A long night.

The last couple of days have been pretty lousy. Sorry, I know I haven’t been blogging anything very positive lately, my body just seems to be going through one of it’s really low points.

I’ve been dealing with some major urinary retention issues which are just miserable, especially during the night. Even when I can hardly go at all I still have to go often, which is a terrible combination. I spent the entire day yesterday thinking I was going to have to go to the hospital again like the last time this happened.

This is how my night went:

12:30 am I go to bed.
1:30 am I’m almost asleep but I have to pee, which I spend the next hour relentlessly trying to do before I actually can – though not very much.
2:30 am I’m back in bed but I can’t fall asleep.
3:30 am I have to pee again which takes me another 35 minutes or so.
4:15 am I’m back in bed but my bladder hurts and I still can’t catch any sleep.
5:30 am I get back up again for another bout of the same.
6:10 am I finally get back into bed and manage to fall into a light sleep.
7:00 am I’m awake again.
8:00 am I give up for a while and try to go pee yet again with more difficulty.
8:30 am I head back to bed but can’t fall asleep and am in a lot of pain.
10:30 am I get up again to try to go pee (for what feels like the millionth time).
10:50 am I get back into bed and still can’t fall asleep.
1:00 pm I finally just give up and pull myself out of bed.

My doctor thinks this is probably from my back. This time we’ve ruled out all of my medications as the primary cause so I’m afraid that it is too. I’m feeling really frustrated and exhausted. My neurologist’s appointment is still so far away and my referral to the urologist to make sure nothing else is causing this seems to have gotten lost on it’s way.

Lung issues and more spinal problems.

A few days ago we received the medical records/results of my recent specialist appointments and tests in Vancouver – they weren’t exactly what I had hoped.

The X-ray showing my mid and upper spine shows vertebrae wedging (compression of the vertabrae caused by degeneration) along with Spondylosis (degenerative osteoarthritis of the joints between the centre of the spinal vertebrae and/or neural foraminae). This was a bit hard to digest because we knew that my lower spine had some degenerative problems (large synovial cyst, uncommon in those under 65, very rare in those under 40) but thought that was the extent of my spinal problems. I wasn’t expecting to hear that my mid spine looks like that of a middle aged person already too. My lower back’s been hurting me more than anything these past few months and it’s been continually getting worse. It hurts up higher too but not very much, hopefully it’ll stay that way for a long time yet. 

I was more taken aback by what they found in my lungs. The bases of both of my lungs have atelectasis which is: the incomplete expansion or collapse of parts of or a whole lung. Collapsed lungs and pneumothorax are known to be more common in tissue disorders than in the general population, but I had no idea that there was anything wrong with mine.

Overall I’m oddly calm about the whole business. I took in the results, took some deep breaths and accepted it. It’s kind of sad to say but this is what waits for me. My condition is degenerative and it’ll only deteriorate over time. More and more things will start to show up on tests, more joints will dislocate, I’ll be in more pain. I know this and for the most part I’ve made peace with it. I have my moments of despair, but this is the way that things are and I have to learn to find happiness despite it.

Hiking By Justinsanity

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. 

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.]