They say time flies when you’re
having fun … well let me tell you, time has been like a turtle crawling through
molasses for me. There’s been a lot of
change – with my medications, my symptoms, my diagnoses (see the updated What’s Wrong page), and my
medications again. Honestly, the past
couple of weeks have been the worst it’s ever been … but Silver Lining Girl
realizes that may have been necessary to figure things out – and (hopefully)
make them better.
For the past 4 years, I’ve cycled
through a dozen diagnoses, countless tests, and medication changes each step of
the way (all this after being dismissed and disregarded by doctors for 4 years
before that because there were no “visible” symptoms). Doctors initially said I had "something
autoimmune" (meaning that my immune system is attacking healthy cells in my body, rather than protecting me from infection) affecting my joints, my skin, and my body as a whole (systemic symptoms like debilitating
fatigue, fever/chills, etc.), but they couldn't pin down which disease(s) caused my symptoms.
Prednisone has been the only thing to keep the swelling in check, but it’s
brought with it a number of side effects: 100lb weight gain, weakened bones and
teeth, Cushing Syndrome, gastritis, blurred vision, and more … and still
has not been enough to take away the pain.
For these reasons, we’d tried to get off the Prednisone a bunch of times
… but each time we tried, my feet and ankles swelled up within just a couple
of days, forcing me to go back on the Prednisone.
A few months ago, I decided that
I didn’t care about the swelling – it was better than some of the long term
problems that Prednisone was giving me.
It wasn’t just vanity – the weight that it caused me to gain was making everything
else worse, and was more likely to break my weakened bones. I guess part of it was vanity: I didn’t want
to become a fat, blind, toothless, bearded lady who breaks bones every time she moves. Either way, I needed to get off the Prednisone,
and my doctors agreed.
We spent several months “weaning
off” the Prednisone, and – as expected – my feet and ankles started swelling more. By the time I was completely off it, my feet
had gotten so big they couldn’t fit into any of my shoes. I could barely walk – I started using a cane
for the first time (which I had to accessorize with hippie scarves like a Steven Tyler microphone), and had difficulty even with that. I went back to my rheumatologist (who had
never seen me this bad), and she immediately added some new medications to
help, including steroid injections in both my ankles (which wouldn’t have the
same side effects as the oral Prednisone).
She ordered a bunch of lab tests, and finally got some answers – or at
least some direction. That led to more
tests, more specialists, more questions … and ultimately, to more answers.Without the Prednisone and before the new meds could take effect, every one of my joints became unbearably swollen, stiff, and painful. I sat on the couch, crying, texting my mom to come over because I couldn’t get up off the couch by myself. After that, she started coming over every day to take care of me while hubby was at work. I couldn’t move an inch without screaming in pain. My hands and feet got it the worst – not only joints so swollen they couldn’t move, but skin so sensitive that any touch burned. My wrists, elbows, shoulders, and hips were not much better … and my knees – oh god, those knees – every time I tried to stand or sit (even with the help of hubby, mom, or my cane), I felt like they were going to break from the pressure.
In addition to the long term side
effects, it seems the Prednisone was masking the real problem, too. Without it, I’ve had the first positive test
results in … ever! Up until now, the
problem has been that my symptoms look like X or Y or Z disease, but the blood
work is negative. We’ve been treating
for various diseases that could be sero-negative
(meaning that you have the disease without the positive blood test), but never
quite fitting into the diagnostic criteria, and never getting the results we
were hoping for. Until now.
Without the Prednisone mask, my
blood tests were suggestive of Sarcoidosis. Suggestive, but not enough to say for sure,
as diagnosis requires multiple positives, including radiography and pathology. Next, we did a chest x-ray, which also suggested sarcoidosis affecting my lungs. Finally, a skin biopsy: the pathologist said
on its own, she would be on the fence (could be sarcoidosis, could be something
else), but with all the other positives, this confirms the diagnosis. Next week, I’ve got a nuclear medicine scan
ordered by my GI – something that is often used to “localize sarcoidosis” – so it
seems some of my GI problems may be a result of sarcoidosis as well … and maybe
we’ll have another positive test result to prove it.
For most people, getting positive
test results from the doctor is the worst thing they can imagine. It confirms there’s something wrong, and life
will never be the same again. For me,
though, I’m already past that point. I’ve
known something was wrong for nearly a decade, and it’s only gotten worse over
that time. But without a definitive
diagnosis, I’ve had to deal with doubt, denial, and dismissal – from doctors,
employers, and people who were supposed to care. My life has already changed, and I know
things will never be the way they used to be – I’ll never be the way I used to be.
But with positive test results – with an actual diagnosis – I have
confirmation. I have validation – from all
the people who said (or thought) that it was all in my head, that I was
overreacting, that I just wanted attention.
No. I was right. I knew something was really wrong. I was really suffering. I am really sick. I’m not crazy, I’m not making this up, and it’s
not my fault. I have Sarcoidosis (and
Fibromyalgia, and a handful of other illnesses).
Don’t get me wrong – I am in no
way glad to have Sarcoidosis. It’s an inflammatory disease that is already
impacting my joints, my skin, my lungs, and possibly my intestines. As the immune system causes "granulomas" to form in almost any organ in the body, it can affect that organ's ability to function. This inflammation can cause overall body (systemic) symptoms as well.
It is painful, debilitating, and to be honest, really scary. I wouldn’t wish this on my worst enemy (not that I really have any enemies). But I am glad to have an answer. And I hope that
answer means that new treatments will work better, because we know what we’re
dealing with now. Still, I know that it
will never be gone. I can hope for remission (a period of low
disease activity), but I will always have this terrible disease, and it will always
threaten to come back with a vengeance for any reason … or for no reason at
all.
Since we’ve started the new
treatments, my swelling has gone down, and I’m able to move a little easier
now. I can actually get up from a chair
with only the help of my cane, without another person to lift me up. I’m still in unbearable pain, and still need
help to do most things. I don’t know how
much more improvement I’ll get from the medication, I don’t know how long that
will last, and I don’t know which other organs are already affected (or will
be). I can only hope that things will
get better, that I’ll regain my independence, that I’ll get back to some
semblance of a “normal” life.
So that’s where I’m at now: I’m
in pain, but I have answers … and I’m trying really hard to hold on to that
hope. It’s hard, because so many times
before I’ve heard the doctors say they think they know, and so many times I’ve
hoped that this new medication would be the one to make things better, and so
many times we’ve been wrong. But there’s
still a little spark of hope. Things are
different now. This time, it’s not just
an idea – we know what we’re dealing
with, and that’s got to make a difference.
I have to hope that more specific, directed, targeted treatment will
make a difference. I have to hope it
will help. I just have to hope. Because it’s what I do, no matter how bad
things get. I still hope.
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