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Another doctor's appointment

I'm going to the pain clinic on Tuesday for another appointment. I know that I am incredibly lucky to have access to such great doctors, nurses and nurse practitioners, but I still don't want to go. I don't want to actually verbalize that it is hard to function at these pain levels. I know, intellectually, that I did the best I can to control things without having to try something different. But I feel like my body is telling me that it cannot function at the top of the pain scale. I know my mind can't. Because when it's dealing with that much pain coming in, it doesn't have room for anything else.

I am amazed, to be honest, that I have been able to do okay so far this semester. I am amazed that I am not a total train wreck. I am glad I know the coping skills I do. But it's hard to handle the pain roller coaster that rises higher and higher and rarely goes down enough. That's what it's like, I hold off on taking the Percocet for as long as I can. But there are so many pain mountains. I would love to have things at a more level, lower place on the pain scale.

I don't know why it's so hard to say these things out loud, either. It is hard to even say them in my journal. Partially because I feel like all I do is complain and ask for help. And yet, I know that I won't be able to be more self-sufficient (I.E., not need as much help to do things like go to the drug store, figure out technology, and assert my opinions), and I won't be able to devote myself to the things and people I love most. I can't hold up my end of the friendships as well as I would like to. I find my thinking is slower when I'm in pain, and thus I don't answer questions as fully as I probably should. And when I'm in a lot of pain, it's hard to write the way I want to. I'm, in essence, trying to do more work with less spoons.

My internships that will start for social work next year are already becoming a concern. I know how to handle blindness issues. I think I'm good enough at dealing with technology that I will be able to figure out accommodations quickly. But I just don't think I am as good at adaptations relating to rSD.

I think I will be able to understand and communicate some of these issues for someone else, but it's almost like the RSD is this big blind spot, pardon the expression. It's like I can't quite see around it to figure out what I can or should do. And the issues aren't clear cut. There are about four suggestions that have been made, three of which would be more invasive. I am incredibly uncomfortable with the idea of sympathectomy. Everything I've read for my paper is telling me some very solid arguments for why that's not necessarily a good idea, and it's not reversable. Neurontin wasn't fun, but I stopped taking it and things got better (I didn't think Greenday's Boulevard of Broken Dreams" was optimistic and my memory improved greatly.) But you cannot reverse cutting or burning a nerve. A spinal cord stimulator makes me nervous because
1: It's close to the spine, and surgically implanted.
2: I worry that stimulating the nerves would mess with my perception of things with my left foot. That's the probing foot I use for working with Julio.
Ketamine may be an option, but I don't know how that would affect me either. So what I need to know is if there is some other reasonable plan to use to manage my pain. I really have been trying to do my part, to the best of my ability.

Another fear I have is that if I did have to add another medication, or even increase one, people would start to stigmatize me. I do not like medicines. I don't like that people sometimes look at the medications I take and may think I'm not strong enough. If I'm using physical therapy to manage my pain, it's okay. But using medicines has some stigma attached to it. I've had pharmacists make remarks to my mother recommending a certain cold medication because I wouldn't be able to turn it into meth. Sometimes I've seen medical professionals become more stiff once they see that I take all of the medicines. And there are so many news stories pointing fingers at people taking medicine when they should be using "other methods". For some reason, even though I now know that this really is a horrible disorder, and there's science to back it up, I always feel guilty when I hear these things.

Why is it that I can fight for someone else, and feel indignant that they are suffering. And know that they need every pill and patch they use, and yet sit there, in tears from pain and think I should suck it up? Why is it so hard to say "I need help?" My general desire is to sugar coat everything. Part of it is that I don't want to face the reality that taking out the screws only helped a tiny tiny bit.

Advocacy begins within oneself. I need to advocate for myself, with myself. I need to trust my intuition and be realistic. I don't use medicine for anything but managing my pain. If I have emotional pain, I manage that with writing or talking to someone. I take meds as directed. And I am obviously in pain. Knowing these facts, and gathering them and being honest on Tuesday is all I need to worry about. I'm being smart about it; bringing a friend who knows my pain scale, and hangs out with me. That has always helped me to be honest about how bad I hurt, not to mention keeps me calmer. I'm very aware of pain levels, without trying to dwell on them. I'll have facts and questions.

It's also not bad to struggle with these feelings of frustration and confusion. I keep telling myself that there is some truth to be learned here. I have friends who will either read this, or skip it, whichever they need to do. Being honest with myself, and going public about it is also a good thing. Because now I've told someone about it, it's easier to tell the next person. And it's helped me gather my thoughts. It's also an emotional catharsis.


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Apr. 7th, 2007 10:10 pm (UTC)
Dear puppy braille,

I apologize I still don't know your name. But I just wanted to comment about your blog today. I don't know much about your disability, but I can find that I really relate to today's post. Without going into much detail, I to find it hard to ask for help sometimes with any type of pain whether it be physical or emotional. You don't want to get people involved, but you have to. And after a while you don't know whether to trust your self and your intuition. Thanks,
Apr. 7th, 2007 10:19 pm (UTC)
Hi Debbie,

I'm sorry I forgot to reply to your previous comment. My name is Nickie, but I rarely sign my posts much anymore. Thanks for replying to my entry, and I'm glad that it resonated with you.
Apr. 7th, 2007 11:06 pm (UTC)
from the pain med cabinet
I don't know if this will help... I recently had to go completely to use of narcotics because I cannot ever use anti-inflamatories again due to the risk of anaphilactic shock or other reaction. It's very stigmatizing to pull a bottle of Lortab/Vicodin out of my bag at school, try to explain to my profs that I an failing quizzes not because I didn't do the work but because I've been awake all night with Lortab euphoria, etc. I've been trying to explain to people that I can't just pop my pain meds in the morning as a preventive, that I have to take them when the pain is here and if that happens to be at night, there goes my sleep, etc. But without them, I cannot think clearly because my energy goes to coping with pain and not lashing out at the nearest person--and sometimes I lose sleep over the pain anyway.

I don't know if it helps to look at it in terms of blindness... It would be ridiculous to let anyone tell you that if you just tried harder you could read your chapters with a regular book. You need your technology, and you need your books in accessible format. Or if you tried harder, you could get from A to B without a cane or Julio. What a bunch of hoopla! You would never stand for it. Julio has changed your life, and you need him. Pain interventions are the same way. They're just something you need to allow yourself to become used to emotionally because pain is an acquired thing; and doing the emotional dance is a lot harder than talking the talk for someone else. You aren't required to commit anything emotionally when you advocate for another person. In the long term, it makes no difference to you. But to do it yourself changes your life; and in early/young adulthood that is a huge leap to make. I've got a lot of years on you, and I can tell you that I could not have done this when I was 20. I do it now because I care so much less about the stigma. But 16 years of wrestling with blindness stigma have shaped that "don't care" attitude, and some eight years of living with poorly-controlled migraines and deteriorating not-osteoarthritis-afterall have pushed me to the point of determination. When it comes down to it, why do all those people stigmatizing you have the right to take your success away from you? Don't let them! If it means going back to Neurontin, then go back to Neurontin. If it means something else, then do something else. I've even known people whose doctors have had to put them on Meth because it's what was necessary to control their pain. Imagine the hoopla they got from pharmacies! (I don't want to think about it for too long!)
Apr. 7th, 2007 11:42 pm (UTC)
Re: from the pain med cabinet
That definitely helps. I know a lot of this intellectually, but it's hard to remember the intellectual stuff when you have a student ask if RSD is the syndrome you "supposedly have"...

I'm sorry you had to deal with those types of reactions too. It's something no one should have to deal with. I've had allergic reactions to Ibuprofen, and they were very frightening. I now take Celebrex as part of the multiple amounts of medications I take everyday. I function even more poorly if I don't have it.
Apr. 8th, 2007 01:02 pm (UTC)
Re: from the pain med cabinet
Good grief! Next time somsone says "supposedly" to you, rip off your shoe and give her a look at your purple foot and ask her if normal people have feet that color! Then launch into a diatribe about the use of loaded language and ask her if she would presume to ask if you were supposedly blind.
Apr. 9th, 2007 08:49 pm (UTC)
Re: from the pain med cabinet
The irony of this is that she's in the class on disabilities and disease. Unfortunately, there was an article that mentioned the controversy over this disorder. With what I've read in the last three or four weeks, it's pretty dated. I wish I hadn't been so shocked, because I would've normally said something to the effect of what you suggested.
Apr. 8th, 2007 02:17 pm (UTC)
Wow! I can't believe a pharmasist would say something like that! That's just plain sad! Not all college students are interested in making drugs. Good luck on Tuesday. Hopefully they can do something to make you more comfortable. Did I imagine it or were you planning on taking some summer classes at some point?

Apr. 9th, 2007 08:50 pm (UTC)
I was hoping to take a summer class in abnormal psychology, but I hear it's full. So the only thing I'm doing for sure is convention. Thanks for your comment!
Apr. 9th, 2007 03:51 am (UTC)
I have a very good friend and coworker who also has been dealing with severe pain. She expresses a lot of the feelings you do. Knowing her has really put your entry into perspective for me. It is a terrible shame that modern medicine has not yet been able to understand and control pain, and that the victims of it are victimized twice by society's refusal to recognize the terrible physical and psychological impact that pain has on the lives of real people. My coworker is like you, one tough cookie, but being with her every day, I have come to understand how pain can break the spirit of even the toughest people, and it is so unfortunate that you guys feel so bad about complaining or reaching out for help. Aside from a few pains in my hands from typing too much, I feel very blessed that I don't have to cope with such a terrible burden, but if it is any consulation to you, I am one person who does believe how much you are hurting. I am hoping that, as medical science comes to understand the brain better, real help can finally be offered to people like you and my friend Elaine.
Apr. 9th, 2007 08:55 pm (UTC)
The more I learn about my condition and read from others, the more I want to do something about it. right now, that's where I think I'm going with social work. Thanks for your comment, it means a lot.
Apr. 9th, 2007 11:11 pm (UTC)
Tough love for Nickie
had pharmacists make remarks to my mother recommending a certain cold medication because I wouldn't be able to turn it into meth.

This was a joke. right? A good ha, ha, ha? Please, tell me this is the case.

I hold off on taking the Percocet for as long as I can.

All of my doctors and nurses have yelled at me in concert - DON'T. Let the medicine work for you - take it. I've had RSD since 1993 - my motto after all of these years? Suffering is stupid.

if I did have to add another medication, or even increase one, people would start to stigmatize me.

Except for your blog admissions - who are these people and why should they care? Do you wear a sign attached to your back? Do you send out a school-wide bulletin? This is just wrong. What you take, how much of it and when you take it are PRIVATE - between you and your healthcare providers, if you so choose.

ask for help

Sounds like the same old story - DO IT! Let the professionals do the jobs for which they've trained.
And the motto? Suffering is ......not necessary.

I feel like my body is telling me that it cannot function at the top of the pain scale.

None of us can function at the top of the pain scale. You are not listening to that intuition. So, please tell me - what's wrong with this picture?

I take meds as directed.

If you did - then you wouldn't be in such awful pain. Humans are great at adaptation. Where there is a will - there's a way for you to medicate yourself and get relief. Don't let random strangers dictate how you take CARE of yourself. No person has the right to keep you from proper pain control! You should listen to the doctors guidance and discard the influence of those who have never walked a mile in your shoes or paws.
Apr. 9th, 2007 11:49 pm (UTC)
Re: Tough love for Nickie
The biggest issue I have is that I'm not sure what is reasonable to expect. Where does one draw the line between reasonable and unreasonable? I do, unfortunately, find myself having to explain that I'm taking certain medications. As needed is a very hard target to hit.

How did you come to a point of figuring out what was reasonable and possible? I'm finding that taking my medication as needed, but only every six hours as I'm supposed to isn't sufficient. And of course, I don't mess with any dose of medication by taking more or less Lyrica or Amitriptyline. That's more of what I was getting at with the "as directed" thing.

In essence, my problem for the last year has been where to draw the line. At the outset, it's easier to just say okay, I'll come in for a nerve block when told. Now, though, it's more tricky to know where that line to take the medication is. Does this make any sense.

I agree with your comment "suffering is stupid", I am just better at applying it to others...

Thanks for being willing to read and comment.
Apr. 10th, 2007 09:49 pm (UTC)
Re: Tough love for Nickie
As needed is a very hard target to hit.

My doctor explained it to me this way; if you are extremely thirsty - it's already too late. The necessity of you drinking water, has now become urgent. The idea is to drink enough water to stave off becoming bone-dry. To avoid that "I've got to have water right now." Take many small sips and that feeling of immediacy will diminish considerably.

I'll come in for a nerve block when told.

Your body is in pain. You are in control.

I'm recognizing that power-struggle you're having with treatment/medication. Please open up a dialog with your doctor.

"This 'every 6 hours' dosage is not working for me. I'd like for you to give me some samples to try at a higher dose. Perhaps, we can try an adjustment over a weekend. Another RSD patient told me that suffering is stupid and you (Doctor) and I, must to work change that. Is there a water-fountain nearby?"

As a social worker, you analyze patients, their surroundings, behavior, problems and the list goes on-and-on. Each patient has their own unique set of problems. It would be valuable if you had some first-hand experience. Do better for yourself and then work on fixing others. You are smart. Use this pain issue as a head-on confrontation. As your studies move along -- you will have a frame-of-reference. Experience has teaching value. Just this once - put yourself at the top of the list. Take pain-control as your first priority. Don't get thirsty. Be honest about how you feel and what will it take to feel better.

Apr. 10th, 2007 10:32 pm (UTC)
Re: Tough love for Nickie
Today, I saw the nurse practitioner at the pain clinic. I'll probably update later, once I finish my homework and such. I described my symptoms, and asked if there was a way to keep from dealing with the problems of pain roller-coasters and the meds not lasting long enough. She also examined me. I am supposed to get a black when I can, though iit will be a bit before I can get in.

I'm now on a longer acting version, Oxycontin. It's a twelve hour dosing, and I can still use Percocet if there are times when the pain is high.

I was honest and told her I don't want to come in, and just ask for medicine, I know that meds are not always the answer. She said "You've got RSD, you get flares. Sometimes you need meds."

I tend to assume that I will get told that I don't need mediciation. Probably from all of the time I spent not knowing what condition I have. Anyway, I think she and I had a good converssation, and we're on the same page. This is the second time I've seen her, and I feel like she's on my side. Knowing that makes it much easier to ask for what I need.

You're very right about what social workers do.. Our professor always reminds us to spend time in slef-care. It's always easier to do the right thing once you take the first step.

Thanks for being willing to answer my questions. Virtual, gentle, non-pain producing hugs. And wags from Julio.
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