Last year, out of the blue, I became severely ill and for nearly 4 months I experienced some of the worst pain, sickness, and fear of my life. My joints were massively inflamed, and for many hours a day and most of the night, I had no movement in my hands, arms, feet, and legs. I thought I was losing my mind since my symptoms would come and go in hourly waves throughout each day. I knew something serious was happening, yet at the same time, when the pain went away in the afternoon I thought it must not be so serious anymore. I was going to the doctors about 2-3 times a week and had taken every test possible, unfortunately, even though I tested positive for Lupus my doctor didn’t think that I had the “hard to diagnose” disease. After my doctor said “great news- we didn’t find anything wrong with you” I knew it was time to be my own advocate. I switched general practitioners, and went to the hospital where a Rheumatologist diagnosed me with Lupus on the spot.
My biggest challenge was being strong at school and in front of my family. No one knew of the excruciating pain that I felt except for my husband, and even from him I would hide my tears. Struggling through this disease has made me so much stronger. People look at me and see the same person, but they don’t know the pain I’m masking or hard it is to even move. Living with Lupus will be life changing, and I know that I will have healthy periods of remission, but at the moment- I’m hurting.
I find it interesting that I am sharing so much of my personal struggle over the internet, when I haven’t even shared this much with people that I’m close to. I draw strength everyday from God and I stay positive knowing that there is a purpose for everything in life and that I should be grateful that it’s not worse. I always joke with my husband and tell him that no matter how badly I feel, I’ll never walk outa our house without makeup and heels on!
Stephanie, I'm so sorry. What can be done for lupus? What are the treatments? What is the prognosis?
ReplyDeleteI am glad you are able to share this with us, because everyone needs a place to feel supported and accepted. And although I'm sure you have that in your marriage and family, you probably don't want to burden them. I understand.
Life isn't supposed to be fair, I get that. But it seems cruel that you and Allison have horrible illnesses, my son has Crohn's and I just lost my job. Matt just had a baby so we can take a lot of joy in that! And I'm always good for a little humor - see my post later today. I will recount my foibles and follies of being 53 and dating.
I'm sorry to hear about your difficulties, but it's nice to hear you have so much positivity amd support.
ReplyDeleteAmazing what you've able to tolerate physically! I, too, am wondering what treatments are available and if you've tried any (hope this isn't too personal of a question!). I think that this, like so many of our group members' moving pieces, is a great post to use for the 8th week writing workshop piece. It contains alot of honesty and sincerity. And it sounds like you do have hope to share in your moments of fear- God IS our ever-present help it times of trouble. My prayers go out to you, Stephanie!
ReplyDeleteHi Stephanie, what are you working on today? Just wanted to let you know I posted something new: my latest adventures!
ReplyDeleteTo answer some questions- Lupus affects everyone differently and can range in severity. The treatment for me is medication and constant dr. appointments with specialists galore! I know that there are some experimental treatments happening in Europe but none here that I know about. There isn’t much flexibility with medications (or steroids) from what I am told or have read.
ReplyDeleteI really appreciate your support- yes my family is supportive but I hardly let on how truly sick or in pain I feel on a daily basis. I really need to explore all feelings that I keep secret from my family and colleagues as work. Elisha, you’re right, maybe I should use this topic for my week 8 piece.