kintsugi scar

I have been trying to help myself with my depression. I decided to try and really focus on the positive things in my life. celebrating the small successes and things that are going well.

Then I got to thinking of my scars, I'm not ashamed of my scars they are my battle scars, and show the battles I have been through and represent what I have become. 

I have not always had this relationship with my scars on my wedding day, I used makeup to cover up my scars on my wrist. I was current at surgery 2 out of 4 and desperately unhappy. This was because a few months before I had had to leave my job as a technology teacher. I could no longer do the demonstrations that I needed to do to be able to teach my students. This made me very angry and upset and I didn't want to be reminded of this in all my wedding pictures for the rest of my life. 

Now 4 surgeries on my wrist with more scars and still constant pain in it that gets worse when I use it. I have excepted they are apart of me and my journey, much like the rest of my scars over my body. I got my first when I was 4 a surgery on my neck to remove a sinus. This scar would get red and inflamed when I was unwell so I grew up very aware of it and it took years for me to accept it as a part of me. 

All this contemplation got me thinking about how to be more positive about my scars and I remembered how the Japanese treat a broken plate or bowl. Were we throw away a broken plate (labelled as broken and useless) or try to fix it but use super glue of other materials (trying to hide the break). The Chinese repair with gold, silver, or platinum to repair theirs they want the break to become apart of the beauty of the piece.

Wanting to find out more I decided to do some research and found out what the technique is called and how it all started. below is the history.

Translated to “golden joinery,” Kintsugi (or Kintsukuroi, which means “golden repair”) is the centuries-old Japanese art of fixing broken pottery with a special lacquer dusted with powdered gold, silver, or platinum. Beautiful seams of gold glint in the cracks of ceramic ware, giving a unique appearance to the piece.

This repair method celebrates each artifact’s unique history by emphasizing its fractures and breaks instead of hiding or disguising them. Kintsugi often makes the repaired piece even more beautiful than the original, revitalizing it with new life.

History

Kintsugi art dates back to the late 15th century. According to legend, the craft commenced when Japanese shogun Ashikaga Yoshimasa sent a cracked chawan—or  tea bowl—back to China to undergo repairs. Upon its return, Yoshimasa was displeased to find that it had been mended with unsightly metal staples. This motivated contemporary craftsmen to find an alternative, aesthetically pleasing method of repair, and Kintsugi was born.

Since its conception, Kintsugi has been heavily influenced by prevalent philosophical ideas. Namely, the practice is related to the Japanese philosophy of wabi-sabi, which calls for seeing beauty in the flawed or imperfect. The repair method was also born from the Japanese feeling of mottainai, which expresses regret when something is wasted, as well as mushin, the acceptance of change

please check the link below for more information about Kintsugi 

https://mymodernmet.com/kintsugi-kintsukuroi/

So I decided to paint my scars gold to celebrate the journey I have been on and the new me that they have created. I may still be fighting multiple illnesses but these scars are reminders of the warrior I have become due to each of these fights. They make me more unique and I except the change that my body has gone through for me to be who I am now.

4 x wrist surgeries, 1 suspicious mole removal, & sinus removed from my neck

3 X endometriosis removal & appendetomy, 1 hernia repair.

 

 2 X foot surgery to correct Hammer toes/clawing of toes 

I am hoping to raise awareness and start a challenge to paint your scars gold or silver and share on social media to help raise awareness for body positivity and being proud of our journeys and fights through challenges of illnesses. please check out my Instagram for more information link below.

https://www.instagram.com/endo.adeno_warrior/

Menopause

On the 6th February, I booked to see my consultant, yet again I paid to see him privately as NHS I was still waiting for my diagnostic lap never mind a follow-up appointment to get any medication to help in the meantime.

At this time I was currently not on any hormones due to the fact that when I last saw them I was being investigated for possible progesterone allergy.  They diagnosed me as having chronic spontaneous urticaria in August of 2018. This meant that while I could have progesterone medication it was still best to avoid the menopause injections. This was due to the fact that if it caused stress in my body that could set off an allergic reaction they can't stop the medication as it lasts a month, and this could be very dangerous.

When I saw my consultant he said while this made it more challenging as the injections would be more suited to treat me the risks were too high. He did have an idea and suggested I try Provera tablets to stop my periods and give me menopause type effect. The tablets are the same active ingredient that is in depo-provera. He suggested I started with 30mg taken 10mg 3 times a day, and that the dose can be increased by 10mg a time until the medication stops my periods. However, he did warn me the higher the dose the worse the side effects would be.

I started on 10mg 3 times a day (30mg total) within the first week I was feeling nauseous. within 3 weeks I was getting hot flushes and headaches.

By week 7 I started to spotting I spoke with my GP who upped my dose to 40mg a day.  My pain was still really bad, and I had thought because I didn't have my normal period 3 weeks ago that the meds were working but they weren't.

Starting to take the 40mg had an impact straight away the hot flushes got more intense and I was getting night sweats, the headaches were worse and nausea had also given me vomiting I was bleeding more and more and it was beginning to set off my urticaria. This was because as well as Endo/Adeno flare ups I was bleeding more and having all the side effects of the menopause. My body was under so much stress I couldn't stop the reaction and had to take steroids for longer than usual for one of my reactions.

A few days later My period started (well I think it was a period I was bleeding more than previously but still not as much as a normal period for me) and I emotionally I was struggling with how unwell I was feeling. I went back to my GP, he upped my dose of Provera to 50mg a day and put me on antidepressants. I was struggling as dealing with all the issues I was before, plus the menopause side effects and urticaria reactions. This medication was meant to be making me feel better but instead, I felt a lot worse than before. I was struggling to look after my children and felt like my body was failing on me. I didn't want to live in this body anymore, I was only still here because I couldn't bare to leave my children without a mum.

The days that followed got worse with every day that went past. I was being sick 3 or more times a day, barely eating anything at all, and losing weight. Yet still my stomach was swollen and I looked pregnant. This was such a hard time and on the 17th April, I saw my consultant again privately to talk through my diagnostic lap (from 1st March) and discuss the options for hysterectomy. He agreed I could have it done and would try and keep my ovaries. He would also remove endometriosis at the same time. He gave me all the information for getting this started and I'm now waiting for a date for this.

I also spoke with him about the Provera as I was still bleeding (more days than before taking it) and having urticaria reactions. He agreed that if at 50mg things were getting worse not better than its likely higher dose would most likely not help either. He advised me to stop taking this straight away.

It took 2 weeks for me to start feeling better from taking Provera. My endo\adeno symptoms never improved while on it. I still don't have much of an appetite and I still have some of the side effects. For me, I have run out of options for hormone treatment as this was the last thing he could think of to try, my urticaria means my options for treatments are restricted. I'm hoping a hysterectomy will reduce my symptoms enough that I will be able to get some quality of life back.

Overall, I don't think I have gained much from my time on the menopause. I felt worse (and still slightly affected by this) and it didn't improve my endo/adeno at all. So I feel like I lost months of my time as I couldn't do anything. it makes me realise more and more that they need to try and find a better way to treat this awful illness, rather than just giving us a paster for a massive wound. They also need to realise that every woman is different and what works for one woman will not work for every woman. Especially when they have other illnesses that make it more complicated.

left to wait

I have been waiting a long time to find out where my endo has spread to. Referred to the consultant in December 2016, I didn't see the main consultant until I paid to see him in March 2018 after I had only seen his registrar who disregarded what I said and said unless I had tried Mirena coil again and the menopause injection he wouldn't do surgery.

I was told in March they would put me on the waitlist for a diagnostic lap to see where the endo has spread too. in July I saw my consultant again and got MRI results and he confirmed I was on waitlist. but would stay at the top of the waitlist until My allergy specialist gave me the all clear. In December they still hadn't heard from my allergy specialist who was meant to write in August and again in September. January I got a copy of this letter and sent it to my gynae consultant. he then sent me a letter to say how they had heard from my allergy specialist they would put me back on the waitlist.

I hit the roof back on the wait list you mean I wasn't already on the list. I spend hours calling various people in the hospital for the next month. End of January I had, had enough not treatment or surgery and had been waiting for the last 2 years for any help. I paid to see my consultant privately again and he said I could have a drug called Provera, because the allergy clinic had tested me with this med and it is the same drug that's in the injections. so should do the same thing and put me through menopause but I have to take drugs 3 times a day.

My consultant confirmed that while he requested I go on the waitlist and stay at the top until they hear from my allergy specialist they didn't do this. He said if your at risk of going over the government guidelines while awaiting tests of any sort they take you off the waitlist and put you back on the list when they have results. the issue with this you don't go back to where you would have been on the list you go to the bottom. for me and my local hospital diagnostic waitlist is about 7 to 8 months. I had waited
15months from the first referral to get put on the list. dec2016-march2018
10months from being put on the list to allergy specialist writing to the consultant.
then I was looking at potentially a further 8 months.

I got very upset and kept chasing every person I spoke to gave me a different answer and different expectations of when I would eventually get a date. I knew there had been other patients who had not waited as long at all same doctor same hospital. One lady had been seen by consultant end of Dec and surgery mid-JanJan less than a month wait. because she was marked as an emergency.

I explained that I have allergic reactions to whenever my body is under stress and that every month my endo gets worse and my reactions are getting worse. with every ovulation and period, I have reactions. they can sometimes be so bad they affect my breathing and I end up in Resus having adrenaline this can be very dangerous, what part of that is not emergency, my endo could kill me if it causes an allergic reaction they can't stop.

Next couple of weeks I felt like I was talking to brick walls then suddenly I get a call they have a date in less than 2 weeks time. I couldn't believe almost a year of waiting I will know how bad it is and then they can plan the treatment operation. I have only 2 days too wait then its big op day. its finally feeling real and im getting nervous about knowing the true extent of my illness.

poetry part two

The first poem was written in the middle of the night when I couldn't sleep. To quiet my overreactive mind I put it into a poem. I find creativity really helps me deal with the emotional aspects of my life.

Insomnia Cave

I lay in be darkness all around me.
I close my eyes and take a deep breath.
tonight I will sleep!
As my eyes get heavy I hear a sound.
The sound I dread the most
What if!
No, No, deep breath and calming thoughts.
What if, what if!
It's getting louder......
No, no, no go away.
Go away I don't want you here,
you're not welcome anymore.
but the more I try to sleep the louder the sound.
What if, what if, WHAT IF! it shouts.....
I want to think of happy thoughts,
of hanging out with family and friends.
I visualise the happy times in front of my eyes.
I'm snatched and pulled into the dark.
What if, what if, WHAT IF it shouts.....
suddenly I'm surrounded by thoughts so negative
so negative I want to cry
but all I hear is What if@
wish there was an off switch
to make it go away
wheres my knight in shining armour to rescue me
nowhere as I'm not asleep it's only me I fear
fight as I may I cannot escape
I need to wake to escape, I'm not yet asleep
all I hear is what if, what if!
and now I'm laying here wide awake
in tears and thinking to myself.......
WHAT IF!
(Hollie Allen 11/11/2018)


This next poem is about how I often feel like I wear a mask to cover up how I truly feel.  I think people with chronic illnesses get so good at wearing a mask that others don't often notice that they are even doing it.

Underneath
I wear a mask most every day.
well, sometimes two or more.
you see this smile it's not real
its the mask I wear the most.
but its fakeness rubs off on me
and so in time, my words become fake.
I'm okay, I'm fine, I'm alright.
all fake like this smile you see.

I need to be honest but I cant
I fear no one will understand
so I keep wearing my masks
to hide the world from true me
sometimes the mask slips and falls
to reveal the face underneath
for underneath is still more lies
this is why I wear more than one
to protect the world from the underneath.

For underneath this smile is my okay face
it's not happy or sad it just says urgh
most people struggle when this is seen
they don't know what to say
so awkwardly say it's not that bad,
think positivity.

But the truth is it gets darker underneath it all
for hidden next is sadness
this sad face shows a bit more truth
but still more hidden underneath.
the sad mask makes others uncomfortable
for that, I cannot help
it's only a small piece of the truth hidden underneath
most people just look and stair
maybe whisper of what they see
for they do not understand
the pain inside me

but if its bad and this mask slips
the truth from inside shows upon my face
I no longer have a place to hide
I try to be strong and show the truth
but no one knows what to do
with the depression found underneath
the lies of disguise just can't hide

just ask me how I am? I feel
but you're too scared of me
what is it of my truth that upsets you so
is it the fact I'm not happy
in distress, now my masks have gone
please just ask me how I am
learn more, or offer me support
then I might not need my masks to wear joy.
(Hollie Allen 01/01/2019)

This poem I wrote when I was struggling with my illnesses and feeling very overwhelmed by my life. I felt alone but wanted to process this into something creative.

Waves

I'm surrounded by darkness,
I'm all alone......
But I'm not alone
I'm surrounded by water.
So much, it tries to pull me down
Every day I fight,
I fight to just stay afloat.
I keep trying to stay above the waves

But the more I fight the more tired I get
I don't know how to stay
How to stay afloat and not give in.
As time passes by the harder it gets
It's not getting easier
As I sink beneath the waves
For a moment I wonder....
should I just let go

Should I let this darkness win.
The light in the distance is fading away.
No, no, I tell my self.
even though it's hard don't give in
I fight to reach the surface
but the seaweed grabs my legs
When will I get a break, I want to win.

I manage to break free and reach the surface
With one big gasp of air, .....
it's not over yet.
But still more, the darkness throws more at me
My situation just gets worse
It's getting colder and the winds getting strong
The waves just get bigger and bigger
It's like it's trying to take me down.
My fight just gets harder

I feel it's unfair while others walk on dry ground
I stay here trying to just stay afloat
Just trying to survive.
A boat passes by
Can they see me?
I try to wave..... scream and shout
But I sink underneath
They can't see me......

As I return to the surface
It just passes by
Now I'm all alone again in the darkness
Should I give in it's been a long fight
But I'm so much stronger than this
It will not be my end

I have to fight on to warn others
So no one else has this fight
So fight I will, I'll scream and shout
And soon I will get heard
And when I do I realise
I'm not alone at all
There are others here I'm not alone

Maybe together we will be heard
With new found strength I shout and fight
And with every voice I hear
The struggle just gets easier knowing your about
I'm not alone
I can go on

This is not how my story ends
For I'm a chapter in a much bigger book
The book of all of us
Together were all the story
and our voices will be heard!
(Hollie Allen 02/01/2019)

Welcome 2019 review of 2018

2018 was a rough year for me, I had multiple stays in the hospital and my health got worse and worse. The positive I guess was getting the diagnosis of 2 conditions.

At the start of 2018, I was struggling with the coil that was fitted in November 2017. I had been heavily bleeding since it was fitted, and having allergic reactions every two weeks. I made the decision to remove my Mirena coil in February. I thought this would help it stopped the constant heavy bleeding but nothing else.

In March I had my appointment with my gynae consultant put back again with flare-ups that were getting worse and worse with every month that went past and the allergic reactions still happening I decided I had to see the Head consultant in my area for endometriosis. I paid £150 to see him privately for about 15 minutes consultation. But it was worth it, he agreed my condition was very bad and I needed a diagnostic lap before removal of endometriosis. He also wanted to do an MRI to also give a better look. He wrote to my hospital to recommend this and I was put on the waiting list for both surgery and MRI.

In May I had pain that was getting worse and worse. I went to see my doctor who referred me for blood tests. But a few days later I woke up on a Monday and was in really bad pain My period was also 5 days late. I went to my doctor again who phoned the hospital and booked me to go to the surgical assessment unit. They were worried about it possibly being an ectopic pregnancy. blood tests came back and it wasn't a pregnancy but possibly linked to my endometriosis, so I got sent to the gynae ward. They gave me painkillers and requested ultrasound and MRI. That night I got worse, I was light headed and dizzy, they checked my blood pressure it had dropped to 80/50 they all started to panic and called the on-call doctor. it took 3 litres of fluids to bring my blood pressure back up to what is normal for me. I often have a lower range blood pressure 100/70 to 110/80.
On Tuesday I had my ultrasound they said it didn't show much just some endometriosis on my right ovary. I stayed in the hospital as even though I was on a lot of Morphine I was still in a lot of pain. They kept chasing my MRI referral, but still nothing.
Wednesday I was still in a lot of pain, they requested a pharmacy specialist to come and talk to me about painkillers. In the afternoon my gynae consultant came up to see me. He wasn't working that ward but he had been contacted re-treatment plan so knew I was in and came to check on me. This was amazing, he talked me through what had happened apparently the ultrasound had shown a large burst cyst and a lot of free blood in my abdomen. I was shocked as they had told me nothing was wrong, but this explained the amount of pain and my blood pressure dropping so much. He talked me through future options but said hopefully the MRI will give more results to make a more informed choice.
Thursday I managed to get my MRI and then reviewed by a pharmacist. they decided to try Oxycodone and see if it helped. It helped more than morphine but I still had a lot of pain. The doctors came to talk to me and said I was a bit of a problem and hard to treat (due to my other health conditions) and was making their jobs more difficult. I was discussed and so unhappy by this comment, I can't help my health conditions a would certainly pick an easier option if I could.
Friday they said they had my MRI results that showed Endometriosis but not too bad and that was it. they said they would discharge me and I should see my consultant for further treatment. When the nurse gave me my discharge papers it showed I had a lot more than just some Endometriosis. My womb was stuck to the peritoneum layer, the right ovary is attached to the back of my womb, the womb is attached to bowel and other pelvic areas, and I have adenomyosis. I cried What an incompassionate way to get a diagnosis. I was sent home with oxycodone and bed rest. I also had low iron and had to take iron tablets, it took me months to recover from this.

June I ended up have a very bad allergic reaction that started with a rash and progressed to affect my breathing. First I was given antihistamines, and steroids but my breathing got worse. I ended up needing to go to Resus where I need adrenaline to get the reaction under control. 

In July I got to see my consultant again and he said I still needed a diagnostic lap first to see how badly the bowel is affected and where else the endometriosis is as MRI didn't show endo on bladder but he thinks it probably is on there too. He also said I had quite a few cysts on my ovary they are small at the moment ranging between 1 and 2cm. He agreed that a hysterectomy would help with the Adenomyosis, but wants to try a keep my ovaries if possible.

Then in September I finally had my allergy testing. I got diagnosed with "Chronic spontaneous Urticaria". They explained that my body produces too much histamine whenever my body is under physical and emotional stress. I got put on 2 different medications to try and keep the reactions at bay, and extra meds for when I have a reaction.

My endo pain has been getting worse and worse, with more and more pain. In October I started to get pain just under my ribs but inside, not muscular. My GP thought it may have been my Liver or gallblader as on examination thats what it showed. He referred me for an ultrasound and in November they checked everything liver kidneys, gallbladder and stomach. They said its probably very likely that I have Endometriosis in this area.

Ending the year I have pain when I eat unless its a small meal. I Have pain every day that gets worse the more I do. I am still having regular urticaria attacks but the serverity is less. Having been put on the wait list for a diagnostic lap In March I am still waiting for this op. It's frustrating it took 17months to get put on the list, now over 9 months and still no lap, and I know that the wait list for hysterectomy is over a year. which I won't get put on until I have the diagnostic op. It's looking more and more like I'm not getting hysterectomy and endometriosis removal until some time in mid to end of 2020 maybe even 2021. I'm really struggling with the idea of being left to suffer for the next year or 2, with no relief at all.

2018 was a hard year and as I see everyone writing about that this year is going to be the best year ever, I struggle because on the 1st of January I felt very unwell and had pain in my breast. I went to my doctor on the 2nd and was told I have mastitis. I'm not breastfeeding but I have suspected high prolactin. I still have milk even though I stopped feeding my daughter 11months ago. The doctor put me on 2 different types of antibiotics, one is a very strong one and has made me feel quite unwell, so even though the antibiotics are helping the infection I still don't feel much better. This was not the start to the new year I was expecting and I hope it's not a sign of things to come. Hoping you all have a happy and healthy 2019.