Drugs – They’re Such a Trip

I'm going through all sorts of head trips this week.

I really need your opinion and I hope you'll take the time to read through this whole post and then tell me what you think.

The reasons for my head trip(s) are many, but – in part – I'm blaming my new drugs.

Each week, for several weeks, I will be increasing my new (non-narcotic) medication until I get my body up to a full dose.  It's supposed to make the nerves in my bum arm/shoulder calm down and stop telling my brain, "Oh shit – I feel horrible pain AGAIN!"  Currently, my nerves do exactly that if anyone touches me or if I use my arm even the little bit I'm able.  I'm told this is a result of all the damage and trauma from the car accident along with those six horrible surgeries which followed.

The side effects to this medication are many – which is why, I suppose, no one gave it to me sooner.  I've been told it could take three months until my body gets used to it and the side effects disappear or lessen.  It will take another couple weeks until the medication has built up enough in my body to even begin working.

In the meantime, as I've told you – I'm fighting unparalleled exhaustion throughout each day.  One of the other potential side effects is clumsiness.  So far, I haven't felt very clumsy but I do get waves of dizziness and I frequently feel off balance.  I can see where dizziness and loss of balance could certainly lead to clumsiness.

"Whoa!" I say out loud, at least a few times each day, as the room begins to spin.  A few minutes later it stops spinning and I go about my business until it takes off and spins again.

It must have felt a lot like this for those who were lucky enough to rock the sixties?!  I've always wished I could have been an 18 – 20 year old during the sixties.

I'm very absent-minded lately too.  I'm sure that's been apparent in the ADD-ish-ness of my writing.  My brain keeps getting sidetracked.

It isn't operating on all cylinders right now.

Did you know, for instance, the word "clumsy" suddenly looks incredibly weird and ridiculous to me?

C-L-U-M-S-Y

What a funny looking word!

hee hee!

Of course, all these side effects are exacerbated when I need to take (narcotic) pain meds in addition to the other medication which isn't, yet, working.  I'm a one-woman entertainment show then.

Did that paragraph make sense?

I guess what I'm trying to say is I've got the "head trip" of all these drugs messing with me.  I know I'm not thinking my clearest right now.

That's why I'm curious to know what you think about something that happened. 

I went in for my first "PT session" with my new therapist, The Divine Ruler, yesterday.  Last week I had an evaluation with her, but this time I was expecting a full physical therapy session.

In truth, we, again, did next to nothing.

Seriously, The Torturer would blush from embarrassment if he ever let me off that easy.  In fact, I don't think The Torturer is physically capable of a session of such … nothingness.

Sadly, my arm is very sore despite the fact she barely touched it while I was there.

Yes, I AM a train car wreck – that's the whole point, isn't it?

In part, I think The Divine Ruler is trying to go easy on me until the new medication can build up in my system and start working.

Fine.  

I can understand that much even in my medicated, foggy, brain.  

In fact, it's probably the best strategy.  Even The Torturer told me I wouldn't be able to handle much of anything until the medication can build up in my system and begin working.

But …?!

In talking to The Divine Ruler, something else became apparent.  Something I wasn't expecting.  Something I'm having a hard time accepting.

She doesn't believe I'll ever get any better.  

Her exact words were, "I'm not trying to get your arm to work.  I just want to keep it moving enough so it doesn't get worse."

I immediately questioned her regarding her statement, of course.

She sees me as the permanently disabled person I *suppose* I am.

The problem is, I don't see myself as permanently disabled.

Last week, she was all enthusiastic and she was quite sure she was going to be the one to "fix" me. 

Apparently, she spent a week reviewing my medical records and now she seems to think her job is just to keep me from getting any worse.

Why am I having such a hard time with this?

Both intellectually, and emotionally?

It's really bothering me.

I mean, I have known for a long time I will never have a fully functioning arm again.

At the same time, I felt like The Torturer was fighting for me.  I felt like my doctor was fighting for me.  I felt like they were cheering me on, and at times – pushing me harder than I wanted to be pushed.

All in the hope for … more.

More use, more function – more normalcy.

Now, for the first time, I've encountered someone in the medical field who seems to think, "If your arm hasn't begun working in the last four years, it's never going to."

Is the problem that I prefer to live in denial?

Am I long overdue in accepting my disability?

Do I need to come to terms with reality?

Or should I expect a PT who fights for me?

Should I expect a PT who believes I can overcome the odds?

Am I kidding myself?

How deep in denial am I?

This is really, really, bothering me ….

What do you think?

© Twenty Four At Heart

26 Responses to “Drugs – They’re Such a Trip”

  1. Michelle

    I guess a lot depends on your meaning of “permanently disabled”. (I am temporarily disabled in that I have taken a hunk out of my index finger, which is dressed and taped to the middle finger – as a touch-typist I’m glad over 70% of typing is done with the left hand!)
    I don’t think you live in denial, I think you live in hope. There is a difference. You know that you will never have 100% use of your arm, but you want more use than you currently have.
    I think you will continue to have more conversations with your new PT as you work together, and the meds begin to work she will see the determination you have and will work with you.

  2. Maureen@IslandRoar

    This is tricky. As a nurse I know miracles happen every day and even the best experts don’t know everything and shouldn’t predict anything to be a sure thing. And you do want someone at least open to ANY possibility. I would be concerned that if her mind is made up she may not push you that little bit more or her expectations may be too low. But that could change as you work with her and she gets to know you and your determination, which is the most valuable tool of all and should never be underestimated. If, at that point, you still feel she doesn’t believe things could improve then you might want to think about looking for someone with a more open positive outlook.
    To keep believing in yourself you need someone right there with you.

  3. Jan

    What both Michelle and Maureen said.
    Right now, I don’t think it’s so important what *she* thinks as it is what YOU think. And if you think you can improve – AGAIN, you’ve done it before, so remember that – then I think you can, too.
    And your entire post made sense to me. And I’m not on drugs. That either says really good things about how you’re handling your new meds, or…well…lets just say it says really good things about how you’re handling your new meds.

  4. Abby Smith

    You already know the potential of your arm getting better by working so hard with the Torturer. There are so many examples of medical experts telling patients that a certain thing will or will not happen and there are just as many patients who make those certainties a complete sham. So just believe in yourself and go forward. There is no timeline for your recovery (at any level) — we all have to accept limitations in our bodies — which is not a bad thing, it’s just a reality. I believe with your inner perseverance you will regain strength and mobility.I believe.

  5. Amy

    The fact is that you *did* make progress with the Torturer. It was slow, it was well-earned, it was still progress. You became able to hold your arm up more, use your camera better, etc. You were happier. I agree with the person above, you live in hope, not denial. There is *always* hope. Why don’t you just go back to the Torturer? What keeps you from it? He was honest with you AND believes in improving your function. With your grit, fight, and determination, the last thing you need is someone taking that from you. You need someone to challenge you. Your strength is amazing, why settle for less from someone else?

  6. Kristan

    “I don’t think you live in denial, I think you live in hope. There is a difference.”
    I agree completely with Michelle. And I think Maureen’s point (about how seeing your dogged determination may change your PT’s attitude over time) is a really good one.
    I don’t think anyone’s given up on you; I think they just don’t know you yet. Don’t let anyone (or any drug) get you down. If you believe, then that’s enough. There’s always hope when you want something bad enough and are willing to work for it.

  7. Andrea (@shutterbitch)

    I don’t blame you for being bothered by it, seeing as how it seems as though The Divine Ruler has given up before even getting started. However, what you can control is your reaction to her attitude. You can let it defeat you, let it force you into believing your difficulties will never get any better, or you can convince her that you don’t accept being permanently disabled and that merely keeping you from getting worse is just not good enough for you. She’s only gone through your medical records. She doesn’t know you yet, nor does she know your spirit, your fight and drive, and the fact that you ZIP LINED and are a photographer and the naysaying just makes you work harder.
    Let your approach direct her, not what some pieces of paper in your medical file say. You can do it, and you will. She just may need some convincing. While that sucks that you have to convince her, it’s a blip on the whole process, not a dead end.

  8. stacy

    I vote for staying with the old medicine that you are used to and does not make you dizzy and going back to the torturer. Did I tell you that when i was trying that drug, Ultram or tramadol is the other name for it, that I started getting all twitchy? Yep. very attractive, eye twitches, cheek twitches and dizziness also. It felt like my head wasnt on straight but I still had pain. You were feeling better working with the torturer and maybe it is just that you have been away from pt for so long that you are doing less so the divine ruler is getting the wrong idea.

  9. Mark

    Yes you’re in denial. Its been 4 years. Accept reality.

  10. SAJ

    I think you’ll be that one freak person who against all odds gets better. It will probably take a really really long time. But you will.

  11. Kelly

    Your arm worked better just a couple months ago when you were going to PT. I remember your excitement when you lift a 3 pound weight! Of course you can improve and get back to where you were and I’m sure even further. Anyone who has watched you these last couple years knows you will continue to amaze us all with the strides you make. Your new pt sounds like a hope stealer. Hope stealers should not be allowed to be pts. Shame on her.

  12. Anne

    I’m going to be blunt. You and the torturer are the two most stubborn prideful people. You care about each other, you are friends, he can help you, I’m sure he could use your business in this economy. yes you had a falling out. You have argued many other times before, right? You belong with him. He can help you and he believes in you and cares about you. You both need to put the pride aside and admit you care about each other and have a pt relationship that works. Get back with someone who believes in you and you will overcome anything. I’d drop your new pt like a hot potato.

  13. Diane

    I know you in real life and this is what I know. You aren’t in denial. You know your arm will never work 100%. You are also a fighter and one of the most inspiring people I know. I believe with all my heart you can do MORE and get FURTHER. I have watched you go through so much. You are the strongest person I know. You have dealt with pain few people ever encounter and been valient in your fight for a normal life. I think you need a different therapist. You need someone who will believe in you. Not to try and make you 100% but to help you continue to improve. I honestly expect you will make improvements everyday of your life. I know you. I know you will do more than anyone ever expects.

  14. Linda Tustin

    Wow- All I can say Suzanne is follow your own mind and heart. Lots of specific advice from the commenters above. Lots of thoughtful advise. What I want to see you do is believe in yourself and follow up on that belief. Let the posts above soak in and take what you like and leave the rest. (excerpt from AA-No I am not a member LOL) You have the power- whether it is to decide to go back to the Torturer, find a new therapist or convice the Divine Ruler you can kick her ass as well as this disability. I believe in Suzanne and her inner goddess and warrior. That’s how I see you. smiles.

  15. Kel

    Here is how I look at it, how many people have they told: You will never walk, talk, etc again? And then those people do exactly that. If you aren’t happy with her evaluation, then tell her; I want more than just moving my arm so it won’t get worse…I want it to be fixed and I am determined to get it there. Keep your attitude positive. I don’t know your whole story or the extent of the damage, so I don’t want to give false hope; but I don’t think you should just accept this answer, even if you know your arm won’t ever be 100%. Hope that helped.

  16. Jenn in Tenn

    Ok, as always, I’m the late-comer to this post…I would have said almost all those things above! Maureen and Michelle hit the nail on the head.
    I DON’T know you in real life, but from reading you all this time, I feel you are one of the strongest women I could ever know. You have been through more than most can imagine.
    I think you need to get to know the Divine Ruler a little better and vice versa, and I think you need to go to your doctor and lay it out there for him. If nothing else, ask him to read this post, and address your concerns. Then take in the information and do what’s right for you.
    If nothing else, I just know you will continue to fight hard!

  17. Sandra

    I’d be a bit miffed by her attitude too, but in all honesty, I kinda respect her for being truthful.
    I don’t think your in denial. How many people have walked after Dr’s told them they never would?
    Does her not believing make you want to prove her wrong? If so, that’s a good thing too.

  18. Karen in Texas

    OK, first I think you should give the new meds their opportunity to work. You may see a world of difference or you may not. However, with the shape your arm is in, isn’t it worth it to see?
    Second, you were already progessing when you were with The Torturer, so it bothers me that the new lady doesn’t have much hope. Perhaps you should find someone who does.
    Last, disabled? Well, if you are thinking that you are going to get full range of motion back etc, then you are probably fooling yourself. If that means that you are classified as disabled, then so be it.
    You know that your arm can be better, it’s already been there once. Strive for that goal, strive to get your arm in the best shape you can. Make sure you have people around you who support these goals and GO FOR IT!

  19. Amy_in_Stl

    I guess I agree mostly with Karen. You made great progress with The Torturer; but you may never be fully functional. Can you continue to have PT for the rest of your life if that’s what it takes to keep you functional at all? I don’t know the answer; but maybe that’s what she meant by her statement.
    It did bother me that The Divine Ruler comes across as a glass half empty type of person. I would think having someone like that as my PT would be difficult as I’m the opposite and negative people really drain me.
    I guess maybe talk to her to voice your concerns given that you had progressed so well before. If I was in your shoes, I’d probably tell her that I’m concerned that she won’t be trying hard enough to help me given her previous statement. That I’m convinced that I will get better since I used to be more functional with another therapist.

  20. Jenny in MN

    There are a couple of ways of thinking on this. Some people who are in denial get depressed by what they are dealing with …’their reality’. Perhaps this PT wants you to know that this ‘could’ be your reality…not getting better but just trying to keep what you have from getting worse. However, NO ONE knows this for sure! Every single person is different. Maybe statistically you are destined to not get better, but that doesn’t mean 100% for sure that is the case. Is PT covering her butt by not promising something she is unsure she can deliver? If she said – We’ll improve your arm, etc. and it doesn’t happen – then can she get in trouble for that?
    I know this is going to be easier said than done, but let go. Let go of expectations and hopes. What will be – will be. Things happen whether you like them or not or want them to or not.
    If you work hard at getting the nerves to calm down and do what you are instructed to do your whole body will feel better. Then get to work in PT and ease into what needs to be done. Perhaps after the meds kick in and PT starts AND you behave (no more lifting dog food, etc) you will be able to start trying to push past the ‘don’t get worse phase’. Be honest with your feelings and concerns with the PT. Explain that you would like to work toward improving and not just staying where you are at now.
    Don’t revolve around expectations set by yourself or anyone else. Take each day and see what it gives you. Work toward the improvements you want to achieve. From what I understand there are new PT treatments coming out often. Perhaps this new path will find other treatments to try and you will have a breakthrough. Be honest with yourself and with the PT about what you want to try for and why. If she is dead set against the idea that you will ever progress forward, get a different PT person.
    Most of all…LOVE what you do have! As terrible as you feel right now – this is SO hard to do. Breathe deep (it helps bring oxygen to the muscles to promote healing to them and the nerves). I know, it is hard to do this but work on it. I used to hold my breath because of my pain levels. I have to work on this reminder every day…shouldn’t breathing be a natural thing?!
    Hang in there!

  21. Beth in NY

    I’ve been reading you for a long time. It seems to me, youve always been making progress even if it were slow. Even if there were setbacks. Of course you had hope for more because the improvements were always there. I dont think she should or CAN tell you there wont be more progress. How could she possible know that? She’s not God. You seem to have accepted you wont get full use back so I dont think your in denial either. i think youre hoping for the best and willing to work for it. I say screw her and find another pt.

  22. shaunna

    i’ve had m.s. for twenty-four years. there have been times where it looked like it was progressive, but i’ve always pulled out so i’m classified lapsing/remitting. if you saw me you wouldn’t guess it. i’m fully mobile. i usually don’t tell people because then they treat you differently. i “pass” as a member of non-disabled society. it simply causes less headaches.
    i suffer from debilitating fatigue and if i didn’t take a very expensive drug on a daily basis that was developed for narcolepsy i couldn’t function. the bottoms of my feet are permanently numb and if i didn’t take carbatrol (a time-release tegratol, a drug that is actually used in epilepsy) my limbs would always feel as if they are on fire. it “smooths” out the nerves. it sounds like they have you on one of the newer designer drugs that’s basically worthless because they turn your head to cotton. ask for carbatrol. go to a neurologist if the orthos won’t give it to you. i take high-level steroids when i have a spell. i’ve never taken any of the interferons and my neurologist agrees that i made a wise decision.
    i know all about the stages of acceptance and the power of denial. the best piece of advise i can give you is to always have a cup-have-full attitude, take the best care of yourself that you can, be informed and shop around for caregivers. why stay with – paying them – someone who is unsatisfactory?
    peace out and take care.

  23. shaunna

    relapsing/remitting & half-full. see what happens when you don’t proof read or preview? 🙂

  24. Kim @ Beautiful Wreck

    I am not sure what to say. I could never accept that my arm could never get better. Like someone else said in a previous post, when you had therapy with the Torturer your arm was improving. Evidently he believed your arm and situation could improve. Find out why if you don’t already know and address it with the new PT.

  25. Mike Krause

    Pick up a copy of Science and Health With Key To the Scriptures by Mary Baker Eddy. I avoided back surgery and returned to work without drugs. The doctors were incredulous. It was serious study of this book that did it.

  26. Erica

    Your situation is so challenging, mentally, emotionally and physically, that it might not be a great idea to work on it with someone who sets the bar too low.

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