Dysautonomia (Dys) and The Walking Dead.....

I am a Walking Dead fan and I am quite proud to say that.  Yes, I have been sucked into the whole Zombie Apocalypse scenario and I don't plan to leave for quite a long time.  Oh I admit that with having Dys I don't have a chance in h*ll of surviving it.  In fact most days I would probably feel better if I were actually a zombie, at least most of them are still upright and wandering around, but that is not the point I am trying to make here.

There is a show on each Sunday right after The Walking Dead.  It is called The Talking Dead and usually features an actor or a couple of actors or staff from The Walking Dead and a guest star.  On the show they discuss that night's episode and what happened in it.  Last night's episode was called "Alone" and focused mainly on Maggie, Sasha and Bob.  It also had Daryl and Beth in the storyline and I was very excited to see where that part of the story was headed but then the writers crushed all of our hopes when Beth was taken and Daryl couldn't find her. Noooo!  That was just mean!!!
Anyway back to The Talking Dead.
Last night's guest were Maggie (Lauren Cohan) and Sasha (Sonequa Martin-Green).  Durning the show one of the guests asked Sonequa what human characteristic a person would need to best survive the zombie apocalypse.  Her answer was Hope.  Now let me say, up until last night I honestly never compared having Dys with surviving the zombie apocalypse, but Sonequa's answer really got me thinking.  There is definitely something that the characters from The Walking Dead and people with a chronic illness have in common. They both need to have hope to survive.

Hope is the one thing that gets us through the day.  Just like in the walking dead, people with a chronic illness need to believe things will get better.  Like how Maggie hopes to see her husband Glenn again one day.  That hope keeps her strong, it keeps her going when things get rough.  Without that hope Maggie and Glenn would probably give up and in the zombie apocalypse, as well as in life when facing a chronic illness, giving up is the worst thing you can do.

There are other things that The Walking Dead can teach those of us with a chronic illness.  We need people with a positive attitude around us to keep us filled with hope when life gets to be too much for us to handle on our own.  In The Walking Dead the group had Herschel.  Herschel was the one person who provided them with faith, hope, and a level head when things got so bad that they just wanted to quit. He was always there with a story, a sermon or just a good old positive speech to keep the group grounded.  We all need a person like Herschel in our lives when dealing with things that bring us down.  Even now that Herschel is gone it is the lessons that he taught them that keeps them going.  I think we can all come up with one person in our lives, whether they are still with us or not, whose strength and positivity we can lean on.

The Walking Dead has shown us that a group is stronger than any one individual, except maybe Michoone, can be.  Sometimes we can't do this alone.  We need the support and strength of others to survive.  There is strength and hope in numbers and if we stick together we can get things done.  In other words don't go it alone.  Join a support group, find others going through what you are going through and lean on them.  Get involved in spreading the word about what it is you are going through so that others going through similar situations can gain knowledge from you.  Get the people you care about together and keep them close.  It's easier when you don't have to do this alone.

And of course the most important lesson we can learn from The Walking Dead is FIGHT! Never give up.  No matter how bad the situation seems, no matter how much you want to give up, keep fighting.  You don't know how strong you actually are until you are faced with a bad situation.  So pick up your weapon of choice, mine is a computer, and fight the toughest fight of your life. You may just find that it really is HOPE that keeps you going through thick and thin......oh and maybe a little Daryl Dixon wouldn't hurt either!

How to beat the Weekend Blues.....

I think this is a first for me since I became ill.  I am blogging on a Saturday.  Why?  Because this darn stuck on the couch mode just won't give in.

Wil and I have always been a team.  When he isn't at work it is our time and we spend it together.  It has always been that way, even before I was diagnosed with "Dys" (Dysautonomia).  For the last 33 years we have spent our weekends together.  Yes there have been exceptions to the rule but usually on the weekends we are always together.

Today however may be the beginning of a new "phase" in our lives.  Today Wil is outside doing things and I am inside watching him from the couch and that really sucks!  He has things that need to be done, dog pens to clean, lawns to mow, cars to wash.  Things that I use to help him with that I no longer can.  On top of that I haven't been able to help much with the inside chores this week so he is also doing laundry and getting the house straightened up for me later.  I tried to go out and sit with him for awhile but good ol' Dys doesn't want me to.  So this weekend I am down for the count and just hoping that it isn't for long.

Writing a blog post when you are feeling blue is probably not the best idea.  It would usually turn out to be an "Oh woe is me." type of post but I am not going to let that happen.  Today I am going to concentrate on the ten most positive things in my life and share them with you.  So no Dys, you and the weekend blues aren't going to win this one. 

HERE'S MY LIST:

 10. MY HEALTH:
Didn't you just know I would throw another "KEEP CALM" saying in there! Can I actually write a post without one?  Probably not.  But it is true.  Things could be a lot worse.  I can see (blindness has always been my greatest fear, even before all this began), I can hear, I can breathe, taste, swallow, walk (sometimes), and communicate.  I am well enough to write my blog, to go on short outings, to play with my puppies and talk to my granddaughters.  I am blessed and nothing, not Dys or anything else will take away my joy at still being able to do these things.




9. THE OCEAN:
What can I say, give me a bad day, a terrible week or even a horrible month, just take me to the ocean and it all washes away.  The sound of the surf, the smell of the salt water, the feel of the sand between my toes and the incredible memories of all the times I have spent at the ocean will turn any bad situation into a good one.  Hmm, I think I see a day trip not to far in my future.

8. MY COMPUTER:
Without it I would be lost.  My computer keeps me in touch with my friends, it lets me do things like, shopping and finances, that I otherwise could no longer do, it lets me talk to my granddaughters, it plays games with me, it is a memory keeper of all the great times in my life that I can look at through pictures and it allows me to escape into my blog and share it with others.




 

7. OUR SUPER SILLY PUPPY LEIA:
Wow what can I say about this girl.  For those of you who know her you know what I mean.  This crazy girl fills our lives with unbelievable love and humor.  She is always on the go, constantly being goofy and if you don't want a wet face from giant Dane kisses you better not come to my house.  I never thought I could love another Great Dane as much as I love Jedi until Leia's goofy love entered our lives and stole my heart. 

6. MY BIG GUY JEDI:
He is my best friend, my constant companion and my shadow.  There will never be another dog like Jedi.  For eight years he has shared my ups and my downs with me.  He fills my days with companionship and loyalty.  He fills my house with slobber and drool and I wouldn't have it any other way.  I love this dog more than any other animal that has ever been in my life.

5. MY CHILDREN:
The greatest achievements of my life are my children.  My son Nick, my daughter Sandy, and my daughter-in-law Amy.  They have all grown into incredible adults full of love and strength of character.  I cannot be prouder of these three incredible redheads and who they are.  You all fill my life with so much joy.  Thank you!!!

4. HANNAH MAY:
My third granddaughter.  This little girl is a thinker so you better watch out.  She maybe the littlest but she is the toughest.  Always one step ahead of her mom and dad.  You never know what this little girl may be up to but that's what makes her so much fun.  I wish Nick and Amy hadn't gotten stationed so far away because just as Hannah was becoming her own little person they had to leave but thankfully Skype keeps us together and enables me to watch her grow into such an amazing little person.

3. SAMANTHA LYNNE:
My second granddaughter.  She's our class clown.  She's a joker and a lover.  She is always goofing around.  I could see this little girl in Hollywood someday!  Sometimes she gets quiet and lost in the shadow of her sisters but she is fearless and will try anything.  She's my Sam Bam and I love and miss her so much.

2. EMILY ELIZABETH:
My first granddaughter.  I don't know if it's cus she's my first or because she loves me so much but this little girl is my world.  I call her mini-me because just like me she can to be rough and tumble and goofy but there is a soft side to her that makes her the emotional one of the three.  When they moved away they took half my heart with them.  Luckily like the loving girl she is she left me her favorite stuffed elephant so when I miss her too much I have a part of her to hug.




1.  WILLIAM BIZJAK:
My first and only love.  I met and fell in love with Wil when I was 15 and we have been together ever since.  We have raised two wonderful children together.  Been through the ups and downs of marriage together.  Had good times and bad times.  Fought cancer and now Dysautonomia together but through it all we have prevailed.  I love everything about him.  He is my strength and my rock and he even takes me to the ocean when he knows I need it even though it's not his idea of a fun place to be!  Now that's love!

My life may have turned out quite a bit different than I expected it to but when it brings me down all I have to do is think of these ten reasons and all the hundreds of other ones that make me realize that I am indeed a very blessed person.
It isn't always easy to do but just like your grandma always said:
"When life hands you lemons all you really can do is make lemonade!"
Til next time,
Janet

Setting limits....saying No....feeling better.

 

 If there is one thing that I have learned recently it is that I have to slow down.  No not while driving a car, that would take a whole other post to talk about, but to limit what I expect from myself and even what other people expect from me.  Before I got ill I was a constantly on the go.  Running my kids around, helping out at school functions, driving them to sports, team mom, room mother, volunteering at church, cooking, cleaning, and even working full time in management.  WOW! Looking back I wonder how I ever did it.  Was I younger or just crazy?  Did I really, once upon a time, feel good enough to do all of that in a day?  Does anyone really feel good enough to do all that in a day?  The answer, at least for me, was yes.  I love to be busy.  I love to feel useful.  I love to help people and make life easier for those around me.

I am lucky...I know I say that a lot but it's true.  Dysautonomia didn't decide to rear it's ugly head until my kids were grown and all the craziness of raising a family had passed.  This was finally mine and Wil's time to just enjoy each other, traveling, playing with our grand kids, basically whatever we wanted to do.  Unfortunately life threw us a curve ball and all that changed.  What I had to do was learn to change with it and that has been hard for me.  I don't want to slow down, I don't want to stop working, I want to be out and participating in life, I want to do all those things I did before...but I can't.

Slowing down and finding my limitations has finally come to the forefront in my life and that is hard.  I love being out there helping people.  I am a helper not a helpee (I know not a word but I like it).  I don't want to depend on people, friends, family or Wil, I want them to beable to depend on me.  I want to be there for them when they need me and make their lives easier.  That has always been when I felt the happiest, when I was giving of myself to others.  I am not good at asking for help, I am not good at saying no to people, especially if they need help and I am definitely not good at depending on people,

but I guess it is time to learn how.

Today was the first time I have ever said "No." to someone and it broke my heart.  I was suppose to take my father-in-law to the doctor.  I always go with him because he has trouble remembering things and he depends on me to help him remember what the doctor says, to remind him what he wants to ask or tell the doctor and to set up his next appointment and remind him when it is time to go.  There was just no way I could do it.  I am still not feeling good enough to do anything but stay in bed or lay on the couch.  When I called him and told him I knew he was disappointed.  He didn't even remember how to get to the doctors office.  I gave him directions and I think he will be okay but I just feel awful about it. 

It's time to start asking for help when I need it, to say no when I am not feeling well enough to do things for people and to stop when I am at my limit, another thing that I am not good at doing.  I am an adrenaline junkie.  I think that is how I made it through so many years of having POTS but not letting it slow me down.  I knew that if I just pushed myself the adrenaline would kick in and I could keep going.  It was when I finally stopped that I would pay the price.  The term "crash and burn" doesn't even begin to describe what would happen to my body when I finally gave in.  Once whatever was going on got resolved the adrenaline that had kept me going wore off and I would realize just how much I had over done it.  At first I could go for months living on an adrenaline rush while handling one family crisis after another.  If you know my family's story you would know there have been a lot of crisis', once again that's a whole other post.  Eventually though ignoring the fact that I was actually ill and running strictly on adrenaline would catch up to me and I would be in bed for weeks.  However, like the song says, "I get knocked down, but I get up again" and off I went to deal with the next crisis. 

I can't do that anymore and it has pretty much taken these past two weeks of my health being really bad to realize it.  I need to slow down, I need to set limits and acknowledge that I can no longer do all the things I use to do, at least not all in one day.  Running on adrenaline is not doing me or my health any good.  I am ill and I have to start accepting it.  My body has finally said, "Enough" and it's time for me to listen.  So I will do my best to slow down.  I will retrain my way of thinking and choose one thing that needs to be done each day and do it, the rest will be there tomorrow..........

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.

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!