Outside the Window Looking In

Hello, let me introduce myself...

I am a person with an Invisible Illness.

I am often on the “outside of life looking in”, not through any fault of my own or anyone else’s but because of a disease or condition that I have no control over and I need your help.
Friends and family try to ‘help’ from time to time, encouraging me to do more, thinking that if I just stepped through the window I would feel “so much better” and I do try… the spirit is willing but the body is often weak and in pain.

Sometimes what is meant to be helpful suggestions or encouragement comes across instead as criticism or makes me feel guilty.

“We missed you this past Holiday, you will be at the next one won’t you?”

“You WILL come to this gathering… it is important… you can lay down in the bedroom or on the sofa if you have to but you WILL be there” (this one I actually got from my Mother-in-Law as I was in a recliner trying hard not to pass out from pain with her hovering over me, her face inches from mine, refusing to move until I agreed to be at a gathering in a few weeks time even though I had no clue if I would be physically able to attend)

“I know that you are on a restricted diet and this is a food you can have, I am making it and you are eating it” (When told that I was not able to eat anything that day when I attended that gathering even though I was feeling rotten to avoid hurt feelings)

“Why aren’t you eating anything?”

“You don’t visit enough; I rarely get to see you”

“Come on over, we are going to the pool” (knowing I cannot get in or out of a pool that does not have a lift or wheelchair ramp with a water chair for getting in and out and cannot sit in the heat at poolside due to my health)

“I would have invited you, but you rarely can come anyway”

I know that the intentions are the best… but when a person is so very limited in what they can do and when they can do it can add heartache and hardship to any relationship and can lead to estrangement and even avoidance.

I feel guilty… guilty that I cannot visit friends and family then added to that guilt comes ‘after guilt’ when I am gently confronted about not attending “you were missed” and I grow afraid to even attend some things because I know that if I do all focus will be on what I am eating or not eating… am I moving around too much… how am I feeling… reminders that I missed gatherings in the past and urgings to try my best to come more often.

Here are some helpful hints… things that can be done to reduce the guilt and stress…

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  Invite with the understanding that I will attend if I can. IE- “We would love to have you there if you are up to it” I will try my best to be there, but if I can’t please know that it was not a choice I made lightly.
  


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  Avoid asking what foods I can or can’t have, because that can change daily or even hourly and I will probably bring what I can have with me anyway. IE- I might be able to eat mashed potatoes that day, but not necessarily your Grandma’s famous mashed potatoes because everyone has a special recipe that they use, a family recipe, that may have ingredients that I cannot have and if you go through all that trouble and I am not able to eat it anyway it would hurt your feelings or I would eat it to keep from hurting your feelings and suffer the consequences for it.
  


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  Consider informal ‘spur of the moment’ activities. I often cannot plan things in advance and when I am having a good day I would love to be able to do something, even visiting the grocery store can be an adventure and more fun when shared.
  § Refrain from asking me how I am or if you do ask mean it because you will be told…or commenting on how I look… I know I look tired and not at my best. I also probably do not feel like going over my last Dr appointment in detail and having to answer too many questions on a good day… I want to be ‘normal’ and not have to drag my condition along with me.
  


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  If I am having a bad day… ask if there is anything I need… often I am unable to get to the store and need something like toilet paper or milk. Even something as simple as asking means a lot.
  


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  When I am able to attend an activity do not make a big fuss about me being able to be there to encourage me to attend more things, it only makes me feel guilty that I have missed activities and puts a pall on the visit.

I would love to be inside the window with friends and family instead of being on the outside looking in… please leave the window open so that when I can be there I have a way to reach you and at the same time know that I would love it if you reached through the window to me with understanding.

Be the BOSS!

Here are some terms that I think tend to confuse the average consumer (patient) when it comes to Physicians and all aspects of the Medical Field-

• Doctor's Visit


• Go to see the Doctor

Now... why in the world are those terms confusing?

Forgive me if I am wrong, but the last time I went to visit someone I did not have to pay for the privilege and certainly did not have to pay more for a 'special' visit!

I also did not go to "see" the Doctor... I can do that for free by sitting in a Hospital lobby, seeing hundreds of doctors in a single day!

What we tend to forget is that the Physicians we "see" are actually subcontractors... we make a contract with the Insurance Company, in a sense, hiring them and they in turn have a list of subcontractors that we can choose from to serve our needs. We forget that WE are the upper management in all of this, we are the BOSS!

We pay our 'employees', our 'subcontractors' to do specialized work and trust them to do the work they have been hired to do, but somehow we have lost sight of the fact that we are the ones that really call the shots.

You need to take an active roll in your Health Care...

Would you hire a roofer to come in and put a new roof on your house then let them call the shots as to the color, price, design and timeline? No, you would watch them carefully and make sure that your wishes were followed and would refuse to pay until the job was done to your satisfaction.

You need to know what tests are being done and why, what treatment options are available, what you need to do to be prepared for any emergencies and what the future might hold so that you can make the best decisions in your own best interest.

You would fire an employee that did not return phone calls and would never even consider calling in a plumber that did not understand the plumbing in your house.... why accept a Doctor that never returns phone calls or does not understand all of your medical conditions?

The terminology used can be very confusing... to 'visit' tends to denote a casual atmosphere and to 'see' makes you believe that just being in their presence is enough, but it isn't.

If your Medical Subcontractor is not living up to the roll of a good employee it is time to put out the "Help Wanted" sign and find one that you can work WITH and will work FOR you.

Walk the Walk and Talk the Talk

This week (August 22-28th 2010) is the First Annual DTP (Digestive Tract Paralysis) Awareness Week on Facebook, Sponsored by G-PACT.ORG as part of their celebration of their 9th Anniversary in existence (August 23rd) and people across Facebook are changing their profile pictures to G-PACT colors of lime green and yellow in a show of support and posting Awareness messages in their updates.

Those of us with Digestive Tract Paralysis conditions tend to talk in initials when we speak of the conditions involved and the treatments to keep us alive, so I thought that I would share a small 'translation' for those who see these mysterious initials popping up so that they could follow the discussions more easily.

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  DTP- Digestive Tract Paralysis


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  GP- Gastroparesis- delayed gastric or stomach emptying


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  CIP- Chronic Intestinal Pseudo-Obstruction- when the small intestine has nerve paralysis and reacts as if there were a physical obstruction with all the symptoms of a physical obstruction but no obstruction can be found in testing.


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  DS- Dumping Syndrome- accelerated gastric or stomach emptying


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  J-PEG- feeding through a tube placed through the abdominal wall directly into the digestive tract


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  TPN- IV nutrition delivered directly into the peritoneum or abdominal cavity


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  NG- Naso-gastric, a tube fed in through the nostril and down the throat to deliver nutrition to the stomach


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  NJ- a tube fed in through the nostril and down the throat to deliver nutrition to the small intestine, by-passing the stomach


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  GES- Gastric Emptying Scan- a test used to diagnose Gastroparesis and Dumping Syndrome

It is much easier to talk the talk and help those with Digestive Tract Paralysis raise Awareness if you can understand the 'lingo'... now it is up to you to walk the walk.

There are many things you can do to help Raise Awareness, if you have a Facebook account you can go to www.facebook.com/g-pact and see all the wonderful Awareness activities going on. There are videos on youtube made by sufferers telling you in their own words what DTP does to them (including a 4 year old girl), suggestions for status messages that you can use to help raise Awareness, pictures that you can post and use as your profile picture, letters you can send to politicians... the list goes on and on.

Four Paws up for Gastroparesis

Some people are still shocked to hear that animals can suffer from Gastroparesis and other Digestive Tract Paralysis conditions and are amazed to hear that I, as a Gastroparesis sufferer, happen to be owned by a Long Haired Chihuahua who also has Gastroparesis!

Loki (the above named Chihuahua that owns me) is not alone in the canine community when it comes to having Gastroparesis, here is another dog with Gastroparesis who owns a blogger! (http://starcraving.wordpress.com/2008/01/12/gastroparesis-my-dog-the-good-the-bad-the-crunchy/)!

In fact, if you do a search on the Internet about Electrical Stimulation for the treatment of Gastroparesis you will find that dogs with Gastroparesis (mostly diabetic gastroparesis) were the used to test the Gastric Pacemakers that help so many Gastroparesis sufferers. (http://www.uptodate.com/patients/content/topic.do?topicKey=~7XXoSLm_kv_Ho)

The fact that my dog was diagnosed before I was saved his life and gave me a better understanding of Gastroparesis and what to expect by watching him as he went on a low fat low fiber prescription diet.

Loki was my Service Dog, and still is in the Home (I have various mobility issues and he helps me with many daily tasks) but he had to retire from working out of the home because of the stress it put on him. He became very defensive of me, if I was hurting and he was hurting then no one could come near me and this is not acceptable in a Service Dog.

We have a very close bond, when I talk to him he is always looking into my eyes, head cocking to the left and the right as he tries to make out the strange noises I am making (He humors me alot in this, lol) and I can always tell when something is wrong and what is bothering him. He will just look at me in a certain way and I know that his belly is hurting, or he has a headache and when he feels he needs one he will bring me the TUMS bottle for a quarter of a TUMS and sometimes will not touch it until I have one if he thinks I need it.

The truth of the matter is that if an animal has a nervous system then they can suffer from the same nerve issues and damage is humans, and this includes vagus nerve issues. Dogs that seem to throw up undigested food hours after eating (cats and other animals as well), have 'poor appetites', are 'picky eaters' or always seem to be eating grass might very well be suffering from Gastroparesis.

Loki has a few quirks that go along with his tiny pawed walk with Gastroparesis... like the fact that he refuses to drink! He used to be willing to drink from a water bottle (he has never been willing to drink from a bowl, maybe because of the air that is taken in making him uncomfortable) but now the only way he will take in water is with his food. This is not as big of an issue since he gets many small meals a day and I monitor carefully how much water he gets a day, but when I am not able to be with him he often will refuse a meal and that worries me.

There are three things that he will lap up with a gusto... any smoothie (yes, I have made him special little smoothies on hot days to encourage fluid intake), iced coffee (he goes absolutely nuts when he sees one but only gets a few drops) and green bean broth!

This pup refuses to drink meat broths, lick ice cubes or touch any of the special liquid treats that he has been offered... he knows what he likes and what does not make him sick and that is what he will drink and nothing more. (I wish I had that kind of will power at times)

This does not mean that he is not above snorffling up the odd tasty bit at rest stops when we are on a trip so we have to keep a very careful eye on him when he is walking us at one of those because the stray french fry, bit of leftover sandwich that did not make it in the trash or other goodie strangers were kind enough to leave on the ground just for him is absolutely irresistible! (If they left Gatorade on the ground, however, he would not touch it with a 10 foot cat!)

So, today, Loki is giving four paws up for Gastroparesis in solidarity to his canine GP sufferers! (Four paws up is a wonderful thing to give and puts the belly in the perfect position for a good gentle rub :) )

Being your own Advocate for Health

You know the drill... you go to a new Doctor or to the ER and you are in a Medical 'no mans land' where you are depending on strangers to not only help you but understand you.

There are things you can do to advocate for your health in a way that increases your chances of not only being heard but being treated in a more timely manner, increasing your chances of a better outcome.

• Keep an up to date record of your health on your computer that you can print and take with you whenever you go to the Doctor or Hospital.

This should include all of your diagnosed conditions, when any symptoms started and when they were diagnosed as well as an updated list of medications (include dosage, times and any side effects) allergies (any and all, not just medication) as well as complications that anyone giving care should be aware of. (If your veins are damaged from over-use, tend to roll, etc)

• Hand the printed information to the Doctor so that they can read it.

This might seem like a 'no-brainer' but in times of stress we often forget to give the information needed and when you try to explain verbally to a Physician what is going on they may be listening... or they may be thinking about he patient in the next room and if this medication would be better for them or if they should paint the living room blue this year. If they have a paper to read in front of them they are more likely to retain the information you want them to know.

• Have someone with you that can give you support and be your voice if you do not think you are being heard.

Patients tend to become meek in the presence of Medical Professionals, we are taught to respect authority figures and because of that it is not uncommon to leave an appointment or be sitting in a Hospital room with the frustrated feeling that you were not heard. Having someone with you that knows your situation can not only give you moral support but they can speak up for you if you start to shrink back from the authority figure.

• Take a notebook and take notes.

You need to keep a record of what is being said, this way if something changes you will be able to ask why the treatment has changed. These notes will especially come in handy if you are in the ER so that you can go over them with your Primary Care Physician when you do a follow-up.

• Ask what medications are being administered before they give them and why they are being given.

Never assume when a nurse comes in to give you a pill or inject something into an IV that it is the right medication or it is something you should take. Medical mistakes, though rare, do happen and often can be prevented if you ask for confirmation of the medication when in doubt. (I have had nurses waltz in and grab the IV line with a syringe in their hands ready to inject a medication into it and have stopped them to ask what it is in the past, the nurse would be harried and short with me as they respond "morphine for your pain that the Doctor ordered". I am allergic to morphine and if I had not asked the consequences could have been deadly. I have even had to leave an ER "AMA" in the past because things like this would happen and I did not feel safe in that environment. Leaving AMA is extreme, and I do not recommend it or condone it in any way, I am just sharing this with you as an example of why you need to always ask before anything is given.)

• Make sure that all people entering the room either wash their hands in front of you or use anti-bacterial agents in front of you.

Cross contamination can be a very big issue and is never intentional, do not be afraid to request that people wash their hands, it is the rule in most places and you are only protecting your well being. At the same time you should carry anti-bacterial gel with you at all times and use it often... if you touch something anyone else touches... use it.

As a Patient you do have to take an active roll in your health care and advocating for your health is an essential part of this.

Limitations are not just for food...

People that suffer from Digestive Tract Paralysis know that they have limitations on what foods they can digest and what foods they must avoid but they often ignore or push limitations that their limited dietary intake inflicts on their bodies.

First we have to look into exactly *why* there would be physical limitations when we are talking about internal organs and not structural muscles and ligaments and why it is important to make the connection.

What we are able to eat and digest has a huge impact on every system in our bodies. Different parts of our anatomy require different minerals and vitamins to function properly and when we are lacking in those vitamins or minerals we must take extra care to monitor any signs of deficiency.

You might think that you are doing good, you are maintaining your weight and able to keep more food down, but just because you are managing to take in sufficient carbohydrates does not mean that you are not suffering from malnutrition or deficiencies that can have an impact on other aspects of your health.

Here are a few key vitamins and minerals that you need to maintain a healthy body, many of them you already know about but some might come as a bit of a shock to you as to just how important their roles are.

• IRON- We all have heard of anemia, and iron deficient anemia is not uncommon in those with Gastric Tract Paralysis. Many of the foods that contain iron are foods that we must avoid due to the fat content or the fibrous nature of those foods. (ie- red meat, liver, organ meats, dark green vegetables) Even when we do try to get some of these foods into our diets the stomach often does not 'grind' the food enough for the over-taxed small intestine to be able to digest the foods meaning that the iron is not extracted. Common signs of anemia are : fatigue, lack of usual energy, pale nails, scalded tongue (feels like you drank a hot beverage that burned your tongue) and difficulty thinking. When you have Iron Deficient Anemia it means that your body is lacking enough iron to create mature healthy red blood cells. Your red blood cells are necessary for transporting oxygen and nutrients to your cells and if your blood cells are immature or of a smaller number your heart must pump harder to get the smaller number of cells through your body faster, often leading to a faster heart rate. Iron can be supplemented in the form of pills, liquid supplements (a note here- it is extremely difficult to find a liquid supplement that does not contain artificial sweeteners so if you have an allergy or sensitivity to artificial sweeteners please carefully read the ingredients to make sure that there are none. Check words you do not know on the Internet to be sure that you are not taking something that can harm you) and in some more extreme cases iron infusions or transfusions. A simple blood test from your Doctor will tell you if you are anemic and if you are then your Doctor will guide you in how best treat your anemia. You should never try to self diagnose and treat yourself with Iron (Ferrous Sulfate) since too much Iron can cause troubles of it's own.
• MAGNESIUM- Low magnesium levels can lead to muscle issues such as cramps and twitching. This may not seem like a big issue, but remember that your heart is made of muscle! Magnesium is usually found in foods such as legumes (peas, beans), bananas and apples as well as some green vegetables. Often, out of the foods we can find magnesium in the only one that is tolerated is banana since raw apples and applesauce can cause issues die to the fiber content and legumes are packed full of fiber. This is where apple juice can come into play. Pasteurized apple juice (not pressed apple cider, since it often contains a high amount of fiber) can help replenish magnesium and can be served hot or cold or used in the place of water when making gelatin dishes which are often tolerated well.
• PROTEIN- Protein is the building block of our bodies and it used to create new cells and when our diets are low in protein our bodies will actually take protein from our existing muscle cells to make sure that the vital organs are provided with the protein they need. This can lead to muscle aches (you feel like you have run a marathon) and fatigue as well as issues with your liver and kidneys and spleen. Your liver, kidneys and spleen are your bodies filtration system... your liver filters out and manages fat storage, your kidneys filter out excess fluids and your spleen filters out damaged or old blood cells. When you are suffering from protein deficiency and your muscles are being broken down they damaged muscle fibers release a waste product that is difficult for your body to remove and can be detected in blood tests easily. It is important to try to focus on foods high in protein so that your body does not try to steal protein from your muscles. Foods high in protein are - eggs, meats (goat meat is high in protein and low in fat), nuts and dairy products. There are also protein supplements on the market that can be added to foods to help bulk up the protein, just be careful to read the ingredients list and check any words you do not understand on the Internet so that you can avoid any food allergens.
• VITAMIN D- We have all seen it listed on milk products and most of us know that you need sunlight to help metabolize it, but did you know that you needed calcium along with the vitamin D in order for our bodies to utilize it? Vitamin D deficiency can lead to aches and pains as well as weakness and fatigue that can rival Chronic Fatigue Syndrome in severity. A simple blood test can check for vitamin D deficiency and if found your Doctor can put you on a high dose supplement to restore the levels, but often you are not told that you also need to increase your calcium intake in order for your body to use vitamin D. Foods rich in vitamin D are often foods that are also rich in calcium, such as dairy products, dark green vegetables and legumes but they can also be foods that are hard for those with Digestive Tract Paralysis issues to consume or digest.

These are just a few of the essential vitamins and minerals that are needed and often lacking in the diets of those with Digestive Tract Paralysis or the bodies of the sufferers have trouble digesting and for that reason it is vital that you ask for a full blood work-up when you are at your Doctor's office so you can check your vitamin and mineral levels and make the changes you need for a healthier body.

Okay, now we know *why* we might have to accept limitations on more than just our dietary lifestyle, but *what* does that mean?

If you suffer from a form of Digestive Tract Paralysis chances are that you are also suffering from at least a mild form of malnutrition and vitamin/mineral deficiency and that means that you have to start listening to your body and accepting a few limitations that in the long run will give you more control over your overall health.

You remember life before the Beast in your Belly came to live with you and you remember being able to do things and recovering quickly from exertion and it is ingrained in you that you should still be able to do those things, so you push yourself constantly... trying to prove to yourself more than anyone else that you are 'okay'. You ignore things that in your 'healthy' days would have had you stopping for a rest because 'these things need to get done' and when you finally do have to stop it takes you much longer to recover and things just keep piling up more and more.

You have to accept that life has changed and that you are not the person that you were before all of this happened. You can still do things that you used to do, but you have to be willing to listen to your body and when it tells you that it needs a rest you have to let it rest. This does not mean giving up the things you love it simply means taking things a little slower and accepting the limitations as facts of your life. Weeds will grow in the garden, but larger weeds are easier to grab and pull out anyway so let them go a day or two. The carpets will not disintegrate if you wait until tomorrow to vacuum.

You want to go on a 'picnic' with the kids but you can't take the heat outside because you are dehydrated? Spread a blanket on the floor, put in a fun movie, turn off the lights and have an afternoon 'picnic with the stars'.

This is a chance for you to bring out your creative side and find new ways of doing old things.

You have to listen to your body, you have to give up the guilt of 'not being able' to do things and instead find new and fun things that you can do and share doing with others that do not wear you out and tax your body.

Instead of hosting a 'cookout' with friends and neighbors, have a 'Smooth-in'! Invite everyone over for a Smoothie Party and have a contest for the most original concoction, a BYOB (Bring your own blend-ables) event that is not only fun but exposes them to your lifestyle and opens the door to share a part of your life. You can even make it a costume party and have people come in 60-70's costumes for a "Smooth Groove".

The most important thing is to take those limitations and make them work for you and not the other way around.

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