Tuesday, February 28, 2012

My Pain, My Creativity, My Life

So, faithful readers, I apologize for not putting up a post in so long. This is, quite literally, the first day in over a week and a half that I have not felt completely unwell. I'm not saying that I feel FABULOUS today, but at least I'm not on death's door...

Last week, Lori (a fellow jewelry blogger, whom I follow for her beautiful work and lovely personality) wrote up a lengthy post that I truly connect with with my entire heart and soul... it is titled "Pain Versus Creativity."

See? Even the Dread Pirate Roberts understands... you should all know the caption that is associated with this photo~

The truth is, my health is frequently an issue that, until this point, I have frequently swept under the metaphorical mat. I tried not to talk about it because the more one talks about things, the more "real" they become... and this is a reality that I wanted about as much as one wants dental surgery! I have told some number of family members and friends about the details of my health, but this is the first time that I have spoken out to the community at large.

Now, I don't intend to throw a pity-party-- no one likes those-- but when I read Lori's post, I found myself crying from the emotion of someone writing down EXACTLY how I feel about things. The idea that someone else out there understands how I feel, and put in a public forum, gave me the courage to write about my situation.

I have what is known as an Adhesive Disorder, caused by Endometriosis. The situation that I am in is quite complicated, so for now I will hold off on the exact details of what is going on with my body. I'm not ashamed to tell my story, but it's so complicated that it will take much more than a single blog post. For today, though, I will tell you all what this means for me, and how it affects my life.

I am in chronic pain. Many people use the word, but few mean it quite the way that I do. I am in pain, quite literally, every second of every day-- from the moment I open my eyes in the morning, until I go to sleep at night. Pain that wakes me up in the night, from a sound sleep. Pain so severe I cry from it. Pain so excruciating that recovery from surgery is less painful than what I deal with on a day-to-day basis. Pain so unbearable that a bikini wax seems like a gentle tap by comparison. Pain so debilitating that it's hard to move around without limping severely.

Pain that will potentially stay with me for the rest of my life.

Pain that caused me to completely abandon a career path-- teaching-- that I absolutely loved.

A painting by a former student. I could be wrong, but I'm pretty sure the one in the middle is me... and yes, I still have all the artwork from my years in the classroom. I wouldn't give up that "porfolio" for anything!

The reason that Lori's post resonated so strongly within me, is because of the words she used. "Invisible pain made me feel like an invisible person -- hiding out in a dark room, being deprived of all the things I love to do." Never were truer words spoken.

My health touches my entire life... career, friendships, finances, social outings, even my passions. There are days that I need to tell friends that I don't feel well enough to see them. There are days when I don't leave my bed at all, and I can't even knit because of the pain. Days when I can't go down to my studio and paint, or make a necklace, because it requires too much movement. In many ways I have become an "invisible" woman, especially on those days when no one sees me.

Now, I know that I am a very lucky lady. I am blessed to have an opportunity to stay home and create beautiful things. I have been gifted with an artists' soul, and the ability to create works of art. I can do anything that I set my mind to do, and I have a (hopefully long) lifetime ahead of me to do just that. I am not happy about my situation-- I don't know that I ever will-- but I am gradually coming to terms with what I have to deal with. I continue to move forward, because there is no going back to how things were before.

In closing today, I am again borrowing Lori's words, from her post regarding pain. She told her readers, "Don't be afraid to share your story.  Don't be afraid to hide your story.  Either way, the point is to make your soul more peaceful in whatever way you feel comfortable, and to be gentle with yourself." I will add to these words of wisdom, something that Lori mentioned, but in my own words. Something I tell people when they are in need.

No one is ever truly alone. Seek out people who truly care; help carry their burdens in life, and they will help you carry theirs. To all you out there, who are dealing with your own troubles and pains... you are not alone. <3

7 friends stopped by to chat:

Lori Anderson said...

I'm glad my post helped. I have had several surgeries for endometriosis and I know you say yours is a special case, but I can imagine the pain. I'm also glad you know you're not alone out there!

YNP.214 said...

Oh Jules, how my heart goes out to you! But you already know that!

No one would ever know of your pain from your writings.
You have got to be one of THE most up-beat/positive people I know!!!
You are a joy to know.
You make a difference in my life!

Julia said...

Lori, again your words amaze me. Thank you so much for your kindness in stopping by, and for again bringing me joy through your words <3

I'm sorry to hear that, on top of all your other problems, you have Endometriosis as well. It's unfortunate that you can imagine my pain~ I have told many people that I wouldn't wish this situation on my worst enemy~ but unfortunately, those who have "Endo" usually *do* understand.

I must sound so melodramatic, describing my situation as a "special case"~! To be honest, though, I am a medical anomaly, even among the Endometriosis community. My set of circumstances is found in no more than .5% of the entire population, most likely the real numbers are even less than that. I'm bad with percentages, you see.

See, I barely had any cysts when I went in for surgery-- any that I have are hidden underneath the dense adhesions. The doctor who performed my diagnostic surgery found only one endometrioma, very small; my entire pelvic cavity is full of adhesions, however, and they are tying all my organs and ligaments together down there, like glue. That's the primary cause of my pain, and the reason that I have trouble moving around.

Doctors are stumped when it comes to treatments, because they try to treat my case like all other cases of Endometriosis, and give me medications that are designed to shrink the size of the cysts/endometriomas. Surgery would give me one year, maybe two without pain, but it would almost definitely come back, and the area where my adhesions are most dense is a place that is dangerous to operate on even once. There is one physical therapist group, across the country, that has developed a technique that helps break adhesions apart, but I would have to move there to actually get anything out of those sessions!

I could go on and on about the treatments I've tried-- and I've tried an awful lot!-- but the bottom line is, there is not much that I can actually do about my situation except keep on going, and keep on living as best I can.

It took me a while to realize that I'm not alone. On one hand, I've always known it because my mom has the condition too... but on the other, as you explained it, pain is an incredibly lonely and isolating condition of being, especially when you're like it all the time!

Since getting my diagnosis, I've actually met many strong women with the same condition... I call them my "Endo Sisters." None of us are actually related by blood, and not a one of us is affected in the exact same way, but our shared experiences help keep us strong, and remind us that we are NOT alone.

Again, Lori, I will say THANK YOU OH SO MUCH. You are a love, you are a dear, and you are so kind for reaching out to me. If you ever need support with your situation, please don't hesitate to contact me <3

Julia said...

Yosie, you are too kind as well <3 I'm glad that my pain doesn't carry through to my writings~ like I said elsewhere, I don't like to complain. Hell, I feel badly even spending ONE post writing about my health~ I had originally told myself that I wouldn't ever do it!

Not only can I feel the love that you're sending, I'm glad to hear that I make a difference in your life, and that you think so highly of me! You make a difference to me, too-- you have such a strong spirit, and such a sense of humor! I look forward to communicating with you for a long time to come <3

Jean A. Wells said...

Well, I have found this post for some reason. Can I join your Endo crowd. Mine has not been bad - had surgery for it about 24 years ago and that took care of it. Now that I'm no longer having periods, no problems at all. But I remember. I remember the pain I used to have. My husband didn't understand and I used to tell him that I wish he could have just one of those Endometriosis periods. Boy that would have shut him up.

While its true that talking about things can make things more real, it can also be an effective tool to work through the process of reasoning that leads you to coping mechanisms - if not an out and out cure.

Hang in there girl. You are not alone, even if you feel like it sometimes.

Julia said...

Thank you so much for your kind words, Jean <3 I have found so many others who share my story, since getting my diagnosis-- the pain is so isolating, but it definitely helps to know that I am not alone. Thank you for that affirmation~!

I often think that things happen for a reason-- fate, or whatever you want to call it, has an interesting path for all of us! Much like you stopping here and finding me, many things in life happen for one reason or another.

Thankfully my husband is understanding regarding it, but even with that it's hard for him to *understand*. He is supportive and sympathetic, more so than many would be in his shoes, but I know what you mean. I have often said to people that I wouldn't wish this situation on ANYONE, but I would like those who are unsupportive to walk in my shoes for one day and see how well they deal with things...

I don't think this is the kind of pain that one can forget easily... it doesn't surprise me that you can still remember! I know what you must have gone through prior to your surgery, but I'm happy to hear that you had a successful recovery. That being said, once an Endo Sister, always an Endo Sister... so welcome to the "club", sweetie, and thanks for following my blog! <3

shelly said...

just found this post, julia...

you are an inspiration to me!!

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