I’m a sleep deprived antique dealer with fibromyalgia, arthritis, diabetes and more. I love my wonderful and supportive husband, I love to read good books, I love music and laughter. I sing loud in the car. I play online poker (play money). I fight pain. Still learning lessons that life teaches. Trying hard to make it through each day with a joyful heart. Some days are good, some are not. Each day is a gift, regardless.
“The Nocturnal Laundress”. This is a name I gave myself during a particularly long night of insomnia, months ago, where I found myself doing laundry…all night long. I figured, well, I can’t sleep, I might as well get something accomplished. Thus, the name. I will get into the subject of my chronic insomnia soon. Because I’m sure I’ll have lots of time in the wee hours of the morning to delve into it, no doubt about that. ~ Julie
My Laundry List of Ailments
- fibromyalgia – diagnosed 35 yrs ago
- Graves hyperthyroidism – treated with radioactive iodine 36+ yrs ago
- endometriosis with ovarian cysts – diagnosed 36+ yrs ago
- osteoarthritis – diagnosed 22 yrs. ago
- severe chronic plantar fasciitis & tendinitis – diagnosed 24+ yrs ago
- carpal tunnel syndrome – diagnosed 29+ yrs ago
- high blood pressure – diagnosed 35+ yrs ago
- anxiety & depression – since childhood
- spinal hemangioma tumor – diagnosed 9 yrs. ago
- herniated disc L3-4
- tear in labrum of hip joint
- borderline lupus & RA with high inflammation – 32+ yrs ago
- GERD – since ??
- vision problems including vitreous degeneration – since 2nd grade
- chronic insomnia – since childhood
- diabetes – diagnosed 14 yrs ago
- RA – diagnosed 2 yrs ago
HOW IT ALL STARTED……
The following are the first several posts from when I first started this blog to give my readers an idea of where I’ve come from. My journey started over 35 years ago, and so there’s alot to cover. I apologize for the length of these posts but I tried to compact my experiences as much as possible. I left a whole lot out. But wanted you to understand where I have been. Thanks for taking the time. xoxo
I am starting this blog for myself. It’s cheaper than therapy and I don’t have to put on my make-up, do my hair or even get dressed to come and write. I’ve alienated so many people by the things I’ve posted on Facebook about my health, and about my feelings about my health…. I decided maybe a blog would be a better outlet. If perhaps someone finds something here that they can relate to, or something they can laugh at or otherwise find interesting, so be it. But this time and space is ultimately, for me.
A little about myself….I am 62 years old and I’m married to a wonderful man. We’ve been together for over 35 years. Long before the Pain Monster came and interrupted our lives. When we first started out, we were both still pretty young and pretty wild. We partied hard, loved passionately, and enjoyed life together as often as we could.
I had health issues before I met my husband. I had been diagnosed with endometriosis and had struggled for years with agonizing pain, treated with Depo-provera and still had problems from that. But eventually, it settled down to manageable levels of pain and I just tried to forget about it.
Hubby drove a truck cross-country, he hauled furniture for a living, so sometimes he would be gone for weeks at a time. I lived in our small apartment in a very small town that had probably less than 100 people in it. Yet it had five bars and lots of party people. We were within walking distance to most of the bars. And we frequented them almost daily when he was home, and I frequented them daily when he was not home. I would not say we were “alcoholics” but our drinking was really getting out of control and it was pretty much all we lived for at that time. We were young and stupid. I was coming out of a bad marriage at that time and hubby liked to imbibe during his days off, if for no other reason than he had nothing better to do.
Once in awhile I would get bored sitting around in the apartment hubby & I shared, and so I would take a trip with him. This was frowned upon by the trucking company he worked for, but he got me clearance to ride along, so I packed a bag once in awhile and headed out on the open road in a rickety old Mack truck with my honey.
One time, we took a long trip down to Florida, where I contracted a terrible flu bug that really laid me out. I had a high fever, and was sicker than a dog for several days. Unfortunately there was nothing to do but continue on the trip until the trucking company said he could head home. I rested as much as possible but was incredibly miserable. We had been to North Carolina and Chicago on that same trip before I got ill.
I should mention that I was taking anti-thyroid treatment for my Graves hyperthyroidism at the time of the trip….but never considered the ultimately life-changing bad timing of that trip until I returned home three weeks later, with terrible spasming in my back and pain all over my body. Little did I realize but the doctor had sent me a letter in the mail (that I did not see until three weeks later when we returned from the trip) that I should immediately stop taking the anti-thyroid medication. I believe that my continued use of the medication in addition to the extreme case of the flu altered my life forever. I should also mention that I did call the doctor’s office to report my extreme spasming symptoms and the receptionist did not equate the symptoms with my continued use of the anti-thyroid meds and told me to take Tylenol.
Once we returned home, after seeing the letter, I immediately quit taking the anti-thyroid meds, yet my spasming did not stop. Previous to the trip I had been given radioactive iodine to dissolve my thyroid gland which is a standard treatment used for Graves disease. I did not worry too much about it and at that point in my life, figured “easy peazy”….swallow a radioactive pill, thyroid problem all gone, continue on with my life…. little did I know what I was in for.
In the days that followed, beginning the day we returned to our little apartment, I continued to experience extreme spasming in my back, neck and shoulders. At first we just assumed that it was due to the long trip and my severe case of the flu, coupled with the three weeks of being on anti-thyroid drugs that I should not have been taking for that length of time. Eventually, I called a doctor and made an appointment….which began a 30 year trek of trying to find answers, cures, relief, validation, understanding, and compassion.
To make a very long, painful story shorter….it took me two years of seeking help before I finally found a doctor who figured the mystery of my life out. He came to my bedside in the hospital and said to me “I think I know what you have. It’s called Fibromyalgia”. I will never forget the sense of relief and validation I felt at that moment. After two years of being patronized, shunned, being called a liar to my face, told I was drug-seeking, told I was making it up, told I was looking for attention, told I was bored and depressed…..someone finally recognized what it was that was making my entire body feel like a gigantic black and blue bruise, 24 hours a day. I could have jumped for joy. Until I learned that there was no cure, only drug treatment available.
During those first two years, since I became extremely depressed due to no one being able to figure out what was wrong with me, and putting the cart before the horse and saying I was having pain because I was depressed….they put me in psych wards to try and medicate me to the point of shutting up about my physical pain, basically. I would spend three weeks in a house of horrors, making ceramic ashtrays and walking around in a drug-induced haze…then be released only to find that my pain was still there and I was still yet undiagnosed….a mystery to the myriad of doctors. I lived in a halfway house (for ex-mental patients) for several months before I ended up in the hospital again with severe pain, and that’s when they finally got it right.
FIBROMYALGIA. It was a blessing and a curse. The blessing was that now we knew what I had. The curse was that now we knew what I had. At that point in time (back around early 1980’s), very little was known about fibromyalgia. They were just beginning to recognize that it may be a valid syndrome (they called it “syndrome” rather than “disease” back then). With a tremendous stroke of luck, I was referred to a rheumatologist at the U of I College of Medicine by the name of Dr. Alfonse Masi, a world-renowned research doctor who specialized in arthritis and fibromyalgia. This gentle, kind man, from the moment we first met, became my champion. He not only believed me when I told him about my pain, but he was sympathetic, compassionate, and tried his hardest to offer tips of how to manage the pain. His genuine care and compassion nearly brought me to my knees after all the crap I endured from countless arrogant moron doctors who treated me so badly. I was so grateful to finally have a doctor who understood me. I saw him as a grateful patient for nearly 25 years until he retired from seeing patients. Although he was never able to truly offer me anything to cure my pain, his kindness will never be forgotten.
We never did determine if the overuse of the anti-thyroid meds, or the bad case of the flu contributed to the development of my fibromyalgia, but I believe they may have. That made three separate, specific diagnoses of autoimmune diseases that I had contracted in less than 5 years. To be continued….
FIRST DAY ~ PART TWO
Over the years after the diagnosis, even though I was finally at peace, knowing that I had a legitimate illness and it was not “all in my head” as I had been told repeatedly by doctors, therapists, etc….it was still a rough time. I was on a search to learn how to live with my disease. At that time, back in the early 1980’s, even though fibromyalgia had growing credibility, it was still a very controversial topic among medical professionals. I encountered so many doctors that would give me a sarcastic smirk or a smug rolling of the eyes when I told them I had fibromyalgia. Even though I still felt belittled, ridiculed, and like a neurotic woman with hypochondria, I knew that what I had was real and the pain was intense. I tried to find a regular doctor besides my rheumatologist, for the usual garden-variety medical needs that everyone has from time to time, but I wanted one that understood fibro and also one that believed in it and knew it was a valid disease.
Larry and I learned to live a different lifestyle from the one we had been living before the diagnosis. We moved from Champaign, IL back up near my home town to Peoria, IL and got an apartment there. I was put on some medicine and tried to live as normally as possible, dealing with the pain as best I could. We moved a few more times and finally found a house to buy. Shortly thereafter, he was hired by a nationally known trucking company, to drive local runs instead of cross country runs. We were thrilled….the job paid much better money than he had been making as an owner-operator and he would be home every night instead of only on weekends. It opened up a whole new life for us. We then decided after being together for 10 years, it was time to get married.
We became man and wife on June 5, 1992, in a small ceremony at a tiny wedding chapel out in the country in Groveland, IL. It was perfect.
My pain was still really bad and there was a time when I ended up in bed for an entire year. I was struggling with severe pain and no one would prescribe anything more than anti-depressants or mild pain meds for a short time. It was as if I was being consumed alive by something within me and I was unable to fight it. I was getting the run-around from doctors and again I found that I was not being taken seriously. They did not adequately treat my pain and therefore I ended up bedridden for that year. I only got out of bed to use the bathroom, shower occasionally and eat. Larry had to do all the housework, laundry, cook meals and continue to work at his job. Meanwhile all I had to occupy my mind was television (which I hated) and books (which I loved). But the isolation and the monotony and the pain nearly drove me over the edge. Thoughts of suicide entered my mind on a daily basis. I never expected that anything would change and I was doomed to lay in a bed for the rest of my life in excruciating pain.
Somehow I got in touch with a physical therapist via telephone. To this day I do not remember how we got connected, but he became a lifeline. He gently persuaded me to just “try” to make an attempt to slowly leave my bed and walk through the house a few times a day. Then try to get dressed and sit in my recliner for an hour. Then maybe try a few very gentle stretching exercises. I trusted him….so I did what he asked. Before long, the spell was broken and I was able to get back into the flow of life again. Even though my pain was still strong, I was no longer so afraid of it and realized that I actually felt better when I was moving rather than laying in bed 24 hours a day. I felt like I had been set free.
After I finally got myself out of my bedridden state, we settled in to our lives, and I lived with the fluctuations of the intensity of the pain from day to day. I tried all sorts of different things to reduce my pain levels. I went to arthritis warm-water exercise classes, I walked a walking trail behind one of the hospitals in town, I even did step-aerobics for a time and ended up losing 20 lbs. My pain was becoming a little more manageable, or perhaps I was just only getting used to it. By that time I had been in pain for over 10 years.
AND THEN, LIFE BEYOND DIAGNOSIS….
After we got married, and Larry started his new job with the trucking company, things began to even out for us in many ways.
I was still learning how to function with this constant companion of chronic pain….trying to see how much I could do, how far I could push myself, how much I could “get away with” before it would knock me down for the count. I was beginning to accept this familiar, but annoying cloak of pain, and trying to just live my life as best I could. Many times I would do too much, and throw myself into a bad flare up. Then I would get mad, being literally stopped in my tracks and having to stop everything and….”rest”.
I grew to hate that word. “Resting” did not have a good connotation to me. Resting for me was a kind of invisible “prison”….or a punishment, like a “time out” for a child….something I had to do against my will, because I came to realize that pain was something you had to obey. There was no choice in the matter. If I went too far beyond my limit, I paid the price, and the price was even more pain than usual, and that usually meant days or even weeks or months of “rest”.
I started developing resentment in my heart against my own body. My body was my own worst enemy. I began to hate it. I also began to slowly start to rebel against it’s new limits, and the way it controlled my life.
Larry was thrilled with his new job, so happy to be able to come home after a long workday, have a home-cooked meal, be at home, watch TV before bed….like normal people do. He was so happy to be able to sleep in his own bed, instead of the bunk in his truck or in a motel somewhere far from home like he had with his old job.
He was always sympathetic with me when he saw I was struggling with the pain and understood how miserable I was. He never treated me with anything other than compassion and concern. He knew me before the Pain Monster hit, he knew how much it had affected me, how much it had changed my life and my attitude. He knew I was angry, but didn’t know how to help me, except by being supportive and helpful in any way he could. He was my husband, but also my dearest friend. He let me know that he loved me no matter what. And that meant the world to me.
I had developed an interest in antiques during this time. I had always loved old things but I really started getting obsessed with going to outdoor antique markets, antique shows and also shops and antique malls, whenever I felt like I could handle it physically. My feet always seemed to really hurt a lot after these day long trips, with many hours of walking, but I just chalked the foot pain up to fibro, which I had been told by the doctors that it would not do any damage to my body even though it felt like it was. I decided my feet would just have to put up with my 5-7 hour hikes through the markets as I searched for prized antiques.
I remember one day we went to an outdoor antique market in Colchester, Illinois….it was a wonderful place, a beautiful day out in a wooded area with all sorts of antique dealer spaces set up. Larry & I walked around, perusing the wonderful old pieces and I spotted a quilt hanging on a line. I checked the tag and it was priced quite low. I told Larry, “you know….I am sure this quilt is worth more than this marked price. If I were an antique dealer, I know I could make a lot more money on this quilt.” He looked at me and said, “well, have you ever given any thought to actually renting a spot at the local antique mall and giving selling a try?” I laughed and said, “Do you really think I could?”…..and he looked into my eyes and said, “I think you could do it. I think you should buy this quilt and then go rent a space in a shop or mall and start selling antiques.” And I looked at him, smiled a big smile, and said….”I think I’m gonna do it!!” Then I promptly walked over to the dealer, told her I would like to purchase the quilt, I paid her the money, and off we went, with a quilt under my arm and a new dream in my heart, and my mind racing with new possibilities. I never gave my illness or pain a second thought. I really wanted to do this thing, and nothing was going to stop me. That was in 1996.
DISCOVERING A DREAM…
By 1997, I had rented a booth in a small antique shop in a small town on the square. I invited my mother to join me in this new endeavor, as she also had an interest in buying things at garage sales and auctions, then turning around and selling them for a small profit. We nervously began buying what we could find, hoping that we would at least sell a few things, even if it was only for a few dollars more than we paid….it was all just in fun, after all.
Our first month we made over $400! We were absolutely ecstatic and were so proud. All of our antique-hunting was paying off! That first check only fueled the fire in me. I was off like a rocket after that. I got my aching body up at the crack of dawn every weekend, driving around in search of garage sales, trying to beat out all the other antique dealers in town. It never failed, if I arrived at a garage sale at 6am, another dealer had already beat me there by 10 minutes and was walking out with his/her arms laden with all the “good stuff”. It was frustrating at times, but other times I would find such amazing things at a fraction of the price I could ask….I was absolutely hooked, and so “into it”, I almost forgot about how bad my body was hurting.
By the time I’d been out for several hours in the early spring and summer mornings, and be pulling into the driveway with the car loaded to the gills with stuff….I would start to become aware of the pain. But of course, I had to bring everything into the house, show Larry what I’d found, then record my finds in my inventory book and put price tags on each item. Eventually, the adrenalin rush would begin to abate, and I would suddenly realize the stunning amount of pain that was coursing through my body after repeatedly getting in and out of the car for 3+ hours, and running up and down people’s driveways, bending and reaching for their cast-offs. I would finally slow down and come to a screeching halt, and find my way to the couch or bed for a rest.
Larry was very supportive of my new-found passion, but he always would gently remind me not to overdo it….he could see what I could not….that I was completely ignoring the pain signals my body was giving me and totally disregarding common sense, just going on with what I wanted to do and to hell with the pain. When he would suggest that I sit down for a bit before pricing items or running back and forth from the car with my finds….I would say, Okay sure, in just a minute….I just want to get this done first. And I would keep pushing. And pushing.
My mom was enjoying the ride too. It was fun for both of us to see our little 25 cent purchases from someone’s garage turn into a $5 sale. It was a special time that we enjoyed together. But I was the one who was really flying high. I never realized that my little garage sale hunts would eventually turn into something much bigger.
After awhile, I decided to move to the shop a few doors down. It was “THE” spot to be if you were into selling antiques. Specializing in primitive country antiques, this shop was such a magical place to me. I was honored to be asked to join them, so when I had the opportunity to move into a rare open space, I jumped at the chance. From then, my antique passion really began to take off.
I ended up being at that wonderful shop for many years, and it was very lucrative. Much more so than my humble beginnings when I purchased things at garage sales for a few cents. I began to find better things, buying on eBay and we began going to antique markets and malls where there where many dealers selling things that I would just drool over. Sometimes, if I was lucky, I could find a piece or two for below market value, and snatch it up. Then I’d take it to my booth at the shop and mark it up. Much to my surprise, my things started selling like crazy. Evidently the things that I loved, others loved as well, and they were willing to pay my price. Next thing I knew, I found another outlet for my passion of selling antiques.
eBay!! Some friends and I decided we wanted to try our hand at selling antiques online. Although it was scary as hell, we were tutored by another friend who had been selling on eBay for awhile. We took notes, bought cameras, and began! I was so incredibly nervous. I’ll never forget the first thing I sold was an old advertising tin for baking powder. It turned out to be a very, very desirable tin and ended up selling for over $100. I panicked! OMG! I still have to laugh at myself because I was so freaked out about selling this item for so much money, that I packed the thing in a box way too big, and even though I knew it was ridiculous and unnecessary, I still was so afraid that something might happen to it, I wanted to make sure that I did all I could to insure that it arrived at it’s destination safely. I even emailed the man who bought it and said, “Please don’t laugh at the box I am sending your tin in, it’s a little big!”
All this time, I was having the time of my life. I was so passionate about antiques, and I was making around $1,000 a month selling stuff at the shop….I just kept putting my pain on the back burner. I could not, or would not, allow it to ruin what I was doing. I refused to listen to the pain signals my body was SCREAMING on a daily basis. I would just keep on going, keep on running….I think now I was in a race against the clock. To see how far I could push myself before I would literally collapse in wracking pain that would lay me out for weeks at a time. During those weeks, and sometimes even months, I could barely walk. I realized in the back of my mind that I was being extremely foolish, yet I could not seem to rein in my passionate love affair with the antique selling world. I saw that I was actually successful in my endeavors, both at the booth and on eBay….and that only intensified my enthusiasm. I truly could not stop myself.
There began to be some problems that arose after I had been at the shop for so many years…some clashes with the manager became personal and I decided to leave. It was very difficult to separate myself from such a big part of my life, but my “career” on eBay was really taking off, and I found out there was an opening at an antique mall in a neighboring town. I grabbed it, and never looked back. It was bittersweet leaving the shop, but I knew I had finished my run there. I was not only still selling things on eBay on a regular basis, packing & shipping items every week, but also maintaining a booth at a new mall.
The new mall offered me a much bigger booth. I worked overtime along with Larry, to make it look spectacular. I went whole hog and purchased antique furniture as well as smalls to sell, and things started off well. The pain was an ever-present entity, screaming and twisting and howling, but I was becoming a pro at turning off the sound and just pushing forward without a second look. I was almost to the point of putting my mind and what I was involved in, outside or apart from my own body. I know that sounds like some creepy new age astral projection thing or something, but that is not what I was trying to do. I think it was just my own personal struggle to have a life in spite of all that was trying to hold me back. I could not and would not allow anything to stop me from living my dream. Even the most agonizing pain imaginable. I had never experienced pain like I was experiencing at that point of my life. Yet I still kept going.
At times I would need to use my wheelchair, which we had purchased around the time I was getting ready to leave the shop. The staff at the mall was understandably confused….I would be up working my booth and helping Larry move in heavy pieces of furniture, re-arranging things in the booth and then after we were done working in the booth, Larry would get the wheelchair from the van and he would push me through the mall while I shopped for more stuff. The staff never questioned me but I could see the look of bewilderment on their faces. They didn’t realize the inner fight I was fighting every single day.
To be continued…..
So I walked. I put on my Birkenstocks and walked. I walked at a pretty good clip. Too fast for wearing sandals, actually. I didn’t notice anything right away. But later, my feet began to really ache. They burned. They really hurt. I ignored it, as usual. I mean, all those times I went to the big antique markets, the ones with 500 dealers, the ones that took sometimes 6-7 hours of steady walking, with only short breaks…my feet hurt (screamed actually)….I figured, “Oh hell don’t worry about it, it’s just pain and my pain is fibro pain and the docs all told me not to worry because fibro pain is actually pretty benign pain and it won’t actually do any damage.”
So I just kept walking. My feet were trying to tell me something but I wasn’t getting the message. What was actually happening was that the plantar fasciitis and the tendinitis that had been slowly developing over time was getting increasingly worse and worse, and when I took that walk in the Birkenstock sandals too fast around the neighborhood, well….that was the lit match that caused the forest fire to start a burn that would consume the entire forest beyond recognition.
I realized in the back of my mind that something was going on that was probably not fibro. I began to think that I probably needed to stay off my feet for awhile because the little warning bells were ringing like crazy and they finally were getting my attention. In fact I knew that my poor abused feet had experienced something that day in the Birkenstock sandals, something that was way, way bad.
Problem was, hubby and I were right in the middle of a bathroom renovation, we had removed old wall tile and were putting up a fresh batch of plaster and we were trying to do it right so it was taking awhile and I knew I couldn’t just drop the ball and expect hubby to finish the whole thing by himself so I decided that I would “rest” AFTER we were done with the bathroom….maybe another couple days. Uh-huh.
I was SO good at ignoring pain, I was such a pro at silencing the screams of my body, that I just went right back to working on the bathroom with hubby, trying not to worry or even think about the pain and focus on just finishing this freaking job. After a few days, it was done and I ended up being laid up for weeks.
I had an MRI done on my feet. The doctor that I followed up with showed me the films and pointed out the small dark spots on what he explained were my tendons and ligaments. “Those little dark spots on there are microtrauma” he said. “Meaning, small tears in the soft tissue” he said. My eyes got round and my gut dropped to the floor. I was literally looking at the damage that my years of ignoring the shrieks of agony my feet had been giving me had caused. I was horrified.
After that, I remember everything changed. I was afraid to walk. Afraid to go from one end of the house to the other. Afraid to drive. Afraid to get out of bed. The pain was so intense that every step I took was absolutely terrifying. I would wake up in the morning, open my eyes and think OHMYGOD, how am I going to do this. How am I going to get out of bed and walk to the bathroom? How am I going to walk to the kitchen and get breakfast? How will I live?
Larry started making my lunches for me and putting my sandwiches in plastic baggies in the refrigerator so I wouldn’t have to stand for 3 minutes and make them. He put bottled water by my recliner so that I wouldn’t have to get up and get them throughout the day while he was at work. He had to come home and do laundry, cook dinner or bring home take out food and clean the house. Feed the cats. Mow the grass. Shop for groceries. Everything. While I sat in my recliner with my feet up, wrapped in ice packs, living in a quiet panic, along with massive guilt for putting Larry in this position again. For putting myself in this position. Wondering how I could have been so deluded to think that ALL pain was fibromyalgia. I was so distraught, and so scared. Everything came to a screeching halt. Again.
To be continued…..
HOT COALS ~ PART TWO
So. The catastrophe of the full blown train wreck of severe plantar fasciitis and tendinitis in my feet eventually settled down with the help of pain meds, Orthaheel sandals and several months of slowing my ass down. Eventually I got back into life and even though I didn’t like it much, I had to really, really be careful not to get the feet in another flare up from the 7th layer of hell.
Larry & I maintained the booth at the antique mall, and I started using my own scooter, and a wheelchair if we didn’t feel like loading the scooter into the van (by lifting it, we didn’t have an automatic lift on the back of the van). People started getting used to seeing me use one or the other and it soon became no big deal. It never bothered me to use it but it bothered me that other people would look at me differently when I used it. Either they would look at me and smile pitifully…..or else they would turn their heads and try not to stare. I know everyone wondered what was “wrong” with me. I shared a summarized version of what was “wrong” to the staff at the antique mall, and they took it in stride. No one made me feel weird for needing assistance and after awhile it was just the way it was.
After that, I had an episode with my lumbar spine, something went “out” after I lifted my laptop while lying down in bed, and for 3 weeks I had the most incredible pain in my spine. MRI showed a hemangioma tumor (vascular, not malignant). It took awhile for that to settle down.
I’m trying to remember everything in sequence, I hope I am getting it all right….like I said in an earlier post, after awhile it all morphs into this big blurry ball, and I just get through it and move on to the next “episode”. I am sure there are things that I am forgetting.
One thing is my vision, which has progressively been getting worse with age. I now not only have very bad nearsightedness, but have developed huge vitreous floaters that really compromise my vision. When the eye doc first told me what was going on with my eyes, they mentioned “a surgery” for floaters, but they NEVER recommended it because of the extremely high risk of problems. Later, as my floaters increased in size and in quantity, one of the doctors at the facility told me about “a surgery” for floaters that I might want to consider. I said, Well yeah, two of the other doctors mentioned that surgery to me but told me it was never used due to high risk of problems…..he said, Well, in your case it might be worth the risk. I rolled my blurry eyes and said, no thanks. I’ll try to get by with what I have, I don’t want to risk going completely blind. So there’s that.
Oh yeah, I got diagnosed with diabetes several years ago too. It is controlled with diet and Metformin. I cut way back on carbs and sugar when I was diagnosed and immediately lost 60 lbs. No exercise involved. It was a miracle. Since I had thyroid disease it has been nearly impossible to lose weight, so that 60 lbs was indeed amazing. I have kept it off. That makes me pretty darn pleased with myself.
I also quit smoking about 17 years ago. I had smoked since I was a teenager and got up to 2 packs a day. Since my dad died at age 58 due to complications after a massive stroke he suffered during carotid artery surgery, I thought it might be a smart move to quit smoking if I expected to have even the slight hope of a normal life span. It was not easy but I did it and it is my most amazing acheivement ever. My husband followed suit shortly after I quit. So now we are smoke free and we can now smell things and taste our food. 🙂
I have been borderline lupus and rheumatoid arthritis for over 30 years. High inflammation in my blood work every time, just not enough to meet the criteria for a diagnosis. So they send me home. I expect one day to just spontaneously combust and Larry will come home to find my ashes sitting in a heap on the couch. I am literally “A Girl On Fire” (thank you Alicia Keys). The pain from the inflammation along with the pain from the fibromyalgia (which does NOT have inflammation) is intense and stunning. That’s an understatement.
So anyway…..even though I know there are more significant things that I should mention in this very long, drawn out “introduction” to the life of Julie, The Nocturnal Laundress, I will end with this……
I still sell antiques. I still push myself too hard. I still have extreme chronic foot pain, and fibromyalgia….and I have developed osteoarthritis now. I have really not learned anything from all my experiences except that if I plan on having any kind of a life, I better grab for it right now…..because tomorrow, who knows what will happen. Who knows what is around the corner. So I just gulp down pain pills, blood pressure pills (4 different kinds), anxiety medication, Valerian for sleep, this, that and the other. Everything is still a blur because so much has happened that I just can’t hardly keep it all straight. I don’t much care what other people think of me, because it takes too much needless energy to care. I use the small amount of energy I have to run my very successful antique business (I now sell on Ruby Lane instead of eBay and I love it), try to keep a clean house, do laundry when I can, cook dinner when I can, take care of two very spoiled tabby cats, and love my wonderful husband every day.
I love to read, it’s a wonderful escape that I thoroughly enjoy, but it’s getting harder to do now that my vision is so messed up. I play online poker with play money, sometimes I kick butt and sometimes I lose my shirt. Hubby thinks we should go play on the “boat” (floating casino on IL river), but I would never risk losing real money, we don’t have enough to throw away.
Things have been hard for 30 years, they continue to be hard because of my stubbornness, my refusal to bow down to the great Pain Monster (even after everything I’ve gone through, I still can’t stop pushing). I have a burning desire in me to squeeze every bit of life I can out of every day, and that does not include laying in bed every day, trying to rest and wait for things to get “better”. Nothing is going to ever “get better” in my body. My feet are trashed beyond redemption, my fibromyalgia gets worse every year, now the osteoarthritis is turning my hands into knobby-knuckled, stiff phalanges that lock up and ache like crazy. My eyesight sucks and my blood pressure still spikes despite being on 4 BP meds. I don’t have the luxury of time to “rest” and wait for things to “calm down” or get better. I have to hurry. Because someday, my personal “tsunami” will hit….and then that will be it.
WHAT YOU CAN EXPECT FROM HERE ON OUT….
Okay, now that we’ve got all the necessary background information of my life since all my multiple diagnoses out of the way, and you now know a little more about what makes me tick, I just want to let you know what you can expect to find on my blog from here on out.
You will probably find lots of humor in the form of sarcasm, wit (not mine necessarily, but whatever I can find to share that I think is appropriate), and possibly just some plain old goofiness. Although I have a long list of reasons why I could mope around and cry and whine, I try not to do that all the time. I would much prefer to laugh at the absurdity of life. Yes, I will mope and whine at times, because after 30 years of daily pain and all the baggage that goes with it, I think I’ve earned that right. But I’ll balance it with stuff to share to give us all a lift. I promise you that.
I am a firm believer in the healing power of laughter….it has gotten me through countless days where I thought I would drown in the “dark place”, but when I let the laughter in, it lifted me higher.
I’ll also share things happening in my life now. Hopefully you’ll be able to relate my feelings about all the things that I struggle with on a daily basis. Even though we may have different illnesses, we are bound together by the betrayal of our bodies, and that’s a very exclusive club.
I might be angry and just need to vent. If you come upon any posts like that, the most appreciated responses will be that you understand and that you are “with me”….I don’t need or want advice or tips from anyone. I’ve pretty much lost faith in all the magic bullets, miracle cures and special diets. If those have worked for you, congratulations. Those things don’t work for everyone, and not everyone wants to hear about them. Please understand, I don’t mean to be rude, I’m just telling you my preferences. I am an individual and I have been at this “chronic illness” thing for a long time. I am no longer expecting a bolt of lightning from the heavens to crash down and lay my “cure” for everything at my feet in my lifetime. Am I cynical, maybe. Honest and realistic….surely. I do not apologize. I have earned the right to feel how I feel. Period.
I will try to make this a place to come and have a laugh, shed a tear of recognition, feel acceptance and compassion for what you are going through, and above all, a place of mutual support and strength that we can share with one another. I need each of you, and also hope that I can give something to each of you that you can take away from here and use it to get through your day.
Hugs and Love To All Of You…. xoxoxo