My phone scared the crap out of me today. I don’t know if it is an iPhone thing or a AT&T thing, but that little sucker has a LOUD buzzer on it for weather alerts.
The powers that be apparently thought that the weather warranted an emergency alert. I wonder how much money goes into these things? How much does it cost to set up the systems that detect the weather conditions? Today’s Weather alert was for dust storms but with that dust I saw a whole lot of roiling black clouds high above the wind blown dust.
I could save them a ton of money.
My body told me yesterday that things were changing. Hours before the first alert came through the pain in my body had reached epic proportions.
I remember as a child hearing my grandma say that it was going to rain because her bursitis was acting up. I had no idea what that meant exactly just that it was some sort of ache that grandma had. Over the years I heard doctors say that people couldn’t predict the weather that way, but now I know they are wrong.
Maybe it is the change in the barometric pressure, but I feel the aches, the chest pains of the costochondritis, the deep chest pain that cannot be alleviated even with my pain meds and the fibromyalgia from head to toe. I am struggling to even type and I’m pretty sure it shows that my brain isn’t 100%. My fingers shoulders and arms ache and are clumsy on my keyboard where my fingers are usually speeding along.
The fibro fog, the pain, the exhaustion are all kicking in. I managed to repot a bunch of houseplants to consolidate them for someone to keep an eye on while I am off on my adventure, but I am sure glad I’m not leaving today. Yesterday or the day before I would have been ready, but today, no today I could not handle it. As I can no longer handle the pain of typing right now.
So off I go taking my weather predicting body to bed where I can rest and sleep and fight again tomorrow.
I love this time of the year, Halloween, then Thanksgiving and as the topper, Christmas!
For years our house was the go to place for Halloween in the small town we lived in up in Utah. Flyers were printed, decorations hung in the trees out front, complete with flying witches, ghosts and pirates. We built on to the decoration list each year and each year I called the Domino’s pizza in town and ordered several hundred dollars worth of pizzas. Did I mention the part where the flyers were distributed to the ENTIRE high school? Oh, and there was only one high school in the entire county? My son was a bit of a social animal and always managed to line up a band of some sort. My step-son kinda just went along for the ride, he wasn’t anywhere near as social but he loved the party too. My step-daughter was there for the first party but had moved out and was starting her own family by the time the others rolled around. My other step-son, well we will talk about him some other time because my heart aches to talk about him.
I made little mummy fingers from Vienna sausages, strips of tortillas and ketchup. There were witches hats made from Keebler cookies and Hershey’s kisses. Spiders made from little peanut butter filled crackers with pretzels poked into the sides for legs. There was Jello filled with gummy worms and chocolate pudding and crumbled Oreo’s (graveyard “dirt”) with marshmallows and candy corn. Yeah it was a junk food heaven. (if anybody wants recipes let me know) What more could a teenager want?
For the punch we had rainbow sherbet mixed with Mt Dew for a cool greenish tinged and quite frankly really gross looking but delicious drink. To give it a little extra pizzazz I dropped a chunk of dry ice down in the bottom for a bubbling smoky looking brew. The kids loved it and I loved seeing the looks on their faces when the fog bubbled up from the bottom of the punch bowl. After the first year I made sure I had extra Mt Dew and sherbet because it went faster than I ever would have dreamed.
Now you might think I was crazy to take all of this on and maybe I was. My ex wasn’t much help when it came to doing….well anything, involved with this party. But I wanted this to be filled with good memories for the kids down the road when they were adults and looked back on their high school years. I did all of this for them.
I am also a realist. These were teenagers and this was a party. The bottom of the flyers had our contact info for the parents of the kids and a brief statement that anybody caught drinking or smoking pot or whatever would be immediately ejected from the party. The flyers also invited the parents to stop by anytime should they wish to. Against my ex’s wishes I also called the Sheriff’s Department that covered our area and invited them to the party as well. Every year. This was clearly stated on the flyer. I know to a lot of people that probably makes me sound like a total party pooper. Well I really don’t care what anybody thinks about that because I took my job as a parent very seriously. My ex….well he had different views. We lived in a very tight knit community where the majority of the residents were Mormon. We were not, but we had relatively good relations with all of our neighbors. I was never really sure what all of the adults thought of the parties but the kids raved about their memories to me on more than one occasion so I was satisfied.
I have some bittersweet memories of these parties. My sons (yes I looked upon my step-sons as mine as well) had a lot of friends that were frequent visitors in our house and called me “Mom” as they walked in and out of our house on a regular basis. I spent many hours preparing for the parties with my sons and my pseudo sons. The decorations were elaborate as well with the animatronic 6 ft. tall Butler at the door and the motion activated ghosts, witches and pirate tied to the trees, upstairs balcony railing and front porch. There was a fog machine, strobe lights and black lights. By the time that our “guests” started arriving I was usually so exhausted and in so much pain that I personally was unable to really enjoy them.
I was forced into the position of being the party Nazi, walking through all parts of the house, yard and even the street to check the parking situation and make sure nobody was out there drinking or smoking pot. My ex was supposed to share this duty but wasn’t really much help. To this day my heart becomes filled with pain as I recall catching him coming out of our bedroom smelling of pot himself. Parents are supposed to guide their children and show them by example and this was a constant war between us. For the record, at the time of the parties ( I really don’t know the laws now) possession or being under the influence of marijuana was a felony. Utah is harsher than most states.
Our driveway in front of the detached garage became the stage and concert venue and we had strict rules about the noise and the cut off time. I made sure ahead of time that the neighbors knew what to expect. My ex was supposed to be keeping an eye on the bonfire that was in the backyard. This was a popular part of the Halloween party since this was Northern Utah in October and was pretty darn cold most years. My pseudo sons were always very helpful and I loved them more than they will ever know. I thanked them for their help every year but I never told anybody about the physical pain I was in due to my fibromyalgia and my blown disks. I kept soldiering on.
Looking back at the parties I really can’t think of anything I would have done differently except maybe to express my thanks again and again to the kids that helped me set stuff up. I don’t know if I should have told them of my physical pain or not. There was nothing anybody could do. A couple of years ago when I went to retrieve all of my belongings from the house my ex and his girlfriend now live in, I took all of the Halloween stuff. He said he would never use any of it and so I took everything. He made the nasty remark that he could afford to buy new stuff and I couldn’t. Yeah, real nice.
When I decorate now I have memories of putting up these same items with all of those boys that helped and when I see the looks on the faces of the little kids that come to my door I am happy. I won’t be here at my home this year, I will be on another grand adventure in Georgia, but I am looking forward to decorating again next year.
“Courage is being scared to death and saddling up anyway” John Wayne
I was surfing the net and perusing tons of other blogs to see how everyone else was doing….well EVERYTHING. Blogging is new to me even though I have had ideas and stories wandering around my head for years and years AND YEARS (I’m an old broad) when I came across Mo’s Musings and it took me back to a wonderful/horrible day that forced me to face once of my worst fears.
Traveling has always been a love of mine. I have this insatiable curiosity about people, places, animals, especially animals and nature in general. Hiking is something that I can no longer do, due to the condition of my back, but even through the horrible pain that comes with both the back pain and my fibromyalgia I have pushed through and taken some amazing walks through places that many people have not been lucky enough to see. I have traveled through both Yosemite and Yellowstone, Mt. Rushmore and Crazy Horse and even the Valley of the Temples and Nu’uanu Pali Overlook in Hawaii.
My ex-husband (well the divorce isn’t final but…) and I created a company that serviced golf courses, parks and many state and county agencies all over the Western United States. Due to the large area that the customer base covered, we spent many hours on the road and traveled to many different states. One of the customers was located in Big Sky Montana in an exclusive…..well I should underline and put in bold that word….EXCLUSIVE place with properties adjoining a super exclusive private golf course. So exclusive in fact that they wouldn’t let ME on the property. Say what? I was a partner in the company but unless I was actually performing manual labor I wasn’t permitted on the property. Alrighty. So we decided I would spend the day in one of the local nature trail areas with a couple of books. (I read really fast)
Here’s the thing, when I was a child there was this horrible incident at a campground wherein 2 women were killed in the same night during horrible vicious bear attacks at a national park. The attacks were brought on by ignorance and the habits of humans to actual dump trash to ATTRACK bears. Back then nobody really understood the dangers and what could happen with these wild animals. This was during the sixties and was one of the incidents that prompted the national park service and others to implement new standards in parks for bear safety for both the public and the bears themselves.
I was nowhere near this incident but even when I was young I was a voracious reader and had a vivid imagination. My father had a second job he did at night delivering newspapers to the machines that dispensed the local papers. On the weekends I would often go to help and it was my job to count out the proper amount of papers to go into each machine. The headlines this particular night were about the horrible bear attacks and the deaths that resulted from the attacks. Over and over and over, all night I carefully counted the papers and by the light of the overhead light in our van, I read. I still to this day, over 40 years later, remember those headlines and the horror that paper contained. To this day, I will have the occasional nightmare featuring a bear. It doesn’t matter how often I remind myself how remote the chances are to have a fatal bear attack, the fear remains and I am forced to face it.
Try facing a fear of bears while stranded in a remote park in Montana. Yeah right. Just to make things clear, there are GRIZZLIES in this area. We had been told by locals that there were bear sightings of black bears all of the time at Ousel Falls and the occasional grizzly. Mmm hmmm.
My heart was racing before I even got out of the truck. We had checked out of the hotel we were staying at the night before, it was on the other side of the mountains closer to the first job we had done. There was no café or any other place for me to wait within miles.
So he dropped me off at the trail head for Ousel Falls. I have heard that since then they have put a port a potty or something at the top of the trailhead. At that time though there were no facilities of any type. There were the usual signs telling you to keep your dogs on a leash and to clean up after them and a sign telling you to pack out what you pack in. (In other words don’t leave trash here)
There wasn’t even a trash can at the top of the trail head because well, that would attract BEARS.
We had actually walked this trail together with our kids on a previous trip. I was scared then but we were in a rather loud group (boys, ’nuff said) and the more noise the better as far as bears are concerned. I recalled that the very bottom of the trail had a little area that would be suitable for me to prop my ass on a rock and read. I really was trying to be brave but my hands were shaking as I tucked a water bottle into my jacket.
There has been a lot of interest in the Big Sky area, fantastic skiing (if you are lucky enough to have the coordination to keep from falling on your ass all the way down like me) and gorgeous views that are to die for. Over the years man has slowly wormed his way into this heavenly spot and residential areas are working themselves into the valleys and up into the mountains. Even back then, about 2005 or 2006 or so, houses were under construction ever closer to the wildlife that called this home. Yeah, that is just asking for trouble.
So here I was, water bottle, 2 books and no toilet. WTF did I think I was doing? Be brave, be brave…….I was an adult, the bears were more scared of me than I was of them……as if.
Often when in bear country I have well, yearned is probably the best word to describe it. I have yearned for one of those canned air horns that you hear at track meets and athletic events. I mean really, aren’t bears supposed to be afraid of loud noises? In most of my bear nightmares I am unable to scream or only a squeak comes out. My fear is that if a bear doesn’t high tail it out of the area my squeak won’t deter it in the least. It might think “mmm yum a little critter for my picnic basket” and try to eat me.
There are bear pepper sprays out there somewhere. I’m not sure what the spray range is, but I am pretty sure that in that situation, given my complete lack of coordination and extreme fear, I would end up taking the full force of the pepper stream in my face. Sigh. I am a klutz.
Now you might say “well why didn’t she stay at the top of the trail?”. Short answer….there was nowhere to sit. I have been fighting my back issues for more than 20 years and sitting on the ground is not an option unless I want to lose all feeling in my legs and well that just wouldn’t work should I encounter wildlife. And then there was the whole Face Your Fear issue. I was trying to be brave.
So I hiked down the trail, notice that I said down…..the opposite of down being up, the way back was gonna be a bitch. The first time we had hiked this trail, my ex our boys and I, we had followed the very well groomed trail to the bottom and beyond. My ex is one of those guys that sees a sign that says “stay out” and has to step over a fence to take a picture there. There wasn’t a sign saying to stop, there was one telling you that beyond that point the trail was not kept up and you were on your own. Sigh. During that trip I end up on my ass, perched on the crumbling edge of the trail crying in fear because I thought I was gonna fall. It took me 30 minutes, a lot of tears copious amounts of snot (I don’t cry pretty) and some very bad words, to inch my way to safety. I was convinced then that they would have to leave me to the bears and go get help.
With the previous trip in mind, I headed down the path. The path through this section of Ousel Falls isn’t really a long one by hiking standards, but it is winding and steep and not something somebody like me should really be hiking alone. But I was a good little wife and did what was necessary. I sipped the water only occasionally, I wasn’t gonna squat and pee on my shoes.
There is nothing like the beauty that you can find in Montana. Just the smell of the pines and the fresh mountain air will touch even the most hardened of travelers. I hiked down about a half a mile and stopped just to look around and absorb the beauty and of course to listen for any unwelcome visitors. They tell you to keep making noise so the bears will go the other way, since there was nobody there to talk loudly to….I talked to myself……loudly.
That was all fine and dandy until this couple with their dog came power walking through. Really people, when you see someone else on a narrow trail is it necessary to up your speed and wiz past them like they are standing still? Well, okay maybe by that time I was cowering in fear that the noise was, well, you know, a BEAR!.
That winding trail down the side of a mountain lush with greenery of all types doesn’t exactly give you a clear view of anything. The couple had brought their dog and obviously they were unable to read because the dog was bounding through the brush zig sagging across the trail, nary a leash in sight. It wasn’t until they were about 20 feet from me that I could see the couple and the dog. I am lucky I didn’t wet my pants. Of course I smiled and said hi, I do that everywhere by the way, I am not the eye averting shy type. They nodded and continued power walking at a high rate of speed down the trail. They may have looked at me a little oddly as they passed, might have been the loud talking to myself stuff.
I was tempted to up my pace but had a quick vision of rolling the rest of the way down the trail and opted to follow at a more leisurely pace. Some of my fear started to ease with the sight of the dog. I figured that either the dog or a bear would sense each other before I even had an inkling that there was a bear around and so I continued on a little lighter at heart and was able to enjoy the beauty and the views all around me. By the time I reached the bottom of the trail the couple was down by the water with the dog playing happily so I settled down on a boulder to read.
It was peaceful and beautiful beyond belief. Although my fear was still there it was pushed back and hiding behind the illusionary wall created by the presence of other people. They didn’t stay long. Perhaps the smell of wet dog?
Ignoring me totally they headed back up the trail, still power walking with their walking stick and their dog. Why hadn’t I thought of getting a walking stick? En garde bear! Yeah, that would work.
I was there for six hours. Six long wonderful yet horrible hours. We had agreed to meet at the top of the trail after six hours. He had estimated how long the job would take and how long to drive back to where I was at and so for about 4 hours I enjoyed the beauty and jumped at every rustle of leaves. A couple of other hikers came and went and I felt the fear rise and fall more than once. It had taken me about an hour to walk down so after about 4 or so hours and into the second book, I began to make my way up that steep ass trail. This was not, I’ll repeat that, NOT an easy task for me.
I was about five or six years post breast cancer and was just starting to realize there was something seriously wrong with me. The first few years I could easily blame my exhaustion on the surgeries, the chemo, the radiation, moving into a new house, moving again to a new state and another house and another and all the while working my butt off. My back was a known issue but the all over body pain and sensitivity was only now finally being diagnosed. I had fibromyalgia but refused to slow down, I was a wife, a mother and a business partner. I didn’t have TIME to stop doing everything for everybody.
So I plodded up the trail. It took forever. Each step was torture after about the first quarter mile. Sitting on a boulder when you have back issues, yeah, not a good idea. I had shooting pains down my right leg, I was exhausted and my legs trembled with the effort of walking up the steep trail. Halfway up I was half wishing a bear would get me, it would have ended the torture. A couple more ridiculously athletic people walked down past me cheerfully waving at my sweaty growly visage. I hated them.
It took everything out of me, but I made it to the top. Not a bear in sight. I thought I was going to die. There was something else not in sight. The truck. Well shit. I was afraid to attempt sitting on the ground lest I be forced to crawl my way into the truck when he finally showed up. So I paced….and then realized something else, I was okay. In pain yes, but I had made it through and I had faced my absolute worst fear.
I’m proud of that day. It wasn’t my smartest day, but I made it and faced a fear that has been dogging me for years. I had conquered the mountain, alone. My body hurt head to toe, but I was okay. He showed up late, asked how the day was, I looked him straight in the eye and said, “fine….Get me to a BATHROOM!”
Fog followed my every step today. Living in the desert there is rarely a day that involves the heavy grey mist that blocks your vision and forces you to slow your every move lest you run into something else. Today was no different as far as the desert surroundings go. The skies outside are clear and blue. The fog is inside my house, in my head.
It is called Fibro Fog and it is the bane of fibromyalgia sufferers everywhere. Everyone has those moments where you walk into a room and can’t remember what you walked in there for, but this is like that amplified. Every step I took felt like I was walking in molasses. Walking to the refrigerator found me standing there staring blankly in… What? Why was I there? This happened all day long. I overdid everything yesterday. I managed to get my creative project done and did a little bit of preparation for another project that I planned on starting today, but when today started it was all I could do to get the blog posted about my project from yesterday and I had already composed most of it last night.
My intentions for today was to start the mosaic pot to go inside the little painted chair pot holder from yesterday. I had already used my tile clippers and had separated them into little containers all ready to glue and grout for my little pottery piece. My brain couldn’t follow through. I could barely manage to make breakfast for myself. Wandering around my house to gather my supplies was torture. Room after room puzzling over why I was there, where were my supplies? What the HELL was I doing?
At first when I started having these foggy days I thought it was from the chemo I underwent for breast cancer. There is something I have heard referred to as chemo brain that happens to people that undergo chemo. The information obtained from the women’s center talked about so many possible side effects said that these all went away with time. Well hell, this never went away.
For years now I have struggled and sometimes feared that I had early onset Alzheimer’s or a brain tumor or something equally scary, really it is sometimes that bad. As a child wiz kid my memory was always something I took for granted. Phone numbers, addresses, trivial facts all stuck in my brain for YEARS. Suddenly I was struggling with everything. You know that phrase everyone likes to joke with “Of all the things I have lost I miss my mind the most” well that is me.
I know I am not alone. I belong to several fibromyalgia support groups online and am always looking into studies being done to find a cure. For the record, it is very hard to find a cure for something that they have not even discovered the cause of. Many people go through this and we all find ourselves wondering if we are doomed to go through this forever.
Daily pain is hard, any chronic condition is difficult for the person going through it. Careful use of pain medications can ease some of the pain but it never goes completely away for me. The chest pains from the costrochondritis is the worst pain ever, it feels like a heart attack and is mostly on the left side of my chest and my shoulder. Toss in the fibromyalgia all over your body pain and the pain meds are a vital part of keeping me relatively sane. The pain medications can make it hard to think sometimes and I am always conscious of the dangers of actually becoming addicted to them and there is controversy over the effectiveness in their use with fibromyalgia. Some studies even say that it may make fibro worse. Personally I find myself unable to think or function when my pain levels are high so I use the meds carefully and walk the tightrope between dependency and addiction.
The fog set in before I had even taken my meds so there was little doubt that I was going to have a foggy, foggy, fibro day from hell. Yesterday between coats of paint on my little painting project I sat and broke down ceramic tiles to smaller pieces to create a mosaic masterpiece from an old terra cotta pot. Normally I don’t eat first thing in the morning, some meds I am supposed to take on a daily basis before eating, others say take with food. Since my brain was not working well I decided it needed some fuel. It didn’t help.
I continued to struggle for a few hours but just could not get myself functional. Every task I started is still sitting waiting to be completed. The only thing I had any success with was taking a nap. My nap lasted 5 hours and I woke up exhausted all over again. The majority of people that have fibro also suffer from sleep disorders. I have a C-pap machine that I have to sleep with and just writing this is agony. My body is aching and I feel as if I have run a marathon….to make matters worse I keep falling asleep while writing this. Yeah, so much for that 5 hour nap. So this is me being human and accepting that for now at least this is my lot in life. The fog will eventually lift for a bit and I will get back on track.
Now it is time for me to give in and take another unwanted break in my quest for creativeness and sleep yet again. Even as I write this I am falling asleep sitting straight up. There is no quick fix for fibro fog you plod through and hope the following day will bring some clarity. Life is a Journey and someone else is holding the map.
For my third day of my 100 Day Challenge I wanted to do something involving color and my gardening together. When I was planting my cactus and succulent pot the other day I noticed that the majority of empty pots and containers for planting were either plain terra cotta pots or rather dull looking plastic pots in dark green or flat black……bleh…boring. I have several different plant stands outside made of wrought iron painted the typical black and one painted white…….again boring.
I love color. Bright BOLD colors My kitchen counter is black, as is my sink but my small appliances are bright and cheery and the revolving utensil stand is filled with spoons and spatulas made of all the colors of the rainbow. The bright splashes of color make my eyes happy. When I walk in my kitchen and start using my utensils I feel happiness. Color me happy!
I have a small wrought iron pot holder in a flat ugly black but it is in the shape of a cute little chair. Some of the paint had worn off and rust was poking it ugly head through the paint so I decided my boring terra cotta pot and flat black paint are going to go. I put on my gardening clothes (you know, the old t-shirt with holes and a pair of shorts) and got to work.
When I moved back to California a few years ago from Missouri, my wonderful mom had raided my step-father’s workshop and gathered together stuff she thought I might need in the house that I am buying from them. She packed in paint brushes, tools, screening materials, a saw, a rake, a shovel, well you get the idea. A little bit of this and a little bit of that. I remembered that there was a box that had several cans of spray paint out there somewhere in my garage. I braved the dark corners of the workbench and it’s resident black widow spiders and found a can of spray paint in a lovely aqua.
If you want something to last you have to put a little effort into it. That goes for life as well. I first scrubbed the dirt off the little chair and then spent some time sanding off the rust that had settled in. All of that takes time and all the while my mind is considering how life is a lot like that little rusty chair. In our fast paced society we are coming to expect instant gratification for too many things. We want our food NOW so we jump in a car and drive through a fast food establishment and sometimes don’t even take the time to sit down and eat there, we are in such a rush that we eat while we drive, always multi-tasking in our efforts to get what we want and get it now. The younger generation takes for granted their possessions and the technology that is handed over to them and are rarely found doing any kind of manual labor to achieve the things they want. It too easy to run out and buy something new and shiny (and usually plastic) to replace the old and rusty rather than to put some work into it and make the old into something new.
All this need for instant gratification results in a certain numbness to the journey. We hook ourselves up with wireless headsets so that we can make phone calls while we drive, we use our computers while we watch TV and more and more you see families in restaurants devoting their time to small electronic devices instead of talking to each other. As I continued to sand my little chair and then paint it I realized that I too had been spending far too much time glued to my computer instead of actually doing things.
The process of cleaning, sanding and painting the little chair took a bit of time as I also took time between coats of paint to soak and then scrub some small pots to use for the following day’s project. I felt happy to be doing this little project but as I sanded and painted I also became even more aware of the things that had been taken away from me by my body’s limitations. I was exhausted and the position I had to stand in to spray paint the chair was causing my back issues to kick in. Pain was radiating down both legs and my right foot was starting to go numb.
Fibromyalgia together with my herniated disks and my chest pains has kept me in bed on many beautiful days and sometimes the depression takes over and frustration sets in. I have no control over these things other than to take medications to hold the worst of the pain back and to avoid positions that cause extra pressure on my damaged back but I can do my damnedest to keep it from beating me. Creating something new from my old rusty pot holder made me feel GOOD emotionally. That feeling of accomplishment helps me to combat the feelings of helplessness that come with battling my health issues.
Quite frankly the activities of the day exhausted me to the point that when I was done with the painting of the little chair and I sat down to write this I fell asleep in my recliner with my laptop on my lap. Due to the disks in my back I can no longer sit at a desk or even sit comfortably in most chairs. People that suffer with fibromyalgia have problems sleeping, getting a “good night’s sleep” is a rare occasion for me so I am often exhausted even when I have just woken up. Too often in the past I have pushed myself to do whatever it took to accomplish different tasks and in the end all I did was hurt myself. I am now giving myself permission to be human and rest when I need to rest instead of trying to be Superwoman. I sometimes wonder if women are the ones that are more likely to have fibromyalgia than men because of our habit of rushing to take care of everyone and everything before taking care of ourselves. I am trying very hard to put my body’s needs ahead of what my habitual tendencies are so instead of pushing even harder to finish this blog post on the day that I did my little project I gave myself permission to SLEEP.
It is now the following day, I accomplished my creative task of making a beautiful little chair pot holder and will now work on the little pot that is going to go in it. If I get tired while doing it I will nap, I will eat or do whatever it takes to take care of myself. In some ways I am like a toddler just learning to take care of itself. All those years of worrying and carrying for children and the men of my life has left me bewildered on this whole taking care of myself thing. I am too used to pushing through the pain and thus harming my body in the long run. Baby steps, now it is time for ME.
The process of creating something beautiful gives me such Joy and Happiness, yes I capitalized those because they are so very important at this stage of my life. Sometimes it is the little things that sustain you and help you get through the tough stuff. Had I sat around the house and not done anything but surf the internet and watch videos about cute little cats and dogs I would have gotten through my day just focusing on my pain. By creating something I have something solid to hang on to, proof that I matter, that I can do something useful and it takes my focus away from the pain and exhaustion. I am still tired but now I have a reason for the exhaustion and I am happy.
I have what I like to call Princess and the Pea Syndrome.
Do you remember the story? It was a Hans Christian Andersen fairy tale in which a prince was in search of a princess to make his bride but was having a hard time finding a true princess. In the end a true princess was found by placing a single pea under 20 mattresses topped by 20 feather beds. After the princess slept on the mattresses she claimed that she had not slept a wink and was black and blue because of something in the bed.
I must be a princess. I cannot recall the last time I truly had what you might call a good night’s sleep. Tossing and turning, pains all over my body and being awake isn’t much better. Some days the lightest of touches feels like being poked on a fresh bruise. A well meaning hug can bring forth additional aches and more pain.
You see, I have fibromyalgia. Nobody is sure what causes it and there is no cure. I have lived with it for about 15 years now and have tried everything under the sun for relief. Personally I am of the opinion that undergoing chemo for breast cancer triggered it, but science has yet to determine definitively if that is true.
According to the Mayo Clinic symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. Since chemotherapy ravages the body seeking out those nasty little cancer cells and causes you to feel like your whole body is revolting, I blamed my exhaustion and body pains on that at first.
Quite frankly during the first year of dealing with my breast cancer I was not fortunate enough to be able to stop working. There was no time to stop and wonder what was normal and what wasn’t. My health insurance was through my employer and I would not have been able to afford the surgeries and treatments so I worked and blamed the pain and exhaustion on the chemo, then the radiation treatments. Working the graveyard shift at the Las Vegas Hilton, I went to doctor appointments, chemo then a few months later daily radiation treatments during the day and grabbed sleep here and there when I could. I was the Little Engine That Could, chugging away, going and going and going…….okay so I was a combination of the Little Engine and the Energizer Bunny at work and would totally collapse by the time I got home.
Fibromyalgia is one of the so called invisible diseases. You look just like everyone else on the outside but you have pain everywhere. 3 to 6 MILLION people in the US have this, no doubt you all know someone who is suffering from it……oh yeah…ME!
It actually took years before the doctors told me that I had fibromyalgia. Way back in 1990 I had a stabbing pain in my chest that had me terrified that I was having a heart attack. My boyfriend called the paramedics who determined that I did not appear to be having heart irregularities but the excruciating pain had my blood pressure at a terrifying 210 over 120. After months of periodic attacks and horrible pains in the left side of my chest they told me I had something called Costochondritis, a chronic inflammation of my chest wall. Again there is no cure.
Because of the costochondritis, which would come and go like an unwanted visiting relative, I was always looking for ways to rid myself of this pesky condition. It seemed to me that the chemo treatments, which were given to me through a port they installed in my chest, had aggravated and caused an increase in the chest pains.
Constochondritis is a total pain in my ass. Every time I get a new doctor or have a bad attack they have to rule out heart issues. I have had more EKG’s than I can count. Being a princess I also have very sensitive skin. Every EKG leaves me looking like I was attacked by a giant wild octopus with giant circles of reddened skin where each of the electrodes was attached to me. Yeah, I am a princess.
Since seeing a bunch of different doctors didn’t seem to be helping I started investigating chronic pain conditions on my own. About 4 years or so after my initial breast cancer diagnosis and following years of exhaustion and pain I came across an article about fibromyalgia that I took to my doctor. Since she had been treating me for the chronic chest pains and knew my history she performed another tortuous test to confirm that I did indeed have fibromyalgia. Finally I had some answers explaining the crippling exhaustion and constant pain. Answers but no cure.
On my good days I rush around trying to make up for the bad days by doing everything I couldn’t do before. I am like a crazy woman doing dishes, vacuuming, scrubbing toilets, whatever on one day and bed ridden the next. A simple shopping trip to the grocery store can sometimes put me in bed or stuck in my recliner for a few days. Ahhh, to really be a princess and have servants doing all that stuff for me. I’ve had to give up working, I could no longer tolerate the pain and be functional in a work environment. My current therapist suggested that I start a journal but that is soooo boring that I decided instead to reach out, through blogging, to others with fibro or people that know someone that has it.
So this is me, reaching out……..you are not alone and no you are not crazy. The pain is real and although currently there is no cure, there are legions of doctors, hospitals and clinics out there trying to find some answers and hopefully some day a cure.
Signing off for now, this is Princess Grynnie