Odd Selfies

Why do girls take hospital pics or selfies when we feel sick as a young spooine? I didn’t understand at first. It isn’t for sympathy. It is to remind me what God has allowed me to overcome by His grace. To remind me of His goodness. It helps me to see how far I’ve come. The battle has been won. Victory in Jesus. Celebrate each small mile stone as you walk the road of chronic illness. Do you have a selfie or photo that others might think is bazaar? Share the photo and why you took it in the comments.

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Can We Truly Work With Our Doctors?

Everyone gives the advise to work with your doctor. And don’t forget have them communicate with one another. Except for, it’s not always that easy. Most times, it is not an open conversation with a doctor. They will tell you what they are ordering, you better make an appointment. You can avoid it for a while but if you don’t do a or b they will state you declined medical advise and they are not responsible. Or if you don’t do it they let you go as a patience. I have had so few doctors who sit down with me and openly discuss my illness, treatment, or testing, or daily life.

I am not the typical text book case, actually none of it is black and white. I am a rare case. One may picture that brilliant team of doctors around the sick person discussing how to help them. Sadly, that only happens on television. In real looks more like this: gastro sees patient tells patient tell your cardiologist to do this. *They NEVER speak* Cardiologist ah, doesn’t look normal tell your rehemunatologist to order this test. In the hospital they argue. And in the end all that is accomplished working this way is stressing out the patient.

The healthcare system does not function decently, but rather it is extremely dysfunctional. Advocating for yourself as a patent is not an easy task. Additionally, it is most times just as difficult for a caregiver to advocate. Some don’t think patients know anything and should just follow directions. At times, asking for something that is undoubtedly needed results in someone telling you that you want another problem or someone gets offended that you are telling them what to do. More and more stories surface with the medical community not paying attention and causing devastation.

Once you are established at a medical center switching doctors is not only a hassle but can be dangerous due to not being able to refill medications. Sometimes, it feels like we are taped in the Spoonie world and the medical professionals hold the key to our escape. Without being able to truly work together we as patients suffer greatly.

What types of medical dysfunction have you encountered?

Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

Undercover Zebra

I am so excited to have an amazing EDS warrior guest post today, Hana. Please share to help us raise awareness for this rare disease.
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Ever hear of Undercover Boss? Well, this is Undercover Zebra: Where chronic illness warriors go undercover as healthy individuals to chase their dreams in the real world. On this episode, we have Hana Belanger, an 18-year-old girl with the main diagnosis of  Ehlers-Danlos Syndrome Hypermobility Type (hEDS) who dreams of being a cinematographer in the music industry. As an adolescent, she must figure out her own identity, chase her dreams, and not let a rare disease define her. If you think this to be a challenging feat, then you are right. She is…an undercover zebra.
I start every morning the same way, not wanting to get out of bed. Whether it be my 5:45 school alarm to Bowling For Soup’s “High School Never Ends” or sleeping in past noon on the weekends, the act of waking up is just another arduous chore no likes to endure. So far, just like any other teenager in the world, or really, any non-morning person in society.
Once I finally persuade myself it is worth getting up, I “oil” my joints with either Icy Hot or Arctic Ice analgesic gel. Whichever I just happen to have on my bedside table at the moment. Hypermobility is a symptom of EDS, however, in the morning I find that my joints much rather be stiff with pain, like the Tin Man from The Wizard of Oz. I also tend to take this time to pop back in any joints that may have popped out of place while sleeping the night before. Got to love all those constant dislocations and subluxations. More symptoms due to the faulty collagen my body produces. Mornings with a connective tissue are never boring.
Next step is getting dressed. My favorite comfortable get up has to be pajamas, especially my zebra print ones. Sadly, school dress code does not allow for pj’s. Next best outfit of choice? a baggy band t-shirt and a pair of leggings. Don’t forget to accessorize with wristbands, a mood stone choker, and a plethora of braces and KT tape to keep all those joints in place. Pretty sure my joints like to go out more than I do. I always am found wearing my knee braces, but my collection expands to wrist braces, ankle braces, a back brace, and even a neck brace. I also have a cane I decorated in zebra print duct tape because when you need some extra support you have to make sure its cripple swag awesome.
My morning concludes with the breakfast of champions: AKA medication and vitamins. Then, on school days, I rush off to spend 6 long hours so I may be educated enough to graduate. After 12 years of this grueling routine, it does become tedious. I also have a work study internship with my local cable access station, a slam poet, and freelance videographer. The last three are the most fun I believe and give me a huge platform to be myself. When I am on stage or behind a camera I do not feel like the sick kid. I feel like a poet. I feel like a professional videographer. I feel…human.
Many days it is hard to hide the pain I am going through. EDS likes to throw curve balls more than Alton Brown on his show “Cutthroat Kitchen.” Often I wake up with migraines and nausea, which takes hours and even sometimes all day, despite medication. I have injured myself in school walking to lunch and working a one-hour film shoot. It’s as if EDS does not want me to live my dream.
But I will not cave into this awful disorder. That wouldn’t be very punk rock of me to give in. I know my limits and I go as close to the line without crossing over. I make sacrifices when it is safe to do so to enjoy myself. I have been to music festivals and concerts, filmed all day events, went to my Junior Prom, etc. EDS does not have to rule how I live. I just have to adapt to my circumstances in order to survive.
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Bazzar Symptoms

I deal with plenty of bazaar symptoms regularly. I have decided to begin blogging about them occasionally. I don’t know the origin of the majority of them. I don’t have much advice either. So why share? you might ask. My hope is that someone else who encounters anything similar will feel less alone.

My ears are small inside. I encounter a lack of hearing at times. Other times hearing loss in one or both ears. This evening it is both ears. There is a decent amount of pressure at times. I am twenty-three and frequently need to ask others to speak up.

I remember the first time it happened. I was in high school. I freaked out completely, thinking I was going deaf or something had happened to my ear drum. At the time, I was seeing an ENT. When the doctor looked there was nothing noteworthy. Other than my ears are tiny like I said. Therefore, wax will slip in front of the ear drum.

Sometimes pulling on the ear or pushing on it helps. Other times it is a waiting game for hearing to return. No other theories have been brought up with this issue. It is not a major issue at this point in time. However, it is frustrating and distracting. At the same time, it makes me thankful for my hearing.

 

 

 

Bittersweet Birthday

I had overheard people saying that old age caused pain. So, by the time I had chronic pain, about nine years old I thought it was I just a part of the aging process. At the same time, I wondered how everyone else was coping so well with the pain and mine was taking over. I felt extremely guilty for missing an excessive amount of school. It took some time for me to understand that children should not be in intense pain or pain all the time. Those people were indeed referring to elderly people. Who knew?

From a fairly young age, I associated growing up with having more pain. I am thankful to be alive. Especially in light of a handful of times, it was questionable if I would make it. Even so, my birthday is a little difficult emotionally.

It’s not just the physical pain. I tend to feel more isolated around my birthday. This is the time I notice that indeed I am not a typical young adult. The time I need to grieve the things I can no longer do. Time to grieve all I am missing out on.

The social clock is ticking obnoxiously. I can just hear people saying, “She is nearly twenty-three years old. She should be out on her own, not living at home.” It is difficult for me to view my accomplishments. My brain finds it natural to highlight the struggles during certain seasons. Society, as we know, has too many unneeded options. I have learned to allow comments to roll off my back, but sometimes it has a way of getting under my skin.

Furthermore, I have found that the older I have become, my memory has faded. The brain fog is thick. I was devastated when this began to happen. Heartbroken as the memories of my furry friend slipped out of my grip.

It is okay to struggle with holidays or your birthday as someone with a chronic illness. It is okay to have fears. It is okay to not be okay. As long as you do not give up. Even when you don’t feel like it, hold onto hope. Crawl forward, even if you are slower than a snail, you are still making progress.

Even though it is emotional, there is a part of me that looks forward to my birthday. I am deeply blessed to have people in my life who support me and love me. I am thankful for days of simple joy and laughter. The Lord has allowed me to thrive in the midst of great adversity.

“For You shaped me, inside and outYou knitted me together in my mother’s womb long before I took my first breath. I will offer You my grateful heart, for I am Your unique creation, filled with wonder and awe.You have approached even the smallest details with excellence; Your works are wonderful, I carry this knowledge deep within my soul. You see all things; nothing about me was hidden from You. As I took shape in secret, carefully crafted in the heart of the earth before I was born from its womb.You see all things; You saw me growing, changing in my mother’s womb; Every detail of my life was already written in Your book;
You established the length of my life before I ever tasted the sweetness of it. Your thoughts and plans are treasures to me, O God! I cherish each and every one of them! How grand in scope! How many in number!” Psalm 139:13-17 The Voice Translation