(BLOG SERIES/PART 1: GETTING LOST IN THE GOVT LUPHOLE…LIFE WITH LUPUS AS A US CITIZEN)
***Just a little note before you read to understand my heart behind this LUPhole series…click HERE***
Stupid Lupus. (*always said in a silly voice, of course ; ) A phrase I say all too often when having to explain what is causing most of the symptoms attacking my body. And, living with stupid Lupus as a US citizen without the care that should be granted to EVERY human being…well, let’s just say it’s made my situation EVEN stupider (I know, I know—not a word, just seemed fitting.)
I’ll be sharing more specifically about this illogical journey of getting lost in the government loophole in the blogs ahead, but today my focus is going to be on Lupus Awareness and my personal story.
A FEW FACTS ABOUT LUPUS:
- In Lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body’s own tissues and organs—the kidneys, brain, heart, lungs, blood, skin, and joints. Lupus is a leading cause of premature cardiovascular disease, kidney disease and stroke among young women.
- Lupus is one of America’s least recognized major diseases. While lupus is widespread, awareness and accurate knowledge about it is lacking. More than 90% of lupus sufferers are women, mostly young women between the ages of 15 to 44. Women of color are two to three times more at risk for lupus than Caucasians.
- Systemic Lupus Erythematosus (SLE) is the form of the disease that most people refer to when they say “lupus.” The word “systemic” means the disease can affect many parts of the body — including the kidneys, brain or central nervous system, blood and blood vessels, skin, lungs, heart and joints. Skin involvement occurs in up to 80% of patients.
- Signs and symptoms that suggest systemic lupus include: Painful or swollen joints; Fingertips and/or toes become pale or purple from the cold or stress; Sores in the mouth or nose; Low blood count; Red rash or color change on the face, across the cheek or bridge of nose; Unexplained fever for several days; Chest pain associated with breathing; Protein in the urine; Extreme fatigue — feeling tired all the time; Sensitivity to the sun; Depression, trouble thinking, and/or memory problems; Unusual hair loss, mainly on the scalp.
MY “STUPID-LUPUS” STORY
It was the Spring of 2006 when I was rudely introduced to this cruel disease called Lupus. At that point in my life, like most people, I’d never even heard of the word Lupus and unfortunately, it would be another five long years before I would be formally diagnosed with the mystery of what had been assaulting my body for so long. It’s quite difficult to diagnose Lupus because it mimics many other symptoms and most often multiple organs at once.
When I had my first “flare” (a name given to when things go from bad to SCARY-bad in your body), I thought I was having a heart attack. Or was it a seizure? Or were my lungs shutting down? But, why did my stomach also feel like someone just punched me? And, I was shaking…and so very cold. It seemed like EVERY part of my body was freaking out. I was so scared. I truly thought I was dying. I couldn’t really move well. Or think well. I had never been to the Emergency Room, but I had a sense I better get there. Sadly, this trip would be my first of over ten ER visits to date. They treated the symptoms and sent me on my way without any clue what was the causing this madness. Thus began my exhausting and despairing road of trying to discover the root cause.
I spent the next year of my life going to every doctor imaginable because each part of my body had symptoms. I even spent a week at the infamous Mayo Clinic having everything probed and ex-rayed for 5 days straight, yet…no Lupus diagnosis. (They did however, find endometriosis and surgically removed 5+tumors/growth from my abdomen.) It still left me discouraged and confused as to what was happening to my body.
One of the hardest parts of being undiagnosed during this time (besides of course…being undiagnosed) was the emotional element, in particularly the treatment and judgment of well-meaning loved ones. Because I didn’t know what was causing these symptoms, I couldn’t prove to anyone that I was actually sick. Remember when you were young and your sibling would say they’re sick to get out of going to school and you were just SO convinced they were faking…well, until later, that is, when you found out they were actually quite ill? No, I’m sure you never accused anyone of that one! (I have four sisters-ha!) Sadly, there were a few closest to me during this time with this attitude and used their position of authority in my sphere to convince others of the same. (Just a side note of advice: When you see someone suffering, whether you think they are faking or not…treat them as you would like to be treated. Love ALWAYS wins and love is ALWAYS healing.)
The day of diagnosis awaited me…just a hop-skip-and-a-jump of 5 years ahead in 2011 when I moved to Northern California and had a divine appointment with a new family doctor. At this point, I had become so weary of seeing any more doctors, but because of a few unique symptoms I was having, I relented. So glad I did!
I sat on the doctor’s table showing him one of the multiple bruises I had on my legs. Getting lots of bruises was normal for me, but having one the size of my hand knowing I did not bump into anything to cause it was NOT normal. And to add to it were tiny red dots (low platelets) all in the inside of the bruise. He then proceeded to ask me if I get cuts and sores on the inside/outside of my mouth? Frequently, I said and also had a mouth full at that time.
We finished out meeting. He ordered blood tests. I get those tests and soon after received a call from him saying he would like a follow-up appointment the same week to go over the tests. (Uh-oh. That can’t be good.)
He told me all my blood work came back positive with Lupus. LUPUS? Never heard of it. He also told me I would need to start medication immediately. I quickly replied to him that I wouldn’t be going on any medications. He paused and then said, “Well, without medications…life expectancy is five years.” Weeelll, alright then. Silly me. He was personally experienced with this disease because his wife had been battling it for ten years, which is why he immediately recognized some of the markers on my body.
Although I felt a bit scared, I was grateful and relieved to finally have a diagnosis and name to this beast…
I continue to battle daily. Each day comes with many challenges. Take today for example: I almost passed out while trying to do some light grocery shopping. (I had recently blacked out while walking and have also had increased problems with nerve damage on my feet causing it hard to walk at times.) I slowly started to feel numbness in my feet, light-headed and my hands were turning blotchy pink and white, so I sat down on a bench for some time to get my bearings. Then off to the bathroom stall to cry it out and recover emotionally. It was embarrassing and scary at the same time.
But…just gotta keep ON steppin’, right?! Life here on earth is but a vapor. And, I know God has made me with a purpose, SO therefore I will continue to fight each day to live it out. This is only a short season (compared to eternity) and one day, whether here on earth or in heaven…I am promised to be healed!
AND…THAT’S GOOD NEWS ❤
(P.S. If you would like to donate to help with my healthcare/living costs, you could do so by clicking the “DONATE” button here on my “ABOUT ME” or website: www.caterfly.org THANK YOU!!)
*Disclaimer-I’m not an expert, nor am I a politician, but a law-abiding citizen of the United States, who has experienced these things firsthand. My aim in this blog series is to bring awareness in these matters and not to debate or argue about them. I would ask you to kindly refrain from doing so here, as well. However, I DO welcome constructive comments regarding your own experiences and also ones that will help the overall betterment of our people. I sincerely THANK YOU!