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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

Getting Back to Normal by Doing Some Chores

Posted by Mildred Jane on April 6, 2013
Posted in: Acupuncture, Caregiver, chores, Gastroparesis, gluten free, health, Inspiration, Life. Tagged: , , , , , , , . 10 Comments

A funny thing happens with Gastroparesis.  (Okay, you are right.  MANY funny things happen with Gastroparesis but today we will focus on just on.)  You actually get excited when you feel like doing chores!  Yes, you heard me correctly.  You are so happy to be scrubbing some dishes, vacuuming the floor, doing some laundry, or grooming your dog.  You are so happy that you think at any moment the cartoon birds will show up to hang your laundry on the clothes line.  The cartoon squirrels and rabbits will surely be coming to visit and scrub your floors.  So in my mind, I looked like the photo below even though I’m not a huge Disney fan.  In fact, instead of Disney I was singing along to some great 80s New Wave music!

snow white

(Photo Courtesy of Disney)

You have such limited energy with Gastroparesis that you try to get by completing as few chores as possible.  For me this is easy since I live with a “chore-a-holic”.  He loves chores and stays on top of them.  (Well, I don’t know if he loves chores or loves not having them turn into projects.  We took an informal vote of our friends and received inconclusive results.)  He also takes AMAZING care of me so that I am not spending my limited energy on chores.  This way I can still work, see friends once in awhile, and try to get some exercise in.  (Not being active really does a number on me mentally.  More on this in future blogs.)  I am so thankful for him because I really have no idea how I would get by without him (especially when I am going through a Gastroparesis flair!).

However, sometimes it’s nice to pick up the pre-GP routine of waking up on Saturday and cleaning up the house.  It’s nice to sleep in until my body decides it’s ready to roll out of bed, make some coffee, open the windows, put on some tunes, and get to work.  It feels like you have contributed to maintaining the home.  It feels like you are “normal”.  It feels like you aren’t a total bum “chore sponging” off your “chore-a-holic” fantastic boyfriend.  In short, it feels AMAZING!

Maybe the spring air is giving me an extra energy boost.  Maybe succeeding with “Gluten-Free April” is giving me an energy boost.  Maybe the acupuncture is giving me a boost.  Maybe listening to my dog have a blast with her squeaker toy is giving me a boost.  Maybe savoring my last month(s) of coffee is giving me a boost.  Or maybe it’s because my “chore-a-holic” boyfriend got up early to do errands at the store and there where actually chores left for me when I woke up!  No matter what the cause of the boost, I’ll take it and mark today as a win against Gastroparesis!

~Millie

(No wildlife was harmed or treated to unfair working conditions during my morning.  Although my dog did catch a squirrel last night, so she had to do double duty today!  POOR SQUIRREL!)

Picking Yourself Up After You Fall

Posted by Mildred Jane on April 5, 2013
Posted in: depression, Diet, Energy, Friends, Gastroparesis, gluten free, health, Inspiration, Life. Tagged: , , , , , , . 5 Comments

falling-off-bike

Well….I knew this would happen.  I just didn’t think it would be so soon into “Gluten-Free” April.  It seems that yesterday I hit a bit of a speed bump (or should I say traffic jam) and fell off my bike!  Okay, the photo isn’t literally me.  Everyone knows it would be coffee and not soda in my hand!  However,  feel that this photo portrays what a lot of people with Gastroparesis feel.  You go about your daily lives and then BAM…down for the count.

Yesterday I was feeling pretty good.  I had energy and was feeling optimistic.  I was even planning on going to a spin class with a friend.  (Hey, if she can go to class 8 months pregnant then I can go with GP!)  Then it hit.  The sea of brake lights in front of me when trying to get home.  Then another sea of breaklights.  Then another sea.  Then that nauseous feeling.  Then that weird feeling in your cheeks when you know that it is only a matter of time before you vomit.  Then the starting to plot where you can pull over to do so and if your body can hang on until you get there.

Needless to say that after my 1 1/2 hr + of driving and vomiting, I was not going to make it to spin class.  I did not get to check exercise off on my list.  I also did not have enough energy to prepare everything in the evening for work today.  (Although I could tell my body wasn’t going to let me go to work anyway.)  So I didn’t get to check evening prep off my list of things to do.  Since I was so ill, I wasn’t feeling like eating so I managed to stay gluten-free and check it off of my list as well as going to bed before 10 pm.

Even though I faced this setback, it was minor compared to the setbacks in the past.  I am starting to feel better today and think that I will be back on my bike by tomorrow morning.  I also had a nice chat with my GP BFF.  Our schedules haven’t been matching up well since we live on opposite coasts, but it was great to finally catch up with each other.  It reminded me that I need to add another item to my goal chart:  remember to check on my close GP friends.  We all need support and we all like knowing that we aren’t forgotten in the world.

So today, I will start picking myself back up from my fall.  I will start to chart my new course in life in an attempt to become as healthy as I can so that I can go tell Gastroparesis to take a hike!  (And not the fun kind of hike, the annoying all uphill in 100% of sweltering heat type of hike!)

~Millie