…Two Months Later…and counting….

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”.

IMG_5381

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!!creme-brulee-83422-1

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?

AshleyMomFeb2018

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:

PamJulie

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!!!!

Schlemiel! Schlimazel! Hasenpfeffer Incorporated!!

Remember…there is always hope!

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……”

Carry on…

 

 

About LadyPamelaRosehttps://pamelajessen.comWelcome! This blog is my life with Chronic Pain, Chronic Fatigue Syndrome, and living with Invisible Illness, including Fibromyalgia, Osteoarthritis, D.I.S.H., Hip Replacement, Trigeminal Neuralgia, Myofascial Pain, Diabetes Type 2 (on Insulin), Gastroparesis, Hypothyroidism and Bipolar Disorder. Despite this, I am also a volunteer with Patient Voices Network - an organization in British Columbia that allows everyday people to have a voice in how healthcare is delivered in our province. I also volunteer with Island Health in a similar role. I want people to know they can have a say in BC's Health Care and that voice can be in any number of different ways. It's important for our voices to be heard and I love to talk about how that works!

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