Sunday, May 13, 2012

A New Pain Specialist

Oh my god!  Okay...

I met with a new pain specialist on Friday.  He spent 45 minutes with me, talked with me, and (most importantly) heard me.  We went over my entire history; my injuries, tests, doctors, treatments,... 

I told him how scary it was going to new doctors because I'm so afraid of not being believed or of being seen as someone who's simply looking for drugs.  He reassured me and calmed me down and pointed out that I had a long (and recorded) history of pain, doctors, and treatment.  That it wasn't as if I just walked in off the street, claiming to suddenly be in agony, and demanding drugs.

He asked about my most recent pain doctor's recommended treatment.  I explained that he started me on the nerve blocker (which, honestly, I'm not sure how much/if it helps at this point) and had gotten me physical therapy (which helped a lot.)  The problem, though, was that my pain and fatigue have reached the point that I was incapable of doing it.  And that particular doctor didn't believe in painkillers.  While I truly believe he was doing what he thought best, painkillers are – like it or not – an integral part of my pain management.  And his refusal to see that need made it impossible for me to stay with him as I've been here a year and a half and not had painkillers in that time other than a couple of months worth that my doctor back home prescribed me.  So, as kind as my most recent specialist was, he wasn't willing to discuss painkillers.  Whereas pain doctors before him hadn't even thoroughly explained my diagnoses and simply chucked drugs at me.  And I want a happy medium.  I need a happy medium. 

So, even though I was terrified and nervous, I was completely honest and totally advocated for myself!  I told him that I'd been given a few Lortab and I'd taken them the day before and they helped so much.  In the past I'd been put on everything from Fentanyl to Morphine and the only thing that had given me any relief at all was Vicodin.  It hadn't really helped a fully but it was something and it had been so hard to find medication that even worked at all I was afraid to keep trying.  So I just took the Vicodin and decided it was the most help I was capable of receiving.  But the Lortab was different. 

I took them and I was able to bend down to scrub the toilet!  I was able to stand up long enough to cook dinner!  I was able to vacuum!  I was able to do these things without screaming in pain!  And I almost started crying in that exam room because, for the first time in years, I remembered what it felt like to not be in agony.

He told me that his job was to be a part of my pain management.  To work with physical therapy, exercise, and mental health professionals to help me manage and survive my pain.  He also said that he's been working with fibromyalgia patients for 20 years and strongly suggests those patients see psychiatrists and therapists because it makes sense to be struggling emotionally.

“You have an illness.  It's painful and crippling.  It can't be seen.  Many people don't even believe it exists.  It's not curable.  And it will, possibly, last for the rest of your life.  And that is DEPRESSING.  You're allowed to be upset because of it!”

We discussed painkiller options and he thoroughly explained the problems with their excessive Tylenol contents and why that is the reason to be wary of them in high doses.  But he said if I felt I could live on four Lortab a day, he was completely comfortable prescribing that.  But I had to tell him if the pain was still unmanageable on that many so we could try something else.  That if something doesn't work, he needs to know.  I told him I definitely wanted to try the Lortab and see how my body reacted to them.  He also prescribed me a muscle relaxant and we'd continue on with the nerve blocker.

He heard me and respected me.  And!  He said he was comfortable with giving me a refill and seeing me every other month if those drugs worked so it would save me money on co-pays.  He was awesome.  Absolutely awesome.

Yesterday I took them.  And, oh my god, I kicked ass!  I cooked!  I attacked the house – emptying and cleaning out all the cupboards and drawers in the kitchen and the bathroom.  I washed all the towels crammed in the back of said cupboards.  I filled numerous boxes with donations and four bags with trash.  I did things I've needed to do for over a year.  I was able to do in a day than I'd been able to do in the last six months combined.  Every time I lay down to rest, I jumped back up and did more.  In addition to greatly lessening my pain, it increased my energy.  By the end of the day my body was sore and aching from activity and exertion instead of the blanket pain I'm always used to.  I woke up this morning with sore legs from running around the house and standing; feeling worn out from kicking ass yesterday.  And it feels amazing.  But it also makes me realize that I need to pace myself because I'm not sure what my body can actually handle these days!

I just feel hopeful about my body and my health for the first time in years.  I'm going to be able to do my physical therapy and work out.  I'm going to be able to see friends and socialize.  I'm going to be able to leave the house.

I feel alive.  I feel optimistic.  I feel capable.  I feel human.

17 comments:

  1. Vicodin and Lortab are the same exact thing (hydrocodone/acetaminophen), fyi.

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    1. Oh I know. I can't explain why they impact me differently but they do so I'm not going to complain!

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    2. Lortab has twice as much hydrocodone as Vicodin, so you don't have to take double the acetaminophen if you double up on the Vicodin.

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  2. Yay for drugs that work and doctors who listen!

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    1. Definitely! It's sad how rare the latter is!!

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  3. O, finally! I'm so glad you were able to finally get the help you deserve.

    he's been working with fibromyalgia patients for 20 years and strongly suggests those patients see psychiatrists and therapists because it makes sense to be struggling emotionally.

    “You have an illness. It's painful and crippling. It can't be seen. Many people don't even believe it exists. It's not curable. And it will, possibly, last for the rest of your life. And that is DEPRESSING. You're allowed to be upset because of it!”


    This was so good for me to read. THANK YOU, Heidi!

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  4. Have you checked unfuckyourhabitat.tumblr.com? I've been using it to help me manage my home while dealing with depression/kids. It's really, really helpful for pacing and motivation, and they love to re-blog success stories.

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    1. I have, actually! A few people recommended it on twitter. What I haven't mentioned is that the mess and all the stuff I have to clean/deal with is shit my former roommate abandoned over a year ago. So once I get that hauled away, I should be fine in terms of keeping my space clean. Hopefully!

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  5. Hallelujah! I am so pleased for you - it's always a revelation when you finally meet someone willing to give you a shot; that doesn't pre-judge and that (most of all) listens! I have the same with my current counsellor and have been feeling similar effects to you after our sessions. I have seen changes in myself I never thought possible!

    Good luck .. and do pace yourself - we don't want you overdoing it too soon! :-)

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  6. So glad that he listened to you and you were able to advocate for yourself. And that you are feeling better! That's excellent!

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  7. Yay! I'm so glad to hear the good news! My boyfriend has fibromyalgia and vicodin has been the only thing that has helped him. We'll talk to his doctor about Lortab and see what she thinks. None of the pain specialists he's been referred to have accepted his insurance.

    I was also going to ask you if you've come across any resources for coping with the medicare gap. My boyfriend is spending almost all his social security each month on his medications and it looks like he'll be in the gap until November, at least.

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    1. God, I'm so sorry to hear that. I've lucked out in finding specialists that accept it and have only had to deal with a $160 deductible + a $20 copay + 20% of test/treatment costs. Has he received any help from Medicaid?

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    2. He gets too much money from his SSDI to qualify for Medicaid which is a shame because when he was on Medicaid before it was fucking awesome.

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  8. So so so so so so SO happy for you, Heidi. You deserve a good, stable, happy life (with minimal pain! and lots of good food and people and things to do/places to see <3).

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  9. Lortab and Vicodin are the exact same drug. Different manufacturer but all hydrocodone.

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    1. I know. But one effects me differently than the other for some reason so yay for that!

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  10. You might ask about Norco. I've had major back problems over the last year (bulging disc that was pinching a nerve, S-I joint inflammation, blah blah), and my pain management doctor switched me from Lortab to Norco. It's the same medication, basically (like Vicodin), but has a lower acetaminophen dose. Taking it with 800 mg of Ibuprofen a couple times a day really increased the effects. I know everyone is different, but that's just something to think about.

    But I'm so glad you found a doctor who listened. That makes all the difference. And the good news is, since it's available as a very common generic, it's pretty cheap.

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