Why are you here?: Chronically Misunderstood

This one is going to be a bit of a back story, but I’ll make it quick. At the time I in high school and it was my freshman year. The school I went to really didn’t like that I was absent a lot and made me jump through a lot of hoops in order to “make up my time.” This had happened for the past two years I was in middle school as well, but their obsession with me being in school makes this story funny to me. Also at this time doctors thought I had abdominal migraines also known as cyclical vomiting syndrome.

I walked into school late and went to check in  before heading to class. Normally I would go to my house office, but the secretary at the front desk stopped me and asked me my name. When I told her who I was she looked me up in the computer system which I thought was odd. I had come into school late a lot and no one ever questioned me. Normally I just went to the office, got a note, and was on my way.

The lady started to look really confused and said, “you aren’t supposed to be here.” I didn’t know what to say to that. Here I am at school, specifically at a school that get’s very angry when I’m absent yet this lady is telling me I’m not supposed to be here? “You’ve been counted absent for the whole day,” she told me. I responded with, “I don’t know why, I didn’t tell anyone I was going to be gone all day.”

She furiously tapped away on the computer and I just stood there throughly confused. She walked away into the main office and came back looking relieved. She exclaims, rather loudly I might add, ” OH YOU’RE STOMACH MIGRAINE GIRL!” I guess I had developed a reputation. “Yeah…” I replied trying not to laugh. For some reason being stomach migraine girl made everything okay and she let me go on my way. I’m still honestly not sure what that situation was all about, but it was funny nonetheless.

Tell me a funny or weird story about your high school experience!

Lots of Love,

Alyssa

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Daith Piercing for Migraines?

Whether you have migraines or not you may have seen posts that circulate the internet about daith piercings being cures for migraines. The daith is the inner most piece of cartilage on your ear and it’s supposed to act as an acupressure point.

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As a skeptical person I’m not really buying this as a migraine cure. I get the idea, but I don’t really think it will work. With that being said, my mom has had three co-workers get this done and all of them have had less migraines. I could try to come up for explanations for why they got better after getting the piercing, but I’m not going to. It really worked for them and so I’m going to try it… with no expectations of course.

The worst thing that could happen is that it doesn’t work. This isn’t invasive and I really like the look of them so I would probably keep the piercing either way. The place her co-workers went specializes in this piercing for migraines and is reasonably priced, so I’m going to go there as well. I’m not a huge fan of a lot piercings but I think one or two on the ear (that aren’t the typical lobe) can look cool. Some people look really good with other piercings like their nose or septum, I just don’t think I would be one of this people.  I’ve wanted my helix pierced for around two years now but I’ve been vetoed by my parents.

This place doesn’t do appointments, only walk-ins but I’m planning on going on Saturday. You have to get one side done, wait a month for it to heal some, and then get the other side done if it doesn’t completely relieve your migraines or you get them on both sides. I plan to make an update post once I get it and then again after I’ve had them both for a few months.

Have you ever tried any “internet cures” for your chronic illness? Did they work?

Lots of Love,

Alyssa

 

17 Going on 67

I haven’t been feeling great for the past two weeks or so.

I don’t think I’m in full flare mode yet, but my body just feels bad. I’m not having migraines, but I am having daily headaches and gastro issues. My tachycardia has been affecting me more than usual and making me really tired. I just feel old.

My joints hurt, and everything is exhausting. Weird things keep happening that aren’t a big deal, I just don’t normally experience them. My muscles have been twitching, my joint crack ridiculously loud every time I move, and a few times in the past week I’ve started shaking randomly. These things probably won’t last long, because my body is an asshole who likes to mess with me, but they’re annoying none the less. It’s been hard to explain, but something feels off. I’m not in a ton of pain, but I feel terrible and that’s not really something you can fix.

I went to my first appointment at a new counselor since the last one kept canceling on us. It was an “intake” appointment and she just asked me a bunch of questions. I feel like all I’m doing is complaining, but to be honest I didn’t really like her. She asked me a few questions in the beginning and my brain went blank. I couldn’t think, my heart starting racing even faster than normal, my whole body flushed, and I felt lightheaded. I was embarrassed and said, “I’m sorry my brains a little foggy today,” and she just gave me a look like I was crazy and said “oooooh kayyyy.” It felt really judgmental even if she didn’t mean it that way. She also said somethings that rubbed me the wrong way and tried to give me medical advice, which is so very annoying. I’m still going to try to have one real appointment with her and give her a chance, because there isn’t anyone in my area who wants to see a seventeen year old with chronic health issues.

I’m really hoping they’ll find something in my electrophysiology study next week, because this fatigue is awful. I’m normally pretty fatigued, but this a whole other ball game. I am grateful that I’ve only had a few episodes of extreme pain, but I’m fearful for the weeks to come. This time of year is normally really bad for me, so it’s been kind of weird that I’ve had less pain than normal. I’m trying my best to stay positive, although this post wasn’t very positive was it? Sometimes we all just need to rant.  I have a hard time finding a balance between my realist personality, inner cynic, and the positive person I know I should be trying to be.

How are you doing? Let me know what’s knew in your life or what’s been going on!

Lots of Love,

Alyssa

School & Sunglasses: Chronically Misunderstood

This one is inspired by Chronically Dannie. She wrote about her high school violating her privacy, and it brought back this memory I had stored away.

The way high school is set up in my town is we have a freshman center and then a high school for 10-12 grade. Our school is huge and everyone couldn’t fit in the main high school, so freshman had their own building. The administration at the freshman center were super uptight, and were know-it-alls, hence this situation.

If you aren’t familiar with what a 504 plan is read this. I had a meeting about my 504 plan and accommodations, it went fine, they couldn’t come up with very many solutions or things to help me, but that wasn’t a new situation at this point. The next week my mom emailed them to follow up on some plans, and the 504 coordinator responded by telling her she had a new idea. She said I was going to be required to wear sunglasses while at school. WTF? I never wear sunglasses inside and when we told her I wasn’t gonna do that she said, “well my kids who have concussions do it and it helps them, so you should do it.”  She was taken back by the idea that I wouldn’t do that.

Wow I had no idea she had such an extensive background in medicine. Thanks Dr. Web-MD! I’ve never had a concussion and sunglasses aren’t gonna help my migraines, plus do I really need to stick out more? I was already “that girl who’s gone all the time,” I didn’t need to add “sunglasses girl” to the mix. I appreciate her trying to do something, but this wasn’t helpful, and the way she came across also didn’t make the situation better. Also, in what world can you make someone wear sunglasses inside? Definitely not the one I live in!

This just in, sunglasses cure migraines. I guess being in pain was completely avoidable all this time. This also wasn’t the last time that someone told me wearing sunglasses would “cure” my migraines. It’s funny now, but I still think it’s really odd. Have you had any weird experiences or “cures” offered to you due to chronic illness?

Lots of Love,

(and absolutely no sunglasses)

Alyssa

 

Attack

Sometimes I write poetry when I’m feeling overwhelmed and I decided to share some today. I really like reading other peoples poetry, so I hope you enjoy mine.

 

Attack

I am tired
Tired of pain
Tired of “cures”
Tired of being a “head scratcher”

No amount of water or exercise is going to cure me
and in five years do you honestly believe i haven’t tried?

I don’t want to be hesitant on good days
I don’t want to question when my next flare will be
I don’t want to live my life in fear

I’m more scared of the future than excited
I just want to go to sleep
Because my nightmare goes on while I’m awake

But then some days it isn’t bad
Some weeks it isn’t bad
Some months it isn’t that bad

I crawl out of my dark hole to see the sun
I think it’s over
But the beast has other plans

She comes back with a vengeance
Making up for lost time
Putting me in my place

How dare i believe i could live a normal life?
That’s too much to ask for

But then she takes her hand from my throat once again
Giving me hope that she’ll leave me be
But i know her games

I see her lurking in the corners
I see her darkness underneath the cracks
She’s still her, just waiting to attack

No, I’m Not Pregnant

The irony of being queer and chronically ill is that I’ve been asked by doctors if I could possibly be pregnant… a lot.

Now this is part of their job, and I know they have to do it, but the medical field often seems very unaware of any sexuality other than straight. I don’t believe you should make any assumptions about other people – especially when it comes to gender and sexuality. I’ve been asked straight up, “how do you know you’re not pregnant?” Almost like they’re testing me.

Most of the time doctors or nurses ask if you could possibly be pregnant, because they are going to administer a test or medication that could be harmful to a fetus. It makes sense why they ask and make you take a pregnancy test, but it gets a little redundant. I did infusions every day for a week at an infusion center, and every morning I had to pee in a cup for a pregnancy test. If you saw me yesterday afternoon and saw how sick I was, how in the world could you possibly believe I got pregnant in the short time I was gone?

If I can barely walk down the stairs some days, how in the world do you think I’m having sex? Also I rarely leave my house, so where am I supposed to find someone who wants to have sex with me? At this point it’s pretty comical, but still annoying. I don’t mind peeing in the cup, but paying at times $150 for a pregnancy test that it is literally impossible for to be positive is ridiculous.

One visit to the ER, I had already been there for hours and received medication, and now it was time for me to be discharged. They wouldn’t let me leave until I had a pregnancy test, although if I was pregnant any damage done to the fetus was irreversible at this point. This situation was particularly frustrating because I went to the ER for excruciating period cramps. They were taking a long time to do the test, and when the doctor came in I said,” I think it’s pretty obvious I’m not pregnant. I’m on my period.” And yes I know there are abnormalities where sometimes you are pregnant, but will still get one last period, or something could be wrong and you could be bleeding, but that obviously wasn’t the case. Apparently this made the doctor mad (even though I said it in a joking manner and wasn’t trying to be rude, but whatever) and she said, “you could be having a miscarriage,” and gave me the evil eye. I had an ultra sound of my ovaries and uterus while I was there, so I think it would have been clear if I was pregnant.

For someone who’s never been pregnant I’ve taken a lot of pregnancy tests. But hey, just mark it down as a funny story, I guess.

Lots of Love,

(and an empty womb)

Alyssa