Category Archives: EDS & Hypermobility Spectrum

Pill Pansy Day

By: JD Author, Reporter-Journalist

If Confusion is the first step to knowledge,

I must be a genius!


I am beginning to feel like perhaps I should invest in CVS pharmacy stock.  It seems my insurance company has invested thousands of dollars a month on my behalf.   At the behest of the glorious prescription pad for which my doctor has inscribed his name and passed to me, the whirlwind of change has begun.


Yes, it is happening once again!  This has been a 17-year long quest for answers and treatments based on months of needles, x-rays, MRI’s and evaluations.  Now it has led to changing meds.  AS modern medical testing leads to more accurate diagnosis’s, pharmaceutical companies and supplemental alternative producers throw their two cents into the mix.

In this process, I, the human being, become the guinea pig in search of what is in my best interest medically.  I have tried to sum up into words what it feels like when all these changes happen and I found I can consolidate it into a short sentence.  IT SUCKS!!

I woke up yesterday and spent the morning dizzy and in a haze.  I felt like I was trapped in a body twice my size and difficult to move, knowing I still must work and complete what the day expected of me, yet hard to do with the cloud that circled my brain.  It almost felt as if I were in London on a brisk morning trying to navigate an unknown city amidst the heavy fog.cartoon-pills-24114860

Today was not much better, but instead of the sluggish weight I had the day before, I was like a hyperactive child needing Ritalin ®.  I have anxiety that is making me so shaky, I frequently keep hitting the wrong keys on my keyboard.  I did try to start this journal entry via Voice app. But my words are not dictating correctly.  My heart rate is elevated.  It is the transition week where I must “detox” from my ASD anxiety meds for the flushing of my liver.  This is necessary to secure no damages to my liver from the toxins in meds, despite the herbal detoxification remedy that was added by my nutritionist last month.  I am more nervous than that old saying “cat in a room full of rocking chairs”, I probably am as antsy as a sack of Mexican jumping beans about to be roasted on a bonfire.  Good time to write though, because when I am not having moments of crying over absolutely nothing, I have a sense of humor I can put to print.

It is so easy to be full of humor and entertain others with my antics via the internet, social media.  In person, it is hard, because without time to think between comments and communication with others, my “scenario” filter is not there to determine all the time what is a joke, or factual.  I take everything literal, and shouldn’t.  Sometimes I feel like a criminal trying to decide what my answers or replies should be when in an interrogation.  My usual reply is to just stick with simple replies, such as; “ok, yes, interesting and nice”.  I also pause to gauge the facial expressions of people I am with to see how I should react, and hope they never notice.  I am darn good at it too!  I have had decades of practice.

Here I sit on my nice back deck, enjoying the sunshine, feeling half-high from a new med temporarily replacing an old med, and scanning my yard, obsessing on everything out of place or not aligned, heart racing, regretting not being on my OCD med, yet too dysfunctional to do anything physically to remedy the disaster I see.  Damn them leaves for being on my lawn, scattered in disarray and not neatly stashed in lawn bags!  Screw you, you ugly weeds for peering up between the half dead grass and muck, that replaced the beautiful grass at the hands of winter!  I need to go inside and not look at this…

Just another day in paradise.  Those of you with medical conditions requiring medicine that has an effect or affects your mental thought process and must withdraw from them for medical reasons can understand.  Between the last paragraph, I typed and this one, I have had a mini adventure.  As I came in the back door with my laptop I tripped, God knows this is nothing new since I have the coordination of a drunken monkey walking backwards.  My laptop, which luckily, I closed the lid, became an electronic UFO (unique flying obstacle), that soared with such great speed through the air and bounced off the counter in the kitchen and landed on the floor with a thud that my three furry kids went running for cover.  The only time I have ever seen them move that fast was when they heard cheese wrappers being opened by my grandson.  Whoever says dogs cannot travel at the speed of light have never seen my dogs when cheese is involved.

I picked up my laptop, that smartly has an impact tough-case for construction workers.  Not that I do construction, I am more the destructive natured person by circumstance.  It’s called clumsy!  Yes, that’s me, but I am okay with that.  They make great braces and casts for people like me.  I even have a new fancy brace on my left hand that will remain part of my wardrobe until surgery for torn ligaments can be done in March.

So, I will say bye for today, and let you know tomorrow more on how my medication roller-coaster ride proceeds.  Until then Cheerio people and remember that whatever life hands us, we must try to find the good among the bad and ugly, or we are not living, were just existing.

©Copyright protected 2017: NWU Local 1981

©IAPP Author/Journalist Press ID # 1007490467


Catching Up

By: JD Author, Reporter-Journalist

Before I ask you to sit with me, I must be able to sit with myself.

Before I ask you to accept my pain, I have to accept the pain myself.

Before I ask you to understand me, I must learn to understand myself.

Before I ask others to love me for who I am,

I must be madly in love with myself.

~L. Thorn

It’s been quite a while since I have taken the time to put words to screen and update my followers here on what’s been happening in my world.  Not that I have given up writing by any means. I have continued my professional blog and writing for a few commercial outlets, but I have been neglecting to post my work here as well.  I suppose it is because the medical and emotional battle that I have encountered over the last week and a half have drawn my focus elsewhere.  If you’re a grammar nazi.. stop now….this is a judgment free zone today, and until you can look in the mirror and appear flawless in the eyes of everyone, go find another blog to troll.

I have at least a dozen articles I still need to upload, yet it seems procrastination is my forte as of late.  Or perhaps what I have written may offend some.  Yes, me, the person who usually speaks her mind and isn’t afraid to handle the consequences of being an opinionated journalist, has taken a step back from opening my big mouth and putting a foot or two in in, so to speak.  I also know during this political year, we have heard enough rants from our candidates, that I felt the urge to spare you such conflict and controversial rhetoric.  It’s also a good thing I have kept my political view off of any blogs as well because I may lose several friends when it is discovered how much of a moron, I think they are for drinking the kool-aid of ignorance.

So here goes folks…. My last 60 days in review.

The beginning of February I was privileged to be present when my beautiful granddaughter made her debut.  A healthy and gorgeous little girl with the sweetest smile that would melt anyone’s heart within seconds.  The day after her birth, the announcement came that another one of my offspring would be bringing another child into the world this fall, adding even more joy to our lives.  Yet in the same month, my heart was darkened by a battle and struggles following me into the month of March, that have been hard to cope with.

I have always tried my hardest to be a strong person and found myself failing more times than not.  I find that I am smiling and just going through the motions of life and hiding some of the angriest and ugliest thoughts inside my head, which have been a detriment to me while I am learning to cope with southward heading health issues at the same time.  But how does one let the many thoughts out, when we try to be open with those closest to us, only to discover, they will never understand, because they have never walked the troubled paths we have? Some of you can relate due to the battles you endure that are equivalent in nature, and I always appreciate your wonderful private messages and expressions of caring that are genuine and some days I even appreciate the warm wishes and words of encouragement from those who express them for ulterior reasons, they give me a reason to snicker and scratch my head in amazement.

My greatest weakness is coming to terms with limitations my health creates for me and indecision as to what my future holds for me, and creating goals that almost seem impossible, and drawing the line between what I know I can accomplish and what will only be a dream.  It sometimes reminds me of taking a journey in life and traveling only to discover that your traveling that road and all of a sudden you realize that the luggage and travel maps you intended to take on that journey are left back at your starting point and you get lost along the way… alone.

Ehlers Danlos and Hypermobility Spectrum creeping up and kicking my butt was one of my biggest fears in life, but actually it has not been near the battle this year that the Arnold Chiari Malformation and Congenital Cyclic Neutropenia boxing match has been.  It has been and continues to be an all-out fight.  The ringmaster has taken a nap and the rounds keep going, with no end in sight.  I have my boxing gloves on, but haven’t had the strength to get in as many good blows as I would like.

Having good health insurance is something I focused on long ago, to prepare me for the impact of many medical tests, therapies, treatments and medications that may be needed as all three conditions progressed, but I was not quite prepared for all the regulatory changes due to politics, the misunderstanding and callousness of others, nor the misguided support that was more an emotional wasteland than a benefit.  Discovering that even with good insurance, your medication intended to keep you alive is costlier in one month than a cremation, should you die can be eye opening.  Just don’t express that frustration to others, they may get the impression you’re giving up.  Those who know me well, do understand that I can be snarky at times in my comments and are well aware of the fact that I plan to go nowhere at my own hand, by ignorant choices or plot.  I am a fighter, always have been and will remain one, but something has to give.

Last night, I found myself reaching that proverbial bottom.  As I sat on my bathroom floor in tears at 2 am, I realized just how vulnerable to emotion and pain I could be.  I know I have people who care about me, love me, and family that is supportive, but they would never understand just how helpless and alone I felt at that moment.  It is easy to hide most of our weaknesses from those we love and who love us.  I have become really good at doing that with some of the people closest to me.  But I have to admit, it is getting hard to keep the filter on my mouth functioning at 100%.  That smile on my face or that inquisitive, interested look, is starting to fail at hiding the “What the Heck are you thinking”, “seriously??” “Yeah right, blow smoke up someone else’s rear-end”, and “look in the mirror fool”.  Yeah, that filter is failing.

It’s failing as fast as my get-up-and-go some days.  Granted I have added to that battle by deciding to register for college and finally take classes in something I love doing.  I do ask myself why, and the only answer I seem to be able to give myself is, I have a desire to do something that may be beneficial in advancing me financially, since journalism work is limited with my medical capabilities at the present.  Granted some people become quite wealthy as a journalist, but the phrase “starving writer” was not coined as a joke.  I chose IT, computer servicing, repair and programming.  That is a field, I have in the past found rewarding and profitable on occasion.  With certification, I hope to be able to further that endeavor.  Perhaps it is also the need to keep sharp on technical endeavors and force my mind to stay sharp as I experience more cognitive difficulties my Multiple Sclerosis seems to be throwing at me lately.

Yes, believe it or not, I used to pride myself in the ability to remember things for decades.  Even useless information of no relevance has inhibited my brain, but the ability to recall basic tasks sometimes becomes a challenge.  I have never been so thankful to have a smart phone as I have been in the last few days.  The calendar app has been my lifesaver.  It emails me to remind me when I am supposed to get up and take specific meds, work on homework before a deadline and exactly which doctors office I am supposed to be at and when.  Then there is the wonderful Google® maps.  Lord I love that thing!  Although I know in my mind where every doctor’s office is and how to get there, I have actually found myself parked on the side of the road, clueless and upset because I forgot how to get somewhere I have been going to for over a decade just a few miles from my house.

As I deal with the cognitive issues, I also deal with the lack of common sense and judgment issues.  I find myself irritated with other people, and this is shameful of me.  As I sat there on the floor of my bathroom in tears, I reflected on how I felt inside.  I know medically I am a disaster right now, but emotionally I can take the reins and do something about it.  How can I expect someone else to understand me and be compassionate in trying to understand my struggles when I look at their exterior and might subconsciously judge them?  I find I am not the only one guilty of that.  Several of my close friends are as well, and perhaps if I change my ways of late, I can sway them as well to be less judging of me and other people they are around.  I can’t let my health make me a bitter person, I have to find my happy place again.  I needed to find the side of me that never decided how a book was until I opened the cover and read it.  I did the only thing I knew I could do.  I picked up the phone and called a journalist and talk show friend of mine who also has Multiple Sclerosis and we talked for hours.  I rarely talked much to this individual, but had held on to their phone number for several years after we met on an NBC talk show airing.  It was the most healing conversation for me emotionally, and I was surprised they were willing to take the time to just listen and share their personal experiences as well.  It was the first time I was able to just be 100% me, struggles, emotions and all.

It was nice to open up to someone I didn’t have to see every day.  Someone who could be neutral as I shared every little detail of my life.  From work or lack of, to my relationships and medical, the conversation released a heavy burden I bore.  It was easy to just let go, because I knew that they were listening without judgment and ill advisement from lack of experience.  After that call, I felt refreshed, I felt like I could get back into the boxing ring of my life and kick this battle’s butt.  He told me to start believing in myself more and just live one day at a time, one week at a time.  He reminded me of the importance of walking through life with people that walk at the same pace as me, and spend less time waiting for people to catch up to me as I reach for my future.  In life we all move at different paces to our goals, choose those walking at the same pace forward, and you spend less time looking over your shoulder, wondering if they really will meet you at the end of that trip, or not.  I felt more confident.

So now here I sit, sharing with those in my world a not-so-picture-perfect me.  I won’t share the most private details, and I know things will change because I can change them.  But I will share a few of my challenges with you as I fight this medical battle as best I can and within the limits of my ability, my finances and my skill allows.  I will meet every challenge head on and without looking back.  I will rise above them and not let them destroy me.  My congenital neutropenia has stripped my immune system of the ability to fight anything and near everything germ and fungal wise in our natural environments making work outside of the home near impossible.  Working from home has its limitations as well when I am so tired and weak I find myself eating a peanut-butter and jelly sandwich because I haven’t the strength to cook.  I struggle with some cognitive issues but have adapted by using reminder apps and sticky notes all over my house.  Some days the pain seems like it is going to suck the breath out of me, but asthma from allergies beats pain to the punch and I fight for every breath to do things in my house.  I know it will eventually pass, but damn if it isn’t a struggle at times!  I take a mental time out and remind myself that if I am breathing, I need to consider myself lucky, because someone else in the world stopped breathing today.

Earlier today I got an even better look at myself as I walked past my reflection in the long glass walled hallway of the medical center, heading to another well hated, infusion therapy session.  And yes, the torture-some, needle wielding nurses do work Sunday’s to keep us on the road to recovery, as we thanklessly complain about having to go on a weekend.  What I saw gave me a perspective that impacted me tremendously.  I stopped for a moment and stared. Staring back at me was a 51-year-old woman, in hideous sweat pants, a mismatched sweatshirt, leg braces, walker, crooked ponytail, dark circles from lack of sleep and a smile came across my face.  Yeah I was a sight for some judgmental eyes, but I saw something totally different, I saw how wonderful it was that I am blessed, despite the look of pain I felt.

The braces, although unsightly on my wardrobe that already had issues of their own, and painful to wear, were keeping the muscles in my ankles tightly in place, so I could get to my destination on my own volition.  The walker sported by most seniors, made sure that I had enough balance to keep me from face-planting and ensured that when I needed to take a brief pause down that long hallway to my destination that I had a perch to do so on.  When so many people cannot even walk or are missing a leg, foot or toes.  It may hurt like hell some days to walk, but at least I have limbs to feel that pain and take that step.

The sweatpants, although tacky as ever, were at least clean and fresh when so many people haven’t the luxury of clean clothes daily. The arms that held on to that walker and pushed it forward to motivate my legs to press on, still exist and I recall how wonderful those arms are to have.  I can use them to reach out and hug those whom I love, feed myself and put on the hideous attire I had on, all by myself.  I raised my hand up as I stared at my reflection and wiggled my fingers, thankful that I have all 10 to do so many things, even when they have a mind of their own and don’t always cooperate, I have them!

I looked at the dark circles under my eyes, and started to laugh. They looked misplaced as they sat behind my glasses and the yellow mask I must wear as a safety measure from germs for which I cannot battle very well.  I know they made me look like a hungover bum, but at least I could still see out of my eyes, when so many people are blind and cannot see the beautiful things in the world, that we sighted people take for granted, or use to judge the appearance of others, when we need to take a hard look at ourselves in the mirror.  I am blessed.  I do think however that I should attach some fake eyelashes to the rim of my glasses and paint bright lips on the mask, so I can give others a chuckle in case their morning is rougher than mine.

After the few moments of reflection, I decided I had better move along before someone assumed I should be rerouted past the infusion center for my treatment and be shuffled further down to the psychiatric ward for therapy.

I managed to get through that morning infusion without as much aggravation as the previous one and with a renewed sense of hope and appreciation.  The medical battles are still here for a bit longer. I know I will continue to have many struggles off and on as life moves along, but I will learn to better fight them emotionally, and share more of my journey with others, in hope to help people find a way to cope as I am learning to do.

Every day we are given is a blessing and gift from God, and instead of thinking of where I want to be in the future or feel I should be, I will sit back and just appreciate each day as it comes for what that day has to offer and be thankful that it exists.  I will try to not have any negative thought about another person’s struggles, appearance or demeanor, without reminding myself of my own reflection that is not perfect either.  Most of all I will fight for what I want and need and not what might be could be or would have been.  I fight for me, because in the end I am accountable to me.  I am weak, I am vulnerable, I have flaws, but so does everyone else, let’s lift each other up. I am sure there will be days I have to take a step back again and remind myself of my own posts here, and try hard not to lose myself again, but that is the beauty of free-will, we can choose to live our lives to the best of our ability and adapt.

Time for me to do some adapting, I am off to finish my homework, do a few more job applications and actually make myself lunch before the side effects of that morning infusion kick in and make me want to crawl in bed and sleep for about 12 hours.

©Copyright protected 2016: NWU Local 1981

©IAPP Author/Journalist   Press ID # 1007490467