Boredom....what's a girl to do???

Okay, so it hasn't gotten that bad yet, but some days I am close! 

One of the worst parts have having Dysautonomia is the fact that you pretty much have to spend your days alone.  While everyone else goes off to their jobs, to school, to the gym, or where ever it is healthy people go, you begin to forget where that is, you are the lucky one who gets to stay home.  And not just home but more than likely unless it is a very good day, you get to stay in bed or in the recliner so that your blood pressure stays where it belongs.  

Sounds like fun huh??? NOT!  To all those people who say, "You are so lucky that you don't have to work anymore."  I say, well I probably shouldn't put down on a this blog what I would like to say, so I just roll my eyes and smile.  Believe me you hear it all when you have had this for awhile.  There is another blog that I follow regularly called Just Mildly Medicated and she has talked about all the stupid things people say to you when you have a chronic illness.  Here's the link if you need a good laugh: http://justmildlymedicated.com/5-things-to-think-about-before-saying-to-someone-with-a-chronic-illness-especially-if-you-are-an-ass/.

Well then what is a person to do?  I am pretty good when it comes to amusing myself, at least on most days.  If you follow me on my Facebook page you know that I have those wonderful self pity days when I just don't want to do anything.  I try my best to keep the "Oh woe is me attitude" at bay most days.  Anyone who deals with a chronic illness will attest to having these days.  They aren't fun and you can't give into them, but some days you just want to.  I know that, at least for me, those days were a lot more frequent in the beginning of my illness.  

What do I do to pass the time between 5am when Wil leaves for work and 5pm when he gets home?  Well lots, on good days I get laundry done or the dishwasher unloaded.  On really good days I get a few household chores done and cook dinner.  On very good days, which are fewer and farther in-between recently, I get out of the house.  I am still crazy enough to drive very short distances.  No more freeway driving, I haven't done that for a couple of years now and only two or three miles from home, but on very good days I can still run away from home.  On those days you will probably find me at Opportunity House, our local thrift store, wheeling my way through the isles in search of wonderful treasures.  Up until last month when my health took a huge dump I use to run an online toy store called Island of Misfit Toys.  I got most of my inventory from Opportunity House so they know me there, they know about my Dysautonomia, they know what to do if I crap out on them in the store so it is a safe, friendly and comfortable place for me to go.  However when you have Dysautonomia your trips are usually limited to no more than 15 to 30 minutes, as are household chores and that doesn't take up a lot of time when you have 12 hours to burn. So what's a girl to do????

Well, I write.  I love to write.  Am I good at it? I don't know, I did have a publisher interested in one of my books, so I guess I am okay.  Do I enjoy it? Absolutely and when you have something like this you have to find things that you love to do and do them regularly so that you can stay somewhat sane.   So I write, I write on Facebook, I write my blog, I have a couple of books that I have been working on forever that will probably never go anywhere but hey it gives me something to do to pass the time.  I use to be a reader.  I loved to read but then I found the ever addicting art of writing and I haven't looked back. 

Of course when you are alone twelve hours a day, five days a week even writing can get monotonous. That is when I find myself very thankful for having a chronic illness in the computer age.  I would be lost without my computer.  If I didn't live in the computer age I would still be able to write, I believe there's still a funny thing called pen and paper available out there, but otherwise I would be lost.  To say that I dislike daytime television would be an understatement.  Yeah I want to sit around all day long and watch commercials designed just for those of us who can't work.  There's the "Injury hotline" commercials, the "Hey we can retrain you for a job" commercials ( I don't need retraining my autonomic nervous system does.  How come there isn't a commercial for that?), there are the ever famous "We can get you social security now!" commercials and then there are my all time favorites, the prescription medicine commercials.  Yes, I want to sit at home and listen to all the side effects of medication to solve your menopausal vaginal dryness (sorry folks that one really just doesn't belong on TV!)  Who wants to take medication that may make you lightheaded and dizzy, may cause mood swings, could lower blood pressure or better yet may cause an erection lasting four hours!!! I know I don't because except for the erection I already have all those symptoms.  Okay I will get off my rant now, but really does anyone want to listen to those?  So I have sworn off daytime and most of night time television as well.  Watch the video below and you just may swear it off too!  No really watch it, it is hilarious!

Okay, now that I am off my rant back to the point I was trying to make.  Why am I so thankful to live in the computer age.  Well first of all I would never have survived being ill in the middle to dark ages, the victorian era or even the later 1800's.  I just cant see writing my stories on a slate with a hammer, on a piece of cloth with charcoal or even by candle or firelight on paper while dipping my pen into an ink well.  I need my computer, I love my computer, my computer is my life twelve hours a day.  It's a diary (this blog), my social life (facebook), my way to vist friends and family when I can't get to them (skype) and my entertainment (video games, movies, newspaper, magazine and even a good book if I ever get back to reading).  If I didn't live in the computer age it would be hard to keep up socially, since most of my friends and family still work and can't be here to entertain me during the day.  If I didn't have my computer I would never have time to visit my grandchildren (Alaska is awful far away for a day trip and with my health even traveling there is getting difficult.) and if I didn't have my computer I wouldn't be able to play my hidden object and word games.  Without the computer age I would be stuck in my house alone playing solitaire, okay maybe not by firelight....but that is just not my idea of fun!

I guess the point I am trying to make is if you find yourself in a situation like this, whether it be short term or long term, try your best to keep yourself busy.  Find things that interest you, find things that give you enjoyment.  It will be hard at first, there will probably be a lot more "Oh woe is me." days than "Yes I can do this!" days and that is okay.  Eventually the "Yes I can!" days will win out and when you are dealing with a chronic illness every little bit of enjoyment that you can find, no matter what it is can help.....even if it is watching those irritating prescription commercials.

THRIVE?????????

UHHHH NOT!!!!!! THANKS KAISER!

OKAY MAJOR RANT TODAY!!!!!

 If you aren't in the mood for major bitching this isn't the right place for you....however, if you want a real eye opener you have to read this!!!

Since November of last year my health has steadily gone down hill.  A lot of new symptoms and an increase in my normal symptoms.  Up until then I had been pretty much holding my own for the last few years.  Things were bad but not getting worse.  Then came November, my jerking intensified from nights and occasional days to anytime that I was sitting down relaxing.  My memory loss and concentration level was getting more and more obvious, sleep became next to impossible even with my sleeping pills, generalized weakness in my arms and legs was becoming a regular thing and the fatigue was unbelievable.

So I put together a list for the chief of Neurology at Kaiser Vallejo and hoped to find an answer to what all these symptoms may have in common if anything.
Here is the list that I gave the Neurologist:
Myocolonic Jerks
Memory Deficits
Concentration Deficits
Blurred Vision even with corrective lenses
Orthostatic Hypotension
Inability to regulate body temperature
Hypoglycemia
Intermittent weakness in arms and legs
Lack of Hand Coordination
Insomnia with sleeping pills
Fatigue
Lack of Sweating
Pain in hands

Like the picture above my could all my symptoms be connected together by one common thread.

The visit with the Neurologist went well (I thought) and he agreed to do an MRI.  He also said that he felt that I was suffering from brain damage but that he did not know what the cause was, possibly my Orthostatic Hypotension or my Hypoglycemia may be causing it but he wasn't sure.  He didn't believe the damage would be reversible regardless of what caused it and sent me on my way.  Never once did he acknowledge that any of these symptoms could be related to the other or that they could be linked by one common thread.  

I had the MRI and it didn't show any significant changes from my last one. The conclusion was Idiopathic brain damage, meaning brain damage from an unknown source.  Over the past few weeks though things have worsened.  I had tried everything that the Neurologist said to try but things were still getting worse.  The chronic fatigue has gotten so bad that for the last two weeks I have pretty much stayed in bed most days.  Or I have taken several naps throughout the day just to try and function.  It was time to get to the bottom of why my symptoms were worsening so rapidly and nothing Kaiser was doing seemed to work.  So I decided that I would seek out the advice of an Autonomic Nervous System Disorder specialist at Stanford Medical Center and set out to get my approval from Kaiser for an outside visit.

My Doctor's favorite diagnosis site.

I made an appointment with my GP who I have to say is the  nicest person you could ever meet.  He is friendly, sympathetic, takes time to listen, is super easy to get in to see and always responds quickly to emails but I would have to say he is probably the WORST doctor I have ever had!  His idea of solving any illness is to jump on WEBMD, look up symptoms and share the webpage with you!  I actually gave him the list of symptoms and he stated, "We can't go over all of these in one visit, so choose which one you want to work on for this visit and we can work on the others later."
REALLY!!!! People these are all connected, we are suppose to find the link!  I am sorry that WebMD doesn't have an area to list multiple items into one search engine but we need to look at this from a "Hey are these all connected?" point of view.

UH YEAH!!! But not with Kaiser this time!

Okay, I know, time to find a new doctor.  But honestly when you have Kaiser you don't have a lot of great choices when it comes to GP's and at least I know what to expect from my doctor and am comfortable with him.  Is that really what I should be looking for in a doctor?  Probably not, is it time to change, probably but really is there anyone better out there and how many years would it take to find one at Kaiser......probably a lot more than I even have the strength to get through so there may be some decisions to make during open enrollment season!

I do believe that the right environment is NOT at KAISER!

Now that I have given you a little background on the situation let me explain why I am so angry at good ol' Kaiser Permanente.  During all this craziness I have been talking to a gastric bypass dietician at Kaiser Richmond.  She is helping me to get my hypoglycemia under control which is actually not related to any of my other problems.  It is a side effect from the gastric bypass that is becoming more an more evident as more people opt to have this surgery...if you are considering it PLEASE DON'T!!!!! The side effects are not worth the ease in weight loss.  Anyway the dietician has been keeping an eye on my vitamin levels and working with me to raise them and thanks to her I have been pretty successful. 

You think a Neurologist would know this!!!!!

Yesterday I had a recheck on my vitamin levels.  This morning I got an urgent email from her stating that my B12 levels are way too low and that we have to get them up ASAP.  Now realize this woman has no idea all the problems that I am having with my autonomic nervous system.  Concerned at her concern I decide to look up the symptoms of B12 deficiency on the internet.  Heck it's what my doctor at Kaiser does so I could just save myself a visit!  Here is what I found out.  The symptoms for low B12 levels are as follows......I will put a star next to each of the items that are on my list that I gave to my Neurologist and my GP.

B12 Deficiency symptoms:

Weakness *

Fatigue *

Change in mental status *

Confusion *

Loss of balance *

Memory deficits *

In-proper circulation *

Muscle weakness *

Dizziness *

Vision Problems *

Pain in hands or feet *

Paranoia

Swollen tongue

HEY LOOK!!!! There's two symptoms that I don't have!!!!  Well I probably am going to get a little paranoid now that I know that the chief Neurologist at Kaiser can't put two and two together!

So riddle me this Batman....if you have a patient that you know has had gastric bypass, that you have seen their labs for the last three years, that has had low end B12 levels on those blood tests and this person hands you a list of problems that basically screams LOW B12 LEVELS!!! How do you miss that???? I am not a calm person right about now!  We are talking about a series of nervous system problems caused by low B12 that if not found and reversed within six months will probably become non reversible and it took over three years and a dietician at Kaiser to discover this??? REALLY????  Well I guess he got the non reversible brain damage part right.

And exactly what does Kaiser mean by Thrive????

THRIVE??? Does anyone here know the antonym for Thrive???? Yep that's right it's FAIL with a big fat capital F!  And that is exactly what Kaiser has done.  They have Failed.

 

And that Kaiser Permanente is your grade when it comes to helping your patients THRIVE.

Where do I go from here?  Well first I start major B12 injections to get my levels up.  Then I get to see what symptoms are and are not going to improve with my B12 being so low for so long.  Next I will probably still seek out the Autonomic Nervous System specialist at Stanford so that I have seen a doctor that I believe in.  Then, if and when I am feeling better, Kaiser and I are going to have a LONG, HEATED talk about THRIVING!

The Meaning behind the new blog title.....

I AM A JERK..........Now I know what you are thinking: no you aren't, don't say that about yourself, why do you think that.  Well it's not what I think, it's what I do.  I jerk.  I jerk when I relax, I jerk when I watch TV,  I jerk when I am in bed, I have even been known to jerk while in restaurants and throw my food across the table.  I AM A JERK.  

Believe me this is not something I strive to be, it is just something that happened.  One day, well actually one night, I started to jerk.  Nothing bad, a little twitch in my arm now and then.  Nothing I couldn't deal with.  Then it began to progress.  A larger twitch, more twitching each night then one night the twitches became full out jerks! You know the type you get when you first fall asleep and startle and wake yourself up?  That's what I was doing but I wasn't falling asleep, I was fully awake.  Over time the jerks went from every so often at night to several times a week, eventually they progressed to every night, then from every night into day time also and then to where I am now.  Any time I relax I jerk.  

                                            Here let me give you a little idea of my jerking.

 

So jerking has kind of become second nature in this house.  Wil has learned to live with it, even sleep through it.  He has become quite the jokester about it and now refers to me as his "Jerk".  So I figured if this is a blog about my life with autonomic dysfunction well I might as well call it as I see it.  I am a jerk!  Wil's jerk to be exact and that is just fine with me.  Well maybe not having to deal with the actual jerking part but being called a jerk is okay. 

So why do I jerk?  Well it is called myoclonus and I am just lucky enough to have it as part of my autonomic nervous system disorder.  Can they fix it?  No.  Can they treat it?  Maybe.  Do I want to take the kind of medications it takes to treat it?  Probably not.  The lead medications used to treat myoclonus are Clonazepam which causes loss of coordination and fatigue and has to be given at a fairly high doseage or the other choice is barbiturates which can treat it, but once again, you probably don't want to deal with the numerous side effects associated with these meds.  Basically my choices are I can live with the jerking or take medications for it that cause fatigue, dizziness, loss of coordination, and would cause a tranquilizing effect to where I would live my life in more of a fog than I already do.  Well the last time I checked I am already suffering from dizziness, lack of coordination, and chronic fatigue from the Dysautonomia so taking medications that would just add to these symptoms seems a little crazy to me. If there is one thing I have found over the last few years of living with trials of different medications it is that sometimes the cure is worse than the cause so I think for now I will just continue to be a jerk. 

So there you have it.  My story on why I am and will continue to be a jerk.  I guess the bright side is I actually have an excuse for being one!

If you would like more information on Dysautonomia or Myoclonus you can check out the following sites:

Dysautonomia:  http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

Myoclonus:  http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm