Crown of Thorns

I’ve been suffering from insomnia like none other – I can’t even remember the last time I actually really slept. So, here I am, up in the middle of the night with a horribly painful subluxated rib and no ability to escape from it with sleep. Instead I’ve been drawing my little heart out whenever I can and listening to music. I can’t even believe I’m typing this but; it’s not so bad.

I wish I had a river I could skate away on.

Insomnia is rearing it’s ugly head tonight. I could see this spell coming from a mile away, but it doesn’t make it any easier to deal with. The normal amount of hours daily is more than enough pain to deal with, but when you can’t sleep it just adds that much more.

Lucky for me I have my music to keep me company. I’ve had Joni Mitchell on repeat for the last week or so and it’s been making the time pass more easily. “Blue” is definitely my favorite album of hers’, so many of my favorite songs are on there. Her voice and lyrics still give me the chills every time I hear her. It’s the perfect music to listen to when I want to curl up in a ball and tune out the bad in the world.

The doctor appointment.

I first have to say: forgive me for any spelling or grammar errors that may be in this post. I haven’t been to sleep yet and am desperately and overwhelmingly tired.

I have mixed feelings about my doctor appointment today. By the time I was called in it was clear that my doctor was running behind and there were already people waiting for their appointments despite the fact that I had 4 appointments booked back to back. At first she suggested I be sent to a pain clinic until I informed her that I had already graduated from a pain clinic program at the Children’s Hospital a few years prior. I told her that I remember all of the suggestions and tools that they gave me and doubted that another of the same experience would be very beneficial (not to mention that the travel is very difficult financially). That was fine and she seemed in agreement.

I handed her the things that I had written out earlier and explained how my concentration difficulties, pain and lack of sleep made writing my thoughts and experiences out the easiest way to explain my situation thoroughly. She skimmed through them – more along the lines of glanced – fast enough that I knew she hadn’t taken in hardly anything that I had written. This was a bit frustrating and insulting. She didn’t even bother to keep the paper to read later, instead she handed them back to me.

My biggest problem with the appointment is this: my doctor seems very intent on pushing Dilaudid on me, as a means of regular pain control (instead of sporadic use). She’s continually done this despite my reasons for not wanting to replace my tylenol 3s with the Dilaudid (Tylenol 3s have been my more regular pain management opioid for many years). My view is this: I’ve been controlling my pain with the T3s for six years now, and have generally been on the same dose without any significant tolerance increase. However, with the Dilaudid my tolerance grows staggeringly fast and compared to the 6 years with the T3s and no tolerance increase, I seem to have to up my dose of Dilaudid at least twice a week (which is just not okay: to go from taking 2mg once a day to having 6mg twice a day hardly work within a few weeks). Now mind you, this happened when my ribs were subluxated and I needed to be constantly medicated because of the intensity of that pain. 

I’ve had a hard time coping with the needed amount of medication since having taken the Dilaudid regularly.  Especially when I’ve been so strict with my medication intake all these years and spent so many days desperately needing more pain relief while not allowing myself to have it. I know that may be confusing to some people – why I wouldn’t just take the medication when I need it – but if you think of the fact that I’m only 19 and will be in pain for the rest of my life, it’s just not a practical solution. My needed dose would increase to an insane amount if I regularly took medication for the rest of my life, and eventually the pain killers lose their intended effect on pain, often causing more of it in the end.

On top of this, Dilaudid also gives me fairly severe nausea to the point where I need to take gravol with it everytime or I just end up throwing up, and even with the gravol my stomach feels dreadful. My Tylenol 3s don’t do that at all. Both this appointment and the last I’ve explained this to her but it seems to go right past her head. She doesn’t acknowledge what I’ve said at all and has both times ended the appointment while still advocating for more Dilaudid use instead. Last time I thought it was just because I was a fit in appointment and she was an hour behind, but the same thing happened this time.

She ended up suggesting that I try what is known as a “drug holiday”. This is when you cease all use of your medication (she said 5 to 6 days should do the trick – I’ve read that 10 or so is around the target number of days), this is fairly effective in lowering your body’s tolerance buildup. Coincidentally I’m actually already on day 7 of the process. After my ribs had gone back into place I did my research on the subject in order to find a way to get back to my previous dosages. The 7 days have been very trying and painful – I’ve come close to giving up several times everyday since the beginning. But, here I am still managing it. It’s cost me my sleep – I can’t be in my bed for much more than 6 hours before it’s too painful to lay there anymore and I wake up every hour or so in significant pain. I’m going to have to buy a mattress in the next few days or so (mine is in horrendous shape). I think that a hospital bed would be highly beneficial (stacking pillows up and sleeping on an angle sometimes helps) but my room is too small to fit one. I’ve been on a steady dose of muscle relaxer in combination with ibuprofen (over the counter) in order to ease the pain whatever small amount possible. It’s got me worried about my stomach but I don’t know what else to do to help me get through the “drug holiday”.

Anyways, all in all the appointment didn’t go too well. It was alright but it had it’s downfalls, though, we did cover a bit of ground. Despite the length of time booked for my appointment I still had the feeling that she was trying to rush through everything. I’m not a fan of going to the doctors and right now I feel pretty “doctored out”.

Unwell

I’m in KL staying with my aunty. I won’t write too much about it right now but to say that I’m extremely home sick. Being away from the comforts of home has just reminded me of how unwell I am. Not physically per se but mentally.  There are so many horrid, intense feelings that I’m going through that I just don’t even understand. I feel unhinged. And it has nothing really to do with where I am, and it certainly has nothing to do with my aunty, who I adore. It’s more of a magnification of feelings that I spend my time numbing at home. It’s harder to do that when you’re out of your element, so you end up being forced to sort of deal with them for a bit. Things should start to get better the longer I’m here. At least I hope they will. 

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.

I should seriously be sleeping.

It’s 3:30am right now, our bus leaves for Van at 9:30am and out of the last 48 hours I’ve only slept for about 4. Tossing and turning in bed all night is so frustrating. It’s really hard to properly explain the feeling you get when you’re so tired and exhausted that you can’t fathom staying awake another minute, yet, you lay in bed for hours still unable to fall asleep. I don’t even understand it myself but what I do know is that it’s impossible to function normally. I’m more like a shell of myself, a zombie, empty and blank.

My pain level has been ridiculous since Wednesday – miserably so. To be more specific it’s been the worst in my back, shoulders and ribs. Never properly sleeping makes it way worse too. My headaches haven’t been too bad as far as they go so that’s one relief. Thank goodness too because I don’t know if I could handle it.

I’m really dreading the bus trip. Even with the comfortable recliner chairs on the Shriner’s bus, catered to people in pain, the 8 hour trip will be a rough one unless my pain levels lower. My eye appointment on Monday sounds even more dreadful. We were told to expect to be in the waiting room for up to 3 hours before we’re called in. And, in the past we’ve waited much longer than that. Whoever designed the waiting room chairs was not thinking much about the people who actually have to sit in them. It’s almost comical how unpractical in shape they are, making them highly unpleasant to sit in.

All day today I’ve been having some unsettling symptoms in my right eye (the same eye that the stitch is poking out of). I’m getting a tiny ring around the outer and bottom edge of my vision, almost exactly the same as the one that started about a week before that lens dislocated. I’m trying not to think much of it and to be honest it’s pretty easily done. For some reason I can’t actually worry or feel much in regards to things like that, possibilities. My mind automatically shuts those thoughts out and stores them away which is really helpful in dealing with (or technically not dealing with) some of the things that go on in my life. So, other than a weird kind of unease/bad feeling looming around about it, it’s not bothering me a bit.