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Monday, March 11, 2013

MY STORY - An Endo Awarness Challenge

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!!!
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.

 copyright March 31, 2012

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