"Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms." ~1 Peter 4:10
Facing chronic illness head on, attempting to be honest with myself and others about it's effects on my life and finding ways to minister and serve despite the limitations of chronic pain.
"LORD my God, I called to you for help, and you healed me" ~Psalm 30:2 (NIV)
In the past 4 days I have felt like screaming....
The screaming pain......
Screaming because the pain is so intense and nothing is helping it go away. Not heat, not cold, not narcotics, not rubs, not creams....nothing. I feel like the only thing left to do is scream. Or is it the annoyance that I don't even know why my joints have flared up this time? Sure the weather is up and down, and my stress level is high, but nothing out of the ordinary. Why do I hurt?!
The scream of frustration.....
You kow those days when you can't do anything for yourself? Kind of like when you can't lift the milk out the refrigerator, or open the jar of spaghetti sauce to fix your family dinner. But the many faces of frustration could be a whole different post when you look at all the areas that chronic pain touches. The scream of frustration happens more than it should and a lot of times leaves me feeling like I'm somewhat out of control.
The scream of forced surrender (a.k.a. a pity party)......
You've been there. Don't deny it. It's the "I-can't-take-living-like-this-any-more" kind of scream. Maybe more likely referred to as a cry, a wail, a sob. It's the end of your rope pity party that anyone who deals daily with pain will eventually get to. There is very little that will help this emotional scream. I would recommend chocolate, hugs, Hallmark made for T.V. movies, puppies, and depending on your tastes maybe a glass of wine. I promise your mood will pass and you'll get your groove back, but it's okay to have these days. Don't dwell there, though.
The scream of ANGER.......
I'll admit, I want to scream a lot in anger. Anger at the disease, anger at the life changes I've had to make, but most of all......if there is one thing that REALLY makes me angry enough to scream it's ignorance.
(*I will make the disclaimer that I am not perfect and at times I say things that I shouldn't, but with God's grace, I am forgiven and continue to make every effort to look at all perspectives of a situation before opening my all too human mouth.)
I have very few people in my life that "get it". But that being said, even the ones that get it for the most part, have had moments where they judge my current situation or if I'm REALLY sick. I understand that it's difficult when I don't look sick. However, these people know me and choose to suppress the judgement in order to support me because they know my character.
My difficulty comes into play when I get the scowls from people because I'm parked in a handicapped spot at the grocery, or the whispering of co-workers because they can see an arthritis patch stuck to my back and peeking out from the collar of my shirt. If you don't know me, or have chosen NOT to get to know me, then you have no right to make the decision of how sick I am. You will never be able to see the level of pain, and I can guarantee you that every day I'm in pain. I make the choice to mask it and to try to be normal. Perhaps others should be judging me based on my strength to keep pushing instead of judging me on the days that I can't keep going.
I can only do so much to help educate my friends and family about RA and the effects it has on daily living. Do me a favor.....if you know someone dealing with chronic pain, find out why and care enough to do some research. I love But You Don't Look Sick that uses the "spoon theory" to help explain to friends and family and I also like The 60-second guide to RA from Rheumatoid Arthritis Guyas a fun way to discuss RA with my family.
How do you talk to friends and family about your disease?
Or do you not discuss it at all because it makes you want to SCREAM so much?
Okay....I'll admit it.....I'm a Pop Tart JUNKIE!! I have been closeted about my addiction for years, but when my mom showed up at my house this past weekend with this "limited edition" box of Pumpkin Pie Pop Tarts, I decided I needed to break my silence. But let me just tell you...there is a very good reason why they don't make these all the time. America would be even more morbidly obese than they are today. Everyone who loves Pumpkin Pie would be in heaven to be able to get it in such a convenient package and in only 5 minutes from the toaster.
I am a firm "toasted" Pop Tart eater...not microwaved or raw...toasted. So when I pulled these little babies out of the package and popped part of the crumbled crust in my mouth, I was not impressed. Just regular old Pop Tart crust. Bummer. My skepticism was mounting at what seemed to be an ideal breakfast treat.
Then, I discovered the filling and oh, what a joy. A burst of Thanksgiving joy dancing around my taste buds. All the cinnamon, clove, ginger, nutmeg pumpkin pie spicey goodness and sprinkles to boot. Sprinkles make everything good. I know I can't be the only one who believes in the power of sprinkles.
Final thought: Get a box. Get two or three. You may not be able to find them again for a long time, if ever. And you'll want them. Oh yes...you will want them, again.
Commitment is the enemy of resistance, for it is the serious promise to press on, to get up, no matter how many times you are knocked down. ~David McNally
If anyone has done a bible study or heard some teaching on spiritual gifts, you'll know what I mean when I say that I am spiritually gifted in hospitality. I have always loved having people in my home....small groups, friends, family, extra pets....you name it. In the past year or so, however, having flare up after flare up after flare of either fibromyalgia or rheumatoid arthritis has hindered my openness. Not so much my spirit of hospitality, but more of the ability to keep the commitments I make. Whether it's a grouchy attitude or pure exhaustion, I simply don't want company. Maybe it's more that I don't want anyone seeing how dreadfully dirty my unkempt house is thanks to chronic pain, either.
Along those same lines, I've lost my drive to go out, too. Let me rephrase that. I've lost my drive to go out past 5 o'clock in the evening. It's around supper time when my get up and go, got up and went most of the time. My husband and I have had long conversations about going to the movies in particular. I have 2 issues with movie theaters....1.) The steps. To get to the good seats, you have to climb a plethora of steps. 2.) The uncomfortable seats combined with the cold climate in the theater. Thus, my husband who LOVES going to see movies in the theater is having to go by himself more or with friends more often.
Both of these things make me incredibly crabby. I don't really consider myself to be a fuddy-duddy or boring by any stretch of the imagination. But these two things in particular make me feel old and like not much fun at all. So I found myself uttering those horrible words today, "I can't commit to that right now, but...." **sigh** Needless today, most days now, I just don't have the energy or the drive to press on and to get up no matter how many times I'm knocked down. I need to be awesome.
For lack of better wording.....I need to get my mojo back.
The past week leading up to National Invisible Illness Awareness week has been one of the most difficult for me since I was first diagnosed 5 years ago. Today was my first day out of my house in 10 days....you could say I am suffering from a bit of cabin fever on top of everything else.
My RA has been "active" for months now. I'm not even sure I realized that I was in a "flare" until it was basically too late to control. I smile to myself because up until last week, I hadn't realized the difference, even though I have always considered myself to be well-educated when it came to this disease. So either I am incredibly strong or significantly in denial as to the level at which my disease has progressed. I'm going with the latter of the two.
Without details, it basically comes down to the fact that I have gone through all of my basic options for treatment and am now moving into the treatment for "moderate to servere" rheumatoid arthritis. As I'm nodding in agreement at what my rheumatologist was telling me last week, in my head all I can hear is "WHAT?! Are you SURE?!" I came home talking to myself and telling myself that I'm fine and that I can still work.... I can still take care of my family....I can still...um...no, you're right......I am having trouble with those things.
And, of course, the reality of taking stronger, more expensive medications is also starting to sink in as I read about the side effects and the precautions that you need to take and what you may be susceptible to, all along while paying anywhere from $150.00 to $1000.00 a month (depending on if I've met my deductible or not....geesh....). Seems like a high price to pay to get tuberculosis or even to get every virus that I come in contact with for that matter.
So, I'm still contemplating my choices while recovering from some sickness and trying to manage the pain of which is inevitably a flare at this point.
How much of a learning curve do I get for stubbornness again?
There are a few things that have brought me down a few steps this week, one of them being shopping. I used to love shopping, few women don't. However, I find the variety of shoes that a fashionista with rheumatoid arthritis has to choose from has dwindled, even more than before. Maybe it's my budget is too small, but I can't bring myself to pay big bucks for shoes, even if they are the most comfortable pair this side of the Mississippi. The other area of shopping that has me completely beside myself is bra shopping. As if bras weren't uncomfortable enough, combine that with a back that's riddled with fibromyalgia pain and the choices evaporate altogether. My husband and I went shopping Saturday and I couldn't even look to see if there were things I liked because my shoulders hurt so bad from holding my arms up for more than 10 seconds.
Secondly.....who likes to smell like a pharmacy?! Don't get me wrong, I have days where I love....I mean, LOVE.....my Tylenol Precise or the new Ben Gay Cooling gel. I am hot by nature (smokin' hot, honestly), so the cooling gel is awesome because it doesn't make me feel really hot. And, for the most part, they work. Albeit temporarily, they still work long enough for me to get a nap in sometimes....but that brings me to the third point......
"It is not only the old who are wise, not only the aged who understand what is right." ~Job 32:9
I'm only 33. Wait, scratch that....I'm 32 until Wednesday,. Yep. That's it. I know that sometimes reading my posts probably makes it seem like I'm a lot older, and believe me most days I FEEL old. I feel really old. Like I need to retire from my 40 hours a week kind of old sometimes. I like to think that in my 33 years, the past 5 especially, have made me a "wiser" person. Not as in wise-cracky, but educated. I have spent hour, upon hour, looking for answers regarding my illnesses and desperately trying to connect with people that understand and just "get it" without me having to explain why I feel the way that I do. I have found great camaraderie from people both online and in the small group that I lead through my church.
Camaraderie: n. : a spirit of friendly good-fellowship
So as I turn another year older, I can laugh about my Ben Gay, I can complain that there are no cute shoes, and I can cry with the few girls I know that will truly understand why finding a bra is so defeating and so difficult. The Lord has absolutely blessed me in the face of great opposition....so much so, that I can't help but find myself going back to the scripture that first started me on this blog journey....
"Be generous with the different things God gave you, passing them around so all get in on it: if words, let it be God's words; if help, let it be God's hearty help." ~1 Peter 4:10 (The Message)
Even disease, as much of a disability as it may be, is a gift from God if it's used in the right capacity. Thank you, Lord. You have blessed me more than even I'm aware sometimes.
I've tried for the past 2 days to find new, comfortable cute shoes.....and I must say, it's so frustrating I'm worried about having a flare up just over the stress of shoe shopping....
I do my research, but it's the availability of the products that frustrates me. Does anyone else get frustrated when they just want to feel normal and not like a sick person, but it seems there is no way around it?
It may be hard for an egg to turn into a bird: it would be a jolly sight harder for it to learn to fly while remaining an egg. We are like eggs at present. And you cannot go on indefinitely being just an ordinary, decent egg. We must be hatched or go bad. ~C. S. Lewis
“Come to me, all you who are weary and burdened, and I will give you rest." (Matthew 11:28, NIV)
Being the mother of two super busy boys isn't an easy job. Throw on some pain, fatigue, the discouragement of chronic illness, a 40-hour-a-week job, a husband, 3 dogs, a cat, grocery shopping, checkbook balancing, bill paying, small group leading, friends, family.....am I forgetting anything?
Is it any wonder that I'm feeling overwhelmed? There are days that I can't even bring myself to fix dinner. My children have adjusted well to random hot dog or chicken nugget nights. Not that I've adjusted to the guilt I feel when I resolve to fixing those kind of dinners. I'm in the midst of baseball season for both children and extreme weather changes where 8 hours of sleep each night just doesn't seem to be enough to cut the fatigue or allow my body enough time to recuperate. Days when I only have the strength and energy to roll over and dial the phone to let them know I won't be to work that day. Days when I may be able to wash my hair, but not have the gusto to comb it.
"Return to your rest, my soul, for the LORD has been good to you." (Psalm 116:7, NIV)
It's in the quiet....sometimes in the shower, sometimes in the car, sometimes in a concsious effort to find the quiet....but it's there that I hear the still small voice reminding me that my rest is in Him. He reminds me that it's this world that is condemning me for not fitting into their mold, not Him. He has never pointed His finger at me or told me that I wasn't doing well enough or good enough. Quite the contrary, it's Him who applauds me at the end of every day when I've done my very best to just get through the day. It's when I am at my weakest that it can be seen how very strong He is.
"Although handicapped is widely used in both law and everyday speech to refer to people having physical or mental disabilities, those described by the word tend to prefer the expressions disabled or people with disabilities. Handicapped, a somewhat euphemistic term, may imply a helplessness that is not suggested by the more forthright disabled. It is also felt that some stigma may attach to the word handicapped because of its origin in the phrase hand in cap, actually derived from a game of chance but sometimes mistakenly believed to involve the image of a beggar." ~Usage note listed with the definition of handicapped on Yourdictionary.com
So, this was the weekend. The weekend that I broke down and visited my local BMV to pick up my handicapped placards for my car. I'm still not happy about it, but my husband is now insistant that I have them in both of our vehicles and USE THEM. I keep choking each time I attempt to swallow my pride on the subject. I understand my husband's concern for my safety, especially with the disease as out of control as it is right now, but I'm having trouble considering myself as handicapped. I know that some of it is pride, but there's another part of it that just has me dumbstruck and asking....."am I REALLY handicapped?"
hand·i·capped (hănˈdē-kăptˌ)adj. Physically or mentally disabled. dis·a·bled (dĭs-āˈbəld) adj not in proper working order; out of commission:
Yep.....I guess so.
I like the definition "not in proper working order." It makes me smile, because that is the best way I have heard myself described. I am, indeed, not in proper working order, especially compared to what I used to be. I am working, and I am able, but perhaps not 100%. Kind of like a car that has a squeaky belt or a coffee pot that continues to leak. You can still get some use out of it, but maybe not the exact results that you are accustom to. That's me alright.
"Out of commission"? Yep, that's sometimes me as well. When my body, which is not in proper working order, has a tendency to poop out altogether. The day after overexertion or too much travel can all be days when I may consider myself "out of commission." Don't call me, don't Facebook me, don't text me. I'm grumpy and "out of commission". These are the days when my body is placed in the impound lot and waiting for someone to pay the fine for me. More specifically, I'm laying in bed waiting for my meds to do their job.
Okay, so I admit it....perhaps handicapped is the correct term. Question is, how do I change my attitude so that I can be positive about being labeled as such? I know I've referenced it before, but I keep coming back to this passage in The Message:
"Because of the extravagance of those revelations, and so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it's all you need. My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become." ~2 Corinthians 12:7
"A woman whose smile is open and whose expression is glad has a kind of beauty no matter what she wears" ~Anne Roiphe
"Flowers... are a proud assertion that a ray of beauty outvalues all the utilities of the world." ~Ralph Waldo Emerson
"Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams." ~Ashley Smith
"Shhhh......You're so beautiful when you don't talk....." ~my loving husband, Chris
"Expect the best, plan for the worst, and prepare to be surprised." ~Denis Waitley
Thanks to being off my medicine for a week, lots of rain with up and down temperatures and then starting new medicine this past Monday evening, it's been a super long week. And, of course as usual, after I was spiritually lit on fire after last Sunday's sermon on an effective prayer life, it kind of all feels like the enemy pouncing on me with both feet. Holding my head under water. You know the feeling I'm talking about, right?
So, how do I prepare for this week then? There is a cold front moving through Ohio today, which makes my fibromyalgia angry and tonight I'm required to double the dose of the medication that I started last week. Knowing how I felt last week, how do I prepare for this week. First things first.....ask for help.
Managing your disease includes managing your attitude regarding your disease. After a long conversation with a wonderful friend, I broke down and asked for help. The first kind of help that I asked for was prayer. A few friends who would commit to praying for my physical, emotional and spiritual needs. Thanks to technology and social networking, my prayer circle includes friends who live a good distance out of town. I figured that way, my prayer help is coming from people that I won't be calling on to help with physical tasks.
The second kind of help is more difficult for me. I asked a couple of friends to help provide a meal this week. I know that my new medicine is going to make me sick for a couple of days again after I double the dose. I need to make sure that my kids are fed, especially if I have sunk all my energy into an 8 hour work day. Chris will return home from Haiti, (for good), late Tuesday night. So I asked for someone to provide dinner on Tuesday evening. I remember hearing a sermon at one time that reminded me that sometimes NOT asking for help is robbing someone of the blessing of serving. I'm trying to keep that idea in the front of my mind when I'm being too prideful to ask for anything.
Lastly, making a space that's completely dedicated to meeting with God. "Here's what I want you to do: Find a quiet, secluded place so you won't be tempted to role-play before God. Just be there as simply and honestly as you can manage. The focus will shift from you to God, and you will begin to sense his grace." ~Matthew 6:6
This is my space. It's quiet. It's surrounded by dirty laundry, and the cat litter box, an old refrigerator, and Christmas decorations. And it's been absolutely perfect. The greatest preparations I can make for being sick is taking it to God. "Because of the extravagance of those revelations, and so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it's all you need. My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become." ~2 Corinthians 12:7
So, if being sick allows the strength and glory of God to shine through me.....then bring it on.
"I think it's important that we don't all have to hold our heads high all the time saying everything's fine." ~Nicole Kidman
I'm a regular at the Tim Horton's drive-thru. I admit it. It's my addiction, even if it's gone from regular to decaf. It's the habit and the comfort of the cup of coffee each morning more than the caffiene. Here is the exchange of words each time I'm at the window, usually with the same girl:
Girl: "Good morning! How are you?"
Me: "Good, thank you."
This morning it occurred to me that I'm not "good". Why do we, as a society, more realistically those of us with chronic illness, have such an aversion to admitting that we are not doing "fine" or "good"?
I think it's a habit that gets instilled in us from a very young age. It's a matter of being polite, but it's not real. It's a very masked response for many people. However, the question itself is a very fake form of concern. If only people really DID want to know how I am everytime they asked. I'm sure most of them don't though. I'm sure that most people, especially those in customer service, are simply attempting to be cordial and provide a pleasant experience at that given moment.
In a more realistic world, the girl at the window wouldn't even ask me how I'm doing because quite frankly, she doesn't really care how I'm doing. I'm just the lady that comes through every morning at 6:10 a.m. and buys a large coffee with 3 sugar and 2 cream. Though she recognizes my car and can have that coffee ready before I even get to the speaker, she really doesn't concern herself much with "how I'm doing".
Of course, a more "real" version of my response probably would have looked more like this:
Girl: "Good morning! How are you?"
Me: "Oh, I'm up and moving, which is a considerable acheivement this morning considering I can't bend over or put on a pair of jeans due to the pain in my back and legs. And I can't put on my regular shoes because my feet are too swollen. I skipped a shower all together because I didn't have enough energy, so I just stuck my head under the water to fix my hair. But then again, it took me twice as long to blow dry my hair because I can't bend down and hold my neck for very long and I can't hold my arms up for very long thanks to the inflammation in my shoulders. My eyes burn, so I can't put in my contacts and I just remembered that I forgot to pack myself a lunch. Darn it. Oh well, I didn't have time anyway if I wanted to make it to work on time."
And that, my friends, is the reason that no one answers honestly, because nobody really wants to hear that kind of long-winded response. I can't say I blame them.
However, the next time you see a friend, acquaintance, co-worker, or family member, before you ask "How are you?", ask yourself...."Do I really mean that, do I really want to know?" At the same time, when they answer "fine" or "good", remember that there's more to everyone's story, it's just a matter if you're taking the time to really listen. And if you choose to really listen, remember that whatever is going on in their lives is real to them, and care that their circumstances are making and molding them into the people they are today.