Earlier this month marked three years since I was officially and finally (or so I thought) diagnosed with “mild lupus” back in February of 2008. For those of you that don’t know, systemic lupus erythematosis (SLE) is an autoimmune disease in which the immune system essentially goes haywire and begins to attack its own organs such as the heart, lungs and kidneys. In my case, there is no major organ involvement aside from skin and circulatory problems – hence the “mild lupus” also referred to as an “undifferentiated connective tissue disorder.”
My first abnormal lab hinting a “less than 1% chance of developing lupus someday” was detected in December of 2003 when I was a Junior in college. Five years later, a medical diagnosis felt like a victory! Sure, it was sad to be so young and dealing with a chronic disease – but after years of suffering and wondering, I was going to finally get some ANSWERS!!
Knowing what disease I was dealing with brought a very brief sense of relief; until I learned that there were limited treatment options, all of which involved immunosuppressive medications with concerning side effects. I was told to take an old anti-malarial drug, known as Plaquenil, for life and to take steroids as needed. I wasn’t educated about basic concepts such as avoiding sprouts, I wasn’t given any other options, and I only felt worse on those medications.
So I went from having no diagnosis and feeling lousy to having a diagnosis, feeling lousy, and paying for monthly medications with harmful and unattractive side effects.
As relieved as I was to know what I was most likely dealing with, (even though I had a pretty good idea from the get-go), I felt no better physically, I had no direction moving forward, and I have since learned that I can no longer obtain private health insurance anywhere in the U.S.
That’s right, as soon as your medical record documents any sort of heavy hitting autoimmune disease such as rheumatoid arthritis, multiple sclerosis, or lupus – you can kiss private health insurance goodbye. Muuuah!
It doesn’t matter if you transform your diet, reduce all inflammatory lab markers, stop taking medication, return to functioning and exercise frequently. Nor does it matter if you cut out the junk-food and alcohol.Nope, none of this matters because once you receive that desperately sought after diagnosis, and once your health insurance application includes the word “lupus,” you can kiss your options goodbye. You will be rejected in less time than it takes to spell “l-u-p-u-s.”
THIS is what it’s like dealing with an autoimmune disease, so if you or loved ones might be showing signs of an autoimmune illness I’ve got a few words of wisdom to share. My message doesn’t suggest avoiding medical care and allowing an undiagnosed condition to rage out of control, but it does require taking an active and intelligent role in managing your own health.
Autoimmune diseases are relatively slow to develop, so even if there are warning signs, it is never too late to make aggressive changes to reduce or reverse concerning symptoms.
If you’re suffering, I know you want answers. These are my suggestions:
Go plant based and reduce the amount of inflammation in your body naturally.
Drastically increase the amounts of fruits and vegetables consumed on a daily basis at every single meal.
Get plenty of rest, fresh air, sunlight and quiet time.
Avoid alcohol, wheat, salt, oil, processed foods and animal products.
Exercise as much as possible even if it means 5 minutes of walking a day, and stretch too.
Receive medical care as needed but don’t over-expose yourself to standard quo treatments with minimal outcomes.
Avoid pill-popping by not taking over the counter medication or prescription drugs on a regular basis.
Periodically assess lab work but avoid pressing your physician for a diagnosis.
Discuss lifestyle interventions with your physician and determine if your physician is supportive.
Be upfront with your physician and communicate your concern with having a diagnosis on your medical record at any time – it will be held against you for the rest of your life.
Change your lifestyle and improve your health before you reach a clearly determined diagnosis.
If you already have a medical diagnosis, look for a job with a good group health insurance plan or explore the use of HIPAA (I’m examining this now and will report back) to obtain medical coverage.
I’m not quite 30 and already there are many many things that I know now, that I wish I had known when I was staring in the face of an autoimmune illness.
If you’re showing signs of a weakened immune system or ill health such as frequent infections, cavities, sore throats, headaches, acne, psoriasis, rosacea, constipation, bloating, allergies, depression, reflux, muscle pain, joint pain, or fatigue - implement a high nutrient density diet and lifestyle to absolve these issues. Consider seeking guidance from someone like myself (who has nutritional knowledge and first-hand experience) to help navigate the waters, and to take control of your life.
Become empowered with nutritional know-how! Don’t feed (literally!) on a destructive path which has the ability to result in a chronic illness, and don’t fall prey to losing simple freedoms that are too often unappreciated. Freedoms such as the right to obtain health insurance in the wealthiest nation in the world.
Take it from me. I tried the path of least resistance. I took Plaquenil for a solid year and felt worse than ever. In turn, I stopped the Plaquenil, allergy shots, excessive supplements and significantly curbed my intake of allergy meds, steroids and over the counter alleviates. I reduced the amount of pills in my life and I drastically changed my diet. As a result I rediscovered myself.
Three years later, I’ve regained my zest for life and so can YOU!