So, I have been here before…sharing my FLAGC story about RA. Since that post, my story has changed.
I received a phone call from my doctor that left me in tears, then ready to press on. As of today, I don’t have answers as far as my diagnosis, but I’m finding my way back from square one!
The following is from a blog post in September; I decided to continue sharing my story so others won’t be discouraged by their present situation.
” I ask not for a lighter burden, but for broader shoulders.”
This was one of the first quotes I clung to when I first made the choice to speak up about my illness. I knew it was going to take a lot of God’s guidance, faith, and guts. I have reached many cross roads over the last year: raising my son, getting laid off, losing insurance, my condition getting worse, finding “the right doctor”, trying to uncover the best pain management, looking for work, applying for this and that while keeping a smile on my face and saying “I’m okay”.
This week posed a new set of issues (mind you, it’s only Tuesday!). Monday, learned that my diagnosis was incorrect, in so many words. The blood work was inconclusive for RA and Lupus so I’m not quite sure what’s going on. For most people, this would be good or encouraging – for me, this has become a game. If I could name the game, it would be “Jenga” – pulling away different blocks from the stack, hoping the entire thing doesn’t fall apart. I was never good at that game.
While this is going on, my pain has been off the charts for weeks now. I do have a considerable amount of pride and it took four people to convince me to go to the ER. Now, I haven’t met one person that enjoys hospital visits in any degree…but I would classify a nine (yes, “9”) hour wait as beyond ridiculous. I did find a way to make it somewhat enjoybale (refer to #TalesFromTheER via Twitter).
Also, the last two days posed some personal drama that should be scripted for Lifetime. I can’t apply all of it to virtual paper but it includes pain, betrayal, deceit, and misunderstanding. For now, I can’t control the physical pain – but I can do my best to lick the emotional wounds so I can brave the new journey ahead.
I believe that God will continue to carry me through all this, no matter how dark the night. Yes, I’m back a square one, but I will be stronger because of all of this. My shoulders are weak, but they are indeed broad! I appreciate my #spoonie friends for “getting it”, kinda hard to explain how people whom you never met have sympathy for each other, but it’s easy to understand. I also thank my immediate family (Dad, Mom, Sis, Bro) for fussing at me and smothering me in a loving way. That’s how we roll.
Best!
Ebony
Virginia
Submitted 9-13-11
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Not sure what all your symptoms include, but I suffered from chronic pain pretty much my entire life. I was FINALLY diagnosed with full body RSD (Reflex Sympathetic Dystrophy) and then a few years after that it was discovered I had EDS as well (Ehlers-Danlos Syndrome) both hypermobile and vascular. Look into these illnesses and see if you show any similarities, you never know. Doctors need our help, they only PRACTICE medicine, they have yet to perfect it! LOL!
GOOD LUCK!
I hope you get well soon and I’ll have you in my prayers it’s a rough road and all you can do it’s to keep your focus and not to give up with lupus you will have your ups and downs and some stronger then others all you can do is to look up things to make sure is not something else diagnoses is going to be a little difficult cause lupus can imitate soooo many illnesses all you can do is hope,believe,and mentally focus to how to relax your body and plan your goals and try to accomplish as much as you can think to yourself this is the new me and this is how far I can go!!! read the spoon theory it’s very good it explains how the lupus works I hope you like it ….cause it has helped me out a lot 🙂
You are in my prayers. I was diagnosed with lupus and fibromyalgia at age 35 and the doctors traced the symtoms back to when I was 12 years old. I thought then the pain was unbearable, and then last year it was much more intense. It even feels lke it’s burning! So my new added diagnosis is RA. I am really struggling to understand it and even more on how to deal with it and the methotrexate injections that are the only thing that gives me some relief. Hang in there!
Don’t give up the fight! You can come through it. You are strong and fight like a girl, becuase you have the rest of us to help you through the rough times. We all have stories and can undrestand the emotions that you are going through. I will be here if you need me. My prayers are with you for a diagnosis and pain relief.
Dont give up…is not easy but you can win.
hey there ive been reading your story and i was wondering if you have ever been tested for crohns and colitis it can give u some signs like lupus and it does go with RA. i hope you are doing well. stay strong and know you are not alone in your fight to find answers.
EBONY, i have been struggling with chronic pain, OCT 27TH it will be 18 years. I Suffer from a failed back surgery and other compilations as i was injured on the job an was only to be off 6 weeks ….. I HAVE NOT BEEN ABLE TO RETURN. I know everything you are going through1 I AM IN CONSENT PAIN . i am still tiring to find a better quilty of life . A DOCTOR THAT WILL LISTON. I believe the hardest part is other people …. who don’t understand us? …. or what our life is really like ? for me i often feel i cant relate i”m (A RARE BREED) lol we are because we r very strong to deal with what i believe not very many people can yet we r good people indeed 🙂 i hope u like to stay in touch an maybe we can chat ? ty mary
EBONY. THANK YOU FOR YOUR STORY, I TO SUFFER FROM CHRONIC SPINAL NERVE PAIN. IN OCT IT WILL BE 18 YEARS. I KNOW EVERYTHING U R FEELING. I AM ON SSDI AN HAVE BEEN SINCE 24 I MY STORY IS VERY LONG BUT MOST I LEARNED IS THIS ……. DOCTORS NEED COMPASSION WE SUFFER AN ARE . PEOPLE LIKE US R RARE AN ONLY WE UNDERSTAND EACH-OTHER 🙂 I HOPE U WILL CONTACT ME IT BE NICE TO CHAT WITH YOU !!! THANKS SO MUCH FOR SPEAKING OUT MARY