T.B. Pasquale

Posts Tagged ‘chronic illness’

Glamour magazine’s August edition published an article “Endometriosis & Polycystic Ovarian Syndrome: Two Women’s Diseases Doctors Miss Most: Could You Have One?” by Hallie Levine Sklar.  The subheader read “As many as 20 percent of women have one of them, but it can take years to be diagnosed with endometriosis or polycystic ovarian syndrome.  If you or anyone you know is suffering, this piece is required reading.”  I, and many people I know are suffering, and so of course, I read further.  As I did I pondered the people I know with this condition.

All of us had suffered for an average of 10 years with the pain and side effects of our respective conditions {mine, as I have disclosed before, is endometriosis}.  All of us had, had symptoms going back as far as middle school or early high school.  All of us had been told by professionals and trained gynecological and other specialists for years that it was “normal” and “just part of our regular body functions” and had been shuffled off or sent home with pills or heating pads {I personally have burnt out innumerable heating pads, yes, they can burn out}.  All of us had to lobby and be our own advocates when the pain and effects became too great to ignore or just hide in bathrooms on floors crying for nights on end.  All of us only got “diagnosed” after much personal research, seeking out of the proper experts ourselves, and even more lobbying to be tested and checked for more than just a “normal” woman’s bodily function.  All of us were right.  All of us were ignored.

So, as I read further in this article in a popular women’s magazine I sighed that sigh of relief you get when you can put down your picket sign and let someone else talk about the issue for a moment.  And I thank you Hallie Levine Sklar for doing just that.  This article was full of all these truths that so many women I know and myself have suffered through.  It talked about the average decade from onset to diagnosis that went unheard for many, I would say most, women with these conditions.  I know all the women I can think of diagnosed with this condition are in their 30′s or older and all have received their diagnosis in the last 1-5 years at most.

Empowerment.  Advocacy.  Strong words with strong images conjured up of picketing, signs, and a lot of riot grrl roaring.  We often forget in the mix of it all to lobby for ourselves as much as anyone else.  Even if it means being our own champions against the “experts” and saying how we feel and not backing down when we aren’t being heard.  Even and ESPECIALLY when it comes to our own health.  I learned this the slow and painful hard way.  I spent years in certitude that the professionals in the medical community that I went to time and again when the pains increased, the ruptured cysts persisted, and the nights spent on the bathroom floors crying multiplied, all told me that it was “normal” and to go home and use my heating pad.

Finally, three years ago, and after a month spent more out of work than in the office, I began to research, and research, and research because I realized no one was going to listen to me until I had something specific I wanted to say besides, “It really doesn’t feel normal, isn’t there anything else you can check for?”  I self-diagnosed in one afternoon between the wonderful forums and information rich sites of EndoResolved ,  Endometriosis.org , The Endometriosis Association , and The Endo Research Center.  By the end of one day I had assessed that all my symptoms from gastrointestinal to bladder to ovarian all linked up and all the questions about what was wrong with me was answered…with one day of google searching.  After I got through my stages of grief..skipping denial {everyone else had done that fairly well for me} and straight into anger and zipping through into acceptance.  Acceptance of the way I had been ignored about my own body for so many years.  Acceptance of the fact that my anger, while justified, would not change the past or the responses I had faced.  Acceptance of the knowledge that if anything proactive was going to be done on my behalf, on behalf of my wounded body, I would have to do it and not take “normal” as a response to my issues any longer.

I advocated and was forced into a role of empowerment in a medical system I did not understand all the way to the surgery table.  One of the major issues with endo is the fact that no MRI or scan will show it.  You have to do a simple laproscopy to look for it and assess if it exists or not.  I was never one ready for invasive medical procedures but 10 years of pain made me want to know, and all my research made me need to know if I was right, my body was right, and the medical professionals all along my journey were wrong.  They were.  Once I finally had the procedure they found a pretty severe case of Stage 3 (out of 4) endometriosis which had, in 10 years of growth and damage while statements of  ”normal” were leaving it alone to do its dirty endo business, eaten away at parts of my fallopian tube on one side, and adhered itself to my bladder, ovaries, and bowels.  ”Told you so,” just didn’t seem to bring satisfaction.  But getting all that garbage out of my body definitely did.

Reading Ms. Levine Sklar’s article and hearing the statistics yet again, the stories of many other unheard women’s voices, and many oblivious professionals, stirred up some of my old picket sign grumbles.  I felt a need to highlight the well written article and this issue which is pervasive in the female population.  Both with my condition {endometriosis} and that of many friends of mine {PCOS; polycystic ovarian syndrome}.  Both which, left untreated, can lead to issues with fertility as well as a variety of organ damage and a gamut of painful symptoms not only for the female organs but many other parts of the body including bowel, bladder, appendix and others.  Just scour the forums on EndoResolved for a day and you will begin to see the number of illnesses linked to endometriosis and the ways it can exacerbate a number of medical issues.

I am finishing up a series on SELF CARE as an E-COURSE over at www.wishstudio.com this week and last week’s course material was about EMPOWERMENT {I will be offering this course in full and in pieces in my new products page shortly}.  Reading this article reminded me how important empowerment can be not only for our feelings of self-worth and confidence but ultimately and in extreme cases, can be vital for our health, longevity and quality of our lives and bodies.  We can be the one voice for ourselves {as well as others} when no one else, even professionals, will listen.  There are, I will say, a number of very well-educated and well-versed endometriosis and PCOS medical professionals out there whom I respect greatly and, when I finally found them, were very helpful in my further understanding of and treatment of my endometriosis {a chronic illness that will be with me at least until I have  hysterectomy one day, possibly, based on some data, even after that}.  I will also say that I had to find them myself after years on a medical journey that others were steering off course.  I had to take the reins of my life and take the steering of my own ship before anything was done.

Know that your voice does matter.  Your instincts and those pangs in your gut are telling you something important.  Don’t discount yourself just because someone else does, even if they have letters after their name {I say this being someone with letters after my name and knowing I am human, not perfect, and although I am not a doctor I would not say I was the authority on your life even if I were your therapist}.  Listen to yourself.  Be the voice for your own causes.  Know that sometimes the battles for self are the most important and need a champion.  You are not wrong just because someone, and sometimes many someones, tell you you are.  Believe in you.  I finally did in the case of my own long battle with chronic illness and although I am not “healed” in the biological respect from that ailment I am stronger for having fought and my body thanks me.  Now I have the information to move forward informed on what is best for my condition.  My thoughts go out to all the women battling endometriosis, PCOS, or any other painful condition or issue in silence.

 

I always loved the chewy taste of a rare, juicy, meaty steak and even when I would have “bouts” of vegetarianism for a week or a month I always said it was just for healthful purposes, I wasn’t one of those people who wouldn’t eat meat because it was mean to the animals because it seemed an unrealistic premise–we were born omnivores. Recently I have been having a change of heart and stomach.

The steps on this journey are as follows:

• Watching the movie “Avatar” of all things and being reminded of the ancient, native traditions of blessing all animals that give us food and killing them in kind ways (reminiscent in the movie of Native American traditions where the animal is given a blessing as and after it is killed).
• Reading John Robbins (heir to the Baskin Robbins throne) Food Revolution which was by mandate for yoga school but brought me to a new consciously aware place about what I eat, where it comes from, what that food can do to me, and what was done to it before it got to my plate.
•  The desimation of our Iguana population at work by people poaching them for food.
• And Max The Duck who wanders in front of our door (at work) with more and more frequency and who I find myself conversing (well briefly) alone with at 730am when I come from meditation to work very early and he is waiting hungrily for the crackers I feed him.

 

My realization that my consciousness about what I am doing and what is being done to others calls me to see that as a real piece in the process before my trip to the supermarket for plastic wrapped limbs. My learnings from yoga school to the amazing lecture by Richard Rohr who was introduced at the beginning of his lecture on his new book The Naked Now as part contemplative mystic and a proponent of eco-spirituality. He spoke about all the same wisdom as my yoga teacher in terms of our relationship and treatment of the world around us and how reflective it is of our inner selves–how neglect of these things are as much spiritual void as nature negligence.

My world and life, as it often works, seems to be circling back to an eco-friendly framework. One that spans beyond just recycling when I can and trying to be sustainable in a small scope. In a world where livestock has become an industry of warehousing and cruelty unless I plan on building a humane farm for one there is no way to really participate in mainstream omnivore lifestyle without being an affront to consciousness and conscience-ness.

This is of course a personal plight and journey and I by no means want to send waves of negativity towards the vibrantly carnivorous among us (ahem, my husband). I have not decided yet how this new attempt at gastronomy is going to go or what I am going to leave on the table–literally or figuratively.

What I do know is that I will have to do whatever I do with awareness and mindfulness of what I know and not be capricious about eating at any level. I think it is, also, no random coincidence, that my dietary suggestions for my chronic illness (endometriosis) include avoiding, if possible, most meat and most dairy altogether. Perhaps I am on a path I was meant to be on–spiritually and corporeally.

 

“The body never lies.”

Martha Graham (famous dancer/choreographer)

  

 

Practice what you preach…it is essential, no?  It is a bit of a duh, if I do say so myself.  Well I just had a moment of sorts over the last 72 hours—a long harsh moment of reality thrust upon me, necessarily and with excellent timing (in the script of my life this is just where I would put such a revelation).  It was a moment—call it a “duh” or an “aha” or an “epiphany” if you will—that reminded me of the importance, non-optional and crucial nature, of holistic living in my own life. 

 

I talk about it with passion until I’m breathless and I vocalize it to anyone who will listen—a complimentary medicine and holistic approach to life is vital for full mind, body, and soul healing.  And although I work towards my own holistic health in baby steps I am not quite the vibrant enactor as I am the vocalize—I am a bit sluggish, sometimes even a bit resistant for all of the reasons I know that people are. 

 

I am stagnant in my old ways of thinking and living.  I am full of negative learned behaviors cultivated with great art over the years.  I am sluggishly lazy about making the alterations in full that would be necessary for living a truly clean, green , and healthfully mean life.  It is a scary prospect—to so drastically change our life patterns.  Yet at the same time to do so is so logical and such a small concession in the grander scheme of things—taking into account a longer, healthier, and less painful existence on all levels.

 

This week has shown me, that like the diabetic person that has not option of whether to take care of their body and their diet as they must do what is necessary or suffer serious, even life threatening consequences, I too must look at my holistic health from a more serious perspective.  Every move I make, or don’t, every substance, hormone, and edible thing I put in my body affects the state of it. 

 

I have (as much as I have been trying to ignore the severity of it for some time) a very serious and chronic illness which only becomes more pervasive and debilitating with time.  I am in a crucial stage of “change” or “be changed for the worse”.  I am on the precipice of a life and a body that could go either way and I have to treat the care of this bodily casing as if it were a life or death situation—it is at least the life or death of my womb that is at stake (not to mention the surrounding organs that are often ravaged by endometriosis like the bladder, bowel, appendix, among others–two out of the three I already have scar tissue on from fusing of organ to organ , by endometriosis growth, prior to my first surgery). 

 

I can no longer say, “Tomorrow I will live better,” or, “Just one more bagel can’t hurt,” or, “I’m just too tired for yoga today.”  I have to effect a lifestyle commiserate with the seriousness of my health, the necessity for self-care as a priority, and an active holistic approach to healing that I know to be so vital.  I can no longer sit on the sidelines of my body and wait to see what happens.  Proactive is the only way. 

 

It is hard, we all know, to shift so drastically the things that inhabit our daily lives, routines, and ways of being.  I know mine is somewhat of an extreme example of how everything we do, consume, imbibe and how it affects our internal and external health, but in some ways this drastic perspective on living is something we should all work harder to enact—and no one knows better than I how much of a struggle it is to do that. 

 

But I know, too, that my every moment and lifestyle decision affects me holistically so I must live taking my whole self into account.  I know that when I have steak, dairy, soda, and white bread my cramps worsen.  I know that and I ignore it quite often. 

 

My body gives me all the signals I need of how to care for it and thus far I have been very capricious with this precious and delicate physicality that I have.  But I can’t be a sideline player in the game of me versus endometriosis.  I have been reminded and reinvigorated by the knowledge that this illness will get worse—how fast and how much is really up to me, every day, and in the choices I make. 

 

We have much of the control over our living, but so often we don’t enact proactive (w)holistic health because it seems too hard or too much.  Well, I can say from experience that the alternative, what can happen when we don’t care for this precious container for our mind and our soul, is much worse than working hard to live well.

 

I hope that this–my life, my body, my situation–can be a reminder to everyone of how precious this life is and how precious these bodies are we have been given.  We owe it to ourselves to take the best care possible of it before something (and something can happen to anyone) happens that makes us realize it is too late to effect changes and damage has been done.  I, myself, am at my own precipice, facing my own “duh” moment and I have big changes to make to create a life  not just of forethought and promises of change, but a life of making that change—I am the one who loses if I don’t.  Life is not a sidelines game and our bodies are vital in the holistic care of ourselves—body, mind, and soul.

 

Daily yoga, clean eating, and beginning active courses of acupuncture will be my first steps to getting my body to a better place to fight the internal enemy that waits, biding  it’s time to eat away at me, from the inside out.  I can create a defensive line that can really save or at least preserve my internals for a longer time, not to do that would be dangerously capricious.  I no longer want to be dangerously capricious. 

 

This blog, this move, this timing of beginning yoga school soon and actively working towards a more yogic, meditative, healthier lifestyle seems (as I said above) to be almost a scripted path I am on.  What a more perfect time for me to be forced to take seriously the severity and vital nature of this life path I am treading on and the life health I am preaching to others.  “Practice what you preach!” my life is yelling at me from every angle imaginable–or beware the consequences. 

 

I prefer to listen to what I have been given and make the necessary changes to myself and my lifestyle that have been a long time coming and necessary to have a long time yet to come.  Endometriosis may be the internal enemy but I would rather to be fighting against the enemy, not aiding its troops with my every action.  I know for everyone effecting changes of any kind is a huge undertaking and no easy task–change is hard.  But change will come whether you enact it or something else does.  Proactive living is much more empowering.  I hope to finally be able to say, with no wavering, or equivocating, that I truly, holistically, practice what I preach.  I must, my body tells me so.

 

 

“The body is your temple.  Keep it pure and clean for the soul to reside in.”

B.K.S. Iyengar, Yoga: The Path To Holistic Health