Well I
held off as long as I could. No really I did. Sure there were a handful of
tweets but mostly I was trying to not get swept up in the emotions that lie at
the corner of chronic and invisible illnesses. I was trying to prevent becoming
my own migraine trigger which is a pain the ass. But now I am over it. The more
I read online and hear from other people who do not have a clue what they are
talking about, let alone in jest has made my blood boil. So I write this now
for me as a way to get it off my chest and hopefully educate those who want to
do better.
I really
try to avoid these feelings at all costs. To avoid upsetting myself I try to
breathe and let it go but enough is enough. Once I crack the vault open and
allow the rage to flow I fear it may never retreat back to its hiding place.
Living in that angry, hurt, mindset is not a place I can function in for long.
I have to get myself back on track which can take a minute. I have to feel it
to release it.
This is
why I do not like writing about my illness in blogs that do not fall into that
topic but it affects me and my life in more than one way so there is no
avoiding it. I am working extra hard to remind myself of this when I come
across people like Lisa Rinna on the Real Housewives of Beverly Hills (RHOBH).
I have
been watching that city version of the show since the first episode aired
because I liked Camille Grammar who is not currently a series regular. I watch
it for the distraction of a good Bravo show when you are doing things that need
your attention. These aren’t a bunch of rocket scientists talking so I don’t
need to see every single second. It’s really for background noise and to see
what new animal Lisa Vanderpump has added to her menagerie. Meanwhile in my
next life I want to come back as one of her miniature ponies.
But this
season opened a whole new can of worms. It sucked all the fun out of me and
apparently the women they are filming. They seem to forget that their life of
privilege can all go away with the blink of an eye. Health isn’t something that
is normally controlled by money alone so I hope for their sake they grow on up
and count their lucky stars. They don’t have the stamina in their spirit to be
strong enough to be chronically ill. As my friend Barbara would say, “God
Willing”, they will never have to find out.
This all
began at the end of last season when Yolanda Hadid, formerly Foster, as in
married to David Foster musical genius, started to share her medical journey
with the world. Prior to this she was the gorgeous Dutch woman, former
supermodel; with two beautiful daughters who are now pursuing that vocation
very successfully (she also has a son). These children were from her previous
marriage to Mohammed Hadid who we have seen on the RHOBH as well.
Yolanda
suffers from Lyme Disease and I think the name is half of the problem. It
doesn’t sound like what it is: an infection in your brain leading to taking
enormous amounts of antibiotics to treat. This is of course worsened if it has
gone undiagnosed or misdiagnosed for some years and have a body that can’t
handle the treatment for long period of time. It does more than rob you of
feeling good; it robs you of feeling human. You aren’t able to move really or
take care of yourself. Speaking is perhaps the hardest part of this disease.
Since it is your brain that is affected so too is your train of thought,
memory, and ability to string words together. As a chronic migraine sufferer I
know the feeling and it sucks. I also love someone who suffers from this
disease, which prevents us from regularly contact. Trust me it is no picnic.
I am not
only a fellow sufferer of some of the same symptoms but worse another victim of
a so-called invisible illnesses. It certainly doesn’t feel like its invisible
but it must be because short of gushing blood out of my broken brain no one
seems to have a clue how bad I am feeling even on a “good” day or even after I
say “I am in agony”. It just crickets until I break the silence. That simple
fact is enough to bring up some rage. From there is just builds.
Despite
the handful of people in my life that have a real clue how I am doing still
will never get it. They never had this illness so to a large extent it is not
their fault. But bless their hearts they think there are good and bad days. Not
so. Everyday has some sort of challenge and days go from bad to someone please
put a bullet in my head to end it all. This usually happens at four a.m. when I
have been up for over a day and have not managed to break the pain cycle. That
is also the time I get to watch myself extra close some how to make sure I am
not suffering a stroke. I mean between the very large FAKE spiders I see all
around me and the ability not to be touched, not even on my hair, blinding pain,
and exhaustion, this is what I have to worry about. Add in the fact that I am
the only one awake in my house and the only one who has seen every episode of
“The New Adventures of Old Christine” and you are starting to get to the tip of
the iceberg. I will stop there because I don’t think you can handle the rest. I
certainly do not feel like reliving it at this moment in time. I know those
types of days and nights remains in my future- another crushing blow for those
of us with chronic illnesses and chronic pain. The truly ironic part is that
right when we are at our weakest, sickest, dilapidated version, we are actually
the strongest. There are people who for sure suffer worse things but there are
quite a many more who could handle living a day in our shoes, let alone a
really hard day. I try to remember that around five a.m. when I am begging
heaven to grant me some mercy.
Most of
the time I am able to speak calmly and intelligently about my illness trying to
educate those who ask how I am doing and really mean it. But if I am three
words in and I have lost your attention I don’t continue on. My time and
breathe are extra precious. But if you really want to know I will tell you
absolutely everything about my journey. It is mine but I will share to inform,
help, and respective the many millions of fellow migraine patients out there.
Like my neurologist would say; “I have a neurological disorder and the migraine
is the symptom.” Still I feel like if I had diabetes no one rational would say
“don’t take insulin, just wish your disease away.” The contest for the
stupidest suggestions is wide open. The winner changes daily. If I had any
extra strength I would have become green, tear off my shirt like the Hulk, and
pound them into the ground within an inch of their life. Instead I walk away
and visualize what that would feel like.
Yolanda
is a person of privilege so she was able to travel the world for treatments
desperate to regain her brain and life back. For this she gets ridiculed for
posting on Instagram pictures of her out and about on a good day and then on
another day a photo of her in bed. Hell it could even be later the same day.
This I know all too well. This is the worst part. My mother use to tell me “if
I didn’t have something nice to say to refrain from saying anything at all”,
clearly not a lesson I learn. But I will say this “if you do not suffer of
what you speak, shut the fuck up”!!!! You can quote me on that. I think I will
print that on some t-shirts to pass out with that phrase. Minding your business
when all you have to do is get Botox for recreational use and worry how over
pumped your lips are is what is filling up your days. Try getting forty-one
shots in your head, neck, and shoulders every three months just so that WHEN
you get a migraine your pain pills will actually stop it in its tracks. That is
of course aside from the twenty or so preventive pills I take every morning.
And I am a lucky one. There are so many other chronic migraine patients that
haven’t found what works for them yet. To them I say hold on, I pray help is
coming soon, you know if we ever get any money from the government to pursue
research and drugs that are actually for migraines, as none currently exists.
Here is a
tidbit of what prompted this:
“The challenge with chronic head
pain is that it is invisible. If
you tell people you really hurt, then you are complaining. We are disbelieved simply because we
are women, and dismissed as having a “women’s disease.” If we don’t tell people about our pain,
then we are responsible for them not understanding we have a debilitating
condition. The physical hurts are unyielding. The pain. The
numbness. The weakness. The dizziness. The nausea. Yet the psychic hurts can
feel much worse. We are faking
it. We should take Tylenol and
then be all better. We must be
doing something wrong. “I used to
have that and I did x, y and z, and I’m all better.” It’s insulting and infuriating."
even
worse: He is happy on-camera, all
For the
full story click the links below. There will also find my previous migraine
related blogs to explain more about my condition and my story.
I guess I
did have a few things to get off my chest after all. I wish I could say it to
David Foster’s face and those that agree with him. Sadly he will never really
get it and even as mad as I am now I wouldn’t wish a chronic illness on him. I
just wish he knew what a gift compassion would be for his ex-wife, even after
they separated. It is not like anyone hopes this happens to them and it is
certainly not their fault when the life you plan gets changed on you. That’s
life. But unfortunately not everyone has to live in the real world. Instead he
was just talking out of his ass proving what an ugly man he is on the inside.
As my
dear Phaedra Parks (from the Real Housewives of Atlanta) would say; “Fix It
Jesus”!!
I will
add to that; God Speed.
For More
Information:
For My Migraine Related Blogs:
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