Mood:  on fire

Finally finishing up on some much needed and long overdue painting projects. Thank goodness for my friend helping! NO WAY could I even attempted doing this alone! Honestly my back was on FIRE by the time I got up and once again it took me awhile before I could even get up off my couchbed. The fur kids didn't mind though seeing they are enjoying catching up on some much needed rest. I was bound to get some sleep last night so I took my pain medication which works wonders but if you allow it you could sleep for days.

Talking about NOT getting caught up in and around the house! NOT!

There have been constant visitors looking at the Halloween decorations and classic horror movie characters outside. After the first few days you tend to get used to having cars outside and groups of people in the yard taking photos. Littleblue even enjoys scaring a few visitors by laying on top of the displays, hahaha! Shes so silly! Oreo has gotten a bit into the spirit of the season with his new sporty sweater. Although the weather isn't sure once again if it is fall or summer. Temperatures are starting to climb once again into the 80's which makes for more viruses to pop up making everyone sick. I am now being extra cautious when out in public!

My butterfly friends have been few and far between this year but to much surprise I am starting to see quite a few lately. I assume the last warm dose of air are bringing them out now. They sure are beautiful and I have seen a few already today. I haven't been able to sit back and enjoy my backyard beach just yet but plan on doing so this weekend.

After all the projects are now being finished up one thing this gal does need to do is give my poor body a much needed break and REST!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

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Mood:  d'oh

What my brain fails to understand and follow is that my poor body just can't keep up with everything that it wants to do. Boy! is my brain STUBBORN! Now that I over did it today seeing I am limited on days in between the next Hell-In-A-Jug aka Drano treatments I have been on a mad dash getting things done. This includes chores, bills, errands and finding time to get two rooms painted.

THIS IS NUTS!

Luckily I have my friend who was willing to gladly help out today although I tend to think three or four sets of hands might had been better than two. Not if running around like a crazy person wasn't bad enough everyone seems to be getting the darn flu! DOUBLE YIKES! With fall being my favorite season and time of the year what I don't look forward to is all the nasty viruses that are now going around including a few different types of flu. If I make it through the remainder of this week without catching it I will be SHOCKED! This gal won't be knocking on any wood nearby you can trust me on that one!

With a list of things to accomplish today with one very exhausted and tired body needless to say not everything got done. Honestly my spine issues as well are getting far worse. Now if I sit for more than 40 minutes at a time my back locks up and I can't hardly get up. I can hardly stand straight and must hold onto the closest thing nearby before my back eases up enough to move again. This is the down side of living with a condition that not only doesn't allow for proper nutrient absorption but also destroys every last nerve in your body. The spine is no exception. I really don't feel like going through another scan only to find out things are much worse with my spine because I don't need to pay money to find that out. I can feel it! GRRRR!

I now see what other fellow Gastroparesis patients mean when they say, "I just keep things to myself because I am in so much constant pain that who really would believe me or even want to hear about it?" I totally agree with them 150%! Gastroparesis can cause the most wicked of pain because nerve damage is by far and by fact the most difficult pain to be treated or even managed. If anything it does feel good for me to write about my pain as a way to vent. I don't like taking the heavy duty narcotics but nor do I enjoy drinking toxic poison twice a week either but in order to live you must first learn how to survive. AMEN!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: October 5, 2011 3:32 AM EDT

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Mood:  bright

No sleep. Headache. Drained. Fever. Chills. Inflammation. Nauseated. Dizzy. This is all part of dealing with the ole Hell-In-A-Jug aka Drano weekly treatments.

Might as well say you can FORGET ABOUT SLEEP! Hopefully I can start catching up on it by this evening or early morning hours. This treatment didn't do so good and I sadly need to repeat things again in three or four days. My specialists and surgeons biggest fear is it stops working completely and then things will really get tricky! More like scary! You just never know the hidden consequences or reactions when you drink this nasty toxic stuff! Its a catch 22. I need to do the treatments but then sometimes I am quickly finding out they don't work or it gets stuck somewhere in my paralyzed fused intestines.

At least I can think about the fun we had at the 2nd annual 'Hot Sauce Festival' this past weekend. I am so glad I pushed myself and got out! I went to it last year and learned from prior experience what not to touch which is pretty much about 90% of the vendors samples. Although everyone else was bold and I even talked them into trying the really blazing HOT stuff! There was a hot chocolate sauce and hot lollipop eating contest and although I do love chocolate Gastroparesis & spicey foods just don't mix but it was sure fun to watch! We couldn't had asked for a more perfect fall day for the festivities! It was different and fun! Key word is FUN! What I am doing my best to add more of in my life. Amen! The best part was being able to dress up and blend in with the rest of society. Being a girly girl!

So back to reality and back to the bathroom. Its all part of the Drano fun! WHOAHOA!

NOT!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: October 4, 2011 2:13 AM EDT

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Mood:  d'oh

It's the day from Hell! Its Drano day aka Hell-In-A-Jug AGAIN! You know its the start of a bad weekend when I lifted my car floor mat Friday only to find a frown guy looking back at me. OK, it was funny at the time! Hahahaha!

So the small break I got was nice to say the least but trust me when your insides don't work and need assistance you can only wait for a certain amount of time. The pressure pain was getting to be a bit too much and I surely don't need another hospital visit. Walgreen's was also getting inpatient with me seeing they had my refill waiting for me since Wednesday. This was after my insurance company once again kicked out the approval for refills because they feel it is, 'Over the recommended dosage. Is not proven safe to consume on a daily basis. The medication is only to be used once in a lifetime.'

Surely they haven't met me or my UFO body! AMEN!

My Gastroenterologist had to fax in my prescription as well contact my insurance company regarding medical necessity on the Drano although this is now the third time. I doubt I will ever be trouble free with my future refills. It is what it is. So around 2pm after finally getting a pretty decent night and into the early afternoon my friend drove me up to get my medication. The good part was having them go with me seeing I wasn't expecting 'AN EARLY TRICK OR TREAT!'

HOLY CRAP! (No pun intended! Hahaha! Only I would get that pun and find some humor with it)

Not only did the head pharmacist look beyond stunned and shocked but I can't imagine the customers behind us as it took them also by surprise. Instead of allowing the awkward situation to get any further awkward I made a fast comment by saying, "Isn't that crazy!? That's what happens when your intestines and insides become paralyzed. You have to force things through your body." The pharmacist replied back by saying, "I haven't ever seen anything like this. They have to do advance orders from the drug manufacturer just to cover your order once a month." I can't imagine the looks from people as we both walked out of the store but they were most likely PRICELESS!

Once we got back to my house my friend dropped me off so I could get my jug mixture ready and start treatment this way they could go home for a few hours and catch up on some cleaning, etc. I made it through my jug treatment but lets just say holding off for a bit wasn't wise. The salt feeling in my eyes and the burning was horrible! The fog feeling and not making any sense was annoying. The worst part was the cardiac side effects it gives you so let's just say Mr. Drano wasn't too kind to this gal.

That's all she wrote as I ended my weekend and here I am home on my couchbed for a fairly lengthy recovery process. That is when this toxic poison decides to finally work and rid out of my system. That could take days...All in the life of Drano drinking...

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: October 3, 2011 1:08 AM EDT

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Mood:  happy

WHOA! It's October 1st and not only is the evil, wicked September behind me now but its a time to celebrate because its finally October and finally Fall!

I LOVE FALL!

Fall is my favorite season followed closely by Winter and snowwwwwwwww! LOVE SNOW TOO! This makes for one happy gal over the next more than few months!

I had to give myself another day to break away from the ole Drano. The pain is getting pretty bad but when stress tries to come knocking at my door it is best to wait things out. I don't need any further problems or unwanted complications during treatment. Today is a day to get out, enjoy the crisp fall weather and r e l a x...de s t r e s s...

Posted by GastroparesisAwarenessCampaignOrg. at 11:12 PM EDT

Updated: October 2, 2011 2:43 AM EDT

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Mood:  celebratory

After almost a decade now living with Idiopathic Gastroparesis I have finally realized after many life lessons the one person whom you can always rely on is, "YOU/YOURSELF."

If you want something done never expect anyone to jump in to help. People do things in life to help others not because they were told but because they wanted to do it. It should be 'effortless.'

There are many changes ahead and all positive. I am happy to say I have been blessed to work closely with my specialists taking all the necessary steps to rid any hidden stress. Gastroparesis and stress don't mix. The two together are deadly.  Sure it would be great to have a mountain of support but if this gal can survive eight years with only a small handful of people in this city (less than 5) then surely I can go without less. I am a firm believer you can do it. You can survive. Its not going to be an easy road but it can be done. TRUST ME IT CAN! I know so because I live it.

Someone once told me on more than a few occasions, "If only our condition was treated with the same respect as cancer then maybe we would all finally have support." Most believe our condition is like the flu or stomach virus. Most think it will disappear or just fade away. If only it were that easy folks! The only thing that does fade away over time that most Gastroparesis patients face is either friends or family that grow tired of our chronic condition. What they fail is acceptance and educating themselves.

Someone sent me a really good quote this week and I thought it was worth sharing. I also have one of my own I keep close to my heart. It reminds of living with this crazy, never ending and showing no mercy condition called, "Gastroparesis." I found this quote to be very powerful! When in doubt always remember you can rely on #1-YOU!

There comes a time in ones life when you have to stand up and shout:

"This is me! I look the way I look, think the way I think and feel the way I feel! I am a whole complex package. Take me...or leave me. Accept me or walk away! Don't try to make me feel like less of a person, just because I don't fit your idea of who I should be and don't try to change me to fit your mold. If I need to change, I alone will make that decision. No one else but me. When you too finally come to that road when you are strong enough to stick up for yourself, protect yourself and love yourself 100% then you too might be in a better place in life not to judge."

-Anoymous

"Gastroparesis patients don't ask for their condition. When God handed us our full plate he only gave it to the strong. He gave it to me because he knew I could handle it. I have and I will. Even if on my own."

-GP Rocky

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT

Updated: October 1, 2011 3:53 AM EDT

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Mood:  celebratory

So I 'WAS' down to only 5% stress until around 1am this morning when things took a strange turn. Needless to say it was a very interesting morning into early this afternoon. I have come to realize not only did this gal keep her backbone in check but have decided its finally time for some serious changes in my life. Its time to cut all unnecessary stress or drama and keep it there. Time to set not just one bottle out to sea but an entire case of them!

I am with my fellow GP friends in saying, "There isn't anything nor anyone worth the stress that we all don't already endure on a daily basis. Don't make excuses for anyone or anything just take care of #1-YOU!"

 I couldn't agree with them more.

My birthday is quickly coming up and I am hoping to continue more changes looking nothing but straight ahead. I don't believe in looking back or holding onto the past. Why? It was left there for a reason. I have done more research looking into houses in Henderson, Nevada. I won't be moving alone of course but with my unique medical condition if I want to pursue my dreams why wait? The future looks bright and the warm desert sand is starting to quickly look as well very promising! Now to start talking the fur gang into the big move. I am estimating things to unfold and take around 10 months.

Its time to turn over a new leaf! OK, maybe a few of them!

I was advised to hold off on treatment today seeing with the last 24 hours it is safer to wait till things calm down so I don't risk further cardiac problems that I don't already endure with the ole Drano aka Hell-In-A-Jug. I have a WONDERFUL and AMAZING team of specialists and I have learned this week they truly do HAVE MY BACK! Why wouldn't they? Just like fellow GP'ers they understand what I go through and its important sometimes to be reminded just how touch and go my condition can become so its important no stress.

So this evening as I finally got my couchbed together and laid down I smiled the first smile I had all day because my stress level was finally back down. All the way down. It feels GREAT! GOOD FOR ME BOUNCING BACK! Always remember, "You CAN'T KEEP A GOOD GAL down. No matter how tough life can get!" AMEN!

Posted by GastroparesisAwarenessCampaignOrg. at 11:04 PM EDT

Updated: September 29, 2011 11:42 PM EDT

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Mood:  d'oh

Oh for crying out loud! Can't something go right for a change? Can't something go smoothly without endless complications or additional problems?

After a not so great night of sleep and a very swollen mouth I woke up with a sharp something with my lower tooth that kept cutting into my tongue. This was after a six hour toss and turn night of sleep. I wasn't sure what the heck I had going on but it wasn't any of the teeth they worked on yesterday. I was going to just 'call' my dentist's office but figured 'oh what the heck!' I will just drive up there and have my friend go with me. I honestly just wanted a day to sleep although my Gastroparesis begs to differ and my mouth said it was important I went back to the dentist.

UGGGG!

Once my friend got to my house we headed up to the dentist's office. They had a fairly slow day so were able to get me back into a room within ten minutes. It seems during my DENTAL VISIT FROM HELL YESTERDAY when they got a metal band stuck to my lower teeth with composite they also accidentally got composite on one of my teeth and chipped it. So of course the drills had to come back out. All three of them. I said,  "We can forget numbing me so just make it quick." My mouth was still swollen and my gums inflamed. After about ten minutes my tooth was fixed and a very tired me headed back home.

I should had done my Hell-In-A-Jug treatment today but with lack of sleep and aggravated teeth I decided it might not be the wisest idea so it will have to wait till Thursday.

When I walked in the front door I found a very bored pup named Littleblue who once again decided to unstuff her stuffed animal. A huge mess awaited me, same as the other unstuffing projects she does while I am gone. They always say, "Never leave a Husky home alone." Hahahaha!

The rest of my day was lazy to say the least because I was in pain and crabby not to mention I AM BEAT! After doing some juicing the couchbed was calling and this time I listened. I will need all the extra rest I can get for treatment day tomorrow.

ZZZZZZZZZZZZZZZZZZZZ.............

Posted by GastroparesisAwarenessCampaignOrg. at 11:01 PM EDT

Updated: September 28, 2011 11:28 PM EDT

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Mood:  not sure

I have a few things on my mind today. One is the dream of waking up putting my feet in the warm desert sand. Where else but VEGAS BABY!

Honestly I just really love the city and all the endless possibilities where dreams don't just come true but life evolves around fun! FUN! Something that I have lacked in my twisted Idiopathic Gastroparesis life for years. Actually almost a decade! YIKES! I have looked into the housing situation out west and honestly even if I moved into a rental they are far more nicer than those in the big city. I have no desire to jump into a house loan out west. Why when its nothing more than a headache and a huge money pit in this horrible economy. If only I could get my parents to load up a UHaul and follow behind me because this gal would JUMP in a heartbeat! So for now I might just have to push that dream of mine to the side. I would love to put a end to this chapter of bad memories in this city. The open possibilities starting a new lease on life and a fresh slate would be WONDERFUL!!!! I think the fur gang wouldn't mind at all although I tend to think they would miss their wildlife buddies outside.

With the help of my pain medication I finally caught up on a bit of shut eye this morning into the early afternoon. I had to set my cell phone alarm since it is my last dental treatment today. I never thought I would get there but here I am and can't wait to put this dental nightmare quickly behind me! My friend had their first dental visit today since switching over doctors. They found the office I go to very nice with a great staff. The rooms are all new and state of the art not to mention that huge relaxing salt water tank in the waiting area. BONUS! My appointment was for 3:30pm and their appointment was at 4pm. Honestly I would had been right on time if it were not for catching a five minute train on the way.

One would think I would know better to expect any doctors appointment to go smoothly and I don't know why I thought today would be any different because it wasn't. It actually turned into a DENTIST APPOINTMENT FROM HELL!

YIKES!

There were only three teeth left to rebuild and fix so surely it would had gone so much easier than my last three appointments right? WRONG! The first huge problem was my dentist could not get me numb. This was after three tries and using the full 500 dosage of anesthesia. Even he was baffled as well his assistant. I just shook my head in huge disappointment and said, "It never fails. Every doctor appointment I have ever went to has never gone smoothly. Its one thing or another and this is just NUTS!" They could tell my frustration once they shot more medication into my nerves and gave it a ten minute break in between each dose then started drilling again. The sharp stabbing pain times 100 sent me about through the roof! "OUCH! GEES! DANG IT! GRRRRR!"

Just a few choice words but trust me I had many more in mind!

Finally after going on almost two hours of drilling then stopping then drilling then stopping since it was obvious the medication wasn't working I had to just suck it up and deal with the absolute worst 'FREAKING PAIN! I clinched my teeth so bad my dentist had to keep telling me to loosen up so instead I gripped my hands and feet together for three hours of a patients worst nightmare. One thing though I can say is, "I MADE IT!" I AM FINALLY FINISHED WITH MY FOUR DENTAL TREATMENTS! WHOAHOA! And over $3,000 later.

My friend said there was no way in hell they could had went through three hours of drilling without being numb and hats off to me for really enduring what most would never endure. My dentist was even amazed I lasted through the entire procedure. Once they cleaned everything up we sat down to talk as I found out my main nerve that runs from my ear to my jaw no longer works. It is dead. My dentist said the chemical problems within my body as well severe nerve damage from my Idiopathic Gastroparesis not to mention the damage from the ole Drano aka Hell-In-A-Jug is really taking a horrible toll on my body. He asked, "What does your doctors and surgeons think of enduring this deadly mix on a weekly basis?" I told him they said, "We have bigger concerns to worry about besides your teeth. We have to be concerned first for keeping your blood from becoming toxic." My dentist said in response, "I can understand but it should worry them the damage I am seeing on the surface that can only be much worse on the inside as what it is doing to other vital organs. I would be highly concerned if I was you having to drink this on a daily basis but I do know there is no other option." The other comment which I have heard many, many times over and over again I also heard from my dentist was, "Your body is really out of whack! Your central nervous system is barely existing. You are a very complex and complicated patient. I haven't had this happen ever before in my many years seeing someone with such extensive nerve damage. What you are drinking is doing the same if not far worse than most chemo patients I treat."

So after leaving with more concern regarding not just my Idiopathic Gastroparesis but drinking the Drano on a weekly basis it has me once again questioning how I want my ship to go down. Slowly or quickly? Hard suffering or a quick punishment? Hmmmmmm.....Well for now I was just glad to run like HELL out of that dentists office and head to the car. I was very glad just to get home and find some peace and quiet. My head was rocking and later this evening my mouth was on fire with pain! It will be a very long night to say the least.

Let's just say it wasn't the time, day or the place to stress me out and I think I found the first passenger to aboard the Island of time-out. A few of my fellow GP friends were right on the great idea making this island for those who lack respect for anyone who is sick and causes a patient more stress than they already have to endure on a daily basis. SHAME! SHAME! SHAME! ON THEM! For now though I leave the first guest with a smooth flight and plenty of coconuts.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: September 28, 2011 1:35 AM EDT

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Mood:  mischievious

Doing the ole Drano countdown! UGGG! Might as well enjoy this last few days of freedom before being once again house-jail bound. I also have my final dental treatment tomorrow so it is indeed time to celebrate something at least positive! WHOAHOA! Let's just hope I won't have to come back and see my dentist any further this year. Honestly I feel the exact same way about all my specialists although once again I am back to see my other surgeon next month. Seems since my lazy paralyzed intestines like to wrap around my organs. I have had a pretty good size cyst for the past year that hasn't gone anywhere and obviously is in no good position to be surgically removed so my gyn surgeon likes to keep a close eye on things time to time. I haven't seen him or really the entire surgical team since around five months ago so I am long overdue.

Call it just part of the GP life.

With Gastroparesis shutting down the electricity to digestive organs it can also throw my other organs all out of whack (my term, not my doctors because he has worse choice of words more PG rated). It makes your body not know if it is coming or going. Mine I think has been going. DUH! Hahaha! It can also cause back pain. Not that having spinal pain isn't enough but my cyst is stuck posterior and both my surgeons are in no position to go on in surgically and aggravate my already aggravated Idiopathic Gastroparesis nor take a very high risk chance of paralyzing me. We can only hope this cyst stays more stable in the near future. So only one specialist appointment lined up for next month and hopefully no more to add. Its been tough though lately as I find myself struggling to get up without the help of my cane but it is what it is.

The traditional Halloween outdoor display is being set up this week. Its a week long process. It is actually the 8th year and I have already lost count of how many people have stopped by to view the set up process. Honestly though its been a great way to add some laughter back into my life and watch others who find joy in being scared. BOO! Call me crazy but my Gastroparesis has been scary enough through out the years. There is nothing more scarier than that! My friend also has been helping out and getting involved this year. Its been nice finding something else to keep my mind busy and off of being sick. Its also been a wonderful way to tap into my inner creativity!

I figured the scariest thing would be for most people a clown. Let's face it, most kids and heck! even adults don't like clowns. I decided to stay way under budget and make my own outdoor prop out of holiday wrapping paper I had at home, old cardboard boxes that were free from a local store recycling dumpster as well a horn from an adults bike. The mask was really the only thing bought and that was a gift from the Halloween fairy (is there really one?). After putting the cardboard boxes together using duct tape and packing tape then adding wrapping paper you have yourself one heck of a surprise!

YIKES!

Imagine little Johnny seeing this under the tree for Christmas?! Let's just say once Mr. SCARY CLOWN jumps out the top of the box and blows the loud horn its enough to make me even want to run the other way! Hahaha! Its true. One can never have too much laughter in life and indeed laughter is the BEST MEDICINE!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: September 27, 2011 12:37 AM EDT

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