Happy Meme Monday: When You’re Diagnosed With A Rare Disorder

Mom Life With Chiari is currently taking a couple of days off and this is a pre-scheduled post. Enjoy!

Happy Meme Monday

I often get asked what Chiari Malformation and Syringomyelia is, both of which are rare conditions. There are 1 in 1,000 people living with Chiari Malformation and this meme describes my life since my 2013 diagnosis – in a nut shell. Enjoy!

Image result for meme i don't always feel sick but when I do I can some shit no one has heard of

Thank you Mr. Dos Equis XX for that! My Chiari and Syringomyelia thanks you!

Hope you’re having a great Monday.

A-

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40 thoughts on “Happy Meme Monday: When You’re Diagnosed With A Rare Disorder

    1. Thank you Julie! 😊🙏🏽 We are back from Orlando, Florida. Although the children enjoyed every minute of it, I on the other hand, felt like I was going to faint time and time again, and nauseas. My body, my legs especially isn’t what it used to be before my decompression. I must say though, Disney does a great job at helping those with a disability, they helped me tremendously. I don’t want to stop living life due to Chiari but it does slap me silly at times when I think I can do what to me others seem to do so effortlessly – like walking long distances at a time. How have you been feeling?

      Liked by 2 people

  1. This hits home pretty well… my son has microcephaly and they claim he has A Typical AHUS. Which is some rare thing where his red blood cells attack the white? I can kind of understand.

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    1. Yes! Ugh! I hope he’s doing ok, or as ok as he can be. It’s those rare illnesses that even the person living with it has to go on learning about it as they continue to live with it. Does that make any sense?! I hope so. When the surgeon said I had Chiari, I just looked at him with a blank stare. He may have as well spoken in an unknown language. Chiari who?! It’s comforting to know I’m not alone though. I know it’s not the best thing to say perhaps, but I am comforted to find those rare people that are fighting every single day. They’re true heroes.

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  2. I have my own struggles. (Mostly self inflicted) Things I have to deal with everyday. But my son I so incredibly wanted a better life for him. He’s never sat up, walked or said anymore than a few recognizable words in his 5 years. But, I’m determined to give him the best life possible. It hurts but he’s mine and I refuse to let him live totally like a disabled person. Inside of that body is a little boy and he understands more than we realize. That’s what I keep focus on.

    I had never heard of chiari until tonight when I started reading your blog. I respect you for telling your story!

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    1. I understand what you’re saying about wanting a better life for him. I don’t have a child with such unique health circumstances. But if there is a bright side in this, and I will speak on myself, since my 2013 diagnosis, this is all I can remember, this is all I know. What my health is like today, is all I can remember. This life, with these medical, health issues, is all I know. Would I want to change a few – or a lot, of things, yes! But this is what I’ve been dealt with. Do I cry in frustration, sure, I have my days, my moments. Your boy is precious as he is, such an angel here on earth. And you are a blessing for him to have as a father. Your love for him is all he needs. Your love for him seeps right through your words when you speak of him. I have an autistic son, he is behind in his speech and as he grows older, it’s more noticeable. It’s really minuscule compared to what other children have. But these kids – all kids, are a true blessing, no matter their health diagnosis.

      Likewise, I respect and thank you for sharing that with me. 🙏🏽

      Liked by 1 person

  3. Thanks for following my site. I really appreciate it! Hopefully something in it can be of help or strength to you. If nothing else, give you a smile!

    For some reason, I’m a little too talkative on here… lol! So if you ever need anyone to talk to, pray for you and your family, please don’t hesitate to let me know!

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      1. I’m almost silent in person… I guess I have a captive audience here lol. I just can’t seem to shut up lol! I guess I’m hoping to make some friends and help as many people as possible on here.

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      2. I’ve been around for a little while. I started a blog a year or so ago, The Palmetto Woodsman. Outdoorsy stuff mostly… I posted some of my poetry on the EC. Not sure what I’m going to do with the blog because I can’t get out much to contribute to it because of my son.

        The EC helps because I meet people on here and some are pretty upbeat and uplifting. Which I need right now. I don’t really know what im going through at the moment. I’m just in a weird place. I started the EC as kind of an outlet. My church shut down early this year and that’s left a void. So everything I learned there, I try to post on here because I feel like I have to help people. In amongst my faith posts are the historical things I’ve learned. Which kinda go along with scripture. And then there’s my posts where I guess I’m howling out to whoever will listen if that makes any sense.

        I’ve never been one to tell anyone about my life or my problems because I never thought that anyone cared to listen. So, I’m giving it a shot.

        I really like reading other people’s blogs. Like yours, there’s realism. It’s like reading a book but it’s real and hopefully in some way I could help with something.

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      3. I’m so sorry about your church! It’s so unfortunate because I’m sure like you, there are others mourning the loss of their home, their church. But please find a new one! There must be one near you. Yes, I’ve noticed and appreciated that about your blog, I’m always in need of a scripture. I think you’re doing well on the current blog. The audience you captivate, your loyal followers will be there no matter if you need to take a couple days off or don’t post too often. At the end, your son is your priority, period. This blog is an escape, it’s free therapy in form of writing. 😊🙏🏽

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      4. Haha!!! I have six kids, I’m numb to aggravation, noise and annoyances! They’ve left the building, and I’m pretty sure they aren’t coming back. The noise in my home is equivalent to the noise at the clubs I used to visit when I was in my twenties. 😆🤦🏽‍♀️

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      5. Lol! I don’t know what I would do with 6 kids! 1 is enough lol! And he doesn’t do much! I greatly admire you! Don’t know how y’all do it!

        Liked by 1 person

      6. Easy! Care for them! 🤷🏽‍♀️😆 I think most people think I have sextuplets, so wrong! …. I have a zoo! No. Jk. It just feels like it. I just take it day by day, and go with ‘the punches’ as they say. 😊 And of course, two major factors, 1 God and 2 coffee, preferably, café con leche. So good! My husband buys the coffee by the gallons, from Costco.

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      7. It’s expensive but I run on Just Black coffee from the Black Rifle Coffee Company. Strong and black as a moonless night! And try not to overdose if that’s possible.

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      8. Haha! On some days it can be impossible, that second cup always wants to sneak in after lunch time. But can I point something out, is it me, or is just a ‘mom problem’?! I have to reheat my coffee three or four times before finishing it. I mean by the fifth time, I’m just like, you know what, bye! And dump that liquid gold that carries my sanity down the drain.

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      9. I really need a regular coffee pot. My Keurig will brew hot for a max of 2 minutes. Then it’s like it dramatically cools off. But hot, lukewarm or cold, I drink it. I prefer it semi-hot. But take it however I can get it…

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    1. Right?! Absolutely, they told me I had Chiari and I was still staring at them blanked faced! Same here, Chiari although only 1 in 1,000, it is still common. I honestly have NO idea what Hashimoto’s is, I’ll have to ask Google 😔 These names are also so fun to remember, I always have to spell Chiari to people. And still they get it wrong! Haha! Don’t blame them.

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      1. It’s an autoimmune disease. Basically, my thyroid doesn’t function AND my body thinks it is a foriegn object. The day I called my husband to tell him what I was diagnosed with, he replied “Jujutsu”. 😂 When I said, I’m being serious, his response was “well at least you have something with a cool name”. 🤔 I guess that’s one way to look at it! 😂

        Liked by 1 person

      1. I’m hanging in there. I have an MRI of the brain coming up, with and without contrast however I’m allergic to iodine so it gets a little complex but we manage with the great hospital staff. The left side of my face, especially tongue has increasingly got numb, so we need to find out why. My decompression left me with nerve damage, so the doctor thinks it maybe due to that. We won’t know for sure until I do the MRI. It’s no walk in the park but all this is necessary.

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