Updated Bucket List – Items #1-18

Last time I reviewed my new Bucket List I had 17 items and little progress towards any of them. However, I’m now delighted to report that I can cross off one item and have made significant progress towards three others:

  1. Coffee with a friend in our local Starbucks
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motor-home (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.
  11. year long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  14. Visit Harrison Hot Springs in BC
  15. Go indoor skydiving
  16. Attend the Albuquerque International Balloon Festival
  17. Go on a picnic

Yesterday, with a great deal of help from my friend I was able to cross off #1. In fact we went a step further and didn’t just meet for coffee in Starbucks but we actually met for coffee in a small local mall. Thankfully, it doesn’t have a juice/smoothie vendor and the food court is small enough that between us we could keep an eye out for potential concerns.

On arriving at the Mall we had a quick review of how to give me an Epi Pen (just in case) and then had a small wander around the mall. My first time doing so in about 6 months. Unfortunately, the cleaning machine was out, and in use, for part of the mall and that scent was too strong for me to manage so I didn’t make it to the book store. However, we did have coffee! The cleaner in the food court very kindly agreed to clean the bathrooms while we did, rather than washing the floors and tables down, at that time. It seems that the cleaning services in the Mall all use a citrus/strong scented solution for washing the floors.

Kai alerted a couple of times that I needed to use my inhalers and ultimately that we needed to leave, due to scents and my reactions. I’m so proud of him.

Funnily enough having decided to make this alert extremely obvious while we were in the hospital (jumping on, & pawing at, my head literally) he remembered how to do it more subtly, but still insistently, yesterday. If I didn’t know better I’d think it was deliberate on his part as a few patients had commented on not seeing him working, not realising that his usual alerts are very subtle and not obvious unless you’re looking for them. He can’t really have decided to show off, can he?

I am so thankful to have a friend who was willing to ensure that she was completely safe (unscented) to be with me, and to then look out and advocate for me. Unfortunately I can’t often advocate for myself as I can’t get close enough to the scent to ask the person concerned if they’d help me out.

So #1 is completed! Though it will definitely stay as a goal to meet on a regular basis.

I’ve also made good progress towards items 9 & 10 (Acceptance of RADS diagnosis and limitations that places on my life & Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.)

It’s a fine balance. Much as it was great to get out of the house, and meet for coffee yesterday it took a lot of courage to do so and I needed a lot of help to make it safe enough.

It’s all about living in this moment.

In this moment there isn’t a citrus fruit or product in my vicinity so I enjoy it. I need to be cautious and take appropriate precautions but I’m not going to give up on life just because I know what could kill me & how likely that is. I could still get hit by that proverbial meteor!!

Oddly enough I’ve also made some progress towards items 6 & 12 (Waist length hair & Lose steroid weight and return to a healthy weight).  I realised how much longer my hair has grown over the past year when I braided it for the first time in a while during my hospital stay and the braid came quite a lot further down my back. My hair is still very fine and my entire braid thinner than most people’s bangs…. but it’s growing!

Also, despite eating hospital food I actually lost some weight in the hospital. I’ve still got a long way to go to get back to a healthy weight , after the impact of the steroids, but I’m finally not going up every day!

So given my recent success in meeting item 1 I’m going to replace it with a new item. At least once a month, taking appropriate precautions, get out and do something social.

I’m also adding a new item to my list. At least once a day, do something creative. That could be as simple as writing this Blog or colouring. Alternatively it could enable my trying out a new craft, or one that I haven’t done in a while, or can’t do as well as I used to so rarely do anymore. It could be writing a poem, a story or exercising my somewhat limited artistic talents. It could also be cooking a meal or baking something that’s a little more complicated than taking it out of the box! Just because I’m only cooking for me it doesn’t mean that I don’t deserve to cook an interesting meal for myself.

So here’s my updated list. The items in italics are those that I’ve made good progress towards!

  1. At least once a month, taking appropriate precautions, get out and do something social
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motor-home (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work
  11. year long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  14. Visit Harrison Hot Springs in BC
  15. Go indoor skydiving
  16. Attend the Albuquerque International Balloon Festival
  17. Go on a picnic
  18. At least once a day, do something creative

How’s your Bucket List coming on?

NB. Please note that Epi Pen’s come in cases. So to use one you need to take it out of the case first. Then it’s…

Blue to the Sky, Orange to the thigh

Which means take the blue cap off and make sure that end is towards the sky, swing the pen and ‘stab’ the person with the orange end on the outside, fleshly part of their thigh (through their clothes) and count for 3 seconds. Call for an ambulance and paramedic service.

If there is a delay in getting emergency services you may need to give a second pen. Most people with severe allergies, and known anaphylaxis reactions, will carry several of them on them. I also carry inhalers and liquid Benadryl which can also help buy me some time.

The Epi Pen needle is on a spring within the orange section and the blue cap releases the safety catch for it. You are never exposed to the needle. So it’s completely safe for you to give to somebody else if they need you to.

Happy Guy Fawkes night!

Growing up in England the 5th of November was an event to look forward to each year. In school we’d talk about the history of the night and why we celebrate it. We’d use coloured pens and black crayon to create pictures of fireworks and the night itself, was the one night in the year that fireworks were allowed.

When I was little you might be lucky enough to have them in your own back garden. As I grew older the rules became stricter and it was far more common to attend a community bonfire and fireworks display; though sparklers still prevailed throughout.

There’s nothing quite like writing your name in the air with a sparkler, as you stand by a roaring bonfire waiting for the spuds (jacket/baked potatoes) to cook in the embers of fire.

guy-fawkes-activities-for-kids

We’d often learn the poem about the event (below) by heart and it would be recited in our school assembly on the school day closest to the 5th of November.

In comparison to Canadian holidays, Guy Fawkes night is similar to a combination of both Canada Day and Thanksgiving, but with different food! We save turkey for Christmas!

The Fifth of November

Remember, remember!
The fifth of November,
The Gunpowder treason and plot;
I know of no reason
Why the Gunpowder treason
Should ever be forgot!
Guy Fawkes and his companions
Did the scheme contrive,
To blow the King and Parliament
All up alive.
Threescore barrels, laid below,
To prove old England’s overthrow.
But, by God’s providence, him they catch,
With a dark lantern, lighting a match!
A stick and a stake
For King James’s sake!
If you won’t give me one,
I’ll take two,
The better for me,
And the worse for you.
A rope, a rope, to hang the Pope,
A penn’orth of cheese to choke him,
A pint of beer to wash it down,
And a jolly good fire to burn him.
Holloa, boys! holloa, boys! make the bells ring!
Holloa, boys! holloa boys! God save the King!
Hip, hip, hooor-r-r-ray!

English Folk Verse (c.1870)

For those of you that don’t know the story of Guy Fawkes; the simple version is that in 1605 he and his fellow Catholic conspirators plotted to blow up parliament and kill King James I in the hopes of ending the persecution they had felt under the reign of the Protestant Queen Elizabeth I, and that continued under King James I. They failed, were captured and were sentenced to death for treason. Guy Fawkes himself, jumped to his death from the scaffold platform. Regardless his body was still quartered and each piece sent North, South, East and West respectively as a deterrent to others.

To this day, parliament is searched the night before it reopens each November in memory of this event. Likewise, many of the bonfires will be topped by an effigy of Guy Fawkes (a scarecrow) and children will ask people for ‘a penny for the Guy’. In more modern times, the effigy may well be made to look more like a current politician.

If you’re interested in more information on Guy Fawkes night the English newspaper, the Telegraph, has a good write-up here.

As a child growing up in England, Guy Fawkes night was an integral part of autumn (fall) and was far more celebrated than Halloween. Though I understand that that tradition has now crossed the Atlantic and that Trick or Treating and Halloween has become as big an event there now too.

However, once Guy Fawkes night had been celebrated you knew that Christmas was really on its way!

Personally, I love the irony – only the Brits could have an annual event that celebrates attempted treason!

Today I hurt…

Today I hurt
It’s a different kind of pain, one that is deep-seated and long-lasting
That tells of years of prayers and dreams lost

I once worked so hard to achieve these dreams
I poured every single part of me, and then more, into making them real
Always putting others first, the way I thought that it should be

Then I slowly came to realise, that when I give of my all
I have nothing left for me
And that you cannot give from an empty pail

That pail doesn’t get refilled when those you love, don’t care
That pail becomes rusty and battered if you don’t take care of it
For nobody else will

So I started to take care of me
I gave them choices and said clearly that this is what I need
They ignored my cry and continued to take without love or respect

I tried harder still to meet their every need
Torn in every direction, never approved of, never enough
I cried again, please, please listen to me!

They continued to take
One left, to get what they wanted and to force me to comply
With their need to control every aspect of my life, to keep me in my self-inflicted prison

The other continued to lock me in, to put me down
Nothing that I did was ever enough, I gave and I gave and I gave
They continued to take

Finally, I said enough, I can’t give any more
I need your respect; I need you to listen to me
They refused and I warned them over and over again

They didn’t believe, for how many times before have I said enough
But continued to give, to pour from an empty pail
To give and to give and to give

I warned again that this time, enough was enough
That I had reached my point of no return
That they would be burning bridges, I had no more left to give

One lit the match and tossed it at me and wondered why
I didn’t rush in and expend my every last breath putting out the fire
This time, I let it burn. Remember, I have nothing left to give!

The other then returns
Their selfishness abounds
They use that first burned bridge as excuse as to why I am not enough for them

They have no idea of the years, and years, and years of pain and torment
That came before, of the warnings given
Even that in my allowing one bridge to burn I was still trying to protect the other

The second lights the match
It’s not been tossed in yet, but soon
It’s being waved as a threat right now

They should learn from the first
I have reached my end point, there is nothing left to give
I will not accept such selfishness anymore

I will not give, and give and give
I have to take care of me
I literally don’t have a choice for my every breath is a fight

How sad, that in my time of need those I love have hurt me the most
That those who should put me first, are all about themselves
Their needs, their wants, their desires

All at my expense
How dare I take care of me?
How dare I try to repair my pail?

How dare I ask for help from those that help me patch my pail?
Those that help me slowly, oh so slowly, start to fill my pail
How dare I not do everything to stop them toss that match?

I am no longer defined by how others see me
I am defined by how I see me
I am strong, I am a survivor; if bridges have to be burned so be it

I will not allow my fear of being judged by those that only know part of a whole, who have not lived my life,
Who were not there when I reached out for help, but rather pushed me back down
Stop me from finally taking care of me

I will no longer place all others before myself
To love others, I have finally learned that first
I have to love myself

Breathe….

I can’t breathe
Breathing is such a simple thing
Something we never think about, we just do, thousands of times a day
No thought, no planning, no care
Until we can’t

I can’t breathe
My lungs are tight
My chest, my stomach, my back – they all hurt
The pain vacillates between a dull ache and the stark stab of a switchblade
I’m tired

I can’t breathe
Medication, exercise, steam; I’ve tried them all
Rest, sleep, breathe; rest, sleep, breathe; and repeat ad infinitum
Sleep creeps in like a thief in the night
I still don’t feel rested

I can’t breathe
Asthma, COPD, bronchitis, pneumonia, infection, inflammation
Osteogenesis Imperfecta, thyroid, Reactive Airways Dysfunction Syndrome – RADS
The list is long and increases daily
None bring relief, they’re just names on a prescription pad

I can’t breathe
Talking or walking; either is fine for just a moment or two
Any longer, I have to stop, to rest, to think about how to breathe – in and out, repeat..
I can’t do both together
I feel over one hundred years old

I can’t breathe
I never smoked, others did
Am I paying for their indulgences? How is that fair?
Housebound now for over a month, avoiding all scents and triggers
My life is very small just now

I can’t breathe
Natural products started this path
Ignorance is not bliss; it kills;
Originally, close to death, now home to rest
It’s a little easier now, compared to then, small comfort

I can’t breathe
Patience, one skill I obviously still need to learn
Putting myself first, another
When breathing is hard, the decision is not so hard
For putting another first likely brings my own death

I can’t breathe
Anxiety, panic, stress… work to reduce them all
Mindfulness, radical acceptance, CBT, DBT, a veritable alphabet soup of skills
I use them all
I still can’t breathe

I can’t breathe
I’m tired, I’m done, Finished…
This has gone on long enough
Diagnoses abound – none that I like, for all say that only time will heal
Time, how much more time?
How much more patience do I need to learn?
I can’t breathe, I have no choice, I have to rest
I have to wait for the passage of time
I can’t argue anymore
I don’t have the energy
It takes all that I have
Simply to breathe

breathe

The grief that can’t be spoken

Today, she turns 7
The child of my heart, my baby girl
Not so much a baby, anymore

But today I can’t celebrate
I don’t get to feel joy
Instead, I live with the pain

Of a failed adoption
My baby girl, my daughter’s niece
Was kept by another

No rules were broken
So the ombudsmen said
“Unethical but not illegal”, brings little comfort

Nobody told me that this could happen
That my daughter could be ripped away from me
That I’d be left with a hole that only she ever filled

That I’d be left trying to help my older daughter understand
That being truthful is still the only way to live
Despite the “system” conspiring to take away her hopes and dreams

Her niece, her sister… another family member she no longer lives with
Another lie, another win for others
Why should she try? she cries

Being truthful and honest almost killed you Mum
I’m not going to live that way
For it only brings you pain

Lying and stealing is the way
Planning and manipulation win the day
Look who has my sister, my niece today!

So today I grieve
I grieve for the baby I lost
I grieve for the older daughter who lost her niece/her baby sister…

Yet both are grief’s that can’t be spoken
For my baby girl turns 7 today
She’ll have a birthday party and celebrate with her extended family

That doesn’t include me, her Mum, the one who first took her swimming
For her first hair cut, to see her birth mother’s grave
The one who took her so many places, we had so much fun

Saw her first steps, heard her first words
Took her dancing, traveling
The three of us, our little family… so many plans…

Her aunt, my older daughter was also lost that day
The day we learned that I would no longer be my baby’s Mum
That another family had won a fight that I didn’t even know needed to be fought

All progress stopped, all gains lost
Why work for truthfulness?
When lying gets you what you want?

No time to grieve, all I could do was try to help my daughter through
To see that honesty is still best
That stealing will not fill the hurt she feels

Five years on, She learned well, this daughter of mine
Not the lessons I’d hoped, not the lessons I lead by example
All she saw is my pain, my failure to win the ‘game’ that I didn’t even know we played

Why play that game?
When she can win at theirs….
She doesn’t yet see how much she’s lost

So today I grieve…
My baby girl turns 7 today
She’s lost to me, but yet she lives

My older daughter chose to leave that day too
In mind, in spirit, in values
She no longer tries

So today I grieve, for what could have been
Another loss that can’t be spoken
Another child lost to me, but yet she lives

Grief’s that can’t be spoken
Are the loneliest to experience
There is no grave to stand at and weep, No place to visit and mourn

Just the loss of what once was
The grief’s that can’t be spoken,
Are just pain that must be born

overcoming-loss-quotes