Interview With Katie

IMG_6900What is Ehlers-Danlos Syndrome https://www.ehlers-danlos.com/what-is-eds/

The questions I asked Katie are bold and italized. Please bare in mind this her journey and please be respectful of that. She lives with hEDS and possible vEDS.

Where are you from tell me a little bit about yourself. What is your name, age, and disease/invisible illness/mental health?

I’m from the US, I’m Katie, I’m (almost) 18 (so just say I’m 18 please), and I have Hypermobile Ehlers-Danlos Syndrome. I was diagnosed in 2010, but now we’re questioning that diagnosis. We suspect that I may have the Vascular type is EDS, or, if you can believe it, that I may have Vascular EDS and Hypermobile EDS.

When did life change for you?

My health was declining at a slow and steady pace throughout my childhood years, but it went spiraling downward in 2014, when I was 14 years old. My first major symptom of EDS (which lead to a diagnosis), was unexplainable, constant, chronic knee pain. That was in 2010.

What was life like before diagnosis?

Lovely. Lively. Luxurious. I used to love running and dancing, but, after my diagnosis, it all had to stop at some point. I was doing damage to my body.

How has your diagnosis changed your life?

It’s made me scared that I may not get treated because I have a pre-existing condition (EDS). In America there was recently a debate about insurance coverage and healthcare laws about pre-existing conditions.

Please describe the best you can a day in the life of you?

I wake up from a night of poor sleep and pain. I get out of bed, dislocating my hips and shoulders and subluxating my knees in the process. Snap, crackle, pop. My bones are made of glass, my muscles are made of… cucumber meat, and my skin is made of tissue paper. I have chronic pain all day everyday. I can barely breathe without a rib dislocating. My hip bones will not stay located to my sacrum. Physical activity is basically but a dream at this point. School is very difficult, as I am so fragile. It’s hard to focus and pay attention because of the distraction of chronic pain. Oh, and food. Although I don’t have gastroparesis (which we’re not even 100% sure of), we’ve done all kinds of GI tests, and they all come back fairly normal, yet I still cannot hold down anything–not even water–without feeling nauseated, or like I have to throw up. Luckily I’m still able to keep down food, even though there’s nausea, but it’s very annoying to feel like I might throw up all day. I also have POTS and VTS, so I faint a lot. And by a lot, I mean a lot. Once or twice in English class, three times in Astronomy, two more times in math… you get the gist of it. Sometimes I can’t focus on my school assignments, not just because of pain, but because of lightheadedness and fibromyalgia brain fog. This can easily lead to anxiety, which I believe also has to do with dysautonomia. And after multiple joint dislocations throughout the day, I go to bed. Laying down exacerbates subluxated-rib pain, though, so going to sleep isn’t that exciting for me, like it is for most people. Usually I wake up in the night with random joints dislocated. Sometimes it’s hard for me to even fall asleep, because we suspect that I have Chiari malformation, and so when anything presses against the back of my head (even my pillow, and especially my neck brace), I get a migraine. It’s yet another night of pain and poor sleep, and the cycle repeats.

What was/is the most challenging thing you have faced because of your diagnosis?

Pain. Lots and lots of pain.

Also seclusion, because I have to stay at home a lot and cancel plans at the last minute. It’s hard for me to go out. School is already enough, as if I didn’t have enough pain on my plate before school even started and all I did was stay home for months on end. Church sadly has to wait until I feel better, which may not be ever. My friends don’t really come to visit me, but that’s understandable because we’re at the point in our lives where we should be moving on and starting fresh. We’re going to college and getting jobs, juggling school along with all of that.

I also struggle with loss. Because of EDS, I can’t run, I can’t dance, I can’t play sports (I can barely walk without pain), I can’t move without joints dislocating, I can’t eat without complications, I can’t have children, I can’t drive (because I might faint at the wheel), I can’t focus on school, and I can’t work. I basically lost my life.

Do you find that you can keep up with others?

Well, if there are accommodations, maybe. I use the elevator at school, and sometimes my wheelchair. I take ADD medicine, but that doesn’t help the fact that my chronic pain is a very big distraction. I can’t drive and I can’t work, so I’d say sort of, but not really. My “privilege” of being homeschooled sometimes, being allowed to eat in class, using the elevator at school, etc. are not really privileges. They are accommodations. Without them, I wouldn’t even be CLOSE to “keeping up” with my peers. I do have a lot of time to sit around and study, though, since I can’t really go out.

I’ve actually had people say to me, “You must feel so lucky that you get to be homeschooled,” and, “It must be nice getting to use the elevator.” No. Just no. You do not want to be in chronic pain 24/7. There’s the door.

What would you tell others living with your diagnosis?

Please research comprehensive prolotherapy. It is a treatment for EDS patients that may work for you. Like chemotherapy does not work on all cancer patients, there’s a chance that it may not work for an EDS patient. But it’s still worth the try. I’ve been undergoing these treatments for almost a year now, and I’ve had a lot of pain relief. I go to Caring Medical in Fort Myers, Florida once every month or two for comprehensive prolotherapy treatments with sedation. My doctor is a great doctor, Doctor Ross Hauser. I’d trust him with my life. In fact, that’s kind of what I’m doing! I’m sedated for these treatments because he basically treats me like a voodoo doll, to sugarcoat it. But it’s turning out to be worth it for me.

Basically, I receive hundreds of injections at each visit. The injections are supposed to help stabilize my joints. These injections can also be for other injuries like sprains and tears. Comprehensive means full-body, and so it’s injections throughout a large part of my body (rib cage and spine), thus using a lot of solution, resulting in around 200 injections in one treatment. The “prolo” in “prolotherapy” comes from the word “proliferation.” That’s the goal of this treatment: to cause proliferation of the connective tissues (collagen). This is done by injecting an inflammatory solution into joints. The temporary pain and inflammation is worth it. The brain is supposed to respond to the pain signals by “healing” that area, which creates collagen! Making our joints like they were before they were worn down! Like when we were children!

What would you like to tell others that don’t live with a similar diagnosis?

Offer support and ask questions.

Specifically, DON’T suggest medications that worked for your friend’s brother’s cousin’s cat’s neighbor. Don’t say, “You’re too young to be sick.” Don’t say, “It’ll get better.”

Please do offer to look up the condition to educate yourself on what it is. I mean, in-depth research isn’t what I’m asking. But if you don’t understand what I say my condition is when I explain it to you the first time, just look it up for a minute and see what it is. Know that a chronic illness patient can’t help their pain, they can’t help that they sometimes have to cancel plans at the last minute, and they can’t help that they’re sick.

What have you learnt on your journey?

“Good health is a crown that healthy people wear and only the ill can see it.”

That’s a really humbling quote that I saw on social media, and it’s a nice reminder to, you know, not take your life for granted. It turns out that it’s an Arabic Proverb.

Is there anything you would like to add about your journey?

I want to always keep in mind, and I want others to always keep in mind, that the sun goes down, but it must rise again. In other words, there will be highs and lows, but you can’t get through the lows of you give up. Ask God for strength to keep your head up.

“What do you do when a chapter ends?
Do you close the book and never read it again?
Where do you go when your story’s done?
You could be who you were or who you’ll become.
If it all goes wrong
Darling, just hold on.
The sun goes down
and it comes back up
The world–it turns–
no matter what
If it all goes wrong
Darling, just hold on.”

(“Just Hold On” by Louis Tomlinson and Steve Aoki)

Thank you Katie for sharing your journey and your inspiring words. Thank you so much for sharing about prolotherapy. Your journey and story has touched me and I am sure it will touch and inspire others. Keep moving forward. -Anna 

 

 

 

Advertisements

You Deserve Love No Matter How Sick You Are

IMG_6811Not deserving love? Is that what you think? When a baby is born and can do nothing for themselves are they undeserving of love? I think not. Is an elderly person, say your parents when they are old and they can no longer care for themselves, would you say they are undeserving  of love? Of course not!

We all come into relationships with baggage (so to speak) things that happened in our past, past breaks ups, family drama, work drama, secrets from our past, illness etc. The point is we all have something that we are insecure about.

If a healthy person gets together with a sick a person it doesn’t mean they are doomed for destruction. It’s important to give the person you are with the proper love and respect they deserve, whether you are sick and they are healthy or vice versa.

We generally can feel like a burden because of not being able to contribute. But we can contribute in small ways like listening to our loved ones talk about their day, being encouraging when we can, if we have the energy (spoons) we can try to help out around the house etc. If we can muster up a little bit of strength to do something through out the day than in fact we have contributed. Give yourself credit for what you do and how far you have come!

Many times we (the chronically ill) begin to feel as though we are a burden to our loved ones. This is generally due to loosing our identity, many of us may identify with our past jobs, hobbies, and lives before illness. When we become sick for longer then a few months or indefinitely we must do a revaluation of ourselves and who we are. During this time it’s easy to get caught up in the thinking of being a burden. We haven’t the funds to pay our own way, or we think we can’t contribute. It is vital to remember, each and every living person has something to contribute to their loved ones lives.

Find your own identity outside of work, your past relationships, and your illness. If you are single and are looking for love you do deserve it. You should be loved for the amazing person you are and the right person will love you for all of you including the fact you are sick. Real love isn’t abusive, it isn’t neglectful, it isn’t hurtful. It is never ok for a spouse to hit or harm you. Being abused does not make you less worthy of love.

I know I am not burden. I didn’t cause these diseases to arise in me, they are part of me, I accept them. Love is something that all of us want. When we become sick we feel we are undeserving of love. We feel this way because we start to question who we are as a person.

If your identity is made up of your job and what you do in your spare time, when you become ill you have to discover who you are a person. The ego takes a hit as we loose our jobs, our hobbies, and are only able to be active less then 10 percent of the time. Shortly there after we loose friends, sometimes family relationships and other times our spouses.

Sometimes us whom are chronically ill begin to wonder what is the point in any of it. I am here to tell you there is a point, you are worthy, you are special and important. We all want to be loved, we all want friendships that last, we all want that partner to love us unconditionally through our deterioration. This is not always the case, some stay some leave. The harsh reality is that some spouses can’t and won’t deal with illness. That does not mean you are unloved or unloveable. That means that person is not right for you, if you truly want to be loved there is someone out there for you that will love you for you and will accept you exactly the way you are. Keep hope alive in your heart.

You are deserving of love. If you don’t believe this it maybe harder for others to see. Self love is important, it truly is the stepping stone to unconditional love. If we can love ourselves unconditionally and accept ourselves for who we are we can in turn love another. Loving ourselves and others, leads others to love us.

Lastly I want to touch on caretakers burn out. Caretakers burn out is a real thing and it can destroy relationships. If someone you know is a caretaker and is burning out they can say and do incredibly hurtful things. It is important to know the signs of caretakers burnout to avoid a relationship break down. If you are sick and your spouse seems withdrawn, has perhaps become short tempered with you, is avoiding you, is possibly abusive towards to you (verbally, or physical). You need help. If your spouse is in caretakers burnout you still deserve love and respect yourself. You are important and you are NOT a burden. There is help for your loved one who may need a break from time to time. Please learn more about caretakers burnout here http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20317392

Hopeful now and always.

💗Anna

Three Challenges To Bring You To Positive Thinking

IMG_6646

How to reshape your thinking from the negative to positive. How do we stop negative thoughts from poisoning our minds? This may would cliché but it’s simple it all starts with you. The negative thought pattern generally starts with this kind of thought, “this is how it always goes. Nothing ever goes my way.”

Again being pulled into the negative vacuum, you start to talk down to yourself which in turn is something you end up believing because you are always listening to what you are saying. “Oh you idiot what did you do that for…” you wouldn’t say that to some else would you? Why be condescending to yourself.

Things in life don’t work out the way that we have planned them because sometimes the things we think are meant for us aren’t meant for us at that moment. Coming to acceptance of our circumstances can help to aid in our healing, but also help us to see the small things in life really aren’t worth getting worked up over.

I have spoken of it before and I will bring it up again I am sure. Find your be purpose, find the thing that puts happiness in your heart and do it. To live happy, we must do things that make us happy.

When negative thoughts begin to wiggle into your mind, stop yourself by saying ten things you love about yourself. Loving yourself is important in building self love, self respect and for providing yourself with self care.

Challenge number 1 Self Love Project. Don’t say anything bad about yourself for a week. Let everything that comes out of your mouth be encouraging to yourself. If you start putting yourself down, realize what you are doing. Negative self-talk is so self-destructive. Stop the negative thoughts before they start, if you feel the need to call yourself a mean name, or talk down to yourself, compliment yourself. Bring your thoughts to a different place. Doing this will help you to get to a better place of self love. By not expressing self hate, you can truly focus on self love. You are worthy of love, don’t ever try to convince yourself otherwise.

Challenge number 2 Self Respect Project. Don’t let others make you feel like you owe them explanation for anything. If you can not make it to an event, a birthday, or a holiday dinner, people should respect your privacy and not pressure you into explaining yourself. Respect yourself and your wishes. Stop explaining yourself to others for a week. Do what you want to do with your best interests at heart.

Challenge number 3 Self Care Project. When someone makes you feel guilt for not being able to keep up with them remind yourself you are self caring. Do this every time someone makes you feel guilty. don’t let others walk on you. Allowing others to be disrespectful to our needs by making us feel guilty is not a good place to be. Learn to say no. “That isn’t going to work for me,” or “I can’t make it.” Start saying no to people when it matters, if you really aren’t up for something, don’t push yourself to do it. Save your spoons for the things, and people you love. Doing what is best for you is crucial to living a healthier and happier life. If what you need to do is cocoon in blankets and watch silly movies, do it!

Do these challenges for a week and see if you notice a difference in your thinking.

An important question I will leave you to think about is this; do you truly love yourself unconditionally?

I am hopeful now and always. You got this fellow spoonies. Don’t give up!

Hugs and hope.

💗Anna

Get Down With The Lingo. SPOONS/SPOON THEORY By Amanda Margaret

IMG_6831

Give a warm welcome to a new guest blogger Amanda Margaret.

Get down with the lingo. SPOONS/SPOON THEORY – See https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

It has nothing to do with being healthy and not wanting to do something, or feeling tired.

Do you know there are different kinds of spoons? IE Someone who has a complicated condition can have “braining spoons” “physical ability spoons” “social spoons” and so on. There can be a subcategories of those as well.

One may have enough braining spoons to be able to follow the plot of the movie but not be able to find the words to describe how the movie makes them feel. One may have enough dexterity spoons to be able to type on their laptop but not text on their phone. One may have enough physical spoons to be able to go for a walk but not be able to lift heavy objects.

SPOONIE – someone who has a chronic condition to whom the spoon theory applies.

SPOONIE MANAGEMENT – having to prioritize what a person does based on what they surmise is their available spoons, which chronically ill bodies can change (or revoke) at any given time.

NORMIE – it doesn’t mean people who are Spoonies consider Normies to be normal or plain or ordinary in every single way. You were probably weird and wonderful if you’re reading this because I seem to have the fortune of attracting unique humans.
Somehow this term has caught on as the general way to quickly describe someone who is not a Spoonie.

NORMIE FACE – AKA NORMIE MASK to put on a smiley face and pretend to be feeling better then we are feeling. This cost us spoons. I compare it to X-Men First Class when Mystique is using a great deal of concentration to hold her form. It takes effort. And the second we are alone, we are worse off for trying to keep it on for so long. We all do it. YUP-even me. Most of you will never see me without my Normie Mask on. Or my other mask on Ha ha ha.
Example of use (to quote a friend of mine) “I give good Normie face.”

MICROMANAGING SPOONS – When another person tries to tell a Spoonie how to manage their spoons or shames them for how they choose to spend their spoons.
IE How come you did Activity A insures of Activity B?

Written by: Amanda Margaret

Interview With Madison Wnuk

IMG_6570

The following is an interveiw done with Madison. Madison lives with reflexive sympathetic dystrophy, postural Orthostatic tachycardia syndrome, ehlers danlos syndrome, and gastroparesis. Please be respectful of her and her journey. The questions I asked her have been bolded and put in italized.

Where are you from tell me a little bit about yourself…

My name is Madison Wnuk am currently a senior in high school. I used to be a competitive gymnast (13 years) before I got sick, but now focus mostly on school and the clubs I’m in. I’m president of the debate team and love it and am the secretary of a health science club and am in a few different honor societies. I love medicine and am very passionate about it. My illnesses have fueled this passion and make me want to become a pediatric surgeon.

What is your name, age, and disease/invisible illness/mental health?

I’m Madison Wnuk, 17 years old, Reflexive Sympathetic Dystrophy, Postural Orthostatic Tachycardia Syndrome, Gastroparesis, and Ehlers Danlos Syndrome.

When did life change for you?

End of eighth grade and freshman year so 2013-2014

What was life like before diagnosis?

I was very athletic and did gymnastics every night for 3 hours. I wished to do gymnastics in college and I also took part in diving and the aerial silks.

How has your diagnosis changed your life?

I no longer can do any sports, have a hard time going to school, and am always exhausted. I miss gymnastics a lot and wish one day I am healthy enough to help coach the little gymnasts. I have become much more focused on school because it is the one thing I absolutely refuse to give up. I currently do saline infusions three times a week through a port, have a gastric pacemaker (that has actually given me back the ability to eat some when I was TPN dependent for 10 months), I experience daily pain in my leg that feels like it is on fire, and always have joints subluxing and dislocating causing me to always be aching and tired.

Please describe the best you can a day in the life of you?

Most days I wake up exhausted and pop back in the joints that have come out in my sleep, I take my multiple medications, and I put on my makeup/mask for the day so I look human. Throughout the day I become more and more tired, and my joints keep coming out, any kind of shoe or sock on my foot increases my pain extremely so I normally wear flip flops that I can slide off when sitting. I use my handicap pass and elevator at school and try to survive the day. I come home take more medications to combat extra pain and nausea that arises at school and most the time take a nap because even just being outside for the few minutes between classes makes the sun sap me of any reserve I have left. Then I wake up and have my mom access me to run fluids as I do my homework for the night.

What was/is the most challenging thing you have faced because of your diagnosis?

The most challenging thing would have to be giving up gymnastics. It was my life, I did it everyday. I wasn’t sure what to do now that I wasn’t “the gymnast”. I had to delve into other interests and hobbies of mine and accept that while I wish I could do it again my body could not handle it.

Do you find that you can keep up with others?

Sometimes, I try to as much as I can and then always pay for it the days following. However, sometimes I have to choose what’s best for me though and not go to that football game and not go out to the pool and sit out in the sun. I’m glad that I have found friends who understand when I cannot keep up.

What would you tell others living with your diagnosis?

It is easy to give up and let all the things you love go. While it has to be within reason you can always find things that you love and at least do them once in a while to help you feel like your self. And also to accept yourself and your limitations, don’t let hate build up inside of you about the things you can’t do. It’s not your fault you didn’t choose this.

What would you like to tell others that don’t live with a similar diagnosis?

To stay open minded. I have run into so many ignorant, judgmental people. Please just know that 90% of illnesses are invisible and just because someone looks okay doesn’t mean they are fighting a hefty battle on the inside.

What have you learnt on your journey?

I have learnt that I’m much stronger than I thought. I have survived through things that no one should have to experience. No matter how bad it gets I remind myself of this and I know that I will make it.

Is there anything you would like to add about your journey?

Before getting sick I had an interest in medicine, but not like I do now. Now I am so passionate about it. I want to make such a difference and I’ve realized that I can make a difference one day in someone’s life. Even if I’m sick I can do it, I will find a way because this is what I am supposed to be doing. People say that things happen for a reason and I really think that this is my reason. All this suffering will help me become a better doctor and help kids like me one day.

Learn about POTS http://www.potsuk.org

What is gastroparesis http://www.mayoclinic.org/diseases-conditions/gastroparesis/home/ovc-20323128

Whar is reflexive sympathetic dystrophy  https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/

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

“People say that things happen for a reason and I really think that is my reason. All this suffering will help me become a better doctor and help kids like me one day.” what a powerful statement Madison and what a great note to end the interview on. Thank you for sharing your story with me and with the world. You are right in thinking you are stronger than you thought. You are a brave young lady. You have been through so much and still come out on top. 

I Shaved My Head For Ehlers Danlos Awareness

IMG_6529

This slideshow requires JavaScript.

I wanted to start this blog post off with how grateful I am to everyone that donated and everyone that tuned in live to see me shave my head. Thank you to everyone that donated we raised $790!

The purpose of me shaving my head was to help raise awareness and to help raise money for EDS! Let me tell you a bit about EDS and the different types.

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. Frequent or chronic dislocations and partial dislocations happen with EDS.

Why a diagnosis is so important! If you are living with EDS you may not realize it, and EDS can cause internal organ problems it can make for a frustrating trip through the medical system. All to often I hear from people who suffer from EDS related complications and still struggle to get their diagnosis. Vascular EDS can cause organ rupture, or aortic aneurysm. Many of the other EDS’s can and do also have complications thus it is crucial to be followed by a medical team.

EDS is more than skin and joints. I am affected by EDS in a multi-systemic way. EDS has caused me to have stomach problems, cognitive problems, I have torn muscles by not even moving and a lot more. EDS causes wide spread pain for me. EDS patients miss the vital glue that everyone else has in their collagen. Due to this frequent and painful partial dislocations and full dislocations occur. If you are lucky like me this happens daily. By shaving my head I wanted to bring awareness to EDS, and also to The ILC Foundation. You can learn more about The ILC Foundation here http://www.theilcfoundation.org

You aren’t alone, don’t fear the diagnosis, embrace it, after you grieve the diagnosis and changes in your life please come and join me in acceptance. If you need or want to talk or follow my journey you can do so here @annawerrun on twitter and Facebook, and @annaweds on instagram.

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 cEDS generally have hyperextendable joints, skin hyperextension, atrophic scarring, chronic joint dislocation and subluxations.

vEDS 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 wanted to share with you some of the photos from yesterday.

IMG_6515IMG_6516IMG_6519

IMG_6525Missed the live video? Here is the video uploaded to YouTube, uncut and raw! Enjoy watching me giggle as I get my head shaved. I Shaved My Head For Ehlers-Danlos Syndrome (EDS) https://youtu.be/M58Gg2J0ZNQ

During the video it was suggested that maybe we should donate my hair to the cancer society. Since the coloured part was cut out of my hair I believe they will take my hair. Thank you for suggesting this idea during the live video. I am so grateful for the awareness we have brought to EDS. Let’s keep EDS in people’s minds by talking about it and spreading the word. Whenever someone asked me about my braces I am happy to educate them on Ehlers-Danlos Syndrome.

Thank you for reading my blog, feel free to follow my blog and if you like subscribe to my YouTube channel. https://www.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0An

Hopeful always,

💗Anna

Chronic Illness Survival Hacks

IMG_6234Here are nine chronic illness survival hacks to help you keep moving forward on your chronic illness journey. Hopefully the following can help others to cope while living with chronic illness. There are important things I try to remind myself of daily, thinga that have helped you get me this far.

Number one: Setting mini goals. Mini goals are simple things for those who are not chronically ill. Getting up and getting dressed is a mini goal, so is eating, tidying etc. Some days these are big goals specially when we are low on our “spoons.” As humans we need to feel like we are accomplishing things. Accomplishments bring us joy, and we feel like we have contributed. We all need to feel like we are contributing.

Number two: The need to create. This is an important part of our existence and experience, we all love to create. History is full of creators. Being creative helps to relive stress, depression and anxiety. Three things that many of us chronically ill warriors face. I love to paint, I lived for painting. Now that I am loosing mobility in my wrist (it’s chronically dislocated) and I am loosing the use of some of my fingers I will start to tape a brush to my hand to be able to continue to paint, there is hope. There is always hope, there is always a way through the pain, the hardship, and the storm that is life.

Number three: Find your purpose. Your purpose is something that keeps you on track mentally. Your purpose could be making others laugh, making music, making YouTube videos, being an activist, being there for your friends, painting, creating, whatever your purpose is, do it. Sometimes we search for our purpose when it’s right in front of us, your purpose could be educating others about your illness. We all have a purpose, we are all of value, we all need to do what feels good for our hearts and minds. Do you know what your purpose is? We all have one and I’m sure yours is amazing and will fill your heart with warmth. A purpose is something that makes life exciting for you, it makes you feel good inside. A true purpose makes you happy, so do what makes you happy.

Number four: Reach out to others when you need help. I used to hate asking for help. Sometimes I still try to not ask for help, but I do it. Prime example is a recently black out, I convulsed for a while and got stuck where I was because I  couldn’t use my body. My husband had to pick me up and move me onto the couch. Even though I couldn’t ask for help, he helped me. When we can’t do things ourselves it can be frustrating, or infuriating, but some people are blessed with the gift of being a caregiver. These people are those who are happy and willing to help. Asking for help doesn’t make you less of a person, asking for help takes courage. Please know you don’t do this alone.

Number five: Take each day as it comes. One breath at a time, take life’s challenges in stride. You do not do this alone. Ask for help. Talk about your battles. You can do this. You were strong. You are brave, beautiful soul. Your inner strength surpasses the strength of the physically strong. Continue to believe in you, you are a warrior of the invisible.

Number six: Being grateful. Being grateful is a wonderful tool in learning to move forward. It is easy to get caught up in the negative, all the bad that is happening to us. What are you grateful for today? I remind myself how grateful I am for another breath of life. I have been blessed with the vision to witness random acts of kindness. I am blessed and grateful for all those whom have helped me and helped others, thank you to all those people for making a difference in this cold dark world.

Number seven: Find joy in the simple things. The simple things in life that bring me joy are the ocean, kitty snuggles, moments with friends and family, doing some cosplay. What are things that bring you joy? The things that bring you joy are things that need to be in your life. If it’s watching a cartoon, or crocheting, whatever it is don’t deprive yourself of something that brings you joy. Your happiness matters. Stop telling yourself or others your a burden, would you say that to your friend/lived one!

Number eight: Live life with hope. Live life well you’ve got it, do the best you can with what you have. Never give up on you. Believe in yourself always. I will always hold hope in my heart for all my fellow invisible illness warriors. I never give up, hope will live in me forever. Hopelessness cannot exist where there is hope. For where there is hope hopelessness cannot enter.

Number nine: Live truly in the moment. Living in today is vital. If we obsess over tomorrow and the tragedies that await us it steals all joy and hope from today. Our peace of mind is robbed, and we are left in disparity. Don’t look into yesterday it’s a memory, and tomorrow is the unknown, living today means clearing your mind of the days past and those to come. Thinking about other things distracts us from today and the gifts it brings, today is truly the present. Live in today for today be open to its gifts.

The ache of the insidious pains invisible illness brings, helps us to unite together in chronic pain. Being united helps us find our invisible demons together we are strong. I always remind myself that for all we go through we are sure a strong bunch. Rare disease, chronic disease, and invisible disease we are united in our illness send in our fight. We are not alone in anything that we go through. Every challenge we face makes us stronger and makes us braver.

Many times in life things do not go as we have planned. Remember to continue to carry-on. Take life a day at a time. Live from one moment to the next. Always remember how far you have come, and remember to never give up on yourself. I cannot change my diseases, I accept them for what they are for what they have done to me and for what they will do to me. This does not mean I quit, I will continue to live life to the best of my ability.

I remain hopeful now and forever.

💗Anna

Dont forget I am shaving my head on August 31st to help raise awareness for a Ehlers-Danlos Syndrome. Learn more about it here https://annawerrunblog.wordpress.com/2017/08/13/shaving-my-head-for-ehlers-danlos-syndrome-awareness/

Shaving My Head For Ehlers-Danlos Syndrome Awareness

IMG_6022

In hopes of raising awareness for Ehlers Danlos Syndrome, I will be shaving my head and raising money for EDS. I will be taking pledges and will be donating all the money to The ILC Foundation in Toronto. The ILC Foundation is a Canadian EDS Foundation, they also help people living with chronic pain, and have a research division. Learn about The ILC Foundation here. http://www.theilcfoundation.org.

IMG_5991Ehlers Danlos Syndrome is an inherited connective tissue disorder, it is incurable and something that I live with. EDS means I am lacking the glue in my connective tissue to hold me together. I dislocate my joints regularly, generally daily and nightly. I wear protective braces to help aid in my mobility. EDS isn’t just about joints, it affects my ability to eat, sleep, and function on my own.

 

IMG_6011

I am disabled because of Ehlers Danlos Syndrome. This condition affects many people and causes it’s suffers to feel isolated, trapped, confused and sometimes suicidal due to not being understood. My hope is to help bring about change in any small way I can. Connecting fellow suffers to the resources we need is vital for our care.

Learn more about EDS it’s types and prognosis here http://www.theilcfoundation.org/2017-eds-international-classification/

I will donate all funds to help aid in research and awareness. I’ll be taking pledges now until August 31st. You can mail your donation to me via cheque make it out to “The ILC Foundation.”

You can donate your pledged amount right to The ILC Foundation here. http://www.theilcfoundation.org/donate/ please let me know how much you are pledging so I can share with everyone how much we raise by the 31st of August.

I will video tape my head shave and put it online. Let’s help raise awareness for Ehlers Danlos Syndrome, let’s make a difference for the younger generation affected by Ehlers Danlos, those undiagnosed and those living with the rarer forms of EDS including the deadly vascular EDS.

Thank you so much for your time. Collectively we can bring about change, together we can make this invisible disorder visible. I remain hopeful now and always.

 

Join me live on instagram August 31 at 3:00pm pacific standard time to see my shave my head. You must be following my instgram to get the notification. Let’s help make a difference together. Can’t afford to donate? Share this blog post and join in the shaving of your head! Tag me and use the following hashtag #ishavedmeheadforeds time for me having hair is ticking away. You matter and your story matters. Never give up or into your illness, and don’t let others treat you like poo.

IMG_6382IMG_6331

Farrar Norwoods Story Living With Vascular EDS

IMG_6018

Farrar lives with Vascular EDS, please be respectful of her and her journey as she shares her story in essay format. Learn about Vascular EDS here https://www.ehlers-danlos.com/eds-types/#vEDS

Hello my name is Farrar Norwood, I’m 28 years old & I have Ehlers Danlos syndrome type IV (vascular type). My life changed dramatically when I was hospitalized in 2016 with severe pain in my abdomen. For my family and myself this was not our first rodeo, so knowing what we knew from previous encounters we rushed to the E.R.

I was diagnosed with vascular eds after the beach trip in 2016. It was a typical day there, playing in the ocean with my husband jumping up and down with the waves getting knocked down. I didn’t think nothing of it we continued our day, we had lunch and hit the road back home. Within 30 minutes of arriving to the house I started getting sick feeling nauseous having stomach pain everything!!! Long story short I was taken to the ER where they began to run tests. They asked me even asked if I was in a car wreck because my pancreas and another organ were damaged pretty bad causing the pain. It was that day a team of doctors came in and gave me the news that I had vascular EDS.

When I was 10 years old I got really sick, & as any mother would my mother took me to my paediatrician. He would exam me only to find I was in a lot more pain than I led on. So after a short visit my mother was told to take me straight to the hospital. I was 10 years old but very observant, so I knew something was wrong but didn’t know the extent.

Needless to say, 3 months later I was leaving the hospital with a colostomy bag and a diagnosis of diverticulitis. I was sent home with a nurse so I could get the proper treatment for healing also to teach my mother and oldest sister how to care for me. I was devastated. I was a kid who had never even heard of such thing. To be exact the Drs said I was the youngest child in history to have ever had to go through so much.

All through out middle school I was learning to live the lifestyle I would always live. I was using the nurses restroom instead of the other one, for my own privacy which was really nice of them now that I think of it.

But being treated different was weird to me and I didn’t like it. People didn’t understand and never really asked either. Flashing forward a few years later I had gotten things under control so I thought. Now at this point I was 21 and I am back in the hospital with the same excruciating pain. After a few months and a lot of pressure on the family I was able to go home once again.

Being properly diagnosed I was back in the hospital once again at the age of 26 with the reoccurring pain. .. It was right after a beach trip on the way home when I started feeling really bad. .. So knowing what I know I stay home hoping it would go away knowing I couldn’t rush every time something alarmed me.

After awhile I knew things were getting worse so my husband took me to the er. That day on April 26 after a lot of testing, crying, poking and vomiting, I was properly diagnosed with ehlers danlos syndrome. I was upset to say the least. .. Now dealing with something I never heard of i also had to face that they were wrong the whole time about me having diverticulitis.

Is my whole life a lie? How can this happen to me? Why me? Why now? Why my family? Confused and in shock my husband and I took the news the best way we could. I’m a firm believer in God so 8 I took it a lot better than he did. He never showed any weakness but I knew He didn’t understand. But thankfully now we know, & this just explained all the un explainable things I was going through. So for me it was a sigh of relief but not a great one.

At least now I was aware of what was going on and why. So I was thankful that God blessed me with drs who knew what was going on. So how was my life different before??? Well before I was young wild and free. . now I’m tired, sore and crabby. Lol. But for the most part I have come to terms with my illness and I live everyday as I did before diagnosis. Happy blessed and thankful. Just a little more aware of things that is all.

My typical day goes like this I wake up, I automatically thank the lord for blessing me with another day. I take my dog out to use the restroom, I brush my teeth, Shower, take my meds, and start my day. Everyday is a challenge and everyday I never know how I will feel. Some days are great some days are horrible. But everyday is a BLESSING. So hurting or not I’m thankful.

The hardest part for me in this whole shebang, is not being able to do as much as my mind and soul thinks I can. For instance, I love to bake. Baking and decorating cakes is my passion so being I have huge family I get the opportunity to live out my dream quite a bit. But after doing a cake for hours and hours at a time & on my feet constantly I pay tremendously the next day.

I wake up exhausted as if I never rested and it takes about 3 days to really feel like myself again. Which makes me sad and has led to a slight depression. So things are a lot different now but that doesn’t mean I’m useless, I’m just not as untouchable as I thought I was.

God has brung me this far, I don’t see him leaving me now!!! So no, I can not keep up with others, & I don’t try either because it would kill me and I’m here to live not to be like anyone other than myself!!!

So if there is one thing I would like to tell others it would be to embrace what God gave you and live life the best way you know how, because regardless of what we are made of. We are all FIGHTERS and here to make one hell of mark on this disease. We can show the world that just because our body is weak doesn’t mean our mind and passion to live is!! We are all beautiful individually designed zebras ready to take on the fight!!!!!

“Thank you for sharing your amazing journey with me and the world. It is for sure best to do what is best for you, resting and self care are for sure important. It is a wonderful out look that you have to be thankful for life. Sending you hope always.” -Anna Werrun 

MCAS Masto Life Hacks For Survival

IMG_5954

Masto tips by My lovely friend and me. These tips that have helped us to stay safe. Living with mast cell disease for me is like being allergic to the world. At any given time, from any given thing I can experience anaphylaxis. I find that explaining it to people as, “I’m not technically allergic to everything, but because the diseases my body thinks I am allergic to everything. Thus resulting in anaphylaxis.”

1. Masto/MCAS tip. If you are scent sensitive.
Masks need to be replaced every 4-6 months. If you use an RZ mask the filter needs to be replaced every month. Carry a back up mask, store your mask in ziplock bags to keep the filters fresh. Use one mask for 2 hours then switch your masks. If someone is to spray any scented products around your mask this will compromise your mask. It is important to wash your mask in scent free gentle soap. Washing your mask can help to prevent a infection on your face from the condensation inside of the mask.

2. More for scents. Fellow mastos have you ever thought of activated carbon? Like the stuff you use for a fish tank!? Again a big thanks to my friend for pointing out that putting things that have absorbed smell into activated carbon can help take the smell out of it.

3. Air purifiers. Using air purifiers has saved my lungs. Air purifiers can help to reduce the amount of smells we breathe in especially in a apartment. Suggested air purifiers http://www.usairpurifiers.com/air-purifiers-use-chemical-voc.html

4. Reduce stress. Do something you truly love or something that is going to help you. When we are sick many times we forget these things. Even if you start out with something simple this can make a huge difference. Painting, or writing are two things I enjoy. I will also go for a walk (if I am able to).

5. Avoid spicy foods. Spicy foods are Known to increase and make mast cells more angry. This doesn’t just mean not eating them. It means not being in a public place that cooks foods like this, and also avoid things like curry, as it is extremely high in histamine.

6. Be gentle with yourself. When you have brain fog remember this happens to all of us Mastos. You aren’t alone. Many of us get forgetful and confused, try your best to not get angry with yourself, you are doing the best you can in that moment. You are worthy of love and respect from others, but most importantly yourself.

7. Go scent free. Unscented soaps, dish soaps, body products, natural tooth paste/unflavoured no Floride, no dyes , I truly at first did not think that the smells of body products affected me but they truly do, they make me anxious. Throw out the smelly products because they can increase risk of reactions, sometimes this means getting rid of clothes, blankets, furniture, because smells can get caught in materials. I would for sure recommending not to smoke, smoking is terrible for ones health all ready and if you have MCAS this will only increase your risks of bad reactions or anaphylaxis.

8. Try the elimination diet (if this has been recommended by your doctor). Sometimes the yummy foods we are eating can be causing the problem. I have personally cut a large majority of things out of my diet to help me feel a little better. It isn’t a cure, but it does help. I also take cromyln before I eat and this can sometimes make a difference in how you feel after you eat should you have gastrointestinal involvement.

Remember you have great value you and your life matter. When we do our best to educate others about our illnesses, we can help change the worlds perception about rare diseases. You can do this. Remember you are a fighter, you aren’t alone in this, not now not ever.