I have been avoiding this update for several days...
I found a new hobby, one I LOVE. It's hand piecing a quilt. It is the most relaxing thing in the world. The problem: my hands. Some days my hands hurt so bad I hide the tears. I don't want others to know because I don't want them to roll their eyes and tell me to stop.
It's something else Lupus is trying to take from me and this time I'm refusing to give up. Sucks. But have you ever found something that you adore doing? Something that takes your mind to relaxing places and consumes all the negativity out of your life? That is me with this hand piecing. So I will continue to take a lot of pain pills and hope that my joints will get use to the motion of quilting.
So yesterday I went to the doctors, just a normal check in and of course to ask about the new Lupus drug Benlysta. We tallked and she reminded me that my Lupus has a lot of RA symptoms. It's wierd, I test positive for Lupus and negative to RA, but my Lupus mimicks RA in several ways. So before we can try Benlysta I need to try another infusion first.
It's a risk. She has used it on several patients with great success, but there is also the risk of SERIOUS infection and even death. After listening to her talk my mind immediatly went to all the things Lupus has taken from me and if I could get them back.
She even said the magic word "possible remission". SIGN ME UP! Who cares about the risks, let's do it. I am willing to try anything and the first time I feel wierd I'll call.
She sent me on my way with a notebook full of information and sent the form off to my insurance. So now I wait. It's an expensive drug and we need preapproval. I sit here impatient ready for that call. I'm already planning what I'll do for 4.5 hours while the drug is slowing released into my system. I am so excited... maybe, just maybe I will be hand quilting for years to come.
1 comment:
Corie ... hello! I notice you posted your update more than a year ago, but I'm posting a comment to tell you ... I HEAR YOU ... loudly, clearly.
I understand about the pursuit of creative expression and craft and the problem with lupus-related hand pain -- and in my case, arm pain. I design and make beautiful and unique wire-wrapped jewelry. I am a seamstress/designer and I could really use the work right now ... especially since I am unemployed in my technical/analytical specialty, Grants & Contracts Specialist, but I wonder how I would cope with the escalation in pain and the additional interruptions in the quality of my sleep each night.
I truly understand that continuing your creative pursuit -- quilt piecing -- involves a tradeoff, which is acceptance of and minimal relief from the excruciating pain that manifests in the hands and arms as a result of SLE and RA.
I spend hours each day at the computer conducting an employment search. I would love to spend an equal share of time producing my clothing, jewelry and accessories designs! I am this very day giving myself a pep talk to push through the pain and just do it. Yes -- even though my nailbeds are already aching and my fingers and palms have that stabbing pins-and-needles type nerve and joint pain. I am glad I found your blog because, at least for today, I can speak honestly and openly about how I truly feel.
I most often mask my pain and I seldom speak of it out loud to my roommate/partner. You see, I appear youthful, muscular and physically-fit for a middle-aged woman who is about to turn 53 years old in less than a month. Unfortunately, I no longer have the financial resources or medical coverage to have my symptoms treated by a doctor, so I am at this moment brewing a concoction of ginger root, preparing to take 2 arthritis-strength acetimenophen, and steeling myself to continue to grin-and-bear-it. To tell you the truth, Corie, in the past doctors took one look at my physique and instantly prescribed medications for depression, as if the terrible pain that I experience is all in my head. Perhaps I am lucky to have no insurance at all because at least I no longer pay to be poorly treated by inadequate doctors. I hope my candor does not offend, Corie. I share just to say that I understand.
When I finish preparing today's revisions of resume, cover letters, and other documentation, I NEED to connect with my creative self! I feel the same level of self-affirmation and fulfillment that you do when you quilt! You go, sister Corie! I am cheering you on!
Tonight when I retire to bed with pain already wracking my hands and arms, my roommate/partner may even want to be intimate. Sometimes the tenderness is a pleasant distraction, and sometimes it is not. I've made up my mind that tonight, I will graciously bow out. I deeply need to connect with MYSELF, to express myself through something creative today. Still, I am one of those who tries too hard to push through the pain and fatigue that accompany this illness and I experience terrible guilt when I do speak out about my symptoms, only to have people look at my biceps and raise an eyebrow as if to say, "You have the constitution of a horse ... get over it!" I almost chuckle here because I often whisper the same thing to push myself along! :-) Sooooooo, dear Corie ...
When you face your next moment of deciding whether the creative process should be set aside to avoid lupus pain, please remember me and say a little prayer. I will be thinking of you and praying that you receive swift and positive results that give you the relief to quilt to your heart's content, dear sister!
AQ in Rockbridge Baths, Virginia
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