The Patient needs Patience!

I have been trying to learn to be more patient since I was about four years old, and it's a lesson that I'm still working on.  This surgery has me once again struggling with this, and I'm not doing a very good job of putting what I have learned about patience to good use.  I stopped praying for patience years ago, because every time I did pray for more patience, God seemed to send me a test to see if the lesson was starting to take.  Most of the time, I failed miserably!

As of today, I am almost two weeks out from the surgery itself.  I am walking with my cane all the time now, instead of using my crutches around the house.  I saw my doctor a week ago, and at that time, I was still using the crutches, but I was already bearing weight on my leg.  My doctor actually gave me a high five when he saw me coming down the hallway!  I don't know about you, but I've never had a doctor do that before.  My surgeon told me that I was doing far better than he expected and to keep up the good work.  I was really proud of myself, and I decided that I was just going to breeze through this recovery period.  I thought that I was going to be back to my old self so far ahead of schedule that the whole world would be amazed.  Well, I have a talent at making God laugh!

Yesterday was a really lousy day for me.  First of all, walking was very painful, and got worse as the day went on.  But, being stubborn, I refused to put the cane down and use my crutches.  I knew that using the crutches would give my leg a bit of a rest, but in my mind, this would be going backwards, which I just refused to do.  Then, I started needing help getting out of my chair.  As the day went on, I felt like things were getting worse with everything I tried to do.  The last straw came when I decided to take my first real shower in days.

Now, I have to backtrack just a little bit.  The other day, my husband went out and bought me a shower stool for the tub and a nice, hand held shower.  I was so excited, you would have thought that he had brought me a diamond ring!  Just the thought of taking a shower instead of another sponge bath just seemed like a little piece of heaven.  I couldn't wait to get into the tub and just let that warm water wash over me.  It was late in the day before everything was ready for me to go in and take that first shower.  Remember that the day has been pretty crappy so far, and Murphy's Law is always looking for a moment to rear its ugly head.  This was that moment.

First of all, the shower chair was too large to fit into our tub, so we turned it sideways to make it fit.  Sitting on it was quite uncomfortable, but I was willing to sacrifice some comfort in order to take that shower.  But then, I couldn't figure out the mechanics of getting into the bathtub!  That was the last straw for me.  All I could do was cry!  My husband kept trying to help me, but I was beyond help at this point.  I was convinced that I would never be able to take a shower again, and that I was a complete failure.  For the next hour, I sat in my bed and bawled my eyes out.

Today, things seem a bit brighter than they did yesterday, although I still don't have much more patience with myself.  But I didn't need any help getting out of my chair this morning, and I consider that an accomplishment.  I'm also telling myself that there is no shame in needing help.  Instead of thinking that my surgery was two long weeks ago, I'm trying to understand that two weeks really isn't that long ago, and I am doing pretty darn good, all things considered.  I'm also trying to come to grips with the fact that my husband actually likes being able to help me.  I've been the caregiver in my family for so long that it's hard for me to accept the help that is being offered to me.  There isn't any shame in taking the time to allow myself to heal, or in admitting that there are still some things that I can't do at this point.  And it's taking all the patience that I have to do this!

Humility and Gratitude

As many of you know, I've been away for the past week because I had knee surgery.  I had torn the meniscus in my left knee and it had to be repaired.  This was supposed to be a simple, arthroscopic procedure, but it turned out to be a bit more than that.  Most of the time, the incision from an arthroscopic procedure is a small puncture type wound.  But when my doctor got in there, he discovered that, in addition to the torn meniscus, I had large bone fragments floating in my knee which had to come out.  Because of that, he ended up having to make two half inch long incisions.  I'm glad I didn't know about this until yesterday, because it could have emotionally slowed down my recovery.

I am doing very well!  I am already starting to walk on my leg using my cane instead of my crutches.  And because I've had many other knee surgeries, I've also started doing some of the exercises that I remember from those operations.  I saw my doctor for my first follow up appointment yesterday.  He removed the staples from my incisions and told me that I was doing better than expected.  In fact, if I continue to do this well on my own, he isn't going to send me to physical therapy!  Of course, I'm not rushing things, but I am happy that I'm making as much progress as I am.

Going through this has taught me a couple of valuable lessons.  The most important are gratitude and humility.    I have always loved my family, and I have done everything that I can to take care of them.  This surgery has taught me that they love me just as much and are willing to do just as much for me.  The first few days after my surgery were really pretty rough.  I couldn't get up and down by myself.  I couldn't get a drink by myself. And, at the risk of being a bit graphic, there were a couple of times that I couldn't get off the toilet by myself. My husband and sons have been wonderful!  They have been there to help me every time I've needed something.

The surgery was out patient, and I got in bed once we got home.  Dale, my husband, and Matthew made me feel like I was in a 5 star hotel.  If I called out, one of them was there immediately.  The kept me in ice packs and pain medicine.  They helped me to the bathroom every time I needed to go.  Matthew even covered his eyes a couple of times and pulled me up off the toilet!  I couldn't be more grateful for the two of them!

After a day in my room, I had had enough of those four walls.  Dale and Matt helped me into the living room, and used a blue plastic tote to make an ottoman for my leg.  After sitting there for about 15 minutes, I was tired, and they got me back to bed without complaining.  I wanted to sit in my recliner so bad, but I knew that I couldn't get out of it, so I just looked at it longingly.  By the next day, sitting or lying in my bed was very uncomfortable, and all I could do was cry.  Dale ordered me to my recliner and said that we would figure out how to get me out of it when the time came.  I discovered within a couple of minutes that my recliner is a little piece of heaven!

As of today, I am living in my recliner!  I'm even sleeping there, because I can't find a comfortable position for my leg when I'm lying down.  And Dale and I worked out a system for getting me out of the chair when the need arises.  Once again, I am grateful for my dear husband.  But you may be wondering where the humility fits into all of this.  Well, believe me, I've had to swallow a very large piece of humble pie.  Despite my disabilities, I have always prided myself on being pretty independent.  Now, I can't even get a drink of water if I want one.

I have to have someone help me up every time I need to use the bathroom.  I have to depend on someone to bring me something to eat if I'm hungry and something to drink if I'm thirsty.  I hate having to ask someone for help!  It has never been easy for me, and I am so used to taking care of things by myself.   I feel horrible about asking Dale to get up in the middle of the night to help me get out of the recliner so that I can use the bathroom.

But one of the blessings from having to do this, is that I am learning that my family loves me just as much as I love them.  I am learning that they are willing to do just about anything for me.  I am learning that I don't have to always be the strong one around here.  The rest of my family is willing and able to carry some of the burden that I have insisted on carrying.  I have learned to approach my life with a sense of gratitude, and I am learning that sometimes we have to humble ourselves in order to learn that we are loved and cared for.

I'm Having Surgery

I wanted to let everyone know who reads my blog that I am having surgery tomorrow to repair a torn meniscus in my right knee.  I have to be at the hospital at 6 am tomorrow morning.  This will be arthroscopic surgery, which is less invasive than other types of surgery.  I have a few butterflies still, but for the most part, I'm feeling very calm about the whole thing, and I am ready to get it over and done with.  My husband, Dale, and my son Matt will be with me, and that makes me feel much better about everything.

I've had a total of ten surgeries on my right knee over the years, so I know what to expect, although this is the first time that I've had the left knee operated on.  The thing that is scaring me the most about this is the recovery.  Because of the number of surgeries I have had on the other knee, it isn't very strong anymore.  In fact, I know that I am going to eventually have to have that knee replaced.  I also know that I'm going to be on crutches for awhile.  I'm praying that my right knee is strong enough to handle the additional stress that I'm going to be putting on it.

And speaking of crutches, I hate them with a passion!  At one point in my life, I was on them for approximately 6 months.  I developed callouses on my palms, and my underarms and back hurt all the time.  I won't be on them for nearly that long this time, but then, I hadn't had back surgery at that point in time either.  Is my back going to be able to handle this?  All I know is that I want to be back on my feet as soon as possible!

Because of the surgery, it may be a little while before I am able to post anything again.  Please don't forget about me!  I will be back, and I'm sure that I'll have a lot to say.  I want you to know that starting this blog has been such a blessing for me.  It has given me an outlet to talk about the things that I am going through in learning to live with chronic pain, and I hope that some of my insights are helpful to you as well.  I think that it's important that we learn to reach out to people, and starting this blog was one way for me to reach out.  The comments that I have gotten back from some of you have really touched my heart, and it means the world to me.

Tonight, we go to Louisville for Matthew's awards banquet for the Yarmouth Book Prize.  I probably already told you about this, so if you've heard it before, please bear with me.  I am a very proud mama!  Matt was one of 35 high school juniors in Kentucky and Southern Indiana to receive this award.  Tonight, we go to the official banquet and awards ceremony, and we couldn't be happier for him.  I'll also let you know how that went, as soon as I am able.

Please keep me and my family in your thoughts and prayers tomorrow.  This is a relatively minor procedure, but I am a firm believer in the power of prayer, and knowing that you are praying for me gives me strength and a sense of peace.  And, as Arnold said many years ago, "Ah'll be baaack!"

Another Kind of Pain

I read today that the suicide rate for people living with chronic pain is five times higher than that of people in general.  Five time higher!  Those of us who live with this condition know what an emotional battle we face on a daily basis.  When you live with pain day in and day out, it almost invariably leads to depression.  And, for many, the battle with the pain, and the depression, becomes too much.  Where is the outrage in this country?  If  another population was committing suicide at this rate, we would certainly be aware of it.  We would be trying to find out why this particular group of people was prone to suicide, and we would be holding a walk or something to try and help bring awareness to the condition.

However, chronic pain sufferers don't need a study to understand why this goes on.  We know that the emotional pain of this condition is often worse than the physical pain.  We know the feelings of hopelessness when doctor after doctor tells us that they don't know what is wrong with us.  We know the feelings of being alone because our friends and family have no idea what we live with.  We know the desperation of not being able to find anything to relieve the pain, even for a short period of time.  We know the loneliness when family and friends turn their backs on us because they either don't know what to do for us, or they are just tired of trying.

It really doesn't surprise me that the suicide rate is so high for us.  One thing that must be stressed is that depression is not the cause of our pain.  Our pain is the cause of our depression.  And that depression is just as real, and as devastating, as the pain itself.  It is so important that we recognize that depression can and should be treated.  It is a medical condition and as such can be managed.  Unfortunately, our society continues to look down its nose at anything considered a "mental illness".  It's time that we get over that outdated idea.

If you are dealing with depression, it is so important that you reach out and ask for help.  I suffer from chronic depression, and I'm not ashamed to admit it.  For years, my depression was kept in check with a combination of medication and talk therapy.  But when I started living with chronic pain, I discovered a completely new low for my depression.  I dealt with friends and medical personnel alike who didn't understand what I was living with.  I was told to "get over it" and stop whining.  I felt alone and abandoned, and I really thought that I was the only one living this way.

Thank God for Facebook!  It was through Facebook that I learned that not only was I not alone, but there were thousand of people out there facing the very same things I was facing.  I developed a network of support.  I had people who understood exactly what I was going through.  I made friends who were ready to hold me up when the pain, both physical and emotional, became too great for me to bear alone.  And I was able to offer that same support to others.  And finding these fellow sufferers gave me something that I hadn't had in such a long time - hope.

The suicide rate for those of us suffering from chronic pain may be five times the national average, but we aren't alone.  It is so important to reach out and ask for help.  Finding others who truly understand what you are going through is more important than I can stress.  Knowing that I am not alone has done so much to help lift me out of that depression.  And I hope and pray that you are able to find that support for yourself.  You are not alone, and there is hope.

Acceptance

How many of those of us with chronic pain have truly accepted our condition?  How many of us have accepted the fact that this condition is probably going to be with us for the rest of our lives?  How many of us have come to terms with the fact that many of our friends and family will never understand what we deal with day in and day out?  If you are like me, then you can probably agree that you haven't reached a place of acceptance.

Intellectually, I know that I am probably going to deal with chronic pain for the rest of my life.  My back isn't going to get better.  My fibro isn't going to magically disappear.  My knees will never go back to normal.  And yet, I keep thinking that something is going to come along and make me better.  I keep going from doctor to doctor in the hopes that the next one is going to have that magic bullet that is going to take the pain away.  I truly haven't accepted the fact that this is my lot in life.  I keep hoping that I am going to wake up one of these days and feel like I did before the pain arrived.

If you are like me, you probably think that by accepting what is going on with our bodies, it means that you are giving up hope.  Sometimes, I feel that if I accept this condition, I will go downhill so fast that I will be bed ridden for the rest of my life, and I'm only 49!  I'm not ready to even contemplate that possibility.  I don't want to be an invalid, and I'm sure you don't want to be one either.  This is something that I worry about quite a lot, and it scares me almost more than the pain itself.

Recently, however, I've been giving a lot of thought to acceptance of my condition.  Does accepting that this is the way it's going to be really mean that I'm giving up?  The answer that I am coming to, for me at least, is no. No, it doesn't mean that I am giving up.  No, it doesn't mean that I am going to quit looking for a less painful life.  No, it doesn't mean that I am going to quit praying for a cure for fibromyalgia.  Accepting my condition simply means that I quit fighting.

Have you ever noticed that when you have a fight with your spouse or kids, that the stress from that fight makes everything seem worse?  It increases your pain levels and destroys your mood.  It creates tension in your mind and body.  And once you get past the argument and make up, you immediately start to feel better.  What if, by accepting what is going on with our bodies, we lessen some of the pain caused by our illnesses?  Personally, this theory makes a lot of sense to me.  Of course, it is much easier said than done.

I am trying to come to a place of acceptance with many things in my life, and it seems to be helping.  I once had a therapist tell me that acceptance doesn't mean approval.  It doesn't mean that you are rolling over and allowing things to steamroll you.  It simply means that you have come to a place of peace in your life.  I have been able to accept the fact that some people are never going to understand chronic pain or fibromyalgia.  I can spend all my time worrying about this, and fighting to try and make them understand what I'm going through, or I can simply accept the fact that there is nothing I can do to change their thinking.  I am learning that by accepting this, I am actually lessening my stress levels.  The problem becomes theirs once again, instead of mine.

Accepting that the pain is here to stay is much harder for me, however.  But I'm trying to accept that this is what is happening to me in the present.  It doesn't mean that this will also be my future, but for now, this is what I have to live with.  I believe that if I can come to a place of acceptance now, it will lower the stress and tension I feel.  If I can let go of that stress and tension in my mind, I believe that it will begin to leave my body as well.  And we all know that when you relax a tensed muscle, you experience relief.  Wouldn't it be wonderful if we could lose some of the tension we carry around?

Learning to accept this condition isn't easy, and at times, it seems counter-intuitive.  However, for me, it just makes a lot of sense.  I'm trying to stop fighting it, and learn to live with it.  I am learning to listen to my body and only do those things which are possible for me.  I am trying to lessen the amount of tension that I feel day in and day out.  And I hope that you are able to let go of some of the stress that you carry around, and that you are able to find some peace in acceptance.

Pity Party - Table for One!

The last couple of days have really been rough for me.  My pain levels are up, and my sleep levels are down, which is never a good combination.  I've also spent the last couple of days crying for no apparent reason, and I was starting to think that I was losing my mind.  Now, I have good news and bad news.  The good news is I think I finally figured out why I keep having these crying jags, and that bad news is that you can't lose your mind when you already lost it years ago!

As many of you know, I am having knee surgery in the next week or so.  I severely tore my meniscus and I have to have it repaired.  I knew I would need surgery before I even saw the doctor because I have been down this road many times with my right knee.  Because this is nothing new to me, I just assumed that it wasn't that big of a deal. I was calm in the doctor's office.  I was very matter of fact talking about the procedure.  And I kept telling others, and myself, that I wasn't worried about it in the least.  However, my subconscious mind apparently is worried about the whole thing, and I think that's the cause of the crying and lack of sleep.

A little while ago, I decided to go take a hot bath to try and ease my back a little.  As I sat there in the steamy water, all I could do was cry.  Pity part, table for one!  I was feeling completely sorry for myself, and even crowned myself Queen of the Martyrs.  I decided that there was absolutely no possible way that I could have the surgery.  I decided that my family would completely fall apart if I wasn't able to do everything that I normally do.  I convinced myself that I wouldn't be able to get into my house after the surgery, due to three little steps.  Because we are on a very tight budget, I made up my mind that there was no way we could afford the co-pay for my physical therapy.  I made up my mind that I was going to get out of the tub, and immediately call  the doctor, thank him for his time, and cancel everything.

I walked out of the bathroom, sat down in my recliner, and immediately burst into tears - not the pretty kind, but, as Oprah calls it, Ugly Crying.  Once I finally got to the sniffling stage, I announced to my husband that I was not going to have the surgery.  He calming asked me to explain why I had come to this decision.  And I began to lay out my reasons.  Dale listened to everything I had to say, and when I was finished, he promptly shot down every argument that I had come up with.  He had already arranged for our friend Dennis to help with the errands and getting me back and forth to therapy.  He told me that we were going to practice getting up the steps with crutches before the surgery so that I had it down.  And he told me that we would find the money for the physical therapy because not having the surgery simply was not an option.

Once we finished talking, I got up and left my pity party table.  I stopped crying, and I felt like the weight of the world had been lifted off  my shoulders.  I called the surgeons office and they told me they would have a definite date and time for me this afternoon.  And then I called the physical therapy office I want to use.  They are going to run my insurance now to see what that will cover and what my out of pocket will be.  They are also going to work with me on the out of pocket part.  I'm hoping that getting all of this out of my system is what I needed to do.  I hope that I'm going to be able to sleep tonight.  And, for the time being, I hope there are no more openings at the Pity Party!

Self Protection

One of the sad truths about dealing with a chronic pain condition is that those we love the most quite often don't understand anything about our condition.  And, no matter how hard we try to educate them about the things we are living with, they refuse to accept what we are saying as the truth.  They tell us that we are making our condition worse by not exercising every single day, when some days, just walking to the bathroom is all the exercise we are able to handle.  They tell us that anyone taking that many pills a day has to have a drug problem, and that we should probably go to rehab.  We try to explain that our doctor knows everything we are taking, and would never prescribe meds just for the fun of it.  But these explanations seem to fall on deaf ears.

This is one of the most painful parts in dealing with chronic pain.  When we were first diagnosed, these loved ones were often at our sides, offering love and support.  But like most people, there is an assumption that a doctor is going to cure you.  You may be sick for a while, however, it is assumed that you will eventually get well.  Unfortunately, most of us with a chronic pain condition will never get better.  We learn to live with the condition as best we can, be we have to accept the fact that it is always going to be with us.  It is a long, hard fought battle with ourselves, but eventually, we have to come to terms with it, or go crazy fighting it.

For those who love us, that acceptance is harder to come by.  They aren't the ones experiencing the pain and they don't have any conception of how severe it is.  Quite often, my sons will give me a high five for something they've done.  They know not to hit my hand very hard, but sometimes they forget.  The pain will shoot from my hand, straight into my shoulder and it stays there for hours.  When I say "Ouch!" or rub my arm, they look at me like I have lost my mind.  They can't imagine that something like that could possibly hurt because they have no frame of reference for that kind of pain.  I think it is the same for many of our family member's.  They have no concept of unending pain, and it's hard to accept that we are actually feeling the things we do.  And quite often, nothing we do or say can change their minds.

Quite often, our family members are just as frustrated about our conditions as we are, but in different ways.  We have all experienced wanting to help someone we love when they are sick, or in some type of pain - be it physical of emotional.  Our family member's watch us suffer day after day, and they want to do something to help us, but nothing they do works.  Because they can't help, they often feel frustrated, helpless, and yes, angry.  They aren't really angry with us, but quite often, they turn those feelings on us.  They are really angry about the situation, and the fact that there is nothing they can do about it.  I can tell that my husband feels that way sometimes, and I try to make him feel better by reminding him that my illness is not a reflection on him.  I tell him that by just being there, and listening to me without judging, is more help than he can ever know.

And then, there is the medication issue.  Many of us who suffer from chronic illnesses, including chronic pain, quite often take handfuls of medication two or three times a day.  This certainly isn't the norm.  Most people only take medication when they're sick or they have a headache.  If we were diabetics and took insulin shots several times a day, it would be far easier for our family member's to understand our need for that particular medication.  I have high blood pressure, and no one bats an eye at my taking that medication every day.  But, as sufferers of chronic pain, many of us are taking narcotics several times a day.

There is a lot in the news lately about drug addicts running from doctor to doctor to get their narcotic fix.  There are shows about forcing drug addicts into rehab.  Our loved ones hear the news reports and watch the intervention shows, and then they see us swallowing our multitude of pills every day.  I can understand why they are worried about us.  We try to explain to them that we need these pills simply to be able to function.  We try to explain that we are not "doctor shopping", and that everything we take is prescribed by the same doctor every single time.  We try to explain that our doctor's wouldn't give us these medications if we didn't truly need them.  But so often, our words go in one ear and out the other.  This can turn into a vicious circle which hurts all parties involved.

If possible, include your loved one in your treatment.  Take them to your doctor appointments so that they can ask questions about what it going on with you.  Many times, family members can hear the doctor say the exact same things we have told them, but they accept it more easily when it comes from a medical professional.  Unfortunately, this doesn't always work.  There are times when a certain family member will start in on me about my drugs and lack of activity, and I simply tell them thank you for the concern and try to change the subject.  I refuse to discuss my medical care or condition with them.  I do tell them, however, that whether or not they understand what's going on with me, I still need their love and support.

With some loved ones, none of this works.  These people constantly berate us about why we aren't getting better, and why we have to take so much medication.  We try explaining things to them.  We try ignoring them.  And we finally realize that none of this is working.  It is at this time that we have to decide if a relationship with this person is worth all the pain they are causing us.  If the answer is yes, we have to figure out a way to ignore the things they are saying in order to continue having a relationship with them.  But, if the answer is no, it may be necessary to distance yourself from this person.  We have to take care of ourselves emotionally, as well as physically.  If the pain becomes too much to bear, you must back away from the source of that pain.

I know how hard this can be.  I have had to end relationships with a couple of friends because they were constantly telling me that I obviously had a drug problem, because no one could take the amount of medication I took, and not become addicted.  I did everything I could think of to try and explain my condition, and the treatment my doctor was giving me.  But nothing worked.  In the end, I had to decide if staying in the relationship was worth the pain that it was causing me, and the answer was no.  It was hard at first, but in the end, it was the right thing to do.  If you are dealing with a relationship which has become toxic, you have to look into your heart and decide if you need that in your life right now.  And know that whatever decision you come to, it is the right decision for you.

Looking for that Silver Lining

Those of us who suffer from chronic pain, or any other chronic illness, can frequently get trapped into feeling sorry for ourselves.  I know that it happens to me quite often.  And who can blame us for feeling this way?  When you suffer from pain every single day of your life, and every doctor you see tells you there is nothing they can do to help you, it's only natural to experience some depression.  On top of that, we deal with people telling us that we are lazy hypochondriacs.  And then there are the doctors and pharmacists who are convinced that we are crazed drug addicts.  I would be more shocked to hear that someone with this condition wasn't at least a little depressed.

I'm trying to make some changes in my attitude.  I have decided to start looking for that cloud with the silver lining, instead of  always seeing the multitude of dark clouds.  I have decided that I'm not going to listen to those who don't understand me or the things that I live with.  I am responsible for the way I feel, and when I allow others to make me feel worthless, I have to own that.  If I allow someone to make me feel bad about myself, I'm giving them power over me.  I don't want to do that anymore.  Does it really matter if someone doesn't believe me when I tell them about the pain I am experiencing?  Does it really matter if they believe that going out and taking a walk will cure everything that's wrong with me?  No, it doesn't!

Recently, one of my boys got furious with one of his brothers because he called him stupid.  Jack was throwing a fit and threatening to kill Matthew.  I looked at Jack and asked him if he was stupid, and he stared at me, and then grudgingly answered, "NO!".  And then I told him that if he isn't stupid, why should it bother him if his brother claimed that he was.  I told him that it shouldn't matter what his brother thinks, so long as he knows who he is.  I explained that if he gets angry, he is giving his brother the power to control the way he feels.  And then the light bulb went off over my head!  I realized that I was giving others power over me, based on the things they said to me.  So long as I know the truth, then it really doesn't matter what other people think.

Today, I learned that I'm going to have to have knee surgery.  My first reaction was, "Well, here's one more thing to add on the bad pile!  More pain, more inconvenience, more to deal with!".  And then, I stopped myself.  I thought that I have been dealing with this horrible pain in my knee for the last year and a half.  I have complained about the fact that nothing was working to make it feel any better.  Why am I complaining now that someone is finally listening to me, and is going to do something to fix it?  So, this knee surgery is an unexpected silver lining!  Sometimes, it's hard to see the silver lining in many of the things that we have to deal with.  That's why we have to keep our eyes open, because we might miss that little glint of silver in the middle of the storm.