Interview October – Char

I’m starting a new feature! It’s Interview October, where I’m kicking off an entire month of guest posts with fellow bloggers who also live with Chronic Pain and Invisible Illness. Let’s start off the series by meeting the lovely Charlene Schoeman:

Char

Introduce yourself and tell us a bit about you…  

My name is Charlene. I was born and raised in South Africa, I then moved to Italy where I taught English to adults and children of all ages. After ten years in Italy, I moved to England where I was a Teaching Assistant, working one-to-one with disabled children. I loved my job!

Chronic illness(es)/disabilities I have… 

In 2014 I was diagnosed with Premature Ovarian Failure, which is basically early onset menopause and then in 2015, I was diagnosed with Chronic Fatigue Syndrome (Myalgic Encephalomyelitis). I have been housebound and often bedridden since.

My symptoms/condition began… 

My problems started in 2014 with a lot of pain all over my body. Doctors did all kinds of tests and could not find anything wrong with me, so I was sent home with painkillers. The pains were mainly in my joints like my knees, hips and fingers and also in my larger bones like my thighs, shins and upper arms. It was an intense stabbing and shooting pain and it would move around.

I was also picking up every bug that went around, working in a primary school meant that I was ill every other week. I started feeling guilty for taking so much time off. The day it really hit me was actually 1 April 2015 – I was cycling with my dad in Italy while on Easter break and I lost my voice, later that evening I had a sore throat and earache – I have been at home since. I did try returning to work a few times after that, but never made it through a full day and would then need days off to recover from those few hours at work.

My diagnosis process was… 

I initially went to my doctor in Italy and then again in the UK for the ear and throat infection that, despite multiple courses of antibiotics, was only getting worse. It lasted over a month. When I continued to deteriorate and started feeling really weak and exhausted, they did loads of blood tests to try to find the cause of my symptoms. They tested me for deficiencies, for infectious diseases and I’m not even sure what else. My doctor just kept saying she would test for this and that “just in case”.

All tests came back negative – according to my blood and urine, I was healthy. But I was in so much pain and so weak. She said it was likely Post Viral Fatigue. I was not convinced of this diagnosis. It sounded way too mild for what I was going through!

I then had a routine visit to my endocrinologist for my ovarian issues, I mentioned my symptoms to him and he was concerned. He had me tested right there and then for a few more things in his department and booked me to test for Adrenal Failure, prescribing an emergency supply of cortisol for the meantime, just in case. Again all tests came back negative. He said it was likely Chronic Fatigue Syndrome.

All tests were done twice, a few months apart and again everything came back negative – healthy. I was then referred to a Chronic Fatigue Clinic by my doctor and after a 2-hour assessment with a psychologist, they reported I was mentally sound and they agreed that I have Chronic Fatigue Syndrome.

The hardest part of living with my illness/disabilities is… 

The hardest part about living with Severe ME/CFS is not being able to do everything I want to do and love to do. I cannot work, I cannot cook, I go months without being able to paint, I can’t do gardening, go for walks and explore nature, I can’t leave the house or travel or swim, or help my family if they are ill. I can’t even bath more than once a week! It’s having so many plans and dreams and goals – daily – and not being able to accomplish even one of them some days – many of those days are spent in the dark, unable to tolerate open curtains or light. But I continue to plan and dream!

A typical day for me involves… 

My typical day involves me waking up early, lying in bed for hours “waking up”, I walk to the bathroom with my walker, I sit on it to brush my teeth, I rest back in bed after bathroom trips. I read a little. I pray. I check my social media accounts and respond to messages. I might just lie there daydreaming for a while in between all these things. I try to write something in one of the many drafts I have for my blog. It takes a long time to complete a whole post! I usually don’t finish any of these activities.

Then it’s lunchtime, my sister (who is my full-time carer) brings my lunch to my bed or to the sofa if I have managed to get to the living room. I eat reclined and then lie down for hours while digesting. This is when I usually watch Netflix… I just watch it until digestion is done and I have enough energy and cognitive function to recline again and read or write some more or do some art or craft while reclined.

During better months I might sit at my desk for a few minutes and watercolour. I have my pages cut to small postcard sizes so I don’t have huge projects that never get finished. Even the small ones will take a few sessions to complete.

Dinner time is the same as lunchtime. Eat, Netflix, then try to do something online again. Having such severe ME/CFS means I’m completely isolated and housebound, so my only connection and contribution to the outside world is online. It helps that most of that can be done on my phone which is easy to use and light enough to hold most of the time – though there are times daily that I am unable to hold my phone too!

The one thing I cannot live without is… 

The one thing I cannot live without is God. Honestly, I don’t know how I would be this positive and hopeful and at peace without His joy and peace that passes understanding. Also, my sister. She is such a considerate and selfless carer.

Being ill/disabled has taught me… 

Being ill has taught me to be less judgemental of others. We never know what somebody is going through. Our problems are not always visible. I’ve also learned that there is no one-size-fits-all solution to any health problem. Eating fruit and doing exercise can actually make some people much worse. Including me. Who knew? I would never have imagined that.

So my biggest lesson is to listen and not judge, and no matter what, be kind always because you don’t know what somebody might be going through.

What advice would I give someone recently diagnosed… 

My advice to newly diagnosed patients is to listen to your body. Symptoms are real and they not only tell you there is something wrong, but they guide you to a solution too. If you’re exhausted, rest. If you’re hungry, eat. Your body is in a constant fight to survive and heal and recover… listen to it and be your own health care advocate. Find people who will listen and understand you. Get connected online with people going through the same things. You do not have to walk this path alone!

My support system is…

My support system includes my sister who is my full-time carer, our parents and my online support group for people with ME/CFS.

If I had one day symptom/disability-free I would… 

If I could have one day completely symptoms free I would want to spend the day out with my family, swim in crystal clear waters, go walking in the countryside up hills and mountains to enjoy the views and eat all the foods I cannot eat in my condition – things like gelato in Italy, mums roast dinner or pasta al ragu, and just so many other things… I’d also dance and jump and do cartwheels!

One positive of having a chronic illness/disability is…

Depending on the symptoms and severity, which in my case fluctuate a lot, one of the benefits of having a chronic illness has been having the time to do some things I couldn’t do before. For example, I can draw and paint and blog and read and watch lots of films – I never had time for those things while working, even though I have always loved them.

Another great benefit I’ve had from this illness is community. Getting to connect with so many amazingly strong and resilient human beings from all over the world. Hearing and sharing their stories and supporting each other.

My links are:

http://chronicallyhopeful.com

https://www.facebook.com/chronicallyhopefulblog

https://www.instagram.com/chronicallyhopefulblog

https://www.twitter.com/chronic_hopeful

Staying Connected…

Here’s a quick question for you. When you are a patient in the hospital, what do you do for entertainment? Do you watch TV? Read a book or magazine? Surf the internet or check out Facebook? Go for walks or check out the Gift Shop? Or are you mos….woah, woah, WHAT????
GO BACK…surf the internet? Check out Facebook? Don’t you use up a lot of your Data that way? Or does your hospital provide free Wifi?

I was recently invited to be interviewed for a news article about the Nanaimo Regional General Hospital, as it’s the first hospital in BC to offer free Wifi for patients and visitors. Now, we’re not talking blazing fast for video downloads, but good basic Wifi for surfing the Internet while you are in the hospital. I don’t know if this is offered where you live, but it’s brand new for us. There is one other BC hospital trialling this, and the BC Ministry of Health hopes to roll the program out to the rest of the province, though there is no set timeline.

I can tell you from my own experience that this is a very welcome move. I’m not a TV watcher (I don’t even watch at home) and I often don’t feel like reading. So what’s left? I listen to music a lot, but when you hallucinate music, that’s not always the first choice either. Having the chance to message chat with a friend or to be on Facebook or Twitter really appeals to me and I think this will be a very popular decision.

Here are the transcript and sound bytes from the interview:
~~~~~
Patients and visitors to Nanaimo Hospital can breathe easier knowing they won’t have to worry about racking up high cell phone bills.
Island Health announcing today they’re introducing free wi-fi at the hospital.

Patient partner Pamela Jessen says when it comes to Data usage, it removes a heavy burden from people already in a stressful situation…

Island Health says they hope to expand free Wi-Fi to more of their sites, but there’s no timeline yet in place.

Free Wi-Fi at Nanaimo Regional General Hospital means patients won’t have to feel isolated and disconnected.

Island Health announced the service today, saying the Wi-Fi will be for keeping in touch and using the internet but won’t be able to handle high-def video streaming.

Pamela Jessen with the Patient Voices Network says it removes a great burden from patients but also their visitors…

The service is expected to cost roughly five thousand dollars a year. It’s paid for by the Nanaimo Hospital Auxiliary, who raise funds for the hospital.
~~~~~
What about you? Your thoughts in the comments would be appreciated!

As for this idea spreading far and wide?

There is always hope!

Something Strange in the Neighbourhood

I don’t know what is going on with my posts and why the spacing is a problem now.

If you notice anything weird in my posts, where the paragraphs aren’t separated properly or things like that, just let me know. On my computer, I see a problem, yet when I go into WordPress, everything looks fine, even when I switch over to HTML. And even if I refresh my page using CTRL + C, I still see the spacing problem between paragraphs.

I’m writing this post in HTML to see if it makes a difference and I’m putting a picture of these guys in it to see if adding a photo changes anything:

ghostbusters-36

It shouldn’t cause a problem, but hey…it’s me and my page and just like my body…who knows what could be going on. Maybe it’s a ghost and maybe I was meant to write this ghost post.
and wow…two posts in a single day from me, both of them barely worth reading. I’ll try and work on my content for you. I’m sure I can do better. I’ll blame it on Dorie, my cat. She’s laying so close to my arm, I can barely type never mind think. Don’t believe me?DorieandPam''sArm

Remember…there is always hope!

ps: it looks like I need to write in HTML all the time…it worked just fine!

😉

Needle-ittle Update On Things? Sure!!

I’m so funny! I make me laugh!!
Okay, first of all, welcome back! Now, I’m not sure if I’m welcoming you back to the blog, or myself. Honestly, it’s like I write in 2 month spurts, but I know I have so much I want to say….it just takes forever for me to feel well enough to write, and then I start and then I get tired and then I stop and then I get energy and then I start and then I get tired and then I stop and then I get energy and then…and then…and then. Well, of my 12 followers, and the few others who read this but don’t follow me (and you shouldn’t…I get lost a lot…more on that below too!), you probably know me well enough to know that my Chronic Pain and Chronic Fatigue pretty much rule what I can and can’t do. So, I write when I can, I keep short notes to add here later on when I’m able. Such as my hubby Ray and I heard that a dear friend of ours in Calgary was going through an extremely upsetting situation and facing some immediate financial challenges so daunting, she could lose her house. A mutual friend set up a Go Fund Me account for her, but Ray and I sent her an immediate $500 to help her right away. I wanted to share that because it was such a blessing to be able to help in a bigger way this time rather than just a phone call to tell her we were praying and that she was loved.
So, continuing with the story, I took my injection kit and headed off to see my Physiatrist, Dr. Winston on the morning of March 8th, all bright eyed and bushy tailed. He came into the examination room and asked if I had the Synvisc with me – it felt so clandestine (“Hey Rocco…you got the stuff?”). I gave him the box and told him I had a feel-good story for him about it. I mentioned in my last post that the cost for Synvisc-One is quite expensive – $481 to be exact, and when I had called my benefits provider, they had told me it wasn’t covered so we would have to bear the cost of it ourselves. Fine, no problem.
Well, wouldn’t you know it, but when Ray went to pick up the Synvisc-One kit…our insurance company covered the complete cost, no questions asked!!!  I love it when things like that happen…I believe it was God’s confirmation that we did the right thing helping our friend in need, and He provided for us in return. I’ve probably never mentioned on this blog that I’m a Christ Follower, but there you have it…the first time said, but probably not the last!
So, back to me and my knee!! Dr. Winston had another student with him for this appointment, another handsome young fellow named Lee (are all Med students so gorgeous now, like they’re all from TV shows???). Plus, Dr. Winston had a surprise for me…he had Botox for my face!!!!  Yay!  I wasn’t expecting that, so that was a real treat! He put some ice on my knee to freeze it a bit, then asked me to show Lee where I experience the facial pain, so I pointed to the area under the cheekbone. Then Dr. Winston explained to Lee that they don’t inject the Botox under that area or the muscles would droop. Instead, they do it along the side of the face, right by the hairline, going from the temple to the jawline and injecting approximately six small shots – more like tiny pinpricks, though I could feel the Botox spreading (more like oozing) as he did it.
I’ve had Botox injections done before, in other, more intimate places for muscles and it’s really not painful. So, he went ahead and did those injections while the knee froze, and it was quick and painless. After that was done, he got busy with my knee. The first injection was painful and he pointed out to Lee that you could physically see where I was shutting down because of pain…it was just agonizing!! Dr. Winston then injected some local freezing into the knee area and waited for it to take effect before injecting the rest of the Synvisc-One, which went smoother but still painful.
He told me to stay off the leg for the next couple of days and asked me to call him in a month to follow up, and then see him within 6 months for a follow-up appointment. So…what did happen after a month? Well, I’d say neither of the injections really did what I wanted them to do.
For the knee, there was a tiny bit of pain relief in the beginning, but after the first two weeks, the knee went back to collapsing with the sharp bolt of pain and the ache was there again, just as before. And with the face, I had a major TN flareup a month after the Botox, and have had several more since. I didn’t call to give him the follow up in the month after (probably because I was in the middle of the TN flareup then forgot), but now I need to call him to make an appointment because my right shoulder is giving me major grief. I mentioned it to him at the last appointment, and I’ve been doing the exercise he showed me, but I have a feeling I’ve damaged the rotator cuff and might need a surgical solution.
So, that’s where we’re at with those body parts. In other health news, I’ve had increasing auditory hallucinations, that continued to get louder and louder in my head, and the voices started getting louder as well. I was also able to distinguish the voices more clearly. They’ve always sounded more like “talk radio” but this time I could make out women’s voices and very clearly heard the word “her” being said over and over. At one point, I start having a panic attack, everything was so big in my head. Ray had his own Dr. appointment w. Dr. Leong and I gave him permission to talk about me. He told Dr. Leong that he was worried and Dr. Leong told Ray he wanted to see me asap. I went in the next day and Dr. Leong asked me if I knew why I was there. I answered, “because my husband loves me”. We’ve done a major prescription change…I am completely off the Seroquel for my Bipolar Disorder and I’ve started taking Abilify.
I think there’s been a huge difference already. The hallucinations have settled down, I have a bit more energy overall, I’ve lost a bit of weight, and I think my blood sugars have stabilized as well (it can affect a Diabetic’s blood sugars in both directions so I have to test my blood a little more frequently). I see Dr. Leong again on June 13th so I hope it’s all good news to share with him. It will be the first time in a long time I feel like I have good news to share!!!!  And in other news regarding Dr. Leong, he’s leaving Herald Street Health and moving to Mill Bay, BC, which is up the Malahat Hwy heading towards Nanaimo. He’s offered to keep me and Ray on as patients and I’ve accepted. Ray will just take time from work to drive me to appointments as mostly they should be every couple of months for prescription renewals and my Diabetes checkups, so nothing urgent. Ray will schedule his appointments with mine for the rare times he needs to go, so it should work out fine. Dr. Leong isn’t keeping a lot of his patients, so I feel blessed and honoured that he’s offered to have me stay with him.
Okay…enough of my health…let’s move on to what happened on our Seattle trip. I wanted to quickly say that I met up with my dear Chickie, Carrie Ann and she is just as delightful in person as she is online. We met up with two other lovely online friends from our Bloggess Pals group – a group of ladies who all love Jenny Lawson, the Bloggess.
Megan, Kimmy, Carrie and myself spent a few hours at Starbucks near our hotel, talking and laughing like we’d known each other forever!!!! We had the best time and it was hard to say goodbye.


Carrie then came to Victoria for a week with Ray and I. We went whale watching and shopping and hung out at home watching movies and just had a lovely time together!! I miss her very much. oxoxoxoxox

And how else have I been keeping busy? Why…volunteering of course!!!
I was not able to take part in the “Train the Trainer” course after all. I was having a lot of problems with energy and pain and I knew I wasn’t going to be able to bring my best self to the table, so I canceled with sadness. Fortunately, another opportunity came up for me to help others. I am going to be a Patient Speaker at the Island Health CARE Orientations. These orientations are for people who want to become volunteers just like me. Island Health is the Provincial Health Region I live in. Patient Voices Network is the Provincial Wide organization that I volunteer for. I wanted to make that distinction. I start on Thursday, June 14th by attending a CARE Orientation as an Observer, then attend a 2 hour coaching session in August. Once that’s finished, I’ll be put on the 2018/2019 Speaker Schedule and will speak 2-3 times (possibly more) in the Victoria area.
I continue to sit on the two committees mentioned earlier; the BC Emergency Medicine Network (@BCEmergMedNtwrkand the PVN Oversight & Advisory Committee (@PatientVoicesBC). My partner with the BC ER Medicine Network is Jolaine Cowherd – she and I are busy updating all of the Patient Information Sheets that are provided there. These are the sheets Doctors give you regarding various conditions when you are discharged; what to expect when you leave the hospital, what to do if your condition worsens after leaving the hospital, etc.  These are then approved and uploaded to our network so the information is always kept current. I also designed the sheet that Jolaine and I are using to update the information, as there hadn’t really been anything in place before – I’m not sure there had ever been a review process in place, and that’s why this volunteer position became available.
My role as Co-Chair of the O&A Committee has been a busy and enjoyable one. I’d been working with Ben Ridout, but he has now moved on to a newly created role, more tailored to his overall background, so I have a new partner in crime! Meet Teresa Bissenden! She’s absolutely delightful, as smart as Einstein, adorable as anything and is an amazing facilitator. We have been working together for a couple of months now and as the last thing that Ben and I decided, the main task for Teresa and I was to organize a Face to Face meeting for the O&A Committee. It would be the first meeting for many of us as the term for Committee members is 2 years, and so a great opportunity for Teresa to meet everyone as she starts her new role. So, that’s what we did!
Teresa and I worked on the agenda and then she and her amazing team, including Denise Pinto and Irena Apostu did the hard work of coordinating all the details, including travel, food, etc.  As a Certified Event Planner, I can tell you it is a HUGE job organizing these types of meetings, especially when you have people traveling from all around the province, including very remote locations. Everything was done very well…we all raved about Denise’s choice for lunch…delicious Indian food including fabulous Butter Chicken and Rice, and we all worked extremely hard on our agenda items, to successfully end the day with a finished document to present to the Ministry of Health. It was emotionally draining for me and I admit, I cried at the end when we were going around the circle giving our final thoughts (more about that below).
During our lunch break, I was supposed to be giving an interview to a reporter from a Nanaimo newspaper. He had contacted Teresa as he wanted to talk to a “patient partner” to get their feedback regarding the possibility of having WiFi in the Nanaimo hospital and all hospitals. The interview was scheduled for 12:30, but when we called him, he wasn’t around. His colleague offered to do it, but when I asked him if he knew the subject matter well, he said “not really”, so I said I’d rather do it with Spencer, the original reporter who requested to speak with me. I left my home number and asked for him to phone me this coming Monday (tomorrow) so we’ll see what happens. Not sure why he wasn’t available since he was the one who wanted to talk to me, but we’ll find out tomorrow I guess.
And now it’s time for some funny stuff, some sad stuff and some “you have to laugh about it now” stuff. After the meeting, I was so tired and emotional, I canceled my dinner plans and headed to the airport early (I knew my dear friend Donna would understand and she did). My flight wasn’t until late (10pm) so I realized I’d have a long wait – probably 5 hours, but I was hoping I could find a quiet corner and just rest. I hadn’t slept well the night before and actually not for several days prior, as is normal for me. I was also feeling emotional as I mentioned. The news about Kate Spade’s suicide had made me sad and then finding out that Anthony Bourdain had committed suicide that morning (June 8th) had really upset me. It wasn’t until I was home that I realized all day, in the back of my mind, I was worrying how many of the successful ladies I was with all day were struggling with depression and/or suicidal thoughts of their own if any. Would I be able to tell? Could I help?
After leaving the offices where the meeting was held, I started walking towards the Skytrain station to catch the train to the airport. I had already checked in for my Westjet flight and printed my boarding pass, and I only had my purse, a small bag, and my walker. It was pouring rain and I was wearing a long sleeve long sweater, just a thin one, but the station is only a few blocks away…I love that convenience of the offices being so close!!!  Except….this time I had a brain fart. My brain somehow thought the station was somewhere else. And I forgot to walk ONE BLOCK and turn right and just kept on walking straight. Did I mention it was pouring? Yes, I did. And I kept walking, thinking to myself, “Self, if you just walk to Burrard and then turn right, go down a couple of blocks, it’s right there”. But Self thought differently, and I turned when I shouldn’t have and then kept on making turns and walking down roads while getting wetter and wetter and more emotional and more emotional until almost 30 or 40 minutes later, Self finally stopped at a Bellhop at a fancy hotel to ask for help, since Pride took a hike a long, LONG time ago. This handsome young man looked at me and asked me if I was okay. Me, with tears in my eyes, replied: “I just need to find the Waterfront station”.
He replied back, very gently and very carefully “it’s right across the street Ma’am. Just go up to the lights, cross at the intersection and enter through the main doors to the elevator”. I’m not sure if he thought I was going to hit him or hug him but at any rate, he stepped back a step, and I just looked at him with tear filled eyes, whispered “thank you” and trudged away, dripping wet. I found the entrance to the station, stopped inside, and then started to sob. Huge tears start falling down my face and now I’m starting to shake. I stood there, just trying to breathe, but more and more tears are falling, so I just let it out of my system…I don’t care who sees me. No one stops but I don’t care. After a few minutes, I feel a bit better so I try to wipe my face with a soggy Kleenex until it falls apart on me. I headed over to the Ticket machine and now I have to figure out how to buy a ticket to the Airport. And I start crying again. Then I spot two Customer Service agents…I walk over to them, still with tears. One of them sees me and with concern asks “may I help you?”. I look at her and then totally lose it.
“I..am…having..a “sniff” …very…”sob”…fifficult..time…”sob”…with..the “sniff” …ticket…ma..ma..”sob”..chine”
Oh, my word. The two of them couldn’t have been nicer or more helpful!!! One of them hugs me and asks if I’m okay. I nod and manage to tell them how I got lost trying to get there and she’s fussing over me and how I’m wet and she’s picking wet Kleenex off of my face and the other is helping me get my ticket and I’m giving her my money and the first one is telling to make sure I get on the YVR train, not the other one and then I’m all set. Honestly, I couldn’t have done it without them. Well, I probably could have, but I’m oh, so glad they were there to help. I was so wet and cold and lost and overwhelmed and emotionally overloaded….a breakdown in the Skytrain station is the last thing I needed!!!
So yes, I made it to the airport, found a quiet spot, rested, caught my plane and of course, made it safely home to the arms of my husband!!!
And to finish up this blog post and get you totally up to date, today, June 10th is my wonderful husband Ray‘s birthday!!! I love this man so much!!! We’ve had a wonderful day together…I went for my first motorcycle ride in 2 YEARS with him – only to Denny’s for his birthday lunch but it was a start. He’s done some gardening, I’ve updated all 12 (and more?) of you and he’s in the kitchen, making something wonderful for dinner. Last night, we were at a Slegg work sponsored event at Western Speedway which was great fun!
So my friends…there you go. Everything that’s been going on for the last couple of months or so. As always, I promise to do better at staying up to date. As always, I’ll probably fail. But…I’m never gone forever unless I die. So let’s hope that doesn’t happen. Because now, when I end with my motto like I always do, it’s gonna sound weird.
There is always hope.
ha ha ha…I kill me.
nope…still weird!

cobwebs…

Screen Shot 2018-05-10 at 2.23.47 AMoh…hello there….how are you? Hope I didn’t startle you…my name is Molly, and I’m from Magic Clean
Screen Shot 2018-05-10 at 3.06.11 AM
I’m just cleaning up the mess here…it’s been so long since Ms. Pamela has stopped by, and the cobwebs were getting out of control. I thought I’d better get the place back in order…I hear that she’s going to start writing here again!
How is she? Oh, there’s been so much going on in her life and you know, as a person with Chronic Pain and with her Chronic Fatigue Syndrome, it can be SO hard for Ms. Pamela to keep up with her blogging. I mean, I know she wants to stay regular….oh dear, hee hee hee, that’s not what I meant (although she does want that too!). I mean, she wants to write on a regular basis, but sometimes, it’s just not possible.
Anyway, she WILL be back soon, VERY soon, so let me get back to work here and get the place sparkling clean. You’re welcome to help if you want! Thanks love…grab a duster!
 
the-baby-mop-try-it-you-need-it
ps: just so I don’t upset anyone with the sweet image of the baby above being used as a duster, here is a proper duster image. I don’t want to offend people on Ms. Pamela’s blog. That’s not the intention at all. Thank you.
 
 
FluffyDusterDog
 
 
Wow! You people are sensitive. For the last time then…
 
 
vibrant-white-owl-christmas-decorations-tree-snow

Happy New Year

I’ve been reading so many Facebook posts from friends and friends of friends, all saying what a terrible year 2016 was, and how they can’t wait for 2017 and how it better be better. Here’s my response:

Even throughout the dark days I did have in 2016, and there were many, and all the awful things that happened in the world, you won’t hear me put the year down, because there were also so many good things that happened too.
I prefer to spend my energy focused on the good – all the people who came together after every tragic news story. All the people who came together to mourn and tell personal stories after each celebrity passed away – stories of their charitable giving we knew nothing about, or how they reached out to others in ways we didn’t know. I prefer to remember the spirit of humanity at work at Aleppo, or the number of people who gave to help others this Christmas, even if it was a sacrifice for themselves.
It’s too easy to say “2016 was horrible” because the media makes it easy when they bombard us with horrible stuff. Sometimes you have to dig deep to find the good stuff, but it’s worth it. So, that’s what I do, and that’s why I’ll never say it’s been a terrible year. It’s been an amazing year, in so many tiny, fabulous, courageous ways. And I expect even more in 2017.
To anyone reading this, Happy New Year. My wish for you is more of everything that makes you happy. Stay safe as you celebrate and remember:
IMG_3031

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