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.

• 
  
  DTP- Digestive Tract Paralysis


• 
  
  GP- Gastroparesis- delayed gastric or stomach emptying


• 
  
  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.


• 
  
  DS- Dumping Syndrome- accelerated gastric or stomach emptying


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


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


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


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


• 
  
  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

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.

Well... at least the air DID smell like Chocolate!

Yesterday was my trip to Hershey Medical in Hershey PA... and the only good that came from the trip was that the air smelled like Chocolate...

The Doctors were very helpful and kind and went over everything with a fine tooth comb (they discovered a brand new heart murmur... gee, I love souvenirs!) and one by one all treatment options were scratched off the board for one reason or another until we were left with a blank board.

Fact is... there is no treatment for me other than the diet that I already follow and maybe acupuncture for pain.

The Doctors were upset that I was not diagnosed earlier... had I been diagnosed before it got to this point there might have been a few treatment options left available for me to try but with how things stand now there is nothing... sighs.

So... where do I go from here?

Well, if a Clinical Trail ever begins for an injection-able medication (in the way insulin is injected) I will be entered in that study.

Other than that I am just going to continue doing what I have been doing... there will be no surgeries to fix my hernia or replace my knee or amputate my foot because they cannot do the surgeries when I cannot take any of the heart medications that I need so I guess that I can come to grips with that.

I will continue my Gastroparesis Awareness Advocating with a vengeance... if I have my wish then no one in the future will ever be in my situation again because their Physicians will know the signs for Gastric Motility disorders and will know how to test for them before they become untreatable and will also know how to recommend the proper diet and nutrition to make their patients lives more comfortable.

Big Pet "Pee"ve

As I get ready today for my trip to PA (a 7 hour trip in the car, or as I call it "torture with a view") one of the things that I have to make sure is replenished and packed is my bathroom sanitizing kit.

Not everyone travels with one of these... but I had to start taking one with me out of dire necessity!

I am handicapped... I must use a forearm crutch or wheelchair to move about (my Dr has told me to stick with the wheelchair but I am in denial and try to walk when I can) and that means that when I am in public I must use the handicapped stall of the public bathrooms.

"What do you have to complain about?" you may be thinking "that is the palace of public restroom territory!"

In the average fast food restroom there is one handicapped stall... in most interstate rest stops there might be as many as 4... but guess which stalls are almost always taken first by just about everyone entering a public restroom?

Women prefer using the handicapped stall because there is more room in there to 'hover' comfortably... this means that they can stand and hover over the toilet seat without touching it while they urinate. This also means that they are urinating all over the seat as well most of the time.

I am handicapped... I CANNOT HOVER... the handicapped stall is made the way it is not so women can pee comfortably all over the seat but so that those with mobility issues have a stall that is big enough to maneuver a wheelchair into or has handrails for those with weak legs to help them get up and down to that seat that the hoverer's have so kindly urinated all over.

Before I can use a public restroom handicapped stall I must put on vinyl gloves and clean the seat and surrounding area with Clorox disinfecting wipes, then dry the seat, then place a flush-able seat cover over the seat. Of course, before I do any of that I have to wait looking at all the empty regular stall as a hoverer gets comfortable in the handicapped stall.

When I am done I must wash my hands then roll outside... then wipe down the wheels of my wheelchair with the Clorox wipes (since the urine has 'sprinkled' on the floor around the toilet as well) then use my waterless sanitizer on my hands...

This might seem like a bit of overkill in being upset over something so trivial... but part of my 'joy-oh-the-belly' is sudden onset diarrhea that can strike without warning... so imagine that you have to spend 5 minutes cleaning a wet toilet seat while hoping that you do not have an accident 3 and a half hours from home and your destination and tell me how you would feel.

So I beg all the able bodied public restroom users of the world... please use the normal stalls first and the handicapped ones only if no normal ones are available, (This does not go for mothers with small children or if the changing table is in the handicapped stall) and if you do have to use the handicapped stall... clean up after yourself as much as you can.

Ode to the Online Self Diagnosis

My Doctors leave me frazzled,
So I Advocate myself,
By Browsing every website,
And medical Book upon the shelf.

I enter all my symptoms,
Singly and in pairs,
Hoping for a flash of brilliance,
And not Physicians blank stares.

Then I come across a listing,
That lists some of what I feel,
Dull eyes and listless spirit,
And my excitement do I steel!

Upset belly, loose stools and depression,
Yes... yes and yes!
Perhaps I found the source,
Of all of my distress?!

With a sense of hope I read on...
And wouldn't you just know...
I have just diagnosed myself...
With Canine Parvo!

Sheepishly I move on,
Searching once again,
This time for a human disease,
And not one of Man's best Friend.

I will endeavor on,
Hunting down the source of my ills,
But looking at the bright spot,
At least I don't need the Heartworm pills!

The Laws According to Loki

I thought I would share with you the Laws According to Loki, otherwise known as "Laws of the Chihuahua"

1. If I sniff it... it is mine!
2. If I see it... it is mine!
3. If I lick it... it is mine!
4. If it squeaks... it is mine!
5. If I sleep on it... it is mine!
6. If I sit on it... it is mine!
7. If it fits in my mouth... it is mine!
8. If you are eating it I want it!
9. If you are drinking it I want it!
10. If it stinks I shall roll on it!
11. If it is broken... it is yours!
12. Cats are evil!
13. You may only drive with Chihauhua supervision!
14. More laws may be added if you get something new I want!

Road Trip... 40 years and counting

I am preparing to finally go to see a Specialist at a Tertiary Hospital (Hershey Medical Center in Hershey, PA) for my Gastroparesis and CIP and I am anxious over how this will all work out.

I do not have the best of track records when it comes to meeting new Doctors and trying to not only be heard but understod when I go over my very long medical history which just happens to be filled with endless tests and proceedures to try to find out over the years what exactly is going on in my body. During that time I have been diagnosed with so many things that seem to have no connection to each other and did not explain what was going on as well as way too many instances of "we can't find anything".

Here is just a brief listing of all the things that have been discovered as 'incidental discoveries" during testing through the years-

• 
  
  NASH- non-alcoholic stetheo hepatitis, a fancy phrase for non-alcohol related fatty liver disease (will hit on this one later)


• 
  
  Hashimotos Thyroiditis


• 
  
  Bells Palsy


• 
  
  Restrictive Esophagitis


• 
  
  Erosive Duodentis


• 
  
  Sinus Tachycardia (racing heart, feels like hard thumping)


• 
  
  Ventricular Tachycardia (racing heart that feels like a million butterfly wings beating and hard to catch your breath)


• 
  
  Left Ventricular Hypercardia (luckily it is mild)


• 
  
  Asthma


• 
  
  Partially collapsed right lung


• 
  
  neuropathy in both arms


• 
  
  Abdominal wall neuropathy


• 
  
  Ocular Migraines (had the full blown version of Migraines from the age of 8 until I was 28 but now I just get the painless light shows that leave me blind for about an hour at a time)


• 
  
  Free fluid in abdomen and pelvis


• 
  
  Diverticulosis


• 
  
  Tinnitis


• 
  
  Joint hypermobility Syndrome


• 
  
  Sjogrens Syndrome


• 
  
  Gastroparesis


• 
  
  CIP


• 
  
  6.7 cm left ovarian septated cyst


• 
  
  Extreme Labile Hypertension


• 
  
  Severe heat intolerance

The list just goes on and on and on....

Almost all of these things were found in testing when looking for other things and many times I was not even notified by the Doctors that they were diagnosed and only discovered it when I had to get a copy of my medical records to take to one local specialist or another for a consultation and I read my records.

I have had Doctors tell me in the past that they found nothing (when I read the medical files the tests showed that something was found as an 'incidental' but it was never mentioned) or they would say "that is just freaky" or "I don't know what to do about that" and nothing would ever be done.

I was sent to a Kidney Specialist at one time that went over my symptoms with me (the labile blood pressure and tachycardias) and was told on that first consultation after 30 minutes that there were only three things that could cause my symptoms... Pheochromocytoma (been tested for that so many times the sight of a 24 hour urine catch bottle gives me hives) which I do not have, being paralized from the neck down (which I am not) or being a binge drinking alcoholic. Well, since it was not the tumor or being paralized he said "you have a drinking problem and I cannot help you until you admit it and stop drinking". I was LIVID because one of the things that I cannot tollerate is alcohol in any form... it triggers the tachycardia and makes me flush purple within a minute of even a sip. I do not drink and definately am not a binge drinker... I did have a time in my 20's that I had a brief issue with alcohol and I am honest with that but at that time I had not had even a sip of a wine cooler in 6 years. To add insult to injury my best friend growing up had just died of Liver failure due to her alcoholism a few weeks before that.

I went back to my Primary Care Physician at that time (changed Dr's soon after that) and told him that I would NEVER go to see that so called 'specialist' again and was told 'well, that was my last option for trying to find out what is going on... I don't know what else to do'.

There have been many times that I have simply stopped going to Doctors at all... what was the point other than spending money I didn't have to be told "we can't find anything" or "you are stressed".

It was only after endless badgering my my husband that I agreed to see one last specialist, the one that is referreing me to Hershey. I went in expecting the 'same old same old' carrying all my medical records and printed pages of my symptoms and allergies. I sat there as he read them and waited to be told I was just nuts and go home. Instead he said "I think you have delayed gastric emptying and I want to do a test". Sure... one more test... whatever...

I went in for that test on my 41st birthday... a third of a cup of oatmeal with radioactive tracer (am allergic to eggs), lay on a table for 90 minutes... and go home.

I did not hear anything from the Doctor so expected nothing when I went in for the follow-up and was shocked by what I heard.

"Didn't you get my letter?"

It seems that the test was positive, I had a marked delay in gastric emptying (shocked me because I had been having a 'good week' bellywise when the test was done).

There were things that could be done, he told me, but my options were extremely limited because I could no longer keep any oral medications down (I can swallow pills, but they will not stay down because of the damage to my stomach from ulcers from all those pills over the years just sitting there eroding my stomach lining) and all the liquid options and disolving options have artificial sweeteners in them so Diabetic patients can use them, but artificial sweeteners are full blown migraine triggers for me so I could not take them.

The only reason that he thought to even test me was because I had started to lose weight with no change to my eating habits... for over 1o years I had gained weight steadily on around 500 calories a day, something no Doctor ever believed. It was not until after I started losing weight that someone took notice... it did not matter that for two years I was unable to take any medications for my blood pressure or heart rate or thyroid issues.

I am even more limited because I cannot have general anesthesia (in 1998 during my first of 19 surgeries over the years on my left ankle there was an issue during surgery... in the middle of the operation my blood pressure rose quickly and when they treated it my blood pressure fell and was not able to be registered at all. They gave me a fluid overload to try to get a blood pressure back which enlarged my heart 4x normal size and filled my lungs with fluid and I was in ICU for a week on a ventilator with my foot being held together by cellophane wrap as they waited to see if I would live or die. There is an element in general anesthesia that I am allergic to it seems. All ankle surgeries after that were done under spinal anesthesia or local... lucky me I got to feel every cut and stitch of the ones under local) so a Gastric Pacemaker is not an option for me, I am allergic to adhiesives so a J-Tube or IV nutrition is not an option for me... that leaves what?

I have a left ankle that is awaiting amputation, a right knee that needs to be replaced, a hernia that needs repair and a few other operations that are a bit more urgent but no surgeon will touch me until I am able to take my blood pressure and heart rate medication. Add to this that I am allergic to all narcotic pain relievers and the Pain Management Clinic at UVA has run out of options for me years ago so there is nothing I can take after any surgery for pain management and you can start to get an idea of where I am.

I am afraid to even be hopeful when it comes to my appointment on this coming tuesday... afraid that I will either get the brush off "it does not look like an issue" or even worse... "there is nothing we can do".

My CIP attacks are coming on more and more frequently... I have been having them weekly and sometimes a couple of them a week. They come on with no warning and leave me trembling and weak and in unbearable abdominal pain. I am living in a chronic state of dehydration... I have lost the ability to throw up when ill now unless I manually do it for relief... I can feel it in my throat but it is like there is no strength to get it all the way out. Some nights I cannot even lay down because I go into V-tach when I lay down which makes it hard to breath and will wake gasping for breath if I do fall asleep or the pain is just too strong for me to sleep (between the ankle popping out of joint, the arthritis in the knee, the abdominal pain and chest pains I am lucky to be a 7 out of 10 on a good day).

If they tell me 'there is nothing we can do' I don't know what I will do... I just cannot keep going on like this but somehow I will find the strength to keep going on because I have a mission and that is to raise Gastroparesis and Gastric Motility Disorder Awareness! It may very well be too late for me but I am going to do everything I can do to see that people are made aware of these conditions so that they can be diagnosed early and get the treatment they need and deserve. If I get my wish then no one will ever have to go through what I have in the future.

I created the Gastroparesis and CIP wishing star for that reason and when I am up to it I am on Twitter and Facebook spreading awareness... I am writing to my local news and thanking those who write and publish articles in newspapers and magazines about the condition as well as working on my websites (gastroparesis-awareness.com, .net. .info and .org) and anything else I can think of to get the word out there.