The Joys of Excessive Sweating

Posted by Mildred Jane on February 25, 2013
Posted in: Gastroparesis, health, Inspiration, Life. Tagged: , , , . 9 Comments

excessive-underarm-sweating

The key difference between my day and the photo above is that I did not perform a rock concert today.  Maybe in my head I was a rockstar, but rest assured, I was not dancing around a stage under hot lights trying to get the crowd going.  Although by looking at my armpits, you would have thought I just wrapped up a concert, ran a marathon, or zumba’d for hours.

This is just another joy of having Gastroparesis.  I’m not officially positive if excessive armpit sweat is linked to Gastroparesis.  My hypothesis is that the two are linked because I never had this problem prior to Gastroparesis flair ups.  I’ve asked around in GP communities and some others have the same problem.  Although I will say that I haven’t had enough people to make a statistically sound conclusion to either reject or accept my hypothesis.  (Yes, I am a stats nerd.)

The excessive armpit sweat is a problem for a number of reasons.  Nothing screams professionalism quite like a couple of big rings on your sweater.  This has led me to purchase a number of sweaters and shirts that do not change much in color when they are soaked with sweat.  You may ask why I don’t just wear an undershirt to help with this issue.  Well….I do!

I’ve tried almost every antiperspirant out there.  Some works better than others, but some days my body just decides that it wants to sweat buckets.  Some friends have suggested that I go to a dermatologist.  With all of the doctors visits already in regular rotation, the last thing I want to do is add another one to the mix.  There is also the thought of having to educate yet another medical professional on Gastroparesis.  (It gets exhausting!)  There is also the thought that the dermatologist will just blame it on Gastroparesis and not do anything (which is probably the appropriate answer).  Do I really want to waste the time and money to deal with it?

Sadly the answer is no.  I would rather have one less doctor to deal with, one less bill to pay, and one less pill to swallow or medical procedure to go through.  I already feel like a living pin cushion and have racked up plenty of frequent flyer miles to doctors’ offices, so I think I will sit this one out.

I will sit this one out by hiding in a bathroom stall while I take off my sweater, soak up the sweat with a paper towel, and apply more antiperspirant.  The only thing I know for sure is that those pesky GP elves better be ready to hand wash all these sweaters!

~Millie

PS…Thanks for sticking with me during my short hiatus.  I took some “me” time to see an old friend of 30 years & to visit with a GP sister that is in the hospital.  I was all out of spoons by the end of these visits and took a short break from writing about my Gastroparesis Adventures.

Save a Good Day for Your Caregiver

Posted by Mildred Jane on February 21, 2013
Posted in: Caregiver, Energy, Gastroparesis, health, Inspiration, Life. Tagged: , , , . 1 Comment

blog

When you have Gastroparesis, you go through stretches of more bad days than good.  When the good days arrive you try to jam as many things into them as you can.  You want to see friends that you haven’t seen in a long time.  You want to go for a walk and get some fresh air.  You want to go shopping and replace a pair of shoes that are falling apart and killing your feet.  You want to attempt to find some slacks that will handle your ever expanding/contracting stomach.  You actually want to do laundry.  (No joke, laundry becomes exciting.)  You even get excited to clean.

However, when making all of these plans and cramming your good days full of things and people that you have been missing out on, you inevitably leave out time for your caregiver.  They never say a word or ask for time to be saved for them.  They are so incredibly excited that you are feeling good enough to go do the things that you enjoy.  To go see the people you haven’t seen.  They know that these days are few and far between better than anyone else in the world.  They support you and encourage you to make the most of the good days.

But it is important to try to contain your excitement over a stretch of good days and remember to reserve one for your caregiver.  They do so much to keep us afloat and support us.  They are the only people in the world that see us at rock bottom.  To see us barely able to get out of bed.  To help us off the bathroom floor.  To see how many doctors’ appointments we have to go through.  To see how disappointed we are when we once again hear a doctor say “there is nothing we can do for you”.  To see the radioactive eggs we have to eat.  To see us put the yogurt in the cupboard instead of the refrigerator because our brain is in such a fog.  To see us spiral into a deep depression because we can’t easily do the things we used to.  They watch us go through all of this and never once ask for us to keep a good day for them.

It is so important for us to give our caregivers the best present we can ever give them…one of our good days entirely for them!

That is why tonight I am skipping my glass class to stay home and watch a movie with my caregiver, my rock, my shoulder to cry on.  Without him, I truly do not know how I would survive while battling Gastroparesis.

~Millie

Life is Like a Train (Not a Box of Chocolates)

Posted by Mildred Jane on February 20, 2013
Posted in: Friends, Gastroparesis, health, Inspiration. Tagged: , , , . Leave a comment

“Life is like a box of chocolates, you never know what you’re going to get.”  That is what Forest Gump claims.  He apparently never met someone with Gastroparesis.  When a GPer is handed a box of chocolates, you know exactly what you are going to get.  You’re going to get…..sick.  We have been handed the chocolate that is full of all the disgusting jellies and nuts that manufacturers ruin chocolates with.  This is why I like to use a different analogy for the life of someone with Gastroparesis:  life is like a train.  (This is actually applicable to anyone, but seems to be particularly true for GPers.)

You are probably asking yourself:  how exactly is life like a train?  If you’re a GPer, you’re probably thinking “Yes, hit by a train”.  However, I’m not talking about life being like getting hit by a train.  I’m talking about life being like sitting in that train car and just puttering along like anyone else.

This whole concept of life being like a train started years and years ago for me.  Someone (much wiser than me at the time) told me this analogy and I didn’t pay much attention to it.  For some reason, it stuck with me and the older I have gotten the more I have found it to be true.  Here is what was told to me all those years ago.  Life is like a train.  People will ride with you for different periods of time and people will steadily enter/exit the train car.  People will also get up and move around within the train.

prospecting

Hopefully, you are now on board with the train analogy.  (Sorry, I couldn’t resist the pun!)  The key point to the train analogy is that people are headed in different directions and moving along different paths and at different rates.  As people’s lives changes they enter/exit your train car.  At any given point in time, the people in your train car are the people that are moving in the same direction as you, have similar goals/interests, and are moving at the same rate.  As life changes, someone may exit your train car for no other reason than they are headed to a different place or at a different speed.  You might someday see them again, but for the present moment in time the train car isn’t going to the same place.

You might also have people in your train car that move to another area of the train for awhile.  You might not see them for awhile, but when they come back you have a lot to talk about.  These are typically your childhood friends and family.  In real life, you might not see each other often, but it is like no time has passed since you last spoke.

This analogy has helped me tremendously since my Gastroparesis has become worse.  It is very easy to feel like you are all alone in that train car and the outside world is flying past you at an alarming rate.  You may feel like there was a mass exodus from the train car so that they can escape the GP car that is about to go over the cliff into a severe wreckage.  This is when it is important to look around and see who is still on the train with you.  These are the people that are in it for the long haul.  These are the people who will get creative with supporting your Gastroparesis fight.  Yes, your car may have less people on it.  I would argue that you now have more quality on your train and who wouldn’t rather have quality over quantity.

It is extremely important to remember that it is okay if people leave your train car.  Yes, it hurts and is sad but it is a basic fact of life.  People would enter/exit your train car regardless of Gastroparesis.  Yes, more people may leave because of GP than otherwise would have, but the people who stayed on the train are in it for the long haul.  They will be there for you no matter what.

So remember, people may move in and out of your life but that is okay.  It is okay to let people go because you are headed different directions.  Appreciate the time that you had with them, but prepare yourself to say hello to the new people entering the car.  There may be more of them than you think.  You might not have seen them enter while you were saying goodbye or while you were sick from the bumpy ride.

~Millie

Traffic Jams Literally Make Me Sick

Posted by Mildred Jane on February 19, 2013
Posted in: Gastroparesis, health, Inspiration, traffic. Tagged: , , , , . 4 Comments

traffic

No one likes a traffic jam.  It doesn’t matter if you have Gastroparesis or are the perfect picture of health, you hate seeing a sea of break lights in front of you.  People from all perspectives of health have experienced road rage and/or wanting to climb out of your skin because you simply cannot spend any more time in your car.

However, I have noticed that as my Gastroparesis flairs have become more common sitting in traffic seems to exacerbate my symptoms.  What may start out as mild stomach cramping will become more and more severe with each push of the break pedal.  Dizziness will start and I will begin to spin.  Nausea will become practically vomiting.  You feel that with each inch that you crawl that more and more energy is depleted.  It is as if with each inch that you crawl that your body thinks it has just ran a mile at record speed.  I was a long distance runner in my younger years and still attempt 5Ks and I can honestly say that sitting in traffic now feels like my body has gone through the equivalent to running a race.  It is a very bizarre phenomenon and I can assure you that it is in a different world than what it “normally” feels like to sit in traffic.

There have been several times that I have almost vomited while sitting in traffic.  There was one time that I actually did.  I could tell that it was coming and that there wasn’t going to be any way to stop it.  I proceeded to do what any GPer would do.  I calmly removed the contents of my reusable lunch bag onto the passenger side floor, opened up the bag, and proceeded to vomit into it.  I then zipped the bag shut, sat it on the passenger side floor, and waved to the busload of people in the lane next to me.

If you search hard enough, you can find a silver lining in just about anything.  My silver lining in this situation was that with Gastroparesis you become so used to vomiting that you have an excellent radar for when it is coming, how much, how long, etc.  You also have excellent aim.  So I may have lost a reusable lunch bag, but at least I didn’t waste any energy cleaning the upholstery of my car!

~Millie

Learning to Listen to Your Body

Posted by Mildred Jane on February 18, 2013
Posted in: Energy, Gastroparesis, health. Tagged: , , , . Leave a comment

listen-to-your-body

On my quest to having an improved quality of life, I have tried almost anything you can think of.  I think that you will find that this is true for most anyone with Gastroparesis.  We want so desperately to have some relief, to enjoy one of our favorite snacks, to enjoy a dinner out with friends and family without stressing about the menu, or to simply have some semblance of our pre-Gastroparesis lives.

An interesting phenomenon has happened to me over the past month.  I am now more in tune with my body than ever before in my entire life.  I can hear it telling me what to do.  (No, it is not the GP elves talking!)  You may think this sounds spacey or new age or just plain crazy.  I would have been right there with you until it started happening.

My hypothesis for how this has happened is through a combination of yoga, digestive massage, energy work, nutritionist meetings, and in some ways this blog.  During my weekly yoga class, I try to focus on nothing other than my muscles and the instructions that are given to us.  During that hour and a half, I shut out absolutely everything else regarding my life and give yoga my all.  I feel all of the expanding & contracting in my muscles.  I focus on my breathing and I keep my thoughts in that classroom.  This week the instructor even commented, “Millie, you look exhausted”.  I was.  I was feeling nauseous and crampy and did not want to get out of bed.  However, I have a friend that meets me at yoga & I didn’t want to let her down.  (The buddy system works!  Especially on cold weekend mornings!)  The feeling I had at the end of that class was absolutely amazing.  My mind was clear and focused.  It was ready to overcome the obstacles that Gastroparesis (and life) were going to throw at me for the week.

Digestive massage and energy work were two items that I started a few months ago.  They have also calmed my mind and helped me to focus on centering my thoughts and paying attention to what my body needs.  I have written about the digestive massages and energy work will be a topic in the future.

The last piece of the puzzle has been this blog.  I am absolutely floored that in less than 3 weeks over 100 people are following this blog and people have viewed it from over 20 countries.  I started this blog as a way to help me heal.  As a way to feel as though I was helping others.  As a way to help other GPers explain what daily life is like to their friends and family.  Sitting down each night to write about the adventure of the day helps me feel like I have found my purpose in life, which is to educate others on Gastroparesis.

Thank you all for taking the time to read this blog & for the support!

~Millie

Going For a Spin! (FINALLY!)

Posted by Mildred Jane on February 18, 2013
Posted in: Energy, Gastroparesis, health, Inspiration, Spinning. Tagged: , , , , , , . Leave a comment

Imacon Color Scanner

Gastroparesis puts a damper on exercising due to the fatigue, nausea, & cramping.  Needless to say exercise and the GP symptoms don’t mix.  However, there are rare glimmers when you feel well enough to get some exercise in.  Thankfully, today was one of those days!

Growing up I was a runner.  I still enjoy running and have completed 2 half marathons despite of Gastroparesis!  They are 2 of my proudest accomplishments.  Both times I was completely overwhelmed with emotion throughout the entire 3 hours of the race to the point of crying off and on.  This has now overflowed into any time that I exercise.

I am fortunate enough to have a spin bike at home so that whenever I am feeling well enough, I can go downstairs, hop on the bike, and quite literally go for a spin!  I needed to remove all obstacles, because by the time I drive somewhere to exercise I could begin to feel ill.  So tonight I was feeling well and was so excited to go for a ride on the spin bike.  As usual with exercise, there were several times during the ride that tears would begin to swell.

Tears come frequently with exercise now-a-days.  They are tears of joy over being able to get some exercise in.  They are tears of sadness over not being able to have exercise as part of my daily routine any more.  They are tears of anger over having Gastroparesis rip so much away from me.  They are tears of revenge for telling GP what for.  They are tears of frustration for there not being a cure.  It is an emotional roller coaster.  With every push of the pedal it is a different emotion.  With every push of the pedal I start to feel a little more “normal”.  With every push of the pedal I feel like I am trying to speed far far away from Gastroparesis.

It feels good to pedal away from Gastroparesis for a night and I will celebrate the accomplishment.  I’ll hold on to this for as many days as I can, because today I won!  Take that GP!

~Millie

Another Community Member Lost

Posted by Mildred Jane on February 16, 2013
Posted in: Friends, Gastroparesis, Rememberance. Tagged: , , . Leave a comment

greencandle

Today we learned that we lost another member of the Gastroparesis community.  A person that I have never interacted with, but will take time to mourn & remember.  Sadly, the number of people we are losing due to Gastroparesis has become more and more common.  There is not a cure for Gastroparesis and extremely limited treatment options.  Individuals with Gastroparesis are quite literally starving to death.

Through on-line support groups, I have made several good friends with Gastroparesis.  These are friends that I will likely never meet in person, but the bond that we have is undeniable.  No one understands life with this condition more than another GPer.  We laugh at the randomness of brain fog, we celebrate each other’s triumphs, and we listen to each other as we struggle to cope with what life has become.

This is why the loss of a member of our community is difficult to handle, even if we have never met the person or interacted with them on-line.  The loss of someone with Gastroparesis is a reminder that there are people quite literally starving to death in front of us.  It is a reminder of what this condition can turn in to.  It is a reminder that medically there isn’t a whole lot we can do about it.

The lack of medical options must change, we must fight to find a cure and treatment options for those that we have lost.  We must succeed in this task.  We must rally together and make our voice heard.

Today we must take a moment to pause and remember all those that we have lost and find a way to push forward through the pain and make our voices heard!

~Millie

Happy Valentine’s Day to the Caregivers!

Posted by Mildred Jane on February 15, 2013
Posted in: Gastroparesis, health, Inspiration. Tagged: , , , . 6 Comments

green-valentine

Happy Valentine’s Day to all of the Caregivers out there!  All of us with Gastroparesis thank you from the bottoms of our hearts.  We might not always tell you just how much you mean to us, but I can tell you that we wouldn’t make it without you.

I’ve talked a lot about what life is like for someone with Gastroparesis, but the caregivers often get lost in the shuffle.  It is difficult for them to watch us suffer so frequently and not be able to make everything all better for us.  The caregivers drive us to and from the doctors.  They bring us medicine and ginger ale while we lay in bed.  They pick us up from the bathroom floor when we are too weak to stand.  They hold us when we need held.  They allow us to cry without giving advice.  They make us laugh when we need a pick me up.  And most importantly, they work all day and all night to help us keep it all together.

The caregivers do all of this while trying to maintain their identity and their lives.  They are extremely selfless and give up so much so that when a GPer has a good day it isn’t spent doing chores.  They know when to give advice and when to let you have a meltdown.  They stand by you as you literally try anything to feel better.  Even if the idea is crazy, they stand by you and tell you to try it.  They help you keep your confidence.  They help you try to find balance in your life.  They help you figure out creative ways to maintain friendships.  They walk the dog.  They make your smoothies.  They let you sleep.  The list goes on and on.

I am extremely fortunate to have one of the best caregivers in the world.  I thank my lucky stars every day for him and honestly don’t think I could do so much in life without him.  He takes care of everything at home so that any “good” hours I get can be spent learning something new or catching up with a friend.  He entered my life about 2 months before I got extremely ill and has never once faltered during any of it.  He immediately came to the conclusion that we needed frequent flyer miles at the hospital!

There aren’t too many men out there who would take you for a colonoscopy within 3 months of dating, then for an endoscopy 5 months after dating, and to a lovely breakfast of radioactive eggs (gastric emptying study) about 1 month after that.  I was lucky enough to find a man that would do all of this AND pick up after those pesky GP Elves leaving everything laying around the house!

~Millie

Getting Creative With Nutrition

Posted by Mildred Jane on February 14, 2013
Posted in: Energy, Gastroparesis, health. Tagged: , , , . 4 Comments

tofu

This evening I had my bi-monthly meeting with my nutritionist.  She is absolutely A-MAZ-ING and a key member of the health team I have created for myself.  I was extremely fortunate to find such an educated nutritionist who truly understands Gastroparesis.

I thought that I knew an okay amount about nutrition, but once I met my nutritionist I realized just how little I knew.  I found out that I was a nutritional idiot.  Our meetings are spent discussing nutritional quantities in foods and creative ways to meet my nutritional intake.  She truly understands which foods I can and can’t eat with Gastroparesis.

There are many food limitations with Gastroparesis.  The baseline is the same for everyone but each person’s body reacts differently to almost every food you can think of.  Each person’s body reacts differently from month to month for every food item.  The baseline items that everyone with Gastroparesis has to say goodby to are: uncooked veggies (bye bye summer salads!), nuts unless they are completely pureed into a nut butter (bye bye chunky peanut butter!), extremely limit your intake of read meat (bye bye steak & hamburgers!), anything overly acidic is gone too (bye bye tomatoes, oranges, lemons, etc!).  Our stomachs also can’t break down foods with small particles (bye bye corn, celery!)  And for me personally, I’m also working to eliminate all chemicals.  Virtually all processed food is gone at this point (this is just a wise health choice for anyone).

Needless to say, all of the above can lead to severe nutritional deficiencies.  You find alternative options  for protein, calcium, potassium, and virtually anything else.  You find foods that are jam packed with nutrients so that you limit the amount of food going into your body so that your stomach has less work to do.  It is amazing how many foods are jam packed with essential nutrients but also take up minimal tummy space.

Did you know that 1 container of Greek Yogurt is jam packed with 15 protein?  Imagine, 1 little container of soft food can become your breakfast and kick your day off with a protein boost.  Another amazing food for me?  Tofu! (GMO free, of course!)  Tofu is easy to digest and a measly 3 ounces of it  is packed with 7 grams of protein.  This is why I started adding tofu to my smoothies.  You might be asking yourself, “Why doesn’t she just use protein powder?”  Well, the answer is quite simple:  whey protein powder came dangerously close to sending me to the Emergency Room twice and caused me to be down for the count for several days.  However, thanks to my amazing nutritionist, I discovered Hemp Protein powder.  It is easier on your stomach and has worked great for me.  I add it to some of my other smoothies.

Potassium was another issue for me until I found coconut water.  A mere 8 ounces of coconut water contains 470 mg of Potassium!  So let’s add that to the smoothie too!  I would venture to say that my smoothies are more nutritionally balanced than any meal that a “normal” stomach person eats with solid food.

It has been a fun experience learning so many creative solutions to maintaining my nutritional intake without more than one solid meal per day.  Over the past couple of months I have learned to celebrate these nutrient rich foods instead of mourning the foods I can no longer have.  Once you let go and allow this shift to occur, you begin your path of mental healing.

My only hope is that my GP sister, Marie, has found a creative way to have a birthday cupcake today!  I wish her all the best & am so glad to have met her (even if it is only on-line)!

~Millie

PS…I am NOT a trained medical professional & any changes to your diet should be discussed with your doctor.

Being Sick Is Not the Same as Being Busy

Posted by Mildred Jane on February 12, 2013
Posted in: But you don't look sick, Energy, Gastroparesis, health, Inspiration. Tagged: , , , , . 7 Comments

Gastroparesis throws your entire life a curve ball.  EVERYTHING changes:  your diet, your sleeping patterns, your morning routine, your social life, your professional life, your level of physical activity, you name it.  I have scoured my brain and can not think of one aspect of life that does not change once Gastroparesis begins to take over.  As much as you try to continue being “normal”, it isn’t going to happen.  You are kicked right out of the fast lane onto a beaten up wooded path that not many people know about or care to find.  You have to learn how to navigate this path and hope that you can find your purpose life.  The purpose that you are meant to pursue while living through the ups and downs of Gastroparesis.  While on this path, there are many times that you feel like the image below.  You are unrolling the path by yourself and have no idea where it is going.

the-road-less-traveled

Perhaps one of the most frustrating comments that could be made to someone with Gastroparesis (or someone with any chronic illness) is the following:  I’m not sick but my life is busy too.  There are many reasons that this type of comment is frustrating.  The first is the insinuation that sick life is busy life.  Yes, it is busy running to and from doctors’ appointments (yes, plural doctors).  Appointments that tell you the same thing every time: there isn’t anything we can do for you.  (This is if you are lucky enough to have a doctor correctly diagnose you, which could take years.  More on this in future blogs.)  Yes, you are busy cancelling plans with friends and family so that you can vomit for hours or lay in bed with severe stomach cramping.  Yes, you are busy hanging out with the GP Elves while you stare at a wall because your brain has stopped functioning.  I guess this is busy and could be equated to the someone who is busy in the fast lane continuing on the path they set out for.

Another reason why this type of a comment is frustrating is that somehow this is a equal comparison.  Somehow choosing to live a busy life is equal to being dealt an incurable disease which is not understood and has extremely limited treatment options.  That somehow being busy with work events and social outings is comparable to giving the majority of that up to go to doctors’ appointments, explore alternative healing methods, or to be incapacitated.  I did not choose to have Gastroparesis.  In fact, doctors do not know what causes Gastroparesis for most of us.  This is called Idiopathic Gastroparesis, which is what I have.  I did not choose this life, but am making the most of it.  However, the people that make these types of comments choose to have a busy life.  There really is no comparison.

The last reason that I will discuss about why this comment is frustrating, is that once the frustration level settles down you realize that the people saying these types of things just don’t get it.  They don’t understand that your life has had an upheaval on a massive scale and that no part of your life has gone untouched.  They don’t understand that a basic function of life, eating, just doesn’t happen for you without significant planning.  They don’t understand that you are trying anything to barely stay afloat.  They don’t understand that you are trying anything for just a few hours of feeling better.  They don’t understand that you have to focus the majority of your time on how to minimize being sick.  They don’t understand just how often you are sick.  They don’t understand that you can’t shower because it will use up all of your energy needed for the day.  They don’t understand that you aren’t “busy” because you choose to be, but scrambling like a rat in a cage trying to break free.  Even if you can break free for only an hour, it will be the best hour of your life.

~Millie