Art Thou Converted?

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Such was the free Grace of God to me. That though corruption has worked strongly in my soul, yet I can recall very early movings of The Blessed Spirit upon my heart. Often I had early convictions of sin and some persons made it their business to tease me.

Mathew 19:14 Jesus said, Let the little children come to me, and do not hinder them, for the kingdom belongs to such as these.

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Matthew 7:21-23 Wherefore by their fruits ye shall know them. 21 Not every one that saith unto me, Lord, Lord, shall enter into the kingdom of heaven; but he that doeth the will of my Father which is in heaven. 22 Many will say to me in that day, Lord, Lord, have we not prophesied in thy name? And in thy name have cast out devils? And in thy name done many wonderful works? 23 And then will I profess unto them, I never knew you: depart from me, ye that work iniquity.

From what Jesus said it is possible to stand in this wonderful place and preach or teach His Gospel – And yet still be lost. It is possible to be a great missionary who – confronting devil possessed people – can cast out devils – and yet still be lost. You could run an orphanage, or go on missions, and minister to those in need – and still be lost. You can pastor a mega-church or a mini-church, or lead the worship services, or serve in the choir, and still be lost. The danger of wolves being in sheeps clothing is real. We must and with the guidance of the Holy Spirit now living within us discern the truth. ‘Dear friends, do not believe every spirit, but test the spirits to see whether they are from God because many false prophets have gone out into the world.’ 1John 4:1 Our excellent news is that Our Lord promised not to lose any of His Children, given to Him by The Father. We will not fall out or be plucked out of His hands. We need to be wary at all times. For instance there is a false thought encircling the church by more than a few members that misleads them into thinking that responding to an altar call or answering an invitation saved them. When we meet Jesus on that last day He may ask us how we know we are saved? Any answer starting with well I did this or that, any answer with I starting it is a problem. Our choosing Him is an answer to His call, He died for our sins, if not yours He did mine. I know that my sins put Christ on that cross. If there was not any other person who sinned, “we know we all have sinned and fallen short of the glory of God,”” Salvation is found in no one else, for there is no other name under heaven given to mankind by which we may be saved.” We accept the gift understanding all of it, even our answering is from God’s call first.. Planned since the beginning of time. One of the Gospels mysteries, predestination?. Foreknowledge? Mysteries way above my understanding, but true.

Baptism does not save. Rather it bears witness to already believing.

I was six when I was Baptized. At Cross Lutheran Church in Milwaukee. I remember it well, I took it to heart. I felt so special to God, but with questions. Why did my God Parents get to speak on my behalf, to answer the Pastors questions and not me? I was right there! I believe in Jesus why didn’t anyone ask me? So I told them anyway, “Yes I do” I spoke out and everyone around me said “shhhh”.

Note that this verse in Galatians clearly the word Believes comes first. Believing not just in Christ, but Believing Christ. Christ as God, What He says, expects and gives. Christ as your personal Savior, Believing you are a sinner, Believing you need saving! When faith in Christ takes hold Repentance must naturally follow. We all try to at various times to change, give up our bad habits, turn from our sins, at least those we already know of. But we fail. Over and again with good intentions, yet we fail. Years later while reading my Bible and teaching when I could, more questions began to haunt me. The Lutheran Church I had been raised in couldn’t answer them for me. My pastor would sit and talk about these with me for long periods of time without being able to answer. The question above during my Baptism was one of them. Why do they teach that without Baptism you can’t be saved? The thief on the cross didn’t get baptized. Baptism is extremely important but thinking it saves is wrong . There is not one instance of infant baptism found in the Bible. Dedications yes, Baptism when old enough to understand. To have faith, even if as small as a mustard seed. Whole family baptism actually started in the 1700s. Some family members were children, babies so others spoke for them. That does not make it Biblical, it also won’t save you. Also, King Constantine, quite a believer thought it was a good idea to increase the church numbers this way.

WE as believers need to hear Gods call, understand His word and answer for ourselves. A few other weighty questions were a part of the reason my family and I left that Church and found a strict Bible believing teaching non-denominational church group to join. This is not to say they are not wonderful, believers and they certainly led me to the point of wonder and choice. Being Lutheran did not lose me. Even though they do not preach on being born again which created a conundrum for me when I was born again. I didn’t know exactly what was happening to me but I loved whatever it was. Ecstasy, joy I couldn’t shushhh anymore. I asked questions and never stopped. Exactly as Jesus teaches He will find us and call us out from anywhere and everywhere. I was actually on a Jesuit retreat when I heard the call of all places. Being silent, listening and responding to Gods teachings.

The New Birth is required. Jn3:3, “Truly truly, I say to you, unless one is born again he cannot see the Kingdom of God. “ We need a new heart, or we end up believing like Satan and his followers. They all know Jesus exists, they know all about Him and the Bible. But they do not submit to Jesus nor to the Bible. They certainly don’t follow it, quite to the contrary.

Jn 10:27 “My Sheep hear my voice and I know them and they follow me.”Jn10:15 “..even as the Father knows me and I know The Father, and I lay down My life for the sheep.”

God knows who are His or are to be His. The alpha and Omega. He knows our inner workings, our hearts, even how many hairs are on our heads. He prepares us and our souls for Him, Our life experiences, happenings, thoughts, desires are not by happenstance. Jesus calls us, just like He called out to His twelve Apostles. We hear we respond or not. His gift is free all we need to do is accept it. Jn.3:16 “for God so loved the world that He gave His one and only Son, that whoever believes IN HIM shall not perish but have everlasting life.” We follow Him by His Word, by His example even upon conversion. I have yet to meet another convert who does not know when they were converted. Undergoing a heart transplant is hard to miss. The transformation begins and grows in us until the Lord sends for us to be with Him forever. Making us more like Him. Just as in most families there is a resemblance, a trait or characteristic that automatically links you to your parents and family. The same is true of our Father, making us more like Him that there should come a time when all who know us will know of our Christian heritage. Even though we are adopted our mannerisms, habits desires will become more like our new family in Christ. If it doesn’t something is wrong. There are times of failing, we will slip and even fall for a while, but we won’t be comfortable being away from our Father and family for any significant amount of time. We will come back in repentance and faith, calling Abba Father. Sooner than later. A beautiful work in progress. Bearing witness to Christ because we can’t not.

I Am A Zebra!

Hey, your kind a cute……….

A Little Radiculousness in slaying the Monsters Hiding in Our Health Care!

I Am A ZEBRA! yup…..

It really is a thing and Yes, my mental Health Insurance is paid.

Not all Zebras are alike. Despite their appearance, zebras aren’t just black and white.

We, like our Zebra counterpart are sturdy, spirited animals that are a study in contrasts: willful and playful, social and standoffish, resilient and vulnerable. Our life in a herd can be complex, yet we also find safety in numbers. We, both types, Human and Equid can be prey for predators, but are by no means shrinking violets when it comes to defending ourselves. Read between the lines, and you’ll discover that the world of the Zebra is colorful indeed!

Our pastures often include areas one would not normally expect to find Zebras trotting along in. We can be often found in Medical Communities. Where we roam in office buildings, Hospitals, Research facilities or Laboratories. We can often be seen trotting to medical research or medical studies.

There are many varieties of Zebras, all with a variety of Stripes: White with black or black with white? Even some brown intermingled can be found.However, (there had to be a catch, right?), some Zebras are born with genetic variations that make them all black with white stripes, or mostly dark with the striped pattern on just part of their coats. And as it turns out, Zebras have black skin underneath their hair. It depends on how you look at it!

So, why the stripes you ask? They serve as a kind of protection from predators! They are also used for recognition. Our Stripes, our unique differences are not just for graphic design.

When all, especially we human kind zebras are grouped together, per our stripes we are better able to find support. Especially today, thanks to the internet! These Support Groups are vital to our existence. When combined in a group our symptoms ( stripes ) of various kinds make it easier for pharmaceutical companies, Medical Equipment companies and our doctors to hear and see us… Even, to pick out one type of zebra (condition) to follow. Zebra stripes are unique to each individual, and researchers in the field have used Zebras’ individual symptom patterns for identification. While in a herd, we can show our unique needs and strength, gaining recognition that might even lead to treatments for our rare disease or syndrome.

Personally, I belong to a couple of special rare Zebra herds. One with a large stripe down its spine called Arachnoiditis. It runs from the forelock area or Mane (cervical) to the back through the tail. The cauda equina region! The CES which gives many of us significant problems. It is usually caused by a medical error, or TB, and rarely meningitis. Although doctors prefer to say the cause is idiopathic. That Sounds better. Adhesive Arachnoiditis is a miserably painful scarring problem within the spinal canal, so you can just imagine how difficult this is to live with. It is also progressive.

Another herd of these rare Zebras has side stripes that wrap around our heads and ears, the faces often entirely. Called the Trigeminal Neuralgia herd. I can often be found trotting around in there. Softly trotting, since movement aggravates TN. Trigeminal Neuralgia note: If the stripes are fairly equal in size and color on both sides of the head that would be an even rarer subset of this Zebra herd. The bilateral herd., (Mine, wouldn’t you just know it, I have the rarest of the rare disease. (Go figure.)

The Atypical TN herd is quite hard to diagnose and none of the TN herds are easily treated. It is a painful chronic progressive rare disease. Consisting usually of at least the 5th cranial nerve (out of 12) entering from the base of the skull. It’s original name in France was The Tic Douloureux today it is also known as the Suicide Disease. And for good reason!

The herd which is among the rarest yet most likely among the largest is the Microvascular Coronary Disease, also known as the Small Vessel Disease herd.

The reason for this condition to be so rare as I understand it is because our Cardiovascular doctors through their education process were mostly taught and studied with and for men. By men for men. I don’t think it was meant to be that way, but men took for granted the two genders were more alike than we really are. Many, more women die of cardiac issues than men. It kills more women than death from all cancers combined! Well this is the 21st Century and changes are needed.

Recently some very bright informed women began a study about this phenomenon. Called the WISE study. The study was done in Maryland and opened the eyes and minds of the Cardiology professionals to the profound error of leaving women out from the studies and those missing results from text books. The WISE study is going a long way to explain the unique differences in the male and female bodies. Who knew? Apparently not many men. But I digress.

As medical Zebras we have a narrow road to follow. Today we have turned a corner but the road continues to be narrow, so now our path is curvy and narrow.

Since most medical schools that train our doctors train them to assist only the largest most relevant issues and species,(the horse) which is also the most prevalent. For reasons which likely include more $$$ profit, and a larger group of patients to be helped. (I am not at all cynical)lol

Because of all this, when the doctors hear the sounds of a herd or even a single four-legged animal moving toward them that sounds like an animal with hooves, tails swishing. They think horse. Equines and Equids all have similar traits characteristics. But like men and women they are very different.

The training these doctors spent years learning kicks in at the sound out of habit and treatment for the patient is started. But, when these patients don’t get better, the MD or DO or Chiropractor or PA becomes frustrated. Even confused. They try again, with the same poor results. This now is when the relationship between doctor and patient begins to suffer. The patient begins to think this doctor is inept or worse doesn’t care. The doctor assumes the patient is either not taking the treatment, otherwise known as non-compliant, or it’s all in her head. Especially if the patient is a mare! Stallions get a lot more effort as a usual rule.

The doctor, by his patients newly acquired and necessary Patient Advocate (more on that to follow) refers him to the internet sites from the keywords containing the patients symptoms. or hands him/her a file of information on this patients records and testing, Guess what pops up?

Now the doctor can understand what has really been going on. Because he was treating a Zebra and not a horse. .

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Hey Its Just Me!

About me it asks? Yikes…… Well here goes…..I am a passionate and spirited mature woman of faith. Faith in God, My Lord and Savior always comes first in my life. Also, I am a mom, of four. I was a wife 3 times, 2 times widowed. That was rough! Rougher in every way more than I ever thought it would be.! I had no understanding of what the loss of a spouse entails. I was caretaker to each of them until they passed from their medical error catastrophes.. So after the last one passed I decided enough. Not that a companion wouldn’t be nice since always being a fifth wheel is not. But I am done with the idea of any long term relationship . I could not experience that kind of loss again.

I believe God has a purpose for this single oneness He has me in today. So, I will wait as He slowly reveals His plan for me to come. That is just fine with me. I know those plans are going to be interesting and challenging at the very least. I also know good will come from it.

I am also a braggadocious Grand mom, Stepmom, Aunt, Sister, Cousin, and Friend of many. A woman who has much to say about a great deal. An Opinionated INTJ personality. I was born this way so what I can do is try to use the golden rule as often as I can. You don’t know about INTJ’s? That’s easily remedied, google it. There aren’t many of us which I heard from some is a good thing. Ha, it’s all about perception. We are frustrating to be around I am told. Mainly because we are right. About almost anything and unrelenting. Just ask us. It is by MBTI standards the personality called the Mastermind.  So by popular demand, (actually a few friends and family suggested that I write down a few of my experiences, notions, opinions. Certainly not so I wouldn’t drive them all crazy with my thoughts and comments)? Right?

‘Oh For crying out loud’ was born. Born once in 2015 and then, Born again. More Recently. Now it is ‘Oh For Crying Out Loud & it’s Echoes’. I know it’s a long name, but I have trouble with being short. We all have our faults, I am A work in progress.

As the Good Lord has seen to bless my life with many diverse and rare maladies along with a humongous family, really large and in its fullness of unique and rare nutty complex diagnoses. It seemed fitting to share the oft time mountainous climb many of us experienced through our trips and travails of medical errors and not. We learn by sharing, not only things but experiences, knowledge and in doing we help others. We give up privacy and risk ridicule and humiliation, but how else would you know what helps, works, or doesn’t

Well enough about all that……for now. Blessings and hugs to you and I pray you are helped by my little blog, insights, theories, stories and thoughts. Which more will follow soon. The Lord willing.

  Until later……SS . View more posts

Diagnostic Satisfaction ? You’re kidding, right?

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.

sucks2

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.

Sjogrens is an autoimmune disease that attacks all the moisture producing glands and/or moisture anywhere in your body can be found.

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..

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..

Sjogren’s World Sjogren’s Articles Neurologic Aspects of Sjögren’s Syndrome An Update Stewart J. Tepper, MD Clinical Assistant Professor of Medicine, University of Washington, Department of Medicine, Division of Neurology Note: The following article is based on Dr. Tepper’s presentation at the August SSF Conference in Seattle. Although the frequency of nervous system involvement in SS patients is small,(Not as small as they may think I bet) those who have it need good information in order to help, them understand their problems and find good medical care. (True That!) Hence, this important article. * Reprinted with permission of the Sjögren Syndrome Foundation, Inc. (founded 1983) “The Moisture Seekers” Newsletter. Vol.11 No.11, November 1993 pages 1-6 The information that we have about Sjögren’s syndrome involvement of the nervous system is relatively new. It is incomplete, in terms of statistics as to how many people develop neurologic manifestations, how they develop them and what causes each aspect of nervous system involvement. Information is also incomplete in terms of treatment. Frequency of Involvement Areas of Neurologic Involvement Behavioral Manifestations Cognitive Loss Headaches Ocular Manifestations Motor Functions The Brain Stem and Cerebellum Bladder Peripheral Nervous System Muscular Problems Causes of Neurologic Manifestations Evanescence of Symptoms Summary Frequency of Involvement. The first question that we all want answered is, “how often can nervous system involvement occur in Sjögren’s? “We don’t really have good studies to tell us. The nervous system may be involved in as many as 20-30% of patients with primary Sjögren’s, and involvement can occur in brain, spinal cord and nerves. There may be a slightly higher rate of development of nervous system involvement in patients who have the SS-A antibody (anti-Ro). Having an SS-A antibody present can increase the frequency of involvement of a variety of target organs in Sjögren’s. Areas of Neurologic Involvement It appears that neurologic involvement can occur at almost any place in the nervous system. The central nervous system is defined as the brain and spinal cord, and Sjögren’s can involve the brain and spinal cord. It can also involve the spinal fluid around the brain and spinal cord, and it can involve the nerves which leave the brain or which leave the spinal cord and go out into the rest of the body. The cranial nerves are those which leave the brain to go out and serve functions in the skull, and the peripheral nerves go out into the arms and legs and internal organs. Both types of nerves have been described as involved in Sjögren’s. We will start at the top and work our way down. Neurologists always think about anatomy first, when the brain is involved. The top of the brain is where thinking occurs. The lower brain is the automatic portion of the brain or the brain stem, which involves regulating all the autonomic (automatic) functions of the body-breathing and pulse and other automatic functions. Both areas can be involved in Sjögren’s. Within the thinking portion of the brain, both gray and white matter can be involved. The gray matter is the portion of the brain which generates signals, sort of the equivalent of the generating areas in the telephone relay station. The gray matter is where the neuron cell bodies are located. The white matter is the telephone wire, the cables that connect from one area of generating telephone signals to another area of generating signals. So both the wires and the major sections of the brain where thinking is initiated can be affected in Sjögren’s. Behavioral Manifestations Now, if thinking can be affected, then behavior can be affected. Psychiatric manifestations can occur in Sjögren’s and can be overlooked. A doctor who is not thinking about autoimmune disease might miss behavioral alterations, and even with a known diagnosis of Sjögren’s, the doctor might dismiss these as being unrelated to the Sjögren’s when, in fact, they may be a manifestation of structural disease. Thus, the psychiatric symptoms may be the effect of the Sjögren’s on the brain. Sjögren’s patients can have depression, and they can have the opposite of depression and feel a little hyper. They can have anxiety, and they can experience panic attacks. It is interesting to note what has not been described psychiatrically in Sjögren’s – the very profound psychiatric disturbances in which patients really can’t think properly at all- psychosis, schizophrenia and true manic depressive disorders. These psychotic disorders can occur in lupus but have not been described in Sjögren’s. People can get depressed because they have autoimmune disease, and they can get anxious because they have autoimmune disease, so separating out whether something is going on neurologically that can trigger the psychiatric manifestations or whether these are manifestations of the disease itself can be tricky, and testing is necessary to do that. Cognitive Loss Patients can also have trouble with cognitive thinking function. This is separated out from behavior, but once again, the gray matter is involved here, as the brain thinking aspects are involved here. When the patient begins to lose, thinking ability, this is referred to as dementia – the neurologic term. A significant cognitive loss can occur, and this can become a very, very serious problem.’ The kinds of cognitive loss which have been described in Sjögren’s include diminished attention and concentration; changes in language which neurologists can aphasia; difficulty with ‘processing information; disorientation; and trouble with learning and recall. Headaches Headache can occur in Sjögren’s, and in a study by Dr. Gibson in London, who looked at thirty-five patients with primary Sjögren’s in his Sjögren’s clinic, about forty-six percent (46%) met the International Headache Society classification criteria for migraine. It may be that the headaches are a manifestation of the Sjogren’s Ocular Manifestations Visual change can be quite profound in Sjögren’s. The most worrisome visual change that occurs is an inflammation around the eye or behind the eye, called optic neuritis or retrobulbar neuritis. This is treatable, but involves the potential for loss of vision and can be seen in a variety of other neurologic conditions. There is a similarity that sometimes bedevils us between multiple sclerosis and Sjögren’s involvement in the nervous system, and one aspect that makes that differentiation most difficult is involvement of the eye in optic neuritis. Motor Functions Patients with Sjögren’s can also have muscle weakness, paralysis, or complete loss of motor function, and they can have numbness on one side of the body (which is a hemisensory dysfunction) or numbness all over. These symptoms can be from involvement of sensation areas of the brain. When the gray matter is irritated enough, patients can develop epilepsy and frank seizures Once again, one can see how development of these neurologic problems might not immediately make Sjögren’s leap to mind. Should neurologic symptoms develop in a patient who has Sjögren’s, the doctor obviously should consider an involvement of the disease in the nervous system. Occasionally Sjögren’s will be diagnosed because a patient presents with an optic neuritis or a seizure or a cognitive problem or a behavioral problem. A good neurologist thinks about autoimmune disease when these kinds of problems present in anybody. The Brain Stem and Cerebellum Next, we’ll review the automatic sections of the brain and the lower portion of the, brain (the brain stem and cerebellum), involving a variety of functions. The symptoms that have been, described in Sjögren’s include various forms of uncoordination and trouble with walking, various problems with coordinating eye movements, and other kinds of abnormal movements that occur in the, lower portion of the brain. Any automatic function can be affected if the brain stem is involved. Surrounding the brain and spinal cord is spinal fluid. It turns out that the same kind of outpouring of inflammation cells, white cells like lymphocytes, that can occur in the tissue of people with Sjögren’s in the mucous membranes in the mouth, skin, lungs, and kidneys, can also occur in the spinal fluid. This outpouring of lymphocytes and other white cells into the spinal fluid, results in a meningitis A meningitis means that the coverings of the brain and spinal cord are inflamed, generally due to an abnormality within the spinal fluid. Below the level of the brain, there can be spinal cord involvement. Patients can develop abnormalities in arms and legs, and difficulty with walking, called spasticity. Spasticity means involvement of spinal cord or levels above, affecting motor function of arms or legs. Both the motor and sensory aspects of the patient can be involved, either alone or together, so a patient can simply be numb on one side or just have weakness on one side. Bladder If the spinal cord is involved, there is often bladder involvement and there can also be bowel involvement and other changes of automatic function. Bladder involvement in Sjögren’s is often missed. There are a variety of neurologic manifestations of bladder involvement. Sometimes bladder involvement will tip off a doctor that the spinal cord is involved which will then tip off the doctor that there is something else going on. Neurologic bladder involvement can be treated. Peripheral Nervous System Moving out from the brain and spinal cord to the peripheral nerves, remember that peripheral nerves can come out in the skull, called cranial nerves, or they can come out from the spinal cord into the arms or legs. When a nerve is involved, then that particular function may be altered or lost. Cranial nerves involve eye movements and they can involve muscle function of the face. ‘If one half of the face loses its muscle function, this is referred to as Bell’s palsy. Cranial nerve involvement can result in numbness or pain in the face The trigeminal nerve is responsible for facial sensation. A patient can develop “trigeminal neuralgia” which is an inflammation of the Trigeminal nerve. I have seen a patient who had gradual increasing deafness over a year and a half as the nerves which served her hearing on both sides, were involved by the immune process. Any of the cranial nerves of the head can be involved in Sjögren’s. Peripheral nerves going into arms or legs can also be involved in Sjögren’s. This occurred in ten percent (10%) of patients in one large study. Once again, the peripheral nerves are divided into sensation and motor function, and both can be involved, or one or the other. Muscular Problems Muscles can be affected by Sjögren’s. Remember, a neurologist is always thinking anatomically, so we think brain, spinal cord, nerves going out to the body, and muscles at the end. And every single area, as one goes out from the brain to the periphery can be involved in Sjögren’s, together or singly. The muscles themselves, isolated from the nerves that serve them, can be involved. The nerves can be healthy, but the muscles can be directly inflamed by the process of Sjögren’s, causing a myopathy. Symptoms of “myopathy” can include muscle aching and weakness. Causes of Neurologic Manifestations 1) Vascular Involvement The causes of the nervous system abnormalities in Sjögren’s syndrome can be very serious. Hemorrhages can occur. Blood vessels themselves can become inflamed, called vasculitis. When blood vessels are involved, they can close off, and when they close off, the tissue that they serve dies, which is a stroke. So in Sjögren’s syndrome, small strokes can occur, small hemorrhages can occur, blood vessels can become inflamed or abnormal, and can be infiltrated by white cells and lymphocytes. The more severe Sjögren’s nervous system involvement is associated with these kinds of changes. 2) Chemical Changes There is also the possibility that some of the Sjögren’s involvement of the nervous system is not due to stroke or vasculitis, but rather related to waxing and waning chemical changes that can occur. There are clinical reasons for thinking that not all Sjögren’s involvement in the nervous system involves strokes, hemorrhage, vasculitis, and inflammatory changes in white cells, and I will discuss this below. Evanescence of Symptoms Obviously when we see all this long litany of potentially disastrous neurologic problems, we all wish to know the outcome for the patient. Unfortunately, we do not have good data as to what happens with most patients who have neurologic involvement. We do know that although some patients have very serious outcomes in terms of the nervous system involvement, one characteristic of Sjögren’s neurologic symptoms is that they are evanescent. This means that the symptoms can be quite fleeting, quite short, even when they are severe. A symptom can be quite prominent and then gone in a day. A symptom can be present on a weekend and gone on the following Monday, and those of us who take care of Sjögren’s patients have seen this over and over again. That represents both good news and bad news. It’s good news because a lot of these symptoms just simply go away. It’s bad news because it’s very difficult to evaluate treatment for the symptoms because they can disappear whether or not the treatment is given, making it tough to tell whether or not the treatment was responsible for the improvement. Two patients who have weakness or numbness in a limb on a Friday might give two different responses. In one response, the patient sees her doctor, and the rheumatologist or neurologist gives that patient thousands of milligrams of steroids over the weekend, and by Monday the patient looks well. The other patient does not call the doctor, and by Monday, that patient, too, is fine. Then, at the doctor’s visit the next month, the second patient says, “By the way, you know, I had an episode where my right arm went numb and kind of weak and uncoordinated over the weekend a month ago.” Therefore, it becomes difficult to set up studies to determine how to treat patients with evanescent neurologic symptoms. If the symptoms are fleeting, it is also clear we don’t understand why they occur. If a symptom is present on Friday and gone on Monday, it can’t be a stroke, it can’t be a hemorrhage, and it can’t be a blood vessel problem or a vasculitis because the symptoms disappeared in a matter of a day or two. These fleeting symptoms may represent the abnormal functioning of immune chemicals that alter nerve function, and there are a variety of chemicals in the immune system cascade that can interfere with the nerve’s ability to fire or function properly. If those chemicals are slightly kicked up over a weekend, the nerves may not function properly, and by Monday, after the inflammatory process has died down a little bit, the nerve functions perfectly well. It’s like the nerve was drunk for the weekend. If these immune chemicals are a cause for some of the evanescent neurologic problems, then it might be possible to target these chemicals and save patients a lot of worry and grief and more toxic treatment. This gives us the hope, then, that the manipulation of these chemicals could reduce the neurologic symptoms and perhaps prevent their becoming permanent. It is increasingly clear, though, that patients who have vasculitis, stroke, hemorrhage, and anticardiolipin antibody require more significant treatment. We tend to unleash our arsenal to treat very serious, progressive neurologic symptoms to see if we can reverse them and change the course of the disease. We do that with mixed success, so it is important to emphasize the spectrum of neurologic disease. Summary To summarize, at least seventy-five percent (75%) of patients with primary Sjögren’s do not have neurologic symptoms, as best as we can tell. The amount’ of patients with primary Sjögren’s neurologic involvement is somewhere between twenty and thirty percent (20% and 30%). Ten percent (10%) of the patients with primary Sjögren’s have peripheral neuropathy. We don’t know how many have central nervous system involvement versus peripheral nervous system involvement. Symptoms can involve an aspect of neurologic function – brain, spinal fluid, spinal cord, peripheral nerves, cranial nerves and muscle. Remember that symptoms can affect behavior and psychiatric function because they are included as brain and neurologic function. Neurologic symptoms can be permanent and can be very incapacitating and require very aggressive treatment or they can be evanescent. Treatments have been therefore, difficult to evaluate, and good studies for the treatment of neurologic Sjögren’s have not yet been done. SSF Disclaimer * The articles identified as originally published in The Moisture Seekers Newsletter, are the only materials contained in this website that have been reviewed by the Sjogren’s Syndrome Foundation. The SSF in no way endorses any of the medications or treatments mentioned in these articles. We strongly advise that you check any drugs, treatments or products mentioned with your own healthcare provider. Frequency of Involvement / Areas of Neurologic Involvement / Behavioral Manifestations / Cognitive Loss / Headaches / Ocular Manifestations / Motor Functions The Brain Stem and Cerebellum / Bladder / Peripheral Nervous System / Muscular Problems / Causes of Neurologic Manifestations / Evanescence of Symptoms / Summary Copyright 2005 Sjogren’s World Sjogren’s World Home Sjogren’s Syndrome… is a chronic, slowly progressive autoimmune disease that affects the “exocrine” (moisture producing) glands of the body. It is classified as a “connective tissue disease.” Sjogren’s Syndrome causes dry eyes, dry mouth, and it can also affect other major organ systems. Uncommonly, it can affect the central nervous system. Read more here.

Introduce Yourself (Example Post)

This is an example post, originally published as part of Blogging University. Enroll in one of our ten programs, and start your blog right.

You’re going to publish a post today. Don’t worry about how your blog looks. Don’t worry if you haven’t given it a name yet, or you’re feeling overwhelmed. Just click the “New Post” button, and tell us why you’re here.

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Can’t think how to get started? Just write the first thing that pops into your head. Anne Lamott, author of a book on writing we love, says that you need to give yourself permission to write a “crappy first draft”. Anne makes a great point — just start writing, and worry about editing it later.

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