under yours......and what beautiful wings you both have. xxoo

  18. My comment is a bit delayed I know, wish I read more often. I take away your feelings of shit because it's nothing Rex, really truly, for me compared to what you went through. I take them away and burn them ten fold! See you soon I hope. xxx

  19. So sweet, Thankyou Leah. This means a lot. Xx