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

I will hold on hope.

I realize something that maybe I’ve been avoiding for a while – my positive outlook on life has changed dramatically in the past few months, it’s been swallowed up by depression and hopelessness. I’ve ceased to participate in my life. When did that happen? I think it’s been a slow progression. I don’t have good days and bad days really, there are the highs and lows but mostly it’s just emptiness, eternal boredom, nothingness, accompanied by never ending physical pain.

What a waste of a life. That’s not what I want my existence to amount to – having my spirit broken by my worst enemy; pain. How did I let myself become this shell of a person? I’ve stopped being excited about things, stopped setting goals and having hopes. When I get an email from someone in pain or with an illness, asking me how I stay positive, I feel like a fraud – how can I give advice to other people that I can’t seem to follow on my own? I think I’ve started using my illness as an excuse, and it is, for a lot of things, but it doesn’t mean that I can’t try, and it doesn’t mean that there’s no room for anything else, anything good, in my life too.

I’m afraid to fail, and, I’m afraid of discovering just what kinds of things my body prevents me from doing. But that’s what I’ve realized – my fears keep me from doing much more than my body or pain ever would. That’s not okay. So, I’m going to start correcting that little voice in my head that tells me that I can’t do things and that I shouldn’t even bother trying as soon as I hear it and replace it with one that tells me it’ll be worth it to try, no matter the outcome. My own form of cognitive behavioral therapy. It’s been so long since I’ve truly worked hard at something and felt the pride of achieving it. I need to remind myself what that feels like. 

I wanted this blog to be as honest as possible, but I also wanted it to be somewhat positive, maybe even inspiring. So, time to get at it!

Hope By Jan Tik

I will hold on hope, and I won’t let you choke,
On the noose around your neck.
I’ll find strength in pain,
And I will change my ways.
I’ll know my name as it’s called again.

Mumford and Sons – The Cave

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!

Thumbs down to Time Magazine

I don’t know if any of you have heard (or read) about Time Magazine’s new article focusing on some of the changes to the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders). I hadn’t planned on writing about it but I just can’t keep my feelings to myself on this one.

My issue isn’t so much with the article itself but with the title of it, which is; “Redefining Crazy: Changes to the Bible of Psychiatric Disorders”. First of all: redefining crazy? Really Time Magazine, are you serious? That is an unbelievably irresponsible and insulting title. Not only are you contributing to the already often debilitating stigma of mental health and psychiatric issues, you’re also insulting the millions of people who deal and struggle with those issues on a daily basis. This kind of damaging thinking is exactly why it took me so long to seek out help for my own issues in the first place and also a central reason that I have such a hard time writing about said issues and being honest about the areas I struggle with; fear of judgement, fear of being perceived as crazy, when I know that I’m not.

Title screenshot

To make matters even worse and more infuriating, one of the first things discussed in the article is the changes made to the areas of the DSM-5 dealing with Autism. So essentially Time would have you believe that Autism = crazy? Wow. Also in the line of fire are those who suffer from eating disorders, depression and anxiety.

My first reaction to the article’s title was sadness and disappointment. It reminded me of the ignorance that is still so widespread when it comes to mental health problems and how easily encountered unfair judgement is, passed down by those who have absolutely no idea what it is to live with any of these things.

Why choose to slap such an awful title on an otherwise alright article? What was the point? I don’t understand why those with the power to reach and influence the thinking of so many readers would use that power so irresponsibly. Are they purposefully looking for controversy in order to increase their traffic? If so, that’s a pretty pathetic and deplorable trade off.

Venom & Whiskey

I’d tell you that your crazy but, well, who am I to know?
You’ve been running ’round in places that the manics only go.
By 1:00am you’re wasted and by eight you’ve had your fun.
I wonder if it’s normal or if you’re the only one.

You’re talking to the devil while he plays you for a fool,
I wonder if you fake it, or if you really are this cruel.
Your eyes are getting heavy but you’re resigned to stay awake,
You test and test my limits, prodding how much can you take?

Just when I think you’re hopeless, a body without soul,
Your eyes come back to haunt me, while your lies, they take their toll.
Maybe I’ll pick up the bottle, right where you last left it,
And drink away my thoughts of you until I’ve forgotten every bit.

I’m learning all your rules now and I know just what they mean,
I’ll save my doubts for later, and hope that you come clean.
You’re in the other room now and you’re screaming your objection,
Angry that I have the venom to accuse you of deception.

The echoes in the hall, still linger the next morning.
You took your coat and headed out, but left me with a warning.
Square one again so I decide to sleep the fear away.
Knowing that I’ve trespassed, and that I’m going to pay.

©

Dear 13 year old me

I was looking through one of my old journals the other day and stumbled upon this letter that I wrote when I was 16, addressed to my 13 year old self.

Dear 13 year old me:

I know that you’re scared right now. I know that you’re going through a lot and that you don’t know what’s happening or why you’re in so much pain. You will know one day, I promise. It’s going to take some time but it will happen.

I know that the people you love are confused too. Some of them may not understand what you’re going through very much. I know that this might make you question how much they love you, and it might make you want to push them away to keep from getting hurt. Try not to. Try talking to them and telling them what you’re feeling and that what they say can hurt just as much as the physical pain sometimes. They’re going to make mistakes and say the wrong things, but try to remember that this is all new to them too and that they really do love you.

Your pain is real. Never start to doubt that just because some ignorant, uninterested doctor couldn’t be bothered to give you a better explanation. They’re wrong, and one day you’ll be able to prove it. You’re not crazy, no matter how much you’re beginning to feel like you are. The way they’re treating you is wrong and I’m so sorry that they aren’t trying to help you. 

I know that you’re tired, physically and emotionally. I know that you feel like giving up, and that sometimes you think that you’d be better off dead, but things are going to get better. They might have to get worse first, if you can even imagine that, but there will be improvements in the future. There’ll be more downfalls too but you’ll get through it all, you just have to be strong. 

Don’t give up on your education. I know that you’re bitter because this isn’t the way that you wanted to start your high school experience, but, giving up on your school work will not make you feel better and you’ll only regret it down the line. I know that it’s harder at home, but you’re smart and I know that you can do it.

I’m sorry, but you’re not going to play basketball or volleyball anymore. I promise you though that one day it won’t hurt so much to let those things go. With time it will cross your mind less and less. You need to let go of some of your hopes and dreams. It’s not fair, I know, but there will be new dreams and goals, you just need to keep an open mind.

Most of your friends are going to start dropping out of your life. Some are already starting to, and sadly more will eventually follow. I know you feel like it’s because there’s something wrong with you, or that you’re not good enough anymore but I promise you that it’s not personal. They don’t understand why you aren’t going out with them anymore or why you seem so boring and down when you do. Some of them probably wonder if you’re faking it or trying to get attention. They don’t know how hard it is for you to keep up now and do the things that you used to. They’re young and they want to live their lives that way. It might be hard to face, but there are just some things that your body isn’t going to be able to handle anymore.

Never forget to thank mom for being there for you. I know that right now she’s the only one who truly believes you and is fighting for you. She’ll never stop, ever. The two of you are going to have to help each other through a lot of pain and hard times. You’re going to have to be there for each other through everything. I don’t have to tell you how lucky you are to have her, I know that you already know. 

Finally, try to appreciate the things that you still have. Try to hold on to those things instead of the pain you’re feeling because one day they will be the last memories you have of a life without constant pain. Remember the sense of purpose you had in life before this new pain started and hold onto that. I still have faith that one day we’re going to need it.

I found the letter hard to read sometimes. It brought up a lot of old feelings and made me wish that I could hug that 13 year old girl and tell her to keep her chin up. I wish that I had some of the knowledge and connections back then that I do now. It would’ve made life a whole lot easier.

Smiley faces.

A world full of pain is a lonely place. That is simply the truth. That being said, I’m again reminded of the hearts that go with me on my journey, even to the loneliest of places. There is love and compassion to give me strength when I feel done fighting to live a life that I find no pleasure in anymore. They remind me that; though I’m alone in my pain, I am not alone in life. <3 

Thanks SN, LG, and yours’ for the flowers. They meant more than I can say. The smiley face mug was perfect! xox

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.

A quick update on pain and my doctor appointment.

It’s been a little while since my last post and I thought that I should update. Thank you all so much for the kind words and support. I know that I haven’t responded to any of the comments and/or emails but know that I have read them all multiple times and they mean so much to me. The love and compassion gives me strength when I need it the most.

I got in to see the doctor the same day that I last wrote. The appointment was brief because she was fitting me in but it was enough time for her to get the gist of just how badly I’m doing pain-wise and how painful the rib subluxation is. Actually, I think she was a bit startled by the state that I was in. I hadn’t slept yet so I was in zombie mode, I couldn’t put my shoes on without my mom’s help and I was on the verge of tears whenever I tried to explain how hard things have been lately. She seemed to grasp my situation and desperation fairly quickly. She ended up giving me a prescription for Hydromorph Contin which is just time release Dilaudid (the pain killer that I used to take every once in a while when my pain level was especially high), to take twice a day. I’m on a much higher dose of that then I want to be and it’s been stressing me out but even with that I’m still having a really hard time with the pain. If I hadn’t been side tracked I would’ve insisted on a different medication because I can’t take this one without taking gravol first. If I don’t then the nausea gets bad enough that I just end up throwing the medication back up. It seems wrong to put so many pills in my body everyday and the gravol in combination with my beta blocker and pain medication make me unbearably tired. That would be fine – beneficial even – except that it hurts my back to lay down for very long at a time.

I’ve been in a bit of a better mood than before. I enjoyed my Thanksgiving even though it was a little overwhelming and I was too sick to eat much. I got to meet my cousin’s 5 week old baby girl for the first time (I love babies) and see some family that I haven’t seen for a long time. I was thinking about what I was thankful for on Thanksgiving day and the first thing that came to my mind was my mom, of course. She’s been so amazing and supportive the past couple of weeks. She’s the only thing that’s kept me holding on and I know that I’m unbelievably lucky to have her. I’m also very thankful to have the opportunity to write out everything that I feel – good and bad – here on my blog and for all of you and your kind words.

Anyways, I’m still trucking along as best as I can. I haven’t slept yet so I hope to write a little more later today once I have.

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.