The Most Important Blog of my Life

farmandadventure (56)in #steemit • 7 years ago

Challenges, whether they originate from yourself or some other source, are what keeps us striving to be better people. In our 15 years of marraige, my husband and I have seen some challenges for sure.

But five years ago, my husband received the most challenging diagnosis of his life: Ankylosing Spondylitis (ankill-oh-sing spon-dill-eye-tiss). This, my friends, is not the kind of challenge you want in life. AS, as it's called for short, is an autoimmune disease that affects the whole body, but focuses on fusing your spine and joints so you cannot move anymore. This means that at some point, your spine and ribcage is like a welded cage that cannot expand and you can't cough, sneeze, or breathe properly. As an added bonus, it also treats your soft tissue like an enemy and tries to destroy it.
In five years, my husband has been in ICU twice, 3 major surgeries, lost 9 inches of his intestines, and the eyesight in his right eye. He can no longer stand up straight, look up, turn his neck side to side, or straighten his arms. The daily joint pain and spinal fusion pain is crippling. He also lost his career as a Crime Scene Analyst as a sworn deputy due to the physical limitations this disease inflicts. I had to sell my wedding ring just to keep our home.
In order to supress the immune system, since it's the immune system that has gone haywire, doctors prescribe a duo of methotrexate (chemo) and a biological called Enbrel (a tumor necrosis factor TNF blocker). The Enbrel allows him to move and lessens the pain. The chemo keeps his immune system from attacking. Even an ant bite can be the match that starts a wildfire flare-up! He describes the pain as "shards of glass grinding in my joints".
Without insurance, these drugs together are $4300 PER MONTH. The Enbrel is packaged in a Sure-Click pen like the now infamous EpiPen and is the lion share of the cost at $4000 PER month, or $1000 PER pen.
So while we have always found challenges to be a great motivator, we have found this one to be more like a physical, mental, and financial gladiator, willing to fight us 24/7 and even on weekends and holidays. I cannot work outside the farm because my husband needs me and the farm needs me and the kids need me. But the husband and the farm and the kids need money. So I began growing vegetables, selling eggs, and selling pastured meats to help. This is a good plan, but slow as you can only sell these things when they are ready. Aha! I'll make YouTube videos and see what happens. Again, a slow process for a homesteading home schooling family with no WiFi. Then there's Steemit...
What I have found in steemit goes far beyond what I was hoping to get, namely, money for my family. What I have found is a quickly growing community of people who CARE and have offered some words of comfort. Honestly, I've been too "badass" my whole life to need anyone's comfort. I've always been there for others in THEIR time of need. "Ain't nothin but a thing and a chicken wing" I'd say.
But this time is different. This time, there has been no magic phone number, doctor, insurance company, foundation, or club that has wanted to help. Sure, people have tried, but they run into the same thing we do (beaurocratic red tape) and give up.
Thoughtful Reflection.jpg So now, I spend much of my day on steemit. I have always loved writing so blogging feels like slipping into warm, cozy slippers on a cold day. I am hoping to be able to provide for my family on some level while I still grow the farm. I can take care of my husband and home school the children. I would SOOOOOOO appreciate it if you would help us out by upvoting, resteeming and following. I do try to provide value in each post, so I won't waste your time. Thank you and STEEMITFULLTIME!
Special thanks to @aggroed for being such a guiding light and kind soul ❤