Posts Tagged ‘Chronic Illness’

How To Find Melissa GP Fight

How To Find Melissa GP Fight

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Happy 4th of July (2013)

Happy 4th of July (2013)

Some of us will stay inside and hide from the people, parties and food. Others will venture our side of their comfort zone to try some food, knowing they may get sick. Why would they do that? Simply because they want to feel ‘normal’ and fit in.

To make the event a little better for you, it is best (I know – not as fun) to stay with foods that you know you can tolerate.  As an extra step, I always take a small cooler of ‘foods’ that I can tolerate, drinks and emergency medications.   This way I know I will be able to have something at the event.   You can either slip out and eat it at your car, or take it with you.  There is no shame in eating what your body will tolerate in front of others.  This is how we survive (and with less side effects).    Lastly, if they ask you to bring a dish, that is your chance to bring a dish that you can eat!

What ever you decide to do today, I hope you have a good day and enjoy it to the best of your ability!

Gastroparesis ‘Pain, Nausea & Fatigue’ Frogs

Gastroparesis 'Pain, Nausea & Fatigue' Frogs

“Hanging On For The Fight Of Our Life”. This is dedicated to all those that suffer from a chronic illness.

Photo is property of Melissa (GP Fight) McElfresh as of it’s creation date of July 1, 2013.

The GP Ripple Effect (Gastropareis needs a CAUSE)

Image

The GP Ripple Effect

I know I always say that I want to find a cure for GP (gastroparesis).  That is true.  But can be a misleading statement.  The fact is, Gastroparesis needs a cause

What do I mean?   Well, GP is a functional disorder.  Something must cause the motility disorder (GP).   One day you just don’t wake up and have a puppy in the room.  Something must have caused the event.

Unfortunately, the ‘experts’ do not know all of the causes for GP.  This would be why I have been labeled ‘Idiopathic’.  Which simply means ‘of unknown cause’.  So helpful, right?!

List of the known causes of gastroparesis:

  • Surgery where the Vagus Nerve is damaged
  • Diabetes – Over time, high blood glucose levels can damage the vagus nerve.
  • Metabolic disorders (hypothyroidism)
  • Chronic Illness – such as: HIV, Parkinson’s and Pancreatitis.
  • Medications/Treatments – such as:  narcotic pain medicines, cancer treatments, lithium, and tricyclic antidepressants.
  • Post-Infectious of Post-Viral Gastroparesis – the following viruses have been documented to cause GP:
    • Norwalk virus (stomach flu)
    • Epstein-Barr virus (mononucleosis)
    • Herpes simplex virus
    • Cytomegalovirus
    • Parasitic infections—Chagas’ disease and schistosomiasis infection, for instance.
    • Varicella virus (Chickenpox)
    • Rotavirus (causes inflammation of the stomach and intestines)

So now you will understand that when I say, “I want a cure for gastroparesis”, that this statement is not fully accurate.  To be able to ‘cure’ gastroparesis, we need to know how each one of us acquired gastroparesis, then find a cure for every possible cause (known and unknown).  This is going to take a lot of time and research money.  Right now we are struggling to get our Bill HR 842 passed; which would aid in the research needed for gastroparesis.   You can help by clicking on ‘Support’ for this bill, it’s that easy.   Go a step further and write to your state representatives.  Click HERE for more information.

Once we find the cause to our individual GP, then (and only then) can we adequately treat our self.

This is also a big reason why many of us have different GP symptoms, trigger foods, and tolerances; that you may have seen in the GP Groups that are out there.  We must always keep in mind that we are all different and know that when we share what works for us, it may not work for the other person.

Lastly, not knowing what caused the idiopathic gastroparesis you may get a wide range of time frames that your doctors will throw at you as to when to expect you will be better.  Keep in mind that honestly, they do not know.   They can only tell you what they have witnessed with other patients and what they learn in their medical books.  For example, if gastroparesis is caused by a virus then typically your symptoms can get better anywhere from 6 months to 12 months from the quick onset of the GP symptoms.   The virus can then lay dormant for a period of time and come back again.  We simply do not know for sure the key questions of ‘when’ and ‘why’.  I would like to touch base on those that had their vagus nerve severed (surgery or accident).  From what I understand, GP will not go away because the nerve to function your stomach is severed and can no longer perform it’s function.    On the up-side, the medical community has made ground breaking research on stem cell research and there is hope one day the nerve can be fixed.  Since research is so young in this area, it will take time and money.   Now we are back at needing awareness, education and to fight for funding so we can all have a better quality of life!

I call it:

The GP Ripple Effect

Picture being in front of a calm lake, soaking up the sun, warm sand under your feet.   You pick up a flat stone to skip across the lake.  Let’s name the first stone you are about to toss “GP Cause”.   You flick your wrist, skipping the stone across the calm, mirrored pond with such great skill.  It skips several times.  Your best ever!  In it wake it leaving several ripples.  The first ripple is “Gastroparesis”.  The next ripple will be your illness or symptom because of Gastroparesis (first ripple).    This can be GERD or Nausea.   Do this for each ripple going out from the first stone you cast (or in this case the GP Cause -stone).  For me it would be:  Gastroparesis, Nausea, Pain, Fatigue (I could go on).   This is what I call “The GP Ripple Effect”.  Which should really be The Primary Cause Ripple Effect – but I like mine better <wink>.

LINKS:

Idiopathic Meaning = http://www.medterms.com/script/main/art.asp?articlekey=3892

Diabetic Gastroparesis = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099072/

Chronic Illness and GP = http://www.rightdiagnosis.com/symptoms/gastroparesis/causes.htm

Medications = http://www.atlantagastroenterologyspecialists.com/gastroparesis.php

Virus 1 = http://www.digestivedistress.com/who-gets-gp

Virus 2 = http://www.medscape.com/viewarticle/561873_4

Other = http://www.gastroparesis.webs.com/

Hypothyroidism = http://www.drdonnica.com/faqs/00003508.htm  (response to a question in a forum)

hypothyroidism

Self Worth and Chronic Illness (my personal struggle)

Chronic Illness has a way of messing with your head.  I have had gastroparesis for 15 months (diagnosis time) and that has been quite the time.  If you are reading this, you too probably have a chronic illness or know somebody that does, so you fully understand that vague statement!

At first is was Dr after Dr, then after nobody knew further what to do, it was pill after pill.  I have a whole tote of pills that I had only take a couple of and had a reaction to.  I am the sort of person that keeps the pharmacy hand out and then writes notes on it based on how my body handled the drug.  Those notes go into a journal at some point, for future reference at a future Dr Apt when they want me to try something (and it was that same something I had before).  If I had a better memory, I would not need all of this.

ImageThen, you finally get time to your self without the poking a prodding.   Without my job to keep my sanity, I feel very lost and alone. 

First I had our house on the market and focused on keeping it up for showings and baking cookies for when we had a showing.  Then it was onto packing.  The house sold, which then began all the hoops we needed to fulfill the lender.  Finally, it was the rush to finish packing and then to move.  That came and went.  Moving day was May 1st and now we are June 12th and I am mostly unpacked and our new place is the way I want it -for now.

Now, I have run out of things to do (besides blog and help with GP questions) and wait for my husband to get home.  I feel guilty that he has to slave away with 10 and 12 hours shifts so that we can pay 90% of our bills.  I feel that I have put pressure on him to make sure he does a  good job at work, because we need his employment.  And most of all I feel like I am not worth anything to society as I as when I was working.

Like I said, Chronic Illness dose a number on your head!  You thought that you other symptoms were bad… going down a road of self doubt is not much fun either.   I am proud to say that this feeling doesn’t hit often, but when it does it is scary!

I need to find something to occupy my time, but haven’t found it yet.  It appears that we may have to move in the near future, so I rather not get to invested in anything.  My gastroparesis research for my blogs (more in the future) keeps me going and helps me learn a little more.

Thanks for reading and I hope I didn’t get you too down with the blog.  I am doing fine and happy that I have my husband, family and GP family to support me.   All I can do is pray there is a cure (or better treatment options) to end this suffering that we are all going through, no matter your reason for reading this today! 

Amitriptylin and Me

Yesterday I as ill from symptoms related to gastroparesis that decided to become worse than my ‘normal’ days.   All of us that suffer from a chronic illness know our ‘normal’ day is not that of a ‘regular’ person.  We have to tolerate so much more on a typical day.

For some reason mine decided to continue to get worse last night until I head my head in the toilet.  I know I always flare around the 20th of each month, so now (6th) was very odd.  Nothing changed in my life or what I was eating, even the environment (inside and out) seemed the same.  One day I would love to know what my other triggers are!  That’s where my journal comes in handy, if I write enough in it (like a detective)!  Link is here if you want to find out more:  https://melissagpfight.wordpress.com/2013/05/23/chronic-illness-journal-blog-1-of-2/

ImageMy husband had the next day off and I wanted to be well, so I could enjoy the little time we do get to have together.   Since the nausea was not going away and I didn’t want to be up all night I did the only thing I could…. take 5mg of Amitriptylin.   This is the ONLY prescription drug that worked for me for and I could handle the side effects, if I only took it once during a flare.  The problem for me is it makes me sleepy.  Let me rephrase that!  I took it at 9pm and didn’t wake up until 11am and still wanted to sleep.   Like I said my husband was home and I wanted to spend time with him.  Generally I would go back to bed and be awake when he got home at 6pm.  That is 21+ hours of constant sleep because of 5mg of Amitriptylin.   I can not order anything smaller.  I tried cutting mine further, but it wasn’t effective.

So I was up, sort of.  Groggy with a huge headache and very thirsty.  Yes, I get cotton mouth with the small dose and a margarine.   But I didn’t have my head in the toilet all night.   I had hoped that maybe this time my body would react better with the med.  Guess not.

I made it to the kitchen to get something to drink and watch a little tv.  That turned into a nap.  I made a smoothie so I could get some protein in me (egg powder protein… link here:  https://melissagpfight.wordpress.com/2013/05/29/the-importance-of-protein-powder-ideas-for-smoothies/) and decided to go to the store with my husband so I could get some soup and Gatorade.  I felt like I could make myself do it and I did -for the most part.  He drove as I was way too dizzy to do so.  Closed my eyes a few times and wished I had not gone.  But the store was just a few blocks away and we only needed a few things.  However, the dizzy part is a killer when you are walking down isles with different shapes and colors!  I leaned into him and stopped walking.  He knew what was happening and finished the shopping quickly.  

It is hard for me to just ‘rest’, (I know it is the best thing for me) when my time with my husband is precious to me and I want to ‘be normal’.   Which is highly overated!!  LOL

Back home I had some chicken noodle soup and more to drink.  The dizzy spell is under control, now to work on the headache and off to another nap! 

For me, it is a toss up if I really want to take the Amitriptylin or not.  My GI Dr thinks it is good to have on hand, even though it makes me sleep for so long.  I would never want to forget that I took one, or I could end up in a coma!  Scary drug for me.  I make sure that if I ever take anything my husband knows what it is and when I took it.  Never can be too safe.

Food Journal

When diagnoses with gastroparesis, all I as told was to eat 5 – 6 low-fat and low-fiber meals.  I had a one sheet hand out that told me very little.  But it did out line: no red meat, no raw fruits and vegetables.  Great, so what CAN I eat?  I researched a lot of it via good and bad sources (I will post links later on my blog’s main page).  After trying a ‘new food’ it was hard for me to know how I felt the next day or later when I tried it again.  As you may know, it is so overwhelming to have this diagnosis and figure out how foods affect you.  Since gastroparesis (GP) effects us all in different ways.  You may be able to eat something that I can not tolerate, as so forth.

So I decided to do a journal.  It is an easy format, but takes daily dedication to have the full picture of your heath and figure out what foods trigger what in you.

First step is to make a scale from 0 – 5.  This is your ‘pain’ scale.  0 is your ‘normal’ or you can rank it as having no pain.  It is up to you!  5 is then the worst ever.   I have a scale for the following as these were my main issues:

  • Headache
  • Nausea
  • Stomach Pain
  • Dizzy

Here is an easy journal format:

======================++++++++++++++++++++++++++++++++++++++++==========

May 23, 2013 – Thursday

9am     Woke Up

Headache 2, Nausea 3, Stomach Pain 1, Dizzy 0

2 Ginger Supplements, 1 Fish Oil, 1 Calcium Tab

9:30     Hot Tea & 2 slices of toast with strawberry jam

11am   Headache 1, Nausea 2, Stomach Pain 3, Dizzy 2

Noon   1 cup of chicken noodle soup

2pm     Smoothie: Greek yogurt, banana, blueberries, protein powder, juice

Headache 1, Nausea 0, Stomach Pain 2, Dizzy 3

======================++++++++++++++++++++++++++++++++++++++++==========

If you can be sure to include the amount of food/drink, medications along with amounts, what you are drinking, any supplements, and be sure to do a 0-5 scale when you feel something in your body change.  It could simply mean that a few hours after I always take  ‘___’, I feel ‘___’.   For me it was anytime I had dairy at night, the next morning my nausea was high.  You do have to be a detective, but it is well worth it for your overall health.

Here are two pictures of journals.  I have now decided that I like the calendar style the best.  I keep it at my bed side and took it with to work (so I could log my lunches).  The other picture is just a standard journal with lines.  Pick what works for you.  Even if it is a sheet of paper, your phone or calendar on the computer, taking the fist step to seeing a clearer picture of what foods work for you, is all that matters!

Journal 1Image

TIP Always try a food more then one time to determine if you can tolerate it.  Maybe the food item did not work well on just that day or in combination of something else you ate/drank.  This is also why a journal is key – to weeding out those new foods.   Or keep a journal just for that!

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