Since June I have been battling what was thought to be
cellulitis. I have spent over a thousand
dollars in copays, including a night at the hospital and so many antibiotics I’ve
lost count of names and durations they’ve been taken.
Long before June I’ve been battling with extreme
exhaustion. Stress, that’s what everyone
says it is, just stress – eliminate stress from your life! They stumble when you reply “how?” Can’t remove the stresses (parents’ health,
my health, work stress) unless I plan on abandoning everyone and
everything. Plus anyone who knows me is
aware that would just compound everything because it would add guilt to the regimen.
Last week my leg started to flare up again. Four rounds of antibiotics, each time it
would go away then show up about 10 days later.
It started Tuesday night and I went in the bathroom to hide and
cry. I try my best to be strong, but I’d
had enough of this.
By Wednesday morning my leg looked like it had been
scalded. Bright, fiery red. It passed pink and went straight to “holy
shit” status. I put on yet another pair
of compression socks, headed to work, then called to see the doctor AGAIN. No problem leaving work because untreated
cellulitis can kill you. They want me
alive…
Saw my doctor, more antibiotics, some tears, and that was
that. I wasted time looking for a new
car (whole other story, but one I will share – might be titled “Why yes, I am
blunt (aka the bitch)) and then went to see the rheumatologist for the results
of the eight vials of blood that was collected on my previous visit.
He has a male nurse, which is awesome, except for the part
of being weighed. Some how it’s less
intense when it’s a female weighing me, which seems stupid because this wasn’t
the start of a date. We went through the
vitals and I kindly explained that if I was told I was just fine I was going to
have a complete mental breakdown in the office, but would try to restrict it to
being a quiet meltdown.
The doctor came in, he started talking about where we were
and where he wanted to go when I mentioned the cellulitis. I’d mentioned it previously, but it was under
control so there were no visuals. He
asked to see what I was talking about and I showed him my leg, the patches that
I’d been told were eczema, and he began poking on my leg, then comparing it to
the other one, checking different things.
“You don’t have cellulitis, you have panniculitis!”
There was a moment of silence at this news. For him it was apparently revolutionary. As for me I was thinking “ok, still an itus!” Then he became very animated, showed me images
online and my first words were “oh my god, those are my legs!”
He explained to me that this changed everything. I went from having lupus markers to possibly
not having them. He gave me the full
name, told me a steroid would get the inflammation down, to read up on things,
and he promised me I would feel better in a week. No eczema either ... I just started tearing up. He told me he wanted me back in a few weeks,
but that lupus was now taken out of the picture. He has a few things he wants to check when the
rest of the symptoms subside, but he was pretty sure they were penniculitis
related. He also said get rid of the
compression socks, my body considers them trauma (so does my mind!) He patted
me on the shoulder and reminded me that he said he would help me feel
better. I thanked him profusely and made
my way out of the building.
I got to my car and googled “idiopathic nodular panniculits.”
“Signs
& Symptoms
Idiopathic nodular panniculitis
usually begins gradually. Abnormal bumps or masses (nodules) appear in the
fatty layer under the skin (subcutaneous fat) of the legs, thighs, and
buttocks. In some cases, the arms, abdomen, and/or face may be involved. These
nodules are usually 1-2 centimeters wide and may be either painful and tender
or painless. In some cases, the affected area may become red (erythema) and
waste away (atrophic), eventually healing and leaving a slight depression.
Another common finding associated
with idiopathic nodular panniculitis is recurrent episodes of fever. Additional
symptoms include a general feeling of ill health (malaise), fatigue, muscle
pain (myalgia), joint pain (arthralgia), and/or abdominal pain. In some cases,
weight loss may occur and nausea may be present.”
Fever – check
General feeling of ill health –
check
Fatigue – check check check
Muscle pain – check
Joint pain – you know it
Nausea – check and glad to know what
THAT was about
Reading this and realizing how far
beyond an angry red leg this went was mind blowing. I sat there, stunned, and slowly started
sobbing. Large, giant, gut wrenching
sobs. I wasn’t upset, but thrilled. I had an answer. I had a rare disease, but it came with an
answer and treatment.
It’s one week later and as promised
I feel better. My left leg is bordering
on looking normal. Even the swelling has
subsided, leaving my ankle quite thin and my shoes needing to be laced tighter. All the dry patches of my skin have healed, leaving my limbs looking quiet ordinary.
Monday the brain fog lifted. I felt like my head was being unwrapped from
a dozen layers of cotton batting. As the
day went on I kept making remarks about how I wasn’t tired. I felt alive. I felt …. Able.
It’s now Thursday and I can say I’m
a little tired. Brain is functioning
much better. Energy is up. I have actually gone to the gym twice on my
own and killed it. Last night I noticed
the leg press didn’t hurt me as it pressed in my skin. The pressure always made me wince, to the
point that I couldn’t always lift as much as I wanted because of the pain. Last night there was none.
I do have regrets when I realize how
long I have probably been dealing with the effects of this disease. It easily falls into the years long category,
but a huge part of that was due to attributing everything to my car crash and
stress. It never occurred to me that it
would go beyond that!
Never occurred to me that I could
ever feel normal again either. I’d
started to give up and accept that this is what happens as my body ages.
Now I feel like there is so much
more possible for me. I have a lot of uncharted waters to check out and I plan to do so.
