Monthly Archives: September 2014
Don’t you just hate leaving messages that never get returned? I have been attempting to get someone in my neuro surgeon’s office to return my call for several weeks now. Not the surgeon himself mind you, just someone, anyone that can answer a question that I have.
My surgeon recommended a drug therapy to me that would increase the strength of my bones prior to me having a much needed surgery on my lower back. A recent bone scan revealed that I have osteoporosis in my lower back and left hip. This is a serious concern when facing back surgery due to the possibility that my bones might fragment during surgery. That does not sound like fun thank you very much. I would rather avoid having that happen.
When I met with the surgeon weeks ago (on a Saturday!) he recommended a newish drug that unfortunately is not always covered by insurance and even when it is covered is usually only partially covered. That figures. I would have to have a pretty big ladder to climb up to poverty level so anything that requires money out of my measly disability payment is kinda out of the question unless my soon to be ex-husband starts paying me the alimony the judge ordered (sigh anybody know any pro-bono attorneys?) yeah that is not gonna happen. But the surgeon said they have set up a special clinic within his office wherein they work with the drug company that produces this new drug and work it out so the patient doesn’t have to pay the uncovered part. Woot! Sign me up! He gave me the information on the drug to read up on and to talk to my regular doctor about.
Here is the kicker and why I am so annoyed. In the fine print it says to “tell your doctor if you have……” and then lists a long list of things. One of the things on there is radiation treatments. Well poop. What does that mean exactly? Does that mean that if I have had radiation treatments I cannot take this drug? Or does it mean that precautions need to be taken? I am a breast cancer survivor and had 7 weeks of radiation treatments in 2000. These are simple questions. That is all I need to know before I make the decisions I need to make.
My first call to ask these questions was on the Wednesday following my Saturday appointment. I managed to speak to a real live human and detailed my concerns. She said she didn’t know and then told me she would pass the message on to the nurse practitioner that ran the clinic within the surgeon’s office. Apparently she is only there on Tuesdays. Of course.
Three Tuesdays have now come and gone. I am going to be leaving on a grand adventure of a trip in 3 weeks that will have me out of the area for a couple of months. The surgeon was agreeable to putting off my surgery for a bit while I build up my bones but it sure would be nice if I could start working on that! After yet another Tuesday wherein I left yet another message on yet another voice mail…….well I am getting pretty darn disgusted with the whole process.
Complaining to someone’s boss is not something I like to do. I’ve never been good at standing up for myself, standing up for those that I love I do in an instant. I will be right there on the front lines of any controversy involving my loved ones and protecting them like a mother bear, but for myself I hate to rock the boat.
This time I think I must, but I don’t have to like it.
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 learned about this web site, Medium.com just yesterday. Within moments I discovered a blog by Matthew Trinetti with a title that grabbed me and gave me chills, like a premonition of something very important. The title? “There are 100 days left in 2014, What will you do with them?” I read this and knew this was something that I NEEDED to do for myself.
A few years ago, I suddenly turned around and discovered myself living alone for the very first time in MY ENTIRE LIFE! Since I am 50 something that is over half of a century. I went from being a child to being a 17 year old bride, then mother, then single parent with 3 kids, then 4 to take care of. A second marriage, more kids to take care of, pets, house, business, etcetera, etcetera, etcetera…..then POOF! Everything I had known up to that point was gone. No husband or kids to care for, no job, no house not even a car for a few years. Nothing.
I started over completely. Learning who I am, who I have become while I was so busy taking care of the wants and needs of everyone around me. What I learned is that I had no clear identity or sense of self any longer. My hopes and dreams had gotten lost long ago. I helped my first husband find his, I even tutored him in math as a 17 year old bride just so he could make it through his tech school training for the Air Force. I continued to help him with his homework as he pursued his dreams and I gave up mine. But that is another story.
Now this….this is for ME. I came across this challenge with not 100 days left in 2014, but a few less, that doesn’t matter, it is actually a very good thing. I am planning such a grand adventure over the next few months that this timing will cover me from Sunny Southern California to Georgia and back again.
Dreams can be rediscovered, new pathways found and new adventures embarked upon. My 100 Day Challenge to myself is to find or do something creative, whether it be an art project, a photography session or even just taking some time to tap into my creativity and to blog about each day’s adventure.
I began the challenge on September 26, 2014 but am only just now sitting down to record my challenge activities. Yes, there was more than one thing! I felt inspired. From a very young age I loved color and everything art related. I also was an avid reader and even wrote a bit for my high school newspaper. My dreams covered everything from becoming a painter, a writer, a scientist and a computer programmer (I am a nerdette). Over the past few years as I have learned all over again about taking care of just me, I have begun gardening. I have always had a brown thumb so this is indeed a challenge since I live in the very harsh California desert. Upwards of 110 degrees Fahrenheit during the summer days and freezing during winter nights.
So for my first day of my challenge I created through my gardening. I have been procrastinating in putting together a desert planter of some succulents and small cactus plants. This isn’t quite as easy as it sounds but with the careful use of my trusty needle nosed pliers I kept myself from turning into a porcupine.
The feeling of accomplishment and JOY to be doing something that was for me and only me was such a rush! I’m not used to doing things that are for just me. It was always for someone else and everything that I did for myself made me feel guilty, like somehow I was less deserving than everyone else. Now is my time and boy does it feel good.
When I finished the succulent planter I was sorely tempted to keep going to dive into the next planting project. This is a trap that my mind tries to toss my body into. As someone that has been suffering from fibromyalgia for 14 plus years, I have a tendency to overdo things. Some of the things that are taken for granted by most people can seem like insurmountable obstacles to me. Grocery trips, simple household tasks such as vacuuming or laundry or even simple errands can lead to flare ups and a couple of days in bed.
Learning to accept myself as I am with no apologies is another thing I am working on. I will no longer apologize for my body’s failings.
My worktable is scattered with various empty pots, vases and gardening tools. My first inclination was to pick up a couple of the empty containers and to repot some of my other house plants but I gave myself permission to be human and try that new thing called SLEEP. When you have fibromyalgia sleep can be very elusive and often not in the least restorative.
After about 5 hours of sleep I found myself outside in my rose garden gathering up fragrant blooms and grinning like a fool. My joy was overflowing.
Here is the result of the first 2 days of my 100 day challenge, 2 small steps taken with Joy and Gratitude for this next chapter of my life.
What are you going to do with your next 100 days? See you tomorrow my friends!
Way back in 1994, I was told by a very nice doctor at a local Community Hospital, that I had three herniated disks in my back and would need surgery to correct the problem. Being a single mother and not a big fan of doctors and hospitals in general, I thanked him and walked out the door. I have been dodging the bullet ever since.
The problem with dodging bullets when it comes to your health is that one missed step puts you right back in the path of the bullet. You would think that anybody that managed to dodge bullets for nearly 20 years would be a wiz on the dance floor but hey, that would be silly given the condition of my back.
Back then I had been expecting the diagnosis since this wasn’t my first experience with a herniated disk. The first time around I had worked hard to get medical insurance and had a wonderful doctor named Disney who did magical work. 😀 That time around it was nearly a year of agony wiped out nearly instantly, but it had only worked for about 3 years. One disk is not nearly as complicated as 3 so I soldiered on and continued to dodge the bullet.
This is something that women tend to do in their lives. They put their health on the back burner of life and rush around caring for their husbands, children, jobs, houses, pets…..well just everything but themselves.
Over the years I have had quite a few therapists that have helped me deal with all the issues life keeps throwing at me. One of them recommended a book called “When I say No, I feel Guilty”. I read the book, briefly tried to say no, then continued running around trying to make everybody else’s life easier and more comfortable while continuing to dodge those health bullets of my own.
I have had a lot of health bullets to dodge. A LOT. In my opinion my share of health issues seems to be abnormally large. Breast Cancer, Fibromyalgia, Costochondritis, Arthritis, Herniated disks, etcetera, etcetera. When you are dancing around trying to dodge that many bullets, you are bound to make a misstep and take one, especially if you have a bad knee to go with the bad back…..makes taking steps in general a little tricky.
All this dancing about dodging these bullets is tiring. Finally, I missed a step. Although over the years I have had more than one rough patch dealing with my back I always managed to push it back and frankly some of the time it was just plain orneriness that kept me from succumbing to the pain. I’ve learned to not stand too long in one position (like at the sink doing dishes) or to use the vacuum for any extended periods. Quite frankly there are a lot of things that must be avoided to dodge back bullets and after 20 years I am an expert dodger……..kinda.
It happened innocently enough, a friend came down from Utah to visit me on his vacation and we spent a day playing tourist at Olvera Street in Los Angeles. He is a young guy and like many young guys he overcompensates with his vehicle. He has what I call a Monster Truck, one of those 4 wheel drive trucks that is jacked up to the sky and is impossibly difficult to get into and out of for us less than limber oldsters. We drove and bounced from my place in the desert to Los Angeles and I felt the first twinges of a less than happy back. We parked the Monster in the parking lot at Union Station and I stared down at the ground so very far away and jumped. Holy crap, I stuck the landing and jolted both my back and my knee. Then we proceeded to walk from there to Olvera Street and Chinatown for lunch………and then we walked back.
By the time we reached Monster at the end of the day, I was on my 3rd dose of the heavy narcotics that my doctor prescribes for my various ailments. Refusal to take my meds for pain is a common thing with me. I fear becoming “addicted” rather than depending on them for relief from the otherwise crippling pain. So for me to take 3 of them before the day is done is quite unusual.
Suffering from fibromyalgia as well has taught me that there are good days and bad days and that I, as well as many others with fibro, have a tendency to over do things when I have the rare good day. This had started not as a good day, but not terrible either. But the walking, oh all that walking………not the smartest thing I have done. I don’t want to be sick and I don’t want to have a 50 something body that feels like it is 80, but I do.
When I overdo my day (like going grocery shopping) I know that I will most likely have to spend the following day in my recliner or in bed. It is what it is. Since my friend was leaving the following day to head back up to Northern Utah, I powered my way through his visit and laughed and had fun all the while saying to myself “Oh Shit!” really, it was like a mantra in my head……….Oh shit, shit, shit………walk, walk………..shit, shit, shit.
Four days after he left I was still in bed. Every step was agony, sitting in my recliner resulted in numbness down both legs and sitting on the toilet practically made me cry. That bullet finally caught up with me.
It has now been a few months since the bullet hit. I have been x-rayed and scanned, both an MRI and a bone scan. I have a very nice surgeon who is proposing that I undergo a laminectomy on my back but not before I undergo a new therapy for strengthening my bones. You see the bone scan revealed that while I was dodging the other health bullets, my bones were busy disintegrating. Not all of them, just my left hip and lower spine (eye roll).
As a last hurrah before I begin treatment on my disintegrating bones in January, I am going to travel across the country, dodging more bullets and making more memories. Because I am a woman and that’s what we do, we soldier on and dodge the bullets life shoots at us.
The Sisterhood of the World of Bloggers Award
Sisterhood of the World Bloggers Award
I would like to thank Josefine for nominating me for the sisterhood of the world bloggers award.
1. Thank the blogger who nominated you, linking back to their site.
2. Put the award logo on your blog.
3. Answer the ten questions they have set you.
4. Make up ten new questions for your nominees to answer.
5. Nominate ten people.
My answers to Josefine’s questions:
1. Your house is burning, you have 60 seconds to get out of the house before it collapses. What do you grab and take with you?
Oh this is an easy one! I would grab Frosty my beloved dog, because nothing is as precious as a life. If I was able to scoop up my laptop at the same time I would grab that too so I could communicate with my peeps and describe the drama of the whole thing.
2. What is your favorite place in this universe? Why?
I pondered this question for a bit because I have been to so many places throughout my life but the one place that has always resonated deep inside me is the Valley of the Temples on the island of Oahu in Hawaii. I lived in Hawaii for awhile in the late 70’s early 80’s time period and it never failed to bring a deep feeling of peace and joy to me.
3. If you could give one piece of advice to the human race, what would it be?
Love each other. Release the hate you hang on to and let yourself love.
4. Would you want to live forever, given the chance? Why?
No, I believe there is something bigger and better after this life. This life is all one big lesson. Learn the lesson and you will find joy and happiness in the next life.
5. What is your favorite resource for personal development? Why?
This one kind of made me giggle but it is actually true……O magazine!!! Putting aside the fashion and material things inside, Oprah has many inspirational and motivational tips with everything from meditation and yoga to herbal remedies and health tips. It was actually Oprah’s old TV show (in 1985) that gave me the courage to step out of my abusive marriage and start life over. I will forever be grateful to her for that.
6. If you could eradicate one ‘problem’ of/from the human race, what would it be and why?
Intolerance and Hate. Putting aside the physical issues resulting from the terrible things we have done to our planet that have resulted in pollution and destruction of natural resources, I think that the anger and hatred in this world will lead to its ultimate destruction. It saddens me to see the violence and destruction that comes with all this hatred.
7. Have you told the 5 most important people in your life that you love them today? If your answer is no, you better go do it now!
No I haven’t, but now that you mention it………….(toddles off to locate her missing cell phone)
8. What is something that you have done, that required the most courage (yet) in your life?
Moved from California to Las Vegas to restart my life with only the money in my pocket and faith. It was a very difficult time in my life and it required a lot of courage and a whole lot of Creative Visualization. (look it up, you will be glad you did)
9. Who are you?
I am flawed but I am honest and I am true to myself. I don’t believe that lies get you anywhere and take care to live my life so that when I close my eyes each night I will feel no shame for any actions I have taken each day. That is all you really have when it is said and done, the possessions mean nothing because you won’t be taking them with you to your next life. You have only YOU.
10. What is the craziest thing you have ever done?
Oh jeez…..I plead the 5th. I choose to not answer this question on the grounds that it may incriminate me…(and embarrass my children)
Ok so now that I have confessed to my deep dark secrets, it’s time for my nominations and questions so that other people can do the same!
Here are MY questions for my nominations, most aren’t too deep but they are fun and I believe that every one needs some fun and laughter in their lives. Muah ha ha ha ha. Since I am new to blogging it may take me a bit to find others to nominate, but I will post them as I find ’em. 😀
1. Dogs or Cats? Or does a more exotic pet appeal to you?
2. What is your favorite (we aren’t counting calories here) dessert? Describe the ideal setting for you to enjoy it.
3. You are the leading lady in a new movie, who would be your first choice for leading man? Second choice?
4. What is your favorite type of romantic fiction, a novel, television or a movie?
5. Do you still believe in love and have you found it?
6. What is your favorite color and where in your life do you use it the most?
7. How often do you cook? Really, no cheating here, do you cook, share the cooking, or are you a fast food junkie?
8. Where would you go on your dream vacation and who would go with you? (If you have kids pretend the dream vacation either comes with a Nanny to stay at home with them or bring them with you, it is YOUR dream)
9. What makes you happiest?
10. Do you tweet? (I have twitter but I can never say anything short enough to put on there!)
Here are the links to my nominations. Have fun!
Layered Pages http://about.me/layeredpages
Sarah Kennedy http://sarahkennedybooks.com/
Redmon Woods http://redmonwoods.com/
The Billy Tea https://wordpress.com/read/blog/id/42615304/
Shamelessly Shannon https://wordpress.com/read/blog/id/66602431/
Brittany Likes Nachos https://wordpress.com/read/blog/id/71693233/
The Green Pants https://wordpress.com/read/blog/id/73431409/
A Journey of Acceptance with a Chronic Disease https://wordpress.com/read/blog/id/62268022/
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
I am an Over Thinker.
I wonder if there is an Over Thinkers Anonymous? You know what I mean. You have the best intentions when you get out of bed and decide what you are going to do with your day so you start with the basics. Should I wear the blue jeans or the print flowy skirt that makes my ankles look slim? If I wear the jeans will the extra serving of ice cream at the pharmacy show up as a poofed out belly? Maybe I should wear the skirt….. but didn’t I wear that the other day, I wonder if it is clean. Better wear the capri pants, the cut hides the belly but still makes the ankles look slim (don’t ask me why, maybe it is because that is the only part of me that IS slim).
The same thing happened this week with blogging. I was overthinking everything. What do you mean change the name? I don’t want to change the name…..is the name bad?…..are the first names always bad?……should I leave out the part about the map? All these random thoughts popping in and out of my head as I also was struggling with other “issues” and rethinking my introduction.
Over thinking things is a life long struggle for me. A wiz at school as a child I still agonized over everything, absolutely EVERYTHING. I worried about what the other kids at school thought of me to the point that I barely spoke with the fear of being thought stupid. Yeah, my IQ was determined at a very young age to be exceptional (160) and I was placed in what they called at the time Mentally Gifted Minors or MGM. Nobody really explained this to me but I suddenly found myself in an office with a group of adults reciting numbers to me and asking me to repeat them forwards and backwards, I believe I was 9. Aside from that little snippet of memory not a lot is clear. But I do remember being painfully shy and everything I did I would think about over and over again. My schoolwork was meticulous and I always got A’s. As a teenager and young adult I was so afraid of doing something wrong I would choose to not do things due to my fear of making mistakes and drawing attention to myself. Getting good grades was a given but the agonizing that went into the work is something that I have never shared.
Several of the jobs I have had made me agonize over details that nobody cared about but me. To my supervisors it must have seemed like I was slow, I was so afraid of making mistakes that I overthought things and started over to get things perfectly done. Perfection takes time. Not all jobs want perfection, they just want the job done.
Life is not about perfection and none of us is perfect. Overthinking about something makes us lose sight of the actual goal sometimes. My goal is to learn to put the racing thoughts and observations about life that I have accumulated in my 50 plus years, into words for others to laugh at, cry over and to share in.
I once had a therapist (yeah I have had more than a few of those) that told me to take the word SHOULD out of my vocabulary. I should, he should, they should, all of that gone. Shoulds are not real and don’t count in real life. There is only do and do not………..wait, didn’t a little green guy say that? Oh well, so there is only the reality of what you actually do. Thinking is not doing. Thinking about the things I want to say and share is not actually saying or sharing and thinking doesn’t count as blogging until my ass is in my chair and I am typing.
This is me, Grynnie, typing. May the force also be with you.
Life is freaking scary when you have lived with other people your entire life and suddenly you find yourself ALONE.
When I was a child it was a full house, 5 kids with me as the oldest and my parents. From that time on I have always been living with someone. First my family, then a husband and children, divorce (another scary thing) and then it was me and my children. Another marriage, blended family then POOF! The kids are all grown and now another divorce and I am alone.
The funny thing is that there are so many other people out there like me that in our individual struggles with this new single condition we are the same. Many of us are fighting the same battles and are reaching out to others for help in dealing with life and the echoing emptiness of our homes.
But there is something else that I realized after many months of being alone. I now have FREEDOM. If I want to soak in the bathtub and read a good book there is nobody pounding on the door demanding my time and attention. For years everybody else came first before I could do anything for myself. The demands of being a wife and mother, dealing with breast cancer and juggling bills, a business, doctors, school meetings for the kids, etc., etc., etc.
Somewhere along the line I lost myself. Really lost myself. The dreams from when I was younger of being a writer, a painter, a computer programmer…….yeah I had a lot of interests when I was younger, all those dreams had disappeared. My high school teachers thought I should be all of the above (depending on which teacher you were talking to) but I gave up my dreams to support my first husband in his dreams and raise kids. Then the divorce and years of struggles, stresses, laughter and tears. A roller coaster of a life that sometimes had my therapists laughing and me crying.
Now I have hit Ctrl, Alt, Del. on my life and am rebooting the life computer. Everything is new and shiny and bright. Well, okay, so not everything but then life is what you make of it and I want to LIVE. I know I am not alone in this, there are so many other people out there just like me, starting over at 50. Maybe my experiences and views will help somebody even if it is just to make them laugh and brighten their day.
There is no map for this journey but it is all such a grand adventure that I am ready to get started. For years I have been gathering friends from all over the world via the internet and through real life meetings. Somewhere along the way I picked up the nickname of Grynnie (pronounced like grinny) and it is sticking rather well. So I am starting this new life as Grynnie and am off to seek adventure and shiny things.
Through this blog I hope to connect with others to share experiences, hopes and fears and laughter. Laughter is the glue that holds me together most of the time and brings brightness to gloomy days.
I am Grynnie, come with me on my journey.