The other night I bought a present for a friend of mine. At the last
minute I decided to give the gift to someone else. Now I'm regretting
that decision, before I spent money on the gift certificate I debated
whether I should put that kind of money down. A while ago I watched this
video about the head heart connection, essentially the video encourages
people to do what their instincts prompt them to which is what I ended
up doing.
When I arrived at work the other morning there was a
present waiting for me. It wasn't wrapped, it used to belong to someone
else but it ended up on my desk because a friend of mine put it there.
I've been doing a lot of thinking recently. Some of you already know
that I was diagnosed with several auto immune disorders. I've been dealing
with the physical effects for years, my physician told me I had tested
positive for two conditions, handed me a pamphlet on Sjogren's syndrome
and
walked out.
I left that appointment with five prescriptions and
at least that many referrals. Since then I've had an echocardiogram, a
pulmonary function test and I survived a consultation with a
hematologist/oncologist. Auto immune symptoms can mimic those of cancer
so people are strongly urging me to take medication. Once the managed
care services department learns that my insurance company will pay for a
CT Scan I'm supposed to call and make an appointment but I
don't think I'm going to.
The past few weeks have taught me
that it is easy to get drugs and difficult to get treatment. After the
rheumatologist explained that one of the medications she was prescribing
could affect my vision I asked what would happen if I didn't take it. I
doubt the hematologist was trying to scare me when she explained that I
could be crippled within two years because auto immune diseases can
strike with considerable rapid force but I think there is another answer beside drugs.
A
woman in the medical records department thought I was a minor. My
heart, lung, liver and kidney tests came back normal. My cholesterol has
dropped and my vitamin and mineral levels are good except for a Vitamin
D deficiency. Lately I've been considering the difference between a
healthy lifestyle and a strong body. One website I found gave me words
to ponder when an article explained that people in your family may
accuse you of being lazy because you might look fine on the outside
while inside things are not so good.
It is difficult to explain how auto immune disorders change virtually
every aspect of your life. Every morning I wake up feeling much older
than 36. I don't wear makeup or put products in my hair,
people have asked what I put on my skin, they laugh when I say as
little as possible but if I stripped off my clothes I could show them
skin irritations that the dermatologist wants to treat with steroid
creams that really don't help. My digestive system doesn't work the way
it should so I wonder, am I gluten intolerant because my body attacks
itself or has do I have auto immune disorders because I can't absorb the
nutrients my body needs to function properly?
Apart from the
hematologist not many of the practitioners I've seen have been
empathetic. They hand me diagnoses without educating me and let me leave
without giving me any practical advice on how to cope with a diagnosis
that is new to me. No one has discussed my diet, not even my GI doctor
who
ordered a series of tests that I don't think I really needed. I thought
he was going to check for damage of the villi, when I asked about that
he told me that if your body reacts predictably to gluten exposure you
have to accept that a patient is gluten intolerant and further testing
is probably not warranted.
At work my department acquired a
guy who is going to be with us part time. Monday through Friday I wake up, go to work, manage
to get through each day and come home an exhausted wreck. For most of
their lives my children have not had the kind of mother I wanted them to
have. When my youngest was a baby we took her to practically every
specialist under the sun. My oldest daughter was not a healthy child, I
see things in them that concern me however when I asked about my
children and the genetic link to auto immune disorders I was told 'not to worry about it'.
I was told not to worry when I had to schedule
an appointment at the Vince Lombardi Cancer Center. I've walked around a
brand new medical complex wondering at the degree of unhealth among
health care professionals. Before my former boss had breast cancer,
before my friend's husband told me that he had cancer I knew that those
people were not healthy. I may not have the formal training a lot of
others have but I can recognize when things are off. That bottle on my
desk represented an effort on the part of another. It was for me and so
was a note I found the other day.
People at work have been
supportive however I have to find some way to explain that working part
time is what will be best for me, them and my family who is lacking some
of the things I could be doing for them. Mother's Day came and went, my
mother hasn't done much to really support me through any of this and
that hurts more than I'd like to admit. My mom asked if there was
anything she could do. I could ask her to release me from my debts, I
owe her money for health insurance premiums and I typically don't go back to
things I've written in the past but I could laugh hard about how worried
I was about the medical expenses I had formerly.
A good
friend of mine who happens to be a customer told me that she was
diagnosed with ovarian cancer and interstitial cystitis. In her home
country she was a veternarian, now she is an orthotic and mastectomy
fitter as well as a good sounding board. She gave me some tips and some
supplement ideas. Talking to people like her is what makes work less of a
job and more about reaching out to people that I can connect with.
One
of the outside sales reps put his number on an account that I had been
working with. I get frustrated because I feel like my successes are not
being recognized while my habits and work ethic are being scrutinized.
Things do unexpectedly work out however I wish that people would
understand that the way I feel has a dramatic effect on my ability to
communicate effectively. My department is getting a guy that asked me
out. Another coworker of mine said that I must have encouraged him which hurt because I don't believe that I did.
A
book that I read a while ago had a character who lost substantial
amounts of weight. In the past I thought that being thin or having more
money would solve my problems. I thought that I was lazy and I accepted
other people's ideas about me and my life. Lately I've been standing up
for myself more. I haven't told anyone to fuck off yet and maybe I won't
because I am suffering and I think to myself, maybe other people feel
the way I do. Other times I decide that I have to choose my battles and
those people aren't worth the time.
Always I have this vision
that one day my body is not going to hurt. I think about being able to
run and jump or type or sleep without pain. I dream about having
enough tears, functional adrenal glands and preserving my girls from
things I've experienced. My close friends at work are willing to walk in
the shade with me, I'm supposed to stay out of the sun because that can
cause a flare up which makes everything worse.
Through all of
this there have been times where I have felt at rest or at peace. I
don't really care if I do have cancer, if I do then I do and I don't
think that I would do chemo or radiation because my body can't handle
anything else right now. Every time I hear a new term I go through the
pain of denial, I rage, I grieve and eventually I start reading up on
things because I want to be an informed patient. I've learned a lot
about my body, health and healing which has helped me in ways I didn't
think that it would.
My children have been dealing with this
as well as they can. It's sad that they are used to their mother crying
in the bathroom and going to bed before they do. I'm a freak about the
things I eat and I try not to let that interfere with their diets too
much because undue stress can aggravate you without actually
accomplishing anything. I have relaxation CD's that don't get played as
often as they should. I try to walk and I'd like to get back to the gym
but I need someone to evaluate me and help formulate an exercise program
that is challenging, strengthening but not exhausting because my body
can't be relied on to tell me when it's had too much.
I've
been trying to get to church on a more regular basis. I've prayed that
God will give me answers if he doesn't want to send healing my way. My
massage therapist told me that I am on the right path and my nurse
practitioner has given me some good advice and reminded me that years of
damage takes years of undoing. Overall my life has changed for the
better. At times like this that is hard to remember but now I am beginning to realize that
my job is just a job while my children will only turn ten once.
I
could go blind, I could eventually end up crippled but some of the
things I've been taking have reduced the swelling and given me a measure
of pain relief. In a way I realized that I am tougher than I thought I
was. I've learned to treasure the soft, the gentle, the restful and
peace filled. Hurts of the past have gone because I don't have energy to
hang onto anger that only damages me. My voice has improved, before I
learned why my left ear doesn't work properly I didn't know I couldn't
hear things the way other people do.
Singing is fun even if
I'm just learning how to embrace a life that includes music. I want to
believe that I will continue to discover new talents and it has been
interesting to see how some of my fictional characters have expanded and
become more concrete as I go through this. I'd like to write more but a
big part of this is recognizing my limits so this is goodbye for now.
Even though the diagnosis is new the symptoms are not so it is strange
to me that I feel so differently about myself. I'm having trouble
reconciling what I know about what I thought I knew so if I am not
myself I guess that's the only explanation I have.
Until next time, peace be with you.
j