Communication is Key

As a loved one to someone who has a terrible disease, you may often try to downplay some of the stuff you are going through in your own life, to the point where you don't even communicate those feelings to your sick spouse.   After all, nothing you are going through compares to what they are going through.  They are lucky sometimes to get out of bed on their worst days, so how can you even think about complaining about your job, or the fact that it is raining, or that you can't get past a Candy Crush level?    Of course, I wouldn't probably recommend complaining too much about a game, but you get the point - everything in your mind seems trivial compared to the person who is sick.   You will get into your own mind that you can work everything out yourself, and move on without even your spouse noticing you were having a problem.

Here's the thing:  You have likely lived with your spouse for a long time - perhaps even years.  A small change in your behavior - even if you don't personally see it - is going to be noticed.    It is almost impossible to "fake" being OK, because your body is going to naturally do things that show that you really are not OK.

I say all of the above, while recognizing that in this instance, I don't practice what I preach.   That has always been the case; even before Colleen got sick.  I don't communicate my feelings very often, especially when the feelings are the not-so-good variety.    It is easy for me to express my love, my gratitude, and all of the finer points.   But put my back up against a wall, and I internalize it - at times, it would be easier to go into a jungle and lift up an elephant than it is to get anything out of me.   It is a part of who I am, and how I am built - is it healthy?  Not in the least bit.

Bottom line is that communicating with your loved one is a key for them to get through their disease as well - sometimes switching the focus from what they are dealing with to something you may be dealing with can actually make them feel a little better.   They can release all of their dreaded thoughts and concentrate more on what you are going through.   In the end, you have to try to get it out of your own mind (I never would say this is easy - because I can't do it myself) that your problems are trivial compared to your loved one's problems.    This is actually quite true, but you shouldn't simply minimize what you are going through in your own life in order to protect your loved one.

They will catch on.

An Antibiotic A Day......

As you may have figured out by now, I often need an inspiration for a post entry - sometimes that inspiration comes from a place completely out of left field and unrelated to Gastroparesis itself.  In this case, my inspiration came from my niece's recent diagnosis of a strep throat.

There is only one way to really cure a strep throat - through the use of antibiotics, and that is what my niece is taking.   Antibiotics are not necessarily "bad" drugs.  They can treat many horrifying conditions, and have been a life saver for many people.   When you have a bacterial infection, something designed to kill that infection is logically the way to go.

However, when you are dealing with a stomach condition, antibiotics can cause all kinds of havoc. To be exact, there is a theory that Colleen has that taking an antibiotic to cure a case of the shingles years ago may have contributed to where she is now.

Antibiotics do not discriminate when they go into action.  In addition to killing off the bad bacteria that is causing your illness, they also kill off beneficial bacteria within your system.   In some cases, an antibiotic is not necessarily designed to kill bacteria - some are designed to stop bacteria from growing.  This is the case for a drug Gastroparesis sufferers all know a lot about:  Erythomycin.     This antibiotic is often prescribed to Gastroparesis sufferers, but not for its bacterial benefits.   Rather, it is given because it is proven to have prokinetic properties.    This drug doesn't necessarily have a tremendous track record in the treatment of Gastroparesis, and it does sometimes have me wondering if it is actually doing more harm than good in the overall landscape.      Remember, nobody designed this antibiotic to cure or even treat Gastroparesis, and that in itself can lead one to hesitate before going on a consistent regimen.  

Think about that for a second:  You have a terrible stomach condition, so the doctor prescribes you a drug that attacks bacteria (both good in bad) in the region of your body that you are having trouble with.   Unfortunately, drugs cannot be programmed.  The doctor can't flip a switch in an Erythomycin pill that tells it to only help contract the stomach while leaving bacteria alone.

This is not to say that Erythomycin cannot work for you or anyone who has Gastroparesis.   Sufferers of this condition are desperate to find anything that can give them relief, and if this drug can provide that for you, I would not tell you to stay away.

By the same token, you need to be somewhat careful when using anything that takes good stuff out of your body.   Because of that, some doctors may recommend you take a probiotic - in theory, this is a great idea:  All the bad bacteria is forced out of the body, now let us reload it with the good stuff.   You can get over-the-counter probiotics, but another great source of probiotics comes in the form of Kefir, which is essentially liquid yogurt.   Colleen takes this every day, and doesn't even need to take a large amount of it.  (For the record, she is not on any antibiotics - she takes it because it is a part of a program she is on to try to get rid of the evil disease inside of her).

There has been debate on whether or not you should take a probiotic during antibiotic treatment or after.  I was under the impression that you should take it afterwards - after all, the antibiotic will just kill the good bacteria you are putting back in your body, right?  The answer in reality is that it actually doesn't seem to matter and it may be beneficial to take the probiotic during treatment.

Regardless, just remember that there is no cure for Gastroparesis - and that no antibiotic that has been formulated was designed to cure Gastroparesis.    If your doctor wishes to put you on Erythomycin (if you have Gastroparesis, this is a given), follow instructions carefully.  Typically, you will not want to take this like you would if you actually had a bacterial infection as your body will become immune to it.

In the end, it is my personal belief that antibiotics should only be used for what they are designed for:  To cure bacterial infections.  They shouldn't be used for viruses, and they probably should not be used for something like Gastroparesis.      I am not an expert and nothing close to being a doctor, but I do like to say that fitting a square peg into a round hole typically doesn't work in the long run.  

A Bit of Mind Over Matter

Today was our annual "Christmas Decorating" day - or, shall I say, it was Colleen's annual Christmas Decorating Day.  She doesn't really want or need me to do very much.  If I strung the lights outside, she would inevitably find something she doesn't like and redo them to her taste.  She is a perfectionist with Christmas decorating.  Luckily for our marriage, I am not - so it is very easy to have her take over the reigns without any pushing back.    Anyway, my mission today was to go out to Target and Lowe's to try to find additional lights that have caught Colleen's attention this holiday season.  Of course, today was December 7th, and the only stuff left in the stores was the stuff that nobody wanted.   Perhaps there is an Island for Misfit Lights that is next to the misfit toys from Rudolph.

Coming home with nothing is always a bit of a downer for me - I am the type of person that is more than willing to drive all over town, going into various stores, just to find the one thing that Colleen or myself wants.  I like the hunt, I guess you can say - if the product is on the shelf, I am going to find it somewhere.  

After I came home with nothing, I believe a bit of an urge came over Colleen - the urge to find those lights she wants to add to her already impressive collection.   That urge lead to the point where she decided to go out and try to complete the mission herself - with our dogs and myself waiting back in the car at every stop.  And, of course, complete the mission she did - as we went to another Lowe's that had more stuff in stock than the one I went to.

When you are sick, there is always that feeling that you simply cannot go anywhere.  When that sickness involves a horrible sensation in your stomach, it makes it even worse.  Your mind goes to places such as "What if we are 20 minutes away from home, and I suddenly get so sick that I have no choice but to throw up in an aisle somewhere?"   There could be more to it than just that - if you haven't been out in a while, the whole situation of needing to get ready in and of itself can be daunting.  When you are ill, you simply don't want to deal with stuff like that.  As I have said a few times in this blog, the one thing I can relate to with Colleen is being sick for a long period of time.  I remember the days when leaving the house simply wasn't appealing to me - my thought process being that it would do me more bad than good.    

This is where mind over matter can come into play - my inspiration for this post came from something Colleen herself said:  "I was browsing through the stores, and I wasn't feeling sick - because I had something else to occupy my time...to concentrate on".   This is so very true - when you are sick in bed for hours or days, the only sensation you feel is "sick".   When you get out of bed to do other things, the sensation of sickness may alleviate - it is still there.   It isn't that you aren't sick.  It is just giving your brain a break from the constant thoughts of illness.

If you ever feel this way, one thing I don't want you to think about is whether or not someone will look at that and say, "See, you aren't sick - you were able to accomplish so much today!"  This is not the place you need your mind to go; to be exact, you need to 100% not think about that in the least.  Doing something that you enjoy doing or something you want to do shouldn't come with feelings of what others would think when you actually do them.   That is a vicious cycle that is impossible to break.  "If I go out looking at Christmas lights, everyone is going to think I am healthy again - instead of dealing with that, I will just not do what I want to do".  That kind of thought process will never work for you - because going down that path will just make you feel worse, and won't let you break out of the vicious cycle you are in.

As a loved one, my advice is simple:   When your patient is feeling the need to do something they really miss doing, lightly encourage them to do so.  Never try to force the issue, but also don't discourage.   One step to breaking the curse that illness puts on people is to not always let it win.   That isn't easy, and it can't always be accomplished.    But on days when it can be accomplished, do what you want to do - and don't worry about what others think.   In the end, what they think means nothing - how YOU personally feel is what is most important.