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.

100 Things That Remind Me of You.

Posted on by sennajandy

Greetings, squadlings.

Today is October 2nd, 2021. My grandpa was born on October 2nd, 1921. He would be 100 years old today.

Unfortunately, he never made it past 84–he died on October 14th, 2005.

For his 100th birthday, I’ve compiled a list of 100 things that remind me of him. Enjoy.

  1. Plaid. You know which pattern.
  2. Fall.
  3. Lakeside Park.
  4. The number 247.
  5. Northwestern.
  6. Old white dudes in crewneck sweatshirts.
  7. The grandfather clock in my dining room. Even though it doesn’t work anymore.
  8. Cardinals.
  9. Football.
  10. Writing. I had to get that gene from somewhere.
  11. Christmas.
  12. Graham crackers.
  13. My cousin Margaret.
  14. $1 bills. I’m a bank teller, and I still think of you, every time.
  15. Antiques.
  16. My dog bookend–the last thing you ever bought for me.
  17. Books.
  18. Presidents.
  19. The damn bell on the back of the door.
  20. Front porches.
  21. That little white bench.
  22. Your crazy children.
  23. Stan Lee. He looks like you.
  24. Big glasses.
  25. The nightly news.
  26. Driving.
  27. Midwestern dads.
  28. Happiness.
  29. Hugs.
  30. Your voice. I can still hear it.
  31. My mom.
  32. Bats. I think you would be mortified by that.
  33. The Wisconsin Badgers.
  34. World War II.
  35. The lighthouse.
  36. Rudolph.
  37. “Ya got it!”
  38. Your love for our family.
  39. Newspapers.
  40. White houses.
  41. Stuffed animals. You used to buy them for me.
  42. October. For the best and worst of reasons.
  43. Christmas Eve.
  44. Sweaters.
  45. The Little Farmer.
  46. Aunt Meg’s house.
  47. Photographs.
  48. Bookshelves.
  49. The chairs in the living room.
  50. The old house.
  51. Smiles.
  52. Your high school varsity letters–all 14 of them.
  53. Old movies.
  54. Sharpies.
  55. “Gun it!”
  56. My mom’s stories.
  57. Pine trees.
  58. Backyards.
  59. Garages.
  60. That little red car that my brother and I would fight over.
  61. The freakin’ Camry, which I can’t believe still works.
  62. Your laugh.
  63. The photos of you around my house.
  64. Go-Karts.
  65. Bumper Cars.
  66. Trains.
  67. Ice cream.
  68. FdL High School.
  69. Words.
  70. Heaven.
  71. Dean Martin, for some reason.
  72. Christmas music.
  73. The ornaments you made for our family–still on all our trees, all these years later.
  74. Unfortunately, mac and cheese from Noodles & Company.
  75. Air vents.
  76. “It’s so loud!”
  77. Your crazy grandchildren.
  78. Your crazy great grandchildren, that you never got to meet.
  79. Knickknacks. God, you had a lot.
  80. The books you wrote.
  81. Presents.
  82. Cards.
  83. For some reason, the light fixtures in my house.
  84. Desks.
  85. Pens, pencils, markers…
  86. Feeling brokenhearted because we lost you.
  87. The Green Bay Packers.
  88. The old kitchen table.
  89. Tile floors.
  90. My aunt Sarah.
  91. My aunt Meg.
  92. Family.
  93. The blinking light on top of the hospital.
  94. Carpeted floors.
  95. FdL in general.
  96. Fireplaces.
  97. Car horns.
  98. Red doors.
  99. Birds.
  100. Love.

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.

Grieving With -And For- Your Best Friend

Posted on by sennajandy

Greetings, squadlings.

2020 sucks.

On April 23rd, my Aunt Meg died. We all remember this. However, because 2020 is a massive dumpster fire, October came with a vengeance: On October 1st, my best friend Katie’s mom, Allison, had a stroke.

My first reaction was to immediately tell her I was on my way to her house, two and a half hours away. Joke’s on me: there’s a pandemic.

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Allison miraculously survived her stroke, but there’s a long road of recovery ahead. I’m not going to dive into details for her own privacy.

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Grief is a weird thing, and it hits people a lot of different ways. Right now, I would say Katie is at the same stage I was at in the first few weeks after Aunt Meg died: random bursts of crying and feeling hopeless. It took me a long time to leave that stage. I really hope it doesn’t take Katie as long.

That being said, my grieving for Aunt Meg’s death isn’t over. You don’t just wake up one day and everything is fine. It’s a process, and it’s far from over. Halloween is going to be a rough one: when I was a kid, we spent every Halloween at Aunt Meg’s house, showing off our costumes and scoring the good candy from Aunt Meg’s friendly neighbors. Even though I haven’t gone trick-or-treating in years, it’s going to be a weird Halloween when those memories come back.

For a long time, I was grieving alone. It was a feeling I wouldn’t wish on my worst enemy. Now, my best friend is going through the exact same feeling–and there’s nothing I can do about it. I’m two-and-a-half hours away, and all I can do is sit back and watch as Katie, her wonderful boyfriend Anthony, and their two dogs navigate their new normal and figure out where the future is headed. They have to figure out what’s next for Katie’s mom, too–Katie is now in charge of her mom’s medical decisions. To make matters harder, Katie’s mom is deaf. She can’t communicate with her voice, or with Sign Language. Katie is going into this without any input from her mom: she’s on her own.

Katie’s mom is an incredible woman. She’s so kind, so welcoming, she treats everyone as if they are her own. My mom said it best: “to know Katie’s mom is to love her”. I would’ve failed all of my Sign Language classes in college had Katie’s mom not Skyped me once a week to tutor me. I’m heartbroken.

Aside from grieving for Aunt Meg, now I’m grieving not only for Katie’s mom, but for Katie. Katie, my best friend of twelve years. Katie, the sweetest, funniest, most perfect, most beautiful, kindest soul I’ve ever known. Katie and I have been through a lot, but I’ve never seen her like this. She’s so strong, I don’t know how she does it. But there’s one thing I know for sure:

I’m with her every step of the way, no matter what it takes.

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.

It Wasn’t Supposed To End This Way.

Posted on by sennajandy

Greetings, squadlings.

As I sit here on my bed at 11:30pm on a Friday, with a screaming pain in my chest, my face burned raw from crying, and my phone sitting next to me as I talk to crisis counselors, I can’t help but think: It wasn’t supposed to end this way.

I wasn’t supposed to close out my college years without Aunt Meg. I wasn’t supposed to start my actual adult life without her. I wasn’t supposed to turn 23, in exactly two weeks from today, without her.

And now I have to.

As I’ve mentioned in previous posts, I know a handful of people who have passed away. I’ve been to more funerals than weddings in my almost 23 years. But there’s something different about Aunt Meg.

This is the first death that’s hit me this hard. I thought losing a friend to suicide at 19 was the hardest death I’d been hit with, but damn. This really sucks.

I’m a godmother now. My godson’s name is Felix. I never got to show Aunt Meg a picture of him–he was born after the last time I saw her. I never got to tell her about him. I never got to ask how to be the best godmother in the world, like she was.

What’s strange is, I sat with Aunt Meg and some other family members after Aunt Meg passed away yesterday. I was there for hours. And for the life of me, I can’t remember what she looked like.

She probably wouldn’t have wanted me to remember what she looked like at that point.

Which brings me back to:

It wasn’t supposed to end this way.

Be well, squadlings.

IMG_9274.jpg

Now There’s Three Cardinals.

Posted on by sennajandy

Greetings, squadlings.

When I was nine years old, my parents told me and my older brother that they were getting divorced. I did the only thing I could think to do in times of crisis: I called Aunt Meg.

Within minutes, she was at my house to deliver hugs and words of wisdom. When things calmed down, she took me and my brother to a local toy store and let us pick out whatever we wanted. I picked out a child’s knitting kit, which is a weird choice for a nine-year-old girl. I remember telling her I would knit her things: sweaters, hats, scarves…I never did.

At 10am this morning, my first best friend, my godmother, my Aunt Meg, lost her battle with ovarian cancer after two-and-a-half long years. She fought so hard. My God, she fought so hard. She had to rest–she deserves it.

I didn’t think it was physically possible for a human being to cry as much as I have in the past few days. We knew the end was coming. As shitty as it was, we saw it coming. We just didn’t think it would come so soon.

When I went to her house after she passed to say goodbye, I sat next to her with my mom, my Aunt Sarah, and my Uncle Greg (Meg’s husband). I looked out the window at Meg’s beloved bird feeder, and I couldn’t help but scream.

“CARDINAL!” 

Cardinals mean so much to my family. My grandpa loved them. He used to draw them constantly. They say, when you see a cardinal, it’s a loved one coming to say hello.

My grandfather, Meg’s dad, passed away in 2005. My Aunt Jeanie, Meg’s little sister, passed away in 1991.

As the family turned to see the cardinal I had screamed about through tears, our hearts broke again–there were now two cardinals on the bird feeder. It was Grandpa and Aunt Jeanie, coming to carry Aunt Meg home.

As I said my goodbyes, I held onto a teddy bear Aunt Meg had given me on one of our many trips to Toys R Us when I was a kid. We stayed at the house for hours–sharing memories, talking to Aunt Meg, and compiling information for the obituary we never thought we’d write.

And then we went home.

Now what?

How am I supposed to live my life without my Aunt Meg? How am I supposed to graduate college without her? How are my cousins supposed to get married and have babies without her? How in the hell am I supposed to go on like this?

Aunt Meg had the biggest heart of anyone I’ve never known. She loved everyone. She loved animals: in fact, she’s the reason I love animals. Her smile lit up a room. She was the best listener. She always, always cared about what others had to say. Frankly, if you didn’t know her, I feel sorry for you.

I don’t know what comes next. I don’t know how to live with what comes next. I don’t even know if I want anything to come next.

But, as I told her this morning as I stood next to her bed, I’m going to make her proud. I swear, I’m going to make her proud.

Be well, and tell the ones you love that you love them, squadlings.

 

Aunt Meg. March 6th, 1952–April 23rd, 2020. 

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