Sunday, July 31, 2011

Mood- upbeat
Health- downright beat

Today went better than expected... while I was continually asked as we awaited the dinner "can you eat this?" and "can you eat that?" nothing was pushed on me.  As a matter of fact when I sat down at the table I was presented with an ornate glass with Berry Pediasure in it and nothing else!

I was thrilled, because I had forgotten my own Pediasure at home (I was exhausted after getting ready to go) and was planning on simply sipping on unsweetened green tea at the table, but my Mother-in-Law had bought Pediasure just for me and while I was not able to enjoy the spread of fried chicken, coleslaw, pasta salad with fresh veggies and green beans I did have something I could sip and enjoy.

That said, I am still exhausted... we (my husband and I) estimate that I walked (with use of my forearm crutch) around 150 yards and my legs are trembling and cramping bad and every bit of energy I had is completely gone.

I will blog more tomorrow... right now I just need my rest.

Saturday, July 30, 2011

Mood- iffy

Health- drained

Today is yesterday without the phone calls... I woke for a few hours around 10am, then went back to sleep and slept until 9:30 pm and will probably be going back to sleep again in a few hours.

I am not sure if my ulcers are acting up or if it is just esophageal spasms and stomach spasms, but I have been getting very sharp pains in my chest and in a straight line across my stomach itself (just under my ribs) soon after swallowing anything non-liquid and immediately upon laying down that lasts about 5 minutes.  This is a new thing... so when I finally see the Gastrologist in September I will have to add that to my list of issues (if it continues).  I am hoping that I have not developed a bezoar, but time will tell. 

Yesterday I talked about getting a hobby, something that lets those with limited energy find a way to feel productive... today I will touch on a similar subject-- fighting the urge to justify.

One thing that those with an invisible illness has to face is having to explain over and over what they have and how it impacts their daily lives.  You end up feeling like you have to justify your feelings, your symptoms and how you manage and deal with them... you feel like you have to give 'excuses'.

"I cannot did not go to the Movies with you because the smell of popcorn makes me nauseous"

"I did not go to the game because sitting in one spot for a few hours is just too painful"

"I cannot go to the pool with you because I have to avoid sunlight due to a medication I am on"

We know that these are truths but others see these as 'excuses' and always ask 'why?', then we must explain why... and they almost always come up with how you 'could have done it if you really wanted to' right away.

"Then don't get popcorn and ignore the smells"

"Then get up and walk around or bring a pillow to sit on"

"Then sit under an umbrella"

They just cannot see how simply ignoring a scent (which is impossible), getting up and walking around and using a pillow (when walking around will be just as painful and a pillow does not prevent stiffening joints and muscles) or sitting in the shade (that will get you out of the direct sun but not out of prolonged sunlight) is just not feasible. 

You feel like you constantly have to justify your actions and decisions... you face it in inter-personal situations as well as with Doctors who do not fully understand your condition and that leads to depression and self doubt.  So you end up doing things that you know will affect you adversley simply because you either do not want to deal with the questions or have to justify your actions.  This leads to resentment on our part towards those who just do not understand our situation and adds to our isolation.

We have to learn to stand up for ourselves and not be on the defensive all the time... instead of feeling bad that we must explain our decisions and actions and 'explain' or 'justify' them we need to simply state the facts in a manner that is not placating but authoritative.  We know out limitations and our condition and we need to step up and take charge of how we manage it in our own best interests.

Friday, July 29, 2011

Mood- so-so

Health- so-so

Other than getting up for a few hours around 10am, today is pretty much a repeat of yesterday... a few phone calls and a lot of sleeping.

That is one of the aspects of having an incurable chronic illness that can bring a person down if they do not find ways to counter the affects.

It is important to have hobbies... things that both take time and engage the mind so that you feel you are contributing something and accomplishing goals. 

Things you can do include- working to raise awareness of your condition (always needed, though it can be frustrating and it takes a long time to see results), knitting, crocheting, quilting, painting, sculpting, making models and more.

Go to a craft store and wander the isles... look at all the different things available and make a list of the things you might like to try out.  Not only will you have something to occupy your time but the things you create will make wonderful gifts for family and friends and the sense of accomplishment, making something from nothing, will go a long way in lifting the depression.

I work on Gastroparesis Awareness, paint and crochet mostly... and when I am unable to work on one I am usually able to do one of the others so there is always something available for me to do.  When I finish a project I have a sense of completion from setting a goal and meeting it that always lifts my spirits.

If you are just not the 'crafty' type, consider getting into coupon clipping.  Not only can it be time consuming (and therefor fills otherwise empty days) but the challenge of matching a coupon with a sale and trying to get items for free is very empowering and can save you quite a bit of money each month.  There are many online sites that teach you how to coupon and post weekly "match-ups" of current coupons and sales at stores as well as where to find online printable coupons and more.  Those little bits of paper are actually MONEY, you may not be able to pay your bills with them, but when used carefully you can save enough to make bill paying much easier and maybe have a little more left at the end of the month.

Just remember... you have your condition and it is YOUR job to make sure that you do not let it have you.  It has impacted your life and probably has taken things away from you that you mourn the loss of, but that does not mean that you cannot find things you can still do and be proud of.

Thursday, July 28, 2011

Mood- blah
Health- repetitious

Well, today I woke at around 6pm and if it was not for this blog (and my commitment to do a daily blog) I would definitely not have pulled my laptop out today and would have instead simply rolled over and go back to sleep.

Yep, this is my day today... nausea (burning, hot and insistent), pain (abdominal, not just my stomach but the entire abdomen along with jaw, head, sinus, knee, kidney and ankle pain), exhaustion (despite 12 hours sleep) and the frustrating process of trying to make lists of things that I have to get done tomorrow and early next week.

I am the list queen... lists of lists so I can find them, lists of things to do for awareness, lists of contacts to make for that family in Mississippi to try to help them, lists of home projects, lists of possible locations for an awareness event.  Lists lists and more lists of lists...

Then I was informed that we are invited to a family dinner (invite is a mild term for this) for my Mother-in-Law's Birthday, which is the day before my Husband's Birthday which is the day before my Son's Birthday.  I have extreme dread of this 'get-together' because the last one I attended was very stressful.  I brought my own 'meal' (a Pediasure) but was told that I was going to eat instant mashed potatoes they were about to make.  I asked them not to make them (since they were making them for me and another family member with Gastroparesis who also did not want anything to eat at the time) and was lectured that they were making them and we were going to eat them and that is that. They then proceeded to mound huge spoonfuls in a bowl and seemed very upset when we both only ate a few mouthfuls. 

I have to go... it does not matter that I have not been out of the house in over a month because I do not have the strength to do anything, it does not matter that I might not be up to going that day (those with chronic illness like Gastroparesis do not know how we will feel from minute to minute let alone in a few days) I have no choice because if I do not go it will be seen as an insult.

Honestly, I do not want to go because I do not want to face another 'dinner' where I will have food forced on me and be lectured and harangued until I either eat it or simply walk out which would add a whole new level of troubles.  I am caught between protecting myself from harm and having my Husband's family upset with me and hurting their feelings by either not going or having to leave if pressed to eat (and if I have to leave my Husband will have to leave also since I do not drive).

I have tried over and over again to explain to them but they just do not 'get' it and I doubt that they ever will.  It is not that they are not compassionate, they are... it is that they just cannot grasp things that they, themselves, do not experience.

So, you see, someone that strives to raise awareness in the world can often have the hardest time simply raising it within their own family and it can be very depressing to know that no matter how much you explain or describe you are in an uphill battle and outnumbered. 

Wednesday, July 27, 2011

Mood- zoned
Health- iffy

I know that I could write about exactly what I do every day... but that would be a very boring repetition of "I got up... I stayed in bed unless I got up to go to the bathroom... I went to sleep".  Sometimes I do a few things... I may pull out the laptop and do some searches or work on my website (www.gastroparesis-awareness.com) or one of the two online stores I run (www.zazzle.com/syralia where all proceeds go to www.G-PACT.org and www.zazzle.com/bumperstickerstore that I run to try to raise money for medical treatment) and always have Facebook up in the background while doing all that.

Today I am working on things in the Bumper Sticker Store (considering I only make 40 cents for every one sold and only get a check when there is $25 in profit... umm... this is more of a hobby than something that actually makes money, lol) and finishing designs for the store I run for G-PACT.

Even though I do all of this from bed it is very tiring and I have to take frequent rests, but it gives me something to do and a way to give back.

Today has been another bad hydration day... I stopped pushing fluids so the pain is a little better but my constant companion, nausea, is still running strong.  

I heard back from the Lawyer that might take me on to get lifetime disability payments from Workman's compensation... my old Lawyer retired and right now I am trying to get everything I need done in less than a week... sighs.

The tire was fixed so we have a car again, so that is good news for today... but the budget for the US is not fixed... highs and lows.

I know that the GOP and Boehner want to cut the Affordable Care Act, saying "no one wants it" but obviously they do not speak for the tens of millions without insurance who DO want it and my biggest fear right now is that they will succeed in having it cut.  If that happens and my husband is able to find a job (still no success there, though we send out dozens of resumes a week) I will not have medical coverage and no way to get medical coverage and I am not alone in this.

Highs and lows... a roller coaster life...

Tuesday, July 26, 2011

Mood- upbeat 
Health- just plain beat

Another long day behind me... 2 ounces of fluid in me and nothing 'solid' but a twizzler that I sucked the life out of over a few hours time as I slogged along in the Internet, worked on a quick video (above) since I could not sleep last night thanks to pain and forgot more than I remembered today.

Though I am drained and dry as a husk I am happy to say it was a very successful day for the most part... I did make a video showing the signs of dehydration and took part in a meeting with G-PACT that I cannot mention at the moment but is extremely exciting. (I will await their announcements and pass them on here)

Tonight my husband was going to run to the store for something and found our car tire slashed... ouch!  We have a spare, but that was a relatively new tire and we do not have the money to replace it... another stress another thing added to my blood pressure, but after the meeting I am just too upbeat to let it beat me down right now.

I am just a little over a month out from seeing a Gastrologist for the first time in well over a year and that poor Doctor has no clue what will be coming at him, because I am going in there and begging, pleading and demanding a feeding tube so I can get the fluids I need and the medication I need and I will not take no for an answer. (Yep, I am pumped for someone so 'dumped' right now)

You have to pick your battles carefully when you have limited energy due to a chronic illness, but I know that I will be much better off when I am able to hydrate properly and can once again take my blood pressure and heart rate medications (you can see on the video just how fast and drastic my heart rate changes are) and that alone will improve my life beyond measure.

I am a fighter... I might get kicked every once in a while, but those are mere battles and I plan on winning the war!

Monday, July 25, 2011

Mood- optimistic 
Health- pessimistic 

Today has been a very long day of research online into obscure concepts about a common condition that very few know about, trying to connect with strangers and have them care about something that is not happening to them and fighting exhaustion, brain fog and the urge to curl up and sleep.

The dehydration is still winning... yesterday I managed to get in 27 ounces by the time I went to sleep at 5am and so far today I have managed 12 ounces but the nausea that I face trying to get all that fluid in coupled with the painful bloating and pain is so not worth it.

Do I live in increasing agony to try to hydrate (but not nearly enough) or do I risk my organs and brain function by scaling back on the fluids to a more comfortable level?

Today I also got my much anticipated (and awaited) notes from my last two appointments from my knee specialist that I need in order to get a disability rating done so I can try to get lifetime disability through Workman's Compensation... and the deadline is August 4th... I have no idea if I can get this done in time.

There is a big week of Awareness coming up associated with G-PACT (www.G-PACT.org) which I will be helping with and I really need the energy to put my best out there... there is the huge situation in Mississippi that I have been working on every waking moment trying to get the family help. **UPDATE** They now have top legal counsel and the court date is postponed for the moment as their new Lawyer works to gather all the information he can for them and one of the things they need is pediatric Gastroparesis/motility Specialists that are willing to chime in and either testify or write in reports.

I am so very tired... my pain level is a 8+ (out of 10) and I have no idea how long I can keep up this pace, but I am going to keep it up and I am going to keep fighting because there are people out there that need people to fight for them.

One of the biggest fighters I know is in the Hospital as I type this, she is battling to get the treatment she needs so she can get back to the fight as well... she is my inspiration and her story is amazing. (www.bluelightningjeep.blogspot.com)

Sometimes we just have to fight even when we have no energy to fight with because if we won't... who will?

Sunday, July 24, 2011

Mood- downish
Health- tired

When people tell you to be your own best advocate they are giving you some great advice, but in order to do this you have to have the tools available to you to do it.

So... I am going to point you at some tools... one online source and three books that anyone with a chronic illness should have on hand.

First, the online source-

http://labtestsonline.org/ - this website is invaluable and I recommend that anyone who has ever had a medical test get to know this site and use this site.

• You do not have to sign up to use it, they never send you any spam because you never have to enter any of your information.
• You simply type in the name of the test you are getting and it will explain to you what the test is for, how the test is done, how to prepare for the test and what the results mean.
• When you get a copy of your test results from your Doctor (and you should always get a copy of the test results for your own records) those abbreviations can be confusing and even with a high or low next to a result number you have no clue what it means.  Just type in the abbreviation and it will tell you what the test is and will tell you what a high or low result means!

Next is the first if three books you should have handy-

The Merck Manual of Medical Information (Home Edition) can help you find out more about your condition, what you should look out for, what you should avoid, associated conditions as well as has a first aide section and more.  You can find it at http://www.amazon.com/Merck-Manual-Medical-Information-Home/dp/0743477332/ref=sr_1_2?s=books&ie=UTF8&qid=1311555954&sr=1-2 .

Then there is The Pill Book-

This book lists all of the prescription medications prescribed by brand name, generic name, Type of drug, what it is prescribed for, cautions and warnings, possible side effects, Drug interactions, possible food interactions, the usual dosages, what to do for an overdose and special information.

It also has a full color picture section so you can see what the pills look like, invaluable if you use a pill box on a trip and forget which pill is which or you find a loose pill and want to identify it. It can be found at http://www.amazon.com/Pill-Book-14th-New-Revised/dp/0553593404/ref=sr_1_1?s=books&ie=UTF8&qid=1311556103&sr=1-1

Last there is The Pill Book Guide to Natural Medicines-

Extremely helpful when using supplements and homeopathic medicines.  It can be found at http://www.amazon.com/Pill-Book-Guide-Natural-Medicines/dp/0553581945/ref=sr_1_3?s=books&ie=UTF8&qid=1311556036&sr=1-3

With these three books and the website at your disposal you will be better prepared to be the best advocate for your health possible because you will be able to ask the important questions when you see your Doctor and will be able to better understand what they are testing for and why.  

Now that I have shared these books and the website, I am going to touch on the matter of keeping your own records and keeping notes at the Doctors office.

It is vital that you keep a full record of your health including dates you started showing symptoms, anything that helped the symptoms or made it worse, tests run and the results, dates things were diagnosed and how they were diagnosed and to bring a copy with you to every Doctor's appointment and trip to the Hospital or Emergency Room.  Also include a complete list of allergies, what your reaction to the item you are allergic to and when the allergy came on as well as a list of all medications you take (including over the counter and herbal) the dosage, why you take it and how long you have been taking it.

This is vital because when we are sick we forget things and forgetting an allergen could cause huge issues as can drug interactions or if you are given a medication that does what another medication you are already taking does.  

Give every Doctor a copy for your records with them (not your only copy) including ER doctors... and there is a good reason for this.

Let's say you go to the ER and a tired intern comes in and is the third person since you arrived to ask you 'what brings you in here today'... you are in pain and after saying it all twice you give a condensed version because, after all, didn't the triage nurse and the room nurse already write it all down?  As you are talking the Doctor is looking at the chart... but is he actually reading anything or is he thinking about the sick kid in bed 2, wondering where the lab results for bed 6 is, hoping that no one touches his cooling dinner in the break room, hoping his room mate does not throw out the paper.... etc.  What you are saying is background noise and he might catch a few bits here and there but chances are he will not hear all you are saying.  So, he will order the usual tests... blood count, chem 7, white blood count and wait to see what it says.

If you present him with written words and say "this is what is going on" he will have to read the words... and cannot later say that you did not mention that your stomach hurt or you were dizzy because it would be there in black and white.  He would instead read the words and ask you things about what you have written and ask what part if the worst at that moment.  You would have his attention because he would have to PAY attention to get the information he needs.

At the same time you have to take notes... have a notebook ready and write down what they say and ask for a copy of any test results they get (and yes, they have to give it to you if you ask for it).  This way when you get home you can look up the tests and what the results mean as well as the things they told you and when you follow up with your primary care Physician you can give them a copy of the results from the ER which they can compare to your other results and maybe spot a trend that they can do something about.

This will not only make you a more informed patient and a better advocate for yourself but will help your Doctor better treat you and together you will be a better team for your health.

Saturday, July 23, 2011

Mood- pouty
Health- drained

I am exhausted to the core and beyond...

What did I do today that wore me out so much?

Let me see, I woke up around 6 hours ago and since then I have done a few searches on the Internet and sent off a few e-mails... whew... who would not be exhausted to the point of tears from all that activity? (Insert sarcasm with a heavy hand here)

I am not doing so hot on my struggle to get fluids in... if you remember from my earlier posts I do not have a feeding tube or IV nutrition and everything has to be by mouth and yesterday I managed to get 27 ounces total fluids in... today I am sitting around 8 ounces and I just don't think I can get another drop in.  Add to this that even with the air conditioner going full blast it still got up to around 80 degrees in the house (compared to the high outside my house of 106) which (insert another dab of sarcasm here) helps so much when struggling with dehydration.

My husband is always fussing at me for 'over doing' things and telling me to rest when I need to rest, but if I rested when I needed rest I would never do anything but rest and there are things that need to be done.

A friend suggested soaking in the tub to try to re-hydrate a little that way, and I was going to try to do this today, but I have to put it off until tomorrow.  I just don't have it in me to get into the tub and chances are high that if I did get in the tub I would fall asleep there or would have too much trouble getting back out... so it was a sponge bath for me and soon sleep.

Yep, I am whining, cranky, tired and frustrated by all of the above... such is life.

Friday, July 22, 2011

Mood- blah

Health- bletch

Today was bone melting hot... it got up to 108 and the heat index was hovering in the 120's so there was no way I was going to step foot out of this house and it's life giving AC even though I should have headed to the ER at one point.

I am heat intolerant, meaning that I cannot handle temperatures over 70 degrees and humidity without suffering from some pretty scary reactions. First I will turn purple (not pink, not red but deep and dark), my blood pressure will soar into the hypertensive crisis range (250/150), my heart will race, stutter and slow uncontrollably and I will not sweat so my temperature will soar to dangerous levels. It does not take a long exposure for this to happen... simply getting from the door to the car is enough to trigger it and though I would have recovered by the time we got to the ER I can use (90 miles away) by the time I got from the car and into the ER itself I would be having a full reaction again and the reason I was actually going would be ignored.

I hate (and I do not use this term lightly at all) the Summer... from the first hot day of Spring to the first cool day of Fall I am a virtual prisoner even on the rare days that I feel like I have enough energy to do anything.

It does not help that I am in chronic dehydration (still struggling and often failing to get in at least 20 ounces of fluid) and entering that oven of a world beyond the door could tip me over the edge from just bad dehydration to life threatening dehydration.

What I would not give to have a 'normal' life... or even my milder days of my youth when I would suffer from the heat but could still do things and recovered so much quicker.

So many of my friends are also battling dehydration this summer... going to the ER and suffering through failed stick after failed stick as they try to establish a line to give them fluids, begging for 'ports' to be implanted so they can have access to fluids without the hours of failed jabs of the needles at scarred and collapsing veins.

I have been stubborn and pig-headed because I have been rebelling from going to the ER... I know the horror that awaits, the failed attempts to start a line... the noise... the bright lights... the uncomfortable beds and the fact that I hate beyond measure Hospitals because it never fails that they insist I take a pill (I can't) or drink barium (I can't because they do not make one that has no artificial sweeteners) or they try to force pain medication on me (I am allergic to all narcotic pain killers) and they get so fixated on trying to find a pain killer I can take (that and pumping me full of benedryl for my tape and other allergies which makes me edgy) that they simply throw their hands up and I leave with no help and a lot of bruises.

So... instead I am hibernating in the dark at least until the worst of this heat wave passes before I reconsider going to the ER (come on, you should know me well enough by now to know that I will find another excuse not to go by then... but I am open to suggestions for new innovative excuses because my old ones are getting a bit tattered, lol).

**UPDATE ON THE BLOG FROM THURSDAY, JULY 21, 2011**

I called the reporter that wrote the news story mentioned in the blog and have been able to write an e-mail to the family giving support. They go back to court on the 26th of July and need all the help they can get. I also sent the information to Nancy Grace (HLN) and called CNN's news tipline and talked to them and they are interested in covering the story and getting the word out that what the parents are being accused of causing are actually the symptoms of Gastroparesis. I have also contacted the MacArthur Justice Center at the Northwestern University School of Law and asked them to help the family (they only have a voicemail, but I left all the information I could and contact information for them and hope they can help). I will post updates on the bottom of my blogs as I hear them but encourage you to also help get the word out because THIS is the reason that Awareness is so very important.

Thursday, July 21, 2011

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Mood- angry, frustrated and sad

Health- challenged

Yesterday I found a news article from July 10, 2011 (http://beta.clarionledger.com/article/20110710/NEWS/307100001/1002/news01) telling how a young military family had their child taken away because their child has Gastroparesis (delayed gastric emptying IS Gastroparesis) because the Department of Human Services is blaming the parents for causing the symptoms OF Gastroparesis.

This is why I write this blog no matter how rotten I feel... this is why I fight so hard to try to raise awareness of Gastroparesis and other Digestive Tract Paralysis conditions... because travesties like this occur!

Ignorance of the condition has ripped a young military family apart... instead of the doctors knowing enough about the condition to help the parents properly care for their poor baby the doctor and DHS are ignorant enough to blame the parents and cause untold emotional and psychological harm.

I am furious... I am saddened and I am contacting everyone I can think of to try to help this family not only get their child returned but to also help them find the specialists they need to help them care for their child properly.

This is a very early edition of my blog because I want to reach as many people as possible and I need the help of everyone who reads this to get the word out so that things like this do not happen again.

Think this could not happen again? Think this has not happened in the past?

I am going to close out this blog with something a friend (part of the Gastroparesis support group I belong to on Facebook) said about this news story showing that it has happened and unless we take a stand and fight for awareness it will happen again-

"Outrageous! I feel sick reading this, especially since this could have happened to me and my parents. I was send to UCLA for definitive diagnosing when I was 5. We found out only a few years ago that they were also testing my mom for Munchhausen by Proxy. Obviously, my parents weren't making it up, but still they could have believed they were like they did to these parents. SO SAD!"

Wednesday, July 20, 2011

Mood- loopy

Health- spaced out and icky

I am feeling extremely loopy... out of it... spaced out and wrapped in cotton in a thick box.

In other words, weird.

I am pretty sure it is dehydration rearing it's dry as husk head... yesterday I barely managed to get 8 ounces and so far today I have managed about 3 ounces. I know I have to drink more... I know that if I don't I will crash bad soon, but it is so dang hard to get it in.

That is the hard thing about dehydration... once you are dehydrated it is that much harder to re-hydrate on your own because dehydration itself causes you to become nauseous and your body to ache, and drinking only adds to the nausea and pain so unconsciously you avoid the one that causes more pain.

I wish I felt thirsty, that would probably help... but I do not remember ever feeling thirsty... I would simply drink because my mouth was dry or because I liked the flavor of the drink. I used to be able to drink a lot more. I remember as a child having no trouble downing a 64 ounce Big Gulp... but that was then and this is now.

I am going to try to get some Popsicles and freezer pops tomorrow in the hopes that I can trickle in some fluids.

I have Pediasure (much needed to get the vitamins and minerals I desperately need) and my husband got me some bottled iced coffee to tempt in those vital ounces, but even the thought of drinking either (even though I enjoy the flavor) makes me want to weep.

Going to the ER to get re-hydrated is only a stop gap measure, one that I would have to repeat over and over... Oliver Twist begging for just a bit more and for that reason I am resisting going in to "refill my tank".

I cannot ever remember a trip to the Hospital or ER that did not involve the words "you are dehydrated" and at least two bags of saline, often with piggy back of a small bag of magnesium. Before I was diagnosed this was just an 'anomaly', another weird thing that was just how I am... after the diagnosis it is a result of Gastroparesis.

My husband used to fuss at me constantly that I needed to drink something, now not so much unless he realizes that I have not had anything to drink that day, but he rarely notices... it is just a fact of life.

I would love to experience the sensation of 'thirst' or 'hunger'... these are two things I do not remember experiencing. Oh, I get cravings... but those are things that I want but don't need and there is a difference. I would be happy as a clam to not have to ever drink or eat again because trying to remember to do so when concentration is difficult to begin with is a hassle and I would love it if forgetting did not mean dwindling health.

Ok, well, this is me today... whining about dehydration and typing away.

Tuesday, July 19, 2011

Mood- on top of the world and thankful

Health- challenged but with a happy heart

Something I have heard many times (and I know others with Gastroparesis or Chronic Intestinal Pseudo-Obstruction) is 'you are to brave/strong/amazing to go through this with such a good attitude'.

Really, though... what choice do we have?

We have two choices... we can curl up and scream at the world, cry, rant and rave and be angry that we have to go through this, but the only thing that would accomplish is living a miserable life alone because no one would want to stick around a person that acts like that.

This might not be a wonderful life, but it is the only life we have and we would much rather smile than cry, laugh than weep and fight than give up.

I will tell you who the really amazing people are... they are the people that are not affected by these conditions, who learn about it by meeting someone that has it... and who help raise awareness by learning more about it and passing it on.

I have reconnected with old friends who, upon learning what I have been diagnosed with, ask more about it and tell others... one friend found a listing on CraigsList from a sufferer and passed the information on to me so I could connect with them and tell them where to find a huge support group online that is very active (www.facebook.com/gpact) as an example.

How absolutely amazing is that??? She saw an online ad from a complete stranger and did something about it by contacting me so I could contact them.

Just today I was contacted by a very sweet woman and friend who I connected with through a game on Facebook... on the other side of the world. We were complete strangers yet through time and little posts here and there we have followed each others lives through postings even after I stopped playing the game. I have watched as she goes on trips with her family or gardens and she has watched as I post about awareness and what I go through. She has been following this blog and my postings there... and today she told me that she is going to give a talk about Gastroparesis and Digestive Tract Paralysis to help raise awareness. I cried my eyes out.

Want to know the true definition of love... the definition of amazing.... it is those who step forward and help complete strangers.

I am so very humbled... the world is full of wonderful people and I have had the privilege to 'meet' people who remind me of this.

For those with Gastroparesis and other Digestive Tract Paralysis conditions who are reading this, I want you to know that talking about it does make a difference, sharing what you go through does reach wonderful people with huge hearts.

Monday, July 18, 2011

Mood- better

Health- stagnant

If there is one thing that someone with a chronic illness is good at it is talking themselves out of going to the ER.

I can't count how many times my friends or I have that conversation with ourselves...

"Do I really need to go? Will it do any good? Should I go to the ER now or just call the Doctor in the morning? Well, it is morning and I really don't feel like calling the Doctor's office, the receptionist never gets it right and they never call back anyway, if I am not better by tonight I will just go to the ER..." and repeat...

It would be so much easier if we could just go over a list of questions and at the end add up all the ones we answered yes and the number would tell us if we needed to go to the ER or if we should wait until morning.

The problem with such a checklist is that it would place huge liability on the person that created the checklist and open them up to lawsuits, even if the person repeated over and over that the checklist is for informational use only and should not take the place of a Physicians advice.

Quite often those with chronic illness instead will rely on their friends and family to 'talk them into going', that way if they really needed to be there their friend or family member helped them and if not (in other words, if it was a 'wasted' trip) then the blame can be placed on the person that talked them into going in... taking away personal responsibility.

This might seem like a cold way of looking at it, but when you really think about it, it makes a lot of sense.

The person with the chronic illness always has first and foremost in their mind the cost of treatment, the fact that someone else must take their own personal time to take them in and that a trip to the ER is not a fix, but a band-aid on the problem. That is a lot of pressure to be feeling when you are already feeling rotten.

Chronic illness takes away many of life's choices... you often cannot make plans because you never know when a flare or attack will strike so you live from moment to moment never knowing what is coming. You cannot eat the foods you love, cannot do the things you love to do and when the illness is invasive on basic needs of life (eating, drinking, breathing) you can't even participate in normal social activities without having to prepare for every eventuality.

You get used to having no say in your medical needs and for this reason you have a hard time trying to decide when you need to be seen... often putting off treatment (such as IV hydration) until it reaches a critical point because it comes on so slowly, building day after day and you actually get used to feeling bad. It becomes your 'normal' and you think that you just have to live with it.

This is something I struggle with (though the 180 mile round trip to the ER adds to my decision making process) and after much thought I have decided on a way to determine if I need to go to an ER or not.

If someone else were to ask me if they should go and they were experiencing what I am, would I suggest that they go?

This is my new litmus test... if I would tell someone else to go if they felt like I do at that moment then I have already answered my own question.

Part of being your own best advocate is to remember that you have to treat yourself as well as you would tell a friend to treat themselves.

Sunday, July 17, 2011

Mood- so-so

Health- iffy

It might be surprising to know that most of the things I have learned about living with an incurable invisible illness I have learned from my Service Dog, Loki.

Here are just a few of the things he has taught me--

1. There is nothing in life that cannot be made better with a snuggle.
2. Sometimes you just have to claim a patch of sunlight and take a nap.
3. If it tastes really good it will probably make you sick, so hide when eating it and maybe the thing that makes you sick will not find you.
4. Wag even when you don't feel like wagging.
5. If you bark long enough you can make people look for what you are barking at.
6. If it itches, scratch it.
7. Never trust someone in a white coat, chances are they will want to do indignant things to you 'for your own good' and not bother to tell you why.
8. Trust your instincts... if something smells bad it probably is bad.
9. Sometimes you just have to chase shadows.
10. Begging can get you things, but you have to do it right.

On days that I am at my lowest and feeling like giving up, Loki will come to me and lay his head on my leg... look up at me... and I will ask myself "what would Loki do?".

Today was not a great day... the pain levels are pretty high (8+) and Loki gave me that 'look', so I decided to do number 4... and I wagged even when I didn't feel like wagging.

You know what... it worked! :~)

Saturday, July 16, 2011

Mood- so-so

Health- so-so

Friends and family try to help... they try to find things that would help those with Gastroparesis or other Digestive Tract Paralysis conditions feel better. It is not unheard of to hear the following advice/helpful hints--

• "I found this great website that sells the cure for Gastroparesis!"

One of the hardest things for those suffering from chronic incurable conditions is the modern 'snake oil salesmen' filling the Internet with websites selling their own herbal blends that they swear cures everything under the sun. Do a search for "Gastroparesis Cure" and your browser will fill with site after site claiming to sell the miracle cure you are looking for.

The truth is that there is no cure... and sites like those only raise then shatter hope as well as empty your wallet. Those herbal blends *might* aide digestion, but they are untested and unregulated so the truth is that you have no clue what you are getting.

• "I have a friend who's cousin had that and they were cured"

There is always the cousin of a friend or a daughter of a neighbor out there that had exactly what you have and they are all better now... but like the friend of a cousin's neighbor of urban legend who saw Bigfoot, the cured person is never tracked down.

It is one thing to encourage and lend support to someone with an incurable illness and quite another to tell them that you have heard of someone with their condition that has been cured which you might think is 'hopeful' and might give them 'fight' but in all honesty it makes the person you are trying to encourage feel like they are in the wrong for not being 'cured'.

• "If you do not think about it so much it would not affect you so much"

You think that they are obsessing over it and if they just stopped thinking about it all the time they would not be bothered by it so much and might even forget that they have it. This is like telling someone that is paralyzed from the waist down that if they just ignored the fact that they had nerve damage they could walk.

Think the two have nothing to do with each other? Think again... Gastroparesis is nerve damage... it is damage of the Vagus nerve affecting the stomach. Not thinking about it will not make nerves regenerate and will not stop the symptoms of the nerve damage and the bodily process of impaired digestion.

• "If you pray for a cure you will be cured"

Often said to bolster hope and show faith, this one is both hurtful and insulting because it puts into question the level of a person's faith in their religion and suggests that they are lacking faith. Faith is often what people who follow a religion and have an incurable illness use to get through the day and rely on when times are at their hardest... it gives them strength to fight the pain and uncertainty letting them know that there has to be a reason and even if they do not know the reason they can rest easier knowing that there is a greater design at work. To question their dedication to their faith is to strip away one of their most powerful coping mechanisms.

• "Maybe if you ate healthy instead of all of that processed junk you would feel better"

Without knowing the reason behind what those with Gastroparesis eat or don't eat or believing them when they try to tell you (after all, we were all taught from a very young age in school the healthy foods needed in a proper diet) you decide that it is all from an unhealthy lifestyle. They need to eat fresh fruits and vegetables, whole grains, fiber and they need to exercise more and you are wondering if they are eating what they eat because they 'like' being sick and getting the attention.

People with Gastroparesis cannot digest fresh fruits and vegetables... they cannot digest whole grains or fiber because of the nerve damage to their stomachs. In a 'normal' stomach the nerves cause muscular contractions which grind the foods into a slurry and when that is done pushes the slurry into the small intestine where the body can extract the vitamins and minerals from the food. In a stomach with nerve damage the contractions are either weak or absent, meaning that the food will sit there for a much longer period of time, hours or even days longer than needed or healthy as the food breaks down in a decaying process (much as food left out in the heat will) and when the food finally empties into the small intestine it is not broken down properly so less vitamins and minerals can be extracted.

For this reason, those with Gastroparesis need to avoid fiber (which is hard to digest) and this means avoiding fresh fruits, vegetables and whole grains and opt for foods that are already processed (what many today call over-processed foods) in some way, foods that will break down easier and give a better chance that vitamins and minerals can be extracted. A common rule of thumb is that foods should all be soft enough to cut with a spoon easily.

As for exercise, many with Gastroparesis are suffering from malnutrition due to diet and the body's inability to extract needed nutrients from poorly digested foods and this leads to a lack of energy and other issues. They will try to exercise where and when they can, but often just getting through the day taps their resources and they just do not have anything left for any kind of exercise program.

As for wanting to stay ill just for the attention it brings... this is simply not the case at all and one of the most prevalent issues for people with any chronic illness is the isolation that comes along with it. Friends do not know how to handle it so they slowly fade away... family distances themselves out of resentment, fear or simply emotional exhaustion because they feel helpless to do anything that could help their loved one and just seeing them this way depresses them. The world of a person with a chronic illness is a lonely one and it is often only those that suffer from the same thing they do that they can turn to for understanding or support.

There are things that you can do or say that could let someone know that though you do not understand what they are going through (you would have to go through it yourself to fully understand it) you understand 'them' as a person.

1. Don't try to fix them... if they say they are feeling bad that day offer them a hug instead of a suggestion on how to feel better.
2. Tell them a joke... sometimes laughter really is the best medicine.
3. Learn more about their condition and don't be afraid to ask questions.
4. When you ask "how are you?" mean it.
5. Avoid saying things like "gee, you don't look sick" or "you look good today" because an Invisible illness is just that, you can't see how we feel. Compliments meant to make us feel better about ourselves can often unintentionally hurt.
6. Call before you visit, but please visit. We might not be up to a visit, so it is always better to call first.
7. Little things mean a lot... calling to make sure that there is something we can eat if we are coming to a function, clipping coupons for us if you run across any for things we use or need (like supplement drinks which are often expensive, sports drinks, tape and gauze, etc) or offering to pick us up if you are going to the store and going by our house anyway.

Just remember... words and actions can hurt, but they also can help.

Friday, July 15, 2011

Mood- improved
Health- iffy

Today was better breathing and for that reason a better day... I am still exhausted, but just being able to breathe is soooo muuuuch better.

The topic for today's post is-- perseverance!

The program I use for health care (an indigent care program from a University) is a great resource, after all without it I would have to medical care at all, but there are major drawbacks.

• 
  
  It is over 90 miles away, so going to the ER is not an easy choice and often impossible due to the lack of gas money.


• 
  
  The Gastrointerologists that take part in the program only see patients for a few hours every Friday afternoon, so there is a major backlog and very long waits... and their office does not do "will call" lists, meaning they will not call you if there is a cancellation so you must call daily to try to be seen earlier.


• 
  
  If there are any issues with communication it can be very hard to rectify, especially if they want you to come 'in' to the office to clear it up.


• 
  
  They do not return phone calls.

When I saw my "Primary Care Physician" at the clinic in January of this year there were many issues with the appointment. They had not received my medical records, or if they had the Doctor did not look at them, so when asked why I was in there I tried to explain the important issues, then when asked what health conditions I have I listed them off... and there are a heck of a lot of them. His eyes glazed and the word 'hypochondriac' was written all over his face.

I asked for a referral to a GYN, a Cardiologist and a GI Doctor... and he wanted none of it but after I insisted he agreed reluctantly to give me one to the GI and GYN, even though (in his exact words) "if you do have Gastroparesis it is obvious that it is not affecting your eating" since I am overweight. I tried to explain that I had lost a lot of weight and was struggling to slow the loss down because there were no treatments available to me and he told me 'don't slow it down, you need to lost the weight'. (This is the kind of treatment those with Gastroparesis get on a regular basis by Doctors that know enough to be dangerous but not enough to treat those with Gastroparesis).

His parting words to me as I was leaving was to get blood drawn (I told him I have deficiencies, including Iron Deficient Anemia) and to see the Social Worker and talk about my 'emotional issues'. That poor Social Worker got an ear full and more.

A week after the appointment I get a call, the Doctor is 'worried' because I am (brace yourself) anemic! I said that I knew that, I had told him that, and there was nothing I could do about it since I cannot take pills and all the supplements and liquid medications I could find have artificial sweeteners which are migraine triggers for me. I asked about the other results... liver levels, magnesium, sodium, etc... and was told that he did not test for that because he did not see a need to.

Another week passes and I get a letter in the mail telling me that I have an appointment on January 20th with the GI doctors... and I freaked because it was January 29th! I had missed my appointment because I was not told in time!!!

Then I took a closer look... January 20... 2012! My appointment was for 12 months away...

I called and was told at that time about how there were only 2 doctors, having appointments only a few hours on Friday afternoons and I would have to call back to check for cancellations if I wanted an earlier appointment.

So... I have been calling every single weekday since then, I missed a few days here and there if I was too ill, but the fact of the matter is that I kept calling and calling. I could have given up and simply waited the year... I could have folded, but I didn't.

Today I called... and there was a cancellation! I now have an appointment in the beginning of September! It took seven months of calling, but because I did not give up I am seeing the Doctor 4 months (almost 5) earlier than I was yesterday.

Do not give up... even if you get rejection after rejection... even if the answer is "no" a million times never give up because one time that answer will be 'yes', and one es wipes out a lifetime of no.

You HAVE to be your own best advocate... you have to be willing to fight for yourself and you have to be willing to pick yourself up time after time and get back to it.

I know exactly how it feels to feel hopeless... I know how sometimes you have to give up on things that you cannot change...but NEVER give up on something that you MIGHT have the chance to change.

Every victory, no matter how small, is a victory and you have to be willing to fight for it.

Thursday, July 14, 2011

Mood- better
Health- improved

Well, I found out why my pulse has been so erratic and I have been so short of breath... I have been having an asthma attack!

I know I have asthma... I have had it for a very long time and it never occurred to me that my increasing difficulty was from asthma because I was not wheezing and my blood oxygen levels were normal.

For those who have been following me, a couple of weeks ago I was attacked by a swarm of ground bees which triggered an asthma attack (with wheezing and the works) and I used my rescue inhaler that day but stopped using it that night because the wheezing had stopped. Unknown to me, the attack had not stopped and had in fact had continued... I was compensating (which is why my blood oxygen levels were okay) but was showing increasing signs of difficulty.

My pulse was erratic... all over the place... every time I breathed in my pulse would all but vanish on my pulse/oxygen meter then bound and jump when I breathed out (something called Paradoxical Pulse) and though I was not wheezing or coughing I just could not get an easy breath in. Take a deep breath... then try to take just a little bit more... you feel that 'over-full can't get any more in' feeling? That is how every breath was getting, especially when I would lay down.

I finally called my Aunt, who is a respiratory therapist and asked her if it was possible to have an asthma attack with a normal blood oxygen level... her answer "yep".

I used my rescue inhaler again (since I have no insurance I can't afford to get another inhaler or nebulizer medication so I rarely use it unless I have to) and the pain the moment I did it scared me silly... it felt like I was being stabbed in the chest and I thought I was going to pass out... then... breathing got easier. I used it again an hour later when the "I can't get more air in" feeling started to return and was soon breathing a lot easier.

I have only the one inhaler (it is expired, ooops) so I am wary of using it more than I have to (I ran out of Advair 10 months ago) and the inhaler I use is extremely expensive (I cannot use Albuterol, the 'normal' rescue inhaler because it causes my tachycardia to skyrocket and my Blood Pressure to soar into the 250/140 range) and there is no way I can pay for it.

I am just glad that I finally found the reason for my increasing exhaustion, heart rate issues and shortness of breath. I am not sure if it is connected to the concentration issues as well, but between the Pediasure and inhaler I am feeling 70% back to my 'normal'.

This is my 'today' with invisible illness... I have more than one of them... asthma is invisible as well and this attack was just as invisible to me, obviously. If I had insurance... if I had access to healthcare that I could afford to drive to I would have been seen weeks ago for what is going on and it would have been treated long before now.

I am lucky.... I am EXTREMELY lucky that my attack did not lead to a heart attack, stroke or respiratory arrest, I have no idea just how close I got to it and frankly I do not want to know. I know that yesterday I was so exhausted and weak that all I wanted to do was lay down, but I could not breathe laying down so had to prop up and this morning I was battling passing out constantly. I know that after using my inhaler every 1-2 hours today I have felt more energy and am able to lay down...

This is a wake-up call for me... and I hope for anyone reading this.

If you have a chronic illness, never assume that a flare will follow the usual path or have the usual symptoms. If you have more than one condition and you do not feel right do not instantly focus on the one that usually affects you the most but take all of your conditions into consideration.

I know I have malnutrition, this is documented and a known fact... it is a result of Gastroparesis, so I assumed that everything going on was connected to the malnutrition. Does it play a part? Probably... but the thing that was leading the charge stemmed from the stings from those ground bees... asthma, and that could have been a disaster had I not asked my Aunt a simple question.

Never assume.

Wednesday, July 13, 2011

Mood- down
Health- bad

Today has been a mixed bag of health, I thought I was doing better for a bit then I crashed hard... pulse all over the place and short of breath, exhausted, nausea, pain and concentration issues.

This will be a short post, I just am not up to more.

Tuesday, July 12, 2011

Mood- trying to be positive
Health- challenged

Today is the 30th entry in the 365 day journey and so far is has been harder than I thought it would be to get online every day and write about how I am every day as well as pass on Awareness tidbits.

My health has been very challenging as of late and I did not foresee this when I decided to take this on, but this is what it is all about. I made plans to do this every day for one year and meeting that goal is hard... not because I can't think of things to write about (even though thinking has been hard lately) but because of the physical toll of simply pulling out the laptop and typing. Plans of any kind are risky at best when you are challenged with a chronic illness because you do not know from one minute to the next how you will be.

Today I have had it a little better... a few minutes here and there where the dizziness lifted and I felt a spurt of energy and I grasped those times with both hands and used my phone to check in on Facebook and connect with my Gastroparesis family and even managed to post a new item in the Zazzle store that I run with all profits going to www.G-PACT.org and even though I am trembling with exhaustion and having chills (considering the heat index was 110 today chills are weird) I consider today a victory.

To live with a Chronic Incurable Invisible Illness means that you have to take your victories where you can and celebrate them as major milestones in life... things that most take for granted we celebrate because to us they are a gift.

We celebrate when we go to a store and come home with enough energy to put the things away...

We celebrate when we go to the Doctor and they do not find a new thing wrong with us...

We celebrate when we wash our hair and do not have the drain clog from the hair that falls out...

We celebrate when we have one minute more energy than the day before...

We celebrate when we lay down to go to sleep and are able to without pain keeping us awake for hours...

We celebrate because to us these are hard fought victories... we got to experience a tiny slice of normal.

Tomorrow might not be a good day... and today was not a good day... but I had a few minutes of 'better' and I invite you to join me in a celebratory victory cry.

Monday, July 11, 2011

Mood- iffy
Health- same

Want to know the bad part about being in a health slump... a flare, if you will, when your reserves are already low? Everything you do to try to restore your reserves is countered by the very thing you are trying to defeat.

My dehydration is starting to affect my kidneys... I know this because they ache, a very unique pain that once you feel it you never forget because it is so unlike any pain you have ever had. (Picture a headache in your lower back on the sides) So, I have been battling to get more and more fluids in to help my kidneys, which increases my stomach pain and nausea, which makes me unable to drink as much.

I am showing increasing signs of magnesium, calcium and zinc deficiencies (part of malnutrition) which causes the memory issues, exhaustion, nausea, brain fog, concentration issues, lack of appetite, metallic taste in mouth and heart rate/pulse irregularities. The affects of the deficiencies makes trying to reverse them hard, especially since I cannot take vitamins or supplements and must get these through nutrition drinks... and since liquids are hard for me to get in... it just gets worse and worse.

Add to this bouts of Dumping Syndrome every single day which for me means diarrhea which depletes even more electrolytes and fluids and I am on a swift spiral to dangerous grounds and I am trying desperately to hold out just a few more days... if I can hold out for just a few more days I can maybe get myself better on my own and if not I will push back on paying another bill and do the 180 mile round trip to the hospital and hope the ER Docs will help me.

This is the life of someone with an incurable invisible illness... bargaining with fate and hoping that they can put off expensive medical intervention because rushed Doctors in the ER who are juggling patients often make case judgements on the fly... you do not look ill and their job is to put a patch on an issue and make sure you will not die that day. It is not that they do not think you are not ill... it is that they just have to make sure you are not going to die then and there, and if you aren't then you are in the wrong place. We know this... we accept this, but there are times that we go in seeking help because we cannot do it at home... we have tried and we need help and can only hope that the invisible is seen by a trained eye and help is given.

I hope I can make it a few more days... my Mother in Law gave me a belated Birthday gift... 3 packs of Pediasure and I am hoping that they can make me turn the corner. I am hoping that I have not passed the tipping point where I can't do it alone.

I am not alone in this... mine is just one voice whispering in the dark... invisible. If you... if society... could 'see' us they would be deafened by the volume of the whispers from the millions who want to be 'seen'.

Sunday, July 10, 2011

Mood- weepy
Health- rotten

This will be a short posting, I thought I was doing better this morning but was soon feeling worse than ever. I am trying hard to reconnect with life but I concede defeat today because I barely have the energy to pull out the laptop tonight and the simple act of typing is bringing me close to tears.

Tomorrow will be another battle... one I plan on winning but for tonight I will lick my wounds and rest.

Saturday, July 9, 2011

Mood- ????
Health- troubled

All I want to do is sleep... but something keeps waking me up.

In February 2010 I was diagnosed with a large septated ovarian cyst that keeps leaking then patching the leak... not bursting but leaking. They decided that it had to come out, but my (then) Primary Care physician was very concerned with my history of anesthesia issues and the fact that I could not take any medications so insisted that I visit and be cleared by a myriad of specialists to be cleared for surgery. That process took 6 months when the GYN surgeon wanted it out in 3 weeks.

Finally a surgery date was set for September 13, 2010... then my husband lost his job on August 27, 2010 and our insurance ended on August 30, 2010 (the insurance ended on the last day of the calendar month of employment termination) so the surgery was canceled. I was devastated because this thing (which I named "Cletus") causes daily pain from the leaking.

It took me 2 months to find a program that I could use to get treatment and another 5 months to see a GYN in that program and after months of going to that Doctor it was decided that I am too big of a surgical risk to have the cysts (there is now more than one large septated cyst, at last count there are two large septated cysts and a small unknown mass in my liver) removed... so they want to 'monitor' them.

Fine and dandy for them... but I cannot take so much as a baby aspirin for the pain (thanks to my Gastroparesis and stomach damage from ulcers) any anyone who has dealt with ovarian cyst pain can tell you that it can be extreme.

The daily pain I have learned to deal with... but every once in a while (like now) the pain flares... it feels like my abdomen is being ripped open from the inside... the skin actually feels like it is tearing, hot, sharp and 'acidic' (like acid being poured into my abdomen).

I try to sleep, because I am so exhausted... so drained... but I will awoken by a slashing pain in my abdomen that literally rips me from sleep... but I will fall back to sleep, almost pass out, only to be awoken again.

I want to be able to go to the ER... I want to 'know' that if I go in they will 'do something', but I know from past experience that do go in they will do a few tests then tell me 'it is your cyst, see your Doctor" and release me and the only thing I will accomplish is spending money for gas.

Now I am wondering if the increasing brain fog and exhaustion is from an infection in my abdomen, but even if it is there is nothing they will do. I have an IgG deficiency and something called 'lycopenic response with a shift to the left' which means that my body does not respond normally to infection. Normally infection will cause an elevation in temperature and an elevation in white blood count... but not for me. I will not run a fever with an infection, no matter how severe, and my white blood count does not rise in response and the white blood cells that are released will be immature. The best I can hope for is a single IV of antibiotic and a prescription for oral antibiotics that I would not be able to take and a recommendation to 'see your doctor'.

I wish my Gastroparesis had been diagnosed in time to prevent the stomach damage... ulcers caused by pills sitting in my stomach so long they ate into the lining of my stomach over and over. I wish that my Gastroparesis had been diagnosed in time for me to at least try one of the medications for treatment. I wish that I did not feel so let down by medical science and the failure to diagnose due to ignorance of a common condition.

This is why I am doing this blog... because it took over 20 years for me to get a diagnosis!

I do not want anyone else to go through what I have... to be stuck where I am... I am not raising Awareness for me... I am raising awareness for those out there who are just starting to show signs, so that they can be diagnosed and properly treated early enough to maybe make a difference in their lives and quality of life.

Everything in my life is affected by Gastroparesis... the ventricular tachycardia attacks I have (had a major one today that lasted over a minute) that cannot be treated because I cannot take the medication to treat it... the ovarian cyst pain that cannot be managed... the ankle and knee pain that cannot be managed... the malnutrition... none of it can be treated or managed due to Gastroparesis.

Yes... it can happen to you... it can happen to someone you love... without warning and often with no known cause.

This is why I drag my laptop out daily, no matter how bad I feel or how much the simple act drains my last reserves of energy, not because it is happening to me... but because it could happen to YOU.