The Bucket List Project; Haunted Tour Calgary and Banff

IMG_4626

For many years I have wanted to lead my own haunted tour. Due to declining health I have put this on the back burner. I may not be able to go everywhere I have wanted to go, but I was able to get to see some of the haunted places in Alberta. These may only be the tip of the iceberg, but I am proud of myself for being able to accomplish what I did.

While being in Alberta I really wanted to do this but didn’t have to means of transportation. My husband came for a visit and offered to drive us around the city.  Over the course of a few days I was able to get all the photos I could of the outside of haunted attractions.

This was a trying challenge. It is still a project that is in the works. I will do my best to finish this, I know it will take many years of planning and saving my spoons to do so. Energy is something that seems to fade easier and quicker these days. Pain is an unwanted friend, and with me day in and day out. Pain and low energy make life a challenge, I won’t let it stop me from enjoying the simple things in life when I can

I am happy to announce that having some every I able to do a haunted Calgary and a haunted Banff tour. I am forever grateful and appreciative to the people whom helped me to accomplish this huge feat. I am truly blessed with people that understand and are willing to help me. I can cross off my list being a haunted tour guide!

Due to brain fog that is worsening I took photos of my tour to remember my tour. I used a program to create comics for the purpose of a virtual tour. Please bare with my spelling and grammar. Enjoy my little tour through haunted Banff and Calgary. I hope you enjoy my comics! You can also find my YouTube video of these here on my YouTube channel https://www.youtube.com/watch?edit=vd&v=qX6YNQA5pyk

imageimageimageimageimageimageimageimageimageimageimage

Steph May Heads POEM “The Monster In The Mirror”

IMG_4586

THE MONSTER IN THE MIRROR 

By Stephanie May Heads

She won’t shut up
Won’t leave me alone
She won’t stop
Till I’m skin and bone

Just how we wana be
But not rationally
Breaking mirrors is a dream of mine can’t make it reality

Like a constant loop of music
Repeating in my ears
Bullying me, bruising me
For many of my years

Cutting at me, picking at me
Pulling at my hair
Laughing at my make up
U won’t wear it bitch, don’t dare!

Stop eating u don’t deserve it!
Go on, ram it down your throat!
You make vomit, make me sick
Look at you , you’re a joke!

Buy the clothes, don’t buy them
Get a bigger size
Cut things off, bleach them twice
I wana pull out both my eyes.

However much I lose
It won’t ever be enough
The mirror cries at me
And I stand there feeling crushed.

Who is it that is lying?
I can see it all looks vile
Like a candle face, melting,
Dripping down like Dahli’s style.

I hate her, I detest her
Her feelings are the same
All our insecurities
It is us she always blames.

The one thing that I did
That helped me to stay sane
You took it all away from me
And so you won again.

Nothing of me works right
Neither body nor my mind
In a way I can’t believe my eyes
This illness makes me blind.

To me it’s very true
it’s my reality
To me, self loathing and being ashamed
Is my speciality.

I wish I wasn’t like this
Wish I was beautiful
Attractive and confident
It would be wonderful.

Dysmorphia, anxiety,
Depression, BPD.
All these illnesses and sadness
They’re us, they’re you and me.

Check out Steph May Heads other posts here on her page https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

You Are Sick After All…

IMG_4524When people hear that you’re sick the assumption start flowing in.

“Oh you can do art so that means that you can work.”

“You seemed fine when I see you so you can’t be that sick.”

“You don’t wear your braces out all of the time so your joints aren’t that bad.”

There are countless things that people say to you when you are dealing with chronic illness and they are still healthy. People mean well and are unsure of what to say to someone who is chronically ill.

People form their own opinions. Whether these people are older than us or younger than us or the same ages us. Sometimes ignorance seems to be the only thing that people can relate to. Being ignorant about my illness is not going to help me. It all comes down to your denial about me being sick or you just not believing me.

Recently in a fairly popular tv show there was a scene where two girls did something nice for a young girl with chronic fatigue syndrome. The two girls later saw the girl playing volley ball and confronted her about it. Turned out the girl with chronic fatigue syndrome had a healthy twin. The girls then apologized to the young girl with chronic fatigue syndrome. This did shed a little light on the chronically ill and implied there are no good days only bad days. In my mind it misrepresents chronic illness, because we do have good days they maybe few and far between but they exist. We should never be mocked or condemned for doing something for ourselves on a good day.

It’s extremely frustrating to have to carry around a black folder with me that has countless information in it for other doctor should I end up in the ER and need treatment. I have to carry and take medications on a regular basis.

I feel like I’m a jerk when I tell people not to use scented products around me sometimes they don’t bother me but most of the time they do.

Then I have people commenting on why do I have a tattoo why do I have died hair. I’m sorry what part of my life do you think you have full control over. Am I supposed to put everything aside that I want to be or that I want to experience for example having red hair or something that I’ve always wanted to have I’m not allowed to do that because you think I’m sick. Which I am, yes I am sick. But I’m not gonna live in some sort of self-pity cage and be depressed about everything all of the time because that’s not who I am. I’m going to try my best to do things I want to do and thus the reason I have been working on my bucket list things which I have explained before in other blog post that those things are very simple.

Dying my hair was a huge bucket list thing for me. A friend of mine dyed it for me and I am extremely grateful to her and I love it and it’s something I wanted to do it for me.

I find it ridiculous in my opinion when I am dealing with life-threatening diseases that someone tries to parent me, by discouraging me from living.

I know my disease and what they are doing to me. Stop telling me what to do, because you do not have my diseases, nor are you my parent. You also do not have the education Doctors do.

I am not giving up on myself. What does me not giving up on myself look like? Doing things I love. Trying things I wanted to always try, learning things I was wanted to learn in the time period that I have left. Whatever the amount time that is whether it’s a week or another 10 to 50 years no one knows. Point being I shouldn’t have to explain myself nor should I have to justify anything that I do because it is my life you don’t justify everything that you do.

So get off my back, back up and deal with your own crap and stop trying to parent to me. Stop telling me I’m wrong. Stop telling me I don’t know how to take care of myself.

I’m doing the best I can for myself.

Take care of you fellow rare and chronic illness fighters. Living life when your sick should not be something you have to justify. Be happy while you can, relish in life on your good days. Be a free spirit, be you, you shine brighter when your true to yourself.

Hopeful always.

💗Anna

PS I will leave you with these photos of my Alice In Wonderland Cosplay enjoy.

IMG_4525

IMG_4539

Interview With Care Giver Angela

img_4344

Join Angela and she share shares her care takers journey. Angela’s daughter Anneliese lives with Blount’s disease. Please be respectful of Angela, and Anneliese’s story.

Blounts disease is where the inner bone of the shin bone fail to develops normally. This happens in young children and adolescents. Causes of Blount disease are unknown. Learn more about Blounts disease here. https://medlineplus.gov/ency/article/001584.htm

My name is Angela and I reside in Kansas. I am a mother to 4 children and a rare disease advocate. I am currently studying for my bachelors in psychology. I work from home as an Account Executive for My City Med and my daughters name is Anneliese

Anneliese was diagnosed with Blount’s Disease, a rare bone disease that affects both legs and due to unsuccessful bracing she has to have surgeries to help correct the condition. She was diagnosed at 18 months old and will be 10 years old next month.

Life changed for me when she was diagnosed with depression. When you hear your child say they are tired of having this condition and would rather just die, it is heartbreaking. Her having thoughts of suicide and being bullied is nothing a mother wants to witness. I never realized the effects medical trauma can put on children so young.

Life changed for Anneliese when she was bullied and her whole mental and positive attitude went downhill. I had to advocate for her and get her set up with school counselors and make sure the school took appropriate action for those kids who were bullying.

Life before the diagnosis was calm. I was a young mother but was not prepared for the journey ahead.

The diagnosis has changed my life by her. She has made be a stronger and better person. She has made me the best advocate I could be and to not be afraid at what life may throw at you. She has taught me patience, and understanding and to pay it forward whenever we can.

A day in the life as her primary caregiver consists of physical therapy, psychology appt. and medications. She is also now part of choir to keep her busy so taking her to practice and being part of her special events. We also have follow up appointments at children’s hospital which is 3 hours away.

The most challenging thing we have faced is not enough answers. there isn’t a set prognosis with blounts. Every time she is operated on the chance of reoccurrence can happen again. We also get stared at in public due to the way she walks. I used to get angry but now if I catch them I try to advocate about the condition.

Keeping up with as in regards to my outside life? I may be busy, but I have learned I need to make time for myself to be a better mother and caregiver for her needs.

To others living with Blount’s disease. The journey may be long, painful and frustrating, but the support is there. Reach out to those who have the condition, ask questions and never be afraid to get a second opinions. We are our best advocates and our own doctors in the rare disease community.

To others who don’t have Blounts disease, We as a rare community need to stick together and support one another. Together we can raise awareness and make our voices heard. We may not be on the same journey path but all of us in a way as caregivers and patients know the effects of having a rare condition not being easy.

Anneliese has undergone about 6 operations so far with more in the future. there isn’t enough research on Blount’s disease nor a supporting foundation for this cause. My goal in the future is to get a non profit started and In the State of Kansas I recently got the governor to Proclaim March 26th as Blount’s Disease Awareness day.

Angela you are correct we do as community need to stick together. Us rarities matter. Thank you for sharing your journey, you are courageous.

Hopeful always.

💗Anna

Care Givers Interveiw With Jerry Wheeler

img_4293

Join Jerry (a father and a husband) as he shares his journey being a care giver. He takes on the role of being both mom and dad. His wife Bonnie is affected by VEDS also known as Vascular Ehlers Danlos Syndrome. Bonnie isn’t the only one living with disease. Please be considerate of Jerry and his journey, as he shares his story in his own words.

Vascular Ehlers Danlos Syndrome (VEDS) is considered the most severe form of Ehlers Danlos syndrome. It causes spontaneous blood vessel and organ rupture. EDS causes frequent joint dislocations and subluxations. It is an inherited connective tissue disorder. Learn more about VEDS here http://ehlers-danlos.com/vascular/

Ulcerative Colitis is an inflammatory bowl disease, it causes ulcers to form in the intestines. Learn more here http://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/basics/definition/con-20043763

Conversion disorder causes neurological symptoms, it is a mental disorder. Learn more here http://www.mayoclinic.org/diseases-conditions/conversion-disorder/basics/definition/con-20029533

My name is Jerry Wheeler. In my family my wife and my oldest son have Ehlers Danlos Vascular disease.My daughter has Ulcerative Colitis, and my youngest boy has Conversion disorder. My children’s names are in order of age;Amanda 20,Justin 19, and Robert 12.

My wife Bonnie has had problems with hip dislocations since her early thirties, she has had Varicose veins surgeries on her legs twice in her younger years, she was precancerous and had to have a partial hysterectomy so many years back and her gall bladder failed. She has always bruised easily and suffered from debilitating headaches all her life. Four years ago she thought she was coming down with the flu and had chest pains . She went to a walk in clinic and they sent her to the Er at our local hospital, they then sent her immediately to a larger hospital for emergency surgery on her Aorta which was dissecting. During that surgery she died three times and on top of putting a stent in her Aorta, the doctors had to put and emergency stent in her femoral artery which collapsed. She’s almost lost her leg.

She was sent home a week later but had to be transported back when a suroma formed in her surgery wound at her pelvis. She had to have a muscle flap taken from her thigh to correct that hole caused by the infection. That in turn wouldn’t heal. The new skin kept dying and the wound had to remain open eventually with a wound vac installed until it healed. This whole ordeal effected my family traumatically .

My son developed Conversion disorder from the trauma of seeing his mother, who he is closest to nearly die and in terrible pain. My wife ended up being in a rehab center for wound care six months before she could come home. During this time it was confirmed she had Veds. I took the kids to see her in Hartford an hour a way whenever we could usually twice a week but it was a strain trying to work and I relied a lot on my two teenagers at the time to cook and help with Bob.

Bobby is adopted we have had him since he was six to nine weeks old he was abandoned in a drug house. He was very sick with drug withdrawal and possible complications from HIV and Hepatitis C which he carried the antibodies for but thankfully we later learned not the diseases. His mom has always been his anchor, she saved his life when he was failure to thrive by feeding him every hour on the hour for the first months of his life while he couldn’t keep anything down. He had seizures for his first year of life. Now with conversion disorder due to stress breakdowns his body with shut down with pain in his legs , shoulders, arms etc where he won’t be able to walk. I have him enrolled at a special school to help him with this but I still have to get him ready for school in the morning give him his medications and wheel him out to the bus which he is often in a lot of pain in the mornings.

Bonnie is in hospice at home. She has nurses come in as well as AIDS who come twice a day during the week. She presently cannot walk to far and she had stroke symptoms when she tries to walk across the room from the bathroom. She is not safe to go unescorted. My wife is 44 years old. She should not be struggling to live at this time in her life. I or my son Justin have had to grab her to keep her from collapsing several times.

Bonnie had aneurysms throughout her body. The worst being in her Carotid arteries in her neck which could rupture and kill her anytime. Due to the weakness of her veins due to her body making the wrong kind of collagen, her veins are inoperable. They would collapse if doctors tried to work on them and she would bleed to death in minutes. The Carotids as well as her brain cause her to suffer seizures, pass out, have multiple mini strokes where he left side will go numb but usually although weak returns to normal in a few hours, but exhausts her.

My older son Justin coughs up blood occasionally from ruptured capillaries in his lungs, he has recently started having loose joints in his hips. His mother suffers frequent dislocations of her hips, pelvis, shoulders, fingers,jaw, and even fingers, especially her thumb. We are worried because his symptoms are showing over a decade earlier than his mothers did. We only found out she had the genes when we were able to qualify for state aid to test him and my daughter of which he was positive.

My daughter Amanda became sick from her disease Ulcerative Colitis when she was fourteen. She was bleeding from her rectum and was too embarrassed to tell us. When we found out we took her to her pediatrician who said she was Iron deficient . So we started her on iron supplements but they didn’t help. One day she couldn’t get off the couch and I took her to John Dempsey hospital in Farmington who sent her to Children’s in Hartford. There we were told she had to have her large intestine removed. I still remember the incredible sinking disbelief I felt when we were shown her scans. Her intestines were massively infected. We were given two choices have the surgery immediately or prepare to bury our daughter. My wife would spend so many months with her at the hospital. Amanda was there for over six months. When she came home she had a colostomy bag for eight months before her surgeries to attach her rectum to her small intestine and create a J pouch to help replace her large intestine.

During these times traveling back and forth to Hartford it was exhausting. I had to take care of the boys on my own. We had our family turned upside down. Right now we function on an hour by hour basis.

I have had to be Mom and Dad and advocation for my wife to make sure everything is being done for her that can. My wife battles on top of her illness depression and she doesn’t want to be treated as an invalid or an elderly person in their final stages , I have had many discussions with hospice on this. I have to give her whatever life I can.

I’m learning to take care of meals although I have assistance from the caregivers. I have to get my son off to school of which he just started regularly because we are still learning when and when not to send him with his pain. Many times I’ve had to leave work to go get him forty minutes away.I lose almost two hours pay to do this so I’m trying to educate the school and myself on how to care for him. He attends counciling services to help but it’s a busy week every day.

Bonnie still try’s to be independent and who can blame her but I’m scared of her passing out and hurting herself if she doesn’t tell me she’s getting up. Myself I do building maintenance of which I am on call twenty four seven. If my boss wasn’t flexible on time I couldn’t do my job and take care of my family.

My daughter is away at school on a full scholarship thank God. But she doesn’t drive so I go get her when she needs to come home. Her college is two hours away. Her health overall is good but she still had complications from her UC. Presently Justin and Amanda have no insurance as the state booted them when they turned nineteen. Bobby is adopted so he will till he is eighteen, me and Bonnie most likely will lose our coverage in August which terrifies us because we can’t afford it and she needs the care.

In our home I work and my son supports his car and his text books for college with a part-time job. I’m proud of him. He’s an honor student who wants to go into law enforcement. With his health that may not be possible.We have been fortunate to have two make a wish trips in our home . One to San Francisco two years ago for Justin who got to spend a day with the San Francisco Pd patrolling the bay among other things we did that week

And one for Bobby who took us to Hawaii for him to swim with dolphins. We have suffered many things and been blessed too. It’s on going. I manage with help a lot of medications and am doing my best to make the right decisions to make sure everyone has what they need. I’m exhausted most of the time and thankful for the help we receive. My kids are trying to start their own futures and worried sick about their Mom.

Me and Bonnie have been married twenty two years and are a year and a half apart in age. Me being the older.I hope this answers your questions feel free to correspond if not. I would have answered your request sooner but I didn’t know if this was spam or not.

Thank you Sincerely,

Jerry Wheeler

Jerry, your journey is eye opening it helps others see your strength and resilience. You truly are a brave soul. Keep doing what’s best for you and your family.

Hopeful always.

💗Anna

Steph May Heads Shares Her Journey

img_4202

Join Stephanie as she shares her journey living with EDS, Fibromyalgia, and body dystrophic disorder. Please be considerate of Stephanie and her journey.

Learn about EDS (Ehlers Danlos Syndrome) here http://ehlers-danlos.com/what-is-eds/

What is Fibromyalgia http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243

Learn about body dysmorphic disorder http://www.mayoclinic.org/diseases-conditions/body-dysmorphic-disorder/home/ovc-20200935

I am from Newcastle upon Tyne UK but now live in Selby, North Yorkshire UK with my partner and our two boys. I am 30 years old. I have Ehlers Danlos Syndrome type 3 and fibromyalgia and also suffer with a mental illness called Body dysmorphic disorder. I love art and find writing poetry and making art journals very theraputic, helping me deal with alot of the emotions and pain associated with Eds, Fibro and Bdd.

Life changed dramatically during my first pregnancy. I was 20. Growing up I always suffered with joint pain, migraines and chronic fatigue, as well as many other problems such as bowel and bladder problems. These problems got worse when I started my periods and then worse again during pregnancy. Since my pregnancy my health has continued to change and a second pregnancy resulted in more damage to my pelvis, spine and mental health also.

It is hard to say what life was like before my diagnosis as it seems my diagnosis is forever changing. Some doctors believe in my condition and others don’t. My whole life has been spent arguing with doctors and specialists, going backwards and forwards. I am still fighting to be heard.

Being told I suffer with Eds has at least reassured me that all the pain and difficulties are not just in my head but then it changes and I see a different doctor who tells me that eds is not real and I am left feeling mad again. Being diagnosed with BDD was a relief. It meant I had a name for what was wrong with me, a reason for why I sometimes behave and think the way I do. It was a relief but unfortunately doesn’t change the way the illness affects me physically and mentally.

A day in the life of me… anxiety, fighting through physical pain and fatigue just to do basic tasks. I get very frustrated when I struggle to do things like getting down on the floor to play cars with my children. I fight off depression daily and work around medication, rest and routine in an attempt to manage daily life. Living with Bdd means l am constantly anxious, I never relax and have daily obsessive rituals that I struggle to control, such as compulsive skin picking, brushing my teeth too much and constantly thinking about how ugly and repulsive I am all day, every day. I find the combination of physical illness and mental illness is exhausting; a permanent battle to attemp a “normal” life, whatever that is. Personally I don’t believe in normal as everyone is unique and different so who’s to say what’s normal?
The most challenging things I have faced because of my illnesses is the constant fight to be heard. The constant judgements of others and the pain I have to deal with every day without much understanding and support from the medical professionals that I meet.

I find that I cannot keep up with others. I miss out on alot of things thanks to my illnesses. I often have to cancel plans or leave early which affects my relationships with others. My anxiety issues also affect my ability to keep up with others and quite often I avoid people to avoid causing myself and others more issues. I feel older than other people my age.

I would tell others who are living with my diagnosis to never give up. Never stop fighting, research as much as you can. Knowledge is strength. Talk to others with the same condition/s. Knowing you are not alone helps and we learn from eachother as well as offer eachother support. I would also suggest trying to find a hobby or outlet. Something that allows you to express yourself and be yourself regardless of ability. For me that is art and poetry. It helps me a great deal.

For the people who don’t have the same illness/conditions I would say never judge and be patient with others. Be kind. You never know what a person is dealing with physically and mentally. They may look fine on the outside but be suffering alot. Disability and illness has many forms and not all are visible. I’d also say that people should never take their health or their loved ones for granted. Be kind and always try to educate yourselves as much as you can.

My journey has taught me such amazing strength and determination. It has taught me to never give up and keep fighting as hard as you can. Learn as much as you can and it has taught me to never take anything for granted.

You can read some of Stephanie’s poems on her blog page here https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

Thank you so much Stephanie for sharing your story. You truly are strong woman. I agree with you that we must research as much as we can, and that we must continue to keep fighting. You are a brave soul.

Hopeful always.

💗Anna

Poem “Tired Stripes” By Steph May Heads

img_4263Stephanie May Heads a guest blogger brings you another one of her fantastically written poems. You can check out her page and bio here https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

“Tired Stripes” By Stephanie May Heads

Tramadol, morphine
Naproxen too,
None of it works
So what do I do ?

Keep your chin up they say
I would if I could
Can’t lift my head up
Can’t do wot I would

Never any balance
Never any peace
Please give me a break
From the pain at least?

Bendy joints
Cancelling plans
Sickening pain
Only zebras understand

Constant exhaustion
Ruins my days
I’m trying to adjust
To my stripey ways

Some days are better
Some days are worse
As I keep fighting
This miserable curse

I want to get down
And play with my boys
I hate this illness
And what it destroys

I keep having a laugh
And wearing a smile
But today I’ve had enough
So I’ll be honest for a while

Eds sucks, it’s nasty
And it’s cruel.
It tries to take everything
If you let it, it will rule.

So give it the finger
Stay strong zebra friends
Cuz tomorrow I’ll be fighting again
Tomorrow I’ll make amends.

But just for today
I’ll be sad and be pained
The pain has me beaten
And in bed I remain

This too shall pass
And it won’t be as bad
I’ll lift my head again
I won’t look as sad

Chronic illness is hard
Whatever its type
It isn’t fair
It isn’t right

So lets stick together
Zebras, butterflies alike
Maybe one day there’ll be a cure
And it will be alright.

Keep fighting it hard
Have a moan if you must
We might have EDS
But it doesn’t have us!

Love to my zebras
And to all those who need it
Mental, physical illness
I know we can beat it!

Stay strong and keep fighting ❤

Poem “Sick” By Steph May Heads

img_4247

A big welcome to Stephanie May Heads a guest blogger. You can check out her page here https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

“Sick” By Stephanie May Heads

I’m Sick of them not hearing me
Sick of not being heard
I’m Sick of being lied to
By these jokers, they’re absurd!

I’m Sick of being sickly
Sick of feeling ill
I’m Sick of not being able,
Taking yet another pill!

I’m sick of trying to prove myself sick of explaining again!
I’m sick of being patronized
Telling me it’s in my brain!

They can see what lies in front of them
They can read what lies behind
They can bend me, twist me, see the proof,
Don’t say it’s in my mind!

I’m Sick of all these tablets
Reading lies in every letter
Grow a pair and help me
At least try to make me better!

I’ve followed your “advice”
I’ve swallowed every increased dose
I’ve done everything you’ve told me
Yet I just keep getting worse

Why do the ones that suffer
Get ignored, dismissed again?
Why are we made to feel like
We are troubled and insane?

Stop ignoring us and listen
Stop and think! It could be you!
Have you ever just considered
That our suffering is true?

Chronic illness isn’t fantasy
Pain of any kind is hell
Listen to us now please
We have stories we need to tell!

We’ll keep fighting til you hear us
We won’t ever stop
Until one day it’s too late
And our bodies make us stop

Not all doctors are alike
Not all surgeons are the same
But every Doctor I have seen
Finds something else to blame

So open your eyes and see me
Then listen carefully
Maybe then you’ll hear my truths
Maybe then you might help me?

Rare Disease Day 2017

img_4173This year for rare disease day I asked people living with rare disease to share a photo of themselves and their diseases/disorders/genetic illness. Aiming to raise awareness for rare diseases can be challenging because they are just that, rare. I hope that you enjoy this slideshow of us rarities.

To learn more about the diseases/disorders/genetic illness please find below the descriptions of some of the rare/disorders/genetic illnesses/complex diseases mentioned. Happy rare disease day. Let’s make the invisible visible. Together with collective voices we can make a difference.

Are you or a loved one living with a rare disease? Want to share your story!? Now is your chance! I am conducting interviews to help you share others stories and raise awareness for rare disease. Please feel free to email at annawerrun@gmail.com if you are interested. Interveiw is done VIA email. You will be featured on my blog. Hopeful always. Let’s help raise awareness for rare disease! Check out the other interviews I have done here (some of the interviews that have been conducted thus far are of both rare diseases in addition to invisible and chronic illness). Caretakers can be interviewed and chronic/rare diseases warriors. https://annawerrunblog.wordpress.com/interviews/

img_4262

This year for rare disease day I asked people living with rare disease to share a photo of themselves and their diseases/disorders/genetic illness. Aiming to raise awareness for rare diseases can be challenging because they are just that, rare. I hope that you enjoy this slideshow of us rarities.

In hopes of raising awareness for rare diseases on rare disease day February 28 2016, I set out to crest a rare disease slide show. I made one a few days before Rare disease day and am currently working on the second one. You can find the second rare disease video here https://www.youtube.com/watch?edit=vd&v=dj9nO9g5ssY

To learn more about the diseases/disorders/genetic illness please find below the descriptions of some of the rare/disorders/genetic illnesses/complex diseases mentioned. Happy rare disease day. Let’s make the invisible visible. Together with collective voices we can make a difference.

Are you or a loved one living with a rare disease? Want to share your story!? Now is your chance! I am conducting interviews to help you share others stories and raise awareness for rare disease. Please feel free to email at annawerrun@gmail.com if you are interested. Interveiw is done VIA email. You will be featured on my blog. Hopeful always. Let’s help raise awareness for rare disease! Check out the other interviews I have done here (some of the interviews that have been conducted thus far are of both rare diseases in addition to invisible and chronic illness). Caretakers can be interviewed and chronic/rare diseases warriors. https://annawerrunblog.wordpress.com/interviews/

Scleroderma is a group of rare diseases, causing connective tissue to harden, connective tissue is in your skin, blood vessels, joints, ligaments, tendons and organs. You can learn more about scleroderma here https://www.hopkinsscleroderma.org/scleroderma/
Vascular Ehlers Danlos Syndrome (VEDS) is considered the most severe form of Ehlers Danlos syndrome. It causes spontaneous blood vessel and organ rupture. EDS causes frequent joint dislocations and subluxations. It is an inherited connective tissue disorder. Learn more about VEDS here http://ehlers-danlos.com/vascular/
Hyper-mobility Type EDS (HEDS) is a more common form of EDS within the EDS classifications. HEDS is an inherited connective tissue disorder.
HEDS causes joint dislocations and subluxations, severity varies. HEDS is more then just joints. You can learn more about HEDS here http://ehlers-danlos.com/hypermobility/
Diffuse scleroderma cause systemic sclerosis (sclerosis means the hardening of tissue). Learn more here https://www.sclero.org/scleroderma/types/systemic/diffuse/a-to-z.html
CREST (limited scleroderma) develops gradually and usually the hands, lower arms and legs, fingers, toes, and sometimes the face. Learn more here http://www.mayoclinic.org/diseases-conditions/crest-syndrome/basics/symptoms/con-20031524
Synringobulbia with Syringomyelia is a rare condition the causes fluid filled tubular cysts (synrix) in the spinal cord (central and cervical). The synrix extending into the brainstem is when syringobulbia results. Learn more about these complex conditions here http://patient.info/doctor/syringomyelia-and-syringobulbia
SVT (supraventricular tachycardia) is a rapid heart beat the includes beats equal to 100 BPM (beats per minute) or higher. http://www.emedicinehealth.com/supraventricular_tachycardia/article_em.htm
Blounts disease is where the inner bone of the shin bone fail to develops normally. This happens in young children and adolescents. Causes of Blount disease are unknown. Learn more about Blounts disease here https://medlineplus.gov/ency/article/001584.htm
Eagles Syndrome causes reccurent pain of the jaw, threat and tongue. Pain is triggered by swallowing the styloid is affected (styloid serves as a connection for muscles into a part of the bone in a skull). In Eagles Syndrome it causes the styloid to become longer than it should be thus resulting in pain. Usually corrective surgery can be done. Learn more about Eagles Syndrome here. http://emedicine.medscape.com/article/1447247-overview
Sarcoidosis causes inflammation, abnormal masses and nodes. Pulmonary Sarcoidosis is causes inflammation in the lungs and lymphatic systems. You can learn more about Sarcoidosis here http://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/dxc-20177970
Gastroparesis this translates into lames terms stomach paralysis. Learn more http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971
Chiari Malformation is a structural defect in the cerebellum, this part of your brain controls balance. Learn more here https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet

img_4210

 

Positive Self Talk

img_4151How to change your thinking from negative to positive.

How do we stop the negative thought process. It may sound simple it all starts with you. If you are defeatist the minute you were told that you didn’t achieve the goal that you wanted to or when the prize that you had set your eyes on. Maybe you got rejected for something like a job interview it’s the first thing that comes to your mind is, “I suck. I am no good. No one will hire me.” We essentially let these kind of thoughts bring us back into a downward spiral where we only think of the negative.

First and foremost the way I think about my life now is completely different from how I used to think about my life. I used to be a person that was negative I did not think things would get better. And then when I had the epiphany of it all starts with me I realized I would shape my own future. I started by telling myself every single day that I am a beautiful person I deserve to be respected I deserve to be treated like I am a human being.

I realized for a time when  I would mess something up, I would immediately call myself “stupid.” After a while of hearing this I eventually felt worse about myself. It’s a fact that we listen to our own self talk and if our self talk is negative we lower our own self-esteem.

Once I realized what I was doing to myself “self-sabotaging, negative self talk.” I made an effort to practice “positive self talk .” I started this by walking to the mirror in the morning and complimenting myself. “You are a woman of value, you, have, great worth, you are important, loved, special, and worthy of respect.” The first while I laughed at myself, eventually it became a routine and the words just rolled off my tongue.

Now if I accidentally break a dish because I can’t hold it I shrugged it off, I don’t resort back to calling myself “stupid.”

Do you practice positive self talk? Remember whatever you say about yourself you are listening to your words and you will believe them whether those words are positive or negative is up to you.

It is import to do things for yourself. Whether this is going for a walk, or going on a trip. Doing things in life to pamper yourself will make you feel good. Finding happiness in life whether it is what we do for work or what we do for recreation can make or break your mentality.

This is your journey. What would you like to do with your time to relieve your stress to help bring you back to a more centred, levelheaded you.

What is it what is the activity that you like to do. When is the last time you did this activity? Why do you not do this activity more often?

Do you have a bucket-list? What is stopping you from doing that?

Stop holding yourself back because you will be the person that regrets not doing something for you. Do it before it was too late.

If no one believes in you would you still believe in yourself? I believe in me. This is all that matters. I believe I will continue to push myself forward. I’m not going to look backwards, I’m not going to fall back into old habits. Positive self talk, and encouragement all the way.

I have thoughts, I have ideas, I know I’m important, not only to myself but to others. I’m happy. I love life. My positive mentality will be intact, my heart will not feel heavy.

I remain hopeful always.

💗Anna