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

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Poop Shoot: Chronically Misunderstood

Way back in the very  beginning of my medical journey I had my first ever CT scan. The pediatrician I saw thought I was having an appendicitis so I had a scan scheduled for that afternoon at the hospital in my town. Up until this point the only person in my family who had been there was my brother for a collar bone fracture, and the care wasn’t very good, so our hopes weren’t high, but we didn’t have any other choices that we knew of.

When I arrived for my appointment they have me two one-liter bottles of contrast to drink. It was thick like a smoothie while also being chalky. One was berry which I was fine with and the other was banana. I absolutely hate banana. It isn’t just a food I don’t care for, it’s my least favorite food and the smell alone makes me want to vomit. They didn’t have any more berry though, so I was going to have to suck it up. I had two hours to drink it all and I already wasn’t feeling well.

Needless to say the next two hours were awful.  I couldn’t finish the last half of the second bottle and when we went back so they could perform the CT and told the tech I couldn’t finish she said, “Oh that’s fine, one was probably enough.” Are you kidding? I dry heaved the whole time while forcing myself to drink this nasty paste and I didn’t even have to drink the second one? Ugh

Then comes the IV. This was the first time I had ever gotten one and I was terrified. They made my mom stay in the waiting room which didn’t make much sense because they hadn’t started using radiation yet. The same annoying tech stuck me three times and surprise, surprise didn’t get it.  She called in an ER nurse who got it… three times later. The whole time they searched for a vein she kept saying to me “all we’re gonna do is a take some pictures to look at your poop shoot.” I swear she said “poop shoot” like twelve times. Maybe she thought I was constipated, but there’s no way she could have known that from looking at me.  I may have been 12, but I was more than old enough to know and understand anatomical names for body parts.

Both during and after the scan she also mentioned my “poop shoot” again. Something about that phrase just weirds me out. People say some odd things to kids into to try to relate to them. If your curious I wasn’t constipated, at the time I had Mesenteric Adenitis which was super confusing and I’m still not sure how it all fits into this puzzle. I can’t help but laugh every time I think about a grown woman squawking “poop shoot” over an dover again. Who thinks of these things? 🙂

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

 

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

 

Isolated

Chronic illness is isolating.

I have spent the majority of the past five years alone, in a dark room. I no longer attend high school, and I don’t talk to any of my old friends. I’m not saying these things for pity, or sympathy; they are just simple facts.

Chronic pain keeps me from doing or enjoying pretty much everything I used to. I got sick during the transitional time from elementary school to middle school, so making new friends became really hard. Now that I’ve started online school, I don’t see anyone from my old high school or talk to them. The only “new places” I’ve been going are doctors offices – so I don’t think I’m gonna find any new friends there, but hey ya never know.

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After a few months/years friends and family get tired of asking me how I am feeling. They assume I’m gonna better, and forget I’m sick. But I don’t forget; I don’t have that luxury. They get tired of hearing me say “I’m in pain” or feel fatigued. They no longer want to know about my doctors visits or hospital stays. I don’t blame them, the never ending cycle of chronic illness is tiring and generally negative. Friends were the first thing I lost. A few close ones stuck around a couple of years, but now they’re gone too. My immediate family is still here for me, but my extended family never asks how I am anymore. I don’t need/want them to make a big deal about it – but it would be nice if they’d ask about me every once in a while.

Being alone almost all the time makes going out in public hard. I’m sensitive to noise, and the world is one big ball of sound. I never had social anxiety before, but now it’s exhausting being around other people. I feel emotionally drained even being around family. I know I’m gonna have to get over this, because I can’t stay in my room at my parents house for the rest of my life. I want to go to college and get a good job. Both of those things are gonna have to involve being around other people on a daily basis. I can have a negative outlook on life, and when a lot of negative things are going on it makes it 10x more difficult to act cheery and positive. .

If you find chronic illness isolating – you’re not alone. I’m here and probably in my pajamas.

Lots of Love,

Alyssa