I am not afraid of death. While the act of dying does seem daunting, death itself does not scare me. I know many people who are terrified to die, but I’m not one of them. Don’t get me wrong, I love my life and am grateful for the many blessings God has bestowed upon me. However, life with chronic pain hurts not only physically but mentally and emotionally. It’s a very hard road and the thought of being in heaven where there is no pain or tears sounds delightful to me.

Luke 6:21 - “God blesses you who weep now, for the time will come when you will laugh with joy.”

It’s hard to picture life without the intense, throbbing pain in my knee or life without tears to remind you of the emotional pain lying within. But when I picture heaven, I see myself laughing a lot, praising God for the new lease on life, and running around — maybe even skipping — treasuring my healthy “body.” As much as the thought of life after death can boggle the mind, I get excited thinking about that day when I can run again and I don’t feel that pain.

Funerals are typically sad. You mourn the loss of a family member or friend and wonder what life would be like if he or she was still there. You think about the things you wanted to  say, but never did. You regret the things you did say, but wish you had never said.

While at my cousin’s visitation, my mom pulled my brothers and I aside and said that she didn’t want something sad like this. If she went home to be with our Father, she wanted us to celebrate her life on earth and the fact that we would soon see her again in a much better place. She wanted us to play songs like Celebrate and Shania Twain music. It reminded me of the time that I had attended my high school friend’s grandmother’s visitation. No tears were seen as the group of people celebrated and honored her time with them and they recounted the many great memories they had of this incredible woman.

Every death is tragic and sad, but I hope that whenever it is my time to leave, people will see it as a time to celebrate my life. I want people to picture me laughing and running around for the first time since 2003 and know that while I miss them all, I am much happier in heaven where I’m not hurting or crying.

I understand that my family and friends will likely be sad about my death, whenever it may happen. But I sincerely do want my visitation and funeral to be a celebratory event. I want people to celebrate my arrival in heaven — that I’m no longer in pain and with my Maker. I want bright colors — hot pink, turquoise, white, etc. — adorning the room. I want upbeat music played during the visitation — maybe even a funky techno mix — that will help create the desired mood in the room. I want pictures with me and my family and friends.

I want my favorite verse prominently displayed: “My health may fail, and my spirit may grow weak, but God remains the strength of my heart.” [Psalms 73:26] I want the pastor speaking at my funeral to use it as an opportunity to witness to those who are not yet Christians in the audience. I want those in attendance to know why I smiled so much and why I was filled with joy in spite of the daily pain and suffering. I’m not the type of person who will go up to people and start talking about Jesus. I prefer to witness through my actions, but I want my funeral to finally be the place where it is made clear, once and for all, why I was so smiley and happy. I want people to know that God’s love and endless support were the only reasons I made it through a short bout of depression and into a productive life at college. He was the only way I could see above all the pain and have hope that there was something more and a chance to one day be pain-free.

Hopefully, this all will be a very long time coming and people will be able to say that I lived a long, happy life and it was simply time for her to finally go home and meet her Father. But even if I don’t live to see 25, get married or have kids, I want everyone to know that I lived a wonderful life. Despite the rough patches in my life, I was happy. God blessed me with two fantastic parents who have given me so much — love, support, care, financial assistance, etc. He gave me two brothers that I simply adore and treasure. My friends are amazing people and I feel so lucky to have them in my life. I have two wonderful internships that challenge me and make me enjoy going to work every day.  I am beyond blessed and no matter when it is my time to go, please know that I loved life and that I thanked God every day for the many blessings he bestowed upon me.

Most of all, the episode scared me.

The shots of Dr. House having a bad pain day - popping more Vicodin than normal, rubbing his leg in a certain manner, etc. It was eerily all too familiar.

Chronic pain can be exhausting. Whereas acute pain is intense and awful, you know it’s short lived. It may last a month or a little long after surgery, a couple days, few minutes, or even seconds. Chronic pain just keeps coming. A new wave hits every day and sometimes it makes you gasp for air.

You have a good week or two, maybe a good month, and you start to think that you’re getting better. And then that bad pain day comes and packs a punch that leaves you immobilized. You cry. You question. You hurt.  You wonder how much longer you can take all of this.

Like the patient in the episode, people doubt your sanity. They say the pain is all psychological. No one can hurt that much. You’re just faking it to get your hands on the narcotics. You’re doing it for the attention.

No, I’m not. I don’t have handicap parking because I’m lazy and have a doctor that could sign for one. I have permanent handicap parking at the age of 21 because I hurt. Every day. Every minute of every waking hour. I wake up in the morning and it throbs. Sometimes I have to ice my knee after I get out of the shower. I may smile and laugh. I do enjoy life in spite of the pain. But that doesn’t mean the pain isn’t there. That doesn’t mean my life is perfect or it only hurts when you see it. You only see it when the pain gets too bad where I can’t hide it.

You crack jokes about my use of narcotics to quell the pain. You probably secretly judge me for taking it so much. While I smile and laugh at your joke, I cringe inwardly. I don’t want to take narcotics. The stronger you take, the more it messes with your system. The stigma sucks. But it’s the only thing that I can rely on to help lower the pain. Ice and medication are the only things that take the edge of the pain. I have to numb it. But it doesn’t take it away. I’m so tolerant to the medicine now that it simply makes the pain less intense.

I shouldn’t complain - my life is wonderful and others have pain and health conditions much worse. But House just reminded me how fragile life is and I eerily saw myself in his actions and that, in and of itself, is a bit scary.

Moms Make Everything Better:

You’ve had a bad day or a terrible night,

And you don’t have the strength to stand up and fight.

You want to give up. Life is awful, all right.

But who really cares? It’s your mom.

Your heart just got broken. You’re feeling alone,

With more angst and sadness than you’ve ever known,

So you take a deep breath and pick up the phone.

Who’s always there? It’s your mom.

You’re so overwhelmed. There’s just too much to do.

It feels like the whole world is leaning on you.

You can’t even imagine how you’ll ever get through.

Who’s by your side? It’s your mom.

You’re upset and confused - big decisions to make.

Which path to pursue? Which chances to take?

Would it be a smart move or an awful mistake?

Who’ll be your guide? It’s your mom.

Yes, all through your life, whatever you need

To make you feel better or help you succeed…

Some advice or a hug or a kind, thoughtful deed,

It’s always one hundred percent guaranteed:

Who loves you the most? It’s your mom.

According to the book, a lot of medications are only 40-50% effective. The new drugs tend to be old, much cheaper drugs with a slight alteration that with tons of marketing can become a billion+ dollar drug for the company. As I’ve mentioned in previous posts, I take Vicodin (lowest dosage) every day to deal with my chronic knee pain. Before I had surgery last week, my pain intensity has significantly increased due to an injury and my Vicodin was no longer helping enough. I saw my pain specialist, who I see about once a month, and he upped my Vicodin dosage, gave me a prescription for this anti-inflammatory cream, and a prescription for Cymbalta. He told me that Cymbalta was an anti-depressant drug that had been proven to help with pain including fibromyalga. He gave me free samples of Cymbalta and the cream.

I had just started reading this book and the author frequently used anti-depressant medications as examples of medications that are really pushed onto people. I’m not saying that it’s not important and effective or even discounting its helpfulness to other people. However, I decided to look up Cymbalta on Google before I started taking it. Boy, was I glad I did. The drug turned out to be an anti-depressant for people with major bouts of depression (I was definitely down about all the pain, but not depressed) and also helped with pain on the side. I then looked at the side effects on websites that allowed patients using that drug to leave their feedback. On one site, Cymbalta had 1400+ reviews and a majority of them were negative in nature. Another site had close to 1000 negative responses. To put this in perspective, the Vicodin page had 26 and the few negative ones were about constipation. These patients complained that (1) Cymbalta wasn’t incredibly effective, (2) either made them insomniacs or made them drowsy all the time, (3) made some taking it only for pain and not depression contemplate suicide, and (4) had intense withdrawal symptoms even after being on the drug for only a week. I didn’t want to risk messing with my mind when I’m just going through a rough spot with my pain so I opted not to take it.

Now I’m not completely blaming my doctor for prescribing me the medication. I know for a fact that pharmaceutical sales representatives come by his office and he certainly has his fair share of medication pens, paper, brochures, etc. I believe that a representative told him that the drug could help with pain and highlighted the key positive points. He’s incredibly busy. Packed with patients, depositions all the time, fighting insurance companies, etc. I think sales representatives take advantage of that fact. So I think it’s smart for us, as chronic pain patients, to double check our doctor’s prescription in case something like this comes up. We should be informed as to what exactly we’re putting in our body and if it’s worth the risk.

Letter to people without chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

Thats what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

- Author Unknown

The first is a 2006 survey, which included 303 individuals with chronic pain who took opioids, and evaluated not only patient attitudes but the “impact that chronic pain has on patients who sought care from their physician and are currently using an opioid to treat their pain.” Here were some of the key findings:

• More than half of respondents (51%) felt they had little or no control over their pain.
• Almost two-thirds (59%) reported an impact on their overall enjoyment of life.
• More than three quarters of patients (77%) reported feeling depressed.
• 70% said they have trouble concentrating.
• 86% reported an inability to sleep well.
• More than half (52%) said their chronic pain has put a strain on relationships with family and friends.
• Nearly 70% said their pain has a great deal of impact on their work.

What are my thoughts on those seven bullet points? I personally don’t feel like I have much control over my pain. I can make it a little better with ice, elevation, and medications, but it doesn’t remove the pain. Sometimes my pain gets worse when I am on my knee too long, but sometimes it flares up and I have no idea why. I would certainly agree that pain has impacted my overall quality of life. I currently am not depressed, but at one point I would have considered myself depressed. I have trouble concentrating a lot, especially in class. Chronic pain makes it harder for me to fall asleep, but once I’m sleep I’m usually set.

In terms of strains on relationships, I wholeheartedly agree. While friends and family say that they want to know when things are bad, I can’t truly let them know especially my college friends. If I did, I’d never get invited out! I’d be known as the party pooper. So instead, I try to hide it the best I can and try to make it to the evening. Now, my mom always knows how I’m truly feeling and that has brought us much closer together, but it’s different. Your mom is supposed to love you no matter what and it’s very hard for 20 to 21-year-olds to really understand what this level of pain is like. I do my very best to not let the pain interfere with work, but it has. Whether it’s missing a week because of surgery or asking to do the desk work that day instead of being on my feet, it has a negative impact on what I can and cannot do at work.

Next is an eye-opening look at the problems felt by nurses and physicians as they try to care for and prescribe medications to patients with chronic pain. It’s scary to think about.

In May 2008, the American Pain Foundation released a report outlining critical barriers in appropriate opioid prescribing for pain management and called for a more balanced perspective of the risks and benefits of these medications in practice and policy. Results from a survey completed by nearly 240 primary care physicians, pain specialists, nurse practitioners and physicians assistant were highlighted in the report including some startling statistics:

• 76% believe that moderate-to-severe non-cancer pain is undertreated in the United States

• 77% say that today’s drug control laws/policies impact their opioid prescribing practices

• Only 9% are comfortable with their level of understanding about the current legal environment for opioid use

Not only have I had to fight misconceptions about pain medication as I have taken Vicodin daily since 2005, but I had to deal with that from my pediatrician before I was old enough to move on to an adult doctor. She scared my mom that I’d become addicted and to try to get me off pain medication as soon as possible. That went against everything my pain specialist had said and was just awful advice. The pain specialists have been specifically trained to deal with all of this, but it’s the primary care physicians that don’t understand what’s okay and what’s not in pain treatment especially concerning opioid use.

A 2005 ABC News and USA poll covered a variety of issues under the chronic pain umbrella as part as their week long “Fight Against Pain” series. Here are the most relevant findings to this blog:

• Nearly six in 10 Americans, 58%, say they’ve tried prayer to deal with pain, about as many as have taken prescription drugs. And of those who’ve tried it, half say prayer has worked very well for them in terms of pain relief - tying it with prescription drugs as the top-ranked approach for efficacy
• While prayer is clearly a source of comfort to many in pain, it’s not a replacement for other therapies. People who’ve prayed for pain relief are more apt than others also to take prescription drugs for pain; to have tried other pain therapies; to have seen a doctor for pain; and to report chronic, severe or frequent pain. Prayer thus looks like an additional approach for those with greater pain problems, rather than a replacement.
• Chronic pain is exceedingly rare among young adults - just 3 % of those under 30 report it. Instead they’re most apt by far to report acute or specific injury-related pain - seven in 10 young adults say their last pain experience was acute. Their elders (and not just senior citizens, but also those in their 30s through 50s) are much more likely to report recurrent or chronic pain.

While I can say that medication is the sure fire way to reduce pain to some extent in a quick fashion, I find prayer to be the most comforting thing I could do when I’m struggling. It gives me hope and helps me not to feel as alone as I sometimes think I am. It’s an incredible source of comfort to me.

And according to this poll, 3% of young adults report chronic pain. And here young adults are being classified as 30 and under. Just 3%! That puts those of us who have been dealing with chronic pain as teens in a very unusual and thus more challenging position.

Anyways, the founder of Hopekeepers, Lisa Copen, started National Invisible Chronic Illness Awareness Week in 2002. It is a week-long event with online seminars since many people with chronic pain and illnesses would have a hard time attending this conference whether it’s a physical or financial problem. Since these seminars are online, you do not have to listen in live. You will also be able to listen to them later (like a podcast). These seminars have been created so that everyone (Christian or non-Christian) can benefit from the week. Just one seminar discusses illness and faith.

Next week (September 8-12th), there will be 20 online seminars ranging in topics from “Assess Yourself: Finding a Job You Desire and Can Do Despite Illness Limitations” to “Stress-busters that Work” to “Secrets of Paying for Medical Care.” There are two seminars that stood out to me as a young person dealing with chronic pain: “Friendships, Dating, and Marriage: Can It All Come Together When You Are You and Chronically Ill” and “College with Chronic Illness: How To Get Help and Respect from Administrators and Faculty.”

There are a lot of really interesting seminars I hope to listen to. I’m not sure how many I’ll be able to listen to live, but I certainly will listen in sometime within the next two weeks. If you want any more information about the online conference, please visit their website!

Someone suggested that I watch the Larry King Live interview with the Chapman family. If you like to listen to Christian music, you will recognize the name of Steven Curtis Chapman. Sadly in May 2008, his son Will accidentally ran over his younger five-year-old sister Maria, who passed away en route to the hospital. It was a horrific accident and I can only imagine how hard it must have been on the entire family.

Well, they decided to go on Larry King Live to talk about the accident and how their faith helped them get through this troubled time. It was just under an hour interview and was truly inspiring. I actually started tearing up during portions of the interview. The strong faith displayed by not only the parents, but the three older children was amazing. You can view the first of six parts of the interview by clicking on this link.

In part four or five, Steven commented on something Caleb Chapman had told him earlier and it really stood out to me.

“When you stand too close to a mural, you don’t really get it. But as you step back, you see the bigger picture.”

This comment was in regard to how this tragic death seems completely awful and maybe even pointless when you stand too close to it, but if you step back and see the big picture you’ll find a reason for it. When you are going through a rough patch, it’s hard not to just stand too close. But it’s important to remind yourself that there is a bigger picture so try to take a step back.

Romans 12:12 - “Rejoice in hope, be patient in tribulation, be constant in prayer.”

If that doesn’t sound like the perfect daily to do list for a Christian with chronic pain, I’m not sure what is. I certainly believe that there are other verses in the Bible that offer more encouragement to chronic pain sufferers. However, this verse is one I need to be reminded of on a daily basis.

To Do List:
1) Rejoice in hope. Look for the silver lining and take delight in the blessings of life. Even if the outlook doesn’t appear to warrant it, we need to continue to look forward to with desire and reasonable confidence.

Proverbs 18:14 - “The human spirit can endure a sick body, by who can bear a crushed spirit?

2) Be patient in tribulation. When things are going poorly and you are hurting, you wish that it would pass right away, but life doesn’t usually happen like that and we need to learn to be patient without always trying to rush through life and its sour moments.

3) Be constant in prayer. Some of us only tend to turn to God when the going gets tough while others of us turn to Him only in the good times. No matter what (good or bad pain day), we should be praying fervently.

—————————–

Three days after writing what you just read, I had to actually stop, remind myself of the verse, and then apply it to my life. Today. I finally was able to read the final denial letter from the external insurance review board (you can read it here). I started crying about halfway through it and couldn’t stop for like an hour. But after talking to my wise mother, I calmed down and remembered how applicable this verse was. When you get bad news, particularly when it seems like one in a string of bad news, it’s a struggle to live out this verse but we still need to do it.

1) Rejoice in hope. Yes another girl got approval for the same surgery, but that gives me some leverage with the review board so there is still a chance at them overturning the decision.

2) Patient in tribulation. This is the hardest of the three for me. I just want them to correct their error right now, but unfortunately these things take time and just need to be patient and wait on God’s perfect timing.

3) Constant in prayer. Whether I’m venting, thankful, or simply confused, I need to voice my thoughts to Him. Constantly. Not just when the timing works for me or when I need something. Pray always!

What does that mean? I have no other avenues to turn to in terms of getting insurance to cover my surgery. As a result, I must raise $30,000 in the next 11 months if I want to have surgery next summer. Fortunately that’s a solid chunk of time, but it’s also a ton of money that needs to be raised. And I have a feeling people would be more receptive to financially assisting me if I was fighting a more serious problem like cancer, but it’s just a knee surgery and chronic pain is a more invisible health problem. Because of that, only my friends, family, and coworkers would truly understand the role pain plays in my life whereas the average bystander would look at me and likely see nothing wrong because I don’t openly showcase my pain (unless it’s a really bad day and I have to limp).

Yes, I cried tonight after learning the bad news. However, I’m determined to keep a positive attitude about it. If this surgery and the timing of next summer is truly God’s will and not just my desire, I will be able to get the $30,000. As such, I am completely putting my trust in God because I obviously don’t have $30,000 just sitting around. Hopefully, it will be very exciting to see what God has in store for me over the next 11 months and how I’m able to raise $30,000 (if that, in fact, happens).

Here are some verses I will be focusing on as I continue to pray and believe:

Ephesians 6:18 - Pray in the Spirit at all times and on every occasion. Stay alert and be persistent in your prayers for all believers everywhere.

Matthew 21:22 - You can pray for anything, and if you have faith, you will receive it.

Romans 4:20-21 - Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. 21 He was fully convinced that God is able to do whatever he promises.

What do these verses tell me? Through prayer, I am joining my heart with His. I need to pray simply and wholeheartedly. I must pray because I believe it and expect God to fulfill his promises.

I am a well-organized individual who is goal-oriented and has experiences with fundraising. In addition, I’ve interned in public relations so I will hopefully be able to market and promote my fundraising efforts well. This goal of $30,000 will allow me to flex my creative muscles for the most important fundraising efforts of my life and I already have ideas streaming through my head. I will continue to post here with thoughts on chronic pain, but I will also document my effort to raise this large sum of money.