Living with Lupus

Have you ever woke up feeling hung over, but you didn't have a single drink? Woken up feeling nausea, but you aren't pregnant? Ever been so fatigued that no matter how much sleep or coffee you get/have, you can barely lift your head off the pillow?

Personally, I never know how I'm going to feel on any given day, or even every hour. I can cycle through feeling fine and terrible multiple times a day.
I often feel like I've been hit by a mac truck, every part of my body is effected.  I get that feeling the minute I wake up in the morning, before I am even out of bed.
And some days, I just want to stay curled up in bed, but I know that on most days, not even that will make me feel better as the pain of laying there is so great I have to get up take a shower to help with the pain.
I have to pace myself , which is a hard thing to do when things start to pile up around the house.
It's hard to make plans as I usually have to cancel them. But I do make them and thankful when I can make it.
You can probably talk to 100 different people with lupus, and get 100 different lists of symptoms and complications.....No two cases of lupus are exactly alike.
Patience is need so much with chronic illness. It is a daily fight that I must endure and I had to learn patience to cope with it . I trust God with the process and know He is with me all the time, to help me cope.

Stress is a NO no!! I really have to watch out for it. I know from past experiences it throws me right into a flare. click to see Signs and Symptoms of Lupus Flare

A tell-tale sign of lupus is a butterfly-shaped rash across the cheeks and bridge of the nose. Other common skin problems include sensitivity to the sun with flaky, red spots or a scaly, purple rash on various parts of the body, including the face, neck, and arms. Some people also develop mouth or lip sores.

I Started out yesterday fine and by night fall I had a rash above both eyes. Today as the day went on I got a rash on the side of my nose.

Sometimes I get it above my lip and I also get sores inside my mouth.

It took MANY years to finally get a diagnose. I knew since I was in my 30's something wasn't right. I've been to so many Dr's I lost count. I was told so many times it is all in you're head.  I was told I had so many different illness's i think to get rid of me. But along the way i found a few Dr's who willing to help e. I was finally diagnosed In 2011. I went on disability in May 2011. I miss working and doing the things I use to love, but acceptance was something that i had to get with. I lived so long living in my health , that i finally had enough and I LIVE LIFE today to the best of my ability!!

I also suffer with other disorders along with the Lupus. Fibromyalgia, Sjogren's Syndrome, Chronic IBS-D, Bursitis/ Arthritis , Degenerative Disc Disease & bulging disks in neck and lumbar, Chronic pain.
I am going through a batch of tests right  now ( 4-2012) for the chronic IBS as I have lost a lot of weight. Ive been sick with it since  June 2010. I will having a Breath test May 1st .

If you suffer with any Chronic Illness , My prayers are with you! I know I just focus on all the good I  have in my life today! I am thankful for so many things and I have a wonderful family and support system.
I love knitting, reading, all kinds of crafts, music, cooking/baking, watching movies, baseball ( METS), football ( Miami Dolphins) the beach and the country. We have a cat named Honey Kitty, she is the Queen of our house.

God Bless Donna S.         OH and drink plenty of Water!

~Fear not the valley that you are going thru, for you tredge it not alone, God has sent Grace and Mercy to walk it out with you~
"Heavenly Father, Please give me the strength I need to meet each challenge I will face today.Thank You that You promise never to leave me or forsake me.I know that You are always there. You are always for me."

1 comment:

Anonymous said...

God bless you in your journey. Won't it be incredible when get to Heaven and can shed these diseases?! Lupus comes with so many other side diseases and you have shared about it so well! Keep the faith, fight a good fight and someday we'll go home and celebrate our new bodies with our Savior!