Ah yes. . . "But, you don't look sick" is the response most often heard by lupus
patients around the world. Nothing could be more insulting than being labeled a "faker".
By all outward appearances sometimes we seem to look just fine. Maybe even a moniker of
"healthy" would be in order considering the bright red malar rash we wear unintentionally on our
rosy cheeks at times. We can save a fortune in blush!
Inflamed connective tissue and sever pain is not seen with the naked eye (not even by
"Superman" or "The Lupus God") and what if we actually looked as bad as we felt????
I'm not just writing this because as of this moment, my fingers are the only things that will
move, It is mostly out of sheer frustration over the lack of understanding between
"THE LUPIES" and "THE LUPLESS". On one hand, I wish family and friends could see it and
experience it and on the other, I'm grateful they can't. It is an ugly disease on the inside but,
sometimes it gracefully leaves your outward appearance intact.
That can be a blessing and a curse. It is hard for some people to take you seriously when you
look so well! It also, ebbs and flows like a roller coaster! You can't take this disease "One Day
At a Time" you have to take it "One Minute At a Time". It is that unpredictable.
I have jokingly said I would like the words "I TOLD YOU I WAS SICK" inscribed on my
tombstone. Humor has a way of covering the pain for a minute or two sometimes.
Several years ago, I could hardly walk. I was bedridden with a debilitating mystery
disease. Now, not only am I a black belt in Tae Kwon Do but, I can break three boards at a time. I also became scuba
certified and swam with sharks. Remission can be a reality. Sometimes fleeting but it can still be a reality for some of us
lucky ones.
This story is my humble experience. It is a compilation of different modalities I used in
order to regain some sort of a normal life in the midst of a serious health crisis. I'd like to
share my experience with you so that hopefully you may reap the benefits from my hard earned
knowledge qualification I feel like I need to relay my "testimony" is that I'm alive right now. Hey,
it may be anecdotal but . . . it worked for me. And I know if I was successful, others that find
themselves in a similar predicament can make it too.
I believe that life is a journey and everyone has a path. Yes, it's going to be rocky at times
because what do you learn when everything is perfect? We can only appreciate perfection when
we have adversity to compare it to. If you are anything like me, I simply won't learn the lesson
until I've had to pay dearly for it. I know I'm here to learn many lessons, but my highest goal
is to assimilate critical information to those who desperately need it. Plain and simple, if I know
something I think is going to help, I'm going to tell. I don't believe that you have to do exactly
what I did to gain the same results but, but it's a blueprint plan that you can follow or adapt to
yourself. I feel it's crucial to network this information because when it really gets right down to
it, we are all really in the same boat. We only have one body to use and/or abuse while we are
here. Rich or poor, if you don't have your health, you don't have much.
Talk about taking my blessings for granted, I truly didn't know how good I had it until one day,
I couldn't lift my arms. I gotta tell ya, it puts a real kink in your pursuit to be one of "The
Beautiful People" Also, much to my chagrin, there is nothing glamorous or sexy about crawling
either. I still remember being in so much pain that the only way I could realistically get to the
bathroom was on my hands and knees. To someone who was a former model and knew how to
turn on a dime, this was a real "step backwards" No pun intended.
Lying in that bed or "tomb" as I had come to think of it, I had a lot of time to hurt and
think . . . and then hurt some more. I wondered day after day how I went from having my face
on the cover of the world's most widely circulated magazine, acting in national commercials,
singing a top forty single, writing three number one Christian songs and writing a book that had
been on a best-seller list to being a virtual invalid. It seemed like somebody else's bad dream,
not mine. How could this happen to me? The me, who had been given such a charmed life?
Being the daughter of a movie star, born with a silver spoon in my mouth, attending all the
best schools, and growing up in "Hollywood" had set me up for success and nothing less. And I
really thought I was on a roll, until this mysterious illness started taking over my life. I always
had an iron will. You may verify this with my Mother, (especially during those difficult teenage
years.) Actually, the bottom line on me is, I'm as stubborn as an ox or (fill in the stubborn farm
animal of your choice). As a matter of fact, my best friend calls me "The G-force." I earned this
nickname honestly! My unshakable will has definitely been a double edge sword. It has caused
some conflicts at times but, in the end it literally saved my life. I knew I had just two choices. I
could either live . . . or die trying. End of story.
When I started getting sick, I really tried to ignore it and I hoped that it would go away. The
illness kind of crept up on me because there were a series of different symptoms that were totally
inconsistent. Then as time went on, a series of personal traumas plagued my life and basically, one
day an enormous straw landed on this camels back and I gave in to the illness. I didn't have any
more energy to keep trudging on. Every system in my body started to shut down and prepare to die.
I really believe that our bodies are like complex computers and our spiritual, emotional physical selves
are totally connected to each other. If one aspect of our life is out of whack, it is definitely going to affect
the rest of our entire being.
At the time, I was experiencing a lot of joint and muscle pain, tremors, temporary paralysis, migraines,
fainting spells, crying fits, rashes, exhaustion, and myriad of other strange and seemingly "unconnected"
symptoms. A normal cold turned into the cold from hell, a normal bruise left a huge ominous dark scar,
a normal cut would take forever to heal because it would usually get infected no matter how clean I kept
it. Really crazy stuff!
I went to see several doctors and they seemed as perplexed as I was. I actually had one
doctor say to me, "I have no idea what you have, but if you find out, let me know." Of course,
at this point I ran out of her Vanderbilt hospital office in tears believing that there was simply no
hope. I will never forget her callous demeanor. Basically, she could have cared less and it was
written all over her face. I was sure that nobody had ever heard of my strange ailment and I was
probably doomed. The unknown seemed to also "paralyze" my spirit, mind and sometimes my body
with fear, and my life seemed to spiral out of control. As I had given up on myself, everyone around me
gave up on me too. In the beginning, my husband tried to deal with it, but he just didn't have the stomach
for it all, found a "friend" at work and bailed. I think he expected me to handle this with a "quiet" stoicism like a man.
Oh no! I came at it kicking and screaming, not concerned about being brave . I just considered
the alternatives. None. So, I just I fought like a banshee and there was nothing brave about it.
The thing that most complicated the situation was . . . I didn't like myself either. Part of the time
I spent having a pity party for one. I thought, "How many times do I have to keep picking myself
up off the floor???" So far, it had been four times and still counting. I was searching for the cause
outside myself. I looked to blame someone or something for my crisis. It wasn't until I really took
a good look inside, that I found out that the cause started.
They would say "What?"
Then I would respond confidently, "lupus."
Then they would say "Well, how did you find out?”
And I would say boldly "I diagnosed myself from information I saw on the internet"
And of course, the conversation went completely down hill after that. Everyone was sure
I had lost it and considering how ill I had been acting, my credibility was shot. But, I had
an uncanny sense that I was right, and I firmly believe that no one knows you better than you! I
figured that I could just say "I told you so" to my skeptics later, right? As crazy at it seemed, I
took control because I wanted to survive. My main point here is that you can empower yourself
to accept responsibility for your well being and you can choose to do something about your
situation no matter what. You have many options and you can make deliberately wise choices! I
believe if I can do it, anyone can.
So, I told myself that I was not completely helpless, in spite of my illness. I had the right to
stand up for myself. I didn't want to be a victim or a martyr. Taking responsibility gave me some
real power over my circumstance. I believe God helps those who help themselves and all I really
had to do was pitch in a little. I didn't want to be held hostage by the constraints put on us by our
society, our drug companies, medical supply companies, etc. I needed to create courage
because I didn't have any. . So, I started using affirmations and telling myself that I had courage
and strength until . . . I did.
Okay . . . So now my parents wanted me to prove my home "diagnosis" through conservative
methods by going to a doctor and I agreed that it was a good next move as well. I found out
(through the internet, of course) which physician was the proverbial authority on lupus and then
my parents flew me out to Los Angeles to see him. I affectionately call my doctor, Dr. Daniel
Wallace, the author of "The Lupus Book," "The Lupus God."
Unfortunately, lupus is one of the most difficult diseases to diagnose. Ninety per cent of lupus
patients are women. The onset is usually between the ages of twenty and forty. There are more
Lupus patients than people with AIDS, Multiple Sclerosis, and several other well-known diseases
put together. It seems as if Lupus has had a bad press agent.
It not only affects the physical body, but it also can produce serious emotional symptoms as
well, due to inflammation of the nervous system or a chemical imbalance. Sometimes it can take
up to five years or more of monitoring the patient to get diagnosed because lupus is very
unpredictable and it flares and then lies dormant and then does it again.
Also, there is no definitive test for it. There are several different tests that indicate it but, the
patient also has to have at least four criteria out of eleven given. Well, I had tested positively on
several of the tests and had eight criteria out of the eleven and was diagnosed with mixed
connective tissue disease (which is lupus and other auto-immune stuff all mixed
together.) Fortunately, the criteria that I was missing were the ones where your organs just shut
down period. Well, now that I basically knew for sure what it was, I certainly wasn't going to
wait until my organs shut down just so I could get a text book diagnoses. Some action had to be
taken immediately before I deteriorated even more. I finally got my complete and undeniable
diagnosis after being monitored for over 4 years Lupus is like the opposite of AIDS. With
AIDS you have no immune response. With lupus, it seems as if you have way too much!
What causes it?
At this point, nobody has really answered this question definitively. It could be
that you are a woman between twenty and forty years of age, you are predisposed to it by
genetics or ethnicity, could be linked to hormones, Triggered by chemicals or toxins in the
environment or in your body, excessive sun exposure, it has something to do with metal dental
fillings, it's a reaction to preservatives in your diet, vaccinations could have triggered it and the
moon is in Aquarius. It also could be linked to some sort of mycoplasma (similar to a bacterium
but devoid of a cell wall with a membrane instead ) and could be just an infection, maintained by
a cheap antibiotic drug protocol without terrible side effects.
What is the traditional treatment?
To treat symptoms with steroids, antimalarial, immunosuppresives, anti-immflamatory drugs,
and if it gets bad enough, chemotherapy to kill the hyper-active immune system . . . Not a brilliant
prognosis at all.
I had taken steroids and the last resort, oral chemotherapy in the past and knew they were
extremely serious medicine with very toxic side-effects. They can blow you up as fat as a pig and
do a number on your psyche. But, it does have it's up side, it could save your life in a lupus flare
and you can vacuum your house at three in the morning!
I now like to subscribe to the cup half-full theory! I noticed that modern medicine
didn't have a tremendous amount of non-FDA approved alternatives to work with.
Anyway, during this early fact finding process, I kept thinking in the back of my mind . . .
there has got to be a better way, but like a proverbial sheep, I started taking the medicines
anyway. When you're desperate . . . you will grasp for straws. Was I at a dead end with no other
alternative? "No, this just wasn't possible, there has got to be a better way." I, the consummate
control-freak, said to myself.
The more I took the synthetic medicine the better I felt temporarily but, something kept
nagging at me telling me this was not going to work in the big picture. This was like slapping a
Band-Aid on a gaping wound. Eventually, it's going not going to hold. I was simply driven by
my will to get well and . . . of course, more importantly, to be right.
Okay, If I was going to fight, I needed a battle plan. First, I had to take the bull by the horns
and accept responsibility for my recovery, alone. Nobody but nobody is going to know what is
best for you except you. The bright idea that came to me was that what I needed was to use the
best of both worlds. Combine Western medicine and plausible alternative methods. I would use
the synthetic medicine and some other alternatives that looked promising and integrate the two!
First, I felt like I needed some really healthy nutrition. I really believe that we have polluted
and poisoned our water, air and soil so much that our food sources can't supply us with the
natural minerals and vitamins God had intended and we are in essence contaminating ourselves
instead of nurturing ourselves. Through talking to like-minded people over the phone, I was able
to find a woman in my area that saved herself from a debilitating stomach disease by eating
macrobiotic food. Now she cooked the stuff and delivered it to peoples homes as her business.
Smart Cookie! Again, no pun intended.
The food is kind of like Japanese food, but without much flavor. The food is prepared a special
way so as to preserve all of the nutritious value. It is pure, healthy and full of energy providing
nutrients. For whatever reason, this food gave me the needed energy to get to the next step,
literally!
If you need this service, you could call health food stores, new age book stores or a yoga school
and ask them if they know of anyone who might provide this service or maybe you could have
your mom, sister or daughter make several days worth of meals for you and bring them over.
There are several well-known macrobiotic or vegetarian cookbooks out there. Some diets are
void of necessary minerals and vitamins so, check with your doctor to make sure you are getting
enough of everything. And believe that where there is a will, there is a way. A better way!
Step two was to get to some alternative medicine. I found a wonderful chiropractor who
blushes when I call him "a healer." This doctor is so low key I never knew what hit me. Many
chiropractic doctors incorporate different techniques into their practice. Two techniques I found
absolutely imperative were applied kinesiology, which is diagnosis using muscle testing, and the
"Network" method. It would probably only entail making a few phone calls first to inquire as to
whether the chiropractor used these. Also, having a chiropractor that works with homeopathic
medicine is also very important. Even some medical doctors are jumping on the homeopathic
medicine bandwagon. My western medical doctor included!
Western medical doctors and chiropractors have always been in a turf battle for various
reasons. I truly believe medical doctors are healers and miracle workers. But, they can't be
expected know everything on the planet. They are somewhat restricted by what they were taught
in medical school and what is FDA approved. They must be respectful of powerful insurance and
drug companies. Using the best of both worlds made a lot of sense to me.
What if there was a computer that could diagnose your illness painlessly within a matter of
minutes and then tell you what supplements you need in order to heal? Well, guess what? There
is. It is called Interro or Aphazix. I have been on it many times and I can tell you there is no
doubt in my mind that it works. Many chiropractic doctors use this diagnostic too.
My chiropractor diagnosed my lupus long before my western medical doctor did.
I had not said a word to my chiropractor about it and it came up on a printout from the
diagnostic computer. It also picks up any other diseases, chemicals, viruses, bacteria, metals, etc.
in your system as well.
I won't profess to know it works but, time after time it has been totally accurate on me. I have
always heard "well, if it's too good to be true, it is" Well, I'm sure if we went back in time and
told those folks that we can take a persons damaged heart out of their body and replace it with
someone else's healthy heart and it would work . . . they would think that was too good to be
true too, and then they would burn us at the stake.
The skepticism comes from lack of knowledge, that's all. We can't expect man to be all-
knowing. I believe we have already been given the knowledge and the tools we need but, we
have gotten away from the cheap natural resources that God gave us because of the financial
potential of synthetic medicines.
Drug companies are a big business. Don't get me wrong, I'm not trying to intimate that there is
some kind of a devious plot going on or anything. The vitamin, herb and homeopathic business
are very lucrative business' as well, my point being is we need to take responsibility for our
own well-being and there are hundreds of ways that we can do that. Not just one way or the
other. Again, being accountable is empowering.
Anyway, because of this chiropractor, my real physical healing started to kick in. Through
the diagnostic computer, being adjusted, homeopathic medicine, applied kinesiology or muscle
testing, balancing my energy, I was on my way back from the brink of death.
Slowly but surely, I was getting a little stronger each day because of the energy "diet" and
the work my chiropractor was doing on me so I decided it was time to try something physical.
So, I mustered up as much bravado as I could and signed up for yoga classes. Well, after being
in bed so much my muscle tone and my body was trashed. Not to mention the fact that I was
dealing with a considerable amount of serious weight gain due to inactivity and steroids.
Yoga was the perfect transition from not being able to lift your arms to slow motion. It focuses
on breathing and stretching which is just what I needed. It felt awkward and difficult at first, but
it really became second nature after a few times. It bolstered my strength and spirit enough so
that after a few months, I was able to try martial arts.
After attending a free Tae Kwon Do class. . . . I joined. I love marital arts because it is
short term goal oriented, in that you are always working toward your next belt and it is more like
a cultural learning experience rather that just going somewhere to sweat.
In conjunction with being on a macrobiotic diet and doing some exercise I came to discover
that I must have some sort of chemical imbalance as far as my appetite was concerned. I came to
this conclusion due to the fact that nothing diet-wise had ever really worked for me except
appetite suppressants. I had really tried everything in the past and nothing was ever really
effective. So, with diet and exercise, I made a conscious decision to get some Western medical
help and I went to a diet clinic. I was monitored carefully, given a strict diet program and
weighed once a month. This predominantly mainstream approach worked well for me in this
circumstance. I lost weight and became more mobile in the process.
During this ordeal, I was reading everything I could get my hands on that had to do with
health, spirituality, relationships and self-help. The material I got a hold of had a strong impact
on my recovery.
Reading was very therapeutic. It filled temporarily and filled me with inspiration. It fueled
ideas and I've always believed that knowledge is power. It was one of the most empowerin
things could have done. When you are housebound you feel like you are a prisoner. Reading is a
way to escape the confines of your bed relatively inexpensively for a little while.
I found praying and meditating also calmed me a great deal. When you think you are going
to die, you naturally want to get in touch with your personal "higher power." Having written
Christian music for seven years, I had already felt like I was somewhat in tune with God, but
there is nothing like the threat of death to really humble you before him. Of course, when you
are disabled, it can be difficult to make it to a physical place of worship. There are several pastors
on television that I find so inspirational. You can order their sermons on cassette and video tape
as well.
Now from "The Great Counselor" to "a great counselor." I found a licensed social worker
through my internet support group that would counsel me over the phone. Because of the
inconsistency of my illness, it was difficult at times to make appointments in advance so, I
thought that counseling at home might take the pressure off me having to go somewhere for an
appointment.
This was a real saving grace. I didn't know that this type of thing was even available, but it
really worked for me. I happen to find someone that was adept at phone counseling and she was
wonderful. She gave me a couple of mental exercises to do on my own that really seemed to
have an impact. She had me make a list of all the things I had accomplished so far and what my
goals were in the future. Surprisingly, I came up with two extremely long lists! There was
something about seeing it on paper that legitimized it all. This was one of the best things I've
ever done for myself. Telephone counseling was a great option I didn't even realize I had.
As I proceeded through this process, one day at a time, it dawned on me . . . I'm still here.
Even more amazing was the fact that I was actually functioning again. I had friends again and
most importantly, I became my own best friend. I could get through the day without collapsing,
crying or hurting beyond my threshold of pain, and I had short term goals I was really looking
forward to. I had a realistic prospect of a future. That was a miracle to me after coming back
from the depths of defeat.
Fortunately, I had the time, resources, will, and parental support to investigate a
Significant number of treatment options and the biggest surprise to me was, everything I tried . . .
Worked!
Actually, I tried a multitude of other things as well like reflexology, neuromuscular therapy,
aromatherapy, hydrotherapy, colonics, healing touch, a combination of amino acids I
found in Dr. Ronald Klatz's book about human growth hormone, an invention from Hulda
Clarkes book "The Cure For All Diseases" that emits a high frequency that kills parasites,
worms and flukes, and an amazing vitamin C compound developed in Romania that is
revolutionary.
I know that all of these things had a positive effect on my recovery.
There is a reason for that and I'm going to conclude that it is because, I wanted them to work!
The mind is a powerful tool. It makes sense that if the subconscious mind can tell the body
to make a scab and heal a wound, it has the potential to heal anything!
I wanted to live and I took control of it, instead of "it" controlling me. All the doors are
open, you just have to desperately want to walk through them.
Sometimes it feels as if it has taken me a lifetime to get back what I thought I'd lost. Well, it
was really just a nanosecond with regards to the big picture but . . . astonishingly enough, it was
a life that I saved . . . my own.
Not only did I regain my health, but for the first time I earned my self-esteem. It wasn't a
false sense of self that I had always felt that I didn't deserve. I learned how to be my own hero.
And thankfully, the journey continues.
