#4 How Do I Decide What To Share #NHBPM

Today is day 4 of WEGO Health's National Health Blog Post Month (#NHBPM): "How Did I Decide What To Share. What Do/Don't I Share."

And on the sabbath! *mock horror*

So how did I decide what to share?

It was easy.

Everything.

Everything relating to MY LIFE "living" with a chronic illness.

I see things in black and white.

I am learning to find room for some grey in my life.

A sliver.

It's a start.

Just not fifty shades!

After suffering a nervous breakdown I was diagnosed with an "extremist personality", clinically known as Borderline Personality Disorder (BPD), Mind, Wikipedia.

I now know I had a nervous breakdown because of undiagnosed hypothyroidism.

Either way it lead to a diagnosis.

Eventually.

Dark Days.

Black.

Metaphorically my life with chronic illness is now grey.

(If you are wondering: yes, I do "do" irony)

Not yet into the light.

But progress.

I digress.

When I started this blog the only way it would work for me was if I told the whole story.

No sugar coating.

If I was to help myself and others.

Everything.

Honesty is important to me.

I have trust issues.

I believe that democracy has to be secular.

So too my blog.

Hypothyroidism > Hashimoto's Thyroiditis > Thyroid Health > Chronic Illness > Mental Health > Gluten Free.

This is MY LIFE.

I have room for little else.

But when I do.

I've even been known to share my joie de vivre.

Remember, for as long as we have hope we have a chance.

#3 I Don't Know About This, But I'd Like To #NHBPM

Is it only day 3 already?!

WEGO Health, I will hunt you down, and when I find you I will jab my finger at the nearest #NHBPM poster and utter these immortal words...

"I don't know about this, but I'd like to."

*blows raspberry*

This pretty much sums up my life "living" (am I living a LIFE?) with a chronic illness (the autoimmune disease Hashimoto's thyroiditis resulting in hypothyroidism).

"Living" my LIFE through a laptop screen is a sobering experience.

It is my portal on the world, my health cost me my job and my dignity (forced to "beg" for welfare benefits).

One of the many ironies of my LIFE is that on the rare occasion I feel up to doing something/anything I do not have the money.

A familiar tale of woe.

Boring.

"Whaddya gonna do."

*in best Tony Soprano voice*

Enough.

Looking for answers, if I had a penny for every time I've thought: "I don't know about this, but I'd like to."

Well you know.

So what prevents me?

My disgustingly poor memory.

An unwelcome symptom of hypothyroidism.

I can invest a not inconsiderable amount of time researching/reading/listening and a little less than fuck all actually sticks.

The more demanding the material the easier it slips into the abyss.

But.

Hope keeps me coming back for more.

"I don't know about this, but I'd like to."

I do exactly the same thing when daydreaming about the LIFE I would like to live.

A futile fantasy.

Acceptance/denial is a battle to be fought every day.

Every day.

But, hope keeps me coming back for more.

So on that note.

See you here tomorrow?

Remember (irony! *winks*), for as long as we have hope we have a chance.

#2 The Weirdest Thing About My Health #NHBPM

Oh yes, it's me again!

Are we all getting the hang of things?

Then I'll begin.

The weirdest thing about my health is...

The abject disconnect between every "healthcare professional" to cross my path and my reality.

It's enough to make one paranoid.

I am not.

I can be at times.

I AM NOT.

The online community of dedicated advocates and fellow sufferers provide more than enough evidence to the contrary.

Quite a quandary I'm sure you'll agree.

You see, I'm in the exclusive club of hypothyroidism sufferers for whom the standard treatment of synthetic T4 hormone replacement therapy (levothyroxine tablets), adjusted until blood tests are "in range" DOES NOT WORK.

I am special.

I am still trying to get used to this revelation.

Not one "healthcare professional" I have encountered has confirmed my specialness.

Weird.

My obsessiveness? Yes.

But special? No.

Here in the UK my "treatment" is governed by fear.

Not one "health professional" had shown any desire to treat my symptoms.

They pay me lip service.

Do they respect me?

Do they think I am a malingerer?

Do I have a choice?

They make me feel like a simpleton.

It's not very nice.

Weird, right?

Remember for as long as we have hope we have a chance.

#1 Why I Write About My Health #NHBPM

I am back.

I am sorry.

What is this blog post all about?

Please allow me to explain...

November 2012 is WEGO Health's National Health Blog Post Month (#NHBPM)...

2012 may be winding down, but Health Activism is going strong. Let’s rejuvenate our blogs and do one last advocacy project before we head into 2013.

You may have heard about National Blog Posting Month or NaBloPoMo, a month dedicated to the art of blogging, taking it to a new level by pushing all participants to blog every single day of the month.

Well, we are doing our own Health Blogger version all month long. NHBPM 2012 is here! Sign up now to join the 30 day carnival and get 60+ prompts catered specifically to online health leaders, bloggers, and anyone who wants to try their hand at blogging about health.  

We'll also be spotlighting your health blogs throughout the month of November so be sure to let us know if you're interested in being featured.

 WEGO Health : Join National Health Blog Post Month


A little more information about WEGO Health...

WEGO Health is a different kind of social network, built from the ground up for the community leaders, bloggers and tweeters who are actively involved in health online. WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities. And it’s free.

Our goal is to equip our network with opportunities designed for the active contributor,relevant content, powerful educational resources and shareable interactive media. We hope that the bloggers, tweeters, and community leaders that we call Health Activists will find inspiration, strength and support here.

WEGO Health : About Us


I would have liked to have been able to embed the above pages within this blog post, to make it look more "proficient" (whatever the word is to describe that it looks like I know what I'm doing), but I do not know how to do it... or if it is even possible in blogger... I could not find any help.

That is the housekeeping done, on with the show...

WEGO Health have found it in the kindness of their heart to provide a prompt for a blog post for each day of November.

The prompt for today is (as if the title of this post did not give it away!)...

"WHY I WRITE ABOUT MY HEALTH"

A good question.

I started this blog in the summer of 2010. It seemed like a natural progression to my increasing awareness that hypothyroidism was a chronic illness, it was not going anywhere, and that I had it for life.

So I had better get used to it.

I still have not got used to it.

I still think that one day I am going to get "better".

I write about my life with hypothyroidism to try to make sense of it all when those around me in the "real world" think it is "no biggy".

When I began to educate myself about my illness I found a beautifully fragile and complicated online community. A community where I was accepted. With open arms. Where people understood.

Where I found hope.

Hope is why I am still here today.

I will not give up.

I now know (and feel) that I am not alone on my journey through life.

A beautiful inspiring thing.

A comfort blanket for the dark days.

You are welcome to share in my journey.

See you tomorrow.

Remember, for as long as we have hope we have a chance.

We Are All Advocates...

Advocacy, in the wider sense of the word, has been on my mind lately... has piqued my interest if you will...

ad-vo-ca-cy n., pl. +cies. active support, especially of a cause.

ad-vo-cate vb. 1. to support or recommend publicly; plead for or speak in favour of. ~n. 2. a person who upholds or defends a cause; supporter. 3. a person who intercedes on behalf of another.

By lending emotional support to others: we are all advocates.
By opening up and being honest about our suffering and triumphs to friends and family (even if this falls on deaf ears): we are all advocates.
By writing, reading, or commenting on blogs: we are all advocates.
By joining, reading, or contributing to facebook pages/support groups: we are all advocates.
By doing our own research, educating ourselves, and increasing self-awareness: we are all advocates.
By hoping for a better treatment outcome, deserving a brighter future: we are all advocates.

You see where I'm going with this...

We are all advocates.

As much as I would never wish my suffering on my worst enemy (OK, a few *winks*) I will be forever grateful that I live in the "internet-age"... I shudder at the thought of what would have become of me if it were not for the world-wide-web, if I think too hard about it the internet still boggles my mind, it beggars belief!

Imagine having to go to the library to find out whether you really were losing your mind. Me? I was able to have my nervous breakdown in the comfort of my own home, and not until nearly six years later did I get a laptop and access to the internet... they really were the lost years (2000-2005 incl.). Then the painfully slow education process could begin, all the while meeting resistance at every turn in the real world... self-doubt was gorging itself by now, with my sanity the prized morsel.

It wasn't until this point that I discovered there were others... cue Pink Floyd, Comfortably Numb...

I may have mentioned before that I do not like to spread myself too thinly (just as well as I'm a fat fucker!) and value quality over quantity. The thing with the internet is that it is so easy to go off at a tangent (rather like this blog post!) and before you know it you are lost and your well intentioned starting point is but a memory... a road we all have to travel at least once...

Anyway, I have settled on what I consider to be reliable and trustworthy sources of information and first-person support: facebook pages/support groups, twitter, other bloggers.

My starting point though is always a good old-fashioned book, the excellent Living Well With Hypothyroidism by Mary J. Shomon. The balance of this book is just right for me.

Mary's other resources:

On facebook: Mary Shomon: Thyroid Patient Advocate, Author. In the last two years the number of "likes" has increased from 4,000 to over 15,000 and counting...
On twitter: @ThyroidMary.
On About.com (Part of The New York Times Company): About.com Thyroid Disease.
Website: thyroid-info.com.
Newsletter: Sticking Out Our Necks.

Mary has been the trailblazer in the world of thyroid patient advocacy since the mid-nineties, can you imagine the path she has travelled? Amazing. The internet has fanned the flames of patient advocacy, nothing more so than social-networking: facebook and twitter in particular. We are a virtual community connected by cyberspace and our numbers are heading in one direction and our voices will be heard.

With this in mind I have been made aware of an online petition by a fellow blogger, a real sweetheart, Sarah Downing of the blog: Butterflies & Phoenixes at SarahJDowning.com. Sarah is a wonderfully talented writer and it is an honour to call her my friend (Butterflies & Phoenixes facebook page).

I know, I know, the petition already!

The petition is titled Endocrinologists: Patients With Thyroid Dysfunction Demand Better Care and is the brainchild of  Michelle Teresa who was joined in this endeavour by Denise Rodriguez and it is their intention to affect change for the greater good of all thyroid patients, now and in the future. I don't mind telling you that such selflessness makes me go weak at the knees! *winks & chuckles*

Please take a couple of minutes to read all about the petition and do not forget to sign it!... remember, together we can affect change.

There is also a facebook support group: Patients With Thyroid Dysfunction Demand Better Care.

The petition is hosted by www.change.org: "Our mission is to build an international network of people empowered to fight for what is right locally, nationally, and globally. We hope you will join us."

If you require further proof that Sarah, Michelle and Denise are not too good to be true please read the interview Sarah conducted with Michelle and Denise on Sarah's blog: Butterflies & Phoenixes.

I can smell revolution in the air... and we are all in it from the beginning... history will be our friend.

We are all advocates. 

It feels appropriate today... never forget... for as long as we have hope we have a chance.

Thinking Aloud (Allowed?)...

So, what's going on?

With me?

Well for starters: I am not being a very good blogger! All the "how to blog" guides tell you to post regularly so that your followers can get in a rhythm. But I am sporadic at best.

There are many reasons (excuses) for this... and they are all on me. But do not worry... the flagellation and self-loathing has been turned up to eleven!

Many of you will know by now that my Borderline Personality Disorder (blog post: Introspection) is a daily struggle for me, and that when I think too much (as if!) it becomes... as if by magic... even more prevalent in my life.

I have been thinking a lot lately.

It is what I do.

It has a name... procrastinating.

I am sorry.

But I am here now.

Anyway, since my last endocrinologist appointment (Endo The Line?) I have begun researching, at my own pace, my options going forward, it goes something like this... and yes, I've been here before...

Do I go down the adrenal fatigue route first?

Or, do I explore the NDT (Nature-Throid) way forward?

Sounds oh so simple, but it throws up LOTS of questions... to which I need to find answers...

I am crippled by indecision.

Eventually I hope to assemble some sort of "thyroid 101" that makes sense to me... yeah right!

So I am going to prepare my own crib notes on the topics I need to get to grips with... and I will share them with you by way of blog posts, with links to the source information where necessary, all right and proper like. Something tangible. This exercise will serve a dual purpose... kill two birds with one stone if you will... as my hypo memory is so poor I find I have to keep re-researching, re-reading, as so little information appears willing to convert itself into acquired knowledge that is happy to make a home for itself, and commit for the long-haul, in my beautiful cranial cavity.

Why didn't I think of this sooner? D'oh!

Fail to prepare, prepare to fail. I do not want to fail. I have heard it said that there are people who would jump on in the deep-end no bother, sink or swim, but I need to dip my toe in the water first. You see, I am terrified of making a mistake that has serious consequences in the long-term.

I am also filled with doubt about everything thyroid.

My belief has been rattled.

Why?

Because not one "health professional" has shown even the remotest interest in my health/wellness/quality of life going forward... they all appear to be following an agenda to which I am not privy but which feeds my wild, self-doubting, imagination. And to make matters worse... my family feed these doubts with their total lack of empathy or support, bordering on a total disinterest, when it comes to my battle for wellness. My brother flat out doesn't care and my mother is of the persuasion that all doctors are above and beyond reproach.

I have been living back home for 8 months now and their attitude towards me breaks my heart.

If I can find the strength to ask for help I can be saved.

I digress, back to the crib notes... the first topic I will cover, and share with you as I think aloud, will be on adrenal fatigue...


Just don't hold your breath *winks*


For as long as we have hope we have a chance.

Endo The Line?...

I made it to my appointment with a new Endocrinologist at a different hospital. Different location, different faces, same old bullshit!

I'm feeling: sad, disappointed, frustrated, incredulous, angry, FUCKING PISSED OFF! Every cell in my body is telling me one thing whilst the health "professionals" are telling me something else.

Maybe I'm wrong and everything I've read and "learnt" is bollocks. Maybe I should just give up, go to that dark place. Maybe...

Maybe not! Do they not know that I am HypoMan?

I. AM. HYPOMAN!

And the fuckers have not got me beat... yet.

I need to retrace my steps to the very beginning and learn and learn and learn... knowledge... power... awareness... a great big "fuck you" to the health professionals who have let me down.

Let me recap for you what happened...

I was up at 5AM so that I would be "awake" enough to leave home at 7:30AM to make it for my 10AM appointment (the traffic to Cambridge during rush-hour can be a real bitch!). I arrived early as planned. I was pleased with myself that I had managed to get there what with the anxiety I felt and my history of panic attacks.

So far so good.

I knew that mentally I was far from my sparkling best but being a first appointment at a new place I thought I would see what they offered, go with the flow, roll with the punches...

First off a nurse performed the usual: height (6feet 2.5inches... where did the half inch go?), weight (127kgs or 280lbs... little by little), blood pressure (lying down and standing OK... can't remember the numbers).

Then the Endocrinologist asked for my medical history, greatest hits only, you know the drill. I thought: fair play, you are taking an interest. Next we went through all the results from the extensive blood work (7 vials) taken last week.

Liver and kidney function: OK. This is a positive as they have been cause for concern in the past.
Glucose (blood sugar): a little high. But I had not been told to fast before bloods so need to get test redone.
Ferretin and iron: OK. Did not get numbers/ranges etc. Need to get details from my GP.
Vitamin B12: OK.
Vitamin D3: a little high, 121 when above 125 is over-treated. Will reduce supplementation from 4,000IU to 3,000IU.

Right, thyroid numbers as at 1st May 2012 on 8ml/160mcg liquid suspension thyroxine (in brackets numbers as at 8th February 2012 on 162.5mcg synthetic levothyroxine):

TSH: 4.4 (0.44) range 0.35 - 5.5. A significant increase in TSH. Only explanation I can think of is the potency of the liquid medication as opposed to the synthetic stuff. Scientific I know. Now you can see how I dazzle any health professional put in front of me. Seriously, I've been feeling off the boil, maybe I need to tweak my medication up to 8.5ml, 170mcg equivalent, see how I go. Thinking.
FT3: 4.8 (5.2) range 3.5 - 6.5. Quite a drop. Needs further investigation.
FT4: 15.4 (17.4) range 10 - 19.8 (11.5 - 22.7). Do not understand if any significance here. Different ranges too, wtf!?

What's going on with my TSH? But get this: Endocrinologist not concerned as "in range" (that old chestnut!) despite previous Endocrinologist insisting a TSH of between 1 and 2 as being optimal. Is it any wonder? Who's on message? Consistency is all I ask.

Dream on.

This next bit is a real doozy... as my thyroid bloods are all within range there is categorically nothing wrong with my thyroid function. My symptoms appear to be due to depression, DEPRESSION! No, no, no, no, no, no, NO!!!!

It was at this point I knew I was fucked!

I  picked myself up off the floor to request a trial of NDT all the while trying to block out the voice in my head laughing at me and my futile attempt to seek the wellness I deserve.

Needless to say: not alot happening on the NDT front... the same old excuses and lies. The 1,700 prescriptions of Armour Thyroid in 2010 (just checked: 2,600 in 2011 a more than 50% increase year on year!) must have been "private prescriptions"... so little respect for me, quite an impression I must have made, that lying to my face took less than 30 minutes!

For once I would like to hear: "oh, that is interesting. I was unaware of that but I will look into it, see what I can do and write to you when I have the information available. After all your health is our priority."

You can stop laughing now.

As something of a compromise the Endocrinologist agreed to discuss my case at the lunchtime team meeting to see if a trial of T3, to supplement my T4, can be agreed upon. A letter would be sent to my GP, who would then contact me, but who is not obliged to follow the recommendation of the Endocrinologist. I can't see it happening, can you? Especially if it is stated that my blood tests show that my thyroid function is normal.

So here I am. That age old battle between good and evil: the Endocrinologist believes it is all in my head: depression. Whereas every fibre of my being is telling me it is physiological.

I was so sad when driving home from the appointment that all I wanted to do was cry... but there are no tears left to fall...


For as long as we have hope we have a chance.