An Author Save Me – From Gastroparesis Self Destruct

I owe a LOT to Crystal Saltrelli, CHC and her book Living (Well) With Gastroparesis (http://livingwithgastroparesis.com/get-help/books/).   I was so lost and alone after being diagnosed with gastroparesis.  My GI Dr at that time did not help me and only told me to 5 – 6 small meals a day that are low in fat and fiber.  She promised if I did this, I would be all better in a year.  Well, I have done this and am going over a year and feel as much pain as I did then. 

Anyway, I didn’t know what I was to ‘eat’.  So I did what any person does in this day and age…. hit the Internet.  I slowly began to grasp what the GP Friendly foods were.  Then had to eliminate a lot of those due to personal allergies.  I looked at my options through my tears not knowing how I would survive on what was in front of me. 

So, I wondered if any body else was like me.  I was already on Facebook at the time to play games and interact with my friends, so I searched for Gastroparesis Groups.  I found some and was frightened at what I was reading: deaths, feeding tubes, people unable to manage their pain, etc.   What was going to happen to me?!   I cried, in private to not scare my husband. 

Then I found Crystal Saltrelli and her website, then her Youtube videos.  There was a spark of hope deep inside of me that I may not die after all.  This may not be a slow death sentence.  I found she had a book, then looked to see if it was at a store in my town.  Of course not!  So I ordered it and paid for rush shipping!   I could not wait to understand what I needed to do to survive GP!  As the days passed, I watched all I could of her videos and followed per page.  Each day, I felt like there was hope.

The book came and I dove right into it with my highlighter and sticky notes!  I was determined to figure out what I needed to get me healthy again, what treatment options there were and what on earth I needed to do to ‘fix’ me!

Sadly, there is no cure.  But I learned what options were out there, what to eat and most of all to try my best to remain up-beat so I could pull myself out of the funk and get on with my life. 

From there it just snow balled.  My desire to advocate for myself, get a GI Dr that I could trust, then to volunteer for a non-profit (G-PACT) and lastly, to help others like me by doing all I can to spread the word that Gastroparesis exists and needs a cure!  

I owe all of this to Crystal Saltrelli.  If it wasn’t for her, I feel my husband may have had me committed to a white padded room with a vomit bag!   I was in such a deep dark place, it was scary.   

I know that the author may not read this blog, but my heart felt THANK YOU is being said and also HAPPY BIRTHDAY.  She was so kind to offer a discount to people on her b-day, so I took advantage and bought her e-book on juicing.  I need to learn how and what combos are best.  This is my next big step to better health.  So far, so good.  I have maintained weight, my hair is no longer falling out and I am not vomiting as much.  My life is on track of where I want it to be.  Thanks Crystal!!

My GP Story — Part 2 (1st GI Dr)

My GP Story Part 1 (https://melissagpfight.wordpress.com/2013/06/02/my-gp-story-part-1/) left off with me being diagnosed with gastroparesis after the gastric emptying scan (https://melissagpfight.wordpress.com/2013/06/03/my-digestive-study-gastric-emptying-study/). 

Well the GI Dr that read the results and did all she could to get me a diagnosis was simply not for me.  She didn’t care about her patients in anyway.  I was read my ‘results’ and handed a 1 page print out of what gastroparesis is, a copy from the Mayo Clinic.  She said this is all that you need to know.  Follow this and you will be fine, see me in 6 months if you need any more help.

I went home and looked at the hand out.  What the heck just happened to me?!  I read it and it didn’t tell me what exactly to eat or stay away from.  Simply read: “consume 5 – 7 small meals that are low in fat and low in fiber”.  Really?! 

So I began the search on the internet to see what am I suppose to eat and what should I avoid.  I read a few things, but nothing much that was helpful.  I went into some groups on Facebook and got scared (shitless) with the stories of feeding tubes and death.  

So, I decided to look for books on gastroparesis.  I found 2.  And neither of which were at my local store.  I dug deeper into the newest one and fell in love with what the author was saying and knowing that she too has gastropareis.  I went to her website and after looking around ordered the book:  “Living Well With Gastroparesis”, by Crystal Saltrelli, CHC.   I was in so much need for information I paid for the express shipping.  In the meantime I was watching all of her YouTube videos.

I can honestly say that I learned 1,000 times more from her than from my GI Dr.  How said is that?  Yet, how great is that, that I knew something about GP and how to ‘fix’ me!!  I will post links below.

Well 6 months came and went.  I changed my diet (foods and amounts) and was still very sick.  Vomiting, Nausea, Dizzy Spells, Fainting, Fatigue, Headaches, and the list goes on.  So, I went back to the GI Dr.  I told her what was going on and what changes I made.  I even told her about the book I bought because her hand out was not very good.  She said, “I would have bought one too, if I had gastroparesis”.   What the hell?!   SHE is suppose to help ME!!  Not a book.  Ugg!!

The GI pushed me hard to take Reglan and I said no.  She didn’t like being told no and kept at it.  I reminded her that I took it during the digestive test and it didn’t go well.  She tried to blame the gal that gave me the medication.  I told her, no I was given it by IV in a very low does and very slowly.  She still didn’t get it.  Then told me to order off the internet the drug from Canada instead.  I said I would look into it.

In the meantime she gave me another refill for GERD medication and told me I better take it, as it is part of the Management Plan I need to follow to get better.   I took the order form, but never took the drug.  I did in the past even at double doses and it never helped.

My third encounter with her was my last.  I had gone in after  about 3 months and said I was still having problems.  And now it is effecting my job.  We went over the Reglan (again) and I am still not going to take it, then I wasn’t going to order the Canada drug, so she was getting frustrated with me.  She was not about to give me drugs to ease the pain -which was fine.  I wanted something for nausea.  She told me to get an over the counter Dramamine and I should be fine.  So, I stepped out of my box and asked her if she knew of a mental health person I could talk to and who would understand gastroparesis.  She looked at me with a blank face and said, no.  I began to cry and she didn’t know what to do.  Then told me that, ‘oh, this must be hard on you.’  I nodded through tears.  Then she said, ‘I guess it is life changing’.  Do you think?!   Before I left she told me, ‘don’t worry, you should be better in a year.  Idiopathic Gastroparesis generally goes away in about 12 months.  You will be fine’.

That was my last GI Dr visit to her!   And I have the nerve to tell her it has been over 12 months and I am still sick, lost my job and am still having problems.  But, I know she will not care, nor will she listen.

I do have a new GI Dr that I love!

To Be Continued…..

LINKS For Crystal Saltrelli, CHC:

• http://www.linkedin.com/in/csaltrelli
• http://www.youtube.com/user/csaltrelli
• https://www.facebook.com/CrystalSaltrelliCHC
• http://livingwithgastroparesis.com/
• http://www.amazon.com/Crystal-Zaborowski-Saltrelli/e/B0050NKWDW