In an ideal world, I wouldn’t have chosen to have one
incurable chronic illness, let alone two. I mean who in the hell would choose to feel
pain EVERY DAY ALL DAY (no exaggeration)?!? Um, that’s a rhetorical question,
so I really don’t need to write an answer to that question. My reality is… I have Scleroderma &
Polymyositis. I felt like I was giving an introduction at an AA meeting with my
previous declaration, LMAO. I know I
haven’t mentioned the later disease much (in my previous posts), it isn’t
because its effects are ‘mild;’ actually it’s the total antithesis of ‘mild.’ Both diseases cause extreme pain and
inflammation in the joints and muscles. Moreover, they both compromise the
immune system and both diseases are incurable.
Polymyositis generally effects the areas specific to the trunk of the
body, i.e. the neck, arms, chest (including the lungs and heart) all the way
through the hips and legs. Polymyositis
is muscle inflammation coupled with weakening of the muscles and lots of pain. It causes neck weakening and many people have
difficulty with swallowing and lifting their head; and it even effects walking.
Sometimes, I’ll have what I call the ‘cowboy strut,’ and I waddle like I’ve
been riding horses across the damn desert plains for hours or something, LOL…
[DISCLAIMER: I’m NOT making light of this awful disease. I’m strictly talking
about MY experience with these diseases; and as I mentioned in my previous
post, I utilize humor to cope.] In addition to difficulty walking, there’s
great struggle with climbing stairs; as well as, trying to get up from low
seated positions. It’s hard to do the simplest of tasks. For example, it’s a
chore to try to comb/brush and style your hair or grabbing objects, or bending
down to pick something up. I am so
thankful my mother bought me two reachers/extenders one for the kitchen; and
the other, I transport from room to room.
When you have Polymyositis you’re tracked by a Rheumatologist, which
works in my favor since I already see this specialty for my Scleroderma. Both diseases are able to be managed by
medication i.e. steroids (or other medications); which can be administered
orally or intravenously. The goal is to
try to put Polymyositis into remission.
Some very severe cases of Polymyositis causes people to use wheelchairs
and walkers because they are unable to walk/get around without assistance.
If I were to place my “extreme pain days” on a rating chart
system, I would plot my intense level of pain at a level 15 or 20. However, on a ‘normal pain day,’ (which is
every damn day) my pain levels are anywhere from minimum 6 to 10. Any pain is too much; but on “extreme pain
days;” it feels as if my world is coming to an end. It’s unbearable.
Usually, I have to take a pain relief
medication every 6 hours to help me cope. More than likely, on “extreme pain
days” a slight fever will attach itself to my pain. In order to cope, my body
will go into ‘sleep mode.’ “Sleep mode”
is the equivalent of blacking out x hibernation type sleep = “Rip Van Wrinkle
Territory” a.k.a. deep, hard and long periods of rest. I only wake up when the pain has dissipated
to ‘normal’ pain levels. The only things
that sort of minimally help are heating pads and hot showers to help penetrate
and sooth the inflamed areas. Sometimes. The pain is localized to specific
areas like my shoulders, or my posterior and hips area. On these days, I often have to utilize a cane
to help aid me with walking around my apartment. I can’t determine which disease is causing
what pain; since there are overlapping symptoms. It would be most appropriate
to say, I have MCTD (Mixed Connective Tissue Disease). Many individuals with
Scleroderma have another accompanying autoimmune disease, like Lupus,
Fibromyalgia or Sarcoidosis, just to name a few). It’s horrible when you really stop to think
about the fact that a person’s body can literally betray them by attacking
itself.
It’s my mission in this life to advocate for raising
awareness for chronic illnesses and diseases overall. By spreading awareness, we are giving people
information & educating them on a specific cause. If you personally don’t have a chronic
illness; I’m sure you may have a friend or loved one living with an illness. The more people who become aware of an
organization/cause, may go on to tell a friend or five and they all may donate
to a cause. A portion of charitable donations
goes directly to research to help find cures.
I don’t want another person to ever have to experience the pain and
complications that I do each and every day of my life. I know I rep extra hard (a.k.a. advocate) for
Scleroderma by selling raffle tickets, writing my local and state Senators, as
well as; promoting awareness on Twitter, Instagram, LinkedIn, and Google+. Not to mention, the creation of this very
blog to help bring light to the fact that there are so many people who have
chronic illnesses and we “push past pain” to lead very full lives. It’s my hope that you help me and others
suffering, to have their voices heard and validated. If you can spare a bit of
time or money, there are charities all over that can use a helping hand and a
smiling face. Please turn the idea of ‘pain’ into a “passion project.” It’s my absolute hope and prayer that there
will be a cure for Scleroderma, Lupus, Fibromyalgia, Sarcoidosis, and
Polymyositis; as well as, any disease that is currently categorized as ‘incurable.’
Thank you for reading and I’ll see you in the next
post.
Smooches & Hugs!
Kimberly
