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To Work or Not To Work with Fibromyalgia

Having a career with fibromyalgia, chronic fatigue, arthritis, and several other conditions is quite difficult, but so worth it to me. I manage a family owned restaurant. Not just any family owned restaurant, a very successful and quickly growing restaurant. It is busy, fast paced, and there is always something to attend to. My mother took a huge leap of faith and started the business over seven years ago, and since then we have quadrupled (at very least) in size. I have been working for my mother since the beginning of our journey, plus or minus a few months. That was when I was only 16 years old! I have to admit that I was not the best of employees for a few years. I would have fired me several times over.

Over the last several years I have taken on most of the responsibility of the everyday management. I am the personal/public relations department, the advertising department, the networking department, the full time baker, a server, and I get to be the one to deal with all of the extremely random situations that pop up. There are so many different things that pop up all of the time. It is amazing the random problems that come up in a restaurant from the little things like employees calling off or running out of milk all the way to the big things like disgruntled former employees trying to sue me. I deal with it all.

The stress is quite intense and does not do my body well at all, but I love what I do. My employees respect me, they treat me kindly and they work their tails off for me because I do the same for them.

Here is my problem: Holy Crap! I am so worn out. I am only 24 and I can hardly keep up anymore. That not only sounds awful, but the toll it takes on my pride is an even bigger, more monstrous problem. I am good at what I do, I only wish I had the energy it took to be even better. How much longer can I keep this up? Can I keep it up as long as it takes to someday own it myself? 15, maybe 20 years? That is a long time for someone with chronic pain to be under that amount of stress! Can I do it?

I honestly do not think I can. No matter how badly I want it, my body simply will not be able to do it.

This is the sad truth for people living in chronic pain. We want to be productive members of society. We have aspirations! We want success and the chance to make our lives more rich with pride of ourselves. But can we? Well, sure. But, just not the way we had planned to before our bodies were stolen from us.

So, if I do not think I can make it long enough to own the restaurant in which I grew up, then what on Earth am I going to do with myself?

Several years ago I already knew the fate of my body. I did not have a diagnosis, nor was I sure what the hell was going on with it, but I did know I was getting weaker and weaker each year. I knew that the pain would get worse, and that my body was not going to be able to participate like it used to. I thought I was going to loose the use of my limbs to be frankly honest. I made sure I got myself into online school right away and got my Bachelors degree in psychology just in case I needed to take a desk job somewhere.

Oh, desk jobs...... That kind of sounds like hell to me, but at the same time my body is begging me to take one. I knew I couldn't make it through anything boring or I would go insane, so I did a ton of research about various desk jobs that I might not suck at. I spent months deciding what I wouldn't absolutely hate doing. Finally, I fell upon a medical transcription course that I could do at my own pace, but wouldn't take more than 2 years. I forked out a fair amount of money, and a vast amount of time and dedication into this course. I bought books upon books, and spent hours studying and practicing. I was good at it and it was something I found a ton of interest in. What Spoonie wouldn't find interest in medical jargon and transcribing surgical procedures? It was honestly kind of fun, well, until it wasn't anymore.

I got so tired of being stuck in my house and in front of my computer, and I wanted to focus more of my energy on the restaurant. I was running out of energy to do both so I had to choose. I chose the restaurant, of course, I mean I grew up there and couldn't let my mom down.

Some days, I wish I would have finished that last course. One more class and I would have been done, but I chose my mind over my body. I went with what my heart wanted rather than what was best for my body. I regret it some times. Why didn't I listen to my body and what it was telling me? Oh yeah, I was in a remissive period and I felt fairly well! Only to regret it with the next flare.

Why is it not able to have two different jobs? One where your work during a flare, and one that you work when you are not? Too damn bad the world doesn't work that way. So what is going to work as a career for me and everybody else living with fibromyalgia?

The only job that really comes to mind that would work for someone with fibromyalgia is a job at one of the organizations that support fibromyalgia. That would be awesome! Who would understand your work limitations better than the leading researchers and voices of fibromyalgia? You would be working for a cause that you are motivated by both professionally and personally. What could be a better career prospect than that? And can we really expect to even hold a career with the symptoms and the pain that we endure? Lord, I hope so, but that is all I can do: HOPE.

Unfortunately, I do not live in an area where there is even a association or organization within a 500 mile radius, at least, so that kind of plows that prospect.  But, if you do suffer with fibromyalgia, this would be something worth looking into for sure. I am going to assume that they are nearly always looking for help either for profit or non. Volunteering your spare time if at all possible also helps the cause.

Someday, there will be more opportunities for us. Someday, there will be more research, more fund-raising, more understanding. Until then, we will fight every single day, we will stand tall, and we will make it by the best we can, the only way we know how.

Gentle hugs, or no hugs because that hurts less....

-Aimee

When Personalities Conflict With Illness

My personality and my illnesses do NOT work well together at all. I like to be busy, with some rest time of course. I like to be challenged at whatever I do. At work I continually take on more and more wherever I can, although my pay doesn't compensate me nearly enough to do so. I do it anyways because I get bored without a constant challenge. I always want to learn how to do more, more, more. I always try to find the fastest, most efficient ways to complete everything. I would say that has become a talent of mine after developing fibromyalgia. Making big tasks smaller and more manageable I suppose. We all have to learn it to make our lives a little bit easier. If we can make every single task a little easier, a little faster, and a little more efficient, then we are saving ourselves tons of time and energy in the long term, or at least I like to think so. That is what I keep telling myself.

In all reality though, living with a chronic illness that no one else sees can be devastatingly difficult. There are only so many ways to attempt to make our lives easier. I can only find the fastest, most efficient way to do the dishes, but I cannot make them do themselves. I can find the easiest ways to complete my job, but that job still needs to be completed. When you have fibromyalgia or any other chronic illness, everything seems more difficult than it used to. Walking up and down the stairs in my house is quite honestly so difficult for me that I dread having to go downstairs to do laundry or whatnot when I am not feeling up to it. It doesn't mean that I cannot physically go down the stairs because I sure as hell can, but the amount of energy that it uses simply isn't worth it to me. It is amazing how one flight of stairs can make me feel like I just ran the Boston Marathon. I get dizzy, nauseous, extremely fatigued, and my legs feel like Jello afterwards. It is literally exhausting to use the stairs for me, yet every time I visit the doctor or any other place that has an elevator, I still choose to use the stairs because I am just that stubborn.

I can't avoid the stairs for all eternity, although I wish I could. I take the stairs for the conditioning I suppose, or just to prove to myself that I can. Every time I regret it because I am worn the heck out afterwards. How embarrassing is that? Most people would think "Wow, you must be really unfit." There are some days after work that I pull into my garage and just sit in my car because I just cannot find the energy to get out of my car and go inside. Sometimes I just cannot find the energy to even speak to people. People might find me to be rude or anti-social, but in all reality, people just take a ton of energy. Even just having a conversation is so tiring that I feel like I might pass out from exhaustion. This really doesn't bode well for my social life. People think I am mad at them, or they get mad at me for not keeping in touch, but I simply do not have enough energy to maintain healthy friendships. I have lost a lot of friends over the years for not being able to keep up with them. Sure, I have canceled plans may of times, not because I wanted to but because I had to.

Good friends are hard to find, and good friends that understand your limitations are much more difficult to come by. I kind of wish I had a friend that also shared my condition so that we could cancel plans on each other whenever we wanted and not feel guilty about it or at least know they understand. Imagine a friend that would not hold you up to every plan that you made with them, and understood that when you are having a bad day that it had nothing to do with them, that it was just a bad day. They wouldn't require that you chatted with them the whole time, and you could just sit in silence with them and be alright. They would know that "maybe you should exercise more", or "just be positive and it will go away" are not the things we want to hear. Imagine that friend. I want that friend, and I need that friend. No body that does not live with fibromyalgia can possibly even begin to understand the depths that the pain reaches. It reaches all parts of you; your entire body, your heart, your mind, and your soul. They are all in pain. Every aspect of me is in pain. I need someone who understands that as well as I do.

In the meantime, I pour my thoughts onto this blog, allowing it to relieve a fraction of the pain. Not only do I write to help myself, but I do hope that someone, somewhere feels they can relate to my pain. I do hope to help people with fibromyalgia and chronic pain whether it be just rambling on about things they can relate to, or being that friend that everyone with chronic pain needs. I find the community that is involved in fibromyalgia, chronic pain, and chronic fatigue to be quite inspiring and I love reading other people's stories. If anything, I hope there is one person out there that my ramblings have helped.

Until next time,

-Aimee

Essential Oils and Natural Products

I decided to dab a little into essential oils after visiting the acupuncturist. I am a bit skeptical of the uses for them, but they are all natural and I am always willing to try things that might help, even just a little bit. The way I see it is that humans have been relying on such plants and oils for centuries and have been using them for their medicinal and psychotherapeutic properties for a very long time. After years and years of use, we began adding more and more chemicals to natural products hoping to make them better or more effective, but do we really need all of those extra chemicals? Maybe fibromyalgia and other conditions are made worse, or even caused by the thousands and thousands of synthetic chemicals found in everyday things. I do not know about you all, but I did a boat ton of cleaning as a child, and I used so many chemical filled cleaning products that it gives me anxiety just thinking about it. No gloves, no mask, no precautions what-so-ever, in a small bathroom or kitchen with no ventilation, scrubbing away with 409, bleach, and many, many other corrosive and chemically enhanced products. So, does this have anything to do with the many conditions I now live with? I really do not know and cannot say, but I do know that I wouldn't let my child breath half of the stuff I did as a child. Not saying my parents were wrong in any way, but now we just know better.

What does this have to do with essential oils? Well, they have so many uses that it is almost unbelievable. Lemon, orange, and acidic oils are well known to destroy bacteria, fungus, worms, etc. They are commonly used in many cleaning products, but some companies add dozens, if not hundreds, of synthetic chemicals to their products. Do they really need to? Probably not, but they are always looking for something bigger and better than the next guy. Melaluca is a company that I used to order all of my cleaning and personal products from because they were all natural, frequently using the melaluca essential oil in their products. They did not always smell as good as the brand name products, but they were just as effective. I really enjoyed their products, but they were a little on the expensive side especially if you were not a "preferred" customer. To become a preferred customer you had to order so many products every single month to keep your status. If you didn't you lost your "preferred" customer status and ended up paying much more for the same products. In the long run, we simply could not afford to order as many products as it was required, but it is a great brand if you are looking for natural products. Here is a link to their site: https://www.melaleuca.com/

For simple essential oils I found that Eden's Garden was a great place to shop. They sell the basic essential oils with a huge variety at a great price. They also sell carrier oils, aromatherapy, and diffusers, and other accessories. The website is clean and looks great, it is easy to navigate, and they have bunches of different gift sets that you can send to your loved ones. I ordered a set that I could customize myself including several basic essential oils like lavender, lemon grass, blood orange, cedar wood, and ylang ylang. They also carry synergy blends, which are combinations of pure essential oils that have specific effects. I ordered quite a few of these and I am eager to try out. One of which is called "Head Ease" that is made up of several different essential oils and is supposed to relieve pain and evoke relaxation. You can dab some on your temples or place a few drops on a warm towel and place over your forehead. Others can help you sleep or breath better. If you are interested in ordering essential oils I highly recommend Eden's Gardens found here: http://www.edensgarden.com/

What are your favorite essential oils and where do you get them from?

Do you have any blends that you recommend?

Have essential oils worked for you? What for?


I look forward to hearing about your experiences.

-Aimee

My Experiences with Acupunture for Chronic Pain

Having fibromyalgia, I will try almost anything to help relieve the pain. My most recent new trail has been with acupuncture. I found an amazing acupuncturist in my town, and she is most definitely worth the drive it takes to get to the complete opposite side of town, well, more or less in a completely different town from which I live. I had never tried acupuncture before and was not at all sure what to expect when I went in. I did a minimal amount of research after making my appointment, but did not really find anything besides hugely conflicting evidence which mostly pointed towards biased and unreliable data and studies. Mostly though, what I did read made me a bit skeptical going in, but I do try to keep an open mind towards anything and everything until I find out if it works for me or not. I will give you a basic rundown of what my experiences at the acupuncture clinic entailed.

Prior to my first visit I was given a decent amount of paperwork to fill out. This entailed the general stuff, of which you also probably know all about. You know, basic history and physical information, family history, allergies, etc. What set this paperwork aside was one sheet front to back with a survey of several questions broken into many different sections. Each question was numbered 1 to 5, 1 being worst, 5 being good. The questions went over almost every single thing I could think of. For once, I did not have to remember to bring a symptom up because it went over every single one of them, well almost all. It asked about bowel functions, urination, tinkling, bladder pain, constipation, diarrhea, fullness feelings, etc. It asked about headaches, migraines, mental fogging or slowing, neck pain, etc. One thing that I was almost relieved that it asked about was libido because this is always something I really do not want to have to bring up, nor do I even remember to bring it up. I did not have to here. It was asked about, as was just about everything else. It also asked about what goals I had in mind for my treatment. Of course, pain management was at the top of my list, as well as stress management and homeostasis.

When I arrived at my first appointment, I was pleasantly greeted as I removed my shoes. "Remove shoes at the door" it says. Relaxing really. Any place where shoes are not necessary is a good place. The acupuncturist, whom is a lovely, soft spoken, and gentle lady, welcomed me in and was eager to get me feeling better. She validated that the pain was real and that it was not all in my head first off. "Don't ever let anybody tell you what you are feeling is not real, it is there and it is very real". I suspect that she must suffer from chronic pain as well by this point. She was open and was very easy to talk to which is one of the most important things for me when it comes to picking any doctor. She listened to each of my complaints and asked about more. She was friendly, funny, and all around an amazing person. You know, one of those people that just feel like they are all around lovely.

We reviewed the paperwork I filled out and she explained that each section correlated with specific body systems. Just has I had learned throughout years of research, my adrenal glands were wore the heck out. My body does not seem to digest food well at all, and my kidneys and liver are functioning below par. Several others were brought up, but these were the most prominently obvious. Mind you; this particular acupuncturist is a board certified medical doctor whom practiced medicine for many years before deciding to start her own acupuncture clinic. I felt myself being able to trust her opinions on whatever she brought up.

After the initial consultation she had me undress in her absence, put on a medical gown, and lay face up on a heated table. It was pretty cozy. I was covered with a blanket so I was not exposed to the world. She proceeded to start the therapy, placing several needles throughout my body, several on my legs, arms, neck, ears, face, and hands. The needle sticks were not exactly painful, but not particularly comfortable either. Some of them I could not feel at all, while others did make me flinch a bit. The ones that were tender on insertion became unfeeling after a couple of minutes. Some points were immediately obvious that they were pressed into nerves. Again, not painful, but brought on a fullness feeling within that nerve running along the nerve pathway. Some muscles felt on the verge of a spasm after the needle insertion. Others felt just as they usually did. Some needles seemed to refer strange sensations to distant areas of my body.

She used some aromatherapies that seemed to have calming effects, and one of which in particular smelt so good that I kind of wanted to sneak the bottle of it home with me. So good in fact, that I went straight home and ordered some aromatherapies online for my own use. (I can't wait to get them.) I laid there for around 20 minutes with the music playing and mysterious aromas filling the room. I used this time for my meditation time and it worked out pretty well. Acupuncture is now officially also my meditation time since I cannot seem to find time for it anywhere else. After awhile, she came in and removed all of the needles with very minimal, almost no pain. She gave me some probiotics and some digestive enzymes to try out, and told me to come back in a week or two.

Right after the appointment I did not feel all that well from laying down midday (that is a weird thing with me, if I lay down for any point of time throughout the day, as soon as I get back up I feel AWEFUL with a major headache). So, it took me a little bit to get out of my haze of relaxation and meditation and for my body to come around, but after a few hours I felt much better. Maybe it was a placebo effect, maybe I just enjoyed the quiet time, but maybe it really was working. I tried not to get my hopes up too much. The needle insertion sights were tender into the night, and my nerves felt a little wound up, but overall I felt pretty good.  The next day I felt better than I had in quite some time, but attributed it to the nice weather. The day after that, it snowed and the weather was disgusting and fluctuating, but I still felt pretty good. I continued feeling better for several more days after that. After about a week the stress at work began to get to me and my health started to decline once again, but I will take 4 to 7 days of feeling pretty good anytime. Quite honestly, I would probably go again and again just to visit with my acupuncturist even if it did not work. That is how nice she is.

My second visit, I went in in a fairly crappy mood and in a good amount of pain. I was angry, irritated, and extremely stressed out after the week I had had. After the treatment I was in a daze again, and my body was stiff from laying on the table. I was in a considerate amount of pain after the treatment, and it took hours to wear off afterwards. The insertion sites were a little swollen and tender, but did not hurt too terribly bad. I started feeling better throughout the evening. The day after I felt pretty good but not excessively so. Certain muscles were so spastic that I could barely move them, but my headache was more tolerable which is what she focused on that appointment. I felt more calm and much less stressed out the next few days, so even just that made it worth it.

Overall, I need to do more research and have many more appointments before I can give an honest answer of whether acupuncture works for me or not, but so far I am having pretty decent results and will continue to go. Like I said before, it could be attributed to the placebo effect, or could simply be natural fluctuations that come along with fibromyalgia, but it could be working. I will let you know as I find out more about the mysteries of acupuncture. Until then,

May the Spoons be Ever in Your Favor,

Aimee

I Feel A Nervous Breakdown Coming On.... (w/ plenty of explicit language.....)

I am so tired and so fed up with people that I could scream. Really, I should find the thickest pillow I can find and just scream into it as loud as I possibly can. I just might have to do that. I will add a metal note to add that to the list of ten thousand other things I need to do. I might get around to doing it here in the next few days, or weeks.... Crap! I have no time for a mental breakdown right now but I feel one coming.

You know those, I know you do. Where everything in your daily life just keeps piling up so high that you don't even know where to begin. On top of that, you are in the midst of a flare, or you can feel one creeping up on you. That is when it gets you. That is when it strikes. When the pain becomes unbearable again and you look at your pile of crap to attend to, and all you can do is break down. Your whole world collapses around you for awhile and all you can do is plan an escape from it. I know you know how this goes..... You have been here before. Probably time and time again....

God knows I have been here so many times before. The sad part is (not to toot my own horn here) I am one of the strongest people that I know. I know a whole lot of strong people, but I am one of them. I have a great career, a great family, a great husband and child, with our own house and enough money to cover our bills. At 24, I would say I am doing pretty damn good for myself. I am one lucky person, but I have busted my tush to get where I am at. I am mentally strong. Hell, I have had to be my whole life. I feel like if the concept of reincarnation is truthful, then I have lived many times over already. I can claw my way out of depression and anxiety at its worst (well, most of the time). But, I will tell you that even I get to the point where I just need to break.

Maybe 10 ice cold Budweisers would do the trick?.. Then I have to remind myself that it is NOON. Although it is probably 5 O'clock somewhere, it sure as hell isn't here. So I hop in my car and I just drive....... anywhere really. Around the lake, through the back roads, or just anywhere I can roll down the windows and breathe the fresh air for a little bit. I get to be alone when I drive, and anyone who is a mother can understand how much of a rarity that is! I just want to be ALONE sometimes. Not because I don't like people or because I don't like spending time with my loved ones, but because when I am alone I have time to try to find myself again. I get lost in this hollow stranger of a body I have. The real me just gets trapped in there; screaming to be set free. Sometimes I just need to spend time alone to find her again. This usually includes driving or writing for me. These are some things I NEED in order to keep me...... well, me.

 

Problem is, it usually takes me quite a bit of solitude to find me and bring me back. That is not something I can get a lot of. I am a busy mom and have a busy career that I can't really get away from for long enough. I really want to disappear into the woods for the weekend but my job requires that I have constant cell service, and that is if I even get a "weekend". Weekend? What does that even mean? Dear Lord, I need a vacation. On the days that I actually do not have to attend to something at the restaurant, I get to spend it cleaning the house. Oh goodie! Sometimes my days off are more work than a day at work. I end up dripping sweat while scrubbing the crap that needs to be scrubbed, vacuuming, dusting, folding, washing, sweeping, mopping, etc., etc., etc.,...... etc., etc. And more etc. You get the stinking picture! And you know because you have probably been there! If I don't do it, then who the f**k will? My husband says (bless his well-meaning and naïve heart) "If you don't feel like doing it, then don't do it." Well, my love, then who is? Are you going to do it?


Now, don't get me wrong. My husband is supportive and helpful. He works hard at his job too, and he does his chores, and often offers help, but he isn't going to remember that the toilet needs to be scrubbed! Maybe once it has an inch thick film on it..... EWW! Is he going to remember that the sheets need to be changed and that it has been a year since the last time the oven has been scrubbed.... Um, no. He won't. Will he remember that the dogs and fish need to be fed, as well as the child? Does he even know how to cook anything besides Ramen noodles and elk steaks? I do not even know! Does he have any clue on what days the kiddo gets his baths? Probably not. I wonder if the hundreds of leftovers in the fridge would grow legs and wander to the garbage themselves? "Just don't to it.......?" That is an absolutely ludacris idea! It wouldn't get done. So, guess who is going to keep doing it.... I will give you two guesses, but you will only need one.

 

Women work their little tails off, boys! In case you have not noticed, which you probably haven't. On top of the old stereotype of the woman being the home caretaker, the child caretaker, and the husband caretaker, we are also expected to keep an income coming in as well. With all these things to do it is no wonder that our libidos are in the negative! We have no energy for that shit because we are too busy taking care of (almost) EVERYTHING! When we ask for help, it is like we are making you go out of your stinking way to help. But you want help getting rid of your erection? Ha! Well I want help folding the laundry and changing that shitty diaper for the tenth time today. Welcome to this century boys! Time to step it up because God knows that women have already stepped up 10-fold. This isn't the 50's. Time to realize that women will soon take over the world if you can't step it up because we will have to start taking care of that part too!

Maybe it's my meds (or lack there of) talking, but boy I am so cranky and tired that it is probably best for everybody's sake if I do spend some time alone. Either way, I'll get back to doing what I do. But maybe a vacay should be in the plans, soon. 


How many of you have gotten to the point where you knew that there was a breakdown, a major flare, or both coming? You are more than welcome to rant here. We all need it....

-Aimee

Neural Connections in Fibromyalgia and Chronic Pain

If you think about how our minds work it is simply amazing. All of the neural connections that make up our brains are of such a number that it is practically unfathomable. Trillions of connections! Every single day we create many more connections by learning new things and carrying out new tasks. Of course, as we create more connections we also tend to loose some that our brains deem unimportant. Generally, this is how our brains "forget things". Those childhood memories that we do not think about for years at a time are typically first to go. When you do not recall a particular memory or thought for quite some time, the neural connections begin to fade, and over time the connection is lost all together. If something were to remind us of a certain event of our childhood, the recall of that memory would strengthen that neural connection making that memory stay put for a longer time. If it were then not recalled for several more months or years it would begin to fade again.

This system allows our brains to sort the needed information from the unimportant. If something is of particular interest to a person, and they think about it more often, then those connections strengthen more so than others making it more memorable to you. If you think about work often, like making an employee schedule or placing a business order, then the connections that allow your brain to perform those functions will be stronger, therefore of more use to you. This is why practice really does make perfect. When you practice something, anything, the connections which are of use in that action are strengthened over and over again. Eventually that task becomes "second nature" to you because that connection is super strong. Interestingly enough, this is why the people who learn the fastest are not the people who stop and plan out how to complete a task, but are the ones who do not plan but just jump in and do it. They don't stop to think about it, they just hop in and do it.

The best why to learn, by not planning; just doing, is lucky for us considering we cannot really plan ahead for anything. We are "fly by the seat of your pants" kind of people. Hell, we do not know how we are going to be feeling hour-to-hour, or even minute-to-minute, so how can we plan anyways? Even when we do plan things out we tend to advert our plans based on how we are feeling. We can make plans, but who knows if we can actually carry them out or not until the time to do it gets here. It makes it hard, but it also makes us "doers" rather than "stop and think about it-ers". It is good to know that this makes us learn faster and more efficiently. Hey ya'll, we do have something going for us!

The way neural connections "remember" and "forget" things is rather fascinating. For people with chronic pain, this system of memory recalling and fading is of particular interest even beside the fact that it most likely makes us faster learners. Because our bodies feel pain on a nearly constant basis, the neural connections associated with feeling pain are almost always being strengthened. This is the downside folks. Our brains are constantly "remembering" that we are in a substantial amount of pain. Those connections are like the HULK (think bulging biceps) because they are unable to forget they are sensing pain. They are constantly being activated, pulsing with recurrent electrical stimulation they cannot seem to calm down. So, even when our bodies are not sending pain messages, the connections in our brains are so strengthened that they continually think that we are feeling pain when we shouldn't be. They have gone haywire.

So, are we in pain because our neural connections have gone haywire, or has the pain made them go haywire? So far, scientists do not have the answer to this conundrum. My own opinion is that the pain was what caused the connections to go haywire. Something started the pain long before the neural connections had a chance to go bonkers. Personally, I think they are looking in the wrong place for the cause of the disease, but any kind of research on chronic pain/Fibromyalgia is good!

What do you think of this chicken-or-the-egg scenario? Did the pain cause the problem in the first place or did the problem begin with the neural connections within the brain? Are your pain connections like the Hulk? I know mine are!

Give me your opinion, I would sure like to hear it! Until next time, May The Spoons Be Ever In Your Favor.

-Aimee

What "Good Days" Mean to People with Chronic Illness/Pain

In some silly ways having a chronic pain condition can be a blessing. I never would have believed this years ago. I mean what is to be thankful for about having an incurable chronic illness? Really though, there are some things that we can be thankful for. Here are a few things that having a chronic pain condition has taught me:

Good days are GREAT! When you live your life day to day not knowing how much pain you are going to be in that day, you tend to get extra excited about good days. A good day for me is a day with low pain levels or other crazy symptoms. You know, those days where you almost feel "normal"? Those days when your symptoms subside enough for you to ENJOY your very existence. You can't help but smile because you feel like you again. You feel like you actually have a personality, like you can just be yourself! These can be ordinary days for every other person around you, and nothing special happens on these days. No promotions, no abnormally nice people, nothing really makes that day special besides just NOT being in an alarming amount of pain. It is almost like you feel like a superhero, a ninja, on these days! And God, does it feel good!

It is funny really. Good days such as those are hard to come by, but when they do you try your best to make sure you get the most of it. I do not even want to go to sleep on those days because of the fear of loosing it. Loosing the freedom to be normal. To be like everyone else. To just have a day to be you again. I fear for not having any more good days because it has been so long, but it is something to hope for. We hope for good days and we pray that they will stick around for just a bit longer.

On those good days, we hold our children longer, we give them more hugs and kisses, and we get to play with them like we wish we could every other day. We spend more time with our loved ones and we get the opportunity to cherish them a little bit more because it is a good day. We spend less time fixated on our war-ridden bodies and have more energy for everyday things. You wouldn't think you would be excited to get the dishes done until you have a chronic illness that messes with your ability to do them. On good days I find joy in cooking, and cleaning, and working, and just walking without a limp. These everyday things would seem senseless to be so excited over to most people, but I know that other people living in chronic pain will understand exactly what I am talking about.

I guess what I am trying to get at here is that I may not like my illnesses, if fact I hate them all with a passion, but I do not hate what they have taught me. They have taught me to love a little deeper, to enjoy life despite my circumstances, and to find excitement in everyday things. For that, I am so thankful.

Who is the one person you would meet if you could?

If there is one person that you could meet, ignoring all factors that would prevent such a meeting, who would you want to meet?

If I could only spend an hour or two with Morgan Freeman, I would be one happy camper. Of course I have never met the man personally, nor will I ever, but his entire demeanor is just magnetic really. I imagine that people just levitate towards him and just want to be around him. Even if he were not famous I imagine it would still be just like that.

I imagine a conversation with Morgan Freeman being scientific and pretty educational. He seems so wise and knowledgeable, and just all around fatherly. To talk about space, philosophy, history, medical technology, and everything in between with Morgan Freeman is kind of a dream of mine.

Now, the fact that he also lives with fibromyalgia just adds to the desire to have a conversation with him. He is really the only widely known famous person to admit to having fibromyalgia. It is unfortunate, but I am happy that he continues to live a fulfilling live despite his illness. It is heroic really.

If you could meet any person, or spend more time with someone, who would you choose and why?

Chinese Water Torture? Chronic Illness? What's The Difference?

Spring time is rolling around, and that is the best possible news for me. It seems like every winter I get trapped in an awful cycle of flares. The most recent flare: 9 months and going strong. That is far too long to be experiencing pain on a daily basis. That is enough to drive even the most level headed person a little mad. It is like Chinese Water Torture:

Chinese Water Torture Device





Living with chronic pain is just like that. I mean these devices were honestly meant to drive people mad, wreathing, insanely, bonkers. It starts with only small drops of water. One drop, then two drops, then three, then four...... and on, and on the cycle continues. Drip, Drop, Drip, Drop, Drip, Drop........

In the beginning you think to yourself: This is no big deal, I can handle this. It's ONLY water. I am alive and kicking, and that is all that matters. You would continue thinking this for a long while. I mean really, this can't be so bad. Drip, Drop, Drip, Drop, Drip.........

After awhile you would begin to find it perpetually annoying having water dripped over, and over on your forehead. Drip, Drop.... You would find it more and more difficult to keep your mind off of the nagging, aching spot where the water continues to weep on your forehead. The water droplets are collecting now, on your cheeks, in your ears, and it has soaked your shirt. You start to shiver, and now realize that you are going to be cold, wet, and continually annoyed by the drizzle still impacting that same nagging spot for a very long time. Drip, Drop, Drip, Drop..........

This is okay. I can make it. It is still only water. I would never let something like the dripping of water get me down. I am strong, and I will make it.

Days pass by, and one by one you make it through each day. Friends and family stop by to make conversation. Simple conversations are enough for you. You are just happy to have some company. You try your best to not focus on the torture inflicted upon you. Drip, drop, drip..... The pure anger that you are experiencing by now is cutting at you. You want to do something, anything, to get out of the situation that you are now trapped in for an unknowing amount of time. Maybe forever. It could be forever. Drip, Drop, Drip, Drop, Drip.......You cannot let this thought go: What if this is my life forever? Can I really handle this until the end of my time? Am I going to make it through this? You are so wreathing angry that you want to just come unglued! You hang in there, letting the days continually pass by you. You loose count of how many suns and moons you have watched pass over you.

Drip, Drop, Drip....... You let go of being angry at your situation because, after all, you must have done something for this to be your fate. You know that there is nothing you can do to get out of having to endure many, many, many more moons of this trickle that now feels like it is plummeting into your head at high speeds. It now feels as if the steady Drip, Drop, Drip of water has been replaced with pebbles. Plip, Plop, Plip, Plop, Plip, Plop..... Sadness replaces your anger as you realize this is only going to get worse, and worse for you.

Oh, I have got to catch a break somehow. Maybe if I just pretend it isn't there it will just go away. Maybe I can pray my way out. Maybe I can do something. Maybe I can escape this, somehow.....

The Plip, Plop, Plip, Plopping goes on and on, never-ending. It has become unbearably excruciating by this point, and you cannot keep your thoughts from deceiving you. I should just call this quits. I cannot take it anymore! Someone, please, untie me!!!! Nobody can help you. They fear if they help you the DEA (Distress Enforcement Agency) will strike them down. The spot on your forehead has begun to become concaved as your skull bone begins to give way to the Plip, Plop, Drip, Drop of the water. The pain that you feel by this point is beyond agonizing. Every single Plip, Plop makes a thunderous sound resonate between your temples. Your head now feels like it has grown to double it's size but still looks normal. You cannot see the inflammation and pain that is piercing through your entire head.

You haven't slept completely in months. You can sometimes nod off and rest for a little bit of time. You have gotten so used to the Drip, Dropping that impacts your face that you now find yourself being able to keep your mind off of it long enough to get some rest. Sure enough, it never lasts very long. One particularly heavy droplet always seems to wake you up much too soon. Ugh!

You find yourself beginning to let the sadness overtake you. There is no way out of this mess. There is nothing that can save you. I just want 30 seconds of relief, that is all I ask for! 30 Seconds! Please, give me 30 damn seconds of not feeling this water drip on my forehead. I will do ANYTHING! By this point you are screaming in pain. You are praying to every God you can think of to ask for relief. You are begging, pleading, and seriously fearing going mad. The Distress Enforcement Agency patrol the area to be absolutely sure that passersby do not attempt to deflect to some of the drops from your reddening skull.

I can't let myself go mad! I can't let that happen. I told myself this was nothing. I have got to make it through this. I will find a way.

You try to distract yourself by any means possible. You focus your attention on every thought that you capture and cling to it for dear life. You think of your family and how it must pain them to see you locked in that state. You thank your God that they cannot see the true amount of torment that you are experiencing. After all, all they see is a simple drop of water leaking out in a seemingly nonspecific way. While you are contemplating scalping yourself for hopes that it will relieve some of the pain, they only see Drip, Drop, Drip, Drip, Drop, Drip, Drop, Drip, Drip, Drop...... They hardly even notice the droplets escaping from the reservoir. After awhile they begin to wonder why on Earth you are letting little drops of water get to you so much. Plip, Plop, Plip....  They visit less and less often, sure that you are over exaggerating how utterly painful a few drops of water can be.

Slowly, but surely you begin to notice the worst of thoughts trafficking your mind. You loose any sense of emotion that you once felt. But, you keep on going. Not because you can, but only because you have to. You have no other choice. Plip, Plop, Drip, Drop.....

Years pass by. Your not even sure how many. Everyday is the same thing. Drip, Drop.... Every moment is the same thing. Pain, grief, and it goes on.

The only choice you have any more is to change yourself. You begin to focus only on the good thoughts and let them linger longer. You clutch to them and nurture them like they were your only child. You feed those positive thoughts until those are the only thoughts you can think. You start to find a melody in the pattern of the water droplets Drip, Plop, Plop, Drip, Plop, Plippity, Plop... You learn to ignore negative thoughts, and thrive on the positive ones. Suddenly, life kind of seems worth living even whilst the dropping and plopping continues on the outskirts.

Of course, living in those circumstances warrants for some mental breakdowns, periods of grievance, and many days spent being abnormally pissed off. You can carry some hope knowing that someday you just might be let go. Time continues on, and you get through each day One At A Time.

Chinese Water Torture; It Sure Is A Lot Like Chronic Illness

For My Love, A Letter From Wife WIth Chronic Illness

I wanted to write a letter to each person that my illness affects in my life, and it will take me some time to get them all done I am sure, but I am going to start with the one person that my sickness affects the most (besides me, of course), my husband. I plan on making it fairly universal so that if anybody else would like to use it, please be my guest. You are more than welcome to copy and paste, or print it off for your significant other, or change it up how ever you want. I would appreciate some credit of course, if applicable.

To my significant other,

I call you my significant other because you ARE the most significant person in my life. My life is intertwined with yours in every way possible and that, to me, is a huge blessing. I do not want to even imagine how my life would be without you. I do, however, sometimes wonder how your life would be without me in it. I say this because I frantically worry about how much better off you would be if you didn't have the difficult task of having a wife with chronic illness. Maybe things would be much more simple for you, maybe not. Not only does my illness affect me in a profound way, I know it affects you too, and I wish I could change that.

Of course you say "I took a vow, in sickness or in health." You should know that it means more to me than anything that even with a sick wife, you are sticking it out with me. You are my partner, my soul, my lover, confidant, and my shoulder to lean on. I know you will always be there for me despite what is "wrong" with me, as I would for you. But, it does not make me feel any less guilty for putting you through it. You deserve the best of the best, and I will never be able to give that to you. Sometimes, knowing this, I draw back. I put my walls up, and close you out. I realize that this does not help, but it is hard not to when I feel like I do not deserve the love that you give me.

With ongoing, ever changing, and extremely unpredictable pain, exhaustion, and other symptoms it is difficult to keep my mood stabilized. This is probably one of the most difficult things for you. One day I can be in a fine mood and be able to participate in just about anything, and the next I am a dark storm cloud about to let the lightning strike at any moment. You should know that I do try my best to keep my mood level and I also try to not let it affect anyone else, but I know it does. I am sorry for that. I do my best. When I am having a negative mood, I attempt to stay quiet and to myself so that it doesn't rub off on you or anyone else. It has to be hard coming home and wondering Hmmm, I wonder what kind of mood my wife is in today?. I am working on that and I am sorry, I'll get there.

I know you also have a hard time when I do not talk to you about my illness. I choose not to talk about it so that I do not bring anyone down with me. I do not want you to think I am just whining to you or wanting you to feel bad for me. If something is bugging me bad enough to say something about it, then it is really bad. Besides, when is there a "good" time to bring it up? It affects every waking moment of my life, and every plan or decision that I make, so I think about it often. Sometimes, I get so lost in trying to figure out what is going on with my body that I forget to include you in it. It is me, you, and this illness now, and I have to start remembering that you are involved too. I want to include you, I just don't know how. So, please if you want to know something about it, ask. If you want to know how I am felling, ask. If you want me to describe things to you or you are confused about something, ask. Seriously, ask me questions! Not only does it make me feel more comfortable talking about it, it also shows me that you care and you want to be included.

Working full time with an illness such as this is quite a feat. I am one of the 25% of people with fibromyalgia that still can work. I am damn lucky to still be working, and to be frankly honest, I do not know how much longer I will be able to hold a full time job. I love working, and I would feel pretty useless without a career. In order to keep my career going, I need your help. Stresses at work do not usually determine if I am having a "bad" or "good" day. My level of pain is what determines if my day is good or bad. A bad day, or a painful day, at work is akin to a full day of elk hunting. I am so beat down and tired by the end of my work day that I literally have barely enough energy to do anything else. Yet, I try my best to go pick up our boy, make dinner, clean up the house, do bath and pajamas, and bedtime. I never have to do all of this myself because you are there for me, always. You never not help. You are so good about helping out around the house that I feel too guilt to ask for any more help. But, babe, there are some days that I simply cannot do it without putting myself into a worsening flare that will leave me near useless for many more days. Those days, you might have to do more than me, but on my good days, I will always make up for it.

I always worry that I keep you from doing the things you love most. I know you imagined us being that couple that hikes mountains together, hunts together, moves massive boulders together. "The couple that hunts together, stays together." I love going with you. I love our time out in the woods hiking, camping, and shooting. There are just times that I cannot participate like I want to. There are times that I may be able to go, but not be very involved. There are times I will not be able to go at all. It just depends on my health at that point in time, but believe me, I want to participate, I want to be there. Please, under no circumstance, let me stop you from going. EVER. I am just as happy at home writing, reading, cleaning (yeah weird, I know), and spending time with the kiddo. I will never use my illness as an excuse to not go because I do not want to go. I will never use my illness as an excuse, period. Know that if I say I cannot handle going, then I really can't.

More often than not, I push myself to do things, go places, that I really shouldn't. I push my body to it's absolute limits just doing normal everyday things that most people would not find difficult at all. I push myself until I can no longer push any longer. I struggle through every single day, and I keep pushing anyways. I push myself into worse health, into flares, because I am too damn stubborn not to. When I have good days, I try to do every single thing that I have been putting off while I was not feeling up to it. I feel good, so I get things done. Then, because I pushed myself too hard on that good day, I receive 5 bad days for that 1 good day. Everything I do has a price and I have not figured out how to balance what I put out with what I have to give yet. I have had this illness for well over 6 years and I still have not figured that part out yet. So, maybe if you could help me find some balance, I might pay more attention to it. Instead of asking if I want to do something (because I will always say yes), maybe ask if I am up for that something. You would be helping me remember to keep some balance.

More than anything I know that this illness hurts you too. I know that it hurts you to see me in pain, and not be able to do anything to help. But, you just being there for me helps immensely. When I am hurting, I use distractions to help me through it. Yes, that means I spend a lot of time on my phone, or on my computer, or reading a book, or plain just pacing around the house. It is a coping mechanism for me, and it does help significantly to distract myself from my vengeful body. Please do not take this as a personal thing because I swear it is not. So, sometimes just keeping me distracted is helpful to me. Sometimes just holding me. Sometimes just letting me cry on your shoulder, and sometimes just sitting quietly with me. No matter what, you being there, that is what helps me the most. You are helping me whether you know it or not. You are the most help I have. You are my anchor. You keep me going strong because you are so strong for me.  I do notice the little things, and the big things, you do. Thank you for everything you do for me and for being here to have and to hold. Forever I am yours.

With love,

Aimee Myles

Blog Spotlight: Chronically Creative

I am spending some much needed alone time while the toddler is napping reading blogs. I stumbled across this post in my random browsing and it is one of the most heartfelt and relatable posts I have ever come across. I feel like I can relate to what Emily, Miss Chronically Creative, writes as she explains what it is like trying to maintain relationships with a chronic illness. Finding things that we can hope for during our most lonely periods is important. For me, it is reading blogs and now writing one. I find comfort in reading other people's stories, and it is one thing that keeps me going. Thank you Emily, if you are to find this. Your blog is very inspiring and I appreciate your honesty.

Check it out here:

Chronically Creative

http://www.chronicallycreative.net/2012/09/finding-hope-in-loneliness.html

HUGS; 6 ways To Avoid Them

This is typically what I think to myself when people try to hug me. Not because I don't like hugs, but because they stinking HURT! Especially when they squeeze just a little bit...... and it feels like they are the Hulk and they are crushing every bone in your body with little effort. There are a few things you can do to avoid hugs:

1. Awkwardly pull back into a half-ass handshake, and act like that was what you were going for the whole time.

2. Point into space and claim you saw aliens. "Hey, look over there!"

3. Claim you are terrified of germs. "Eww, gross, don't touch me."

 

4. Act so completely insane that the person decides not to hug you.

5. Run away, hide, or escape.

 



6. Flat out deny the hug.

 

 

-Aimee

Speaking Up On Fibromyalgia

Fibromyalgia and chronic pain conditions are awfully lonely ailments to live with. Not many people know that millions of people live in nearly constant pain. It is not common knowledge. In fact, although fibromyalgia has been around for numerous years, it has only been almost fully accepted within the last few years. Most of the time if you were to tell someone that you had fibromyalgia they would look at you like you have 8 heads. So even if it is accepted by the medical community, it is still not a condition that is widely known by everyday people. Of course, once you are diagnosed, your family may become more knowledgeable about it if you are lucky. They might try to do some research and learn the most they can about it, but most won't. Though, in my own opinion, if they truly cared they would make an effort to at least educate themselves about your condition and how it affects you. But, on the other side, it is also our responsibility to help them become more educated about our condition. This is the hard part! There are some resources out there with things you can print off for your family members, but most do not really touch on what it is really like to live with chronic pain. So what can we do? We could make our own pamphlet with all the information we feel is relevant to our situation. We could write a poem or letter to our family members. We could draw what we think chronic pain looks like. We could write a song or prepare some sort of speech. Whatever your talents are focus on that to get you started. If you are good at drawing, start there. Let's create some amazing informational pieces for family members that millions of people could use to help them describe what it is like. Let's raise awareness! If you know of any great resources, please share.

Really, one of the first tasks to tackle after being diagnosed is to talk to your family and friends. This sounds so simple, but yet it is one of the most difficult things to do. I struggle with this every day. One thing we always worry about is that we won't be taken seriously. This usually stems from the years it takes to even get a diagnosis and the years we felt misunderstood and ignored by our doctors, family members, and friends. We could have spent years of our lives being thought of as lazy, crazy, or as hypochondriacs, I know I did. Those were the most difficult years of my life, and I just learned to change the way I relate to people including becoming more closed off about my illness. Besides feeling misunderstood we also don't want to complain to people. When we do talk about it, we assume that the person having to listen to us thinks we are only complaining and whining about our misfortune when really, we just need to vent, to be heard. We worry that we will put extra burden on our loved ones by telling them about it. We don't want to make others worry about us or feel sorry for us, we just want understanding. Mostly, we don't want to hurt people, and we know that the people that love us hurt when they know we are suffering. It isn't easy on them either. Watching the one you love suffer and not being able to do anything to help. I imagine it is a harsh reality for them as well. So, not only does our illness cause us to suffer, but also those around us as well.

If you broke your leg or have some sort of skin condition, there is at least some story behind it or some physical evidence of it being there. People can see it. You have a cast that is visible and often other people have broken something and can relate in some way, or they might even ask about it. It is not like that with an invisible illness. For the most part, nobody has any idea you even have a chronic illness. Nobody is going to ask about something they do not know about. Nobody is going to say, "Oh, how much longer until you are all healed up?" (and if they did, we would probably get a bit bent over the comment). There is no healing of chronic conditions. They are just that, CHRONIC, meaning long-term, FOREVER! It will not go away, and it cannot be cured. Yes, there are things that can help some, but it is something we will live with for the rest of our lives. The pain, the fatigue, the brain fog, the unbearable twitching, and wreathing, and crawling, and stabbing sensations. The bowel irritability, the depression and anxiety spells, the exertion intolerance, the hundreds of symptoms. Those are not going away. In a way, we learn to live this way. We teach ourselves how to ignore the pain and twitching. We learn how to hide our symptoms. We learn how to get around and space out our days. We learn what helps and what doesn't. Honestly, chronic illness is very time consuming. It is amazing how much effort and time goes into trying to make yourself feel just a little bit better. Hours and hours every month spent in doctors' offices, physical therapy, and other therapies. Not to mention the amount of time we spend trying to learn as much as possible about your particular illness. I don't know about you all, but I spend hours learning about all of my illnesses and trying my best to find things that can help me more. I like to be educated about whatever I am dealing with, so much of my time goes into that.

In all reality, it's not like you can strike up a conversation about pain. Nobody really wants to talk about pain or unfortunate situations. It is only in our nature to avoid subjects involving pain and unpleasantness. Besides, trying to talk about our unpleasant symptoms only makes other people feel uncomfortable. We see it, and we really try not to make people feel uncomfortable with us. We feel as if we are dragging our loved ones down with us. This is not something we want to do. Hence the reason we typically just stay quiet about it. There is no sense in making other people awkward and uncomfortable along with us. Why drag others down with us? But, what happens when we avoid talking about our situation for extended periods of time?  Well, we go bat-shit crazy is what happens.

We tend to start secluding ourselves from the outside world for fear of the pain brought upon ourselves and others. We fear pain so much that it controls every waking decision of our lives. We start obsessing on how to make ourselves better. We hide from our friends and family so they don't find out how bad it really is. We fight tooth and nail to make it through the rough times, and we use every bit of energy trying to get well again knowing that it may never happen. We loose ourselves in the midst of our illness.

If we do not find some sort of way to communicate, our illness can and will consume us. So, I suppose that whether or not we are perceived as whining, lazy, hypochondriacs we have got to speak up and speak out. Write a poem, a speech, a letter. Make a blog, a diary, a craft collection. Raise awareness and don't be ashamed. Attend a support group, or create a chronic illness event. Do what makes you happy and allows you to have a voice. Let's stop being ashamed, scared, and secluded. Let's find a cure!

The Rescheduling of HCPs and How it Affects People with Chronic Pain

The DEA's rescheduling of narcotics has affected the chronic pain community in a huge way. It has resulted in only more suffering for those who live with chronic pain. Many patients have lost their access to pain prescriptions all together, and those that were able to keep their prescriptions are now under more scrutiny than ever. Patients that were able to continue their prescriptions after the rescheduling of narcotic medications essentially began being treated as potential criminals. They are often asked to sign contracts by the doctors who prescribe them their medications allowing the doctor to take a urine sample at any time, any day. This is for the same reasons that are for the people on probation and parole; to make sure they are not doing anything they shouldn't. This protects the doctor, and allows the DEA to have control over how much of the prescription medications are given out and watch to see if they are being abused. These contracts typically contain components forbidding the recipient from selling or giving their prescriptions to other people. Something someone in severe pain most likely would never do. They need those medications for themselves and cannot afford to loose them.  The contract may also allow your prescriptions to be counted at any time as well. Under the DEA's restrictions, you may also be subject to less medications for per refill, add needing a physical prescription versus an electronically sent prescription for every single refill. This means that you must visit your doctor every time you need a refill to retrieve a paper prescription. More doctors visits means more money is needed for co-pays, deductibles, and travel. Travel is especially expensive for those who travel to a neighboring city for doctor's visits. This results in time needing to be taken off from work as well. Less pay and more need for income to pay for such a luxury as to have some pain relief. Yet, those of us that cannot even obtain a prescription for various reasons are envious of those that have the chance to even endure that struggle. We would jump through those hoops and endure the extra milestones just to receive such relief.

Unfortunately, these restrictions are not easy on the medical providers either. Often, they feel like they cannot meet their pain patient's needs. If they do prescribe a certain amount of prescription pain medications then they soon become the subject of scrutiny by the DEA. They can have only a certain amount of patients on pain medications (here it is 12) before they start being investigated. Out of the hundreds of patients they see, they must choose the 12 most deserving people, and hope to find some backup form of relief for the others. The problem is, with chronic pain, there is not really any other form of relief. Please realize that your health care provider probably does not agree with these restrictions either. They are only trying to protect themselves and their practice from the DEA, and that is not something we can take personally.

When people in chronic pain do get a pain prescription from their doctor, getting it from the pharmacy is a whole other problem. Often, the pharmacies run out because of the current restrictions. Even if they do not run out, the pharmacists are able to choose who can and who cannot get their prescriptions. People who pick up prescriptions for pain killers from pharmacies often feel like they are under tremendous scrutiny by the pharmacists and others around them.

So, those of us with pain are often left in the sidelines of this "war against narcotics". We have very little access to treatments that we do find helpful. Some people may benefit slightly from their antidepressant/diet/exercise regimen, but most do not. Although antidepressants are helpful for those that do exhibit depressive symptoms, but what about those who don't? I was not depressed before I was started on a whole array of different antidepressants. After taking them for some time, I became very depressed. They are not meant to be used for people who are not depressed to begin with because they tend to have the opposite effect. I have tried the two FDA approved medications for fibromyalgia with little to no improvement. I take my vitamins and minerals. I take my muscle relaxers. I use essential oils. I have regular chiropractic adjustments. I do stretches. I exercise regularly. I do acupuncture. I eat well. I fill my body with mostly healthy things. I have detoxed. I research regularly and try new things ALL THE TIME. I have tried nearly every trick in the book to find some sort of relief, but so far not a damn thing has made enough of a difference for me to continue it. The doctor has no idea what to do with me, my family has no idea what to do with me, I have no idea what to do with me. I feel like I have reached to end of my rope, and that nothing can help me. I will keep trying of course, but I am running out of things to try.

Now, I kind of feel like there are two solutions to help alleviate some of the pain, yet they are both illegal. I could go out and buy a pain prescription from somebody, but for many reasons, it is a bad idea. I have thought about it many of times in the past, and still do. I mean if I cannot rely on my doctor, or the DEA, to at least help me make it through the day without excruciating pain, then maybe I should just help myself. Here are the problems with that: I could wind up in the legal system, and trust me, I have met plenty of people that have wound up in the system for 6 plus years for a pill or two. If it is not your prescription, it is a big deal. Very unwise, but doable. Imagine the price of living that way though, both for the money cost, and for the chance you were caught. That is jail time, and if you are lucky, pre-release, then probation for many years after that. Nothing I am interested in. If I beg my doctor then I will only look like a drug seeker. But, really, I am only seeking some relief! My age is an obstacle, I mean who would give a pain killer script to a healthy "looking" 24 year old? I just want something to help!

Another option is marijuana. I do use marijuana for my symptoms. No I do not just lounge around my house eating cookies, no I am not a "stoner", nor do I abuse the herb. But, to be able to find something that could bring some relief with it is downright wonderful. It helps, not tremendously, but it makes a noticeable difference in the amount I can accomplish with it versus what I can without. It allows me to complete my chores around the house, cook meals, and everyday tasks that need doing. I do not want to sit around when I am using it, I want to get things done because I feel well enough to do them, or at least push my way through them. Marijuana allows me to do that. Problem with this is, it is not a medication that I can take at work. So, work becomes the most painful and difficult part of my day, everyday. 

The troubling part is, my marijuana use is illegal. It is not legal in my state except for medical reasons. But, do not have my card because of the cost, criticism, and paper trails that come along with having one. My doctor also has not approved of the idea, so I haven't tried very hard to get one. Because of the inability to receive prescription pain killers, I have had to illegally obtain something that will help. I do not want to be a criminal, really, but I felt like I don't have much other choice at this point. Ah, thanks DEA! Congratulations you are creating thousands of criminals. Just so you know.......

Hundreds of thousands of people are left to rot in their pain state with little help from any direction. It is unfortunate being one of them. With no place in the medical system, chronic pain sufferers are kind of like the lonely outcast group with nowhere to turn. I don't know about you all, but I feel very let down and neglected by the entire health care system, the DEA, and the political groups that get to decide our fates.

In the long run, I am going to assume that it is only going to take a few more years for the legalization of marijuana, and I cannot wait for the day that I can medicate my illness in a legal manor. It is my illness, and I should be able to treat it the way I feel fit.  I am tired of living in pain, and I am tired of being left on the sideline in so many ways.



This is a judgment free zone, so feel free to leave a comment. I would like to hear your opinions, thoughts, ideas, and anything else.

-Aimee

"Normal People SIck"; Visiting the Doctor

One of the troublesome things about having fibromyalgia is noticing when you have something else going on in your body besides the "typical fibromyalgia" stuff. We are so used to things just not being right, so when other symptoms start cropping up we dismiss them and assume they are caused by the fibromyalgia. But, what if they aren't?

I spent the last week or so in a dizzy haze. Every time I got up from my chair, rose from bed, or even moved too quickly, it would result in sudden onset dizziness and nausea. Okay, I thought, more vertigo, yeah! My body would not let me sleep through the dizziness, nausea, and hot & cold sweats, so it had been well over 2 straight nights of insomnia. I was already feeling unwell and that sure didn't help, but what's a couple more symptoms, really? No big deal, I got this! Until.... I hopped in the car and starting driving to work. As soon as I came to a park my mouth starting filling with saliva, my chin started quivering, and well, the morning handful of medications tasted much worse coming back up. WOW, they sure do burn! I ran into the building to grab a glass of water to wash out the taste, except running was not the best of tactics. As soon as I came to a stop in front of the watering hole, all I could do was hold on to the wall to keep myself from falling into a vortex of queasiness, dizziness, and more vomiting. Let's just say, I did not make it at work for very long. I could not possibly focus on anything, let alone be productive enough to get anything done. I have experienced the nausea and dizzy spells before, several times. It's a trick of the trade really. But, I RARELY vomit. Something was not right. This had been getting worse and worse over the course of over a week. Maybe this wasn't just typical fibromyalgia stuff, maybe this was something else? We all know that inner argument we have with ourselves, where we try our best to push it off on being the fibro instead of something else. Not until it really proves to us that it isn't will we finally do something about it.

Finally, it got bad enough to where I simply had to go into the urgent care. Though, not before I started fretting about going in to find out that there is nothing going on, again. Not before I pictured one more doctor giving me the "What the hell is wrong with you?" look, again. Certainly not before I pictured the lab tests giving no concrete answer, AGAIN.  This is what I remember any time I think about going in and I always wonder why I really bother. I mustered up the courage to go in anyways.

I arrived at the urgent care, thinking that I would head straight back to work after I was done there, but 3 hours later I left with little hope of getting back to work that same day. After one hour in the quickly filling waiting room, I finally was moved to a room. The nurse took all of my stats per the usual. Normal heart rate and rhythm, normal temp. (funny because mine must read several degrees cooler or something), normal respiratory rate, normal blood pressure, normal, normal, normal. After that, I fell asleep waiting for the doctor, so I really could not tell you how long I waited. I did not even care at that point, it was just nice to rest my head after the insomnia I had been experiencing. Anyways, Dr. came in and started asking the typical questions. What are your symptoms? I am always confused on how to answer this question. Do I include the usual stuff, the unusual stuff,  just the new stuff, or a combination of what ever I find relevant? Usually I chose the latter. But, what if I am missing something because I am dismissing it to fibromyalgia? Or what if I accidently add symptoms that are typical fibro and only confuse the process? Next question; Are you experiencing any pain? Well, YEAH! That is what I want to say, but that is not what they are looking for. Okay, so is there any pain that recently started that might have anything to do with what is going on inside my body? Could they all be? Should I tell him everything that does hurt? Should I just say that I am not experiencing any new pains? Should I just lie about this or should I tell him "everything hurts"? I hate that question! How the hell are we supposed to answer that?!?! Next; Are you having any bowel or bladder difficulties? Well, yeah, but they started years before this, so do I say yes, or no? Do I really need to tell him about my bowel habits if I find it not relevant? Does your stomach hurt when I do this? *poke* *push* *knead* You can't really hide the grimace on your face when they start shoving their hands into your intestines. Oh my, let's make sure you don't have kidney or liver problems!!! No, Dr. it must just be regular pain, I say. "Regular pain?" "I'm sorry, no pain is regular." Well, for me it is. Of course, he checks markers for kidney and liver dysfunction just to be safe, any Dr. would.

It is amazing to me how much more complicated regular old doctors visits are for people with chronic pain conditions. I do not want to lie to my doctor when I get the regular rundown of questions, but I simply do not have the energy to try to explain what exactly I mean by every answer I give. Usually, getting into my RCP is at least a month's wait, so for cold/flu, and other infections and such, I typically have to go to an urgent care facility or walk-in clinic. The problem with this is the doctor's in such a place usually do not have much practice in chronic conditions. Simply put, we would not go see an urgent care provider for anything chronic because that is what specialists are for. Usually, this also means they have little background in ME/CFS, fibromyalgia, or chronic pain conditions. This just makes it more complicated for us. We usually have to find out what the doctor knows and what they don't so we can give our information accordingly. More often than not, we are more clinically capable and knowledgeable about chronic conditions than they are. Fun fact: In the typical 8 years of schooling that a doctor receives, they cover 'pain management' for an entire 2 hours! TWO HOURS! Chronic pain is considered to be the biggest medical drain on society, and they spend 2 HOURS learning about it. NO F***ING WONDER!!

Well back to the visit; I did get the "What the hell is wrong with you?" look a time or two, but I didn't have enough energy to care really. I got a urinalysis and a basic blood differential panel. I took another "nap" while waiting for the results. Nothing too abnormal. Just a high white blood cell count. (For some unknown reason I have had a high white blood cell count almost every single time I have a basic blood panel, except for once since 2010; roughly one or two normal results out of 30 times) I did not find it strange by this point, but what he found strange was that I had an abnormally high leukocyte (WBC) count, but it did not specify which one was high. Leukocytosis (elevated WBC count) can usually point to the cause depending on which kind of white blood cell is the one that is elevated or decreased. Usually one of the types stands out to show more information about the cause. If it shows increased percentage of basophils, for example, it would be more likely an allergic reaction, and an increased percentage of lymphocytes would be more correlated with a bacterial infection per say. So, he really was not sure what kind of infection it was, or even if it was an infection. He quickly prescribed me antibiotics (another one of my pet peeves), prednisone to speed up the healing, and an anti-nausea medication. He said that he was assuming it was a middle ear infection, or vestibular neuritis. At that point, I just wanted to get the heck out of there, so I gladly agreed that that could be the problem, and went to fill my prescriptions. Hopefully, it is the problem and I can get back to normal Me-ness.

Getting other problems on top of having fibromyalgia is often extremely confusing. In some sense or another, our immune systems are thought to be out-of-whack. We typically get strange and unlikely infections, but we often have trouble really identifying the overlaying problem when it starts. I know I do. I could have had this "infection" for months and not have known. But, it is important to really listen to your body. If you feel that there is something "different" going on, then it is always wise to go have it checked out. Many of us find going to a doctor outside of our fibromyalgia network much more difficult than the typical person, so we generally wait until we know we absolutely need to. Sometimes this results in more complicated infections or more severe illnesses because we put them off without treatment. When we are sick with some sort of infection or other illness, our fibromyalgia tends to flare as well. This results in increased pain and lethargy, which makes our other illness more difficult to deal with than what is normal. A cold or ear infection can literally wipe us out completely, especially if we are teetering on the edge of a flare as it is. All this noise and sickness makes our immune and central nervous systems go even more haywire, and begins another cycle of extreme flare activity.

Although, we usually detest the idea, it is a good thing to go in and make sure there is nothing else going on when you feel more strange than usual. There is, though, usually harm to be done if you put off going in, causing even more flaring.