IH

Join the Conversation on
IH
171 people
0 stories
19 posts
  • Explore Our Newsletters
  • What's New in IH
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    I will not apologize for being me #

    We all have a past some harder then others some that are devastating and a mess but we all have a past. Just because I am not afraid of being the person i am. I w treated like criminal called crazy and seen as someonw who has nothing to give to society .this is untrue i ama very talented person who is a role model for students and young adults who have struggled with life. We are not what are past says a out us. It's time to wake up and see how just because we had made mistakes and bad choices doesn't mean you can't learn from the experience. We can start our day over at any point in time. #Bewhoyouare #IH .O.P.E.

    Post
    See full photo

    The picture says it all #CheckInWithMe

    I wish there was more I could say other than I am frustratingly the same. I do everything I can and nothing has changed. IIH is unrelenting and as I’ve said before, it’s basically a waiting game for now. Only the waiting game is not a very fun game. It’s actually quite painful. And exhausting. And lonely.

    The only positive thing I can add is I did purchase this crewneck for myself and I can’t wait to get it. Any Harry Potter fans out there?

    Anyway, I wish I had more to add to this, but I want to say I’m still hopeful for the future. There is hope for remission for me. I’m not going to be stuck at home for the rest of my life, and I truly believe that. It might not be exactly be the timeline I expected, but I believe in the life I’ve been dreaming of.

    #IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #ChronicDailyHeadache #ChronicIllness #ChronicFatigue #chronicallyill #chronicallyillteen #chronicallymighty #RareDisease #ChronicallyHopeful #CheckInWithMe #HarryPotter

    2 comments
    Post
    See full photo

    Been struggling with the pain

    My head pain has been at an 8/10 for a week now, and none of my painkillers do anything anymore. My neurologist has raised my diamox, so now it’s just a painful waiting game for it to work.
    Anyone else had problems like this before?

    #iihmemes #IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #PainKillers #painmeds #AdviceWelcome #Advice #CheckInWithMe #headpain #Headache

    3 comments
    Post
    See full photo

    Where I am right now #CheckInWithMe

    I had a lumbar puncture Friday, and while it was a temporary bandaid, my headaches are getting worse again. My blurring vision has started up again, but I have an appointment with my neuro-ophthalmologist tomorrow, so hopefully that goes well. I also don’t want to jinx it, but I’ve finally got a neurologist appointment next Tuesday with a doctor who treats IIH. We’ve been waiting since March, and I’m very grateful it’s happening.

    I think I just feel so lost, and like my treatment plan is so up in the air and wishy-washy that I’m just existing. Everything just takes time, and I hate waiting. I think I could use some words of encouragement, if anyone’s got some to spare.

    #CheckInWithMe #wordsofwisdom #encouragement #encouragementiswelcome #IIH #iihwarrior #IH #survivingnotthriving #IdiopathicIntracranialHypertension #IntracranialHypertension #checkin #AdviceWelcome #advicewanted

    2 comments
    Post

    End of Year Goals

    It was a mighty prompt that prompted this writing (haha- get it?) and I usually love the mighty prompts. They are usually a way to stop and reflect- on myself, on my ideas of success, on my my goals, etc. This one stopped me dead in my tracks as I was scrolling as it said the following:

    What are your top 3 goals for the remainder of the year?

    What really hurt was that I couldn’t come up with one, let alone three! This simple prompt, meant to lift up and celebrate even the smallest goals and achievements in the coming months, shed light to the fact that I don’t even know what my coming months look like. I should probably explain.

    Because of my chronic illness, Idiopathic Intracranial Hypertension, I’ve had to defer my acceptance to college back a year and take what is called a “gap year”. Gap years are pretty normal, the circumstances of mine is not. My goal is to take the fist semester and get my health under control, and then work to save up money the rest of the time so I can go to college next year in the best position I can be in to succeed. Unfortunately, the whole “getting my health under control” thing is a little harder than it sounds. It’s what we’ve been trying to do since since I was diagnosed and subsequently pulled out of school back in March. So obviously, it’s been going great (not).

    As I’m writing this, I have come to the realization that goals don’t always have to be tangible. I don’t have to get x grades for my degree or make x amount of money or anything like that. So I’ve made some goals for the second half of 2021- even if I’m not entirely sure where it’s going to take me yet.

    Emma’s 3 2021 Goals

    - Smile at people when they make eye contact
    - Accept the help as it comes, say thank you, and don’t brush off their support
    - Support my friends as they go off to college and be the friend they can always come back to, no matter how far they’ve gone

    As you go off and make your own goals, whether they look anything like mine or not, make them with you in mind. You are on your own journey, and are in a different stage of life than anyone else around you. Give yourself the grace to make goals that fit where you are right now, not where you wish you could be. I look forward to cheering you on as you reach for the stars!

    #goalsetting #goals #Goal #mightyprompt #mightygoals #mightygoal #3goals #newyearresolutions #IIH #Writing #WritingThroughIt #CheckInWithMe #checkinonme #IdiopathicIntracranialHypertension #IH #IntracranialHypertension #College #gapyear

    2 comments
    Post
    See full photo

    Does a coloring book count? #TheMightyCraftRoom

    I colored and was remotely creative for the first time since my diagnosis in March! I’m so happy I’m able to color in this motivational quotes coloring book without making my symptoms worse! Does a coloring book count as a craft in this group? I sure hope so (I’d like to share more pages as I color them)!

    #Color #coloring #coloringbooks #AdultColoringBooks #Bekindtoyourself #Bekind #TheMightyCraftRoom #CraftRoom #mightycraft #Crayola #crayolamarkers #IIH #iihwarrior #IdiopathicIntracranialHypertension #IH

    7 comments
    Post
    See full photo

    A Life Update - Where Have I Been #CheckInWithMe

    I was going to start this off by apologizing for not posting and for not being as active, but something I say to others and that I believe in very strongly, is that health should come first. And that’s what I had to do for the last week. I took some major steps to (hopefully) sending my health down the right path.

    As some of y’all know, my pressure headaches and neck and back pain have been increasing for a short while now. They ended up getting so bad that I couldn’t lay down for very long without the pain getting unbearable (this is a normal symptom of a major high pressure headache). So the Thursday before last I was directly admitted to neurosurgery and plans for a shunt was made.

    However, the next morning, they came back to me and said I was a candidate for Venus Sinus Stenting, which is much less invasive and could also help me drain csf fluid from my head. So for the next four days they helped manage my pain, prep me for surgery using specific medications, and introduce me to the team that was going to operate on me.

    Tuesday late afternoon, the procedure happened on my right side. I honestly can’t remember all the fancy scientific names, but basically they stuck a small metal tube in a vein in my head to hold it more open and to allow more cerebral spinal fluid to be drained.

    As of right now, I am home, still recovering, but excited to see how much this can help me in the long run!
    💕

    #stent #IIH #iihwarrior #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #CheckInWithMe #LifeUpdate #Hospital #hospitalstay #Surgery #Headache #Operation

    1 comment
    Post

    When You Lose Time to Chronic Illness

    As I’m writing this, it is the end of Memorial Day weekend. The advertisements are in full swing, and the fact that I just graduated from high school has hit me like a truck.

    I’ve been sick with Idiopathic Intracranial Hypertension since March. Since March, I’ve been stuck. Stuck in bed, stuck out of school, stuck out of work. I was diagnosed two days after my eighteenth birthday, and being a legal adult still feels like a foreign concept. (The only part of being eighteen I’ve accepted is going to an adult hospital now.)

    All of my friends are throwing graduation parties, and I’ve been doing my best to show up, at least for a little while. Oftentimes, the conversation will turn to summer plans and beyond. My response is almost second nature: “Well it’ll depend on where I am.” Or maybe: “We’ll have to wait and see.”

    There’s a lot of waiting that comes with chronic illness. Waiting for appointments. Waiting for tests. For medications to work. For insurance to cover this or that. I’m working to accept that waiting comes with the territory. And if it means I need to wait for the next stage of my life, well, I can work to accept that too. Maybe. 😉

    #IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #RareDisease #chronicallyill #chronicallyillteen #ChronicIllness #CheerMeOn #CheckInWithMe #Waiting #HighSchool #College #Student

    4 comments