Rare Disease

Today is rare disease day, so I though I would elaborate more on my disease. Idiopathic intracranial hypertension is a disease that affects 1 out of every 100,000 people. The cause is unknown as well as the cure. The only treatments out there are to try and alleviate the daily pain and pressure. There are two medicines that are tried to lower the pressure, and if those are not very successful with lessening the pain and pressure, then they move on to routine spinal taps. This is the level I am on now. After that there is an eye surgery (blindness is a common side effect of this disease. since the pressure that builds up around your brain also presses on the optic nerve. So if it can not be controlled, vision loss is imminent), and there are shunt surgeries. One that is in the spine and one that is in the brain, but results from these surgeries are far from successful. They seem to have high failure rates, and rarely seem to increase the patient’s quality of life. So as it stands I am at an impass.

Over at The Mighty, author Heath Russell writes about 10 Ways to Support Someone With Intracranial Hypertension. And before I move along to my talk about social media, I would like to quote some excerpts from her writings.

“People living with IH have reported symptoms including headaches described as the “worst of their lives,” nausea, vomiting, dizziness, tinnitus, back and neck pain, sensory changes, vision changes (including strabismus and blindness), difficulty with verbal or written communication and even personality changes. IH is a buildup of cerebral spinal fluid, localized in the head and is diagnosed via a spinal tap.
When my girlfriend received her diagnosis, her doctor informed her she could no longer drive until one full year after her last dizzy spell — which if you were to ask her when that was, she would likely respond “five minutes ago,” or even, “I’m dizzy right now.” The loss of her ability to drive safely was only one of many losses to her independence she had to grieve in the months that followed. I viewed my job from then on out as the role of helping her to rediscover her independence in other ways and to offer support as she navigates the daily headache (no pun intended) of her IH.”
I highly recommend clicking the hyperlink up above and reading her post. Especially if you know anyone suffering.
Now, on to Social Media.

T H I S is my reality juxtaposed next to a “n o r m a l” social media post.

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Social media is great, its amazing the amount of friends I have made via the Internet. But the thing is, social media has turned into comparing and trying to one up each other. No ones life is perfect and I feel social media makes it looks as so. Someone may seem more successful or further along in life than you are, but you never know what else is going on in their life, and also not everyone has the same struggles. For me I had a strict plan for my life, but when I got sick I had to learn it doesn’t matter how fast you achieve your dreams, all that matters is you get there and work on things important to you. Not doing things according to the status quo due to an invisible illness has been very hard on my confidence and emotions. I know I get judged. Some think I am lazy, or I should just get a job, but they do not see what I do everyday and what I struggle with. Those close to me see and tell me they are amazed by how much I do and how much I have accomplished. I work on my small business 10 hours a day, but most days I can’t get out of bed.

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I struggle with a neurological disease that has really taken a toll on my memory, my body, my emotions and even some relationships. I have learned who is truly there for me and who is just there for judgment and to gossip. This is the problem with invisible illnesses. People cannot see them so they never understand. The accuse you of faking or “it can’t be that bad”. It’s been a hard pill to swallow that at 26 I have had to rely on people more than I like to say. But these people never make me feel bad, they do quite the opposite. They remind me to stay strong and keep fighting. This, this is my daily reality, not those perfect pictures. So please keep that in mind when you look through my instagram, or really anyone’s. Social media isn’t reality. Reality is harder, there are struggles, but it is so much more rewarding. I have no idea what my future holds with this disease, but I will never give up and I will keep fighting, and I hope you all do the same with whatever you are fighting. If you ever need anyone to talk to, I am here.

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Do not let anyone make you feel less than or that you have fallen behind. You have not and you are right where you are supposed to be in Y O U R story called life. Live without boundaries, and love with out fear. Keep those good people close and stay away from the toxic. Sadly sometimes they can be family. I am a lucky one in that regard. I have my Parents, my sister, my nana, my handsome James, and my friends’ support through this journey. And many others praying for me. They LOVE me without question; I hope you all have the same. If you don’t well I volunteer to be a shoulder to cry on, an ear to vent to, and a heart to send you love.

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