I’m 57, I’ve been disabled since I was 18, I was also a housewife/mother, nest now empty. I am a writer, & a photographer.
Chronic illness(es)/disabilities I have…
Arthritis, chronic fatigue syndrome, fibromyalgia, and a mild Traumatic Brain Injury
My symptoms/condition began…
I was diagnosed with arthritis when I was 18 (1979), chronic fatigue when I was 29 (early 1991), fibromyalgia in 1995 & the traumatic brain injury is from a car accident in 2007
My diagnosis process was…
I went to the Pine clinic in Kitsilano when I was 18, they referred me to Dr. Art Hister, he diagnosed me with arthritis. I was diagnosed with chronic fatigue in 1995, by my then Dr. She referred me to a rheumatologist who diagnosed me with fibro, in 1995. I was diagnosed with the traumatic brain injury in 2008, after I requested a referral to a neurologist.
The hardest part of living with my illness/disabilities is…
Dealing with all my limitations is frustrating & also being in so much pain.
A typical day for me involves…
I wake up, take my medication & go back to bed for at least 1/2 an hour. I don’t go out much anymore, as walking is a huge problem & since I am not on full disability yet, I don’t have a bus pass. I try & do housework & dishes, as energy & pain allows. Luckily I live in a seniors (55+) building, so I have some light housekeeping every 2 weeks.
The one thing I cannot live without is…
Since they don’t want to give me stronger painkillers, I’d have to say my medical marijuana.Second would be the internet, I use it to watch TV since I don’t have cable. And I have a VOIP phone, as well.
Being ill/disabled has taught me…
Be kind. Everyone is fighting a battle that no one else knows about.
What advice would I give someone recently diagnosed…
Learn all you can, be your own advocate & never hesitate to ask for a 2nd opinion, everybody makes mistakes. Don’t hesitate to ask for help when you need it.
My support system is…
My husband. My mom & my brother. And the friends I have made online.
If I had one day symptom/disability-free I would…
Jump my husband & go white water rafting.
One positive of having a chronic illness/disability is…
Since we are both disabled, my husband & I get to spend a lot of time together, which is wonderful.
Our Interview October series continues with our next guest, Jenni Lock. Let’s meet her now:
Introduce yourself and tell us a bit about you…
My name is Jenni Lock. I’m 43 years old and hail from Ohio. I created Jenni’s Guts blog in 2008 and write about my journey with intestinal nonsense and other health issues. My sense of humor and sarcasm are all part of my charm. I have a deep love for animals, learning about everything, socializing from a far, and my beautiful daughter.
Chronic illness(es)/disabilities I have…
Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea mainly. However, I also suffer from Fibromyalgia, Anxiety, Depression, Insomnia and struggle with a touch of PTSD.
My symptoms/condition began…
I started having health problems in roughly 1990, though I wasn’t officially diagnosed with Crohn’s until 1995. Everything else wrong with me just snowballed over the years after that.
My diagnosis process was…
Difficult. I suffered from a lot of stomach pain, back pain, joint pain and lost about 15 pounds due to running to the restroom about 15-20 times a day. My family doctor told me I was depressed and needed Prozac. That didn’t help so I went to a specialist. The specialist told me I had Irritable Bowel Syndrome and needed to eat more fiber and scheduled me for a sigmoidoscopy, but everything came back normal so I was, again, told to eat more fiber and decrease my stress. I quickly found out fiber made things worse and I continued to get sicker and sicker. I went to a different specialist who did many more tests but everything came back normal except for one blood test. It showed an inflammation/infection rate of seven times the normal rate. I exhausted all the testing options so I was scheduled for surgery to figure out what was happening inside me. During surgery they found I had about 3 1/2 feet of severely inflamed small intestine and the final diagnosis was Crohn’s disease. The whole diagnosis process took about 2 years.
The hardest part of living with my illness/disabilities is…
My inability to do things with my family and friends because of being tied to a restroom and not feeling well enough. Especially not being able to travel and go to fun events. I’m not able to do a lot of things with my daughter because of this and it is really hard for me to continually have to say, “No, I’m sorry but I’m too sick” or “I can’t because of the bathroom situation.”
A typical day for me involves…
After an exhausting night of not sleeping well, or even at all, the mornings are usually met with many trips to the restroom which continues throughout the day but most of the time tapers off at least a little throughout the day. I watch a lot of movies and television, read and research, or put on music and draw. I’m unable to work so I mainly just try to keep myself from going stir crazy.
The one thing I cannot live without is…
Being ill/disabled has taught me…
I can be a person with a disability (or many actually) but it doesn’t define who I am. I’m so much more than just someone with medical problems. And it has taken struggling with so many things wrong with me to actually figure that out.
What advice would I give someone recently diagnosed…
This diagnosis isn’t the end of you. Study and learn as much as you can about your illness from every source you can get your hands on (except WebMD!!). You have an inner strength that you never knew you had so use it to fight for proper health care and proper treatments and don’t ever, EVER settle for less – not from your doctors, healthcare professionals, or anyone else. You’re worth it!
My support system is…
My family and friends. And a furry little friend or two always make things better! (Shoutout to all the pets I have had along the way – I miss you guys!)
If I had one day symptom/disability-free I would…
Grab my daughter, get in the car and just drive. We would go to all the places she always wanted to go and do all the things she wanted to do that I couldn’t because traveling, for me, is so difficult.
One positive of having a chronic illness/disability is…
All the communities out there that have allowed me the opportunity to meet people and learn about their stories. I’m so fortunate that my blog has reached so many people and we all get to help each other cope. I think it is so important to have a community of people who understand, even if they are hundreds of miles away from you and you never physically meet each other.
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…
I’m doing a tribute today to an amazing woman named Jenny Lawson. You may have heard of her. She’s an incredible writer and the author of the books “Let’s Pretend This Never Happened”, “Furiously Happy” & “You Are Here”.
She writes about her own struggles with depression and man, can she write!!! Her sense of humour is incredibly warped and twisted (just the way I like it), she blogs as The Bloggess (thebloggess.com) and there are several Facebook fan groups as well, one of which I belong to. We are her Tribe. We get her. We understand what she goes through and experiences, and even if some of us don’t live with depression, most of us know someone who does. For me, it’s my husband.
I wrote this piece one day when I was feeling overwhelmingly happy that I had found this particular Tribe to call my own. Here goes:
I live with several health issues that leave me in constant chronic pain: Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, Chronic Fatigue Syndrome, Forestier’s Disease, Trigeminal Neuralgia, Diabetes Type 2 (on insulin) and Bipolar Disorder. I had Total Hip Replacement on Feb. 7/17 (with my left hip needing to be done as well and possible knee surgery on my right knee later on) and am having a good recovery. I am still in pain, and always will be.
I used to think that my “furiously happy” would come when I no longer lived in pain. Its only been in the last year or so that I’ve come to realize that will never happen. I will NEVER be without pain…that’s just the nature of my body. And when I realized that there would always be the pain, I thought at first “then I will never truly be happy”. I have an amazing husband, whom I love beyond measure. I have 2 grown up kids that I still worry about and three grandsons that I never get to see because of distance. We keep in touch though with social media, and that’s a good thing, but it’s far from being furiously happy.
Because of my health, I had to give up a career that I adored…Admin Support at the Executive level as well as being a Certified Event Planner. I loved my job with every fibre of my being, but came to a point where I physically couldn’t manage it any longer, and with my chronic fatigue, would never be able to manage again. Everything in my life seemed to be about loss…losing a job, losing my hobbies, losing professional relationships, losing friendships, losing mobility, losing at life.
Hubby and I decided in 2013 to make a move to Vancouver Island from Calgary after the weather in Calgary became too much for my body to handle…too cold, too much snow, too long of winters, too icy…too, too, too. We moved here without a job for Ray or even knowing what our apartment looked like – we rented it sight unseen. Slowly, we started making Victoria our home – walking by the ocean, going for coffee or dinner at various places. I soon realized how much I loved it here, even though there were really no friends to share it with (two couples and one girlfriend and that was all that I knew – and even then we rarely saw each other).
One day, I found the Jenny Lawson book Furiously Happy. I have never laughed so hard in my life. I gave the book to Hubby to read and HE has never laughed so much…and he’s not one to show much emotion ever, good or bad. But he laughed and often. From there, I found her website and her other book and then all of sudden, there was THIS group. People like me. People who were struggling and depressed and suffering mentally and physically and I thought to myself “God, thank you for bringing me home”.
Because I realized quickly that I seemed to be good at encouraging other people in their struggles, so I didn’t have to think about mine. I could offer advice or words of comfort, or just the right kitten picture and something would change for the good in that other life. And MY life felt better because of it.
And then I knew, the way that I became Furiously Happy was by being myself and sharing my life with those of you here who needed what I had to offer…a shoulder to cry on, a hug, some understanding, appreciation…whatever you want to call it. I became Furiously Happy because OF Furiously Happy. And now I have my Hubby and my family and my friends and my volunteering AND MY TRIBE!!
Now, the reason I’m giving a shout out to Jenny today is that she has been undergoing a new treatment for her depression called Transcranial magnetic stimulation (TMS). It’s described like this: (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.
Jenny started treatment 2 weeks ago…and people…IT’S WORKING!!!!!
I want you to go to her blog and read all about it. If you know anyone who is experiencing major depression in their lives and no other treatment has worked, then this MIGHT be an answer for them too. I admire this woman so much, and I’m so delighted that this is working for her, I simply had to share. Please go check it out, buy her books (you will laugh, trust me) and find your tribe if you haven’t already.
If you live with Chronic Pain, Chronic Fatigue, Fibromyalgia, or Invisible Illness of any kind, you can’t go through it alone. You need to find a support group. If you look me up on Facebook, I can introduce you to the Fibro group I belong to. We support everyone who is in pain. And if you’re a fan of Jenny Lawson and want to join the group on Facebook I belong to, use the contact page on the blog here, and let me know.
I belong to an online Fibromyalgia Support Group. I spend so much time on the computer that it made sense to me to find a support group online as well. It’s run by a lady named Catherine and has members from around the world – Australia, England, Canada, and the USA.
It’s a super supportive atmosphere and the one thing we are very clear about is that none of us are doctors and we are not there to dispense medical advice. We can talk about what does and doesn’t work for us, and our own medical experiences, but we can’t diagnose you based on YOUR symptoms, as Fibromyalgia can have SO many symptoms, it would be impossible to try.
One of the so-called “tests” used to determine if you have Fibro or not is the 18 Tender Points as shown here:
And for those of you unfamiliar with Fibro and all its many symptoms, this diagram might help you see how insidious this disease really is:
And here are some overall averages taken from a US study of percentages of people who experience these symptoms:
So you can see why Support Groups are so necessary when you live with Fibro, or really any disease that causes Chronic Pain, such as Osteoarthritis, Rheumatoid Arthritis, Lupus, Ehlers Danlos Syndrome, MS and more.
Well, I joined a new Fibro support group a few days ago, and just had the most interesting experience. Yesterday, the Leader of the group “diagnosed” a member with a symptom she was experiencing (bloating and constipation) and told her she had “Leaky Gut”. I suggested that she shouldn’t diagnose, and what if it was something else, such as Gastroparesis?
My goodness, did I ever get a pissy response!!!! I took screenshots (which I won’t post here), but I ended up just leaving the group. I was told that this woman has 25 years of living with Fibro, she’s done years of research with top doctors, and she knows what she’s talking about. Apparently, this woman is determined that the only way to resolve Fibro is with Bovine Colostrum and a Chiropractor. Now, I’m willing to try the Bovine Colostrum to see if it helps, but you DON’T diagnose someone definitively, EVER. It’s even in her rules, which I quoted to her, which made her even angrier!!
And not only that, how dare I suggest Gastroparesis and the radioactive tracer test that would diagnose that because that would make this lady’s “Leaky Gut” even worse. FACEPALM (yes, she really put the Face Palm Emoji in there).
And not only THAT, how dare I tell her what to do in her OWN GROUP. She’s never been angry before, I’m the first one in the whole ten months to upset her, blah blah blah blah blah blah (yes, I am that talented!!)
So, I told her I was leaving the group because I obviously couldn’t state my opinion without being attacked, she couldn’t follow her own rules, and I don’t need that kind of energy in my life. I reiterated that it’s okay to suggest possibilities, yes, but you never tell a person that what you suspect they have IS what they have. That’s just being irresponsible. Then I called her an @ss and left. Oops!!
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.
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……”
Welcome back Dear Readers! Once again, I apologize for letting so much time go by since the last post, but there’s been a lot happening in my life and unfortunately, the Blog tends to take a back seat to everything else. I hope to do better going forward, but for now, it’s time to get caught up on everything that’s happened since I last entertained you.
To get started, let’s take a break from health issues for a little bit and talk about something else that’s a huge part of my life – volunteering! I’ve been an active volunteer in various capacities starting when I was a kid in Brownies and Guides, and then again during most of my working years, especially the years I spent working at Bell. Bell was a major sponsor at the Calgary Stampede, and for those ten crazy days each year that I worked for the company (2003 to 2007), I would go to work at the office for my regular hours (8am to 4pm), then head over to the Stampede Grounds and to the Bell Xperience Tent, where I would pass out flyers at the front from 4:30pm until 10pm or so – whenever we closed. I would dance at the front entrance, make all sorts of new friends and just have a ton of fun!! I even had the opportunity to take a ride in the Bell Lightship as Hostess to the winners of an employee contest to visit Stampede – and they let me bring Ray along as well!!
There were a lot of other volunteer activities I was a part of during my working days, including the Calgary Corporate Challenge, Habitat For Humanity, and Blood Donation Drives.
After leaving work and going on Long Term Disability, I wasn’t sure how I could make volunteering a part of my life any longer. I mean, I couldn’t get through my days without needing to nap, I had no energy, no ability to converse with others without losing my train of thought halfway through a sentence – I was deep in depression and as much as I wanted to continue to give back, I simply didn’t have anything left in me TO give. So…volunteering was pushed to the back and left there, forgotten. I worked hard on trying to improve my health physically and mentally over the next several years, working with various Doctors and medical personnel to try and fix everything that was wrong with me. The list is quite long unfortunately and most of what’s on it is “unfixable” – I can find ways to help me feel better, but the issue in question is never going to go away.
I did start to feel better in many ways and came to a point where I felt I was able to volunteer again, but I wasn’t sure in what capacity. Most of what I had done before had been quite physical and I knew that wasn’t going to work for me now, so I had to be realistic about my new abilities. I came across an advertisement about Patient Voices Network and immediately knew this was the fit I was waiting for. The concept that I, an everyday, average British Columbian, could have an impact on how healthcare was delivered, completely knocked my socks off…I signed up on the spot!
I went through the orientation class and immediately began registering for various engagements that appealed to me. In the four years, I’ve been a member of PVN, I’ve had involvement in the following opportunities:
Attending the 2014 BC Provincial Dialogue and having my thoughts printed in the PVN Voices of Change | Spring 2014
Island Health CSAE PDSA Progress Sharing Update – Island Health – 2014
Judge – Quality Awards 2016
The ERAS Project (Enhanced Recovery After Surgery) – including the creation of a video – 2016. (I was also nominated by my peers for an award at the 2017 Quality Awards for my work on this engagement.)
Member of the Medical Imaging Quality Council – Island Health – 2016 for one year
Member of the Patient Advisory Committee for the Update of the Canadian Guidelines for Safe and Effective Use of Opioids – 2016-2017
Member of the Planning Committee – Quality Awards – 2017
Information Governance Conference -Sept. 24/17 (opened the Conference by speaking to 175 people)
Judge – Quality Awards 2018 – Completed
PVN – Co-Chair of the Information & Advisory Committee (2017 to 2018)
Involved in a research project with Dr. Morgan Price. The project is looking into Medication Adherence – highlighting motivators and barriers to adherence
Patient Speaker – Board Governance Training Program (January 25/2018)
The best part is, I can pick and choose what I want to do, based on how I’m feeling. Most of these committees meet once every two months via teleconference, and occasionally, there is a face to face meeting held in Vancouver which is always a treat. Expenses are covered and I get a chance to visit my daughter Ashley on those trips, usually for lunch on my day of departure.
My last trip to Vancouver was just such an occasion. I was invited to give a speech to a group of approximately 175 people, on the topic of Information Governance and why it’s so important that our Health Records be available in all Health Regions in BC, not just the Region you live in. I didn’t realize that was the situation here and spoke on the scenario of what would happen if you had an emergency in an area outside of your home Health Region. Here is the Video of my speech – it was well received and I had many people come up to me throughout the day to tell me what an impact it had made on them and how important they thought it was to open the day like that. I hope you enjoy:
CLICK HERE TO WATCH THE SPEECH
I don’t have a lot of experience speaking in front of large crowds, but because I’ve sung in my barbershop chorus and quartet in my last life, I think it’s made it easier to talk to a big group. I wasn’t nervous at all and I even when I found out it was being videotaped, I didn’t get scared. I think there will be more opportunities for me to speak in the future, so I’ve been going over this one to see what kind of changes need to be made (not sure where that tic noise is coming from, but it’s got to go!)
Anyway, it was a great meeting with great feedback and that’s what I was hoping for. Later that day, I had to excuse myself to return to my hotel room for a conference call with the BC Patient Safety & Quality Council’s Oversight & Advisory Council. It was our first meeting together since I was accepted to the Council along with the other new folks, and yes, this keener was already applying to be the Co-Chair before the meeting was even over (which I ended up getting!). It’s going to be great being a part of this group…we basically guide the activities of the Patient Voices Network, so I’m super excited for the year ahead!!
Remember…there is always hope!
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!
Thanks for sticking with me on this adventure. If you’ve been following along, surgery is set for Feb. 7th for my Total Hip Replacement (THR) of my right hip. This has been needed since 2010, because of arthritis and because of something called Femoral Acetabular Impingement. The link takes you to some great information about why I’m having this surgery done – one of the other things I experience besides pain is the constant noise of my hip snapping, popping, clicking, etc. when I walk or move. You wouldn’t think it would be a big deal, but when you have to listen to it 24/7 for years, trust me…it’s a BIG DEAL!.
So, now that you know WHY I’m having surgery, let me tell you about some of the tests I’ve had done, including the surprise tests that happened, and then I’ll tell you about my surgeon, Dr. R. Stephen Burnett.
For any surgery, you have to undergo regular tests to make sure you’re healthy – blood work for various investigations (checking for infections, etc), an EKG to make sure your heart is functioning properly, a chest x-ray to make sure there is no pneumonia forming – those are the basics. The doctors like to have them within 3 months of the surgery date, so I actually had to have them redone. No big deal. Because I have Type 2 Diabetes, they also check my A1C blood sugar levels – an average of my blood sugar levels over a 3 month period. You generally want those to be under 6 and mine this time around were 6.2 which is pretty good. I use insulin to manage my Diabetes, injecting 14 units of it every night into my stomach or upper thighs on a rotational system. I admit, I often let my Diabetes take a back seat to all my other health issues, and I often forget to check my blood sugar levels on a regular basis, but overall, I’m keeping it under control, so that’s a good thing.
Now, in addition to these regular tests, I had a phone call from Dr. Burnett’s office, telling me they had set up a Bone Scan and CT Scan for me for Monday, Jan. 30th and that Dr. Burnett would want to see me to discuss the results of these tests prior to surgery. The only day he is available to see me? The day before surgery. Instantly, my stomach goes haywire and my brain goes into overload and I’m thinking “he’s going to cancel the surgery!!”. I mean, I have no real reason to think this…it’s just more tests and there hasn’t been a recent bone scan or CT, but because I’ve waited so long for this, I’m wired to believe it’s not going to happen, because I was led to believe it was going to happen 6 years ago in Calgary, and it didn’t. There’s still a tiny part of me that is waiting for someone to say “oh, sorry…no can do…dreadfully grieved…move along now”.
Anyway, fine…I send a note to his nurse Angela, to see if she can find out why he’s doing these tests and is it going to impact the surgery, and her first response back is that she doesn’t see anything on his notes but she’ll try to snag him to ask him and get back to me in a day or so.
So on Monday, I went for the tests, still with no answers. The bone scan is a two-part test…in part one, you get an injection of a nuclear tracker that spreads throughout your body and several pictures are taken in a special type of scanning machine. After that, you’re allowed to leave for a few hours, to give the tracker time to spread throughout your body. You arrive back at your appointed time and undergo a series of pictures – I think it took about 10 minutes for mine to be done. The CT scan is straightforward – there was no contrast used in my test, so no IV and no medicine that makes you feel flushed and like you’ve pee’d yourself. If you’ve ever had that medicine before, you know exactly what I’m talking about. All in all, the actual tests took about an hour – it’s the waiting in between for the nuclear tracker to spread that took up the most time. You can leave while you wait, but I live too far away and take the bus into town, so I just hung out at the hospital, ate lunch, drank my requisite 2 bottles of water, and played games on my phone.
On Tuesday, I heard back from Angela, saying she had received the results and passed them on to Dr. Burnett and also confirmed he was still going ahead with my surgery. PRAISE GOD!!! I have never been so relieved in all my life!!!! I couldn’t wait to text Ray and my kids and my dear friend Charlotte, as well as share the news on Facebook. I simply could not stop grinning!!!! This is really going to happen!!!
Now, a few words about my surgeon. Dr. R. Stephen Burnett.
I met him for the first time just a couple of weeks ago (remember, this was before the bone scan and CT scan) and thankfully had been warned that he didn’t have the best bedside manner. He introduced himself to me, I introduced Ray, and then he proceeded to share with me that my lab work looked good, so we were good to do. He told me that he preferred to use the ceramic head rather than the metal one that BC Health covers the cost for, so it’s a charge of $746.00 that I have to pay out of pocket, but it’s superior in function and long-term usage. He asked if I had any questions, which I did, and that was that. Ray and I arrived 30 minutes early for the appointment, waited another 30 minutes to see the man and we were done in 5 minutes.
He’s very much an “all business” surgeon, so it’s a good thing I wasn’t looking for the hand holding type. I did expect him to be more talkative (he wasn’t) and to share more information (he didn’t), especially about the artificial hip itself. He didn’t have my full file with him…he didn’t even realize how quickly my surgery was coming up!!! That being said, I’ve also heard from several sources that he is the absolute best in the business when it comes to hip surgery, especially with more complex cases, so I’m going with what a friend of mine said – I want a surgeon who’s all business and a Family Doctor who is more personable and hands on. He wasn’t rude, or anything like that…just not quite what I was expecting.
So, I will see him this coming Monday, Feb. 6th to discuss the results of the bone scan and CT scan. I did see my family doctor already this week though to get the results and to discuss any last minute issues regarding the surgery and things like my medications and when to take them on the morning of the 7th, etc. Dr. Leong has been my Family Dr. for 3 years now and truly is the hands-on, caring Family Dr. so I was glad to have the chance to see him once more. He took the time to go over the test results with me, so if Dr. Burnett doesn’t go through them as thoroughly, I at least know what’s happening. And what is happening you might ask? Well, thanks for asking. 😉
What the tests showed is that in addition to the hip impingement we know about and arthritis we know about, I apparently also have severe arthritis in the lower lumbar spine which is the cause of my lower back pain. Now, keep in mind that I have bone spurs up and down my Thoracic spine and now we find out the lumbar spine is a mess – basically what the Doctors want me to be aware of is that after the hip surgery, if I still have pain, not to feel like this was a failure…it just means that we need to follow up on the back problems and start treating them. Oh yes my friends…with me, the fun never stops!!!
So, what’s next? Well, the last thing before surgery is what’s called “The Prep”. On Monday night, I take a shower, using a special sponge called an Antibacterial Chlorhexidine 4% sponge. Everything gets scrubbed from top to bottom, then a clean towel is used and clean pajamas are put on and the bed is made with clean sheets. Nothing to eat after midnight, and nothing but clear liquids to drink until 3 hours prior to my arrival time of 6am at the Hospital – and that includes black coffee!!! Yay!!! In the morning, I repeat the shower, using a different clean towel to dry off – put on loose comfortable clean clothes and shoes that are easy to get on/off and then we head to the Hospital for 6am. I am the first scheduled surgery of the day, which is fantastic – unless there has been an emergency that’s come in the night before, everything should run on time.
Once I’ve been admitted, I’ll be taken to my bed where I’ll be asked to change into a gown. At some point, required paperwork will be filled out, an IV will be started and things will start to move too quickly. Ray and I will be able to be together until it’s time to move to the pre-op area – but he actually has an appointment at the Hospital that morning for some Volunteer work he’s doing so he might need to leave before then anyway. Then, it’s off to the OR!!! I will be having a Spinal Anesthetic instead of a General, so that will be administered. I’m opting for as little sedative as possible…I’d actually love it if there was a mirror where I could watch them replace my hip, but since I doubt that’s possible (and since they’ll take my glasses away and I’ll be blind as a bat anyway), I’ll just stick to listening. Once the surgery is over, it’s off to recovery and then eventually, my room. I’m hoping I’ll only have to stay for a couple of days and I’m praying that the surgery won’t cause a Fibromyalgia flare-up or a flare-up of my Trigeminal Neuralgia. I won’t get my hopes up…every surgery I’ve ever had has made my Fibro flare, to the point that I felt like a semi truck had run me over and dragged me a hundred feet. I didn’t have the TN back then, thank God!
So my friends…that is what the next steps look like. I will post a very short note on Monday night, and then again as soon as I can when I’m up to it later. In the meantime, remember the motto:
ps: Geez, I almost forgot this part….on Thursday, when I was seeing my Family Dr., my cell phone buzzed (it was on mute) and when I checked the messages, there was one from Dr. Burnett’s nurse, asking if we had somehow forgotten to send her a copy of the invoice for when we paid for the ceramic head that he’s using. Yeah…the one that WE FORGOT TO PAY FOR!!!!! Oh, my word…I couldn’t believe that we had forgotten to pay for the damn thing…I could just see it in my head….me on the operating table and the good doctor holding it in his hand, waving it at me, saying “would you like this???? It’s going to cost you!!!!!!!”
I paid for it on Friday. In person. At the hospital. And I took pictures of the invoice, marked paid and sent them to the nurse. WHEW!!!!!!!!
Remember, there is always hope!