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.

Fuck.

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Beep beep boop.

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That’s what WordPress says when you click to make a new post.

I apologize for a bit of silence in my journal. I don’t know about you, but sometimes my mind doesn’t have a clever phrase or thought to deal with the ramifications of humanity’s fragility. I mean, let’s be honest – most of us have an originally brilliant phrase or analysis of some situation only once in awhile. Hardly ever, even. We tend to feed on those brief droplets of inspiration, squeezing the creative lifeblood out until it withers and dries up into nothingness.

I have not had one of those little nibbles of inspiration in awhile. I admit, I have been depressed. This isn’t really outside the realm of normal for me. The thing about living with chronic pain and illness is… you will at some point end up depressed.

I’ve felt like there was something I have wanted to say or flesh out into some form of art for almost three weeks. But each time I sat down to write, draw or work in photoshop, I just kind of blankly stared. It has been similar to an itch you can’t scratch. I had two of those for four days. I think it has something to do with coming off of an anticonvulsant and nerve medicine. This shit seriously fucked me up for the three weeks I was taking it. It made my entire face hurt. I never knew the edges of your teeth could hurt until I took this medication. It made everything significantly worse. I finally stopped taking it because I couldn’t handle it anymore. Unfortunately, coming off Lyrica can be as bad as starting it. I can’t say for certain my itches were caused by coming off this medicine. But I wouldn’t be surprised. There was a small patch, probably one inch by one inch, that itched so deeply on my ankle. If I scratched it, it would hurt, but if I didn’t touch it it would just itch like fucking crazy. There was no rash, bite or anything. No dryness. Nothing. Then two days later, same thing but in my left nostril. The itching has mostly subsided, but both spots hurt now. These were the most insane itches I had ever experienced in my life.

Riveting story, right?

I guess that’s all for now folks. I hope to have some more stuff for the non-fiction book I’ve been working on soon. I have also been considering a fictional blog because to be honest I fucking miss fiction writing.

Toodles.

Thunderclap Awareness

This post is copied with the permission of the original author, a friend on Facebook.

I know EDS Awareness Month is officially over, but I’d really appreciate you all clicking to support this EDS Thunderclap campaign. If you don’t know how Thunderclap works, it’s really simple and amazing. You click to support via Facebook (or Twitter), and on June 15th at 12:00PM, everyone who has signed up will have a Thunderclap message about Ehlers-Danlos Syndrome posted to their timelines all at once. Can you imagine the awareness potential here? We could possibly reach 10,000 people or more, all with the click of a button and literally no effort on your part. It’s one of the best uses of social media I’ve ever heard of, and I’d love for you guys to participate. EDS affects 1 in 5000 people. We’ve had several people in our support group pass away from EDS complications recently, because many doctors aren’t aware of the risks associated with it and have never knowingly treated an EDS patient. There’s no cure for our genetic mutation, but if we can continue to raise awareness, the outcome in catastrophic events could improve. Please help!

https://www.thunderclap.it/projects/27295-we-are-stronger2gether?locale=en

I think Thunderclap is a pretty neat feature, I only just learned about it. So, if you could take the time to press the button that would help so much!

Last Day (Not)

It is officially the last day of May and coincidentally, the last day of Ehlers-Danlos Syndrome awareness month. It has been a good month and I have been able to connect with many people, illustrating the stark reality that is chronic illness. But we are not done, this is a lifelong fight for awareness – not just one month out of the year. However, in the spirit of awareness, I hereby dedicate this final post to the final day.

Wouldn’t it be so nice if we could go, “Today is the last day of our illness. Tomorrow is the first day of health, happiness and life.”?

I noticed some people in my life do not like discussing depressing prospects. They say things like, “Wow, S. that’s really sad…” and they seem uncomfortable, like maybe I should just stop writing and talking about it. Yes, well living with chronic illness is very sad. It can also be very happy. I need to talk about it, for myself. If you are uncomfortable with the realities of life, which is pain, suffering and death, then perhaps you should reevaluate your position in life and yourself. There is nothing, in my eyes, healthy about turning your back on someone, or some situation because you are uncomfortable with depressing stuff. Life is a mixture of sadness, pain, failure, anger, resentment, but also happiness, success, empathy, love, laughter and greatness.

In any case, I will not stop talking about my life, my illness – the depressing stuff or the successes, happiness, love and laughter.


Quick side bar, I would like to link a really awesome post by a fellow zebra. Her struggle is very different from mine, however, she also suffers from hypermobility type of Ehlers-Danlos Syndrome. I am linking her post to illustrate the vast differences between patients, even patients with the same type of EDS. You can read it here. She is a young woman, a bit younger than I, who has severe gastrointestinal manifestations in her Ehlers-Danlos, nearly killing her, resulting in feeding tubes and a very limited life. She is UK based and has been writing to share her story and raise awareness about how sinister this genetic disorder can be, especially if left unchecked.


So, as a part of my integrative care for Chiari and Ehlers-Danlos, I started seeing a psychologist. I have already undergone some intensive therapy, spanning over two years, including a couple facilitated support groups. But, in the interest of showing my primary doctor how serious I am about integrative care, I sought out a clinical psychologist to manage the social and psychological implications of living chronically ill. She is an okay psychologist. It isn’t so much that I feel I need to see a therapist at this moment. I am in the best place I have ever been in my life, emotionally, socially and psychologically. But the truth is, living incurably comes with random, unforeseen complications. That is the very nature of both of my conditions.

Anyways, in the second or third appointment, she asked me, “What is it like? Living with these conditions?”. She stared at me, taking a drink from her coffee while waiting patiently for an explanation. I just sort of laughed and stared back at her for a moment. In the previous appointments, I had to tell her my history, including medical. In 2011, I underwent 6 months of self-administered chemotherapy for liver disease (no, not cancer).

So, after thinking for a moment, because I genuinely wanted her to understand, I said “it’s like chemotherapy, that doesn’t end”. She seemed shocked, like as if my previous descriptions of EDS and Chiari had been said in an alien language, or maybe that she thought it wasn’t as bad as it sounded.

“You know, you deal with splitting headaches daily, joint pain daily and random, unprecedented bouts of nausea and even vomiting. Standing up hurts. Sitting down hurts. And you’re just so fucking tired, like you haven’t slept.”

I think she finally got it, when I related it to my experience with chemotherapy.

The description stands true today. But I must admit, my symptoms have actually improved as of late, headache aside.I had an incredibly bad flare in the end of 2013 through the beginning of 2014. I used a cane and I almost never left the house. My husband had to help me shower many days and the pain made me cripplingly depressed. Things began letting up in the summer of 2014 and although it still sucks, it all still hurts, I am not that bad (for now). The reprieve has been nice and finding answers has definitely helped tremendously. Things are still improving, but only because I am finally getting the medical attention I need. My primary prescribed me beta-blockers for the associated autonomic dysfunction and just in the a week of being on this new medication, I am already improving immensely. I am finally sleeping better, my blood pressure and heart rate aren’t doing gymnastics anymore, and I don’t feel like I am going to pass out every time I take a shower. And that is just one facet of my illness being treated. I can’t imagine what will happen when I am under the care of a clinical geneticist. This is great. I can only hope for such improvement when I go to John Hopkins.

Don’t get me wrong, I still have my struggles and I will continue to struggle in the future. You will never be able to ask me, “So are you better now?” and get the answer yes. That will not happen. There is no cure. This is progressive, but my victories are moments like these – moments where it is manageable, moments where I can do things and be happy. I know this summer I will begin to have even more victories, because I will have my brain surgery(ies) needed to alleviate my headache and to slow the progression of the Chiari malformation. Moreover, I will continue to make connections with wonderful, supportive people who do not shy from the gritty-shitty aspects of life.

I have been fortunate since moving to Virginia, especially so. I have made some amazing new friends, some through support groups and some who work with my husband. A special shout out to my best friend from Alaska, you know who you are boob, for always enduring my 2am antics and just wholly loving me, supporting me and of course for always being there, when I needed you the most! Another quick shout out, to Fred, a new connection who can relate in so many ways to the struggle that is Ehlers-Danlos. A new friend who I know will continue to be there and who will endure through the same battle, who displays such astounding empathy and who checks on me regularly!

Finally, my husband who has shown me true strength, compassion, empathy and death-do-us-part love in our marriage. I know I would not have survived, thrived and lived to become the woman I am today without my husband. He stole my heart over six years ago. He gave it back, in better condition than I could have imagined and he has truly endured through the struggles many relationships may never face. He has shown weakness, strength, compassion and he has lifted me up with his love. I am so very lucky to have him in my life.

Today is the last day of Ehlers-Danlos awareness month. But it is not the last day of my illness. It is not the last day of voicing the pain and the victories I have and will face.

A Shameless Plug!

Okay, so I have been secretly working on a project. Until recently, I did not realize how attainable this dream was going to be. Now I have fully actualized it and I am ready to divulge a small portion of this dream. I have secretly been working on a non-fiction account, illustrating the existence that is chronic pain and illness. My blog has been a great way for me to feel and chronicle my life in a cathartic manner. But the reality is when it comes to pain, those who live it 24/7/365 rarely have a voice in the discussion about chronic pain, how to treat it, how to cope with it, etc. So, now I hope to give the millions of us out there, who silently suffer, a voice in the discourse!

A snippet from my project:

It is not my goal to alienate allies and supporters of chronic pain patients, but to illustrate to the masses, including our allies, the little things they may say or do that crush our spirits. I live in a state of empathy and the majority of the time, I recognize people mean well when they say things to me. Unfortunately, most of the time, they ignorantly presume telling me “Wow, you’re such an inspiration!” is somehow helpful, consoling, or will make me feel better about myself. Pro-tip: it isn’t, it doesn’t and just stop. This is a bitter pill and I am sorry, it will hurt, but try not to take it so personally. You have been conditioned by social media to martyr cancer patients, children with leukemia and other scary medical conditions. Try, if you are able, not to internalize this. But I have the right to define my existence – you have the right to define your own. This state of being is entirely frustrating, overwhelming and exhausting.

Enjoy! More to come, I promise!

– S.

In this moment

Well, it’s been an exhausting week and it’s only Tuesday. That’s fucking rough, I think. I had an appointment with my new neurologist yesterday. It was a good appointment, as far as things could have been. I mean, he did have to Google my condition – but at least he did that, instead of just pretending my condition doesn’t cause actual physiological issues. He ordered the appropriate tests, new brain and neck MRIs as well as a CINE MRI, so I can follow-up with neurosurgery in the coming months.

And as good as it was, I am still scared as fuck for the future. I applied and was accepted to my new university (hopefully the last, before I graduate). I just really want my degree, I really want a future where I can work with people who struggle in the same way I do. But I’m so afraid I’m never going to make it, that I won’t survive the ride or that I will become disabled completely before that day comes. It will be such a big deal for me to graduate. For one, I will be the first in my immediate family to obtain a complete higher education. It’s not that my family hasn’t made something for themselves. My mom managed to get a high position in a civilian job for the federal government, without a degree, which is such an amazing feat. She got there with raw talent, dedication, determination and skill. That is amazing. However, that doesn’t change what I want – which is a specialized education with an opportunity to work in clinical research. I can’t get there without a degree. I love the brain and I am excited about uncovering knowledge. I want to be a person who shapes a field, or a perspective on the brain. I don’t need to make some flashy discovery or break ground in science. I want to help bring some aspect of knowledge to life, for someone, anyone.

I am so afraid once I have this brain surgery, I won’t be the same. I won’t be as able, mentally or physically. I am already struggling to keep up with my age group because of my medical conditions. And I envy everyone around me, who has already graduated and is working on their graduate work. All the people from high school who have already done so much more. I know I have done a lot, given my circumstances. Many people tell me I am an inspiration, but I don’t feel that way at all. Maybe people just have very low standards for what inspirational means, or they think they have some concrete understanding of who I am, what I’ve done and where I’ve been.

Getting my degree isn’t just about being able to work in my dream career. It’s actually so much more than that. You see, my husband has selflessly sacrificed years of his life working in a career he isn’t exactly fond of – for me. So, I could the medical insurance I need. I mean, obviously, that wasn’t entirely his motivation for joining the military. But it definitely played a large part in it. And now, he is finally starting to hone in on what he wants to do for a career and life. I so desperately want to return the favor, I want to be able to support him so he can pursue his desires. He wants to get a degree in mechanical and electrical engineering. I want him to have a career he loves, not one he resents sometimes. And what if I can’t? What if I cannot measure up and give him the gift he has given me?

It has taken me so incredibly long, years, to actualize that I am this capable and intelligent woman who has so much to offer the world. I have a unique platform in life, with an ability to empathize and feel so deeply for those who struggle. And facing my genetic condition and my brain condition, I feel like I will never get the chance to give everything I have to offer the world. I feel like I will never reach the point where I can do what I was always meant to do. It is crushing my soul and I feel like I cannot breathe. In this moment, it feels like I will not make it. I know deep down that isn’t true and tomorrow I am sure I will feel like I can do it all again. I won’t feel weak and momentarily be frozen in fear. I know tomorrow, I will continue to give the world what I can, until I can’t anymore. But for now, in this moment, I’m scared.