When in pain do what you can not what you think you should

Here's the thing: we all struggle to cope with chronic pain while trying to live a functional life to some extent.  No one said it would be easy or fair and man I wish we all could get a break one in awhile, but it is what it is.  However sometimes we get lost in the struggle to do what we need to do.  It is taxing and draining and there is never anything left over to do something just for ourselves.  As I said in the past I think we need distractions and hobbies to just do something we enjoy doing for the sake of the enjoyment.  Not what we need to do.  Not what he have to do.  Not just for pure survival.

For me that is writing.  I write novels and self-publish them.  I write articles and post them on my hub page.  I enjoy both imensely and it gets me out of the pain a bit.  No matter how 'distracting' work may be it is always fighting to work through the pain, because I need to, because I have to.  Writing is about absorbing myself in an activity I take pleasure in, that takes me out of the moment of pain.  And even though the acitivity is not considered important to others, there is no function for it, the enjoyment I recieve from doing it makes it more vital than anything else I do.  If we cannot find enjoyment in One thing then we will struggle with all the whys of why we have to struggle with pain, why we have to tolerate it, why we have to do all the things we do while we suffer.  Just One thing needs to be for ourselves and no defined by the expectations of others and not defined by the need to tolerate pain.  Something others cannot control or define, something the pain cannot take from us. 

I reminded myself of that this weekend, after a brutal migraine month with the future looking to be just as brutal for awhile... I thought to myself why am I focusing on that?  Yeah there are things I need to do, just like everyone else in the same boat as me, and there are so many of us.  Yeah, when I think about it, it just does not seem worthwhile to endure all that pain for a paycheque.  Necessary, but not pleasant.  And writing is not about others at all, yes you put it out there for others to enjoy, but it all comes from within.  And I realized I needed to write more often, just for myself, just because it is an activity not defined by pain that makes me happy.  It struck me that the act itself is just as necessary for my survival.  So I relaxed this weekend working on a novel and on another hub page... and I felt good about the progress I made and I thought less about the pain I was in.

So whatever that One thing is for you I suggest you do it more because it is just as necessary to your survival, self-worth and your emotional wellbeing.  I think we should promise ourselves that much.  Just a little time to enjoy something just because.  We do so much because we have to, because we think we should and we lie to ourselves by thinking we need to do those things for ourselves but we know it is for others, and that is fine, but we owe it to ourselves to do something just for ourselves.

Anyway I thought I would share my little eureka moment with you all.  If you want to read some of my posted writing there is a Hubpages link to the left, most of my hubs are philosophy related but there are a few health ones as well, and the novels I have posted can be seen in the top bar there, those are all fantasy related because when I write fiction I try to avoid reality because I have enough realness in my own life.

I hope my doc can schedule a bit better than Friday...

So I got a call Friday morning at about ten after 8, when I need to be at work at 8:30.  So this lady asks me if I'm going to be making my 8AM appointment that day at the inpatient hospital thing my doc arranged.  I said no of course.  I mean, yeah I wanted to go because anything with the slightest bit of potential to decrease the frequent migraines lately would be awesome.  But I had to be at work in less than half an hour and I'd already called in sick Monday and once more this month (or more? It is a little hazy) so obviously I could not call in sick for a migraine or migraine related treatment or an ER visit for that matter.  Work is always touch and go about such things.  Legally they have to permit me to go to the ER or likely in this case a schedualed treatment... but they most certainly don't have to be pleased about it.  I am trying my hardest not to strain their good will because I don't like adding stress to my stress.  So I told them I had to go to work and they did not give me near enough time to arrange with work a section of the day off for it.  The lady did not seem pleased but then it is not like they had given me a heads up about it to make an appointment or confirm a time.  She said I had to call my doctors office to arrange another time, which I will, but remembering to do so and then doing so usually takes time.  I always remember these things after work, or on the weekend, which obviously does not work.  However, if my doctor is right and stress from tolerating pain while working with frequent acute migraines is causing this unpleasant numbness spreading through my hands then aggravating my employer, beyond the aggravation already there, is not going to help the situation.

Also what does not help... a wicked migraine on Sunday.

Disibility insurance on my mortgage

I was just told my disability insurance on my mortgage has been declined once again because I have Fibromyalgia.  Which I find ironic because any time I have been disabled it is from chronic migraines.  Although FMS certainly does not help, I have never taken off work for it.  But I knew I would be declined.

My spouse likewise was turned down.  Two and a half years ago he had kidney cancer, in the first stage, they chopped it out and that is that.  Recently he had surgery on his toe for arthritis.  And I suspected not enough time had passed since his cancer for them to sign off on that, so he was declined for that.  he was also declined because of arthitis.... his toe arthritis.  Insane.  And he is the one I would want insurance on because he is the high income earner.  And therefore insurance on such a large amount is something I want coverage for. 

I do put coverage on everything else though because when I do go on leaves from work it is not a 100% coverage for long, so having some products covered helps a great deal with stressing about my budget.

November Blog Carnival: One Word... Hermit

 "Migraine Disease & Friendship: How has living with migraine disease or a headache disorder impacted your friendships? Has it shown you who your true friends are? Have you made friends or become closer to people because of your life with this disease? Please share your thoughts on friendship & chronic illness."

Chronic migraines have impacted my friendships completely and utterly.  Friendships require a certain amount of maintenance, some give and take and effort.  I have always considered myself to be a very loyal friend and I still am.  However, I have become increasingly isolated from the world.  The only way I actually interact with the world is through two venues: work and the internet.  Work is a source of pride and also the main source of stress and guilt.  However, it does get me out of the house and I do interact with customers and co-workers.  Therefore on the rare occasions I leave the house for social reasons I tend to socialize with co-workers or former co-workers.  If I could not work, then I suspect that would diminish as well.  Not intentionally but inevitably.  I have had in my life some truly awesome friends, the sort that I love to chat with and thrive in their company.  But I rarely have the energy to socialize.  Yes, to some extent that is because working with chronic pain is extremely taxing and there is not much energy to spare afterwards.  Sometimes I am too tired to even go to the pharmacy, which is somewhere I go more frequently than anywhere else.  So I have lost friendships simply by the inability to be a good friend: I have to turn down invitations again and again until invitations are no longer offered.  I could reach out and spend extra time with those friends to make up for the lack but in the end I end up being too tired for the effort.  It has led to some isolation... I refer to myself as a hermit for a reason.  Isolation is not a problem since I am introverted and don't have that innate need to be around people... but I regret losing those true friends.

So I reach out in several ways through the internet.  Facebook is a way to connect with all those good friends I lost on some basis anyway.  I blog to communicate my thoughts and dreams, connecting with fellow migraine bloggers who do the same and we form a certain community of our own.  A sort of friendship I would say.  I go to forums and connect with people there as well.  I write articles and essays on topics I find interesting and put them out there for people to check out and comment on.  I even post my fiction novels chapter by chapter on a blog.  In a way many aspects of who I am are spread throughout the net and combined on my Tweets and so I connect with others who have similar aspects.  It is a way to fill the void I have for the lack of real world friends.

Sort of saw the unpleasant stigma on the other side today

Everyone knows there is a stigma associated with chronic pain.  It sucks but we have to deal with it.  For example my employer told me that other staff members had been complaining about my sick days, which in the particular case she sited that staff member was not.  I was understandably hurt when my boss said this and I said 'not to me'.  But she said there had been complaints.  Which made me feel like shit.  Because at the time I assumed her to be telling the truth which meant that co-workers who I thought understood the battle I go through and expressed sympathy were in fact lying to my face and complaining to the boss.  It devastated me.  Because I really appreciate that they have my back when I need them, because trust me, my employer never does.  Now whether there was numerous complaints or not, the stigma in this example is on the boss not the staff, although in some workplaces it can be both.  In my case, although I am told she sympathizes with my situation somehow, it often is reflected that it is unreasonable to call in sick for a migraine.  Well, unreasonable if you get them chronically.  Not if you get them occasionally, then it is perfectly reasonable.  It is sort of like they want you to feel ashamed for being sick, or guilty that you inconvenienced others by being ill or that since you can work most of the time with migraines then why can't you all the time.  Not sure really.  But I have, in the past, been told several different insulting ways that it is not acceptable behavior.  I'm sure it is acceptable to be ill and to have an incurable disease, just not to actually have it in any way affect others.  I've seen the stigma in several forms over the last decade and I'm sure you have all had your experiences with it.

But today it was not directed at me.  Today we are training someone for another branch and at her home branch she works with someone who gets migraines and she gets frequent absences from them.  She said they all think she is really not having a migraine when she calls in sick.  I told her flat out that I get chronic migraines, that I had on while she was talking to me, and that while I can work with some, I can partly treat some, and I can resort to painkillers for others ... that some days it is impossible to come in.  She wanted to know what medication I am on so she could see if this other lady is on the same.  I told her I take a triptan and preventatives.  But this is stigma on this poor ladies side.  Sounds like she gets frequent migraines herself and that can lead to frequent days off.  And they don't believe she is 'really having a migraine' or that she is really 'calling in sick for a migraine'.  How the hell would they know?  Do they get frequent migraines?  Do they know how complicated treatment is for migraines when you get them frequently?  That would so suck to work with people judging you like that when they have do clue what frequent migraine sufferers go though.  She said this lady, if she had a migraine, would not have been on Facebook it it was that bad.  Granted on the days when I get killer migraines and call in sick I spend six hours of the day holed up in my room praying for relief or sleep... but if I say was on strong opiate painkillers and I used them for those killer migraines and was too drugged up to feel pain, but also too drugged up to drive and work... then maybe I would be on facebook.  It sounds like they really don't believe this girl.  That sort of attitude drives me nuts.  Would they have the same bias if someone had cancer and had to miss work?  Would they think she is faking it for the time off?  How ill do they want someone to be before they believe they are not 'faking' it.

Isn't it insanely funny she chose to talk about that to me?  I was about to tell her that I could not say anything about someone else suffering frequent migraines when in fact I have them almost daily and I also miss more than I should of work.  I should ask for this girls name and then we can chat about the stigma in the workplace.

For once I sure would like to not perplex my doctor

All my life I've had odd health concerns and symptoms but it was not till I was in my twenties that most of those were shoved under the FMS umbrella.  So I got a lot of blood tests and had a lot of doctors and a few specialists confused as to what was going on.  I have some FMS symptoms since early childhood, and joint pain due to hypermobility and a high ANA blood count and some other weird things that led to blood tests every six months and a few specialists.  And they always had a name for whatever it was, but not a reason why they were all coinciding together and some reasons were 'sometimes a high ANA is normal for 1% of the population'.  So you sort of get used to not knowing and then ignoring symptoms yourself.  Which is never a good idea but with FMS it is hard not to, I mean, literally any random symptom you can think of its under that syndrome.  And just because you get a diagnosis, which is its own relief, does not mean it is treatable, so you have to ignore all the same things anyways.  Thats where I first developed my pain tolerance for a certain regular baseline of pain.  But it got tiresome real fast the whole process of mentioning something to my doctor, getting a whole bunch of tests and then getting either 'ain't that curious' or 'It's just FMS' answer.  Now it is usually that is a symptom of migraines and/or FMS answer.  Sometimes I like actual resolutions.  Not everything can be chronic and therefore incurable and usually untreatable... if that were the case doctors would be out of a job because we would all be going to witch doctors to purge our demons.  I'm beginning to think that might have a high probability of working.

So I have some pretty bad numbness in my hands that is apparently not going anywhere.  One would assume there would be at least a definite reason for this and with a reason at the very least a hypothetical treatment.  But no.  That would be too easy.  My blood work came back normal, well, normal for me.  Which means said numbness is not a result of inflammation, vitamin deficiency, hormones or anything else he tested on that long list.  Which means he is 95% sure it is neurological and likely related to chronic migraines, given, it started with one hell of a migraine.  Now as to why that is persisting?  Who knows?  He is passing this one off to the neuro... who I see in freakin January. 

He speculates the stress of working with migraines is difficult (duh) and might be causing the symptom to persist since the migraines are worse in a stressful environment.  He recommended a leave of absence.  But I declined.  Because I'm insane.  I simply can't do another leave of absence.  Granted, not having to work is blissful since the pain is definitely knocked down a notch and migraines are easier to treat.  However, other than decreasing my stress and making my life bearable for a short duration nothing is resolved.  So I get some relief for a short duration.  Nothing actually changes in treatment so when I return I am back where I started.... but of course not really, I am back to whatever position my employer chooses to give me and generally my work environment is negatively impacted.  I can't handle the emotional stress of returning to work.  Such that I would rather endure more pain for greater durations to avoid ever having to be in the same mental place I was last year.  I like that my doctor is aware of how difficult it is for me working like this and I appreciate that is is not minimizing my pain but I can't go through all that again.  It is my life that is being mucked about with when I go on repeated short term leaves and it is my life that gets worse each time.  I mean it may not seem like much of a life, but it is all I have to live.  I told him it would be a stress relief for the short duration that would in effect cause more stress in the long term.  It made me tear up a little, being my dark sunglasses of course, because it would be such a relief from enduring this pain, even for a short duration, but I can't accept it because I know what it is like in the long term and it is just not worth it.  Honestly that is the first time I have ever actively made a choice to benefit others and the status quo while completely ignoring my health.  However maintaining the status quo is easier on me emotionally right now and honestly last year was an emotional trauma that left me bruised mind, body and soul.  No one would ever want to endure that again.  They have to stop playing around with my life like that.  Either I am fully capable of working most of the time or I'm not.  Putting me on repeated leaves does not make anything better for anyone in the long run because it does not change anything.  Of course while I am saying this I do recall this is exactly why I did not go on a leave last year which ended with me getting into a very stressed out place with all that work crap and deciding not living sounded like a much better plan.... after which I was put on a leave.  Soooo... that backfired.  But, that also did not change anything and returning to work after that was extremely difficult, so I still stand by my decision, however stupid it sounds.

My doc did tweak my medication as in he is taking me off the Elivil I was put on in December of last year.  He said maybe all the migraines are bringing out a side effect on that side.  And really there is not reason to stay on it regardless since it did not affect my migraines positively or negatively... and I blame it for making me so insanely tired and confused in the mornings.

He asked me when was the last time I went to the ER for migraine treatment.  I laughed and said I avoid that place like the plague... so more than a year.  No point as far as I am concerned.  It is a horrific experience, it literally takes six hours to endure and there is less than a 10% chance of success.  Besides if I can't call in sick for a migraine (any more than I have, which I admitted is too much by work standards but considering the migraine frequency and intensity lately way better than it could be) then that also means I can't go to the ER for one.  Given it takes so long I can't pop into the ER then go onto to work.  I have done that before but apparently given the possible treatment I get for the migraine the ER doctors don't like that, as in insist I don't, which I feel free to ignore if that treatment was even slightly successful.  He suggested instead in hospital treatment, as in through the day surgery department.  They set up a time and I go in the actual hospital, get hooked up, get the treatment and go.  I am extremely happy with this option.  Extremely.  I get a treatment that might actually bump me out of a freakin daily migraine hell and I don't have to go to the ER?  That is awesome and I am slightly annoyed he did not mention this possibility years ago.

Still... my hands are still numb and I am still weirded out by that.  I asked him what happens if it does not go away and he said sometimes people have numbness that does not go away.  Yay.  Not the response I was looking for, but really, what can I expect?  It is just another one of the weird symptoms that does not fit with my current health issues and is not showing on blood work.  While I would like my doctors to be brilliant like House, if they have no evidence they cannot make a diagnosis.  I will have to wait for the neuro on this one and hope he has a reason for it.  But if he doesn't I might suggest sending me to physio again since when I had referred pain into my shoulder restricting my mobility, which was caused by the migraines and neck pain, that really helped.  And numbness in the hands can occur from neck related pain, although I don't think it explains numbness on both sides.  Still worth a shot.

I don't feel Well

There is the normally don't feel well that I would use if a migraine is bothering me or if FMS is flaring in some way.  And then there is Not Well At All.  Which is this whole numb hand situation, which I am going to the doctor about tomorrow.  But also just Not Well.  Extremely tired, bit of a cold I think and for some reason these sharp pains in my chest which feels like either chest wall pain or lung pain, but since my cold is not that bad not certain where that is coming from.  All in all just rotten.  I missed work yesterday because I also felt rotten, I had a nasty migraine, was so confused by what time it was I was even late calling in sick late and my bloody hands were swollen.  I hope my doc can figure out this hands puzzler.

This is what I'm thinking...



Yep.  I got the Sunday blues cause I know tomorrow is Monday.  Mondays are particularly loathsome because it is the first day of the workweek and migraine hell.  Although I also dislike Wednesdays because after two days of migraine hell I'm totally drained and Wednesday as a result takes a lot of will to get through, or if Monday and Tuesday have been particularly painful, then Wednesday is extremely hard to get through knowing I have two days to go.  But Mondays... definately my least favorite day of the week.

*Sigh*

Okay numb hand syndrome is starting to freak me out.  So my right hand is still numb, except for this oversensitive sharp tingle I feel when I apply pressure to my fingertips.  And left hand is now numb on three fingertips and part of the palm... progressing slowly but consistently.  It is only a matter of time when it becomes as numb and clumsy as the right, which will further restrict my mobility.  Obviously since I have not heard from my doctor my blood work was fine, which means not from hypothyroidism or a vitamin deficiency.  So it could be neurological.  When it was one hand there were some possibilities that made sense, now that it is both, not so much.  I feel like I should go to the doctor again but what is the point?  The CAT scan will either reveal something or eliminate some other possibilities, so I think why not wait till that is over... but then I think maybe I should go back and mention the fact it is getting worse.  I thought it might be the Reynold Syndrome thing that can happen with FMS, but from the way it is described it does not fit the bill.  I can't therefore think of anything I have health wise that is contributing to this.  Anyway, I figure by monday my left will be like my right was originally so I'll check in with that doc again just to update him.

Guilt: Pervasive, horrific and sometimes deadly affliction

Somebody Heal Me:guilt-two-steps-forward-one-step-back is a blog post I can really relate to.  Guilt is the plague of my existence.  The one thing of value I learned when I had to endure a therapist last year was when she questioned why my self-worth was tired up in how productive I believed myself to be.  In other words, I felt pretty damn worthless when I am unable to work.  And damned guilty when I dared to call in sick to work.  And often agreed with any claim my employer made about my absences because I felt guilty for being sick, even though obviously that is one thing that is not in my control.  It is a big deal for me.  I feel like I am not contributing enough.  That I have no purpose beyond my pain filled existence... and who wouldn't want to be more than just 'that chick with horrific migraines'?  I don't want to be defined by my illness, so when the one thing I try so damn desperately to hold onto, a job and one I have compromised a great deal on to have and basically increasing my pain and severely limiting my ability to do anything else, like socializing, well, take that away and what use am I?  What am I beyond the pain?  What point is there to existence?  When I cannot come up with a satisfactory answer then it is a damn heavy burden to feel guilty I cannot even maintain that.  Hell, it damn near killed me.  I was suffocating in guilt and the fact I knew I could not 'maintain' and 'function'.  That somehow I should be able to 'endure' more pain in order to not feel guilty I am hindering or failing everyone.  It makes my life seem so meaningless or worse, that if I did not exist not only would it make no real difference to most people around me but it would actually benefit the lives of some around me... like I am making the lives around me more difficult simply because my health complicates everything.  Because that is how my thought process spirals out of control.  First the guilt.  Then the effort to just get through the pain in order to do what is required of me.  Then the rush of frustration and desperation when I realize yet again I can't be what is required of me, that is the model employee.  The fear that I will be fired, a real fear of course, but with it the guilt of being useless then, in not putting in my share and of being a liability.  Then despair, numbness and depression because the effort in trying is just beyond me.  Then, if I survive that, I usually more into anger and frustration, because I don't have control over my health and I can only endure so much pain, so I tend to get pissed when people make unrealistic demands on me, after I beat myself up about it more than they do of course.  But at least at that stage I am ready to fight again... you need some fight in you to bother with it all.

It is plain idiotic to feel guilty about being ill because the fact of the matter is every single person will get an illness, chronic or curable, and every single person will lean on others in their time of need and every single person will have to find the strength to persevere all on their own.  There are those that will make your life hell and then there are those that you will live for.... and both will make you feel guilty for entirely different reasons. 

Guilt can be so strong because it is not about coping with our illness personally but how it inevitably affects those around us.  Failing ourselves in real or imagined ways is quite different from feeling we are failing our family, friends and co-workers.  Or broadly, society itself.  It is like how I hate to see anyone I love in any emotional or physical pain... how I would willingly take on that pain because tolerating it myself is better than seeing someone I love hurt.  I can handle my pain, most of the time.  I figure it out and do what I can.  It is the guilt of knowing if I were healthy the lives of those around me would be quite different and easier.

There can be times when I feel I am surviving quite well.  I feel good about my progress or about maintaining.  Because maintaining is an impressive feat.  Guilt, however, can smack me down pretty damn fast.  It can just take one off hand remark from my employer or a perceived lack in how I feel like I am contributing less than I should in any facet of my life.  Bam.  I feel that heavy burden to be more than I am physically capable of.  Sometimes this leads to trying to be more than I am physically capable of, which then leads to over taxing myself and feeling defeated.  It spirals down making pain weight heavily on me then I climb back up and for a brief time once again feel like I am willing the battle.

Guilt is sneaky that way.  It can creep in almost anywhere.  Even though we rationally know our limits.  Even though we have made the right compromises for our health.  Even though we do everything humanly possible to maintain a basic existence.  It may frustrate me to no end that people do not comprehend how much effort it is for me to get up and do anything.  How many medications I need to take to be doing as 'well' as I am, even if that does not seem to be that well at all.  But what can be worse is that I can't let myself accept I am doing the best I can without being plagued by the guilt of not being able to be as functional as other people are.  I can't even give myself a break.

It is an illusion mostly though.  People all suffer and so most of us have the capacity to sympathize with the trials of others.  My family does not think less of me for being ill.  They try to help as best they can and if they could do more they would... just like I would for them.  Most people I count as friends, even though I don't have much capacity to be a good friend given how much time I give to recovering from getting through work that I have nothing more to offer, anyways, they know why I am socially hindered.  They don't hold it against me if I can't go to such and such events.  My spouse does not make me feel useless when I cannot work, he does not judge me when I call in sick or have to take a leave of absence.  He would insist I do not work, if I would let him, if I could tolerate the guilt of putting all that financial responsibility on his shoulders... but that is on me, not him.  He does not add to my own sense of guilt.  My co-workers do not think I am calling in sick for just the hell of it and almost all of them have been sympathetic and understanding of the difficulties I have.  All of them are good people.  Granted I cannot say that for my employer who does add to the guilt and seems to like to encourage it... but trust me she should not bother because I have enough all on my own.  Definitely do not need help in that department.  And frankly I should not let someone else judge me like that and make me feel worthless because thier opinion of my struggles should not count.  Odd how that one negative person making you feel guilty for being sick can have such a dramatic effect on our ability to cope, but then not so odd when you think on the fact those people are just verbalizing our own irrational beliefs. 

Anyway if you're having a bad pain day let yourself just be.  Don't place irrational demands on yourself.  Or what you could accomplish if you were 'healthy'.  Or what judgements other people place on your personal struggles, because they diminish your successes as well.  Just be for a moment, without feeling guilty.  We will feel guilty.  Irrational or not.  Coping is not perfect.  And some days are more difficult than others, which taxes us emotionally.  Know it and also know that not everything is in our power or control.  Because if we don't reflect on why we feel guilty, why we should not and what beliefs are fueling that guilt then we can drown in it.  Trust me on that.

Comfortably numb

Well, not so comfortably, but still very numb.  Numb right hand is still very numb, completely.  Left hand now numb on three fingertips and getting noticeably worse.  I Googled the symptom and that is never a good idea and gave me no insights except a lot of things can cause this.  Lovely.  My CAT scan is set up for early November thankfully, but since this is getting worse I am not sure how long I am going to wait before I cave and go back to the doctor.  Because already I am starting to think of unpleasant things that could be causing this and would rather not get freaked out.  Hopefully he gets my blood work in soon.  I told a co-worker if it comes back clear he won't be giving me a call and she said 'So no news is good news then' and usually that would be the case... except I want to know what is causing this so potentially it can be taken care of.... Not one of those elusive symptoms doctors cannot find a reason to so just add it to the insanely large file for future reference.  I would much rather a firm reason and I really prefer something curable since I have enough chronic conditions with no cures.  I would much prefer something like 'oh it seems you are deficient in vitamin B... so take some vitamin B'.  Not 'Oh we can't find a reason so it must by Fibromyalgia related and therefore there is nothing we can do about it.  I suppose you'll have to learn to write with your toes.'

Medicine is the best medicine- laughter only goes so far. I never laugh at peoples remarks about opiate use for chronic migraines

The Scary New Migraine Mistake is an article about migraines.  Guess what the scary migraine mistake is?  The surprising amount of people undertreated? Nope.  The fact that man chronic migraine sufferers feel so let down by their doctors that they have no hope of achieving pain management? Nope.  That some of these people kill themselves?  Definately not, because obviously those people no longer have to manage their pain and are no longer included in the discussion. 

Most of us know for a fact that doctors are extremely reluctant to provide pain killers for unmanaged chronic pain conditions, but will rain a shower of painkillers down on those people with temporary moderate pain.  No it makes not sense.  I did not make the rules.  So this article, is rather the opposite of that fact.... " While no one knows for sure how many migraine sufferers go on to overuse addictive painkillers, the problem is “epidemic,” says Joel Saper, MD, director of the Michigan Headache and Neurological Institute (MHNI), which administers the in-patient program in Chelsea and an outpatient clinic in nearby Ann Arbor. Who’s getting addicted? At the Waismann Method in Beverly Hills, a rapid-opiate-detoxification center, patients undergoing withdrawal from narcotics taken for migraines tend to be “women in their thirties, forties and fifties, with families, husbands and jobs,” says co-medical director Michael Lowenstein, MD. In other words, women very much like us and the people we know."  First of all who are these people getting opiates for managable migraines... and why have I never seen that doctor?  Secondly, why are these people being given opiates and not informed, like triptans, if overused they will lead to rebound headaches.  Maybe I don't want to see those doctors, clearly they are idiots.  Odd that apparently only women are becoming addicted when statistics show male doctors tend to ignore or underestimate chronic pain in women, often going with the 'its stress' or 'all in your head' business.  Makes me wonder how many are not being treated at all.  Plus, lets face it, we have awesome natural pain tolerance.

" “For every patient who truly needs narcotics for migraines, there are about 100 who are getting them,” estimates Stephen D. Silberstein, MD, director of the Jefferson Headache Center in Philadelphia."  Then it goes on to mention triptans, being a very viable first choice of treatment.  Okay, I'm not disagreeing with the use of triptans... hell, I will fight like a screaming mad woman to keep my triptans.  Need them.  Must be addicted to them apparently.  Anyway, what they are really saying here is that patients who have manageable migraines are being given opiates and those with complicted migraines, who are likely using triptans already, are not being given opiates... and therefore there are obviously a vast, vast majority of doctors who have absolutely no idea how to actually treat migraines.  Obviously, triptans, given how they act and are designed, are the number one choice... but when migraines becomes chronic and they cannot overuse them, and are on preventatives, they often need a 'rescue' med which is some sort of pain killer or anti-inflammatory.  Part of the problem is not a problem I face, due to a fine drug plan where I work and a fine health care system... but outside of those parameters?  Triptans are insanely expensive, expecially if you get frequent migraines.

"The problem is that a significant proportion of sufferers experience attacks far more often: 37 percent endure episodes one to three times a month; 14 percent have them two to six times a week; and 11 percent, once a week. A patient downing opioids or barbiturates that often is likely to build up a tolerance that will lead her to crave progressively larger amounts of medication, creating a real risk of physical dependence."  Yep, I am part of the statistic that gets them a crapload a week.  As in occasionally I don't have a migraine.  But, mind you, some of my preventatives help decrease migraine intensity, so not every migraine in mind blowingly acute... thank god for that.  And sometimes my triptan does an awesome job, such that sure I had a migraine, but it went away fast enough.  Still, obviously my treatment is very complex and includes three preventatives, maxalt and tramacet.  Frankly getting dependant on any medication is not really on my radar, I need the meds to be able to manage pain... not eliminate, not put me in a haze, but to manage, as in slighten dampen so I can get through the day.  That does not mean popping pain killers till the pain goes away... or I would likely overdose, nor does it mean take as many as possible day after day until I rebound or they don' work any more.  I want them to continue to work.  I don't want to rebound.  Ergo I juggle triptan use and painkiller use, and suffer on the weekends.  That is that, but it is still a great deal of pain to tolerate day in and day out.  I get that people would be on more and better pain killers, since I know my pain is not really managed at all.  For those of us crippled by pain, where is the choice exactly? 

"What’s more, frequent dosing puts migraine patients on a path to making their headaches worse, not better. Using opioids and barbiturates at least eight days a month can change pain receptors in the brain and make migraines go from being an every-now-and-then problem to a daily affliction, according to a rapidly growing body of research. This is called “transforming,” and it causes a vicious circle: Headaches spur patients to take meds for their pain; dependence and tolerance build; patients require more medication for relief; and the headaches just keep getting more frequent, leading to even more pill popping."  Sorry, it is not 'transforming' when they were already daily to begin with... there is nothing to 'transform'.  In my case I actually think it was the long term without preventative treatment that caused my migraines to go from chronic to daily... so the constant pain caused the migraine pattern to transform.  However, occasionally if a patient is put on triptans, or pain killers, and not told about the risks in using either or both frequently it can cause them to become more frequent.  This is likely why we end up switching medications all the time... to trick our brains.  Anyway, chronic migraines, and chronic pain of any sort, change the way the brain works and we become wired for pain... without any medications.  So with daily migraines being daily no matter what, then what difference does it make if one of the many treatments is pain killers?  Oh, wait, maybe the difference is the patient will not have the sudden desire to kill themselves.

"f there were a magic bullet for migraine sufferers, physicians obviously wouldn’t be prescribing opioids and barbiturates at the current rate. “But the reality is that the conventional therapies create side effects that not everyone can tolerate; plus, no single medication or treatment works for every patient,” explains Saper. “For the most difficult cases, we might have to try 30 medicines, in different dosages and combinations, before finding something that is effective.”"  Bingo.  It is not an easy problem and it does not have easy solutions.  Don't lump everyone in the same damned category when some of us deal with a great deal of pain all the time and are a little sensative when we are labelled drug seekers.  Not that I have ever had that problem per sa.  Most of my docs have been very reluctant to prescribe pain killers and it was only last year after more than a decade with chronic migraines I was put on a rescue med, likely because the emotional impact of the pain was becoming apparent and obviously simply tolerating it was becoming a problem.  Funny story: I once had an ER doctor review how many times I had been in the ER in the last few years and said that since I had few ER visits I was obviously not 'seeking drugs', to which I found sadly amusing because a) I don't go to the ER unless I have had a status migraine for longer than seven days because they treat every migraine the same, and 90% of the time it is ineffective, but occasionally I feel desperate enough to try, and its still ineffective, b) going to the ER if I wanted opiate drugs would be idiotic since they always prescribe toradol, which as I said, by that point is damned ineffecitve, so if I had 'drug seeking' behaviour I would just go down the street to find the people who sell drugs. 

"“For many physicians, prescribing opioids seems like the easiest way to address a patient’s pain in the short term.” Or even the long term. “So many doctors put me on painkillers because they didn’t know what to do with me. I ended up on those drugs for 33 years and never improved,” says Stebbins, who has been narcotic free since her first stay at MHNI three years ago." Don't blame the patient for doctors perscribing painkillers and being reluctant to perscribe triptans, those doctors have no clue what they are doing, since I have found it to be the exact opposite.

90% of us with complicated migraines are doing all of the right things.  Often we learn the hard way, try several doctors to find one who has different options and do our own extensive research to figure things out.  Most of us use triptans, as much as we can, assuming we can.  Most of us have tried dozens and dozens of preventatives and continue to do so.  Some of us, eventually, get some sort of rescue med, even if it is T3's, to help manage the pain when there is nothing else that cannot be done.  Most of us do not get any sort of rescue med.  Most of us juggle our medication as best we can and are wary of overusing them. (often learned the hard way as well. I had a doc who told me to take a triptan every single time I was getting a migraine, even if it was daily and that led to a brutal rebound headache. Thankfully, I did my own researching and learned that was not such a good idea).

This article ticks me off by saying opiate addiction in migraine sufferers is a bloody 'epidemic'.  If anything most of us are undertreated until we find the right neuro.  Most of us are bloody well suicidal before we are offered a mild pain killer.  It just makes doctors that much more reluctant to prescribe them when they are needed, when clearly the message should not be that we are all drug addicts but that doctors are poorly trained to handle any migraine sufferer, let alone those of us with chronic migraines.  Must we always be the ones to suffer because a doctor's ignorance?  Apparently so.  I want them to write an article describing the effects of those of us who have been undertreated for migraines.  Those of us whoose pain is not well managed.  I want them to write an article about the depression and suicide statistics when it comes to migraines... directly related to the lack of treatment by doctors and ER staff.  How many people have to die before that rates an article or anyone's notice?  But no, it has to be that some people are being given opiates when they should not be and some people were not informed of the risks and some people were not regularly monitored in regards to their medication use because of their doctors ignorance.  Well, those people had doctors who sucked balls and obviously needed a little training.  And we have all had our share of such doctors.  I've had doctors say there was nothing that could be done for me.  That they had tried everything available... when I knew there were literally hundreds of preventatives to try.  I had one doctor tell me that she could not give me a painkiller for my status migraine, never mind that I did not ask for one, and suggested I 'take a hot bath'.  I cried when a doctor told me there was nothing they could do... I thought I would never have any relief.  Not even the hope of it.  I changed doctors, found a good neuro and now I do have some hope I might find the right preventative.  So doctors that occasionally overtreat some patients because of laziness or ignorance does Not Even Compare to doctors who undertreat for the same reasons.  Those of us with chronic migraines somes Live only because we have some hope.  Don't make them even more reluctant to consider all available options.  We need options.  We need hope.  Don't take even that away from us.

Anway clearly this article should be called "Epidemic of ignorant doctors leads to migraine mismanagement"

Bad pain day ending a bad pain week

You know I sort of lose track of how much time I lose when I am in a bad pain cycle... but I know it has been for a bit now.  Just violent long lasting migraines.  They are making me mind numbingly tired.  For one thing they are all acute, so acute migraine + work = take a triptan ASAP.  Unfortunately, the environment ensures that triptan cannot do its job all that well and in order to survive the rest of the day I rely on barely sufficient pain killers.  Anyway, triptans can only be used three out of seven days in the week, so that leaves two really sucky work days where I have little to no treatment.  Just plain bad.  Not the sort of pain I would wish on my worst enemy, unless that enemy is making it harder for me to endure the pain in which case, yeah, they would benifit a hard lesson in compassion via feeling the same pain themselves.  Being in this much pain is so draining on me physically and mentally it is probably a good thing I don't have the energy to form any sort of emotional response.  You just kind of get numb and just get through what you need to.

However, just because you are not flipping out or screaming does not mean a boatload of pain has no emotional consequences... it just means there are potentially erratic emotional outbursts.  Like when I was listening to that song by Coldplay 'Fix you' and burst into tears with a deep emotional response.  Maybe cathartic.  Or when my boss said I should appolagize to a coworker for missing work last Friday, because she is a valued employee she does not want to lose and I caused fustration and stress by not being there.  True.  Very True.  And I damned well appriciate it.  But for a moment I was just blindsided by the overpowering guilt and shame for being in too much pain to function that I had to look away for a moment, choking down emotion and tears that wanted to surge forward.  Sure I was a little peeved about the insensitivity of the remark, but what this shows is the fragile emotional stability we can have when pain has been particularly bad.  We are on a fine edge during these times.  I know I have to be careful because it is the time when I could make poor choices based on how deperate I am for the pain to end.  So then I listen to that 'waving flags song' and it makes me feel a little stronger ... 'When I get older I will be stronger, they'll call me freedom just like a waving flag'. And, yeah, my stupid hand is still numb. That makes a solid week. I'm doubting my docs prolonged aura theory. I did make a neuro appointment... in mid January. I rather hope the hand thing will be resolved before then.

Just couldn't be easy could it?

My right hand is still numb and uncooperative and clumsy. Although having an actual physical manifestation of how brutal that migraine is sort of interesting. Maybe it will give those morons who think chronic pain is not a disability something visible and tangible to grasp the illusive concept. Because of course 'just pain' no matter how severe is apparently not sufficient to be classified as a disability, even though migraines and/or FMS are certainly not 'just pain' anyway. Migraines have caused me to lose my vision, severely limit my vision, lose my hearing, severely limit my hearing, caused angina, made me pass out, throw up, tremble, speak in tongues and to be about as close to brain dead as possible... but still, not considered a disability. I would like to take those people for a long drive on a bright sunny day when I can only sort of see out of one eye and kinda hear out of one ear and have no depth perception while the objects around me warp and shift... and if they would feel perfectly calm with me behind the wheel then maybe they have a point, otherwise, I stand by my moron comment. So saying I had a violent migraine that caused my hand to be mostly numb might be classified as 'physical' enough for those people to shove the idea of it into their narrow little minds. But not likely. I suspect the more probable response will be that some random facet of my lifestyle has caused this new symptom. Maybe I over-exerted myself by mentally bitch slapping them.

By the way I have PMS. I'm a little ranty. I can't help it. I had some chocolate but I'm still snarky.

Anyway, aside from that little rant I went to the doctor. Not specifically about my hand mind you, because it is just numb and numb doesn't rank high on my meter of urgent medical issues. But I needed med refills so I thought I would mention it at the same time, because obviously this is a new symptom and one that did not go away like a normal migraine aura so the sort of thing you need to discus with a doctor. I was thinking it was likely a pinched nerve because all that neck pain does migrate. I was thinking I ought to be a little worried, given the possibility of having a stroke, while having a migraine, and being completely unaware of the fact. Anyway, not a pinched nerve. He thinks it might be an aura symptom that is prolonged, given I have almost dayly migraines and while that particularly brutal migraine did end Friday night while I slept, I did have one Saturday evening... so having a migraine hangover ran right into the aura phase of the next migraine, ergo, possibly it is a persisting aura. I am not sure if he is right about that, but if he is that really, really sucks. Becuase I do get a prolonged visual migraine aura, that of visual snow which is always there to one degree or another and has been for the last twenty odd years... and the idea that my right hand is pretty much incapable of doing anything for twenty years would really suck balls. So I am thinking optimistically it is just a delayed migraine aura and might just fade soon. Hopefully. Just plain odd though. Migraine auras can be very trippy and down right freaky... but they don't persist.

However the fact he did not just brush it off as a migraine aura makes me wonder if that is in fact what he thinks it is. Instead he is sending my for another CAT scan, insisted I make a neuro appointment which he will send a letter directly to the neuro to update him and is sending for a slew of blood work. I can't help but wonder why he is doing so... as in what does he think it could be that he is not telling me because it is not as likely? Fortunately I'm not too worried. This sort of thing happens all the time with FMS. I get some troubling persistent symptom that flares up and eventually I mention it to my doctor who says it is likely just an FMS flare of that symptom but sends me to for a bunch of tests, some rather unpleasant, to rule out other possibilities because there is always a chance it could be something else. You just never know. Hell, maybe persistent numbness is a FMS flare and was just coincidently flaring at that migraine, and sometimes, since they share triggers that is in fact the case. And maybe it is just a weird migraine thing. I honestly don't think another CAT scan is going to prove anything one way or another. Except it will prove I still in fact have a brain. He did say the MRI I had a couple years ago was not normal... not completely abnormal or they would have actually said something to me, but unusual. I likely had a migraine while getting it so I would hardly expect it to be normal.

Anyway I don't like persistent neurological symptoms. Last time I had an FMS flare I was in a boatload of pain for a year and a half... you'd have to go back in my history here to find it but it was tendon pain in my wrists that made putting any pressure on them very painful and I went through wearing a brace on both of them while sleeping to help with the pain during the day... then it went away in the wrists and began in the tendons on the bottom of my feet which quite literally hobbled me. Neither of those were actual conditions, like carpal tunnel or anything, just an FMS flare... appeared, on both sides for no reason and just as randomly disappeared. That is what FMS is like. A bundle of symptoms that fluctuate in location and severity, but with a baseline pain all over all the time. Because it is not a syndrome in the muscles, but the brain, so it can fluctuate quite a bit. This numbness? It sucks and it is limiting, but it is not painful so I will tolerate it... unless it spreads or lasts for an unusually long period of time. Or maybe my head will go completely numb, like all over Botox and I will not feel any pain. You never know.

Thanksgiving day... for us Canadians anyways

So things to be thankful for....

1) Being alive is always a good one.

2) That my family is doing well is definately number one.

3) That it was a long weekened which was a nice breather and I got rid of that uber intense migraine

4) That whatever the hell is causing the numbness in my hand is not affecting my entire right hand, given I am right handed.  So I can still type with my thumb and one finger, which is how I type anyway, that I can still write, or at least not any worse than I usually do, and I can still point, which comes in handy and when i forget the word of an object.  My pinkie is the worst affected and really how often do I need that one anyway?  Until this goes away I might not be able to pinkie swear but I can still do a good game of thumb wars.

5) That it is not snowing here yet and the weather is just that right state of gloomy to be nice on the eyes.

6) That it is very near the end of the fiscal year at work and I made it through with only two days over what they allow... which given the frequency of my migraines is pretty damn good and I might as well be thankful for it because no one else is.

Fibromyalgia and migraine medications

Always nice to have a combo medication... considering we are on a boatload for chronic migraines.  Used to be FMS was just not treated.  Sort of the 'suck it up, buttercup' approach, which I for one did not appreciate.  For some reason when you are in loads of pain whenever you do anything you tend not to do anything which then increases the pain... and those of us with FMS just have to muddle through it and find our own treatment plan.  Now there are three meds that can be beneficial for FMS and can be used, off label, for migraines.  Kind of nice when you figure in how many  migraine 'preventatives' we are on, we might as well take one that helps with our other chronic pain.

1) Lyrica- the one I am on now.  And it actually works for FMS, as in I can walk more than fifteen minutes without increasing crippling pain, and pain does not endure as long.  So I like this one.  Whether it has helped me with migraines is debatable but my neuro left me on it because it is good for the FMS

2) Cymbalta- I was also on this one for a time, because it can be combined with Lyrica.  However it is an antidepressant and for some reason those meds mess with my emotions in the wrong sort of way and therefore could have contributed to my trying to off myself and thus was taken off it.

3) Savella- I've never been on this one but it can also be combined with Lyrica and I am interested in trying it.... because also good for FMS and migraine potentially and it is one of those really rare meds that has the potential side effect of weight loss, which would be nice, since I gained 15 pounds from Elivil and have no lost it yet. 

Other non-medical things to help with migraines and FMS are:

1) Good sleep- which is a big problem since insomnia is a big FMS symptom for some of us and sleep deprivation is a migraine trigger.  Personally I am on a sleeping pill cause my doctor said I was in a constant state of sleep deprivation which was constantly triggering migraines.  I get far less mind blowing morning migraines these days.

2) Lots of water- Gotta keep hydrated, especially if you have issues with FMS IBS and/or migraine nausea and all that biz.

3) Mild to moderate exercise- not running a marathon or weight lifting mind you... more like a little bit of yoga when you can and try to slowly increase the amount you can.  Maybe it won't help with pain... but you'll be more limber and that's something.

4) Magnesium- there are in fact many vitamins and herbs beneficial to both or either condition but one big one that is in common is magnesium.  I find taking it regularly prevents those pesky muscle spasms and cramps... that by the way you can get in any muscles not just the legs... I had one in my back that literally tossed me off the bed.  Not nice.  Plus I was getting those nocturnal jerks where just when you are almost asleep some muscle group like the arm, neck or legs violently spasms you awake.  I very rarely get those now, which is nice because nothing is more annoying than almost freakin falling asleep after hours of trying only to jerk awake again.

Weird symptoms... how I loath them

So after my wicked Thursday/Friday migraine of which I remember little of... I have this persistent numbness in my right hand, or specifically three fingers and half my palm.  Like it fell asleep and won't wake up, but not completely numb.  Since it did not go away with the migraine it is hard to blame the migraine for it, although we do sometimes get numbness and tingling in the hands, feet or face.  I used to get that bad as a side effect from Topamax.  Anyway it is a concern.  Could be a pinched nerve... all that pain does a number on my neck, which then migrates to my shoulders and down my arm.  That can get serious enough to restrict mobility, as I can attest to after having six months of physio therapy to correct that compounding problem a few years back.  What concerns me is that it could be a symptom of a TIA.  I always said I'd be the last person to know if I had a stroke, because all those symptoms are what you tend to get with a migraine, especially the wicked ones.  I did not notice any difference myself in that migraine, except maybe it's intensity.  But since I was sick on Friday it's not like I can ask anyone else if I was speaking or walking funny.  I did have some balance issues, walking into walls and such, but that is not out of the ordinary.  I had an intense warping aura but that is also quite common.  My vision was obscured, on the left side, that day but that went away.

I have to make a doctors appointment for medication refills anyway so I can obviously mention this.  But if it was a TIA I am thinking I ought to go to a walk in clinic and just check things out... but I hate the walk in clinic, not as much as the ER, but close.  So, you know how it is, I don't want to make a fuss about something that might just go away of its own accord.

Some migraine symptoms like this can be frightening, I think in this case, it is just the persistence that worries me.  But I have had some wicked silent migraines with the whole right side of the body numbness that freaked me out big time in the past.

Phew, broke the migraine

Broke that migraine from hell last night, finally.  Although three of my fingers on my right hand remain numb... I rather hope that goes away.  I did get another migraine today, but it was a different migraine and so far a manageable one so that is a big difference.  It has been a long, rather bad season of migraines lately.  Maybe they will get a bit better now that it is cooler.  Sure would be nice to predict these things.

I lost another day

I did not misplace it but nonetheless it was another lost day.  Statistically I do wonder how much of the year we lose to just surviving pain. I'm sure I actually really don't want to know the answer to that.  Facts make me sad.  Today was spent suffering the same intense migraine as yesterday, so it was a waste of a day and I did call in sick to work.  But I don't feel as guilty as I usually would because the pain was that bad, such that no sane person would think about moving.  We just lose days sometimes.  We lose hours and minutes quite often.  We miss parties and events.

Funny how when we are in intense pain time is infinitely slow but when you look back you have to wonder where did the day go?  The year?  The decade?  Because the normal things that would define time passing are either not there or blurred by the pain.  It can be depressing but I don't feel like being depressed right now.  My head aches too much for the effort to morn another lost day.

Off the chart migraine pain at work...

These days I usually develop a migraine right around 1 pm and I am already at work so I treat it as best I can and carry on.  Sometimes I get full blown acute migraines in the morning, of which I am far more likely to call in sick from because the motivation to move is really not there.  Today I woke up groggy and stupid, running late for work with a slight ache in my head.  I had an acute migraine yesterday, but well into the evening and it responded quite well to my triptan.  But my lungs and heart did not respond so well to that triptan, so I have those achy chest pains and naggy breathing issues that likely compramised my sleep.  But I got to work fine.  I got through the first hour or two fine.  Then one of those horrific monster migraines hit.  So intense I could barely take it.  When I drove back to work after lunch it was so insanely painful, the slowing down and speeding up.  I should not have been driving but I took my triptan and I could not exactly not go back to work... that is frowned upon.  The triptan did absolutely nothing.  I could barely move my head let alone think.  So I took a tramacet just to dampen the pain enough to tolerate moving my head... it still hurt like hell and movement was still sharply painful but just better enough.  It made the day very, very long.  I got a bad case of the yawns, as my brain really just wanted to hide in a nice dark place and sleep.  The pain roared right back up a couple hours later and needed another pain killer just to get through the day.  Then another when i got home.  Thankfully it has gone down from a 9 to a 7 and I can handle a 7, expecially since tommorow is Friday.  I really, really never want to have to work in that much pain again.  I mean there are good pain days, once in awhile, and there are bad pain days, most of the time... and then there are nightmare intense pain days.

It doesn't help that I have taken my triptan two days in a row, thus aggravating those nasty side effects that make me need to take my inhaler... but, by the way, I would rather have some moderate breathing issues at work than an acute migraine.  I have a desk job, I don't need to breath all that well to sit there.  Obviously it is a concern and maybe I will reluctantly mention it whenever I get a hold of my neuro, but only if I am confident he will put me on a different triptan.  Anyways, can't take my triptan tommorow or those unpleasant side effects will become an issue all on their own.  So I damn well hope this migraine kicks it tonight... or I am going to see how many pain killers I can take and still have half a brain left over to work.  Today the pain itself made consentration very difficult, but once I knocked it down a tad I was amazed I was able to focus on my customers clearly enough to understand what they are saying.  It is astonishing how much pain we can handle when we feel like we need to... but only if we feel like it will go away soon.  A few days of a migraine like that and I would contemplate knocking myself unconcious with a hammer.

I had a grusome thought at lunch time while I was building up the courage to go back to work.  I remember this silience of the lambs movie, the third I believe, where lector has this captive and he cuts off the top of his skull, exposing the brain... and because the brain itself has no nerves he cuts out parts, fries them up and feeds them back to the victim.  nasty image.... but I would contemplate self brain surgery to cut out wherever a migraine starts.

I feel positively proactive...

or desperate.  Or desperately proactive.  You know, when you decide to do something completely random on the off chance there might be a benefit to it?  That sort of proactive.  Like I said earlier I am being regular with my magnesium supplements, plus the vit D my neuro recommended, and really that is something right there.  However, I also decided to tweak my dietary habits, as in develop some good habits.  When my migraines get severely chronic as they have been for too long to ponder, I tend to have the exact opposite of an appetite.  Plus since chronic migraines can cause some severe symptoms, digestion wise, it was better to not eat all day than to eat, feel extremely bad and possibly need some pepto bismal that I have stashed in my office.  Food had a way of making me feel way, way worse in an environment where I simply could not feel worse than I already was.  But of course that meant I was only eating supper, which was fine by me, but health wise it is not a good thing and possibly a migraine trigger.  I have no clue if eating one meal a day in the evening is personally a migraine trigger but I do know if I want to cultivate better eating habits it is the first and foremost habit I need to overhaul.

So I have been trying to eat every three hours.  Sounds easy.  Most diets mean eating less so this should be easy peasy, right?  Except for the small problem that eating, anything, still makes me very ill to my stomach at a bare minimum.  It is not what I eat certainly, since I have no appitite I tend to go for bland and because migraines can do a number on me digestively I also tend to go for fibre.  And it is not how much I eat because when it is recommended a meal every three hours I consider a 'meal' to be a snack bar.  I have been doing it for the last few days anyway, aiming for different types of foods, maybe a yogurt of lunch, that sort of thing.  Also adding in cranberry juice or water in place of a caffiene free diet coke... figuring might as well cut down on that while I'm at it.

I don't know... seems to ironic that I stopped eating during the day because of migraine symptom severity and yet some people suggest doing so could be causing migraines.  But didn't I have the migraines first, which altered my habits in the first place?  Well, that is why it is a change that could possibly have a positive effect, but health wise it is better for a person it eat this way, just may not be benificial in the way I want.  But then yoga, which I do about three times a week twenty minutes or so, is supposed to be good for FMS, muscle health wise and just plain movement wise, but really, it just means more daily pain.

All I'm saying is Food is the last unconquered potential migraine trigger.  So I figure start with the basics and then I can tweak it from there.  So adding small snacks every three hours of fibre, protiens and so forth are good additions anyway.  I still cannot do breakfast though... the very thought of food in the morning makes me ill.  Blah.  Best I can do is within three hours of waking up.  Seriously, my stomach hates me right now, so this plan is already sucking.  I am rather hoping it will just get used to it.  Plus... just so you know... never take magnesium on an empty stomach because That does not feel good at all. 

It's all about semantics

We often apply words to ourselves that define our battle against chronic pain.  There is a lot of power in words and it can define how we react to our chronic pain experience.  I mean, sometimes I react quite well and other times, not so much.  I bet if I asked right now for one word to describe your existence with chronic pain one would occur to you right off the bat.

  For example this post on migraine. com cursed: migraine in a word.  I can relate to that, as most of us likely can.  We do feel cursed with the burdan of constant pain.  I myself often feel guilty about being ill, as though somewhere the fault is mine... or the inability to always suffer with a smile is my weakness.

Sometimes I am a little sensative about the words applied to me as well.  A family member recently said, with good intentions I expect, 'You can decide to be a victim or you can decide to be happy'.  This irked me.  First of all, I think we are all aware that pain does not neccesarily mean miserable.  Maybe if it is temporary pain sure, but being misrable all the time... not so productive.  We can laugh and smile and do all sorts of things when we are in pain.  I don't like it when people assume this means I am 'cured' but certainly encouraging a good mood does a great deal of good.  And truthfully I decided long ago to 'be happy'... not that it is easy, or always there, but I cultivated a certain attitude that dulled my usual sarcasm and negativity, out of neccesity, because my mood was making the pain at that time hard to deal with.  The pain now is a great deal worse than then, so it is a wee bit harder to maintain, but still the effort is worth it.  That is not the part of the phrase that bothered me, it was the word 'victim' that put my back up and I immediately thought 'I'm no one's victim'.  Because I loath the word.  It takes all the power from us.  And maybe we are delusional to think we have even a little bit of control but to just admit defeat and say we are 'victims'?  No, I can't tolerate that.  We are not victims of our disease... we are survivors.  Every minute of every day... we survive.  I often refer to pain as a war; we win some battles, we lose some, we gain ground and we retreat... there is no victory, but neither is there defeat.  Victims just lay down and take it.  So, I loath the term.

Sure we are not always rational when we are in acute pain.  We do not always make reasonable choices when we are in acute pain.  But then we are human, just like everyone else.  Intense pain causes a chaos of emotions that can lead to errors in judgement.  The thing is when the pain level drops back down to a reasonable level we pick ourselves back up and we fight the good fight.  And that makes us survivors.

There are many things I hate about chronic pain.  Things like the stigma we have to deal with, that just add to our burdan.  I often mention my difficulties with work in that regard and that is not going to go away.  There are the fustrations with our doctors and our treatments and that is not going to go away.  There are the profound difficulties in functioning and how we must make difficult compramises to survive and that is just the facts.  What is difficult is not letting other people's judgements and labels stick to us... because they do over time.  But to some extent how we view our own battles, and the labels we impose upon ourselves, defines how we live with pain.  I like to think every damn one of us who suffer chronic pain of every sort are warriors.  We fight a battle no one can see.  We survive torments no one can understand.  And at the end of the day we keep going, moving, fighting and surviving.  So never judge yourself too harshly, sometimes it is better to retreat for a time, sometimes the wounds are a heavy burdan, but we live to fight another day.

October Blog Carnival



Scary Migraine Episodes: What is the scariest migraine attack you've ever suffered or witnessed?"
Well, I've suffered a few sacry ones worth mentioning, for different reasons. Some might think it was the migraine that drove me to suicide, but no, that status migraine was just as bad as every other one I get in a month.  The ones I think are the scariest are the ones that are out of the ordinary, such that I think something must be wrong.

1) Silient migraine: Oddly enough one of my scariest migraines was a silient migraine and that is what scared me.  I had intense aura symptoms, including tingles on the left side of my body and some numbness.  I thought it was possible I was having a stroke.  So that was freaky.

2) Chest pains: I've had some migraines that come with chest pains, mostly due to the triptan use.  Once though it started with chest pains that were severe, left me feeling dizzy when they stopped and gave me a killer migraine.  I was told it was angina pain, but man, that is not a migraine symptom I would like to feel again.  It felt just like a heartattack.

3) 10 on a scale of 10- I had a migraine that I consider to this day to be the 10 by which I rate other migraines against.  It was one of those migraines I call a monster migraine.  Starts real fast, speficially located pain, and a sharp elextrical pain in the head... that is severely aggravated by movement, such that when you move even a little, you have increase the pain.  The very first one of these I even had it laid me out flat.  I was on the couch and could not move my head let alone get up... which I desperately wanted to do so I could wake up my boyfriend and have hime drive me to the ER.  I lay there for hours, could not sleep, could not move just crippled by the pain.  By the time dawn arrived I was going nuts with it, then it moved on to extreme nausea and abdoninal cramps.  I made my way to the bathroom, causing again more migraine pain and just got sick over and over again.  Eventually I staggered to bed, and almost passed out.

Dr OZ Chronic pain Part 1

Check out Doctor Oz!
Is your doctor taking your pain seriously? New discoveries in the field of pain management suggest that chronic pain is an actual disease. Dr. Oz ...

Dr OZ Chronic pain Part 3


Is your doctor taking your pain seriously? New discoveries in the field of pain management suggest that chronic pain is an actual disease. Dr. Oz ...

Dr OZ on chronic pain Part 2


Is your doctor taking your pain seriously? New discoveries in the field of pain management suggest that chronic pain is an actual disease. Dr. Oz ...

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