About

About the Blog

Hey everyone! My blog is largely about life with a chronic illness and chronic pain, from a 21 year old’s perspective. Like so many other chronic illness related blogs I started this site with the intent of keeping family and friends in the loop as far as my health issues go and as a place that I could come and vent when I needed. Things grew from there and now a few years later, here we are!

Tying into the topics above, I’ll also be writing a lot about Marfan Syndrome and connective tissue disorders, and the day to day of living with them. The creative me also insisted that I post photographs that I’ve taken and drawings that I’ve done as well as – on occasion – some of my less embarrassing poetry.

If you have something you’d like me to write about or that you’d like to guest post about feel free to email me your idea at katie.robertson@live.ca. I appreciate any suggestions and credit will be given where it is due (unless otherwise requested).

Comments and opinions are welcomed on this blog.

Thank you all so much for your support! It truly means the world to me.

Much love. ♥
– Katie

31 thoughts on “About

  1. Katie,
    I found your blog via your message on another blog but loved your spirit! I clicked FOLLOW as soon as I read the first post! You are a couragous inspiration to us all! Hey, I just wanted to point out that I was surprised to not find more traffic on your blog and realized that you don’t have your link of your site linked to your gravatar… (when someone clicks on your picture to find your address to your blog) your address is not there. Somewhere on my site… I have a link to a post that I re-blogged on gravatars that explains about how to do it! I think that has got to be why not more people have found you! You are worth finding!
    You are in my prayers!
    xoxo
    Diane

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    • Thank you so much for taking the time to find and tell me about that information! I had no idea that my blog wasn’t linked to on gravatar (a little slow on the uptake lol). Which in hind-site is just funny because I’m always annoyed when I try to find a blog that way and it’s not there. I think I’ve got it sorted now though!

      Thank you so much for your support and kind comments, they’re very appreciated! And thanks again for the info! :)
      Hugs xx
      Katie

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  2. Dear Katie,
    I just found your blog. Thank you for sharing your thoughts , journey and knowledge with us. You are a strong generous soul and I admire your determination, I know it’s really not easy to fight every day with all the pain.
    I send you my love, blessing and thoughts, sincerely, from the heart.
    I will follow your blog from now on.
    Ela

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  3. Pingback: The Liebster Award | Musings of a Marfan Mom

  4. Pingback: A beautiful honor | Pain, Pain, Go Away

  5. I just found your site and I wanted to say thank-you for sharing your story. I have Osteogenesis Imperfecta and we just moved to a new State and I am starting all over finding new doctors and sharing my health issues with them. Most of the time I feel like I am untreatable because the doctors have only heard about OI from medical school so they really don’t want me as a patient. Thank you again for sharing your story it means alot to me as I also suffer from chronic pain and it is nice to know I am not alone.

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    • Thank you, I do not mind at all. I was also going to tell you that I included a link to your blog on my “beneficial blogs” page. I hope you don’t mind, I just think your blog is so beautiful.

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  6. Thank you for this blog. I was actually looking for other families with Angelman Syndrome. But we are waiting for a geneticist appointment as there may also be a connective tissue issue within the family. I will stay posted here.

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  7. I understand about the headache thing, certain pain med’s use to trigger migraines, and they do have side effects. I don’t know if you have a pain specialist, I was perscriped Cesemet/Nabilone it is a THC pill. I very very seldom take it but when I have a flare up it is a LIFE SAVER. Perhaps your doctor hasn’t given you a strong enough pain med, as this crack down on narcotics effects ppl in cp as the med’s they will give like percacet, oxycodone the lwr opoids are not effective for severe chronic pain. I am just trying to give you some things I have learned as I know how hard it can be to get proper pain relief. Take care

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    • Yes, proper pain relief can be extremely hard to come by.

      I no longer have a pain specialist but I did attend a pain clinic with a team of 6 doctors for over two years before graduating from it and I keep myself up-to-date on all recent methods and trials for treating pain.

      I don’t respond very much to pain killers, never have. It usually takes very large, unrealistic doses to acquire very minimum pain relief for me. It seems to be biological as my brother and mother also have the same issues with both medications and anesthetics. I’ve also heard of this regarding Marfan Syndrome because the body metabolizes things faster than the average, allowing them no time to work.

      I’m already prescribed one of the most potent pain medications available. I was told to try THC tablets at 14 and again at 17 but found no relief in them either time.

      Thanks for your suggestions.

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  8. Hi Katie I learned of you from my friend Sandy Topper. I won the CPC faces of pain contest: Ontario. Congrat’s on winning and for going to the summit to speaking on behalf of all of us in cp. She had asked if I was going to the summit and would have loved to go except I was spending my last bit of time with my beloved dog who had cancer of the lymph nodes then spread to her breasts. I was reading your blog and can relate to EVERYTHING, having dealt with chronic pain for 15 yrs now after ripping internal stitches after a hysterectomy causing nerve damage which took 13 yrs to diagnose. I recently had a nerve block for my unbearable bladder pain and am very happy to report it was very sucessful and not the awful procedure I was expecting at all. The 1st one a temporary one allowed me to sit up straight for the 1st time in 15 yrs, I had my 1st permanent one a few mths ago with good results not perfect so I am having a 2nd one within a mth. Along with botox injections in my bladder for pain and having to tinkle 50-60 times a day I have improved I would say 70% and am now out of bed getting my life back. So I would say to you have hope/faith. I had to do all the work, research, getting to the right specialists, getting 2nd opinions when refused a nerve block the first time etc. I never gave up hope that I would get better or at least get back my life enough to enjoy it vs struggling to stay alive bc of the pain. Do you have a pain specialist? You mentioned you don’t take ur pain med’s much. Why? I use to not either I think I was trying to prove I wasn’t just after pain med’s but I wasted so much time suffering and no 1 knew or cared if I was or wasn’t taking pain med’s. It is to your benefit to do whatever is needed not to be in pain so you can enjoy life as much as possible. I too have been wanting to blog so I can help others but just keep putting it off but after reading ur blog i see how important it is for others suffering with cp to read. As we all have the same struggles and need to know we are not alone and that there is hope. So tks for that. you can email me if you like at mom002@hotmail.com. It isn’t letting me open my emails right now but I will get back to you asap. Take care Lynette Edelenbos

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    • Thank you so much for your comment. It would have been wonderful to meet you at the summit. I’m very sorry to hear about your dog.
      It sounds like you’ve been through A LOT with chronic pain. The reason that I try not to take my pain killers much is because they very often (more so the more often that I take them) make my head pain and overall ill feeling much worse. Often I also only receive minimal relief from them – not enough to make going through their side effects worth the trade off. But I do take them whenever I really need to or can’t handle it otherwise.
      It would be wonderful if you started blogging. Speaking for myself, I find it very therapeutic. It’s also a great resource for other people living in pain, to read another’s blog and see that they aren’t alone.
      Thanks again for the comment!

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