the first post…

Well, here it is. The first post on my new blog “there is always hope”. I’ve decided to start a blog to share my experiences with having an invisible illness (or in my case, illnesses), as well as to document my journey through having a Total Hip Replacement. Thanks for joining me!

My name is Pamela. I’m 54 years old, living in Victoria, BC (Canada) and married to the most amazing hubby a gal could ask for. Ray has been by my side since we first connected in 1994, through a telephone dating service, back before the internet was even a thing. We hit it off immediately and after chatting for 6 weeks, finally arranged to meet in person. He cooked an amazing dinner, I made a fabulous dessert, that first date lasted for 3 days and the rest as they say is history.  😉

Cruise002

I have 2 children from a previous relationship. They are now adults – Troy is 34 and lives in Calgary and Ashley is 33 and lives in Vancouver. Ray and I are also grandparents to three cool boys – Eric (17), Jeddy (15) and Calen (11).

For as long as I can remember, I have always had some type of pain in my life, generally in my hips. Even back in my elementary school days, taking part in Phys Ed was tough – a lot of the stuff we did left me hurting so bad for days afterwards, I just knew it wasn’t “normal”. I saw doctors, who basically said it was growing pains, but when you top out at 5’2″ as an adult, I tend to think that might not be the right answer. Something else we checked into related to a condition I was born with, called Brachydactyly. I have bone missing in my ring fingers and corresponding toes, which makes them much shorter than they should be, and there’s improper knuckle formation as well. But, no…that didn’t seem to add up either, so basically, doctors had no answers and I was left to deal with it.

I learned to cope with it – it wasn’t agonizing or ruining my life, it was just different than what everyone else seemed to experience. Now of course, when I look back on it, I can see that I likely had Fibromyalgia as a pre-teen/teenager and may have been developing osteoarthritis at an early age as well.

Fast forward to adulthood though and the health issues are a lot more complex than “growing pains”. The list is long, but it’s all a part of who I am:

  • Fibromyalgia
  • Osteoarthritis in most of my major joints
  • Myofascial Pain
  • Trigeminal Neuralgia
  • Diffuse Idiopathic Skeletal Hyperostosis
  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Raynaud’s Disease
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain

  • Diabetes Type 2 (on insulin)
  • Bipolar Disorder

I haven’t had a pain free day in so many years, I don’t think I can even remember back that far. In 2004, I had surgery for severe Gastric Reflux disease, which led to some nerve damage around the sternum area. Over the following few years, I have several other surgeries and hospitalizations, including having my left ovary removed after a cyst burst (2006). Then my gallbladder had to be removed in an emergency surgery (2007) and 2 months after that, my right ovary was removed, again in emergency surgery (2007). Those last three surgeries all happened within 6 months….my body was completely overwhelmed and I went into a major Fibromyalgia flare up that I don’t think has ever completely gone away. My daily pain is generally a 4-5 on the pain scale – and that’s with me taking various pain medications and other drugs, and using pain management techniques. I don’t know if you’ve seen the various pain scales out there that doctors use to judge the level of pain you’re experiencing, but let me introduce you. This is the standard doctor’s chart:

Standard-Pain-Scale

This is the chart that people who suffer with chronic pain prefer to use:

ABetterPainChart.jpg

Thanks to Allie Brosh from Hyperbole and a Half for this – here’s the link to the post it originated from:  Pain Scale

So, this is the first post of what I hope will be many, to share my journey of living with Chronic Pain and Chronic Fatigue. It’s about living with Invisible Illness and often having to prove that yes, there’s a reason you use a handicap parking pass. And it will become a journey of having a Total Hip Replacement at a relatively young age (ha ha!), because I couldn’t find a whole lot of personal experiences when I searched Google. I’m the curious sort – I like to know how other people’s experiences have been. I know the clinical stuff…what I want to know is the real life stuff that patients experience. I’m passionate about that, and I’ll tell you more about that and why in another post. Until then…thanks for reading, and remember…

there is always hope

Pamela

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4 thoughts on “the first post…

  1. Wonderful first post. You and I have share similar health issues and surgeries but you have trumped me on a few syndromes, sadly for you. I look forward to reading more of your posts.

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  2. While I do have a few health issues, they, by no means, keep me in as much pain and discomfort as you experience. You are such positive person, a light in my world. Thank you for sharing, caring, and most of all, being so open and honest in your posts.

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  3. Hi Pam. 🙂 I haven’t had your experiences but I do understand what it is to be in chronic pain. About a year ago I tested positive for an autoimmune disease, Rheumatoid Arthritis (good chance I had it for quite some time before I tested positive, though). I didn’t really know much about it. I do now. And nothing I’ve read has been particularly encouraging. It’s an incurable and progressive disease. It shouldn’t even be called arthritis because it’s not. Arthritis is caused from wear and tear. RA is not. It is a faulty immune system attacking the body. And anyone, any age can get it.

    Regarding your blog post, I do see the need for a different chart….but I have to wonder why there even is a 0-2 on the Chronic Pain one. In my experience, those levels are non-existent. On good days which I call my ‘new normal’ my pain level is between 3-5. I think what many who haven’t experienced this can’t comprehend is that this new normal is a constant (and like what I imagine it must feel like to have been someone’s punching bag the day before) …and I feel this way (or worse but let’s not go there) every moment of every day. No one sees it because I am still doing most of the things I’ve always done. I’m just doing them in pain. Because, honestly, what other choice is there? The drugs I take don’t take that pain away. They only slow the disease down and help to make the really bad days not as frequent. They also suppress my immune system, lower my white cell counts and wreck havoc with my liver. So it’s kind of a no-win situation.

    Okay, all that depressing stuff aside, life still brings me joy. I have discovered that I can be in pain and still feel happiness and joy and pleasure. It’s all about making a conscious choice to feel those things despite the pain. So although this disease can sometimes beat me down, it doesn’t keep me down.

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  4. Congratulations on your first blog Pamela! it was a good read. First of many that will likely give hope to those suffering from a myriad of chronic pain issues. Like you, I have always felt that “there is always hope”. It’s not only true but a very important idea to hang onto. Life is still beautiful and worth living, just not very fair. lol.
    I look forward to reading more of your thoughts in the future.

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