I have shared my diverse health problems last year when I was about to undergo surgery to remove what is presumed to be a cancerous lump inside my right eyeball along with sharing my inability to function normally due to a serious back and neck injury that was sustained in July 2014. Needless to say, the surgery did not go well as they were unsuccessful in removing the lump and my back/neck issues are reaching a somewhat critical moment next week along with a follow up with the cancer specialist at the end of February.
If you wish to read about these in my previous posting, feel free to read my previous post HERE.
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During my last regular eye check up in late 2015, my optometrist found an unusual lump on the inside of my right eyeball. I was sent to a specialist who then referred me to a cancer specialist as it was out of his scope. After further probing and examination, we agreed to remove the lump via surgery as it is most likely cancerous and testing cannot be performed without a biopsy and that cannot be done as it is inside my eye and inaccessible.
I went through with the surgery under general anesthesia and was later informed it was unsuccessful as the surgeon had difficulty pin-pointing the exact location as she did not want to make an excessive cut through my eyeball or pierce the lump (it is very small and in an awkward location). As such, I am to be monitored every few months in case it does grow and surgery needs to be reattempted.
While this is not an ideal situation and my last checkup showed no signs of growth (thus lowering the chances of it being malignant), it is only one of many health problems I face.
Back and neck problems
I have been on Long Term Disability (LTD) since July 2014 and it is not a glamorous life. I had only been working full time for under a year in the financial services industry and with any career, you tend to start out near the bottom of the earning pyramid. This is normally not too big of an issue as I was 24 at time of injury and had faith/confidence in myself to progress upwards. Sadly, LTD benefits are calculated based on your annual income thus it is very small for myself. I often wish I had at least a few years to improve my situation to at least have a more tolerable benefit along with more savings as essentially everything I had invested or saved has been lost over the course of two and a half years along with my old identity as a person.
I used to be tremendously independent and athletic along with a relatively positive outlook in life along with ample amounts of motivation. Sadly, most of that has been extinguished over time as I am often unable to walk for more than a block or two and have to rely on others for sometimes basic aspects of life.
There tends to be a horrible misconception towards people on disability as being lazy/unmotivated or faking it as pain is invisible and cannot be easily measured. However, for anyone who knew me from before, I doubt I would be labeled as any of those along with perhaps my website showcasing my determination to make something for myself while simultaneously helping others.
Presently, I am enrolled in the most advanced Pain Clinic in Western Canada and undergo a variety of treatments to find a solution to my crippling pain. For a while, I was undergoing biweekly-monthly procedures in which they would inject various chemicals directly into my spine in an attempt to block the pain on a nervous level. These treatments are done under ultrasound in order to guide the needle in the tiny spaces of my spine and is very painful as this is done without the aid of anesthetic. Depending on the area and how skilled the Radiologist is, it can be quite horrible as the best way I can describe it is feeling of paralysis. While the needle is inserted into my spine and the solution being administered, I feel a horrible crushing sensation that almost feels like suffocation from my waist down. There is a sharp sense of pressure throughout my lower extremities and I cannot move my legs, but the goal is to hopefully identify problematic areas to ideally pave the way for more invasive treatments such as burning the nerves.
Sadly, my 9 or so treatments all proved unsuccessful and while there was sometimes slight relief after a few days of elevated pain, the risks do not outweigh the benefits and has been put on hold for now.
However, this is not the worst kind of treatment I endure as Trigger Point Injections (TPI) are best described as an elaborate form of torture. I have been doing TPI for almost a year now and the general practice involves injecting a saline solution into muscles in order to forcefully release them. These needles can be up to 4 inches in length and they are fully inserted until a violent muscle spasm is induced while sometimes being left in while the muscle continues to spasm. This is then repeated all over my body ranging from my groin, inner thigh, entire back, neck, shoulders, temples, and any other area you can imagine. These needles are not to be confused acupuncture instruments as they are significantly wider and have to deliver the saline solution.
These weekly TPI procedures are somewhat bloody and leave horrible bruises all over my body that often do not heal before the next treatment along with being the most physically painful experience I will probably ever endure (the administering doctor likens the level of pain to giving birth as both involve violent muscle contractions). In fact, these muscle spasms are so violent that the needle is sometimes bent while inside me, but thankfully never break as they are designed to bend when subjected to extreme force. My uncontrollable screams can be easily heard far down the hall in the waiting room and it breaks my heart to see my mother cry after my treatment. Depending on how extensive the injections were, my functionality may not return for several days and am mostly confined to my bed or a chair while I wait for things to settle down.
In addition to these more invasive procedures, I see a Physiotherapist, a pair of Traditional Chinese Medicine doctors, and group sessions for a variety of different purposes, along with potentially future psychiatrist/psychologist visits to combat my crumbling mental health. Thus, I do take offense when strangers claim I am not trying hard enough.
Now, I am well aware that Canada has universal healthcare and it is great, for probably 99% of the population. Your acute problems are covered by Medical Services Plan (MSP), walk in doctors, and ER in hospitals, but are left to fend for yourself long term. What further exasperates the financial hardship is most medical costs are tailored around insurance claims so they tend to heavily gouge you.
This level of gouging is widespread as the clinics often presume an insurance provider will pick up the tab, but that is not always the case. My LDT provider only pays out the tiny monthly benefit as they are no longer interested in trying to pay for additional treatments (they did for a period of time but I believe they lost interest when they did not work and have had my case manager changed probably 5 times now). As such, my slim resources are already overextended and there is too much month left over at the end of the money.
To make matters worse, the Pain Specialist who oversees my treatment tells me all of this is not working and that there is one major procedure left and then it is simply acceptance for pain-filled life. This news came in early January and it is never a pleasant experience to be told your life could be somewhat over at the age of 27, or at least the life I used to know long ago.
The final proposed treatment is Lidocaine Infusion and essentially involves me being hooked up to a machine for several hours and having an anesthetic continuously pumped through my bloodstream. The goal is to hopefully reset/numb my entire nervous system so I can attempt to move and function with a diminished perception of pain. It will ideally enable me to begin to move like a normal person again while continuing my other therapies. The main benefit is the diminished pain, but it does not work in every individual and often requires repeated infusions long term.
Now, the hospital/public health system does offer this procedure; however, there is a 3 year wait list and I have only been on it for about 8-9 months and there is no hope of enough cancellations to expedite the process.
Thankfully, the pain clinic I am enrolled in is the only facility in my Province that offers this service, but is private pay only. Due to this exclusivity/scarcity of this service, they wish to charge an exorbitant amount of money for a 5 hour infusion.
Now, $1,800 is for a single treatment, there is no refund if it fails or has to be stopped prematurely due to a health complication. So this is essentially a massive gamble of 4.5 months worth of food for something that MAY work and has the strong probability of requiring many follow up treatments.
I have inquired into the sheer cost of this procedure and they cite nurses, equipment maintenance, and College Accreditation as the Lidocaine itself is rather inexpensive.
However, doing some research, a private nurse would cost perhaps around $50/hour and this procedure requires at least 2 to be present so the numbers simply don’t add up and it is a massive cash grab from the desperate. I am well aware that monetizing the disabled is a lucrative industry as we lack options and often times hope, but I am tired of suffering to simply pay for someone’s salary.
I am well aware that $1,800 may not be a tremendous amount for some individuals, but for myself, it is a monstrous sum as my monthly benefit does not even come close to covering this amount. However, I still plan to go through with this on February 21st as taking the chance now is better than waiting another 2.5 years as if I am able to get better, I can begin to rebuild my life.
I know that crowd-funding websites such as GoFundMe are utilized for life-threatening medical expenses and donation goals on Twitch for the more fun/happy things like a new PC, recording equipment, etc. and I am not sure how to place my situation.
While not life threatening (barring bad news from the cancer specialist), I am not doing well. My life is on a slow decline and it is challenging to watch my peers succeed and fulfill their dreams while I struggle to walk to the bathroom without excessive pain. This is probably why I am loathe to share anything about my personal life as it will probably come across as negative and angry.
It can be hard to figuratively put yourself in my shoes (or anyone else’s), but my life is mostly filled with pain and continued suffering with no freedom to pursue activities outside of PAD or this website. I do not know how to properly introduce myself at family functions when meeting extended relatives or family friends. I am not sure as to who I am as I lack an identity and that is something hard to cope with as most people attribute their sense of belonging to their marital/family status, hobbies, friends, or occupation.
How can you help
For the past several months I have been averaging over 10,000 website views every day (passed 2.4 million total now) and if each of those visitors disabled/white listed me for AdBlocker, it could make a difference from a monetization point of view. Granted 10,000 is small when compared to the most heavily viewed websites on the internet, but even if I could squeeze out an extra fifty dollars, it would make a massive difference in the long run. The same applies to my YouTube channel (700,000+ views now) and Twitch, but due to the sheer size of the internet, it is hard to make even a small income stream as there are channels that pull in millions of views per video.
Many people are subscribed to Amazon or Twitch Prime and this actually allows you one free subscription to a Twitch streamer of your choice that renews every month. While the subscription revenue may appear small, it is simply a numbers game for me as I do reach thousands of people. You can find my Twitch Channel by clicking the link and clicking the subscribe button and selecting Amazon/Twitch Prime.
While the above two methods are amazing and can be done at no expense to yourself, other readers have asked about a more direct avenue of support.
Presently, my PayPal is linked through my Twitch stream in order allow you to leave a personalized message. I still receive the same amount of money, but the optional message is nicer.
I have also decided to make my donation goal on my Twitch my first Lidocaine treatment cost so you can keep track of my progress there.
Patreon is essentially a GoFundMe to support content creators (such as musicians, artists, etc.) on a monthly basis and is probably more suitable for what I do here. I have been tinkering away on my Paetron page for a few weeks now, but should probably ask for more user input as to how to better structure the reward tiers and any input/feedback is greatly appreciated.
I have always believed in a practice of transparency and simply wanted to share my life situation as events are beginning to escalate in the next few weeks and it may or may not have a negative impact on my content creation in the short term.
Reading over all of this makes me aware just how frustrated/angry I am at my own situation, but putting my thoughts down into text has been surprisingly therapeutic. While my problems are unique, it does not invalidate any of your own struggles and I wish to simply vent and share my situation with the people who I feel close to.
Thank you for your time, understanding and compassion,