im sorry I've not updated in ages. I'm still struggling with my Chiari. My neurosurgeon discharged me from his care but I'm still suffering. I'm planning on asking my GP for a referral to another doctor, maybe up in Liverpool. I get almost daily headaches and any form of straining makes my head bang.
I've still got issues regarding my mental health. Incase you missed it, I have been diagnosed as having schizophrenia. I am on a few medications to try and curb the voices, hallucinations, paranoia and dillusions. They are about 50% effective.
So say hi if you still pop on and read my blog. Love to you all!
This is a blog all about me. It started as a blog about my diagnoses and treatment of a rare condition called chiari malformation and my long recovery from the required brain surgery. It is now a blog about me, my life and things I enjoy! I accept products to review! Just use the contact me form on the right hand side. All reviews I do are my own opinions of the products
Wednesday, 6 July 2016
Wednesday, 31 December 2014
3.37am
So I drunk alcohol with caffeine in so gone 3am on New Year's Day and I'm still wide awake!
Happy new year to you all. Hope you managed to usher in the new year with minimal pain and to my usa friends I hope you enjoy the rest of 2014.
I'm happy as I get my cast off tomorrow....woooooo!
Thursday, 25 December 2014
Merry Christmas!
Happy Christmas to you all. I had a fantastic family day full of hecticness, laughter and love. It was perfect!
Thursday, 18 December 2014
1. Diagnosed when? March 30th 2010
2. Decompressed, if so when? July 29th 2011
3. Other additional conditions, if so which ones? Pernicious Anaemia, scoliosis and pressure issues
4. Have you personally met someone else with Chiari? Yep, about 20, maybe more
5. Most challenging symptom(s)? The headaches, they drive me nutty
6. Most embarrassing Chiari moment? Being shouted at in the street because someone thought I was drunk, I wasn't, I was just having a wobbly day.
7. Biggest Chiari frustratsions(s)? Struggling with uni work as my brain is so fuzzy
8. Number of medications in your personal medicine cabinet? 8, all different painkillers, antidepressants and antipsychotics
9. Number of Doctors/Therapists stored in your phone? 3, my GP, neurosurgeon and my psychiatrist
10. Do you attend Dr appointments solo or with support? I used to go alone, but recently I have been taking a friend or a family member
11. Biggest regret that Chiari has created? I try not to have regrets, so I am oky with everything
12. Biggest lesson that Chiari has taught? To never take health for granted, I was young ad foolish when I was diagnosed, I feel I have grown up a lot since diagnoses
13. Favorite non-medicinal therapy? I discovered acupuncture recently as I had whiplash and loved it!
14. Worst medicinal side effect? Fuzzy headedness which makes my thinking much slower than I am use to
15. Biggest change in your life since diagnosis? I quit my job and went back to university!
16. Worst medical test? I HATE lumbar punctures, I've had about 20 and have so much scar tissue there that when they put the needle in it hurts and it gets worse each time.
17. Hardest thing to give up because of Chiari? Working
18. Have you become more or less religious since diagnosis? I am a total atheist and that hash\t changed since I was diagnoses
19. Where do you find enjoyment now, that you didn't before? In simple things such as baking, crafting and also just spending time with the family and my friends. I enjoy it much more now.
20. Favorite Chiari websites?I don't have one
2. Decompressed, if so when? July 29th 2011
3. Other additional conditions, if so which ones? Pernicious Anaemia, scoliosis and pressure issues
4. Have you personally met someone else with Chiari? Yep, about 20, maybe more
5. Most challenging symptom(s)? The headaches, they drive me nutty
6. Most embarrassing Chiari moment? Being shouted at in the street because someone thought I was drunk, I wasn't, I was just having a wobbly day.
7. Biggest Chiari frustratsions(s)? Struggling with uni work as my brain is so fuzzy
8. Number of medications in your personal medicine cabinet? 8, all different painkillers, antidepressants and antipsychotics
9. Number of Doctors/Therapists stored in your phone? 3, my GP, neurosurgeon and my psychiatrist
10. Do you attend Dr appointments solo or with support? I used to go alone, but recently I have been taking a friend or a family member
11. Biggest regret that Chiari has created? I try not to have regrets, so I am oky with everything
12. Biggest lesson that Chiari has taught? To never take health for granted, I was young ad foolish when I was diagnosed, I feel I have grown up a lot since diagnoses
13. Favorite non-medicinal therapy? I discovered acupuncture recently as I had whiplash and loved it!
14. Worst medicinal side effect? Fuzzy headedness which makes my thinking much slower than I am use to
15. Biggest change in your life since diagnosis? I quit my job and went back to university!
16. Worst medical test? I HATE lumbar punctures, I've had about 20 and have so much scar tissue there that when they put the needle in it hurts and it gets worse each time.
17. Hardest thing to give up because of Chiari? Working
18. Have you become more or less religious since diagnosis? I am a total atheist and that hash\t changed since I was diagnoses
19. Where do you find enjoyment now, that you didn't before? In simple things such as baking, crafting and also just spending time with the family and my friends. I enjoy it much more now.
20. Favorite Chiari websites?I don't have one
So I'm still in this flipping plaster cast on my right arm. I swear it shouldn't be this sore after so many weeks. I am not getting it off till January 2nd, which is annoying.
My chiari has been playing up, headaches are pretty bad.
My schizoaffective disorder is still troubling but I am going up on my meds so that might help.
I am excited for christmas, Jacob (my 5 year old brother) is really excited which makes me excited.
Anyway, a merry, painfree christmas and a happy new year, I will see you next year!
My chiari has been playing up, headaches are pretty bad.
My schizoaffective disorder is still troubling but I am going up on my meds so that might help.
I am excited for christmas, Jacob (my 5 year old brother) is really excited which makes me excited.
Anyway, a merry, painfree christmas and a happy new year, I will see you next year!
Sunday, 30 November 2014
Monday, 24 November 2014
Clumsy
If I was one of the 7 dwarfs, I would be clumsy.
So last week I was getting out of bed, and due to my chiari sense of balance I over balanced and smacked my arm on a bedside cabinet. It hurt but I've had worse. I continued to do my thing for the next few days until it became more than just a bumped arm. 4 days after the accident I decided to get it checked out.
And, of course, I have broken my wrist. I am now in an arm cast, including my thumb. It is rather annoying as you can well imagine. So my plans for neck piercings didn't come into fruition. I am hoping to get them done this side of christmas but it may have to wait until the new year now =[
So last week I was getting out of bed, and due to my chiari sense of balance I over balanced and smacked my arm on a bedside cabinet. It hurt but I've had worse. I continued to do my thing for the next few days until it became more than just a bumped arm. 4 days after the accident I decided to get it checked out.
And, of course, I have broken my wrist. I am now in an arm cast, including my thumb. It is rather annoying as you can well imagine. So my plans for neck piercings didn't come into fruition. I am hoping to get them done this side of christmas but it may have to wait until the new year now =[
Tuesday, 18 November 2014
Pain!
So, I think I'm mad. I enjoy pain! I love getting pierced or tatted.
Today I am planning on getting 2 microdermals implanted in my neck. It'll look much like this! 
It'll be below my chiari scar so will be fine. I'm hoping to have my friend videoing it, if they allow it. Some placesa are funny about photos and videos being taken.
Saturday, 1 November 2014
Piercing pain list
So this is going to be a list of ear piercings ordered from most painful to least painful!
Left ear. Forward helix X3 and tragus.
Right ear. Anti-tragus, daith and conch.
1. Anti-tragus, made my eyes water and my toes curl. So painful and also most painful whilst healing.
2. Conch, they had to use a lot of force to get it through which hurt like hell. Healed really well however.
3. Daith, went through in two stages so was quite painful. Slow to heal.
4. Tragus, went through well and healed well.
5. Stretched lobes. Hurt a fair bit in the smaller sizes. Bled a little. No longer wear this jewellery.
6. Forward helix, bottom piercing. Hurt a little. Had all three forward helix done at the same time.
7. Forward helix, middle piercing. Just a pinch.
8. Forward helix, top piercing in line with my eye. Didn't even feel it.
9. Second lobes. Accidentally went through cartilage on one lobe so hurt a little. No longer wear this jewellery.
10. Lobes. Didn't hurt at all. No longer wear this jewellery.
Wednesday, 22 October 2014
Depression Poem
"Yesterday, I spent 60 dollars on groceries,
took the bus home,
carried both bags with two good arms back to my studio apartment
and cooked myself dinner.
You and I may have different definitions of a good day.
This week, I paid my rent and my credit card bill,
worked 60 hours between my two jobs,
only saw the sun on my cigarette breaks
and slept like a rock.
Flossed in the morning,
locked my door,
and remembered to buy eggs.
My mother is proud of me.
It is not the kind of pride she brags about at the golf course.
She doesn’t combat topics like, ”My daughter got into Yale”
with, “Oh yeah, my daughter remembered to buy eggs”
But she is proud.
See, she remembers what came before this.
The weeks where I forgot how to use my muscles,
how I would stay as silent as a thick fog for weeks.
She thought each phone call from an unknown number was the notice of my suicide.
These were the bad days.
My life was a gift that I wanted to return.
My head was a house of leaking faucets and burnt-out lightbulbs.
Depression, is a good lover.
So attentive; has this innate way of making everything about you.
And it is easy to forget that your bedroom is not the world,
That the dark shadows your pain casts is not mood-lighting.
It is easier to stay in this abusive relationship than fix the problems it has created.
Today, I slept in until 10,
cleaned every dish I own,
fought with the bank,
took care of paperwork.
You and I might have different definitions of adulthood.
I don’t work for salary, I didn’t graduate from college,
but I don’t speak for others anymore,
and I don’t regret anything I can’t genuinely apologize for.
And my mother is proud of me.
I burned down a house of depression,
I painted over murals of greyscale,
and it was hard to rewrite my life into one I wanted to live
But today, I want to live.
I didn’t salivate over sharp knives,
or envy the boy who tossed himself off the Brooklyn bridge.
I just cleaned my bathroom,
did the laundry,
called my brother.
Told him, “it was a good day.”
—Kait Rokowski (A Good Day)
took the bus home,
carried both bags with two good arms back to my studio apartment
and cooked myself dinner.
You and I may have different definitions of a good day.
This week, I paid my rent and my credit card bill,
worked 60 hours between my two jobs,
only saw the sun on my cigarette breaks
and slept like a rock.
Flossed in the morning,
locked my door,
and remembered to buy eggs.
My mother is proud of me.
It is not the kind of pride she brags about at the golf course.
She doesn’t combat topics like, ”My daughter got into Yale”
with, “Oh yeah, my daughter remembered to buy eggs”
But she is proud.
See, she remembers what came before this.
The weeks where I forgot how to use my muscles,
how I would stay as silent as a thick fog for weeks.
She thought each phone call from an unknown number was the notice of my suicide.
These were the bad days.
My life was a gift that I wanted to return.
My head was a house of leaking faucets and burnt-out lightbulbs.
Depression, is a good lover.
So attentive; has this innate way of making everything about you.
And it is easy to forget that your bedroom is not the world,
That the dark shadows your pain casts is not mood-lighting.
It is easier to stay in this abusive relationship than fix the problems it has created.
Today, I slept in until 10,
cleaned every dish I own,
fought with the bank,
took care of paperwork.
You and I might have different definitions of adulthood.
I don’t work for salary, I didn’t graduate from college,
but I don’t speak for others anymore,
and I don’t regret anything I can’t genuinely apologize for.
And my mother is proud of me.
I burned down a house of depression,
I painted over murals of greyscale,
and it was hard to rewrite my life into one I wanted to live
But today, I want to live.
I didn’t salivate over sharp knives,
or envy the boy who tossed himself off the Brooklyn bridge.
I just cleaned my bathroom,
did the laundry,
called my brother.
Told him, “it was a good day.”
—Kait Rokowski (A Good Day)
Saturday, 11 October 2014
Positive Post
So, this is, for once, a post without my usual moaning about pain or anything. Whilst they are still there I am choosing to ignore it.
I am lucky enough to be given the opportunity to go to Kenya, in Africa, next year. This trip will involve teaching the children, helping the teachers that live over there and generally making it a better place for the children. Many of the children would not be fead if it wasn't for the school, they also have suffered through lots of hardship. Many are orphaned or affected by HIV or aids. They live in slums and go through rubbish dumps and bins looking for food.
What I want to do is take over a suitcase full of items, such as books and pencils, that the schools may not already have. To do this I need to raise money. So I have set up a donation page and am hoping the chiari community dig deep and help me reach my target.
My fundraising page is gofund.me/fph81w please consider donating, I know how much of a difference this could make to children. I promise to post photos of the children looking joyful upon my return so you can see what your donation has done for them!!
I am lucky enough to be given the opportunity to go to Kenya, in Africa, next year. This trip will involve teaching the children, helping the teachers that live over there and generally making it a better place for the children. Many of the children would not be fead if it wasn't for the school, they also have suffered through lots of hardship. Many are orphaned or affected by HIV or aids. They live in slums and go through rubbish dumps and bins looking for food.
What I want to do is take over a suitcase full of items, such as books and pencils, that the schools may not already have. To do this I need to raise money. So I have set up a donation page and am hoping the chiari community dig deep and help me reach my target.
My fundraising page is gofund.me/fph81w please consider donating, I know how much of a difference this could make to children. I promise to post photos of the children looking joyful upon my return so you can see what your donation has done for them!!
Sunday, 21 September 2014
Sorry for the delay
So I've been out of hospital for a while. I'm now on a toxic antipsychotic which means I've gotta have blood tests every Monday. But of a pain in the arse. The meds are not fully working but they're slowly being upped so hoping to get to a therapeutic dose soon!
Chiari wise, I've got a bad cough at the moment and it's giving me bad Chiari headaches.
Other than that life is going good!
Monday, 11 August 2014
Back again
So after a rough few days I've found myself back on PICU. A different one to last time but they're all the same really. Hoping my mental health improves enough to let me go home very soon!
Monday, 14 July 2014
Seen the brain dude
Today I saw my neurosurgeon. He wants me to have another MRI scan and then start from scratch in his investigations/ So that means possibly another ICP bolt. Rubbish!
Seeing my Neurosurgeon
I am seeing my neurosurgeon today. Hoping he will offer me something that will help. Whilst my chiari has been put on the back burner since all the mental health stuff happened, I am still struggling everyday with head, neck, back and shoulder pain. Hoping for some kind of relief!
Monday, 23 June 2014
Time to be honest.
So as most of you will know I recently spent 11 weeks in a psychiatric hospital. Almost all of you will not know why, other than what I've shared on here.
Truth is I've been diagnosed as having a schizophrenic type condition. I know that's a scary word but to me it's a relief. I am not one to hide or be embarrassed by my conditions. Any questions no matter how small comment on this or send me a message using the box on the right!
Tuesday, 20 May 2014
Freedom!
I am finally free, having been discharged today. I'm having lots of community support but after eleven and a half weeks I am no longer a hospital inpatient. Eleven weeks, three hospitals, 7.5 weeks in intensive care, two comas, ten different medications and lots of support later and I'm hoping to stay out of hospital for good! I want to thank everyone who has contacted me using the little form to the right and sent messages of support it means a lot. I'll keep the updates coming as I adjust to life outside of a locked ward!
Friday, 16 May 2014
Home for a while
So I am home until Monday. Currently lounging in my bed and loving it. Should be discharged next week.
Sunday, 11 May 2014
Where do I start?
So things are going oky here. I am still in hospital, ten weeks today! Am now in my 4th hospital and hoping this one will be my last, as I am inching closer towards coming home. Am out of intensive care and now only a 20min drive from home!!!! Should be out of here very soon! Keep everything crossed. Will update again next week or when I'm home, which ever is sooner!
Thursday, 20 March 2014
They've fixed me.......I wish
These posts are getting harder to write as I'm drugged up on lots of different meds and the new ones make focusing hard.
Managed to avoid being restrained last night which is progress.
Still sleeping on a plastic mattress with no sheets. Annoying!
Tried to ligature without success the night before last.
We've just had the compulsory morning meeting and quiz which I won again!
Have a few manic people in so it's super loud so I'm hiding away in my room. Only get my phone for 30 mins twice a day so can't write blog posts like I'd hope to. Keeping track and will blog properly one home!
Love and craziness to you all. X
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