Archive for category Pain

Continuing Ed

I’m supposed to be on a break from nursing school but I think I’m spending as much time as my former classmates in hospitals, in doctors’ offices, and researching online. It’s a lot of work trying to diagnose oneself!

I got a good kick in the butt recently to do as much as I can on my “down days,” research-wise, to ensure that I’m prepared for my final doctor’s appointment here and all the new appointments I’ll have in California. Right now my condition seems to be a mystery to everyone so I’m trying to find all the conditions that could possibly be causing/contributing to my pain. Additionally I’m researching all the doctors and/or pain clinics I might want to visit in California. I found this one that looks pretty comprehensive and promising. It’ll be a bit of a drive for me, but totally worth it as long as my insurance will cover it.

Also, I spent a good bit of time today going through the pain books I brought to the hotel with me, looking up the websites they recommended. It was time well spent as I was able to bookmark some great websites like these:

The American Chronic Pain Association

Chronic Babe

Healing Well

How to Cope with Chronic Pain

In other news I’ve got a big weekend ahead of me – I’m going to attempt to go to a women’s retreat. It will be a beautiful, rich time with some of my best friends and tons of lovely ladies. I’m very excited but also a little concerned about how much I will/won’t be able to do or how uncomfortable I will be. I know, I know… go with the flow and all that. 🙂 I’ll do my best.

Wishing you all a lovely weekend.

more to come…

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Letting Go

So you’re about to take a peek into what it’s like to live with chronic pain. It’ not always easy and optimistic – it’s often difficult and challenging and I’m going to share a little bit of this side of it. There. You’ve been warned.

One of the hardest things about living with chronic pain is the constant fluctuations. Sunday may be a good day that only requires two pain pills and allows me to get out and do a lot. You may see me at Walgreens walking around and looking normal. Tuesday may begin with sharp pains and significantly limit my activity. If you see me out and about, I’m parked in the handicap spot, shuffling and/or in a wheelchair. The continual ups and downs make it hard to plan or to have any kind of “normal.” I’m always trying to figure out what my normal is, analyzing every movement and meal to find the magic combination of activity and rest where I feel the best. Over the last week I thought I had finally found my normal. I felt pretty good for about four days in a row and I felt in control and free to do the things I wanted (within reason of course). And then I woke up today in more pain than “usual.” My whole normal was thrown off and I felt like I was back at the beginning, trying to analyze what happened and what I should do differently, if anything.

I’ve been seeing a counselor for the last few weeks in an effort to process all the things I am going through. With her help, I’m realizing that while continuing to try is a good thing (i.e. trying to get better, trying to find doctors who can help, trying to figure out what things help/hurt), my constant analyzing and quest for normalcy is just attempting to control my uncontrollable situation. I want a predictable life while I’m living with an unpredictable condition. She is encouraging me to just go with the flow and take each day as it comes. It’s ironic that I talk about that all the time and often blog about trying to “relax and enjoy the ride,” when that truly is one of the hardest things for me to do. I want to be in control; to plan and know what to expect. Going with the flow is a lot easier said than done.

Since I’m a planner, I’m now planning how to go with the flow. Sounds like a contradiction, right? But hey, it helps, so that’s what I’m going to do, dammit. 🙂 On my good days I’ll do everything I can (again, within reason) and on my bad days I will rest, research more doctors/pain clinics, plan fun things to do/see on my good days, look at magazines, do mind games/puzzles, knit, etc. I’m going to try to think of things I’d like to do this week instead of just this particular day, then do them when I can. For example, I need to go to the store this week so I’ll go on one of the good days instead of planning to go on a particular day and feeling bad if the day I planned to go ends up being a bad day. I won’t feel guilty if I can’t do as much as I would like. I will let go.

Thanks for reading some of my experiences. I hope it will help you understand what it’s like for people with any chronic pain or illness.

Here’s to letting go.

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Turning the Page

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 🙂

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Humbled

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. 🙂

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Living with Chronic Pain or The View from My Sofa

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.

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On Being Sick

“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?

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About that…

Yeah, so remember that “D word” that I wrote about yesterday? Death? Well, it claimed yet another yesterday.

My hospice patient.

Today I grieve a beautiful person and soul – a mother, friend, grandmother and nurse.

I knew it was going to happen soon, I just never expected it to be THIS soon. Ah, this has sparked so many thoughts and emotions. I’ve read book after book on death and dying, thought about how it applies to my own life and how I live it, but I never really thought about how it would affect me when one of my patient’s passed on. It’s difficult to write a narrative about something like this when I’m only thinking in bits and pieces. While this is fresh on my mind I thought I’d share of few of my mental fragments with you, I’m sure many of you can relate. So here we go…

I drove over to visit her today and it was when I was checking in with the nurses that I found out she had passed away yesterday – on the 2nd just before one in the afternoon. This was exactly the time I was trying to leave my house to go see her (but couldn’t because of my un-plowed street). If only I could’ve made it…

Just after I found out… denial: “Wow, I’m dealing with this really well… Well, I knew this was bound to happen… Just move on I guess…”

A little later: “Wow, I’m actually kind of sad about this… I really felt connected to this woman and loved every minute of caring for her. I just wish I would’ve been able to spend more time with her…”

Later yet: “She seemed to respond so well to me and she remembered me and was much more coherent on Monday… I mean she really seemed better and was so responsive! … I wonder if I would’ve been able to have more time with her if she would’ve still died…”

Anger sets in: “Dang you Son-in-Law for telling her it was OK for her to go, for telling her that you would take care of her babies, for reassuring her and comforting her with your love, and thanking her for giving you your wife! At the time you said it I celebrated your act of compassion and kindness but how could you do that? She would’ve hung on if you hadn’t…”

Transitioning to sadness: “Gosh, when she asked for water and I held up the sponge for her to drink from, I thought she was feeling stronger… remember when I was sitting there just talking to her, to let her know that I was there and that she was safe? Remember when I was just sitting there talking, hoping to comfort her and then she starting responding? Wasn’t that funny when she said…. And how cute was she when she was holding and stroking her stuffed plush puppy?”

“Oh how I enjoyed being with her and serving her, it felt so good to be there for her and for her daughter, who was clearly so appreciative…”

And then the tears came.

I grieve the loss of this beautiful woman who touched my heart in a matter of two long afternoons/evenings together. I celebrate the life of a woman who, as a nurse, touched countless lives. I grieve the loss of a mother, a grandmother, whose family will now be missing such a loved piece. I celebrate how much she meant to her loved ones, I celebrate that she could be near them when she passed…

but still, I grieve.

And I will for a few days. I will let myself grieve and remember the sweet, funny, difficult, and moving moments I was able to share with this precious soul. I’m thankful to the bottom of my heart that no matter how difficult this is, I was able to serve her while I could. I’m so thankful I made serving her a priority, even over my studies, because this is a lesson I will never forget.

So I will grieve. I will mourn. And I will celebrate. And then I will move on and carry this experience with me for the rest of my life as I care for more and more patients, and I will never forget the painful beauty of becoming attached to someone and letting them into your heart.

Sleep sweet, Miss P.

…more to come…

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