Teens in Chronic Pain

I came across this letter to people without chronic pain at this blog and wanted to post it here:

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

I came across the American Pain Foundation and they provided some very interesting statistics about its impact on quality of life as well as the issue of pain management.

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.

Three years ago as a freshman in college, I participated in a small group called HopeKeepers at the church by my house. The group was composed only of people currently dealing with chronic illness and pain. I got a lot out of the group as I was finally able to interact with people who truly understood what it was like to be in constant pain day in and day out. Unfortunately, I started getting really involved with groups on campus and I didn’t have the time to make a 30 minute commute each way to attend the meetings every week. However, I continue to follow the overall Rest Ministries organization, which is what HopeKeepers fits under, and receive daily devotionals encouraging Christians with chronic pain and illness.

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!

The past week and a half has been pretty rough for me. My knee buckled at work resulting in a minor knee dislocation, sprained LCL, and possibly torn lateral meniscus. I then moved home after spending 10 wonderful weeks in Chicago. Between the concern over the insurance denial, a pending lawsuit, and then the injury, it hasn’t been the best week for me.

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.

I have one last shot at getting approval for my required medial meniscus transplant. We can send in any documentation that we feel shows why I should have this surgery to the insurance External Review Board. This board is “above” Blue Cross Blue Shield so what they say goes, but apparently this board rarely overturns the insurance company’s denial. Along with letters from my surgeon, pain specialist, and physical therapist, as well as studies showing how meniscus allograft transplants can improve one’s quality life, I’m sending the following essay:

To Whom It May Concern:

My name is Christy Hammond, and I am a 21-year-old student attending the University of Michigan. Blue Cross Blue Shield of Michigan recently denied my request for a medial meniscus transplant for my left knee, which my surgeon Dr. Frank Noyes believes will reduce my pain level by half. I am writing this letter to appeal to you and personally ask for you to please reconsider through the External Review Board.

While growing up in Michigan, I was the definition of a tomboy. I lived to play sports and was active around the clock and year round. Like many young kids, I wanted to become an Olympic sprinter. As I grew older, I soon realized that I would never be fast enough to achieve that dream. However, my love for the sport of track and field persisted. I ran the 100m dash and started the 4×100m relay in sixth grade and continued through tenth grade. As a freshman in high school, I took sixth place at regionals for my division.

In my sophomore year of high school (2003), I tore my ACL during the first hour of basketball tryouts. After a lot of hard work in rehab and countless hours in the weight room, I was able to return to my beloved sport. While my 4×100m relay team finishing fifth at regionals was certainly great, my proudest track accomplishment was actually improving my 400m time by nine seconds following my ACL reconstruction. Unfortunately, that race was my last one.

In the summer of 2003, my knee buckled while I was on vacation, and I was never able to run again. I do not know if I can ever accurately describe the emotional pain that I feel when I watch my friends and former teammates run. Running is such a beautiful joy that I miss terribly. When my surgeon told me that at the age of 17 it was unlikely I would ever run again, I cried and begged God to let me run again.

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You know you’ve been on crutches too long when… [as compiled by myself and others on the KneeGeeks forum!] There were more than those listed below, but I chose only those applicable to me.

1) People are surprised to see you without them

2) Your arm muscles are in the best shape ever

3) You use them like chopsticks and don’t have to bend over to pick something up

4) You have developed calluses right below your armpits and on your palms

5) You decorate your crutches for special occassions (ie. green and red ribbons for Christmas)

6) You have friends/co-workers/teachers sign them because you can get more messages/autographs than any cast!

7) You crutch faster than you walk

8) Strangers always marvel at your speed and agility on crutches

9) You dream of “pimping” out your crutches (ie. adding rhimestones and color)

10) You’ve learned to dance on them (or in my case, when you’ve gone to two Homecoming dances on them and with an immobilizer)

11) People call you gimpy because you are never without them (all my high school friends called me Gimpy)

12) You wish you could use the crutches because they help with pain, but your OS (orthopedic surgeon) won’t let you because your quads atrophy too much

13) Your friends get bummed when you don’t have the crutches because they can’t play “crutch and field 2004″ and use the crutches to pole vault over couches, etc.

14) It’s easier to push your way through a crowd because you can just hit people. This was great in crowded high school hallways.

15) It becomes a good luck charm on your high school track team.

16) When, as a senior in high school, friends can’t remember you ever off of them even though your freshman year was the only year you never used them.

17) You look at them and feel at home.

18) You absolutely have no problem opening doors or stopping them from closing much to the amazement of friends and family.

19) You get sad when your PT or OS tells you to wean yourself down to one crutch because it slows you down.