Living with Lupus: Ivy Shapiro

I have been called a "tough chick", "survivor", "inspirational", and other positive adjectives that, truthfully, make me feel a little uncomfortable.  Over the 16 years since I have been living with chronic illness that has ranged  from manageable to completely debilitating, there have been many times that doctors, nurses, and "normal" people have made comments about how they don't know how I manage to maintain my smile, (mostly) positive outlook, and fighting spirit.  They have said, "If I were you, I don't think I could do that...".  I always looked at them and said, "Sure you could...you just learn how to cope with the ups and downs and move forward the best you can each day...some times it is one second at a time, some days it is better and you can do it one day at a time, but you never stop believing that the next day will be better in some way."

Then it happened...after all that time...so many different diagnoses, so many different trials and errors of medications, so many infections due to a weakened immune system, that I just kind of gave up.  I stopped believing in better times.  I was stuck in a rut.  I had tried all the "traditional" medications.  I had seen all the different "ologists" in my area and there seemed to be nothing they could do to help my pain and flares from SLE, mast cell disease, autonomic dysfunction, severe osteoporosis, migraines, tonic muscle spasms, seven compression fractures in my spine, etc....

It was then I saw my pulmonary doctor for a check up and he suggested I seek out alternative treatments (nothing I would ingest or that would manipulate my spine and make the fractures worse), so I figured, if it can't hurt me, it can only help!  I first tried the more traditional route of hypnosis for pain management through a psychologist.  I learned a few great techniques that help me to this day for reducing my pain during migraine headaches and easing tension in my muscles.  I then moved onto more guided meditations  that I learned while admitted to the hospital for what the doctors suspected was a stroke/neurologic event that caused swallowing difficulty and my tongue to pull to one side of my mouth.  The speech pathologist noticed right away that the issue was caused by a tonic spasm in my throat, which was pulling my tongue to one side.  The guided meditation allowed my body and throat muscles to relax enough for my tongue to move back to center.  She was then able to teach me the proper exercises to keep those muscles relaxed and get stronger.  (The issue was stemming from my neck and neuro-toxic reaction to medications, not a stroke).
I still use the guided meditation often to help relax my muscles and keep me feeling peaceful and balanced...especially when in a flare or lowering prednisone.

There was a time when I had to stop all pain medications cold turkey due to allergic reactions to inactive ingredient changes.  After being on them for so long, this was extremely difficult and dangerous.  I was mentally and physically drained.  My Mom suggested I try Reiki...she knows a woman who lives with a chronic illness of her own and is a Reiki Master to help others cope with their pain, both physical and emotional.  While this was not the first time I had heard of Reiki, it was the first time I seriously considered it as an option.  I figured it couldn't hurt, and I was DESPERATE for relief.  I was in so much pain I was in a wheelchair, where before I could walk without assistance.

When I went into her office for the first time, it looked like any other psychologist's office, so I felt at ease...it wasn't so "woo woo".  She spoke to me first about what I wanted to get out of the session.  I told her that I just wanted to feel more at ease, less pain, and more relaxed (I was super anxious from the withdrawals...depression and anxiety at the same time as horrible pain is a miserable combination!).  She had me lie down in a comfortable position on her couch and just close my eyes and relax.  I could FEEL the coolness from her hands, tingling where I hurt the most, and SEE beautiful colors that were so calming.  I noticed when the session was over, that the atmosphere in the room had changed from charged with my anxiety to completely calm and relaxed.  My pain level dropped from a solid 10 to a 6, which was amazing in just one session.

I saw her once a week, and we talked more and more in depth about Reiki, adding crystals into our sessions, noticing that they enhanced the pain relief and calmness I felt.  I became very interested in this mode of healing...I even noticed that as we talked about Reiki, MY hands started tingling.  By this point (a few weeks into our sessions, and off all pain medications), I was using a 3 wheeled walker instead of a wheelchair, and I decided to try to do a mini-session on my Mom, trying to replicate what I felt my therapist do to me on her.  It was like my hands were being guided to the correct spots by tingling and heating up where she was feeling pain or discomfort (my Mom also has SLE, Sjogren's Syndrome, and NMO). 

My Mom noticed that I had a "gift" for healing, and saw an advertisement on line to become a Reiki Master.  It was a "go at your own pace", type of course, so I wouldn't have to worry about deadlines for assignments or quizzes, which is my concern since my illnesses can be very unpredictable.  I agreed to try out the course since I WAS very interested in Reiki, and I am so glad I did!  Through this course, I not only became a certified Reiki Master/teacher, I also learned how to hone my skills as a healer, keep calm and emotionally balanced, self-heal, ask for help when I need it, and be more self-aware/intuitive.  I am also constantly learning new skills and techniques.

This alternative path has led me to my true path in life.  After feeling "stuck" for so long, it took one doctor, one suggestion that was a little outside the "norm", to shake me out of the rut in which I was living.  I am still on traditional medications, still see regular doctors, and am by no means saying that alternative methods are a "cure all", but I feel they bridge the gap between conventional medications and ancient (and new) alternative treatments.