Ten years ago I was in the hospital with my newborn daughter. Nothing
about having her went the way I had anticipated but she was healthy and
she seemed happy until she was about six weeks old. I can remember
taking her in for a two week checkup and having a conversation with the
lactation consultant about how she was not gaining weigh the way that
she should have been. My daughter's pediatrician was wonderful, she put a
lot of my fears to rest and my first summer as a mother was one I will
always treasure.
Since I have sensitive skin I didn't use a lot of
the typical baby products on the market. I found a company called
Terrasentials and I took a lot of flak from people in my family about
how costly those soaps and oils were but if Johnson and Johnson products
made my nose itch and dried out my hands there was no way I was using
them on skin that was less than two months old.
During my
daughter's first fall she caught her first cold. Being a first time
mother I freaked out and called the pediatrician. The nurse told me to
make sure my baby was hydrated and not to worry unless she developed a
fever, severe cough or her symptoms didn't improve after a week. A
couple days later I dropped my daughter off so my mom could watch her. I
went into the room where she was sleeping and had a hard time believing
the color of the residue that was dried on to her cheek.
That
first ear infection was horrible. My daughter screamed when we tried to
give her antibiotics. She didn't want to eat, she couldn't sleep and I
ended up quitting my job since I couldn't work and take care of her.
After that things seemed to calm down. My daughter wasn't very big, she
had problems with eczema but dry skin runs in my family so I tried to
keep her as moisturized as possible. When my oldest was eighteen months
old I had a second miscarriage. I wasn't very far along but it was
upsetting, I was able to conceive again but I was constantly sick and so
was the daughter I had.
Both of my children had very rough
beginnings. My youngest had a cold at her two week checkup. She was a
calmer baby than her sister but I was exhausted by the demands of two
children. I lost quite a bit of weight after my youngest was born but it
was because I didn't get enough to eat or enough sleep. My youngest
started getting ear infections when she was six weeks old. I took both
girls to the zoo and in to see the pediatrician that afternoon because
their eyes were draining. We came home with more antibiotics and some
probiotics to help counter some of the side effects.
When I went
back to work people told me that it would be good for me to get out of
the house. People in my family told me that I was depressed. I didn't
argue with them but I refused to take anti-depression medication because
I had taken it when I was expecting my youngest and it flattened me out
to the point where I didn't care about anything.
My mother has a
hard time remembering things. My father has a good memory, that's one of
the things I got from him but when I think back on the past ten years
most of it is a hazy blur. Brain fog is one of the symptoms people with
Sjogren's report. It isn't that you can't remember things but the way
your mind processes information makes you likely to screw up even simple
tasks. I guess I would liken it to being half asleep and having to
focus on something important. You know you need to wake up but your body
isn't ready to give up sleep that it needs.
Back in November my
nurse practitioner told me that a gluten free lifestyle was going to be
mine from that point on. During March I was talking to my sister who
said that after giving up so many things I should be feeling better by
now. When your body goes through major changes it can take time to heal.
In the back of my mind I have always known that something was wrong. My
daughter is ten and a memory I saved from that time in my life is my
dad making me run even though my knees hurt.
A site that I
explored explained that family members of people diagnosed with auto
immune disorders may accuse them of being lazy. Those words rang true
because my husband gets frustrated by me starting big projects and being
unable to finish them. Fatigue is similar to being tired however your
body doesn't necessarily want or benefit from sleep. I'll be going along
folding laundry or making food and I can feel this wave of exhaustion
come over me.
The only solution is to lie down until the spell
passes. Initially I am so cold I will go to bed wearing multiple layers
of winter clothing. During my rest period my body will heat up and I'll
come to drenched in an unhealthy sweat. If I have enough energy I will
shower or bathe otherwise I'll drop whatever I was wearing by my bed and
find another place where I can lie down. The girls will come see me if
they need anything. For me fatigue means contemplating how much effort
it is going to take to get up and go to the bathroom.
Having an
excessively dry body is part of Sjogren's syndrome. Anything that should
be moist and lubricated suffers so my mouth, eyes, ears, nose and skin
are always dry. For as long as I can remember my left ear has hurt. No
one can find anything wrong with it and it wasn't until I read up on
Sjogren's syndrome that I realized having a malfunctioning ear can be
extremely painful and asymptomatic clinically.
While dry body
parts are uncomfortable the more alarming part of the syndrome is
reading about how it can affect organs and organ systems in your body. I
can only take in so much at a time so I'll read up on Sjogren's and
your kidneys or Sjogren's and your lungs before I get overwhelmed and
since I'm tired anyways I find myself needing to lie down and try to
start processing things.
What I want from my health care provider
is education and empathy. If this is what I have how do I manage and
cope with the symptoms? What are reasonable expectations and how can I
take care of myself so I can move past the pain and start actually
enjoying the life that I have. Taking on too many things at once has
been a part of my problem in the past. A girlfriend of mine gave me
great advice when she suggested focusing on one thing at a time.
Receiving
a diagnosis of Raynaud's, Sjogren's and Mixed Connective Tissue
Disorder was too much for my mind to assimilate at once. During my
appointment the nurse asked what my blood pressure was normally. The
rheumatologist came in, told me what my blood work had revealed, handed
me a handful of prescriptions and sent me down to radiology for a chest
x-ray. I was promised those results within 24 hours, I dropped off my
prescriptions to be filled on Tuesday. Friday afternoon a different
pharmacist than the one I had spoken with apologized that no one had
gotten back to me sooner and informed me that three out of the five
medications I had been prescribed had gluten or dye in them.
A
pharmacy employee at Walgreens told me that I should go in for allergy
testing so I could figure out exactly which dyes I am allergic to. The
pharmacist at Aurora asked me two or three times if I ever ate anything
with dye in it and seemed unable to accept that I live a dye free life. I
told the woman who works at Walgreens that I didn't understand why dye
needed to be in drugs, recently I read an interesting article about
cereal bars. Companies that stock a certain cereal bar in the US are
purchasing a different bar in Europe and the UK because over there you
have to prove that an ingredient is not harmful before you start putting
it in food.
It isn't fair to say that the rheumatologist I saw is
not good. Before I had any lab work done she said that she thought I
had mixed connective tissue disorder and I definitely had something
going on. She completely failed to educate me about the disease and she
left me with very little hope or understanding just a battery of
appointments to see more specialists and prescriptions that I won't be
able to take.
On the positive side because things could always be
worse I am good at research. I am also not going to accept a lower level
of care than I need. As a patient I am entitled to an explanation of
how my condition affects my life, my body and my energy levels. I
deserve communication when it is promised and I should be able to expect
some sort of prognosis for the future.
About 5% of patients
diagnosed with Sjogren's develop lymphoma. Monday I am going to have a
lung function test, I'm going in for an echocardiogram and I have an
appointment to see a hematologist at the Vince Lombardi Cancer Center.
At this point I don't know if I have the hematology referral because the
rheumatologist suspects I may have cancer or she just wants to
establish a baseline. After reading the symptoms of lymphoma I was
distressed because I have all but one of them however my sister said
that if I had cancer my labs would have been way off and that would have
been identified by now.
Attitude is one of the few things I can
control in life. I have a long list of questions that I want answered.
Do I have GI issues such as gluten intolerance and oral allergy syndrome
because my body is attacking my digestive system or do I have
rheumatoid issues because my body is unable to absorb nutrients
properly? Recently I started taking magnesium before I go to bed. I take
a high level Vitamin D supplement and a supplement designed to reduce
inflammation.
Without taking any prescription drugs the swelling
in my hands has visibly decreased. One of the drugs that landed me in
the ER last September was prednisone. I've had issues with it in the
past and after speaking with the pharmacist I've decided to invest the
money I would have spent on prescription drugs on good quality
supplements.
Having a protein shake twice a day has stabilized my
weight more or less. I found a very expensive high quality brand that
seems to work for me. Each serving is eight grams of protein so I get
about sixteen grams if I mix it with a cup of milk. Every two or three
hours I have enough food to get me through the next couple of hours so I
travel with quite an assortment of snacks and meals but if it's that or
pass out I am going to choose food.
I've decided to let go of the
chest x-ray that I don't believe I really needed. Having my chest
bombarded with radiation when nothing seems wrong doesn't make sense to
me but I am not a doctor so there may have been something about me that
she wanted to check and I'm okay with that. I have an appointment to see
an ophthalmologist and I'm kind of excited about that since dry eyes
are one of my most bothersome symptoms.
I had a very good
experience with the optometrist so I am optimistic about that
appointment. My tax return money is going to go to my orthodontist and
my podiatrist and if I have anything left over I'm going to decide what I
want to do with that money when it arrives. I have a bill for $973 from
the day someone at work called an ambulance for me. I don't think I
should have to pay that but I'm going to because calling 911 was the
right thing to do and I want to encourage that kind of behavior in the
hopes that the company I work for will start taking people's health more
seriously.
A coworker of mine said that a guy I rarely talk to
said that this was the first time he had ever seen an ambulance at work.
I was waiting for my coworker to say that the guy had something
negative to say and I was really surprised to hear that he had said it
was about time people started using their heads during an emergency.
Another
of my coworkers has been on me about getting my finances in order. This
is also on my growing list of things to do but all in good time. To
recap the diagnosis wasn't what I wanted to hear, naively I thought that
my GI doctor wanted to send me to rheumatology for the Raynaud's. I'm
impressed that he saw my hands and referred me to rheumatology based on
what color my fingernails were.
Western medicine is not all bad
nor is Eastern medicine always better than its counterparts. I am
infinitely better off than some people who come away with the same
diagnosis I have. I am frustrated that I specifically asked the
physicians I saw about my hands when I saw them becoming disfigured.
Doctors told me I had tendonitis when I complained about knee and elbow
pain, nothing they suggested helped so I stopped believing that they had
anything of value to offer me.
Some people have to go through a
Lupus diagnosis before they find out they have mixed connective tissue
disease so I am fortunate I didn't have to deal with that. None of us
knows when our last breath is going to be or what circumstances are
going to take that from us. All we can do is make the best of the time
we have given the bodies that we inhabit.
During bad times I wish
that the pain would go away for good. I wouldn't say I'm depressed
exactly but when it seems like everything hurts it is hard to find
motivation to move forward. There are other things I want to address but
I need to take a break from writing and thinking about questions I
don't have answers to. Enjoy what you can and try to let go of the
unimportant things in life.
A lot of life is what you make of it
and every day I read unbelievable stories about regular humans who
wouldn't give up which I guess is how I think of myself at times. Maybe
you would call it stubbornness but right now I'm pretty impressed with
myself for getting this far and not giving up which is what I want to do
quite a bit. I wish I had more answers and something hopeful to leave
you with but that wasn't in me today.
Until next time,
j
*Another old post but one I'm glad I found. Thankfully I'm in a much better place now.