For Better or For Worse
Sometimes, no matter how hard we try, things just don’t go
the way we plan. I planned on a happily
ever after with the man of my dreams, very little hiccups along the way, and as
little down-time from illness or sickness as possible. I should have known
better than to try and plan. I certainly didn’t plan on being sick as a
newlywed. I didn’t plan on spending 90% of my time in doctors’ offices, or
looking up new doctors, or researching treatments. On having a radical hysterectomy less than two
months after saying I do. November 30th,
2015 I arrived at Blessing and checked into surgery. I had everything removed but my left ovary, so
that was fun. Not. I had a pretty uneventful surgery for the most part, lost a
couple liters of blood that had to be replaced, but I have been told that’s
pretty standard with the surgery I had.
They also removed some endometriosis that I didn’t even know I had. So
there’s that.
At my 1 week follow-up everything looked good, and I seemed
to be healing well, which was a nice surprise, was given my history. I should have known right then and there that
things were going too easy, that something was bound to go wrong. Sunday, December 13th, 2015 I
started bleeding. Okay, I thought to
myself, this can be normal; spotting can be a normal occurrence with a
hysterectomy. At 6:30 that night, that’s
all it was, spotting, so I wasn’t too concerned. By 11pm that night the spotting had turned
into full on bleeding enough to fill a pad ever half hour. At this point it was more than concerning, at
least to Shawn and I. So, off to the ER we headed. Blood work was done of course, and not much
else, there was talk of doing an exam, but they decided it was best to not mess
with the cuff and we were sent home. So,
we headed to bed, with a full maternity pad on, clothes, and a towel folded
under me. When we then woke up in the
morning with me in a pool of blood, through everything I had put under me, the immediate
reaction was to head back to the hospital.
So off we went, again, for the 2nd time in less than 12
hours.
Once back at the hospital, the ER doc called my surgeon and
was told to send me straight to her office, so they discharged me, and sent me
the 4 or so blocks to Dr Mero’s office. She
immediately had me in an exam room, and less than an hour after heading to town
I was sent upstairs to emergency surgery.
I had a stitch that had either dissolved too quickly, or that I had
torn, that they couldn’t fix without surgery.
Meaning that they couldn’t stop the bleeding, and I was losing extremely
large amounts all at once. We were
scared to be honest, but knew that we were at least in good hands with Dr
Mero. My brother and one of his friends
were there with Shawn, so thankfully he wasn’t alone while I was out, which is
always one of my biggest concerns. Then the next day we were right back in the ER with a freaking infection, I think I was too tired to think at this point. All of the help from our family and friends
has been beyond appreciated, we can’t say thank you enough to everyone.
Sometimes though……I start wondering if we’ll ever catch a
break, if the constant barrage of health issues will ever stop. Just when we start thinking that we have
started to get a handle on things, that we might see the light at the end of
the tunnel, we get slapped with just one more unknown.
The newest diagnosis is autoimmune disease. Yep, another disease.
ANOTHER one. In case you’ve lost count, that’s 9 new ones
this year alone. NINE! The complete list of new diagnosis is; heart arrhythmia,
Chiari Malformation 8mm, POTS, Perineural cysts, thoracic Spondylosis without Myelopathy,
cervical Spondylosis without Myelopathy, Adjustment Disorder, Straightened
c-spine which is now starting to curve the wrong way, and autoimmune disease. I keep trying to remind myself that most of
these things are Chiari related, and I have faith and hope that after my brain
decompression I will feel so much relief.
There are truly times
that I just want to lay in bed, and try to pretend that none of it has happened
that nothing is going on, that nothing is wrong with me at all. After all, as my Great-Aunt Donna said, I look
healthy, but it’s like there is a war going on inside my body. Now, with the newest diagnosis, I know that my
body is quite literally attacking itself at every turn. No wonder I never feel good, no wonder I am
always tired. I seriously have over 2 pages of symptoms and to be honest I don’t
even list them all. Why would I? I feel like I’m whining. And, unfortunately there are plenty of people
that tell me that I am whenever I even mention what’s going on with me. Or I
get told to “try harder, exercise more, change your diet, go gluten free, dairy
free, soy free, etc”. Here is the thing
that I’ve learned with chronic illness though, there is NO trying harder. I try my hardest every single day of my life
to feel my best. To accomplish as much
as I possibly can. Unfortunately though,
some days I know that my best will be nothing more than getting myself from the
bed to the couch. Some days that involves my loving and wonderful husband
getting me into the shower and dressed and moved to the couch before he ever
leaves for work. Then this amazing man
comes home from a full day and takes care of not only me, but then the house as
well. He cooks our dinner, and does whatever chores I wasn’t able to complete
during the day, which unfortunately can be a little or a lot simply depending
on my day.
So, all of this would make most people I’m guessing want to
curl up in a ball and just not deal with anything, but I don’t feel like that’s
a real choice. Even though, truth be
told, I have days of wanting to do just that.
I have to fight like hell at times to smile, to talk to people, to
remember that at some point I might just feel better. The things that are able to keep me
going? My husband’s love, my beautiful nieces
smile, all of my nieces and nephews and the thought of seeing them grow up and
wanting to push my nerdiness upon them, so they don’t end up too cool like
their parents, tormenting my siblings and my best friends, and our
families. I might very well be fighting
something physically that will never have a cure, but I can’t help but
smile. I have such a full and wonderful
life, and I’ve never felt a love like I have with Shawn. I am so blessed every day that I get to wake
up see his smile, and every night as I get to lie in his arms and fall
asleep. I can’t ask for more than that,
because to me, that is true happiness.
There will probably always be days that I struggle; either
to get out of bed, to get dressed, to answer the phone when people call and try
and be friendly, and to smile when I want to cry, BUT I will get through
them. Maybe not each time, maybe not every
day, but I’ll take it day by day and minute by minute until I find my resolve
once again when I feel myself falter.
I’ve always posted as much as I can over the years to try
and help people with Fibromyalgia, and now, my hope is to post as much as I can
about Chiari Malformation and all of the connected diseases and syndromes. There are honestly too many to post, and I
can’t even begin to act like an expert on any of these things; but I need
answers still myself, and I can’t find enough in one place. So, like when I was diagnosed with Fibro, I’m
going to do my best to help others the best that I can with as much information
as I can find.
I’ll try and post spreadsheets with symptoms, misdiagnosis,
connected diseases, tests my own personal films and results etc. There is a lot of misinformation floating
around as well, and I will do my best to not be another site of incorrect
information, so if you see something that doesn’t look or sound right, please
feel free to call me out on it. You see, I’m learning all I can about this
disease, and in the process I intend to try and help as many people as I can
along the way. My best friend, really my
sister, Sarah, tells me all the time that the reason that all of this is happening
to me is so I can help others understand maybe what they are going through with
my words. So, I’m going to do my best to
do just that and hopefully, it’ll help me in the process.
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