gastroparesis

All posts tagged gastroparesis

Kicking Some Gastroparesis Butt!

Posted by Mildred Jane on May 7, 2013
Posted in: Energy, Exercise, Friends, Gastroparesis, health, Inspiration, Life, running. Tagged: , , , , , , , . 6 Comments

Somehow, someway, I managed to cross the finish line on Sunday even if it was hopping on one foot!  I was so thankful that my Gastroparesis did not flair up during the half marathon and my tummy actually seemed to do pretty well.  However, I cannot say the same for my knee & IT Band (the muscle that connects your hip to your knee).

Below is a photo of my actual race shirt, finisher’s medal, runner’s bid (with customized name), & trusty iPod.

marathon

My race shirt always gets comments during a race.  It comes at no surprise that I have to take things slow and occasionally walk due to Gastroparesis, so this leaves plenty of time for other people near me to comment on my shirt.  This race was no exception.  During the race I received at least a half dozen comments about my shirt.  It gets so emotional to be plugging along at a slow pace and have people say “cool shirt”, “thanks for awareness”, “you can do it”, etc.  The majority of society does not realize what a major accomplishment it is for someone with Gastroparesis to be able to complete a half marathon.  They do not realize how difficult it is for you to keep the proper nutrition in your system to keep your body going.  They don’t realize how a flair up can scrap all of the training that you have had to that point or that a flair can prevent you from training at all.  This is why I get emotional every time someone comments on my shirt.  It makes me realize that there are some people out there that “get it”.

My shirt also makes it easy for others to pick me out of a 30,000 person crowd.  In my starting coral for the race (the area where you wait for the starting whistle to sound), I ran into a good friend of mine who was fun to chat with while waiting the 30 minutes for the race to start.  I also had a former high school teammate see my shirt and gave me a big hug prior to the start of the race.  She said that she was so proud of me for continuing to run and that I was an inspiration.

Then the race started.  It started out pretty rough because I went at too fast of a pace but then had a 3 mile stretch where everything was going pretty well.  It was a gorgeous day to run, there was a lot of energy from other runners and the crowd, and my iPod was shuffling to the best songs possible.  I was even on pace to meet my goal time.  Then my legs started to cramp rather badly.  I attribute this to a couple of items:  lack of training due to GP flair ups & lack of proper nutrition due to GP.  Both of my calves were stiffening up and I could barely walk.  This occurred around mile 8 with 5 more miles to go I contemplated giving up and stopping.  Then the band along the course started playing some Johnny Cash.  So thank you grandpa for once again cheering me on to keep going!  Hearing Johnny Cash, missing my Grandpa, and feeling horrible pain in my legs made me an emotional mess.  I think that I cried for the next mile.

Thankfully a good friend came out to cheer me on and was around mile 9.  She saw me coming and gave me a big hug as I was crying.  She told me that I could do it and that I could make it.  So I dug deep and kept going.  This is where Gastroparesis is a bonus.  Gastroparesis teaches you how to dig deep and keep going in spite of being an absolute emotional wreck.  You have to keep going in life, you have to keep fighting to maintain your life so you learn to block everything else out and keep going.  Gastroparesis flairs are also extremely painful so I suspect GPers have a higher pain tolerance than most.  I also got extremely angry at GP for taking my training schedule away from me and this gave me some extra fight to make it to the end.

However, on the last mile my knee gave out.  (In high school I had screwed my knee up pretty badly and it has given me problems off and on ever since.)  After all that I had been through for the preceding 12 miles, I was not about to let my knee stop me.  I had to finish this race or it was going to be a HUGE mental blow for me.  A mental blow that was going to take awhile to overcome.  So I hobbled and half hopped my way to the finish.

I found my amazingly supportive boyfriend, who gave me a huge hug while the floodgates of pain & emotion opened up.  It really takes a special person to encourage someone to keep doing this in spite of the pain and emotional turmoil.  Most people would tell you to quit or take it easy or that you are nuts.  Yes, I am nuts but it takes someone special to realize how even though my body goes through hell, that I need the emotional victory of finishing more than I need my body in tact.

So now, after a visit to an orthopedic surgeon, I am due for a month of physical therapy to repair my damaged IT band.   It will be a great opportunity to educate another portion of the medical community about Gastroparesis!

Thank you all for the support & encouragement.  Your comments (and songs) were running through my head as I fought to finish my 13.1 miles!

~Millie

Suggest a Song to Cheer Me On!

Posted by Mildred Jane on May 4, 2013
Posted in: Energy, Exercise, Friends, Gastroparesis, half marathon, health, Inspiration, Life, running. Tagged: , , , , , , , , . 4 Comments

running-woman-music-notes

Okay everyone!  It is time for some audience participation!  Are you ready?  I hope so! 

As mentioned yesterday, I am preparing to complete my third half marathon tomorrow!  I’ve received several notes of encouragement from my fellow GPers and was wishing that you could all be along the course route to help cheer me on.  As I was updating my iPod, I realized that you can be along the course!  You can be there through music. 

Here is my request (aka crazy idea which I personally think is awesome)…send me one upbeat song to add into my iPod for the race tomorrow.  Then tomorrow when the song comes on, I will think of you & my entire Gastroparesis family that is cheering me on from all over the world.  I have no doubt in my mind that hearing songs suggested by you will help giving me the extra boost to keep putting one foot in front of the other and finish the race. 

Music has always given me an extra boost while running.  Sometimes the right song can make all the difference in pace and determination.  It can help you stretch your stride out.  It can help you control your breathing.  It can help you remember that even though you are slow that you are still accomplishing something amazing.  It can help you control the tears of emotion.  It can remind you of just how many people have your back.

Tomorrow I will be will be wearing my Gastroparesis race shirt that states “At Least I’m Faster Than My Stomach” and hopefully my iPod will be full of songs that are the voices of my GPer family cheering my on!

Looking forward to seeing what will be on the playlist!

~Millie

One Foot In Front of the Other

Posted by Mildred Jane on May 3, 2013
Posted in: Energy, Exercise, Gastroparesis, GERD, gluten free, half marathon, health, Inspiration, Life, running. Tagged: , , , , , , . 6 Comments

A female road runner runs down a road at dusk at Independence Pass.

After a brief hiatus, most people would say that they took time to stop and smell the roses.  I did do some of that but most of this week was spent preparing for 13.1 miles of insanity on Sunday.  That’s right, I might have Gastroparesis but I’m still going to cross the finish line of a half marathon on Sunday!

I was always a runner growing up and it is in my blood.  I was never extremely fast but have learned the insane ability to get over the mental hurdle of physical endurance and pain.  There are times that I attribute growing up running long distance for my ability to remain positive amongst the pain of Gastroparesis.  When you are running for 2-3 hour long practices, you definitely learn the ability to have mind over matter.  There are times when this is easier said than done, but in general you have learned the odd skill of being able to torture yourself.

Last year I was able to complete 2 half marathons and was incredibly proud of myself.  I even had a race shirt made that says “At Least I’m Faster Than My Stomach”!  It is quite the conversation piece back amongst the slow pokes of the race.  There are periods of each race where I must walk due to Gastroparesis, but I don’t mind because I am proud of myself for being out there.  This are also the points in which other walkers ask me about my shirt and are in complete shock that I have a screwed up stomach and am still out there.  It always brings some tears to my eyes and I doubt that there will ever be a time that it won’t.  It means so much to be able to educate while taking on such a lofty goal.

My first half marathon was last year at this time.  I was quite ill for the months leading up to it and was not able to train.  I was worried and confused as to whether or not I should still attempt it.  My wonderfully supportive boyfriend egged me on to give it a shot.  (We are both competitive in a fun manner and I wasn’t about to see him with a medal and miss out on mine!)  There were several times during the race that I thought I was going to have to drop out, but then I would hear a Johnny Cash song coming from a band along the route.  He was one of my grandpa’s favorites.  My grandpa had recently passed away and we were extremely close.  I felt that all of the Johnny Cash songs were my grandpa also egging me on to keep putting one foot in front of the other and cross the finish line.  (Really? What are the odds of 5 out of 6 bands playing Johnny Cash?)

This also got me thinking about Gastroparesis.  We have to keep putting one foot in front of the other and keep moving.  We have to keep fighting to find treatment options and cures.  We have to keep putting one foot in front of the other to try to remain positive.  We have to keep taking steps to try to maintain some “normalcy” in life.  We have to keep moving both physically and mentally.  It might seem like the race will never end, but one day it will.  Hopefully it will in our lifetime!

So my 13.1 miles on Sunday will be dedicated to all of the GPers and all of you will be in my mind as I keep putting one foot in front of the other!

~Millie

My New Obsession: Aqua Aerobics

Posted by Mildred Jane on April 27, 2013
Posted in: Energy, Exercise, Friends, Gastroparesis, health, Inspiration, Life. Tagged: , , , , , , . 2 Comments

Aqua Aerobics

Okay, for these who have been following my Adventures with Gastroparesis will not be surprised when I say that I’m not shy about trying know things.  I learned years ago (prior to Gastroparesis) to view everything in life as a life experience which will at minimum make you a more rounded individual.  It will also give you more topics to discuss and provide you the ability to strike up a conversation with people from all different walks of life.

The pursuit of life experiences has had me intrigued by aqua aerobics for awhile now.  Due to all of my running, my joints get sore easily and I have a knack for overdoing it.  Then my mom started taking aqua aerobics for her physical therapy for a hip replacement (hi mom!)  She was telling me about the classes which made me even more interested.  They classes seemed to be really helping her and let’s be honest, they just sounded like fun.  I don’t know how to swim, but I wasn’t going to let that stop me!

As it turned out, my gym offers aqua aerobics at one of their other locations nearby.  It was time to see how Gastroparesis did with this adventure.  I was optimistic because it was much less impact on the body but still got your juices flowing.  As it turns out, one of my good friends has also been intrigued by aqua aerobics for a long time.  This meant that I had a partner in crime and would help keep me accountable for going to class.

Today was our first class and it was a blast!  We were at least 30 years younger than the majority of the class but all of the ladies were so nice.  They also can run pretty fast through a pool!  The class was just as I had hoped.  My muscles feel like they have been used, the blood is flowing, and it gave me an energy boost.  All of this came without the joint pain that usually accompanies such workouts and it was just plain FUN!  When we were holding on to the side of the pool kicking our feet, I felt like I was a little kid until I realized we were going to be doing it for awhile.

If anyone has access to a pool, I would definitely recommend going and at least walking back and forth in it.  It loosens up your muscles and makes you say:  Take that GP!

Now if those pesky GP Elves wouldn’t have stolen my underwear out of my duffle bag for my return trip home!

~Millie

PS…My swimsuit & belly cooperated for the majority of class!  YEAH!

Wash Off the Funk

Posted by Mildred Jane on April 26, 2013
Posted in: Energy, Gastroparesis, health, hygeine, Inspiration, Life. Tagged: , , , , , . 4 Comments

Anyone with Gastroparesis has been there.  The time when you start to come out of a flair and you realize just how “funky” you are.  (And I don’t mean funk in a good way, but in a smelly way!)  You wonder…how…on…earth…have I become this stinky.  What happened the last few days?  Did the GP Elves throw me into a pile of used gym clothes?  Did they spray me with “sweaty luxury” perfume?  Is this smell coming from me or the dog?  Can I pretend that it is the dog?  Did Pig Pen have Gastroparesis?  He sure exemplifies what we look  and feel like at the end of a flair!

pigpen

It is AWFUL!  During a flair you have limited energy and there are certain things that just still have to be done.  This means that you don’t want to spend precious energy getting a shower.  You also know that if you attempt to get a shower that you might collapse from exhaustion at any moment.  Then you not only have an issue with a Gastroparesis flair up but also the issue of a cracked open head.  Hmmm…I wonder which is worse….hmmmm.  Okay, staying on target.  (The GPers out there, know just how difficult it is to stay on target at the end of a flair.)

Today, I FINALLY had enough energy to get a shower.  Although there was not enough energy left to dry my hair, so into the ponytail it went.  I think that I have somehow lost 5 pounds in pure “funk”.  My skin is rejoicing the fact that it can breath again!  You might think that I am exaggerating, but anyone with Gastroparesis will tell you that I am not.  You quite literally wake up one morning and think “was that all a weird dream”?  Did someone take over my life for a few days?  It is one of the most bizarre experiences that you can have.

It was amazing that once I washed the Gastroparesis funk off of me how productive I was today.  I was on a roll and smelling great!  I’m anxiously awaiting my first aqua-aerobics class with a friend tomorrow and I’m sure she will thank me for not having a ring of filth surrounding me in the pool.  Although I will make NO guarantees about my swimsuit and Gastroparesis belly combination!

~Millie

 

Staying Positive Through a Setback

Posted by Mildred Jane on April 25, 2013
Posted in: depression, Energy, Gastroparesis, health, Inspiration, Life, Make A Difference. Tagged: , , , , , , . 8 Comments

chinup

No matter how much you think you have Gastroparesis beat, you never fully do.  There will always be a setback that hits you.  For me, it always seems to be when there is a large shift in the weather.  It is so incredibly frustrating to be on a good path and then something completely out of your control throws a wrench into the whole scheme.  It’s in these moments that I hate Gastroparesis the most.  It’s in these moments that I struggle to stay positive and keep fighting.  It’s in these moments that I have a hard time fending off the depression and self-doubt.  Today has been one of those moments.

The weather had a giant shift yesterday which wreaked havoc on me and my Gastroparesis.  I have been fatigued and this morning had extremely horrible stomach cramping.  I stand by my acupuncture post from yesterday, because even though I faced this setback I noticed that my body is bouncing back faster than it did before the acupuncture treatments.  It still doesn’t bounce back as quickly as I would like, but something is better than nothing.

This morning was not only filled with fatigue and severe stomach cramps but was also filled with self-doubt and depression.  What is my point in life?  Why was I changing my diet, taking supplements, blending my food, getting acupuncture just to remain sick?  Why do I always have to get sick?  Why don’t more people know about Gastroparesis?  Why keep fighting it?  Is the blog really helping anyone?  Should I keep doing the blog?  The list goes on and on and on.  These moments are EXTREMELY difficult to pull yourself out of.  Once the snowball starts rolling it takes a giant yeti to make it stop.

Somehow, someway I was able to get the snowball to stop.  Maybe it’s because I had to force myself out of bed to get some work done..  Maybe it’s because my dog was insistent that I needed all the kisses she could give me.  Maybe it’s because I saw an adorable photo of my friend’s baby in a safari hat.  Maybe it’s because my amazingly calm and supportive boyfriend was saying all of the right things.  Maybe it’s because I know I’m meant to make a difference for the Gastroparesis community.  Whatever the reason was, I was able to slowly snap myself out of the funk today.  I’m not fully out of it but still slowly getting there.  I saw the image for today’s blog & I think it will be my new motto:  Chin up buttercup!

Ever since I found the image, I’ve been telling myself this over and over.  It seems to be working.  I’ve thought of additional ideas that I can do to expand the blog to more than just my daily posting about life with Gastroparesis.  I’ve thought of some possible ways to arm others with copies of the Advocacy Binder.

I’m excited about the future and hoping that you will be too.  I’m hoping that you will like the changes coming soon to Adventures with Gastroparesis!

Never give up & keep your chin up!  We will find a way to make our voices heard, just you wait & see!

~Millie

Acupuncture has Changed My Life

Posted by Mildred Jane on April 24, 2013
Posted in: Acupuncture, bloating, Diet, Energy, Gastroparesis, GERD, health, Inspiration, Life. Tagged: , , , , , , . 2 Comments

Acupuncture1

As mentioned in previous posts, I will try almost anything in an attempt to feel better.  Hands down, the best thing I have tried is acupuncture.  (Gluten-Free is running a close second.)  I was going twice a week to start and felt the benefits almost immediately.  My reflux was lessening.  My nausea was diminishing and I was developing more energy.  I was also noticing a reduction in bloating.  I would still become severely bloated but the bloating was not as painful.

Now I am going once per week and am still noticing a benefit from the acupuncture.  I notice that I am actually hungry after a session.  Hunger is something that doesn’t happen very often for me.  I also feel more grounded and as if my head is in a better place not only for battling Gastroparesis but also for life in general.

My acupuncturist is wonderful.  He really takes the time to get to know the issues that I have in order to formulate a treatment plan for me.  He has also suggested some dietary changes that would work hand in hand with Chinese medicine and the healing process.  Oddly, almost all of these recommendations matched what my nutritionist had told me.  The acupuncturist also loves to hear feedback on how my body reacted over the week so that he can assess which treatment options are working best for me.

For anyone with Gastroparesis who would like to try acupuncture, I would say GO FOR IT!  Make sure that you do your research and find a credible acupuncturist in your area.  I would be skeptical if he/she did not ask several questions and really get to know your chief complaints or want feedback on how your body is reacting.

If you have been worried about the needles, do not!  When I get an IV, I squirm like there is no tomorrow, try to curl in the fetal position, and turn ghostly white.  However, I haven’t had an issue with the acupuncture needles at all.  They are so tiny that you will barely feel them.

I am curious if others have tried acupuncture and what their reaction is?  It seems that more and more GPers are giving it a shot.

~Millie

On Cloud Nine!

Posted by Mildred Jane on April 22, 2013
Posted in: Gastroparesis, health, Inspiration, Life, Make A Difference, Politics. Tagged: , , , , , , . 5 Comments

number-9

Today I am on Cloud Nine!  It was a great day for Gastroparesis.  As many of you know, today I was meeting with my Congressman about H.R. 842.  The meeting was a HUGE success and he is going to cosponsor the bill!!!  There wasn’t even a question in his mind that it was what needed to be done.

In preparation for the meeting, I had created an advocacy binder which was extremely well received.  The Congressman indicated that the binder was one of the best he has ever seen.  He has been in office since the 90s, so I’m sure he has seen a few binders in his day.  The complement on the binder meant almost as much as him cosponsoring the bill.  I had poured A LOT of time, energy, & money into that binder and the last thing I wanted to have happen was to have it go straight into the trash after my visit.

This whole experience has been amazing and I am putting my thinking cap on as to the best way that I can help others advocate for Gastroparesis.  I’m not quite sure if I can afford to print binders for everyone and am VERY OCD about presentation & packaging so I’m not sure about posting it all on-line.  It is copyrighted to Adventures with Gastroparesis, so I want to make sure that the production quality remains top notch.  Trust me, I WILL find a solution for how to get advocacy binders into the hands of GPers so that we can continue to make our voices heard.

Now it’s time to go celebrate with an acupuncture appointment to pop this bloated stomach of mine!

~Millie

Meeting a Congressman About Gastroparesis

Posted by Mildred Jane on April 21, 2013
Posted in: Gastroparesis, health, Inspiration, Life, Make A Difference, Politics, Uncategorized. Tagged: , , , , , , . 5 Comments

United States Capitol Building

This weekend has been beautiful outside but I have been happily sitting at my laptop preparing a binder about Gastroparesis for my meeting with my Congressman tomorrow.  All in all, I am quite pleased with how the binder has turned out.  It includes a lot of great information about Gastroparesis from a variety of sources.

I am now working on my talking points and the order I want to present them in.  Practicing some of the statements has made me quite emotional.  It is so hard to not have your voice quiver when talking about how people are quite literally starving to death due to a lack of a cure and treatment options.

It’s difficult to talk about finding your Plan B in life and continuing to pay the bills.  Talking about how your life has been quite literally turned upside down and all of your priorities have changed.  Things that once seemed so important now seem so trivial.  Discussing how this shift has cost you your relationship with what were once dear friends and even your own family.  Describing what it is like to have people disappear from your life because they don’t know what to do with you.

It’s also emotional talking about all of the new people that have been met due to Gastroparesis.  People that are some of the strongest people I know.  People that have overcome some that most amazing obstacles.  There are also the caregivers who never complain and keep trying to help us in the best ways that they can.

Gastroparesis brings together people from all backgrounds into one unified voice.  A voice that needs to be heard & I’m more than thrilled to be speaking to my Congressman tomorrow on behalf of all of us.

Now it’s time for me to get back to it so that I can represent tomorrow!

~Millie

Feeling Normal?

Posted by Mildred Jane on April 17, 2013
Posted in: Gastroparesis, health, Life. Tagged: , , . 2 Comments

feeling

Does anyone with Gastroparesis actually remember what “Normal” feels like?  When I think back, I’m not sure if I have ever fully known what “normal” is.  When I was in elementary school I was hospitalized for some time to figure out what was mysteriously going on with my non-stop vomiting & stomach cramping.  Fast forward to my junior year of high school and I had my first endoscopy.  Fast forward again to my freshman year of college and a friend rushing me to the emergency room because I couldn’t stop vomiting.  Fast forward some more and another endoscopy and my first gastric emptying study (more about these in future blogs).  Fast forward again and a colonoscopy, endoscopy, and another gastric emptying stomach.  Sprinkle in a ton of IVs and that in a nutshell has been my life.

Granted I had periods of not being as ill as other periods.  However, every four years it was as if my body had completely shut down.  It was bizarre how it occurred on such a cycle.  I’m not sure if others with Gastroparesis have experienced this.  To my knowledge I have not heard of anyone else encountering this.  All of my friends growing up know that emergency room visits to stop vomiting were a way of life with me but somehow I was able to lead a fairly active life.  I ran cross-country, marched in the marching band, acted in plays, sang in the choir, was an the honor roll, and spent plenty of times with my friends.  I weighted a wopping 95 pounds which resulted in anorexic accusations (more on this in future blogs).

In college, I was somewhat better with my health and also remained active.  However, there were plenty of ER visits.  Then somehow in my 20s I was able to lead a semi-normal life.  I had minimal symptoms and felt pretty good.  It was odd.  Then my health tanked for awhile and I had my gallbladder removed (it was barely functioning so there was also a dye test).  I felt better for a handful of years and then a couple of years ago I tanked like I had never tanked before.  This resulted in the endoscopy, colonoscopy, and gastric emptying study and then a diagnosis for all of this:  Gastroparesis.

I went to a really dark place for awhile at the thought of the permanence of all of the this.  Depression is an understatement.  Pain is an understatement.  Sometimes vomiting to the point of losing my voice.  It was hell.  Then somewhere around the beginning of this year I began to turn it around mentally and try to figure out any and all ways to have some relief.  Things are starting to turn around.  I have no idea how long it will last, but I am going to enjoy every minute of it I can get!

But let’s recap the medical procedures I have had done in 35 years time:

  • 3 Endoscopies
  • 1 Colonoscopy
  • 2 Gastric Emptying Studies (mmm…radioactive eggs)
  • 1 Radioactive Dye Test
  • EKG (for approval for Canadian medicine)
  • Numerous Barium Shakes
  • Numerous Digestive X-Rays
  • Countless Stool Samples (nothing quite like sitting in a lobby holding a bag of your own excrement)
  • Countless Blood Draws (usually 6-7 large tubes 4-5 times per year)
  • Countless IVs (6-7 last year alone)

Sadly, this list doesn’t even begin to compare to most GPers.  I’ve had it pretty good, so that is saying something about what life with Gastroparesis is like!

~Millie