I am honestly terrified for this semester. In so many ways, this is my last chance to turn things around. But I am so, so very worn– physically, mentally & emotionally. Simply getting out of bed or responding to text messages seems too hard some days, nevermind successfully functioning as a student. I know that worrying fixes nothing, and I’m trying not to get too ahead of myself: it’s only been three days. But before the semester even began, I felt like I was drowning. I’m working my very hardest and trying to keep my head up, but I really don’t think I can do this…
As the morning light peeks through the window and you stir into consciousness, sometimes for a fleeting second, you forget.
But you are jerked back into reality as your heart begins to pound– head spinning, choking back acid, muscles aching, nerves burning.
Most days, you lie there for a while, trying to breathe through the pain and gather enough strength to go on about your morning routine.
But a big part of you wonders why you bother to get up at all.
You drag yourself from bed to fight the same battles each day. No end in sight, simply running on a treadmill uphill, hoping to maintain an unfortunate baseline.
It all just becomes so, so very tiresome.
Your physical health continues to deteriorate as your spirit is crushed under the weight of a crumbling sense of self.
You know there are people you would let down if you were to leave. There are those who would suffer if you were to suddenly cease to exist.
So you press on, trying to ignore the fact that you’re trapped– fake smile, one foot in front of the other.
As time passes, your increasing inability to keep up with the world pulls you deeper and deeper into the pit of isolation.
People grow up, get married, move away, retire, or simply forget your existence completely.
You watch as everyone you love fades away.
As night falls and you are left alone with your thoughts, your chest aches with the thought of how alone you have become.
You feel the sting of being unwanted, unneeded, outgrown, forgotten, abandoned.
But as the night turns to dawn, you realize there is no one left to let down. Or at least, there is no one who would have life ripped out from under them if you were to no longer be.
Your body is broken– your very being exhausted and worn– but you close your eyes and let out a sigh of relief.
Tears gilde down your cheeks and a smile slowly creeps across your face as you realize you may finally rest in peace.
[Just some musings from a brain and body currently consumed by painsomnia. No worries– I’m not going anywhere anytime soon. Keep fighting, guys.. ❤ ]
I had the BEST time with these lovely ladies today! I cannot even begin to express how needed this get-together was…not just for me, but for all of us. Spending time with people who truly get it– talking, laughing, commiserating, joking, and just BEING, no strings attached– is truly the best medicine. No one flinched when someone whipped out a nebulizer or strapped on a neck brace or flushed their port or tripped over their tubing. Laughing, we raced up to help each other (usually just adding to the chaos…lol, but the thought was there). It was the first time in a long time I felt genuinely happy.. ❤
Today I had another slew of appointments, one of them being with my urologist at Duke South. It was a pretty uneventful appointment, but I am incredibly frustrated with the state of my urological health…
I have my THIRD infection in two months! The first two were complicated infections with uncommon strains of bacteria, and they really kicked my butt. This most recent culture grew Klebsiella pneumoniae which is a pretty common culprit of UTIs…but it is a difficult bacteria to get rid of nonetheless.
I honestly do not remember what it feels like to not have a UTI! My bladder and kidneys are constantly hurting, with pain ranging from slight soreness to knock-you-to-the-floor sharpness.
My urologist reassured me today that I am doing nothing wrong to cause these problems.
These infections are a result of EDS causing my bladder to be ‘too stretchy’ and dysautonomia affecting nerve signals to my smooth muscles. She also said that prednisone is likely complicating things as it is an immunosuppressant.
As far as managing my condition(s) goes (in this case, taking prophylactic antibiotics and self-cathing), I am doing everything right. I suppose knowing that makes me feel a little better…but in a way, the fact that this is not my fault increases my frustration because there isn’t anything I can do to improve the situation… agh.
On a more positive note, appointments with mom are always an adventure! She’s truly a character, that one. Here’s a video of some post-appointment shenanigans with my partner in crime.. 🙂 Love this crazy woman so much! ❤
Just realized I never shared this! Check out my amazing spoonie sister Em’s blog post about our experience attending Duke Children’s Hospital Prom…and all that went on ‘behind the scenes’ to prepare and recuperate… 🙂
Last Saturday (April 22nd) Duke Children’s Hospital held their very first PROM! I had the amazing opportunity to not only attend but I got to attend with 3 fantastic ladies that I have gotten to know over the last year online! We share quite the list of medical diagnosis’ and life experiences.
Prom prep started about a week before the actual prom. Cancelling doctors appointments, scheduling doctors appointments, ER visits, lots of medicine, and rest rest rest!
Pre-prom prep (IV fluids, Nutrition, pain meds, steroids and prayer!)
While we got ready for prom before getting our dresses on and doing our make-up we pre-medicated and talked about how much we get it. There was no need to explain anything or feel ashamed because they live it too! (Though I so wish none of us had to, it’s nice to not feel so alone).
We all meet online in…
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May is Ehlers-Danlos Syndromes Awareness Month! I plan to put together an awareness video eventually…but in the meantime, here’s a sneak peak at some weird EDS hand movements. Notice how my hand almost looks like it’s turned inside out? That ‘flying swan’ hand position is like our EDS gang sign.. 😉
After a difficult semester full of medical twists and turns, I am needing to request a retroactive withdrawal. To begin the process, I had to submit a statement detailing the reasons why I was needing to withdraw.
I found myself struggling for words and anxious about the withdrawal process, so my mom kindly got on the phone and tried to help me figure out how to phrase the letter.
After rattling off a long list of symptoms, procedures, and medical vicissitudes, she finished with:
“This is something I’ve been dealing with for the past 5+ years…”
Wow, she’s right: 5+ years of this crazy, inconsistent life.
5+ years of waking up to fight fatigue, widespread pain, nausea, dizziness, tachycardia, low blood pressure, vertigo, migraines, dystonia, syncope, anaphylaxis, chronic infections, subluxations, dislocations, cognitive impairment, tachycardia…
5+ years of taking more medications than most 80 years olds. Drugs to treat symptoms and disease processes and then even more drugs to treat side effects of those drugs.
5+ years of needle sticks, blown IVs, invasive therapies, painful procedures; “eating” through a tube in my intestines; relying on a wheelchair (though using it less than I should due to fear of judgement); stabbing myself with EpiPens, grabbing at my throat gasping for breath; faking smiles, forcing laughs and constantly hiding behind an “it’s all good”; trying, and usually failing, to balance health, family and school, struggling not to define my existence by my disabilities…
No wonder I’m exhausted.
Had an AMAZING night at Duke Children’s Prom with my incredible spoonie sisters, Nicole, Em, & Kayla! We’ve been talking online via Instagram & FB support groups for over a year now, but this was the first time we all got to meet up together in person!! It was truly awesome. It was such a blessing to talk, laugh, dance, and just be weird together! Love these beautiful ladies so, so much.. ❤