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Ilene’s NMO Story – Lessons Learned; Resilience Cultivated

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

I’m Ilene, the youngest of seven children.  I come from a family of school teachers and musicians. I love board games, musicals, plays, happy movies, skeet ball, Tower of Terror and having other people cook for me. My dream life was to be a pianist, a teacher, get married, travel, have children, be the fun house on the block, where all the kids hang out, and my kids’ friends call me “mom”. ‘Cause I’m so cool and my home is so fun. Travel with my kids for their development and education. Everything was going as planned, I got my BA degree and started teaching school, then I met the most incredible man.  Had 3 beautiful children. Life was great! Right on target with my dreams.

1997 I had just had our 3rd baby. When she was 6 weeks old, I went blind for the first time.  My other children were 2 and 4. The blindness started with a black spot in my right eye and grew over the next couple of days.  I also had a stabbing feeling in my eye. On a Friday, I went to the doctor who said, “It’ll get worse, but no worries.” Over the weekend, it went black and my left eye started to have a black spot. I went back on Monday and he freaked out, “That’s not supposed to happen,” he said.  I was like, you said it’d get worse and not to worry. He threw me in the hospital looking for a blood clot.

My 4-year-old made me cry when she asked her dad, “Is the hospital mommy’s new home?”

My roller coaster of health began. From there the symptoms got worse. I started feeling electrical shocks throughout my body, then I was in pain all the time. I was using steroids like candy and large doses of ibuprofen. I had blood work, a spinal tap, CAT scans, and MRIs of the brain that all showed nothing.  However, based on symptoms, I was diagnosed with Multiple Sclerosis (MS). No meds were offered. Since the cold seemed to make me worse, we moved from Colorado to Georgia.

2000 I found natural medicine, (I was brought up being told it was a hoax, just to get your money) and through a couple of experiences, with chiropractic and acupuncture, I started to believe in that, maybe . . . not a hoax. I started taking lots of supplements, seeing a chiropractor, acupuncturist and getting energy work. I also learned about emotional and spiritual stress and started working on those parts of my life.

2001 I went 100% natural, as acupuncture brought my vision back to clear. I had clouds on my eyes after a loss of vision prior to that –  I could see but it was through a white cloud. I thought medical intervention isn’t doing enough for me, and acupuncture helped me get back to “normal”. In April, I started going blind again and did every “natural” thing I could, but after two weeks I went to the doctor and got steroids.  By November, only my left eye came back. My right eye has been black ever since. Also, this year, I learned this: Lesson (at that point): natural doesn’t stop the disease. There’s a balance between natural and medical.  Lesson:  when you feel an inkling of a relapse – SEEK HELP.  Let them think you’re crazy or a hypochondriac.  If you are having one – the damage is hard to recover from. Get medications/therapies immediately.  It is much easier to stop it when it’s in its beginning than 1-2 weeks in.

The future Ilene would tell you this too.  I ignored the symptoms, my body was funky – but I could feel ok with steroids and ibuprofen.  I had every excuse in the world to not acknowledge my body was doing funky things – I had a husband, a newborn, a 2 and a 4-year-old.  My newborn was having issues herself. There was no time for me. I was taught, “Just get dressed and ignore it, it’ll go away,” “Don’t acknowledge it, nor own it, because then you will have it.” “It’s all in your head, it’s psychological.”  These thoughts kept me in denial. It’s like saying “it might rain” means you will make it rain. That’s absurd. But I said, “I’m not sick, it’s all in my head” (actually it was in my neck LOL.) Be real, acknowledge the cards you’ve been dealt and ask, “What do I do now?” “What are my options” I asked the why questions: “God why? What did I do wrong? Did I sin? Did I offend you? Jesus heal me, you healed others, I’m a good person. What’s wrong with me?”

2002 We then moved to Florida for a job.  That’s where things got worse. After multiple relapses and hospitalizations, a neck MRI found lesions in C2-C7, many bi-lateral.  They finally offered me meds, as they finally found demyelization. I started with Betaseron. I still had relapses about every 6 weeks, and was taking more steroids than one wants to have. That year I was bedridden; I prayed for God to take me.  It wasn’t fair for my kids, ages 5, 7, and 9, and my husband to have to deal with me. Plus, I had lived a great life and it was okay for me to die. I wanted my kids to remember a good mom, not a sick one.

I also thought frequently, “If I was a horse they’d shoot me to be kind, to put me out of my misery.  But no, I’m human, they feed me drugs. At that point, I NEVER could have fathomed that life could get better and not be a downward spiral.

Clearly, I was on the wrong drug. (I believe now it may be what caused more relapses.)  The year was tough – I had massive painful body spasms.  When I felt one coming on, my kids would find a wall and hold me up against it, or I’d sit on the ground as fast as possible to “ride it out.”  After Baclophen and other meds, they still occurred. My chiropractor at the time said, “Let’s try ultrasound.” She did my back, and I had a massive spasm during it, but then they were over for a few years.

At around this time, my right arm went limp, and it seemed my brain had no awareness of it.  It first was stiff and “frozen,” then after physical therapy it went flopping like the breeze at my side.  I was put in a sling and wrist brace to not hurt my lifeless arm. This is when the school bus driver asked my 8-year-old after seeing me, “Is your mom dying?”

Luckily, I regained the use of my arm.  Then one night I went to bed and the next morning I couldn’t lift it above my head.  (It hasn’t gone above my head since, so now I have muscle atrophy and my shoulder droops which puts my neck in constant pain.)

I also remember holding a cup for my daughter and I couldn’t release my fingers. My daughter peeled my fingers off the cup.  And that wasn’t all. I wanted to say I was having a relapse, but I couldn’t get the words from my brain to my mouth. My bowels were out of control at this point.

My 80-year-old mom, who was in better health than me, came to help.  She dressed me, fed me, took care of my kids and chauffeured me to doctors. At one point, my body collapsed on itself and my ankles wouldn’t hold me up.  I now call it “Wet Noodle Body”. My mother took me in and then took me home from the hospital.

Things were tough. I didn’t see any way out. We moved again, this time to Arizona, as a natural doctor commented that the humidity might be part of the problem. So, after just one year in Florida, in 2003 we moved to Arizona.  My new neuro, learning of my relapses decided to change my medication from Betaseron to Copaxone. I still had relapses.

2003 I found a new naturopath in Arizona who provided me with supplements and therapies* (see the list below). So, I did medical and natural and just dealt with the relapses and did whatever I could for recovery.

2005 One day I got a card in the mail that said, “Come to the Mayo Clinic.”  Though I wasn’t searching for different answers and I thought “this is just my life,” something inside me said, “Why not?” So off to the Mayo Clinic I went. Within five minutes of hearing my story, the MS doctor shooed me out of his office and said, “You don’t have MS, you need to see my colleague.” I then met Dr. Wingerchuk and had a $3,200 blood test (not covered by insurance) and was diagnosed with NMO.

This diagnosis made me very happy. The first thing I read was, it kills you. Yeah! That made me happy because MS just takes your body and can put you in a vegetative state. I didn’t like that life outcome. I prefer living the best I can, and then I can go. I had no hope of getting better so I preferred a quicker ending.   

After some more relapses, I decided I was wasting my money on natural and went 100% medical. Plus, I wasn’t willing to change my diet and buy the expensive supplements the natural doctor kept recommending (with so few results).  I then tried many medications, IVIG, CellCept, Imuran. Of course, I had Baclofen, Tegretol, and others for side effects. Now I question if the side effects were from the drugs or the disease? I don’t know. I was challenged again with body spasms and pain. I owned my own wheelchair and walker and I was in and out of them frequently.  My feet were “frozen”, I couldn’t bend my toes or move them individually. No more piano playing, traveling, my bladder was fickle, and just going out was stressful.

We need some humor in all this –  We went to the Grand Canyon and I was being pushed on my walker (It’s one you can sit on) to see a view.  The terrain was rough and plop! Over I went. This triggered a body spasm – a crowd gathers, and through the crowd a man says, “I’m a doctor can I help?” Totally nice and willing. He was a dentist. (LOL.) People are awesome! Lesson: Some of the blessings of this process for me have been, learning to ask and accept help, not being embarrassed I can’t do it on my own.  I was raised to give give give, say yes yes yes. I’ve learned to honor my body and life and say no, and help please. I have met a lot of gracious, kind, loving human beings out there.  I also learned that for someone to give, someone has to receive. Can you imagine, me giving and no one to give to? I loved giving and sharing. It was my turn to learn to be humble and receive. Be ok saying, “I can’t do it. I am grateful you have helped me.”

I remember needing to get my kids from school, but getting from the parking space to the front door was daunting – I parked and would sit in my car for 15 minutes saying, “you can do this.” Then I’d walk to the door and sit down in the lobby and gather myself, then talk to the secretary.  At Walmart, I’d use the electric chair (THANK YOU whoever created those and made them available to us.) I would never have been able to shop – the energy to just walk through the store would wipe me out for two days.

Part of the medical process back then was that a medicine had to fail to try the next expensive one.  But I really didn’t want to have Rituxan as it was a chemo drug. After some time passed, I went back to my natural doctor.  He took one look at me and, “What are they doing to you? Are they killing you?” I looked really bad, I had lost weight and was 20 pounds underweight and my eyes were sunken in. I went back to my lesson of balance.

So my life was relapse  . . . recover, enjoy it while you can, then again relapse . . . recover.  A hamster wheel at its best. During this time, I was hospitalized with infections.  I’d live life as fully as I could until the next one. I even had the paramedics at my home as I was on IV steroids so I had a PIC (Peripheral Intravenous Catheter) in my arm for the five days. I took my regular medication (a shot) and put it into my iv line to save the pain on my skin.  Now for those of you who know this, (I didn’t) certain meds are meant to go into the blood stream others are meant to go through muscles. I took a “muscle” med and put it into my blood stream. Within seconds I couldn’t talk, couldn’t think, and I was burning up.  I was in my PJs and 911 was called and in a few minutes, the best-looking firemen you’ve ever seen are attending to me. (LOL.) Everything turned out okay. But Lesson:  only take meds the way you are supposed to.

2009 The mother of all relapses, my entire body turned to a wet noodle.  I couldn’t do anything. Luckily, we had touch-screen phones, so I would curl up my finger to just touch the screen.  As my finger extended, it would collapse. Insurance wouldn’t pay for a hospital stay longer than seven days, and the iv steroids were over in five.  So then I was moved into a nursing home. I couldn’t go home – I needed help for everything. I also did not know if I’d ever walk again. Well as it sometimes does, time heals, (Our bodies are AMAZING.)  After lots of treatments and supplements, I did walk again, and even eventually drive. My days were mellow – just survival. Do a task and rest.

2010 I found a therapy that altered my life – AquaStretch- where they put you in water and stretch your muscles.  At this point I was back and forth in a wheelchair and walker. The body spasms were insane – if I moved from a sitting position to standing, I’d have a body spasm.  If I picked up a gallon of milk, I’d have a body spasm. I’d feel a burning in my right ankle then boom, it’d hit. Any jerky motion – quick turn of the head, trigger.  I took Tegretol – if I took the full dose I was a zombie- so I took half which lessened the duration and pain associated with the spasm. AquaStretch was able to release my muscles like no chiro nor massage was able to do, and the results were long lasting, if not permanent.

Two more experiences: 1) I felt a spasm coming on in my bedroom.  My bed was a tall one. I went to lay down, but ended up kneeling by the side of the bed.  My head was face down in the covers and the spasm hit. I was frozen. I felt like I couldn’t breathe and thought I was going to suffocate.  Finally, the spasm relaxed and I was able to turn my head until it finished. Crazy things. 2) I was out with my dog and stepped wrong on the sidewalk.  I was down. The spasm hit, I had to wait for it to be over, and then I couldn’t move. I didn’t know it then, but I had broken my right ankle. I lay there, in the middle of the day, no one was around, screaming didn’t help. Finally, a car came down the street and luckily the driver stopped.  She got help for me. But here’s the thing. Remember I said, I felt them coming on with a burning in my right ankle? That was my last spasm. Between the AquaStrech, supplements and breaking my ankle. They were gone. Haven’t returned since. Now don’t go breaking your ankle. That was my path, for whatever crazy reason.

During this time I also did emotional therapy, I removed the mercury from my teeth, did hyperbaric chamber, colonics, I saw many different kinds of energy workers, I detoxed my body and my lifestyle. I got rid of chemicals around the house, changed my diet. Gluten, dairy, soy, peanut free. I was going for anything that claimed it’d help.  

2011 I went on a study for Eculizumab – the relapses stopped.  Miracle. YEAH! Six weeks after the one-year study was over, though, I had a relapse.

2012 Rituxan was approved for me. My relapses stopped, YEAH!  But I was sick all the time. I had a lingering cold for ten months of the year. I spent nine hours a day on the couch and that was a good day!  Also, I joined the ‘canker sore mouth club’ and ‘UTIville.’ I was taking handfuls of herbs, was in the chiropractor’s office 2-3x a week just to survive.  The only way I could kill the canker sores was through a laser my dentist used.

Also, that third baby I had –  she turned out to be autistic, so not only did my family have me, we have her, an angel, to accommodate. Keep in mind that all of my kids grew up with a sick mom.  This wasn’t what we’d envisioned or dreamed of.

A lot of emotional challenges come with that. At this point, by stopping the relapses, Rituxan allowed my body a break, and it was doing its best to get better. Even though I had side effects from the Rituxan, I was okay with it.  Because I have been so low that, just getting out of bed, dressing and feeding myself was a great day. Anything else was “icing on the cake.” I’d do one task, like load the dishwasher, and rest for an hour. Sweep the floor, rest again.  Go to the doctor, and have to rest for hours. The energy to leave the house, ugh. Call me “1 errand Ilene.” One errand and I was back home. Not only the energy, but also the bathroom issues I had at this point. Let’s just say, it’s not that easy to use a public restroom.

I look back now and can see that my self-esteem and self-confidence were shattered. I wasn’t in control of my health or my life.  I was a ping pong ball to the whims of this disease. But Lesson:  value each moment. It is soooo real, as with this disease, a body function can be gone the next time you wake up. Enjoy the good days, family, and the beauty of nature and people. I’ve learned how to receive and be grateful, to a depth I hadn’t experienced before. I found myself relying on others instead of being the “super human, friend, wife, mom,” saying yes to everyone and everything, trying to prove my worth and value. I learned to go out, when I wasn’t “beautiful” because shopping needed to be done or a doctor visited. Make-up and hair do . . . Oh well.  It was my best that I could be in that moment. I have A LOT more compassion for others and love for them, with whatever is going on in their lives.

2013 between the Rituxan and supplements I was doing better. I got well enough that I started teaching in a preschool 2.5 hours a day, M-F.  Exciting! That would wipe me out, but it was great to get out again.

They say a disease is in your body 10 years before you recognize and identify it. I can look back in my 20’s (I was 30 when NMO hit) and identify signs – things I ignored and things that happened and disappeared – no cause for worries.  So, I’m not only undoing the relapses and disease process, I’m also reinventing and changing my lifestyle. Whole foods and a non-toxic environment are things I can control. Fast food is just a memory from the past. Eating at home. Learning to cook. Honoring my body – when it’s tired – stop.  99% of things can wait until tomorrow.

2014 November my life changed, I didn’t know it would, but it did. My natural doctor found a natural product for my autistic daughter, and he told me try it, “see what it does for you.”  

Results have been phenomenal, unbelievable. I had learned to be happy with my life the way it was. It was better than a nursing home – after all, I could dress and feed myself.  Now, four years later, I am living life vertical. My dreams are out of hiding. I am traveling again, even by myself. I always had hope of something better, but NEVER believed it was in the cards for me. This disease defined my life quality and actions, living in fear of: What if?  Is that a symptom? Is it happening again? Do I need a doctor, a medication? I always had someone with me, “just in case”. If I traveled it was only back home or to my sister’s, where I had a network of help. Every single time I returned to my home, I’d have a relapse. It was scary.  I had quit committing to the future, as I never knew if the future would be a good or a bad day. I was trapped, afraid, and dependent, and I was okay with that.

I did find a natural product that is able to give me a higher quality of life.  Am I cured? NO, but I’m living life. I’ve learned that my “lesson” that natural won’t work has been proven wrong. YEAH! There is a balance between medical and natural, and science has helped us in both categories.

As of November, 2018, some of my “states of being” are gone, some are diminished and some are just a part of my daily life. But what I’ve found, that even with the “handicaps” (residual damage) when you feel good inside your body, you can deal with the challenges of daily tasks, and honestly don’t even notice them, as they are second nature now.  I dry my hair differently, I use an electric tooth brush and special flossers. I am extra careful when driving. I rest if needed. I fight the battles that need fighting and the rest? Not so much. Relationships are what’s important and even blind and paralyzed, I have a gift to share. I know I am of value and needed in this world.

All this put my family into tens of thousands of dollars of debt, for years. Anything to stay mobile, right? Recover after relapses, right? We did whatever it took, we didn’t know any other way.   I have fought with insurance companies saying, “You come live my life and deny me.” Many trips and damaging falls.

I truly believe, if I had only done what the doctors had said, I’d be wheelchair bound and in that nursing home, by myself, hoping for visitors. I truly believe there is a balance between medical and natural, and that our bodies are amazing and they are fighting for us every minute to be our best!  You get a cut and the body takes care of it, break a bone, get it set, then the body takes care of it. Why then, oh why wouldn’t the body be able to take care of an organ, or a nerve or cells that are dysfunctional? It needs the right environment, and help.  A plant needs the right soil, water and nutrients or it dies. If we can recognize dysfunction and stop it in its track (with medications and therapies) and change the environment, is it possible? Probable? With such a devastating disease? I’m okay with a miracle. =)  

I’m very blessed and I am a better person today than I was 10 or 20 years ago.  I just wish I could have become this person on a different path. 

States of being

Therapies, lifestyle and medications I’ve tried- (that I remember)

Acupuncture Emotional work No pesticides inside of house
Alkaline Water Essential Oils Only Wild Clean meats
AquaStretch Eat out less Organic As much as possible
Baclofen Exercise Orthotics 3-kinds
Betaseron Foot Detox baths Park in the garage, roll my car windows down
Biohacking Gluten Free Psychics/metaphysical
Brain Dr. Hand soap- essential oil one

Non-toxic hair care

Pots and Pans detox
CellCept Herbal Supplements Prednisone
Changed diet Honor my body when I’m tired I rest Rapid Eye Movement Therapy
Chelation Hyperbaric Chamber Commercial Reiki
Chiropractic Hyperbaric Chamber Home Model Removal of all chemical cleaning products
Cold Laser Therapy Hypnosis Removed all mercury and gold from my mouth
Colonics Ibuprofen Rituxan
Copaxone Imuran Sauna/detox
Counseling IVIG Non-toxin skin care
Craniosacral Kinergetics Solumedrol
Cupping Kinesology Soy Free
Dental mouth guard Laundry soap Subliminal Recordings
Dishwasher soap Less processed foods Tegretol
Dr Clark Products Less sugar The Work of Byron Katie
Dr Schultz Protocol Long Term low dose steroids Toothpaste without chemicals
Eculizumab Massage Touch For Health
EMF/Diodes Meditation/Spiritual Practices Ultra Sound Professional and Home Model

Published December 26, 2018

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