Dinners made...now what?

This week has been a new experience for me.  I have basically been in bed for five days straight now and I am not seeing a change coming anytime soon.  I don't think this has happened since May of 2009 when my Dysautonomia decided to scream "Hey, I am here and you can't ignore me anymore!"

That is the day that I so gracefully passed out in a neighbors front yard while taking a walk with Jedi, my great dane.  Luckily the neighbors called 911, kept Jedi for me when the paramedics took me to the hospital and called Sandy, my daughter, at work to tell her what had happened.  That was the day that changed my life.
 

Syncope, Orthostatic Hypotension, POTS and Dysautonomia were foreign words in my vocabulary.  It had taken years to hear them and right now, along with the words B12 deficiency, they are words that sometimes I wish I had never heard.  But I did, and it's what I have but I have tried so hard to not let any of those words define who I am.  Yes, I faint (syncope) periodically, it started when I was in high school.  I would stand in front of the mirror in the morning curling my hair before school (gotta love the big hair of the 80's) and plop, down I went.

My parents really weren't into going to the doctor so they just told me "Eat something and you'll feel better." and never looked into why I was fainting.

The next time I remember fainting was at my veterinary office.  My dachshund was getting a rabies vaccine and once again, plop, down I went.  That time everyone said, "Are you pregnant?"  I wasn't but I didn't pursue it any further than that.

Then came the heart problems when I was pregnant with my second child.  Every time I stood up my heart rate would jump up to 185-230 beats per minute.  Not good for a developing baby.  That was the first time I heard of POTS (Postural Orthostatic Tacycardia Syndrome). I was told by my doctors to stay in bed til my baby was born, 8 months later, and that it would probably go away after I delivered.....IT DIDN'T.

So the years went by and I pushed POTS to the back burner.  I had kids to raise, learning disabilities to deal with, after school sports to go to, my house to take care of, and then just for the fun of it I decided to throw work into that crazy schedule.  Who had time for POTS????  We found a medication that worked fairly well and I lived with it.  Life was way to busy to deal with illness.

Then in 2009 it all came screeching to a halt that fateful day in May when something called Orthostatic Hypotension reared its ugly head.  I had been warned.  Several of my cardiologists had told me that my POTS could either go away when I reached menopause or go into overload.  It decided on the later choice.  So overload it was.  POTS had suddenly progressed and now included Orthostatic Hypotension (low blood pressure when standing or sitting up that can lead to fainting).  It probably had been there all along with my history of syncope but that we will never know.  No one had caught it til now. 

So that pretty much gets me to where I am today and to the last big word in our vocabulary lesson, Dysautonomia (autonomic dysfunction): A malfunction or several malfunctions of the autonomic nervous system.  You know all those fun little things we take for granted like our heart beating, our blood pressure regulating, the ability to stay warm when cold or cold when warm (temperature regulation), breathing, etc..  Nothing too major just those crazy little things we do to stay alive day in and day out.  Basically my nervous system doesn't work so good anymore and there's not a lot they can do about it.  Apparently the nervous system is a very hard thing to study. 

Since that fateful day in May there have been ups and downs, good days and bad days, more doctor visits and tests then I care to remember but I have always tried to not let this beat me.  Yes it gets me down some days.  Yes it makes me angry that I cannot take my three beautiful granddaughters and walk on the beach with them and teach them the wonder and beauty of tide pools and yes it is hard when Dysautonomia decides to once again scream "Hey, I am here and you can't ignore me!" But Dysautonomia will not win!  We may have to come to some kind of a draw but it won't win.

So today I will stay in bed.  I will consider it a good day, I got dinner made (without passing out, though it was close) and my daughter and her husband will come down and enjoy it with us.  It's not quite as productive as yesterday.  Yesterday I got dinner made and unloaded the dishwasher!  What a feat! But I am still smiling, I am still able to laugh at my crazy giant dogs as they chase each other around the house because we haven't been on our morning walks for almost two weeks (not sure if the house is going to survive 300lbs of giant dogs romping through it much longer but oh well).  Hopefully this isn't a new normal for me.  Hopefully with a little luck and a lot of B12 I will beat this phase of my illness.  If I don't, well then it's just the next phase and we will adjust.  It is amazing the ways that we can find to adjust.  There have been "new normals" at every phase of this and we have adjusted.  In fact there are times I don't even remember all the ways we have had to adjust because it becomes routine.  

So for now I will hang onto my hope that this too shall pass. 

Hang onto my friends because they give me encouragement and something to read and look forward to on Facebook. 

Hang onto my crazy puppies because not only do they give me love and share my days with me they also keep me warm when my body doesn't feel like doing it. 

 But mostly I will hang onto Wil.  He is my Rock, my strength and my life.  He is the

reason that all this craziness is worth it.

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!