Lupus

My lupus journey~

I believe Lupus began attacking my body after the birth of my son in February 2008.  A pregnancy and/or birth can trigger it.  After having Rayne I began losing weight rapidly, I assumed it was from exclusively breastfeeding.  I had other subtle symptoms, but attributed them to sleepless nights, caring for a demanding newborn, a newly adopted two year old, and of course all the hormone changes. About the time Rayne turned one I came down with what felt like the worst flu ever, but it didn’t go away.  I was in and out of the ER (my EMS/firefighter brother would bring home IV bags to give me) trying to stay hydrated for the next couple months.  Meanwhile I was going to doctors and specialists (my primary, dermatologist, gastroenterologist, and gynecologist) having tons of tests, x-rays, biopsy’s and labs run. My symptoms included weight loss, migrating joint pain and swelling, fevers, hair loss, diarrhea, migraines, fatigue, nausea, dizziness, many rashes, bruising without trauma, confusion and memory loss, heartburn, sores in my nose, and all over body aches.  I was first diagnosed with IBS, hives (due to stress) and anxiety, and was made to feel like it was psychosomatic. 

I was tired of doctor’s appointments and testing and began feeling a little better, so I accepted the diagnosis and begin taking medications for these things.  I would still have bad days, but I had been cleared that nothing serious was wrong with me.  After dealing with the pain as long as I could I went back to my primary doctor that I had been going to for almost 10 years (it’s a long story) but I decided it was time to change doctors.  I returned to an old family doctor with pages of symptoms, and past test results.  During my first appointment back to him he ordered more labs and said let’s “rule out lupus”!!  This is the first I had heard anything about lupus.  I came home googled it and cried, because it described my symptoms to a tee.  My lab work came back and my ANA (which pretty much has to be positive for a lupus diagnosis) came back negative, still believing that it was autoimmune related he suggested I see a rheumatologist.  It was a few more appointments with the rheumatologist several more tests, a butterfly rash across my face (that had been there before, but I did not know it was connected), and finally a positive ANA I was diagnosed with systemic lupus erythematosus in August, 2011. My rheumatologist started me on a palquinel which is an anti-malaria drug.  My symptoms did not improve and I began feeling worse.  The medication takes a long time to build up in your system, my dose was raised and after about 6 months I begin feeling a little bit of relief.


I refuse to accept that this is as good as I can feel though. I also do not want to take more drugs with difficult side effects.  I began learning about my disease and whole health, by reading books, watching documentaries, attending a seminar and joining a support group. I discovered that environment plays a huge role in lupus.  Stress, environmental toxin, sun exposure, diet and nutrition contribute to disease activity.  In addition to my rheumatologist I now see a holistic doctor that specializes in autoimmune disorders.I spend much of my time and energy in ensuring that my family eats quality foods and avoids environmental toxins. I am also continuing to take plaquinel to protect my organs. I find it empowering and theraputic to live as healthy of a lifestyle as possible. I accept that there is no cure for lupus, but I will do everything possible to live a happy, meaningful life as I visualize remission. I welcome feedback and ideas on my journey to whole health.

I have expanded our organic garden this year, and try to buy as much local, organic produce as possible. My family eats mostly clean whole foods and we try avoid processed junk food.  I take daily Epsom salt baths, not only does it help inflammation, it helps flush heavy metal toxins from the body, and most of our food is magnesium deficient.  I cook as often as I can in my mom’s old iron skillet to help combat my anemia.  I am also in the process of starting a supplement regimen that includes higher doses of Omega 3 and 6 fatty acids to help inflammation and modulate autoimmunity, a multi vitamin, iron and C to help absorption.

I attend a support group that has been amazing.  It consists of a courageous group of people that are so colorful, caring and understanding.  Their stories are all very different (and many acute) but we share the same disease and the same purpose.  We all strive to live a full and happy life until a cure is found and until then will support and be there for each other. My connections in the group grew fast and strong and I am thankful to them for all their support and love.

Lupus is an physical and emotional roller coaster, the feeling of having your own body attack itself in indescribable.  Lupus has also awakened a new awareness of life and its purpose.  I have to prioritize things that have real value and let go of what does not. I use the analogy of sitting on the side line watching your life pass you by and never more wanting to be in the game.   Despite lupus I have a full and happy life, and am grateful!

For more information about Lupus.

http://hstrial-lupusfoundati.intuitwebsites.com/

Mantra

“I am my own healer. I have a radiant voice within that guides me.
I can make decisions for myself. I can rely on others as needed, but at my discretion.
It is my body, my health, my balance, and my responsibility to make right choices for myself.
Right choices include working with competent health-care professional when necessary,
allowing friends and family to help as needed, and, above all,
being true to my beliefs, with the wisdom and willingness to change
as part of the path of healing.”