Dancing on thin ice

You know it all circles around. I have made numerous compramises for this chronic pain, many career changes, not continuing my academic studies. You always get to that point where you are forced to alter your life because of your health... until you become a hermit. And it is always difficult, but in the end you put up with it because the change is benificial, as in less suffering. I really thought I would not have to do that again, because I landed a job that is desk work, no shift work and while interesting does not require the full capacity of my intellect on a daily basis, so typos and completely unreadable handwriting asside, I can still do my job effectively with a mild to moderate migraine. Certainly I had less troubles coping when I had abortives. It was all down hill without the abortives. If becomes exceedingly hard to cope when you cannot get rid of the pain or the aura symptoms. It rapidly goes from problamatic to impossible, no matter how hard your doctors scramble to find something to help out and no matter how accomadating your employer is. In the end no one is happy, least of all me, becuase I am in a situation I cannot fix and cannot tolerate.

So my employer has explicitly told me if I miss one more day I will be either fired or I offer my resignation. She says she would not like to fire me and by doing so it would affect me unemployment insurance. I am not worried about the unemployment insurance because a) I can get medical unemployment and b) there are jobs a plenty around here, so getting hired is not hard, although keeping the job would be equally difficult at this point. One of my co-workers suggested that I seriously consider another work leave, as then I can keep my job and my place in this chosen career field and hopefully find a resoultion. So really here are the problems:

1) I cannot stop a migraine from happening, nor abort one when I do. I am basically gaurenteed three migraines a work week, but maybe more, and obviously I cannot predict when.

2) I can very accurately predict hormonal migraines, and they last at least a week and are very acute. However, I also get painful PMS symptoms. I can't take two anti-inflammatories at the same time and as a result I get very sick with the whole nausea/digestive issues and the pain is not well managed. And I cannot choose the med my doc puts me on, or overcome her reluctance in giving me pain killers... so this time of the month is a citical time and no matter what assurances I make that I will go to work, it becomes impossible with that sort of onslaught of pain.

3) There is nothing I can do about the aura symptoms. My vision can be very impaired, at least recently that is the case. I have ringing, thrumming all the time and occasionally hearing loss. I have problems with concentration, typos, writing, speaking and walking. All of these are important factors no matter the level of pain and thus there when I am at work.

4) Morning migraines combined with sleep disturbances make it very difficult for me to function in the morning. I have a sort of intense fatigue, I am mentally not there and the pain gives me all the more reason not to do anyting when the arthrotec does not work right away, or at all.

So what solution is there? Well the one I offered is at best a weak compramise. Keep in mind my boss wanted me to train for a position that is needed due to staffing issues and now she cannot because I am not dependable. So she is not pleased, nor are my co-workers and the added guilt makes me feel just dandy. So I offered that I continue to do the job I know well with some altered hours. Starting a little later, so that when I get up at the same time in the morning, I can take my med right away and by the time I need to go to work, I assume it would actually be working. I said I would talk to my doctor about a additional med, even T3s or something, to add to the anti-inflammatory so that even if I am at work and I have an acute migraine I can take enough meds to dull it... and this is not a great option, but it would work as a band-aid and I don't get side effects from pain killers, so it will not make me any more fuzzy headed than the migraine itself. I even suggested at the start, I don't have morning appointments, that I do calls or paper work instead, thus reducing the risk of morning cancelations.

While my boss accepted this solution, dependant on my doctor and her advice, it really depends on my head, which obviously has not been dependable. But I want to keep working as I want to establish a routine and I don't want to sacrafice my position or career. I need to just maintain. Just last until some better treatment is offered. I am not really hopeful or depressed at this point, rather numb and detached.

On the plus side my eye doctor said my eyes are perfectly healthy (and at this point that is somthing). I have a extremely mild astigmatism and slightly near sighted on the right side. I don't need glasses. Unfortunately, it would have been better if I did need glasses, because then, I would be able to see. The visual snow is intense and in certain lights it is imensely sparkly and warpy, in other lights I can barely see and everything is hazy and grainy. Even close up there are the sparkle, the double vision and this problem with focusing, so that the more I look at a letter on a screen the less I can see it, it kind of shimmers. And then there are the normal auras, the blotches of blue or white that appear and disappear, the warping blue/black at the lower and upper part of my visual field. I read up on this prolonged aura a bit and there are some particular drugs that might decrease it

It is like a paradox, no matter how you look at it is is imposible for me to work and impossible for me not to work (the whole unable to pay bills and all that). So try my compramise and hope works, or get fired, or go on leave again.

All the misc stuff

Not everything has to do with migraines. Some of that neurological jumble is the FMS, much like the migraine aura stage. So when I forget the names of objects, mis words up, transpose letters and numbers, confuse left with right... that is all actually the FMS. Sometimes I can not tell if it is a migraine coming on, or just one of those days. Some days I find it difficult to pick out voices if the back ground noise is distracting and sometimes a migraine aura is my hearing becoming muffled.

Here are the areas FMS effects:

Sleep disorders (e.g., restless leg syndrome, sleep apnea)
Gastrointestinal (e.g., abdominal pain, bloating, gas, cramps, alternating diarrhea and constipation)
Numbness or tingling sensations
Chronic headaches (may include facial and jaw pain)
Heightened sensitivity to odors, loud noises, bright lights, various foods, medicines, and changes in weather
Painful menstrual periods (dysmenorrhea) and painful sexual intercourse (dyspareunia)
Frequent urination, strong urge to urinate, and painful urination (dysuria)
Rapid or irregular heart rate, and shortness of breath
Sensation of swelling (edema) in the hands and feet, even though swelling is not present

(Info)

So when my eyes have been acting up, aside from the visual migraine aura, it is not neccessarily migraine related, or even physical, rather it could be just the FMS. A lady at work made a comment that I seem to be having troubles everywhere and I tried to brush of this visual issue by saying it is mostly migraine related issues... but there is only so long I will be able to pull off blaming everything on migraines without sounding like a hypocondriac. While I believe it would be a good thing to inform some people at work I have FMS, even acknowledge how it affects work, I don't really want to. It leads to explaining it all and having too much advice and sympathy or the opposite and no understanding of the complexities. What is in a name anyway? They all know I have migraines, hypothyrodism, chronic insomnia and asthma... what difference would it make if I said I have a syndrome rolling all those into one condition? I think the thing is, that it makes no difference if people know or not... it does not change my functionality, my pain tolerance or my treatment or lack there of. Besides I am a great deal better at pretending I am feeling half decent when people are not actually aware of how much pain I am in, otherwise you have to be honest and can never really get away with saying you are 'fine' when you look tired and strained or are walking a little off or speaking a little wierd.

That is the thing about invisible disabilities, is that they are so darn invisible. You can pass as healthy, if somewhat sickly with random disorders that seem statistically off for the average person. You do not have to tell any one, so you don't have to worry about discrimination, yet at the same time it does affect work and there are things in the work enviroment that can improve the situation. But you naturally, after a dozen years, begin to find ways to cope with the communication issues, the pain issues, consentration issues and memory issues. Tricks of the trade, all part in parcel with living with FMS. Yet I have never been comfortable with the whole bluntly honest about my daily physical state, because by doing so it makes it harder to lie to myself and makes it all that more real and tangible... very much like how working with a moderate migraine is actually easier than sitting in silence with a moderate migraine, cause when there is no distraction and nothing between you and the pain, it is quite a bit more present in your mind.

No one wants to be part of office gossip, but I know if I told one person it would just get around, so would rather not go there. However, I really would like to get rid of the florecent lights in favour of the ones that mimic sun light... and I believe if I was classified as a employee with a disability I could swing that.

Ah, the migraine made me do it

The migraines, which are more sudden but not as long lasting since the daily arthotec dosage, have been messing with my head. I get these ideas to do things in the middle of the night, that seem rather odd in the morning. And I have been quite befuddled in the morning, because due to my random activities, have not been sleeping. So befuddled, confused, drunk looking, stumbling and not seeing very well.

It had been a bad few days with the whole not smoking thing combined with the weather thing plus the horrific hormonal migraine thingy... all conspiring to make me have a nervous breakdown because I am not par on my work performance lately, the more I try to be, the less I am and the less I want to take that promotion the boss seems inclined on pushing on me. So I have a appointment to chat with her tommorow whereby I will apolagize for something I cannot control, express my firm and earnest desire to be present and functioning and still manage to feel both useless and as guilty as a teenager skipping class.

So I would have to say todays migraine, which thankfully did not hit until much later is the reason why I have smoked 3 1/2 smokes. I have to say in my defense that is not that many and that I really did not enjoy them... icky really. Something about pain brings out my self destructive nature... you know, the sort of haphazard concern for your health, because you already feel like crap all the time and have no desire to change eating habits or bad habits to prolong the whole crapola-ness of it all. However, it is a counter productive attitude, because although smoking seems to calm me when I have a migraine, it makes the asthma thing worse, which makes me extremely fatigued, which in turn causes headaches... all just a slippery slope.

I feel crabby. I feel tired. This migraine is not going to go away, since I have nothing to take to make it do so. I want some refreshing sleep. The courage and strength to get out of bed. Some clarity when I get out of bed, so I am not confused at how to put on a shirt and what I was doing. I want to go to work with a false smile and hoepfully accomplish something worthwhile, to keep be busy. I want my boss to understand I am lagging because I do not want to do the weeks of training and months of learning... I just want the job I had, manageable, easy, but enjoyable. You can't force ambition on someone... expecially someone who because of these chronic pain condidtions has learned the ability to deny herself any such career goals in order to appease her poor health... pushing usually means, struggling for a long time and then just crashing into more pain than I can handle. Is it so hard to understand I don't want to go there again. I was good at the other job, it would have been a fine position for me, satisfactory for years.

I have been looking on monster.com because if worse comes to worse I hope to find a job at a different bank, that is similar to the one I had, preferably with flexible hours. Or if I am in dire need, something that will do. Cause I don't need much money to be content, it is more important by body is content. To manage my pain means to manage my lifestyle and my career choices.
Cortex area of the brain thicker in people with migraine article

Yes, it seems my brain may be thick on the surface, perhaps why nothing sinks into it. It is a common fear of people with migraines, because of the craziness of the neurological symptoms, to wonder if there is any damage going on from the constant assult of migraines. The seizure activity, the excitation of neurons, is not as intese as epilepsy, but at the same time you wonder how that affects your brain over time. And it seems it does and may show a connection bwetween migraines and comorbid pain conditions like FMS.

Anyway, all I can say, is when I got my cat scan my doc said my brain (cortex) looked smooth, as in younger than my age, which I found oddly flattering really.

A study published in the November 20, 2007, issue of Neurology®, the medical journal of the American Academy of Neurology, indicates that people with Migraines have differences in part of the cortex, an area of the brain that helps process sensory information, including pain. The study found that part of the cortex area of the brain is thicker in people with Migraine than in people who do not have the neurological disease.
“Repeated Migraine attacks may lead to, or be the result of, these structural changes in the brain... Most of these people had been suffering from Migraines since childhood, so the long-term overstimulation of the sensory fields in the cortex could explain these changes. It’s also possible that people who develop Migraines are naturally more sensitive to stimulation... This may explain why people with Migraines often also have other pain disorders such as back pain, jaw pain, and other sensory problems such as allodynia, where the skin becomes so sensitive that even a gentle breeze can be painful.”
study author Nouchine Hadjikhani, MD
Martinos Center for Biomedical Imaging
at Massachusetts General Hospital in Boston

The emotional migraine crap

The prodrome (pre-migraine) phase is not all that bad usually. A little yawning, craving of chocolate and carboydrates and some neck pain. It is prior to the aura, which is obviously more annoying and spectacular in its variety. But sometimes the prodrome is a bitch. In particular the mood swings. It is either all the way one way or the other. The euphoria side (jittery, trembling, nervous energy, extreme insomnia, but elevated mood in a almost manic sort of way) is not all that bad... not really going to complain about a neurological high, when it helps get you through the day. The other side of the spectrum is far from pleasant. A all consuming, prodoundly deep and spontaneous depression. Hits you so hard you can't see it coming, while you are aware that it is highly deeper than would ever naturally occur, at least not without a darn good reason. You have to sjake it off like a blanket. And the fatigue that comes with it can drag you like lead. Anyway, I would not recommend it. Totally a drag. And not all that predictable.

Anyway, I would say the best treatment for these abrupt episodes of depression would be anything that can ride you through it. I prefer to minimalize all human contact, read sappy romance novels, listen to depression music and sleeping... sometimes all in one day.

The last couple of days have not been that bad pain wise. The aura has been mostly visual, like looking at a bad photograph with blotches of bright blue coming and going as long with some impressively bright visual snow. My doc decided to put me on the arthotec twice a day. I suppose it is an attempt at pain management and so far it is not that bad. However, although she seems to understand painkillers can cause rebounds, she does not believe this will, which of course is not true. However, I am determined to actually be able to work, so I am going with her idea to see what happens.

Living between that rock and that hard place

Somehow, I have ended up exactly where I was and that is not the best place to be. I can rant and rave about not having effective migraine treatment, but when it is all said and done the doctors do what they please and every once and a while I am good for about six months before it all goes down the crapper again.

Essentially, my position is missing work, getting fired and being very poor

OR

a crap load of pain tolerance, weak meds, working and training for a more stressful position.

Obviously, neither of these options is good. What I would like is to maintain the job I had before my medical leave, possibly with a decrease in hours (a shorter work day, even if it means a shorter lunch), no training for a new position at this point in time and medication that is half-assed benificial to help me get to work. Unfortunately, that is not one of the options available. So, basically I have to keep going to work, no matter the pain, taking too many OTC meds and risking serious rebound to do so and pray my doctor comes up with something extremely brilliant before this gets the best of me. And there really is no need to say that chronic migraines, without abortives, really drags you down quickly, no matter what you do. My temperment and moods have been all over the place these last few weeks because it is extremely difficult to get to work on time and stay through the day. Natually, when I get home any energy I had to maintain a facade is gone and I have nothing left in me, so I have been taking long naps after work just to have some relief really and because I can't do anything else... but hey, at least my boss is happy and I suppose that counts for something.

And one thing I can say is that these daily vitamins and herbal treatments I have been taking make absolutely no difference... but in theory I am 'healthier' for it.

I'm broken

I had an imensely bad day at work today, from the very start to the very end. For some reason I also found it very emotionally upsetting, when usually I just let this sort of thing roll off me. I think possibly it was not just the pain of the migraine, but the prospect it is going to continue like this with no relief for the indefinate future that got to me. Got to me good as well. I am not the sort for public displays of emotion, as I find that entirely embarassing, but I was brimming with tears for a good few hours, trying to distract myself from that thundering realization and the pain.

The day started with my being late for work. After hitting the snooze button a few times for some reason I turned it off, but realizing this I turned it back on... but of course it would not ring again after that, yet I thought it would. So you see, that is a bad start. The migraine was there from the moment I woke up, but I thought it was a tolerable amount of pain to endure until after work, and I was wrong. Shortly after getting to work I was called into the managers office where I was informed I had to attend every day of work, have the ER phone if I was incapable of showing, as missing work as I have been (and the numbers don't lie there) is reasons for dismissal. So I can't go on leave and I can't miss work. It is a perfectly reasonable judgement on my bosses part, but it is also reasonable that it would affect me emotionally. Maybe that is what amped up the pain. So I had to take one of those anti-inflammartores and choke back my emotions. But the pill did not work and it was just a steady increase in pain. I could not even manage a facade of well being, which at least prevents people from looking at me funny. So I let the river flow at lunch time, for some cathartic release and pushed through to the end of the day. And the moment I stepped outside into the strong wind, I nearly fainted from the flare of pain. And perhaps I was close to fainting, as my heart was doing quite a few ka-thunking today. I tried to mellow out this evening, in the dark, but it has been hard. And the anti-inflammatory while not helping with the pain, hit my hard in the stomach and so the last few hours have been filled with additional abdomenal pain.

So you can see how this was one rotten day. And also how tommorow might be exactly the same, excluding the late part and the office talk. I don't know how I am going to do it. But I have done it before... while I was learning the difference between acute migraine and tolerable mild to moderate migraines where I can suffer through work. The problem is, the lack of any way to control them, any pain relief and any way to abort an acute one. The additional problem is that this is upsetting me... not just as a fact that I must deal with, but on a profoundly emotional level. Two emotional outbursts of pure undilluted sadness have hit me hard this weak. Pain with no relief is disturbing, pain with no relief while trying to function is very difficult. So this day broke me, I fell hard and I am not sure I am going to bounce back as easily as I usually do with a flippant joke of a bit of well times sarcasm.

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...