WHEN YOUR DOCTORS GIVE UP ON YOU!

I just read a fascinating article about chronic pain especially as it effects women. In this month's issue of O Magazine, I read the following in an interview piece with the author of "The Pain Chronicles," Melanie Thernstrom, herself a chornic pain sufferer: "Studies have shown that pain in women is viewed much more skeptically than in men. . . women generally have a lower pain tolerance [than men]." In other words, while women experience pain more intensely, we are taken less seriously by medical professionals. This is consistent with an experience I had with my primary care physician. I brought Jeff along with me to an appointment out of fear that my doctor wouldn't take me seirously. While I was describing my pain, he looked at my husband and said, "Is she always like this?" I wanted to hit him and HARD!

The article went on to say that there are 70 millions Americans suffering with chronic pain and it is one of the most under treated diseases. I feel like I could go on forever in pain taking my Tramadol and Tylenol without any of my doctors really caring or looking into things further to find out if we are missing something. I have often wondered if there is a missing piece to this puzzle that has become my life in pain. In fact, I have an appointment with my doctor in a couple of weeks and I am going to push him to look into some other areas for answers. I have to fight to get the answers I need and I need a proper diagnosis that makes sense to me. I deserve that!

We treat our medical professionals like they are better than us when they are simply providing a service and we should expect good service. It is no different than going into a store to buy furniture, more serious, but not different. Like we expect to have our furniture delivered within a certain period of time, we should expect our doctor to do his or her best to find out why we are in pain and to not give up on us. I never thought I would be in my current situation - in pain without the support of my chosen medical professionals. It makes me really mad when I'm not equally sad about it. But, the fight continues because as I always say to nauseum - I WON'T GIVE UP! They might have given up on me, but I haven't!

[Reference: "Pain & Prejudice." Jennifer Kahn's Interview with Melanie Thernstrom. September 2010 issue of O Magazine]

CARPE DIEM & Other Ways of Dealing with Pain

When you're in pain, there are numerous ways to respond. First, you can give into the pain, lay on the couch and be miserable. Sometimes that is the most you can expect of yourself depending on how bad the pain is. Second, you can keep your mind and/or body as busy as possible so that you don't notice the pain as much. Third, you can meditate, pray and work on staying as relaxed as possible no matter how bad the pain gets. Finally, you can feel sorry for yourself and be angry.

No matter what you choose, the pain is there and you must deal with it. Your personality often dictates what you decided to do. In the early months of my back pain, I did a lot of the feeling sorry for yourself and/or getting angry. Over time, I worked on staying busy and/or praying and meditating. That is not to say I don't ever indulge in "Why me?", laying on the couch stuff. I do and it serves a purpose and then, I move on to more productive ways of living my life. I'm not pain free for now and I have to decide to make the most of my life even when I'm in a lot of pain.

There are people in this world, millions of them, worse off them me. I can walk. I am relatively healthy. I have a lot of resources at my disposal. I have a lot of good friends & family. My life is good! And I refuse to think that I have it that bad because of a condition that I may end up with for a long time. I choose to enjoy my life and make the most of it no matter what. This is my life and I'm going to seize the day no matter what. CARPE DIEM!

Change Can Be Scary Even When Its Good

Life is really good, but scary sometimes too. Katelyn starts Kindergarten this week. I think I'm more nervous than she is, but I wouldn't know with much certainty. She tends to take after her Daddy and not talk about her worries very much. I think change is good, but I've never done very well with it. Even when it is good change, it makes me nervous. My daughter is growing up and that's exactly what we all want as parents, but it is also the beginning of the long goodbye. It seems like just yesterday I was crying as I took her crib apart and then she was off to preschool and now real school.

I've heard many times that our relationship with change is our relationship with life because life is constant change. Over time, I've gotten better with the change. When I was young, I used to wake my mom up and tell her, "Wake up! I can't sleep. I'm worried!" This usually took place the night before something big like the start of school, etc. Since that time, I've grown enough emotionally and spiritually so that change at least doesn't keep me up at night. Not like Jeff would stay awake and talk about my feelings until 4 a.m. like mom always did (LOL).

A lot of what I've dealt with when it comes to my back pain involves change and acceptance of a new way of life. My days are different now because of a change that happened virtually overnight. I woke up in pain one cold morning at the beginning of a new year in 2009. Things have never been the same since then and I resisted that full force for a long time. Acceptance of my back situation has brought a lot more peace and inner strength to my life. My relationship with my chronic pain situation is my relationship to life? If that's the case, I've grown a lot since those late nights sneaking into my mom's room for comfort (LOL).

'No Man Is A Failure Who Has Friends'

What do your family and friends mean to you when you are in pain? For me, they have meant the difference between keeping my head above water and drowning. There are so many friends and family members who have helped me to get through my back stuff since it started in January of 2009. My husband has taken on more than his fair share to keep our home clean and dinner on the table. No one knows my pain more than Jeff, the man who helps me get the Ben Gay patches on my back each night before bed. They can be surprisingly difficult to get on by yourself (LOL). It is clear to me that Jeff took the vow “in sickness and in health” very seriously. Thank you, Jeff!

My dad, mom and mother-in-law have been hugely supportive of me as well. Hugging me when I needed a good cry and putting up with my endless conjectures on what I could or should do next. I am so grateful for my friends who also listened to me go on and on about my back over coffee, lunch, dinner, etc. I am truly blessed with some of the most wonderful girlfriends. My coworkers have been very supportive as well. It is so cool to know that the people in your life want you to get well almost as much as you do. This experience has made me feel like Jimmy Stuart in “It’s A Wonderful Life”: “No man is a failure who has friends.” And I do, indeed, have wonderful family and friends!

Finally, I must note my beautiful daughter. I want to show her how to rise above the challenges in life with faith. She prays for me at every meal: “Please let mommy’s back get well.” She rubs my back when we read books. One look into her little face and I know I can do more than get through the pain. I am empowered to show her that we are not defined by our challenges, but by how we respond to them. I will show her how God can help you shine in the face of adversity!

AS SAFE AS HOUSES

I've recently read in a book and heard on TV the old phrase, "safe as houses." In The Shining, the hotel manager claims that a broken down elevator is "safe as houses." I love that phrase! "Safe as Houses." It conjures up all the warm and relaxing notions we tie to our homes. Our homes are our refuge, our place to come in from the storms we sometimes face in our daily lives. My home has definitely served that purpose for me especially since my back pain started.

When the pain is really bad, one of the biggest things that gets me through is the fact that I get to come home at the end of the day and rest in my living room or bedroom. I feel so safe in our little house. Nothing can hurt me when I'm cozied up in bed reading a good book. Being home renews me and makes me feel safe and empowered to face to world again.

For many years, I lived in apartments and condos. And let me make clear that there is absolutely nothing wrong with apartments and condos, but I longed to have a house of my own some day. This being our first house it is the realization of a long held dream. It may not be large or fancy, but it is ours and it has taken good care of me during this challenging period of my life. No matter what we are facing, coming home continues to be a tremendous blessing. My home makes me feel"safe as houses."

NO EXCUSES - I MUST EXERCISE!. . . REPEAT. . . I MUST EXERCISE! (lol)

I started exercising again this week! I’m sore, but my back doesn’t hurt any more than before. It is just the normal ‘I haven’t exercised in a while’ sore. I’m very motivated to start taking better care of myself and exercise is central to taking better care of the only body I’ll ever get. I’ve been doing the Wii Fit yoga, running and step aerobics. I also used our treadmill one night this week. It feels good to be getting back on track with exercise. I’ve needed to do this for a while, but in all honesty – I’ve used my back pain as an excuse not to exercise. I should have been using it as a good reason to exercise!

Before my back problems, I used Kate as an excuse not to exercise. To be a good mom, I should spend all of my non working time with Katelyn. Because being unhealthy will do my daughter any good, right? I imagine before I had Kate, I had a different excuse not to exercise. It is so easy to come up with reasons not to do the best for our body and so difficult to make the decision to dedicate ourselves to exercise and other healthy habits.

I’m only on day 5 so I am by no means a role model yet. It will take time to get my body back in shape. But, I am totally motivated to be a good role model for my daughter. By taking good care of myself, I’m demonstrating to her the importance of self care. I also think it will make me feel better in every way – emotionally, physically and more. Wish me luck! Tonight I’m trying the hula hoop exercises (LOL).

HAPPY NO MATTER WHAT

It is amazing how happy you can be no matter what. There is so much joy to be had if we can only see it in the world around us. I woke up today in pain as always, but I was so happy to kiss my little girl awake this morning. It made me smile to put on a pretty dress and walk out my front door feeling good about myself. I was filled with joy in my car this morning as I looked at all of the beauty in the country. Indiana is truly a beautiful place to live! And as I write this, I am happy. Still in pain, still wearing a Ben gay patch (LOL), still wondering what will finally end my pain, but HAPPY.

Not only can we look around and see what there is in our lives to be happy about, but we can look at the lives of others and be grateful for what we don’t have in our world that others do. I am not facing a deployment to Iraq and neither is my husband. I am not facing a life threatening illness. I don’t live in a war torn country and I’m not facing poverty or loneliness. I am literally and truly one of the richest and most blessed individuals in the world. . . pain or no pain.

There is so much to be happy about no matter what. If you are facing a truly tough time, try to look at the things that are going right in your life even if it is the most basic stuff – being able to breathe without difficulty, being able to walk outside your door and not face bullets flying around your neighborhood, being able to love the people in your life, being able to give of yourself to others worse off than you. There truly is so much to be happy about whether my back heals or not.

His Grace Is Sufficient

"To keep me from becoming conceited. . .there was given me a thorn in my flesh. . . But he said to me, 'My GRACE is sufficient for you, . . ." (2 Corinthians 12). This is one of the passages from the Bible that our Pastor focused on this morning and it really spoke to me. Part of his message was that God works best in our lives when we are weak. I have found this to be true in my experience with chronic pain. I have discovered my dependence on our loving God through my pain. I am able to keep going daily because of my trust in God's love for me.

I believe that no matter what we are facing, we will be OK because of God's grace. "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day" (2 Corinthians 4:7-9, 16). This is the "I Will Survive" message found throughout the Bible. Because of my faith, I know that no matter how I'm struggling physically and/or mentally, God will get me through today, tomorrow, and the day after that.

Each new day poses both challenges and joys, but my pain is the same most days. In my opinion, the fact that I and so many others keep going no matter what can only be accounted for by the grace of God. It gives me the fighting spirit that gets me through. God's loving kindness moves me forward each day and gives me hope for tomorrow. His grace and kindness is indeed sufficient. Not only does it give me the will to rise above my pain, but it empowers me to do more for myself and for others.

Can't Stop Believing

It seems like just when I'm ready to accept what is in terms of my back, I get a little spark of hope. The part of me that doesn't want to get hurt again is irritated with the part of me that wants to believe the pain might go away. I was at the hair salon this morning and a friend from church told me a story about someone who was in a similar situation (i.e. tale bone pain) and it ended up to be a thyroid issue. Once that issue was taken care of, the tale bone pain was gone within a month. Ding, ding, ding, ding went the alarm in my head. Hope! Maybe, that's it! "Oh, but Melissa - don't get too excited," says that part of me that doesn't want to be disappointed yet again.

What is it about hope that makes you feel like you can conquer the world, overcome any obstacle? I LOVE that feeling! I think hope is like God whispering in your ear "Believe me! I've got great and wonderful things in store for you, little girl!" And I think He uses the wonderful people in my life to put little pieces of hope into my world. So even if the ideas people generously give me don't turn into the answer I'm looking for, I'm grateful for the smile that those ideas put on my face and the hope that fills my heart in the moment I have something new to look into that might take away the pain.

I wish the hopeful side of me would always win, but it doesn't. Sometimes I want to say, "Melissa, you idiot! This is your life; accept it. Don't get hopeful! You'll just get hurt again." I need to learn to tell this voice, in a nice way of course, "Shut the hell up! If hope is all I have, then don't take that away from me too! God told me He has great things in store for me and I CHOOSE to believe him. . . on a good day."

I Will Survive and Then Some

For a while, I felt like I should put a lot of stuff on the back burner until I was well. I did that for at least the first six months or so. I didn't take on anything new related to my career. I didn't take on extra activities outside work. I didn't do a lot of things. Then, I decided enough was enough. I was angry about giving stuff up because of my pain. I was done giving anything up because of my back problems.

My decision to keep moving forward no matter how much pain I am in has made a huge difference in my overall well being. I may be in pain when I do certain things, but there is no way in hell I'm going to avoid living my life because of the pain.

So, I go on rides with my daughter at the fair. I work as hard as I've always worked. I go to Chicago even though it involves 4 hours of sitting on a train. I run around with my daughter. I travel even though sitting on a plane is painful. I go out with my friends. I LIVE and I won't stop living because of my pain. I am viciously dedicated to not only surviving my pain, but continuing to thrive during this challenge. I will do more than survive this!

WHO REALLY CARES ABOUT YOU?

What impact will my back problems have on my daughter? I know she hears me talking about it all the time. I try to make it clear that this is my problem, an adult problem that she doesn’t need to worry about. Unfortunately, she takes after my sensitive ways and worries anyway. She prays for me every night at dinner. She asks me if my back hurts all the time. She tells people in her world about her mommy’s bad back. It bothers me that she worries about me so much, but I truly appreciate her concern and love.

When you are dealing with chronic pain, the people who love you hurt as well. They feel for you and want to make it better even though they know they can’t. They help you come up with new ideas that might help. They worry and pray for you. I think it bothers my mom the most. As a mother, it makes her feel awful that she can’t make this better for me.

I have known for a while that you find out who really cares about you during the challenges you face. When something bad happens to you, you find out who will be there for you no matter what. Knowing who really cares about me is another huge gift this experience has blessed me with and I’m grateful for that. Do you know who really cares about you? You’ll find out the next time life hands you a crisis.

How to Get from A to Z or Pain to Pain Free

I'm the type of person who when faced with a challenge, comes up with a detailed plan and follows it until the challenge is overcome. I get a notebook out, write down my ideas and work the list of to dos until I can say "mission accomplished!" I talk to friends, network with people in the know, read books, etc. I get the job done!

The most difficult thing about where I'm at now with my back pain is that I've worked my list and I'm pretty much out of things to try or I should say, I'm out of things I'm willing to try. I've worked my list and I'm still in pain. What do I do now? Accept the pain? Create another list? What would be on that list?

Maybe, it is not necessarily time to accept the pain, but time to let go a little. Maybe, I need to work on stress management and letting go of "the plan" for a while. It might do me more good than everything I've done combined. You never know what will finally lead to sweet relief. . . could it be that letting go of my perfectionist tendencies to over plan will finally ease my pain? I'm willing to give that a try! What do I have to lose?

"Have You Tried This?"

I often get the following questions from well intentioned people when it comes to my back pain: Have you tried physical therapy? Have you seen a back surgeon? Have you tried a chiropractor? Yes, Yes, and Yes! So, I'm going to get it all out - all of the things I've tried:

1. Oral steroids: They helped for as long as I was on them and then, the pain always came back.

2. Physical Therapy: I tried full courses of physical therapy at least 3 times, maybe more, and the pain either stayed the same or got worse.

3. Pain Management Doctor: I saw a pain management doctor over the course of about 6 months and had 3 or 4 epidural injections, etc. to no avail.

4. Spine Surgeon: I saw one of THE BEST spine surgeons between here and Chicago. He told me that the tale bone is a very challenging source of pain and he doesn't have any surgical options for me. Thanks, Doc!

5. Cleveland Clinic: The doctor at the Cleveland Clinic in OH told me that it looked like I had some pretty good doctors at home. She didn't disagree with their diagnosis and had no further answers for me. I'm so glad I went all the way to Cleveland for that!

6. Chiropractor: I saw a Chiropractor for over 6 months. He did adjustments, a new form of traction, and get this. . . a cold laser treatment. For weeks, I had to expose my rump while a laser worked on healing my back. Yes, desperation will make you do strange things. And of course, it didn't help!

7. Rheumotologist: The rheumotologist wanted me to be treated for a genetic disorder she believes I have even though I tested negative for it - the only way to find out if I really have it is to try an injected medicine. No thanks!

8. Acupuncture: This was my most recent adventure! I'm not saying it wouldn't eventually have worked, but I'm not going to experiment with it for almost $5,000 which I could make in two easy payments or they generously offered to give me a high % loan. Gee, thanks!

9. Prayer: Now we're at the point in my list where I get to the things that have actually helped. I went from the begging prayers "Oh, God, please God take the pain away. Give me my life back!" to "Please bless me as I wait for the pain to go away. Thank you for bringing healing my way." Going from the begging prayer (which we all do from time to time) to the faithful prayer is not a short distance. But, I truly do be live that God has a plan of healing for me; it's just a matter of time.

10. Support of My Friends & Family: So many of my friends and family are praying for me. They listen to me when I'm sad, angry, frustrated, or smiling with hope. I don't think I could have gotten through the last 20 months without them.

Thank you, God. Thank you, friends & family!

Live Through This

My parents lost a son to Sudden Infant Death Syndrome (better known as SIDS) when he was two months old, the day after his baptism. My mom found him in his crib all blue and already gone. My dad found out at work. On the day of his funeral, my parents could not walk away from his tiny little casket at the cemetery. My Grandma White gently touched their shoulders and helped them to walk away.

Every challenge I've faced in my life pales in comparison to the death my parents had to live through - the worst death - the death of a child. My parents also both lived through cancer the very same year, my mom breast cancer and my dad prostate cancer. They've been married since they were 20 and they've definitely had their ups and downs. They are truly the strongest people I know.

In part, it is looking back at the strength my parents have shown in their lives that helps me to get through all my back stuff. And like my parents, there is an abundance of blessings that surrounds my pain. My daughter is bright and healthy. My husband, also my best friend, has a really good job. I have a ton of wonderful friends and loving family. These are the good old days that I'm living through in spite of the pain. It will NOT break me! I will live through this.

You Are What You Bear

I'm sure you've heard it as many times as I have: It is how you respond to adversity that shows your true character. In other words, the person you really are shows through in how you respond to the challenges in life. I think about this principle a lot when I'm deciding whether to indulge in feeling sorry for myself or to grin and bear the pain with strength and a positive attitude.

I tried to find the place in the Bible that talks about getting "double for your trouble," but I couldn't find it. I know it's there and what it means is that God will bless you doubly for every challenge you face. I don't think this means you'll win the lottery after facing a crisis. I think it means, in part, that you can become a better person, a stronger person after facing adversity. Becoming stronger is a huge blessing that an easy, pain free life might not provide. Not that winning the lottery wouldn't be great, but making some real positive changes in who we are is a longer lasting, more profound win!

I wish I could say that I've always chosen the positive, smile on my face attitude about my pain. A lot of the time I have, but there have been days when I let myself be grouchy, emotional and even angry about what is going on with my back. What I know for sure is that at the end of this pain (and I truly believe there will be an end),I am a better person for having faced this struggle. Strange as it sounds - it has been a blessing in disguise. Strange, huh?!? I wouldn't mind winning the lottery though!

What About Tomorrow?

It is hard for a Type A personally like myself to not focus on the future. What will happen with my career in the years ahead? What will Kate be like as she gets older? Where will we be living 5 years from now? The questions are endless.

When you are living with chronic pain, the questions become more short term. How will I get through this morning when after 2 hours of sitting, my back is killing me? How will I sit through that whole play we have tickets for on Sunday? I spent all that $ and now I might not enjoy it as much.

When you are living with chronic pain, you start fantasizing about a future that does NOT include Ben Gay patches and trying the next alternative therapy for pain. Being able to ride a bike again becomes a big goal. Being able to live w/o pain becomes the ideal future! I have come to the realization that my pain keeps me more focused on today and maybe that is the gift in all this pain.

Are You There God?, It's Me. . .Melissa

It's been one of those days! My daughter has decided to go through a bratty phase lately. My mom fell down and had to go to the ER. And every 3 seconds my phone or email demanded my attention. And to top it all off, I have had nails on a chalk board pain in my tale bone area. And all I really want to do is curl up with a good book in my jammies and say no to the world.

It is tempting to question God on days like this. Where is God when you feel like you're losing an uphill battle? Where is God when you feel like you are merely surviving your life instead of enjoying it? Where is God? He is right there next to you watching you with love in his heart. I truly believe that! God is there to keep you calm, to keep you going. I know without a doubt that I would not be the fighter I am without His love and grace.

God is in the details on days like today. He keeps me busy with my work so I can't focus on my pain too much. He helps me focus on helping others like my mom who needed me today so I remember what I'm on this earth to do. He helps me focus on my daughter who obviously needs more guidance so she can become an adult I'm proud to call my daughter. God is in the smile on my husband's face when he walks in the door after an equally challenging day at work. God is in the hug I received last night from my friend and fellow mother who knows what I'm facing with my sometimes difficult 5 year old. God is there even when we can't imagine him being part of our chaotic lives. He is here with me and that knowledge keeps me going when I want to give up.

Finding Meaning in Your Pain

Believe it or not, my back pain has made me a better person. I've grown in my faith, become stronger and more empathetic to other people facing challenges. I feel like I've gotten the lesson - slow down, enjoy your life and be grateful for the little things. Got it! Now, I want to move on, but it is just not working out that way.

For anyone who has tried alternative medical treatments for pain especially for the first time, you understand the nervousness and the struggle to remain open minded. . . oh, and keep your wallet open too because it is VERY expensive. On my first visit to a chiropractor, I had to cough up $3,000. After 4 acupuncture treatments, I was told it would cost over $4,000 to become pain free again. They get you in a little room and tell you, "don't you want to be able to have fun with your daughter again?, pick her up?, etc." Of course, I do! But, I don't need a guilt trip when I'm already in pain. It almost seems like they are taking advantage of a really vulnerable group, people like me who would do almost anything to have their pain free lives back.

Finding meaning in my pain is an ongoing struggle, to keep learning from what seems like the worst thing that has ever happened to me. Finding meaning in the mornings when I wake up figuring out what I'll need to do to function at work and in my life. Finding meaning in not being able to ride a bike with my daughter. Finding meaning in knowing that I'll really hurt if I clean my house. I continue to know that my pain is making me a stronger, better person, but I still want my life back . . .