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.
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 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.
So…did I mention that on Thursday, I’m having an injection into my right knee to hopefully reduce the pain I feel and help increase my mobility? The injection is called Synvisc-One and it’s described like this (taken from the Canadian website):
Synvisc-One goes to work right where the pain begins!
Lubricates and cushions your joint
Decreases pain and discomfort associated with osteoarthritis
Helps you get back to your daily activities
Helps protect your cartilage against certain damage
Could delay the need for total knee replacement surgery
The only thing it DOESN’T mention is HOW FRICKING BIG THE NEEDLE IS!!!!!!!!!!!
Whoooooooo-wee! Well, it’s a good thing that needles don’t bother me. I have no idea if the doctor numbs the area first or not, but I have been told by the Pharmacist that I should stay off my leg for a few days after having the injection done. Sure wish I’d known that sooner…I have my “Train the Trainer” course on Friday. It’ll be fine…I’ve already confirmed they’ll cover the cost of a taxi there and back (and it’s at the Royal Jubilee hospital, not Victoria General if that’s what I said in yesterday’s post). I’m also going to use my crutches instead of my cane, and they’ll find something I can prop my leg up on. I’ll take a bag lunch instead of buying something and it’s all good.
The only thing left to worry about is this…
but I’m pretty sure Dr. Winston is fully qualified.
Yeah. Pretty sure.
There is always hope!
Well, I sure hope Y’all didn’t hold your breath waiting for the next chapter in my story because if you did, you’d be dead now.
I am so sorry I’m such a crappy keeper upper of writing. Partly it’s because I sometimes forget I have a blog and sometimes it’s because I feel so crappy that I can’t write. Mostly the second one. And SO MUCH has happened since I updated last, I hardly know where to begin. So…I’ll begin with the end and then go from there.
So the answer to the big question is YES…I did survive the wide excision surgery for the mole in the Lady Garden and when the pathology report came back, apparently everything that needed to be cut away was removed, so that’s good. Unfortunately, even at this date (March 4th), there is still an area that bleeds when scratched or rubbed – like the scar tissue hasn’t healed properly. I did have problems with the dissolving stitches not dissolving properly, and the scar itself is rather thick, but I think I’ll need to go back to the Gynecologist for her to have another look at why it’s not healing well. It’s disappointing to me because this whole experience has felt “wrong” from the very first time I saw the mole, and I just don’t think the story is over, even though the pathology report came back clear. Let’s just say that for now…I don’t think the Lady Garden is totally tended to and may need some minor pruning still to yield optimum results.
So, what else has been going wrong on that’s been keeping me away from here. Well, let’s see…
First off…HAPPY NEW YEAR!!!! LOL…okay, I realize you’re reading this in March, but it’s been that long since I posted last, so I figured I’d better send out greetings. I truly hope 2018 is a fantastic year for all of you. It’s been a busy year for me so far, mostly with health-related issues, but also with a lot of volunteer-related activities as well. Ray and I had a quiet Christmas and New Year and then BOOM! right back into the busyness of life.
My year started off with a visit to a Psychiatrist, to determine if I was Schizophrenic or not. Wow…what a way to kick off a year, right? The reason for this is because of hallucinations I’ve been having for quite some time. I can’t even remember if I’ve mentioned them on this blog before, but I hallucinate music, and now, more recently voices and other sounds as well. The music manifests itself often as classical, sometimes jazz or rhythm & blues and often country (and I’m not a fan of country music!). I “hear it” on the right side of my brain, but it sounds like it’s only inside my head, not like it’s coming from outside. More recently, I’ve started hearing voices. It’s not just one voice but sounds more like talk radio, or a group talk, but I can’t make out individual words or sounds. I know it’s English, but it’s almost like the people are too far away to hear. And I only hear them on the left side of my brain. There’s no one voice trying to tell me to harm myself or other people, or anything similar….and that was how the Psychiatrist was able to determine quite quickly that no, I don’t have Schizophrenia or any other type of mental disorder outside of my Bipolar Disorder. Unfortunately, he also couldn’t tell me why this was happening.
Dr. Leong, my Family Doctor, ordered an EEG to see if there was some type of complex seizure disorder happening, or a type of epilepsy, or something else that might be causing the hallucinations. It was scheduled for March, so that was great because it meant I could plan a visit to Calgary in January to visit my dear friend Charlotte and to see my wonderful son Troy….something I had meant to do in November for Charlotte’s birthday like I always do, but had to cancel because I was too sick to go last year. It wasn’t a long visit this year, only 5 days, but they were wonderful days, just being together. I miss Charlotte so much….talking every week just isn’t enough. I so wish I was rich beyond all measure so I could have a private jet whisk me there whenever I wanted, but I guess it’s only a pipe dream if you don’t actually buy the lotto ticket!
We had a wonderful lunch with Troy…he loves to see Charlotte as well, and we all non- stop talked for the whole time we had together. My boy just gets more handsome as he gets older…he’s 36 now…and yes ladies, still single. He’s dating, but hasn’t met “the one”.
The other reason a March date for the EEG was good was that it meant I’d be able to attend the Quality Forum 2018 in February. It’s a huge Health Care forum held in Vancouver, which I’ll talk about more in my volunteer activities below.
So, back to the EEG – I had that done this past Friday, March 2nd. My technician was a gal named Regan…she was great! Really knew her stuff, had a great sense of humour, so we spent 90 minutes together while she got me ready, did the test, etc. The first part was for her to take a pencil and mark my scalp in a million places, for where the electrodes were going to be placed. Then, she took a dab of sticky glue and glued the electrodes to my scalp and to a few places on my face, finally gathering everything back into one neat ponytail!
After that, she gave me some instructions, such as closing my eyes and spelling my name, opening and closing my eyes, doing some deep breathing for 3 minutes (to a specific pattern, which was REALLY hard at the end – I was practically gasping for breath!!), and then towards the end, she placed a very bright light near the bed and told me that I would need to open and close my eyes at her command, but when they were open, I could look down at my feet and not directly at the light. That was great, except it was bright like a strobe light and I immediately got an ocular migraine, with the zig-zag pattern, but no pain. It’s not a big deal, and I know it only lasts for 30 minutes, but I was really hoping it wouldn’t happen. Oh well….could have been worse. Then the test was over, and the time had come to remove the electrodes and to clean the goop out of my hair. It actually wasn’t too bad…the stuff felt more like a hair gel than anything. My hair is quite long and straight…the stuff would have worked better on someone with short hair. She said the results would be to Dr. Leong in a week, so here’s hoping there are some answers. The last time I hallucinated was 2 days before the test and she said that things can be picked up even a week before, so if the brain was going to be able to show a problem, it would. Cross your fingers!!!!
I guess the blessing with these hallucinations is that it’s really more inconvenient than anything, but sometimes it all gets really really loud in my head and then I start panicking. The last time it was like that, I put my headphones on and watched 2 movies, trying to drown them out and it didn’t work and I got really freaked out. I found out later, I could actually call the Crisis Line and they could send a team out to help determine how to best help me at that time, so that’s a relief to know for the future. Mostly though, it’s just music in the background of my brain, and I just need to ask Ray for confirmation that it’s happening.
So, there’s been that to deal with. And then the problem with my left Achilles Tendon becoming inflammed has become more of a problem than I first thought and is affecting how I walk, which is causing pain in my new hip joint. I need to go for physio, but I just can’t seem to work it into my schedule, because it seems like every time I want to try and book it, I’m feeling like crap. There’s a physio place within walking distance, but of course, walking hurts, but if I try to take the bus, I still have to walk about the same distance to get to the bus depot. If I use my walker, it’s better than just the cane, so I’m just going to have to buckle down, set a date and go, whether I feel like crap or not. And as for the feeling like crap, that’s coming from all my normal pain issues, plus the added pain from my right knee, that is still collapsing under me with that sharp bolt of pain, even when I have the brace on (which I wear during all waking hours), plus I’m having frequent Trigeminal Neuralgia flare-ups that are just agonizing (in addition to the pain being felt in my face, it’s causing spasms in my esophagus now as well), AND I’ve developed major pain in my right shoulder and the right bicep/tricep muscles for no reason I can determine. Apparently its Frozen Shoulder according to my Physiatrist, Dr. Winston, and he was telling me that my shoulder capsule is affected by almost 50%. He showed me a stretch to do (while working me over) and holy was it ever painful. I AM SO SICK OF MY BODY BREAKING DOWN!!!!!!!!
Seriously, it seems like every time I turn around, something else in my body is going wrong. I hate complaining; that’s just not the person I am, but this blog is where I vent and you, my unfortunate readers, get to listen. It’s just so frustrating!!! I am hoping for some relief next week though. I see Dr. Winston again on March 8th, and he’s going to do a knee injection for me of a product called Synvisc-One – it mimics the fluid naturally found in the knee and if it works for me, should help relieve some of the pain I experience from my osteoarthritis. I have NO idea if it will make the collapsing sharp bolt of pain go away, but it would allow me to go with Ray on rides on the motorcycle again and to not have knee pain 24/7. It would also stave off a knee replacement as well. It’s a 2- Injection process…1 injection every six months. We’ve checked, and our insurance doesn’t cover it, so we are paying almost $500 for the cost. I should ask Dr. Winston if there is a similar product for the hips as my left hip will need to be replaced in a couple of years as well. I am also hoping he will have some Botox in stock to inject in my face where I experience the worst of my Trigeminal Neuralgia flareups, in the hopes it will either stop them, or slow down the frequency. I’m waiting to have an MRI done (for my hallucinations and for the TN as well) and then I’ll be able to get a referral to a Neurologist to discuss having the Microdecompression brain surgery to “cure” the TN. It’s a brain surgery where they go into the skull, and put a sponge between the Trigeminal nerve and whatever it’s touching, so it stops firing off all the time.
Plus in addition to all that, I’ve been having some issues with my Gastroperisis which has been making eating difficult, and my Chronic Fatigue has made doing everything and anything soooooo difficult because I’m sooooooooo freaking tired. I can (and have) slept for days on end, getting up only to pee and MAYBE eat something, but I wake up even more tired. When I have had some energy, I’ve been trying to stay active with my volunteer commitments and wow, has there ever been a lot going on there!!!
VOLUNTEERISM…..(I actually get more than what I give…really!!)
As a refresher for what I’m doing as a volunteer right now, I am currently sitting on 2 different committees, plus getting ready to attend a “Train the Trainer” seminar, regarding Strategies in Patient Oriented Research (SPOR).
The committees I’m involved with are both through my involvement with PVN – Patient Voices Network. One is with the BC Patient Safety Quality Council and my role is with the Oversight & Advisory Committee as Co-Chair along with my partner in crime Ben Ridout. We guide the activities of the PVN as well as ensure that patient voices are included in the planning of PVN initiatives and operations, and that patients’ advice and recommendations are considered in all activities. Also, the Committee and the BCPSQC work collaboratively on patient and public engagement, with the goal of improving and promoting the work of PVN.
My second commitment is to the BC Emergency Medicine Network Team – Clinical Resources Committee, which meets quarterly via telecom from around the province. This committee is dedicated to providing the most comprehensive Canadian repository of Clinical Resources and Real-Time solutions for BC’s Emergency Room Doctors, Nurses or other medical personnel, in one easy to use location online. These resources include Clinical Summaries, ECG’s, Patient Information Sheets, Procedural Videos, plus Websites and Apps. We welcome input, and your resources to continue to grow the information we currently contain – visit us at https://www.bcemergencynetwork.ca/
Because of my involvement with PVN and with the BC Patient Safety Quality Council, I was invited to attend an annual event that BCPSQC hosts, called Quality Forum. At its bare bones, The Quality Forum unites hundreds of people working in British Columbia’s health care system to share and discuss how to improve health care quality and patient safety. It takes place over 2 days, with an additional “pre-day” of events. This year, the choices included either a day-long workshop on Designing and Delivering Sustainable Improvement or a huge array of Health Care workshops that were hosted with the Joint Collaborative Committees. In the evening, there was a ceremony to honour the winners of the Quality Awards, celebrating improvements in Health Care in a variety of different categories (in which I was a judge for this year). After the awards had been given out, the annual evening event started – Health Talks!
Health Talks is sold out every year. This year was no exception and with the lively Stephen Lewis as the Host, each of the eight participants had been invited to answer the same question: What are your hopes for health care?
Rather than just have boring old talks though, the speakers were required to use something called the PechaKucha 20×20 format, where each presentation contained 20 photos and each photo was displayed for exactly 20 seconds before automatically advancing to the next one. Everything had to be precisely timed, so you fit your talk into your 20×20 format, and it was fun to see the creativity that took place as each speaker strove to tell their tale in a way that stood out and connected you. Here is a link to the speakers, so you can find out more about them and what they wanted to share with the audience…each of them was amazing!!!
The main part of QF18 was amazing – not only were there amazing workshops and educational tracks to take part in, there were also incredible Plenary Speakers each day, plus 50 fantastic Story Boards created by various Health Care teams across the Province, each highlighting the amazing work their groups have been working on to improve processes and Patient Care. And food. Oh my goodness, the food!!! I believe there were approximately 950 – 1000 participants at the Hyatt Regency Hotel in Downtown Vancouver, and they fed us all very well indeed, with breakfasts and lunches on each day of the program, including the “pre-day”. No menu was the same and I don’t think I’ve had a fresher salad than I did there, plated before me on Thursday and Friday! Oh, and I was also reminded just how much I love creme brulee!!
Overall, it was an amazing three days of education and fun! I was supposed to fly home on Friday, but there had been snow in Vancouver that morning and my flight was canceled as Harbour Air couldn’t fly their seaplanes out of the harbour because of the weather. BCPSQC took care of booking my hotel room for another night and booked me a flight on Saturday with Westjet to get home. That flight was scheduled to leave at 2pm, but on Saturday morning, I received notification that it was delayed until 4pm. The hotel let me have a late checkout, so after sleeping in, I took the Skytrain to the airport (I haven’t been on the Skytrain since I last lived in Vancouver, so we’re talking back in 1994!!!!) and found out there were even more delays when I got there (plus a gate change. By the time it was all said and done, I finally got home at 8pm – and literally cried in Ray’s arms when I finally saw him at the Victoria airport. I had been gone since Tuesday…it was a LONG time to be away from him and from Dorie cat. I think I crashed for three full days of sleeping (and getting up just to pee, and then going back to sleep…I don’t even think I ate!) before I was recharged again. It takes a huge amount of my energy to do these kinds of trips, but the value of doing them is too important not to.
On the good side though, these Vancouver trips mean I get to see my darling daughter Ashley which is always a treat!!! Doesn’t she look lovely?
I also had the chance to meet with an online friend named Julie. She and I have “known” each other for several years now, but never had a chance to meet before this. She came with a friend to the hotel and we had a lovely time chatting over coffee…and managed to get a great “selfie” together before I had to head back to my next workshop:
So, a HUGE thank you to everyone at the BCPSQC (@BCPSQC #BCPSQC) who sent me to attend this amazing forum. It was wonderful to finally attend, as last year, I was part of the Steering Committee, but couldn’t attend because I was having my hip replacement surgery. I am forever grateful for this opportunity, I learned so much, I had chances to speak up and share my learned experiences, and I made some great new friends as well!!
And if you think all that isn’t enough, I have taken on one more volunteer assignment. On Friday, March 9th, I will be taking part in a “Train the Trainer” program through the BC Support Unit, whose mandate is Advancing Patient Oriented Research. The course material is to teach the Foundations in Patient Oriented Research, as Patients become more involved in their own care, and as healthcare focuses more on Patient Centred Care.
What is Patient Oriented Research? The BC Support Unit defines it as “research that is done in partnership with patients, answers research questions that matter to patients, and aims to improve healthcare”. Further to that, the current services that BC Support Unit offers include patient engagement, research methods support, data access & use, knowledge translation, and training & capacity development through webinars, online resources, and an annual conference. I’m excited to be able to learn how to facilitate the Foundations course, so patients…and really, that means ANYONE in BC, can learn and understand exactly what Patient Oriented Research is, and why it’s so important to them personally, and to Health Care in general.
I know it sounds like a lot, after reading this, but really, my time commitment isn’t a lot. For the Oversight & Advisory Committee, it’s a few hours for every 2 months, and for the BC ER Network, it’s a quarterly Telecom meeting right now, with some reading materials etc. to go through in between. I won’t know the true time commitment for the Patient Oriented Research after going through the Train the Trainer session, but even then, I have control on whether I’m able to co-facilitate a group or not. I’m very careful to not take on too much because I know my Chronic Fatigue Syndrome will cause huge issues if not managed properly. I’m just so passionate about helping make a change in Health Care so people can have better access to care and treatments and stuff like that, it’s hard to say no sometimes!!
Anyway, I do have something coming up soon that I am REALLY looking forward to….Ray and I are going to take the Victoria Clipper to Seattle, WA for a couple of days in April and while we are there, I am going to be meeting a very dear online friend from the United Kingdom named Carrie Ann Fitton!!!! She is my “Chickie” and I am her “Mum”….she’s the same age as my kids, and I’ve kind of adopted her. She’s quite alone in her life…she had a baby boy who died of cot death and her dad, whom she was very close with, passed away last year, so she’s had a lot of struggles. She doesn’t have much family left and no one that’s close really, except an Uncle she sees, but it’s hard, because he enjoys a drink now and then, and Carrie quit drinking just a shade over a year ago!!!!!! I’m so proud of her! She went through some very tough times – she’s got some disabilities and uses crutches to get around (much like me and my cane and/or walker) and she’s short and sassy like me, so we’re quite the pair, but I’ve been a Mum figure to her for quite awhile now and I think that’s been really good for her. Anyway, she is flying to the US in April to visit a girlfriend first, and then meeting us in Seattle. She and I will be meeting some other online friends on April 14th, then Carrie and Ray and I will return home to Victoria. Carrie will stay with us until the 21st and then fly home, and while she’s here, another online friend that neither of us has met is flying in from Toronto!!! Tanya is going to join us for whale watching and other touristy stuff, and I am SO EXCITED ABOUT THE WHOLE THING!!!!!!!!!
So, I think that pretty much brings everyone up to date on where my life has been and is at since I left you hanging at the Lady Garden gate last time!!!! I promise…on my honour, to try harder at keeping things more up to date here. I won’t even bother making excuses. I’ll just try harder.
Thanks for being so patient and reading through this schlimazel. Oh…OH!!!!
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……”
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!
Part 2 – Post-op – Day 2
After a night of basically no sleep, I “woke up” to experience my first attempt to get out of bed. Wowzers was that ever a challenge!!! I don’t have a ton of strength in my arms, but in order to get in and out of bed, you need to use them for balance, and strength and pushing, etc. The nurses were all fantastic at helping if I wanted it, but I’m also so stubborn, I want to do everything myself.
So, using the instructions of the nurse, I was able to sit on the edge of the bed and “dangle”. That’s what they call it – dangling – and it’s important to do that first, to make sure you’re not dizzy and aren’t going to collapse on the floor when you stand for the first time. After I assured them I was okay, they helped me put my Crocs on – easy footwear to slip on and off – and then using my walker, I stood slowly for the first time. I won’t say it was painful, but it felt really weird – maybe because the motion was smoother, since everything fits together properly now. Most of the pain was in the upper thigh and groin area, not the hip, so that was a bit strange. At any rate…I was standing…and all this effort so I could use the portable commode beside my bed, instead of a bedpan!!! Yes, that’s what this was all about – peeing!
Relief and laughing!! I did it!
Of course, once you get out of bed, you have to get back into it again. And that too has challenges…because of the 90º restriction, you can’t just bend and twist as you might normally. In this case, you have to back up to the bed, and then using your arms and good leg, swivel yourself into the bed and then scootching over bit by bit. It’s exhausting!!!
And you’ve already seen this one, but yes…it’s the same kind of relief every time you successfully get into bed!
During this day, I was up for most of my meals, instead of having them in bed. Sitting in a chair is basically the same procedure in that you back up to the chair, then put your operated leg out while using the arms of the chair to help you ease down into the seat. It’s tricky at first, but I got the hang of it quickly and found it much nicer than just laying in bed. It made eating a lot easier too, having the tray right there in front of me.
Chocolate Ice Cream! Do you want some honey?
The rest of that day was pretty basic, with the exception of having the Physical Therapy aide come to teach me some movements to encourage healing. I was told I would be able to go home the next day, and I was soooo happy! It’s nice to be taken care of in the hospital (and I was cared for VERY well!), but there’s truly “no place like home”! And after another night of little sleep, that’s exactly where I went…home, to my hubby and my cat Dorie and my own bed!!!
Dorie keeping my chair warm at home!
And as promised, I was released the next morning. I managed to get into the car without too much pain but was relieved to be home. I spent the majority of the first week home sleeping in bed or resting in my chair. I had purchased a cryotherapy unit for icing the hip to keep the swelling down, so Ray was in charge of getting that set up for me each time – adding the ice and water, etc. If you ever need ice therapy for an extended time, I HIGHLY recommend using a machine like this…so much better than ice bags or bags of veggies from your freezer!!
Getting ready to shower…this is after taking the bandage off for the first time. The circular impressions are from the bandage itself. Look at how beautiful that incision is…my scar is going to be almost invisible! Great work!
Over the last couple of months (March and April), I’ve made a great recovery. I’ve had one x-ray, just prior to seeing Dr. Burnett for my first post-surgical visit, and everything seems to be settling in well. I had the staples removed at that point as well – all 53 of them! Everything is healing beautifully and the scar is so thin, it’s going to fade into nothingness with no problems at all. Dr. Burnett truly did a masterpiece of work when he put me back together!!
I’ve been to Physiotherapy twice now to learn exercises to do at home between appointments (every three weeks). These are standard exercises, like the attached (this one is from my second Physio session), but wow, is it ever hard work in the beginning!!!
The only thing I’ve noticed is that I still have a lot of pain in the upper thigh/groin area and just recently, I’ve noticed that my new hip is “popping” when I walk. I’m sure it’s just everything settling into place, and with regards to the thigh and groin…when you consider muscles were cut and moved to accommodate inserting the new hip, things ARE going to feel weird/painful for some time. I do have a bit of a leg length discrepancy…the operated leg feels a tiny bit longer than my left leg, but again…that’s something that could take up to a year to finish healing properly.
The only other “issue” I’ve had with this surgery is the fact that my right knee is also/still a problem. I’ve been wearing a brace during waking hours, but without it, I’ve had frequent incidents where my knee will suddenly “collapse” from under me, with a huge bolt of pain shooting through. I’ve had it x-rayed and the results are osteoarthritis with a “loose body”, but so far, the doctors at Rebalance haven’t felt like there needs to be anything done, other than wearing the brace. I’ve noticed though that even when the brace is on, I can sometimes still feel that collapsing feeling and mildly, that bolt of pain. When I walk, whether with crutches, a cane or without any aid, my gait feels different. I’ll be discussing this during my next visit with Dr. Burnett, which happens in early May.
So…if I had to do this all over, would I? Absolutely!!! For the first time in I can’t remember how long, I no longer have the feeling that my hips are being crushed between a vise. Sure, there is still some pain and discomfort, but it’s NOTHING like what I felt before. I’m hoping I can actually decrease the dosage of my OxyNeo Slow Release oxycontin med for pain relief – there’s been that much of a reduction in my overall pain levels. I do still have the pain from my various other problems, but having this hip replaced has helped to diminish a huge part of the pain equation. I’d do surgery again in a heartbeat to get this relief!!
Thanks for following this part of my journey. I will be continuing to blog about life in general as well as the other medical issues I live with, as a source of information and encouragement for others.
So what IS happening in my life, beyond hip surgery?? Well, let’s see…
Remember…there is always hope!
Part 2 – Post-op
If you haven’t read Part 1, you probably should. It will help familiarize yourself with what’s happening as we move towards Post-op. Go ahead…I’ll wait.
< insert Jeopardy music here>
Welcome back and here we go!
I know that the surgery itself went very well, but I really was quite sedated for most of it. I did wake at one point, maybe when they were positioning me, and I could hear some hammering and a couple of voices talking, but it wasn’t disturbing or upsetting. I remember looking at the Anesthesiologist and sort of smiling at him, like “oh, hi there!”, but before I had time to realize that was my new implant Dr. Burnett was hammering into my leg, I was drifting off to sleep again. That spinal anesthesia/IV Sedation really was quite lovely and I think if I ever have surgery again and it’s an option, I will most definitely take it!!!!
The next thing I remember was a bunch of people moving me onto a bed, and then being rolled into a new room – so the transfer from the Operating Room to the Recovery Room. Because I hadn’t had the General Sedation, I was quite awake once the Anesthesiologist gave me medication to reverse the effects of the sedation I had received in the Operating Room. Again, I wish I’d had my glasses because I would have felt even more like “me”, but I understand the issues with potential loss, etc. My nurse was excellent in regards to pain control and making sure I wasn’t trying to tough it out. Because of my Fibromyalgia and Myofascial Pain, I’m already taking long acting Opioid medication and was able to follow my usual drug scheduling leading up to surgery. I am sensitive to Morphine as I find it makes me quite itchy and “jumpy” and I also get very nauseous, which is a problem for me (have I mentioned earlier that I am unable to physically vomit due to a previous stomach surgery? If I am that sick where I am retching and dry heaving, etc. I end up having to go to the E.R. to get a Nasogastric tube shoved down my nose into my stomach to get rid of whatever’s in there, so there’s nothing to puke up. Sorry…that was probably too much information).
Anyway, Fentanyl is typically ordered for me in hospital so that’s what I was given and it worked really well. That plus the fact I couldn’t feel my legs (“you ain’t got no damn legs!”) really did make the time in the Recovery Room go quite comfortably. My nurse would check me frequently to see if I could feel my toes or my knees, etc. and I was finally starting to get sensation back in the left leg after an hour, and then in the right leg about another hour later. I know that the right leg, the operated leg, was more heavily frozen and took twice as long to finally regain all feeling again. It was the weirdest thing, to stare at my toes and try wiggling them, and not be able to do a thing. It gave me an appreciation for what paralyzed people might go through, and how the tiniest movement is so joyful when it happens!
I would like to showcase the latest in legwear – the flattering compression leggings and pumping circulation wraps to prevent blood clots!!! Take a look at this and then the picture beside it shows you why. Don’t look at my tushy (blush blush!) ha ha ha!!!
Blood clots are a major concern after any surgery, but after certain surgeries in particular, total hip replacement being one of them. I wore these leg pumps for the entire time I was in bed, only taking them off to use the bathroom and to walk. Once I was back in bed, on they went. I am on blood thinners for a specific period of time as well.
Regarding the second picture, you can see my surgeon’s initials at the top. There are 53 staples in there and I think the incision is approximately 9 or 10 inches long. It’s absolutely straight and clean and will heal up beautifully!!! No wonder Dr. Burnett is the best!!! To get a better idea of where it’s located, I am laying on my left side, and the incision is on my right hip. The top of the incision is on the left of the picture and if you count off the spaces between the pen markings, my hip bone is between 4 & 5, almost right under the initials.
When I had regained a good portion of feeling back, I was finally moved from Recovery to my room in the South wing of the hospital. I had a private room – not that I had requested one, but apparently 80% of the rooms are private, which in my opinion is quite lovely. I don’t mind a roommate, but I really prefer my solitude, especially because I don’t sleep and I’m up at all hours. I would feel guilty if I disturbed anyone. I’m also fortunate to have Insurance coverage for this too.
The nurses kept me on oxygen the entire time I was there. I had planned on using my CPAP machine, but because I really don’t sleep much in the hospital, I had Ray take it home and just stayed on the oxygen. Here I’m just resting after getting all settled into my room. I’m waiting for Ray to get here…oh, and look. Here he is!!!
And yes, I finally have my glasses back too!!! All the better to see my fantastic husband. How I love this man…he takes such good care of me. I only just noticed after adding this picture how close I came to giving you a peep show with my gown slipping. Geez…you already got to see my tushy…I think those drugs really did a number on me. Time for some sleep me thinks!!! Actually, what I really wanted was food. I was so hungry at this point (I’m guessing this photo was taken around 7 or 8 pm?) but my Nurse Lisa told me that if I ate, I’d probably just get sick and throw it up (aka, get the dreaded NG tube!!) even if I didn’t have a General Anesthetic. I still had drugs in my system and she’s seen it happen enough. I did get some tea finally and then at around 11pm, Lisa showed up with this:
Yes, that was a roast beef sandwich on white bread with butter than I inhaled plus crackers and cheese!!!! I ate the first half of the sandwich so fast before thinking “oh, I should take a picture for the blog”. Ha ha! It really was the best thing I’d eaten in a long time. Finally, I felt tired enough to try and sleep, so we did one fun go-round with the bedpan (there was no way I was ready to try and get out of bed yet, nor did they really want me to) and then off to the Land of Nod.
Thus ended Day 1. I shall continue the adventure again tomorrow!!!
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!!
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:
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…