It's a sad reality that almost every one of us looses our careers, homes, relationships due to hardships brought on by costs attributed to being sick.
Even being Canadian with one of the best health care systems in the world we pay for prescriptions, parking, doctors notes etc. Unless you have full benefits it still costs us Canadians.
I am not complaining at the health care I have received or that you are getting but everything comes at a price. I know my neighbours downstairs in the states have to deal with insurance companies and such. I can't even grasp the concept of pay or arrange payment before being seen. Or treated any less than a person of financial wealth.
Being sick with a rare disease usually, means expensive drugs. Let me give you some examples.
These examples may vary in your area but are similar to what another sick person has to pay. Imitrex, a sumatriptan medication that I hate. It makes me gravely ill with horrid side effects. At a local chain drug store, it can cost $140 per injectable. When using 10 per month, that can add up. It is sold at a local chain warehouse store requiring membership fees for $108 each. My small independent pharmacist gets me a generic brand which runs about $68 ish. This is ONE medication !!! Which I could use 10 per month. Do the math. Now let us talk about another effective treatment. Oxygen. After fighting with everyone to finally get it. Once I finally did, the "d" knee high tanks are $25 a fill. Plus buy the cart $80, the valve $80, the mask $80. (prices may vary in your area). And I can suck back 2 tanks easy on 1 attack. Be chronic and have 3-15 attacks per day every day for life. Not to mention the other medications I take for acid reflux and IBSd creams for eczema that I have. Some of those creams are $80 a tube And then comes over the counter medications like migraine/tension headache pills, my arthritis pills. Holy crap are we done yet? My medication list is minuscule to many. I have friends who have far more severe diseases on top of CH that require a ton more medications to keep them alive. We also split medications, taking half a dose to only feel half better but in fear we can't afford the next dose. Plus also add the cost of medically assisted living devices.(wheelchairs, canes, etc).
It costs so much money to be sick. So if you see me outside and my t-shirt is ripped, my shorts have been sewn together 3x, It is because I can't afford new clothes. I don't eat at fancy restaurants. I can't remember the last time I took my wife for dinner somewhere nice that didn't have paper towel napkins and plastic plates. My story is all too familiar with people who are sick. Not just CH.
I'd also like to add something important that needs to be said. Most of us worked in our lifetime. Some of us very hard. I worked many years sweating my nards off in 110f factories. I made money and I bought myself nice things for my family and myself. This is why I have what I have. Because I worked for it. NO ONE GAVE ME SHIT. So if you see me driving a nice car(yes I am a car guy). It's because I earned it. I paid for it and don't owe anyone squat.(except my pharmacist.lol). I am not joy riding around all day in my car footloose and fancy-free. Chances are like this summer I have 12 solid good days out of the last 3 months. But they didn't see me laying in bed in pain, did they? or countless emergency visits, Dr's visits, neurosurgeon visits, X-rays, Cat Scans. Nope just assumes since I am at a car show in my hotrod life is just grand.
If you see a sick person enjoying something they acquired. Live and let live. They deserve it way fucking more than you do. They/us are taking advantage of something that you most likely take for granted.Or maybe just maybe they skipped taking the expensive medications for that month, chose the generic ones so they could afford to see a movie or something. Sadly some think being disabled requires a wheel chair.
I spoke with a friend who attended the last conference in Texas and asked why certain people did not go etc. His answer broke my heart. "Because people are losing their homes, jobs and need money for food and medication". It is a sad state of affairs when we that are sick choose medication over food or have no choice to choose one over the other. In some cases some of us are homeless. Some have been very fortunate to be able to keep working or had planned for a rainy day. I got sick at 33. Nobody plans at age 33 for a lifetime of rainy days.
I am sorry, sometimes this blog isn't rose colored petals, lovely stories of me meeting famous people. It's a hard reality of being sick. If you want to help someone who is sick, it starts with empathy, not pity. The hardest reality that I have faced is that it kills me inside to try to be normal or like I used to be.
Below is a photo of how you start your day and how my day never ends.