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

 

Spinning Out Frustration

Posted by Mildred Jane on April 16, 2013
Posted in: depression, Energy, Gastroparesis, health, Inspiration, Life, Make A Difference, Spinning. Tagged: , , , , , , . 16 Comments

Spinning2

Let me start out by saying that the photo above is false advertising.  No one looks that good in a spin class.  Sweat is dripping everywhere.  It smells.  People are grunting.  If there is a pause in the music you hear people sucking wind.  People’s bangs are sticking straight in the air because the people can’t handle having them on their forehead anymore and there is enough sweat to spike them straight into the air.  Oh wait….that’s just me and I don’t care!  I have Gastroparesis and am just happy to be there.

Okay, I’ll fess up.  Several people are looking like a hot mess in spin class, but only I have the spiked bangs.  I think that I might bring back the 80s headband.  As I mentioned, I’m just happy to be there.  Today I had A LOT of frustration to get out of my system.  Frustration over how so many people are fighting Gastroparesis and in constant pain.  Frustration over the lack of treatment options for Gastroparesis.  Frustration over the lack of knowledge of Gastroparesis.  Extreme frustration about how we receive this diagnosis and then basically told to “live with it” with no end in sight.

All of this was going through my head and the more frustrated I got, the faster I went.  I was wishing that if I could pedal fast enough that a cure would magically appear for all of us.  It is still absolutely mind boggling how in this day in age we are just left to the wayside to fend for ourselves and frequently treated by the medical profession as if we are a bother.

I know that there are A LOT of GPers struggling right now.  My heart breaks when I read some of the posts about how debilitating Gastroparesis can be.  About how the medical bills pile up.  About how our lives have been ripped away from us and we have to sort out a Plan B.  I wish that I could give everyone a big hug.  I wish that I could pedal us a cure.

However I do know this.  My Gastroparesis is mild compared to most (which in and of itself is mind boggling, because I know how bad I get.)  This means I have more energy available to fight for us.  A fight that I take extremely seriously.  I promise all of the GPers having a bad day that I have so much fight in me that I am on a mission to make Gastroparesis a household name so that one day we can have better lives.  Do NOT give up hope (I know this is MUCH easier said than done on some days).  We are a strong group of people and we are determined to have our voices heard and make a change!

~Millie

This entry is dedicated to Kristi Jewel.  You are stronger than you know!  🙂

Define Your Legacy

Posted by Mildred Jane on April 15, 2013
Posted in: Gastroparesis, health. Tagged: , . 2 Comments

legacy

Sadly our world was struck with another tragedy today.  As the events of Boston unfolded, I was jolted on so many emotional levels.  My thoughts went out to all of the runners, spectators, volunteers, servicemen, family, and friends.  No one expects anything like this and no one expects it at the end of 26.2 miles.

I immediately thought of a Gastroparesis runner, Malinda Hill and her twin sister who were in Boston today.  Thankfully her twitter indicated that they are both okay.  We have never met or talked on the phone.  We have only exchanged a few tweets about running with Gastroparesis & encouragement to each other, but she was the first person I thought of.  My immediate second thought went out to all of the runners I knew who had friends in Boston.  A good friend of mine had several of his running partners there.  Thankfully all accounted for.

Another jolt to my emotions which developed later was thinking about how a marathon is an extremely draining experience.  In spite of Gastroparesis, I was able to complete two half marathons last year and am scheduled to complete three half marathons this year.  I found myself to be completely drained both emotionally and physically by the end of a mere 13.1 miles.  I cannot fathom what it would feel like to add the additional stress of trying to process what is happening, find your loved ones, and update your friends and family.  It really makes you stop and think.

It makes you stop and think about what your purpose is in life and if you are achieving it.  If you are going on with your life and tragedy strikes have you left the impression on the world that you wanted to leave?  Have you achieved your purpose?  What will your legacy be?  This is when I can honestly say that I am thankful for Gastroparesis.  It has provided me with a clear purpose in life and I want my legacy to be making a change for Gastroparesis.  I am hopefully that through all of the Gastroparesis groups out there, that we can band together and make Gastroparesis a household name in our lifetime.

There are so many additional emotions going on about this experience, but I think sharing two is enough.

My thoughts go out to all of those involved and I hope that everyone is able to locate their friends and family!

~Millie

Success With Gluten-Free Vegan Bread Baking!

Posted by Mildred Jane on April 14, 2013
Posted in: blogging, Diet, Gastroparesis, gluten free, health, Inspiration, Life. Tagged: , , , , , , . 1 Comment

bread

Yesterday I was really wanting a grilled cheese sandwich but did not want to stray from Gluten-Free April.  In the past I have tried the gluten-free bread contained at grocery stores and have not been impressed.  I knew that the internet was a great resource so I focused my mind on finding a gluten-free bread to bake.

Fortunately, I found a recipe which received rave reviews so I was willing to spend the money on ingredients in order to try it.  Yesterday morning I drove around town and collected all 5 of the necessary flours as well as additional ingredients.  (Fortunately, I live in a major city which makes this task easier.  I also live near a local health food co-op which makes this task even easier yet.)  As I started filling my basket with ingredients I was becoming filled with delight.  Would I be able to have grilled cheese?  Would I be able to take bread camping so that I could have a small sandwich?  Would I be able to take a sandwich through airport security so that I could have a snack?  Would I have the discipline to measure the ingredients exactly so that I didn’t mess it up?  (This was EXTREMELY clear on the bread recipe and I have a talent for eye-balling my measurements.)

I answered YES to all of the above questions and proceeding to walk to the check out (getting distracted by strawberry plants along the way).  As the ingredients were being scanned, I saw the total on the cash register growing and growing and growing.  My goodness this was going to be an expensive loaf of bread!!  I started to have buyer’s remorse because I also knew how much acupuncture, supplements, IVs, etc cost.  However, the remorse was short lived as my boyfriend saw the look on my face.  He gave me a hug and said “It’s start up costs.  You’ll get much more than 1 loaf of broad out of this.  It’s also an investment in your future health.  With the exception of the non-super Vitamin D super pill, gluten-free has been giving you more energy and less nausea.”  He saw the smile come back onto my face and the pep back in my step, so he felt the need to add “you still have to be calculated with your measurements so you don’t waste a batch.”  (We like to jab at each other, so I took it in stride!)

We got home from the store and I began ever so carefully measuring my ingredients.  I leveled the measuring cups off with a fork and pretended that I was a combination of a cooking show host or a mad scientist.  When it came time to stir the dry and wet ingredients together, I had to call in my assistant to stir.  I didn’t want to use all of my precious energy on stirring the bread dough because it was rough!  At this point I was thinking to myself, “If people only knew what we went through to try to stay semi-normal and what we would do for a sandwich.”  This was followed with the thought, “That’s right.  They can know what we go through for a sandwich because I’ll be writing about it in my blog.”

This blog has been such a source of frustration release for me.  I felt like people really didn’t understand what life was like with Gastroparesis.  Then one day it dawned on me:  how could they understand?  How could they understand if no one talked about the craziness of our daily lives publicly?

Sorry, I digress (much like being distracted by the strawberry plants in the store).  The bread was a HUGE success.  It was soft, moist, and delicious.  It wasn’t the same as Wonderbread, but it had much more flavor.  I actually think it was better.  It didn’t survive the grilled cheese as well as I had hoped, but it will be great to taking camping and make sandwiches!

~Millie

The bread recipe can be found here:  http://www.nourishingmeals.com/2009/04/best-gluten-free-vegan-sandwich-bread.html?m=1

Now I am on the hunt for a cupcake/icing recipe!

Vitamin D Super Dose Isn’t So Super

Posted by Mildred Jane on April 12, 2013
Posted in: Diet, Energy, Gastroparesis, health, Inspiration, Life, supplements. Tagged: , , , , , , , . 2 Comments

vitaminD

Who ever said, “there is no such thing as a good thing” was never prescribed 50,000IU of Vitamin D.  For those of you who have not insanely researched Vitamin D, let’s just say that 50,000IU is considered a “super dose”.  Let’s also stop and think about how large of a number 50,000 is.  This is the new wave of prescription for those of us with a severe Vitamin D deficiency, take 50,000IU once per week for 12 weeks and then woohoo…your deficiency is cured!

However, Gastroparesis means that your stomach does not digest things properly and it takes a looooong time.  So does anyone have a guess as to the solution for the following equation:

slower than a turtle in mud stomach + insane super dose of Vitamin D = ?

Did you guess, “One screwed up body”?  Ding…ding…ding…we have a winner!  I have been sleeping 12-14 hours per day since I took my super dose of Vitamin D.  I also am having a difficult time staying awake for more than 3-4 hours at a time.  I’m not a medical professional so I have no medical way of saying if these two items are directly related, but I can’t find another logical conclusion.  I scoured the internet and only found a small handful of people with the same complaint in regards to these “super doses”.

I would say that I am the most in tune with my body than I have ever been in my life and I have a gut feeling that the super dose screwed me up.  I always say that I have a gimpy gut that’s 99% accurate.  It really is quite phenomenal.  It seems logical to me that a smaller dosage spread over an even number of time would have a better result for me.  This meant that last night was spent searching the internet for a good D3 supplement without fillers in a gluten-free, dairy-free casing.  (No easy fete!)  This also meant that I was scouring the internet for a coupon for the supplement that I found.  (As mentioned before, Gastroparesis is not a cheap disorder to have and every little bit helps.)

So today I am going to do what almost every GPer before me has done.  I’m going to adjust my treatment from what my doctor has given me.  I wouldn’t recommend this to you.  You should ALWAYS check with your doctor before changing your treatment plan, but unfortunately GPers live in a different reality.  We do an insane amount of research and the knowledge that we have gained about our bodies is INSANE!

So now I know that the GP Elves weren’t slipping me sedatives but rather were in cohoots with my doctor for one “super dose” that I don’t think is super at all.

~Millie

Gluten-Free April Update

Posted by Mildred Jane on April 11, 2013
Posted in: Diet, Energy, Gastroparesis, gluten free, health, Inspiration, Life. Tagged: , , , , , . 3 Comments

glutenfree

We have made it 1/3 of the way through Gluten-Free April so I felt that it was time to give everyone an update on how it is going.  So far I have only had gluten 2 days this month!  Both of which were minimal amounts:  1 English Muffin.  For some reason, I gave in and had an English Muffin on 2 days.  No binge gluten eating here!

I’ve found some really amazing recipes and gluten-free blogs which have been helpful in making Gluten-Free April successful.  In particular, I found a great turkey meatloaf recipe and peppers and chicken recipe.  I’ve also enjoyed chicken with gluten-free soy sauce and rice.  During the day I still stick with my smoothies, but it is nice to have a delicious gluten-free dinner.

However, my body seems to be going into a hibernation period without gluten.  I’m hoping that it is just a matter of my body adjusting and working all of the residual gluten out.  Even though I can’t seem to ever have enough sleep, I think that once my body adjusts that i will feel a lot better.  I have already noticed a reduction in the stomach cramping and bloating.

My additional goals for April have also been going well.  I’ve only missed 1 night of my nightly prep work.  It is so much more relaxing to go to bed knowing that my clothes are ironed and smoothies are made for the next day.  I’ve also stuck to my 10 pm bedtime except for Wednesdays because I’m a sucker for the Wednesday night TV line-up.

As far as coffee is concerned, I am under 10 cups per week but need to work on reducing that further.  Right now it appears that May is going to be “Caffeine-Free May”.  (Consider yourselves warned!)  All in all, I am really excited about continuing to reduce the unnecessary items going into my body.  Prior to April, I had already eliminated almost all chemicals from my food and I stay far, far away from GMOs.  I’m convinced to getting back to organic home-grown food is the best thing for the body.

It also feels great to exercise and sweat out additional toxins from my body.  I’m hoping to start attending an aqua aerobics class on Saturday mornings with a friend.  (Be prepared, because I’m sure that will turn into some interesting blog topics.)  My mother recently has gone through several hip surgeries.  (Yes, several.  Due to complications but she is doing well now.)  She was doing aqua aerobics as rehab and has inspired my friend and I to give it a try.  (Hi Mom!  I know you’re reading this!)

On a general whole for my April goals I would rate myself as a B+.  I’m almost to an A level but still have a ways to go, but I’m pleased with the progress thus far in April.

Now if only the GP elves would stop sedating me into day long slumbers!

~Millie

Take That Gastroparesis!

Posted by Mildred Jane on April 10, 2013
Posted in: Energy, Friends, Gastroparesis, health, Inspiration, Life, Spinning. Tagged: , , , , , , . Leave a comment

 triumphant-woman

Take that Gastroparesis!

Guess who made it to spin class two nights in a row?!

This girl!

That’s who!

I must confess that tonight I wasn’t completely motivated to go.  On the way home I hit a rather large traffic jam and was beginning to feel a bit nauseous.  Fortunately I had some time for a nap before spin class was scheduled to start.  I also knew that I was meeting a very good friend there and really wanted to say hi.  (Plus, she was making it to class at 8 months pregnant so it is a constant motivation that I can do this!)

I barely made it to class in time and within the first 5 minutes I was so glad that I did.  I was spinning out all of my frustration with Gastroparesis and how it has been dictating my life.  Then I began to think about how I was conquering it and that I wasn’t going to let Gastroparesis have the majority of my days.  I was becoming stronger and stronger as the class went on.  I was becoming more and more determined to show Gastroparesis whose boss and who was going to start reclaiming as much of her life as she can.  I was pedaling as fast as I could away from those pesky GP Elves!  (Seriously, I closed my eyes and pictured that at one point.  When I opened them, my RPMs were the highest they were all class!)

Now I am exhausted, but so glad that I accomplished something two days in a row.  There is a storm brewing outside that rivals that of the Wizard of Oz and I’m clicking my heels saying “There’s no place like pre-GP life, there’s no place like pre-GP life”.  Although I don’t want to go back to pre-gastroparesis life.  I want to continue living my life with a purpose and that purpose is to continue to educate and advocate for Gastroparesis.  I couldn’t imagine life without all of my GPer friends.  Life is so much more interesting with my fellow GPers and so much more fulfilling sharing a clear purpose with them!

~Millie

Battling Insomnia

Posted by Mildred Jane on April 9, 2013
Posted in: BrainFog, Energy, Gastroparesis, health, Inspiration, Life. Tagged: , , , , , , , . 4 Comments

awake2

Inevitably when you are sick (with Gastroparesis or any sickness), your time clock becomes completely inverted and screwed up.  Then you look like the photo above and lay awake about laying awake.  It becomes a viscous cycle and one that is hard to break.

With Gastroparesis it becomes particularly interesting.  You know that the best way to feel better is to sleep.  You could also say that the best way to feel better is to hibernate and you would be using a better description.  You sleep for days and in the process lose days.  You have no idea what day it is, what time and you begin to realize why retired people have no idea what day it is.  Awhile back I had a good laugh about this with one of my friends who is home on leave with a newborn.  We were chatting and neither one of us could figure out what day of the week it was without looking at one of our cell phones.  I have become so bad at knowing the day of the week that my boyfriend makes a morning announcement, “Today is Tuesday.  It isn’t a holiday and is a work day.  You have acupuncture tomorrow not today.”

I’m not sure how much of this is due to Gastroparesis Brain Fog or how much of it is due to insomnia, but either way I become extremely stressed when I can’t get to sleep.  Although, I’m not sure it should be called insomnia if it just so happens that you come out of hibernation at night time.  Either way, it is hard to lay awake at night and not contemplate Gastroparesis and your day ahead.  If you can’t get back to sleep, will you have enough energy to make it through the next day?  If you can’t get to sleep, will you become ill again?  If you can’t get to sleep, is it Gastroparesis or something else?  The list goes on and on.  Yet another loop.

However, this morning I am awake.  Starting to feel refreshed and getting ready to tackle my day.  I’m hoping to not overdo it today and knock out the last bit of this “mini-flair” (if there is such a thing).

~Millie

Where Did the Energy Go?

Posted by Mildred Jane on April 8, 2013
Posted in: Acupuncture, blogging, chores, depression, Energy, Gastroparesis, health, Inspiration, Life. Tagged: , , , , , , , , . 4 Comments

winduptoy

Today I have one simple question, “Where did the energy go?”  I would really like to know.  Although I did need quite a few naps throughout my chores this weekend.  However, I feel like someone pulled the plug or hid the batteries.  I can barely open my eyes.

I’ve written about this topic a handful of times, but it is one that continues to haunt me.  I’ll be on fire getting things done for a couple of hours and then have to take a recovery nap for 3-4 hours.  It absolutely amazes/dumbfounds/confuses me.  I feel that my body is still in recovery mood from becoming ill on Thursday night.  I’ve also been battling stomach cramping this morning which has not been fun.  I wonder if our bodies put us in hibernation mode so that we don’t feel the pain.

This weekend I took my prescription strength Vitamin D pill.  I’m only supposed to take 1 per week so I can only imagine how much Vitamin D is jammed into that little pill.  However, I think that it is having the opposite effect of what it is supposed to.  Vitamin D is supposed to help with your energy and brain function, but both of mine have tanked.

I feel like a slug.  This feeling is the part of Gastroparesis that I have the hardest time with.  I can accept the pain, nausea, vomiting, etc.  However, I can’t stand the feeling of knowing that things need to be done and I am rendered useless on my couch.  My brain doesn’t want to cooperate enough to even watch some TV shows.  As a result, I have been laying there falling in and out of sleep listening to a bird in the back yard sing and my dog snore.  Both very pleasant sounds, but not as pleasant as actually getting work done, making my smoothie, reading a book, putting a glass in a dishwasher, or really doing anything at all.

I couldn’t stand laying there anymore so I did what I always do to try to break the spell.  I set myself a goal to accomplish just 1 thing and then hope that the 1 thing will lead to more.  If not, it will at least wear me out enough to go back to sleep and not think about being unproductive.  So I decided to hobble over to my computer and type today’s blog.

Hopefully, it is turning out coherent because I think I see the GP Elves fluffing my pillow for me.  Maybe they can drive me to my acupuncture appointment in hopes of it knocking this bad energy and cramping out of me!

~Millie

Strong Enough to Live This Life

Posted by Mildred Jane on April 7, 2013
Posted in: depression, Diet, Energy, Gastroparesis, health, Inspiration, Life, priorities. Tagged: , , , , , , . 2 Comments

 

You-were-given-this-life-because-you-are-strong-enough-to-live-it

Okay, I’ll be the first to admit that there at times I want to scream when I see the quote above.  (You were given this life because you are strong enough to live it.)  Some days I just don’t want to hear it.  It’s the last thing I need.  I’m sure that almost anyone with Gastroparesis has felt the same way.  You wonder just how strong you are expected to be and just how much more life is going to throw at you.  You want to rip this paper from the pushpin, ball it up, and throw it in the garbage (maybe even set the paper on fire).

However, I will say that my fellow Gastroparesis fighters are some of the strongest people I have ever met in my life.  It seems that once we get over the initial mental hurdle of being dealt this incurable condition, that we develop a mental toughness like no other.  Sure we have our days of Brain Fog.  We have our days when depression takes over.  We have our days of self doubt.  But what I am noticing is that once you start to gain control of your brain and are able to push the negative thoughts out.  It is downright amazing how tough GPers really are.  This toughness is why the little post-it is correct.  We are strong enough to live this life.

We are resourceful enough to start Facebook groups, blogs, and forums in order to educate ourselves and to educate others.  We know the limited amount of research occurring for Gastroparesis so we use ourselves as human guinea pigs in an attempt to feel better even for an hour.  We will try anything.  I think  I would even try eating a mouse if someone told me it would make me feel better.  Those of you who are healthy and reading this are probably completely disgusted by that thought.  Those of you with Gastroparesis understand that I am only half joking and are contemplating in your head if you have heard anything about this before.

We have the resolve to keep fighting.  We have the resolve to fight for legislation that would expand research for Gastroparesis.  Legislation that will hopefully keep us from serving our guests mouse BBQ.  We are sick and tired of being sick and tired.  We are tired of laying in our beds.  We are tired of laying on our bathroom floors.  We want a change and we want it now!

This is why the statement is correct “You were given this life because you were strong enough to live it”.  We are strong enough to make the voice of Gastroparesis heard.  We are strong enough to not take this lying down with the GP Elves serving us mouse!

~Millie

PS…Please do not try to eat mouse as a result of this entry.  Please consult a trained medical professional before making ANY dietary changes.

PS…Please help pass HR842 to expand research funding for Gastroparesis.  Call your congressman and vote on-line:  https://www.popvox.com/bills/us/113/hr842