Why I Blog (About Fibromyalgia, Chronic Pain and Invisible Illness)

I have been blogging for a couple of years now and recently someone asked me “why do you blog? What do you get out of it?”

It was a good question, so I thought I’d write a post about my reasons for blogging and what I hope to achieve with this blog site

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Image by TeroVesalainen from Pixabay

Education

When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury. 

Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life. 

Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more. 

The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same. 

Compassion

Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert. 

In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.

My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood. 

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Image by Gerd Altmann from Pixabay

Volunteering

In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others. 

Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better. 

My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be. 

These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul. 

 

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Image by John Hain from Pixabay

Helping Myself

My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill. 

I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.

If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from. 

Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form. 

I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…

There Is Always Hope

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Refresher Course

I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • Hypothyroidism

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.

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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.

My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.

My Trigeminal Neuralgia is something I’ve talked about before so you can read the article about it here.  The same goes for my Bipolar Disorder.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis

what-is-gastroparesis

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 to having to feel better in order 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 my doctor 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 to exercise a bit more.

The Internal Pelvic pain is because 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.

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

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Oohhh, that is NOT a good look on me!!! My doctor 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!!

So there you have it. 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. Suffice it 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, intractable 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’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.

One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.

I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.

Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.

So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…

There is always hope

Ending The Year

It’s December 29th and the year is drawing to a close. I want to take this time to simply recap the year and say thank you to my Dear Readers for spending your time with me in 2018.

From the beginning of the year, when I really got started blogging, I started out by writing Happy New Year .  My main theme at that time was to talk about my hip replacement surgery which was the real reason this blog came into existance. I had been searching for personal stories of “younger” women who had undergone hip replacements but hadn’t found much, so I thought I’d share my story for others who might find it helpful for themselves. One thing led to another and before I knew it, I was writing about my other health issues, including Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses.

I’ve had the opportunity to share my thoughts about body image, intimacy when you live with Chronic Pain, the sleeplessness that comes with Fibromyalgia and Invisible Illnesss, and how the simple loss of bathing can mean so much heartache. On the other hand, I’ve been able to share about gratitude and finding joy on more than one occasion, so I’ve tried to focus on the positives as much as possible, whenever possible.

I couldn’t do this without you. Without my Dear Readers, there wouldn’t be much sense in putting this out there, so I appreciate each and every one of you who comes to my blog and reads what I have to say. You may not comment on every post, heck…you may never comment on a post I write, but the numbers don’t lie. My stats show that you are there and that you keep coming back. In fact, when I took a week off and didn’t do a thing to market the blog…no Pinterest, no Twitter, no Social Media at all, the numbers dropped, but a bunch of you still came by to see if there was anything new.

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You can see where I was away for the week. On Nov. 15th and 16th, I was in Vancouver for a volunteer meeting, and away from my computer the whole time. When I put the effort in, you do the same and come back to see what’s new…the numbers don’t lie, and I am forever grateful.

So, to wrap up 2018, I want to say thank you. You’ve helped me reach a far greater level of success than I ever thought I’d make, simply because you like to read my thoughts. That’s pretty amazing to me. I just want to provide as much information as I can to anyone who is living with Fibromyalgia, Chronic Pain, Chronic Fatigue or Invisible Illness. I want you to know you’re not alone. I’m right there with you and for as long as I’m able, I will continue to write and bring you articles and information to help you thrive.

I wish each and every one of you a very Happy New Year. May you be blessed in 2019 with the very best the year can offer. Remember…

There is always hope

Some Body To Love

I love my body! Despite the fact it’s a piece of crap on the inside and has been for a very long time…I still love it!  🙂

It’s not a model’s body, not by any stretch of the imagination, but my husband still finds it attractive after 24 years together. He took this photo back in 2011 when we went on our first cruise and when I asked him if he could find it (because I wanted to show it to our daughter to prove I looked good in a two-piece back then), he looked at me almost in disbelief and said “of course I can find it”. He knew exactly where it was because it’s a favourite of his.

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I was 49 when this photo was taken and I’m 56 now. I don’t look quite the same as back then but I’m working on it. I’ve had a hip replacement since this was taken plus another surgery, as well as many years of increased pain with my Fibromyalgia and other illnesses. In fact, over half of the Invisible Illnesses I live with now didn’t even exist in my body when Ray snapped this photo. But I still love my body, just the way it is right now.

I’m 5’2″ tall and I weigh about 145lbs right now. I fluctuate up to 160lbs. I have strong arms and legs, but my fingers and hands are weak. Once upon a time in 2008 in Calgary AB, I walked a Half Marathon in -23 degree temperatures (with a windchill of -30). The annual Running Room Hypothermic Half Marathon is quite famous and is now held in cities across North America.  This was my very first time – I took a training program but hadn’t trained properly near race day because of my health and really, I probably shouldn’t have even done it. However, I finished in 3:30:22 and in fact it was such a good race time that Ray almost didn’t make it to the finish line in time to take photos of me crossing (it was a surprise for me). I was delighted to finish and vowed I would never do anything like that again (I got a tiny bit of frostbite under my chin which was the only area left exposed).
HypoHalfMedal
I love my body now, but there was a time when I mourned for the body I used to have. Back in the mid-2000s, I used to be in great shape. I went to the gym, I had a trainer named Terrianne and I lifted weights – heavy weights. I was doing 40lb bicep curls and 80lb hip abductors and at one point, I could leg press 800lbs. Yes, you read that right…I could leg press 800lbs. I was well muscled and toned and in the best shape of my life. It was only because of 3 unexpected surgeries between 2006 and 2007 that my life derailed and I was unable to recuperate properly. In fact, I had barely done any proper training for the Hypothermic Half when the Marathon actually took place, so to finish in the time I did was a real testament to the shape I’d been in previously. We really take our bodies for granted when they’re running well, don’t we?

I still love my body! Even after everything it’s put me through with surgeries, and Fibro and Chronic Pain and Chronic Fatigue and all the other Invisible Illnesses, it’s the only body I have, so I try to stay positive and treat it well. I like to try to keep my mind sharp as well so I enjoy doing things like word search puzzles and crosswords and I’ve always enjoyed those online hidden object games. Because I don’t get out of the house a lot, I do tend to spend a lot of time on the computer, but sometimes, I’m aware of being “housebound”. It’s an awful sensation and it makes me feel like an invalid. A shut-in if you will. How about you? Do you ever feel that way?

Unfortunately, I have to use a cane for mobility purposes. I’ve had my right hip replaced and it works great, but my left hip still needs to be replaced in the near future. Additionally, my Left Achilles Tendon has been giving me problems for quite some time and even though I’ve seen a physiotherapist, he’s not been able to do much for me. We’ve tried massage and acupuncture and he feels that there’s not really much else that will help the problem, which he thinks is more with the tendon attaching at the bone. Ultrasound isn’t going to improve anything, so after 4 sessions, we’ve called it quits. The other reason for using a cane is that my right knee has problems with severe pain and an occasional buckling and collapsing problem. It’s arthritis that causes this and so I wear a knee brace and use the cane for stability.

Sometimes, when I’m out running errands, I have to use a rollator because the distance is too far for just a cane. Mine is blue and is made by Xpresso:

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I call it my “Pambourghini”. Seriously though, it’s great for use around downtown Langford where I live, or when I take the bus to the doctor because it folds up with one hand and it’s easy to transport if Ray and I take the truck somewhere instead.
Here’s the thing though – I don’t want to be defined by my Chronic Pain, and just because I use a mobility device doesn’t mean I don’t want to look my best at the same time. I try to dress fashionably but I also have my own unique sense of style. I can’t wear high heels, so I tend to wear shoes that have some sparkle to them. I love long dresses for a more feminine touch, and over the course of the last three years, I’ve gone from having summer hair (practically bald) to short hair to long hair.


And when I have a chance to go out with friends or with my husband on a rare date night, I want to look good. I want to dress up and be pretty and look like every other person around me. I don’t want someone to be able to pick me out of the room and say “oh, there’s the one with chronic pain”.

But while I care very much about how I look, I’m often too tired or too sore to go anywhere and when I do go out, it’s usually a medical appointment. The last person I need to impress is my doctor. In fact, I generally want him to see me at my worst, so he knows what my day-to-day look really does look like.

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In order to try to take care of myself, I’ve recently taken on a 30 Day Challenge to do 20 Squats, 20 Wall Push-ups and 20 Bicep Curls every day. I want to try and be as fit as I can in the body I have but I know I need to start slow so I don’t cause a Fibro flare-up. This was my modified answer to an invitation from a friend for a 100 Squats a Day Challenge. So far, I’m on Day 2 and I’ve done both days in good form!!! Go me! I set an alarm on my iPhone to remind me what to do and when, and I’m determined to follow through!

There was a time when I didn’t always feel this way. I felt like my body had betrayed me. It was hard to go from being so healthy to suddenly being bedridden half the time, or unable to go for a walk without using a cane. It was frightening to think that this was going to be my future, and chances were it wasn’t going to get better, only worse. And in a lot of ways, it’s been true. I’ve had to give up hobbies I loved because I don’t have the stamina to keep doing them.

When I lived in Calgary, AB, I used to sing in a women’s 4 part a cappella Barbershop Chorus called Rhythm of the Rockies, and in a quartet called Quintessence. We were part of Sweet Adelines International and our chorus would compete in Regional Competition against other choruses from BC, AB and SK – we were the All Canadian Region, Region 26! The winner of the Chorus competition would go on to International competition the following year. In 2005, Quintessence decided to compete for the first time in the Quartet competition and ended up winning Novice Quartet of the Year!! I think we placed 10th out of 16 Quartets as well. We were so proud of ourselves!!!

Quintessence

Quintessence Quartet: Cheryl (Baritone), Pamela (Bass), Lauri (Lead), Judith (Tenor)

Rehearsals became too much for me when pain and fatigue took over my life. We competed one more year, in 2006 but that was my final year of singing, including in the chorus. What a huge disappointment that was for me. I had been singing in some form or fashion for most of my life. And now, that was gone. It’s even harder now that I live where I live as the very excellent Pacific Edge Chorus from Sweet Adelines rehearses just down the road from me. I would love to be a part of singing again but I just don’t think I could manage the energy required to be involved again. I have to be honest though…every Tuesday night, I’m teased by the fact there’s a rehearsal going on!!

How do you feel about your body? Do you feel like your body has betrayed you since you first developed Fibromyalgia? What has Fibro taken from you? Did you use to be involved in any crafting or hobbies that you had to give up?

Do you still like your body?

Despite everything, I still love my body. I’ve forgiven it for what its gone through. I know it’s not it’s fault, it just is what it is. Overall, on the outside, I think I’m ageing well. I have no wrinkles, lots of silver in my hair which I love, and the older I get, the more content I seem to be with life in general. I’m in love with my hubby, my kids are doing well in their lives and my three grandsons are all happy and healthy. Those are the things I like to focus on, not the parts that are breaking down left, right and centre. I try to remain positive and stay joyous. Contentment IS achievable, but it takes fortitude and the right mental attitude.

If you’re struggling, I invite you to reach out. I have a wonderful little booklet with some powerful words from women I’d be happy to pass along to you, so if you’d like that, send me a message using the Contact Page. It’s about more than just body image…it’s empowering in many different ways, but all about being a strong woman. And that’s how I like to think of myself. I am a strong woman!

Our bodies are complex, but they’re all we have. Let’s all be strong and learn to love them again, just as they are.

Remember…

there is always hope

Conditionally Speaking…

Welcome back!

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:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • High Cholesterol
  • Brachydactyly Type E
  • Raynaud’s Disease
  • Hypothyroidism
  • 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 congenital syndromes.
Brachydactyly.svg
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:
PamToes1
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

DraggingMyButt

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, intractable 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…

There is always hope!

Furiously Happy – A Tribute

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:
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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!!
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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.

And remember…

there is always hope

Needle-ittle Update On Things? Sure!!

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


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

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

She's Alive…Aliiiivvvveeee!!!

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!

I'm A Happy Hippy, Part 1

I am the proud owner of a new hip, and she’s wonderful!!!!!!!!!!!!!!

First off, let me apologize for the huge delay in posting the follow up to my surgery on Feb. 7th. I should have known that a major surgery like this would cause me to be quite fatigued for a while, but I didn’t realize quite how tired I’d be! That being said, the surgery was a complete success and I couldn’t be happier with how things went!!! I’m going to break this up into three parts – Pre-Op, Post-Op, and Home Again. So…here we go!!

PRE-OP
I was up at 4am on Feb. 7th, so I could have my second shower with my super scrubbing brush and get all the last minute stuff done before we left for the hospital. We live in Langford which is a small city just outside of Victoria – normally about a 30-minute drive in good weather without rush hour traffic. Unfortunately, good weather is NOT what we’ve been having over the last few months – this is what Ray found and dealt with:


Thankfully, the roads themselves were pretty decent, even for that early in the morning and we arrived at the Royal Jubilee Hospital at approximately 5:30am – half an hour earlier than our scheduled time. There’s a Tim Horton’s coffee shop right beside Admitting so Ray grabbed a coffee, and then we sat in front of Admitting until they opened. We chatted quietly, and then suddenly, we were being met by the greeting committee of one – Georgie:
Georgie2
Now, Georgie is a handsome boy who lives across the street from the Royal Jubilee Hospital. His frustrated parents have given up on trying to stop him from coming over here – he’s an indoor/outdoor cat and when he’s outdoors, he treks over here to visit, supervise, observe and greet. He’s polite and friendly, but very busy and he doesn’t always have time to spend with you – there’s much to be done for this busy boy. Once the metal security gate around the Admitting Desk is open, he trots in behind there to the offices where he’s greeted and loved up and then gets on with his day. Ray and I were so surprised to see him, especially thinking the Hospital would take issue with it, but Georgie seems to have proven himself to be quite the character, and most people who are greeted by him seem to calm down, feel less stress and anxiety and be more talkative, instead of pulling into their shells because of fear. So…it’s a good relationship for everyone!

Alright…so after getting all the paperwork done, confirming I had in fact paid for my new hip, and receiving my hospital bracelet, Ray and I headed to the 3rd Floor to Day Surgery, where all surgical patients start out. It’s only after your surgery that you’re separated after recovery – either back to Day Surgery if you’re going home that day, or to your Floor if you’re staying as an In-Patient. As one of the first people booked for surgery that morning, it was fairly quiet when we got to 3rd and the nurses were just opening the doors. I was directed to a change room with a bag for my clothes and given in return two gowns (one to wear open at the back, one to use as a housecoat) a pair of booties and a hat. Ray took my stuff and then it was time to say goodbye. He had to leave for a meeting involving a volunteer program he was involved in at the hospital regarding prostate examinations, and I would be going through the lengthy check-in process with my nurse Amanda. We had a quick hug and kiss, he took my glasses as well as my clothes (I WISH there was a way to keep the glasses!!!) and away we both went.

Amanda got me tucked into bed, brought me one of those wonderful warm blankets and then we went through my health history. I asked her who would be starting the IV and she said probably her, so I told her about my crappy veins. I suggested we might want to put some heat on my arm now to try and plump them up and she agreed, so we got that started, then continued with the questions. We talked about previous surgeries, outcomes, all my various health conditions, medications, all the various tests I’ve had done, my Diabetes and blood testing, plus my Insulin usage…you name it, we discussed it. Then she went and grabbed the IV kit and we got going on that. I’ll give her tons of credit…she listened to me when I described my veins and what they would probably do – how they would act and react and what she could and couldn’t do if she didn’t get a stick the first time. And because she listened to me, she got that big bore needle in my arm the very first time, with only a small amount of having to probe around for the vein. She said after, she’s learned to listen to people because we know our bodies. We know what will happen and we’re right, so as a nurse, why should she pretend to know more than us? She was an excellent nurse…just the right amount of professionalism and personality!!

Once all this was done, there was nothing to do except rest, until it was time to be moved over to the Pre-op area. Dr. Burnett came in to say hi, and to initial the hip, making sure it was the correct side that we were operating on, and then before I knew it, I was being moved over to the Pre-Op Holding Area. I met with the Anesthesiologist there, who confirmed my choice of Spinal Anesthesia along with IV Sedation, and he explained to me how that would work. Once I was in the operating room and on the table, he would give me a sedative through the IV and then a needle would be placed directly into the cerebrospinal fluid that surrounds the spinal cord, numbing me completely from the bottom of my ribs down. I wouldn’t even know it was done. We chatted about a couple of other things and then he told me they would be ready for me in about 10 minutes. And sure enough…in about 10 minutes, they came to move me into the Operating room. I was introduced to everyone there, they slid me from my bed to the table and started doing lots of things around me. I asked if I could say a quick prayer as they kept busy and then just prayed for God to be with everyone in the room, guiding them to do their best work and preventing any problems from coming up. I also asked the Lord to be with all of the medical people and all the other patients having surgery that day as well, as it was a very busy surgical day. Once I was done, the Anesthesiologist let me know he was going to give me the sedative. I thanked everyone and told them how much I appreciated their hard work, and then off to sleep I went…

Moving on to Part 2 – Post-Op

There is always hope…

Getting Ready For Surgery, Part Two

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.
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 pyjamas 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:

there is always hope

The tattoo on my arm that reminds me there is always hope

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!