Change, hand in hand.

pills

So, I have a doctor appointment set for the 10th to discuss upping my pain medication and how bad the back pain is; both night and day. I’m a bit nervous, I’ve never liked discussing narcotics with doctors. It shouldn’t bother me but the stigma of drug addiction and chronic pain and how often it’s assumed that if you take narcotics you’re a drug addict, have always made me feel more ashamed of not only what medications I need to take for the pain, but the chronic pain itself. That’s one of the reasons I’m being open about this on here, I think it needs to be talked about in order to be better understood.

I think I deserve a certain amount of trust from my doctors by now when it comes to my pain medication and whether or not they can rely on me not to take it for the reasons it’s prescribed. I’ve been on the same low dose of codeine (T3s) for 7 years now and I’ve never once “lost a prescription” or taken them for anything other than pain. And I’m not naive enough to think that addiction could never happen to me, but I am educated and conscious of the facts involved and I take every precaution I can to keep that from happening. And when you’re doomed to a life of chronic pain that’s all you can do really.

They do say that those who really, truly suffer from chronic pain are less likely to abuse there pain medication than others. And, I can understand that; the best explanation I can give for my reasoning being that when you’re in a lot of pain the only think you can even begin to think of wanting from your medication is for the pain to lessen. You aren’t thinking of or craving a “high” because being in less pain is the best possible feeling you can imagine at that particular moment. So you take your medication for the reason your supposed to because that’s all you really want; just some pain relief. 

I’m still really bummed at the prospect of upping my medication at all. But, the pain is getting worse and I’ve still got a long way to go in life with this body. I want to have some quality of life while I can, you know? I need to let this particular part of my worries go and learn to accept and move on from it. I do feel really lucky that I live in a place with access to pain medication in the first place because not everyone does. 

Anyways, babbling aside, what I really wanted to say today was thank you all for your constant kindness and support. All of you mean so much to me! Knowing I can log on here and read so many loving, compassionate, understanding comments is such an incredible comfort. You’re all angels. xx

A thousand thoughts, a hundred questions.

The glass is half empty today and I’m about to vent, so readers beware.

I woke up today with such a heaviness in the pit of my stomach. The pain in my back, piercing and ever constant, was a quick reminder of the body I’d be spending the day in. Yes, it’s one of those days, when the reality of your situation hits you like a ton of bricks and it’s hard to even draw breath. The popping and grinding in my hip quickly reminded me not to move so carelessly, lest I not be able to move at all.

I would’ve crawled right back under the covers and told this day to leave me alone if it weren’t for the unavoidable; I was hurting too much to stay there anymore. When these days come I do my best to pass the time without letting my mind wander too far into the future. That’s where the paralyzing fear of my reality lurks. The most terrifying question of all when it comes to my body and the condition it’s in now: is this the best it’s ever going to be? And the answer is yes, because my disorder is degenerative. My body’s falling apart, not coming together. And this, most unbearable and painful of days, is one of the better, more tolerable ones I’m ever going to have.

How do I swallow that? I can’t, so I set it aside while my mind reads through the overwhelming amount of scenarios in my head; How am I going to live with this pain? Do I take more ibuprofen? What about the damage it’s doing to my stomach? After all I’m only 20, I need it to last me a long time yet. Do I take some more Tylenol? But what about my kidneys…they already deal with so much medication as it is. I already took my pain medication for today, it helped a bit but it’s nearly worn off now and the day is hardly 1/4 through. Do I take it again to make it through the day and then suffer another day for not having enough? I don’t even want to be on pain medication everyday but even when I am I’m barely coping. What happens when my tolerance is too high? What happens with the rebound headaches and other repercussions of pain medication? What happens when I can’t even remember what it feels like to think like myself, because pain and medication have dulled my mind for so long?

These are just some of the questions that play on repeat in my head all day. Every decision I make, every second of pain or sickness. The biggest one being; what’s going to happen to me? But, that’s beyond my control so I try to stay in the now. And right now I’m in too much pain, in too many different places. And so, as much as it breaks my heart and makes me sad, I think it’s time to talk to my doctor about upping my pain medication.

I’m going to talk to the neurologist about a treatment for my spine but that appointment is six long months away. Even then I don’t know if he’s going to know what to do with such a rare problem and complex disorder or if he’s going to put me on another long waiting list for a different specialist.

I never thought that I’d long for the days when my ribs and headaches were the height of my pain problems. Back then I never would’ve believed – not for a second – that was as good as it was ever going to be. It makes me realize the importance of hope and how endless the journey can seem when it’s taken away by words like “incurable” and “degenerative”.

Wilted by Hanna Pritchett

Thanks for tolerating the venting, as always.
Hugs xx

A September day.

Well, I’ve got my cane all spruced up with zebra print. I’m still trying to learn how to use it with ease. So far I find that I’m awkward and irritatingly slow when walking with it. I don’t like getting around so slowly, but I suppose it beats not getting around at all!

If I’m to be unflinchingly honest, the cane scares me. It scares me because it’s another reminder that my body is falling apart. It’s another addition to the list of the ever growing manifestations of this damned disorder. But, let’s not dwell on what we can’t change. At least not too much.

My hip’s actually been surprisingly good since my update post. I’m wondering if it popped back in while I was asleep, and the pain it’s causing now is just from the residual effects of it going out in the first place. It’s supposed to take 2 to 3 months for those types of injuries to fully heal. With a tissue disorder they never really do. I’m constantly in a state of injury and “repair” from one dislocation/subluxation or another.

I’m finally starting to get caught up on my blog reading. It’s surprising just how empty a spot they leave when I haven’t been through them in a while. I could liken it to when you haven’t spoken to a good friend in too long.

I’ve been teetering on the edge of a nasty cold for a few days now but when I woke up this morning I felt dreadful. I don’t usually get colds, or at least they start and then fade away. I think some hot chocolate’s in the cards today.

Lisboa 2011 by Juanma Palacios

Hugs everyone xx

Long due update!

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It’s been quite a while since I’ve had a good chance to blog! Summer’s been busy (probably not in healthy-people standards), but things should be easing up now. That being said I can’t believe how quickly time feels like it’s passing. I will be blogging a bit more about this summer, hopefully soon.

I’ve been having quite a bit of trouble with my hip dislocating and subluxating. It’s becoming a frequent and unpleasant problem now. Right now it’s the worst it’s ever been and I’m feeling a bit lost as to what to do about it. I’ve gotten so used to dealing with these particular problems on my own – I cope with and manage the pain until whatever joint it happens to be goes back into place. With my hip it’s a bit more difficult. The movement required with walking, even with a crutch is painful and when I twist it the wrong way which I unintentionally do it’s agonizing. I could hardly move while I was trying to sleep, and normally I have to switch positions constantly for various pain related issues.

Mom’s off to the store to get me a cane. I’ve been using a crutch for the time being but it’s hard on my shoulder and it doesn’t seem to let me shift the weight in a semi-comfortable way. Maybe a cane will be better. If it is I’m definitely bedazzling it with zebra duct tape. If you’re going to hobble, hobble in style.

Not much of an update, I know. But I’m hoping to pick this up again more regularly now.

Hugs xx

Yay, it’s a new day!

What a difficult last few days!! My right hip has been out of place to some extent for a long time (my hips seem be out a little more often than not), I used to be able to pop it back in regularly but it was getting harder and harder until I couldn’t do it at all. Now it’s been causing me quite a lot of pain, mostly when I get up from sitting, which makes it difficult and painful to walk. So, by yesterday it was bad enough that I had to use a crutch on and off throughout. I’m hoping to get a cane next time I’m out. I need to get into the doctor so we can order an X-ray and make sure that’s what’s really going on. I’ve always had hip problems not only because of my tissue disorder but because my hips are pretty severely rotated and they’ve always been incredibly loose.

I’ve been getting some pretty nasty bouts of nausea starting Saturday night. I took some gravol when it started and went to bed. It seemed fine for most of Sunday aside from a few waves of it, but by 5:00pm it was getting really bad again and with the heat in the house (31°c) and my splitting headache I was too sick to stay awake anymore. By 8:30pm I started throwing up (despite only eating a banana all day!) and for the next few hours even the slightest movement would make me vomit, which in turn would spin my throbbing headache out of control – which I couldn’t take meds for because of my stomach. Finally I fell asleep around 4 am or so. 

I started waking up around 7:30, exhausted, because my back, hips, knees and feet were really hurting (nerves I think, from my back), and by 9ish it was bad enough that I had to get up. And holy heat wave! Mom and I had to spend the latter part of today at my grandparent’s in their basement. Our little trailer was at 33°c by the time we left and rising. When you already feel yucky that much heat is no friend. I’ve been taking ginger pills every four hours to hopefully help keep any more nausea at bay –  so far so good. I’ve been too afraid to eat much of anything but I’ve been able to catch up on my water, which I couldn’t do last night.

I’m so glad this day is over! I think I’ll sleep well tonight. Hopefully tomorrow isn’t so hot!! I seem to be very intolerant to heat this year (not that it’s ever really quite this hot here). I’m hoping tomorrow I’ll be able to catch up on some of my blog reading and posts. I miss my blogger friends!

Finger ring splints

I’ve been having some problems with my fingers the past few months, particularly the middle and index fingers. They hurt quite a bit at the mid knuckles and have been hindering my ability to draw and type. They’ve also been popping a lot.

I keep coming across these finger ring splints on the internet, usually by other people with connective tissue disorders talking about them. There are various benefits of wearing them, depending on your particular problem and the type of splint you get. My fingers tend to hyper-extend when I try to straighten them or put pressure on them (the middle and index are the worst). The type of splint I wanted to try is called the swan neck splint and it prevents the fingers from bending backwards when I try to straighten them.    

The splints sound awesome, but they are fairly expensive (anywhere from 30$-80$ for each finger, plus shipping, depending who you order from) and it can take weeks after ordering them before you get them. So, instead of paying for something I wasn’t sure would even work I decided to make my own (out of key rings) and voila!

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I was able to get them to fit comfortably and do their job without paying a dime. I’ve been wearing them for days now and they’re working well.

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The above picture is my finger without the splint. You can see how it hyper-extends backwards when I straighten it. It bends even farther if any pressure is added.

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You can see in this picture that it prevents my fingers from hyper-extending at all in the middle joint. I still have pain in my fingers but I wasn’t expecting it to go away with the splints. I just hope that they’ll help prevent some future wear and tear.

There are a few different places that you can order the splints from, they vary in price but like I said, they are fairly expensive. I’ll probably invest in some in the future but for now the homemade ones will do just fine.

Life can be cruel.

Sometimes life can be so unbearably unfair. I look at the people around me – be it family members or cyber friends – and I see so much pain and illness. It breaks my heart to see so many incredible people who’s lives have been forever altered so drastically by things like MS, Fibromyalgia, Parkinson’s, strokes, cancer, and tissue disorders. How can there be such a high rate of chronic pain and illness? How can so many things go so terribly wrong with the human body? I so desperately wish that I had a magic wand that I could wave and make everyone’s pain go away. I wish they could have their normal lives back and be able to experience what it feels like to live without pain for a day again. It’s such a sickening feeling; to watch the people that you care about suffering and not be able to take it away. And, it makes me sad to know that’s the same terrible, helpless feeling that my mom gets not being able to take my pain away.

I would do anything to give my mom her life back. I’ve dreamt for years of a day when she would wake up in the morning happy, rested and pain-free. And now, worse than that, she has to cope with having a daughter who is physically falling apart and unable to care for herself the way a healthy 19 year old can. It’s a lot to handle, more than anyone should have to. There’s so much uncertainty and with it comes a constant uneasiness – a fear of what might happen next. I know one thing’s for sure; we’re a team and without her I can’t imagine how I’d cope with this life.

To all those in my life – cyber or otherwise – who’re in pain; you are always in my thoughts. I’m sorry you’ve been dealt such a difficult hand in life and I wish that I could make it all better. I’ve learnt so much about life and perseverance from all of you. You’ve all not only taught me more about myself and how to better handle my own situation but you’ve also opened my eyes to the many faces behind pain. You teach me things that even first hand experience in the matter can’t. I hope you know that I’m here for you. I’m here with you.

Thank you and much love.

In Kindness There Is Strength by Βethan

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

It’s Thursday already?

Finally, an update! How is it that the days seem to drag on forever yet at the same time they’re going by so ridiculously fast? I had meant to do an update last week!

I’ve been feeling rather introspective, perhaps it’s a day for it because my good friend Benjamin seems to be feeling the same way! Actually, I’m rather moody as of late. I fear that I’m slipping back into one of my major depressive episodes. The holiday season seems to only be making it worse. I think that I’m still harboring sadness and anxiety over how last Christmas turned out. It seems like I have a hard time letting emotional pain go. The more sadness that creeps it’s way in the more I find some painful memories stealing their way into my thoughts along with it. I wish that I could be numb to both the physical and emotional sometimes, that I could forget some things that have happened. Life would be so much easier that way.

Knowing that I might be falling back into a major depression but not being able to stop it is terrifying. And, I wish that it wasn’t happening around Christmas, I don’t want to ruin the joy of it for the people that I love. It’s times like these that I wish I could be medicated for the depression. Even with the awful side effects and conflict over putting toxins into my body, I just want to get better. But, thanks to the urinary retention side effect that’s not even an option anymore.

Painwise, I could be doing better. My hip subluxated about a week ago. It went back into place fairly quickly but it’s been really sore ever since. My tailbone is also dislocated again. I’ve been looking into the tailbone removal surgery, but it sounds like it’s one of those gambling decisions where you might just end up worse off than you already were. And, with my tissue disorder, I think it’s best not to mess around with surgery unless it’s straightforward and 100% necessary. Besides, I’ve been dealing with the tailbone dislocations for as long as I can remember. They’re getting more frequent and they’re painful but I can manage them. 

I found out today that I’ve been approved for an appointment with one of the best orthopedic specialists in our province. It’ll likely be in mid March at the Children’s Hospital. We’re going to line it up so that it coincides with my echo there for the Marfan/Loeys-Dietz clinical study my pediatric cardiologist is doing as well as my appointment with my new “adult” cardiologist. Two echos in a matter of days isn’t ideal, they’re very painful because of my rib problems, not to mention that doing two of the exact same tests seems a little pointless but we have to attend our appointment with my new cardiologist within a year of the referral or the process has to be redone. I’m nervous about meet two new doctors. I’m always afraid that they’re going to be jerks, but I’m hoping because one is a highly recommended specialist and the other works with children for a living that it’ll turn out okay.

Winter by Dieter Thau

I hope that all of you are doing well tonight and that you’re enjoying your holiday season!

The ILC Foundation

Hi guys. I wanted to write a bit about an amazing foundation that was brought to my attention when I was at the Canadian Pain Summit this past April. They are called the ILC foundation and are dedicated to improving the lives of young people (up to age 29) suffering from chronic pain. They offer a wide variety of resources including one on one support, a peer support network (including live chats and webinars), an online library full of resources for specific age groups and ailments, along with a wealth of information and events to attend. There’s so much more on the site and I highly recommend anyone with chronic pain or those who have a loved one with it to check it out. You’ll be glad that you did!

I feel so lucky to be living in a time and place when resources and support like this is available to help me through my chronic pain journey. One of the hardest parts of chronic pain, especially when it starts at a young age, is the isolation. You begin to feel so misunderstood by those around you and alienated from other people who do understand what you’re going through. That’s why programs and foundations like this are so invaluable. They give us back a connection to the world and a feeling of support and access. The foundation’s creators/staff are amazingly kind, understanding and helpful as well which puts you at ease and makes you feel more comfortable contacting them with your needs and/or questions.

The ILC is also involved in heading Canada’s first ever “21-Day+ Pediatric Chronic Pain Rehabilitation and Wellness Program” alongside experts in pediatric chronic pain. I watched a video on their Facebook page the other day of different kids, teenagers and young adults talking about their lives with chronic pain and how things have changed since it started and the importance of advocates and support. The video was amazingly well done and I was in awe of how precisely each of their stories echoed my own. I suggest watching it for yourselves, it’s very educational and heartfelt (you can find it by liking the ILC Foundation’s Facebook page, the link can be found below). 

Click here to go to the ILC Foundation’s Facebook page and here to follow them on LinkedIn. I’ll also be putting a button link on the side of my blog for quick easy access to their website. I’m grateful to the ILC Foundation for the things that they’ve done for me so far and I know that they’ll continue to be an important and immeasurably valuable resource to me in the future. I’m so thankful to the dedicated and caring members who do so much for us young people in pain.