Doctor appointment day.

gloomy forest by gorchakov.artem

Things change today, one way or another. I’m starting this post before my doctor appointment, I’ll post again afterward so I can blog about how it went.

I’m not as gloomy about the thought of upping my medication as I have been. I guess the pain is just too much now that it makes me feel option-less. Just getting through the day lately has been an enormous challenge and it’s exhausting. I wake up in the morning after another largely sleepless night and feel utterly melancholy at the thought of doing it all over again.

I’ve been spending most of my days this week sitting, hunched over forwards, because it’s the only way I can lessen the pain in my back. Of course it’s uncomfortable in a dozen other places but it’s the best I can do right now. I can’t stand very long at all before the pain is nearing unmanageable. 

Thanks again for all of your support! It really does mean the world to me. I’m hoping things turn around soon, I’m tired of the negative posts. I’d like to have something happy or uplifting to say! Hopefully soon, yeah? :)

Note: I know I just posted this song (with it’s official video) but afterwards I found this amazing animated version by an incredible artist named Ryan Woodward. I love it!!

Another Tuesday night.

IMG 0135

My old buddy, always keeping me company when I’m down. Today consists of extreme back pain, a headache and cuddles…and hopefully some drawing/coloring.

A break – finally.

My body finally dealt me a break yesterday; I woke up and my ribs had gone back into place! I was so relieved and lifted. I was beginning to fear that they were never going to go back in and was wondering how I would live like that for the rest of my life. When I’m scared my mind tends to skip ahead to the hypothetical, something that I’m working on.

My pain level is still quite high compared to usual but I imagine that it takes a little while for your body to recover from something like that. I’m exhausted but except for last night, I haven’t been sleeping much. I have that unsettling haze of gloom hanging over me, the kind that you have when you wake up the morning after something really bad has happened. But, at least now I can see a light at the end of the tunnel. A small light, but a light nonetheless.

Treading water.

Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and four days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell trying to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I want need the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thoughts and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

In the end, pain is a lonely thing. 

That’s good to know.

After my wisdom teeth surgery I was advised to start taking my tylenol 3 every 4 hours along with either my muscle relaxers or the anti-inflammatory I was prescribed (rotating them out each time). I’ve mentioned on here before that I generally don’t even take my pain medication everyday unless I absolutely have to – they’re no good for you and my stomach’s got a long time to put up with them yet. But, aside from making the jaw/head/face pain from the surgery bearable, I also noticed for the first time in months that the sometimes excruciating, ever constant pain in my back was almost unnoticeable. It was never gone, but it was low enough that I didn’t think much about it compared to the other body pains. 

Ah, but the assumed catch – as soon as I start weaning back off of the meds and down to my regular doses, the back pain came back with a nasty vengeance. I didn’t even know that it was possible to get it down that low, but it doesn’t really matter because constant pain medication is just not an option long term. So, I kind of wish I didn’t know that. I feel like I finally saw a light at the end of the tunnel but knew that I’d have to turn back and go the other way. How unfair is that. I am thinking about talking to my doc about nerve blocks for the pain. Have any of you tried them? And if so, how did they work and were they worth it?

On a fairly higher note, I can eat again! And the jaw pain (and the general pain of having your wisdom teeth removed) is dissipating. My bruises are almost gone which is good because I was getting a lot of concerned looks at the grocery store. I wanted to walk around with a sign saying that it was from the wisdom teeth. From the glances that I got I think people seemed to be thinking that someone had beat on me a bit! The entire wisdom teeth/jaw healing thing actually went much better than I thought it would. The healing was slower than the norm but I was told to expect much worse. I’m getting a little bit tired of the saltwater rinsing, maybe I need to ease up on it because I’ve been doing it religiously. But I keep hearing disgusting stories about people getting food stuck down the tooth holes and it going rotten. Sick. I don’t want that to happen!

Anyway, I’ve been up forever and I have a bad feeling that I wont be falling asleep any time soon. It’s still a bit early yet but I just have that…feeling, the one that I get when my insomnia is kicking in. I’m going to out of town to stay with my amazing aunty on Wednesday though – a fellow chronic pain sufferer and nocturnal dweller – so I’ll have some good company during my long nights. I’ll tell you more about her later, she’s too much awesome for just a sentence or two.

My posts have been so dreary lately, so, I thought I’d brighten this one up a bit with a picture. I’d have just taken my own colorful picture of the flowers I bought my mom for Mother’s Day, but it’s late and the lighting in here sucks. Maybe I will tomorrow.

Spinal MRI Results

I wanted to do an update as soon as I got my spinal MRI results but I ended up being stuck in my bed with another awful headache. The pain was so intense that every time I tried to move I threw up. So, in bed I stayed.

Anyways, it’s quite a bit better now. My MRI results surprised me. I thought that I’d had the potential results all mapped out but apparently not. You might recall me mentioning that the MRI was ordered to check for dural ectasia, another common feature of Marfan Syndrome. But instead the results show that I have a very large synovial cyst on the L4-L5 region of my spine. The cyst is so big that it’s compressing a nerve. The more I learned about this type of cyst the more confused and surprised I was. It’s very uncommon to get them if you’re under 45 and by far most commonly occurs in people 60 and over. This is mostly because it’s caused by spinal degeneration. From what I seen while researching on the computer there are only 3 documented cases of synovial spinal cysts on a person under 20. Because of their rarity, my age and my tissue disorder, there is hardly any helpful information that I can apply to my situation. I’m hoping to see a spinal specialist and get some questions answered. I’ve had severe lower back pain for a while now, and the last couple of months it’s continually worsened. Walking/standing for 20 minutes at a time can be a major challenge. I’ve been surviving with the pain – as unpleasant as it is – and me and my doctor have talked about avoiding surgery when possible in order not to mess with my already fragile tissue. But she said if the cyst continues to grow and the pain continues to worsen that surgery may be the only option. Cutting out the cyst would be fairly pointless, with my tissue another would form in no time. The only other way to fix the cyst would be spinal fusion, major spinal surgery, which I dearly hope to avoid. The region the cyst is on is also the part of the spine that moves the most. Fusing the joints together would change the way that my spine moves entirely. But I don’t even know if the same options apply to me as other people because of my tissue disorder. Sometimes I really wish that I had access to a specialist in Marfan Syndrome and tissue disorders. It’s times like these that I feel really alone with my disorder and lost as to how to get the best treatment that I can.

I had a hard time with the results. I was prepared to be told that I had dural ectasia, that was more to be expected. I wasn’t prepared to find out that my body is falling apart in even more ways than I had thought, and ways that are so uncommon. The tissue in my spine is degenerating and I’m only 18. I have a long way to go in this body and it’s scary to have it aging so quickly on me.

If anyone else has been diagnosed with one of these cysts at a young age I’d love to hear about your experience.

The MRI didn’t detect any dural ectasia but we (me and my doctor[s]) didn’t know that it’s best seen with a standing MRI. None of my doctors even seemed to know that those existed and when I googled it I found out that only one place in Canada seems to have one. I’ll talk to my doc about this next time I go in. It doesn’t really matter to me whether I’m diagnosed with DE or not though. There’s no fix for it other than management of pain which we’d already be doing. Before I mostly wanted to know for diagnostic reasons but I don’t need it for that anymore either.

[Any medical terms and/or definitions featured on this blog have been thoroughly researched by me as to not lead to any false consumption of information by the reader. Though, that aside; I am not a doctor and the medical information on this site should not be taken as a substitute for the advice of medical professionals. If you’re experiencing any health issues don’t hesitate to contact your doctor.]