Preparing for a Physician's Appointment

Physician appointments can be both exciting and scary.  The big issue comes what is going to happen today.  Is there news that you are truly anxious to hear.  Or is it one of those days where something is shared you would rather not know.

I chose this topic today because it is time for one of those appointments.  There are things that I want to know but there is that anxiety.  When there is a chronic illness involved you just don't know what is going to happen.

Steps to help with the anxiety.

1. Take a book with you even better if you have a tablet.
2. Right down any questions that you want to make sure you don't forget them.  Nothing like wanting to ask something and leaving without asking and having to wait to get the answer later.
3. Take an MP player.
4. Don't go alone, crazy things might happen and you want to make sure someone remembers what is said.
5. If there is something that you don't understand ask the physician to explain further.
6. If a big word is used especially for a diagnosis have the physician write it down.  You know that you are going to be sharing that with supporters and you want to make sure you have the right word.
7. Try to get a good nights sleep.  Being tired will just raise anxiety.
8. Lastly, give up prayers to God (your higher power) it never hurts and sometimes having that comfort is even better than other things you attempt to do.

Now that works if you are going in for a regular exam, if there is such a thing,  Yet, what happens if you have to go in for a procedure.  A lot of the above will help.  Yet, there are a few things you might want to remember.

1. Plan on being there longer than they have told you.  Your over estimate will help you         de-stress.
2. Ask for prayers and support from all of your supporters they will want to be there for you.  This s good for you and for them.
3. Don't expect the results the same day.  Most test takes days or weeks to fully interpret.
4. Make sure the person or people going with you have drinks and something to eat.  It helps if they are just as comfortable as you because they are just as anxious. (We have a care bag we take and it has crossword books, snacks, drinks, gum,mints, tablet, pen and my partners tablet and extra Oxygen canisters).
5. Lastly, be honest with the person giving you the test.  If something unusual is going on that day they need to know.  Sometimes that might effect test results and they can be adjusted.  They might be able to give you something to help you endure the test depending on what it is.

So no matter what do your best to relax.  Don't stress and assume it is going to be an awful experience.  Most importantly if it is one of your bad days to start with let the physician know.  Also make sure to take the things that help you get through the day.  I know my doctors have actually have changed what they were seeing me on days where things were really bad.  I even had a nap one time because my head was spinning so bad they gave me a shot and let me rest until I could walk safely. 

Time for me to post and head to bed.  Very early doctors appointment with procedures.  So I want to follow my own rules and relax before I get there tomorrow.  Have a good one and if you got a second add a little prayer that tomorrow will be easy for me and all others having to make those physician trips.

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.  

Bad Days and how to turn them into Good Days

Rough subject but one that we all have to deal with at one point or another.  There are some days that no matter what you do you will wake up not feeling up to par.  Or even worse, days where you woke up feeling OK but without warning you get ill.

Sadly, for many of us most of our days are like the ones described above.  We do our best to act like nothing is wrong.  We tell others that we are fine.  A lot of times we push ourselves to the very brink of collapse because we do not want anyone to know how we really feel.  We are exhausted and have to deal with pain and illnesses that people will never understand.

Yet, here is where things change we can turn the worse of bad days into a good day.  Now it is not like you can snap your finger and the next moment you feel better.  But, there are things that we can do to make our bad days be good days.

People who are suffering BAD TUMMY DAYS.

1. Don't stress the small stuff.
2. Take a nap.
3. Grab something that is your comfy nourishment.  
4. Heating pads can make good friends on the run a hot water bottle works well.
5. T.V. and a comfy couch or chair.
6. An awesome book or a companion to talk too.
7. Grab a Journal or if on the web a blog or your facebook, twitter account share your feelings. Amazing how getting it down and sharing will help.

People who are suffering with BAD VESTIBULAR DAYS.

1. Don't stress the small stuff.
2. Take a nap.
3. Lay down, if you are out about sit down and rest your head against the wall.
4. Put on a sleep mask to block light.  (If you don't have one trust me get one can be a big lifesaver.)
5. Make sure to use a cane or walker depending on how dizzy because you don't want to fall.  (Suggest having it with you for emergencies even if you don't use it all the time)
6. Try your best to knock out the sound and lights around you.
7. Carry your medicines with you at all times.  Especially if you are going to be out for awhile because missing doses will make things worse.
8. One of my tricks (modified from a great friends trick) is to lay down on a couch.  With my back running along the back of couch and placing my hand on the top side of my head. 

Now, here is the big thing when you do have a good day.  Forgive your body for the bad days because you deserve it.  Today has been one of those crazy bad days when my tummy and head both decided to be bad at the same time.  So it took a lot longer to post.  I did do something that made today a better day than it could have been if I hadn't followed my simple rules.  My nap was nice.  The next one will be better and will be started as soon as I post.  Be good to yourself and remember to stay hopeful and enjoy all of your good days.

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.  

A Patient's Rights

Patients have rights when it comes to medical care.  When it comes to individuals with chronic illnesses there is a fear that if we try to take more control of our care we will loose medical professionals support.

This fear often increases because of our contact with emergency care.  We know our bodies better than anyone else and when we are at a point that we cannot manage at home we attempt to go to get care.  This happens a lot of time when regular physician offices are closed.  It also happens because it often takes years before we learn what is really wrong with us.

Physicians in Emergency rooms are there to stabilize patients and to help in acute situations.  Those episodes that we cannot handle at home are acute and yes stabilization is something that we need.  Yet, here is the problem there are people that are attention seekers and pill seekers that over abundantly use emergency care.  The government has really cracked the whip on physicians when it comes to managing pain.  A lot of the flareups that we as individuals with chronic illness have involve pain.  Therefor physicians due to government regulations and the abusers have started to be leery of treating patients with chronic issues.  Is this right, no. Yet it is reality the best way to get care is to establish a team of physicians that can build a relationship with you.

So now that I have gone over why we fear the way we do and why some physicians act the way they do.  Let's get on the positive side of things.  YOU HAVE RIGHTS.  That is how simple it is.

1. You have the right to choose your physician.
2. You have the right to change physicians if you are not getting proper care.
3. You have the right to seek second opinions.
4. You have the right to get professional care.
5. You have the right to be listened to.

I want you to understand that having rights doesn't mean that physicians are going to be able to cure or treat every ache and pain.  If that was true I know my GI would be curing every case of Gastroparesis that he could.  My ENT would have stopped my spins way before now.

So there is a fine line and you have to walk carefully on it.  There are times that shopping for the right doctor is the only thing you can do.  When you are not getting diagnosed and getting sicker and sicker you need to see if there is a specialist you can find.  Yet, when you have a physician that listens treats you the best they can don't get frustrated and doctor hop because they cannot make you any better.  

There comes a time when you are being treated when you realize that you may physically be at your best. Then comes the next part, what do you do then.  When you have a chronic illness this is something that people have to eventually face.  Yet, here is what I want you to know you must understand that you have to keep hopeful.  The physical part of the illness is something controlled by the body but the feeling is something you can control.  You can allow it to kill you or choose to do all you can within your new limits.  

Know that the limits will change and you will have to get used to new limits as time goes by.   I know that I had a hard time dealing with this.  My favorite line is I am too Young to have this happen.  Isn't that what we all say no matter how old or young we are.  We think of all the things that we hoped to accomplish and have to face that we might not get them all finished before the end of our life.

I want you to know about a second set of rights that you have that are often harder to understand.  If you want to live life to the fullest you need to understand these and choose which ones you want to utilize.

1. You have the right to cry.
2. You have the right to smile.
3. You have the right to be mad.
4. You have the right to laugh.
5. You have the right to rest.
6. You have the right to play.
7. You have the right to be alone
8. You have the right to be with loved ones.
9. You have the right to be sad
10. You have the right to be happy.

Here is the thing you will pick and choose which one or combination of rights you use on a daily basis.  There are some that work better together than others but they are all your rights.  Remember it is the way you use these rights that people remember.  So try your best to use the ones that will help make the best memories for you and your loved ones.  On those days that you have to use the others don't be angry with yourself because it s okay to not always be at your best.  People that support and care for you will understand that you being you is the most important part.

Blog posted and now it is nap time.  Crazy thing about all these rights are that they apply to everyone.  So pick and choose carefully until next time.

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.  

How to Handle Holidays and the Expectations that go along with them

Starters I hope everyone in the United States had a great 4th of July.  I hope your tummy didn't act out and your head didn't spin.  Yet, if you are like me you had both of these happen but still made the best of it.

Amazingly illnesses don't know that there is such a thing called a holiday.  This is like so many employers who left their doors open and employees had to show up to work.  It is something that you have to get use to.  There are somethings that just have to happen even when you would rather they would take a day off.

Yet, there is a way to handle holidays and enjoy them. I use to hate them especially the ones that involved eating.  Oh wait they all involve some form of eating.  Isn't it amazing how we as Americans have decided to connect food with all forms of celebrations.  

This not only involves joyous celebrations but also times of remembrance. 

• Memorial day a time to remember those that have sacrificed their life fighting for the United states. Yet, better known as the day the pool opens for the summer and first BBQ of the year.
• 4th of July the day we celebrate the Independence of the United States.  The second holiday of the   Summer season with fireworks and again another outdoor feast.
• Labor day a time to remember what all workers have done for the economy and the United States.  Better known as the last three day holiday of summer, pools close and make sure you get that last BBQ of the year in.
• Halloween is connected with a time to remembering our loved one that have passed.  Yet, it is a time to dress of have a party and collect as much treats, candy and other food goodies one can handle.
• Thanksgiving a time to give praise to God (higher power) for all of the gifts that have been given.  We all know this day as the day of football games, Macy Day's Thanksgiving Parade, and the biggest feast one can imagine.

So it is easy to see how if your illness involves the ability to eat how upsetting these days can be.  Someone with a Gastroparesis knows that sometime throughout that day the food is coming.  For many that angst is what keeps them from enjoying the day.  You want to be around people and party with the best.  

So how to handle it and still enjoy it without focusing, dreading, the food.

1. Enjoy being with Friends and Family.
2. Concentrate on all of the things that go with the Holiday that don't involve food.  In reality the reason behind the day.
3. Allow yourself to spend time resting if that is what you need to do.  If it is a bad day don't fret you can do your celebrating when you are having a good day.
4. Be honest with those that you are with about how making food the center of the event is difficult on you.  Chances are they have never thought about that and will see things differently.
5. Start a new tradition that moves food further down the line in your celebration.
6. Lastly, don't be upset when it comes time for the food because your love ones deserve that part of the tradition.  Being stuck on the fact that they are eating and you are not will just cause you to form resentment against the ones that you love.

Hopefully, you have friends and family members that understand as much as mine.  Yes, we eat but that isn't the highlight it is being together and making lasting memories.  Yes, there is a time of nourishment but that is something that needs to be done.  On those holidays that are bad that let me rest and we make up for it at a later day.

Five blogs and so much more to share in the future.  To those of you that helped me make memories today that we will never forget thanks.  

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.  

Bad Days vs. Good Days

I have mentioned since the first post that there are BAD DAYS and GOOD DAYS.  A lot of people question how is that possible.  If you have an illness how can you have different types of days.  Shouldn't you feel the same every day, which is miserable like your bad days.

For starters let's point out if you do not have a chronic illness you too will go through both good and bad days.  So I will start by explaining what that means for these individuals then I will explain what it means for us with chronic illnesses.

Good Days for people with no chronic illness.

• No pain when you wake up in the morning.
• Eating throughout the day with only problem eating more than you need to.
• Able to do housework without pain or having to rest  in between tasks because you are fatigued.
• Able to go to work with no fear of having to leave because you get sick without any notice.

Bad Days for people with no chronic illness.

• Waking up with a headache or a back strain.
• Calling in sick because you got a bug.
• Cancelling a dinner date because you just aren't up to par.

Now  I know I am simplifying this but there is a big difference with people who have chronic illnesses. Our Good Days are not as good as the Bad Days described above.  

Good Days for people with chronic illness.

• Able to control their never ending pain with medication.  Maybe not all day but for a few hours.
• The spins lifting for a few minutes throughout the day because of the medicine and sleep.
• Being able to eat a few bites of food because of medicines and stimulator helping with nausea.
• Spending a few minutes talking to a friend or watching TV.

Bad Days for people with chronic illness.

• Bed bound for the day
• Headache that will not go away no matter what you do.
• Stomach so sick that even fluid makes you nauseous.
• Falling or hitting walls because you can't stop the spinning.

People like me spend most of our days in the Bad category.  Everything might not be hitting us at the same time.  Yet, there are things that are causing us to limit what we can do.  Yet, we push ourselves to do something even if it isn't only smiling.

When the random good days come along.  Doesn't mean all of the symptoms are gone.  This just means for a little while they seem to be under a control.  Still not as well as you were the day before because ironically a chronic illness means that you will get sicker and sicker as you go along.  Yet, you feel like you can do something for a little bit and want to live life to the fullest.

So the difference between BAD DAYS and GOOD DAYS for those that are sick is easy to understand.  The GOOD DAYS are the little treasures given to us by God (your higher power) so that you can leave lasting memories with those you cherish and that cherish you.  The BAD DAYS are just the normal days that occur because the cards you have been dealt.

Tips on enjoying the GOOD DAYS:

1. Allow yourself to enjoy them.
2. Spend time with the ones that you love.
3. Try to do the thing you love the most to the best of your ability.
4. Snap a few photos to help you during the really BAD DAYS.
5. Most importantly SMILE.

If you are sick you already know what to do during the bad days but if you don't here is what you need to do.  

1. Relax
2. Rest
3. Seek support from the ones that you love.
4. Remember all of the Good days take out your photos and smile because you have those memories forever.
5. Lastly, if you take care of yourself during the bad days you will have more good days.

Four days down.  Takes a lot a few naps while doing it but it is worth it.  My only hope is to help someone.  If my blog has helped you any at all just let me know.  Who knows it might make one of my Bad Days turn into a Good Day.

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.  

Invisible Illness and Emotional Effects

In my first blog I mentioned that Gastroparesis and Menieres are an invisible illness.  I want to first explain what an invisible illness is so as not to confuse those new with the definition.  A invisible illness is an illness that people can't physically see.

I guess it is easier to explain visible illnesses because we all understand those and are willing to take them at face value without question

• A person in a wheelchair rolling along the street.
• A deaf person using sign language to talk to others.
• A blind person walking with a Walking Stick or cane.
• A cancer patient that has lost their hair due to chemo therapy.

We never question if these people's illness is in their mind.  We can see that they are sick and we immediately do one of two things

1. Try to help them even if they don't ask. 
2. Ignore them when they look like they need help. (We don't want to interfere with their independence)

Now let's look deeper at invisible illnesses these are illnesses that people have to take the sick person's word on.

• A person suffering vertigo is spinning in their head.  You have to trust that they are sick because how can you tell someone is spinning.
• A person suffering with fullness after eating one or two bites of food.  First thought that goes through a person's mind is are they trying to loose weight or not gain weight.
• A person that gets sick after eating or drinking.  Are they afraid that they will gain weight.
• A person that has some good days.  Is it depression that is effecting them on what they call their bad days.

See it is easy to see the difference visible illnesses are those that people can connect with an outside physical sign of sickness.  Invisible illnesses can be dismissed because the same signs can be connected with depression or attention getting.

Yet, if you know someone with one of the Invisible illnesses and you truly support them you know the difference.  You know it is not in their head.  You can tell grabbing the wall to keep their balance is realistic.  That not wanting to bend over is truly something that they cant do.

People with invisible chronic illnesses endure something that others don't.  When you have an illness people can see or hear about they don't question how you are doing things.  If you cant do something they immediately accept it.

Those of us with the misunderstood chronic illnesses deal with people doubting how you feel and if you are really sick.  This goes way beyond the general public.  Physicians are so unaware of certain rare illnesses that they don't believe you when you tell them the symptoms.  Insurance companies deny you because they cant accept the fact that you are really ill.

You also become an experimental tool for the medical community. You want so bad to be better to get over how you feel that you will do things most people would never even think of doing.  It is a very shocking experience to go to an emergency room and you have to explain what is wrong and  how the medical staff can help you.

 I will never forget having to go to the ER because I thought my surgical site was infected and it was over the weekend.  The surgeon told me where to go and for them to look at it to make sure that it is not infected.  The physician took one look at the back of my ear and left.  Turns out he had never heard of an Endolymphatic Shunt.  So he wasn't sure what it should look like if it was infected.

I will tell you the fun latter of having a gastric pacemaker and how often I have to explain that.  But this is the stuff that we people will illnesses will do to get better.  Just like a cancer patient or someone that has been burnt we want to get better and Will do what the physician's say.  Sometimes we find out they never heard of what is wrong so they are experimenting on what will make us better.  Then there are times that you are lucky enough to find specialists that understand the illness and they do what they can to make you better because they know what is wrong in the first place.

So to the Emotional Effects are devastating not only to the person that is sick but those that love them. Patients feel like no one believes them.  Their love ones have to watch them endure explaining over and over again about their illness.  Both the patents and their loves one have to endure physicians treating the illness without understanding it.

Here are a few things that can help stop this kind of negativity.

1. Remember that patients don't want have to explain things over and over again.  Look up the illness on the web and enlighten yourself.
2. Patients will have good days but a good day for someone who is sick is not the same as a good day for someone who isn't sick.
3. Patients don't want to be sick.  Who would want to endure with an illness that they will never get over.  
4. Patients would rather not have the attention that comes with being chronically sick.  I know for me I would rather get attention for things that are awesome in my life not about my upcoming procedure or test.
5. Families and friends are not enabling the disease.  Hopefully they are helping to support and highlighting the good things that are going on.
6. Supporters would rather be having fun all the time than having to worry that when they go somewhere how to get the extra equipment to their destination.  Is something bad going to happen and we will have another hospital visit.

Three blogs down.  Now here is the crazy thing it takes me almost all day to do one of these in between dizzy spells and tummy aches.  So hope it is helping explain things from the way I see it.

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.  

People with Chronic Illnesses need Supporters

Today I am wearing one of my favorite shirts.  It simply says: All stressed out and no one to Choke.  But this is not really true I have a lot of people around me that I could choke.  But, their not the ones that stress me out.  In reality they already have to deal with me and probably would say that they are "choked" every once in awhile out of convenience.

See when you are sick and you have bad days the people that are around you are the ones that suffer the most.  Especially if you are going through a new change in the illness.  Because they live your illness and see you suffering and they want to take it away and they can't.

Sometimes it gets so hard that they can't take it anymore and you lose a few supporters along the way.  It is their way of dealing with it.  They really are so sad about how it is effecting the one that they love and care about.  A lot blame themselves for not being able to make their love one better.  Then there are others that just can't even except the fact you are ill.

Luckily for me I have a support group that goes way beyond my family.  I have friends that know when I am having a bad day in an instant.  I have been lucky enough to have physicians that understand.  My church has become a support group that I could not live without.  Lastly, I have a group on Facebook that give me a view of the outside and lift me up when I need a bit of encouragement.

Support groups like this help you make it through the day.  That don't try to push you to do more than you can.  Yet, they always encourage you to do as much as you can.  Those days when you feel like you are at the end they lift you up and make you say OK I will keep fighting.

If you are someone who is gong through the battlefield called chronic illness this is what I suggest.

1. Find one or two people that you can confide in.  You will know who those people are really quick. Most of the time they are the ones standing over your shoulder already that been there this far in the battle.  
2. Talk openly with your friends and family let them know how you really feel.  That is what they really want to know.  If you keep saying I am fine then they will never know when you are having a bad day.
3. Question the support of your physicians.  Now this sounds crazy but if they listen and are trying to do their best then trust them.  If you feel they are not listening then look some where else.  To be honest two years ago I did this.  My physician team I have is undoubtedly the reason I am alive and that is what they are therefore.
4. If you need professional help so that you can vent don't be afraid to talk to a therapist.  It s a hard battle fighting an illness that you can feel but others can't see.  Instead of venting to the ones that love find someone that can help you deal with it.  That is what they have gone to school for and sometimes you need that safe place to just let the steam off.
5. No matter what spiritual belief you have find a group you can share that experience.  It is amazing how much having this support can mean to you.  Believe it or not it also helps the spiritual group because they can see how their support has helped you.

Those that taken on role of supporter I have a few things I would also like to share with you.

1. Thanks for choosing to stand by someone that needs your support.
2. Remember you too may need to talk to a therapist yourself.  This just doesn't effect the person that is sick it is also effecting you.  Sometimes talking and letting out your frustration with a professional can help you support your love one more.
3. There will be days that we will push you away.  We don't mean to but sometimes it is our only way to deal with it.  Sometimes you think it is better to be alone.  So give us the little space but don't run we really want you there we are just scared.
4. You know us as well as we know us.  On the days that we feel good make us do something. Even if it is something small.
5. Lastly, remember what causes our bad days and avoid those outings.  For example:

• If our illness involves our digestive tract food outings are out of the question.  
• If we have vestibular issues things with too much stimuli may make our good days go bad quickly.  
• If we have problems with our hearing concerts and settings that are loud might not be the place to go if you want to talk.

Well calling it a night. Can't problem a blog every night but felt this one was very important.  Because I wouldn't be here if it weren't for those that were my biggest supporters.  

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.