Having this inconvenient, obnoxious visitor who never leaves, it begins to wear a person down.
Before & After
HOWEVER, if you are fortunate, you’ll get a break here & there. You’ll learn to rally. Life CAN be good again. May never be the “same” but there is always hope for better days, weeks, months. I’m still “SUSIE”…. I’m just different than before which calls for new memories to be made. Therefore I prefer to call my “battle” with Lupus SLE a “JOURNEY”
Or, better yet, a treasure hunt. But the treasures may not always be the good stuff you can take to the pawn shop. It may be the frustrating, scary stuff that makes you appreciate life, family and friends.
Music has always helped me through the tough times and helped be celebrate the good times. This song, by MercyMe called The Hurt and the Healer is a favorite,
ANATOMY OF AN ILLNESS
One Year of Living in a Lupus SLE flare. Although I’ve had Lupus for years prior, the year of 2013-2014 was particularly bad. The illness flared and I lost a lot of weight, down to 85 pounds, had hospitalizations for pancreatitis and GI tract problems. I just went generally DOWNHILL fast. It scared me because at the time, I really didn’t notice I was losing weight so quickly. I didn’t CARE that I couldn’t get out of bed, or was so weak. The fact I was oblivious to my situation was more startling that the situation itself. Fortunately, with my family’s help and intervention I got to the doctor and hospital. I plan was put together to get me well and we ALL did it. I’m happy to say I gained my weight back, I’m better, and I’m dedicated to working hard to stay healthy as possible. I DO want to live and I now take my Lupus SLE seriously.
Following is my video short of that year….
Patient in Affliction
I have found myself, for the most part, alone in this journey which has had its share of struggle. But, I’ve always felt God’s presence. Thanks to reading the Living Waters blog 💙
“My God turns my darkness into
Light.” Psalms 18:28
For whatever reason, when I’m in the hospital I’m alone. My parents are gone. My friends? Busy or will catch Continue reading
Nite time in room 300
This past week I had the pleasure of a hospital stay due to my latest acute pancreatitis attack. Which turned into, no, more like a bad ulcer from your esophogus down throughout your stomach. From zero to warp speed I went from a nice afternoon of fixing my lawn mower to laying in the fetal position in my bed.
“Trust in the Lord with all your heart and lean not on your own understanding;
In all your ways submit to him, and he will make your paths straight.”
This is my fifth bout with pancreatitis over the last few years. Third in the last six months. I KNOW the signs and symptoms. I know when to wave the white flag and surrender to the hospital for IV fluids, blood tests, CT scan and general “we’re going to admit you to keep an eye on you & control your pain.”
six months of a flare
When you have something like Lupus, you don’t outwardly look sick. Which can lead to people suggesting either your weak, lazy, it’s in your head.
We’ve all heard the comments. But I’d take the comments any day over what a matter of three months of a Lupus SLE Flare left me looking & feeling like. I went from 109 lbs. to 85 lbs. I don’t care what I look like these days. I’m happy for good days. I’m THANKFUL to God for His Mercy and Love and my weight gain back up to 104 lbs.!!
The names, events, situations have mostly all been changed to embellish the story because that’s how I roll
Not every moment or every day is filled with pain, brain fog and fatigue. There are times I may get a short reprieve, and I mean short, but a reprieve nonetheless from my insignificant other, Lupus SLE. After eight months of fighting with Lupus and his buddy pancreatitis. Home bound or in the hospital, I suddenly was well enough to DO something HUGE! God’s grace shown upon me and I had a solid two weeks of nearly symptom free health, I say NEARLY because lupus never totally goes on vacation. I jumped on it, and….
….like Macklemore poppin’ tags at Goodwill, I took total advantage.
I went camping. An ADVENTURE it was too. It started out innocently enough at the beautiful Crater Lake. The deepest lake in the world the brochure stated! I made my way to the lookout, where happiness filled my soul and turned into pure giddiness. I found myself dancing a little jig on my way. With my trusty guard dog, Sophie, keeping a keen eye out for bears, cougars and Bigfoot, I was ready for my adventure to begin.
I was so happy to be out somewhere I asked a kind man to please take my photo so friends and family would believe that I actually did something. After handing him my iPhone, I explained that on the count of THREE to touch the round button.