Undiagnosed: Medical Refugees Movie Trailer

There is a hidden epidemic – millions of people living with perplexing illnesses that elude definition and treatment.

Undiagnosed: Medical Refugees is a medical documentary about what it is like to exist in a constant state of unknown, struggling with undiagnosed illnesses and rare diseases, and existing as medical refugees in a modern health care system. The film aspires to bring objectivity to this controversial and timely subject by interviewing doctors, medical administrators, and people, both children and adults, who have the misfortune of suffering without a diagnosis. Research and professional opinions combine with gripping stories into an incredible narrative that showcases the strength of the human spirit and the need for change in our medical system.

PLEASE HELP FINISH THIS FILM BY DONATING at  UndiagnosedFilm.com

 

Reference: Undiagnosed Films (2014, June 3). Undiagnosed Kickstarter Trailer. Retrieved from https://www.youtube.com/watch?v=CaAwRtojHsc

IIW15: A Battle Between Visible and Invisible Illness

Why the Fight?

You may have seen it all over the news this year: Nasty letters left on the cars of those suffering with invisible disabilities. These are just a few of the examples:

How much you want to bet that there were plenty of other instances, just like those above, that were not reported in the news?

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Let me start by saying, I’m not undermining your feelings towards those who thinks it’s okay to use these spots for convenience – because it’s not. Trust me when I say that I do understand the frustration you must feel when others abuse handicapped parking spaces, essentially taking away these reserved spots that provide you with the accessibility needed. It’s indescribable, really.

However, did you even bother to take the time before writing such a nasty note to actually look for a legitimate parking permit? All of these cases had them – and it’s not like they just hand them out to just anybody.


Information retrieved from care.com

How to Apply for A Handicapped Parking Sticker:

“When you have a disability, there are little things you can do to make your life easier. For example, do you have trouble walking or do you use a cane, wheelchair, walker or other device to get around? Then you’re probably eligible for a handicapped parking sticker.

This simple permit is a must if you have difficulty getting around or if you’re the primary caregiver for someone who has a physical disability. Think of all those shopping trips and doctor’s visits you go on. Being able to park near a front door can save lots of time and energy.

But how do you get one? Here’s a step-by-step guide.

  1. Check if You’re Eligible
    Most people actually aren’t aware that they’re eligible for a handicapped parking permit. They may not realize their disability qualifies them for one or they may not want to admit to having a disability in the first place. The eligibility regulations vary by state and city, but you may be entitled to one if you use portable oxygen or have problems walking.(Click on your state at the bottom of this article to find out more information for your area.)
  2. Know Your Options
    There are different permits available — some for short-term disabilities and some for longer periods of time — depending on your state. Some states offer license plates with permanent handicapped symbols on them, while others provide a placard that can be hung from the rear-view mirror. The tag you should apply for depends on your situation and disability. Temporary/short-term permits usually last for about six months, while permanent parking stickers may be valid for up to two years.If you’re a veteran with a service-connected disability, you may also be eligible for disabled veteran permit. The fees are often waived for these types of permits.
  3. Get an Application
    Check out the website for your local DMV (or the city, town or village clerk that issues permits in your area) and read up on the rules regarding available tags, associated fees and what’s required in the application process. Then print out an application.
  4. Talk to a Doctor
    As soon as you think you or a loved one might benefit from a handicapped sticker, make a doctor’s appointment to discuss parking tag eligibility. (Depending on your disability, you may need to meet with a medical doctor, osteopath, podiatrist, chiropractor, optometrist, registered nurse, etc.) Speak candidly with your doctor and discuss how this permit might help you and your family.If you’re eligible, the physician will fill out the application you printed out or provide a note saying why you need the permit. (Some doctors have these applications available in their offices, so you may not need to print it out.)
  5. Apply for the Permit
    Usually, the disabled person must apply for the handicapped sticker — either online or through the mail. You’re applying for a permit for a person, not a car itself. You can usually ask for permits for several cars all at once.It generally takes about a month to process an application and receive relevant tags or plates. Plan accordingly, especially if you know ahead of time that you might need a temporary tag for a scheduled surgery.
  6. Use the Permit Properly
    There’s a big problem with handicapped parking fraud — people who don’t have disabilities use the permits to score better parking spots. So make sure you read your state’s rules carefully. What areas can you park in? Does the permit-holder have to be in the car? What about if you’re dropping someone off or picking them up? Is the permit good for traveling in other states?
  7. Renew Your Permit
    Renewing also depends on your state. Permits, tags, stickers and license plates all have varying expiration dates — and the renewal process differs depending on whether you have a permanent or temporary sticker. Some tags automatically renew, while others require you to re-certify you’re eligible for a handicapped permit.
  8. Get a Handicapped Parking Sign Some areas let you designate a handicapped parking spot in front of your home. Check with your city or town’s Disability Commission for more information.
  9. Learn the Rules in Your State

To say I’m disgusted with this epidemic is an understatement.

I honestly thought that you would understand what it’s like to feel pain and the hardship that it causes. To know how it feels to be judged by others. Yet here you are – doing exactly that.

This behavior is not okay and it needs to change. Having a visible disability doesn’t make you more privileged or give you the permission to judge others. If they did the same to you, would it be discrimination? How would you feel it you had to explain yourself or your disability everywhere you went? We already have to do that enough. With the doctors who don’t believe we are sick. With the family or friends who think we are just being lazy or dramatic. Or our place of employment when they wonder why we are absent so much. And now – to strangers.

Individuals with invisible illnesses are tired of having to validate themselves – proving how sick they really are. We are constantly made to feel guilty because of the limitations set by our conditions. Always pushed to do things we shouldn’t do just because we want to look or act normal. Could you deal with this every day? Would you live like this?

Please understand, people with invisible disabilities also benefit from the use of these spaces. Let me give you an example: Some days it feels almost impossible just to go to the store. You really don’t want to go – but you know you have to pick up your prescriptions. First you have to get out of bed and get dressed. Then you not only have to drive yourself there, but now you have to get out of the car, walk all the way across the parking lot, and head to the back of the store to get to the pharmacy. Perhaps your muscle aches, you have extreme fatigue, and you have passed out more than once that day. It takes your entire strength just to keep moving. *Please don’t pass out* *Don’t throw up* *I feel like I am dying* But you do it anyways because without these prescriptions, you know that you’ll only feel even more terrible than you do now- or worse- you could end up in the hospital or even dead. So being that much closer to the door, rather than having to trek across a large parking, will ultimately save you some spoons (see Spoon Theory). It really is a lifesaver.

So the next time you decide to leave a note on someones car, I urge you to just think about the things that YOU can’t see.

Just because someone “doesn’t LOOK sick” doesn’t mean that they AREN’T sick. Looks really can be deceiving.

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There are millions (maybe more) of individuals in the world living with an invisible illness. If we could band together – both visible and invisible – imagine what we could do to change the lives of those living with ANY type of disability. Think about it.

I know it’s a cliche´ to say, but I’ll say it anyway.

Truly, you can’t judge a book by it’s cover. 

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30 Things About My Invisible Illness You May Not Know

Invisible Illness Week 2015 

  1. The illness I live with is: Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), May-Thurner Syndrome (MTS), Pelvic Congestion Syndrome (PVCS), and Postural Orthostatic Tachycardia Syndrome (POTS). There’s at least one more condition still undiagnosed – but only time will tell.
  2. I was diagnosed with it in the year: 2015
  3. But I had symptoms since: I’ve had abdominal pain for as early as I can remember, but the real symptoms started around 1997 and have continually gotten worse over the years.
  4. The biggest adjustment I’ve had to make is: Giving up some of the things I love the most – working with animals, going to concerts, hanging out with friends, sports & activities, ghost hunting, traveling, etc. My life is rather limited at the moment.
  5. Most people assume: Before diagnosis most people thought I was sick because of anxiety or stress. Now that I have a diagnosis, a lot of people assume I have a lot of free time since I am I am on medical leave from work. They couldn’t be more wrong. I have anywhere from 1-5 doctor’s appointments or medical testing scheduled every week and my doctors all are an hour and a half away (3-hours round-trip, not to mention appointments/test can be anywhere from 1hr to 5hrs themselves). I also am still in school, since I can do the work on my schedule, and have the rest of life that EVERYONE deals with. Plus running this blog and volunteering where/when I can. My life is full of everything BUT free time.
  6. The hardest part about mornings are: Waking up and getting out of bed. I have trouble sleeping at night, so I am always tired in the mornings. Then when I actually do get up, I’m usually symptomatic and out of it. The minute I climb out of bed, the POTS makes my heart rate increase and blood pressure decrease, causing dizziness, clumsiness, and sometimes syncope. It takes a large cup of coffee and at least an hour to wake up enough to even attempt to get dressed and start my day, which is terrible for early morning doctor appointments as I have to account for this time by waking up an extra hour earlier than a normal person would.
  7. My favorite medical TV show is: Diagnose Me, Mystery Diagnosis, Monsters Inside Me, and House.
  8. A gadget I couldn’t live without is: My cell phone. I do almost everything on it.
  9. The hardest part about nights are: Being unable to sleep because of pain. Night is always the worst. You just lay there, all alone in the dark, with only your thoughts to keep you company.
  10. Each day I take __ pills & vitamins. (No comments, please): Daily: 13 unless I need “emergency meds” which can bring the total upwards of 20 pills or so.
  11. Regarding alternative treatments I:I’m open to try anything, but I go in with a bit of skepticism and I do a lot of research on it (even on traditional medicine) before I’ll put it into my body because I am way too reactive and sensitive to new things.
  12. If I had to choose between an invisible illness or visible I would choose: Invisible Illness. I can hide being sick when it’s necessary or when I don’t feel like explaining myself.
  1. Regarding working and career: I think if you can manage to work and maintain your health then you absolutely should. Unfortunately for most of us, it isn’t feasible to keep up with a 40-hour set work schedule, making it one of the first things to go.
  2. People would be surprised to know: I have symptoms every single day. Some days are better than others, but never do I truly experience an actual break. The symptoms can change from day-to-day, or even hour-to-hour, allowing me to “tolerate” things better at certain times. Still, even though I am in constant pain and feeling nauseous, I still get things done because I have to. I’ve learned to manage and fight against my body just to have some sense of “normal”.
  3. The hardest thing to accept about my new reality has been: Not having the support of certain loved ones. They haven’t to understand my diagnoses. They hardly ask me how I am feeling, or when they do they don’t actually listen to the answer. They don’t read my blog or like my updates on Facebook, but they’ll comment on other people’s statuses or share stranger’s stories about things like cancer or other acute illnesses. It makes me feel completely worthless and invisible sometimes, but I try to not let it bother me since I do have the love and support of so many others.
  4. Something I never thought I could do with my illness that I did was: Continuing to be persistent, despite being turned away from almost every direction. I kept pushing for the doctor’s to listen to me (despite normal lab results) and FINALLY got a diagnosis after all these years.
  5. The commercials about my illness: Unfortunately, my conditions are rare and there are no commercials. One of them (the Nutcracker Syndrome) JUST got placed on the rare disease list after multiple letters sent by people in my support group. How amazing is that? Hoping one day, they’ll all be there.
  6. Something I really miss doing since I was diagnosed is: Being active – either with cheer or roller derby, or even just hiking, swimming, or camping on occasion.
  7. It was really hard to have to give up: Working at the animal hospital. I loved it, but it killed me. When I left, I knew I’d never be coming back because of the strain it put on both my mind and body. I miss it severely.
  8. A new hobby I have taken up since my diagnosis is: Blogging 🙂
  9. If I could have one day of feeling normal again I would:I would love to be a patient advocate and help other’s navigate the healthcare system to find their diagnosis because it is really hard to do alone. Or counsel those with chronic illness. And of course, volunteer (at the very least) with animals again.
  10. My illness has taught me: To be hopeful. To see the struggle in others and to be kinder. To remain strong and to believe in MYSELF. But most of all – to know that I am capable of never giving up, despite the odds against me.
  11. Want to know a secret? One thing people say that gets under my skin is: “Are you sure you’re not just stressedor that it’s related to stress…?” Super Sure – Thanks for trying, though.
  12. But I love it when people: Ask me about my conditions, how I’m feeling, or what the doctor are saying. It not only makes me feel validated, but it shows that you care and are interested in my well-being.
  13. My favorite motto, scripture, quote that gets me through tough times is:

“It can’t rain all the time” (The Crow).

“Here’s an optimistic thought: You’re not chronically ill, you’re medically interesting”.

“My list of diagnosed rare diseases may keep getting longer, but my determination keeps getting stronger”.

“When life knocks you down, roll over and look at the stars”.

“You are fierce, You’re a survivor. You’re a fighter through and through. Little brave, breathe. There is a warrior within you”

  1. When someone is diagnosed I’d like to tell them: First comes congratulations (usually because they have looked for a diagnosis for a long time). Then, I tell them that it’s all going to be ok because NOW they have the tools to fight against whatever it may be. Having a diagnosis is powerful and EMPOWERING. And last, but not least, that I am there for them in whatever way I can help.
  2. Something that has surprised me about living with an illness is: The lack of compassion from people in general.
  3. The nicest thing someone did for me when I wasn’t feeling well was:I am super lucky because I can think of so many examples, but what comes into my head first are the friends and family who visit me regularly to make sure I’m doing ok or when my husband will get me Starbucks before he comes to wake me up in the morning. Makes my day that much more special.
  4. I’m involved with Invisible Illness Week because: I think it’s important to bring awareness to the lives of those living with an invisible illness and how hard it is to try to live with a chronic illness. I don’t think most people understand, or even try to understand. You are constantly judged – by doctors, by family, by friends, by the public. . Hell, even those with VISIBLE disabilities judge us. It’s not right. Constantly having to prove that your symptoms are real and that you are actually sick, despite appearances. Just because “I don’t look sick” doesn’t mean I am not sick. It’s a bigger deal than you think or acknowledge. People have died because of these conditions. Others will commit suicide because of the pain and poor quality of life they experience. And more than likely, I am never going to “be better”. My only real hope is to be able to manage most of my symptoms so I can have a better quality of life. It’s like my ongoing struggle means nothing because “it’s not cancer” or some other condition you are more comfortable with or know more about. The public’s perception of invisible illness has to change and Invisible Illness Week is a great platform to educate everyone on what it’s really like to feel invisible.
  5. The fact that you read this list makes me feel: Loved.Thank you for taking the time out of your day to learn about me and my illnesses. You will never know how much that means to me – or anyone with a chronic illness for that matter. Thank you –just thank you.