That’s a big job…who says I don’t work?

I went for my two-week post-op appointment yesterday.  The doctor walked into the room shaking his head.  He was still amazed at the extent of the adhesions.  I asked if I have what they considered a “frozen abdomen” (already knowing the answer) and he said “no, honey, yours is more like “Ice Age abdomen” with a big nervous smile on his face.  I am convinced that he still can’t believe that we made it through surgery without any serious complications.  It probably had something to do with Dr. L telling him he was a crazy SOB for even trying to operate on me…who knows?  Have I mentioned I love my doctor?  Who else could tell you ‘no, it’s much, much, much worse than that’ in such a nice way?  He makes me laugh.

So while I was there we discussed the Mayo Clinic’s Pain Rehabilitation Program. I told him that I was looking at my options of whether or not to try the “übersurgeons” otherwise known as specialists in adhesion removal (but ‘übersurgeon’ is so much more fun to say :)) or whether to manage the pain.  Pain management can be broken down into two categories: narcotics or sans narcotics.

So far (going on 3 years now) the “pain management” route hasn’t quite been cutting it for me.  I have done physical therapy (which actually does help a little (a very little) with the pain but improves my strength and improves my fatigue (meaning that I can do more than take a shower before I feel like I’m gonna pass out from exhaustion).  My first nerve block actually had nothing to do with my adhesions.  A week before my first appointment with the pain management doctor I broke my butt.  I know you’re supposed to say tailbone but screw tailbone.  Your butt is completely useless.  I mean, the most common thing I do with my butt is SIT ON IT and that is completely impossible without excruciating pain until it heals or you have medical intervention in the form of a nerve block.  That particular block worked like a dream!  By the time I woke up from sedation I was sitting up (still don’t know how the nurses managed that one, but ok) and was automatically like “wow, M-, I’m not hurting” and then I tried to stand up and sit back down to check, but someone grabbed me (I don’t remember who…geez I had just woke up) and told me it might not be a good idea to stand up yet…and they were right.  However, when I fell back into the chair (which should have hurt like hell) nothing hurt.  Complete success.  My second procedure was a SI joint injection.  Did it work? Nope.  The third was a hydrogastric plexus block.  It helped for about a month.  I had more energy and was more active in that month than I have been in years. I definitely wasn’t 100% but I have never asked for 100%…I just want a piece of my old life back and that was the closest I have come so far.  The fourth was another HGP block and I got maybe two weeks out of it, but it wasn’t like with the first one.  It didn’t reduce the pain as much.  The fifth was a radio frequency (RF) treatment where they “shock” the nerves.  They claimed I would get 6 months pain relief with that one…never happened.  Not one day.  I have also of course tried the pregabalin and other non narcotic pain relievers and of course the narcotics.  I have a love/hate relationship with them.  I love that they take the edge off of the pain, I hate the “fuzzy” “not quite there” confused feeling they cause as a side effect.

So, looking for sans narcotics options, well there aren’t many.  But the one that I have found and have talked to one of their “graduates” and seems to have a very high success rate is the Pain Rehabilitation Program at the Mayo Clinic.  Basically, they “take a behavioral therapy approach” in teaching you how to cope with your pain.  Some of the components of what they teach is: relaxation techniques including mindfulness; physical therapy (exercise); occupational therapy; nutrition; biofeedback practices; and psychological counseling.  They also review your medications and if possible ween you off of or reduce your narcotics.  This would be a good thing to try because I have always said “if I could just have a piece of my life back” and giving me a clear head and fully functioning mind seems like a damn good place to start.  Well, you have to start somewhere.

Meanwhile, back at the doctor’s office, after a quick check, I was cleared to go ahead with my knee surgery ( Yay! Fun!  Can you hear the sarcasm?)  Seriously, though I am not worried about knee surgery a bit.  Piece of cake.  I also had the doctor talk to M- a little bit about chronic pain and the fatigue that tends to accompany it.  Oh, and also touch on the fact that I AM NOT A DRUG ADDICT!  I may be medically dependent, but there is a HUGE difference between that and addiction one key component being I DON’T GET HIGH OFF MY PAIN MEDS!  Does it seem that I am a little sensitive on this topic?  Well hell yes I am.  I don’t want to be taking the shit in the first place, so don’t turn around and insult me by saying the above statements.  Anyway, they talked.  When M- brought up the ever-popular statement “well I’m tired when I get home from work too” the doctor told him he was trying to compare apples to oranges.  He said ‘it’s not like Joy is looking for a ‘free ride’ or is being lazy. Chronic pain sucks your energy away. It eats at your emotions and affects you deep into your soul. It doesn’t matter if it is headaches or pelvic pain or back pain. You do tire faster and you do have to learn how to conserve energy.  Even just taking a shower can exhaust you.  The medication she takes does have side effects but doesn’t make her what you know as high.  It is just so that Joy can get up in the morning and not suffer all day. It doesn’t give her energy. She has to learn to work with what she has.’ (I didn’t use complete quotation marks because that is what he said to the best of my memory, possibly not in the correct order.  I mean, I didn’t go in there with a tape recorder or anything…hey I probably should have done that so that I could play it each time M- slips and says the wrong thing…nah.) Anyway after my doctor was so generous to take up clinic time to play couples counselor, M-and I still can’t talk about pain without him trying to compare it to his own pain or his pain tolerance being better than mine or ….  He claims that he did however get the part about the fatigue.

Geez.  I guess it really is all about what you want to believe.  And he can believe whatever he wants.  As long as he doesn’t say things that bother me and therefore get in my way.  I have too much to do right now.  I have to figure out how to live the rest of my life in the best way, most healthiest (yes I know you’re not supposed to use most and -est together but I want YOU to get my point!) way, and with the least amount of suffering possible.  That’s a big job…who says I don’t work?

 

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8 thoughts on “That’s a big job…who says I don’t work?

  1. Oh Joy, I so get you. That part about the narcotics and being a drug addict. That one really pisses me off. I’m like you, I wish I didn’t have to take it, in fact a few months ago, I took myself off the very potent pain patch they had me on because every time I told them I wanted off the narcotics they would say ok, now take this (narcotic) to ease the withdrawal symptoms. Each time it was a more powerful drug. I didn’t like the way it was starting to affect my speech (that whole story is a long one that almost killed me) so I tore the patch off, knowing full well that after being on narcotics for over 3 years that my body was most definitely going to go through some serious withdrawals ( worse than I could have ever imagined, like I said, almost killed me). When I finally got out of the hospital, after 10 days and 3 of those days being in the ICU when my BP dropped to 64/29, and of course, they tried to put me on a non narcotic pain medication. Ha Ha. Seriously? When your body is used to narcotics, nothing else works. I went back to my primary care doctor, instead of the pain clinic doctor that overdosed me (his words, not mine) not only once, but twice. I was suffering and told her that I thought I had made a huge mistake because I was now remembering the pain without the narcotics. No problem. Back on them and I need them to just take the edge off. I hate having to take them, but I am NOT a drug addict and I DO NOT get high off my medication. A lot of other doctors and especially the ER like to treat me like a drug seeker. Really? I already have plenty of narcotics at home, if I was just wanting to get high then I would be abusing my meds and taking more than prescribed, right? I don’t need to go to the ER to get high. And, that is only one very frustrating component of living with chronic pain. Hang in there, girl. I got your back. 🙂

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      • I don’t mean to sound so negative, but the answer is still NO. You’ll have to read my new post that I posted this morning then you’ll know the answer. I’ve been lying in one position, narcotics on board (of course), heating pad on, heating pad off. I take it off after awhile because it makes me so hot. I’ve eaten nothing. I’ve drank enough to swallow my meds, can’t get out of bed because this damn pain just won’t let up. This too, shall pass ( one of these damn days). So from one drug addict to another this day sucks. I hope you are feeling ok, don’t know how you could be, but I’ve been told anything’s possible. Hell, I’m a hot mess! I’ll still be responding to that last response or post, whatever it was, when I can type more than a few words at a time.

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        • Ok I just finished reading it. What I do when the pain is too much is A) try to sleep…you don’t hurt when you sleep. B) When sleep is not possible, I try to watch something crazy funny. Granted, it might hurt to laugh, but it hurts in a good way. C) I think you’re doing good trying to keep your mind busy on the computer. D) I’m out of suggestions. Tune in next week maybe I’ll have learned some more -hey, it’s possible! (I’ll copy this on that post just so it will be in both places.)

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          • Ok, well sleep ain’t happenin’. Now you would think being a drug addict and all that I would have no problem sleeping. LOL The tv has been off all day. I guess I could turn it on. My mom just called and she has her own business doing medical billing for psychologists, mental health providers. I’m currently on cobra which is 700.00/month which takes almost all my disability. She started talking about what’s going to happen after the first of the year and that I’ll probably have to go on Medicaid which doesn’t pay shit and I need the doctors I have. It took me years to get the team of doctors I now feel fit for me. I go to therapy 3 times a week. once is to a therapist that only works with me on the pain issues and the other one is twice a week to deal with everything else, and there’s a lot of everything else. I’ve been seeing these therapists for a long time, especially the one I see twice a week. The other one I’ve been seeing for over a year now. Without therapy there will be no me. Period. I need intensive out patient therapy. Been to the nut house a few times wanting to give up and not fight this fight any more. So, now I’m getting really anxious and more depressed than I already was. I feel the tears coming on. Shit! Maybe I won’t even be here next week. I can’t take too much more. Sorry, I just happened to be in the middle of this post when this conversation went down. I think I’ll just lay down and give up. To hell with it all, I’m tired………………………….

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          • Honey, it hurts me to the core to know that you’re hurting so much. Physically and emotionally. I’ve been there before myself and it is not a pretty place. I hope from the bottom of my heart that you hang around a little while longer. I have really enjoyed our conversations and I’m not ready for them to end yet…for you to end yet. Please just try to get some rest and for a little bit go somewhere else in your mind. You are one of the lucky ones who know how to do that (I WILL learn one day). Anyway, go somewhere else in your mind even if you can only go for 5 minutes. I really think what you need is rest and that will help you rest. i love you girl! You’re my adhesion sister and I expect to hear back from you tomorrow!!!

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  2. I love ya, too, girl. I’ll be back tomorrow. I’ve got a rice bag around my neck, the heating pad on my back and will rotate it to my abdomen about every 30 minutes. Then since I’m a drug addict, I have my drugs, and lets not forget the box of kleenex for my never ending tears. I’m a big cry baby. That’s all I can do………………………..
    Have a nice night.

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    • Yeah, I figure I will eat something for dinner and then take my drugs of choice…oh wait, I don’t choose them…anyway, I’ll take my drugs lol and go to bed too. You have a nice night also.

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