Just Out of My Grasp - My Personal Journey with SLE

Just Out of My Grasp
Ahoy Fellow Fathomers, I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I found out on June 19, 2013 the reason for many of my ongoing health problems is because I have systemic lupus, also known as SLE.
Thank you for listening, each week I will have a new installment chronicling my journey. Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.
Hugs for today …
2011--I haven’t been able to peel vegetables or tough skinned fruits for a few years now. I attribute it to early onset arthritis, which seems to be genetically laced through my family. Far more than an inconvenience, I used it as an excuse to get the kids to help me when making complex salads, cooking potatoes, peeling jicama, you know, the good stuff.
A visit to an orthopedic doctor who specializes in hand and wrist disorders. I got an ergonomic keyboard and mouse.
Maybe this is carpal tunnel from typing for almost seventeen years.
A couple of visits to a hand therapist who helps with physical therapy of the wrist and fingers. No real numbness, the classic signs of carpal tunnel and the x-rays reveal nothing. She gave me some exercises to perform, and like the heat, it helps at the time I’m doing it.
Time for more naproxen and learning to live with it.
It sucks getting older.
Still have not answers and this is becoming far more frustrating than helpful. I’ve now visited four different orthopedic doctors for various aches, pains, and limitations.
I thought working out and lifting weights was supposed to help the body. Why do I feel like a 1970’s Buick? Always breaking down and groaning with most strenuous motion.
I need an answer.

Comments

Iris B said…
Glad I stumbled upon this on my way to TT. Kudos to you for starting to talk about it. I posted something about "constant pain" recently and the good and bad days, and was surprised by the amount of feedback. Listing my 'ailments' would take up most of the comment area so I wont' go into it, and even though I don't know anything about lupus, I hope you learn as well to live and accept it. Enjoy every day, enjoy the company of family and friends AND keep on writing your wonderful stories!
Davee Jones said…
Hi Iris, thank you for your comments. Please feel free to post whatever you want, matter of fact, if you want to be a guest blogger for a week of "Just Out of My Grasp", I'd be honored. I think it's important we share knowledge, we never know who we might help. :)
Rhonda F said…
You are an inspiration to all of us who know you! We have seen your strength and know how much you have overcome! Love you more than you know! Hugs...
Tonette Joyce said…
I share a blog with Iris and she posted your link on FB.I, too, Have SLE, along with Sarcoidosis,RA and Sjogren's...I have been very fortunate in many ways, but ...
Constant pain fatigue and the roller-coaster of feeling not-too-bad, getting things done and then falling apart and watching everything around me go unfinished and to pot is too much.
And no one understands;they don't understand how hard and how fast you can crash, how it is hard to make plans.How sometimes you can push yourself and keep going but even if that is possible, you'll pay for it later. And they don't want to hear it. THEY have had an ache or short term pain.THEY get tired. They treat yo like you are dying and when you bounce back a bit, they treat yo like a hypochondriac , someone who has control over how they feel. I imagine you have experienced all this.
Sorry,I just let go there, but I imagine that you understand.
I congratulate you on your accomplishments.I know that many simply give up and give in to the pain and other symptoms.
I wish you the best in all things.
Davee Jones said…
Tonette, thank you for your candor, and I agree. I have many good days, but, sometimes, the day can turn bad within an hour. like you, I push myself on good days and pay for it later. But, my rheumy said use it or lose it, so, I will continue to work and excercise on those days I feel good. Days I don't feel as good, I will do yoga or something because if I just sit, I feel worse than ever,both mentally and physically. I would love to continue to exchange thoughts, thank you again for stopping by. Share anytime or anything you want. hugs on this new week.
Davee Jones said…
Rhonda, I LOVE YOU TOO! big ole Texas hugs and I miss you everyday.
Sarah Cass said…
Lovely addition to TT. Absolutely love it and Andrew not wanting to say goodbye. I can't wait to see more of this one.

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