ugh

Ehlers Danlos Syndrome, One Year Later

Posted on by sennajandy

Greetings, squadlings!

It has been 460 days since I was officially diagnosed with Ehlers Danlos Syndrome Type III. The past year and then some has made a lot more sense than years in the past–I finally knew why. I had however many problems, but I knew why they were there.

The chest pain was Costochondritis, which is common in people with EDS. The random dizzy spells were caused by my blood pressure dropping. The fainting is common with EDS. The joint pain, the migraines, the nausea…all of it makes sense now.

That doesn’t make it any easier.

At the beginning of 2021, I had a conversation with the doctor who diagnosed me: he asked me if I considered myself to be disabled. I said no. He said he did. I didn’t think much of it.

As 2021 went on, and I lived my life with a diagnosis, I realized something: Ah, shit. I am disabled, aren’t I?

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After talking to my primary doctor, she confirmed that, too: yep, you’re disabled.

There are some perks to being disabled–at least I get good parking. There are other things that annoy me: people acting like I can’t take care of myself is one of them. I know people mean well, I really do, but for the love of god, leave me alone. I’ve been dealing with this for 24 years, I can handle it myself. Having people constantly ask “are you good? Are you okay?” gets really old, really fast. If I’m not okay, I will let you know.

I also wear a medical ID, in case I faint in public before I can get to my medication. Sometimes, when my pain is at really high levels, I’ll even walk with a cane. You won’t believe how many people have asked me why I have a medical ID or a cane: “What do you have a medical ID for?” “Why do you need that?” Well, random woman at work, let me tell you all about my medical history right here, right now. How much time do you have?

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Aside from random middle aged women asking invasive questions, like I said, there are some perks: I’m finally in a physical therapy treatment that’s working. I have medications that can handle when my symptoms get unbearable. I don’t have to wonder why I feel like death all the time. I’ve finally -mostly- learned how to handle my own issues. It’s still a learning process, but I’m getting there.

That being said, it still sucks.

There’s a strong anxiety portion that comes with being disabled. Even when I was a kid, I refused to go to sleepovers, even at my best friends’ houses. I would be that kid at slumber parties who called their parents at 11pm, sobbing in the kitchen with my friend’s parents.

I’ve had moments where I’ve been away from home and had a symptom flare up (mainly, everyone’s favorite, heat exhaustion). Truthfully, there’s still a part of me that worries that, no matter where I go, I’ll have a symptom flare up–for a while, I was basically terrified to go anywhere but my work. I was so scared something would happen. There’s still a bit of that in me, to be honest–I don’t leave the house, even for ten minutes, without all my medications. When I went to Chicago for only a few hours in October, I had a pill cutter in my backpack, fully prepared to take my panic attack medicine. Surprisingly, luckily, I didn’t need it. I was fine that day–my pain levels were low, and I had a lot of fun exploring the Museum of Science & Industry with my sister. Was the thought that I could have a flare up in the back of my mind all day? Yes, of course it was. That being said, it was at a point where it wasn’t so bad where I needed medication. That moment was so big for me, I actually texted my therapist about it.

We’re getting there, people.

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Overall, the past year has been a learning process–not just for me, but for my family, too. I wasn’t the only one who had to look into EDS after I got the diagnosis. At this point, there’s no use feeling sorry for myself or wondering what could have been. It’s just another part of life, and I’m just going to have to deal with it.

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Be well, squadlings.

A Day In The Life of Ehlers Danlos Syndrome

Posted on by sennajandy

Greetings, squadlings.

I know. I have been gone for a very long time. Believe it or not, I’ve had absolutely nothing to say.

ANYWAY, I have a post for you.

A few years ago, I wrote a post about a morning with endometriosis, which you can read here: https://sennajandy.wordpress.com/2018/04/10/a-morning-in-the-life-of-endometriosis/.

Now, time has passed, and I get to write a new one: A Day In The Life of Ehlers Danlos Syndrome. Yee, and I cannot stress this enough, haw.

MONDAY APRIL 12TH, 2021

10AM:

The pain starts in my lower back. Oh goody.

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10:23AM:

Time for braces. Ankles and knees go first.

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10:28AM:

I start packing up my EDS bucket–extra braces, medical tape, athletic wrap, my glasses, the book I’m reading, heat pads, phone charger, and my finger splints. Then I head downstairs. I lay on the couch on my screen porch, waiting for the sweet release of death.

10:55AM:

Wrist braces go on. The pain is getting worse.

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12PM:

Lunch time. I made a grilled cheese. Sitting down. I feel like someone hit me with a truck.

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12:30PM:

Finger splints go on.

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1PM:

Time to shower before work.

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2:35PM:

Time to leave for work.

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3:10PM:

Arrive at work. Boss asks “how are you?” I respond, “do you want the honest answer or the lie?”

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3:30PM:

Sent home from work. That didn’t take long.

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4:15PM:

Bedtime.

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5:45PM:

Dinner time.

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7PM:

What is this? I can move again?

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9:30PM:

And I walk my dog like nothing happened. Pain is 90% gone.

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So that’s how I spent my day.

Be well, squadlings.

Well…That Explains A Lot…

Posted on by sennajandy

Greetings, squadlings.

First and foremost, I am not making this post to get sympathy or have people feel bad for me. I’m honestly writing it so I can look back and remember this, and see how it progresses.

When I was a kid in school, I would always show people my “weird elbows”. I can turn my whole leg around so my foot faces backwards, and I can walk like that. My thumbs are essentially 90 degree angles. That’s just how I grew up.

When I became a dancer my freshman year of high school, things got worse. I was constantly injuring myself: dislocated hips, sciatica, sprained ankles, bruised knees…Sure, that’s typical for a dancer, but for me, it was an almost everyday thing.

As time as gone on, other things have started happening. When I was a sophomore in college, I cut my leg while shaving in the shower in my dorm. I trailed blood all through the bathroom and the hallway. I bled through six Band-Aids. The poor resident assistant had to clean up my blood, and my pencil-tip-sized cut had to be covered with literal gauze by a pre-med student down the hall. I bled through that, too.

I’m nauseous 24/7. Literally all day, every day. I have chronic headaches. Don’t even get me started on bowel movements. All of this, I blamed on Endometriosis. And sure, that was part of it, but even then, it wasn’t an everyday thing.

And then, last December, I went to an ophthalmologist.

This ophthalmologist diagnosed me with something called “Keratoconus”. Basically, my cornea is misshapen. Here’s a picture for your viewing pleasure.

Keratoconus

Keratoconus is caused by a collagen deficiency. Which led the ophthalmologist to ask: “Has anyone ever told you that you might have Ehlers Danlos Syndrome?” 

No. No they had not. But since then, three other doctors, though not qualified to give that diagnosis, have told me I most likely have Ehlers Danlos Syndrome.

And then, this week, I saw a doctor who is qualified to give that diagnosis. And he did.

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Well, that explains a lot.

There it was: the past 23 years of my life, answered. I know why I’m nauseous 24/7: it’s because my freakin’ stomach doesn’t work. I know why I pass out all the time. I know why I have headaches, and gastrointestinal issues, and why I have random bruises, and why I bleed all the time, and why my body functions like it was possessed by Satan himself. Because I have Ehlers Danlos Syndrome.

I should clarify: there are thirteen types of Ehlers Danlos Syndrome. I have Hypermobile Ehlers Danlos Syndrome, also known as Ehlers Danlos Syndrome Type III.

When I first got this news, I was actually relieved. That’s a strange reaction to being told you have a rare genetic disease, but that’s how I felt: I had an answer. I finally had an answer.

And then the fear set in.

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Now what?

Now, I have to get an echocardiogram to make sure my heart is unaffected. The doctor who diagnosed me thinks my heart will be completely fine, but he needs to make sure before he can make that call. I don’t know what an echocardiogram entails, and I’m nervous for that, to be honest. (Shoutout to Shay for telling me that an EKG and ECG are the same thing and forcing me to edit this post at 11:30pm)

And honestly, I wish Aunt Meg was here. She was a worrier, and admittedly, she’d probably be freaking out over this diagnosis. At least we could freak out together.

Overall, even though it sucks, I’ve been dealing with this for 23 years. I can handle this. Like my dad said when I told him about the diagnosis, “it’s just another chapter”. 

Be well, squadlings.

What are the Ehlers-Danlos Syndromes?

https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes

https://www.webmd.com/a-to-z-guides/ehlers-danlos-syndrome-facts#1

Still On My Mind

Posted on by sennajandy

Greetings, squadlings.

On the 23rd of this month, it will be four months since Aunt Meg died. Tomorrow marks four months since the last time I saw her.

Not a month, week, day, hour goes by that I don’t think about her. They say time heals all wounds, but I’m just not so sure.

We were able to hold a private, family-only funeral for her in July. Due to COVID restrictions, only family and her very dearest friends were allowed to attend. No one but the priests could speak–no speeches, no eulogies to remember the incredible person she was.

She was buried on that scorchingly hot day in July in a cemetery not far from my house. The high temperature was around 91 degrees Fahrenheit, with peak heat index reaching around 101. However, during her burial, there was a thunderstorm. It was a cool, yet rainy, 71 degrees as we stood at her gravesite and said our final goodbyes. We let her rest. I go visit her usually once a week–I talk to her, update her on what’s going on (although there’s honestly not much to say), keep her headstone nice and cleaned up, and water the flowers we planted next to her.

Four months have passed since the last time I saw her. Time is supposed to heal all wounds, but honestly, it hasn’t done much.

I fell down the hole of constant listening to the Hamilton soundtrack. There are quite a few lines in the final song, Who Lives, Who Dies, Who Tells Your Story that make me think of Aunt Meg. One of them is “The lord in his kindness, he gives me what you always wanted, he gives me more time”. Another is “I ask myself, “what would you do if you had more time?”” The one that stands out the most, though, is this:

“Oh, I can’t wait to see you again. It’s only a matter of time.” 

Be well, squadlings.

Grief in the Time of COVID

Posted on by sennajandy

Greetings, squadlings!

Grief, no matter what time it hits you, is unpleasant. There’s no denying that. It’s one of the worst feelings there is.

When you’re locked in your house, it’s even worse.

The country pretty much shut down during the third week of March. Aunt Meg died during the third week of April. Tomorrow is the last day of May. To tell you we’ve moved on would be a lie.

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Yes, I am. Thank you, Mr. Biden.

It’s hard to distract yourself from dealing with death when it’s all over the news: between Coronavirus and the protests happening around the United States, it seems like death is everywhere. You can’t escape it. And every time that death toll rises, only one thing comes to mind: their family feels the same way mine does.

Aside from the garbage on TV, not being able to go out and distract yourself is pretty bad, too–I would have been working so much now that I’m graduated, I wouldn’t have even had time to think about what happened on April 23rd. Instead, thanks to COVID and the idiots who think going to bars is necessary right now, I’m locked inside, reliving that day more often than not.

That being said, when something good does happen, or I laugh over Skype/FaceTime with my friends, or I just overall have a good day, the guilt kicks in. How can I be having a good day? Aunt Meg is dead, and I’m sitting here laughing with my friends? Or laughing at a TV show? What is wrong with me? How Could You Even GIFs - Get the best GIF on GIPHY

Not having the closure of a funeral, or that time with my family in the first few days/weeks after Aunt Meg died didn’t help, either. We need that memorial service. We just need to close that door. COVID took that, too.

I knew Aunt Meg’s death was going to hit me like a train, no matter when it happened. I knew it would. I didn’t expect that I would be forced to re-open that wound three months after her actual death, when we can hold a memorial service in July. If we can hold a memorial service in July.

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Be well, squadlings.

So…Now What?

Posted on by sennajandy

Greetings, squadlings!

First and foremost, I would like to thank you all for the kind messages I have received in regards to my last two posts.

Y’all, the hell has come to an end: I’ve officially graduated college.

Now what am I supposed to do?

Most companies are on a hiring freeze due to the pandemic. My two jobs have not reopened. I am…bored. Which has left me a lot of time to think. Which I wish I didn’t have.

Tomorrow marks one month since Aunt Meg died. I feels like forever ago, which is strange, because I haven’t really done anything in between then and now.

Grief is an interesting thing: It’s even more interesting when you’re locked in your house and can’t distract yourself by hanging out with your friends or going and spending money you don’t have on things you don’t need at the stores. I’ll start to think about Aunt Meg, and then instantly start to think of something else because I refuse to cry again. Not Gonna Happen Donald Trump GIF by Election 2016 - Find & Share ...

She would not be pleased that I put that gif in here.

We weren’t even able to have a funeral due to the pandemic, so our grief process is on hold. We didn’t just get to have the funeral, bury her ashes, and try to move on with our lives. We get to do that in July (hopefully). 

I wonder what that’s going to be like. I’ve never really had to put grief on hold before–it came, it went. Now, I have to deal with Aunt Meg’s death three months after she actually died. 

I did something I never wanted to do: I graduated college without her. The day of my “graduation”, which of course had no ceremony, I was in one of the worst moods I’ve been in since Aunt Meg died. I didn’t want to hear about graduation. I didn’t want to celebrate it. I just wanted that stupid day to be over, and I didn’t know why.

Looking back, I think it was because I knew she wasn’t there to celebrate it with me.

Be well, squadlings.

Why I Was Afraid of Someone I Trusted

Posted on by sennajandy

Greetings, squadlings!

I’ve written and deleted this post probably 20 times. Who knows if I’ll actually post it now?

Many people have asked me why my blog died a slow, painful death around spring of 2019. I always tell people that it’s because I didn’t have anything to say. While that’s partially true, the whole truth is that I didn’t want to say anything.

I didn’t want him to know what I was doing. I didn’t want him to know where I was, or what plans my friends and I had, or what I was interested in. I wanted him gone. And now, he is. It’s been almost a year, and I’ve had a lot of time to think about what went on that summer. Although 10 months have passed since he started to change, and it’s been about six months since we’ve heard from him, that was the summer from hell: and I still don’t know if I’ve forgiven him for it.

I want to preface this by saying: this person was not a romantic partner of mine or any of my family members. This post also contains privacy restrictions so certain people will not know it has been posted. If you can see it, congratulations, you passed. I absolutely WILL NOT reveal my relationship to this person in this post. His name will not be mentioned, his identity will not be revealed at any point during this post.

He started to change in late April, early May. At first, we made jokes: he just had weird quirks. That was all. Right?

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Oh girl, that is not right.

About a month later, things got bad: It started the morning when he showed up at my house unannounced for the first time. He stormed in the door, screamed incoherently for ten minutes, and then bolted like nothing happened. We called him to see if he was ok, and he continued to scream incoherently for an hour. That’s when we knew this wasn’t a joke anymore.

For the rest of the summer, he continued to show up at my house unannounced. Sometimes he would go on angry rants, sometimes he would just take food from our kitchen or pantry and leave. We later found out he had been stealing food from our pantry.

I spent the summer in a pitch black house at night–we couldn’t make it look like we were home, or he would pound on the door until we answered and let him in. There was one night when I was home alone, I took a shower in a pitch black, silent house for fear that he would see the lights on and barge in the front door. One time, he showed up to my house unannounced, and though I never saw him because my mom managed to keep him in the front yard, I crawled under my blankets and cried, clutching the pepper spray I had purchased from a nearby hardware store and praying he wouldn’t come in the house. I could hear his voice through my open window–that voice I once knew so well. The voice of someone I trusted.

Being afraid of someone you trust is a scary thing. This person had been in my life for years–he knew me, he knew my family. He was my friend. I had no issues with him. None. And then one day, that all changed, and I was terrified of him. I’d see a car the same color as his while driving and have to pull over and cry. Even if it wasn’t him. One time, it was him. He simply waved from inside his car, and I whipped onto the nearest empty street and immediately burst into tears, screaming at no one in particular that I was just so, so sick of running from him. There was nothing I could do–he knew where I lived, he knew where I worked, he knew my friends…I felt like I was being hunted in my own hometown.

Even when I did build up the courage to leave my hometown with my friends, I was constantly looking over my shoulder. Had he somehow figured out that I had left town and followed me? I started bringing pepper spray everywhere I went. I slept with it on my bedside table, and my beating stick (don’t ask) next to me. He was stealing food, who’s to say he wouldn’t steal a house key? He was posting videos on Snapchat of him talking to himself or driving at 110mph down city streets, where the speed limit is a weak 25mph. He had finally broken.

Then came the day he tried to follow me to work. Two hours after he checked himself out of the psych ward.

He knew my work schedule–he knew I worked at 4pm on Wednesdays that particular summer. He also knew I was home alone…and he showed up at my house anyway.

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I did the only thing I could think to do: I grabbed my mom’s car keys and bolted out the front door, making sure to lock it, because where I was going, I had to leave my dog behind.

I barely made it into the car before he knocked on the window.

“Where are you going?” He asked.

“I have to go.” I replied, near tears.

“Where are you going, though? Can I come with you? I’ll go with you. We can go together.”

“I have to go.” 

“Are you going to work?”

“I have to go now.”

“You’re going to work, aren’t you? I’ll go, too. I’ll see you at your work.”

And then I did a very stupid thing. I drove to work.

I ran in the door, and my friend happened to be standing at the host desk, where I was supposed to be in just an hour. She couldn’t even get a word out before I blurted out through tears, “He came to my house.” My friend’s face turned white. She knew I was home alone. She knew what he had been doing. She knew this was bad.

When my boss saw me sobbing, dressed in fancy office clothes from my internship at a law firm (I didn’t even have time to change before I had to run out of the house), he took me into the back office, and I told him everything: I was being followed, and I was scared shitless.

My boss was very understanding–he assured me that this person would not be allowed in the restaurant, and if he did come, he would be escorted out almost immediately. I was sent home for my own safety. My friend came with me so I wouldn’t be alone.

I went to the police the next day. And I sobbed the whole time as I told them everything. I told them his name, his birthday, what kind of car he drove, a physical description…I gave them every piece of information about him that I had.

And he still kept coming.

Lots of other things happened with him between the first time he barged into my house and the last time I saw him, but this would be a real long post if I mentioned everything. It’s already ungodly long. I will say, after he started threatening people (myself included), I ended up going to the police one more time.

And then, in August, he disappeared.

I haven’t seen or heard from him since that summer. Neither has anyone else. He disappeared. I was relieved when he stopped showing up, but also…conflicted. Disclaimer: We know he is alive and safe. 

I had trusted this person. I had known him for years. I watched him grieve the death of his father–hell, I grieved the death of his father. And with the flick of a switch, I was terrified of him.

Do I miss him? Yes and no. I miss who he used to be–the guy he was before all of this. I don’t miss who he became. Do I still have a moment of panic when I see a car the same color as his? You’re damn right I do–someone at my school had the same car as him, and every time I saw it, my heart stopped. I couldn’t even park next to it for the irrational fear that it might actually be his car. I was, and still am, afraid of him. Which leads me to the question….

Do I forgive him?

That’s a post for another time, because I still don’t have the goddamn answer.

Be well, squadlings.

AHHHHHHHHHHHHHHHHH. That Is All.

Posted on by sennajandy

Greetings, squadlings!

We are coming up on two weeks in isolation due to Coronavirus, AKA COVID-19. This shit sucks.

Luckily, knock on wood, my family and I do not have the virus. We are isolating for our own safety and the safety of those around us. And man, is it frickin’ BORING.

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My school moved all online for the rest of the semester. My college graduation ceremony was also cancelled, which I don’t really care about–I don’t want to spend three hours sitting around for a $40,000 piece of paper and a handshake from some old dude I’ve never met.

My school gave us an extra week of spring break so they could move everything online. So essentially, I’ve been sitting around for two weeks doing nothing. It sucks.

Both of my jobs got shut down due to the virus, so I’m broke, too.

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My friend had a baby on Monday. No one is allowed to visit her or said baby in the hospital because of the virus. I have FaceTimed him and watched him through the NICU livestream, but that’s it.

Someone send help.

Be well, squadlings.

I Feel Like I’m Too Young For This

Posted on by sennajandy

Greetings, squadlings!

I am 22 years old. I will be 23 in May.

Am I too young to know so many dead people? From old age to suicide to drug overdoses, I can name at least 14 people I know who have died. And they weren’t all old–yes, one was 92, but another was 19.

I feel like I’m too young to know so many people who have died. At least five of them, I went to high school with. Three were suicides, two were drug overdoses. Another old friend of mine, who I knew in high school (she didn’t go to my school) died of a drug overdose yesterday. That makes six people, from my high school years alone, who have died before I’ve even graduated college. Is that too many?

I also recently went to a funeral for a family friend. He was 72. Last year, I went to a funeral for a friend’s stepdad, who passed away unexpectedly at the age of 73. Hell, there was a day in 2016 when I went to two funerals in one day, one for a 55-year-old woman, the other for a 79-year-old man.

And here I am, in 2020, waiting for information about the funeral of a recently-turned-22-year-old friend who passed from a heroin overdose yesterday.

Am I too young for this?

Let me know, because I feel like I am.

Be well, squadlings.

We’re Growing Up

Posted on by sennajandy

Greetings, squadlings!

Let’s see if I can do this writing thing again, shall we?

For those of you who don’t know, I have four sisters and two brothers. Four stepsisters, one half-brother, and one full brother. We range in ages from 24 to 5.

And holy shit, are we getting old.

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Let’s go youngest to oldest, shall we?

My youngest sibling is my half-brother. He’s five. He plays every sport under the sun and is currently in kindergarten. He gets very angry if you don’t let him write his full name (Lucas) on his projects, except no one calls him Lucas. No one.

Second in line is one of my sisters. She’s three weeks away from seventeen and oh my god I’m so old. She also drives a nicer car than I do and she’s a lot prettier than I am, which I’m lowkey salty about.

Then there’s another sister. She goes to school four hours from home and is living her best life. Slay, queen.

That brings us to the love of my life, my other younger sister. She goes to school an hour from home, loves Taco Bell, and has a very tall boyfriend.

Now we get to the interesting ones. (Sorry, younger sibs, but you’re kind of boring)

My older sister graduated from college recently, and is currently away for work. Away for work in India. Y’all know I’m from Wisconsin. India is, you know, only 8,000 miles away. Not too bad.

My older brother graduated from college in May. About a week ago, he accepted a job in Massachusetts. I’m really annoyed that I have to learn to spell that now.

My point is, I’ve never lived more than four hours away from any of my siblings. The difference with my sister moving to India and my brother moving to Boston is that my sister is coming back. She’ll actually be back in a few weeks. My brother, however, will be living in Boston for good. 

That’s very weird. I’m not sure how to take it, honestly. I didn’t even really know how to take my sister leaving–one day, I woke up, and she was gone. My brother isn’t leaving until after I graduate in May (oh yeah, I’m graduating, but we’ll get to that later). Do I attempt to process that he won’t be living in the room three feet away from mine? Or do I just “meh” the whole thing? How did he react when I left (and then came back, because I suck)?

Image result for what do I do gif

You will never stop me from posting Adam Driver gifs. Never.

I didn’t even live with my sister, and her absence this past month has been obvious. She responds to my texts twelve hours later, when she usually responds after a few minutes. Of course, the time difference for Wisconsin and Massachusetts is only an hour, so we won’t have that issue with my brother.

I don’t know. I need a nap.

Be well, squadlings.