Undiagnosed A Poem By Anna Werrun

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This short poem is dedicated all of those living undiagnosed, into struggle living undiagnosed for many years. There is hope at finding the answers. There is hope things can change. Don’t give up.

To all of those living undiagnosed and feeling that feeling that you are alone. You are Not alone. This looks movie looks amazing. https://www.undiagnosedfilm.com #undiagnosedfilm

If you need a community of people going through something similar please join the group on Facebook, it is a safe place to share your journey! https://www.facebook.com/groups/1811142799206420/?ref=ts&fref=ts

Undiagnosed
A poem by Anna Werrun

Undiagnosed
abandoned
Forgotten
Name striken from my records
Labeled as something else

No diagnosis
No doctor to help
Only confusion.

Searching for answers in this answer driven world.

No answers .

Left abandoned
To fend for myself
To fight for me right.

Alone
No resources
Being told I’m loosing my mind.
Am I loosing my mind!?
Is all this in my head?

As soon as I think it’s all in my head
throbbing pain circles and envelopes me.

It’s not a dream,
I am not insane.

I am sick.
I need help.
Treatment!

“How can I treat you if I don’t know what’s wrong with you. ”

Slipping,
Reality,
Relationships,
Changing,
Evolving into things I don’t understand,
People change into creatures I do not recognize.

Confusion,
Fog of tears,
Panic,
Please help me.

Undiagnosed,
Misunderstood,
Please be aware of those living undiagnosed.

Do not give up,
Hold onto hope.
You do not need to do this journey alone.
There are many like you search for answers.

Grip onto hope,
Never let go,
Keep on hoping,
Hope will carry you through.

Be your own advocate,
Do not give up on you.

I can do this,
I wil do this.
I am strong enough to make it through.
Hopeful for you.

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Poem Never Break By Anna Werrun

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Never Break
By Anna Werrun

Can I break it…

Throw it away and be done with it?

What’s the point of it.

Slipping,

dissolving,

Cracking,

So familiar…

Letting go.

No…

Repress.

Repress…

Digress…

Let go.

Is this the end of me?

Letting go, fall, heart pounding, darkness.

Broken

Bleeding

Pitch

Ebony,

Alone.

Why?

Am I here.

Alone.

Alone.

Not meant to be here…

Not meant to be not alone.

Not meant for loneliness.

Reaching out to you.

Hanging in,

Hanging on,

Hopeful till the end.

Express, do not digress.

Unburdened,

Free,

Hopeful.

Chronic Sitting Shoes


#chornicsittingshoes is a hashtag I created in hopes of inspiring others to come and join me on a little journey with shoes.

I love high heel shoes. Love them, due to dislocating ankles and other large joints wearing them can be more than challenging. I feel better when wearing high heels. As though I am getting dolled up to go out somewhere. Recently I was in the hospital again due to complications associated with my mast cell disease, in addition to my POTS and EDS.

It is a simple little pick me up to crawl to the closet open the door and look at my shoes. Now some shoes haven’t ever been worn outside because I am after all chronically ill and sometimes I can’t get to events to wear them.

This is why I thought of creating this hashtag #chronicsittingshoes we don’t need to give up something simple like shoes. We may not be going to prom, we may not make it to graduation, so why not enjoy your shoes in the comfort of your own home.

After I have stared at my shoes and missed wearing them for a long time I thought, “why not just sit around in them…” That is exactly what I started to do. I would grab a pair and put them on while I am in bed. For me my chronic sitting shoes are nothing to be ashamed of, they are a simple joy in my life and I will not deny myself this simple pleasure.

Join me on social media to bring awareness for rare, complex, and invisible diseases. Please use the hash tag #chronicsittingshoes when you are sharing a photo of your sitting shoes.

I remain hopeful always.

There is always something to be grateful for, there is always something good in each day.

💗Anna

Want to share your story? Please contact me and you can be interviewed for my blog. Here some of the interviews I have done. https://annawerrunblog.wordpress.com/interviews/

I am not my diseases. I am a survivor, a rare disease fighter and I live with invisible illness. My YouTube channel is about me and my journey and how disease tries to rule my life. https://www.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0A

Find me on twitter @annawerrun, on instagram @annaweds, and on Facebook https://www.facebook.com/Annawerrun2

The EDS support page for Victoria that I created after being diagnosed can be found here https://www.facebook.com/EDSVictoriaBC/?ref=bookmarks

You can also find me on Facebook in these groups.
Living undiagnosed? Need a community of people going through a similar journey? Check the group here https://www.facebook.com/groups/1811142799206420/?ref=ts&fref=ts

Did you have thyroid cancer and have a radical neck dissection? Want to meet others facing a similar journey? https://www.facebook.com/groups/151381295386090/?ref=ts&fref=ts

Live on Vancouver island and had thyroid cancer? Check out the thyroid cancer group for Vancouver island https://www.facebook.com/groups/1869139253374320/?ref=ts&fref=ts

Live in Calgary and had thyroid cancer? Check out the thyroid cancer group for Calgary https://www.facebook.com/groups/1434621046596821/?ref=ts&fref=ts

Live with EDS and are in the Calgary area? Looking to meet others living with EDS? https://www.facebook.com/groups/1904695566468855/?ref=ts&fref=t

Living with chilblains aka perniosis? There is a group for you! https://www.facebook.com/groups/447397005596487/?ref=ts&fref=ts

It’s important to know you are not alone. There is support here and you are welcome to join groups and know you can share your journey.
Anna Werrun

Interview With Angela Arndt

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Join Angela Arndt as she shares her chronic illness journey living with EDS, and fibromyalgia.

Learn about EDS here https://ehlers-danlos.com/what-is-eds/

Find information of fibromyalgia here http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243

Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health?
My name is Angela Arndt. I’m in my fifties and I have Ehlers Danlos Syndrome and fibromyalgia.

When did life change for you?
Life first changed for me after I began teaching school. As a first year teacher, I was warned that I would get everything the kids would bring in, but when I got sick, I couldn’t shake it. I was newly married with two step-children and had worked so hard to get my Masters degree, I’d worn my immune system down. The school building wasn’t airconditioned and did I mention that I lived in South Carolina? My classroom was on the third floor and I ached every day, climbing the stairs. I didn’t know what was going on with my body and I had to leave mid-year. It was five years before I could work again.

What was life like before diagnosis?
Since EDS is genetic, I’ve always had health issues. I can remember being at summer camp, limping because the bones in my foot was hurting. My doctor told my mom I might have a touch of arthritis and to keep away from concrete floors. Not sure about the logic of that.

Because of my age, people didn’t know about fibromyalgia or EDS. I’ve been told that I’m faking it, depressed, anxious, should go have children (yes, a doctor said that), and had chronic fatigue syndrome (or “yuppie disease” as it was called then). You can imagine the looks, the whispers, and the “helpful advice” I’ve received.

How has your diagnosis changed your life?
The title, “disabled,” regardless of what disease came with it, changed everything. Because I couldn’t take care of myself, we decided not to have children. My Masters degree is largely wasted, although I am writing a little, as I’m able. I made more money than my husband, so our lifestyle changed drastically.

Please describe the best you can a day in the life of you?
I get up at 5:30 a.m. because it’s my best time to write. Hubby gets up to take the dogs for a walk because I’m barely able to move. I take my medicine, then read my Bible, pray for my family and friends while I wait for the pain to subside. When I’m able, I get a cup of coffee and then write, answer emails, update Facebook, etc. My mother moved to our town after my stepfather passed away, so we incorporate her doctor visits and medicine refills in with mine. My good hours end at one and I usually go back to bed at two. When I get up, around three, I’m in pain again and I can do very little except watch television.

The pain I feel each day is constant, even with the medication I take. While my lower back, hips, and knees hurt most of the time, my shoulder and neck is less constant, but just as intense. I also have migraines that usually last a few days, but as of today, I’m starting my fifth week with this one. I’m going to see a neurologist at the end of the month to see what’s going on.

What was/is the most challenging thing you have faced because of your diagnosis?
The isolation has been the worst. Even with all the physical pain, nothing can touch the pain of having friends and family who don’t want or care to understand why you can’t keep or make plans. I have family members who aren’t speaking to me because I was too sick to come to a dinner. We don’t invite anyone over because I can’t do housework. Even with the “world wide web,” there are very few who truly understand the pain in my body and my heart over the things people say and do.

Do you find that you can keep up with others?
No, not even my 87-year-old mother.

What would you tell others living with your diagnosis?
To be informed. Don’t rely on anyone knowing everything about your condition. And don’t let them tell you that you’re not sick when you know you are. Like I used to tell my students, you have to do your homework.

What would you like to tell others that don’t live with a similar diagnosis?
Try to be more understanding when someone has to change plans or even refuse to make plans because of their health. There is no way in the world that you truly know how they feel, don’t try to read anything into the refusal, just take it with genuine concern. The Golden Rule is always a good place to start, “do to others as you would have them do to you.”

What have you learnt on your journey?
That doctors are very busy. It’s hard for them to hear everything they need to hear in the ten minutes they see you in the office, especially after you’ve been in their waiting room for over an hour. If that doctor does understand (or want to understand), find another one. Ask for referrals from others who have similar symptoms. Join a support group and do whatever you can to make yourself better. You can’t help anyone else if you don’t help yourself first.

Is there anything you would like to add about your journey?
Just that God can still use me, even as sick as I am. I can still pray and encourage, even from my chair or my bed. As long as I can do that, I’m still a productive person.

Did you want to include a photo of you?
(I think you’ve already gotten a photo, right? If not, just let me know.)

Thank you so much Angela for sharing your journey with me and the world. Support groups make all the difference in ones disease/chronic illness journey.

Hopeful always.

💗Anna

Interview With Laetitia

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Join Laetitia as she talks about her journey living with EDS, Chrons Disease, Dysautonomia, general anxiety, and fibromyalgia. Please be respectful of her and her journey.

Learn about EDS https://ehlers-danlos.com/eds-types/

What is chrons disease? http://crohnscorner.com/what-is-crohns-disease/?gclid=CjwKEAjwoLfHBRD_jLW93remyAQSJABIygGp5DqF38YFhRK-J0zMWJwfiQ5X7vHzt96cjU8aUIeXRxoCyEjw_wcB

Dysautonomia information can be found here http://www.dysautonomiainternational.org

General anxiety https://www.adaa.org/understanding-anxiety/generalized-anxiety-disorder-gad

Information on fibromyalgia can be found here http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243

Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health?
My name is Laetitia, I’m 27, almost 28. I’m married. I was born and live all my life in the South-East of France (so, sorry for my english).
My diagnosis? Ehlers-Danlos (probably hypermobile) and all the associated symptoms (lots of allergies, dysautomia, scoliosis and so on), Crohns disease, general anxiety and fibromyalgia.

When did life change for you?
In 2011. I had more and more pain all over my body, diarrhea all the time. I knew something was changing. I felt that the “healthy” life was over.

What was life like before diagnosis?
As a child and teen, I was quickly tired. I had lots of bruises and poor balance. I fell often. Asthma. I’ve already had lots of food allergies and intolerance. Lots of digestive problems. But I was very active.
At 12, my left knee was very painful. They said “it moves, don’t worry”.
As a teen and young adult, I wasn’t aware about my hypermobility. I’m thinking it’s fun but normal.
At the university, I was more and more tired. I didn’t want to go out at night. I was sick often.
During my PhD (started in 2011), it was worse. Some days, I can’t move but I have to. My family and I were worried. What was the point with my digestive system? With my body and my joints?
For my Crohn, it took almost one year for having a diagnosis (2012). But for my EDS it was another story. In 2012, I was diagnosed with ankylosing spondylitis and I take a treatment for that. But I saw no change and I can’t walk anymore. So I decided to get a cane even if my RI didn’t want to. I can walk.
Years after years, I knew that my AS diagnosis was wrong. My joints dislocated more and more. My pain didn’t match with AS. Something was wrong.
Last year, in 2016, after lots of research, I was going to a very old RI. He thought I might have multiple sclerosis or a neurological problem. I did lots of exams. Again. It’s not that but he confirmed I don’t have AS.
So, I found an EDS specialist in my city. And, at the first appointment, it was obvious for him: I have EDS. My diagnosis battle was finally over.

How has your diagnosis changed your life?
I was sad ’cause having several chronic illnesses wasn’t a good new. However, it was a relief ’cause I can put a name on my symptoms. I know what I have and I can learn to live with.
The EDS specialist prescribed me compression clothes, splints for my finger joints, oxygen and a new pillow.
I bought 4 canes to match with my clothes.
I sold my high heels shoes.
I get the disabled status.
I had to stop working (it was very hard but I have to).
I accept that I need help for my day routine. Fortunally, I have a wonderful husband.
I learn to take care of myself.
We move in another home, ’cause the stairs were killing me.

Please describe the best you can a day in the life of you?
On my best day, I can go shopping with my mom (with my cane) for some hours even if I pay it back for two days. Moreover, I can do some cooking or the laundry. I’m always afraid about the diminution of the number of “best day”.

What was/is the most challenging thing you have faced because of your diagnosis?
My appearance was changing (no more high heels, compression clothes, bruises and so on …) and can’t work anymore. I have a PhD and I’ll never use it anymore.

Do you find that you can keep up with others?
It’s hard, but, I have two marvelous best friends. I can text them “I dislocate my hip, I’ll be late.” without problem or shame. I’m very lucky.
However, with unknown people, it’s very difficult for me.

What would you tell others living with your diagnosis?
Don’t be ashamed. Having a cane and/or a wheelchair is not your fault. You can be pretty and good looking even if you are disabled.
Your pain is real, so take care of you, please.

What would you like to tell others that don’t live with a similar diagnosis?
I’m NOT too young to be disabled. I’m not lazy, I’m a warrior ’cause I live with chronic pain and several chronic illnesses.

What have you learnt on your journey?
I’m stronger than I thought.
Medical errors are a burden.
Even with my disabilities, I can be happy.

Is there anything you would like to add about your journey?
My life is very different that what I imagine when I was younger; but it’s okay. Once I accepted it, it was easier.

Thank you Laetitea for sharing your story with me and the world.

Hopeful always.

💗Anna

Steps May Heads Art Journal


I decided to take up art journalling just over a year ago. My Doctor advised that I take up a new hobby to help deal with both my physical and mental illnesses. I had hobbies, such as dancing and zumba classes that I loved but my worsening conditions meant I had to stop.

I felt lost and hopeless. Uninspired. My mother had taken up art journalling and had told me about how it soothed her, emotionally, as well as keeping her occupied when she was poorly with Bipolar and Fibromyalgia. I was tempted to have a go but didn’t have a clue where to start.

Over a cup of tea my mother said something that made me decide that art journalling was to be my new hobby! She said. . “The great thing about all art is that there are no rules! Your art journal is just for you. It doesn’t have to be fancy. Even the simple act of drawing scribbles or painting a page can be incredibly soothing. Try it and see.” And I did. And my mother was right. Before I knew it I had started expressing my emotions, my fears, hopes and even anger on pages that started out as dots and scribbles and turned into something amazing.

My mother inspired me with her own amazing art journals and paintings and I thanked her by making her pages that symbolised my love, appreciation and gratitude for all that she does for me. For always encouraging me to try something new and reassuring me that no matter what happens, I am strong enough to adapt.

Keeping an art journal has helped me recognise certain issues I have, certain challanges I must face. It’s helped me to come to terms with my EDS, Fibro and BDD (body dismorphic disorder) diagnosis and helped me to celebrate them in a way and accept them as part of who I am.

To anyone out there who is facing hard times, I would so recommend trying out art journalling. It’s a type of magic that allows you to explore and learn about yourself and see how creative and unique you really are and lets you look back on how far you have come. Since those first few dots and circles on a blank page, I have covered my page in zebra stripes that I no longer struggle to accept. Instead I am proud of my stripes. Of my fears that I face every day. We are as unique as every piece of art we make. Be it music, theatre, painting, fashion and all the other amazing things we can enjoy and be part of if we reach out to eachother with our art.

My new hobby has been a life saver for me and has introduced me to some like minded friends. My next project is to hopefully make a colouring book that will raise awareness and possibly money for research into EDS, Fibro and mental illnesses. All these illnesses are very close to my heart and I hope that one day, my artwork and my poetry will make a difference to someone. Somewhere. I remain positive and forever hopeful 💖❤

Thank you Steph for sharing your lovely art journal with us. Remaining hopeful for you now and always. 💗Anna

Check out Stephs blog page here https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

Mast Cell Disease and Me

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There are many aspects of this disease that baffle those around me. Mast Cells cause a reaction in your body when you have an allergy. Your mast cells attack the allergen and make you feel ill. This induces sneezing, coughing, runny nose, and other unpleasant allergy symptoms. Mast cell disease is very different from this and much more complex. It isn’t something that is cureable, there are treatments available, but nothing is gauranteed.

When people ask me what I am allergic to, the answer is a long drawn out one. My body thinks I’m allergic to everything, I am not actually allergic to everything but mast cells in my body have convinced my body that I am.

Confusing? I know.

It’s as though my whole body is allergic to everything. I hive, I flush, I end up with a little less then fifty of Mast Cell disease symptoms. Here are some photos of what it looks like. These are all of me.

Different parts of my face can swell and turn bright red, other times my skin appears scaly like after touching something this is a contact allergy. Please note I am not wearing make up in any of these photos, my lips turn bright red sometimes during a reaction, they itch, and eventually swell. Other times they swell up huge along with my nose without changing colour.

Mast Cell disease can seem at times like it runs my life. Flares happen daily, I can never tell which kind of symptoms I will experience. My symptoms range from Vertigo, vomiting, migraine, and abdominal pain/swelling are some of my hated symptoms. A more complex symptom list I experience due to mast cell disease, chest pains, vomiting, diarrhea, weakness, abdominal pains, rashes, feeling to hot, or too cold chills, palpitations, migraines, fever, tachycardia, itching, joint/bone pain, cognitive impairment, skin on fire, numbness and tingling, anxiety, weight loss, sinus problems, runny nose, mouth sores, ringing in ears, flushing, sweats, rashes that last months, passing out, extreme fatigue, itchy mouth/throat, sore throat, and lowered body temp. These symptoms and all the other symptoms from mast cell disease are debilitating. Many days I am unable to leave the house due to being over reactive to everything, I have a vog mask and RZ masks that help to protect me from some smells.

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My epipen is something I keep on me all times. Mast cell diseases are different for everyone some people only have a few triggers, others have many.

How to better your quality of life living with mast cell disease. First of all avoid triggers, sometimes this can be hard to pinpoint because it may seem something we are fine with end up reacting to the next day. It’s important to not cut everything out, at least in my experience, as this made me super dehydrated, malnourished and cranky (at least this is what I was told by my doctor).

For me smells really impact my quality of life, once I realized this and started wearing my mask out my sinus problems improved. Who would have thought that mast cell disease was giving me chronic sinus infections. This is actually something mentioned on the Mastocytosis Canada page. It is a real and not fun symptom of mast cell disease. Not that any of them are fun. Having an infection can make you feel worse than you need to. I am beyond grateful for a dear friend of mine who gave me my first mask, this mask is something that has saved me time and time again from smells invading my body. Musk is one of the worst smells for me, it makes me sick, I end up with a butterfly rash on my face.

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Do things you love, make sure to enjoy the simplest things because you matter. Your happiness and your out look are key. There may not currently be a cure for Mastocytosis, idiopathic anaphylaxis, and mast cell activation syndrome. There is always hope for a better tomorrow. One where there is time to live life as funny as you are able. Living happy is a perception it’s not owning the most things, or traveling, it is how you express gratitude. It is truly focusing on the good, not ignoring the bad, but knowing there is balance in life. To get to any form of acceptance one must realize the journey brings both good and bad.

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Not everyone will understand your illness. The comments of “you look fine,” will always make my skin crawl. Invisible illness like mast cell need to be talked about. People living with mast cell disease should share their stories in hopes of opening other people’s lives. If we just complain about there being no awareness and we don’t aim to raise awareness, nothing will change. Give your illness a voice for you, and for others like you. You got this. You are not alone.

You can find me on the following social media @annaweds on instagram @annawerrun on twitter and find me on Facebook https://www.facebook.com/Annawerrun2/?ref=settings

Check out my YouTube channel here https://www.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0A

I remain hopeful always.

💗Anna