Hello friends, it’s been a while! A long while, to the tune of about 9 months or so? No, I did not have a child in that timeframe- I’m fixed and almost 51 for crying out loud! I wish I could blame it on covid but in reality, that was only a very tiny part of it.
This blog won’t be about that. I feel it’s important to mention it, yes, but it’s not in any way the focal point of anything in my life. Other than wearing a mask, it’s not impacted my life drastically, as of yet. I had already been living life cautiously since my cancer diagnosis 3 years ago, washing hands, disinfecting, keeping a safe distance from the general public. I’m also an introvert, so although I do go out for social situations, most of my outings were yoga or shopping related. So for me, all that changed was that I no had yoga class to go to. To be honest, though, I’d already turned my back on yoga at that point, to a certain degree.
What changed me and left me grappling for a sense of “self” was my near death in December 2019 when I went into keto-acidosis. As a result of my immunotherapy, my pancreas stopped working and my blood sugars went sky high. I know I’m lucky to be alive and I try to remind myself of that whenever I get bitter about now being an insulin dependant diabetic. Suffice it to say, between that and immunotherapy, I’ve gotten over my fear of needles.
I felt betrayed. I did so much to stay healthy and I was in excellent physical and mental condition. I also payed it forward by donating my time and teaching chair yoga to people aged 50+ in my community. But bad things happen to good people every day, right? Yes, that’s oversimplified and it took me many months to just summarize it in that sense, but it’s true. Shit happens, deal with it, move on, otherwise…well, really, I’d be wasting the very life that I struggle to hang on to.
But I did turn my back on yoga for a while. I was supposed to attract good karma, not bad. It took a while, but eventually I turned my views around. Had I not been doing yoga and in excellent physical and mental health, it’s my feeling that I would have died in December. Hence, it is because of yoga that I am still here. Because I was strong, my body was able to endure what it went through and because of my mental health, I was able to claw through the darkness that would often creep over me, and find the light to emerge.
My mission? My “dharma”, duty, my calling? To spread that light, in some fashion.
A couple of years ago, when I came across the term “empath” and had that “AHA” moment, “This is what I am!”, I accepted and embraced my duty to be a healer. But how? How does someone with cancer, a thyroid issue and now a diabetic (not to mention asthmatic) do this safely during these covid times? It took a while to figure out but now I’m excited as I embark on my new journey, my metamorphosis, my duty, my re-invention of Self.
Anyone who follows me on my twitter feed @judyvolhart had a teeny hint the other day regarding the project I’ve been working on, when energy permits. As I work on putting all the pieces together and staying motivated and pushing aside the tiredness that comes from learning new things, new systems, I scribble furiously in my notebook to keep track of all the ideas racing through my head. I am encouraged that something in life still motivates me to be a better person.
I still struggle with bitterness and darkness, as I know so many people around the world currently do. This is hard for me as I’m usually a very positive and cheerful person. Who is this new me? Was she always there?
Returning briefly to the topic of this pandemic, I think we can all agree that it’s given us all a chance to have time for important things like family, to slow down, and to examine and feel comfortable with our own thoughts, question the legitimacy of some of the friendships/relationships that we have and, perhaps most importantly, re-examine our own selves and if we are happy with this Self.
I’ve seen friends turn on friends, hypocrisy, selfishness, sadness, blatant idiocy, rudeness and out-right assholes. On the flip side, I’ve also seen kindness, generosity and positive impacts on our planet.
As an author, being in the public eye- and being a yogi on top of that- there’s an expectation to comment on events that shape the world. As an empath, this is something I actually usually avoid. For my own well being, I seldom follow the news or get embroiled in political or inflammatory debates. It’s not my thing. It doesn’t have to be my thing; it’s not my journey.
And so I resume my dharmic path. I embrace it, and I look forward to sharing it with everyone. I hope to have it all in place by my 51st birthday, which is September 15th. In reality, even as I say that, I feel the self-imposed pressure and question, “Why am I doing this?”
My answer? Because I must. I had to find a way of helping others while still keeping myself safe. I have to fulfil my duty as an empath, yogi and healer, even if it scares me to death and the mere thought of re-inventing myself, yet again, makes me tired and I just want to lie down and sleep. I’m also a bit stubborn and I never expected to be the type of person to sit around and do nothing. I’ve done nothing now for a number of months- and that’s okay. Sometimes, we need to do nothing to become whole again. Once we are, it’s time to help others.
Peace, cheers, and to good health for now my friends and readers. Stay tuned for more as everything slowly falls into place. Most importantly, simply stay safe, happy and positive.
Every few months, it happens. Despite having the skills to guide myself through it and to navigate around it, I find myself sucked into the black abyss of torture that our minds tend to inflict on us.
Because I know how to avoid it, it makes it all the more frustrating. I know it’s nonsense, yet I helplessly allow myself to fall into its grasp.
Since I normally have a very positive attitude, when I have a meltdown, it tends to take my family by surprise. As I’ve written before, I usually have my shit together. I help others get their shit together!
Yes, I have cancer. Yes, it’s stage 4. Yes, the past couple of scans have shown a decrease in the size in my lungs and, recently, my bones. But yes, whenever it’s scan time again, my nerves get the better of me.
I almost conquered it this time. I tried various breath techniques, then a yin yoga practice for anxiety, for which I switched out some yin poses with restorative poses, then more breath work and a positive affirmation guided meditation.
And yet, I allowed the doubts to sneak in.
I had travelled an hour for my immunotherapy treatment that day, only to be told it was cancelled. No one had called me and I couldn’t pin anyone down with a definitive answer as to why. I had my oncologist appointment the next day, during which I knew I’d be getting my recent scan results.
Logically, I knew that the immunotherapy was likely cancelled due to my recent colitis attack and that the doctor wanted to make sure I had healed from that. But, my mind insisted on thinking that there was something bad in the scans that triggered the cancellation. I fought it, but in the end, it won, and I was convinced that the cancer had spread.
I know that one day, this will be my reality. That’s what really sucks. The day will come when I’m given that news. It could be at my next scan in 5 or 6 months, or in 5 or 6 years, or 15. But the day will come. Every time I am waiting for my scan results, I come face to face with my own mortality.
This is where yoga and meditation have come to my aid. I can usually push these type of thoughts to the far recesses of my mind. Neither the past nor the future exist, only the here and now. For 362 or 363 days a year, this helps me. The remaining days, I’m thankful for Lorazepam.
For anyone suffering from anxiety, here’s one of my favourite breath techniques, alternate nostril breathing (Anuloma Viloma in Sanskrit). This only takes a few minutes to do and helps to cleanse the mind and balance the right and left sides of our brain.
I was taught to inhale for a count of 4, hold for 8 and exhale for 8 and this is how I still do it. This article mentions holding for a count of 16, which might be a bit difficult for beginners.
At the very core of my core, I knew. Once, I even started writing it but I wasn’t sure where I was heading with it. Would it be a book? Part of my biography, perhaps, or fictionalize it and make it a real tearjerker that would become a blockbuster movie, and then it would win all sorts of awards?
Ha! Yeah, I am pretty good, but I’m not that good!
Yet, my story still begs to be told. Its voice demands to be heard. I feel that in order to fully move forward, I have to write it, but also know that in doing so, there will be many tears involved. Not just mine, but friends and family who might read this.
You see, I usually have my shit together. I pretty much always have. Even before I got my official diagnosis of kidney cancer, I already suspected and had warned my boyfriend. When the doctor confirmed it, he cried, I comforted him. “It’ll be okay. They’ll get the cancer out and life goes on.”
Well, it wasn’t really that simple. What I didn’t anticipate was that my diagnosis would be stage IV. How does one go from being completely fine one day- in fact, feeling better than ever- to being constipated, then a couple of months later feeling a lump in your stomach and having some discomfort?
I googled, of course. I was the manager of a health and dental insurance claims department; I was used to investigating things. I researched my symptoms and came up with being impacted, or possibly ulcers. Perhaps even both.
I went to a walk-in doctor clinic, discussed my symptoms, was prescribed a laxative, but then also sent for a precautionary ultrasound. She wasn’t completely sure it was an impaction. She could feel my lumps. I could see the confusion on her face. I’m an empath, therefore I am very good at reading people.
Days later, I could tell by the ultrasound technician’s face and the tightness in his voice that something wasn’t right. He asked me how long I had been in pain and looked confused when I replied that it had only been about a month.
A few more days passed before my general practitioner discussed the results with me, advising me of a mass in my stomach and the general size of it. I was then referred to other specialists and underwent a CT scan.
By then, my research took a different path. It must have already been mentioned to me that the mass was attached to my kidney and I find it strange that I can’t remember this detail today. There’s so many weird little things that I do remember, but then important chunks of information that I don’t.
In any case, I knew going into the appointment with the specialist that it was likely cancer, and if so, based on the size, that it was likely stage III. So the diagnosis was no surprise to me. The only surprise was that it was stage IV and that, due to the size of the mass attached to my kidney, it had shifted into my stomach. For those of you that might not know this, our kidneys are more towards our back body and not in the stomach.
None the less, I took the news in stride. I might even have smiled bravely, feeling bad for the doctor, having to deliver this kind of shitty news to his patients. I listened to the next steps, nodding professionally, as if discussing someone else. My surgery date was set for slightly over two weeks later, then I was sent to another section of the Ottawa Hospital for blood work.
An hour later, I was back home in Brockville. I recall having an errand to run and we were at our local mall here in town. I checked my phone and noticed a frantic message, asking me to contact some person I’d never heard of from the hospital, who left me his personal cell phone number to call back. Well, that couldn’t be good.
With shaking hands, I returned the call and listened to the news that my blood calcium was dangerously high and that I needed to check in to the hospital right away. I was annoyed, actually. It would be a one hour drive back to Ottawa, it was already late, I hadn’t yet had dinner and I was hangry. I asked if it could wait until the morning and it all became very real when I was told no. I did, however, get permission to check in to my local hospital instead, only a 4 or 5 minute drive.
Everything from that point on was hell. The countless needles, transfusions, collapsed veins, the horror each time a nurse approached me with yet another needle, more bloodwork. My arms were butchered and I was traumatized by the time I was discharged, almost a week later.
To make matters worse, my dad had passed away the day before my diagnosis.
He was buried the day after I was discharged from the hospital, but I was too weak to travel two hours away to my hometown and I was too pre-occupied with my own horror story to even grieve. To this day, over two years later, I’ve not felt that I’ve properly grieved his death.
A week later, my surgery. I don’t recall being especially nervous. Yes, I was anxious, but more so in the sense that I wanted this invasion of my body removed so that I can then return to being superwoman and get on with my life. I was only 47 years old. I had stuff to do!
Things went well, I was told. They removed my right kidney and the mass attached to it, which was the size of a small roast or cantaloupe. They scraped out everywhere that it had spread to and there was good news that it hadn’t affected my vena cava. I had no clue what that meant at the time, but was assured that it was a good thing.
No doubt they scraped out some lymph nodes, though I cannot recall. I do have a copy of my records, yet find myself unwilling to read them again. I should, and I know one day I will, but there’s stuff in there I don’t want to revisit.
The only thing that remained were some tiny tumours that had made their way into my lungs. These could not be taken out during the surgery. There were four of them, all spread out, two in each lung. For that, I would be on some form of treatment, if they didn’t go away on their own. There was hope; apparently, there was a chance that they’d shrink away now that the mamma host was removed.
I was a good patient, asking for very little, walking as much as I could in order to regain my strength and be discharged as quickly as possible. I must admit, the morphine was lovely, but by the end of my stay, I was imagining smells that did not exist and couldn’t understand why no one could smell the strong antiseptic odour that I could.
My attitude, at that point, was still “Let’s get this done and over with. Let’s fix this.”
I did not yet know of the poor survival rates for stage IV kidney cancer. Reality slapped me in the face a couple of months later when I had to get copies of my medical records in order to submit them to my insurance carrier to be approved for long-term disability coverage. In my heart, I already knew that I could never return to the stress of work.
My general practitioner received the documents from the specialists and called me in to discuss the paperwork. She knew me very well, knew I’d be scrutinizing every word, and there were a couple in particular she knew would shatter me. She did not want to simply put it in the mail for me to read on my own and I am thankful for that.
That was my initial prognosis. That had not been verbalized to me at any point, but yet, there it was, in the report. Black and white. At that point, three or four months had already passed. Up until then, I still pretty much had my shit together. That is when my world crumbled.
I had foolishly gone to that visit alone and was due to pick my son up from his part-time job and bring him back to Brockville with me for a few days visit. Before picking him up, I pulled over into the parking lot of a grocery store and had a good cry.
He was just 17; he didn’t need to hear this shit or deal with it at his age. He had asked me from the outset to tell him everything, but apparently I hadn’t mentioned the 22 months to him, so obviously I got a handle on myself and managed the hour long drive back to Brockville with composure. Again, funny, the details I do and don’t remember.
At about the same time, I found out that the “spots”, as I called them, in my lungs hadn’t disappeared on their own. I would be monitored for another three months to see if they would grow, and if so, I would then start some sort of treatment for them.
So, my “Let’s do this, let’s fix it” attitude took a nose dive from there. Luckily the cancer centre has great access to free social workers for counselling. The record playing in my head was that I was only 47, how could all this be happening to me?
“The record playing in my head was that I was only 47, how could all this be happening to me?”
My boyfriend is a strong believer in cannabis. After educating myself about it, I have to agree that it has many medicinal benefits and has been used for centuries for medical reasons, well before it became illegal (and now legal again here in Canada and increasingly around the world).
I illegally, at that time, obtained cannabis in an attempt to treat the cancer holistically. Some of you may have heard of Rick Simpson oil or Tears of Phoenix.
If you, or someone you know, have cancer and are contemplating trying cannabis, I invite you to research this further. There are now many CBD and THC varieties on the market.
I had the 70% THC.
My cannabis use was very limited before I tried this treatment, so it took very little to get me high. The initial dose was the size of half a grain of rice, and the goal was to get up to 1 gram of this dark, tar-like cannabis oil per day and maintain that until I had ingested a total of 60 grams over a 90 day period. I tried, I truly did.
I do not remember much of June of 2017, other than the fact that we got a rescue kitten named Bart to help me with my sudden bouts of debilitating separation anxiety. I think after a month, I could no longer continue because of the paranoia and anxiety it induced in me. Scans shortly after showed growth in my lung tumours, so the little I did ingest did not help.
So, here’s the thing; although it is in my lungs, it is still considered kidney cancer- even though my remaining kidney is healthy and cancer free. So treatment is based on what works for kidney cancer and all cancers are treated differently. This is often confusing for family and friends to understand.
In the case of kidney cancer, traditional chemotherapy and radiation are not proven to work, so that wasn’t even an option for me.
We decided on a drug called Sutent, which I started about 6 months after my surgery. It is the first line of treatment and can work wonders, but it’s hell on the system. Despite several months on it, significant hair loss that resulted in having to cut what was left of my hair (see before & after pictures above), nerve damage to my feet, back and neck, sensitive teeth, tongue and dry mouth, and one emergency hospital visit due to a headache so powerful that I thought my head would explode, the tumours grew.
And had spread to my bones.
This, too, was a doctor’s appointment that I made the mistake of attending alone. Because, you know, I was still trying to be superwoman.
The grief overwhelmed me on the one hour drive home. That’s the thing about these long drives, you have time to think and magnify it in your head.
My drive consists mainly of two major highways and I could not safely pull over. I scrambled for Kleenex in the car, tears and snot running down my face, co- mingling, sobs wracking my frail body.
Yes, frail. All my life, I’d prided myself on being strong. Sturdy. Fit. Active.
Damnit. I was doing fine writing this story until I got to this part.
I’m not quite sure how I made it home. I suppose I didn’t really even care if I did or didn’t, but thoughts of my son pulled me through. I could not leave him motherless so young. He does not know this, but perhaps he’ll read these words now. If so, I’m so sorry for any emotional pain he’s had to experience because of me.
Luckily by this point, I had started my yoga and meditation journey. It helped me through many dark days and to regain my strength and sanity. I had watched as my oncologist scribbled treatment options out onto the paper sheet covering the hospital bed in his office and my brain scrambled to make sense of it. I took that sheet home and kept it for reference. I still have it somewhere, but also took a picture in case it got misplaced.
There was this wonderful thing on the market that was gaining popularity and much press. Oddly enough, it had been around a while, but only more recently have we hearing about it. It was my next treatment option; we decided on immunotherapy.
How my oncologist explained it was that cancer cells have this protective shield around them. Immunotherapy helps “open up” the shield, allowing your own system to do what it’s supposed to do; penetrate it and fight the evil shit that invades us.
Yes, I’ve had dark days in the year that’s passed, but luckily very little side effects from the Immuno. I’ve continued to remain positive and I’ve continued my yoga and meditation journey. There’s increasing research that links how the effects of these three things combined can help destroy disease.
Further combine that with Immunotherapy, and great things have happened. At my last scans, the tumours in my lungs were “minimal” and the cancer in the bones have not grown further.
Today, I continue working on being physically and mentally strong. I have become a certified yoga teacher in order to enhance my own knowledge and to be able to do yoga safely due to the nerve damage and cancer that remains in the bones, leaving the bones at risk of injury.
I hope to learn more about safe yoga for various cancer patients and to maybe one day be able to give back to this community.
For now, I practice daily and watch webcasts or listen to podcasts on topics relating to yoga, meditation, eating right, herbs, essential oils- anything that might help me beat this son of a bitch.
My reality is that stage IV kidney cancer seldom goes into remission and survival rates still aren’t the best. But I’ve surpassed 22 months by 7 months already. I’m going strong and I know that every year that passes, new treatments are being discovered.
Yes, I have my bad days, when I’m sad, bitter, or angry. This is at odds with my yoga training, which teaches us non-attachment. We are a spirit within a body that we should not get attached to. But I’m new to this, and I still get angry. I still cry. I allow myself to “feel”, then I let it go, the moment passes. Life goes on.
After my monthly bloodwork and my bi-weekly immunotherapy infusions, I usually wear a superhero band-aid to cover the puncture marks to remind myself: I am superwoman. And anyone fighting this madness is super too, regardless of what stage they’re at in their fight. Yes, it sucks. Life gave us shit to deal with. But we are warriors.
By sharing my story, I hope that I’m able to touch even just one person’s life. To resonate, inspire and motivate.
Namaste. Peace, my friends.
For anyone suffering from cancer, I invite you to read “Yoga for Cancer” by Tari Prinster. Whether or not yoga and meditation interests you, there’s some great information in there about what actually happens inside our bodies.
“Even when we are doing nothing, we are doing something.”
-New Skills Academy
Think about it. How often do you actually sit and do nothing? I mean absolutely nothing, other than the necessities of life that your autonomic nervous system takes care of for you?
Although our various gizmos and gadgets are supposed to make our lives easier, we’ve become slaves to them. Who’s guilty of checking their various social media accounts as soon as they wake up?
Sigh. I know I am, and I hate gadgets! Don’t get me wrong. There’s a time and place for all of them, but when it replaces time spent with friends or the family members you live with, that’s where the problems start.
But, this post isn’t about the whole “unplug” movement. I mean, it can be, if that’s what you take away from it, and it is a step in the right direction.
I’m talking about after you’ve put all your devices away. And, ehem, I’m sure I’m not the first person to note that the word “vice” is embedded there in “device”, right?
Back to my point; you’ve put everything away, and perhaps you’re sitting outside one beautiful morning, listening to the birds, having your morning coffee or tea or warm water with lemon or whatever strikes your fancy. I’m not here to judge. Drink your green goo, if that’s what makes you happy. Because, really, this post is about finding happiness.
Let’s return to our peaceful outdoor setting. Is your mind quiet? Is it at peace? Or, instead of enjoying that beautiful moment, are you mentally conducting your to-do list, planning your day to the last detail, or reliving old hurts, arguments, issues?
So, really, you’re not doing nothing, are you?
I’ve been meditating for just over two years now, in various ways. I don’t pretend to be an expert on the matter, but I do know that who I am today, I owe largely to meditation.
Lately, I’ve been out of whack. I could feel myself spiralling, feeling frazzled, coming unglued. Full moon? That could have something to do with it. But I know myself enough to know that something was going on but I couldn’t quite put my finger on it.
Getting back to our gadgets for just a minute…there I was, on my gadget, scrolling for some meditation music. Sometimes, I like music, sometimes I like nothing. There’s no right and wrong, and don’t let anyone tell you otherwise.
But what was wrong was that I then started scrolling through my social media feed. On my yoga mat. Bam.
This wasn’t me- not the me I wanted to be, or thought I was! Ironically, what made me become aware was a social media ad for an online mindfulness meditation course.
I read the course outline and it was then that I realized that at some point over the last couple of weeks, I’d stopped doing nothing, and was multi-tasking even during those rare few minutes when I attempted to do nothing.
And I felt it.
Of course I signed up for the course. I read the first module at 11:30 that night, in the dark (on my gadget). There was something magical about reading it in the dark, as it truly eliminated all other distractions and I could focus fully. All that existed in that space were the words that I was reading. Words that reminded me to do nothing, to notice my thoughts, then let them go, not to attach myself to them.
This isn’t anything new; I knew this already. My yoga teacher often says those very words at the studio that I attend. The first time he did, during my second time there, I bawled my way through class, and many times thereafter along my healing journey. Luckily, there are numerous boxes of tissue scattered strategically around the studio.
No, it wasn’t anything new. I had simply forgotten. It’s so easy to get caught up in everything that we sometimes forget how essential self-care is. Self-care for your mind.
Do yourself a favour; if nothing else, set aside one day this week where you will try to spend just ten minutes doing nothing. Nothing. Hear the sounds around you, smell the smells, exhale it all out, let it go, and do nothing.
A lot of people haven’t heard of the term Hyper-mobility, or the conditions related to it. Ehlers Danlos Syndrome & Joint Hyper-mobility Syndrome are among these conditions.
EDS is a connective tissue disorder, where the body has faulty collagen. This means that the joints don’t have the necessary connective tissue around them, allowing for easy dislocations and subluxations along with a giant list of symptoms that you’ll find below.
Now, before I bombard you with information about Hyper-mobility, I’ll provide a brief back story on how I got diagnosed with Hyper-mobility Ehlers Danlos Syndrome and what led me to the diagnosis just a few months ago.
I was 18 at the time, completing my yoga teacher training certification. The training was done in spurts of twenty hours every second weekend, for four consecutive months.
I would need the entire following week to rest and recover since I was in the worst pain I had ever felt in my life. I was the youngest person in my teachers class; why did I feel as if my body was being ripped in half, while others twice or even three times my age only had mild discomfort?
“Why did I feel as if my body was being ripped in half…”
I took muscle relaxants, assuming that I was just pushing myself too hard. Co-incidentally, I finally had an appointment to see a neurologist for the chronic migraines I’d had since the age of twelve.
When he asked me what I did, I was so happy to tell him that I was a freshly graduated yoga teacher that I think I almost screamed it!
At that moment, I noticed that something in his face changed; it’s like a lightbulb turned on in his head. He asked me if I was double jointed and again I excitedly replied yes. He performed a series of tests, pulled my skin to see how stretchy it was (yes, seems weird but I’ll explain after) and there we had it, my hEDS diagnosis.
So what is Hyper-mobility?
Being flexible is awesome, right? I thought so too, until I realized this was literally breaking me. I am not saying that flexibility is bad for everyone, just if you are hyper-mobile.
Let me clarify that yoga didn’t actually “break” me. This condition is genetic and was in no way caused by yoga. Yoga was just what led me to realize something in my body wasn’t right.
Those of us with hyper-mobile joints will have joints that extend beyond the normal range of motion for that joint. For those of us specifically with hEDS, this is because we have faulty collagen, which is one of our connective tissues.
Someone without hyper-mobility has joints that act like rubber bands, which can stretch to a certain limit and then retract back to their normal state. If you are hyper-mobile, have JHS or EDS, then your joints are more like string and just kind of do whatever they want. This is also why my skin is so stretchy.
I am one of the lucky ones who don’t experience multiple joint dislocations in a day. I do, however, frequently sublux (partially dislocate) my neck and shoulders at least 50 times in a day.
“I am one of the lucky ones who don’t experience multiple joint dislocations in a day.”
A lot of people with EDS and JHS go their entire lives without being diagnosed. My condition has such a long list of symptoms and complications that all my doctor could instruct me to do was research this condition to the best of my ability.
For so many years, I went to my family doctor with random complaints and health concerns that either went away in time or were dismissed as IBS and hormonal changes.
This is the case for so many who struggle with EDS and JHS; they simply have so many symptoms that seem like they couldn’t possibly relate to each other.
In my opinion, this isn’t a rare disorder because not many people have it- it is a rare disorder because it just isn’t known about or diagnosed. I was extremely lucky to have a specialist so knowledgeable in EDS. He assured me that there were many like me in my hometown of Ottawa, Ontario, who also struggle with this condition.
I will list the possible symptoms and side effects of JHS and EDS. I’d like to note, however, that if you decide to research more, there are 13 types of EDS, one of them being the hyper-mobility type, which I have. Hyper-mobility does come with almost all 13 forms of EDS though, as they all relate to the faulty connective tissue, collagen.
By sharing my story, I hope to bring awareness to this condition, and hopefully help someone who thinks they may be in a similar situation.
JHS and EDS symptoms:
Joint pain and stiffness
Dizziness, or increased heart rate when standing (Diagnosed as Postural Orthostatic Tachycardia Syndrome)
Loose or unstable joints that dislocate easily
Mitral Valve Prolapse
Recurrent strains and sprains, these also feel more intense for those of us suffering from hyper-mobility (I only ever had 1 dislocation in my life, but strains and sprains were and are a daily thing)
Redundant skin folds on the eyes
Bladder control issues
Fainting or feeling the need to faint, this can sometimes look like a seizure
Dental issues are more common
Random spells of flu – like symptoms
Constant muscle spasms
Hormonal imbalances, heavy and painful menstrual periods (for women)
Locking or clicking joints
Slow healing wounds
Hernias and organ prolapse
Scratches that can easily tear skin or leave friction burns
Lack of muscle tone, because we are using our flexibility rather than strength
Risk of pregnancy complications
Stretchy, loose, velvety skin. (I describe mine as baby skin)
Skin that bruises easily (I cannot count how many times I had bruises & hickey looking marks that were not caused by any type of injury.)
Digestive issues such as heartburn or constipation.
Somehow, I feel that I still haven’t fully explained EDS or JHS to you, but I don’t think I ever could. I am still learning about this condition myself. It is so complex, and I think that is why it’s so under- diagnosed.
If you think you, a friend, or family member is hyper-mobile, then do some research on it and talk to your doctor. Below are some links to the diagnostic criteria for Hypermobile Ehlers Danlos Syndrome as well as the Beighton Test, which is used by doctors to determine hyper-mobility.
Although this condition is rare and will never go away, I don’t stop moving and neither should you. I am continuing to learn safe and healthy ways to move, pain free.
I still practice yoga, just in a much safer way for my body than I had previously been doing. My mantra is “Less is more. I will get stronger everyday.” I encourage anyone suffering from EDS or chronic pain to remember this, and use this mantra in your daily life.
A big thank you to Grace for writing, and sharing, her story with us today. If you have a story you’d like to share, please contact Judy via the contact page or feel free to share in the comments section.
Do you have a happy place? A physical place that you can retreat to every day that grounds you and makes you feel peaceful?
In today’s ever-hectic, plugged in, I’m always connected world, what do you do to find balance?
I’ve had people tell me they don’t have an extra room or space, but guess what?It doesn’t have to be anything elaborate. It can be as simple as rolling out a yoga mat in a quiet corner of a room, sitting on the floor on a soft, comfy cushion or blanket, or lounging in a favourite chair. You can even just escape to your bedroom for time alone with a nice candle and gentle music, sit on your bed, close your eyes and just breathe.
Here’s the thing; closing your eyes doesn’t mean that you have to meditate. While I, personally, am into that and highly recommend it, if you’re ready for it, you’ll find it in your own good time. I’m not going to be the meditation “pusher”! (“Pssst, wanna meditate?!”)
But, in the meantime, you can just close your eyes and be “present”.
What does that mean? I speak from experience, you know. I was the go, go, go type, look at me, I’m multi-tasking and so in control and blah blah blah, yeah, I’m balanced. I’m superfu**ing woman.
I’d close my eyes and what would I do? Go over everything that transpired that day, or days before, think about the next day, mentally compose my to-do list, or compose entire email responses in my head, then open my eyes and…and what? And nothing, really. Why? Because I was not present in that moment.
I was reliving the past or trying to plan the future.
So what does it mean to be present? I’m sure if you google it, you’ll find a plethora of information. Hey, let’s do it, for fun. Bam, done. In mere seconds, I found over 2.3 billion posts using just the words “be present”. So this present stuff must really be something, right?
It is, once you get the hang of it. It took me several tries to find what worked for me and what did it was my birds. Yes, mine. I feed them, talk to them, fill their bird bath with water, therefore they are mine. They are free to come and go, but they choose to stay. Mine.
One of my happy places is pictured above. It’s not a professional photo, maybe it’s even a bit blurry. That’s okay, my life isn’t, nor will it ever be, picture-perfect. I love to sit outside in this spot and just listen to my birds. That’s how it really started for me, before I even started meditating.
That’s all. Take in the sounds around you. The chirping, that one, crazy bird that’s always off key, the wind chimes jangling, traffic from the near-by highway 401, geese squawking as they fly overhead…they all blend together in a wonderful symphony.
Be present. It means not thinking of yesterday or even of a few minutes ago, or tomorrow and beyond. Notice the colours playing behind your eyelids, your breath, even the sound of someone coughing close by. Acknowledge the sounds, let them go, just sit quietly and observe. Let it all come and go, like waves gentling rippling along the shoreline. Let your mind and body recharge, your heart rate slow down.
Just enjoy that moment. Nothing more. Your mind and body will thank you for it.
Not your thing but you feel you need something? Try this easy coffee/tea “meditation” that you can even take a few minutes for at work. Bonus tip: it even helps clear blocked sinuses a bit by inhaling the steam.
Go ahead and make whatever you normally make- see how simple that is? You start with what you’re already doing. Whether you’re sitting at home with it, or at work, just close your eyes before you even take that first delicious sip.
Hold the cup under your nose like a mini steam bath for your nasal passages. Inhale deeply, expand you lungs, take in that wonderful aroma. You might even feel your mouth water. Your tongue is practically trying to escape your mouth so that your taste buds can have their fix. Hold on. Exhale, deeply. More. Gently let all the air out of your lungs. Pause. Hold the breath for a heartbeat, then inhale the aroma again, deeply.
Do this about three times, just enjoying the scent, the heat, those few precious moments that you have. Then, finally, have your first sip. Savour it. Keep those eyes closed! Another deep breath, another deep exhale, another long sip. Relax with the steam, savour the flavour, notice your breath.
Guess what? You were in the moment. You were present. I hate to tell you this….but you even just kind of meditated.
Namaste, enjoy the day, cheers, my friends.
What’s your happy place? Please share and tell us what works for you.
Meet Bart, our rescue cat. Actually, I think we rescued each other.
He’s two years old and we think he’s an American Bombay. Bart is extremely friendly and enjoys yoga and meditation (you’ll see him in a lot of future posts), chasing mice, and watching the birds and chipmunks. We’re a lot alike- except I don’t chase mice. In his spare time, he likes to sleep on my feet, or in a cardboard box.
From Bart and I, have a Furtastic Friday!
*Photo courtesy Gracie MacDonald
If you’d like your special pet featured on a future Furtastic Fridays post, please contactme.
Once my fingers start typing, what unfolds surprises even me at times. It’s simultaneously cathartic, invigorating and exhausting. I think it’s wonderful! How great is it, when we can surprise ourselves?
I wanted to write about how I had retired from writing. I did, you know, for a few months. But, I still had books to promote, and a toilsome website that I felt I had outgrown. The person that created that site years earlier is not who I am today. I wanted a fresh, uncomplicated start, but I was still undecided if a blog was the way to go. Truth be told, I wasn’t really sure what a blog was.
Then, I listened to a webcast by singer/certified Kundalini and Naad Yoga Instructor Simrit. There’s two simple things she said that resonated with me; it was about finding and empowering your voice and owning your vibe.
It should be, but yet, so many struggle with these two things. People are afraid to speak up, or haven’t developed their own voice, their own vibe, afraid to be thought of as the weird one, the one who’s different. What if my ideas suck, or I sound or look stupid, or I fail, right? Does this sound familiar?
Then there’s those that don’t feel comfortable in their own skin because they’re so engulfed with trying to emulate someone else and “keeping up” with all the latest trends.
Hopefully along the way, these people stumble onto something that grounds them, opens their eyes and makes them see life with new eyes and experience it with a new mindset. Something that makes them see their true self.
How many people can say they know their own voice and vibe? How many have taken the time, effort, guts and raw emotions needed to strip away all the false, outer layers and confront who they really are?
It’s not always nice. We have this image sometimes of who we’d like to be, and maybe we’ve even convinced ourselves that we’re like that. When you take the time for some introspection, you have the opportunity to marry reality with self-perception. You might identify some areas that could use an overhaul, and you can take that empowering decision to make those changes.
I’ve had ample opportunity over the past two years to dig deep (we’re talking rock bottom) into the cob-webbed recesses of my mind to explore who I am- who I really am. I’m not perfect. I never will be, nor do I strive to be, but I’ve always thought of myself as a kind person.
Regardless of my vast professions over the years, I always aimed to be kind. My work may not have always allowed that aspect to shine brightly, but at my core, if nothing else, I knew I was kind and I strove to surround myself with like-minded people.
I’ve had to re-invent myself. Many of us have been there before, or will be at some point, to some degree. That’s life, folks. Some of us are faced with having almost everything stripped away from us, having to dig way down within to find who we really are- our voice, our vibe- and rebuild from there.
I was a manager, an author, a wife and mother. I was dressing sharp (ish), trying to find time to exercise, stay on top of work and housework. With whatever time was left, I would snag a couple of guilt-ridden hours to write, and try to carve out time to keep in touch with extended family and friends.
I was one of the few, or perhaps the only, managers at work who did not handle work emails or matters after I left the office. In addition, I usually left at my designated quitting time. In my mind, I told myself this was work/life balance. I was on the right track, but it was hardly balanced. I was headed for a burn-out and knew it, but was powerless to prevent it.
“In my mind, I told myself this was work/life balance”
While I was teetering on the brink, I went from feeling physically great, to being constipated, to then noticing some lumps in my abdomen all in a four month span.
After a series of doctor visits and diagnostic scans, it was confirmed that my kidney had moved down into my stomach due to the size of the tumour that was attached to it. I was diagnosed with stage 4 kidney cancer. I was 47 years old.
I lost my right kidney. Four little tumours that had spread to my lungs remained- and still remain- in my body. I had an ugly scar right down the middle, and I was the weakest that I’d ever been. I was on disability leave from work, and I was living an hour or more away from my son and friends and other family. In my heart, I knew I’d be unable to ever return to work. The only part of my identity that I thought I had left was being an author, but I was uninspired.
So, what else was there?
I was still a kind person. Despite the anger, bitterness, sadness, anxiety and the “why me’s”, I was still a kind person.
Let’s fast forward a little. We’ll save the details of those gruelling two years for another time, perhaps. I will never say that cancer was a blessing in disguise, but it has given me the opportunity to discover meditation, and in the process, myself. Once I was strong enough, I branched out into the physical aspects of yoga, and I continue my journey of rebuilding a better, stronger and kinder ME.
For this reason, I will still write. I have found my voice and my vibe and I hope to somehow touch the lives of others, through writing, to help them find theirs. What’s on your mind? Share you voice, share your stories. THIS. This is why I chose to start a blog. My voice. Your voice.
So, no. This is not what I thought I’d write about. But I love it.
Cheers, my friends.
If you’d like to share your personal journey, please contact me.