Friday, September 30, 2011

Mood- quasi-vacant
Health- quasi-living

Today I tried again (forever the optimist) to call VCU and see if I could find out what was going on when it comes to the two tests that were supposed to be scheduled... the first call ended after I was on hold for about 20 minutes and it hung up on me and the second call ended with me giving my name and number for a 'call back'.  They have never called back before and I doubt seriously that they will call back now.

On Monday I will be calling in one last time, and if I do not get any answers I will tell them to cancel my follow-up appointment because it would be useless to go for a follow-up on tests that are never done!

The care and concern for human life (other than their own) is shocking in it's lack.  

I also have not gotten a call or e-mail response to my plea to the Doctor at UVA... and this leaves me in the un-enviable position of having no possibility for care at all.

Yes... in America if you do not have Insurance then you become sub-human and as such you do not deserve medical care.

The SPCA will arrest you if you neglect an animal and do not get them the medical care you need yet there is no Govt entity that makes sure that human beings who need care are not neglected and left to suffer.

(Yes, a rant... I am in pain and grumpy)

On the bright side I had the mold for my new ankle brace made today (thank goodness this is a Workman's Compensation issue) and hopefully with the new brace (which I get in about 2 weeks) my ankle will stay in joint for a change.  I decided to go against getting a solid black one and picked a pattern with small boats and nautical items on a blue background.  It many not go with everything I wear, but I needed a bit of whimsy after today.

Thursday, September 29, 2011

Mood- iffy
Health- iffy

Super tired today... just keeps having v-tach attacks one after the other and I noticed that my blood oxygen levels seem to be dropping... not to a dangerous level (my normal is 99% which is great but today I have been around 95% which is abnormal for me) but still another sign that my health is trending south.  It does seem to happen when my heart is acting up that my blood pressure and blood oxygen start to go bonkers and this seems to be the case.

I have had percentages in the 80% range before, but I really do not want to go there again.

Add to this the rebound pain in my abdomen and I am wondering if a trip to the ER is in my future... not that I would actually go there (I am stubborn) but it might be a good idea to start thinking about it.

No call back from the Dr's office at VCU (I know, I am soooooo shocked) so ever going back there seems to be officially off the board now.

Unfortunately, there has also not been a response from UVA as well... and this leaves me not only with no options left but no place to look for new options.

Oh well, such is life...

Wednesday, September 28, 2011

Mood- ????
Health- broken record

Took a chance and e-mailed a Doctor at UVA hoping that they might be willing to help me in a last ditch effort to get medical treatment.  (Yes, there is still fight in the old girl yet!)

It is amazing how, when someone is at their lowest (and believe me, yesterday was about as low as I go) something or a series of things will happen that will give a glimmer of light in the darkness...

When I dragged myself online I found a response to yesterday's blog and was able to connect someone (who is a new part of my Gastroparesis Online Family now) to probably the best online support group I know of and there is absolutely nothing in the world that can add light to my life than helping someone else.  

Then I checked my e-mails (to see if the Doctor responded) and though he had not I had a very nice surprise in the form of a  inquiry from a Researcher and Global Medical Analyst who had found my website and requested more information (links to where I got my facts and figures) which I was happy to supply.  This reminded me that even though we do not see it happening right in front of us all the time there IS research going on and people are looking more into this incurable disease.

My personal health is no better... as I am sitting here I am struggling with the meal I ate three hours ago as it tries to creep back up my throat.  I did not want to eat at all but my magnesium is so low that the muscle tremors are almost like convulsions lately and I decided to risk some ground goat meat (lowest fat meat available and high in protein, iron and magnesium) but it is sitting like sharp rocks in my stomach and though I cannot vomit seems to be trying to crawl back up my throat instead of into my small intestine.  I have been really pushing the fluids as well lately and that is not helping matters at all, but my urine output almost stopped completely and it is either push push push and suffer the consequences or avoid the added pain and distension and risk organ failure.

Also had a couple of fun runs of ventricular tachycardia today... popped my pulse oxometer on my finger to watch the show as I waited for them to end and get my breath back... pulse looking like a bunch of toothpicks lined up unevenly across the graph in the 240 range and oxygen dropping swiftly... but after about 30 seconds or so it would go flat then be a bounding pulse and irregular before leveling back out and my oxygen would go back up.

Some might be wondering why I do not call an ambulance when that happens... and the truth is that it would be over by the time the 911 operator got to the point of asking the nature of the emergency and I can't actually speak while it is going on anyway.  There is nothing that can be done after the episode ends... and if it does not end, well... no help could get here in time to make a difference.  I can't even call out in the house for help when it happens so I simply have learned to keep my pulse oxometer handy and keep a record of how often it happens, how long it lasts, the numbers and any residual effects.  I have had a minor heart attack in the past and have mild heart failure (LHV, where the left ventricle of my heart has thickened walls that do not pump effectively) and the truth is that panicking about it will not do any good so I just go with the flow and when it is done resume whatever I was doing.

So, anyway... today is a mixed bag but I will take the good with the bad and be grateful for the good.

Tuesday, September 27, 2011

Mood- spiraling the drain
Health- somewhere near the u-bend


Days like today make it harder than hard to keep on fighting.

This morning I called the Gastroenterology clinic at VCU once more to try to find out why I have not heard anything about the tests that were supposed to be scheduled... and EGD and a small bowel follow-through to try to discover why I cannot drink fluids.

The first call went to a voice mail which I have left numerous messages on in the past in the vain hope tat a person might call back.  Then I called back and pressed O bypassing the menu completely to speak with a real live person.

It seems there was no record of all the calls I have made trying to find out when these tests were supposed to be done.  I reminded them that since I was to see the GI again on the 21st of October that these tests could not wait forever, since the reason I was going back was so we could go over the results.  I was then informed that the Dr had my appointment date moved to December!  I am glad that I found this out, because no one bothered to call me and tell me that they had moved the appointment and I would have showed up only to discover that the 180 mile round trip was useless because they would not have seen me.

I put in yet another request to find out when my tests were to be scheduled (there is nothing in the system even saying the tests were ordered) and to find out the results of my blood tests.

This is NOT the first issue I have had with the VCU Health System...

1. The GYN I saw there to have my large septated cyst removed not only refused to operate because I am a poor surgical risk but she also stole my only CD copy of my abdominal CT's and Gastric Emptying Scan.  I told her it was my only copy and she asked if she could borrow it to have it copied to my files swearing she would return  it to me.  She never did and soon after left VCU to move to California.
2. The same GYN put in my medical records that I self injected progesterone into my hip every evening!  I have NEVER done this, and having that in my records could have had fatal consequences because I have a heart condition and had I had a cardiac issue and they checked my files they would have treated me as if I did... which could have been FATAL!
3. Same GYN insisted I get a hormonal IUD even though I had a life threatening PID (Pelvic Inflammatory Disease) with rupture in the past and when I checked the manufacturer I found out that since I had a PID I should NEVER get another IUD... the GYN said it would be fine.  The hormones in the IUD were also contradicted by many of my health conditions "nothing to worry about" she said.... I refused.
4. Same GYN then decided that the birth control shot was the way to go... even though the same medical conditions were contradicted by the manufacturer.  I refused.  (The IUD and shot would do NOTHING for the septated cyst that kept leaking and I still have no clue why she was insisting on them and not treating the cyst!!!!)
5. I had a surgical consult to discuss having my hernia repaired at the same time the cyst was to be removed... before seeing the GYN.  Without telling me that appointment was canceled and I drove all the way there to be told that I would not be seen.  A completely wasted trip.
6. The Gastroenterologist told me to EAT FRUIT to try to battle my chronic dehydration!  Knowing that I have Gastroparesis he told me this... after telling me that Gastroparesis was not something that was treated at all except with Domperidone which is not available in the US.  Fruit is a MAJOR no-no for those with Gastroparesis due to the high fiber content.
7. When discussing the fact that I could not drink the Barium oral contrast because of the artificial sweetener used (all Barium oral has artificial sweetener) he called to the radiology department and confirmed that I was telling the truth then asked what could be used instead.  It was decided that I would (now get this) drink IV contrast dye to get the study done... even though I am allergic to all IV contrast!  He said it was not an issue and since it would not be injected into my vein it would be fine????   Funny, last time I checked if you are allergic then you are allergic, but I desperately need the small bowel follow-through and was willing to take the risk as long as a crash cart was handy.

After all of these MAJOR issues with VCU I have decided not to ever return there... it is just not safe and I cannot trust them, which is sad since that is a teaching Hospital and this is the kind of crap that goes on there it does not give me much hope for the future of medicine.

My only other option for Healthcare is UVA... which is 4 hours away and would be even harder to get to because of the cost of gas on my husband's unemployment.  I know that they have the same indigent care program as VCU and I am going to try to see if I can be accepted but I do not know if it is really worth the fight anymore.

My health is declining... the pain in my abdomen is getting worse and worse with sharp stabbing pains... the nausea is unrelenting and I wish I could vomit and would give anything to have that ability back... the distension to my abdomen feels like I am being torn in two, the skin burns so bad... the ringing in my ears is keeping me awake all the time... the dehydration has my flanks aching hard like nonstop punches... I can't think half the time and am having debilitating mood swings and snapping at everything and anything because I just cannot follow what is being said and it is so frustrating.  My heart just keeps going into v-tach stealing my breath and when I try to sleep the quivering of my muscles shake the bed jarring me awake...

Yes, I know... I will bounce back and fight my way through this... but right now I have a wounded spirit and have given up.  I am so tired... I just do not have any fight left right now.  

It just should not be this hard to get treatment for a known condition or known conditions... it should not be impossible to see Doctors you trust because you lost your insurance and became no more to them than human garbage... to be told "come back if you ever have insurance again".  

I do not deserve this...

Monday, September 26, 2011

Mood- down
Health- gutter

I am pretty sure that if I were to be visiting a Doctor today they would instantly decide that my mood (depressed) was the sole cause of my Gastroparesis (as they are wont to do).

Here is how it goes...

They (the Doctors) will come in and do a quick exam or not then ask you about your symptoms and possibly discuss tests... then the gleam enters their eye and they ask the question that will make everything your fault no matter how you answer-

"How are you doing emotionally?  Are you depressed?"

This is a loaded question because there is no answer that will not have them turning it on you and making the fact that you are sick your fault.

If you answer correctly with-

"Yes, I am depressed... I have an incurable illness that makes my life a living hell" then your Gastroparesis is caused by you because it is a 'known fact' (though I have yet to find a single study that proves this in medical archives) that depression causes delayed gastric emptying and hence it is all in your head and what you really need is mental help from a Psychiatrist and not a Gastroenterologist. 

If you do not want to be told it is all in your head so you outright lie with-

"No, I am managing fine" then they assume that you are enjoying the attention you are getting for being 'ill' and are probably faking, and you need mental help from a Psychiatrist and not a Gastroenterologist.

If you try to sidestep with-

"I am no better and no worse than anyone else going through what I am" they then push you to give a more straight answer because obviously you are depressed or stressed which makes it all in your head or you are handling things fine which means that you are faking and need mental help.

Don't even try to turn the question on them with-

"How would you feel in my position" because they would assure you that if they were in your position they would be living an active life full of world travel and bringing peace to regions that have never known peace while gnawing on volcanic rock for nutrition and drinking ambrosia.

I would love to see them try to pull the same reasoning with anyone else who has a form of nerve damage!

Will they tell people who are paralyzed from the waist down that all they have to do is talk to a Psychiatrist and they would not only walk again but would run marathons?

Will they tell people with MS and ALS that their depression over having the conditions has actually caused the conditions and they need to get over it to be cured?

I cannot think of another condition where the victims are blamed so much by the Doctors for having it except for alcoholics and liver disease, smokers for lung cancer and the morbidly obese for diabetes!

We DID not do this to ourselves... we did not do dangerous activities to get this condition... there is no warning label on a virus that reads "Warning- catching this might cause you to never be able to eat another meal in your life without pain and nausea and could cause you to starve to death", no campaigns on TV or groups of outraged citizens banding together to stop the wanton destruction of nerve conductivity!

We are the VICTIMS yet we are treated like we have brought it on ourselves!

We are given 'the look' when we decline foods that we love because we know it would make us sick by friends and family...

We are blamed by Doctors, being told that because we have the condition and are depressed at the major impacts it has on our lives we are in fact causing the very condition that caused us to get depressed! 

There is a huge amount of stress and guilt placed on US because WE are being difficult... we refuse to simply fade away without a whimper... we refuse to eat things that make us sick just to avoid hurting the feelings of others... we refuse to suffer in silence all the time.

Yes, I am depressed!

Three days ago I was speaking to my husband about how much I loved and missed chocolate but could not have it anymore because it caused my GERD to act up severely and I would wake in the middle of the night choking on the contents of my stomach.  I cannot vomit (I lost the ability to do that no matter how much I wish I could at times) but food can still crawl up my throat if I bend over or lay down.

Today he had to run an errand and decided to stop at a dollar store and get me a 'treat', to be nice and because I have been so down lately.  He brought me a huge bag of all kinds of goodies... Hershey Bars, Milky Way Bars, chocolate snack cakes... then was offended and defensive when I was hurt by it.  He then lectured me that I never said I could not have chocolate and insisted that when I said it, it was for that day only and he was only trying to be nice.

So, I am the bad guy and get the guilt trip because he did not listen to what I was saying (he still insists I am wrong) and in the house are chocolate temptations that I would nibble on in a heartbeat but can't because I do not want to choke in my sleep.... but oh, how I want some.  I think what he did was cruel... he thinks that I am being unreasonable and not understanding HIS feelings.

Why the heck would someone be depressed?

Just because you cannot eat food?  Just because you cannot drink enough fluids to keep your kidneys functioning?  Just because you are in constant high levels of pain and can't even take a baby aspirin for it?  Just because you open up and talk about your losses and someone brings you and presents you with just what you crave the most and you can't touch it?

I need an attitude adjustment...

Sunday, September 25, 2011

Mood- dream state
Health- asleep

Just what kind of post does one make when they have been doing nothing but sleeping?

My friendships (all online since any friends that I had before the internet have faded away long ago) are suffering because I just do not have the energy to interact and think, it is often all I can do to post to vote for my entry in the Reader's Digest contest on facebook to try to raise Awareness of Gastroparesis by having my story published in the magazine and try to follow their posts.

I often feel lately like I have let them down majorly because I am not able to give them the support that I used to, mainly because the moment I start to post a comment to what they say my mind goes blank and all I can do it post a hug... if I remember to hit the enter before I leave that page.

I want more than anything to be able to interact and help out where I can but I just can't seem to do it lately... actually not so lately, because this has been an increasing issue over the past months.

It has gotten so bad that I will fall asleep (often with my hands on the laptop) then wake and see that it is dark and be in a panic because I do not know what day it is and if I remembered to do my daily blog post so I have to check my cell phone to see what day it is then check my blog to see when the last post was made.

This happens daily, if not a couple of times a day and I always seem to be waking from sleep in a panic that I missed something and not being able to remember what I missed.

My cell phone itself rarely needs charging anymore because I just do not get the text messages and phone calls that I used to... mainly because I would not respond for a long time (asleep and missing the texts or calls until it is too late and I do not want to wake anyone then forget that I got one) or because I would see that I missed a call and then forget that I missed a call.

Malnutrition and dehydration from Gastroparesis not only robs you of the energy to do much at all but it also robs you of your friendships as your friends believe that you are pulling away when in fact you still think of them often and try to follow their actions online but just cannot think clearly enough to interact without feeling like you are not understanding what they are saying or you are trying to reply.

If this post makes no sense, I apologize... what I wrote confuses me as well.

Saturday, September 24, 2011

Mood- so-so

Health- not so-so but simply so

Today's post is about a phrase that many with chronic illness often hear-

"You are so strong and upbeat... I don't know how you do it..."

While those saying it mean it as praise and as a positive thing it can actually be seen as a very frustrating thing because in all truth, what choice do we have?

We are 'strong' because we have zero choice in the matter and in truth what people see as being strong is in reality struggling to live and managing to make it one more day.  What is seen by others as strength is in reality us struggling for any little aspect of 'normal', of being just like everyone else.  

It does not take strength to go from Doctor to Doctor and Hospital to Hospital... to endure painful tests and procedures... to get out of bed in the morning...

What it takes is will to live and try to have a 'normal life'... it is not strength that drives us but knowing that if we want to have any life at all we have to fight for it.  The 'simple things' are not so simple for us and people see us struggle so they offer words of praise "you are so strong" but they never think about what real strength is.

Real strength is the person that knows they are weak and even when they give in and give up they still fight for that next breath.

Real strength is holding on to that last thread of hope no matter how hopeless a situation seems.

Real strength is rarely upbeat and chipper... that might be the mask worn when people are looking but in truth real strength is bone tired and aching, it is feeling helpless and worn down by life.  It is crying into your pillow when no one can hear you and staring at the ceiling or walls for long periods of time because you just do not have it in you to do anything or cannot think straight enough to remember what you were going to do in the first place.

As for being 'upbeat'... that is often for others benefit and not our own because pity is the last thing we want or need.

There comes a point in every chronic patient's life where it is hard not to cringe when they hear the words "I am so sorry you are going through that" or "I hope you get better".

First off... please do not feel pity for us or feel sorry for us... you did not cause it to happen to us so you have nothing to feel sorry for and your implied guilt makes us feel guilty that we made you feel that way.

Secondly, saying that you hope that we get better is almost like saying to someone that lost a leg "I hope it grows back".  An incurable condition is just that... incurable... there is no getting better from it.

I know... we know... that these things are only said with the best intentions and are not meant to hurt and I am not trying to lecture anyone for saying them... what I am trying to do is raise understanding so that those awkward moments can be avoided.

With this in mind I am going to post a list of things that can be said and asked (and please do ask, because one thing we want more than anything is understanding and awareness).

• Is there a cure?
• Are there treatments?
• Is it contagious? (this might sound like a strange question to ask, but it is in the back of everyone's mind and asking will open the door to learning more)
• I hope that it calms for you and you are feeling better soon. (this shows that you know that the person will not get completely well but you still hope that they will feel better)
• Where can I find out more about it? (yes yes yes, ask this!!!  we are always willing to share how to learn more)
• Are there many doctors that treat this? (you might be surprised by the answer)

When all else fails, a hug goes a long way because often people are afraid to touch us, afraid it will hurt or somehow they will be contaminated by the touch.

So... in the end just remember... we are 'strong' because we have to be and we are 'upbeat' because we try to hide the real face of that 'strength'.

Friday, September 23, 2011

Mood- tired tired tired
Health- blech

Had my appointment with the ankle/foot doctor today...

The strange thing is that while I have trouble finding a Gastrointestinal doctor that knows about Gastroparesis and treats it I have an Orthopedic Surgeon that knows about it!

After the exam on my defunct ankle she asked me how my Gastroparesis was and I told her hot the Gastroenterologist told me to eat fruit to battle my chronic dehydration and her reply was to roll her eyes and say "you are not going back there are you?"   Keep in mind that the GI doctor in question was in charge of the GI clinic at a Teaching Hospital!

On the foot front, we are going to try one last style of bracing to keep my ankle in joint while waiting for me to be healthy enough for and get medical clearance for the amputation (something that cannot and will not happen until I can take medication... and without a GI that actually knows more than a foot doctor about Gastroparesis there is no clue how long that will be).

Other health-wise it is pain pain pain and tired tired tired... slept much of the afternoon after I got back from the Doctor's office and just got up a little bit ago and ready to go back to sleep, but doubts my stomach, ankle and the rest of my body will allow that to happen any time soon.  One can hope....

*****************************************************************************

Remember to go to my entry in the Reader's Digest "Your Life" contest on facebook and vote daily... still in the top 10 but in order to increase chances of winning and having a story about Gastroparesis published in it (making Gastroparesis a household word) it needs to be higher in the standings.

Thursday, September 22, 2011

Mood- hopeful for tomorrow
Health- roller coaster

Tomorrow I go to see my ankle Dr to see what is going on with my heel...

In 1999 my first surgery (the infamous one where my BP went up in the middle of surgery, they treated it and my BP vanished completely leading to a week on a ventilator in CCU with my foot being held together with plastic wrap then another surgery a few weeks later to finish the surgery under spinal anesthesia) they cut off my heel-bone and moved it to the outside about 1/4 to 1/2 an inch and I swear that there is still a sharp ridge or shelf there, but that is not what is going on now.  

To put it plain and simple... my heel hurts.

It hurts to put pressure on the bottom of my heel and with every step I take... and probably has a lot to do with the fact that my heel takes all my weight and I do not and can not push off with my toes with every step... it is more like walking on a peg leg with my heel as the peg.  After over a decade of this happening there is probably some damage happening in the bone itself (heel spurs? micro-fractures? downright crumbling?) and I need to find out what it is before things progress to a point that it is impossible to walk at all anymore.  It is not that I do a lot of walking to begin with (I am lucky to walk 50 yards a day) but I would like the option.

It is going to be a bit of a round robin as I am sure one of the first things they will want to try is cortisone shots, but I can't have those... so they will then want to try that injection for joints that adds a layer of protection to damaged joints but the fluid they use contains eggs, and once again a no go.  

And, of course, pills for pain management are not an option for me... so this is going to be a very frustrating appointment for the Doctor I am sure and I really do not expect to have what is going on 'fixed'... I just need to know what it is and what I can do to prevent further damage.

Once again it is my Gastroparesis sticking it's nose into the business of other body parts and functions that is making treating anything so very difficult and why I am mentioning the ankle and heel issues here.

If I could take pills (they sit undigested in my stomach for so long they literally eat into the stomach lining and duodenum causing ulcers) then I would be in so much better shape health-wise and better equipped to handle every day life.  My blood pressure, thyroid, heart rate issues and more would be treated...

If I could take the liquid medications available (they are all formulated with artificial sweeteners to be diabetic friendly which is a major migraine trigger for me) then I would still have a fighting chance at things...

If I was not so severely allergic to adhesives then I could use the patches available... but in order to use the patches I have to be on high doses of Benadryl, which I can't take as a pill or as the liquid...

See where my frustration and the frustration of my doctors comes in?

My one and only visit to a GI since we lost our insurance I begged and pleaded for a J-tube so I could take medications and get fluids through that but was told I was not thin enough for them to consider that and was 'informed' that pills dissolve in the stomach and would not cause any issues... even though when I could still vomit I would throw up pills (plus a little blood) hours after taking them still in very recognizable form and have EGD proof of the damage.

So... as a result of not being able to take medications I always get the same frustrating thing from doctors when I go see them-

"What do you expect me to do since you can't take anything?" (accompanied by a condescending smile, shrug and palms up)

Guess what... I am NOT a friggin doctor and I expect them to THINK OF A WAY to FIX IT so I CAN take medicine!!!  They are the ones with the fancy degrees on the wall, yet I am the one that has to live this life...

So... anyway... tomorrow I go to see my foot doctor... 

*****************************************************************************

Reminder to please please please go to my story entry in the Reader's Digest contest on facebook and vote daily.  We desperately need awareness and better treatment options and Doctors need to learn more about this terrible condition so they start treating it properly and those like me can have hope for a better quality of life.

Wednesday, September 21, 2011

Mood- ????
Health- same old roller-coaster

Not much going on in my world... sleeping most of the time does not really bode well for a blog that is supposed to follow my daily activities unless you are all really into dream interpretation in which case I have some real doozies to share!

The hurricane damage (from Irene) has finally been patched up (nothing like waiting until the last minute) and the jungle that is the yard has been cut.  Not that I did any of this, but am just glad it is finally done.

My entry in the FaceBook Reader's Digest contest has slipped to 8th place today, which is a little disheartening but I know that I have friends voting daily and I am really surprised that I am still in the top 10 in the rankings but without about 7000 votes there is little chance of winning the whole thing although staying in the top 6 would increase my chances dramatically that it would be published.

I am really hoping that it is published, even if I do not get a dime, because the whole reason behind it is to raise awareness of Gastroparesis and other Digestive Tract Paralysis conditions and getting the story published in Reader's Digest would go a long way to making Gastroparesis a household word and with that would come a push for better treatment for all those who suffer.

Health-wise it is pretty rough here... that gallon of green tea that I have been sipping on since Saturday is still not empty so I do not have my average daily fluid intake calculated for this week yet but is laying bets that it will not be nearly enough.  I have stopped counting daily ounces and have decided to instead count weekly totals then average it out over the week so I can have a better idea of where I really stand.

Between the muscle tremors (which keep me checking the earthquake notification site to see if there has been more activity), weakness, pain and gut-busting bloating I am wore to the core lately and just cannot climb out of this hole I have fallen into.

(BTW- what does it mean when you dream that you are a cat watching a mouse hole?)

Tuesday, September 20, 2011

Mood- frustrated

Health- broken record

Today is the 100th post, 100 days in a row of posting about what is going on in my invisible life.

I am so frustrated... so depressed...

I wanted to do something so very simple... I wanted to go grocery shopping using my coupons because two different stores were running specials for the past couple of days, one tripling coupons with a face value up to a dollar and another doubling coupons with a face value up to two dollars.

I had my coupons ready... I had checked online for electronic coupons... I matched and compared sales in the stores along with loyalty card discounts and other bargains and had my list ready.

I did not get the chance to go...

My husband decided that he did not want to go first thing in the morning, and if you do not get there first thing in the morning then the items on the shelf with any coupons out there will be cleared out by the other couponers.   He woke much later and declared it was time to get ready to go, but we both know that from past experience that it would be wasted trips.

I cannot drive due to my health and voluntarily gave up my drivers license years ago so there is no way that I could go alone, so my coupons went to waste, many of them expiring in just a few days.  Savings on items that I need (things I can actually eat) are gone and if I was healthy enough to drive I could have gone alone, but dizziness and weakness took that from me years ago.

It is a sad state of facts that I get so excited about something as stupid as going grocery shopping and look so forward to it... the same way that others might look forward to going to a Broadway show or on a special trip.  

It is not that I was really healthy enough to go today... I have been so very drained lately that the thought of going was rough, but I was going to battle through it and go... and my choice was taken away.

That is the crime of having an incurable invisible illness... that your choices are ripped away one by one until you feel like a prisoner in a broken body and dependent on others and when they let you down as well it can take a lot of the battle out of you.

Monday, September 19, 2011

Mood- Bilge
Health- Scurvy

Today be speak like a Pirate Day... what a perfect day for those with Gastroparesis!

Today all of our 'arrrgs' can go unnoticed! 

We can be cranky and threaten to make people walk the plank, call people "Scurvy Dogs", threaten to Keel-Haul people left and right and if people see us nibbling on crackers we can just call it 'hard tack' and people will think we are just in the spirit of the day.

I spent the day once again in my hammock, trying to swill my grog and avoiding hard tack because I am a see sick Pirate (any food I see makes me sick).

I am so very tired of pasta... so sick of potatoes and the thought of another nutrition drink approaching my port side is enough to make me swash some buckles!

I will keep this plundering of puns short... showing a little mercy.

Sunday, September 18, 2011

Mood- iffy
Health- ouchie

Well, trying to 'eat' every other day to give my stomach a rest is not helping things... in all truth I do not want to eat when I do eat but I know that I have to get nutrients in and cutting back on solids and semi-solids to try to get more fluids in does not seem to be working.

I am open to all suggestions to try to get both fluids and nutrients in, so if you have any suggestions (other than Ensure, Boost, Carnation Instant Breakfast, Pediasure, etc) please let me know.

The brain fog has me sitting and staring at things for the most part and reading things I write over and over trying to make sure that I am making sense.

I have decided to make a gallon of my iced green tea mint tea blend and see how long it takes for me to drink it which will give me a better idea of my true average fluid intake per day.

My entire abdomen is burning and has been for weeks now... I know my ulcers have been acting up ever since I tool a tylenol a week or so ago and am wondering if it is that or something else.

I called VCU last week to see when my EGD and small bowel follow-through were scheduled for since I have not received a call telling me and was told there was no record of any tests being ordered.

It is one thing to be floundering alone trying to keep going and another when I think I am going to get some testing done to see exactly what is going on and then find out that the Dr never ordered the tests after telling me about them.

Sighs... this is why we need Awareness so very badly... this is why I entered the Reader's Digest contest and am asking everyone to please please vote daily and help my story get published in the magazine.  If my story gets published then millions upon millions of people will learn about Gastroparesis and other Digestive Tract Paralysis conditions... they will find out the symptoms and many might get a diagnosis after years or decades of searching... people like me will not get brushed off by Doctors who know nothing and could care less because the public will demand that more be known.  People like the Caldwells will not be fighting with the Department of Human Services to get their baby back when they are accused of not feeding him.... and this is AFTER he is diagnosed with Gastroparesis!!!

Please... help me... help all of those who suffer by voting for my entry daily until November 1, 2011.

I started this social experiment to try to raise awareness of Gastroparesis and other Invisible Illness and getting online every single day no matter how I feel or what the weather is doing to fight for this... please help me fight.

Saturday, September 17, 2011

Mood- blase 
Health- zombiesque 

In a pretty good energy slump lately...

Was accused today of simply being 'lazy'....

I *wish* that I had the energy to be lazy!  I wish it was a choice of not doing something instead of wanting to do anything at all but having no choice because my body just does not have the energy!

I wish that the people that see me online or meet me and hear that I am pretty much bed-bound would stop saying things like "gee, I wish I could lay around in bed all day, that must be great!"

Well, guess what... I wish I could go grocery shopping, stand at the sink and wash a few dishes, fold a basket of laundry at one time instead of having to take breaks, run errands, mow the grass, have a job, go out to parties, go to movies, stand at the stove and cook, walk to the mailbox, decide that I want to simply walk around the block... THAT must be great!

What people call "every day errands and chores" are things I would be dancing in the streets about doing if I only could!

Just imagine... being able to take a shower and feeling refreshed afterwards and not having to take a nap to recover from it!  That must be great!

Walking the 15 feet to the fridge without my heart bounding and my muscles quivering and trying to give out??? Sign me up for some of that!

Yes... I am on a rant.

Friday, September 16, 2011

Mood- cranky
Health- gutter

Between exhaustion and brain fog I am in an almost constant cranky daze these days... I can't think straight and have been having a very hard time following things and remembering what I am trying to do... *while doing it!*

I think that Jimmy Buffet had a great idea... I need some "Mental Floss"!

Believe it or not it is all I can do these days to try to get some writing done and post on FaceBook to remind people to vote for my entry in the Reader's Digest contest.

Pretty sure it is a combination of anemia and dehydration along with other deficiencies, but no matter the cause it is making my life move in slow motion while the world blazes by at a million miles an hour leaving me lost and so very behind.

I am snarky and snappy and just cannot seem to bust out of this funk... it does not mean that I am giving up on trying to raise awareness and it does not mean that I am giving up on myself or others.  It simply means that I am struggling.

My FaceBook friends have probably noticed that I have become quieter and quieter and may be wondering if I am simply not paying attention anymore or not caring as much... but the truth is that I do still read their posts... about woes with family, battles with health and the constant struggle that is life with Digestive Tract Paralysis conditions... I read them and wish I could get the words to gather in a straight line in my head so I could make a post that might lift their spirits or offer comfort but often I am stumped after clicking to respond and just cannot get those words to come out of the tangle in my head.

My thoughts are rambling and disjointed... but my heart isn't and it is definitely with my friends and all that are battling daily with an Incurable Illness.

Thursday, September 15, 2011

Mood- unknown (fuzzy)
Health- blargh 

Having a hard time coming up with a topic for today because I spent much of the day asleep (might even be sleep typing at this very moment) and other than a few very loud cracks of thunder that woke Loki and I that is just about it.

I could post about my ongoing battle to get fluids in, still averaging around 20 ounces a day...

I could post about having to give up chocolate (I am wearing mourning garb on that one) because it has consistently causing my GERD to act up and I am getting tired of having aspiration issues, especially in my sleep, but that is just too darn depressing.

It could be about another molar breaking from malnutrition and damage from years and years of acid damage (even though I have lost the ability to vomit I did vomit for years and that damage does not go away after it happens).

But instead I think I will post on the most important topic of the day... one vital for sanity for all mankind and that can be life altering... maybe even world changing! 

It is an idea that could very well save marriages around the world from divorce!

It is a finger-printing kit that can be used at home so everyone can find out instantly just who was the last one to touch the TV remote, keys, glasses or that empty carton of milk in the fridge!

How many times have you been in a fight with your significant other because an item is 'missing', a carton is empty in the fridge or the ice tray is barren and dry as a desert in the freezer?

The battle lines are drawn when both sides insist that "you were the last one to touch it!"

In the case of missing items, even when they are 'found' there is still suspicion on both sides that the other really was the last one to touch it and commandments brought from high that in the future said item will always be kept in one specific spot.  (The next battle is that the other person left the item in a different spot, starting the "see, no wonder it keeps getting lost when you leave it lying around just anywhere" war.)

This handy dandy finger-printing kit could be whipped out and the most recent prints discovered, ending the battle swiftly... unless the battle of "you did it wrong, because I know I was not the last one to touch it" begins... (hey, not all treaties last forever)

The only flaw in this plan is that your sneaky significant other could start wiping down things to remove their fingerprints from them... they are crafty that way!

Oh, and by the way.... I found the remote for the bedroom TV today after it had been missing for over a week.  It was right there in the open in a spot that I have looked at over and over... almost as if... someone had placed it there just before I found it.... hmm...

*****************************************************************************

Reminder to please vote daily on my submission in the Reader's Digest "Your Life" contest on Facebook.  If I get published it will mean a huge boost of Awareness worldwide because my story of living with Gastroparesis will be published in Reader's Digest!  

You can vote daily (please do, the more votes the better) by clicking here  and after voting please share with your friends to also vote.

Thank-you!

*****************************************************************************