Wednesday, August 31, 2011

Mood- middling
Health- middling

Today was one of resting (gee, what a shocker, right?) and trying to rebuild my energy.  In other words I got nothing accomplished.

It is hard not to be depressed, but I have decided that I have wallowed long enough and it is time to start to find things that will help me cheer up again and start working hard at Awareness once more.

This means that I have to start accepting my limitations and listening to my body better.

As a start I did a little experiment.

I 'Googled' my symptoms (what happens when I stand for more than a few minutes, exercise intolerance and heat intolerance plus the fact that the only place on my body that sweats anymore is my face) and it kept going to pages about Heat Exhaustion and Heat Stroke so I took my temperature then stood up for a few minutes and took my temperature again.  Before standing my temperature was 99.2... after standing for a few minutes my heart started pounding and I felt incredibly weak so I took my temperature again and it was 101.9!  it had climbed almost two points just from standing.

To double check my findings I took my temperature before brushing my teeth and after (99.6 to 102.4) and after sitting and brushing my hair (98.9 to 100.9).  These are pretty consistent results and confirm my thought that somehow I am not regulating my body temperature at all and am in fact repeatedly going into Heat Exhaustion!

What is causing this to happen, I am not sure... it could be Autonomic Neuropathy (something that was suspected and mentioned as something a Dr was sure I had but never was tested for because I lost my insurance) or it could be due to my level of dehydration, a combination of the two or even something completely unknown.

All I know is that I now have an even more limited world because the things I used to just push through (and rest a few minutes then push more on) I have to stop doing because this is just not something I can mess with, especially since I have no access to Medical care I can trust.

When this happens my Gastroparesis also acts up because the dizziness makes the nausea far worse than normal and if I still had the ability to vomit I would.

It is hard to impose still more restrictions on my life... I cannot tolerate any heat at all, the simple act of walking (with my cane) or standing at the sink sends me into Heat Exhaustion as does sitting and brushing my hair.  I have to be kept in an environment of between 68-70 degrees and though I used to absolutely LOVE cold weather (I have not owned a new winter coat in years because I loved the feeling of the cold air) I noticed last winter that I could not stand anything under 65 degrees.

It drives my husband mad that I need the room cold enough yet have to use a blanket to stay warm enough... drives me mad as well.

I want my life back... but I will strive to make the life I have worth something.

Tuesday, August 30, 2011

Mood- cranky
Health- questionable


I am so very tired and I still have so much to do to clean up after Hurricane Irene...

The leaves and small branches in the yard still have to be raked and bagged, the boarded up windows have to have the wood removed, numbered and stored, damaged branches on bushes and trees have to be cut back and sealed and the frozen foods that are taking up room in my in-laws freezer have to be brought home and re-stacked.

Today all I got done was getting the fridge and freezer scrubbed clean and ready to be refilled, and that only happened after a fight with my husband who wanted to 'wait until later' (something he just about chants, 'later' meaning 'never').  All day yesterday was 'waiting until later' on getting anything done so nothing got done.

I ended up doing the fridge and freezer alone as he watched a movie then came to tell me I was 'doing it wrong' with the required results... I told him to hush.

Tomorrow I will go outside to start the yard work... something I really cannot and should not do because of my health but if I don't do it things will never get done... sigh.  I have no clue how I am going to get those boards off the windows... I really can't use a ladder, but I have no choice.  The storm was Saturday and this is Tuesday... it is past time for them to come down already!  There is roof-line damage that needs to be repaired that he will 'get to later' that also cannot wait until this fictional 'later'!

His excuse for waiting on everything?  

"My stomach does not feel good..."

Seriously???  I live with an incurable stomach condition and my stomach NEVER feels good but things HAVE to get done and I still manage to do what I can when I can.

I am cranky... I am exhausted... yet I still managed to do way more than my body could handle in scrubbing the fridge from top to bottom today and he, who can tolerate going outside and walking and raking and climbing ladders could only sit in front of the TV and watch movies all day?

Yep... I am cranky... but still...

Monday, August 29, 2011

Mood- improved
Health- should improve

I am happily typing this from my wonderful lumpy bed in my wonderful Air Conditioned air under a working ceiling fan with lights... my power came back on about 2 and a half hours ago!

53 hours without power when you cannot control your own body temperature is a huge challenge and my poor Minivan ran nonstop most of that time as I sat in the passenger seat with Loki (my dog) and watched the world outside the window.

It just about drove me nuts to just sit there, because there is so much I have to do online that I cannot do if I can't use my laptop... G-PACT's Awareness Week ended as I sat through Hurricane Irene and I was unable to do anything to help end it with a bang.  The Caldwells are still fighting hard for their son and I was unable to do any searches trying to help them find solutions... my online stores have products that need to be listed... I have to promote my story I entered in the Reader's Digest contest to help raise Awareness of Digestive Tract Paralysis conditions worldwide and I lost 53 hours of productivity.  ARGH!!!

I will be hopping back on the horse and charging back into the fray in the morning after a good night's sleep (the passenger seat of a minivan is not a good place for someone wit heart conditions and leg issues to sleep, I woke with tree stumps where legs should be.)

My dehydration is bad (heat plus stress, sighs) but I am going to fight going back to the ER when it will really do no good it is not going to help in the long run and just cost money I don't have.

I can say that I have some of the best friends in the world... I was able to use my phone to connect to FaceBook to update my friends most of the time and they were constantly sending me encouraging notes and lifting my spirits.  This would have been a much harder ordeal without them.

Sunday, August 28, 2011

Mood- bored yet ???
Health- melting hot and ugh

I am typing to you today from the front seat of my mini-van because we do not have power after Hurricane Irene and the van has a power adapter and most importantly... it has AC!

The storm was long, noisy and, after the first six hours of repetitious wind and rain... boring and hot.

We got little damage, just lost part of our cornice under our roof, but it is the aftermath that is causing me issues now.

I have extreme heat intolerance... mainly because I cannot regulate my body temperature, and within fifteen minutes of losing power the house started heating up gradually and so did I.  I do not sweat... or rather I should say that most of me does not sweat because my face will pour sweat while my arms, legs, torso and back stay powder dry.  This means that my temperature rises rather fast as I swiftly go into heat exhaustion and dash towards heat stroke with my temperature rising to 104+ and my heart doing the cha-cha.

I have ways to battle this, like using alcohol based hand sanitizer or alcohol gel on my arms, legs and neck and wiping down frequently with baby wipes to simulate the cooling effects of sweat... but when I sleep I cannot do this so I wake in pretty bad shape.

I have spent the day in my mini-van with the engine running and the AC on and can only hope that the power company was not giving false hopes and I really will have my power back by 11pm tonight.

I have been using my phone to keep connected online on facebook (my local news posts information on there, as well as my friends) and I have seen many posts on my local news facebook pages from people with medical conditions that need their AC and are trying to find out how to contact the electric company to let them know that someone at their address has a medical condition and they need to be a priority.

I have posted back to them reminding them that there are 1.2 million homes in Virginia and North Carolina without power served by Dominion Virginia Power and out of that number probably 50,000 are people with medical conditions that need to be a priority spread throughout the region and in times of Natural Disaster customers with Medical Needs should realize that they will not get faster service.  I shared my cooling tips (including using ice packs on the back of necks, knees and armpits and sitting in the car with the AC running)) and reminded them that if that does not help they might be better off going to the Hospital.

I know that this is not what the wanted to hear but this is a reality in the face of such a huge power outage.

It takes patience and proper planning for all contingencies to make it through things with the best possible outcome... that and a snarky sense of humor! :~)

Saturday, August 27, 2011

Mood- ????

Health- ????

Due to the imminent of Hurricane Irene I am posting my daily blog very early (it is 12:40am) to make sure that I have my Saturday posting in and do not miss a day since I doubt that I will be able to make a blog posting during the storm.

I will edit this post after the storm has passed with the events of the day, but to assure my pledge of a daily post I have taken this step...

Stay tuned for "Gastroparesis, a storm raging in the belly and Irene, a storm raging outside" information as soon as I am able to get a connection!


**After Date Edit**
Mood was- exhausted
Health was- ditto


I ended up having power until about 4pm on Saturday but with the storm connection to the Internet was sketchy at best and I am glad that I took the precaution of posting early.


It was a noisy long storm... not horrible as far as damage goes but just so big that damage was inevitable up and down the East Coast of the US and so many were impacted that this will be a storm to remember.


Once we lost power it started getting hot (tropical systems are called tropical for a reason, they are warm and humid) and with the heat came a fever that I battled for the next two days in any way I could.


I suffer from heat stroke extremely easily because I cannot sweat anywhere but my face and that means my body cannot cool itself, so I was pretty miserable before the storm passed and I could head outside to the minivan and sit once again in the AC.  The only problem is that the minivan does not have a bathroom so when I had to 'go' I had to walk from the van to the house and down to the bathroom in ever increasing heat and by the time I would get back to the van I would be in heat exhaustion.  All of this added to dehydration and I kept forcing fluids as much as I can, but there was a point that I had not urinated for 12 hours and was starting to get worried... but, even though it is dark, I am making urine again so I think I squeaked through without permanent harm.

Friday, August 26, 2011

Mood- frustrated
Health- drained to the last drop

Today was my appointment with my new GI... I was already upset that they switched my appointment from next Friday to today, when I desperately needed to prepare for Hurricane Irene and it only got worse when the GI decided to inform me that "we do not treat Gastroparesis... there is only one drug to treat it, Domperidone, but it is not available in the US".  

After I picked my jaw up off the floor, I filled him in on the other ways it is treated and explained that I am not able to get liquids in, or to get them to leave my stomach (I average only 20 ounces a day) and my dehydration is getting worse and worse and I wanted and needed at least an NJ-tube (the feeding tube that goes through the nose and into the small intestine) so I could get more fluids into my body and medications past my stomach.

I was then informed that "nobody puts those tubes in unless you are at a severely low Body Mass Index"... and despite the fact that I lost 14 pounds in the past week I am overweight and did not need a tube.

He then went on to say that he wanted me to stop TUMS and take Zantac... I informed him (for the third time in the appointment) that I cannot take pills.  Pills... all pills... eat away at my stomach lining and lead to massive GI bleeding.  He then informed me that Zantac would dissolve and would not do that.  I told him it had in the past.... but, I am expected to 'give it another try."

He looked at my most recent blood work and was concerned by my level of Iron Deficient Anemia and asked if I knew why it was that way... (hello... GI bleeding... !) but by that time I was checking out mentally and just mumbled "I don't know and I don't care".

Then I was asked "are you depressed? Depression adds to delayed gastric emptying"... 

The idiot of the day award as about to be given... "Yes, I am depressed... I have a chronic incurable condition, I am being offered OTC Zantac which I cannot take as my only choice of 'treatment', I am chronically dehydrated and it is getting more and more severe and I am told that I will not get what I need because I am fat... gee... I wonder why I am depressed?"

I was then told that I need to be treated for depression... I wonder how they are going to do that when I can't take friggin pills???? Magic Pixie Dust???

He finally decided to order a new endoscopy to check for physical blockages in my trachea and stomach, stretch my esophagus and then a upper GI follow-thru using IV contrast dye as the oral dye since I can't drink Barium (due to the artificial sweetener).  Umm... hello... I am allergic to all MRI contrast dye... but he says it will not be a problem.  (I guess they have crash carts in the MRI suite) 

Let's just say today was not a good day... and after this I got to head home and finish preparing for the friggin Hurricane and discovered that it is 'recommended by the city' that I evacuate.  

Sorry, but I can't evacuate... I am just too tired to care and do not have the money anymore to evacuate and since all hopes were dashed of getting any help for the dehydration which will eventually shut down my kidneys (my urine is the color of caramel) it is not like I have a whole heck of a lot to look forward to.

I will get over this by morning, I always bounce back... but for now I am firmly in the "giving up" stage.

Thursday, August 25, 2011

Mood- dazed
Health- exhausted 


Today was filled with Hurricane preparation...

This was not made any easier by my health (which stress only adds to) and the GI that I have waited 8 months to see calling and saying that my appointment was moved from next Friday until tomorrow meaning that instead of being able to do some prep work today and finish tomorrow the major bulk had to happen today.  I asked about rescheduling and was told the next available appointment was August of next year... sigh!

I had to go outside for some things (like trying to tie down outdoor items that could not come in and hold wood still as my husband screwed them over the windows... and hitting the stores for small propane tanks for our camp stove) and since the only place on my body that sweats is my face... my temperature got very high as my heart raced and skipped and I turned a lovely shade of purple with my blood pressure spiking.  I only spent a few minutes at a time out in the heat but my temperature still kept climbing to 104 and I would have to go in and cool down until it was 100 then head back out.

Add to this that all day long I kept getting one ocular migraine after another (they are painless but I go blind for 20-60 minutes each time it happens) and my stomach was churning and roiling like a vat of lava... let's just say I was uncomfortable.

Hurricane Irene is predicted to have a major impact where I live as a CAT 2 hurricane and normally I would be scared, but I am just too damn tired to be scared and am instead almost giddy from the combined stress and physical aspects.  I will probably end up sleeping through the whole thing... (slept through all of Hurricane Isabel for the exact same reason)

I am going to do my best to get my blog in on Saturday and Sunday, it is expected to hit Saturday afternoon so I will be putting that blog in early in the morning and Sunday I will hopefully have signal to my air-card to be able to post a blog.  I made this challenge for myself and I intend to keep it!

Wednesday, August 24, 2011

Mood- very sad
Health- reactive

     Today I learned that a friend I made on Facebook, a woman that I have never met in person, a woman in Perth City, Western Australia, lost her battle with Gastroparesis on Friday, August 19, 2011.

     Jules was a Mother and a Wife, only 44 years old and she kept fighting for her kids, but her poor body just could not fight any longer.

     She was a Beautiful woman inside and out, always ready with a smile and a joke no matter how bad she was feeling herself... she loved openly and freely and was loved by so many people around the world.

     Last Christmas she was in the Hospital and could not send out Christmas cards in a large exchange going on but loved all the cards she got and was so excited for this year, she could not wait to send out cards... and I have decided that all cards I send out this year I will sign her name to as well.  She will send out 'Crissy" cards (as she called them) and when people ask me "who is Jules?" I will tell them about her and about the horrible condition we share that stole her like a thief from us.

     This is why I am fighting so hard for Awareness and doing this daily blog no matter how I feel... because we need Awareness so badly.  We need better treatments and a cure...

     We are saying too many hard 'goodbyes'... earlier this year we said goodbye to Roxanne, a beautiful teenager who became septic from her TPN (IV Nutrition) line, a line she had to have for nutrients and to survive... but can and does cause infections.

     Then you look at the Caldwells... where their son, their precious 2 year old son, has been ripped from their arms because of a lack of awareness of his health condition by the Mississippi Department of Human Services and are battling for their lives to bring their family back together.

     These are real people... they are people who laugh, cry, sing and die... they should not be invisible, but they are.

Tuesday, August 23, 2011

Mood- all shook up

Health- icky

Well, today we had an Earthquake...

I am serious, there was a 5.8 magnitude earthquake in Virginia, and I live about 95 miles from the epicenter, but this was a strange little quake because it was felt as far north as New York City and as far south as Georgia.

I was sitting on my bed and felt trembling... 'just my low magnesium shakes' I thought, then it got stronger and I noticed that I was not the only thing moving!  Everything was moving!

These things just do not happen in Virginia and they are saying this it is the strongest Earthquake in the State's history, a "100 year Quake".

It was fun while it lasted, but I have a Hurricane to prepare for (the latest track has it passing right overhead) and a Wildfire to breathe through... hmm... do I see a trend?

Other than that happy happy joy joy stuff I have some exciting news... the Facebook page for the Caldwell Family is growing and you can check it out here.  There is a letter writing and e-mail writing blitz that is about to start to help the family, so please go to the page and like it so you can be kept up to date on the latest happenings.

I am also happy to say that Reader's Digest fixed a bug and you can once again vote once a day on my entry in their contest.  I am trying to win because if I do my story will be published in Reader's Digest, and my story is about living with Gastroparesis, so it will have a huge impact on Awareness worldwide!  I could care less about the money prize (in truth it will cause some major headaches, because it will make me lose my VCC coverage and I still will not have insurance so I will actually be in a worse situation) but the chance to raise Awareness is just too big to pass up.

Also, the online Awareness Week for Digestive Tract Paralysis sponsored by G-PACT is still going on as part of their celebrations in celebrating their 10 year anniversary as a Legal non-Profit and I am very involved in that.

Tired is a small word to describe just how big my exhaustion is right now with so much going on, but I can sleep when it is all done and I would rather be tired and making a difference than rested and doing nothing. :~)

It will probably be an early night tonight for me, but tomorrow is another day and another fight... and I am going to be ready!

Monday, August 22, 2011

Mood- quasi-weird
Health- SHDD (Same Health Different Day)

Today while talking with my Mother on the phone I breached the subject of my getting an NJ (Nasaljejunal) tube or a J-tube (jejunal) in the near future to combat my increasing issues with getting fluids in.

A Nasojejunal tube is a flexible tube that goes in through the nostril and down the throat, through the stomach and into the Jejunum or high up in the Small Intestine.  This tube is used to supply fluids, nutrients and medications directly to the Small Intestine, completely bypassing the Stomach. 

A J-Tube is a flexible tube that is placed through the abdominal wall into the Jejunum.  This one does not go through the nose but instead via an EGD (upper endoscopic scope) where they sedate you then pass a tube down your throat and into your stomach then feed it into the Jejunum where a light on the end is pressed to the Jejunum wall against towards your skin.  The surgeon then makes an incision and feeds the feeding tube in, tacking that loop of intestine to the abdominal wall and sewing the tube in place.

My Mother was a bit horrified but understands the need for something to be done and my increasing need for fluids and the medication for my heart conditions.

My only worry is that the Gastroenterology Physician I see on the second of September might not have a working knowledge of Gastric Motility disorders and I might have a very hard uphill battle in getting anything done. 

It is not like I can easily switch to a different doctor... it took 9 months to be seen by this doctor and since I am uninsured and seeing this doctor through the VCC program this is pretty much it.

I will be going armed with information and websites and can only hope that it is a good visit.

In other areas of my life, there is a Hurricane out there that seems to me eyeing my house with interest and I am afraid that the upcoming weekend is going to be a bad one... I hope not but so far the forecast models are not in my favor... we will see.

Sunday, August 21, 2011

Mood- zombie
Health- exhausted

I was up until the no longer wee hours of the morning thanks to 'Cletus', my ever-present large septated ovarian cyst who decided that stabbing me in the side was the thing to do last night and awoken after just two hours of sleep by a phone call, so I am pretty pooped.

Awareness week is going along well for G-PACT on Facebook with many activities coming up, you can check it all out on their Facebook page and see what is in store for the rest of the week.

I am still entered in the Reader's Digest "Your Life" contest and am holding on in the top 20 at this time.  My entry is about my life with Gastroparesis and if I were to win (or be one of the winners) my story would be published in Reader's Digest which would go a very long way in raising Gastroparesis and other Digestive Tract Paralysis conditions worldwide, because Reader's Digest is such a huge publication.  You can click here to see my submission and vote on it.  The voting goes until November 1, 2011 and you can vote once a day, so please read what I have written and vote.

Other than all of that... I am just dragging majorly today... Cletus is having a barn dance in my lower abdomen, my dehydration is as bad as ever, stomach on strike and body screaming for sleep that will not come.  I know I said that my mood was Zombie, but right now I envy them for their energy levels!

Oh... I also want to give a shout-out to another blog that you might want to drop in on this week, the Belly Press is G-PACT's blog and all this week through August 28th guest bloggers will be posting (including yours truly) about their lives with Gastroparesis, Chronic Intestinal Pseudo-Obstruction and other Digestive Tract Paralysis conditions so stop on in and have a read. :~)

Saturday, August 20, 2011

Mood- questionable
Health- an issue

Well, today is day two of G-PACT.ORG's Second Annual Digestive Tract Paralysis Awareness Week and people are posting away on Facebook about Gastroparesis, Chronic Intestinal Pseudo-Obstruction, Tube Feeding, IV Nutrition and more.

It is a hard road to Awareness and it can seem like you are treading water in oatmeal trying to get the word out but every once in a while there is a spark of hope that more people are getting the word and spreading it and that makes it all worth while.

On the home-front, I was supposed to attend a Mini Family Reunion for my Mother-in-Laws side of the family today, but there was just no way I was going to be able to attend so my husband went alone... and it is a good thing he did because it was not being held in a home but instead in a Community Room and from what I was told there was not a single thing there I could have eaten or drank.  Even the rolls provided for the pork and chicken BBQ were whole wheat to be 'healthier'.  Needless to say, had I gone I would have been approached constantly and asked when I was going to eat, if I was going to eat and why I was not eating and I would have ended up spending my time having to explain why, defend not trying and avoiding helpful hints on what to eat.

And this, my dear readers, is why I, like many of those suffering from Digestive Tract Paralysis, avoid such gatherings.  We cannot simply go and enjoy ourselves but must instead be on guard or be the object of pity... sounds like fun, right?

Instead I stayed home and hung out with my number one dog, Loki.  (He is my only dog, but he still prefers "Number one cutest dog with softest fur in the whole world who allows Mom to use 'his' pillow".)

Friday, August 19, 2011

Mood- dazed
Health- poked prodded and poked again

Adventures in the Emergency Room... or as those with Invisible Illness know it, visiting the Second Home!

Well, with my urine the color of aged apple cider and two weeks until I could see my GI I had one choice... a trip to the ER for an IV of saline to help me hold on just a little longer.

I was supposed to go yesterday, but I fell asleep and my husband could not wake me so he let me sleep and by the time I woke I had just 3 minutes until midnight to get yesterday's blog done (explaining the very short blog entry) and my husband was asleep and he stays groggy when woken from a sleep... not a good person to do the driving.

So, we went today... and I met (or witnessed) some interesting people in the ER waiting room.  I had plenty of time for people watching and chatting (was in the waiting room for over 3 hours since they were so busy).

Person number one- the book snob.

I had my husband stop across the street at a discount store and spent a whole $1.25 on a book so I would have something new to read to pass the time (if I could concentrate and just in case of an admission).  I have a tried and true way of keeping from getting admitted... prepare to be admitted and it will not happen so the purchase was necessary to make sure that I could go home.

I was sitting there with my book open but not reading it (the words were swimming) and a woman a few seats away decided to tell me the names of all of the Authors that I should be reading instead of the cheap romance novel I had in my hand.  She reeled off names I know well and compared writers and writing styles with great animation and conviction, then told me how to get books from the Library (yes, I know how to do that) and seemed insistent that I read from her pool of Authors.  It was quite nice when she was called back.

Person two- Happy Harry the Hippie.

He walked (or rather staggered) in with the assistance of Paramedics and when seated raised both hands over his head, fingers locked in a Nixon style Victory sign.  He was obviously an original Hippie (maybe even wearing the same clothes he did then) and drunk as a skunk on a Saturday night... at one on a Friday afternoon!  His story (which he shared with the room) was that he was riding his bicycle down the road and next thing he knew he was in the ditch and there were fire trucks and police and ambulances all over the place.  He had no clue how he ended up in the ditch.

These were my memorable people of the day.

Another memorable thing is that my past work at raising Awareness at this ER has paid off in spades (to a point)... because not one person asked me "what is Gastroparesis?".  They knew exactly what to do for me once I got back... with a few tiny exceptions.

I made it very plain that I needed Benedryl the moment the IV was put in because I am allergic to adhesives, so the tape would cause an immediate reaction... but it took 30 minutes before I got the Benedryl and by then my arm was red and itching like mad.

The second snafu was that they just did not grasp that it is not nausea that is preventing my getting liquids in but the fact that liquids are just not getting out of my stomach when I drink, so getting hydrated by drinking is a major issue.  I say this because part of my instructions for going home was to use the Phenegren suppositories for nausea so I could drink and eat more without nausea interfering.  That and to 'come back if it does not improve... sigh

Still, I consider today a provisional win... they know Gastroparesis now and for those that come after me this means that they will be met with a better responsive team who will not try to talk them out of their condition but will instead treat them.

Thursday, August 18, 2011

Mood- frantic
Health- rough

I was in a frantic race to get this in before midnight so a very very quick one... will get more in tomorrow!!!

Wednesday, August 17, 2011

Mood- drained
Health- ditto

Today I ventured forth from my bed and more importantly, my home, for the first time in a long time and the long hours leading up to my setting forth was filled with frustration and tears as every single chore I had to complete beforehand buried me in exhaustion.

Why should something so simple as  taking a shower, washing my hair, brushing my teeth and getting dressed sap every fiber of my being so hard?

By the time I was sitting in the small meeting room at my Lawyer's office waiting for the meeting to start all I could do was lay my head on the quartz tabletop and try to stay awake even though my body was screaming in pain.

Through the meeting I kept shifting and fidgeting to be comfortable while trying to seem awake and with it and as we were leaving my husband wanted to chat in the hallway and I wanted to get... to... the... van...

My day is over... and I think I have used my spoons for the entire month... my legs are swollen (toes solid red burning hot sausages stuck to my feet with branding irons)... my stomach is totally not speaking to me... my lower abdomen is clamped down in a full out temper tantrum... my heart is having major mood swings and the rest of me refuses to take sides.  

There were too bright spots-

1- I educated my Lawyer a little about Gastroparesis and he is going to look at my website and others I suggested so he can know more about me (and in turn will learn more about others like me)

2- No one said "But you don't look sick" (then again, I had the complexion of over-cooked oatmeal and the vacant expression of a block of cheese)

Tomorrow I might have something stimulating and thought provoking to say... tonight I am just trying to get through typing this and have it somewhat legible. 

Tuesday, August 16, 2011

Mood- delusional optimistic 
Health- down but not out


Today I am trying yet another way to raise Awareness of Gastroparesis and other Digestive Tract Paralysis conditions...

I have entered a contest sponsored by Reader's Digest called "Your Life" on FaceBook where they ask their readers to submit in 150 words or less the story of your life and I entered with my story of living with Gastroparesis and battling to raise awareness from my bed.

You can see my entry and vote on it at by clicking here 

Basically, the contest runs from Midnight August 16, 2011 until November 1, 2011 when the top 100 by votes will be judged by a panel and a Grand Prize Winner chosen as well as 10 runners up and one "popular vote" winner.

The Grand Prize Winner will have their story published in Reader's Digest and I entered because this is a great way to get Awareness in a major publication.  I could care less about any cash prizes... yes, the cash would definitely come in handy since my husband is unemployed and our only income is his unemployment check, but that is not why I entered and am asking people to vote.

I desperately want to raise awareness... it is ridiculous that a condition that affects 1 out of every 25 people is virtually unknown, even in the medical field, and I would do anything to bring positive Awareness to it!

Yesterday was hard... I ate nothing at all... I drank nothing at all... I knew I didn't eat, but did not realize I had nothing to drink until 11 am when I looked at my drink bottle and realized that it still held Sunday night's beverage.

Today is hard, because I am trying to squeeze fluids in while my body protests heartily at the invasion of fluid to my stomach.  It is sitting there feeling like an ice block in my stomach and piled up my throat, taunting me because I have no gag reflex so any wrong move and I will be choking as it slips down my trachea into my lungs. (The absence of a gag reflex goes hand in hand with being unable to vomit)

I have an appointment with my lawyer tomorrow, which means that I have to start preparing for it today if I want to have any energy at all during the appointment and be able to follow what he says... and I am already out of 'spoons' today and the last thing I want to do is wash my hair so I don't have to tomorrow.   Showering and washing my hair at the same time is just not possible... I have to choose one or the other and schedule it all out very carefully.  

7:30pm- make sure I have any needed papers

8pm- wash hair and wrap it in a towel

9pm- after I get my breath back and my heart rate calms remove towel and start to comb hair

10pm- finish combing hair

SLEEP

8am- wake up

9am- take shower

9:30am- rest and get heart rate and blood pressure back under control

10:30am- brush teeth then rest

11am- comb hair then rest

12 noon- get half dressed then rest

12:30- finish dressing and rest

1pm- put on shoes then rest

1:30pm- go out to the car for the drive there... take comb so I can comb my hair again when we get there

2:30pm- appointment

4pm- get home and lay on bed whimpering

5pm- change clothes then rest

6pm- try to blog before passing out

Yes... that is my timeline for tonight and tomorrow and yes, it takes me that long to prepare for something as simple as going to an appointment.  Most people would think that for something like this they might have to start getting ready about an hour before they have to leave, but if I tried to do that I would never make it or if I did, I would be so completely drained and out of it that I would remember nothing at all and would lose any bit of productivity I have.

Right now... I have to rest before checking my papers... my abdomen is in agony from the 12 ounces I have taken in today and if I want to keep on schedule I have to start now.

Monday, August 15, 2011

Mood- frustrated and depressed
Health- icky

Every time I think my husband fully gets what is going on with me health-wise he does or says something that lets me know that he really does not get it... sigh

One of our biggest battles... the most common reason for fights is "What do you want for dinner?"

Honestly?  He wants me to choose?

Fine, I choose nothing... yet when I say that he storms off in a huff.

I never have an appetite... and though I crave things I miss everything I eat makes me ill so the truth is I do not "want" anything!  I have said this over and over again but he just does not get it.

His reply is always "well, what would make your stomach less sick?"

That is like asking someone "which would you prefer? to be shot or stabbed?  You have to choose one, so hurry up and choose!" when you don't want either.

It happens almost every day... over and over...

"What do you want for dinner?" him

"I don't care, you choose." me

"No, you choose, I can eat anything and it needs to be something that settles on your stomach." him

"Nothing settles on my stomach!" me

"Well, think about it, choose something that will sit better than others." him

Five minutes pass...

"Have you chosen?" him

"No..." me

"Fine, I will choose... McDonalds!" him

"I can't eat McDonalds..." me

"See, I choose and you say you can't eat it..." stomps off

"Find yourself something to eat..." me

"I am not getting something to eat if you don't" him

GUILT TRIP

"Fine then, McDonalds..." me

"What do you want?" him

"I don't know, I am trying to think of what I can have from there" me

"Then why did you choose it?" him

 "Because you did" me

"Well, make up your mind, I am getting a headache and need to eat..." him, stomping off again

"Just fix yourself something to eat..." me calling out

"PICK SOMETHING!" him from another room

"Forget it, I am not hungry and don't want to eat" me

Silence... I am now the 'bad guy' because I could not choose what to eat so now he will not eat and it is all my fault.

Then-

"what are you doing?" him

"blogging" me

"Have you decided yet?" him

"I am blogging and need to concentrate" me

"Fine!... All I did was ask what you wanted to eat... so sorry I bothered you... you could choose, you know... it is a lot easier for you... you know what sits well on your stomach.... any time I choose you say 'no' so you choose... why does this have to be such a hassle....." him

"trying to concentrate here" me

"well excuuuse me" he stomps off again

If my hair was not already falling out due to malnutrition I would be pulling it out nightly because this is almost a daily occurrence.

His favorite time to come ask me anything is when I am working on my blog... and though I have explained to him that it is hard for me to concentrate and when he sees me working on it I need to be left alone he will have a million questions to ask... or have to come in and play with Loki (my service dog) who gets defensive because he knows that I am not feeling well and am getting frustrated so he starts snarling, which my husband ignores... pushing the dog again and again.  I then have to stop blogging, tell him to leave the dog alone... then he gets defensive and tells me that he is just playing with the dog and ignores me... and the growling and bouncing around on the bed continues until I have to flat out tell him to leave the dog alone and get out while pointing at the door... and get the "fine... excuuuuse me" bit again... sigh. My concentration is shot and I often have to erase my blog and start all over again.

Just having a very frustrating day... tired of feeling rotten all the time, tired of being the 'bad guy' because I am tired and can't think straight half the time and can't decide what to eat when in truth I do not want to eat and he will not eat unless I do so it is my fault that he gets a headache...

I am just tired...

Sunday, August 14, 2011

Mood- dragging
Health- flagging

After pushing pushing pushing myself to try to keep active (as active as I can be from bed)  my body is pushing back and telling me that I have to either start listening to it when it says 'rest' or it will take matters out of my hands and do what it wants anyway.

What does this mean?

It means being QWERTY faced, people... in other words you fall asleep on the computer rather than at it and wake with an imprint of the keyboard on your face!

My body has been dropping small 'hints' over the past week... muscle tremors that shake the whole bed yet I cannot tell what muscles are jumping... Dumping Syndrome deciding to flare when I take one sip too many of a drink (which can mean more than one sip at a time)... Alchalasia (a swallowing disorder) where liquids 'lock' feeling like a cue ball stuck just above the sternum (painful)... brain fog... increased nausea and more.

Living with an Invisible Illness means living with a condition or a range of conditions that, while you look 'normal' to the observer, sap every last bit of energy you have doing the simplest tasks.  It means being called 'lazy', 'attention seeking', 'over-sensitive' and more when you try to explain that you just are not up to doing something.

I am lucky that my Husband understands what I am going through and, since he has witnessed the years of Doctor's appointments, tests and frustration, believes me.  

I am lucky that I have a huge online support group that I can lean on for understanding when the world doesn't at http://www.facebook.com/groups/GPACT/ 

Yep, even with everything going on I still feel lucky :)