The worst health scare, bar none, is my, and my
two daughter’s (age 2 and 4) current battle with Chronic and Congenital Lyme
disease. I have had Lyme disease for
most of my life but didn't know what was wrong with me; my mom brought me to
all kinds of doctors while I was growing up and none of them had any idea either. I believe I contracted Lyme at the age of 4,
after having eight ticks imbedded in my back, and again at the age of ten and
again at 12. I developed strange and severe
symptoms after each incident but we had no idea Lyme disease even existed. My main symptoms in childhood were; a
non-stop headache (at no time do I not have a low-grade headache), constant
migraines, ear infections, allergies, severe eczema, anxiety, stomach problems,
fatigue, and joint pain. The severity
and frequency of my migraines has cost me a lot of jobs in my life. After a botched C-section with my 1st
daughter (I had no anesthetic) I got really, really sick. I got very depressed and anxious to the point
of mania. I was so fatigued that I couldn't stand up or hold
my newborn baby for long periods of time: It felt like I was walking through
neck high mud wherever I went, even brushing my teeth was a monumental task
that would take me hours to accomplish.
I was initially diagnosed with Post Partum Depression and PTSD (from the
birth trauma), and spent the last four year seeing dozens and dozens of doctors
(literally), doing dozens of therapies, taking dozens of medications with
horrible side effects, all to help me get well and nothing has worked to date. The diagnoses that I have accumulated, since
the birth of my 1st child, are: Post Partum Depression/Anxiety/OCD, PTSD,
Anxiety, Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Major
Depression, Bi-Polar...and I am pretty sure my next diagnosis will be MS. I found out that I had Lyme disease and two co-infections,
Bartonella and Babesia, and that I had passed them to my beautiful children in
utero. We all found out we had Lyme in July
of 2012. My four year old daughter has
been very sick since she was born. She
has had so much wrong with her that it would take a book to describe it
all. Her major symptoms include;
extensive food allergies (allergic to over 40 foods that we know of), severe eczema,
gross motor delay, neurological glitches like tics and a recent seizure, anxiety,
Sensory Processing Disorder, Hypotonia, insomnia, rages that include severe
emotional meltdowns (multiple times a day) that go beyond normal toddler tantrums,
constant stomach aches, chronic constipation, joint pain and leg spasms,
headaches, chronic ear infections, eye problems, sinus issues, sleep apnea, and
extreme nightmares - Her Neurologist was
convinced at one point that she was going to show mild Cerebral Palsy on her
MRI but the MRI came back clean and he was flabbergasted! There are probably more symptoms that I am
forgetting to include, but I have no short term memory from my Lyme illness so
my brain function is really poor. My
sweet four year old has had to endure more pain and suffering in her short life
than a lot of people experience in a lifetime.
My wily two year old seemed to be the healthiest of all of us
initially. She is the only one of the
three that has been able to get a CDC positive for Lyme disease. Since she was born her symptoms have been;
rages, anxiety, OCD, Sensory Processing disorder, nightmares, neurological
gross motor glitches that include falling episodes, allergies, bouts of
extremely high fevers with no other symptoms and then extremely low temperatures out of the
blue, headaches and joint pain. I don’t
know if there is anything more horrible than your one year old holding their
head or knee and screaming in pain. As a
mother I have had to watch my children suffer horribly and there is nothing I
can do to help them. You see we can’t
get a doctor to help us because they all say that Chronic and Congenital Lyme
disease does not exist. We are forced to
see a Lyme Literate practitioner in another state because she is the only
person that will help us. All of our
medical expenses are pretty much out of pocket, and we pay for health insurance
yet are unable to use it for any treatment related to our Lyme disease. We have spent over 30 thousand dollars since
I got really ill four years ago. Every
year we completely max out our Out Of Pocket expenses, and this is on top of
paying for all of our Lyme treatment out of pocket. Since I lost my job last year because I was
too sick to work, I am now a stay at home mom and trying to take care of two
sick girls while I am almost bed-bound for half of every month. I am in constant and excruciating pain, and
my cognitive abilities are so compromised by my illness that I don’t drive much
anymore, and rarely leave the house. We
are very lucky in that I have my parents close by to help, my husband and I, take
care of our girls. I have a good friend
that also comes over to babysit me when I am so ill that I am literally
paralyzed on my bed and unable to eat, drink or use the bathroom for several
days in a row. We don’t go to the ER
anymore, when this happens, and I will explain why later. My husband has been an incredible support
system through all of this. He is single
handedly keeping our ship from sinking.
Because I am so disabled, my husband will get up in the morning before
work and get the girls fed, then will come home at lunch and feed them before
getting them ready for their nap, and when he gets home he will make dinner for
all of us and get our girls ready for bed.
Because of the massive amount of stress and responsibility on his shoulders
he is also starting to crumble and it is taking a huge toll on him, mentally
and physically. Lyme disease is one of
the only diseases that also comes with incredible political controversy. In fact, the controversy over this disease is
so wide-spread that most people with this illness end up losing a lot of their
family and friends over it. It is one of
the most socially isolating and lonely illnesses I have encountered, because it
is so hidden, and because of the politics and controversy behind it. The controversy is so prevalent that it
affects all avenues of your medical/health care once you are diagnosed with
this illness. For Example, the first
time I needed to go to the Emergency Room for heart arrhythmia (caused by
complications of my Lyme disease), my husband and I were literally berated and screamed
at by my ER physician. I wish that this
incident was isolated but it isn’t. If you
ask any person with Lyme disease about their experiences with how they have
been treated while seeking any and all medical care they will tell you this
same story, of abuse and disrespect, over and over again. Well I have gone on long enough but I BEG of
you to do a story about Lyme Disease, and on those of us (our children
especially) that are suffering from this horribly debilitating disease. Please help us have a voice so that at least
our children can get the medical help they need to live and experience
life. Thank you for listening.
Here is the link if you want to post your story too. Go Lymies!
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