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…
Did you automatically sing that title as “talking bout my Generation”? That’s what I was aiming for!
I want to talk about Mental Illness today and the meds I take. I’m not ashamed to say I have Bipolar Disorder but I know there is a huge stigma around having a mental illness and talking about it. There are far too many people who grew up believing you should keep things like that hush hush because it would ruin your reputation, and that of your family if you said anything. People were put away in homes and hospitals who were severely mentally ill, or stories were told about “crazy Aunt Gladys” or “weird Uncle Marvin” and you knew you weren’t supposed to either hear them or repeat them.
Things are changing thank God, and I’ve never been afraid to just come out and say “I am Bipolar” in conversation. It’s a part of me, so why would I hide it? It was actually a relief to finally have a diagnosis because then I knew what those manic highs and depressing lows were all about. Do I like the highs and lows? Sometimes. They can be exciting, and energizing and fun. They can also be ugly and messy and scary. But the overall thing about having BD is that it’s uniquely a part of me. Take it away, and I would be so different. Less courageous. Less outgoing. Less interesting. Less, less, less….
One difficult thing about having a mental illness is the issue of being on medications. What you’re trying to do is balance the chemicals in your brain called Serotonins. Finding the right balance is a tricky business and can sometimes take years. I know people who have been on up to 17 different medications at various times, just trying to find the right combo that works for them. I’ve been lucky in that I was put on Seroquel when I was first diagnosed and it worked well for me for a long time.
It wasn’t until late 2016 when I started experiencing the auditory hallucinations – I could hear music when others couldn’t, and I knew something was going on. I saw a Psychiatrist to rule out any new mental illnesses, and then Dr. Leong recommended the MRI and EEG I’ve talked about in earlier posts. We also decided to switch the Seroquel to something new and that’s when I started taking the Abilify.
I was nervous about taking it at first because of the list of side effects. I am bolding the ones I’ve experienced so far:
Common Abilify side effects may include:
nausea, vomiting, changes in appetite, constipation;
drooling (mild, at night);
a headache, dizziness, drowsiness, feeling tired;
anxiety, feeling restless;
sleep problems (insomnia);
cold symptoms such as stuffy nose, sneezing, sore throat.
Now, why can’t Drug Manufacturers automatically make a drug with weight LOSS as a side effect?? Why is weight GAIN always the big one listed (haha). Seriously…what are they putting in there…hot dogs?? Milkshakes? Okay, I’d take it in milkshake form (I LOVE milkshakes!), but I just don’t understand this. It must be a filler of some kind. Then there’s drooling. What the hell kind of side effect is that??? DROOLING??? Who thinks these things up?
“Do ya think we should make people drool with this one?”
“Oh yeah…we haven’t added that one in a long time. I bet people miss that side effect…yeah, let’s add it”.
*snork* Right! Okay, so now, I’m fat and drooling. How else can we make this attractive? Oh, I know…let’s make me constipated too! And then we’ll make me super tired, but add in insomnia, so I can’t sleep!! Mwaaaahaaahaaahaaahaaaaa
Yeah…that’s about what it feels like. Seriously, I don’t understand why half these side effects are considered acceptable, but we go ahead and take them, because the side effects are worth the overall benefit of the drug itself. And what benefit am I getting from the Abilify? Well for one thing. I have energy again. And an interest in life. I’m not spending 90% of my day sleeping. I’m doing the household chores again. I’m getting together with friends again – socializing. I’m still in chronic pain, but my brain is in such a better place that I’m managing my pain better. Could I go back to work in this condition? No, not a chance. My pain and fatigue still wipe me out, and I can only manage small chunks of all of these things, broken up throughout the day, but the fact is, I am able to do them again.
I don’t know how long it went on for, but most of my days on Seroquel were spent either in bed sleeping or in my recliner, playing on the computer. I would aimlessly shift between Facebook and a select few other websites I frequent, like Pinterest, some contest sites and game sites where I enjoy solitaire or various slot machines (not for real money). I still do that now, but it’s in between all the other things I’ve found interest in again. I also tend to do a lot of online shopping. Too much, and this can be part of my mania cycle of BD as well. My husband never says anything as long as I record my transactions in our financial system. But I’m doing other things like crafting again, and I’m making cards again for birthdays and stuff, and I want to learn to crochet again (I was just starting to learn and then boom!, totally lost interest when I started having trouble with the Seroquel and didn’t KNOW I was having trouble with it).
Now, here is the list of SEVERE side effects of Abilify. Again, I am bolding the ones I’ve experienced so far:
Call your doctor at once if you have:
severe agitation, distress, or restless feeling;
twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs (very rare and only for a moment);
mask-like appearance of the face, trouble swallowing, problems with speech;
thoughts about suicide or hurting yourself;
severe nervous system reaction–very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
low blood cell counts–sudden weakness or ill feeling, fever, chills, sore throat, swollen gums, painful mouth sores (I get inflamed tastebuds), red or swollen gums, skin sores, cold or flu symptoms, cough, trouble breathing; or
high blood sugar–increased thirst, increased urination, hunger, dry mouth, fruity breath odor, drowsiness, dry skin, weight loss **oh LOOK! There’s my weight loss, but look what I have to go through to get it!! 🙁
Because I have Type 2 Diabetes, I have to be extra careful in taking this medication. I need to check my blood on a more frequent basis, to make sure I’m maintaining optimum blood sugar levels at all times. I currently inject 14 units of insulin at night only and have done so for about 3 years now. If I notice that my sugars are going quite high on this med, we may have to change that up, and that will be hard for me. I like the benefits of this drug, and I’m not sure I want to start experimenting with other medications.
So…what about you dear reader. Do you have a mental illness? Do you talk about it if you do? Why or why not? Do you know other people who experience prejudice because of a mental illness? How are they treated differently? Do you stand up for them? Advocate for them?
It’s a scary world out there for people with mental illnesses. We never know for sure who our allies are or where we can feel safe talking about our lives and what we experience until we start talking to others. I make myself a safe haven. I talk about my mental illness so others know they can be safe and vulnerable around me. If you need someone to talk to, contact me. Anything said to me stays private, even from my husband. If you’re on Facebook, look me up. Same with Messenger. Just put the words There Is Always Hope in the subject line, so I’ll know it’s not spam.
If you have anything you’d like to share here, please feel free to add a comment. Thanks for reading and remember…
I’m doing a tribute today to an amazing woman named Jenny Lawson. You may have heard of her. She’s an incredible writer and the author of the books “Let’s Pretend This Never Happened”, “Furiously Happy” & “You Are Here”.
She writes about her own struggles with depression and man, can she write!!! Her sense of humour is incredibly warped and twisted (just the way I like it), she blogs as The Bloggess (thebloggess.com) and there are several Facebook fan groups as well, one of which I belong to. We are her Tribe. We get her. We understand what she goes through and experiences, and even if some of us don’t live with depression, most of us know someone who does. For me, it’s my husband.
I wrote this piece one day when I was feeling overwhelmingly happy that I had found this particular Tribe to call my own. Here goes:
I live with several health issues that leave me in constant chronic pain: Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, Chronic Fatigue Syndrome, Forestier’s Disease, Trigeminal Neuralgia, Diabetes Type 2 (on insulin) and Bipolar Disorder. I had Total Hip Replacement on Feb. 7/17 (with my left hip needing to be done as well and possible knee surgery on my right knee later on) and am having a good recovery. I am still in pain, and always will be.
I used to think that my “furiously happy” would come when I no longer lived in pain. Its only been in the last year or so that I’ve come to realize that will never happen. I will NEVER be without pain…that’s just the nature of my body. And when I realized that there would always be the pain, I thought at first “then I will never truly be happy”. I have an amazing husband, whom I love beyond measure. I have 2 grown up kids that I still worry about and three grandsons that I never get to see because of distance. We keep in touch though with social media, and that’s a good thing, but it’s far from being furiously happy.
Because of my health, I had to give up a career that I adored…Admin Support at the Executive level as well as being a Certified Event Planner. I loved my job with every fibre of my being, but came to a point where I physically couldn’t manage it any longer, and with my chronic fatigue, would never be able to manage again. Everything in my life seemed to be about loss…losing a job, losing my hobbies, losing professional relationships, losing friendships, losing mobility, losing at life.
Hubby and I decided in 2013 to make a move to Vancouver Island from Calgary after the weather in Calgary became too much for my body to handle…too cold, too much snow, too long of winters, too icy…too, too, too. We moved here without a job for Ray or even knowing what our apartment looked like – we rented it sight unseen. Slowly, we started making Victoria our home – walking by the ocean, going for coffee or dinner at various places. I soon realized how much I loved it here, even though there were really no friends to share it with (two couples and one girlfriend and that was all that I knew – and even then we rarely saw each other).
One day, I found the Jenny Lawson book Furiously Happy. I have never laughed so hard in my life. I gave the book to Hubby to read and HE has never laughed so much…and he’s not one to show much emotion ever, good or bad. But he laughed and often. From there, I found her website and her other book and then all of sudden, there was THIS group. People like me. People who were struggling and depressed and suffering mentally and physically and I thought to myself “God, thank you for bringing me home”.
Because I realized quickly that I seemed to be good at encouraging other people in their struggles, so I didn’t have to think about mine. I could offer advice or words of comfort, or just the right kitten picture and something would change for the good in that other life. And MY life felt better because of it.
And then I knew, the way that I became Furiously Happy was by being myself and sharing my life with those of you here who needed what I had to offer…a shoulder to cry on, a hug, some understanding, appreciation…whatever you want to call it. I became Furiously Happy because OF Furiously Happy. And now I have my Hubby and my family and my friends and my volunteering AND MY TRIBE!!
Now, the reason I’m giving a shout out to Jenny today is that she has been undergoing a new treatment for her depression called Transcranial magnetic stimulation (TMS). It’s described like this: (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.
Jenny started treatment 2 weeks ago…and people…IT’S WORKING!!!!!
I want you to go to her blog and read all about it. If you know anyone who is experiencing major depression in their lives and no other treatment has worked, then this MIGHT be an answer for them too. I admire this woman so much, and I’m so delighted that this is working for her, I simply had to share. Please go check it out, buy her books (you will laugh, trust me) and find your tribe if you haven’t already.
If you live with Chronic Pain, Chronic Fatigue, Fibromyalgia, or Invisible Illness of any kind, you can’t go through it alone. You need to find a support group. If you look me up on Facebook, I can introduce you to the Fibro group I belong to. We support everyone who is in pain. And if you’re a fan of Jenny Lawson and want to join the group on Facebook I belong to, use the contact page on the blog here, and let me know.
Well, here it is. The first post on my new blog “there is always hope”. I’ve decided to start a blog to share my experiences with having an invisible illness (or in my case, illnesses), as well as to document my journey through having a Total Hip Replacement. Thanks for joining me!
My name is Pamela. I’m 54 years old, living in Victoria, BC (Canada) and married to the most amazing hubby a gal could ask for. Ray has been by my side since we first connected in 1994, through a telephone dating service, back before the internet was even a thing. We hit it off immediately and after chatting for 6 weeks, finally arranged to meet in person. He cooked an amazing dinner, I made a fabulous dessert, that first date lasted for 3 days and the rest, as they say, is history. 😉
I have 2 children from a previous relationship. They are now adults – Troy is 34 and lives in Calgary and Ashley is 33 and lives in Vancouver. Ray and I are also grandparents to three cool boys – Eric (17), Jeddy (15) and Calen (11).
For as long as I can remember, I have always had some type of pain in my life, generally in my hips. Even back in my elementary school days, taking part in Phys Ed was tough – a lot of the stuff we did left me hurting so bad for days afterward, I just knew it wasn’t “normal”. I saw doctors, who basically said it was growing pains, but when you top out at 5’2″ as an adult, I tend to think that might not be the right answer. Something else we checked into related to a condition I was born with, called Brachydactyly. I have bone missing in my ring fingers and corresponding toes, which makes them much shorter than they should be, and there’s improper knuckle formation as well. But, no…that didn’t seem to add up either, so basically, doctors had no answers and I was left to deal with it.
I learned to cope with it – it wasn’t agonizing or ruining my life, it was just different than what everyone else seemed to experience. Now of course, when I look back on it, I can see that I likely had Fibromyalgia as a pre-teen/teenager and may have been developing osteoarthritis at an early age as well.
Fast forward to adulthood though and the health issues are a lot more complex than “growing pains”. The list is long, but it’s all a part of who I am:
I haven’t had a pain free day in so many years, I don’t think I can even remember back that far. In 2004, I had surgery for severe Gastric Reflux disease, which led to some nerve damage around the sternum area. Over the following few years, I have several other surgeries and hospitalizations, including having my left ovary removed after a cyst burst (2006). Then my gallbladder had to be removed in an emergency surgery (2007) and 2 months after that, my right ovary was removed, again in emergency surgery (2007). Those last three surgeries all happened within 6 months….my body was completely overwhelmed and I went into a major Fibromyalgia flare up that I don’t think has ever completely gone away. My daily pain is generally a 4-5 on the pain scale – and that’s with me taking various pain medications and other drugs, and using pain management techniques. I don’t know if you’ve seen the various pain scales out there that doctors use to judge the level of pain you’re experiencing, but let me introduce you. This is the standard doctor’s chart:
This is the chart that people who suffer from chronic pain prefer to use:
Thanks to Allie Brosh from Hyperbole and a Half for this – here’s the link to the post it originated from: Pain Scale
So, this is the first post of what I hope will be many, to share my journey of living with Chronic Pain and Chronic Fatigue. It’s about living with Invisible Illness and often having to prove that yes, there’s a reason you use a handicap parking pass. And it will become a journey of having a Total Hip Replacement at a relatively young age (haha!), because I couldn’t find a whole lot of personal experiences when I searched Google. I’m the curious sort – I like to know how other people’s experiences have been. I know the clinical stuff…what I want to know is the real-life stuff that patients experience. I’m passionate about that, and I’ll tell you more about that and why in another post. Until then…thanks for reading, and remember…
there is always hope