Change, hand in hand.


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

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

Hello 2013

I just realized I haven’t posted anything since before the new year!

I hope you’re all well and that your holiday season was filled with love and joy. I haven’t been writing much at all, partly because I hurt my back and it was getting to the point where I could barely make it out of bed without screaming out in pain. It’s improved enormously in the last two days though, so I’m not complaining! In fact I’m quite happy about it!

Mentally I’m in a reasonably peaceful place right now. I feel hopeful that this year will be better than the last one. I have a list of things that I’d like to accomplish by the end of 2013 that I’ll post as soon as I’m finished. Some of my goals may seem trivial but sometimes even small achievements seem major when just waking up can be a challenge.

On a more somber note: our Marfamily (Marfan-family) as we’ve fondly come to know it, has recently taken a very painful and heartbreaking blow. One of our beautiful, precious Marfan babies; Teddy, has passed away. He was not even a year old yet and he had already endured two heart surgeries. If you have prayers to spare I ask that you direct them toward his family, whose pain I cannot even begin to imagine. If only words and prayers could ease such a pain for them. My heart, love and thoughts are with them at this time. And Teddy, you remind me to be brave and to cherish my moments on this Earth.

Winter Sky by Anna Fischer

A miracle for Vic.

I know that I haven’t written a lot lately, and I will do an update soon about how things are going. But, I’d like to talk about an internet friend of mine who is going through a lot right now; Tersia. Tersia is the mom of Vic, who has a genetic connective tissue disorder called Osteogenesis Imperfecta (read this blog post from Tersia for more info on some of what Vic’s been through). I’ve grown very fond of her and what I know of her family. I feel deeply connected to her somehow and she has given me so much support during times when I’ve truly and desperately needed it. I wish that I could meet her and tell her what a difference she’s made in my life face to face.

It amazes me that despite everything she’s gone through and is going through that she still takes the time to read and comment on my blog, offering her support. Vic has been through more surgeries and more pain in her lifetime than I ever even thought possible. So much so that I can’t even wrap my head around how strong she has to be to have survived it all. They both truly inspire me.

Vic’s health is declining and they wonder whether or not she will bounce back this time. My heart breaks for them and I wish that there was something that I could do to make everything better. I read the posts on Tersia’s blog (all beautifully written) and can feel the unconditional love and devotion that she has for her daughter and how lucky Vic is to have a mom like that by her side through all she’s been through. You can almost feel Vic’s pain through her mom’s words and it’s a powerful thing.  

No one deserves to have to suffer so much, not Vic and not her family either. It truly makes me wonder, what is the purpose? What is this test and why did it have to be Vic? And since it is them and they’ve been through so much, please, give them their miracle. Let her get better again, and let her not be in so much pain.

Miracles Do Happen by Mark Menzies

Thank you Tersia, for everything. You have my thoughts, my prayers and my support whenever you may need it. I recommend anyone who reads this to check out her blog, it is wonderful and honest.

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

Your words, my medicine: What the online community means to me.

It’s impossible to adequately explain to people what the online community has been for me. My face to face network of support got so small when I actually needed it, leaving me feeling so much more alone then I ever had to begin with. And not to say that I didn’t play my part in that; as the pain worsened so did the depression that followed and I began to isolate myself from a world that I felt no longer understood me and that I could no longer properly be a part of. I pulled away. Now I don’t even think that I know how to act like a teenager; to let loose and just have fun with my peers. I can’t pretend that I’m carefree – not when there’s medications to be taken, bone shattering pain all over my body and the lingering question of if I needed to go to the hospital how would I get there safely? – clearly I’m not carefree, there’s just too much on my plate for that. Pain can take all of the fun out of things and it does.

Online I’ve found understanding and support. I’ve been able to talk to other people my age with my disorder that I’d never have access to otherwise. I’ve been able to learn from and lean on people from every corner of the world who also spend their days in pain or who care for someone who does. I’ve been on the receiving end of such genuine care and kindness and in turn have become so invested in the lives of those that I converse with. When they hurt, I hurt for them and vice verse, and it’s not a bad thing. It’s because I can relate on such a deep level to them and everything that they tell me that it’s impossible not to become involved where their lives are concerned. Not to mention what the kindness of those same people has meant to me. It lifts me up even when I don’t think that such a thing is possible. 

Sometimes the deep connection that I share with these incredible people can have painful repercussions – for instance when someone loses their battle with their illness. I mourn for them as I would for any other friend because it cuts just as deeply. When it is my specific disorder that takes a life it’s a painful, sobering blow that hits extremely close to home. It’s during these times that I’m reminded of the reality that is Marfan Syndrome but also that I am lucky to still be here. I do my best to honor and remember them: I mark their name on the mural/sketchbook that is my wall and am sure to be ever reminded and thankful that I’m still here. Sometimes deep depression and extreme pain cloud that thankfulness but for the most part it serves it’s purpose. 

My online community or “family” are a constant reminder of the sheer strength and power of words. I very often start my day by checking the comments on my blog because the kindness does so much for lifting my spirits and readying me to fight it out another day. I’m so grateful for all of you and to have that support system.