Interview With Care Giver Angela

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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.

ūüíóAnna

Care Givers Interveiw With Jerry Wheeler

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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.

ūüíóAnna

Steph May Heads Shares Her Journey

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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.

ūüíóAnna

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

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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/

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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

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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.

ūüíóAnna

Kimmyn’s Life, Illness and Journey

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Join me as Kimmyn shares her story, her life’s journey and her illness told in her own words. She shares her illness journey and talks about Fibromyalgia, Lyme, Ehlers Danlos Syndrome, Mast Cell Disease, and POTS.

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

Discover information on Lyme disease here https://www.cdc.gov/lyme/

What is Ehlers Danlos Syndrome http://ehlers-danlos.com/what-is-eds/

Learn about Mast Cell Disease http://my.clevelandclinic.org/health/articles/mastocytosis

Discover information on POTS http://www.dysautonomiainternational.org/page.php?ID=30
Where do I begin? This question has been the question of the year for me. Mainly pertaining to new patient doctor appointments. Each new appointment I’ve gone to I am always trying to come up with new ways to give the doctor my health history in the shortest, most thorough possible time. Recently I have been telling the nurse who takes my blood pressure and asks, “So what are you here to see the doctor for today?” Man do I dread that question, anyways I now respond with, “If you don’t mind I’d like to spare both you and I some time so would it be ok if I just tell the doctor?” Sometimes they are fine with that and others will insist on some sort of brief explanation. Either way it keeps things exciting and my world of monotony.

So for the purpose of this interview I’ll start with introducing myself. My name is Kimmyn (pronounced Kim-in), I am 36 years old and I’m a mom to Jordyn who is 17 and Ethan who is almost 13. Being a mom was who I wanted to be growing up. It has been the most fulfilling, rewarding, difficult and best thing that I’ve ever experienced. My childhood was the reason I wanted to be a mom, I wanted to be a mom to which I dreamed of having when I was a child. I had a mom and I know she did the best she could with the tools she had, but there were four basic needs that I craved and promised myself I would give my children. Acceptance, affection, believing me and in me, and encouragement. These four things would potentially play a major role in my journey. My journey I like to call “My bumpy road to chronic illness: to be continued…”.

I have been sick the majority of my life, chronic strep, chronic bronchitis, chronic sinus infections. When I was 16 living in Wyoming, (sent there for reform school), I became severely ill will mono, tonsillitis, pneumonia and bronchitis. I was in the hospital alone close to a month which in itself was hard at 16, but I also had to deal with the absence of my mom. Now, she would be in contact with the doctors and such but emotionally I had a difficult time lacking the comfort a child always desires especially when they are ill. It was during that time that I was also diagnosed with Epstein Barr virus and chronic fatigue syndrome. Eventually I returned home near to my 18th birthday and shortly after become pregnant with my daughter. I had a very difficult pregnancy and during that time my chronic pain was starting to make its debut. I dealt with aches and pains in my childhood, but actual chronic daily pain came about at this time in my life. It wasn’t until one day as I was laying on the floor complaining of pain which usually was either my feet, hips, knees or just achey all around that my mother said “I think you might have something called fibromyalgia.” Now something you should know about me, God has blessed me with the ability to find answers and to never stop until I do. My faith is what defines who I am and what has given me strength when I feel like giving up and what has become the backbone to the fighter in me. It also comforts me in my belief that I’ll one day be healed and one day use this journey to help others and give them hope through my story. I wish I could say I always sound this confident but I will be honest and tell you there are many times I lose myself in my illnesses and become angry and resentful and I want to give up. But that day my mother mentioned fibromyalgia to me I immediately immersed myself in whatever information I could find and eventually finding doctor who knew about it and who gave me my diagnosis.

In 1999 when I was first diagnosed I had not ever heard of fibromyalgia. And I remember the first time I met someone else with it I just was so shocked I wanted to know everything and anything she knew about it. I soon realized it also wasn’t really truly accepted in the medical community either. So early on I developed this shame and embarrassment about it which then turned into this secret that for the most part I would not make any mention, unless someone else happened speak of it first. It also brought about problems in my marriage, it was very hard for my ex husband who was a very factual person, believe in something he could not see or did not have a blood test to prove or X-ray to show. This would also be the case with friendships and family members, adding to my issues of acceptance. Over time I eventually became very isolated. The dreams of becoming that PTA mom I always wanted to be remained a dream. After my divorce I went down a path of self destruction for a little bit. I beat myself up that I couldn’t function physically like everyone else my age. I blamed myself for a failed marriage and for not being the mom or wife I was expected to be. I eventually through government aid was able get my own place for me and my two children. Physically I struggled to care for my children every other week. The expectations and standards demanded of me from my ex husband and my mother played emotional mind craziness. If I couldn’t perform to their standards I was reminded and I would torment myself with guilt. These expectations would be ones intended for a healthy able bodied over achieving mother. So time after time I fell short and failed. I would have to reach out to my mother who was the only one available to help with me and the kids. Asking for help was something I despised, it was indoctrinated in me that asking for help was just like saying I was a failure. So this feeling of failure was a scarlet letter I wore that read “Worst Mother Ever”. This thought process spewed over to my children. My daughter, who was my oldest, was influenced by these opinions and by my clear lack of confidence to be her mom. Forgiving myself for failing her is something I am still learning how to do. This is why I feel so compelled to share my story. It is not our place to decide whether someone is or isn’t sick by just simply judging from the outside. Chronic invisible illnesses don’t have a ‚Äúlook‚ÄĚ or a ‚Äútype‚ÄĚ. What it does come with is a voice and that voice deserves to be heard. If someone you know is experiencing something similar believe them the first time, and then decide to be a support and refrain from passing judgment. If it is you personally, then stand firm and know that the ones who believe you the first time are the special ones, they are the ones who will be there no matter what. I have learned this the hard way, the majority of my battle, my journey, my life, has been spent trying to prove to everyone or anyone that I am truly sick. I felt if I didn’t perform at the level I was expected I was a failure. I would have moments of deep pain and confusion, I could not understand why my physical pain was never acknowledged, believed or taken serious only because it was unseen. By no means did I want a free pass or to be excused of being a parent. I wanted the freedom and compassion to be an imperfect parent. It’s unfortunate when you are living with a chronic invisible illness because you can not predict your good days or your bad days. The only thing I can schedule are doctors appointment, I say that in a truthful humor sort of way. I personally can’t predict how I’m feeling, at times it can fluctuate from moment to moment. Does that make it difficult to be a parent or a partner or a friend? Absolutely! That’s why I call those people who believe and stick by us special. The emotional pain of continually failing to meet someone else’s standard, often times was more painful then the physical pain. So eventually the hurt turned into anger, anger my chronic illness was used against me, anger of the lack of compassion, flexibility and understanding, ANGER FOR THE IGNORANCE OF OTHERS. I was fighting a losing battle, constantly teetering on giving up and the fighter born in me saying, “No! Do not give up, that is not who you are!” I have often asked, ‚ÄúWhy would anyone choose this? Why would someone pretend to live a life of pain and suffering? Do any of you know me well enough to know my children are my life?‚ÄĚ It is ironic that I have never had those questions answered. Eventually, I would fall back into the self destruction, not totally giving up but just checking out mentally from the constant conflict and chaos in my mind. Brain fog can be so debilitating at times and exhausting. I could expect following these time outs I gave myself meant, guilty comments, unwanted opinions, put downs and judgments. Which were also interpreted without fail that I was having a mental health issue. So to shut the unwanted opinions down I would try a plethora of different anti depressants, anti anxieties and whatever was recommended. Every time I was prescribed something I would try it and it would come with some sort of side effect that never justified the means. Feeling worse than I was already feeling did not make sense, so I would stop them and keep that to myself. For awhile I almost forgot about the ‚Äúfibromyalgia‚ÄĚ and took on this identity of having mental health issues. When I look back now I recognize that I not only took on the identity, but it became who I was. Inevitably those around me saw me as that person, spoke about me behind my back as if I was that person and treated me like I was a mentally ill person. It was my ‚Äúexcuse‚ÄĚ for not feeling well and it supported me for times I needed help. As if a mental health problem was more socially acceptable than a chronic pain issue called fibromyalgia, what later turned out to be a symptom of a larger problem. There was frustration, anger and hurt that I couldn’t be honest about my mystery chronic pain condition. I wanted to defend myself, explain I’m not just some pill popper, I’m in legitimate pain and I can not consistently function physically the way I wanted or what was expected of me. The lack of belief and acceptance led me deeper into isolation. Through phone conversations and in person my mother would say she believed me. She would even say she had the same problems and felt the same way. But it was difficult for me to identify with her when she was a runner, she would run 2-3 miles, 2-3 times a week. I could only dream of that energy . To protect my emotional self I became a prisoner in my own body and my own mind. It never felt right that I was pitied and spoken about for something I was merely going along with because I could not be honest. I knew physically I was suffering and I would attempt to speak out and try and explain, without fail it never was truly supported.

I was taught early on that my mother and step father would never help adult children financially in any way whatsoever. So any help I received was solely for my children. Which consisted of some financial help towards extracurriculars and some for basic needs. Transportation soon became one of my larger needs for help, in 2008 I was diagnosed with a rare eye disease called Retinitis Pigmentosa. Night time driving over time has become extremely limited for me. If I needed child care for an extended amount of time or an overnight she would only take one of my children at a time.So the hoops I had to jump through were just not worth the time and energy. When I did, there were stipulations, agreements and continual reminders of when the expiration of “help” was nearing soon.

My daughter has suffered the most, all she has ever known was a sick mom. She’s my over achiever child, she’s the sunshine to my soul and the moon light when I go to sleep. I would beat myself up for missing her dance recitals or dance competitions or back to school nights. Constantly failing to meet this unattainable quota. I understand I put so much pressure on myself, constantly comparing myself to someone I was never meant to be.
If could go back in time I would allow myself room for mistakes, I would have been honest about how I felt physically and would never let someone else dictate how I felt physically, and I would believe in myself. The repeat feeling was self doubt, and failure. Whatever I did or didn’t have, or whether it had a name, should never matter. I would say support from family and friends your belief in us is half the battle. If you have that and you can focus on your health and do whatever it takes to heal your body, then half the battle is already taken care of. I think I’ve spent more of my time trying to prove to others I really am sick then I have on actually healing myself and getting better. For a reason I’ll never know, my mother struggles to emotionally support me, listen to my fears or my cries for help. Those needs make her uncomfortable to the point of pushing me away. I yearn for a call to just ask me how I am doing. Something happened in my childhood and for that she never forgave me and she has struggled to love me unless it’s on her terms. I choose to share this part of my story with you, to stress the importance of unconditional love, acceptance and support, and most important to know you’re believed. If you are someone who is struggling with your “invisible illness” I want you to know I believe you. So often those of us who are on this journey or have gone through it know the craving for love, acceptance and support, true genuine support. The strength to give that kind of compassion could start the healing to someone’s suffering.

The years I spent in self doubt and anger towards my defective body, over time caused severe damage to my spirit. I’m now learning to love myself for who I am, even if others find that difficult.

As time went on I met a man and eventually we moved in together. He was the first and only boyfriend I ever introduced to my children. I was led to believe we were going to get married. Going against you faith which is a huge part of me. I also was very upfront with him about my ‚Äúfibromyalgia‚ÄĚ which I was deathly afraid of telling him for fear of rejection. But after I told him he acted like a he knew what it was and I felt the weight of the world come off my shoulders and it was like someone finally accepted me for me. He really cared for me and my children and opened my eyes to things I was unable to see before. It was 1 year into our relationship which was 2 years ago this past January I became very sick after taking care of my son who had been sick. Looking back I believe whatever virus or illness we had was what induced both of our symptoms. I never fully recovered. I couldn’t get out of bed some days, my physical pain was at an all time high, everyday that went by I became worse and worse. I was seeing an upper cervical chiropractor who practices the Blair Method. I’ve seen him off and on for 14 years. He’s been an absolute blessing to me and my kids. He told me I’m one of very few patients that he has treated who has been so chronic. I was seeing him 5 times a week and still could not hold my adjustment. But I was so desperate for pain relief, if the visit gave me 30 minutes of relief it was worth it. That chiropractor, about 6 months ago mentioned to me that he had another patient who had something called Ehlers Danlos Syndrome, and thought possibly that’s what I may have. He immediately connected me with her and she has become my only real support system right now. Lisa has played a very instrumental role in my life and will continue to. Even if I just call her because I’m so scared and filled with fear, her prayers and encouragement will get me through challenging moments. She currently has her “official” Ehlers Danlos diagnosis and has joined me on my journey.

Unfortunately I was becoming more bed bound and trying to hide that I was getting worse. I would get up right before he came home and shower, do my hair, put my face on and start dinner so he didn’t know I was in bed all day suffering. I thought to myself, “This can’t be my life, you can’t just tell me I have fibromyalgia and the rest of my life is going to be this way.” So began my most recent journey which was to really find out the real truth of what the heck is stealing my life from me.

I was seeing a doctor at the time who was prescribing my pain medication and I went to him and said “test me for anything and everything!” And so he began testing me for anything I came to him with. Negative, negative, negative everything came back negative. Until one day I said “ok test me for Lyme disease.” And low and behold he calls me and tells me “Your Lyme test came back positive.” I couldn’t believe it! Finally I have a real name to all this suffering and I’m not making it all up. But more then any of those thoughts most importantly was I’ll finally get acceptance, love and support from my mother. Unfortunately it didn’t really work out that way. As much as I hoped and prayed after my treatment I would be “normal” and healthy, a hope that was not even for myself. It was only so I would not be a burden to everyone around me. So my Lyme began treatment began, consisted of 60 of IV antibiotics that were administered through a central venous catheter at home. I was connected to the line anywhere from 6-10 hours a day, depending how fast I could handle the drip without feeling worse. I dealt with vomiting pretty much every day, severe muscle spasms to the point they would look like I was having a seizure, I was so weak and in so much pain it was like death. Now during my treatment I received help from from my mother, help that I could not have done without. She picked the help that she would do, and I desperately accepted. The problem was the constant reminder that her help had an expiration date. The innuendos and comments she would make such as, “I’m not going to be able to continue this much longer, If your laundry is inside out when I get it that’s the way I’ll wash it and send it back and I’ll only do you and the kids laundry but not your boyfriends.” Those are a few examples, of what I interpret as conditions, control or plain convenience on her part and essentially the reminder once again that I was burden. And then the pressure of the expectation everyone assumed, “ok once treatment ended Kimmyn would be a brand new person”, was constantly on my mind and I lived in fear. My boyfriend during this time was extremely helpful and he did the best he could. It seemed he had genuine concern. At the same time I could feel his frustration and his own struggle of how his role was changing from boyfriend to caretaker. Also he was dealing with acceptance from his own family and their acceptance of me and my illness. I sometimes think if I had cancer it would be so much easier. Why is it that cancer receives so much acceptance and empathy? They thought he deserved better then a sick girl with no job and her two kids. When I wasn’t magically healed immediately after my Lyme treatment he didn’t have the strength to stand by my side and ignore the opinions of others, mainly his family. I believe that being in a relationship with someone who has a chronic illness takes a special kind of strength. You have to be able to stand through the storms not just hang around on cloudy days.

I ended up pretending I was getting better when each day I was getting worse. And I didn’t know how I went through such intense treatment and I was getting worse. And the fear I had to tell someone I wasn’t getting better over took me and it ran all my decision making. How was I going to tell the few people that were helping me that I wasn’t getting better? My mother had already given me her expiration date that her help was ending. And yes I was thankful for it but at the same time I felt I was a burden.

Well in October of last year I found a lump in my chest around the area my central venous catheter was placed. So per the advice of my doctor I went to the emergency room to get it checked out. And I couldn’t have been more shocked when the nurse gave me the news that there was a piece of the catheter left behind from when the doctor remove it. They also explained that it more than likely had been in my vein near my heart, but my body was trying to reject it and that’s the reason it worked its way to the fatty tissue of my skin. Recently in January of this year, I had the piece removed and the surgeon confirmed it was the “cuff” of the catheter. Now unfortunately I’m dealing with my incision sight looking very infected.

I will wrap this up with telling you currently where I stand, more like sit or lay down lol. I’m working on getting my ‚Äúofficial‚ÄĚ diagnosis. I have also been dealing with Mast Cell reactions for over a year. Covered in hives and red rashes daily. I have had a lot of labs done and it’s clear my histamine levels are bonkers high. I’m looking forward to meeting with a doctor who has EDS and Mast Cell herself. She also sees about 75 of us zebra patients in her practice. More heart breaking then my break up is unfortunately watching my almost 13 year old son present with serious POTS symptoms and has already been referred to a geneticist for Ehlers Danlos symptoms along with my daughter. So I’ll continue to do what I’ve been doing and fight. Now that my child has joined my journey the two of us are determined to spread the word. To tell everyone out there who may be suffering that we believe you! Like I said in the beginning this is definitely a bumpy road and it may get bumpier, until then‚Ķto be continued.

Interview With Will Randolph

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Photos from top to bottom are describe by Will. “The brace I sleep in when I have a migraine. Miami J Collar with the Occian Back. I need a new sleeping brace. It’s old. The second photo is brace I wear with my gel pack or out and about. My Aspen Vista TX. The third photo is the gel packs I keep in the freezer. Large in for my neck and the other one for my eyes.”

Learn about Chronic migraines here https://www.migrainetrust.org/about-migraine/types-of-migraine/chronic-migraine/

Find information on depression here https://www.helpguide.org/articles/depression/depression-signs-and-symptoms.htm

Join Will as he shares his story of living with chronic migraines and his journey with depression. Please be respectful of him and his journey.

My name is Will Randolph. I am 38 years old. I live in a small town in the south western corner of Colorado called Coretz.

I suffer from chronic migraines and depression. It all started when I was 28.

I used to be the rock, everyone could lean on. I was always dependable at home as well as work. The job I had the longest was seven years. In that seven years I called in seven times. I was always going out with friends to concerts or going camping and a bunch of other stuff.

After I started getting migraines all of the dependability slowed way down. I started having to cancel plans with friends and calling in sick at work. At first no one understood. I lost a few jobs because of my medical condition. I got lucky that I have not lost any friends. With calling in sick to work and losing jobs my home life went downhill. My wife and I both work and barely made ends meet when I was well. We struggled for two years trying to make things work. She got second developed a blood clot in her lungs that went to her heart. She passed away from that and took my unborn son with her. She left behind a daughter (from a previous marriage) her family and me. I soon started drinking heavily. I lose my wife and son. I lose my mind and everything else. My migraines got really bad. My aunt, uncle, and cousin took me in and helped me to stop drinking. By this time I lost three jobs. I had a few more jobs and girlfriends that I lost after that. Most recently I had a girlfriend for three years. I loved her more than life it’s self. She decided to leave me because she couldn’t handle everything that came with my migraines. She thought that Advil and Maxalt should be able to stop a Migraine. She swears that I am addicted to pain pills because I go through so many in a month. I average 17 migraines a month and that don’t count the days after the migraine starts. She also thinks that when I go hide from everything I was wanting to be lazy.

Most mornings I wake up with a headache. I start to move around and can tell if it’s going to get worse or better. If my pain scale is a 5 or below I will take my meds and set up and wait for it to go down and proceed with my day. If it’s 5-8 I will take my meds and put on cold gel packs. I have one for my neck and eyes. I also put on a neck brace. I have found it helps with my migraines. My neck will hurt really bad before and during a migraine. If it’s 8-10 on the pain scale I take my meds and head to the ER. The ER in my town is so slow that if I didn’t take my meds before going I think I would die before they can in to help me.

One of the hardest things I have found with chronic migraines is the depression. Having to stay away from noise and light and smells usually means you are alone. I have missed out on a lot of family time because of this as well as work. If I can be up working I have found I am a happier person. My doctor has me on antidepressants but that doesn’t help me missing my family and time with them at work.

If I could give any new camera to this disease seven device it would be this. Learn all you can about this and try to educate the people around you about it as well. This will help everyone be on the same page when it comes to having attacks. Try everything you can to prevent them from happening and try everything that helps. The more things you have that help you hopefully will lessen the pain you endure. Ask other people that suffer from migraines what helps them and what triggers them. I have yet to find anyone who suffers from any illness to not give advice and try to help their fellow person out.

The people who don’t suffer migraines I would try to tell them one thing. Be kind and compassionate. Don’t add to the stress and pain we already are suffering from. Granted everyone worries about money. We may worry more about it. Because there is not a lot we can do to help our situation. We already feel helpless don’t make it worse. Anyone who suffers from migraines will tell you they would rather have a long day at work then have a migraine. Also fighting a migraine is very taxing on your body and mind. We sleep more because were trying to recuperate from them when we are having a migraine attack and you ask us a question and we just can’t spit out the answer like a normal person does not mean that we are slow. No one can really think when they’re in a great deal of pain. Don’t tell us stuff like taking an Advil and you’ll be fine, or it can’t be that bad, or you don’t look sick or don’t dwell on the pain. You wouldn’t tell someone that who has a broken leg when are you can see is their face.

I have learnt a lot having this disease. The most important thing I have learned is to be kind and compassionate to everyone. When someone says they are in pain don’t dispute it. They may not have as high of pain threshold as you do in that area. Their pain is no less than yours.

Thank you Will for sharing your story. As a fellow migraine sufferer I do hope that your next migraine isn’t to bad. You are an overcomer, keep pushing forward.

Hopeful always.

ūüíóAnna

Gratitude Attitude

img_3991It’s true practising gratitude is an attitude.¬†Each day I give thanks for what I do have. Instead of focussing on what I do not have.

It is true if people in general just talked more about what they were grateful for, the world itself would seem to change and glow in a glorious white light. Yet there seems to be this looming dark cloud that following many around. This is evident on social media in addition to¬†people’s self talk.

If you check a Facebook status, Instagram or Twitter many have a similar theme.  People expressing their frustrations with the world, their discussed with other human beings, everything bad that happened in their day. This is not always the case there are gratitude believers out there and people practicing being grateful daily. However, it seems to be overwhelmed with this negativity that seem to drift around on social media. We are all guilty of it we have all posted something negative.

I search through all the posts to find gratitude attitude post. Post that have a similar theme, being grateful for life. ¬†You may hear it all the time, ” there’s always something to be grateful for,” and sometimes those really happy people¬†are super positive about anything yes they can get on our nerves. But why?

The fact is there is truly something in each day to be thankful, or grateful for. Whether this thing is smaller large that is up to you. I know for myself personally daily I am thankful and grateful for a roof over my head, clean water to drink, food on my table, clothes on my back, a warm bed to sleep in at night, cuddly cats, people that love me, respect me, and value me, and my opinion.  Some of these things to my name would seem like just ordinary things, yet why not be grateful for the fact that these ordinary things that are available to everyone in the world are a blessing.

Do you have a grateful attitude sometimes takes work. This means telling yourself that every day you need to be grateful for something. Being grateful in general is a good thing. Life itself is simply a gift and for that matter I am blessed with life. I know that my journey is different than others.  I live with multiple diseases that are rare and complex and yet there is always something to be grateful for. I am even grateful for the pain that I have, because without the pain  perhaps I would be a different person.

Life ¬†does not have to be a negative experience, things do you happen to ask yes. Whether these things are evil for other people or illness. ¬†Try not to harbour hate towards others. Learning to forgive other people for the wrong as they have done us takes time. Holding a grudge only hurts you, don’t be bitter, become a better person. ¬†Remember forgiving is for you, because a grudge only hurt you, ¬†forgiving and forgetting; forgiving is letting go and realizing that you can’t change the past.

Today I am grateful for the people that forgave me, I forgive those who have wronged me, who have hurt me,  and those who left me when I really needed them. I forgive for me.

Wishing you all the best my fellow disease warriors.

You are not alone.

Hopeful and grateful always.

ūüíóAnna