rare

It's an odd mixture: wanting to be seen and heard, but also wanting to just blend in with the crowd.

You see, when you look 'normal,' people don't understand. You get so many questions: Why do you wear a mask? Why do you need to rest? What's that for? Why do you go to the doctor so much? Why do you take so much medicine? The list goes on and on and it feels as though you have to answer all the questions. It’s embarrassing when you don’t want the attention, to be singled out. You just want to look and be ‘normal.’

Then there’s the other questions: Are you really tired? Are you really not feeling well? Do you really need all those doctors? You seem fine; what’s wrong?

What’s wrong? What’s WRONG?! How do I even begin to explain it to you?

See, I’m medically complex. I need about 10 minutes to explain my history to a specialist. To you? Give me at least an hour. I promise you’ll probably check out after the first two minutes though.

See, I look ‘normal.’ You can’t see what’s going on inside of me. You expect me to be normal and it’s easier for you to handle me if I am. So, when you ask and I try to explain, you’ll tune me out because it’s just too much. I know you mean well, but I also know you’d rather not know.

It’s hard to be invisible.

See, I’m so used to being sick that I don’t know what being healthy feels like anymore. And, I’m only 8.

See, I sleep 11-12 hours and still feel tired all day.

See, I have a new infection every month and about 4-6 viruses a month as well. You probably don’t even notice them though.

See, I cough every morning and night. I cry because I’m so exhausted when I get home from school. I choke on my own mucus and cough up big gobs of it. My chest hurts from inflammation. My sinuses are inflamed. My teeth, ears, and head hurt from the pressure. I lose interest in food and often can’t eat because of tooth pain. I’m not gaining weight. My joints are hypermobile so I fatigue quicker than you. I’m so restless in my sleep that I’m never well rested. My legs go numb from sitting in one spot. I’m on an antibiotic that tastes awful for 2 weeks every month. And, I just want to be like you.

So, next time you go to ask, maybe don’t. If I’m brave enough to talk, maybe listen. Because it’s hard to be me.

And if you see me smiling, active, and telling you it’s all okay. It’s okay to believe my mask. But, please remember, you never know the weight that someone else is carrying.

It’s hard to be seen and yet, so hard to be invisible.#ChronicIllness #Rare #immunodeficient #ChronicFatigue #walkamileinmyshoes #invisible

How do you raise awareness!! Best way!! No ideas 💡😅 #Erythromelalgia #Rare diseases
# depression #Anxiety

Laying in bed resting currently watching the sunset and thinking about my upcoming appointment on Monday. Had an MRI with and without contrast Thursday afternoon. Got a call the next afternoon from my Dr to set up an appointment to discuss the results. Anxious me already knew that an appointment was impending after looking at the results via the patient portal that Friday morning. One thing I already knew due to my old Neuro is that I have bilateral cerebellar tonsillar ectopia it's like chairi but not.. supposedly.
My tonsils are a different size than they were 3 years ago so that made me feel a bit weird but trying to not overthink.
Here's the other thing I apparently was born with a very rare congenital thing with my brain called : congenital colpocephaly. It has something to do with the rear ventricles of the brain are larger than normal due to white matter that didn't develop or thicken. An from what I looked researchers have only studied about 50 people in the United States with this since 1940. Talk about a doozy of a sentence when I read that!

That sounds like a lot and I hope that Monday it can be put in simpler terms for me. Everyone that is close to me that I shared the news to they're like "are you ok?!" "Don't stress" and I'm like "I'm pretty calm" because I have known something felt off and when doctors were telling me "well I don't know have you tried a psych or well you are a pretty complicated case."

I had wanted to give up so many times due to the seizures, paralysis, pain, exhaustion and so many more things but I'm glad that I didn't.
My friends and immediate family have been supportive and accommodating and helped me to see the bigger picture in the small quiet moments.

#Rare #ChronicIllness #Spoonie

Looking for others experiences here: I was recently told I have a weird autoimmune disease that causes my body to not hold on to my old vaccines and am now having to repeat childhood vaccines. Yesterday afternoon I got a Tdap shot (it’s a combo for tetanus, diphtheria and pertussis/whooping cough) by the time I went to bed my whole lower body waist down was ridiculous sore, like muscle soreness but worse than anything than any workout could do ( and I can’t workout because of all my other illnesses) so much even the blankets hurt and it hurts even to sit on the toilet, I can barely walk, but arm is fine! Has anything like this ever happened to anyone else? #AutoimmuneDisease #Rare disease #NeurologicalDisorder #Tachycardia #GastrointestinalDisorder #bonedisease #maybemito #stillfiguringthingsout #vaccinesideeffects