For a fellow myasthenic in need

Since I’m not in a financial position to help, I thought I’d post a link to a fellow myasthenic’s page to extend the call out to others who might be in a better position. Autoimmune diseases really bite and when you have to battle more than one and have them treated by multiple doctors thanks to no one doctor being trained to treat them all, it becomes VERY EXPENSIVE!

Check it out and pass it on to others in your network.

http://www.gofundme.com/arwmvk

 

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41

Two weeks ago I celebrated my 41st year on Earth. A lot of people tend to see their birthdays as just another day. I personally see the day as a sign of having survived another year of chaos and mayhem and not ending up locked away in some facility (prison or a mental ward). Year 40 was full of all sorts of “fun.”

Here’s a brief recap:

Myasthenia gravis (MG) diagnosis, all sorts of painful tests, two luxurious hospital stays—one of which involved a horrible spinal tap failure and a blood transfusion—iron infusions, IVIG treatment failure, depression, enduring prednisone hell (gained 60 pounds on it), breaking toes (thank you prednisone for making my bones so fragile), fighting with doctors, finding myself on chemotherapy (don’t let anyone tell you that low-dose chemo is any better than regular chemo—it isn’t), the depletion of my entire savings account (I still have 91 cents), the maxing out of my only two credit cards and loans taken out to help cover medical and general living expenses (thank you Mr. Bossman who makes five times as much as I make for not seeing any of us fit for a raise unless we are promoted—there’s nothing to be promoted to at my fair place of employment and I’m $10K in medical debt on top of other debts, Mr. Bossman!@#$@) …the list goes on.

My 41st birthday celebration lasted a full week. Birthday lunches and dinners and a few sweet gifts including a gift card from a few “angels” who have no idea that it provided funding for groceries this month since my entire paycheck went to other expenses. I’m still $500 in the hole this month thanks to medical fun.

My 41st birthday also brought more medical news I really don’t need or want. I tested positive for lupus and found out I have three large fibroids. Hoping the lupus is drug induced and not systemic. Systemic lupus took one of my aunts out two years ago. I’m waiting to have follow-up blood work in a few weeks to see where it stands. If it’s drug induced, it’s likely from darling prednisone. I’m still tapering off of it. Once it’s out of my system, things should return to a pre-lupus state leaving me to continue the battle against MG. If it is systemic, it will likely be treated by what I’m currently taking for MG—Imuran (aka Azathioprine). Not sure if the dose will change or not. I’ll be on Imuran for life it seems. It’s sad seeing so many strands of hair still leaving my head every day.

With the rocky start to 41, I’ve made a decision to get back into the game of looking for another job while still working on plans to be my own boss again someday. I have to improve my finances by some means.

I forgot to mention that I wore my favorite necklace on my birthday. It’s a cool marble that my brother gave me for my birthday in 1996 the year before he died. I smile when I see it. He knew I was slowly losing my marbles while he was still around. He gave me one to hold on to when all the others have rolled away. My last remaining marble—I must guard it with my life.

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Let’s see what else 41 is going to bring. 42 is my next goal.