The Pain In My Face Is A Pain In The @ss

I’d like to introduce you to a condition I have called Trigeminal Neuralgia. Another one of those invisible illnesses, it has been described as “the suicide disease” by both patients and doctors because of how outrageously painful and debilitating it can be. Here’s the official description, from the Mayo Clinic:
Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.
I feel the pain just under my right cheekbone, into the right eye socket and the right sinus cavity. In fact, when I first started experiencing pain, I thought it was a sinus infection – but when none of the other symptoms of an infection came along, I realized it had to be something else. I’ve been having flare-ups of TN going back almost 14 years now, but they were so few and far between that I didn’t put a name to them at the time. It was easy to brush them off – maybe a sinus thing, maybe a dental thing…as long as they went away fast, I had other health issues to deal with and I didn’t need more. Unfortunately, over the last 6 months or so (give or take a few months), I’ve had flare-ups that have been so much more frequent, I had to finally talk to my doctor about them.
Now, before going any further, I want to tell you about my family doctor here in Victoria. His name is Dr. Gary Leong, and he is wonderful. I really lucked out in becoming his patient – he was a new doctor at the clinic where I was seeing a Naturopathic Doctor because there were no other GP’s taking new patients in the city, not since Ray and I had moved to Victoria in June of 2013. I was seeing the Naturopath purely to get some nutritional help and when she told me a Family Dr. was joining the clinic, I made sure my name was on this list asap. Dr. Leong and I had an “interview” in order to ensure we would be a good fit – I mean, seriously….who would want to take on a complicated patient like me? But…he did, and I’m so blessed. Dr. Leong is a doctor who actually listens to what I have to say. He knows that I know my body, my symptoms, what’s normal and what’s not. He knows that I’ve weathered A LOT of stuff and that I’ve been in pain for a long, long time. He knows that I’ve been on opioid medications for a long, long time and that’s likely never going to change. He knows I’m smart, and he treats me that way. I can be honest with him about my feelings, when things have become too much when I’m ready to push forward on something when I’m ready to cut back on my meds to try and wean myself down from the narcotics…he’s been the perfect doctor for me.
So, once these TN flare-ups started becoming more frequent, I finally had to speak to Dr. Leong to start medication. We’ve tried a couple of things – I was taking Carbamazepine, which is the first line drug, but it stopped working fairly quickly, so now I’m on one called Topiramate. We have to be so careful with medications because of the other drugs I take for pain, etc. The Topiramate has been working up until recently, but it seems to me that I am getting flare-ups far more often than in the past. It might be time for a referral to a Neurologist, and possibly a discussion about one of the various surgeries that can be done. 
When I get hit with one of these flare-ups, it starts as a mild ache just under my cheekbone. It then starts to spread to the eye socket and sinus cavity, and completely under the entire cheekbone. The ache is gentle at first, almost teasing, and then becomes absolutely relentless. There’s no one place to pinpoint where the pain is….it’s just “there” and steady without a break. It begins to feel like tiny little hammers are hitting me…not quite enough that the actual hitting is painful, but the endlessness of it is instead. And because there’s no one place that hurts more, there’s no place to put ice or heat, etc. that helps. Neither helps the pain, and neither do much for distraction either. There’s also no rhyme or reason on how long it’s going to last. Sometimes it’s 30 minutes. Sometimes it’s 12 hours. However long it goes on for when it’s finally done, it feels like I’ve been punched in the cheek over and over and over but the bruises are all on the inside. The gentlest touch on my skin is agony, yet all I want to do is press my fist into my face as hard as I can at the same time. Yes…there is a reason it’s called the suicide disease.
As you can imagine, because this is an invisible illness, you would never know I was experiencing a flare-up unless I told you (or you were allowed to watch me if I let down my guard). So, stop for a minute. Think of the last time you were out for the day…shopping, working, working out, whatever. Think of how many people you might have run into or interacted with on that particular day. Do you think you could have picked out the one who was having a flare-up? I can almost guarantee you that somebody YOU interacted with on the day you chose was fighting some type of invisible illness, be it TN, Fibromyalgia, Arthritis in one of it’s many, many forms, or more. This is why I chose to start writing this blog – to help educate people on the fact that there are so many of us out there who are living in Chronic Pain from something, yet you might never realize it. We want so badly to be seen as “normal” i.e.: healthy, that we often push ourselves way past our limits, just to fit in. Or, you never see us, because we’re too unhealthy to get out in public much anymore, period.
I hate TN. I hate the invisible illnesses my dear friends suffer with (migraines, cluster headaches, Fibro, and more). I hate that we are living in pain with no end in sight. But I’m glad that more and more people are learning about us, and wanting to know more about these illnesses. I’m always happy to answer questions – just fill in the contact sheet and I’ll get back to you as soon as I can.
Until next time….remember…
there is always hope

Can You See Me Now?

Welcome back! I want to talk about being invisible. As in, having an invisible illness, where you can look perfectly fine on the outside but the inside is a completely different story. The people who live with conditions with names like Fibromyalgia, Arthritis, Migraines, Ehlers-Danlos Syndrome, Autoimmune Disorders, Sjogren’s Syndrome, Bipolar Disorder, Depression and/or other Mental Disorders…and the list goes on.
When you have an invisible illness, it seems like you have to fight to have your illness be seen as “legitimate” compared to someone who uses a mobility aid like a wheelchair or a cane. Anything that physically shows you to have an incapacity makes it easier for others to show acceptance and tolerance of your limitations and abilities. When you look fine on the outside though, it’s just another battle to face. Heaven forbid you park in a handicap parking space, even if you have the appropriate placard. The looks and the confrontations for not being “disabled enough” are frightening and you have to have a strong backbone to put up with the comments you might receive (not easy when your backbone is covered in bone spurs!).
Does anyone remember the old story The Picture Of Dorian Gray? About the man who stayed perpetually young, while his painting grew older and older? I think about invisible illness in a similar way. A Picture of Dorian Pain – where everything on the outside stays the same, but your insides grow withered and ugly. It’s not pretty, but it’s the reality we all face. And yes, we ALL wish things were different.
It’s also hard to explain to people why you’re able to do certain things one day and then not be able to do them again the next day – or do much of anything the next day. It takes so much energy to push through Chronic Pain, Fatigue, Depression, etc. that a simple task today may render you too exhausted to do anything but move from bed to recliner the following day – that’s certainly the pattern in my life. Everything has to be planned out so carefully to make sure I’ll have the energy to do what needs to be done. Dealing with chores and household tasks are aggravating enough, never mind wanting to do something fun.  Here’s a post I wrote on Facebook back in August of 2011 that really captured how I was feeling about that subject:
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This note is purely venting – no comments and/or replies are necessary, but I am completely and thoroughly peeved that my life is slowly being stripped of anything fun. Everything I do now is based on how I’m feeling…or how I might be feeling in a short period of time…and so on and so on. I’m peeved about having to cancel plans and I’m peeved that everyone can just go have fun whenever they want…and I’m peeved that even when I have my hip replacement surgery, it’s only going to “cure” a small portion of my health issues. I am worn out from trying to stay positive and if pain were a person right now, I’d kick it’s sorry @ss from here to Hell. *vent over* Carry on…nothing left to see here.
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I know that many people have heard of the Spoon Theory by Christina Miserandino, but if you haven’t, I’m sharing it with you here. It’s an excellent example of how we invisible people must be so careful with our energy. We want to do so many things…we want to be like we were before, having fun with our family and friends, doing spur of the moment activities, just because we can. We may look like we’re capable of it on the outside, but unfortunately…the Invisible Us makes it all so difficult.
I know this sounds like a big bunch of complaining, but really, it’s just stating the facts of what people with Invisible Illnesses experience. It’s a chance to educate others who are quick to judge when they see us looking “fine” on the outside – to help understand what our insides are really like. We want to belong, we want to do things like before, we want to feel healthy and well and normal and good. Right now though…this is our reality. Please look beyond what you see. We’re still the same fabulous people we’ve always been, but we just have a new reality now.
Until next time, remember…there is always hope

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 afterward, 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 from 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 (haha!), 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