be forewarned… this is a rant.
I posted “my story” with my numbers today on facebook. I have some amazingly supportive friends. I didn’t actually anticipate the push back I got on my story. BUT I was surprised.
I posted that I have RA
I posted that I take CHEMO THERAPY injections every week in my stomach
I posted that I take $2000 a month in other injections every week in my stomach.
I was informed that I probably should have my vitamin D levels checked because MS Wellmeaning had hers checked and when she got her vitamin D levels back to normal ALL of her arthritis symptoms went away.
DAMN. I have been WASTING all this freaking money on blood work, x-rays, doctor appointments and meds for TWO years when all I have to do is take a couple shiny green Vitamin D pills and all my problems will POOF evaporate. I wouldn’t have to deal with destroyed immune system, thinning hair, and all of the other happy side effects. I have been so silly… or maybe I just really REALLY like feeling like I’m going to throw up and pulling fist fulls of hair out of my comb. Really? I’ve been so stupid. I should have just started taking vitamins two years ago and the huge bumps on my knuckles would have evaporated sooner. I would have stopped limping because my toes are so sore. I wouldn’t have to be paranoid about pushing the freaking elevator buttons and door knobs. I could have just taken one shiny green pill a month (FOUR dollars a month… that’s it) and I would have been fine.
stupid stupid doctors and all their new fangled tests.
and what’s worse… MS Wellmeaning is one of the epilepsy awareness people who are informing the misinformed and unaware populous of the world all about the misinformation about epilepsy.
I tried to not get into a sniping argument with her. It isn’t worth it. It really really isn’t. But I was friended because I am spreading CORRECT information about what is going on with my daughter, I’m apparently too stupid to know what is going on with me, however. I’ve been so silly.
Happy International Arthritis Awareness Day.
I won’t tell you how to treat your chronic condition. Please do me a favor. Don’t tell me how to treat mine. Or better yet, don’t tell me how you made all the ills in your life magically disappear and now your life is TOTALLY MARVY. I know that there are many ways to treat what I have, but at least give ME the same DIGNITY that I give you by letting me work on dealing with my condition my way.
Yes, I have my blood drawn EVERY SINGLE eight weeks. Three tubes every 8 weeks so I know that I’m not destroying my liver and so I know how well the chemotherapy is doing and the biologics are doing in keeping the rampant inflammation from destroying my joints and organs. I know that my thyroid is fine. I know I am not a celiac. I know what my Vitamin D levels are. And I know that I have Rheumatoid Arthritis.
I may be the poster child for mary sunshine most of the time, and I’m the chick at work who is always in a good mood… because that is the face I choose to put on. At least give me the dignity to know what is wrong with my body and I will give you the same dignity.
please drive through.
ARGH!! What’s hard on that particular scenario is that vitamin D deficiency can present as arthritis symptoms, so correcting the deficiency does make the symptoms go away. Those people don’t grasp the fact that they are in the minority and, in fact, you have a DISEASE needing treatment. And, yes, your doctor already checked your D in a searching for the right diagnosis. Tell her!
I know. My son was feeling REALLY REALLY awful (and his Rheumatoid factor was above normal on one blood test, so PCP suggested strongly that he see my Rheumy) and after subsequent blood tests, we found out his vit D levels were horrible… so he started mega doses of Vit D (nice shiny green gel pills)… I started same pills a couple weeks later, mine was a little low, but probably because I am relegated to being a database administrator in a cube farm and don’t get sunlight much…
I told her I had been tested for vit D (and get tested ever 8 weeks when I get my “normal” screens… and she kept at it. What are your levels. What is the dosage you are taking daily. What are your symptoms.
This is an epilepsy advocate that is in your face with information on epilepsy awareness and all that people need to understand about this misunderstood (and she is right… when my Amandya was diagnosed, I found out just how misunderstood) condition. But you know what… being bitchy to me about something you know nothing about kind of destroys your credibility in my eyes for the cause you do care about.
If she had stopped at ONE question… or even one response to one answer to one question… I may not have felt like I was getting beaten up… but she just kept at how I was stupid and wrong about my diagnosis and if I would just take TWO (twice my doctor’s recommendation) pills a day maybe THAT would fix it…
I just got tired of the drama…