A Day Off By Stephanie Heads

IMG_5439

A Day Off
By Stephanie Heads

I want to sit and read my book
I want to escape the pain
I need to be left alone for a while
To sit and go insane

I can’t face the fight today
And tomorrow will be the same
I’m anxious and exhausted
I’ve got several demons to blame

I haven’t slept for ages
I drift in and out of dreams
I’m fighting but getting nowhere
Or at least, that’s how it seems

I’ve taken all my tablets
I’ve breathed deeply, in and out
But I’d rather go real crazy
Be loud! And scream and shout!

Time to bend and break a bit
I can’t always plod on through
I’m an angry, anxious zebra
Got to do what I need to do

No, I don’t wanna talk about it
Don’t wanna be prodded and bent!
Don’t wanna deal with EDS today
A flexible demon I really resent

So I’m not gunna face it today
Gunna ignore it tomorrow too!
Zebras need a break sometimes
A quiet day off or two

I don’t want sympathy or “oh poor you’s”
Just some understanding when I do what I do.
Just get it when I sit and cry
Or when I lash out at the pain
I get tired of going through this
Every day and over again!

Just give me a chance to get my shit together
And to get my head screwed on
I’ll be back before you know it
Standing, smiling, zebra strong!

I can’t always be a brave gal
I can’t always push and fight
Sometimes I need to hide away
To rest and put things right

So please be patient and aware of things
I’m doing my very best
Don’t worry that I’m giving up
I’m just chilling and having a rest

And if you see another struggling
Looking tired, slow and sad
Be patient and be kind to them
They might feel really bad

One day you might feel awful
And need a helping hand
I’ll offer you my spoons to share
And I’ll get it, I’ll understand.

We all get worn out sometimes
Sometimes we’ve had enough
We can stop and rest but we must never give up
Coz we’re made of stronger stuff!

❤❤❤❤❤❤❤❤❤❤❤❤❤

Check out Stephanie’s other poems and blog posts on her page here https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

 

Everyone’s Disease Affects Them Differently

IMG_5376

As much as I find it awesome when I see someone share something about one of the diseases or disorders I have, when I read how much they are accomplishing in the publics eye it makes my heart hurt a little. I am not the same as the person you have heard about. I live with one similar disease and that disease affects me vastly different.

I can not do particular movements because of the preexisting damage to my cartilage, tendons, ligaments, and blood vessels. This is only due to one of my illnesses. I am vague most of the time trying to explain my experience, I have found the broad term of being chronically ill can help others to understand.

However, I am not like everyone else that has, Ehlers danlos syndrome, dysmotility, postural orthostatic tachycardia, chronic migraines, perniosis, mast cell disease, cancers, pancreatitis, GERD… etc… Simply because I have many diseases/disorders my body and my experience are different. Please don’t compare me to someone you know that may have one or two of the things I have.

There are different spectrums of those affected, not everyone with EDS dislocates everyday like I do, not everyone with EDS can have kids (I will never be a mom), not everyone with dysmotility can eat everything out in front of them, not everyone with POTS blacks out, not everyone with mast cell disease goes into anaphylaxis, the list could and would take all day. Some people are so mildly affected they can continue to do their everyday normie life with no illness interruptions. Where others are permanently discharged from the normie life style.

The point is do not lump me in with one or two people you have heard of that have any of what I have. My experience is mine and mine alone. I have never met another person on the internet nor in person that has all that I have, and I possibly never will.

Please be understanding that my case is different for the fact I am deteriorating, not everyone with EDS, POTS, MCAS, and everything else that ails me will end up like me. My diseases are not on the surface unless I rash, dislocate, or begin to vomit because my throat is backing up (literally backing up, and will not allow me to eat), EDS is ravaging my body, not everyone with EDS will be like this.

Seeing people with similar diseases/disorders do things I can not do because it could end me makes me frustrated, I am happy they can experience it and happy they are not like me. It hurts when someone near and dear to you says, “I know someone with EDS to and she has children, that means you can do it to.” “Stop limiting yourself, you can do whatever you put your mind to.” I can simply put on my normie mask and agree, but the broken part of me that looks for understanding, yet feels lost and confused as to the lack of understanding. The lack of empathy, the lack of tact when life is ripped away from you by illness.

Understanding anyone with chronic illness means you must be open-minded. You must know that someone who is chronically ill is trying the best they can. They maybe stuck in depression and feeling abandoned by their loved ones. Don’t give up on them they still need someone to show them someone cares. Not everyone who is chronically ill gets to the place of acceptance. Don’t rush someone’s journey to get them through the grieving process, they need to come to their own realizations themselves.

Everyone’s disease is different, just like the same diseases can affect everyone differently. Please keep and open mind always. Please keep your heart open for those of your loved ones who are dealing with illness. Sometimes just offering an ear to hear can help. “To listen is to love.” -Nathan W. Bingham

Hopeful always.

💗Anna

Please feel free to check out my previous blog post about “Normie Guilt,” here https://annawerrunblog.wordpress.com/2017/06/04/normie-guilt/

Normie Guilt

IMG_5336.JPGPerhaps calling someone with no illness a normie is unkind. This is not my intent. People have called me a “sickie” before because they didn’t understand my chronic illness. We all have our journey, please understand this is a part of mine.

What is Normie Guilt? Guilting someone into doing something is a form of manipulation, when this is done by someone that has their health this is called “normie guilt.” I understand that people who aren’t sick tend to think they are helping by repetitively texting, “checking in,” or “encouraging,” us to get out and enjoy our sick lives.

The difference between encouraging us the “chronically ill,” to get out and enjoy our lives and do what we want. And the wanting us to spend our spoons on you are two different things. Now it’s not that chronically ill people don’t want to spend their spoons on their loved ones, whether it’s a friend, family member or spouse, it is simply when you have a limited supply of energy you want to be able to spend that energy on things that you love to do. For me a few of these things are crocheting (when my fingers, wrists, and shoulders are not dislocated, because sometime my elbow destroys that dislocation party), other times, it’s paintings, or spending quality time with a family that I dearly love and miss immensely. Now if someone comes to me and says repetitively that I should be taking more time for myself and doing things that I love, when I am all ready doing this, this is when (the chronically ill person) realize that someone else has their own motives. It would be a lie to say that no one had their own motives for how they acted or interacted with others

The comment as much as I am sure it is heart felt and full of love saying to me to “save all your energy for this event,” is putting pressure on me. Whether this event is something I want to go to or not. Sometimes yes I do push myself much more than I should, that is my choice and I am the one that deals with the blackouts, anaphylactic reactions, the heart palpitations, the chronic dislocations and so much more that if I listed it would possibly make the reader sick just from reading it. The point is please don’t push me, don’t “expect” me to do or be something you thing I should be. I will do what I can do with what I have been given. I am not intentionally ignoring you, I am sick I am fighting for my life daily through things that would make most people’s head spin right off like a top. I want to be at your event, your dinner, your party, your house and spend time with you. I will do my best, but should I cancel please don’t “normie guilt,” me when you don’t know the challenges I face.

I don’t get to spend all the time I want to with my friends because I’m not a super hero. But I do get to spend some time. I know it would be nicer to each other more often, but I am sick and I do need time to rest. Regardless of who you are in my life I will do my best to play the normal game (normal game meaning I will try to act normal) the fact of the matter is the list of things I am living with is growing and none of it is fixable.

I will always do my best to keep a smile on my face, I will always have hope in my heart. Sometimes life gives you life threatening conditions for a reason. To those of you whom love and support me thank you. For those of you learning about my illnesses, please take time to place yourself in my shoes. Being diagnosed with over fourteen things changes you. I still haven’t told my whole story of the different diagnosises I have received and I think I would like to share that here on my blog, but that is for another day.

To all of you living with or loving someone who is chronically ill please do not tell them how to spend their energy. No one really likes being told what to do. When doctors are telling you what to do having others do it to you is hurtful even if you have the chronically ill loved ones best interested at heart. Please respect me and my decisions, you may not agree with them, I may not agree with all yours. I am truly living to the best of my abilities.

Don’t set unreasonable expectations because my illness is unpredictable, guilting me of anyone else with chronic illness will not help us it makes us feel worse about a situation we can not control.

Thank you for your time. Please take care of you, you matter and do what is best for you and your energy. Don’t let others guilt you into manipulation.

Hopeful always.

💗Anna

Please feel free to check out my previous blog post, “Abuse And Chronic Illness.” https://annawerrunblog.wordpress.com/2017/05/18/abuse-and-chronic-illness/

Abuse And Chronic Illness

IMG_5298Just because you are sick does not mean to should settle for being treated badly. Some people like to look in from the outside and make assumptions. “Your life must be perfect.” “Your marriage is so amazing.” What do others truly know about your private life? Nothing other than the theatrical performance you put on for them. What they choose to see or believe is what they think the reality of a your acting expresses.

Just because someone stays with you because your sick doesn’t mean that person is perfect or completely selfless. Sometimes, in some people’s lives, their spouses are abusers. The healthier person can form resentments towards the ill spouse. These resentments built up, comments begin to be said as little jabs here or there, these eventually snowball into larger more hurtful words. Chronic illness is hard on the person affected and those around them.

Just because your loved one is sick does not give you the right to verbally, or physically abuse them. Should you find yourself resenting your spouse for their illness, I urge you to get help for yourself. If you are a spouse, close friend or family member of someone who is sick and you know you are abusing them check yourself. Seriously, take a minute to ask yourself who are you really angry with? Blaming someone who is sick for being sick is illogical. Everyone deals with illness differently.

Someone who is chronically ill didn’t ask to be ill, they didn’t wake up one morning and say, “I have decided my life goal is to be sick and purposely disrupt the lives of others.” Before anyone is chronically ill they generally have the normie (someone who is not sick) mentality, living life to a good old age, accomplishing things they set out to do, having kids, white picket fences, walks on the beach with their spouse and countless vacations.

The sad reality is there is spousal, elder, family and friends that abuse and take advantage of people close to them who are sick. Abuse in these relationships stem from resentment. If you are resenting an illness you are resenting something that someone can not control. Yes diseases, illnesses, can and do destroy the physical body, what good is it to destroy the mental well-being of someone who is all ready suffering from physical ailments.

Denial is something that abusers love to live in. They will deny the fact they are abusing a loved one because they themselves do not view their mocking slander as harmful. These disillusioned abusers will also convince them-self they are justified in any verbal or physical abuse, because the resentment fuels their actions.

Not everyone’s relationship turns abusive but it is important to know that no matter how sick you are, you don’t deserve to be mocked for being ill. You don’t deserve to be treated aggressively, and verbally assaulted. Being battered and beaten physically is not acceptable behaviour towards anyone who is sick or healthy. It is not your fault you are sick, chronic illness happens. You deal with so much all ready. You don’t need to deal with being abused on top of it.

Please know you can reach out for help. Some people chose not to and that is their choice there is nothing we can do to change that. Please be kind and respectful of others and their decisions, we truly don’t know the full story. Not everyone that is abused will come forward or talk about it. Standing up or yourself and your rights is key in finding a happier you.

Thank you for reading my little blog post about abuse and chronic illness. Take care of you. You are worth it.

Hugs, and hope always.

💗Anna

Nicole Her Story And She Needs Our Help

IMG_5280

MCAS (mast cell activation syndrome) is a immunological disorder where mast cells are released and cause chronic symptoms including and not limited to anaphylaxis. Learn more about MCAS here http://www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/

Ehlers-Danlos Syndrome is an inherited connective tissue disorder that causes a variety of symptoms, affected individuals can be either mildly affected or severely affected and become disabled. Learn more about Ehlers-Danlos here https://ehlers-danlos.com/eds-types/

POTS (postural orthostatic tachycardia syndrome) causes an abnormal rise or fall in blood pressure when someone stands up. POTS can cause someone to pass out, you can learn more about POTS here http://www.dysautonomiainternational.org/page.php?ID=30

Nicole has been diagnosed with EDS types 1, 2, and 3, because of EDS she has complications such as POTS, and TMJ. Nicole lives in Chicago with her mom and is need of help to get to see a doctor that costs around $1500 per visit. The doctor she needs to see is the EDS specialist in the USA. At the young age of 3 Nicole would tell her mom that the left side of her body being in pain. Doctors thought I had an ear infection and prescribed cefaclor (an antibiotic used for ear infections) they gave her a dosage amount that was three times higher than normal.

Her body rejected the medication leaving her paralyzed from the neck down. This reaction was due to MCAS (mast cell activation syndrome) but didn’t know this at the time. “No one knew at the time I had EDS, POTS, and MCAS, they told my mother to start looking for a casket.” Nicole has always caught infections easily and was a sickly child.

Nicole’s mother took her to a place where fifteen students stared at Nicole trying to put the puzzle pieces together of what was happening to her. Nicole was still paralyzed from the neck down at this point and every time she would eat she would vomit. Her urine would turn into a jello like texture when she would go to the washroom. Three months of vomiting up food and Nicole it’s a miracle Nicole is alive today. She was on IV’s everyday she was vomiting what looked like a black substance in addition to blood. Her red blood cell count was through the roof leading doctors to believe this is Nicole’s autoimmune disease presenting itself.

She continued her life as regularly as she could after she gained back some mobility. At the age of 13 and into college Nicole was a victim of bullying. She attributes this to being different it was hurtful, Nicole shared about being bullied, “being bullied led to what we know now are flare ups.”

Another time I ended up paralyzed when the doctors gave me another drug called omnicef the doctor didn’t listen to nicole and gave this drug to her anyways. “I ended up with a large golf ball sized lymphnode on the left part of my neck which doctors extracted. Still doctors couldn’t figure out what was going on.”

Nicole recalls, “people would call me a liar and a hypochondriac. People would tell me to suck it up and that there was worse out there. While I was dislocating every joint and fighting chronic pain everyday.” A problem with EDS is the micro tearing in the ligaments that happens overtime.

“I started to experience ‘highs’ of my blood. I started to pass out in school. It was happening around 6-8 times a week. I would pass out and not know what was going on because all of this happened before my diagnosis. Doctors thought I was bipolar, depressed, has anxiety, and a hypercondriac, so they put me on meds. Been through all sorts of different meds since I was 13, 13 different meds actually. People were not nice to me and continued to call me names in school.”

Nicole thought for a long time she just maybe arthritis because of her deformed fingers. Nicole had large wounds and bruises on my body, “People thought I was being abused by my parents.” Overtime Nicole realized she had stretchy skin, and she was flexible to the point of chronic dislocations. For a while it seemed that because of Nicole’s problems she wouldn’t be able to graduate school. “I was put into a special ED class and I loved it. I graduated and went into doing hair.”

Since doctors believed that bipolar, depression and anxiety were the root of Nicole’s problems they put her on dangerously high dosages of celexa. “The dosage was so high one doctor said I should be in heart failure from it.”

“I love hair dressing and decided to get into it. I am good with hair and colours.”

Over time around the age of 19 Nicole noticed the severe pain in her jaw. “People would avoid me in hair school because they thought I was a complainer. I tried to explain to teachers why I was missing school. At this point I had been sexually assaulted and couldn’t figure out what going on with me. I lost all my friends. I decided to save up my moment at age 24 I was diagnosed.”

Nicole had ankle surgery to repair the torn tendon in her ankle. “Doctor said he had never seen a leg like mine, the skin wouldn’t close, my ankle needed to be stapled crisscross, and had to be re-stitched three times.”

She began to realize she was more flexible than the average person. Flexibility maybe a new fad or an old one that is back in the lime light, however, being more flexible with something like EDS makes you rather clumsy. It took a long time to get a diagnosis, my family and I found out at 24 I have EDS types 1, 2, and 3 and POTS. “I have learnt I need to tell doctors exactly what is going on. And make sure they know to not give me any drugs related to those those two drugs that have caused me to become paralyzed.”

Nicole needs our help to get to a doctor to that knows EDS. She is in need of around $8000 let’s help Nicole reach her goal. Us fellow zebras need to stick together.

Nicole shared with me, “My inspiration for GoFundMe is to become the face of EDS in Illinois to help other doctors become educated by the superior ideas doctor and it could also benefit other zebras in the area to get at least some type of treatment instead of doing completely nothing. I want to be able to see doctors in Illinois to give us a chance or some type of treatment because if dr. Chopra has contact with my Dr he can direct the doctors in Illinois to help other people in Illinois and what to do because he’s the founder.”

Nicole you have been through a lot and you are a tough cookie. I am honoured and blessed to call you my friend.  I am hopeful for you to get the help you need. I give you permission to use this writing on your gofundme. Please link it to the blog post. You aren’t alone. Us zebras need to stick together.

You can donate to her gofundme here https://www.gofundme.com/nikkis-med-testingresearch-funds

Hopeful for you always.

💗Anna

5 Different Types Of People You’ll Meet When You Are Chronically Ill

IMG_5265There are five different types of people who come out of the wood works that when you are chronically ill. The different types of people are the fixers, pitiers, manipulators, the indifferent, and caregivers.

A fixer is someone who goes ahead and makes decisions for you when you don’t ask them to. This would include cancelling appointments, showing up unannounced, suggesting things to the point where they’ve beaten it to death, and they tend to get frustrated when you ask them to stop, or to mind their own business. The difference between a fixer and a caregiver is that a fixture thinks that the newest latest trend in healthcare will fix you. Whether this is volcanic ash, mushrooms, infused juices, oxygen therapy, hydration therapy, and the list goes on and on. The point is a fixer thinks that they can fix you. Where it really starts to frustrate me is when someone suggests and suggests to me things over and over again and they explained to me that it will fix my illness. Now the problem here is I don’t have just one illness and I don’t have just one complication I have multiple of both. Having someone tell me that something they discovered on the Internet or tried themselves is going to fix me it’s highly unlikely unless they have all the diseases that I have. And I’m not mocking or condemning any holistic approach to getting better. What I am saying is I have tried my fair share of stuff and have had adverse reaction’s. It is not safe for me to be putting new things into my body that I have not tried and could mess with my medication. Prime example here is the charcoal toothpaste I tried, it however absorbs and cancels out some of my meds. Not something listed on the label is that Charcoal actually absorbed and neutralized my medication. So this lovely thing that is so good for so many, is not something I can take because of the extensive list of my medications. There’s nothing wrong with being a fixer I understand why you’re a fixer. But as I have said to countless fixers over the years, please stop trying to fix me because I’m not a broken vehicle that you can replace a part in, I am not an experiment for you, I am my own person I can make my own decisions so please back off. I mean that in the most loving way because if you keep pressuring me into trying things that you want me to try it’s never gonna happen, and can eventually lead to friendships, and relationships breaking down.

Pitiers people who only feel sorry for you. I myself despise pity. It’s a big reason I didn’t tell people I was sick for a really long time. When I was first diagnosed with cancer the pity started flooding in. There were many comments made by people during that time that made and broke our relationships. Pitiers are the types of people that look down on you, they view you as sick, weak, and only can see you as an object of their pity. Over hearing others say, “at least your not as bad off as Anna,” is not only hurtful but it also shows the pitiers will us you to lift others up. In the sense of throwing you under the preverbal bus. I have also overheard people say, “poor Anna another diagnosis, of course she has that wrong with her too.” I understand some people don’t know what to say, however, the biggest and most obvious sign of a pitier is their eyes. You can tell by the way they look at you they are taking pity on you. This is why I didn’t tell people all of my illness journey until the last few years. I truly will never like pity, I still get pity looks. I don’t pity myself and I don’t need your pity.

Manipulators are those who either enter our lives after being sick or are with us from the beginning. Manipulators make you feel bad about being sick. They try to get you to do things that they want you to do and this usually involves you doing things for them. Don’t get me wrong I fully believe in helping out your fellow human and being a friend No matter how sick someone is. But when people manipulate you and try to convince you have to do everything for them,it’s time to reevaluate. Manipulators are toxic in any relationship, in my experience they can be deadly when you are chronically ill. It is wise to evaluate your inner circle regularly. I contantly take an inventory of those around me, I would encourage you to do the same. People who lift you up, encourage you, those are who you should keep in your life. If those you are wanting to keep in your life are manipulators please reconsider. Realize what a manipulator is, how they treat you, and how they could drastically affect your health in a negative way. I have been manipulated before. One of the signs of a good manipulator is guilt they leave in their wake. Manipulators do not have your best interests at heart, they are doing what they want to do for them and their own well being. Cutting a manipulative person out of your life maybe hard, they will tell all those around them that you were and are the bad guy. Hopefully others will eventually see what you saw. Don’t give up on you, you deserve better.

Indifferent people are those in your life that don’t necessarily care that you’re sick, and don’t really want to know what’s going on but they will listen. They seem to have no opinion about your illness, and also don’t understand the limitations of it. You can either view indifferent people as good or bad. Some people like to keep these kind of people in their lives because they almost in a way continue to treat you like you are healthy, they may give you a false sense of encouragement to continue to do things that doctors have said not to do. Please be wary of the indifferent they do tend to keep their own agendas over yours.

Caregivers are those who stick with us. They pull along side us as our health disappears. They remind us we are loved, we are important, and we deserve good things. Caregivers are not just family members, spouses, or lovers, caregivers are also true friends. True friends holding a greater understanding for their chronically ill friend. A caregiver does not try to fix, they do not pity, they do not manipulate, and they are not indifferent. A caregiver makes up for all the negative aspects of others. A caregiver always needs a break, not to hurt the person they care about, but to recharge. Some people will look at a relationship with a chronically ill person as a burden, as gaining a dependant.  Not a caregiver, they view a chronically ill person as a person, they have empathy, they see them for who they are and not as a illness. A true caregiver will seek out the love of their life and fully embrace that chronically ill person, body, mind, and soul. Illness does not make you unloveable. A caregiver will step up to the plate and go to bat for the person they love,p. A caregiver is a one of a kind person. A special, selfless soul, that truly wants to offer love, and help. They respect the other person wishes no matter how hard it is. These people do exist. They are all around us. We all deserve love, happiness, respect and hope. Caregivers are amazing people and they are all those who stick with you. It’s because they care.

There are all types of people in the world, it’s important to know what they kind of people you are dealing with. You know there is nothing wrong with being sick, but don’t let yourself be pushed around by others because you are sick. You matter. You do have great worth, you deserve love, and respect. Do not quit on yourself.

Hopeful always.

💗Anna

May Is EDS Awareness Month!

IMG_5037May is Ehlers-Danlos Syndrome awareness month. What is EDS? It’s a connective tissue disorder that is inherited (passed down from generation to generation). EDS affects, skin, joints, ligaments, muscle, tendons, GI track (stomach), blood vessels and organs. Connective tissue is found in everything. People with EDS lack the vital part that helps keep them glued together.

Why a diagnosis is so important! If you are living with EDS you may not realize it, and EDS can cause internal organ problems. I am not saying this to freak you out, but if there is stuff happening due to EDS you may need to be treated and knowing EDS is causing problems is the first step.

EDS is more than skin and joints. I am affected by EDS in a multi-systemic way. You aren’t alone, don’t fear the diagnosis, embrace it, after you grieve the diagnosis and change in your life please come and join me in acceptance. I will be here for you all the steps of the way. No one should have to live alone in their disease not ever.

Ehlers-Danlos Syndrome affects each person differently. There are various types of EDS, the ones I know a bit about are, hEDS, cEDS, vEDS, kEDS, sEDS, dEDS. Please note this isn’t a complete symptom list of each EDS but more of a short overview.

hEDS is Hypermobile Ehlers-Danlos Syndrome. People with hEDS generally have hyperextendable joints, mild skin hyperextension, abdominal hernias, abnormal stretch marks, atrophic scarring, prolapses, chronic wide spread pain due to dislocations and subluxations.

cEDS is Classical Ehler-Danlos Syndrome. cEDS is diagnosed through a genetic test. People with hEDS generally have hyperextendable joints, skin hyperextension, atrophic scarring, chronic joint dislocation and subluxations.

vEDS is is Vascular Ehlers-Danlos Syndrome. vEDS is a life threatening disease. vEDS is diagnosed through a genetic test. People living with vEDS can have the following, chronic joint dislocation and subluxations, congenital dislocation of the hip, rupture of the hollow organs, rupture of the aorta (aortic aneurysm), thin translucent skin where you can see the veins in the neck and chest,

kEDS is kyphoscoliotic Ehlers-Danlos Syndrome. kEDS is diagnosed through genetic testing. People with kEDS generally have the following hyperextendable joints, skin hyperextension, kyphosis or scoliosis that progress and can eventually cause breathing problems, severe hypotonia at birth, and fragile sclera.

spEDS is spondylodysplasia Ehlers-Danlos Syndrome. spEDS is diagnosed through genetic testing and patients with this generally have the following, soft doughy translucent skin, progressive short stature starting in childhood, poor muscle tone, and bowing limbs.

dEDS is dermatosparaxis Ehlers-Danlos Syndrome. dEDS is diagnosed through genetic testing and patients with this generally have the following extreme joint hyper-mobility, loose sagging skin, easy bruising, and hernias. This form of EDS can lead to blood clotting problems, and damage to internal organs.

Since EDS is not curable all that can be done is preventing further injury to the joints, bracing, physiotherapy, counselling, and other palliative care options.

It is important to know you are not alone. There are others like you living in this world, we can make a difference with our collective voices.

I hope you enjoy the first EDS slide show I did with other people in hopes of raising awareness for EDS. https://www.youtube.com/watch?v=H444kceT_0c&edit=vd

We all matter. Please reach out me to chat about your journey. I will gladly listen.

Hopeful always.

Anna

Undiagnosed A Poem By Anna Werrun

IMG_5032
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.

Poem Never Break By Anna Werrun

IMG_4998
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