You know the type of day where you either want to pull out your hair by the roots or sit down and cry or maybe laugh hysterically?  There’s no real way to handle a day like I had today.  So, you plug along doing what you can and hoping that when it arrives, tomorrow will be a better day.

Then tonight as the sun was setting, I looked out and the garden area was filled with fireflies.   Sparking on and off.  Rising up like embers from a fire.  Blinking here and there among the trees and the garden plants or in the air.

It was a magical end to a very frustrating day.  Sometimes the  world does give you a sign that life is very much filled with beauty.  You just have to open your eyes and look.  Well, I looked.  My heart is full.  Tomorrow will be a wonderful day.

What does it take to turn your bad days into confidence that tomorrow will be better?  For me — today — it was fireflies at twilight.

Tags: ,

0 comments   Comments

 

Mind Storm PosterSaturday was the worst flare up of Fibromyalgia pain I’ve had in over a year. After I woke myself up whimpering, the day seems to slide down a very steep hill.

At first it was my lower back and I took aspirin. Several hours later I’d upgraded to a big pain killer — no difference in pain level. I’m talking 8 to 9 on the 1-10 pain scale. A second big pain pill and a muscle relaxer and I managed to get it down to about a 5. Other than infrequent weeping from the pain — I thought I handled it pretty well.

I didn’t snap at anyone. I didn’t go and sit in the dark closet and hope the world would go away. I even managed to talk to company as if my brain actually functioned. Of course since the company was a friend who was well aware of my Fibro short-coming, I was given a bit of leeway when my attention span seemed a bit shorter than a 2-year-old after four bowls of sugar-laden cereal in a room full of shiny things.

Today, I’m happy to say, I’m back to my usual 3 and finding myself unusually grateful for it. I hope that I don’t have another flare up of this magnitude ever. Yet, I know that I probably will and there’s very little I can do to prepare or avoid it. Thinking over the past several weeks, I can’t see anything that I’ve done that would have triggered it. I’ve been very careful to avoid strenuous activities except in very small doses and with proper warm ups — that includes carrying wash up and down stairs, housework, washing floors, changing beds, cooking, etc.. I keep things to short 15-30 minute intervals with a rest period in between where I relax and rest (read, knit, work on the computer…).

I survived a very bad Saturday that stretched into a bad night. Today, Sunday, the world looks a lot better to me. Maybe I appreciate it more in contrast because today is grey and gloomy but none the less, today was and is a beautiful day.

If Fibro has taught me anything it’s that no matter how bad it gets, if you just hold on long enough, you’ll come out on the other side. You won’t be cured. You won’t be pain free. But, you’ll be alive and the world will look a lot brighter because it won’t be as bad it was. I now have a new benchmark for “bad” and I don’t think I’ll forget about it any time soon. So, every day that’s better than Saturday will be a good day.

Tags: ,

0 comments   Comments

 

The Silver SpoonToday has been a real challenge. Most of last week I kept having lower back pain on top of the usual fibromyalgia issues. It was constant pain with, now and then, a bad twinge. Finally, today I just couldn’t take it anymore and took a muscle relaxer.

I figured I’d been thinking it was kidneys and drinking water like crazy but it still hurt and every bend and lift was…let’s just say not fun. So, the muscle relaxer. It helped. So, I’m guessing it was the muscles in my lower back all the time and while I was trying to take it easy lifting anything I was probably just making it worse ignoring it. I’m a bit floaty but the pain is now in that “over there” place. You know — you’re in pain and you know it but it’s like one step to the side of you so while it’s here, it’s over there and ignorable.

Meanwhile, we’ve got all the ornaments off the tree and packed. We’ve managed to get all the branches smooched together. Next we need to take it apart and wrap it up for storage. That’s the sticky point with my back as it is. Guess that waits a bit until either I feel better or Hyperion tackles it on his own.

I really hate it when the spoon just get all used up while I still have a full TO DO list and lots of day left over. Meanwhile, I’m doing mindless knitting on my sock — the stocking knit bit in the foot so I’ve got 3 more inches before I have to think about the heel.

I really need many more spoons in my life. So much time so little energy and so few hours not in pain. Okay, I’m whinging again but darn it sometimes you just have to get it out so you can move on.

Hyperion Avatar Okay, this has nothing to do with muscle pain, but a lot to do with mental anguish. Gayle and I watched two sci-fi movies today. Supernova and The Black Hole. Neither are the “classic” by that name, but newer and if anything, worse. Worse because you’d think after all this time movies could actually afford to have a science adviser that could tell them they’re making complete idiots of themselves. Actually, maybe they do have advisers. Just because you have one doesn’t mean you have to listen to them. And in these cases, they most certainly didn’t. Let’s take a second to hit the highlights on the lack of any conformity to high school level physics knowledge.

First in Supernova we have our sun about to go supernova. Okay, we can stop right there. Our sun would need to be about half again its current mass at the very least, so the very premise is already impossible. But wait, there’s more. Why is it going supernova? Because a planetoid crashed into it. Never mind the fact that you could dump the rest of the solar system (which, including ALL the planets, is less than 0.2% of the mass of the sun) into it without causing much more than a ripple. But no, this single planetoid has “punched a hole” in the sun and caused it to become unstable. The instability causes Coronal Mass Ejections which, for some unexplained reason, seem to be aimed at the Earth time and time again. But wait, there’s more. Despite the fact that CME’s are huge energetic clouds of gas larger than the Earth itself, in the movie, they arrive as swarms of little fireballs that rain down and blow up individual buildings. UGH! And the solution to the problem of the impending supernova requires a suspension of disbelieve far above the capacity of this viewer. In most ways, the biggest problems with this movie revolve around the fact that the writers were incapable of understanding anything about the scope of what they were trying to meddle with.  The sun is just too big to fiddle with, and CMEs are just to big and diffuse to cause any problems on less than a hemispheric scale.

Next up is The Black Hole, in which an “accident” with a particle collider causes a black hole to form in St. Louis. Obviously based of the nonsensical ravings against the Large Hadron Collider, this movie quickly goes from the absurd to the disparagingly laughable. Quick lecture in two points. First: The energies produced by the Large Hadron Collider are of a lesser order of magnitude  then the energetic collisions taking place every second in our upper atmosphere between air molecules and cosmic rays. If those collisions haven’t created a black hole in the last few billion years, the LHC isn’t going to be any worry. Second: Assuming a black hole was formed, it would be a microscopic black hole which would flash out of existence in a few microseconds due to Hawking Radiation. Despite what you may have learned about black holes, they do actually emit energy due to quantum mechanical effects at the event horizon. And the smallerl the hole, the faster they evaporate.

So in the movie, we have an impossible event, creating something that wouldn’t actually be of any danger at all.  Furthermore, any black hole that did form, would be subject to gravity like anything else. And since gravity is a universally attractive force, the black hole would fall into the earth (the larger gravity field) and make its way to the core in no time at all before being snuffed by the aforesaid laws of physics. But that would make a short and pointless movie. So instead we get a full scale black hole, hovering over the ground, and eating St. Louis. Interestingly enough, the black hole appears to think (like Khan in Star Trek 2) in two dimensions. Instead of gobbling everything up all around it, it swirls like water going to down the kitchen sink, slowly expanding outwards, but letting helicopters fly over it with impunity. Now we get the part that REALLY doesn’t make any sense. If we ignore physics (and boy do we ever), there’s not much one can do to stop a black hole that’s on the rampage. So we get the addition of an alien entity that uses the black hole as a transit system from planet to planet, and feeds it by sucking in electricity. And “all” we have to do to save the Earth is kick the alien back through the black hole and all will be well again. Gayle and I yelled the solution at the TV about 15 minutes in when the alien first started moving around. Pity it took until 15 minutes from the end for the protagonist to think of it as well.

Okay, that’s enough ranting for now. But be warned, there are two more movies in the collection, and as soon as my craw can take it, we’ll dive into those stinkers as well. When? You’ll be the second to know.

Tags: , ,

0 comments   Comments

 

Woke up to find the house surrounded in fog.  At first I didn’t notice because the rain was pattering on the sky light and it was rather dark.  Once I got up and looked out there was fog, the thin grey blanket type over, around, and cloaking everything.  It made for the kind of grey, lazy day where you just spend your time catching up on all the little chores you’ve been meaning to do.

Picked up the kitchen and cleaned the counters and stove top.  Then started on the big job.  Taking down the Christmas tree.  Wish we could leave it alone since my back has been quirky for days now.  But, it’s not the decorating statement I want to make.  The hold up was having to replace the ornament boxes which we’ve had for years and were more tape than box now.  So, lots of shopping and checking in stores as we did errands over the last couple of weeks and found a couple of reasonable substitutes.  It seems that ornament boxes have become tiny little things that won’t hold ornaments — go figure.  So, today we took all the ornaments off the tree and got them packed up.  We started going branch by branch to pull the branches towards the center: you know when you separate and fluff them when you put the tree up that you just have to squeeze them all down again.  Got about 1/6th of it done.   Hopefully, tomorrow we’ll finish that bit of it and get the tree apart, wrapped, and stored.  Then it’s clean the living room and rearrange the furniture and the plants.

Meanwhile, I’m almost done with a sock … maybe another 1/2 inch and bind off. Then start the second one.  I joined the Rocking Sock Club and I’m really looking forward to the first package.  I’ve never joined a sock club before but heard a lot about this one.  I  just never remembered about it during the signup period.

I’ve found the black yarn for the bear’s face so hope to get that done tomorrow or at the very least over the next week. I’ve been finishing things lately and that’s a good thing.  Got the cowl done.  Just need to sew in the ends and block.  Should have pictures up for that soon.

Meanwhile, I’ve been reading in all the in between times to get my commitments for reviews done this month.  Trying to catch up and arrange some interviews before it gets too late, too.

Gumshoe Review published it’s first original short story this month.  We’ve already chosen the story for February.  We hope to have a new story featured each month.  This is a new venture for us and we’re still working out how to streamline the system: reading the submissions, ranking them, going over our favorites, notifying the authors whether we’re interested or not.  We’re getting better but still need to get a system that’s easy for us to deal with and make swift decisions for the sake of the authors.

Nevertheless, I still feel even though I got a lot done today that I’m still running in place rather than moving forward.

Tags: , ,

0 comments   Comments

 

Pain of the BluesToday when I opened my online news source, I was greeted with an article about the FDA wanting to pull many of the prescribed painkillers containing acetaminophen off the market. Philly.com has this article Painkillers at a crossroads as FDA decision looms. The Globe and Mail had this article, U.S. FDA recommends pulling some painkillers off the market. There was an article with an opposing view that was rather mild in my opinion.

In the Globe and Mail article, it said:

Despite years of educational campaigns and other federal actions, acetaminophen remains the leading cause of liver failure in the U.S., according to the FDA.

Panelists cited FDA data indicating 60 per cent of acetaminophen-related deaths are related to prescription products. Acetaminophen is also found in popular over-the-counter medications like Tylenol and Excedrin.

Those of you who read my blog know that I suffer from chronic pain. I found this bit about “years of educational campaigns and other federal actions” to be laughable. At one point, before my arthritis was diagnosed, the family practice doc I was seeing didn’t want to do anything about it because I was simply fat and needed to lose weight. The pain had gotten so bad that I was scaring myself with the number of Tylenol that I was taking just to manage to walk with a cane. I made an appointment and told her how much Tylenol I was taking and that I was concerned with liver damage. She laughed told me I could double or triple the dose and to just lose weight.

At the time, I was well below liver damage’s (LD 50) but that level has been lowered twice since and now I’d be just a bit below. I was so angry. I left the doctor’s office and went to see my chiropractor without an appointment. They took a look at my swollen knee and referred me to a specialist (at the time I couldn’t see another doctor without a referral). After seeing the specialist, I was diagnosed as having arthritis in both knees and later the added bonus of it was aggravating my fibromyalgia — a double whammy.

The point is that I knew more about the drugs I was taking than the malpractice-suit-waiting-to-happen doctor that I’d been seeing. Needless to say, I also changed doctors that day.

The second point is that most doctors, though they write the scripts, are not experts in drugs, drug interactions, and doses — most of the time they rely on the pharmacist to flag if something they prescribe is going to conflict with something you already have, or needs special information or training for the patient. Remember, there is a reason that so many pharmacies ask that you keep ALL you Rxs with them. It’s also the same reason they staple those informational notes to the Rx’s bag and ask if you have any questions.

If you take prescriptions be sure you understand how to take them and how often and whether you need to keep taking them if you feel better or should quit. Always ask questions if you don’t understand or feel confused. It’s your body and your life — you are the best person to take responsibility for keeping yourself healthy and safe.

Doctors have years of schooling, internship, and practice under their belts but, at heart, they are people. They know more about their fields that we ever will, but when you have a chronic condition, it’s worth your while to learn about it and ask questions, because no doctor can be an expert in every condition and disease that will walk through their office door. Mistakes and accidents happen.

My story about the doctor that suggested I take a near lethal dose of a Tylenol is a case in point. If I hadn’t read about the dangers of Tylenol/acetaminophen and liver damage, I just might have followed her suggestions. Luckily, I didn’t.

Do I think these painkillers with acetaminophen should be pulled from the market? NO. A resounding NO! Here in America many people live with pain — chronic, near crippling pain. Most people who deal with pain are under medicated and ignored. They need help. If these drugs are pulled, there are other that can be used, but we don’t have access to them in the US. Unless the FDA is going to allow alternatives they should consider leaving these on the market with strongly worded cautions and plainly worded Dosage Limits.

Even more important — the FDA should make sure that pharmacists, doctors, and the public have access to this education and training that they THINK they have done over the years. I’ve heard more stories similar to my “ignorant” doctor (used with the meaning that it can be cured) than I have of the other kind. I think information on drugs should be easier to find online, with easy to understand material explaining doses, uses, and contra-indications. Most dosage info online is convoluted or needs a chemical degree to figure out what’s too much and what’s safe — we need better resources for patients and doctors.

Mostly, we need better pain management. I have my good days and my bad.  And I do it mostly without painkillers.  But today, I slipped and fell, landing full force on my knee — it sure would be nice to take something, but I can’t, because I might need it more later on and I can’t waste the few painkillers I have. (I’m not the only chronic pain sufferer who has to balance need this way, and the sad part is none of us should have to.)

Tags: , , ,

3 comments   Comments

 

Fibromyalgia, etc.  -- purple ribbonToday’s post is a bit of whining and complaining about pain — feel free to skip.

Not really pins, but needles. Today, I saw my acupuncturist–she’s great. I always feel so much better after a treatment. This past month has been pretty much a haze of pain.

Changing weather causing migraines. A major fibromyalgia flareup. Last week I felt that I was nothing but a walking, talking ache. I felt like I should have those cartoon pain arrows all around me so people would know to stay away — potential woman on the edge!

Now I’m feeling like the pain is over there somewhere. I don’t know how far over or which there it is — but it’s not immediately here. That’s the best part of being post treatment. The worst part is knowing the next one isn’t until next month.

On pins is trying to figure out what my schedule will be for the rest of the month. I’m working to organize my work space. I’ve cleared up all the old advanced reader copies and moved them to a spot in basement. That freed up some space now on to the next phase of the organizational frenzy.

I’m instituted doing yoga and some aerobics every day. It’s Wii Fit but it’s still exercise. I started this several months ago and I’m realizing that I do see a difference in myself. It’s really helped my lower back pain. I was doing the back exercises off and on but now with the yoga, I’m finding that I’m not as stiff. The docs all say that exercise is good for fibro. It sounds totally counter-intuitive. Be in pain from every muscle in your body aching and then exercise. Yeah, that’s what I want to do. But gentle stretching and some yoga and aerobics does seem to help. I’m not into the strength training very much, at least not all the reps because that strains muscles more than I want.

We worked in the yard last weekend. We’ve got one of those huge electrical connector boxes out just across from the end of our driveway on our property. It was clear all around it for about 3 feet when we moved in. We’ve ignored it and notice that it was getting buried in the underbrush and vines (think Kudzu, and you’ve identified the vines). So we went out and cleared the area all around it again. We’re heading into hurricane and tornado season so we thought the access should be open just in case.

The problem is Hyperion now has poison ivy up and down both arms. I’ve only got a couple of small spots because my gardening gloves go all the way up to just above my elbow. So, next week I have an appointment to see the doc. By then I’ll either have the poison ivy under control — yeah, right — or be in dire need of prednisone. So, I’m covering my bases. Just when I thought it was safe to weed again. The only marginally shiny vine that wasn’t Kudzo was five leaved. So much for the beware of leaves of three rhyme. At least this year I made it to the middle of June before getting my first batch of poison ivy.

Anyone have any hints on taking care of poison ivy other than 1) a doc and prednisone, 2) Burt’s Bees Poison Ivy soap, 3) Domboro soaks, 4) washing everything you touch/wear/think about wearing so it doesn’t spread ? I’m open to hearing about them.

Tags: , , ,

2 comments   Comments

 

Pain of the BluesMaybe it could be a song, I haven’t slept much in during the last two nights. I spend time in bed, but just don’t manage to drop down deep enough in sleep to dream. I toss and turn and turn and toss and finally get up and read or watch something. Sometimes I really wish I had something that showed — some problem so that people could look at me and think: she’s in pain, let’s go easy on her. But I don’t.  I look healthy. Even when on that blasted scale of pain from 1 to 10 when the pain is a 7 or 8, I look perfectly normal. I’ve learned to hide mostly.

My poor husband puts up with the whimpers and the tears. He tries to comfort, but it’s now day three of pain level 6 or 7, and I’m beginning to wonder if the the pain itself is driving the new pain. I don’t have any pain meds left that work on this. I’ve got Imitrex nasal spray and last night, since I had a whopping migraine on top of the muscle aches, I used it. So after the Imitrex and 7 extra-strength Tylenol, I managed to get 2 1/2 hours of sleep.

I’m whining. I know I am. But I’m sick of the American medical system that ignores people in chronic pain. If I hear “Go to your happy place” or “you don’t need pain medication, you just need to change your attitude”, I’ll scream. I’d like to say: let me take this hammer and smash it into your hand with all my might, then you can go to your happy place and adjust your attitude, but for heaven’s sake don’t take any pain meds because that’s a crutch and it might be addicting.

I’m going to have to ask for pain meds again on my next doctor’s visit. My last Rx ran out over a year ago and I’ve been very sparing on the last 30 pills. I’m not in the market to get addicted. I just want a good night’s sleep once in a while. When the pain level is around 4, I usually can handle it, but these last few days are making me feel like something the cat dragged in after a particularly energetic bout of “play”.

So, I hate to be such a wimp but gee, I got to vent sometime to someone. Doesn’t make me feel any better physically, but I do feel better emotionally. So, just how do you handle pain without pain killers? Grit your teeth. Find a happy place. Beg for medication. Sit in the dark and cry? Just wondering how other fibromyalgia, migraineurs, or just people living with chronic pain cope.

Tags: , , , ,

0 comments   Comments