Tag Archives: Video Blog

Ketamine Infusions: From Bad Reaction to Successful Pain Relief

Dear Audy,

Thank you so much for all of the kind messages of support that I have received since posting Ketamine Infusion for CRPS: My Single Day Experience! It is so very wonderful to be feeling better and actually have good news to share with you.

I’m still struggling a bit with concentration (you guys, I haven’t even been checking on my Sims regularly). I get a few hours of decent thought in here and there, however I’m mostly still focused on increasing my physical activity without injuring myself or causing a CRPS flare.

I’ve finally gotten my kitchen mojo back and I’m back to enjoying yummy baked things that don’t make me feel sick and pots of healthy Winter stews. Tonight’s dinner is Orange and Fennel Chicken and is already in the slow cooker, so I’m free to use up all remaining brain power on whatever I like!

Thanks to all of the wonderful people who have shared my last post, I’ve been lucky enough to come across social media comments from a variety of different readers. Several have been kind enough to share their own experiences with ketamine infusions for chronic pain. Sadly, many of these have been tales of horror and hallucination, with memories of distress and despair.

The strangest thing about reading these stories is that, even though I am now lucky enough to be responding well to ketamine, I was once the patient who had the terrible infusion and then lost all hope. I think this might be a rare position. Ketamine infusions can be difficult to access and dangerous. A failed infusion can mean the end of the line for this method of pain management, it certainly meant that for me for almost five years.

Nothing about this post should be interpreted as medical advice. I am not a doctor. I have no way of knowing whether ketamine infusions can help you, or your loved ones. I am simply sharing my story because it’s true and it happened to me and I feel like awareness grows bigger with every new and different patient story that’s out there.

In 2009, I went into hospital for a 10 day ketamine infusion. It was my first time trying this medication and things did not go very well. I don’t need to explain this story to you, though, because I’ve brought in 2009 Caf to do it for me…



Yeah…it was awful. It’s not easy to watch that video now, to see myself so disappointed and lost. I remember that feeling of hopelessness with every cell in my body.

Side notes:

1. I never did get that medical history from that particular doctor. I never had the strength to chase it up. Sometimes, I wonder if dodgy doctors who give up on complicated patients rely on this. Sick people just don’t always make the best follow-up-erers, they’re too busy being sick.

2. I still have pain that is specifically from that blood test that I mention right before my mitten becomes a puppet (of course it does, the me in me runs deep). It still flares as though the needle was puncturing the skin yesterday. So weird, body. So, so weird.

And so, you see, I was once this person who had a terrible reaction to ketamine. I heard stories from people who had had positive reactions to their ketamine infusions and were gaining back huge pieces of their lives and, oh, was I jealous! I couldn’t understand why I wasn’t one of the lucky ones and part of me resented anybody who was, despite my efforts to quell these feelings. Understanding that envy is a useless emotion to indulge, those feelings of jealousy eventually just lumped themselves on top of all the other reasons that I found to feel depressed and hopeless.

I was in horrible pain, 24/7. My CRPS kept spreading even though spread was supposed to be a “rare occurrence”. None of the pain medications helped. I finally got to try the holy grail of CRPS treatments and I ended up worse. Everyone with CRPS seemed to be finding something that worked for them except for me (not true, but it wasn’t a rational mind that was generating this thought stream). My future felt destined to be bleak and I couldn’t think of any way to make it better.

Now, I am this person who has been receiving regular ketamine infusions that have been helping me to regain a lot of function in my daily life and have helped me to learn how to feel hope again. It’s weird, I don’t have any explanations for why me, or why now, or how the same drug could have such different effects. I don’t know any of the whys and hows, I’m just enjoying this upward swing in my life’s journey and hoping that it continues.

I don’t know if any other patients with CRPS have experienced this reaction to ketamine, or something like it. Please leave a comment if you have, I’d love to hear from you!

I don’t know if the fact that this drug didn’t help me and then did help me when administered differently can be of use to other people with CRPS. I’d suggest talking to your specialist if your story is similar to mine and you are interested in pursuing a new try at an old treatment. I have to doubt that I am the only person to have reacted this way to multiple infusions, or that would react this way if given multiple infusions.

I might be special, I might not. Nobody can answer that without some extensive and expensive clinical trials. I am just a storyteller, so take from my experience what you will. I’ll keep sharing my story as it happens and maybe together, we can learn some stuff.

This is my story, it’s true and it happened to me.

Love & Reflection,
Caf

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  • Health Activist Award Nominations & Half Way Through My Blogging Challenge Celebrations

    Dear Audy,

    Today’s NHBPM challenge is to nominate bloggers for WEGO’s Health Activist 2012 Awards. I’m really glad this was included in the prompts, because blogging every day is exhausting and I’m not sure I would have remembered to submit nominations if not explicitly “given” the time.

    Want to nominate your favourite health bloggers?! CLICK HERE
    (opens in a new tab, I’ll still be here when you’re done)


    There are too many brilliant bloggers who live with chronic pain and illness for me to list them all here. I’m a bit paranoid about leaving somebody out. I can’t seem to manage to play favourites; ranking things often makes me feel a bit silly. I even struggle to rate music in my personal iTunes collection, it could be said that my star system is not very systematic at all.

    Sometimes, I just like to like stuff without that being relative to how much I like other stuff.
    How do you quantify amount of liking anyway?


    Here is a list of the whys I used to nominate the blogs that I managed to choose:

  • Honesty. Truth really is the most moving thing that a blogger can offer.
  • Skill. Most people can write, however writing well is a special skill. I appreciate few things as much as I appreciate an image that is perfectly constructed out of words.
  • Determination. It’s the focused bloggers that reach the furthest and the ones that push on through hard times that inspire me to do the same.
  • Being engaging. I love blogs that make me want to read properly and not just skim.
  • Check out the NHBPM Facebook event where you can find an awesome (what’s the collective noun for bloggers?) Whatever it is, there’s an amazing one of those on the other end of this link.

    Day 15 also marks the half way point for this 30 posts in 30 days challenge. Here’s a quick video update about how I’ve been coping with blogging every day and still managing my CRPS.



    Do you have trouble playing favourites, Audy? What are some of the blogs that help you to cope with chronic pain or illness? Don’t just tell me, go nominate them!


    Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.

    Love & A Half-way Dance,
    Caf

    WEGO, CRPS Awareness Month, #NHBPM


    This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.

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  • Video: Implementing Pain Management Knowledge & Making Strides!

    Dear Audy,

    Today is for a new talkie! The activities that fill my days at the moment might not be particularly exciting, however the steps I am taking toward coping more effectively with my chronic pain certainly are. I have been working super hard and whilst that means less socialising and more time alone with my chores, I am actually enjoying myself. Achievement is a wonderful feeling.



    The more I work at it, the more that I am able to keep improving the structure of my days and weeks. I still have flare ups and pain prices to pay, so I need to be managing around those and I am getting better at being comfortable with their unpredictability. For example, this morning I have woken up with high levels of pain in all of my joints. This happens regularly, it’s not a surprise, however in a few minutes I will go and get in the bath and soak some of the owies out. That motivation to get onto some sort of pain management technique as soon as possible and not delay through fear or laziness is definitely something to be proud of. Especially when one knows just how difficult it is to muster the strength to actively work against the dictator that is chronic pain.

    It feels weird to write that I’m doing so well when right now, in this moment of typing, I am burning like crazy. I’m not upset by it, even though the sensation is running rampant. It feels weird, but like weird progress and that’s something that I can be happy about.

    Love & Double Rainbows,
    Caf

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  • Video: Summer Flares & Getting Past Them

    Dear Audy,

    It’s talkie time! In this video I am chatting about how Summer effects my chronic pain, what helps make it better and what doesn’t, and also what happens now that it’s Autumn…

    Enjoy!



    Do you have chronic pain? What weather conditions are hardest for you to bear?

    Love & Falling Leaves,
    Caf

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  • My First Talkie For 2011

    Dear Audy,

    I recorded this a couple of days ago. In the video I am talking about coming off Lyrica and the kinds of things that have been helping me to cope in recent months.

    Enjoy!



    A huge thank you to JC for leaving me a comment on my last post, letting me know that the Lissie cover that I mentioned in my review was Maxine Nightingale’s “Right Back Where We Started From”. You are wonderful, Audy, I’d sincerely like to thank everyone who reads, watches, comments. You help to keep me motivated and inspired every day.

    Love & Chats
    Caf

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  • Behind The Scenes Of A Fun Night Out

    Dear Audy,

    Hello! I am feeling well, hurrah!! Well, well in the sense that my silly chronic pain hasn’t gone anywhere, but I have gotten to a better level of coping. October and November brought a lot of minor injuries that caused major flare ups. I am happy to say that I think I’ve recovered from the worst of it and can get back to finally moving forward and feeling human again.

    Talkie time! Just a few words on the thrill of leaving my house for the purpose of fun and the challenges that come along with doing so.




    Having fun with my lovely friend Jen.


    I didn’t know this until I read Carly’s post this morning, but today is International Day for People With A Disability. I am one of those! I am glad that today is one where I feel like I can celebrate being in control of my pain, rather than feeling smothered by it. Sure, I’m extra worn out from doing things this week, but I feel like I know what to do to recover effectively and that makes feeling the pain a bit easier. Things are easier when they aren’t scary and unknown. Expected pain is more tolerable than the kind that comes out of nowhere, like a wrecking ball.

    The second piece of exciting news is that Ramp Up, ABC’s new disabilities website launched today. I have spent most of this morning reading through the wonderful articles that are already up, some by people that I’m lucky enough to know and some by people whose writing makes me want to know them better. If you feel like reading some very insightful and enlightening articles, head on over there! I’m excited to say that I will have some contributions published over the coming weeks, I’ll let you know when they are up for you to read, hurrah!

    Now I shall sit back and relax happily, knowing that it’s necessary rest and knowing that if I treat my body well, it will let me go out and have some more fun tomorrow!

    Love & A Quiet Day,
    Caf

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  • LOVE BEATS HATE

    Dear Audy,

    Today I am taking part in a blogging event that… actually happened yesterday. Oh wells, I can do things when I can do them, it’s this whole thing where I listen to my body and behave in ways that will assist healing and help me feel better, even when that means avoiding what I actually want to do. In these days that my hands have been mental, all I have wanted to do is write… of course. I am going to get hooked up with some talky/typey software so that I am not forced to stop writing at times like these, when the seasons change and my nervous system can’t keep up, so it throws tantrums.

    I was invited to join in with Love Beats Hate by the lovely Jeanne, from Chronic Healing. The idea behind this initiative is to focus on all the good that is made possible by social media. As a disabled person, the internet has helped me a lot. I just don’t know what I’d do without you, Audy.

    Sometimes, I warble a little to warm my voice up before I start talking to the camera. Today my mindless warbling contained a rather excellent lesson. Let’s not sound like we have a stuffed nose. Giggle, I am always amused when subconscious me sings, quite literally, what she’s thinking. She has a good point. It can be unavoidable, but never sounds good to have stuffy nose voice, especially not when you’re planning on recording what you say.

    (Side note: That’s enough already, airborne allergens. Also, I have no idea why I’m referring to myself in plural. Let us? Me and Subconscious Me? Am I going Gollum?)



    You can check out the Linky page here for other posts by participants of Love Beats Hate to see what other bloggers have to say.

    Have a wonderful day! Go and be nice to someone, just for the sake of it. Giving warm fuzzies is getting warm fuzzies, after all, it doesn’t matter if the person in question reciprocates. Just focus on how good it feels to be genuinely nice, it feels so much better than being rude or cynical or judgemental or mean. The nicer you are, the better you’ll feel… and couldn’t we all stand to feel a little bit better? I think so.

    Having trouble with the CyberBlues? Check out this past post where I ramble on about coping online: Interacting Online: The Joys, The Struggles & Surviving Unharmed.

    Love & Extra Love,
    Caf

    P.S. Please feel free to share your own stories of internet warm fuzzies in the comments, I’d love to hear them!

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  • Pretty, Little, Mood Lifting Flowers

    Dear Audy,

    I am bumbling along in my usual fashion, just trying to deal, trying to cope. When there is a lot of negative stuff going on, it is important to nurture the mental rewards that are received when we choose to focus on the positives. The old saying would have us remember to smell the roses. I haven’t been sniffing, but I have been admiring my cactus flowers, lately.

    Please excuse my shaky hands…they do that.



    Lots of Feldenkrais, lots of rest and lots of focus is the way that I am getting through my days. Anti-inflammatory pills are helping my hip enormously and my neck and shoulders are finally settling down. Yay! Things are turning around, Audy. My biggest problem right now is very sore hands. In their defence, I am forcing them to do a lot more typing than usual, working on some stories and articles and organising life in general.

    It is most definitely time to give them some rest!

    Love & Moving Forward Again,
    Caf

    P.S. New, organised blog layout! I felt like a change & I’m digging the multiple RSS feeds for different post categories up the top there. Yay!

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