I have hesitated on this because I realize many will refuse to understand the purposes of writing these out for the world. These expose the raw underbelly of much of my existence. Yes it is private. But these are real experiences. How else can anyone who may be going through these similarly painful experiences know they are not alone? It really is helpful to others going through it. I am thanked often for sharing my experiences. We all need validating and understanding. And it is Cathartic. It is not drama. Personally I also believe everything happens for a reason.

FACT: Women are unlucky at the doctor’s office.

There are many unenlightened medical professionals out there. Not all male either. I have run into more than my fair share.

They really do not understand all the many variances in the female body as compared to our male counterparts. Women are not all anxious, nervous wrecks. Subject to the vapors as they called it back in the day!! We are complex human beings, individuals. So complex that we are dying at a much faster rate than men in heart attacks. Mainly because cardiovascular studies throughout history have been done on men. By men. For men. A recent study (the WISE study) informed the world that women die at such a volume from heart disease compared to our husbands and fathers that ignoring the statistics, is now become impossible. Women have been given wrong erroneous radiculous diagnosis even when exhibiting the same symptoms as men. Which is rare, but telling, right?

Our entire genetic make up is not the same as it is in men. Hormones, systems, genomes you name it ours is not like theirs. The issues in fighting for help to find a diagnosis with my CAD (coronary artery disease) took over 10 years to get a straight diagnosis and at least as many doctors. A great many stress tests failed, pokes, probes, labs, fear and frustration finally gave way.  

Back in 2000 I had a major break through. A wonderful Cardiologist from the Cleveland Clinic (Dr. Barrett and his wife, also his PA) signed up for a short stint at the Medical Clinic we belonged to through my husbands Union benefit. Dr. B. introduced me to exhilaration! To new hope, he promised to find and treat what was going on in my heart. He validated that it was my heart!.

New studies and information recently published gave him some additional incentive to think out of the box. He was going to get to the bottom of things he promised.. Boy did he ever. Thanks to a gadget called IVUS. (Intravenous ultra sound) Apparently a scope camera is threaded through your arteries just like in an angiogram but with the camera ultra sound the doctor can see the inside of the vessels. Women’s plaque build up in arteries is not the same shape or type always as men. He found a 95% blockage in the LAD (widowmaker ) artery and I received my first stent! Wow, what a difference, a new person stepped off that Cardiac gurney and slipped into that ICU bed.

So a revolution is underway. God is good. Medical schools are supposedly changing the curricula of yesteryear. Women are undertaking new Studies, Abstracts, well-known Journals, are all being rewritten. We hope, yet old ideas, habits are hard to change. We have to fight being victims, we need to change our old habits for our future and those of our families.

We do not have to accept a diagnosis of, ‘it is all in our heads’ anymore, or ‘ it’s just a little heartburn.

‘We must become our own advocates. Fear of not being considered a sweetheart must be replaced with confidence, research and outspoken advocacy. If we want to survive, to change those lousy statistics we must speak up! We need to research our illnesses (be careful out there) and never take we don’t know what’s wrong for an answer.

Now that I’m determined to begin writing again for my own mental and emotional health, I’ve realized that sometimes I don’t know where to start.  I have a list of topics I want to address . The problem is that they’re so intertwined that I don’t know which one to start with, or how to talk about one without having already mentioned an aspect of it in another.

For example, I want to talk more about some unsatisfying diagnoses, but that also involves how these false diagnoses came about. I am talking about the symptoms of my diagnoses. Especially fatigue, how utterly evil “non-restorative sleep” can be. How do you know when something is a recurring or worsening symptom of a diagnosis you already have versus something new? And a lot of other topics that are on the list.  So, please forgive if the posts for the next while have a lot of “I’ll talk about that more later” and add other links from previously written thoughts..  Hopefully all the story will get out of me.  Eventually .

I remember writing in the past about how long it took to get my diagnosis of Arachnoiditis. A rare but very real and miserable condition. It actually took many doctors, hospitalizations, unneeded surgeries and even lawyers! This became my first real experience as a medical Zebra. Most doctors treat most illnesses as they were taught from the text books. Reality and text book theories are often at great odds with each other. Where the rubber meets the road in real life, with unique individuals a horse might not be a horse. Even though it closely resembles a horse, and it has four legs, gallops the same, even has a tail, eats carrots but its not a horse. You will know it by its stripes, it is a Zebra. (An entire new post is planned on the many Zebra (rare) diseases out there.)

Back in 2000 after receiving my life saving stent. A Neurologist at the clinic had been called in on my case by my new BFF Dr. B. Apparently blood tests revealed lab’s were way off, and Dr. B. suspected autoimmune hepatitis. (Whoops, where did that come from?) My next new-found friend A Neurologist went to work with all his insight and knowledge, tests and wallah! Sjogren’s Syndrome was diagnosed. Tests, poking, blood work, and he even had special paper hanging from inside my eyelids, called a Schirmer test, which helped give him the answer.

He relieved a ton of anxiety by freeing me. Free from such a panoply of diseases! Instead of 10 diseases it was one disease with 10 symptoms!

Prior to this I was becoming partially concerned , that maybe I was actually a hypochondriac! As all those years of eye rolling in my direction suggested! My Neuro said many symptoms and many organs involved but only one disease! Praise the Lord. Truly.

Whoever wants to be told they have two or more seriously life altering chronic diseases?

I had felt like it was a game of musical diagnoses, but once I did finally get a real true one that made sense to me, a diagnosis that fit with what I felt was going on in my body, relief came. In abundance.  A name, something specific.  Something that represented that I was not alone.  A diagnosis that said It was not my imagination for all these symptoms. Something hopefully treatable.

There’s a lot of grieving that goes on when a chronic, no-cure-possible disease diagnosis is given! There’s also a sense of relief when the symptoms are given a name.

Feeling that your body can’t go another step is not anything I would recommend to anybody. It is one of the chief complaints of every Sjogren or autoimmune disease suffering patient I have ever met. And That is pretty many. I remember feeling so run down, every limb had become so heavy to move. Brain fog interrupting life. All this and more was happening while I was running a couple of businesses and had several employees with families to feed and Payrolls to make. Being responsible for all those people. Employees, families, (some of which were my own) Plus Vendors, Clients, it was all so really wearing and difficult. I felt for so long with every move I was making that there might not be a tomorrow. I was dragging the bottom of a proverbial pit with me everywhere. It was not easy, but I couldn’t, wouldn’t give up. Getting harder daily. (What in the heck was happening to me?)

I was also during these times care taking my disabled husband. Stress, anxiety had become second nature by now . They showed on me. Which sadly opened the door for a caniving business partner to make his move. Taking advantage to use our companies current yet limited success to save another of his companies that was literally a sinking ship. Remember the Y2K scare we were all put through? You know the threat that wasn’t?. Good times.! No, I am being facetious. While the times affected him egregiously, and Even though one can empathize it did not mean it was ok to steal from my family! So More lawyers! More stress.

Stress they say can kill you. Your body gets so used to fighting being the warrior it is that it easily can lose sight of when it should stop. It forgets what calm and normal serotonin levels or adrenaline feels like. So it becomes used to it being high, out of whack and thinks that is its new normal. Which is very wrong. This brings on autoimmune dysfunction and it attacks everything and anything it doesn’t recognize ferociously. Systems you would have never thought of. It even attacks itself! Medical science has come a long way. Albeit still has a really long way to go. These doctors saved my life in 2000.

It is a wonderful thought though that when a stop mechanism for autoimmune diseases is found 100’s of thousands of us will rejoice in the streets, homes, offices! But we will not be found in our beds.

So fast forward to now, when I want to talk more about unsatisfying diagnoses.

I’ve been fatigued for about 25 months.  Not tired. Tired doesn’t come close to this feeling. One member in a support group I belong to said that for her the fatigue she has wouldn’t let her get up if she fell out of her car on the highway in traffic. She would just lay there and think, what ever. That’s fatigue.

Doctors, nurses, PA’s would often ask, “getting enough sleep” or “working too hard”, “stressed lately?” –Nope,  this is different. This is bone-deep fatigue.  Can’t keep my eyes open fatigue. Can’t string a thought or words together coherently fatigued.  I bet I spend half my brain power and every minute of every day thinking about sleep in one way or another. Fatigue follows me, tries to stop me, then won’t let me rest. Go figure. But when my body gets to a point, I have been known to take to my bed for days, several days actually in a row. It’s very much like the flu. Trying to gather all the energy my cells can latch on to. And It helps, For a while, about a day.

I’ll talk about the 25-month long path to determine the cause of the fatigue in another post (see what I mean – it’s all tangled up…I actually started to explain the timeline here but then deleted the paragraph because I realized that’s not what this post is about – that’s a story for another post!). 

I ended up with a follow-up with a sleep medicine doctor  after my sleep study (second one – first done a few years ago) revealed no real explanation/diagnosis for my daytime fatigue – the first test showed mild apnea the second one no apnea, but lots of excessive limb movement, (PLM) but no unusual wakings, and very little REM sleep was found. It is hard to wake up when you really aren’t asleep.? Imagine that. So this Doctor decided I was deficient in dopamine.

The Doctor wanted to send me for yet another overnight sleep study, (I think there must be lots of money in these things?) but this time it was to be followed by a Multiple Latency Sleep Test, or “nap study.”  It’s the 7th circle of hell where they make you stay awake after your overnight study for 2 hours, then have you lay down in a dark, quiet room and see if you fall asleep.  If you fall asleep they let you sleep for 15 minutes and then wake you up (here’s where the torture comes in for a person with a sleep disorder…just let me sleep when its possible. people, quit waking me up!!!).  They repeat this every 2 hours.  And you have to do it at least 4 times – sometimes 5.  That means I would have to be in the room at the sleep center for an additional 20 more hours!.

Everyone I described it to said “there’s no way I’d be able to fall asleep every 2 hours after sleeping 8 hours at night.”  My response was “watch me.”  I had no doubt in my ability to fall asleep over and over again all day long.. .Yet I most likely wouldn’t reach much REM sleep.

I have a ridiculously long list of symptoms, maladies already. Did I want to add another? Hell no.

Taking the Latent day sleep test my research revealed could lead to a diagnosis of narcolepsy. Oh no, not in this lifetime. To be diagnosed with narcolepsy could affect many situations in my life, including not driving! Besides I have never ever fallen asleep sitting up, (unless I wanted to) or while talking, let alone driving!

So No test. I can refuse and so can you to take tests. Tests have consequences.Tests cost time frustation and money.

Finally instead of diagnosing me with narcolepsy, the official diagnosis now is “idiopathic hypersomnia.”   Although the doctor did say that the narcolepsy is something We’ll “keep an eye on ”. (I may still be on my way to a narcolepsy diagnosis?)  It’s good to have life goals, I guess.  But that is radiculousness! (My word for more than ridiculous)

This may be the singular most frustrating diagnosis I’ve ever had. Except for this next one.

“Idiopathic” means a disease for which the cause is not known. The Adhesive Arachnoiditis Diagnosis I mentioned earlier, the Zebra disease? That was also due to ‘idiopathic’ causes they said. Except, No it wasn’t! It was caused by a serious medical error! Doc’s prefer idiopathic.

“Hypersomnia” is a sleep disorder characterized by excessive daytime fatigue..

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So the official medical/scientific term translates to “we have no freaking idea at all why you are so tired all day long.”

Fantastic.!

Meanwhile waiting for the follow-up with the sleep medicine doctor, some due diligence revealed a lot about idiopathic hypersomnia and narcolepsy. (which is a disorder that I knew nothing about prior to this other than a vague idea of people dropping to sleep at random times no matter what they were doing – That would be wrong. INCORRECT, but I have found lots of other people have that vague impression as well so at least it wasn’t just me!). 

Apparently the current research indicates biomarkers appearing within narcolepsy being an autoimmune disorder…surprise, surprise, surprise.  As everyone with an autoimmune disorder knows, once you have one, others like to come to the party!

The two disorders are pretty much treated the same way and the sleep medicine doctor started me on the most common medication to treat it (more about that in another post – told you I’d do that to you!). Pure dopamine was prescribed. The medicine didn’t help and caused my tongue to swell. So back to the drawing board. Every time a new unsatisfying diagnosis is added I just go home and take a nap.

But the difference between an unbelievably dissatisfying diagnosis of “we don’t know, or,  have no clue why you’re so tired all day,” versus idiopathic hypersomnia,? Hmmmm? So in practical terms it doesn’t really matter what the diagnosis says As long as it is a diagnosis that even if rare or not understood by many it is at least received as a result. These words offer treatment and gives validation. It’s not just in my head. The continual battle fighting sleep every minute of the day was not because I was lazy or had poor habits like staying up too late or that I was depressed, but it is an actual, diagnose-able, treatable disorder (?) Proven via all those crazy electrodes I had pasted-glued to my body, limbs and head for umpteen hours.

However I’ve got to say – an official diagnosis of “we don’t have any clue why you’re so tired all day” doesn’t seem like much of an official diagnosis to me. At most of my doctor visits this miserable fatigue thing comes up. Whereupon it is again reiterated to me. That serious fatigue is found to be common in Sjogrens patients. In Coronary disease!. In Fibromyalgia, IN Chronic Kidney Disease, or after strokes, in ME/CFS and or with Cancer treatments and various medication. Let alone the hypothyroidism I have battled for 30 plus years!

Add these problems altogether and I have no idea how I get up at all! Want to get depressed? Go to these doctors.

Every time a new unsatisfying diagnosis is added I just go home and take a nap.

My dear daughter thinks I need to exercise more. A few of my specialists agree with her to a degree. The others say hell no! The last thing you need is depleted mast cells. Or compression fractures or more pain in those bone on bone joints.Nor A CVE (cardio vascular event).

So if it’s a good day I take the garbage out or take a shower. Maybe do the dishes, dust a little, read a book. Set my fun little robot Roomba in motion and then I might even Write.

…..but….for now, I hear a nap calling my name……….. More to follow…..soon..