I didn't intend for this blog to turn into a RA (Rheumatoid Arthritis), Fibromyalgia, auto immune bitch fest blog but I think that may be the direction it takes. Because I need to keep talking. Maybe something will resonate with someone, maybe I will just come across as an ungrateful whiny mess, who knows. It's my blog and I'm doing it.
My birthday was rock bottom. I've been there before but not with the looming long term crippling diagnosis', financial ruin, and overwhelming parenting guilt x 2. If you haven't suffered with RA, Fibromyalgia, and Lupus at a young age after struggling to build a family, you may not get all of my rambling.
Since my birthday our life has been a series of extreme highs and extreme lows and then back up and then back down (stupid freaking furlough). We received a huge blessing, help in an unexpected place. An amazing couple who I met by chance a year ago and who have helped us before in many ways, who know nothing of this blog btw, have helped us manage one huge financial hurdle which has changed our life. Amazing, heart warming, 1 in a million type of story. That event was followed directly by my husband being deemed an essential government employee unaffected by the furlough (don't get excited), working all week just to find out that the essential employees at his office will not get paid either... there's.just.no.money. And no answers. Will he continue to go to work for free like so many others are doing? YES. He is happy to have his job and will do whatever it takes to keep it. Are we freaking out like so many others at the prospect of a long term furlough? YES. We are but one voice in a sea of many wondering how our bills will get paid and how we will keep food on the table. I am unable to work right now. Am I applying for any and every job I could possibly get on short notice? YES. What an emotional few weeks it has been.
So I met with my rheumatoid doctor to discuss the beginning few weeks with new medications and to talk about...... options. None of which are very appealing. My uncontrolled RA and fibromyalgia have to be regulated before anything else can be addressed and it's turning out that the diagnosis I least feared, RA, is turning out to be the most fearful. Below I will post the statistics I found that are just … shocking to me. I'm 32 and have been struggling with this illness, undiagnosed for at least 10 years. All while suffering through loss after loss, difficult pregnancies, and the joys of parenting after loss with a physical illness….. so keep that in mind when you read them. I was STUNNED. The new medications that I've been hearing about and have been offered to me have costly side effects. It's a gamble.
Treat the RA aggressively like recommended and possibly wind up color blind/or all blind, with raging infections I'm unable to fight off, lung problems, and possibly cancer? Uuummmmmmm, NO THANKS.
Choose no treatment and live with RA’s nasty full blown symptoms, possibly becoming crippled sooner rather than later, and then die early? Uuuummmmmm, NO THANKS.
Try mild drugs which I'm doing now, maybe an anti-seizure med, a prescription anti-inflammatory, and an anti-depressant that will help with pain and swelling a bit but won't really help with the things I want FIXED long term- namely energy/motivation, mobility, controlled moods, apathy demolished, sleeping soundly and unaffected, basically getting MY LIFE BACK. It's finally sinking in that there is no pill to get my life back. And that just fucking sucks. FUCKING SUCKS.
Yea, yea, I know I wasn't guaranteed an easy or pain free life, or to be alive at all.... but this is a particular brand of physical and psychological torture that I can’t fathom (and here I thought watching my son die in my arms and living without him, then bleeding out his brothers and sisters every other year was all that a mere human being could take, I WAS WRONG) a long suffering torture that leaves me horrified, angry, frustrated, fearful, guilty that my sons have to watch their mother deteriorate instead of bask in the joy of their existence, struggling to do the most basic tasks that many take for granted, watching in sorrow as my husband wish for another life, and realizing that the apathy I thought was situational and could be “fixed” may in fact be due to this cursed illness that will never leave me whole... or even a fraction of who I used to be.
I will leave you with the bullet points that stood out to me as the most shocking regarding JUST THE RHEUMATOID ARTHRITIS. Success stories of people living with RA who have an awesome quality of life and the medications they are on would be GREATLY APPRECIATED. Leave an anonymous comment or send me a personal email, however you feel comfortable, share the wealth!
According to the Centers for Disease Control and Prevention (CDC), arthritis and other rheumatic conditions are the leading cause of disability in the U.S. More than 30 percent of adults with doctor-diagnosed arthritis (all types) report a work limitation due to arthritis. According to Johns Hopkins, disability is higher among patients with rheumatoid arthritis, with 60 percent being unable to work 10 years after disease onset.
Medical literature suggests that people with rheumatoid arthritis may live 10-15 years less than their healthy counterparts.
Physical limitations may become disabling. The disease may challenge your emotions. Finances may be stretched by an inability to keep working. With a positive attitude, you can take action and find solutions. (Who the heck wrote that crap and do they have any experience with FINDING SOLUTIONS???????????????????????)
Often, joint damage occurs within the first two years following the onset of rheumatoid arthritis. The possibility of early joint damage makes early diagnosis and treatment essential. It's also important for rheumatoid arthritis patients and their doctors to consider an aggressive approach to treatment rather than a conservative approach.
Yea, I’ll get right on that. Such an easy decision to make….