I’ve talked specifically about a few of the conditions I live with, but I thought today I’d give you an overview of the 13 different health issues that make up who I am. Some are serious, some are just an inconvenience, but all of them are a part of me. Here’s the list:
Vulvar Intraepithelial Neoplasia 3 (VIN 3) – now healed
So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.
Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it. I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing. Of course, I have weird fingers anyway…which leads to another thing on my list.
Brachydactyly. Pronounced Brackee Dack Til ee, there are several types of this disorder and I have Type E. It’s described as such, from Wikipedia:
Brachydactyly (Greek βραχύς = “short” plus δάκτυλος = “finger”), is a medical term which literally means “shortness of the fingers and toes” (digits). The shortness is relative to the length of other long bones and other parts of the body. Brachydactyly is an inherited, usually dominant trait. It most often occurs as an isolated dysmelia, but can also occur with other anomalies as part of many congenitalsyndromes.
I was born missing the bone as shown in Type E, but it wasn’t apparent until I was about 5 or 6 years old and the ring fingers on both hands stopped “growing”. Each one is about a half inch longer than my pinkie, and that’s it. When I make a fist, there is no knuckle formation either. You can see the flatness in the photo beside my hand.
People always think my ring finger is swollen, but it’s actually the extra skin that would have covered the finger if it had grown to full length. My feet are the same way as well:
I can’t actually bend any of my toes individually – if I try to bend them, they all bend at the same time. The second and third toe are mildly webbed on each foot and then you can see how severely affected the “ring toe” is affected. That’s because of the missing bone in the foot, just like the ring finger. The pinkie toe is basically normal. Each foot is the same.
Now because this is a genetic condition, I was quite interested to see if my kids or grandkids would have the same thing, but no…I’m the only one who has presented with it. I was adopted at birth and always wondered if anyone in my birth family had it too. I was able to find my birth mom approximately 15 years ago, and again, I am the only one on her side of the family with this condition. She doesn’t know about my birth Father’s side, but I believe I may have tracked down a family member for him and I’m just waiting to see if she contacts me. His name is Arvay Bernath and he was born and raised in Nanoose Bay, BC on Vancouver Island. He dated my mom Bonnie Rebecca Anderson from Parksville, BC on the Island and they were engaged when she became pregnant with me. Her dad didn’t approve and so they broke up and I was put up for adoption. Arvay appears to have passed away in 1997, but from information, I found on MyHeritage.com there is a relative named Lily Bernath who started a search page. I left her my contact info, but she hadn’t been on the page since 2017, so who knows if she’ll get my info or not. At any rate, he or his family may or may not have Brachydactyly too, or I could just be an anomaly.
So, what else is on that list. Ah yes, the ever lovely Gastroparesis, which means (again according to Wikipedia):
Gastroparesis (GP also called delayed gastric emptying) is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Normally, the stomach contracts to move food down into the small intestine for additional digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract.
Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.
On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.
The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!
The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked Dr Leong if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try and exercise a bit more.
Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired
Oohhh, that is NOT a good look on me!!! Dr Leong put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!
The other few things on the list are all fairly minor. I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone. The High Cholesterol is managed easily with medication (too much ice cream!). The Reynauds is something that happens when my fingers and toes are exposed to the cold…they go bone white and lose sensation, so I have to be careful when getting things from the freezer or being in cooler windy weather, etc.
So there you have it. Thirteen separate conditions with one healed and Chronic Pain is a part of 7 of them. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. I’m going to do a separate blog post about my Fibromyalgia because that’s been my predominant pain for so many years, but suffice to say that you have to be mighty strong to live like this, to get through the day to day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.
I’m a huge advocate for assisted suicide for people who live with severe, unretractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I wish our Government would get on board with this. I know things are happening, and we’re getting closer, but it’s not well within reach for everyone.
Thanks for indulging me and letting me share more about me with you. If you have any questions or comments, please feel free to leave them here. And remember…
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!!!!
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……”
WARNING – INTIMATE DETAILS/PICTURES TO FOLLOW
I talk a lot about my health issues on this blog because that’s a huge part of my life….the various health issues I live with. I thought up until recently that things were going pretty well – my hip was recovering well from the replacement surgery, and even though I’d developed some issues with the Achilles tendon on my left ankle/foot, and my knee was still being a bitch on the right side, overall, things weren’t getting worse with my body. So when I found the mole in the Lady Garden, there was that instant sensation of “oh crap…this isn’t good”….and I was right.
Readers, before I go any further, I want to warn you that I’m going to be talking about intimate parts of my body. I will use euphemisms as well as proper body terms, and I am going to be laying things on the line. If this makes you squeamish, then STOP NOW. Go on over to Jenny Lawson’s blog and have a few laughs instead. None of this is easy for me, but I think it’s important to share this and to be honest, because if it happened to me, it could happen to anyone and I’m a firm believer in education when possible. Okay? Good. Let’s get started.
Now, I know every lady has their own preference for how they like to maintain “the Lady Garden”. I prefer to keep mine trimmed fairly short, but it generally grows quite long before I do anything. Then I have to trim with scissors before using a beard shaver to get it to the length I like. Ray doesn’t care one way or the other and in fact, probably prefers it longer than I do. I just can’t stand an overgrown jungle. It gets caught in my panties, it pinches and pulls and I worry about freshness and smelling good. So, I trim fairly short. Right before I had my hip replacement done, I did an extremely short cut because I knew I wasn’t going to be able to physically manage to do it again for a few months. When I finally WAS able to trim again, I was certain a parade of jungle animals would come sauntering out, the bush was so thick!!!!
It was early July when I set forth on this task and after using the beard shaver to get things to a more manageable level, I noticed THE MOLE (dun dun DUN!!!) for the first time. It hadn’t been there in February, so in only 5 months, it had developed and grown to a size slightly larger than a pencil eraser. It was pebbly on the top and when I scratched at it, not realizing it was a mole at first, it started to bleed along the edge. My heart jumped into my throat and my hands started shaking. This was NO place for a mole, and I am covered with them….moles, beauty spots, brownie kisses, whatever you want to call them. I’ve had several removed over the years, from my neck and my arms, and one lump from my face that turned out to be nothing of concern, but looking at THE MOLE, I knew immediately it was something to worry about, if only because of the location and it’s quick appearance.
I phoned my family doctor immediately to make an appointment and on July 10th, I saw Dr. Leong. When he came into the examining room, we shook hands as always, and then I said to him, “okay, this is how things are going to go. I have a mole. You’re going to look at THE MOLE, tell me I’m an idiot for worrying and send me home”. I could feel my voice quiver and I saw his look of concern. He knows that I know my body well, and if I was worried, then there was definitely a reason to worry. He looked carefully at THE MOLE, using bright light, touching it and moving it and saw it start to bleed a bit. I could see the expression on his face change and when he was finished examining me and helped me sit up, he said to me “well, I can’t call you an idiot, but I don’t think it’s anything too serious. I’ll remove it and we’ll send it to pathology, but I don’t think you need to worry”.
Ah, the relief!!! I love Dr. Leong…he’s honest and straightforward and I know I can trust him. So we made a follow-up appointment to have THE MOLE removed and I left there a happy girl. Now let’s zip forward to July 27th – the day Dr. Leong removed THE MOLE. It was a super easy process…Ray came with me into the room. Dr. Leong froze the area around THE MOLE with local freezing, then did an incision about a half inch around THE MOLE, stitched me up with just a few stitches and we were done in about 20 minutes. I felt nothing and there was no pain afterward…it was perfect. He told me he’d call me with the results from Pathology but didn’t expect there to be a problem and sent me on my way.
And then I got the phone call a few days later, asking me to come into his office. It was too soon for the stitches to come out, and there was no way he was asking me to come in just to say everything was fine. Dr. Leong knows that I take the bus to get to his office and that it’s a 45-minute ride for me, so I knew the results meant there was a problem. When I arrived, the two gals at the front desk, whom I’m friendly with, where both SUPER friendly…like, way beyond normal, so that made me even more suspicious. And sure enough, when Dr. Leong came into the examination room, he handed me the Pathology report and the result was something called Vulvar Intraepithelial Neoplasia 3 – or VIN 3 – which is basically as close to cancer as you can get without it being cancer.
Dr. Leong told me he would have to refer me to a Gynocologist for further surgery because the pre-cancerous cells were still showing up on the edges of the removal that he had done. A bigger, wider removal would have to be done, to make sure that ALL the pre-cancerous cells were gone. I sat there for a moment, absolutely gobsmacked. Like, seriously? Do I not have enough crap going on in my life already? I just looked at him and shook my head and he patted me on the shoulder. He said “I know…it’s not what either of us was hoping for. Do you want me to write you a prescription for something for stress or do you think you’ll be okay?” I told him I’d be fine, folded the pathology report into my purse and left the office, still trying to process everything.
Once I got home, I sent Ray a note giving him a brief overview, and then posted an update on Facebook, so that everyone who had been sending me love and support was up to date. A few days later, I received an appointment date of October 5th to meet the Gynecologist who would be doing the wide excision surgery, Dr. Sherri Hancock. In the meantime, I was busy with several Patient Voices Network engagements, including the speech I gave at the Information Governance Conference, which certainly helped to keep my mind occupied. I knew that otherwise, I’d be running to Dr. Google constantly, trying to find everything single thing I could about this condition, called Vulvar Intraepithelial Neoplasia 3. Finally, Oct. 5th came and I met with Dr. Hancock. She was very nice, easy to talk to and gave me a good overview of what the surgery would entail.
Because of the size and type of incision that’s made and the area that this was located (right at the edge of the pubic area, approximately 1 inch from the clitoris), the surgery is done under either a general anesthetic or a spinal and sedation. I initially chose the spinal because it worked so well for my hip replacement, but when I met with the Anesthetist prior to surgery, we decided that a general was better because the surgery was only about 40 minutes long at the very most. She told me that I would most likely be given a surgery date in late October or early November and sure enough, I got the call that November 6th would be the day. I also received all the information on the dates for Pre-op appointments with Anesthesiology and to get Lab work done.
One lovely thing that happened in the middle of all this stress, and all the appointments, etc. is that Ray’s mom Lorna came to visit us for a few days! She stayed in Edmonton first to visit Ray’s sister Rhonda and her family – husband Tom, son James and daughter Paris. Then she came to Victoria to stay with us from October 12th to the 17th. I tried to conserve my energy as much as possible so we could spend as much time together as possible. We went to the Butchart Gardens which was lovely…Ray insisted I use my wheelchair so I wouldn’t exhaust myself and I have to admit, it really is the only way I can do the Gardens now. Unfortunately, at the very end of our time there, literally, as we were leaving, Lorna stumbled on the edge of one of the garden planters and fell almost face first, leaving her with a nasty nose bleed and quite a big bruise on her nose and under her eyes. It’s likely she broke her nose, but she didn’t want to have it checked. She had been suffering from a cold, so the nosebleed sure wasn’t helping!! She’s a tough bird, I’ll tell you. There were people around her to help right away…we were ahead of her and didn’t see it happen, and the First Aid attendants from the Gardens were excellent (plus Ray is a trained First Responder). We spent about 30 minutes in the First Aid room there while her nose continued bleeding until she finally felt ready to leave. And then when we did leave, I had Ray drop ME off at the ER, as I’d been dealing with wrist pain all day, after scooping up a bowl of ice cream in the wee hours the night before. I heard a “pop” and felt a horrid pain shoot through my wrist, right where the knobby bone is (on the right wrist), and it was still a bit swollen and painful to the touch. I felt like an idiot when they were filling out the forms and I put down “scooping ice cream” as the reason for the injury. I was doing it on the patient side of the floor, not the waiting room side, so lots of people heard me and were laughing…me too. When I finally saw the Dr. there, he asked me “which ice cream place do you work at?”, thinking I did this for a living. I said, “no, no…this was just me at home”. And as soon as I said that, I could see him start to snicker. I couldn’t help but laugh again…it really was a stupid way to get hurt.
Anyway, he sent me to x-ray, and then another Dr. showed me the results – it came back fine, and this Dr. said it was probably just the ligament popping over the bone, which can really hurt but causes no harm. He sent me on my way and as I was leaving, the first Dr. leaned out into the hallway and said, loud enough for everyone to hear “take it easy on the ice cream Sweet Stuff”. Lots of people were laughing, because they all knew about the scooping…man oh man…I don’t embarrass easy, but I’m sure I had a red face!!!
So…Ray came and picked me up…I came home to rest and relax and that’s exactly what Lorna was doing too. She said her nose wasn’t hurting too much and that the bleeding had finally stopped, so that was good. It was such a shame to end the day like that but I’m glad it was at the end of the day, not the beginning!! The rest of her visit was quite quiet…she and I always have lots to talk about, so while Ray was at work, that’s what we did…we talked, we read, and in general, just enjoyed each other’s company. I love my mother-in-law so much and really miss her. She used to live closer to us, but now is in Ontario, and this was likely her last trip out West. We’ll have to do the traveling to see her from now on. We’ve always gotten along well, and she’s always made me feel like part of the family from the very beginning.
So, things moved along pretty fast after her visit and before I knew it, November 6th was here and it was surgery time:
Does she survive Surgery??? Does the Lady Garden live to have another trimming???
I’m posting this now, and part 2 will continue shortly…so I guess at least one answer is yes. Thanks for reading so far!! I know a lot of you have already read all about this from my Facebook posts, but I still appreciate those of you who are following along!
Remember…there is always hope!