When asked recently what I enjoyed most about attending the alopecia conference, I had to think for a while. Then it came to me. It was obvious and clearly the thing I enjoyed most.
It was simply being in the same room as other alopecians.
There were about 80 people present. There were the participants who wore wigs, there were those who wore scarves and there were those who had their head uncovered ie just bald.
The people were bright and colorful, yet terribly normal. No one looked odd, no one looked strange, no one looked out of place. Even more memorable was this.
Everyone looked beautiful. Especially those who were simply bald.
They looked normal and natural.
Their heads were perfect, shiny and round. Quite simply perfect.
Those heads belonged to faces, which were kind and lovely. Shining eyes and radiant glows. These baldies were quite simply beautiful.
So that was my lasting memory.
Yet as I was reflecting on this last week, the following dawned on me. If they looked so normal and beautiful, with their bald head exposed, why wouldn't I?
Why wouldn't I look beautiful bald?
Maybe I would too.
Just maybe me too.
Planning for a hobby
We all have our habits, our rituals and our hobbies.
We all have a particular routine which we like to stick to.
We all have a preferred pattern of a day.
Actually articulating it is less easier, but we all know when something is out of the rhythm that it feels a bit odd and, like me, you may try to quickly bring the day back to a certain normality.
My day is filed with the following things:
Going to work
Now and again a trip to gym
Cooking on the weekends
Reading my book if it's an early night
Tidying the house
Doing the washing and other such chores
Going out with friends
Checking Facebook and reading blogs
Texting and face timing/sky ping friends and family
Watching television
I think that list fills my weeks, months and years.
Of course there are other things that creep in, like shopping, sending presents, ironing, garden work, doing a jigsaw, baking a cake, sorting out old things, visiting the school, flying away for the weekend, repairing the kids clothes, and the like, but the above is my staple.
My life, like yours, is pretty full with the staple activities. Once these have been done and taken care of there isn't much time left.
Herein lies my musing for the day. I find when I am in that rare situation that I have time and energy left over after fulfilling all my staples, I find myself at a loss.
It is in these moments, I wish I had a hobby. I imagine that if I knitted, or played the piano, maybe that would be the thing I would turn to. Instead, in absence of that hobby, I do more of the staple. I tidy some more, watch more television or give someone a call.
It is in these moments, I panic (well mildly). I wonder what it will be like when the kids have gone, when weekends are quiet and there are no bedrooms to sort, no bags of clothes to recycle, no games to play and no parks to go to. Will I need to find something new to do? Will my staple not be enough?
So my thought for the day, is do we need hobbies?
Do you have one?
Do I have one?
Do I need one?
Do I need to plan for one?
Or am I overdoing this, and actually there will always be enough to do.
Thoughts anyone?
Wig shopping is fun!
This week was my birthday and I was totally spoilt. I got an abundance of gifts, many of which really touched me.
On the actual day, I chose to have the day off work. This ensured that I was in control of the day. As much as I like my colleagues at work, just the thought of running to meetings, with no time for a loo break, just didn’t seem to be the birthday I was looking for this year.
So instead I took the day off.
I also planned it. My husband and I were to take the 7.48am bus to the train station to ensure we get to Freiburg for 9am. Surgical planning!
In Freiburg is my amazing hairdresser.
I had called her a few weeks ago, asking her to get many new wigs for me to try on during my appointment, with the intent to buy 2 or 3. The appointment was set.
Isn't it interesting how time helps.
Ten years ago, when my alopecia was starting out, no one could have told me that for FUN, and on my BIRTHDAY, I would be choosing to spend it picking wigs.
But its true, it’s now fun. I would prefer to pick wigs than go to spa!!
I tried on quite a few and each one, gives you a different look, a different vibe.
My husband is bolder than me and encourages me to try more daring things and get the wigs cut into something a little modern or daring.
It's so nice to have someone with you Someone who tells you what you need to hear. Someone you trust.
So today my alopecia blog is a reminder. A reminder that time helps and heals most things. Something that was once considered a nightmare or even unconceivable is now something I plan for and look forward to.
So anyone out there who knows someone at the early stages of hair loss, tell them there is hope.
Lots of it.
PS I ended up buying four!!
On the actual day, I chose to have the day off work. This ensured that I was in control of the day. As much as I like my colleagues at work, just the thought of running to meetings, with no time for a loo break, just didn’t seem to be the birthday I was looking for this year.
So instead I took the day off.
I also planned it. My husband and I were to take the 7.48am bus to the train station to ensure we get to Freiburg for 9am. Surgical planning!
In Freiburg is my amazing hairdresser.
I had called her a few weeks ago, asking her to get many new wigs for me to try on during my appointment, with the intent to buy 2 or 3. The appointment was set.
Isn't it interesting how time helps.
Ten years ago, when my alopecia was starting out, no one could have told me that for FUN, and on my BIRTHDAY, I would be choosing to spend it picking wigs.
But its true, it’s now fun. I would prefer to pick wigs than go to spa!!
I tried on quite a few and each one, gives you a different look, a different vibe.
My husband is bolder than me and encourages me to try more daring things and get the wigs cut into something a little modern or daring.
It's so nice to have someone with you Someone who tells you what you need to hear. Someone you trust.
So today my alopecia blog is a reminder. A reminder that time helps and heals most things. Something that was once considered a nightmare or even unconceivable is now something I plan for and look forward to.
So anyone out there who knows someone at the early stages of hair loss, tell them there is hope.
Lots of it.
PS I ended up buying four!!
Social media experiment
Unintentional as it was, I underwent a social media experiment this weekend.
On Facebook, I posted over the whole weekend what I was up to and what I was eating,
This included comments and photos.
Here is the first one just to give you a flavour.
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It was my weekends menu!!!
These postings were not as random as they sounds, you see I was on my own for the weekend, hubby and kiddies at Grandma's for the autumn break. I was therefore unusually home alone all week, working. However being completely unaccustomed to being on my own without plans, I was quite excited. And as such shared my thoughts and activities on Facebook.
Here a picture of my Saturday breakfast
Two things came out of this, unplanned social media experiment.
1. My friends in the area called me and texted me, to see if I needed company and activities, as such I got invites for lunches, dinners and cinema outings. Interestingly, none of which would have come, had my facebook friends not been aware of "my status" coming from my public sharing via social media.
2.Facebook portrays life brighter than it actually is. It's not that I wasn't having a lovely time over the weekend, on my own, but I did not post to Facebook the fact that I actually had an awful cold and had had many sleepless nights due to headaches and general breathing issues. My comments and photos just showed the good stuff.
Thus my friends were commenting on the fact that I should be drinking wine with all my yummy favourite food. However, what I had neglected to post, was the fact that I could barely breathe, so what was the point. There was no chance.
So all in all, I had a splendid weekend with lots of (virtual) interaction and great food. In addition I also learned that if I am lonely and want company, Facebook can help. Secondly, a remimder about the world according to Facebook. Don't be misled into believing what you see on Facebook. Only the good stuff is shared. All is not what it seems!
With that, time to go and welcome my family home!!!
On Facebook, I posted over the whole weekend what I was up to and what I was eating,
This included comments and photos.
Here is the first one just to give you a flavour.
It was my weekends menu!!!
These postings were not as random as they sounds, you see I was on my own for the weekend, hubby and kiddies at Grandma's for the autumn break. I was therefore unusually home alone all week, working. However being completely unaccustomed to being on my own without plans, I was quite excited. And as such shared my thoughts and activities on Facebook.
Here a picture of my Saturday breakfast
Two things came out of this, unplanned social media experiment.
1. My friends in the area called me and texted me, to see if I needed company and activities, as such I got invites for lunches, dinners and cinema outings. Interestingly, none of which would have come, had my facebook friends not been aware of "my status" coming from my public sharing via social media.
2.Facebook portrays life brighter than it actually is. It's not that I wasn't having a lovely time over the weekend, on my own, but I did not post to Facebook the fact that I actually had an awful cold and had had many sleepless nights due to headaches and general breathing issues. My comments and photos just showed the good stuff.
Thus my friends were commenting on the fact that I should be drinking wine with all my yummy favourite food. However, what I had neglected to post, was the fact that I could barely breathe, so what was the point. There was no chance.
So all in all, I had a splendid weekend with lots of (virtual) interaction and great food. In addition I also learned that if I am lonely and want company, Facebook can help. Secondly, a remimder about the world according to Facebook. Don't be misled into believing what you see on Facebook. Only the good stuff is shared. All is not what it seems!
With that, time to go and welcome my family home!!!
Gowning
I am often in production environments where you need to "gown up".
This means really big white (very unattractive) overalls, hair nets, saftey shoes and safety glasses.
Safety and quality is critical and I find these procedures really support that message, so I really don't mind doing it!
However some of the steps are a little cumbersome, and for wig wearers, they are also challenging.
Have you ever tried putting a hair net over a wig?
It is terribly difficicult, I keep thinking the elastic is going to tighten up and suck in my wig. What a sight that would be.
Also you have to tuck in all your hair, not so easy as wig hair does not bend and flow the same way as natural hair. It really is a jigsaw puzzle, done mostly without the aide of a mirror.
Then there are the safety glasses. Have you ever wondered where you put the glasses arms? Under the wig or on top of the wig? Then add another layer of a hair net. It becomes a nightmare!!!!
Where do the arms go?
So that was my alopecia challenge of the day. How to gown up without making it obvious that I am bald!!
Well I survived and who cares if they noticed. Its fun to be a bit quirky!
This means really big white (very unattractive) overalls, hair nets, saftey shoes and safety glasses.
Safety and quality is critical and I find these procedures really support that message, so I really don't mind doing it!
However some of the steps are a little cumbersome, and for wig wearers, they are also challenging.
Have you ever tried putting a hair net over a wig?
It is terribly difficicult, I keep thinking the elastic is going to tighten up and suck in my wig. What a sight that would be.
Also you have to tuck in all your hair, not so easy as wig hair does not bend and flow the same way as natural hair. It really is a jigsaw puzzle, done mostly without the aide of a mirror.
Then there are the safety glasses. Have you ever wondered where you put the glasses arms? Under the wig or on top of the wig? Then add another layer of a hair net. It becomes a nightmare!!!!
Where do the arms go?
So that was my alopecia challenge of the day. How to gown up without making it obvious that I am bald!!
Well I survived and who cares if they noticed. Its fun to be a bit quirky!
Ask a busy person
The quote from Benjamin Franklin rang true over the last few days.
"If you want something doing, ask a busy person"
You see over the last week I have had very little to do. Really, I have rarely been less busy.
My agenda consisted off, getting up, chosing what to have for breakfast, deciding which swimsuit or bikini to wear, chosing my sun bed, and deciding whether to have a swim or read my book first.
That is pretty much how the morning of the last seven days went. So packed agenda, errrr not really.
However you may have also noticed in the last week or so, my blog has been empty. No new posts, no new ideas and no BBB questions for reflection.
However today, I am back to reality and back to work with a day full on meetings and no breaks, however today is the day I am back to blogging. Finding the time to squeeze it in, when really there is very little space in the diary today at all.
It seems the busier we are, the better we manage our time. Busy people seem to understand the limited commodity of time and thus do not let a minute go to waste.
Do you agree with that? Are you a busy person?
Are you able to squeeze things in the busier you are?
Well I have to admit, I did enjoy the slothful nature of the last week of lounging and lazing.
But all good things come to an end, and now back to being busy.
Happy days!
"If you want something doing, ask a busy person"
You see over the last week I have had very little to do. Really, I have rarely been less busy.
My agenda consisted off, getting up, chosing what to have for breakfast, deciding which swimsuit or bikini to wear, chosing my sun bed, and deciding whether to have a swim or read my book first.
That is pretty much how the morning of the last seven days went. So packed agenda, errrr not really.
However you may have also noticed in the last week or so, my blog has been empty. No new posts, no new ideas and no BBB questions for reflection.
However today, I am back to reality and back to work with a day full on meetings and no breaks, however today is the day I am back to blogging. Finding the time to squeeze it in, when really there is very little space in the diary today at all.
It seems the busier we are, the better we manage our time. Busy people seem to understand the limited commodity of time and thus do not let a minute go to waste.
Do you agree with that? Are you a busy person?
Are you able to squeeze things in the busier you are?
Well I have to admit, I did enjoy the slothful nature of the last week of lounging and lazing.
But all good things come to an end, and now back to being busy.
Happy days!
Side effects
When talking over the new medication that was promised to be a miracle cure for aloepcia with a friend, she asked why I would not want to go on a clinical trial.
I listed the reasons I mentioned in an earlier post, but she did not accept this.
She said you need to understand exactly what the side effects. They can be so varied and may be very manageable
Just because a drug has side effects, it doesn't mean that you should rule it out.
Mmmmmmm.
My thinking was that I don't want to create health complications in my life, when they don't exist already today.
She then challenged me to find out more. Only then should I decide.
I love it when people challenge my thinking and open my mind up for new ideas.
I really had ruled out taking these JAK inhibitors without really understanding my decision.
So I committed to finding out more.
And when I do, you know you will hear first?
How do you make your decisions?
Like I do, based on gut, or are you rather the data gatherere? Or do you do something else?
Do tell..........
I listed the reasons I mentioned in an earlier post, but she did not accept this.
She said you need to understand exactly what the side effects. They can be so varied and may be very manageable
Just because a drug has side effects, it doesn't mean that you should rule it out.
Mmmmmmm.
My thinking was that I don't want to create health complications in my life, when they don't exist already today.
She then challenged me to find out more. Only then should I decide.
I love it when people challenge my thinking and open my mind up for new ideas.
I really had ruled out taking these JAK inhibitors without really understanding my decision.
So I committed to finding out more.
And when I do, you know you will hear first?
How do you make your decisions?
Like I do, based on gut, or are you rather the data gatherere? Or do you do something else?
Do tell..........
The repair of the world
Tikkum olam is Hebrew for healing or repairing the world.
And whilst speaking to a good colleague, she told me how she had come across these beautiful words whilst praying with her sister.
In our short exchange I learned about her religion and her beliefs and also that in Hebrew, God is not written in its fullest form, but G-d.
Bizarre as it may sounds, this reminded me of Harry Potter and the fact that noone says Voldemorts name out loud.
Anyway, here are the words she shared.
Tikkum olam
then you have found a piece of the world that G-d has left for you to complete.
But if you only see what is wrong and what is ugly in the world,
then it is you yourself that needs repair.
Hope you enjoyed this too.
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