Between that rock and a hard place

Those of us with chronic pain we live between a rock and a hard place.  Always a certain amount of suffering that needs to be endured, never enough treatment to help with it and no one to tell us how to manage our pain.


My dad came for a short visit on his way to start a new job and we got to chatting.  We ended up chatting about chronic pain, that of FMS (for both of us) and migraines in my case.  My father, I believe, suffers more physical pain from FMS than I do.  I mean I have had some crippling bouts of it, no doubt about it, and the Lyrica definately helps us both, but on a daily baseline pain I would say his is significantly higher than me.  And on my side of the genetic pool I ended up with chronic migraines, which are quite obviously complicated by the FMS.  Both of us have suffered for quite some time.  I believe my father was diagnosed in his late thirties.  And me when I was 22.  Although I know in my case a specialist said I was symptomatic at age 16 and I had symptoms as early as 8.  So we both have long records of chronic pain.  Long records of seeing doctors, getting treatments, trying medications and seeing specialists.

I expressed my fustration with my situation.  Essentially that I am not sick enough for long term disability according to insurance standards.  He knew of the same stories I do of people who have stuggled with insurance companies and getting cut off once they are deemed 'fit' to return to work.  And, my treatment options have dwindled, my neurologist no longer seeing any real options that will work for me.  So, I will continue to suffer as much, or more, while having to work full time which will natually increase my physical, mental and emotional pain because no one sees fit to create an option in the freaking middle.  I felt a profound sense of relief that my father understood what I was talking about.  That there is something so intrinsically wrong with the system that if they can't cure you they just leave you to suffer, but if you are not insane or dying then clearly you are fully capable of working.  Wha? 

That it is an insane burdan to be expected to endure this suffering without anything to ease it.  By suffering I mean more than pain.  I mean the emotional toll of dealing with chronic pain, the problems with other symptoms, the stress of working around a disability in everyday life and yes the physical pain on a day to day basis.  I think it is cruel that they just leave us to suffer without options.  Some of us very lucky few will get options.  Such things as pain clinics.  Ways to cope with pain.  Ways to live with suffering when there is nothing that can be done about it.  Positive ways.  Ways I can't imagine because I have never been refered to such placed because they would not be able to help with 'my kind of pain'.  But it is damn cruel to not offer those options and just expect us to figure it out on our own.  Suffering is a given.  Suffering well is not.  It is unrealistic of doctors to think people with chronic pain will natually be able to cope year after year, decade after decade.  Because, just so they know, there are positve coping strategies and there are negative ones... and sometimes we will use whatever the hell gets us through the day.  And can they say that is bad when they are not doing a damn thing to help their patients?  But that is where they leave us.  Just winging it.

That is where they leave all the power up to us.  Where we have the choice.  Get busy living, or get busy dying.  Unforunately, when we do not have effective treatment and life is truly a living hell we often turn to the later.  And when we choose to get busy living we have to figure out how to live well.  How to somehow reduce our suffering to a manageable level to function and survive.  Frankly I sure the hell don't know how to do it yet.  I have tried so many things my head hurts just thinking about it.  There really ought to be some sort of pain rehabilitation a person can take where they teach you effective ways to manage your pain.

Topamax

It has been seven years since I was on Topamax and here we are back again.  My neuro has decided to try it again, with my other preventatives, but does not want to put me on too much, because of my other preventatives.  Yeah, more drugs piled onto more drugs is not always the best idea.  However there is something to be said for his drug choice.  I did have a positive result with it when I was on it.  It did reduce migraine frequency, just not to a level that was satisfactory to my doctor at the time, so she added Inderal which did nothing and then added more Inderal which caused things like passing out and a blood pressure close to a dead persons.  And then a short term leave from work, a referral to a neuro and different drugs.  It was bad timing really given I had just been diagnosed with hypothyroidism which can cause migraines so maybe they shouldn't have played around with my meds and should have waited to see what the Synthroid did.  The point is doctors aim for a significant reduction in migraine frequency and that seems to be really unrealistic at this point.  A reduction, a positive result of any kind, is a win really.  So we will see if it does anything this time around.  I do remember when my drug plan switched me from Topamax to the generic form I didn't have the same result and at the time my doctor thought I was just getting used to the drug and it was not working as well. 

The only side effects I really remember with Topamax was the tingling in the hands, feet and face... and given I don't feel must at all in my hands now, it isn't likely to bother me.  One potential side effect is weight loss, which is very rare as a side effect, and hey here's hoping it counteracts the weight gain I got from the last preventatives.  Now most people have no fondness for Topamax and label it Dopamax because one major side effect is that it makes you stupid.  But, then, really my brain functioning goes from high to extremely low every damn day due to migraines so I honestly don't think I'll notice.  I didn't notice before.  I still had issues with my short term memory.  I still had trouble concentrating.  Still had issues remembering events.  Honestly if it caused more brain fog than I already get from the migraine FMS combo then I'll be way too dumb to notice.

That was rather depressing

First, I would like to say a little something about why I stopped seeing my shrink before I get into my rather depressing day.  My shrink had told me I should not be working.  Period.  And I agreed of course.  But I said it was not so simple.  And she said I should go on long term leave and permanent disability.  And I said it is not so simple.  Yes, that makes perfect sense to me, to her, and to any other rational person when you think about chronic pain and inability to function.  That is not the way the insurance world works though, so getting on long term leave is next to impossible.  They go out of their way to prove you can do a job which means you are not completely disabled.  I beg to differ mind you, because even a job, of any sort, requires a brain and also requires the ability to get up and leave the house.  Any job that has specific hours, no matter what those hours are, no matter if a trained monkey could perform that job, still requires someone able to meet those hours.  Calling in sick repeatedly with that simple job is just as problamatic with any other job.  So she pissed me off by saying I should take advantage of options that I actually can't take advantage off.  I stopped seeing her when I was cleared to return to work... because I was not put on long term disability, thus proving I was right and she was an idiot.  And I stand by that today.

So, I went to my neuro appointment.  And we are now at the point where there is nothing he can do for me.  Yay!  Every time I hear this from a doctor it makes me very sad.  Because they take away that last itty bitty shred of hope I was holding onto.  It is worse this time because he had options those other docs did not... and I've now run out of those options.  Plus my numb hand thing?  Is migraine related and could actually be permanent damage so might be there forever.  And the vertigo?  Also migraine related and also might never go away.  One of my preventatives is the best one for migraine related aura symptoms and it obviously is not working for me, although it does help with some of the visual stuff... not the worst of it, but some.  So all that migraine related symptoms and all those migraines you think maybe Now I could go on long term leave.  But no.  Of course not, for the same reason I listed above, he said it is very difficult to get done because they will prove I am somehow capable of holding down a job.  To clarify that means a) I am in constant pain and b) there will be no relief and c) that is not 'sick enough' to go on disability and d) apparently I should be fine with that.

Once again I wonder if they want us to kill ourselves.  I think they must.  Problem solved right?  Can't work anymore and not a drain on the healthcare system.  They ought to just advoacate suicide as a final treatment option.  They leave us no other options.  Just figure out how to suffer well and quietly and be functional at a job, somehow.  Or don't work and starve but suffer less.  But don't kill yourself because for some reason that is just wrong... sure it is a living hell to have to live with constant migraines while working a full time job but apparently that is better?  Not so sure about that.  Might just need to see a shrink to deal with all the depression associated with being in constant pain, working a full time job while I am at it with the full awareness it will never get better, there will never be any relief and apparently while there are no treatments left to try there are also no options to make that pain more bearable.  It is cruel really.  So cruel.  Is it so hard to offer options to those of us who have no effective treatment?  Is it so hard to say this person can't work full time any more, she needs options to lessen the pain while fucntioning as much as she can?  Instead of forcing us to work full time, which makes the pain and symptoms worse, with no effective treatment until eventually, if we are very, very lucky, we stroke out and die.  Finally, then, we get some relief.  What bastards. 

If that is not depressing I don't know what is.  If there were viable options available it would not be, but as it is, very depressing.  Unless I figure out something on my own. There will be no help for me otherwise and I will go on like this until I have a flipping nervous breakdown.  Or worse.  So hopefully I will stave off depression and try to find alternative solutions.  Wish me luck with that.  What my neuro is going to do is switch up my medications to one I was on years ago... which is about what I expected him to do anyway.  At least it is something.  If that doesn't work, which honestly having a hard time with the optimisim at this point, then he will send me to a headache specialist clinic four hours away, which has an insanely long waiting list and he said likely won't have very much other options, but he has none, so it's something.

As such I am totally screwed.  I have not been doing well on the work front lately but apparently, treatment or no treatment, pain or no pain, able to see or blind as a bat, I have to figure out a way to work, get through the pain on a daily basis, not miss any days, figure out how to be able to consentrate and make no errors when at work with a migraine.  Now if I knew how to do that I would already be freaking doing it wouldn't I?  But apparently that is my job.  It is my job to figure out how to suffer well, function in pain without getting suicidal in the process.  There is no middle of the road for us even.  You think there would be some sort of options available.  And there are for people with chronic pain disabilties on some sort of special list, of which, apparently migraines are not (because they must think we cannot have them all the time and are therefore capable of working some of the time, not for me, but maybe some of us, in which case I would love to find the job where 'some of the time' is a work option).  I know people can get long term disability for FMS, but I also know some people who got screwed over after two years on it when it changed from 'unable to do the job they are trained for' to 'unable to do a job'.  And you know that distinction pisses me off.  I would love to find a job that is fine with me being sick often, fine with me only working at 50% of my capacity most of the time, and has such flexible hours that I can come in when I am able.  That is not a job, that is no job I've ever heard off exept a work at home one.  And hell we would all love a work from home job but finding that is a little more difficult becayse it is not a job, it is a very specific job style that most employers do not have for an option.  So what those insurance dudes are really saying is yes you can't work your full time desk job but you can work some sort of very flexible work at home job for less money assuming you can find such a job, but because such a job does exist, somewhere, and if you found it you would be able to do it on a basic level, therefore you are clearly not completely unable to work.  Asshats.

It's just a really bad headache

Sometimes I think people believe migraines are a just a really bad headache.  I think this is because they are focusing on the symptom of pain, which is familiar to them, in the form of a headache.  So then they think migraines must just be more pain.  Even doctors focus on the pain mostly.  The pain is a big deal.

When I was younger my migraines presented in a very typical way.  I got a very recognizable aura in form of large blotches of light completely obscuring on side of my vision and visual snow.  I got very normal nausea that was violent enough I was put on a dissovable triptan, but nausea is a classic migraine sysmtom.  And I had very actute sudden onset migraine pain.  My migraines always occured from hormonal triggers and sometimes occured randomly at other times.  This is the sort of migraine people think about when they hear the word.

But every migraine sufferer has differnt assortments of aura sysmtoms, if they get them, and sometimes they do not get pain as a symptom at all.  And every migraine we get is different than other ones we get.  Expecially when migraines become chronic... when the brain is always on overdive and some aura symptoms begin to persist as a resut.  My visual snow for example became permanent.  It was worse with a migraine attack but it is always there.

Migraine though come with a variety of neurlogical symptoms that simply are mind boggling to others.  Thsi vertigo I have been getting is not abnormal, even for me, since I get episodes of vertigo with migraines every so often.  Now it is persisting.

Migraines-A-General-Overview I go though the basics but what I am refering to here is the section on aura symptoms that are very varied and make migraine far beyond just a migraine or even that classical image of a migraine.  Distortions in the perception of time, in hearing, in smelling, seeing, touch and motor skills.  For example this migraine week I have been getting
"Autokinesis: Illusion of apparent movement of stationary objects. Objects may appear to be warping and shifting." and "Dysmetropsia: Visual illusions involving an alteration in the size or separation of visual objects. Often seen in Alice in Wonderland Syndrome." and then this one "Depersonalisation: affects our self-awareness. It is a feeling of being detatched from a situation, watching your self act, while having no control. The world may feel surreal, intangible or dream like." all with the vertigo itself.

So a migraine is never just a migraine.  It is the brain we are talking about after all and the symptoms that occur during a migraine are diverse, bizzare and not ones people are familiar with.  Hard to call in sick to work saying 'I have a migraine but until the horribly painful migraine I had yesterday and went to work with, this is equally painful but I can really see my envioment as it seems to be warpy and shifting, I have vergio and the floor feels spoungey, the floor looks to be closer than it should be and hallway longer.... so while I could try to dampen the pain as best I can it is moot because I would jave to be a freakin idiot to drive like this.'  Trust me I have tried this.  Morning migraines tend to have full blown weird woo woo symtptoms that mess up my abilityt to see and move.

There is a level of weirdness that we go though that is difficult to explain.  Because I get so many migraines, well some of them are my classic migraine, some make me feel like I have the worst stomach flu ever, some the pain is so far beyond acute it cannot be treated, some make it impossible to see, some make it impossible to hear, some make it difficult to speak while others make it hard to comprehend what others speak.

I'm still fighting a killer status migraine right now and at that pain point where if someone said it was just a headache or that their migraines are not like that... I would likely punch them in the face.

'Vacation' time

I decided on rather short notice to take next week off for my 'holiday', which I don't think impressed my boss but is perfect timing.  One of my co-workers is going to be on course soon so better to take time off before rather than during.  I had little projects on the go, so less work to leave for others to do.  It is not busy yet but will be soon so better than waiting.  And, of course, I have a neuro appointment next week where no doubt I will be switching medications and having a little time to adjust to them is always a good idea.

Most of all I have been having some real issues fuctioning and taking a bit of a break is a good idea.  Last week was a long status migraine hell.  I woke with a brutal migraine today and since it woke me up with full blown migraine fury it was difficult to treat.  Just one of those days where I got up, migrated to the couch and didn't move from it all day.  Now had it been a work day it would have been a trial to get to work, not just because I woke with an acute migraine but because morning migraines are always intense on the neurological symptoms and today was no different.  My vision is just plain warpy today... everything shifting, flashing and moving.  So distorted there was no way in hell I was getting anything done or doing anything as stupid as getting behind the wheel of a vehicle.  A lot easier to do nothing on a day off though... and guilt free as well.  I know that with the neurological symptoms being as intense as they are lately, and this status migraine lasting longer than it ought to, that had I not chosen to take a 'vacation' next week would have been very difficult to manage.  I hate taking holidays early in the year because then there is less to take later, but I did spread the rest out quite a bit because sometimes just knowing I have an extended long weekend coming up helps me get through the week.

The last few months have been brutal and I feel a great deal of relief knowing I can just rest next week... just not do a damn thing.

Reflecting on 2011

Someone from a migraine forum posted a poll regarding how many migraines we suffered in 2011 and my answer was above the highest possible answer for the poll, which made me reflect a little on this past year where I have suffered an estimated 300 migraines, possibly more given some months were quite nasty.

2011 was actually an exceptionally bad year.  Bad from migraine frequency.  Bad for emotional well being.  Definitely bad for persistent long lasting random symptoms.  Some might think it was in fact better than 2010, given I did not try to kill myself, but honestly, that should not be the meter to rate 'successful' treatments by.  But by all means if your chronic migraine patient kills themselves consider the treatment a big 'fail'.  This year was so bad that if I had not reached that emotional and physical breaking point in 2010 then I would have in 2011.  Maybe inevitable really.  We all likely have our own breaking points when it comes to pain especially when other factors are tossed into the mix.  Always good to throw out a reminder of that suicide attempt by the way, because I have to remind myself of what went down.  It still feels unreal to me.  Maybe because there was no real backlash from it really.  Don't get me wrong, for a bit there everyone was stirred up and I felt real bad about that, and still do every time am reminded of what pain I could have, and did, cause to others.  But there was no discernible changes to my medical treatment (aside from being taken off Cymbalta and being put on an alternate, stronger, sleeping pill for a short duration).  It was like they completely understood how someone suffering that much pain all the freakin time would go there, but because it was completely understandable such that any rational person would go there, there was no reason to be overly concerned about it.  Even though the pain levels remained the same.  The treatment was not really changed.  Expectations on the workfront were exactly the same.  ... yet... even though all the conditions remained the same they did not think I would go there again.  Which actually if I were inclined to do so they sure made it easy for me to do so if I wished.  There was just enough concern to ensure I was not going to jump of the nearest bridge but not enough to effectively do anything about any of the factors that led to the desire to do so.  When I realized how completely indifferent the world was to the amount of pain I endured it actually made me more depressed than I was in 2010... the irony of that is freaking hilarious.  So I was a bit numb at first.  Sort of just dumb struck that when certain professionals were forced to become aware of the actual amount of pain I endured and did not care to do anything about it anyway... it hurt me in a real way.  Totally different if they do not 'get' how much pain you are in.  After the numb faze came the angry frustrated faze (why won't they do something?  Why do I have to endure this?).  And then just the acceptance faze (obviously nothing I do, say or feel is going to change a damn thing so just... do what they want).  Such that at the end of 2011 I was just tired and ready to move on.  Really the last half of the year has been survival mode... I was in too much pain, too tired, so I just got through one day at a time.  When there is that much pain things get hazy, so I don't remember much after the emotional rollercoaster was finished.

So 2011 should have been more about recovery and stress reduction, but as usual, not.  Weird how every time we realize we need to seriously reduce our stress levels the rest of the world decides we are not 'sick enough' and begin to torment us endlessly.  Not saying it was a bad year for that per sa, just still reeling from 2010 really on that score.  Spent the first three months of 2011 just being emotionally numb and coming to terms with the fact it made no difference how my emotional welfare was, because no one but myself and my family cared or took it into consideration.  It was like emotional pain was just an unpleasant side effect of chronic pain, to be expected but not that big of a deal.  I just had to suck it up and remind myself to be emotionally okay with that... because, trust me, for a bit I was not okay with that, just the fact I was being forced to endure more brought tears to my eyes.  That being said after 300 hundred migraines imagine how many sick days I had... I actually don't know but I know it was high because I remember being reminded of it more than once by the boss lady.  And even though I had too many sick days I was not threatened with being fired, so in that sense, 2011 was a rather good year.  Except the usual guilt from missing work and the unfortunate fact my migraines have been so severe I literally could not even 'show up' in a boat load of pain and coast through the day, because I was doing that, a lot, and there were simply some extremely acute untreated migraines and persistent status migraines that slipped through the cracks of my ability to treat them and/or my ability to cope with them.  Not nearly as many as you would think with that whole 300 marker, but too many.

Nothing changes.  Nothing stays the same. 

I want to hope 2012 will be better, but if the past predicts the future then that sure isn't going to happen.  But less awful would be nice.  You know when your medication is just that perfect balance where yes, you still have chronic pain that cripples all aspects of your life, but, you have just enough control to maintain, to sort of function and to get by.  That there is a damn good year.  Most would hope for better but unfortunately I have to be realistic.  My best year was when my medication was at that best results faze of a 50% reduction in migraines.  That means my bestest of the best years I had about 150 or so migraines.  Still chronic.  Still really, really not fun.  But just better enough I could feel like I was getting somewhere.  Lets face it a 50% reduction is damn awesome even if it doesn't sound like it sometimes.  It is also very hard to maintain because it is not just the perfect amount of medications, it is also about other factors like other crappy medical conditions, lack of sleep and in some years an insane amount of work stress.  So getting back to that would be so awesome.  That is what I want to get from my net neuro appointment... I'm almost desperate with this hope that he will just do something.  I don't expect a cure, man, just a little less crappiness is all I ask for in the new year.  Although given the weirdness of my symptoms lately I really hope he is on the ball.

Okay.  Point is. 2011 sucked balls.  Let's just forget it happened... I mostly have anyway. 2012 will not likely have any vast improvements.  The secret is to actively not think about how much it will suck and to force yourself to repeatedly believe it will be better for whatever random reason.  Pick and reason and go with it.  Don't reflect on the past for longer than a day because reflecting just brings to mind all that suckiness.

I wish my neuro apt was closer

It is in fact this month, but it does not seem close enough.  I am losing it with these migraines.  The vertigo thing is just messing me up.  I have a hard time walking straight, everything looks like it is pulsing and my eyes won't track right.  In the last two months I have missed too many days, more than usual, even for me which tells me I need to see my neuro stat.  I hate missing work but these migraines are totally kicking my ass in more than just pain.  Mind you, the pain part is also off the chart right now.  Last couple of days I have not been able to sleep worth a damn, so the crappy migraine I had yesterday (which I treated from the getgo with a triptan, one of those vertigo pills and then later witj painkillers) did not go away, my vision just got wierder and weirder.  Then after no bloody sleep last night today was worse and I treated right away again and still did not break the migraine.

I just can't wake up

I admit my migraine symptoms have been erratic and intense, which is disturbing and difficult to function around.  That's just the way my brain rolls and it is not like my workplace has accomadation for someone merely crippled by pain to help get me through a rough spot... they prefer the make things ways more stressful approach.  Not to say it is getting to me, yet, just that it annoys me. I think all work places would be the same really becase who wants a chronically ill employee right?  That doesn't make it right some of the crap companies pull on us, but I think the bias and discrimination is probally univerally found in most places of employment.  I mean my workplace almost killed me, literally, and that is pretty impressive.  But I made it through 2011 without jumping off a cliff and that was my New Years resolution that year.  So Yay me.  Which means I try not to let that crap get to me as much.  But I am struggling with the migraines lately, added with the numbness in my hands, adding in the episodes of vertigo, adding in the increase in intensity to my visual aura making everything warpy.  It is hard-er.  Now since the vertigo began and maybe it is a part of that symptom I have had the worst fatigue ever.  It could be a fibro thing saying 'hey, the pain is draining you, deal with it'.  It is severe fatigue though.  After I drag myself out of bed I am confused and disorientated.  I begin to shake that off but I am still sluggish and tired.  I manged to get dressed and out the door and to work.  About an hour in I start yawning and craving a nap.  By the time lunch rolls around I go home and do have a nap, to the point of almost falling into a deep sleep and sleeping in.  I drag myself back to work and the fatigue begins to effect my consentation and my eyes get all wonky, having troubles focusing on the screen like I have not had enough sleep or something.  But I am getting enough sleep, so it is just crazy fatigue that won't go away.

I tried eating sugar to give me a boost.  I tried eating regular meals.  I tried shooting coffee to try and wake up a bit.  I tried sleeping in on the weekend.  I tried taking an extra nap on the weekend.  Nothing is shaking this fatigue.  Really sucks.

On a good note, crazy ass migraines asside, my neuro appointment is this month.  So less than a month and I can get some answers.  I am putting all my hope on him but he may not have answers and he may not know what to do.  That scares me.  I know he does not have a magic pill that will solve all my problems.  I just want answers and potentially something that can make things just a little bit better.  Thats all I ask.  A little bit better.

Happy New Year

I brought the new year in with a whopping migraine, one that I could not treat with triptans because I had already done so for the three days prior.  So no New Years Eve party or socializing for me this year... or last year if I recall correctly.  Mind you, I don't think I'd be up for it even had I been migraine free; all that vertigo and such that has been going on has also been causing some serious fatigue.  I get insane nap attacks... sometimes after only being up for an hour.  Such a waste of day when it is spent sleeping.

Anyway I am so done with 2011.  Bring it on 2012.  Let's hope for less pain this year.  Better treatment.  Less work related stress.  Less annoying and random symptoms.

My  New Years resolution is just to continue not smoking.  That will be an achievement in itself.  Actually might as well tack on to continue mild exercise, better eating habits and taking my vitamins... because being the way my brain is, it is damn hard to stick to any routine of any sort, so if I can continue for the next year eventually it will become a habit.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...