Tuesday, March 20, 2012

ENDometriosis

I decided to wait a bit to write this post. I wanted to wait for a little while, digress and comprehend what has transpired a few weeks ago... It is my general feeling to think a bit before you announce your rage, frustrations or sheer joy because the world can change faster than one would like to admit. There has been many a time, where I- in naive joy or irritated disposition where I share things with the world I shouldn't have as 'it' ( the reason behind my verbal onslaught) and been entirely embarrassed when xyz doesn't pan out. As I get older and life seems to get slightly more complicated - I get a smiiiiiidge more jaded, but I learn! count to 10 before you freak out...... 1    2     3....    grr.

Like I mentioned in the previous post, I won't make this blog about endo, even though it is a huge part of my life. Be assured, however, that while my circumstance is irritating, painful and whatever else-- my life is postive and fun! I am enthusiastic about my future, and what crazy things I have started and this stone does not seem to be gathering moss any time soon ;) I say this, because it can be a bummer when you read the same sad boring shit over and over--- but this I just had to share. With whom? I don't know... designer & decorator friends maybe? My random and amazing twitter followers.... old friends and new, and whoever you are.
gif by naurallycoco 
 Over as week now, I had an incredibly emotional visit with my Surgeon, who has been treating my newly upgraded endometriosis that has found some space in my body, and has snuggled onto some intestines.. . That's my slightly adorable but mostly creepy way to tell you that my condition has been upgraded. If you can even call it "up"graded.... One usually associates the word "up"graded to getting a better room on vacation,  or perhaps getting free bread sticks with your pizza delivery.

Not this time around, this time-- I am hit in the face with some very hard, cold realities. I will try to avoid much blah blah about myself, and my endostory.. But this meeting with my doctor ( whom of which is one if the top in Ontario) has left with me more embittered, frustrated and feeling like almost..... cheated?

Endometriosis is a fickle beast and lots of women have it, to varying degrees and to varying pain levels. It is our modern concept that cramps usually associated with a period, and girls are told to take some hilarious pill like midol, hunker down in your room for a bit and cry until its over- making the next month scary and inevitable, but that's our purpose- some have even said to me that it is a woman's fate to feel THAT much pain...

no.

nuh uh.

If you really believe that, you need to seek a medical professional, or life coach.

WHY the hell is she so pissed you ask? Since I have started this whole shit process of understanding or coping with what reality I was faced with at 19 ( official first diagnosis) I have had 4 options... Take a contraceptive, get the Lupron shot, Have a baby or a hysterectomy .

hahahhahahahahahaha..... no really. 

THIS ARE MY MEDICAL OPTIONS. its been NINE F*ING YEARS. CAN YOU NOT INVEST IN THIS MASSIVE, RADICALLY LIFE ALTERING DISEASE....... anyone?.......... ugh,
                          lovelynothings.wordpress.com                                
My usually lovely doctor was a bit of a dick to me this time around, and insisting I try the pill in order to manage my pain. WHAT? here is the scoop with me and the pill... Ive been taking that freaking little drug since I was 11. Thats right. 11. I stopped taking it around 21, when I gave up believing what I was told, that the pill-- in all of it's doses, variations and colours did not work for me. In fact, sometimes, some pills made me  C R A Z Y
. My second option is a drug called Lupron. Lupron is a nasty shot, that essentially will make me menopausal for 6 months.. and Its a shot once a month- but a person can only take it for 6 months as it drastically zaps the calcium in your body essentially sucking the life out of my bones. Now.... this does work for some women... Lupron Depot is a heavy, intense drug that while it does claim to help with pain.. the side effects are i n s a n e
 
 
look! she dances!... this ad is funny. Read more about the side effects and flurry of non-sense lupron depot. 

this is also a big fat no. hell.. if HEALTH CANADA puts a restriction on this sh!t.. its not going inside me. Also... I am 28. do I care to be menopasual right now? not so much...

Maybe I am stubborn or jaded- don't know really and I can't say I would care if you called me those things. I know what I want to put in my body, and what I don't.... it is so frustrating when you have something like endo, and your told to cope.

I don't want to sound all preachy and $hit or take away from someone else's issue... but it is so infuriation that the medical world really has zero clue about endo and have been circulating the same 'remedies' for a few dozen years at this point. So many women's lives have been drastically altered by the removal of their life giving organs, when we know know that endo doesn't just live there. It does not go away. It will return even if you have zero reproductive organs. This, of course, is case by case.

My Dr. really wanted me to understand that I need to comprehend I have a disease. But made sure to say this disease will not affect the timespan of my life, but it will change my life. .   ..      no shit sherlock. The very bitter part of me stated leaving this appointment, as simply if Endometriosis was a form of a deadly disease we would perceive the disease as being serious, and dedicate time and money to learning and developing answers.  It was like a bad soap opera, with the words " cope with disease" echoing in my head in some terrible montage wearing an outfit entirely made of gold lame , rocking a terrible blow out  and blue eye makeup.

But let me be clear on this... for many women... Endometriosis does end lives, the onslaught of drugs and pills, the indifferent medical world and archaic views on womens menstrual cycle.

I can assure you, dear readers, that I have not taken this process like a complainy wench... Yes I seem a bit curt or angry in this post, but wouldn't you? I mean.... For most of my existance I have had this little dragon living inside my body, and friends, family and employers even had no idea why I was sick so much-- why I would be working away on some display, and the suddenly just fall to the ground like the end of a Ker-plunk marathon. Or why I have to almost become a recluse for two weeks as sitting the wrong way for two long could make me cry......  I am thankful for those people in my life who without question understood my scenario. %80 of the time I am bouncing off walls and always busy... creating work and being an entrepreneur and daredevil....

If anything else.. watch this video. Susan Sarandon speaks at a benefit thrown my Padma Lakshmi of TopChef fame .. two endo  sufferers who have spoken out about the disease.

I have found saviour  in natural paths and professionals who dive deeper into pharmaceutical research...  beyond newest pill that helps with one thing but creates more problems due to side effects. Recently, I have found a group of endo patients who are also speaking out on how this 'issue' should not be seen as a second class disease.... It may not be ravaging bodies and shutting organs down like a cancer would -- but I can promise you, it may as well. The physical toll of constant, nagging pain is similar to what you and emotional stress that comes with endo is debilitating. And I , for one, refuse to let this happen.

To my group of women..... I mentioned I would explain a bit more about how to use a Catsor Oil compress to help with endo... please allow me to share! Below is a list of tools you need to do this castor oil pack.. I don't get as technical and use very little extra cloths or towels.

 

- Castor oil helps the body separate tissues from its host, as any oil would... it has been used in the natural medicine world forever, and even before 'natural-path' became a dirty hippie word. Try this simple method next time you hurt.
- Using castor oil, soak a cloth in the oil or rub on your skin in the area you are focusing on. Don't go crazy with this stuff.. a little goes a long way.
- Next, protect your sofa/bed/clothes by wrapping yourself in saran wrap. or plastic... something that will hold the oil on your body.
- Use a heating source like a hot water bottle or heating blanket and place on top of the saran.. I like to seperate the hot water bottle and my skin with a tea towel... cause you know.. that shit is hot.
- relax. give yourself about 30 minutes, and do it maybe twice a week.

This will provide reflief from pain.. but you are essentially doing this to free your body of the renegade tissue that has put up shop where it doesnt belong.. this will help shed that stuff and make bloating and soreness evaporate... even if its the last few days on your cycle.

See the video below! I chose this video to post for two reasons. 1) the Beatles. 2) its a dude with a fit lil'body. .. heeeellloooooooh.


LONG ASS POST OH-MAH-GAWD-I-KNOOOOW. listen.. thanks for letting me work this out, listening, being there.... not judging... to my endo friends.... <3 <3



















3 comments:

  1. Thanks for sharing about the castor oil pack! I am most definitely trying this!

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  2. It is always good to vent. I will definitely give the castor oil pack a try. You rock!

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  3. thanks guys!! arrrrghhhh im sure so many of you know how I feel..

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