I’ve been wrestling with my emotions lately and wasn’t sure if I was even going to post about them. I’ve gone from feeling quite happy about how things are going in my life to outright despair over situations I have no control over. Because I am a Christ Follower, I do pray, but there are so many times I wish I could do more for the people in my life that are suffering. It’s especially hard when my own life is going so well.
Physically, I am doing better than I have been in a really long time. My Fibromyalgia pain has been well controlled lately, without any major flare-ups, my right knee has been doing well since the Synvisc injection finally kicked in, and although the Botox didn’t work for my Trigeminal Neuralgia (I had several flare-ups after it was done), I haven’t had a major problem in the last two months. The only real problem I’m having right now is with my left foot, and what I thought was a problem with my Achilles Tendon. Overall though, my energy has been good and since my dose of Abilify was cut in half, the shaking hands and the tongue tremors and brain zaps seem to have eased up as well. My Bipolar Disorder has been well controlled and other than the fact my insomnia continues to cause major problems and I still average 2-3 hours of sleep at night, overall, I can’t really complain. I feel about as good physically as I have in the last few years and this is a real blessing.
What does have me troubled is that I have several friends who are going through really difficult times right now. One has a daughter in her 20’s with cancer, one has a young daughter with digestive issues and one has a husband with cancer. It’s hard to be so close to people emotionally and yet not able to do anything for them to help them in these battles. So, I’ve done the only thing I know how to do. I’ve sent them each a cow.
A cow named Courage.
Let me explain. I love cows…I always have. I collect them…stuff ones and china ones and figurines and you name it. I have a small collection now, but once upon a time, I had over 400 cow-related items. Now I just keep it to the figurines and stuffies, and Christmas tree ornaments. Courage the Cow was born when my very dear friend Kevin was diagnosed with Lymphoma several years ago. I sent him a stuffed cow from my personal collection to help him through his battle and now Kevin is cancer free. When I heard about my friends and the battles they were going through, I thought that perhaps a Courage Cow of their own might be a good idea. So, that’s what I’ve done. I have taken stuffed cows from my personal collection and sent them on, with a note indicating that Courage is especially talented at eating cancer cells.
Courage also brings great comfort to young children with tummy troubles – that is another speciality of his. I’ve boxed up each of these cows and sent them off and so far, two people have received theirs. The young lady with cancer has had many cuddles with her Courage Cow and has said she already feels better. She will be undergoing a third Chemotherapy treatment soon. My small friend with the digestive problems loves her Courage Cow and wouldn’t put him down. She even made room on her bed for him and apparently that was QUITE the big deal as she’s very particular about who sleeps with her. She will be going to Boston Children’s Hospital in October for a complete digestive workup to see why her bowels don’t work properly and why eating is such a problem for her. She’s 5 years old and has had problems all her young life, so hopefully, Courage will be a comfort for her. As for the final recipient, I’m waiting to hear if Courage has been delivered yet or not…I expect any day now. He discovered he had Stage 4 prostate cancer out of the blue after having no previous symptoms at all.
I’m very thankful that despite my chronic illnesses, I’m healthy in the sense that I need no ongoing treatments such as chemo, or IViG, etc. Sure, I live with ongoing daily pain and I take a bunch of medications to manage my conditions, but overall, I’m healthy for a “sick” person. I just hope and pray it stays like that. I know that I have some surgeries in my future to expect, as my left hip needs to be replaced, and a possible surgery on my left foot where I thought my Achilles Tendon was injured. Instead, it turns out I have something else, called a Haglund’s Deformity. I’ll be seeing an Orthopedic Surgeon in the near future to discuss that further. Still, I can’t complain healthwise (well, I could, but no one would listen!). I know too many people who have things far worse than me. And for them, I listen, encourage and send out cows. And I try to remind them that even in the worst of times…
There is always hope
ps: As a reminder, if anyone is interested in taking the course 31 Days of Expressive Writing for Chronic Pain and Illness that I recently completed, I have become an Affiliate and will earn a small commission if you purchase the course through this link.
The price for this course is only $39.00. There are other courses available through Esther’s site, including What Really Helps People With Chronic Pain for only $99.00, and Pacing For Chronic Pain, priced at just $69.00. To sign up for these courses, please make sure you use my Referral Number 19f3aa. Thanks very much…if you do sign up, I hope you find the course as helpful as I did.
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.
Chickie and Mum!
(L-R) Pam, Kimmy, Megan, Carrie
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
Carrie and Pam
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 (@BCEmergMedNtwrk) and 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.
So…did I mention that on Thursday, I’m having an injection into my right knee to hopefully reduce the pain I feel and help increase my mobility? The injection is called Synvisc-One and it’s described like this (taken from the Canadian website):
Synvisc-One goes to work right where the pain begins!
Lubricates and cushions your joint
Decreases pain and discomfort associated with osteoarthritis
Helps you get back to your daily activities
Helps protect your cartilage against certain damage
Could delay the need for total knee replacement surgery
The only thing it DOESN’T mention is HOW FRICKING BIG THE NEEDLE IS!!!!!!!!!!!
Whoooooooo-wee! Well, it’s a good thing that needles don’t bother me. I have no idea if the doctor numbs the area first or not, but I have been told by the Pharmacist that I should stay off my leg for a few days after having the injection done. Sure wish I’d known that sooner…I have my “Train the Trainer” course on Friday. It’ll be fine…I’ve already confirmed they’ll cover the cost of a taxi there and back (and it’s at the Royal Jubilee hospital, not Victoria General if that’s what I said in yesterday’s post). I’m also going to use my crutches instead of my cane, and they’ll find something I can prop my leg up on. I’ll take a bag lunch instead of buying something and it’s all good.
The only thing left to worry about is this…
but I’m pretty sure Dr. Winston is fully qualified.
Yeah. Pretty sure.
There is always hope!
Well, I sure hope Y’all didn’t hold your breath waiting for the next chapter in my story because if you did, you’d be dead now.
I am so sorry I’m such a crappy keeper upper of writing. Partly it’s because I sometimes forget I have a blog and sometimes it’s because I feel so crappy that I can’t write. Mostly the second one. And SO MUCH has happened since I updated last, I hardly know where to begin. So…I’ll begin with the end and then go from there.
So the answer to the big question is YES…I did survive the wide excision surgery for the mole in the Lady Garden and when the pathology report came back, apparently everything that needed to be cut away was removed, so that’s good. Unfortunately, even at this date (March 4th), there is still an area that bleeds when scratched or rubbed – like the scar tissue hasn’t healed properly. I did have problems with the dissolving stitches not dissolving properly, and the scar itself is rather thick, but I think I’ll need to go back to the Gynecologist for her to have another look at why it’s not healing well. It’s disappointing to me because this whole experience has felt “wrong” from the very first time I saw the mole, and I just don’t think the story is over, even though the pathology report came back clear. Let’s just say that for now…I don’t think the Lady Garden is totally tended to and may need some minor pruning still to yield optimum results.
So, what else has been going wrong on that’s been keeping me away from here. Well, let’s see…
First off…HAPPY NEW YEAR!!!! LOL…okay, I realize you’re reading this in March, but it’s been that long since I posted last, so I figured I’d better send out greetings. I truly hope 2018 is a fantastic year for all of you. It’s been a busy year for me so far, mostly with health-related issues, but also with a lot of volunteer-related activities as well. Ray and I had a quiet Christmas and New Year and then BOOM! right back into the busyness of life.
My year started off with a visit to a Psychiatrist, to determine if I was Schizophrenic or not. Wow…what a way to kick off a year, right? The reason for this is because of hallucinations I’ve been having for quite some time. I can’t even remember if I’ve mentioned them on this blog before, but I hallucinate music, and now, more recently voices and other sounds as well. The music manifests itself often as classical, sometimes jazz or rhythm & blues and often country (and I’m not a fan of country music!). I “hear it” on the right side of my brain, but it sounds like it’s only inside my head, not like it’s coming from outside. More recently, I’ve started hearing voices. It’s not just one voice but sounds more like talk radio, or a group talk, but I can’t make out individual words or sounds. I know it’s English, but it’s almost like the people are too far away to hear. And I only hear them on the left side of my brain. There’s no one voice trying to tell me to harm myself or other people, or anything similar….and that was how the Psychiatrist was able to determine quite quickly that no, I don’t have Schizophrenia or any other type of mental disorder outside of my Bipolar Disorder. Unfortunately, he also couldn’t tell me why this was happening.
Dr. Leong, my Family Doctor, ordered an EEG to see if there was some type of complex seizure disorder happening, or a type of epilepsy, or something else that might be causing the hallucinations. It was scheduled for March, so that was great because it meant I could plan a visit to Calgary in January to visit my dear friend Charlotte and to see my wonderful son Troy….something I had meant to do in November for Charlotte’s birthday like I always do, but had to cancel because I was too sick to go last year. It wasn’t a long visit this year, only 5 days, but they were wonderful days, just being together. I miss Charlotte so much….talking every week just isn’t enough. I so wish I was rich beyond all measure so I could have a private jet whisk me there whenever I wanted, but I guess it’s only a pipe dream if you don’t actually buy the lotto ticket!
We had a wonderful lunch with Troy…he loves to see Charlotte as well, and we all non- stop talked for the whole time we had together. My boy just gets more handsome as he gets older…he’s 36 now…and yes ladies, still single. He’s dating, but hasn’t met “the one”.
The other reason a March date for the EEG was good was that it meant I’d be able to attend the Quality Forum 2018 in February. It’s a huge Health Care forum held in Vancouver, which I’ll talk about more in my volunteer activities below.
So, back to the EEG – I had that done this past Friday, March 2nd. My technician was a gal named Regan…she was great! Really knew her stuff, had a great sense of humour, so we spent 90 minutes together while she got me ready, did the test, etc. The first part was for her to take a pencil and mark my scalp in a million places, for where the electrodes were going to be placed. Then, she took a dab of sticky glue and glued the electrodes to my scalp and to a few places on my face, finally gathering everything back into one neat ponytail!
After that, she gave me some instructions, such as closing my eyes and spelling my name, opening and closing my eyes, doing some deep breathing for 3 minutes (to a specific pattern, which was REALLY hard at the end – I was practically gasping for breath!!), and then towards the end, she placed a very bright light near the bed and told me that I would need to open and close my eyes at her command, but when they were open, I could look down at my feet and not directly at the light. That was great, except it was bright like a strobe light and I immediately got an ocular migraine, with the zig-zag pattern, but no pain. It’s not a big deal, and I know it only lasts for 30 minutes, but I was really hoping it wouldn’t happen. Oh well….could have been worse. Then the test was over, and the time had come to remove the electrodes and to clean the goop out of my hair. It actually wasn’t too bad…the stuff felt more like a hair gel than anything. My hair is quite long and straight…the stuff would have worked better on someone with short hair. She said the results would be to Dr. Leong in a week, so here’s hoping there are some answers. The last time I hallucinated was 2 days before the test and she said that things can be picked up even a week before, so if the brain was going to be able to show a problem, it would. Cross your fingers!!!!
I guess the blessing with these hallucinations is that it’s really more inconvenient than anything, but sometimes it all gets really really loud in my head and then I start panicking. The last time it was like that, I put my headphones on and watched 2 movies, trying to drown them out and it didn’t work and I got really freaked out. I found out later, I could actually call the Crisis Line and they could send a team out to help determine how to best help me at that time, so that’s a relief to know for the future. Mostly though, it’s just music in the background of my brain, and I just need to ask Ray for confirmation that it’s happening.
So, there’s been that to deal with. And then the problem with my left Achilles Tendon becoming inflammed has become more of a problem than I first thought and is affecting how I walk, which is causing pain in my new hip joint. I need to go for physio, but I just can’t seem to work it into my schedule, because it seems like every time I want to try and book it, I’m feeling like crap. There’s a physio place within walking distance, but of course, walking hurts, but if I try to take the bus, I still have to walk about the same distance to get to the bus depot. If I use my walker, it’s better than just the cane, so I’m just going to have to buckle down, set a date and go, whether I feel like crap or not. And as for the feeling like crap, that’s coming from all my normal pain issues, plus the added pain from my right knee, that is still collapsing under me with that sharp bolt of pain, even when I have the brace on (which I wear during all waking hours), plus I’m having frequent Trigeminal Neuralgia flare-ups that are just agonizing (in addition to the pain being felt in my face, it’s causing spasms in my esophagus now as well), AND I’ve developed major pain in my right shoulder and the right bicep/tricep muscles for no reason I can determine. Apparently its Frozen Shoulder according to my Physiatrist, Dr. Winston, and he was telling me that my shoulder capsule is affected by almost 50%. He showed me a stretch to do (while working me over) and holy was it ever painful.
I AM SO SICK OF MY BODY BREAKING DOWN!!!!!!!!
Seriously, it seems like every time I turn around, something else in my body is going wrong. I hate complaining; that’s just not the person I am, but this blog is where I vent and you, my unfortunate readers, get to listen. It’s just so frustrating!!! I am hoping for some relief next week though. I see Dr. Winston again on March 8th, and he’s going to do a knee injection for me of a product called Synvisc-One – it mimics the fluid naturally found in the knee and if it works for me, should help relieve some of the pain I experience from my osteoarthritis. I have NO idea if it will make the collapsing sharp bolt of pain go away, but it would allow me to go with Ray on rides on the motorcycle again and to not have knee pain 24/7. It would also stave off a knee replacement as well. It’s a 2- Injection process…1 injection every six months. We’ve checked, and our insurance doesn’t cover it, so we are paying almost $500 for the cost. I should ask Dr. Winston if there is a similar product for the hips as my left hip will need to be replaced in a couple of years as well. I am also hoping he will have some Botox in stock to inject in my face where I experience the worst of my Trigeminal Neuralgia flareups, in the hopes it will either stop them, or slow down the frequency. I’m waiting to have an MRI done (for my hallucinations and for the TN as well) and then I’ll be able to get a referral to a Neurologist to discuss having the Microdecompression brain surgery to “cure” the TN. It’s a brain surgery where they go into the skull, and put a sponge between the Trigeminal nerve and whatever it’s touching, so it stops firing off all the time.
Plus in addition to all that, I’ve been having some issues with my Gastroperisis which has been making eating difficult, and my Chronic Fatigue has made doing everything and anything soooooo difficult because I’m sooooooooo freaking tired. I can (and have) slept for days on end, getting up only to pee and MAYBE eat something, but I wake up even more tired. When I have had some energy, I’ve been trying to stay active with my volunteer commitments and wow, has there ever been a lot going on there!!!
VOLUNTEERISM…..(I actually get more than what I give…really!!)
As a refresher for what I’m doing as a volunteer right now, I am currently sitting on 2 different committees, plus getting ready to attend a “Train the Trainer” seminar, regarding Strategies in Patient Oriented Research (SPOR).
The committees I’m involved with are both through my involvement with PVN – Patient Voices Network. One is with the BC Patient Safety Quality Council and my role is with the Oversight & Advisory Committee as Co-Chair along with my partner in crime Ben Ridout. We guide the activities of the PVN as well as ensure that patient voices are included in the planning of PVN initiatives and operations, and that patients’ advice and recommendations are considered in all activities. Also, the Committee and the BCPSQC work collaboratively on patient and public engagement, with the goal of improving and promoting the work of PVN.
My second commitment is to the BC Emergency Medicine Network Team – Clinical Resources Committee, which meets quarterly via telecom from around the province. This committee is dedicated to providing the most comprehensive Canadian repository of Clinical Resources and Real-Time solutions for BC’s Emergency Room Doctors, Nurses or other medical personnel, in one easy to use location online. These resources include Clinical Summaries, ECG’s, Patient Information Sheets, Procedural Videos, plus Websites and Apps. We welcome input, and your resources to continue to grow the information we currently contain – visit us at https://www.bcemergencynetwork.ca/
Because of my involvement with PVN and with the BC Patient Safety Quality Council, I was invited to attend an annual event that BCPSQC hosts, called Quality Forum. At its bare bones, The Quality Forum unites hundreds of people working in British Columbia’s health care system to share and discuss how to improve health care quality and patient safety. It takes place over 2 days, with an additional “pre-day” of events. This year, the choices included either a day-long workshop on Designing and Delivering Sustainable Improvement or a huge array of Health Care workshops that were hosted with the Joint Collaborative Committees. In the evening, there was a ceremony to honour the winners of the Quality Awards, celebrating improvements in Health Care in a variety of different categories (in which I was a judge for this year). After the awards had been given out, the annual evening event started – Health Talks!
Health Talks is sold out every year. This year was no exception and with the lively Stephen Lewis as the Host, each of the eight participants had been invited to answer the same question: What are your hopes for health care?
Rather than just have boring old talks though, the speakers were required to use something called the PechaKucha 20×20 format, where each presentation contained 20 photos and each photo was displayed for exactly 20 seconds before automatically advancing to the next one. Everything had to be precisely timed, so you fit your talk into your 20×20 format, and it was fun to see the creativity that took place as each speaker strove to tell their tale in a way that stood out and connected you. Here is a link to the speakers, so you can find out more about them and what they wanted to share with the audience…each of them was amazing!!!
The main part of QF18 was amazing – not only were there amazing workshops and educational tracks to take part in, there were also incredible Plenary Speakers each day, plus 50 fantastic Story Boards created by various Health Care teams across the Province, each highlighting the amazing work their groups have been working on to improve processes and Patient Care. And food. Oh my goodness, the food!!! I believe there were approximately 950 – 1000 participants at the Hyatt Regency Hotel in Downtown Vancouver, and they fed us all very well indeed, with breakfasts and lunches on each day of the program, including the “pre-day”. No menu was the same and I don’t think I’ve had a fresher salad than I did there, plated before me on Thursday and Friday! Oh, and I was also reminded just how much I love creme brulee!!
Overall, it was an amazing three days of education and fun! I was supposed to fly home on Friday, but there had been snow in Vancouver that morning and my flight was canceled as Harbour Air couldn’t fly their seaplanes out of the harbour because of the weather. BCPSQC took care of booking my hotel room for another night and booked me a flight on Saturday with Westjet to get home. That flight was scheduled to leave at 2pm, but on Saturday morning, I received notification that it was delayed until 4pm. The hotel let me have a late checkout, so after sleeping in, I took the Skytrain to the airport (I haven’t been on the Skytrain since I last lived in Vancouver, so we’re talking back in 1994!!!!) and found out there were even more delays when I got there (plus a gate change. By the time it was all said and done, I finally got home at 8pm – and literally cried in Ray’s arms when I finally saw him at the Victoria airport. I had been gone since Tuesday…it was a LONG time to be away from him and from Dorie cat. I think I crashed for three full days of sleeping (and getting up just to pee, and then going back to sleep…I don’t even think I ate!) before I was recharged again. It takes a huge amount of my energy to do these kinds of trips, but the value of doing them is too important not to.
On the good side though, these Vancouver trips mean I get to see my darling daughter Ashley which is always a treat!!! Doesn’t she look lovely?
I also had the chance to meet with an online friend named Julie. She and I have “known” each other for several years now, but never had a chance to meet before this. She came with a friend to the hotel and we had a lovely time chatting over coffee…and managed to get a great “selfie” together before I had to head back to my next workshop:
So, a HUGE thank you to everyone at the BCPSQC (@BCPSQC #BCPSQC) who sent me to attend this amazing forum. It was wonderful to finally attend, as last year, I was part of the Steering Committee, but couldn’t attend because I was having my hip replacement surgery. I am forever grateful for this opportunity, I learned so much, I had chances to speak up and share my learned experiences, and I made some great new friends as well!!
And if you think all that isn’t enough, I have taken on one more volunteer assignment. On Friday, March 9th, I will be taking part in a “Train the Trainer” program through the BC Support Unit, whose mandate is Advancing Patient Oriented Research. The course material is to teach the Foundations in Patient Oriented Research, as Patients become more involved in their own care, and as healthcare focuses more on Patient Centred Care.
What is Patient Oriented Research? The BC Support Unit defines it as “research that is done in partnership with patients, answers research questions that matter to patients, and aims to improve healthcare”. Further to that, the current services that BC Support Unit offers include patient engagement, research methods support, data access & use, knowledge translation, and training & capacity development through webinars, online resources, and an annual conference. I’m excited to be able to learn how to facilitate the Foundations course, so patients…and really, that means ANYONE in BC, can learn and understand exactly what Patient Oriented Research is, and why it’s so important to them personally, and to Health Care in general.
I know it sounds like a lot, after reading this, but really, my time commitment isn’t a lot. For the Oversight & Advisory Committee, it’s a few hours for every 2 months, and for the BC ER Network, it’s a quarterly Telecom meeting right now, with some reading materials etc. to go through in between. I won’t know the true time commitment for the Patient Oriented Research after going through the Train the Trainer session, but even then, I have control on whether I’m able to co-facilitate a group or not. I’m very careful to not take on too much because I know my Chronic Fatigue Syndrome will cause huge issues if not managed properly. I’m just so passionate about helping make a change in Health Care so people can have better access to care and treatments and stuff like that, it’s hard to say no sometimes!!
Anyway, I do have something coming up soon that I am REALLY looking forward to….Ray and I are going to take the Victoria Clipper to Seattle, WA for a couple of days in April and while we are there, I am going to be meeting a very dear online friend from the United Kingdom named Carrie Ann Fitton!!!! She is my “Chickie” and I am her “Mum”….she’s the same age as my kids, and I’ve kind of adopted her. She’s quite alone in her life…she had a baby boy who died of cot death and her dad, whom she was very close with, passed away last year, so she’s had a lot of struggles. She doesn’t have much family left and no one that’s close really, except an Uncle she sees, but it’s hard, because he enjoys a drink now and then, and Carrie quit drinking just a shade over a year ago!!!!!! I’m so proud of her! She went through some very tough times – she’s got some disabilities and uses crutches to get around (much like me and my cane and/or walker) and she’s short and sassy like me, so we’re quite the pair, but I’ve been a Mum figure to her for quite awhile now and I think that’s been really good for her. Anyway, she is flying to the US in April to visit a girlfriend first, and then meeting us in Seattle. She and I will be meeting some other online friends on April 14th, then Carrie and Ray and I will return home to Victoria. Carrie will stay with us until the 21st and then fly home, and while she’s here, another online friend that neither of us has met is flying in from Toronto!!! Tanya is going to join us for whale watching and other touristy stuff, and I am SO EXCITED ABOUT THE WHOLE THING!!!!!!!!!
So, I think that pretty much brings everyone up to date on where my life has been and is at since I left you hanging at the Lady Garden gate last time!!!! I promise…on my honour, to try harder at keeping things more up to date here. I won’t even bother making excuses. I’ll just try harder.
Thanks for being so patient and reading through this schlimazel. Oh…OH!!!!
ps: Edited to add that I just got an appointment date with the Gynecologist to figure out why my surgery site from November’s wide local excision in the Lady Garden still hasn’t healed properly. It’s on March 23rd so further updates will follow. And now I have the song stuck in my head from “The Never Ending Story……”
Oh my goodness y’all….I am SO sorry that it’s been so long since my last post!!! I have been so busy since my hip surgery and recovery and every time I would come to sit and write about what I was up to, I’d get busy doing something else, and poof! Away would go my good intentions. I’m so many months behind that I almost feel like I should delete this whole blog and start over again and that way, no one would know how negligent I’ve been…well, except for you…and me. Damn it Jim!! I guess I’ll just hope my apology is enough and then try and get you caught up on the last billion months since the last post. Speaking of….hang on while I go read it, so I know where to pick up again. Be right back!
* pretend you hear birds chirping and singing while you wait*
Wow…I really DID leave you hanging!! Let me start by saying the new hip is wonderful, it works well and any and all pain that I thought was coming from the new hip is actually related to the muscles that were cut and replaced. Yep, this wanna-be doctor was fooled completely…I was sure that the popping and snapping that was going on was related to the new hip, but when a few sessions of physiotheraphy and the first set of x-rays after surgery took place, I could see that it was a tendon “snapping” as it moved over the new hip…and it disappeared very quickly as my physio progressed. Once I realized my new hip wasn’t going to fall out (a silly but common fear), I was able to attack physio a bit more agressively – or at least as agressively as possible considering the state of my other joints and the arthritis I have in them.
Gradually, as I walked more and did more exercising, everything felt more comfortable. At my last appointment with my surgeon, Dr. Burnett, on August 10th, he released me from his care as everything he needed to do is done. He said that my left hip isn’t ready for surgery yet and as for my knee and the pain and “collapsing” sensation I get, all he sees is some “minor” arthritis, and there’s nothing he can do for it from a surgical viewpoint. More on this later….
So now what? Well, this blog has always stated it’s about Chronic Pain, Chronic Fatigue and Invisible Illness. The reason for that is because my body never fails to deliver when it comes to one of those categories.
“But Pamela” I hear you ask…”what else could possibly be wrong with you?”.
“ha ha ha haaaaaa” I laugh maniacally in reply. “haaa haaa haaahahahahhahahaahaha”. Okay…perhaps a bit too maniacal. Well, the next condition I want to discuss is called Trigeminal Neuralgia. Don’t hurt yourself…Tri-gem-i-nal Neur-al-gia. It is often called “the suicide disease” because it’s so painful – it’s a chronic pain disorder that affects the trigeminal nerve in the face. In my case, when the pain flares up, it feels like a deep ache that goes into my sinuses, my cheekbone, my eye socket and sometimes into the back of my throat. Along with the ache will be sharp stabbing pain, but it’s the aching that is so horrible – I can’t even describe what it feels like, except it’s pure hell. I’ve tried ice and heat to make it go away, but nothing touches it – and none of my drugs work on it…not even my opioid medications. I literally have to let it run it’s course…sometimes it takes a day, sometimes it’s days….sometimes I think it’s going away but then it flares up again…it’s an absolute nightmare and I understand why people kill themselves.
So, why am I telling you this? Because this is one of the next battles to be faced (ha ha) and dealt with regarding my health. I saw my Physiatrist (a Doctor who specializes in Pain Management) today, Dr. Paul Winston, to discuss something he suggested once before for my Trigeminal Neuralgia (aka TN) – Botox! It has nothing to do with making me look younger, but when used for medicinal purposes, Botox can deaden the Trigeminal nerve, putting an end to pain and continuing flare ups. It’s not a guarantee and it’s not a permanent solution, but if it does work, it can offer some long term relief, with the option of repeat usage. And, when it’s done right, there’s no need to use it on both sides of the face to “balance out the features” because there will be no change in facial structure as there would be if I were using it for cosmetic purposes. Dr. Winston is working with his supplier to get more in, and when that happens, we’ll schedule an app’t and I’ll give it a go.
While I was there, we also discussed the issues with my knee – he had a Resident shadowing him named Chris, so I allowed Chris to do an examination of the knee and ask all the questions while Dr. Winston pulled up my most recent x-rays on his computer (the ones that my surgeon, Dr. Burnett ordered for our last visit). And here’s something interesting…Dr. Burnett considered what he saw as “mild” arthritis in the knee – and nothing that he could do anything about from a surgical viewpoint. Dr. Winston however showed both Chris and myself the x-ray, and the first thing he said was “now, you can see why Pam has so much pain in this knee – she has a lot of arthritis in there…and over here…and up over here…yes, and there too”. I felt vindicated…it’s not that I don’t trust Dr. Burnett – I know there isn’t anything to be done surgically yet – but Dr. Winston always makes me feel validated.
So, what does he want to do? He wants to inject the knee with Synvisc, a gel type solution that mimics the natural fluids around the knee. This will hopefully help relieve pain and help the knee move easier for at least 6 months, when another injection can be done. He’s also sending me for physiotherapy. And once the Botox is in, we’ll get that happening as well. So, all in all, a productive visit – just the way I like them!!! Oh, and as for Chris – he’s going to be a fantastic Doctor one day. Great bedside manner, excellent knowledge and he’s a total hunk!!! 🙂
Whew…I am worn out. I promise…I will start another post soon, because that’s not the end of the health issues…and I haven’t even BEGUN to tell you about the volunteer engagements I’m involved in…yes, I’m back into volunteering!!! Super happy and can’t wait to share with you all soon!
Thanks for reading and remember….There Is Always Hope!