I’m Normal…?

The more I experience crises, pain, times of stress, super-fun things that happen, the more I’m thankful for my brain’s ability to shut itself down for a while.  Not all the way down, exactly.  I still have the ability to get out of bed and make myself socially acceptable.  I can even vacuum and make more than a frozen pizza for dinner.  More than basic functioning becomes not possible.  It’s not stressful or anything, my brain just blissfully stamps “return to sender” on any piece of information coming in that it doesn’t want to handle.

The last few days has had “return to sender” stamped all over itself.  To catch up, read (https://sistertwo.wordpress.com/2013/06/30/chronic-pain-ebbs-and-flows-and-hope/ ).

If gorgeous weather is calling your name and you would rather NOT take the time to read the above, the tiny version is that I have chronic pain, have done a bazillion tests, all of which have come back normal, and was finally scheduled for an MRI, hoping that something would show up that would give us some answers as to why periodically my lower back and legs feel like the bones are melting.

This was the very last test that could be run.  It was the last hope for medical answers.  I really, really, really wanted something to show up.

It didn’t.  I’m normal.

I’ll skip all the fun stories about the MRI (note to any non-morning people though…getting an hour-long MRI at 7:00 in the morning is NOT the way to ease into your day), except to say that my 23rd IV went in on the second try.  Woohoo!

I went in for my test results the next day and the doctor who I was hoping would be amazing and  a “let’s stick together until we get this figured out” told me that everything was beautiful and wonderful and that she was done seeing me.

The entire appointment could be summed up in the following bits of conversation:

Her:  Your MRI is perfect.  There is no nerve damage and nothing to explain why you are in pain.

Me:  Oh.  Wow.  That’s not what I was hoping for at all.

Her:  I don’t understand why you are upset.  I could have told you that you have a degenerative disk disease.  Everything is normal.

Me:  I am grateful that there is no huge disease showing up.  I really am.

Her:  Right.  There is nothing wrong with you.

Me:  Well, no.  There is something wrong with me.  We just can’t find out what.  That’s why I’m frustrated.

Her:  I don’t know what to tell you.

At this point in the appointment, I was holding back tears.  I don’t always love taking Jake, my hyperactive four-year old, to my appointments, but in this case, watching him try to bend himself backwards through the arms of the chair helped me to smile and not be so shaky about the whole thing.

I left with no answers, no recommendations, no follow-up, no plan for what is next.

That’s about the time my brain shut down and started to hibernate.

Now that my brain has crawled out of it’s den and decided to be friends with me again, I’ve figured out some stuff.

First of all, I’m frustrated.  I so wanted this to be the appointment where we figured some crap out.  I really want to know what is wrong with me, how to manage it, and how to live with less pain.  I’m not even asking for no pain.  Just less, for crying out loud.

Second of all, I’m sad.  She did tell me that I have arthritis in my lower back.  It’s pretty normal for people in their forties to have arthritis, so I’m just a few years ahead of the game.  I know that arthritis is something everyone, pretty much, has to deal with.  I’m not in any pain from the arthritis yet.  But, knowing that yet another thing has malfunctioned in my body is just too much right now.

Third of all, I’m angry!  I mean, come on!  Is it too much to ask for one freaking doctor to want to stick with me until we figure this out?  Why are narcotics and brain-numbing neurologicals the only answer?  And, a stupid answer at best!  I hate taking drugs.  I don’t even know if the way that I’m taking them is the best thing!  Whenever I ask my pain specialist about the theory of pain and narcotic interaction, he says that his guess is as good as mine. Seriously?!  You went to smarty-pants school for 100 years, whereas I have a degree in music.  My guess cannot possibly be as good as yours!  Pardon me while my head catches on fire and I go run a few laps to calm down.

Finally, I feel lost.  I mean, what now?  Do I go to the University of Colorado with my nonexistent cash and try to get more answers out of perfect test results?  Is driving hours and hours and spending money we don’t have and time that could be well served in other places worth getting probably the same answers as before?  Or, will they be like every other doctor I’ve seen so far?

I have one last slim hope of some help, or at least encouragement that I’m not weird or insane.

The one common thread that runs throughout all of my medical problems is cancer and chemotherapy.  The fact that I had cancer at 25 shows that my immune system, which should have been able to take care of those tiny little malfunctioning cells that cost me my breasts, my hair, and my health, totally failed me.  So, it stands to reason that that same immune system is having a hard time taking care of other strange and wonderful things running around in my body.  Chemotherapy, which poisons any fast-growing cells, apparently did my body no favors.  I have had a lot of really strange things happen since I was chemo’d until the cancer gave up the fight.

In fact, the very thing I’m dealing with in my chronic pain, seems to be a very common problem among cancer survivors.  A sweet friend of mine did a basic internet search for cancer and chronic pain and came back with some pretty legitimate studies showing a fairly high rate of unexplainable pain in cancer survivors, specifically women.  In fact, the doctor I saw the other day mentioned that she is seeing a breast cancer survivor who has unexplained pain similar to my own.

Maybe those studies will lead to something.  Maybe UC Denver will be a place that can help.

Maybe chocolate, wine, long runs, and massages really are the answer to all my problems.

At this point, if you know and love me, you are probably worried about me.  I promise that I’m doing okay.  I’m dealing with a lot of disappointment, frustration, and the sudden desire to go to the batting cages and hit things really hard with sticks.  This isn’t keeping me up at night.  It’s not making me depressed.  It’s not making me want to go live in a tree somewhere.  I’ll pull out of this, figure out what’s next, and head in that direction.

In the meantime, I’m going to pretend that my doctor told me that chocolate, wine, long runs and massages are the answer to my problems.  You just can’t go wrong with that!

P.S.  I’m also not an alcoholic.  😉

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4 Responses to I’m Normal…?

  1. Catherine says:

    so you don’t think a music degree makes you a medical genius? I remember wanting to scream at doctors who wanted me to make decisions about my breast cancer. I finally told one of them that I HOPED he knew more than I did! Love you so much! I think chocolate, long runs, wine and massages just could be the answer!

    • I HOPE a music degree doesn’t make me a medical genius. 🙂 There are days though that I wonder if I haven’t gotten a medical degree by proximity. I’m going to proceed as if the fun things are what the doctors told me to do. You never know, it might help. Love you!

  2. Charlene Young Griffith says:

    Dear Mary, I too have heard that some cancer survivors have chronic pain and my heart goes out to you. By the way, I recently ran my first half marathon and surprisingly did ok but I prefer riding a bicycle. Hang in there and I care about you. Char Griffith

  3. leitis23 says:

    Mary,
    Wow, I swear I have lived this exact same experience…many times. I can’t tell you how many times a doctor has run a test, gotten normal results, and then shooed me out of their office with no more than a shrug. Man, I feel your pain. Probably literally. I have been fighting with chronic pain and a mystery illness for over seven years…it started in my twenties! The deeper I go into the medical system the more I realize that the doctors really are just practicing. If it doesn’t fit neatly into one of their buckets they have no clue and the vast majority of them also don’t care, which was both a shock and rather devastating. Hang in there. The Universities do tend to have doctors that are more interested in a mystery, I have had my best luck with them, so if you can do it, I would recommend it.
    All the best
    Kristen

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