Perception And Projection

63927031-E0EF-4D5C-85C2-F4C84236B299Celebrate life’s Joys and triumphs. The happy things in life are the building blocks to a better frame of mind. Your attitude is everything.

Many people think the power of positive thinking is a load crap. My question to those who say that is, have you ever tried it?

It’s proven that we can rewire our thinking to being positive or being negative. Perception is key. If all you see is a dull, dark, decrepit world, your world will be like that. If you see joy, enveloping light that glistens in the wake of even those bad moments, your world will be like that.

How we feed our minds and what we perceive is how we act and interact with others.

Did you know just thinking negative thoughts about you or others will play a larger role in your perception and projection in your life.

Perception being how you see the world. If you perceive things as all bad, you will be a “Downer,” negative perceptions often lead to negative projections. This means complaining all the time and not working on changing the thing you are complaining about and also not working on changing how you view your challenges in life.

If you are positive and look on the brighter side, you may be called “annoying,” by your fellow human. Sadly, some people view the positive as a bad thing. But those who focus on the positive are happier, and tend to be less stressed out. Positive perceptions lead to positive projections. Interacting with others these people come across kinder, open minded, and challenge themselves to find the positive in every situation.

Perception can lead us to project negative, or positive emotions on others. Remember your perception of your situation, your life matter. A negative perception would make us think the world is full of mundane and terrible things. A positive perception will lead us to seeing there is good in the world and kind people.

The world is all about balance, balance your perception into a realistic tone, remember bad things happen, as do good things. Do your best to not get over whelmed by the negative in life.  Do what is best for you. Do what helps you feel like you have a sense of purpose. When you do what you love you shine brighter than ever.

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The Lady Behind The Blog

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My name is Anna, I live with Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, And Mast Cell Activation Syndrome.  Each of these syndromes give me various symptoms, and complications. For the purpose of sharing my story, I would prefer to share the more positive aspects that have come out of my illness, rather than the negative.

I am a blogger, a YouTuber, and an artist. Recently I created an awareness comic for Ehlers-Danlos Syndrome, “Zingy wants to tell you about EDS and so much more.” You can find it on my art blog site here https://artofannawerrun.wordpress.com/2017/11/17/awareness-comic-zingy-the-zebra/

I take each day as it comes, I focus on what I can do today in this moment. When the stresses of life seem to swirl around, I do my best to not get down. I don’t want get swept away in the currents of depression, to stay afloat I will do my best to take the day by hour or by minute if I need to. I find one thing in every day to look forward to, to watch a silly movie, chat with a friend, or just self-care.

Talking about our hardships with a counselor, or loved one is important to help us cope. Letting ourselves grieve the loss illness brings along our journey is important, let yourself grieve.

Support in the community is an important aspect for our survival. We aren’t alone in our struggle, and I’m always happy to chat with others and love to hear the journey others have been on. Being diagnosed with anything can be overwhelming, it can be dizzying and disorienting. Please know your diagnosis isn’t the end, it can be hard when you were first diagnosed. I would encourage you to reach out to support groups and talk with your loved ones. We are all just looking for a little love, understanding, friendship, and support.

I am a woman, a fighter, and I am not a quitter. I will hold my head high even if it is braced snuggly in my vista color. I will not let illnesses rule me.  Illness has changed what I can do and, molded into a new person. I am more understanding of others with chronic and complex illness.

If I can say anything to others living with complex chronic illness it would be this, “you were truly not alone. Living with an illness is not easy, sharing your journey with others can help to ease its burden. Be strong and who you are. Never give up on you.”

May your eyes see the good in the world, May your ears hear positive words from others, may you smell life’s wonderful aromas, may your tongue be a weapon of encouragement. Celebrate life’s Joys and triumphs. The happy things in life are the building blocks to a better frame of mind. Your attitude is everything.

Always remember when you feel overwhelmed to close your eyes and smile for a while. Thank of life and those blessings that are all around. Breathe in your nose and out your mouth, now that you’re grounded open your eyes to the day that is filled with endless possibilities. You can do this. You are a warrior. I remain hopeful always.

 

Why Advocating For Yourself Is Imporant

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Please note this is written from personal experience and research. Please check your local patient bill of rights, know your rights for your health care.

Entering the ER and listing of the diseases I have the nurse behind the glass in triage I don’t looks extremely confused, or says to me, “I have no idea what any of these things are.”

This is one reason it’s important to carry your diagnosis with you. Having a letter head from your doctors office on the top of a diagnosis can help you in emergency situations, and also should you need to see doctors else where in the country.

In the ER you can then give the triage nurse your paper/folder with information. Sometimes they will take it and photocopy it and add it to the file in the hospital. Other times they will not. It really depends on what they deem as necessary.

If you take your forms in to the ER and did you see your doctor it’s important to show them the forms. Having diagnostic material with you can help speed along the process when trying to figure out what the new symptom is that you were having that has attributed to your ER visit. I know for myself this is save me numerous times of becoming frustrated, mostly for not being believed that I am sick.

It is also important to have the information on your diseases and types of diseases if there are subtypes in case of emergencies. I carry with me a binder that has laminated sheets that I have slipped my information into. The information ranges from benign conditions that don’t cause distressing symptoms to life-threatening diseases and symptoms. This is of utter importance to carry with me because if I was to get into a car accident they would see that I’m wearing medical alert jewellery around my neck and I also have a folder full of information as to how to treat me and not kill me.

Medical alert jewelry  can also be a life saver. Please note having one of this is important if you are like me and are living with EDS, if you are alone, if you aren’t conciuos and no one is around your medical jewelry can speak for you.

Carrying information with you it is not only important to you but its important that the people around you realize you also carry this information.

Having someone with you that knows you carry a folder with information should you for example lose consciousness they can call 911 and then give the paramedics the folder with your information in it.

My last experience with a paramedic was very good they wanted to learn about my chronic and where diseases and they took the time to read through my folder. They then took my folder to the triage nurses for me so that they could go through it and see the severity of my diseases. I am forever grateful to the wonderful paramedics that picks me up and took me to the hospital because they made me feel safe, secure and like my life was in good hands.

Remember is truly imperative that you are your own advocate. This means writing down everything you want to talk to your doctor about when you see him or her it is also imperative that you keep pushing forward to get the medical care that you need.

If you do not have an advocate working for you this is why it is important that you work for you. You must dictate clearly to a doctor what it is that you want out of your appointment. This means having notes, and sometimes even writing a letter.

Know your rights. Google search the patient bill of rights for your county, state, province, or country. My understanding of the bill of rights where I live are, you are allowed to seek out medical attention, if your doctor isn’t helping you, you are allowed to get a second opinion. Your doctor should send you to someone else for a second opinion, all you have to do is ask.

Sometimes for days before I go to an appointment I will start writing things down as to what I want to talk about what is the most important thing, why am I here, am I getting results of tests, do I need prescriptions, and the list goes on.

It is of the utmost importance that you advocate for yourself. I understand that you’re tired and exhausted. This is a trying thing living chronically and terminally ill is not easy. But if you do not know what kind of care you want how can you ask for it.

Remember you are of great importance to you and to the medical system. People living with complex illnesses we need to be information sharing with our doctors to help us get the best care possible, and also help others to get the care that need and deserve.

You can do this. Do not give up hope. You are not alone.

Hopeful always.

Anna

Mast Cell/MCS And The Scent Free Challenge

758D4669-D3E5-4A3A-B636-31A536562B12To go scent free  can really help you with your mast cell activation. Some of us with MCAS/MCS would probably say oh smells don’t bother me. Sadly it isn’t just man made smells that are an issue, sometimes essential oils also cause a terrible reaction.

Personally when I started to think about scents and how they were impacting me I had no idea they were the source of my many migraines, my chronic sinus infection, my month long rashes and oddly enough the source of feeling angry when I actually smelt certain smells.

Going scent free did not cure me of mast cell activation syndrome, it did greatly help me to have less migraines. My chronic sinus infection didn’t flare as often. The rashes related to smelling products was lessened simply because I wasn’t putting smelly products on my skin. And it wasn’t experiencing such a surge of anger and anxiouity when I would spell certain products.

Many people assume you can’t go sent free and keep a tidy and clean home, because cleaners aren’t going to clean as well or dish soap won’t work as well, your favorite shampoo or conditioner is heavily scented. If you think about all the scented products that you use body wash, makeup, dish soap, laundry detergent, dryer sheets, cleaning products, shampoo, hair conditioner, toothpaste, deodorant, hair products and more. This post is to explain some alternative options has to going scent free.

Products to consider or companies to consider buying from our seventh generation, and nature clean.  These are two product companies that I have bought from before and have had no reaction to their products. Keep in mind some of these products to come in the scented variety.

Being scent free is a choice, if it benefits your health why not do it. Yes set free products can be a little more expensive, in the long run this is actually going to be more beneficial to you, your health, your mentality, and your overall well-being.

Scent free living is achievable. Some of the products I like to use are the following: seventh generation dish soap, seventh generation laundry soap, seventh generation unscented shampoo and conditioner, plant glycerin soap unscented which can be used as a shampoo and body wash, kiss my face deodorant, I use wool dryer balls for the dryer, scent free cleaning products can be purchased through either online or in stores.

Seven generation makes unscented cleaners for the home, if you cannot handle any of the sense in any cleaners or chemicals, you can use baking soda to clean and scour your bathtub rinse out well with water because leftover baking soda will leave a bit of a film and can be slippery when it is wet.  There is also vinegar that can be used to clean do not use vinegar and baking soda together as this will create a volcanic eruption.

Everyone with mast cell activation or multiple chemical sensitivity reacts differently to different triggers.  I would like to challenge and encourage you, to try to go scent free for at least a month and see if it actually helps you and some of your symptoms.  If it doesn’t at least you tried, if it does help you then you know there are precautionary measures you can take to going scent free. If it works for you and your symptoms improve you maybe inclined to stay scent free.

Go scent free for about a month and you notice a deduction in the amount that you’re reacting, the frequency of your reactions are becoming less and less, and you feel a little better in general. Perhaps sticking with scent free is the way to go.

I would love to hear from you! If you do this challenge and have improved symptoms please sent me a message or an email about your experience. I would love to have you share your insights here on my blog.

Here are some links to products that I and others in the scent free community would recommend others use. Please note it is not gauranted that all these will work but it worth a try to go scent free.

Unscented laundry soap https://well.ca/products/nature-clean-laundry-liquid_91086.html

Unscented cleaner https://well.ca/products/the-unscented-company-all-purpose_118547.html

Unscented Deodorant  https://well.ca/products/thinksport-natural-deodorant_131173.html

Unscented Deodorant https://well.ca/products/kiss-my-face-natural-liquid-rock_8868.html

Unscented dishwashing liquid https://well.ca/products/nature-clean-dishwashing-liquid_91080.html

Unscented body wash https://www.vitacost.com/clearly-natural-glycerine-bar-soap-unscented

Unscented shaving cream https://well.ca/products/dr-bronners-organic-shaving-soap_18748.html

Oil pulling https://wellnessmama.com/7866/oil-pulling/

Unscented toothpaste https://www.cleure.com/natural-toothpaste-flavorless-toothpaste-p/den01a.htm 

Vog mask link https://www.vogmask.com

RZ Mask http://rzmask.com/?afmc=7e

 

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

36CE5DF3-76E7-49FB-B3B0-191F4112A03BGive a warm welcome to a new guest blogger Amanda Margaret. I am pleased to welcome this inspiring, brave, well rounded lady to the blog. I admire her strength, passion and large and caring heart. Please enjoy her spoonie lingo.

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

Looking For Answers; Tamara’s Mysterious Illness

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Join Tamara as she searches for answers about her undiagnosed Illness. Please be respectful of her and her story. 

Hi, thank you for taking the time to read this, I apologize in advance so Sorry this is the LONGEST read of all time. Kinda a run down- I was born in 85, diagnosed with Lyme in the late 90’s I’m 32 currently.

I have 4 kids- ~15 yr old daughter, I was 42 weeks pregnant with her when after really persuading the obgyn he finally induced…let me tell you I was READY her birthday is 9-15-02 so I went all summer super big and pregnant. – now here’s the kicker she was 6 lbs 14 oz or so and I was 42 weeks pregnant. No one ever said anything, never thought it was a big deal. I got my labor/delivery and her birth records recently.

Apparently my thyroid was off in early pregnancy but towards the end it was in limits, NEVER told me anything. Her placenta was off too I can’t quite remember right now but I have the paperwork. Never told me! But in researching after 40 weeks the placenta can start to have issues so who knows.

She’s fine now she’s taller than me, gorgeous, smart, sweet. She’s a perfectionist/stresser, she is having bilateral knee pain for about 2 years they think it may be a torn meniscus, she has to do 6 weeks of pt 3x a week before an MRI can be done. But that’s the only medical stuff that’s known about her.

~12 year old. She was also 6 lb something when she was born. She was born with a vascular birthmark. I asked a MILLION TIMES did I do something, was it the car wreck I was in when she was almost born (I had complications after, she rested low after and major sciatic pain till delivery), I asked if it was genetic etc. Everyone told me nope just how she was formed. She has had too many surgeries some a few hours some 10-12 hour long surgeries. The AVM/VM involves her left ear/head/neck/skull its not into her brain but not from lack of trying, we have surgeries to keep it at bay. She’s also taller than me,gorgeous, smart, sweet, spunky, wonderful, brace, my hero.

~5 year old he was 6 lb 14 oz or so too, my labor/delivery and his birth were HELL! I think we were both close to dying. He had numerous issues, he was hypoglycemic so they kept giving him sugar water bc he was lethargic and was not waking to eat. No problems during pregnancy, etc. At 5 months old or so we found out he had a brain cyst, has left sided weakness. Fast forward he has porencephaly, porencephalic cyst, periventricular white matter loss (it’s not progressed and he does NOT have hydrocephalus THANK GOD), might have cerebral palsy. He is having seizures, he had an EEG that came back abnormal. (He is going to see a pediatric neurologist in December hopefully then we can find an accurate diagnosis and treatment plan) he currently has done PT/OT for over a year. He is also gorgeous, smart, sweet, spunky…he’s a freckled faced red head- he’s like a sour patch kid, but everyday he tells me I’m beautiful and he loves me constantly.

~2 year old he was my BIG baby 8 lb something, came out with the cord around his neck and needed the bag and mask for around a minute, he wasn’t breathing or crying he was purple and bruised. I had no problems during pregnancy either. (I didn’t with any of their pregnancies at least none that I was told about). He is having seizures too, he had an EEG the tech said he is having seizures 2 minutes in and said I’m calling dr now, the report came back saying he was 4 and normal results (I’m taking him to the same pediatric neurologist on December 4th, to have both my boys evaluated). He’s also gorgeous, smart, sweet, spunky. Ok so all my littles came via induction/vaginal delivery. The first at 42 weeks, the others almost 40 weeks I was 39 weeks plus 5 day or more with them. My body didn’t seem to want to progress to exit the baby.

More my issues, I AM EXHAUSTED ALL THE TIME. Recently diagnosed as Chronic Fatigue Syndrome (CFS). I AM A STRESSER! I’m not even kidding it’s not mild I stress a lot. I finally asked my dr for a RX of xanax after a horrible couple of dr trips way out of state for my 12 year old, I tried to not and finally caved in 2016. I don’t take them daily, they set in my bathroom but the fact that I have them is a security blanket.

I have a horrible memory, like ppl talk about their childhood or my siblings talk about our childhood and I’m like “cool” because I have so much I don’t remember, I have been married 16 yrs and I have a hard time recalling his and my memories, I have 4 kids same thing. I have brain fog a lot… i can’t remember current things, I have a hard time focusing. Ive had troubles in the #2 area a lot throughout my life, I thought maybe I had IBS or something.(TMI so I’m sorry- but I’m going to get real…I had pellet like poop A LOT!)

I remember having “symptoms” of gallbladder issues since I was pregnant with my now 15 yr old, she was born in 2002…I was 16 when I was pregnant with her. I had my gallbladder removed in 2014, so I no longer have my gallbladder it was riddled with stones and much too large. (I do not miss it, I was in pain everyday, I thought it was gas, I took hot baths and showers like 3x daily, took the gas pill phazyme daily, etc and now no pain, no phayzyme and #2 was good till recently more in a minute).

I had shingles a few times after that ( same area my upper right back/shoulder/bra area). My dr says you can only have it 1 time so ignored the other times, I have nerve pain for maybe 2 years after in that area. I swear my thyroid is off but my dr only checks tsh it’s always near the edge but within limits so he says I’m fine, never ran a full panel. I gain weight super fast I recently was at 185 …I’m like 5’2-5’3 so that’s hefty for me, I finally got my dr to prescribe phentrymene (sp) bc I needed something to help. I’m at 150-155 lb now, wanting to get to 130ish. (Sorry, I’m kinda an open book so I’m giving too much info).

I get knots in my feet all the time, they hurt so bad, they can be rubbed out…is that plantar fasciitis? I have low temps period, like 97.5 is my norm so like 98.5 I’m feeling. I was in a car wreck at the beginning of the year and I’ve had neck, middle back, lumbar, right knee pain since, and since my #2 has been off again. It was just I was rear ended while I was sitting at a stop sign with my foot on the break pedal. I wasn’t ran over. Well I have grade 1 spondylolisthesis, spinal stenosis, etc etc etc.

My youngest is 2 1/2 and I breastfed for 4 months I’m still leaking milk colored fluid when my nipples are stimulated. The livedo riticularious rash, I have it faintly always but if I’m cold it’s BOLD. A doctor recently told me she thinks I have Raynauds. Hypermobility maybe Ehlers Danlos Symdrome (EDS). Vitamin D Deficiency, my blood work showed my vitamin D level was a 6 like a year and a half ago, recently rechecked it’s a 20. My dr wants me to get to 50-60. Iron Deficiency it’s always low, I have been anemic like my whole life.*Casein sensitivity- my blood worked showed my levels as 8.5 and the range was <2. (I’m sure there’s more symptoms too, eventually I’ll have a longer list).

I’m terrified that I could have after effects of Lyme disease or maybe still have it. BUT MOSTLY I’m terrified that I unknowingly passed it on to my 4 children. I often think that if I had not ever had Lyme disease my kids would all be healthy and not have issues. The guilt is unbearable.

I can’t wait till November 30th to at least ask some questions and get some answers from my son’s neurologist appt. I have more appts scheduled too so hopefully come 2018 I have some answers to this list of questions. I just started piecing this puzzle together after gathering past medical records and asking questions I’ve got us scheduled for specialists and appointments. Hoping to find answers so my kids and I have answers. Does any of the above sound similar to anyone else? If you’ve sit through my novel, Thanks, I hope one day we all find the answers to our medical mystery.

Tamara I wish you the best in your chronic illness journey. Hopeful you get to a diagnosis’s soon and that the doctors are able to help you along your journey. Never give up Advocating for yourself or your children. 

Interview With Caroline

8C4B1DD8-4007-4F83-8C60-E39E6FDD27E7Caroline shares her story please be respectful of her and her journey. Thank you.

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

Caroline Pennington I am 38 years old, diagnosed with hEDS, POTS, MCAS, PTSD.

When did life change for you?

In 2015 at 36 years old.

What was life like before your diagnosis?

Much more physical, and I was much more able to participate.

How has your diagnosis changed your life?

I can’t work or do much physical anything, but it has made me “me.”

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

Losing my family and friends.

Do you find you can keep up with others?

Not most of the time if it’s along event. If it was short-lived I do okay.

What would you tell others living with your diagnosis?

You cannot even imagine how difficult it every aspect of our lives are.

What have you learned trying journey?

The people who are went to shirt with you well, the wrong people go away.

Anything you would like to add about your journey?

Don’t ever give up. Get knocked down, cry, get mad, but don’t give up.

Thank you so much Caroline for giving us a glimpse into your life. You are a brave soul. We have a lot in common in our diagnosis. I am happy to have you in my life, you are a beautiful soul. You are a blessing.

Confidential Caregivers Burnout

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This is the story shared by someone who is chronically ill and their significant other experienced caregivers burnout. This blog is their words, their story and their journey. Please be respectful of this beautiful soul as she shares her story. Thank you to the anonymous writer for baring your soul.

“I guess things started to go downhill when I first became ill. I have been sick for a few years and progressively got worse. Diagnosis after diagnosis mounting up on top of me.

I was dealing with everything the best I could but I didn’t realize that my boyfriend was also dealing with the same thing. He felt as though the weight of the world on his shoulders. I thought this was just something he was saying I didn’t know what it meant at the time.

As time progressed, I watched my relationship crumble. The panic attacks I was having became more frequent, and his depression and detachment seemed to swallow him whole. He became more detached for me, saying he wanted to be single. Expressing he no longer wanted to be with me. My heart ached.

I didn’t ask to be sick. I didn’t want to lose my relationship. I had no idea what caretakers burnout was and the fact was this “caregivers burnout,” was destroying our relationship.

He became more self involved, as he neglected my needs, he was short-tempered, he constantly used verbal assaults to tell me to do things myself. As my diseases worsened this because impossible. I couldn’t rely on him for the simple things like food, so I didn’t eat much. I started skipping meds in hopes of not causing more financial stress, since the prescription list got larger and larger. I was constantly reminded of how my needs were expensive.

Things gradually came to a climax and he asked to leave. Having to give up my home, my safe place, and head off into the unknown.

Caregivers burnout can be prevented should someone be suffering from it. It shouldn’t have to get to a point where the relationship crumble’s.

Caregivers burnout is a real thing. It doesn’t mean that the person does not love you. It means they’re having a hard time coping with the situation in general. Usually counselling would be an ideal situation for this person (the spouse dealing with the caregivers burnout).

Eventually after sometime apart my boyfriend realize that he wanted to be with me. We came back together and work on our relationship and agreed that should this happen in the future again have a feeling burnt out I needing a break he needed to say so.

Caregivers need to take time for themselves, they need to have an activity (something just for them) for a few hours every week so they can recharge.”

Thank you for sharing your story about caregivers burnout. It is real, it is something that needs much more awareness. It can do harm to both parties, please learn more about it here https://www.helpguide.org/articles/stress/caregiver-stress-and-burnout.htm

Karissa, Advocating At Her School

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Karissa  has been on the blog before, and was asked by her school newspaper to write a short excerpt about living with EDS.

 The following in quotations is what she wrote for her school newspaper. Thank you again Karissa for sharing your story on the blog you can find her story here https://annawerrunblog.wordpress.com/2017/06/24/interview-with-karissa/

 Please enjoy the following short excerpt from her school newspaper. 

“When I was asked to write this article, at first I was extremely nervous because I do not want sympathy nor am I asking for the judgment to stop. What I do ask is to have a fair chance to earn your opinion, whether that be positive or negative. Everyone deserves a fair chance, regardless of what they’re going through or who they are.

What a freak, there’s no way anyone could get hurt so easily” she says smirking, without realizing I was still in ear shot. After all, no snowflake thinks it’s the cause of the avalanche. Being sick is difficult, but no pain comes close to the feeling of people judging me without at least trying to see both sides of my story. I’m writing to inform you of my condition and how it’s effected my life and hopefully bring comfort to others in showing them they’re not alone.

I have Ehlers-Danlos Syndrome, a rare genetic condition. Basically, picture being a person as being a house. Your bones are the bricks and your collagen is the cement, what holds the house together. This condition means my bones are still bricks, but my collagen is like chewing gum. Needless to say, my house falls apart. I dislocate joints and ligaments on a daily basis. This causes extreme pain, swelling, and hyper flexibility (which can damage cartilage)

In the past 8 months alone, I have averaged 3 appointments a work week, which is essentially being at the hospital or doctors office every other day. Additionally, I frequently wear casts or braces to protect my body. Sometimes, this is to heal and strengthen joints, and sometimes it’s being proactive to avoid an injury.

Being diagnosed with a life long illness at seventeen years old, some people might think no good came out of this, but that’s not the case. I learned who my friends truly were, when I need someone to lean on. I learned how to communicate better with teachers because on occasion I would have to miss class. I’ve become stronger because of who EDS has made me become.”

Karissa I am honoured to know you, and also proud of you for advocating for Ehlers-Danlos Syndrome at your school. Hope you have a wonderful day full of hope. 

 

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