by
Michelle N. Johnson
So, today is the last day of Endometrosis Awareness Month. I
hope you guys have have been educated enlightened and empowered by all
the posts, info, and dialogue I've been sharing with you all month. Hugs
and Thank Yous to EVERYBODY who pitched in and helped me to make this
happen! When I started this, I was asked to complete a challenge by
answering a series of questions about my personal experience to help
others learn more about what it is actually like to live w/ this
disease. I decided to share my challenge with you as my last 'official'
post for awareness month. I hope you'll take a few moments to read this
and continue to help me Fight Fiercely, not just this day but EVERY DAY
until we finally put an END to Endo!! Peace & Love Y'all!!!
~MNJ
Endometriosis Awareness - 31 Day Challenge
Day 1. For me, living with Endometriosis is: EXTREMELY UNPREDICTABLE
Day 2. I was diagnosed with Endometriosis in the year: 2008
Day 3. But I had symptoms since: Looking back, probably around 2000
Day
4. The biggest adjustment I’ve had to make is: sacrificing a certain
quality of life and learning how to function optimally while being in
some sort of semi - medicated state a great majority of the time.
Day
5. Most people assume: #1 It must not be ‘that bad’ because I don’t
‘look sick’ and #2 that because I had surgery, ‘everything is okay
now…right?’
Day 6. These are the treatments I have tried
so far: surgery, continuous birth control pills (multiple/various
types), Hormone/’Pain Management’ Therapies (Lupron, Danazol, Neurontin,
Elavil, Norco, Vocodin, Ibuporphen 800 up to 4x’s a day)
Day
7. The hardest part about mornings are: getting out of bed, getting out
of bed on time, getting out of bed with a clear focused mind and train
of thought.
Day 8. My Favorite medical TV show is: House
Day 9. A gadget I couldn’t live without is: my mp3 player
Day
10. The hardest part about nights is: GETTING ENOUGH SLEEP/REST,
Getting a truly restful, peaceful, undisturbed sleep, Insomnia, Being
able to get sleep and stay asleep when the pain is bad, Having the meds
disrupt your sleep natural cycle, having only a short period of time to
be functional and/or get things done before your pain meds kick in and
zombie you out!!!{usus60-90 mins}
Day 11. Each day I take
4-7 pills & vitamins: I take one bc pill, 2 Elavil, up to 4 IB 800s
and up to 3 Norco/Vicodin depending on the pain/symptoms, and 1
multivitamin or Prenatal ( how ‘bout THAT for irony – Endo is on of the
top three causes of infertility and yet Pre-Natal vitamins are often
given to help give needed vitamins/minerals to the reproductive system)
Day
12. Regarding alternative treatments I use: massage therapy self are
techniques (obviously, sine I’m a Massage Therapist), Pelvic Floor
Physical Therapy, and aromatherapy w/ my hot
packs/compresses/baths/showers and massage PRAYER
Day 13.
If I had to choose between invisible illness or visible I would choose:
NOT TO BE SICK at all! W/an invisible illness you often get ridiculed
b/c you don’t ‘look sick’, so its hard for people to understand and /or
empathize. With a visible illness, you may get more understanding, but
still get ridiculed and/or shunned b/c people CAN see your symptoms.
It’s a lose-lose
Day 14. Regarding working and career: It has been
SEVERELY affected by having Endo. As a business
owner, I not only am the lead therapist, but I’m the president,
administrator, the HR person, the bookkeeper, etc. There are days when I
can’t meet deadlines or meetings or when I have to postpone projects,
or simply can’t go to work. That bothers me b/c I tend to be a
perfectionist and I pride myself on giving my clients and business
partners the ultimate in excellence of service. I hate it when I can’t
give 100% of myself to my clients, my circle, or myself. When I’m in
crisis mode, I often struggle w/ guilt of being ‘idle’ or ‘lazy’ b/c
even when I’m lying there doubled over in pain crying my eyes out, or
so doped up I literally can’t see straight – all I can think about is
‘what needs to be done’, ‘what I need to be doing’, all the
projects/meetings/networking oops that are falling by the wayside. When
I’m able to I push through, I do, and when I can’t I feel absolutely
wretched about it!!!!
Day 15. People would be surprised to
know: The seriousness of the degree and the severity of my condition.
Because it can’t be seen outwardly, and b/c (until now), I haven’t been
vocal about it, the few people that (did) now assume that because I’ve had
surgery for it – that everything is ‘ok now’. I often don’t let it show
on the outside all that’s going on inside, I’ve become the MASTER of
the ‘smile and nod.’
Day 16. The hardest thing to accept
about my new reality has been: My new reality! Having to RE-adjust
nearly EVERYTHING about the way I live.
Day 17. Something
I never thought I could do with my illness that I did was: ‘Come out’
publicly and allow myself to be a spokes-person AND a FACE for this
disease so that hopefully my trials with this can lead to someone else’s
triumph
Day 18. I feel that Endometriosis
Awareness is: EXTREMELY IMPORTANT! Before being diagnosed I had never
even heard of this disease. After living with it for four years and
STILL learning new things about it, I became really pressed, and
inspired to educate enlighten and empower other women, and their
families and loved ones to truly learn how to be survivors and not just
sufferers of this disease
Day 19. Something I really miss doing since I was diagnosed is: TMI Alert: sleeping with no panties on!!!
Day
20. It was really hard to have to give up: #1 My left ovary and
fallopian tube in order to preserve the rest of me so that I can still
be able to have children if/when I’m ready, #2 that super sexy size 14
that I used to be and lost b/c of all the drugs and hormones and their
side effects wreaking having on my body! #3 sexy/cute/'girlie'
underwear, matching bra and panty sets!
Day 21. A new
hobby I have taken up since my diagnosis is: researching reading and
learning as much as I can and educating as many people as I can that
will let me talk their ears off about it.
Day 22. If I
could have one day of feeling normal again I would: start kickboxing
again, go out w/ my girls and juke my lil heart away until I sweat my
perm out!!! Go panty-less whenever I felt like it!!!
Day
23. Endometriosis has taught me: that although it came close, that what
didn't kill me will DEF made me stronger; it taught me that real life is
what HAPPENS to you while you’re making PLANS for it; it has taught me
that the ONLY thing constant in life is CHANGE; It taught me that I can
face some of the darkest nights that life can throw at me, but the
Diamond in me we will SOMEHOW find a way to shine through, it taught me
that you can still be in the midst of YOUR wilderness and STILL help
someone else find a way out of theirs.
Day 24. Want to
know a secret? One thing people say that gets under my skin is: #1 You
need to hurry up and get pregnant – you KNOW you ain’t got that much
time left {THIS coming from DOCTORS!!! IKR!!!!} #2 'oooh girl, you go
through all that - I would just get they hysterectomy and be done with it!!
{THIS coming from chicks w/ a litter of kids runnin' around}
Day
25. But I love it when people: Are genuinely concerned about me. Not
feeling 'sorry for me', but sincerely being compassionate and trying to
understand. Gimme hugs when I need them, let me vent when I need too w/o
judgement
Day 26. My favorite motto, scripture, quote
that gets me through tough times is: #1 For I know the plans I have for
you,” declares the LORD, “plans to prosper you
and not to harm yo
u, plans to
give you hope and a future."
~Jeremiah 29:11#2 - I need you, you meed me, we all need each other - ~Pastor Danjuma Gibson
Day
27. When someone is diagnosed I’d like to tell them: If you need me, I
am here. Few people can say this and mean it, but I KNOW what you are
going through.
Day 28. Something that has surprised me
about living with an illness is: That I (unknowingly) went so long and
lived so many years with this w/o ever being diagnosed
Day
29. The nicest thing someone did for me when I wasn’t feeling well
was:{different people at different times} Bring me food when I wasn’t
able to stand/walk/cook for myself; took me to the doctor and stayed
with me; Ask me if I was okay and if they could do anything to help;
Held me and rubbed my tummy and my lower back when it was killing me;
Helped me throw up so I could rid of that nauseated ‘blah’ feeling!
Day
30. I’m involved with Endometriosis awareness month because: OVER 176
MILLION WOMEN, TEENS, AND GIRLS suffer from this disease and only a
fraction of people have ever even heard the word!
Day 31.
The fact that you read this list makes me feel: like you cared enough
about me, that I meant enough to you, that you would take the time to
see through my eyes, what it's like to live with endometriosis.
BE EDUCATED. BE ENLIGHTENED. BE EMPOWERED.
copyright March 31, 2012
Contact Michelle N. Johnson
www.essentialetherapeutic.com
info@essentialetherapeutic.com