Thursday, June 13, 2013

Thank You

Thank You

Today I noticed that my blog has over 1,000 views in 12 different countries. I would never have dreamed that it would get much attention. My goal was to have informative gastroparesis topics to share in groups, where I feel I could help.

Later I will post GP Friendly Recipes and Links to help you in your gastroparesis fight. I see some of you have clicked on those tabs. Hopefully in the next couple of weeks I will have more time to work on this.

Thank you again for your continued support!

Wednesday, June 12, 2013

Botox Step By Step, Blog By Emily

Botox Step By Step, Blog By Emily

My friend Emily had a botox injection today to help her gastroparesis.  She was good enough to tell us about it step by step in her blog.   If you ever wanted to know more, check it out!

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! 

Self Struggle With Disability Application

I was denied unemployment, because their conclusion was that I could no longer work based on my profession's average core work schedule.  That was a fact, I could not.  I battled them in a court hearing to address the fact that I felt I could work in some other 'profession' that allowed me to utilize my skills I picked up from the current profession, to enable me to work on a part-time bases and around my medical condition.  I further sated it was my impression that even if I was only seeking a part-time job that I could not be denied.  The judge basically told me that my interpretation is only that, and that if what I said was what I was going to counter with Unemployment, I would need an attorney that practiced that sort of 'law'.   It only went down hill from there!

I had hoped to find a job that would accommodate my medical needs (bathroom close by, low stress environment, ability to consume nutrition at my desk and to be allowed to get leave at any given moment if I needed to do so: run to the bathroom, vomit in the trash can, to lay down or get a ride home if feeling weak/faint).   Working at my prior job my full time basis soon became 3 - 4 days a week at 5 hours or less.   So, I knew I needed a part time job around 3 days a week and no more than 5 hours per day.  Then (and still am) sick with a flare for 4 - 5 days every month during the same time.  No matter what I do to prevent it from hitting, it still happens.  Now we are talking working 3 weeks in a month. 

By now you could have calculated I would need an employer that would like to have me work for them at the most 9 days in a month and that is not guaranteed.  Who would hire for that?!  This lead me down the path of looking for an 'at home' job.  Ha!  What a joke, most are scams.  Okay, all that I looked at were scams.  I quickly gave up, yet the thought is still in my head.

ImageI soon realized that I was not getting better.  The sad fact is, I didn't know if I would ever get better.  I have a great GI Dr and we have tried about all that we can, without success.  So what else could I do?  The thought of unemployment gave me the creepy-crawlies.  And that is only because of how I was raised and what my mother thinks to this day.   But, I didn't care what she thought and how she would react.   Social Security Disability is there for a reason and I was sad to admit that I needed their help.

I had to talk it over with my husband to decide if this was something that I should do or not.  We decided to give it a try.  I found a wonderful attorney to help me.  He will help when I get my first 'denied' letter, that saves me some costs.   Plus, he has experience with gastroparesis and that made me feel good.

I submitted it on-line to make it quick.  If there is such a thing with them.  But, I got a call within just a few days to tell me they received it, it was one of the best they have seen in a long time with it being properly filled out and I got a case worker in my town whom I was speaking with.  Two rounds of packets of papers and now were are up to today when I got a call they are sending me to their own doctor.  Paperwork to follow via mail.  Oh goodie!  Another person to education on gastroparesis and make sure that he/she understand my GP struggles.  Can't wait for this and praying it is on a 'good' day for me to be a spit-fire!!

This may be offensive to some.  Growing up my parents always complained about how people are taking advantage of disability, collecting money to sit around and do nothing while they worked their a** off to fund the tax dollars these people are living off of.  I think what I wrote was a lot more gentle than if you really spoke to my parents about the subject.

For some reason I decided to bring it up during a family dinner.  Probably it was on a day I was tired of them asking so many questions of where I could work now, how we were going to make ends meet, etc.    Either way, I told them I applied.  My mother literally got up from the table with her plate and went into the kitchen.   My dad just looked at me, in a very disappointed way.  My heart sank and I wished I could take it all back.  I don't have siblings and want their approval.  It took longer than a month for my mom to talk to me.  At some moment down the road dad asked me about it in private and I explained my GP to him, how bad it it, told him about trying to get a job, and so on.  He understood and gave me his blessing.  To this day we don't talk about it.

I do know that there are some that do take advantage of it.  I saw it in just the few cases I had to handle where I worked in a life insurance company.  Some policies have a rider page that basically states if the insured becomes disabled that the company pays the insurance premiums for the length of time the person can prove disability.   I can only image what happens with some SSD cases. 

I too am sorry that I have to request disability and have to fight to prove how sick I am.  I rather work than sit home with my chronic illness and try to nourish my body so that I can have a 'good' day.  But, this is MY life and I have the power to decide what I am going to do. 

 

 

 

 

Tuesday, June 11, 2013

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. 

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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. 

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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!!

The Tender Tummy Cookbook - By G-PACT.org (their 2nd cookbook)

I just received in the mail The Tender Tummy Cookbook. It is the 2nd cookbook produced by G-PACT.org with the recipe contributions from gastroparesis fighters that want to share what recipes works well for them (and hopefully for you too). There are 251 recipes in total. Some are gluten free and dairy free as well.  

I am just so proud as I made it to the 'Acknowledgement Page", for helping out on the project!!

The cost is $16 in the USA and $23 outside, postage paid.

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Following is how you can order yours

(Copied from G-PACT)
Until the new website it ready (soon, we hope!), we cannot post an automatic link to purchase the cookbook. You may, however, order it online through Paypal or via snail mail.

To pay through Paypal, sign in to your Paypal account and click on Send Money. Type accounting@g-pact.org in the To field, and the amount ($16.00 or $23.00) in the Amount field. Specify that you are paying for goods or services and click Continue. Select your Payment Method, select your Shipping Address, then scroll down to the Message box. Type in The Tender Tummy Cookbook and click Send Money. You’re done!

If you choose not to pay through Paypal, you may send a check or money order to: The Tender Tummy Cookbook, G-PACT, 185-132 Newberry Commons, Etters, PA 17319. Please allow 3-4 weeks for delivery.

Any questions, please email cookbook@g-pact.org.

Sleep Deprivation's Effects on the Brain and Your Body

Sleep Deprivation's Effects on the Brain and Your Body

 

Here is yet another wonderful article by Emily Scherer.

"I have missed several nights of sleeps due to vomiting, nausea, and/or pain. I started to wonder, how will this affect my body long term? So, I started to do some research, curious as to why the doctors never address my sleeping issues. The articles I found were very enlightening."

 

It is fairly long, so grab a something to drink and snuggle in.  Well worth the read if you too do not get enough sleep on a daily basis, so you know the long term effects on your body and can address the issue now with your doctor(s).