The Chronic Illness Statements

This is a hard topic to discuss because all of us at one time or another has bad days.  Yet, when you suffer from chronic illnesses there are many times that your good days are the general populations bad days.  Yet, people do not understand why you act the way you do.  are the statements that drive me and so many others insane and how to fight back.

1. You Don't look sick....my response is Thank God.  If I looked as bad as I felt I would need to go turn myself into the coroner.  Changes people's attitude immediately.
2. You look like your doing good today...my response Great...I must look like death warmed over the rest of the time.
3. The rhetorical How are you feeling statement...response...you really want to know or do you want my old stand by...I am fine
4. What you mean you cant drive...response...well I can if you don't mind if you are the car in front of me when my hid starts spinning.
5. You are way too young to be that sick...response...great now your saying my body is old...cause I really do feel this sick.
6. I made this just for you why aren't you eating...response...well I decided I wouldn't get sick at your house today...but if you would refer that give me a big ol bowl of it.
7. There has to be a cure...response...yeah there was a cure but I decided to stay sick for the sympathy..
8. You had to do something to get sick...response...you are right....I got it because I judged someone that didn't look sick.
9. I saw you yesterday and you looked so good. what did you do to make yourself so sick today....response...stuck my head in a blender thought i should let it spin so i could get sick.
10. Last but not least...my all time favorite...I hope I don't ever get that sick...response...come on join the fun...I mean I really could use a sick buddy...want you do it for me?

See most people don't realize the statements are so hurting.  They only feel the pain when they themselves are faced with illness.   So getting mad doesn't help them understand what they are doing.  Turning it into a comedy routine helps boast your morale.  It also helps them see how insane their statement really is...don't forget people are not trying to be mean.  Our society just has a hard time dealing with illness.  We expect the medical field to cure all our ills.  So when we don't immediately get well then the thought is you must not be trying hard enough.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve. 

Accepting your illness

The first step of getting better is accepting your illness.  It doesn't mean you cant be mad about being sick.  It doesn't mean you have to be happy about being sick.  It simply means that you accept what you have been given.

Instead of fighting your body you have to learn to live with it.  Yes, you will have limits but that doesn't mean your life is over.  In fact, you might find that your limits in one area increases what you do in another area.  I can tell you from my own experience it is hard to accept that you can't do what you use to do.  Yet, now I have more time to spread awareness and help find a cure.

I have days where I get mad because I cant do something that I did before.  My hardest thing is being dependent on people for a lot of tasks that I use to do myself.  The fact I cant leave my house unless someone drives me actually drives me insane.  Yet, I have realized that I can leave my situation by watching TV or reading.  I am catapulted away to somewhere different than where I am actually at.  My escape is now all mentally produced but it does help a little bit with the driving issue.

There are days I get mad because I see someone eating something that I am craving.  Knowing deep down if I even took one bite I would pay for days.  So I have learned to enjoy what I do get to eat. When someone is eating something I am craving i just imagine what I am eating is the same thing.  Amazing how you can let your mind wonder and create your own space.

So yes accepting your illness is very hard.  You have to learn that it isn't your fault.  You didn't do this to yourself.  Most chronic illnesses are caused by something you cannot control.  The two that bother me most are both idiopathic.  No one knows what caused it and all I have to do is to learn to accept it.  When I fight it I come to realize that it is harder for me to deal with and a lot of times I get sicker because I am worrying about it.  So I have decided just to live within the limits and know that one day they might figure it all out until then I will keep on keeping on.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve. 

The six dreaded Letters of Chronic Illness

So what are the six letters dreaded letters of Chronic illness S T R E S S.  That is right the worse thing that can happen when you are sick is to have stress in your life.  Yet, how do you avoid stress when you are feeling sick.  Furthermore how does anyone avoid stress in their life.  Are we not constantly surrounded with people, events and circumstances that STRESS us out.  The body does not like stress and if you add in a chronic illness you are setting yourself up for a major flare up.

It is vital that you learn to release stress in a positive way.  Holding on to it will only make you sicker.  I know you are thinking easier said than done.  I know just how you feel there are times that the only way that I know how to deal with stress is to scream.  I call it my fight back mode.  Yet, there are several things that you can do to fight stress in a positive way.

1. Don't do it alone.  Hiding yourself from people when you are stressed out keeps you from sharing the load with someone that may be able to help you.
2. Don't dwell on the negative things in Life.  We all have things that are going good in our life. When things are stressing you out think about the things that put a smile on your face.
3. Don't be mad at your body.  Being mad at your body will only make it sicker.  Instead rejoice in the things that you can do.
4. Pick up a hobby.  Everyone of us has something we like.  Maybe it is playing a game on the computer.  Maybe you can write letters or even start a blog.  Find something that you can use as a distraction.
5. Don't give up.  This is the most important one that I have found useful in my battle of stress. I want to be the victor.  To do that I cannot give up I have to fight harder today than I did yesterday.  Yet, fighting gives me control and sometimes that is the best way to deal with stress.

So if you are stressed out today don't feel alone.  We all go through different stresses throughout the day.  Yet, we can make it because we are strong.  The power to be the victor is within us we can conquer stress if we just fight the hard fight.  Be sake and always remember that tomorrow is just a few hours away.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve. 

What can I eat

This subject is what scares everyone that has Gastroparesis.  If you have Menieres you know that your diet it just as tricky.  Most people with one chronic illness also have another illness that complicates the issue of what to eat.  You might not be able to eat gluten, yet are not suppose to have starch, oh wait no fiber and don't think about adding salt.  So the question comes what can I eat?

This has bothered me for sometime and I have being learning to live with my pacer.  See life changes when you aren't as nauseous as before.  You become a little risk taker and then you find out that somethings are off the list for good.  The best thing that I have learned through this whole process is that no two of us are alike.  What I can tolerate would send others down a deep spiral.  What others eat I can't even handle the taste with out the nausea starting.

Some people swear by juicing others by puree.  Some say baby food others try soft solids.  The goal is finding out what you can do that makes you get through the day.  Remember what you eat today may not be something you can eat tomorrow.  Don't beat yourself up if you try something and it doesn't work.  We learn over time to become one with the body.  Once you quit fighting and eat what your body can handle then you will start to get better.

Now I laugh and say that since my pacer I have started to lose weight.  Which for me is a great thing.  I am actually eating healthier and my body is getting the proper nutrients.  I still have trouble with the fiber components but that is okay they just take to long to break down.  I can enjoy food now because I have learned that food isn't my enemy.  My body isn't my enemy they are a tag team that need to work together.  If you eat the right food and the correct amount you will win the battle.

Now what about those that can't eat anything.  Once you get to that point the doctors help with parental feedings or use an NG tube.  If you are at this point don't get mad.  The frustration can set in quick because most of the things we do in life revolve around food.  So here is what I suggest be the owner of your new life.  don't get mad get even.  What I am saying is take control don't give up.  Be happy that you have a way of still moving on with life.  

I learned a valuable lesson and that is people will look at us that suffer and be amazed with what we do.  There are people in your life that think you are wonderful.  They know how you feel and they put you on a pedestal when you accomplish milestones.  My friends are my biggest supporters and when they see me do things they are excited.  

So keep a diary of what you can eat so that you know what works and what doesn't.  Also keep a diary of what all you accomplished that day.  You will soon learn that the one diary is more important than the other.  For me what I got done today is better than what I can eat.  Now I concentrate on it and my life is much happier.  Guess what I can add posting this today to my list of accomplishes.  What have you done that makes you smile today?


For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve. 

Twiddler's Syndrome

Have you ever had a pacer or other surgery.  No matter what you do you can't keep from touching it.  I know that this is something that has happened ever since my Enterra device was inserted n February.  It seems to hurt all the time.  At the site of the pacer.

So I have a tendency to rub or pat it.  Then I found out that there is this crazy thing called twiddler's syndrome.  Amazingly this is when someone has a surgery or pacer and they twiddle with it.  Let's just say I have become a twiddler.  I have no control over it.  It is like my side draws me to it and it has to be rubbed.

The problem is that the twiddling or fidgeting of the pacer can lead to serious complications.  People have actually had pacers moved because they mess with the pacer.  In fact, it is one of the warnings in the manual.

So for right now I haven't figured out how to stop twiddling with the pacer.   I have a feeling that knowing about the condition has helped a little.  But it is hard to break a habit that you have started.  It is like a bad habit you just can't stop.

So if you discover that you have started this.  Then consider trying to break your habit. If you can stop it before you start the better off you are.  So here is my first suggestion whenever you go to touch it think f I do this I might have to undergo surgery again.  Because you can dislocate the pacer to the leads.  

Secondly, always remember that the more you touch it the more you will continue to do it.  Encourage your supporters to point it out to you if you are twiddling.  The more people to help you stop the better.

So my update I am consciously not doing now since I know about it.  Every time my hand goes to the side I take a deep breath and remember to stop.  Then lastly, my friends and supporters see me and they say hey you is twiddling.  I feel so guilty that I stop and then do not go back to it again.  

Well,  there you have it something you probably never heard about.  But, if you are like me you been doing it for awhile without even realizing it.  So enlist friends do the research and see if you can stop it before you unintentionally dislodge your pacer.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve. 

Riding the Water Wave

This must be what is happening in my Ear

Who needs a water ride when you have one in your ear everyday.  Well as you can tell there has been a delay in post this week.  I love the fact that you never know when you will hit the rapids and start a spin that knocks you off the raft for a few days.  This week has been one long ride down the rapids.

Today I wanted to go into more detail about Meniere's Disease.  This illness was diagnosed in the 1800's.  Just think about it physicians have known this disease for 150 years and there is no cure.  In reality there is only guesses what causes the balance issue.  Even more upsetting is that no one knows why this happens to people.

Before any illness can be cured people have to know what causes the system to go bad.  Yet, this disease seems to be one of those that physicians still use old medical treatments to cure.  Now I say this because if you look at medicine over time you will see that the final solution is to remove what is suspected to cause the illness.  The last step to curing the disease is a vestibular neurectomy, or in layman's term removing the balance portion of the ear.

Like many illnesses there are varying degrees of Meniere's disease.  Mine personally has gotten to the point that I have lost my balance at all times.  I also have daily attacks of vertigo.  The most frightening are those which are known as drop attacks.  In this type of attack the person affected needs to lay down immediately for the vertigo to come to a stand still.

Two days ago I had one of my worse drop attacks that I ever had.  It took two people to get me from my front room to my bedroom.  My whole mind was spinning.  Then when I laid down I felt as if I was falling off the bed.

When I explained this to a friend they said that must be like the times when a person gets so drunk that they lay on the bed with one foot on the floor.  I responded with yes, but imagine that times 100 and not only is your head spinning but you balance is gone.  You body doesn't feel like your own.  In all reality all you can do is pray that the world stops so that you can get back into your own body.  Because with drop attacks you do not feel yourself.

So there you go hope you are not riding any rapids today.  I still feel off because of this last one. Short and sweet if you have one of these attacks lay down.  Take your medicine you can also place an ear plug in the effected ear.  I find it amazing that the ear plug helps drown the tinnitus.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve. 

Permanent Gastric Stimulator

In my last blog I discussed the placement of a temporary gastric pacemaker.  This blog is about the permanent one.  Others will have different views this is how I have responded so far.  Remember I have only been living with this 5 months so I am still learning a lot.

For starters, would I have done the surgery if I knew then what I know now?  The answer is a resounding yes.  Does that mean I am cured?  No I still have good days and bad days.  I still have nausea but nothing like I did before the surgery.  When I have my worse days now they are about the same as my bad days before.  You might be asking what does that mean?  My worse days before were those when a drop of water or a little puree mad me deathly ill.  Now my worse days are filled with nausea and bloating.  Do I still have days when  I can't eat?  Yes, and I know as soon as I wake up if it is going to be one of those days because me and an my old friend have a morning conversation.  (For those of you with DTP you know exactly who I am talking about, but the only thing that my friend can do is listen and flush the bad news away.)

Since I had already had the temporary we knew that I would more than likely respond to the permanent one.  I am glad I went through with the temporary placement first.  The permanent surgery is painful and I spent 5 days in the hospital.  I came home on pain pills.  I also had to be careful coming home when it came to lifting and bending.  I don't feel like I am back to where I was before the surgery as far as strength and energy.  But this might be my new norm which we all know changes over time with Gastroparesis and Menieres. (Menieres has decided to go into a 5 month flare up without a day of not spinning or being off balance.  Sometimes I wonder if having 3 surgeries in two months was just too much for my body to handle.)   

I also have pain on my right side where the pacer was placed.  This is very annoying and uncomfortable for me. Yet, this is the way I usually handle surgery so it might only be me that would be hurting this long after surgery. For those of you that have read Harry Potter my scar and his act the same.  But my It who should not be named is my hand.  I have self diagnosed myself with a bad case of Twiddler's Syndrome.  (Will have to do a whole blog on that.)  If you haven't read the Potter series this example may be more for you. Three years ago I had a endolymphatic shunt placed for Menieres disease and over the last month and a half the stitches have decided to surface behind my ear. Which means my body doesn't like them.  Because of the type of stitch I am pretty positive that it was used during this surgery. I wonder how many years it will take for them to start surfacing. 

Dr. Thomas Abell is my motility specialists and did the programming and placement of the temporary pacer.   He is handling all the motility issues.  I also have another GI doctor Dr. Martin Mark, that works with my GERD issues.   Dr Robert Cacchione was the actual general surgeon.  During my procedure they not only placed the pacer but also did a biopsy of my stomach muscle to help determine the cause of my Gastroparesis.  Lucky me, not really, I am one of the patients that is listed as having idiopathic Gastroparesis.  The hope is that once the biopsy results come back we have a cause so that I can be treated for that which should help with the Gastroparesis.

Due to the pain medicines I also started having a major change in other areas of my digestive tract.  I know now that even though my stomach empties slowly now my colon empties extremely fast.  (Smart pills can detect things that other test might have missed.)  So we are going to start looking into that and why it empties in less than a half an hour.  

Make sure to read the patient manual if you aren't given one at the time of the surgery you can get the information from the website.  http://www.medtronic.com/wcm/groups/mdtcom_sg/@mdt/@neuro/documents/documents/ges-ent3116-ptmanl.pdf .  If you still have concerns talk to your doctor and they can answer your questions.

I did go back to work for a few days, but the Menieres and the surgery were just too much this time.  Between my head spinning and recovering from the surgery I just could not pull it off.  It is devastating to have to throw in the towel.  But, I know I fought as long as I could.  My ENT wanted me to stop working about this time last year, but i tried to keep going.  So it isn't as much giving up.  I actually fought the battle until my body said time to rest.

One of the other changes that has happened effects my stress reliever photography.  I am one of those people that likes to take pictures as close as I can.  My favorite setting is super micro because I get a thrill of catching the smallest of God's creatures and plants doing their daily chores.  I know it is crazy but if they can do it so can I.  Now that I have my stimulator bending down to get those shots is impossible.  I wish I could do it, but there is no way.  (Plus with the Menieres if I bend I am going to hit the ground.)  Thank goodness for telescopic lenses and a very good camera...also thanks to a friend who scouts out places and drives me to the right spot so I do not even have to get out of the car.

I have had several visits so far adjusting the stimulator seems mine decided to turn itself off at one point.  Which scared me when it was discovered during a visit.  We are not sure how long it was off, but I do know for a few weeks I thought that I had done this crazy surgery and now it isn't working.  I keep a sharp eye on it now.  More than two or three days feeling bad and the Doctor will be hearing from me.  

So I already know the question you are going to ask would I recommend the procedure for everyone?  (I know why you are looking at this you want to know if it is your best option.)  That recommendation is not mine to make.  The physician will do test and will lead you on what options are best for your individual case.  Remember some people respond absolutely wonderful to the stimulator.  While others get a temporary reprieve only for it to wear off and they go searching for more answers.  There are others that it did not help or they had to have it removed for various reasons.  You and your doctor know you best and the decision to undergo this or any other surgery should come from them.  It is still your decision after weighing all options.

Well, that is my take on my pacer.  I am glad to have had a physician that guided me to something that would work.  I am not cured.  Yet, I am hoping to make it until that happens or at least enjoy what time I do have a little better than before the pacer.  I keep praying that everyday it works and thank God for both good and bad days.  I am tired, head spinning and tummy wants to start acting out so I am out of here.  

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.