Renee, I want to thank you for sharing your life with my readers, it really means a great deal to me. Your outlook on life will help a great deal of people to understand their own mental stresses and that they're not alone while going through those painful feelings!
Renee: “You're very welcome Martin, I just hope my life can assist others, especially if it helps a person to understand that their mind can sometimes play tricks on them, and also to help people understand that it’s important to find a release in any way shape or form.”
So what is the Illness in question?
To date, Renee has major back pain and numbness throughout the left side of her body, which specialists have speculated that it's in part due to a form of arthritis within her spinal area. Specialists aren't exactly sure what else is causing the intense discomfort she feels, especially when she sits still for long periods of time. Renee suffers from stiffness, joint/muscle spasms and many other symptoms which manifest at different times of the day depending on the activities.
“Some of it is Arthritis. It's unclear to me if all of the pain comes from the arthritis. I'm patiently waiting for the in depth follow up, but my patience is wearing thin. It sure doesn’t help that I was misdiagnosed, but it's the neurological symptoms that are the real issue. It wasn’t until the neurological aspect of my illness started that I had to really start limiting myself,” asserts Ms. Luffman
Renee explained to me that sitting for too long actually induces more throbbing and numbness than sometimes bearable. Renee is constantly forced to move around and must prevent herself from remaining in one position for long periods at a time. To combat this, Renee makes it her daily mission to keep busy around the house in order to feel somewhat normal and useful for her roommates, while fighting to maintain the ballance between sufficient mobilty (not enough and the pain is unbearable) and over exertion (too much and the neurological symptoms flair up).
“I can't decide what is more frustrating; the fact that I am quite literally not in full control of my mind & body at times because of my every day pain, or the fact that I've gone a year and a half under the assumption that the cause of the pain was just a trivial, mundane thing,” explains Renee.
“You see, the symptoms are getting worse. I constantly get tingling, numbness and muscle weakness throughout my entire body, but for the time being, the pain and discomfort seems to be mostly concentrated in my left side. I'm now using a cane when I'm out and about, because I was getting to the point where I was afraid to go out, for fear of falling and hurting myself. And my short term memory is now also being affected. It's sort of like going senile. I can remember things from my childhood, from two years ago, but I can completely forget entire recent conversations ever having happened. I have always had a visual trigger memory, and so used lists to help me get things done, but nowadays, I have to write long hand what the items on the list are, because I can no longer comprehend my own short hand,” adds Renee.
Our health care system needs to change!
Renee has had to endure many months of testing, prodding, poking and much speculation from each medical practitioner she’s seen over the last 2 years. Her specialists had the idea that it might be MS, or something related to the spinal tap, but no one knows for sure. Not knowing can sometimes be the “Achilles Heal” when it comes to the healing process.Far too many patients sit wondering and pondering their demise, while specialists follow the slow, unforgiving process of eliminating all options. One by one, patients have to endure one theory after another, not having closure to move on with their lives and start living with their illness or disability.
Something needs to change within our health system; the stress of going through countless hours at the doctor’s office can be sometimes harder on the patient than the underlining condition itself. Maybe that’s why so many people choose just to suffer in agony alone and without outside assistance.
Why do we ask patients to spend countless hours; managing their appointments, following up, ensuring the referrals are completed, finding information about prescriptions, tracking down medical supplies and the many other menial tasks asked upon them by specialists?
"I shouldn't have to fight this war on so many fronts," protests Renee.
Far too many people simply give up on the process since their patience is constantly being tested at every turn. It takes a strong person to see it through to the end. For myself, after 15 years battling our health system, I won't make a trip to the hospital unless I know it's something they can actually help me with. Small aches and pains, viruses and flu's are disregarded and discharged.
There are so many resources out there that the public just isn't aware of. For one, calling the Canadian hotline (1-800-O'Canada) can get you connected with a live nurse to discuss your symptoms prior to visiting a busy, unforgiving emergency care centre. The internet can be a valuable resource if you know were to look online. Some websites online are full of information that can help to narrow your symptoms.
Understand that emergency care centres across Canada no longer prescribe pain killers, nor do they want to prescribe medication until understanding the entire story. Sometimes when individuals have a history of illnesses, it's better wait and see their personal MD, prior to visiting a local clinic or hospital.
Parents with young children are more susceptible to the lure of bringing their children to the hospital for every little bump or bruise. Again, call a local medical hotline to discuss your options prior to subjecting yourself to 4-6 hours waiting in agony, only to get discharged with some baby aspirin.
What are some of the struggles you deal with when it comes to our health system in Ontario?
Renee: “I called my neurologist, whom I've seen once, to book a follow up appointment now that I have a date scheduled for my brain MRI. Not only does it turn out that I can't get the appointment until Oct 30th - that's a full three months after the test, but the Hamilton neurologist can't even refer me to one here in London! My family doctor has to do that, despite the fact that it was a rheumatologist that referred me to the neurologist in the first place! And of course, all of this information comes to me after 5pm on a Friday, so I can't even get a hold of anyone to assist me. Suffice it to say that I threw an extreme fit, cried myself out, and then soaked in the tub for an hr.”
You don’t know how many times I've heard the same unguided decision making process which tends to happen to so many individuals, when their needs are put on hold due to the invisible red tape and layer upon layer of policies.
Practitioners should be able to communicate better between themselves, and especially between different levels of health organizations. They should also understand that their patients needs don’t just stop as soon as they step out of their door. Every person within the medical field swears an oath to help their patients whatever their needs are and should understand there are managerial skills needed to see the process through.
Renee: “As the patient, I've been doing everything right. I went in two years ago when my back started bugging me, went for the MRI- was misdiagnosed. Then, when things got worse, I went and found a better Dr, and went through all of his tests and followed all of his advice. From all of this, I’m now taking fists full of pills every day, and tracking my symptoms changes and growth. Not to mention that I’m also seeing a rheumatologist, a neurologist, going for umpteen MRI's and blood tests. I'm supposed to be resting, relaxing, and getting plenty to eat and plenty of sleep. Someone want to tell me how I'm supposed to eat or sleep when I'm this stressed out and depressed? I'm willing to bet that long term, debilitating illnesses are the number one cause of depression in North America.”
“Strength is just how well you hide the pain!”
Renee: “I recently had several small conversations with different people from all walks of life about "Pain and Strength". One of my favorite sayings since this medical trial began a couple of years ago, has been "Strength is just how well you hide the pain". Recently, I felt weak, because I've been unable to hide the pain. Even if it weren't obvious in the way I sit, the way I flinch as I move to stand, the way I wobble when I've been on my feet for too long, or in the zigzagging steps I take when on any extended walk, it has now started to show nearly every day in my face, and especially in my moods. I don't wish this on my worst enemy, but it might be nice to let the specialists, or even some of those so called 'friends' who keep telling me it can't be that bad, walk a mile in my shoes. Maybe then I'd get some results and understanding. I'm not asking for sympathy, I'm asking for them to GET what I go through and not trivialize the incredible amount of strength it takes to get through every day."
I’m sure we can all relate to Renee in some shape or form. You can get the sense of frustration, betrayal, denial and we can definitely see her patience wearing thin. Renee is among millions of individuals who need to re-iterate mentally every single day - why it’s important to stay positive and happy.
Staying happy is not as easy as some people might think. We all deal with stress and happiness differently on many levels. Some of us crack under pressure, others hide it well and then people like me just brush if off.
Whatever one goes through, we need to remember is that each day we are able to take a breath of fresh air is a lucky one and shouldn’t be taken for granted. None of us know how long we really have to live, and it’s my dream to see that these stories help to inspire others to live a little more, do a little more, helps others in need, understand that there’s worst things that can happen than just worrying about their bills, and to always lend a helping hand when asked.
"I've resigned myself to the fact that I am not likely going to have a Pain Free day ever again. I just ask for the patience of the people around me while I muscle through the pain, the confusion, and the constant frustration that comes with living with a mentally and physcially debilitating mystery illness at the age of 24. No one can make the pain go away, but a good support system can make all the difference when you're staring at a bottle of vodka and getting the urge to make poor decisions," observes Ms. Luffman
I want to thank you Renee for sharing your deep personal thoughts with us, they're truly inspiring and eye opening to what one goes through while dealing with the pain day in and day out. It's my hope that our health system adapts a better "patient managing care" we all hope for as patients - that will be there to better help you deal with your demanding medical schedule. Maybe someday we can make a difference together and make these wishes happen.
Thank you for reading the personal life story of Renee Luffman.
##
If you also wish to have an interview about your own chronic illness or your children's chronic illness, please contact me for more details!
Sincerely,
Martin R. Lemieux
Editor & Author
No comments :
Post a Comment