Archive for category Endometriosis
What a journey. The last few months have been a wild ride. Here are just a few highlights:
-finished my first semester of nursing school
-found out I was moving to California
-started a new medicine for my endometriosis (didn’t end up working)
-got my house ready to sell and had a giant garage sale
-experienced a huge spike in my endo pain
-went on vacation to Florida with J’s family
-sold my house
-got everything packed and moved to storage in California
-spent a lot of time with my sweet Momma while she took care of me and helped with moving preparations
-moved into a hotel until we actually move to Cali
-had laparoscopic surgery to remove endometriosis (surgery slightly successful but still in a ton of pain)
-went to California to figure out a living situation
Whoa! That’s a lot of big stuff. Now I’m back in town for a few final weeks tying up loose ends and saying final goodbyes. While I’m so excited to begin this new chapter of my life I’m still processing what a roller coaster this summer has been. It feels like I ought to be leaving all this pain behind as I adventure on to the beautiful central coast of CA. Unfortunately, it will be coming with me – another piece of baggage trekking halfway across the country to my new home. Darn it. The medical adventure continues as I research new doctors and pain clinics in the area that might be able to help. While it’s frustrating to keep fighting this battle, I’m optimistic and hopeful to meet with better/more experienced health professionals, especially in such a beautiful place.
While I still wonder about my future (health-wise) and what it will look like, I realize that wondering is really just worrying disguised as optimism and doesn’t get me anywhere. I’m just going to try to sit back, relax, and enjoy the ride. I couldn’t ask to move to a better place and I feel so blessed. Despite all my “wondering” I am SO excited about the next couple of years. I have this weird, general feeling of joyous anticipation, like something really good is just around the corner.
I’ll try to keep you updated on my journey. Maybe I’ll even share some of the humorous bumps in the road from the last couple of months. You really have to hear the one about the giant handlebar mustache…
…more to come 🙂
My dear mother has been in town the past week taking care of me (i.e. making me food, bringing me water, cleaning my house) while I lay moaning on the couch. As I’ve been homebound for the last couple of weeks I have really missed seeing, well, anything other than my living room. With this in mind, Mom decided to take me with her to run some of my errands. Since we needed to go to Wal-Mart, we tried to figure out the logistics of what I would do since I can barely walk the distance from my couch to the bathroom. Would I wait in the car? No, too hot. Would I sit on the bench in the front of the store? Well, I really wanted to help pick out the things I needed. The solution? Mom would push me around in a wheelchair.
I never in my life imagined having to be in such a position. As a very independent I-can-do-it-myself-in-my-own-way kind of woman, having my mom here at all has been a test of my ability to depend on others. Now, my dependence was pushed even farther, in a very public way. It’s hard for me to put in to words how humbling the whole experience was. I gained a whole new perspective on what it is to be “handi-capable” and the challenges that disabled individuals face every single day. Something so small and trivial, like going to Wal-Mart, becomes a painful luxury. Traveling the store becomes a whole other challenge as it is a huge distance from one end to the other, and only half of the items are placed at a reachable distance from a wheelchair.
Despite the humbling nature of such a little outing, it was really quite nice to get out and see other things although I was thoroughly exhausted by the end of it. In fact, we went to Wal-Mart again today, wheelchair and all. 🙂
There’s not much to see from here, but when I’m experiencing severe endometriosis pain, this is where my life takes place. I’ve been here the last couple days and I’m starting to get pretty familiar with my surroundings.
My world exists in concentric circles surrounding the sofa… In the first circle (the one closest to me) is everything I might need, immediately within reach: various pain meds and balms, tissues, my phone, water, pencil and paper (to chart how I feel and when I take medicine), a good book (collection of Sherlock Holmes stories at present), and the TV remote. The second circle contains items I can reach with minimal effort: the computer, the TV, and a book shelf full of books and movies. Everything in the third circle and beyond requires thought and a plan: the refrigerator/kitchen, the bathroom, the bedroom, the laundry room. Do I really need to go to the bathroom yet? Can it wait? I really want a sandwich, but that means I have to get up to make it… Yep, I’m hungry enough.
This may all sound pretty dismal, but it’s really not that bad. Yes, it gets a little boring and I get tired of laying around, but it is what it is. I actually have a really nice view of my backyard and the sky from here. I love it when there’s bad weather going on because I like watching the clouds change and especially the rain. I can see the birds flitting around out there too which is pretty amusing. You get used to appreciating these little things.
When the pain subsides I jump up and go to the bathroom/kitchen/etc, or sometimes out to the garden to pull some weeds and see how my plants are growing. This is the highlight of my day.
I pet my cat and try to keep my area picked up.
It is what it is. Sometimes it’s frustrating (especially because I’m on a treatment that is supposed to be preventing pain). Mostly I’m OK though. There’s nothing I can do about it besides ride it out. So I spend a lot of time on facebook to feel like I’m connected to a social life. I read books. I order more books, some about dealing with chronic pain, some about far-off exciting places. I try to make myself look as pretty as I can, even in my stretchy pants and t-shirts.
I’m really thankful that I’m not in school or working right now and that I am so blessed to have a husband who can provide for us so I don’t have to. I honestly can’t imagine what it would be like to have to even think about working or studying in a state like this. I am so lucky.
I wonder if I’ll ever be able to fulfill my dream of being a nurse. Sometimes I feel pretty good and can be out and about, but a lot of times, I don’t. Will I be able to finish my degree? Help people like me to feel better? Maybe work in a mental health ward or substance abuse center like I dream about? Can I physically do it? I sure hope so. But I know worrying about it doesn’t get me anywhere, so I’ll just keep dreaming.
I’ll keep lying here on the sofa, watching the clouds float by, and the flowers grow. I’ll keep trying to make the most out of these days and feel like I am still contributing to life and society. I will read, draw, study, and write. And I will pray.
“Without the bitterest cold that penetrates to the very bone, how can plum blossoms send forth their fragrance all over the universe?”
— Dogen, from How to be Sick
I’ve felt under the weather for about a month now and with that usually comes a pause in my running and blogging. Unfortunate, I know. So about that…
Sunday at Wayfare (my unbelievably loving, accepting, genuine, and amazing faith community), Roger directed the conversation to what we center our lives around. Most of us “Jesus-followers” claim to be (or at least desire to be) Christ-centered although that often isn’t the case. So he asked what our lives do center around. What shapes our views, values, beliefs, or daily lives? What directs and influences how we live? I was shocked to find that the first the that came to my mind was “being sick.”
Each day revolves around how I feel and what I can handle that day. Lately fatigue has been plaguing me like none other. I find the pain I experience is the main cause and only compounds the tiredness. I can get enough sleep at night and come home to take a two hour nap. Each thing I do seems to wear me out and I barely have the energy to do the essentials. So each day I plan when I have time to sleep, or try to figure out if I will have the energy for school, homework, etc. Will I have a break in between things? Do I have snacks to keep me awake? Can I squeeze in a nap? I have a doctors appt next week to discuss these problems but in between I’ve been doing a lot of thinking about how much my illness determines how I live.
I just started reading Toni Bernhard’s book How to be Sick which I think is going to give me a fresh perspective on how to accept illness and live completely within the reality of my limitations.
I want to find satisfaction within my situation. This is difficult to do, especially when I’m still trying to find a “cure” – still going to PT, going to get blood levels of vitamins and thyroid/adrenal hormones checked, trying new diets, trying different vitamins and supplements, trying everything. But. Life wouldn’t be interesting without a challenge. So here I go, trying to learn “how to be sick.” Wish me luck! 🙂
…more to come…
What does your life center around? Through illness or difficult times how do you maintain quality living?
I am a whole comprised of many parts. Here are some of them that I feel especially define me at this time in my life:
Old Soul: I’ve always felt older than I am… I used to drive an old lady car, I have old lady aches and pains, I get tired a lot faster than other people, I MUST get enough sleep to function, and while I enjoy the occasional night out, or house party, I often prefer a quite night in with movies and beer. I used to hate that I felt older than my age. Now I realize it’s who I am and it’s better to just embrace it, accept it, and enjoy it, rather than try to be someone else. Accepting ourselves for who we are makes for a much happier life.
Woman: March is Women’s History Month. There have been so many fascinating, successful women throughout history who have defied opposition and judgment to shape the liberated life I’m free to enjoy. Despite all these wonderful female examples (and my old soul self) I still struggle with what it means to be woman. The massive amount of stereotypical images and information about what women are/should be makes actual womanhood even more confusing. I’m gradually developing an image in my mind of the complex, delightful meaning of who I am and what I am capable of as a female, and embracing all of my womanly potential. It looks a lot like this description written by my good pal Krista (a fabulous and fearless woman herself): “Women are also strong, and talented, and wise, and meek. They can be confident or careful, sexy or shy. Women are athletic and creative and beautiful and fun.” She is currently writing a series about influential women in history on her blog, Reviving Identity. I’d encourage you to check it out.
Advocate: I have endometriosis. You all know this. And I will continue to tell my story to increase awareness. I’ve said this so many times and will continue to do so: “Without awareness, there is no cure!” The world’s most brilliant scientists still don’t know what causes endo (although they have several uncomfirmed theories). They still don’t have a cure. And millions of women continue to suffer (often silently) in pain. This is not OK! I am passionate about this issue (particularly since it’s personal) and I will fight for the rest of my life to increase awareness, funds, and research. March is national endometriosis awareness month and by this time next year I hope to have planned an Endometriosis 5K. It will be hard and challenging and I’m still not entirely sure if I can do it, but I’m going to do all I can to make this happen in an effort to raise awareness, and of course money, to donate to the Endometriosis Association.
Runner: As I mentioned above, I’d like to increase awareness through a race. Running is my anti-endo. The one thing that can really make me feel powerful when I’ve had so many times I’ve been laid up on the couch, curled up in a ball. Despite the pain, if I can get out and take one step, just one jog around the block, I’m releasing powerful endorphins (body’s natural pain killers). Often, after just 30 minutes of pounding pavement I feel some relief and, if nothing else, I feel mentally and emotionally stronger and empowered. Running brings me joy and clarity and a break from the hectic-ness that is my life. It is part of me.
Learner: I am officially immersed in the depths of nursing school and I will be until Dec 2012. I am brain-deep in books, education, theory, tests, clinicals, homework, etc… It is GREAT. and HARD. For the first time in my life I actually really have to try. School has always come quite easily for me and this is the first time I’ve ever felt challenged. This is AWESOME. and HARD. But I love it all the same. Through my education (as well as running), I continue to learn self-discipline and perseverance. Valuable life lessons, eh?
Well, that’s just a summary of what I’ve been thinking about lately and some of the different aspects of my life that I feel define me. What defines you? What makes you who you are? How do you learn and grow from these things?
In this yucky in-betweenish kind of weather my motivation to run spirals down the drain and gets all chopped up in the disposal. I can’t wait to run some races this year and really want to push myself to go farther and faster. In order to get to that point, I’ve got to put in the hard work. I don’t like hard work. But, it’s one those annoying life realities. So I dug out this old pic from Head for the Cure last year to remind myself that the work is worth it. If nothing else, the work is worth that calf muscle. BAM! 🙂 It’s the little things, right?
I think I need to post this picture on my mirror or something to remind myself what a badass I can be when I set my mind to it. This picture was taken at one of the highest points in my life. This was my second 5K and my second time proving to myself that I could do something I never thought possible. Due to a mild case of asthma and the ever-present endo pain, I never thought I could be a runner and consistently told myself that for years. This is where I proved myself wrong. And it felt AWESOME.
I hope you don’t think I sound boastful or vain, because that’s not what I’m going for. What I AM going for is some of that all-important positive self talk. If I encourage and believe in myself, I can do anything and nothing will stop me. I think that’s pretty valuable.
So here’s to motivation and goals and encouraging ourselves to be awesome. May you dream big and, more importantly, believe beyond a shadow of a doubt that your dreams can become your reality.
“Decide what to be, and go be it,”
— the Avett Brothers
I got my booty in gear today and ran a couple miles.
Hollaaaaaaaaaa! Look at me, keepin’ up with my goals and priorities. 🙂
So you know how I’m too much of a wimp to run outside in the winter, right? Thus, I ran at the community center today… on a treadmill. I’ve walked on treadmills before, but never ran. I was always (justifiably) afraid that my uncoordinated self would lose focus and fall off the back of the dang thing. But I mustered up some courage & balance today and tried it out. It wasn’t that bad! It was actually kind of fun, but weird because the whole time I was thinking “I’m not going anywhere! I’m running and I’m seriously not going anywhere!” I felt like it was easier to zone out though because I could just focus my eyes on one point and run, run, run.
I should note that I’m not just running for the sake of working out. I have an ulterior motive. Rumor has it that exercise might be able to help out endometriosis. Who knows, but I’m willing to try anything. (This is the same reason I eat sardines or herring at least once a week… something about omega oils…) So, fingers crossed, and hey – we all have our reasons for trying to be healthy right? Seriously, I don’t know many people who are in relatively good health who work out or eat well just for the heck of it. (Except my husband – he loves vegetables. Crazy.) It seems like there’s always a reason. Endo is mine. What’s yours?
Alright, well, time to go work on another priority: STUDYING!