Stuff and things.

I’m too tired to think of a clever slug for this particular post – but I have thoughts I really want to get out. It has been a pretty busy couple of weeks, for a lot of reasons.

I am attending college and since we recently moved (again) I lost credits. It’s been nothing but an uphill battle to get my freaking B.S. but, it finally seems like I will get to finish. Between financial difficulties, being in the awkward place between ‘poor’ and ‘middle class’ where you can’t afford to pay your way (and you know, still eat), but you apparently make too much to get aide, my health and other factors, it’s been fucking ridiculous.

You see, in high school we were told a degree only takes 3-4 years, but most people take 5 years. I was like “I’m not going to be that person! I’ll do it in 4!”

I was that person.

But not because I was indecisive, or unmotivated. But that life literally threw everything it had at me. My freshmen year I attended full-time, worked 2 hours below full-time at Walmart to pay for school, and chemotherapy for liver disease. After my first semester, I got married and moved to Alaska with my husband. I started back up the next fall and struggled with increasing pain, incompetence from doctors and ensuing depression related to the fact that I was a 20 something in inordinate, inexplicable pain. In 2012, I attempted suicide because I was in so much physical pain and I had been told by various physicians it was in my head – I wanted to die. Society had failed me. And living in pain without answers was not something I was ready to do. Somehow though, my husband managed to literally and figuratively save me. All this time, I was attending school in Alaska. It was still a constant battle with physicians and my own feelings of failure, inadequacy, grief and anger. I did my part though. I went to therapy. I got help. I kept fighting. In 2014, I was diagnosed with a rarely diagnosed brain condition – and I was dismissed as a patient by my neurologist because she was misinformed and incompetent to the nature of my condition. Puzzle pieces began falling into place. A physical therapist noticed my extreme range of motion and the words ‘Ehlers-Danlos Syndrome’ were uttered for the first time.

But then my husband was restationed back state-side in Virginia. I continued school, worked part-time at a child development center to earn some money so we could move, and put my health on hold. I still attended even during my move to Virginia. And unfortunately, because I had worked, I lost most of my financial aid and was only able to attend half-time this last year (which worked out semi-okay). So I started at my third university and in my first semester here in VA, underwent my brain and neck surgery last November.

This most recent semester has been a whirlwind with recovery, doctors appointments and decisions. Now, it’s almost the end of the term, I’ve managed to sort my financials for my final year of school (five years later, dammit) and now… I have big decisions to make. You see, I’ve wanted more than anything to get to go to graduate school. I’ve looked into PhD programs that grant assistantships and waive tuition.

But yesterday, I had an appointment with my new neurosurgeon – I have two, I’m such a lucky duck – and learned my MRV (magnetic resonance venogram) revealed I have narrowing of the blood vessels in my brain. This explains the new pressure headaches, vision loss, and other array of horrible symptoms I’ve had. Sadly, this is pretty common for patients with Ehlers-Danlos Syndrome. EDS effects literally every system in the body, including our blood vessels. Mine are narrowing due to faulty collagen. This can lead to a number of things and the scarier, and more uncertain things: strokes and transient ischemic attacks. So, now, it’s the waiting game for my angiogram to get a better look at the vessels in my brain before we decide if I should get a stent to relieve pressure and help prevent further narrowing and/or blocking.

This would be a second brain surgery, although an endovascular type of surgery, still has it risks and still weighs heavily. I’m not scared about the surgery itself, but rather the looming uncertainty and consequence of the larger picture – the surgeon yesterday said something profound and sad.

“I can see you’re still very much in the beginning of your Ehlers-Danlos journey.”

No he wasn’t saying that about my diagnosis. He wasn’t talking about the pain and struggle I’ve already faced. He was talking about the fact that comparatively, I am still very well off and the deterioration, once it starts it is going to snowball so fucking fast, I will blink and suddenly, it won’t be quite so. I am a walking time-bomb. My body is waiting to blow. There is no question about if. It’s all about when. I could have years before my GI system shits out and I end up on a feeding tube. Maybe I don’t need another corrective craniectomy for ten years, but it will probably happen. Maybe it only takes until I’m thirty to need that cervical fusion that is likely in my future.

Until yesterday, I had no doubts about trying to get into a PhD program. But then after finally getting some sleep, I woke up so tired and the magnitude of those words washed over me. Is it a good idea to keep going? Do I need to be thinking of my health instead? Will I be able to handle it? What if I need another surgery during the post-doctoral program?

Goddamit. Now I am doubting everything.

I know my husband would support me no matter what. But that’s the problem. This man would carry me up our three flights of stairs if I asked, even if it hurt his back, or made his knees ache for days.

I just don’t want to live my life regretting my wasted potential. And I don’t know how to make myself accept that. Of all the limitations I know I have, this is one that I am just not emotionally or mentally prepared to accept.



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Occasionally, I write things and stuff. Sometimes they are even witty. I'm stupidly in love with my husband and a crazy cat lady. I have Ehlers-Danlos, Chiari I malformation, postural orthostatic tachycardia and autism. My words are shaped with profanity, wit, and sarcasm, because life is just such a bitch sometimes.

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