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 …

Invisible Disabilities

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…

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…

On Healing

Yesterday, my friend Sarah and I headed down to the Fremont neighborhood in Seattle to check out the Sunday Street Market (awesome, with tons of vintage finds!), the troll under the bridge, and 9 million in Unmarked Bills (besides the sweet name, great vintage cocktails and healthy/vegetarian friendly menu). We also took a tour of the Theo chocolate factory (fair trade, organic, and delish!) and went to Gasworks Park to check out the neat, gritty, industrial equipment along with great views of the city.

Anyway, while we were at the street market, a random guy came up to me and asked if he could pray for me. I’ll never turn down a prayer, so of course I welcomed him to do so. This is not the first time I’ve been prayed for by random people who have seen me in a wheelchair, but this time it got me thinking. I believe God has the power to heal me (and anyone else for that matter), but I don’t know why he hasn’t chosen to do so yet. I started wondering if I just haven’t been believing enough in God’s healing power, or if He just has some greater purpose for this that I may or may not ever be able to understand. The three years I’ve been dealing with this pain has felt like forever, but I know it’s just a fraction of what some people have suffered. I guess I’m just struggling a little with faith and questioning whether I have enough. I know that sounds a little silly. All I can do is cry, “Lord I believe, help my unbelief!” and trust in the Lord that all things work together for the good of His followers and that He has this all under control. I believe in the healing power of the Holy Spirit and trust that one day, in this life or the next, at the perfect time, God will restore my body and I will run and jump and celebrate my wholeness.

Do you pray for healing for yourself or a loved one? What do you ask for? How do you deal when your prayers seem to go unanswered?

…more to come…

But you don’t LOOK sick

If I’ve heard this one once I’ve heard it a million times. And I know many of you have as well as there is a blog, a book (I just pre-ordered the new edition!),  and even YouTube videos with the same title, devoted to those suffering from “invisible illnesses.”

I honestly don’t know what people are thinking when they say this… Do they think it’s a compliment? That we’re faking it? Do they just not know what else to say? It’s probably a combination of all of these along with a big dose of being uncomfortable around people with a condition they can’t understand.

If you’ve ever said these words to someone, don’t feel bad. We’ve heard it a million times and don’t blame you for not knowing what to say. However in the future here are some suggestions: You can try asking questions about the person’s illness to help you understand what is going on with them. You could ask if they want to talk about it. You can ask if there’s anything you can do. Or sometimes all the person needs is a friend/family member to treat them like a normal person.

I know a lot of times I just don’t even want to talk about my problems since I live with them every single day. Most times I just want my friends and family to ignore any noises or faces I may make when I’m in pain, ask if I need anything, and move on. The thing that I – and I think most people with chronic issues – long for is to be/feel normal and to be treated as such.

I think the key here is communication (isn’t it always?). We all just have to talk to each other. It is essential for those of us with chronic pain or illness to let our family members and friends know what we want and need from them. And it’s just as important for you family and friends to tell us what you’re thinking and feeling. If you’re struggling with our issues, tell us. If you’re confused, ask us questions. Don’t be afraid to talk about it, otherwise there’s this huge pain-shaped elephant in the room that just makes everyone uncomfortable.

So the moral of the story is: TALK! And never tell anyone that they don’t look sick. 🙂

…more to come…