On Acceptance

During and after reading You Don’t Look Sick (see review below), I did a lot of thinking and reflecting on how I had been dealing with living in chronic pain. The book breaks living with chronic illness into four phases: Getting Sick, Being Sick, Grief and Acceptance, and Living Well. As I was reading, I was pretty sure I had already dealt with all the grief, accepted my situation, and moved on to the task of learning how to live well. The more I read however, I realized I was still stuck in the Grief and Acceptance phase. Thinking back over the last six months, I saw how I had gone back and forth between grief and acceptance multiple times. I would make some headway towards acceptance, then have a really bad doctor’s appointment or a huge pain flare and I would swing right back to grieving who I was and who I may never be.

For example, in December I went to several appointments in one week where I kept hearing the same thing: The prognosis is not good, we don’t know what is causing this, we may never know, and you are probably going to have to deal with this the rest of your life. Even though, deep down, I already knew all of this, it felt like a blow to my heart. I didn’t realize how much I was clinging to who I used to be. I was still imagining myself as a fit young woman full of energy and productivity trapped in a broken, painful body. I wasn’t accepting the body and life I currently have, so I wasn’t able to fully live well within my limits.

Basically I felt like a broken version of my old self and, in turn, was rejecting the person I had become. I felt that somehow I was less than whole, a fraction of who I used to be. It wasn’t until I was reading about acceptance that I realized how messed up my thinking was. I’m NOT broken. I am whole person. I’m just different than I used to be (which, by the way, is actually a really good thing). I’m smarter (I’ve learned a ton about pain and the medical field), I’ve experienced deep and wonderful friendships, my faith is stronger, I can empathize and relate to many more people, and I appreciate all the little things and blessings in my life so much more than I ever did before. Having been forced to slow down, I have also been forced to learn how to live in, and appreciate, the still and quiet moments that come with having to rest and stay at home a lot.

As all these revelations became clear in my mind I felt so much more at peace with myself and my situation. I felt… acceptance. Mind you, this didn’t happen overnight. I thought about all this over the course of several weeks. But, let me tell you, being in a place of acceptance and peace is so much sweeter, and easier, than fighting through grief. This isn’t to say I’m never going to grieve again. I’m sure there will be hard times in the future, but I will be able to look at the lessons I’ve learned and remember how much better it feels to accept. For now though, I’m just looking forward to moving on to the next phase: Living Well.

…more to come…

We all battle through grief and acceptance through life in all kinds of situations. What realizations brought you out of grief to a place of acceptance? Did a person or book help show you the way?

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You Don’t Look Sick – the book

Hello, friends. Today, I want to review a book I mentioned some time ago called You Don’t Look Sick (the new edition). I excitedly pre-ordered my copy last year and it arrived just after its release date the beginning of this month. As I read through this great guide to illness I found so many explanations of thoughts and feelings I hadn’t previously been able to put into words regarding the nature of chronic illness and its effects.

The book is written by Joy H. Selak and Steven S. Overman, MD – a patient and her doctor. Having both views represented in the same book is invaluable. One can not only empathize with Joy, the patient, but can gain beneficial insight into the thought process of doctors and great tips on how to navigate the medical world by one of its own. After reading this great reference I feel so much more at peace living with chronic illness. I think a lot of that is due to how Selak and Overman break up chronic illness into phases that one experiences, then explain and advise the reader on how to navigate each stage. The phases are Getting Sick, Being Sick, Grief and Acceptance, and Living Well.

Selak illustrates her own experiences of living through each phase with multiple chronic issues, and explains how she continues to cope and live well despite her illness. Alternatively, Dr. Overman discusses how he helps his patients through each phase, offers tips on how patients can maximize their experiences with their doctors, and explains how to build a team of medical professionals to get the most out of one’s treatment.

I cannot recommend this book enough to those who are currently living with chronic illness as well as the friends and family of the chronically ill. It is my new favorite resource and I am sure I’ll reference it many times to come.

That’s all for today folks. I’ll be back tomorrow with my reflections and lessons learned from this book. It has really changed how I look at myself and my situation, allowing me to experience much more acceptance and peace. It is so refreshing.

…more to come…

Do you have a favorite book or reference that has helped you through a difficult time? What lessons did you learn?

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When it Gets Weird

If you’re friends with me on Facebook then you saw my recent post about coming up from underground. I’ve been out of commission for the past several months and I’ve finally emerged from my hibernation. I know you were probably going through Mel withdrawal, but I promise, it’ll be ok. I’m here now. Shhhh.

I was trying to explain to my pal Krista last night just why exactly I was hiding out. It’s complicated but I think I was trying to focus all my attention on myself, on the steps I needed to take to find wellness and healing, and dealing with the difficulties of all that entails. My husband was away on business so I was by myself trying to figure out how to live a physically hindered life on my own. Although I had massive amounts of help from my mom (who flew out here for several weeks) and my friends I just couldn’t muster the energy to get online, to put myself out there, to reveal what’s going on, to share my story, etc. I just couldn’t deal with it.

It wasn’t till later when I was talking to the hubs (who’s home now), that I realized I think one of the roots of all this is the stark contrast I see between myself and him and so many others who have their health and are so capable of living life to the fullest and doing everything they want to do. In them, I see my old self. I see things I used to love doing and I know how it used to feel to do those things. I also know how it feels now, when many of those activities are no longer feasible.

And it’s weird. It just is. I see all my old nursing friends’ posts about finishing up finals and preparing to graduate and my heart just breaks. I’m so proud of and impressed with them and in some ways I live vicariously through them but … I just think about how that could’ve been me. If God just allowed me to be well, if I just had the strength, if, if, if.

I know I’m just playing the coulda woulda shoulda game and we all know how pointless that is, but sometimes one can’t help things crossing their mind..

So here I am. In this weird, painful place knowing that it’s up to me to choose how this is gonna go. The question becomes how do I deal with this? I think it’s OK to feel a little self-pity and acknowledge the difficulty of where I’m at, but then what? Am I going to stay in this place and allow myself to keep going down this path? Or am I going to get my ass of the couch, put a good jam on the record player, and choose happiness? 

Don’t get me wrong, I see my blessings. I KNOW just how undeniably amazing the people are in my life and I am SO thankful for them. My motto is “Never Give Up” and of course I’ll hold to that. I’ll never stop searching, trying, researching, going, going, going… But. That doesn’t change the fact that sometimes things are harder than others. Sometimes things are weird. 

Over the last month or so I’ve been trying to make a point do some of the old things I loved in an adapted way. My buddy Cassie recently pushed me in my wheelchair all over some accessible trails in one of the state parks over here, and she even helped me cook an amazing meal. I’ve been making a point to put on a nice outfit every day and spend the time on my appearance that I used to. Not only do I then feel great, I look fabulous which helps narrow the gap I see between myself and others as far as appearances go. So what if I have a cane/walker/chair, I look better than you. 😉

And, now that I think about it, that’s probably one of the best ways to overcome the weird. To keep doing the things I love. To make them possible in one way or another. Additionally, I think it’s important to find new things to love. New hobbies or activities that are possible and enjoyable and stimulating to the mind and body.

I write this knowing how easy it is to type words and the difficulties of actually living out what I’ve said. There will be days that are still hard and I’m sure I’ll still get frustrated and annoyed and even jealous when I see what I can’t do but I also know I gotta keep trying. I don’t have a choice. I mean, I guess I could just sit around and eat cookies all day, but that’s not living. If I want to live, and live well, I have to keep going, keep trying, keep making the effort. It may be twice as hard for me as it is for others, but maybe that means it’ll be twice as worth it too…

I’m still trying to figure it all out, but in the meantime I’ll leave you with some words from No Doubt’s Settle Down:

I’m fine (and nothing’s gonna knock this girl down)
I’m hella positive for real
I’m all good
No I’m fine (and nothing’s gonna knock this girl down)
It’s kind of complicated that’s for sure”

Amen.

What do YOU do when it gets weird? How do you get out the “weird funk”?

… more to come …

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On Help

My pain has been taking me on a pretty wild ride the last few weeks and it’s been hard to even sit with the computer on my lap. I’m sure you’ll forgive my lack of posting. 🙂

I wanted to write a little more on the topic of help – admitting you need it, actually asking for it, and saying yes when people offer it. All of these things are SO hard to do, sure, but by accepting help, you will feel blessed and unbelievably grateful, and the people that assist you will feel so glad that they were able to do something for you. When people are sick or in pain, the healthy people that love you really want to do something for you because they hate seeing you sick and wish they could do something.

I’m saying all this from experience. I finally broke down about a month ago and realized I really can’t do everything for myself. It was a big step for me as I LOVE to feel in control and independent and “not weak.” Anyway, I realized by not asking for or accepting help, I was becoming miserable, barely able to accomplish necessary daily tasks, much less do anything beyond that, all so I could feel “independent.” So, I called my sweet Momma (who was more than willing to fly halfway across the country) and asked her to help me with those daily tasks and essentially become my caregiver for a while. I also started accepting help. My neighbors offered to stop by whenever they go to the grocery store and ask if I need anything. How sweet is that?! I said yes. My dear lady friends at church have brought me meals, driven me to doctors appointments hours away, picked me up for Bible study and just given me so much love. It has become clear to me that there are many people who are willing and want to help. I also found out that in receiving help I feel more strong and independent. How weird is that?!

So, you see, I have been extremely, undeniably blessed, just by saying six words: “Can you help me?” and “Yes, please!” 🙂 The ones who have assisted me have also felt a sense of fulfillment in knowing they have helped someone and knowing that I might feel better in some way from their contributions. It’s really a win-win.

I hope this will inspire you to start asking for help, or to start offering it. It truly is a blessing for both parties.

…more to come…

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Invisible Diabilities

Hello dear readers! I’m back!! I received a series of six ultrasound-guided nerve blocks on Monday, so hopefully the steroids will be kicking in soon. Today I feel like I might be getting a little relief. Yay! 🙂

My mom recently found an amazing website: the Invisible Disabilities Association. It is an amazing group, founded by Wayne Connell, the husband of Sherri, who lives with chronic illness. This husband and wife team has created an amazing group dedicated to educating friends and family about invisible disabilities and providing a safe place with lots of useful, helpful information for those who live with these disabilities.

For Invisible Illness Week, Wayne and Sherri were interviewed by Lisa Copen (the author of many great books on chronic illness) for an informative seminar/video. I wanted to share this video with all of you as it is wonderful and would be helpful to anyone who lives with or knows someone with chronic illness and those who suffer as well. It spoke to my soul. Here’s the link: http://invisibleillnessweek.com/2012/09/10/what-to-say/. It’s 40 minutes long, but well worth taking the time to watch.

Wayne and Sherri have also written an amazing little guidebook called “But You LOOK Good”: How to Encourage and Understand People Living with Illness and Pain. I was nodding my head in agreement through all 50 pages! It’s a quick read, but so helpful.

I hope you, too, can get some encouragement from this association, the seminar, and/or the booklet. Do check it out!

…more to come…

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Be Back Soon

The last couple days I have been experiencing pain levels that are making blogging difficult. I wanted to apologize for not being around and let you know that I’ll be back up to my usual blogging just as soon as I can get this pain spike calmed down, hopefully really soon.
In the meantime, remember: NEVER GIVE UP!

…more to come…

Do What You Love

I was watching Julie & Julia tonight (again) and it got me thinking. I actually used to be a baker and a passionate cook, always hosting dinner parties and the like. I still LOVE cooking but just can’t tolerate the grocery shopping or standing up in the kitchen for any length of time. I’ve basically given up cooking for these reasons, barely doing anything besides making smoothies, heating frozen food, getting takeout, or making very simple and quick meals.

 

Anyway, I think it’s a shame that I’ve given up doing something I love. Like I mentioned earlier, it’s so important to do things that bring us joy. So I’ve been trying to figure out how I can manage cooking with my disabilities. I already keep a barstool in the kitchen which helps, but I think it’s time to enlist the help of my loved ones. My mom is coming soon and I think I’m going to pick out some recipes and have her help me get the ingredients and cook the dishes. We did a little cooking together when I visited my folks a while back and I had a blast. So what if I’m not doing it all myself. I want to cook dammit! 🙂

What kinds of things do you/did you love that you have stopped doing? Can you find a way to do it again?

…more to come…

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The Intouchables

Today on The Talk the hosts were chatting with Francois Cluzet who recently starred along with Omar Sky in the movie The Intouchables. I want to see this movie so bad. It’s based on a true story about a wealthy French businessman who, after his wife passes away, gets in a tragic accident and finds an unlikely caretaker in a former con-man. The wealthy man, now a quadriplegic, wanted to hire someone who would show him “no pity” and finds that quality in Omar Sky’s character. The two develop an unexpected, but incredible bond.

The two men on whom the film is based have written their own books, A Second Wind, and You Changed My Life, about their lives and their experiences together. Since I’m not sure when I’ll be able to get out to the theater to see the movie, I just ordered both of the books and can’t wait to read them and be inspired.

I’m so excited about the film (which won 7 awards and was nominated for 9 others) and these books. I think it’s wonderful that, like Push Girls, a disabled person and his experiences are being revealed so that more and more people can see what it is like to live with handicaps. I’m also so glad that the relationship between a disabled person and his caretaker is being showcased. This relationship is such a precious one in so many people’s lives, whether the caretaker is a spouse, family member, friend, nurse at a care facility, or employee as in the movie. The role of caretaker is difficult, rewarding, and challenging on so many levels and I know it’s a job not everyone is capable of doing.

I’ve been SO incredibly blessed by my husband who has been an amazing caretaker. He is the perfect balance of giving me all the help I need while treating me as normal as possible and getting me out of the house for little adventures. I’ve watched him pick up the slack as our roles have slowly reversed from me taking care of the house and him, to him taking care of everything. He never complains and his attitude is always positive. In fact, the only time he gets down is when I’m down and having a hard time with my situation. Besides J, my mom has also had to care of me while J has been extra busy or away with work. She, too, has been completely unselfish and shown me so much love in how she has met my needs, making sure I have a healthy diet, keeping my house clean, and best of all, being a fun companion, helping me stay positive.

I can’t speak for what it’s like to be a caretaker, I can only say how blessed I am to have such great ones in my life. So here’s to all the caretakers out there, making our disabled lives easier, better, and happier. We thank you from the bottom of our hearts.

…more to come…

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On Side Effects

I could probably write a book about the joys (sarcasm) of side effects. Anyone who’s experienced any illness for longer than six months could probably do the same. You just can’t avoid trying different drug therapies (and natural therapies, and diet therapies, and… you get the picture). While prescription drugs can do wonders for us (believe me, I couldn’t get by without a couple of mine), they can also wreck havoc on our poor bodies that are trying to metabolize them and deal with the changes they create in our bodies or brains.

In fact, the reason my posts have been a little short and sweet lately is my doctors up at Stanford recently increased one of my drugs, so I have been extremely out of it since I got back from Seattle. It’s a drug that acts in the brain to “chill out” the crazy pain messages my nerves are sending. It’s been the only thing that has helped me even a little lately so of course we want to try to increase it and see if it helps more. However, with all drugs that act on the brain, it takes a while for the brain to get “used to it” so in the meantime I am like a zombie. The side effects of this one are a little rough. I get so dizzy and SO tired that the last few days I’ve literally slept all night, woken up, and gone back to sleep for half the day. Makes it hard to get stuff done. Yesterday’s post took me a good hour or two as I just couldn’t focus my eyes or brain. Today is a little bit better, but I’m still incredibly sleepy even as I type this.

But, this is the price we pay to keep hoping. To keep fighting. To keep trying, trying anything they throw at us to see if it’ll help. I’ve heeded the advice of doctors, family, friends, colleagues, acquaintances, etc. I’ve tried so many things. I even went on a shot last summer that put me in medical menopause. Luckily I didn’t get half the side effects I know some girls have experienced, but I still get the hot flashes. My older female friends think it’s hilarious that I get hot flashes like they do even though I’m only 27. The latest treatment before this new drug is actually kind of funny. The doc had this special capsaicin cream made for me at a pharmacy that was 10 times stronger than you can buy at the store. FYI capsaicin is the ingredient that makes hot peppers spicy. I was slathering this stuff on my belly every freakin night for a good month (with a glove mind you, so it wouldn’t burn my hand) and it didn’t even help! All it did was make my belly feel like it was on FIRE. 🙂 Ah, sometimes you just have to laugh right? As my friend Sarah said, you gotta laugh to keep from cryin’.

For a real good laugh, here’s a link to the “Vitameatavegamin” commercial from I Love Lucy. Lucille Ball sure does experience some side effects in this one! http://www.youtube.com/watch?v=m-wErh2qp2o Enjoy!

What are the strangest side effects you’ve experienced?

…more to come…

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Sometimes You Can’t Make it on Your Own

Remember that old U2 song? It’s actually one of my faves.

Tough, you think you’ve got the stuff
You’re telling me and anyone
You’re hard enough

You don’t have to put up a fight
You don’t have to always be right
Let me take some of the punches
For you tonight

Listen to me now
I need to let you know
You don’t have to go it alone

Aren’t those lyrics great? After about a week of trying to take care of myself I’m finally admitting that I actually need help and realizing that I really don’t have to “go it alone.” I mean, I want to. I really want to. More than anything in the world I want to be independent and normal and whole and capable, but I can’t keep denying that I’m just not able to be those things right now. I need help. I need a caretaker, as painful as that is to say. So I called my sweet Momma who was just waiting for the call she already knew was coming. As much as I hate to admit I need the help, I’m so lucky to have a mother who’s willing to fly halfway across the country for me.

On Sunday I was talking to a lady at my church (who has battled cancer twice) who said as hard as it is to accept help, we have to. Because the people who take care of us need it just as much as we do. Interesting idea, huh?  I never thought that the caretakers might need the experience as much as the people being cared for. That we all might have lessons to learn from this, as painful as it may seem.

Have you ever had to ask for or offer help? What did you learn from the experience?

…more to come…

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