A Shot In the Dark?

Soon!

It's almost autumn, which is, theoretically speaking, my favorite time of year.  I love the fact that soon we can once again go back to wearing sweaters - better yet, blazers and boots. (OK, so technically, not so much for me, but what's a technicality among friends, eh?)

Suddenly, I no longer spend too much time wishing my skin were removable like the lining of an all-seasons raincoat, although perhaps I should reword that statement as I would love nothing better than to be given a new healthy body - and a brain too, if that's not asking for too much.  If you have CFIDS/ME and/or fibromyalgia and even migraines, you most probably know what I mean.  (If) you're able to get out, it means that the days have changed!   Fall means not only beautiful foliage and crisp clean air, but that it's also possible to breathe again without feeling as if you'd walked into the kitchen of a diner before air conditioners became affordable, much less invented.

But to me, fall also means a dangerous time of year.  The temperatures are so drastic that one day it goes from 90 degrees to the next day temperatures in the 60's or below to the 40's and '30's, depending on where you live, or what the climate decides to do that year.  You finally get to the cooler temperatures and then "Indian Summers" begin and they don't last a week or so, but all too often seesaw back and forth, worse than any hyperactive child on a school playground.

Suddenly viruses and germs start popping up from all over.  Children going back to school means that those germs and viruses find a perfect breeding ground for those "goodies" to start spreading their wings - if those little nasties had wings, that is!

The part which *I* happen to "love" best is that anyone who comes into MY house and comes anywhere near me becomes a "Typhoid Mary."  That is, most often they bring home the viruses and germs and yet don't normally get sick themselves.

It's all to do with a huge subgroup - for argument's sake, I will call it "a subgroup," because, really, no one knows what the heck really is going on with this "umbrella" of illnesses we at the moment call "Chronic Fatigue and Immune Dysfunction" or "Myalgic Encephalomyelitis." (I love the later term, "ME," but not spelling out those words!)  It all has to do with our wacko immune systems, which don't even need to belong to those with CFIDS/ME or fibromyalgia but just about anyone with a screwy immune system or enough stress.  In my "subgroup" at least, I have a under-active immune system and an over-active immune system, both at the same time, affecting different systems.  For example, it's under-active while fighting infections but over-active in responding to the initial viral infection. 

This year we started this "Autumn Syndrome" early and this year we all came down with some sort of bug that's now going around town, starting with Labor Day weekend.  My feeling is "really???  Already?"  Yes, we all pretty much had a cruddy Labor Day weekend with a following week to match it, despite my optimism.  (When will I ever learn?)  I felt badly for my family but I was also feeling pretty sorry for myself too, I admit it.  I'm not a robot: I do have days when I get really cranky and it's just that much harder to laugh.  I also have to admit that all too often the only time I'm sure if there's something "normal" wrong with me and not something that's due to my core illness of CFIDS/ME/fibro is by seeing if my family is affected or the town is affected.  Other times I feel as I'm the canary in the coalmine which warns of what will be seen in the upcoming fall/winter season.

No, I do not get the flu shot each year, although I have a couple of times in the past.   Just as with every aspect of CFIDS/ME, even the advice on flu shots has gone back and forth as to "yes, DO get the flu vaccine, ARE YOU INSANE?" or "NO, do NOT get the flu shot! ARE YOU INSANE?"   I gave it up after my second flu shot which gave me the flu yet again, and pretty bad bouts of it at that.  After I got over the flu - in both cases - I was much worse than before I'd had the vaccines.  I'm glad that finally, most places no longer twist your arm about getting one because that's what mine had been: twisting of the arm, despite hubby, a relatively healthy person (knock on wood!) refusing the flu shot each and every year.

And though I DO have a problem with some vaccines (do we really need as many vaccines as are being hauled out these days?), I do believe one vaccine which has served me well is the "pneumonia vaccine."  I'd come down with severe bronchitis one year which turned into pneumonia, went straight into pneumonia the second time around, coming close to death because we had a hard time finding an antibiotic that worked on me and the third time it was an incredibly close call.  Period.  That's when we all decided that a vaccine would be worthwhile (understatement?).  In this case, however, we knew what we were vaccinating for, and knew that I would definitely not survive a fourth bout of pneumonia.

All of which is to say that please watch yourselves this season, especially if you're relatively new to this horrific ordeal. I'm not sure that all the doctors out there agree in regards to the flu vaccinations - a nice way of saying too many don't want to admit that they've gone back and forth on every theory they've sprung on us better than any Olympian winning gymnastics team.   

In the meanwhile, hoping that all are feeling the best they can be, only better.  Ciao and paka.

The Uglies We Don't Want To Talk About

Because of a fancy Flower Show, each night there were extremely impressive fireworks.

Since this IS a CFIDS/ME/fibro/insomnia/pain blog, I should occasionally, at least, talk about some of the "nasties" out there.  Oh, and give my take on them as well.  After all, otherwise, why are we here, other than to hear about my wild adventures and experiences?  Yes, yes, I hear people all over saying, "no, no!  Be your charming self...we don't need the nasties!"   But proceed I will.  I do so hope y'all can forgive!  (This, I'm afraid, is my feeble attempt at humor!)

So on with it!

This year I've been getting a lot of aphthous ulcers in my mouth, otherwise known as "canker sores." I've not really had them a lot before, intermittently off and on over the last few years, though relatively rarely, usually after something silly like accidentally biting my tongue. But this year, they're so bad that my entire tongue has been affected by them, along the ridges of the tongue, the back, the sides, the front and throughout, repeatedly. They can and do affect the back of my throat, the roof of my mouth, inside the cheeks, and along my gum line too, but not as often as with my tongue. They are painful little monsters, and it's gotten to be so bad that when they're in full-blown force, I have trouble swallowing anything whatsoever, including saliva and water.

I've talked to my doctors about them, of course, and have gotten sympathetic nods of understanding and I've been told that it's not surprising that I've developed this problem, especially after the huge amount of stress our family's been under for the last two years. My body is starting to rebel, now that it sees that the fight-or-flight mode it's been in is starting to abate (KNOCK ON WOOD!). But understanding this isn't helping much, so I'm trying to be a bit more targeted in my approach to keeping them at bay, as I'm convinced that there is more here at play than "simple stress."

I read in a few places that there are a few things that can contribute to the frequency of this condition and in doing a bit of my own research on them, here are some of the more interesting factoids/thoughts I've found and formed:

• Stress seems to be the unifying bad man - yes, stress, the mother of all evil, it seems, and to me, an all too often convenient excuse of science when something is not understood. Furthermore, stress is especially the cause of the proliferation of them. Mine can start with one or two and disappear, or the opposite, can, and usually, happens: they start multiplying and taking over like some weird version of a campy Japanese terror movie. I feel as if tiny little aliens are invading my mouth. Come to think about it, I suppose they are!
• Lack of sleep (the bane of my existence) can cause an outbreak.
• As disgusting as they sound, they are not contagious. (Whew!)
• They are often accompanied by swollen lymph nodes and even fevers...as is the case with me.
• And here I go with my political incorrectness - it's been a while! They seem to occur more often in non-smokers(!) Funny, I never had them before I stopped smoking, almost two years ago.
• Sharp food, such as toast or potato chips can trigger them, as in physical trauma. Actually, I've noticed cheese doodles are a culprit too. (Call me wild and crazy but every once in a while I'll get a cheese doodle craving...that'll have to stop!)
• Citrus fruit is a contributing factor. I forgot this one because it's so counter intuitive and got a terrible case, not surprisingly, on the plane flying to KL: stress, lack of sleep and orange juice was a winning (or is that losing?) trifecta. I also find this to be ironic because I so often drink OJ to boost my immune system. By the time I was on my way to Tokyo, my mouth was in such bad shape that it took everything I had in me to keep the tears at bay.
• Vitamin C has also been accused of being a culprit. I'm not happy with this little tidbit since one of my favorite facial treatments to reduce hyper-pigmentation (age spots!) and cause new cell turn-over, is full of Vitamin C. I've told myself that I'll watch it and not use this product if I have a break-out (THAT should be fun to see, given my memory, or lack thereof!) and I'll let you know how that comes along if there is anything pro or con here. I do know that what you put on your face does end up in your system, as I've tasted lavender oil, the papaya in a face mask or even the clay in a clay facial mask treatment.
• Because certain types of toothpastes (those with SLS) are suspected in contributing to these ulcers, I've tried changing my toothpastes a few times; I've also tried changing toothbrushes often, even though they aren't supposed to be contagious, as well as tried different types of mouthwashes, with alcohol - to kill whatever - and without alcohol - to just clean the area. Nothing, alas, seems to make a difference.
• These canker sores all too often are in for a long engagement, of at least three to four weeks, or longer. Worse yet, too often they'll be almost gone, and then bam! Right back again! For example, if I've not had sleep for a night and day (which is a frequent occurrence), they viciously come back.
• They also rob you of any energy. I couldn't believe that I was too tired to break the lock on the hotel bar and so had nothing to drink for close to 15 hours because I was afraid to drink the Chicago water: I'm not a prima donna...just someone who tries to realize how precarious my health is and, am, at times(!) reduced to being a slave to it!
• The lack of certain vitamins/minerals/nutrients (Folic Acid, Iron, zinc and Vitamin B-12) are suspected to be a cause...I laughed when I saw that - lack of Vitamin B-12 was funny since I get daily injections of Vitamin B-12 and my iron levels are fine.
• Celiac disease has been associated with these ulcers and my tests came back that I did not have it, just as I suspected. Neither do I have Crohn's Disease, nor do I wear braces.
• Dairy products are implicated. (When are they not?)
• Immune disorders are also implicated. I think we all know that one, but where does that get us?

So, what do I think? Really, I believe that no one really knows and that a lot of "causes" are thrown out there. I also know that I get rather annoyed when I see "stress" thrown into the mix because it comes all too close to throwing CFIDS/ME/fibromyalgia, and even sleep and pain, perilously close to the psychiatric wastebasket, just as "we" are climbing out of it!


In the meanwhile, I'll continue to monitor this nasty turn of events.

Notice the purple triangle up top and then the red one on the bottom.   This was a bridge that changed colors every few seconds, going from white to red to turquoise, to purple.... extremely beautiful as well as mesmerizing!