Medicare to stop covering Idiopathic Gastroparesis???

This blog posting is a call to arms and I am asking everyone that reads it to take action and help us!

Here is the story... it was decided on April 26th of 2010 that Medicare will, as of January of 2011, no longer cover Gastroparesis as a stand alone primary diagnosis, meaning that Idiopathic Gastroparesis will not be covered for reimbursement.

This comes from http://www.kslaw.com/Library/publication/HH042610_Rule.pdf on page 196 section 7 (a) which reads-

"Unacceptable Principal Diagnosis Edit: Addition of Code for Gastroparesis

It has been brought to our attention that code 536.3 (Gastroparesis) has a “code first underlying disease” note. This note indicates that code 536.3 should not be used as a principal diagnosis. Therefore, code 536.3 should have been included on the list of unacceptable principal diagnoses in the MCE. We agree that code 536.3 should have been included on the list of unacceptable principal diagnoses in the MCE. Therefore, for FY 2011, we intend to add code 536.3 to that list"

In layman's terms this means that Idiopathic Gastroparesis, or Gastroparesis that is not attributed to another disease and covered under that disease or condition's coding will not be covered as of January of 2011 under this ruling.

When searching through the medical coding index database I discovered that Gastroparesis has only one coding number (536.3) and no differential for an Idiopathic code. This means that the term is a blanket term and since the majority of Gastroparesis cases are of a known cause the fact that there is a Idiopathic Gastroparesis was overlooked or unknown to those that made this decision. I found examples of other conditions of Idiopathic nature that did have their own coding separate and listed as Idiopathic. (EX- Diagnosis code 356.8- specified Idiopathic peripheral neuropathy).

The very idea that Idiopathic Gastroparesis will not be covered by Medicare because of what may very well be ignorance of the numbers of patients who have no diagnosis beyond the Idiopathic nature is disturbing and needs to be brought to the attention of Medicare and the Department of Health and Human Services as well as our Representatives and Congressmen.

You can find the contact information for your representatives by clicking on www.senate.gov .

G-PACT, a non-profit organization that works hard for those with Gastric motility Disorders (their site is www.g-pact.org) has also gathered the following information for those who wish to help change this new ruling before the June 18, 2010 at 5pm deadline-

"In addition to senators and representatives, you may also contact CMS (Center for Medicare and Medicare Services) the following ways no LATER than June 18, 2010 at 5 PM EST:

ADDRESSES:

When commenting on issues presented in this proposed rule, please refer to file code CMS-1498-P.

Because of staff and resource limitations, we cannot accept comments by facsimile (FAX) transmission.

You may submit comments in one of four ways (please choose only one of the ways listed):

1. Electronically. You may submit electronic comments on this regulation athttp://www.regulations.gov/. Follow the instructions for "Comment or Submission" and enter the file code CMS-1498-P to submit comments on this proposed rule.

2. By regular mail. You may mail written comments (one original and two copies) to the following address ONLY:

Centers for Medicare & Medicaid Services,

Department of Health and Human Services,

Attention: CMS-1498-P,

P.O. Box 8011,

Baltimore, MD 21244-1850.

3. By express or overnight mail.

You may send written comments (one original and two copies) to the following address ONLY:

Centers for Medicare & Medicaid Services,

Department of Health and Human Services,

Attention: CMS-1498-P,

Mail Stop C4-26-05,

7500 Security Boulevard,

Baltimore, MD 21244-1850.

4. By hand or courier.

If you prefer, you may deliver (by hand or courier) your written comments (one original and two copies) before the close of the comment period to either of the following address:

Room 445-G,

Hubert H. Humphrey Building,

200 Independence Avenue, SW,

Washington, DC 20201.

(Because access to the interior of the HHH Building is not readily available to persons without Federal Government identification, commenter's are encouraged to leave their comments in the CMS drop slots located in the main lobby of the building. A stamp-in clock is available for persons wishing to retain a proof of filing by stamping in and retaining an extra copy of the comments being filed.)"**

**The above quoted information was provided on Facebook and does not imply that G-PACT has endorsed this blog and are not to be held liable for any of my opinions or information that I provided If there is a typo or misinformation in my cutting and pasting or any of the information I have given it is on my part alone.

There is a reason why I am sharing all of this with you...

We need every voice we can get... every person that is willing to take a moment and write a letter or an e-mail to take just a moment and voice their concerns on this matter.

The Private Insurance Companies take their cue from the Government and will see this as a 'green light' to cease coverage of Idiopathic Gastroparesis leaving those of us with this diagnosis in harms way but more importantly at the moment there are people who are disabled due to the severity of their condition and on Medicare who are looking at a very bleak future if this oversight is not corrected.

It should be a very easy fix, simply changing the wording of the coding from "Gastroparesis" to "specific Idiopathic Gastroparesis" and recognising that it is a primary diagnosis on it's own and that there are people that never find any root cause for their condition. Simply because no root condition is ever found does not mean that these people do not suffer and need the proper medical care and supervision.

I hate to put pressure on this, but there is a timeline involved and only a short amount of time to do something to help fix this.

Every single voice matters... please join yours in the outcry to change this before it is too late.

Thank you

Furry Therapists

When just getting out of bed can be a major challenge some days the thought of taking on the responsibility of a pet can seem overwhelming and an insurmountable challenge. A pet would mean having to feed, water, groom, clean up after and give attention to an animal that is totally dependant on us when we can barely do those things for ourselves some days. I must be nuts for even suggesting such a thing, right?

I thought the exact same thing in March of 2006 on my way home in a four hour car ride from my last ankle surgery when my husband said "I have a surprise for you" then told me that we were going to be stopping to pick up an 8 week old chihuahua puppy for me to train to be my service dog. I just had my ankle fused and endured my 19th surgery in 10 years on my ankle, I was nauseous and in pain and he wanted me to take care of and train a tiny puppy? We stopped and I managed to use crutches to hobble into the home of the breeder and sat on a sofa while the man of the house came in carrying two impossibly tiny puppies, a solid white female short haired female and a copper colored long haired male which he placed on my lap and my husband said "choose." The female was timid and shaking and the male simply looked into my eyes then crawled to my arm and curled against it and laid his head on my hand. I chose the male because he seemed to not be shy and I love the look of long haired Chihuahua's.

We left the breeder, my ankle screaming in pain and that tiny puppy already asleep in my lap, stopped by a pet store to pick up food, a tiny crate, a puppy litter pan (yes, they make doggie litter pans) and all the other things that a puppy needs along with a pink teddy bear that was five times larger than my new puppy and my husband picking on me for picking a pink teddy bear for a male puppy.

At home I settled on the bed, placed the crate on an end table level with the bed and set up the litter pan and placed the puppy in it over and over until he finally piddled in it at which time I made the biggest fuss in the world. He loves all that clapping and cheering and within an hour his little mind locked onto the idea that if he does his thing in the pan there was a major party. I fed my new little pet and almost panicked when after eating he took off like a flash and was pleased and shocked when his little legs raced him to the litter pan where he struggled over the high lip (all of 2 inches) into the pan to go potty!

My husband went back to work the next day, leaving me home alone, barely able to take care of myself let alone a puppy and instead of being able to sleep my time away I had to get up every hour to offer my new pup the chance to visit the litter pan and every 3 hours to feed him along with giving him play time and grooming. I was exhausted and in pain, my stomach constantly spasming and my blood pressure going nuts but I could not give in and simply sleep.

I soon named my new puppy "Casanova, Prince of Mischief" on his papers and "Loki" (for the Norse God of Mischief and Trickery) became his nickname. Every time I took care of him I would work on simple commands and soon he was sitting, laying down and all the other basic obedience commands without fail. Eventually at 10 weeks old he started his official "Puppy Obedience" classes and he soared through them like a champ since he already knew the commands by voice and hand signal. The trainer thought he was hilarious because when told to "down" he would lay down so fast she called it the 'Loki Splat' and when he was learning the 'come command' he would race to me and skid to a stop on his tush, sliding a little on the linoleum floor in his haste. He was extremely bonded to me even at that early age, something that I encouraged since a Service Dog should be bonded strongly with their handler. Our trainer called him the 'velcro pup' because he was always right there where I was looking up at me just in case I asked him to do anything.

After his puppy classes I continued his Service Dog training at home and he picked up things so fast that I would often (and still do) have trouble thinking up new things to teach him and challenge him with. Teaching a dog how to be a service animal is a very prolonged process... every task is actually a series of smaller tasks that they must master before putting them together as a single act. To teach a dog how to turn on a 'touch lamp' you first have to teach them to touch things with their nose, then you have to teach them to touch different objects by name by simply pointing at them. Then you have to teach them to only touch it once for each command. Loki was turning on and off the touch lamp in a single afternoon... and soon it was simply saying the command "light" that would trigger the command. The cell phone took longer because it would be making noise when he had to go get it and even though he learned to bring it by name quickly the first time it made noise when he was supposed to bring it he ran for the hills! "MOM!!! That thing is yelling at me!!!"

Loki is now four years old and I would never have thought that he would mean as much to me as he does. I honestly do not know what shape I would be in right now if I did not have him to take care of and it never occurred to me in those initial days when I would be in tears just wanting to go back to my routine of sleeping all the time that he would be the one taking care of me and giving me the strength to keep active.

Because of Loki I can honestly say that I fully endorse the idea of those with chronic illness to have a pet. You do not have to train it to be your service animal but teaching them tricks will not only give you goals to meet but will enrich your pet's live by keeping their minds active and in turn give the both of you hours of fun.

Choose your pet carefully and consider things such as cost (vet costs, training, housing, food) allergies (if you are allergic to dogs consider breeds that are 'hair' breeds and not 'fur' breeds such as poodles, llhasa apsos, maltese, yorkies, ect. They take more time in grooming but are considered hypoallergenic) and other factors. Maybe your perfect pet would be a cat (they can be trained as well), ferret (they can be trained, I have seen it), guinea pig, bird or even a rat! Choose a pet that interacts with you, something that likes interaction with humans and fits into your lifestyle. Fish are great, but they will not force you to get out of bed to train and work with them and neither will most reptiles.

Set goals and work towards those goals in small steps that are realistic and do not tax you too much but still challenge you to push just a tiny bit more each time.

Puppies are wonderful, but consider an older pet from the local shelter or pound if you are not going to be training it as a service animal because chances are that they are already house broken which will take away some of the challenge of having a pet. Not only will you have a wonderful pet but you will save a life and in return they will do the same for you in amazing ways that will shock and humble you such as giving you confidence that you can do more than you thought.

If you cannot get a pet, consider offering to volunteer at a pound or shelter once a week to go in and give the animals attention and affection. Animals in shelters are in very stressful situations where they are kept in kennels or cages most of the time and that can cause them to be anxious, shy or too energetic making people pass them by for their calmer kennel mates. Volunteering to go in once a week and spend a little one on one time with these animals will help to calm them and give them positive interactions that could make them more adoptable... possibly saving their lives.

I never knew when I saw that tiny puppy crawl up on the pink teddy bear, his minuscule legs not even reaching the bed as he sprawled on top of it and started sucking on it's nose that in four years time I would be looking at him, laying on that same teddy bear and sucking on that same nose (that bear has been re-stuffed twice and washed more times than I can count) what a change he would make in my life... my furry little therapist does more than just get things I drop and bring me things... he gave me back my self respect.

Steaming Smoothies!

Who says that a 'Smoothie' has to be a frozen beverage or even cold?

The concept of a "Smoothie" is a smooth blended beverage... why not have one that is warm or even hot?

Lets face it... for many with Gastric Motility Disorders the cold or frozen "Smoothie" is a blessing, but for others, especially those with 'Dumping Syndrome' those chilly beverages are a recipe for trouble.

The idea of a Steaming Smoothie might be a bit 'off setting'... "what... hot banana and strawberry... ewww" but what about the savory flavors that could be enjoyed in this way and not the sweet?

You can make broths (chicken, turkey, beef, ham... you name it) at home and by following some simple steps make them as fat free as possible* then use them as a base for Smoothies that have the flavor of dishes you have not been able to eat in years. Then you add your home made (or if you prefer stage 1 baby food) pureed veggies and can thicken with instant mashed potato flakes (check the label to make sure it is 100% dehydrated potato) then blend and microwave and enjoy! You can be sipping on things like split pea soup with ham, beef stew, Sunday chicken dinner.... I have even been working on one that tastes surprisingly like pizza by making pepperoni fat free broth with tomato juice and powdered Parmesan cheese, the spices are still a bit hard on my stomach but with work it might be pretty good one day.

Like cold smoothies you can add flavorless protein powders, water soluble fibers and other things to punch up their benefits.

You can also make hot desert style Smoothies by looking up hot desert recipes and modifying them to the Smoothie process. I can see things like hot apple pie smoothies, Molten Chocolate Cake smoothies being a possibility. It will take trial and error, but a hot Creme Brulle is not out of the question!

*The process for making a fat free broth at home is a bit time consuming but well worth the effort. While many manufacturers make "Fat Free" broths that you can buy they are often high in sodium or have other ingredients such as gluten and preservatives that you may want to or have to do without. Making a broth at home is the best way to be 100% sure of what goes into your broth.

To make your broth fat free you will need to follow a few simple steps-

1. Place the finished broth in the refrigerator overnight. In the morning most of the fat will have risen to the top and be visable. You can use a spoon to simply scoop the fat off the surface.
2. Reheat the broth then pour the broth into ice cube trays and freeze solid. Any residual fat can be wiped with a clean cloth off the surface of the frozen cubes.
3. Remove the cubes from the trays and store in zipper style freezer bags with as much of the air removes as possible. Stored this way they will last quite a while in the freezer and the cubes make it very easy to use only what you want when you want

Gastroparesis is not a pretty picture...

Many Awareness Campaigns have beautiful Spokespeople posing in advertisements and doing press conferences... flashing perfect smiles at the cameras and giving a 'pretty face' to the condition they are bringing forth. Lets face it... the general public likes to look at pretty people and will listen to what they have to say.

Gastroparesis is not pretty... how it affects the body is not pretty... how it makes you feel is not pretty.

Sure, it would be great to have a beautiful face out there getting attention for Gastroparesis and other Gastric Motility Disorders but the reality is that what this invisible condition does to our bodies is insidious and cruel. We have imperfect teeth from acid damage, bloated bellies, scars from procedures, dull hair and brittle nails from malnutrition, premature wrinkles from dry skin and unconscious frowning from pain... the list goes on and on.

Personally, I HATE having my picture taken and avoid it at all costs... heck, the picture I use when I have to use a picture is one from my 20's when my Gastroparesis was new and the affects were few and this blog post is as much for me as it is for any readers that come along. Call it my personal coming to terms with the fact that I will not look like that again and that I have to accept what I look like and show my face to the world as what Gastroparesis is for me... not what I was before it.

Why am I writing this blog post?

I think that it is important to bring to light the real faces of Gastroparesis... with all the flaws and imperfections as they are. Perhaps the reason that Gastroparesis and other Gastric Motility Disorders are an Invisible Illness is because we try so very hard to hide the affects and that can make it harder for others to feel that visceral connection since we often 'see' more than we hear.

It is time to put away the concept of vanity and instead take that terrifying step into the stark light of day and scream out to the world "I am the face of Gastroparesis (or your Gastric Motility Disorder) and I will not hide the truth!"

Some of us are extremely thin, some of us are overweight or even obese from the strange and cruel process of our conditions and we want to fade into the background. Society dictates that only the 'pretty and perfect' should be seen and we feel judged every time we leave the house.

There is a report from 2008 that stated that Gastroparesis itself affects 4% of the US population or one in every 25 people and many people are shocked when they hear those numbers but the sad truth is that the Awareness is low because we are afraid to let the world see us as we are.

If we want to really make an impact then we have to get people to see is for what we really are and not be afraid of being seen.

There are people out there who have the diagnosis who are not on the internet and have no clue that there are so many like them and they do not have to go through this alone. There are people out there who are suffering undiagnosed because no one has ever put the pieces of their puzzle together who are feeling helpless and wondering about their sanity that could be helped if they just knew to ask for the proper testing.

What Gastroparesis has done to me is not pretty, it is an ugly condition... but I am NOT ugly and neither are YOU! We are the real faces that need to be seen and the voices that need to be heard.

I am going to take my first big step soon... in just a couple of weeks my youngest is graduating from High School and I will allow my picture to be taken at that time, both with as much make-up and hair supplies as I can glob on to cover the affects of Gastroparesis and without and I will (gulp) share those pictures.

We need people to be willing to be Spokespeople for this condition all over the world, people that are willing to let the world see them and all of us... to make this invisible condition 'Visible'.

Getting MAD!!!

If you suffer from a lifelong incurable condition it is not uncommon at all to get mad-- mad at the Doctors for not having a cure, mad at your friends and family for not understanding what you are going through 100%, mad at life for being unfair...

There are people that will tell you that you should not get mad or be angry or hurt by what is going on and that just makes you madder because they just 'don't get it' or you end up feeling selfish because you are so mad when 'others have it worse'.

I am not going to tell not to be mad... you should be mad!

Getting diagnosed with an incurable illness is like suffering your own death (I am not kidding)... the person you were is gone and for the rest of your life you will be 'the person with _____'... normal has died and being mad is part of the grieving process. You are grieving the death of your 'normal'.

The normal stages of grieving are-

• Denial and Isolation- you do not want to accept that the normal disease progression will happen to you and tend to become introverted as you come to grips with your diagnosis. Sometimes your isolation is not self directed... you either do not feel up to going out as you used to or old 'friends' that cannot handle the situation start to fade away.
• Anger- you get mad that this has happened to you and search for a 'cause', something to blame.
• Bargaining- you are willing to try anything to try to find normal again, even things that you would have sworn pre-diagnosis were things that you would never do. You try to 'cheat' things as if you could trick your body into allowing you to be 'normal'. (example- I have two family members, my Father-in-law and his brother who both have diabetes, the brother is now blind because he would try to guess how much insulin he needed to eat an entire cake, inject it then eat the cake and my Father-in-law who does the exact same thing even after seeing his own brother go through it)
• Depression- 'why did this happen to me?', you 'give up' because nothing will ever make things better, so why should you even try?
• Acceptance- You have decided to work within your limitations and have decided to adapt your life to your new reality... your new 'normal'.

So being mad is 100% normal, and it is not uncommon to go through these stages over and over as you deal with new situations and new aspects of your condition. After all, your condition is probably not in 'stasis' meaning that it evolves and changes on a daily basis, some things get a little better... some a little worse, and occasionally something new comes along just when you are doing 'good'.

So, no... I will not tell you not to get mad because you have every right to be mad!

I am going to ask you to do something much harder than to not be mad... I am going to ask you to turn that angry energy towards something positive. Use that anger to fuel your fire for awareness and research for your condition.

You might think 'what can I do? I am sick and am only one person', but you have to remember that when you share your story and help raise awareness your voice will join with those you meet. You would be surprised what one voice can accomplish when that person takes the brave step to speak out, giving others the bravery to raise their own voices until your lonely cry becomes a roar!

I am MAD... things keep going wrong... I might not be able to change what is going on but I can raise my voice!

Social Situations... Cookouts and Parties

If you live in the Northern Hemisphere then you know what the warmer weather means... family cook-outs and Bar-B-Ques filled with gastric landmines and well meaning friends and family that want you to try a bite of this and a taste of that.

There is nothing harder on a Gastroparesis Belly than foods that have been lovingly charbroiled over an open flame and the often fat filled side dishes that go along with them and we often avoid these settings which makes us feel left out and alone.

There are a few things that you can do to step back into the backyard gastric bonanza without risking a painful night and hurt feelings, things that will allow you to once again join in the fun without having to pay for it later.

If you are able to attend (lets face it, planning anything in advance for us is a lottery... we never know how we are going to feel from minute to minute let alone day to day) then you can bring foods with you that you know are belly friendly that you can enjoy and even share.

Taking foods that you can eat might sound like a hassle, but you will be surprised at the reactions you will get and the people that will want to try your dish and might even choose it over the more common fare.

If you can still handle meats (ground and low in fat) then take *alternative meats* with you such as venison, buffalo or goat meat for burgers. Many large Grocery store chains carry ground buffalo meat and a few carry venison... for goat meat you will have to do some calling around to local butcher shops and meat packing plants but every region and area has it, you just have to hunt it down.

Go creative with cheeses... there are vegetarian cheeses, low fat cheeses and grated cheeses that can add a whole new dimension to the classic 'cheeseburger'.

Bring on the 'frozen beverage mojo'... nothing is more refreshing on a hot summer afternoon than those slushy treats so bring your fixin's and show how they can be nutritious and delicious.

Baked bean blues? Why does it have to be baked beans? Sweet potato kabobs (steam them first and peel then cut into cubes and skewer) marinated in apple juice with a pinch of clove is a fun addition when grilled and can fill that need for sweet side dishes without the fiber.

Toss out the 'home made ice cream' recipes (often they contain raw eggs and are just begging for trouble anyway) and turn that ice cream maker into an Italian Ice maker!

With a little creativity you can turn a backyard landmine into a Gourmet retreat that you can enjoy with your family and friends.

A few simple things to avoid those uncomfortable situations when someone wants you to try something you know you can't have-

1-Always have something in your hands... nothing begs a sample more than an empty hand.

2-Be polite but be firm - "I would love to try it but I am on a very strict diet from my Doctor... can I have the recipe though, I know my family would love to have it at home!"

Sometimes we get waylaid by well meaning friends or family members that want to offer advice or ask for detailed information about how we are doing... try to remember that they are only doing this because they care. Listen to the advice and try to fight the urge to explain to them exactly why what they are offering will not help, instead simply say "I will have to look into that" and when it comes to the request for detailed information you can tell them that there is alot going on at the moment and you would love to be able to sit down with them alone sometime soon to have a nice long chat about it.

Finally... if you make plans to go somewhere and have to cancel because of how you are feeling... allow it to be what it is, out of your control. Guilt will not make anything better and will only make you feel worse and your true friends and family will and do understand.