Hey I’m Julie ~ The Past 35 Years Squeezed Into A Nutshell….

2-1-2016I’m a sleep deprived antique dealer with fibromyalgia, osteoarthritis, diabetes and more.  I love my wonderful and supportive husband, I love to read good books, I love my 2 fat, spoiled tabby cats, 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

  1. fibromyalgia – diagnosed 33 yrs ago
  2. Graves hyperthyroidism – treated with radioactive iodine 34+ yrs ago
  3. endometriosis with ovarian cysts – diagnosed 34+ yrs ago
  4. osteoarthritis – diagnosed 20 yrs. ago
  5. severe chronic plantar fasciitis & tendinitis – diagnosed 22+ yrs ago
  6. carpal tunnel syndrome – diagnosed 27+ yrs ago
  7. high blood pressure – diagnosed 35+ yrs ago
  8. anxiety & depression – since childhood
  9. spinal hemangioma tumor – diagnosed 7 yrs. ago
  10. herniated disc L3-4
  11. tear in labrum of hip joint
  12. borderline lupus & RA with high inflammation – 30+ yrs ago
  13. GERD – since ??
  14. vision problems including vitreous degeneration – since 2nd grade
  15. chronic insomnia – since childhood
  16. diabetes – diagnosed 12 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

FIRST DAY

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 60 years old and I’m married to a wonderful man.  We’ve been together for over 33 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.

grovelandchapel

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”.

bed

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.

Antique Sign

DISCOVERING A DREAM…

antiquemallsign

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.

Retro sign Antique shop

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.

wonderwoman

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…..

HOT COALS…

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.

fibromyalgia-symptoms

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.

foot_1

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.

tsunami

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.

womanlaugh

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.

womandoubledover

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

seekouthappiness

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58 Responses to Hey I’m Julie ~ The Past 35 Years Squeezed Into A Nutshell….

  1. Trisha says:

    I love the name, your header photo and your attitude! I look forward to following your journey.

  2. dawnhosking says:

    It’s good to meet you, we have similar interests and experiences 😉

  3. Michelle says:

    “Each day is a gift, regardless”. It took me a long time into my diagnosis wit fibro to get to this point. but I see it now and agree

  4. Zyp Czyk says:

    Hello teek55 –

    your “laundry list” is even longer than mine! So few doctors seem to understand the additive burden of all these ailments because they look at them individually and think “that’s not so bad”.

    I would like to contact you personally, but I can’t find a contact form here. You could email me at zypczy+WP at gmail.com. Or simply add a contact form of your own. WP has a ” Add Contact Form ” button in their Page editor and it automatically creates a form that doesn’t expose your email address – perfect for a public forum.

    I just love your background on this site!
    -Zyp

    • Zyp Czyk says:

      Oops – I just realized I have your email address in the message sent to me by WordPress. I’m just tech-savvy enough to be dangerous 🙂

    • teeks55 says:

      Hi Zyp…..I will do that, I would love to hear from you. I cannot tell you how much I love reading your posts. Everything you find is right up my alley. I applaud you for being so diligent in seeking this information out and sharing it. Thanks so much for all your effort!!! Will do that contact form thing ASAP. Thanks!!

  5. dawnhosking says:

    Hi there, I nominated you for the Word press family award. Congratulations, you can see it here:
    http://dawnyhosking.wordpress.com/2013/10/19/we-are-family/

  6. juliasarahelizabeth says:

    The second to last paragraph hit the nail on the head for me. I have a post which I wrote at the beginning of the summer that you would laugh to read. Are we reading from the same script? 😉 I really do feel for you sympathetically and empathetically. My mom has had fibro since she was a kid, but her family did not believe her. I guess she learned to put up or shut up along time ago. I watched her as a child rubbing her legs in pain and constantly moving them from RLS, but she only found that out after I was diagnosed. Being that my father is retired military, we saw drs who could no more tell you the difference between your fibia and collar bone. It wasn’t that bad, but almost. Mom asked about FMS around the same time you became ill. A nurse told my mom if she didnt wanted to get locked up on the psyche ward, she needed to leave it off fast. That attitude persisted with military drs through the 90’s. Since I have been diagnosed with FMS, RLS, RA and a host of others, i have begged her to get treatment. She won’t. She is afraid they will lock her up as she puts it. I plan to introduce a resource on my blog specifically for women in business with autoimmune disorders. I hope you will check it out. It is just beginning and i think you might have some awesome advice for women in business.

    Julie

    • teeks55 says:

      Hi Julie, and thanks for reading my blog. I am so sorry to hear about your mom and her fears. I still have the memory of those days and it’s like a surreal nightmare. I was thrown in with schizophrenics, people getting electroshock therapy, and all I had was chronic pain that no one had figured out yet. Yes I was depressed but what person wouldn’t be, if they’d had unexplained severe pain for 2 solid years and no one knew why? Should I have had a big smile on my face? Seriously? Anyway, give your mom a hug from me and tell her that I understand. I lived through it. It was hell and I still haven’t healed from some of the psychic wounds they inflicted on me. One doctor called me a liar to my face. One told me if I thought fibromyalgia pain was bad, I ought to try bone cancer. Yeah, I’m not kidding. I was treated like the scum of the earth. Now things have changed alot but there is still that stigma, still that disdain…..women in pain are a pariah to the medical establishment and we still have to struggle and fight way too hard to get what we need. Like I said, we’ve come a long way but you never know what you are going to get when you seek help from doctors you don’t know. I am looking for one now since my current doc went AWOL last month (he just up and quit)….and I have an appt. with a rheumatology NP on Nov. 8. I am nervous. I haven’t had to audition for a doctor for 10 years. I have to make sure to not say any of the buzz words that will make me look like a drug seeker, or a hypochondriac…..even though i need pain meds to function and I have a huge laundry list of ailments, some of which are yet to be diagnosed (I’ve been borderline lupus & RA for 30 yrs.). Tell your mom that I understand what she is going through and why she is afraid. I’m afraid too. It’s a terrible position to be in, needing help but afraid you will be ridiculed and tossed out of the office with nothing but hurt feelings and no help. I’m glad you read my blog, and I hope you and your mom can both be treated with respect and good success in finding help. Your blog about women in business with autoimmune disorders sounds right up my alley. Please direct me to the URL and I will be more than happy to check it out! Thanks Julie xoxo

  7. Thank you for sharing, I can relate to so much of what you’ve written as I tend to keep the pain to myself and push through to get things done as well.

    • teeks55 says:

      Thank you so much for taking the time to read my stuff….I know there are so many of “us” out there who have such a hard time not pushing ourselves too much….we all seem to go beyond our limits so often and end up in a flare. I do it all the time…..but after this last one, I hope to have learned once and for all that if I would only just cooperate with my body instead of try to out run the pain…..(which cannot be done)….I would manage to stay on my feet so much longer in the long run…..I need rest breaks and to pace myself. And those two things are both things that drive me bananas!!! I don’t like to stop doing something until that something is finished. I don’t like to quit in the middle of something, but I have to recognize that my body must be considered (and past flare ups remembered) or else I will spend more time on the couch when the pain catches up with me and slams me down again. It’s the one lesson that I have been trying to learn for 30 years. LOL (not the brightest bulb in the box!!!) Thanks again for reading my blog. xoxo

  8. dawnhosking says:

    I’ve had issues with my feet and am just so used to ‘carrying on and ignoring’ that my achilles tendon became injuried, then on my other foot the same thing happened. Every so often I’ll feel nipping sensations so I now listen – it hurts.

  9. dawnhosking says:

    I have nominated you for an award, you can see it right here. Congratulations 😉

  10. dawnhosking says:

    I nominated you for an award, you can see it right here http://dawnyhosking.wordpress.com/2013/10/31/i-bow-to-you/ 😉

  11. Jumping_Jenny_444 says:

    Hello! I have nominated you for the “Most Influential Blogger” award! Click on the link below to find out more on this special award. Congratulations!!
    http://myfibrotasticlife.wordpress.com/2013/11/02/plus-one-more/

    • teeks55 says:

      Ohmygosh, thank you Jenny! I appreciate the nomination very much!! I will post on my blog ASAP. I did too much today and need to rest tonight. Thanks so much for this honor!! Enjoy the rest of your weekend. ~Julie

  12. Pingback: The most influential blogger award | Fibro... Dealing and coping through laughter and tears

  13. Pingback: Unique leaves award | Fibro... Dealing and coping through laughter and tears

  14. Pingback: The most influential blogger award, round 2! | Fibro... Dealing and coping through laughter and tears

  15. dawnhosking says:

    You been awarded something very special, check it out here: http://dawnyhosking.wordpress.com/2013/11/24/dragons-loyalty-award/

    • teeks55 says:

      Awww! Thanks so much Dawn!! I have been sort of out of the loop the past few days. After the big tornado outbreak here, I have had the wind knocked out of my sails in more ways than one. I want to come back and write about it but right now, I have no words. There are no words for what I saw the other day when I actually went and surveyed the great damage and devastation of the small town of Washington, IL. My heart aches and I feel paralyzed. I want to write about it though and hopefully soon. Thank you my friend for this award, and I promise to get back in the swing of things soon. Writing is cathartic and I feel a need to do so as soon as possible. I want to hop over and read what’s been going on with you soon, as well. P.S. I have increased my Gabby, and she is actually helping the pain in my feet!! It’s not perfect but much improved! I am so grateful. I hope she is helping you as well. Onward, Warrior Princess! We have worlds to conquer!! xoxo HUGS

      • dawnhosking says:

        Hi Julie,
        It’s good to hear from you though I am so very sorry to hear about the destruction, I cannot begin to imagine what that is like. Just awful, how very awful it must be. I send you much love and hugs my friend. Take your time and write when you are ready, it will be heartwarming to see you back. I am so glad to hear that Gabby is helping out and I had a really interesting experience too — I had increase to the management dose of 300mg three times daily by using my 100mg capsules. When they ran out I asked the GP to prescribe the 300mg capsules so that it is easier for me to take and they seem to be stronger? The pain is eased greatly and I am more sedated. Bizarre but I’m not complaining. Onward and upward we do have worlds to conquer. xxx Hugs

  16. teeks55 says:

    Yes…I was on the 100mg capsules, taking 200mg three times a day. Not enough. My new rheumy nurse practitioner raised me up to the usual dose of 300mg three times a day, and I’m doing much better with my feet. I am using up my 100mg capsules, but she did prescribe the 300mg capsules which I have not yet taken. I look forward to dealing with a few less “pills” in my pill box!!! My pill box is overflowing as it is, and will be glad to reduce the amount that I take. I have 3 pill organizers, and take a big handful morning, noon and night. Crazy. I will go back to see the nurse practitioner on Dec. 13 for a follow up appt, to discuss my xrays and blood work that was done. I am expecting a new diagnosis of Sjogrens…..trying to read up on it and learn about it. I feel like a classic case. Also wondering about possible additional things that may show up from the testing, not sure what but wondering about lupus or RA…..hoping for the best but preparing for the worst. I have felt so lousy for so long and getting worse. I hope, if they do find more problems, that there will be treatments to help me feel better. So far, Gabby is only helping my foot pain, not my body pain from the fibro or the osteoarthritis. So anyway, I will see what they say on Dec. 13…. Thanks again for the Dragon award!!! I will get it on my blog soon. xoxo

  17. dawnhosking says:

    I’ve awarded this wonderful thing to you http://dawnyhosking.wordpress.com/2013/11/26/my-precious/

  18. dawnhosking says:

    Shake that bootie — you have been presented with the awesome Sisterhood award. Check it out here: http://dawnyhosking.wordpress.com/2013/12/04/sisterhood-of-the-travelling-blog/

  19. belsbror says:

    Hi! I nominated you for the Awesome Blossom Award. Please get the badges at http://wp.me/s32YrK-wishfuland get more info. Have a terrific New Year. Blessings, belsbror

    • teeks55 says:

      Hey there, and thanks so much for the nomination!!! I have been on a blog hiatus for awhile but want to get back to writing again soon. I really appreciate the award, thanks again and Happy New Year!!! xoxo

  20. I feel like I’ve just discovered a twin. Perhaps I knew you in a past life (I was either Joan of Arc’s shoemaker or a cockroach on the Titanic – not quite certain yet – maybe both). Having thus proclaimed my insanity, I really do relate – your Laundry List is reminiscent of mine… Feeling to Forgetting (a blog here which I’ve been ignoring lately).
    I’m grateful I came across your blog (via belsbror). I wish you a healthy, pain free 2014.

    • teeks55 says:

      Hi there and thanks for the note….I will check out your blog soon. I have been on a bit of a blog hiatus for awhile…..need to get back. It’s therapeutic, yet can be painful to write about subjects from the past. I appreciate your kind comments and maybe they will be enough to nudge me back into writing again. Thank you so much and happy new year!

    • teeks55 says:

      WOW Megan!!! Thanks so much!!! Lordy, I have a pile of awards to accept. I will gratefully and humbly accept but it may take me awhile to get everything done. Thanks again and happy new year!! I really appreciate you reading my blog and thank you so much for your encouragement. xoxo

    • teeks55 says:

      Hey Megan….I just wanted to let you know that I am going to just accept the Lighthouse Award since I’ve already been nominated for the Liebster and the WordPress Family awards….I have those two awards displayed on my blog already so as much as I appreciate all three of these nice awards, I think from now on I am just going to accept awards that I haven’t already accepted….does that make sense?? LOL…. I am trying to get this done, and I do thank you so much for nominating me….each award I get means a lot to me….I am starting to get a big head!!! LOL Truly, I am honored. So thank you very much and hope you understand. xoxoxo

  21. Pingback: On Awards and this weekend | It Goes On

  22. olivia rousseau says:

    You are a true survivor! Your story so touched me, thank you for sharing your journey so far. I cannot wait to read more. I wish you much love, health and happiness! (I am also an antique fanatic!)

    Hugs to you,
    Olivia

    • teeks55 says:

      Thank you so much, Olivia! I appreciate your support. I am glad that you were touched by my story. It is always satisfying to know that the things I write are actually connecting with other people. I have decided to write more and hopefully it will not only be therapeutic for me, but it will resonate with others. Thanks again for taking the time to comment.

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