The story of Samantha
I am resilient!
Abusive childhood – check
Abusive 1st and 2nd marriages – check
Homelessness – check
Depression – check
1st 26 years of my life, I lived in abusive homes and situations. 1st 40 years of my life, I dealt with abuse, but not in my home. During my early adult years, I lived in motels, on porches of people I barely knew, in rooms of old boarding houses, in my car, and more. By 22, I had three small children depending on me. Tough stuff, but I worked hard to get myself out of poverty and to give my children a better life. I graduated from college just a few months shy of my 40th birthday. Life was finally comfortable. Â
Around 44, my health started getting bad. I was struggling with weakness, exhaustion, pain, and more. I will never forget my husband telling me to make an appointment and then driving me to the doctor and telling me to do whatever the doctor says. If you knew him, you would understand….not his normal personna. We were thinking take some meds and feel better… Nope.
Within 3 years, I saw 18 doctors, had multiple diagnoses, including IBS, Fibromyalgia, Chronic Sinus Infections, Severe Allergies, and Medication Sensitivity. No doctor was able to fix anything. It was like throwing darts at a dartboard with a blindfold on. “We can try this, it might work.” I had a few surgeries in hopes of fixing issues. And somewhere along the way, I started seeing these spots – large black spots – that scared me. I saw a few more doctors just before my 48th birthday. A neurologist saw something off in his “intake visit” that didn’t seem really connected with my “spots”. He realized that my balance wasn’t what it should be and that I had loss of sensory to touch in my feet. Hmm… no wonder I fell down two steps of a marble stair case and could have sworn the step was there when I stepped down…  It was a fluke, a miracle, a dart that actually hit the dartboard. Â
The neurologist performed several tests and over the course of 6 months found small fiber neuropathy and this other disease….. CIDP. What is that? I had never heard of it and couldn’t pronounce the long name or even remember the correct order of the acronym. Chronic Inflammatory Demylelinating Polyneuropathy. Wow, a mouth full… After reading up on it – what little we could find, we found a great way to explain in layman’s terms what was going on. My immune system is attacking the lining of my nerves. It recognizes it as an intruder and is eating away at it. So I have some exposed nerves and some “sleeping” nerves. Â
How do we treat this? IVIG – immunoglobulin into the veins is one of the only FDA approved methods of treatment. So we start there. I feel a little better, but the side effects are horrendous. We try a different IVIG drug and I get worse. Now we are doing SCIG – immunoglobulin into my fatty tissue…. this means 4 needles into my stomach or legs once a week to pump the plasma and drugs for about 80 minutes…. and I do it myself. Yep, working as a nurse now. HA! But wait – is this a cure? Nope. And no guarantee that any of this is working. In fact, as my immune system is out of whack, other things go awry. The latest is arthritis and bone degeneration and bulging discs. Headaches, sinus issues, and more. I have to be careful when using sharp knives. I am very limited on driving. I have given up walking through craft fairs, going to any event that requires lots of walking or standing.  My world has shifted from being the strong one to being dependent on others…. and from climbing the ladder at work to being happy I have a job. Tough stuff, but I am resilient.
What can you do? Learn about some of these rare diseases. Recognize that just because you don’t understand what someone is going through does not make it fake or not real. Accept people for what they can do. And most of all, love people through the struggles.
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