Psst! Pass it on: Nine Chronic Illnesses, One Great Source of Support — The Caring Voice Coalition

The Caring Voice Coalition provides support and resources for:

Alpha-1 Antitrypsin Deficiency, Chronic Granulomatous Disorder, Complex Partial Seizures, Congenital Factor XIII Deficiency, Pulmonary Fibrosis,  Huntington’s Disease, Infantile Spasms, Narcolepsy, and Pulmonary Hypertension.

Mission Statement from their website:  Caring Voice Coalition is dedicated to improving the lives of patients with chronic illnesses. Our organization continues to accomplish its mission by offering outreach services that provide financial, emotional and educational support.

And HERE is a great review about them from a great Blogspot Blog called the Wake Up Narcolepsy Blog (Which is a great blog, by the way)

I can speak from personal experience, CaringVoice Coalition  is a wonderful organization, staffed by truly caring folks.  It has definitely been a blessing to me!

Attention NURSES or others with 2 years of medical experience and Associates Degree or higher, I noticed they have a couple of FT positions open in Financial Case Management and Insurance Education/Case Management!  (Richmond, VA area).  Look for Careers on their website. 

See my blogroll for a couple of other great Narcolepsy and sleep-related blogs.

Another Narcolepsy Night(mare)

But Praise the Lord, we survived it.

So!  Last night I went to bed at 10.  I put on all my various implements of sleep,  (See my post “How Are You Really?”) and settled in for what I hoped would be a pretty quiet night.  But instead, I immediately began experiencing stomach problems.  This is one of the new symptoms that happens from time to time, for which so far I have no explanation.  I get a burning in my stomach, and the heat rises up along my esophagus, and then my nose and face and eyes burn like I’m having a serious histamine reaction and I do have some difficulty breathing as well.  I feel like I’m dry-heaving both ways and an extreme weakness hits.  (Whether this weakness is my cataplexy or a feature of this GI reaction, I know not, but if it’s the cataplexy, I sure have a lot of triggers).  Well if all of that doesn’t sound fun enough,  try doing it with the medication in your system..  The one designed to force you into the deep stages of sleep that your body is unable to reach on its own.  I spent a good portion of that time on the bathroom floor, sometimes coherent, sometimes not.  After about 2 hours of this, my husband attending to me the whole time, I finally stumble back into bed about 12:15, put all my gear back on, and promptly throw up.  (Blessed relief!)

When I don’t get to sleep early, the medicine does a strange thing.  Whatever time is shaved off the front end of the night, it tends to shave a proportional amount off the morning and I am awake before dawn.  Needless to say I am feeling a little rough around the edges this morning.  But onward we go.  Between nausea, aching joints, weakness and reduced stamina, I am beginning to question whether I need to be more aggressive with the doctors, maybe even check my house for environmental toxins, but with what energy am I to do that?  I am still not over the years-long fight it took just to get the narcolepsy diagnosed.

Healthcare today is so specialized, the “body of knowledge” so vast, that any doctor who is the top in his field, has only room in his brain for that specialty, and more and more we are being examined and evaluated in pieces and slices.  It is a lot of work to get any doctor to see me as a whole.  And when they do, they see a trail of multiple diagnoses, none of which were desired or selected by me by the way, and they either seem to conclude I am not entitled to one more, or that I go around collecting them for sport.  Either way I can’t help feeling my concerns are being taken a little too lightly.  Here is the pattern:  See a doctor, he runs a battery of tests.  They all come back “essentially normal”, so we know a bunch of things that are not wrong, but still not what is.  But to them, their work is done, so ”run along, now, off you go!” (Though if he can’t help me, I  guess it’s just as well I do move on).   I suppose if  a doctor sees 12 patients a day in the shape I’m in, he or she may pretty much have to dial back or turn off their ”carer” entirely, in order to keep doing what they do.  (Back when I left nursing the sheer magnitude of people’s suffering was already tearing me up but I refused to stop caring).  I don’t hold it against them, really, but from my side of the bedrails there is no question it doesn’t make for an easy road getting help and answers when something is clearly wrong.

I am very grateful to be able to say that the Lord sent me a couple of medical office workers who have taken the time to encourage me.  Right out of the blue, too.  Like they knew my case and were totally aware of my struggle, and maybe they are in a general sense.  Here is a disturbing thought:  Maybe it’s such a common scenario, patients with mysterious symptoms and unexplained illnesses, that they have felt the need to become cheerleaders.  They know the docs and that they actually do care and are doing the best they can.  And they know the patient is sick and fighting for their quality of life, or possibly even for life itself. ( Not sure which one it is for me just yet but certainly time will tell).

Ultimately I know that my quality of life, and my life itself, are not in the hands of those doctors, but in the hands of a wise God.  And so I go to Him.  With my frustrations and my perplexity.  I go to Him to keep my attitude adjusted because I don’t do so well with that on my own, and certainly going to the doctors with a chip on my shoulder would be counterproductive.  Not to mention the effect on those who have to live with me.  I go to the Word and I do a lot of praying.  That’s what keeps me going.

I am grateful to the Lord for the solace I have found in the blogging community.  Hat-tip to fellow narcolepsy sufferers (like Queen of Sleep, Strides Against Narcolepsy, Julie’s Narcolepsy World), and  Fellow Chronic-Fatiguers, (CFS-Life in a Small Space and Wife of a CFS sufferer) as well as fellow believers who post solid teaching from the Word  like Rus Howard over at “Daily Bread Crumbs”and Clint Lewey over at “Counsel of a Friend” and “Chief of the Least”,  ”DefendingContending”, “Laconic Commentator”,  or the many who just use their wonderful gifts to reflect Jesus or spread joy to a needy world: ”Caddo Veil” and ”All that Makes You”  and others (all in my blogroll).

If we go to Him for it, the Lord will always send what we need to get by.  Always!  And for that, I am truly grateful.

To God be the glory!

Narcolepsy and Cataplexy

The National Institutes of Neurological Disorders and Stroke defines Narcolepsy as: “a chronic disorder of the central nervous system characterized by the brain’s inability to control sleep-wake cycles”.  On average it takes 10 years for a person to be diagnosed after the onset of symptoms.  Sleep medicine is still a relatively new field.  About one in 3000 Americans suffer from Narcolepsy.  About 70% of those who have narcolepsy, also suffer from a condition called cataplexy, which is a sudden and transient loss of muscle tone which causes a feeling of weakness, and loss of voluntary muscle control.   Cataplexy is relatively rare, occurring in fewer than 5 out of every 10,000 people.  It occurs only in narcolepsy (except for a temporary ” mimicking version” which can occur in sudden withdrawal of Serum Serotonin Reuptake Inhibitors).   Narcolepsy with Cataplexy is almost always due to lack of a substance called hypocretin in the brains of those effected.  No hypocretin = no sleep-regulation ability, therefore there is essentially no clear boundary between the sleep and wake states.  Narcoleptics often enter partial wake states when they are sleeping, and enter partial or full (intrusive) sleep states when they are awake.  Intrusive sleep attacks can be as brief as a few seconds to a full-out unwelcome and unplanned “nap”  My initial “micro-sleeps” really freaked me out because I was aware of “gaps” in a conversation or visually in something I was looking at.

As a nurse, my various diagnoses did not satisfactorily explain all of my symptoms.  Chronic fatigue syndrome is real, but for me, the label was not enough.  I needed to know why I was tired all the time.  Sleep apnea was diagnosed, and treated, but the fatigue was still  there.  I was diagnosed with Fibromyalgia, due to all the trigger points and pain, but I still believed there was more to the puzzle.   Then the episodes of sudden weakness began.   I was disabled from Nursing in 2000 but continued to attempt to work anytime I was able.  In 05 I was working as a school nurse, and the Inclusion (special ed) teacher was always picking my brain about things going on with her kids.  One day she described how one student seemed to fall asleep “at the drop of a hat” and asked me if I thought he might have narcolepsy.  As a nurse, I thought I had a pretty good idea of what Narcolepsy was, everyone thinks of it as “that sleeping disorder”.  But I told her I would do a little research and get back to her.  It was then that I learned about Cataplexy which described precisely the unexplained “spells” I had been having.  Doctors could not seem to get it through their heads that I did not lose consciousness during these episodes, and since EEGs had been normal, and the neurologist felt that what I was describing did not fit with seizure disorder either.   When I was convinced that what I was dealing with was Narcolepsy with Cataplexy, I went to a neurologist with my concerns and her exact response was laughter, followed by “you don’t get to come in here and tell me what you think you have.  I am the doctor, I will determine that”.   The trauma of the unexplained and alarming symptoms paled in comparison to the trauma of the fight involved in getting diagnosed.  I have notes from ER visits where I have circled things the doctors wrote, which I did not say, because their “field of vision” was so narrowed by their specialty, that they did not even hear what I actually said.  Unbelievable!  Had I not been a nurse, I dare say I still would not have been properly and officially diagnosed, and would still be untreated.

After extensive (and I could have told them-unnecessary) cardiac workup, and neuro workup,  one neurologist eventually suggested that I see a shrink.  By this time I was so severely sleep-deprived that I was indeed having severe and rapidly  changing mood swings and bizarre and unexplained sensory experiences, including a couple of auditory hallucinations, and was diagnosed Bipolar I.  People in my life who know what I went through, say it is amazing that I was able to keep the presence of mind to keep advocating for myself until I found a doctor who would listen.  There were huge chunks of my kids babyhood and toddlerhood that I could not even recall, until after I started getting better.  I found the memories had been made, but my mind so dis-ordered at the time, that it took watching the baby videos and reading their baby journals (good thing I’m a writer) to begin to retrieve the memories of those fog-filled years.   By the time I was diagnosed, I had been sick for 12 years.  It took 5 years from the time I had figured out that I had narcolepsy with cataplexy, to find a physician capable of and willing to evaluate me for it.  By then I had a stack of records 3 inches thick, including many pages of journal notes in which I had documented my symptoms and experiences and was frankly getting very near the end of my rope.  When this doctor got around to the part of his assessment having to do with my psychological state, I became silent and he looked up.  My husband was with me.  The doctor asked me if I had thoughts of harming myself.  When I finally spoke, I told him that it was not that I did not want to live, but that I had lost all hope of ever having any quality of life again because none of the many doctors I had been to was listening.  I told him about my stack of notes.   I told him that I was a nurse and I had documented everything but no one was really looking at it.  And do you know that doctor said “bring it to me, I will look at it”.  And he did.  He also hugged me and said “we are going to help you”.

He did yet another sleep study, my 5th, followed by the MSLT test immediately on the next day after the overnight study, and then I didn’t hear from him for several days.  When he finally called me, he said “your brain waves are extremely chaotic and very difficult to read”.  I said “try living with them”  He laughed and told me that he had indeed established the diagnosis of narcolepsy with cataplexy.  He applauded my determination and implemented treatment which literally saved my life.  I am very certain that I would have probably gone on to have a heart attack or stroke, or a complete psychotic break, had help not arrive when it did.  And curiously enough, my fibromyalgia pain nearly disappeared completely, my weight began to gradually decrease, and my moods leveled to such a degree that I have not required bipolar meds any more since the diagnosis in late 2007.   Don’t get me wrong.  I still live with these conditions.  As I age, the fibro symptoms have returned, weight is always a battle, and fatigue and sleepiness are ongoing.  And when circumstances are stressful, or I’ve had a long run of being sick or not sleeping well, mood issues will crop back up.  But when the issues are addressed, and/or some tweaking is done to my medication, as long as I am vigilant, we can generally get me back on an even keel.  Still my life is an ongoing rollercoaster of improvements and exacerbations that require constant effort to manage.  Now I have also developed some neuropathy and there has been a change in the quality of the episodic weakness that concerned my sleep doc enough to send me back to the neuro specialist.  Like any condition, I am sure there are plenty of things about narcolepsy which science and medicine have yet to discover.  With all that my body has been through, I am not very surprised at any of the odd and unexplained things that happen.  I have learned to trust my own intuition even when the doctors are alarmed about something because when your entire sleep apparatus is out of wack, all your other systems are bound to suffer.

I have had to really learn how to say no, and get over worrying about what people think of me when I do, or what they think of me when I do say yes, and then have to reneg.  After a while, you just get tired of apologizing.  I do the best I can and let the rest go.

For anyone interested in learning more, I encourage you to do a google search and read up on narcolepsy and cataplexy because I believe it is much more common than the official numbers show.  And I believe that sleep disorders underlie many medical conditions, completely ignored and undetected in some people for their entire lifetime.   Insurance companies would do well to require everyone to have a sleep study at some point.  I think it would save them money in the long run.  But that’s just the opinion of a nurse who has narcolepsy.  No credentials there. (Ha!)

I had a hard time even finding a book on the subject of Narcolepsy, but the best one I did find was “Narcalepsy A Funny Disorder That’s No Laughing Matter” by Marguerite Jones Utley (1995).  I was able to e-mail her and order the book.  We exchanged e-mails a couple of times, and then I lost touch but I will ever be grateful to her for writing that little book.  I recommend it to anyone who has Narcolepsy, thinks they have Narcolepsy, has a loved one with Narcolepsy and every doctor and nurse should read it.  It is available to order from M. J. Utley, P.O. Box 1923, DeSoto, TX, 75123-1923

If you read my previous post entitled “Positivity” this post gives you some of the missing background which explains where I was coming from when I wrote it.  I do not intend to use this blog as a place to rant, but there are some things that just need to be said sometimes.