Endometriosis and 'Dancing With The Stars'

As readers of my blog know, one of my chronic illnesses is endometriosis. In fact, I had a complete hysterectomy at 32 because of it. I had 5 prior laporoscopies and one for adhesions after the hysterectomy. To this day I still suffer from chronic pelvic pain from endometriosis as well as other conditions. I feel qualified to talk about this issue at length because I have lived it since I was 17 years old. I feel for any woman of any age who has endometriosis, but it is especially brutal when you are young because in addition to the pain, it often causes infertility. In my case, I had an ectopic pregnancy and was never able to conceive again.

I am watching 'Dancing With The Stars' right now, and one of the youngest professional dancers, Julianne Hough, has been diagnosed with endometriosis and will be having surgery tomorrow to have her appendix removed as a result of it. My heart breaks for her. I believe she is only 20 years old.

The Lighter Side

I have previously confessed my enjoyment with 'Dancing With The Stars'. I have to admit I was looking forward to it last night more than usual. With dropping on my medication on my mind, I wanted something fun and easy to watch. I find that when I get out of my own head for a little while, whether I use relaxation methods, hobbies or even just taking time to enjoy a TV show I like, it helps me to focus on things outside of the pain or fatigue of my illness. It gives me a 'vacation from myself' for a few moments and reminds me there is more to life than chronic illness.

Last night however, I did get annoyed that Cloris is STILL on the show while people who are actually dancing are being sent home. I admire Cloris Leachman, the woman is 82 years old and is trying to dance for goodness sake--that's admirable. But, I think it is unfair to keep someone on the show just for that reason. Week after week other couples have been sent packing, couples who may not be the best dancers, but who were at least DANCING! I hope the producers and the audience will wake up soon, we are half way through this season and it is time for people who have talent to step up and for those who don't to go home.

Project Runway

Okay, I know I am a little late in posting on this, but I LOVE Project Runway and this season has been no exception. I admit I held my breath a little during the finale, not sure who would win. This is the first time the contestant I wanted to win did --Yea Leanne! I really thought Korto was incredibly talented as well, and I am sure she will go far in the fashion world, despite finishing second. As for Kenley, her attitude certainly didn't endear her to me, but I also felt she fell short as a designer. For me, her looks were too similar and too out there.

I discovered Project Runway when it was already several seasons on the air. I was confined to bed during a flare and there was a marathon of one of the past seasons on. I started to watch and got hooked quickly. Although I don't sew, I can appreciate the hard work that goes into what these contestants are asked to do. My mother always sewed when I was growing up, and I know how much work was involved in making each garment. In fact, my mother had wanted to be designer when she was young. She was enrolled in F.I. T. (The Fashion Institute of Technology in NYC) but had to drop out due to illness. Mom never got to live out her dream of designing clothes, although I am sure she would have been great had she been able to. I remember being a kid and just wanting store bought clothes. We were poor and couldn't afford the latest fashions. My mom made all my clothes when I was young, and unfortunately, at the time I didn't appreciate it. I thought it made me look weird and different. Now I would love to wear something made just for me! Isn't it funny how we realize so many things too late? My mom doesn't sew anymore, her arthritis makes it hard to do so and her glaucoma makes it impossible to thread needles and do the other minute tasks required, but she still has style. We have enjoyed watching this show together, and from her experience I get to understand the designers struggles in a whole new way. I also find I look at garments differently than I did before. It isn't just a matter of whether they are my personal taste, but also of how much skill, effort and ingenuity went into making them. I learned that from mom as well.

I realize that fashion isn't the be all and end all of the world, but it is fun to have a show to enjoy with all ages, that shows people sacrificing to make a dream come true. I guess I enjoy it in a similar way to 'Dancing With The Stars', I live vicariously through the contestants. My body and my skill set won't allow me to do those things, but in my dreams I am there competing as well. I also learn things along the way, about myself and about others. Hey, it's not PBS, but sometimes it is fun to be entertained, especially during a long, painful flare when you want desperately to focus on something outside of yourself.

Flare Care

As all of us with chronic illnesses know, some days are better than others health wise.  I am in the middle of a particularly painful flare right now.  Fortunately I have learned over the years to expect these times, and I have certain self care strategies in place to make things more bearable.  If you have lived with any illnesses for a long period of time, you probably know what I am referring to.  If you are new to the world of chronic illness and it's rapidly changing ways, then now is the time to start making your own list of "survival" strategies.  They can range from the very practical to the very whimsical. 

The type of flare I happen to be experiencing right now is made much worse by things like eating, moving or even talking too much.  Because I know this about myself, I have learned to always keep certain foods that I can usually tolerate small amounts of, around the house.  Since staying hydrated means staying out of the hospital (my own personal number 1 goal!), I also keep things like gatorade, individual cans of caffeine-free Coke to flatten (settles my tummy better than most medications without the side effects), bottled or Brita water and an assortment of teas on hand to keep me sipping on beverages throughout the day.  I eat only when I must to take a medicine, knowing that as the pain abates, my appetite will return, and that I will not die from two days or so of improper nutrition.  I have certain pillows that I use to help maintain my position in bed, since I have to sleep sitting up when this happens.  I allow myself the luxury of just washing with a washcloth to avoid the movement and water of the shower, which really increases the pain.

On the less physical and more nurturing side of things, I find it hard to read much due to the pain and the medications I am taking, so instead of whatever book I might be absorbed in at the moment, I always have on hand some good magazine options, some puzzle books and even the occasional catalog.  It gives me something to flip through that doesn't require a lot of focus or thought, but takes my mind off of things for a few moments at a time.  I also keep a supply of funny DVD's, especially TV shows that I really enjoy (Friends, Mad About You, Gilmore Girls, Gidget, That Girl) anything that isn't too heavy and that makes me smile usually helps the pain as well.  I don't answer the phone unless it is necessary.  I use my caller ID to screen calls and let my voice mail pick up most of them.  That way I don't have to expend energy or cause pain trying to explain that talking makes things worse.

Most importantly, I listen to my body.  If anything seems different or strange from my usual "attack", then I contact the doctor.  After many years of going through this I am very good at gauging what will pass and what needs immediate attention.  My advice to anyone is "when in doubt, contact the doctor".  Much better to be safe than sorry that you mistook something more serious or needing immediate attention for just another flare or a new symptom of whatever your own illness is.

Lastly I practice meditation, biofeedback and use visualization.  All of these things can be learned and are helpful in controlling pain, as well as breaking the cycle of fear/anger/resentment that this is happening again.  I use them on a regular basis to help maintain my health, and as another tool when I am in the middle of a flare.  I can't say they make it "all better", but they make it more bearable.  By relaxing my body and my mind, it allows both to have the energy it needs to help me to heal.  Along the same lines, because I am a religious person, I pray.  I find that for me, knowing that God is there makes everything feel less overwhelming and brings me great comfort.

I would love to hear from all of you the types of "flare care" you employ for yourself.  As a group I have never met more creative or resourceful people than those who live with chronic illness.  I am sure we can learn a lot from one another that would be useful to our own situations.