Mood:  sharp

This is getting old!!!! I feel like I have plenty more patience to give but sometimes one pain affects you completely different than the others when its in your tailbone area and wraps around your entire leg. I can't sleep on my left side, I can't sleep on my back and I can't sleep on my right side unless I continue to hang my left leg over the couch or rest it on the step stool. The living room is once again looking like a make shift medical supply store. Hahahahaha! Add crutches now to the mix. Whether I like it or not I must admit keeping weight off my left leg and spine is a heck of a lot better than constantly enduring the stabbing hot nerve pain! The wheelchair is a great idea but its still uncomfortable to find a position that doesn't make things worse.

With not much sleep last night I still managed to get up once my cell phone alarm went off at 1pm. 1pm to most is a time you wake up during vacation but trust me being sick and disabled is NO VACATION by any means. Its exhausting but far from fun. Amen! I had post it note reminders waiting for me once I got up and I wanted to try getting through most of them before my Neurologist-Neurosurgeon appointment later this afternoon. This week and next week I like to call "Hell Weeks" but I must keep in mind all bad things eventually do come to an end. My friend Kevin always makes sure I keep those exact words in mind when having a stressful day.

Between the insurance company, Cobra company, Court docket office, legal offices, SSD office I am COMPANY-OFFICE MAXED OUT! Hahahahaha! I did accomplish all my necessary phone calls just in time to leave me a few hours to jump in the shower and take my time getting ready. I am not sure why some people think just because you are sick or disabled you are less competent than others. Lately I feel like I am being constantly challenged with my level of intelligence. Sorry to say folks but being sick actually makes you smarter and far wiser! I like to say us "unique" folks are more in tune with life in general. We also by far work harder than the normal person. Give us a challenge and I bet we will not only succeed but also prove you wrong. Titles for any job are just that "Titles" and it doesn't necessarily mean those who are disabled can't learn to do the same job. It might take us a little bit longer but I bet the finished product will turn out better because we take our time. Like I said, just because someone has Gastroparesis or any other disability doesn't mean you should question their abilities.

By the time I got ready and helped to clean the house up a bit we headed off to my doctors appointment just in time for rush hour traffic or so I thought...3:45pm and we actually were ahead of traffic! Once we got out of my specialists office it was 5:30pm and surprisingly on the way home we didn't hit much work traffic either. WHOA! The drive was smooth but it wasn't a smooth ride for my back so I do my best not to take too many car rides for now. This week must be an exception since I have another important event to attend Thursday then back to my other specialist Friday and a few more tests. This is definitely going to be a low key Easter weekend for this gal!

I don't expect to be cured by any means or a magic wand waved over my tired insides. What I do expect from my specialists and have yet to be let down is pure honesty and a lot of medical education. My Neurologist-Neurosurgeon said, "You have a lot of nasty things going on inside your body that are causing you various types of pain. Its smart you are not taking strong narcotics that will only make your GI issues worse. I am not sure if or when things will get better with your spine and trapped sciatica nerve. We could try you on light physical therapy but I am afraid since you have other serious problems going on we could possibly make them worse. I don't think we need to put you in any further pain." Me and my friend-Caregiver totally agreed! They do want to run an MRI but I can't even sit still longer than five minutes without the pain getting worse. This presents another problem so for now I was asked to try my best keeping weight off my left leg if all possible. The nurse said, "Since your right leg and hip are compromising for your left side you are going to end up with problems as well with that leg so do your best using medical means whether the crutches or wheelchair to give your body a break." I agree.

So we left my specialists office with exactly as expected-more information and medical education. Maybe not a cure or a magic pill but remember I am the type of person who does better "in the know" than the "unknown." Since I still have quite a few tests and doctors appointments over the next few weeks they will wait to see what things show and then my team of amazing specialists will take things from there. Its a very strong possibility there isn't anything further they can do but try to manage the pain. I am looking at a 90% possibility. If only my tired body wasn't so tired they could discuss surgical options but those are out of the question so for now I continue to take things one day at a time.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 4, 2012 1:14 AM EDT

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Mood:  lazy

I sure hope this month passes as quickly as last month! So far my kitchen cabinet keeps growing with post it "TO DO" notes. As soon as I got up today I quickly added three more. YIKES! This might become the dreaded month of April and today is only the 2nd.

With two specialist appointments lined up this week on top of other things that must get done I am already feeling mentally exhausted. Its one thing to be physically exhausted but a completely different situation having both at the same time. I didn't get much sleep last night due to nerve pain making its way around my left leg. Luckily my Neurologist-Neurosurgeon decided to bump up my appointment so I see him tomorrow. He totally understands the nerve pain I am experiencing but needs to make sure I continue having proper blood flow to my leg. This afternoon I did my best utilizing the crutches and although it did help a bit with the lower spinal pain it also was tiring as heck so I quickly gave up and resorted back to my cane.

Last night we had some wicked storms and once again the summer like temperatures have made their way back. The constant change in season is starting to effect all of us so we decided to have a very lazy evening...My friend-Caregiver's allergies are finally getting to him so he is even utilizing wearing masks outside. The grass grew back in a matter of days so once again it will need to be cut. Masks work great but not 100%. I have a hunch it will be a restless night of sleep for him tomorrow and a very exhausting week for me.

"Man - a creature made at the end of the week's work when God was tired."

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 3, 2012 2:02 AM EDT

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Mood:  cheeky

Wow! We are going on the fourth month of the year 2012 and honestly I can't even keep my days straight anymore. Hahahahaha! I thought today was Monday and asked my friend-Caregiver once we got up mid afternoon if he got the mail yet. Ummm...Its Sunday not Monday. OOPS! My days just blend together anymore same with it being April 1st when I was just getting used to it being March.

Since the weather has been nice the past few months we have seen an over abundance of what I like to call the "unpredictable, relentless folks."

Neighbors have been sharing their own stories of various escape routes while another neighbor actually put up a very long blind for their front door so the religious teams don't literally keep looking into their window to see if they are home. Hahahahaha! Others go into hiding then peek to see if the Bible team players have left their porch. Yes! this is crazy but starting to get annoying for everyone. This morning around 11am we had our own knock at the door. For crying out loud, not again! We just had two Mormon's this week, two Jehovah Witnesses last week and now they have come back again? I told my friend-Caregiver, "Don't open the door, this is nuts!" Of course once we got up around 3pm I opened the front door instead to find a proposal for houses on our street to be bought by a church around the corner.

ARE YOU SERIOUS?!!

Since when have you heard instead of churches helping those to stay or keep their homes are now trying to purchase or push them out? WOW! Just a shame how churches are becoming nothing more but outlandish businesses not caring for their members but instead about the almighty $$$$. Didn't I just blog about "Good VS Evil" the other day? Now we are all being put on high alert again hoping the not so warm and friendly church doesn't try to take property from those who have lived on the street for years. It was just three years ago the same church tried their darnedest to buy portions of residences backyards in order to put in more parking spots. They must had forgotten they already had enough spare land of their own to extend their parking lot. Once things had resolved and the church backed down it had already angered those who live the American dream by owning their home. Now three years later its all starting again but since the first attempted effort went way, way wrong they are now just "offering" to purchase homes.

WOW!

Instead of the old kids song, "This is the church, this is the steeple, open the doors see all of the people" we now literally will see all of the people if a parking lot gets placed in every ones backyard. YIKES! Takes the words, "Sunbathing in the nude" to an entirely different level. Hahahaha!

So in between preaching visitors when least expected popping up on a weekly basis around the neighborhood we now have another church wanting to build parking lots outside our backyards. Some neighbors have told us the best way to counteract the behavior of religion gone bad is:

#1-HIDE! Don't come out until the coast is clear!

#2-Large blinds. If you get enough advanced warning pull the string and walk away!

#3-Come to your door naked. Hahahahha! I also had to laugh on that one!

#4-Ask for their address. This way you can let them know you will also be visiting them all days and hours of the week with your own Bible and religious beliefs.

#5-The Best! Speak in your own language. Just make it up as you go but make no sense. Laugh out loud!!!!!!! Could you imagine the facial expressions? I can only imagine! LOVE IT!

I have cleaned up letters, note cards, pamphlets, etc over the past few months that now I might just get some Gastroparesis Awareness Campaign gear together and educate them on true suffering. Amen.

I got a few funny church signs from fellow friends that are actually taken from various churches around the great USA. Maybe those who do what you aren't suppose to do which clearly says in the Bible need to read these as an example.

I belong to two churches. One after today I will no longer be attending seeing I don't agree with trying to buy or oust families from their homes. The other church I belong to is the same one I was baptized at although sadly it is a bit too far from my home. I believe those who want to pray in groups its wonderful to be part of a church family (minus trying to monopolize your parking lot) and you can always pray at home. God doesn't judge whether you worship inside or outside a building.

This Easter me and my friend-Caregiver wanted to attend Sunday church service but between my unique sleep schedule due to my illness and his work schedule it will be touch and go. I am hoping to find a local church that instead offers Saturday afternoon services. The rest of Easter will include me, Drano and the comforts of home. Hey, it happens and life happens. Change is sometimes inevitable but you have to take it one GP day at a time!

This concludes my Sunday online blog service. We don't take offertory but do welcome candy donations on your way out. APRIL FOOLS!Hee,hee,hee,hee,hee...

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 2, 2012 2:34 AM EDT

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Mood:  d'oh

It's amazing that even I quickly forget in a blink of an eye that ummmm...MY GI TRACT DOESN'T WORK! DUH! Tell that to Uncle Ben who happens to be the most wicked Uncle I have ever come across! Three spoonfuls and that's all she wrote folks and if this box of rice looks huge next to this kid imagine how HUGE it feels right now in my stomach. UGGGG....

Note to self: NO MORE NOT SO BRILLIANT RICE IDEAS!

So today did start off on a better note until this evening when I made the horrible rice decision with Uncle Ben. S I G H...What was I thinking? That's the problem, I obviously wasn't thinking nor remember that rice is the WORST thing to sneak even if its only a few spoonfuls because in a paralyzed stomach all it does is E X P A N D...OK, I must close the Uncle Ben chapter for now and hoping to never open it again-literally. WHEW!

We didn't wake up today until 3pm but I am happy to say with help from a small white pill I was able to catch up on a bit of rest. My friend-Caregiver also caught up on some much needed sleep. He has been super busy taking care of things I no longer can do since I am limited with my leg and lack of energy. My doctors need me to keep a close eye as well on other things so I don't develop any infections. Thank goodness no fever or vomiting that isn't GP related. I am still having low blood sugar and low blood pressure issues but I had those for quite sometime now so its just things I have to stay on top of along with everything else. I told my friend-Caregiver today that I am starting to get used to the same pain which sounds crazy to say but I tend to think after two weeks you build a tolerance. Mine must now be off the charts! I have been using my cane, wheelchair and now my doctors have added crutches to the mix that way I don't put so much strain on my good leg. Its one thing my insurance company "WILL COVER" without making me jump through hurdles. Trust me, its rare!

Since I am getting beyond tired of being in my house-jail we decided once I got my test done this afternoon we would go venture out to the local mall. Sounds like a great idea but how soon we forget until I am placed in a bad situation what we forgot to take with us. DOUBLE DUH! The cane is great but the pain got to be a bit too much after an hour but not only that since I just came off treatment I forgot to bring my blood sugar monitor and my sugar started to quickly drop! Not a good situation to be put in and scarier for my friend-Caregiver but thanks to his quick thinking he found a table and chairs then quickly headed to find anything with sugar and salt. Since we forgot to bring the wheelchair seeing we moved it from the back of my car to inside the house we had to sit and wait things out until I no longer felt dizzy and cold. It took around 20 minutes and once I felt comfortable enough to stand back up I slowly caned my way back to the car and we headed home. THANK GOODNESS!

We both learned a very scary but valuable lesson which is to double check and make sure we have everything just in 'case' something happens while we are out. It would also be smart to buy a backup blood sugar monitor to keep in my purse. Later down the road we might just get another wheelchair so my friend-Caregiver doesn't have to keep playing musical wheelchair from the car to the house and the house to the car. Sadly I can't predict when my blood sugar levels will drop and although I do keep glucose tablets in my purse they don't always do the trick so its important I still keep candy with me. Its the great GP balance game which unfortunately many patients also have to go through on a daily basis but keeping calm is the key! I am fortunate to have my friend-Caregiver who lately is becoming an expect knowing what or when I need something and how to react quickly while staying calm. I also credit my specialists who work with him now so I get the best care possible. Amen.

This evening since I was already beat we decided to give my poor body a break and play the game of "Life" on Wii. It was pretty fun and guess what? I won the "GAME OF LIFE!" WOOHOA! Its about the only game of life I am winning, hahahahahaha! If only our lives were as easy as the game huh?

Need I say what happened after the game and helping my friend-Caregiver make his dinner?I think NOT!...

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 1, 2012 4:00 AM EDT

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Mood:  d'oh

With the lottery hitting a record jackpot this week I have come to realize today the only thing I need is a DRANO ISLAND!!

I don't know what it is with treatment day anymore but its almost like some are lurking in the shadows waiting for Hell-In-A-Jug day then as soon as it gets here WHAM! lets hit her with some stress! I also believe some might even find fun in playing along. Not sure but its starting to become very annoying which is why I need "Drano Island" along with a helicopter awaiting me. At least I could be at peace and relax the next day while enduring the liquid nightmare hangover. Some could be tired of reading about my weekly nightmare but then again maybe you personally haven't had a delicious warm salt water treatment of your own. No worries! I have plenty here for everyone! Hahahahaha!

Oreo and Littleblue sure have been loving this weather and playing outside however things are about to once again change with more rain. GEES! Just when the ground was finally dry so looks like they will be taking a break from outdoor fun and instead have to be happy with short walks to the park across the street. Oreo is doing much, much better with his seizures. He still gets them from time to time so its important to keep stress at the house to a minimum. I think we both could really benefit from it! Amen.

I have a hunch this will be a very low key weekend since I am still dealing with the same spinal pain that now is rotating itself not just to the front but back of my leg. My right hip is taking a brutal beating compromising for my left leg. I have been a good patient though taking my medication and keeping my leg elevated and warm so it continues to get good blood flow. The last scan didn't show any blood flow problems or clots so that makes me and my specialists very happy however since this is a progressive problem it will get worse. I am blessed the other nightmares found on my catscan are in the first stages so for now I continue to keep my attitude in check and fight going strong! Its been tough sleeping in the same position with my leg hanging over either the recliner or my couchbed. At least I am starting on a routine with the recliner first then I move over to the couch before going to sleep.

A dear fellow GP friend of mine named Jennifer sent me a really, really funny and cute card about doctors today as well a beautiful bouquet of my favorite flower-sunflowers in various colors! Thank you so much Jennifer it was a huge surprise and you certainly had the right flower, love them! Its so nice to have my GP family and all their inspiration that helps to keep me motivated. Now I can wake up next to my couchbed and look at the colorful sunflowers and the best part is they smell great too!

Well off to deal with treatment and the horrible hangover aftermath. This photo was too funny not to share but instead of alcohol I definitely think far GREATER stories can be shared over a few glasses of Drano. Hahahahaha! By the way a salad sounds amazing! Eating it sure beats me constantly having to juice and drink it. Amen.

CHEERS to a better tomorrow!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

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Mood:  sharp

"Money does not change people. It only unmasks them." If a person is naturally selfish, arrogant or greedy, the money brings that out, that is all.

There's a fine line in the sand between "making a lot of money" and "being greedy." Where is that line? It's around the point when you start to sacrifice yourself and your family all for a dollar. It's around the point when you start to throw away your morals and ethics for a dollar. When you lose sight of everything including common sense is when you are in real trouble. Aside from greed the bad karma that follows is bound to get you also in trouble.

I have seen and personally met people through out my life that do well and then those who don't do well when coming into money whether by inheritance or a successful business venture. I have also seen truly good genuine people change into someone that I don't think they even recognize in the mirror all because of money. Its sad when you think about those who suffer in the world but still have the heart to reach out to others who also suffer then you have those who live high off the pig that gain nothing but inhumanity by the almighty dollar. Someone told me today that those who reach a high financial statue should be set a limit via through the government when their income meets expectations and forced to donate a small percentage to an organization helping others who are less fortunate. I agree. I also personally feel that the individual should be told to take one full day once a month working along side a disabled and less fortunate person unlike themselves so they can appreciate where their money is going. This will also humble any individual who doesn't know the true meaning of suffering. Amen.

Sure. These are wonderful ideas but this is the real world where such a thing would never happen.

I woke up around 2:30pm today feeling extremely dizzy and cold. This could only to me mean one thing. Either my blood pressure was once again running a bit too low or it is my blood sugar. I carefully got my leg up and moved it off the couch then stumbled into the kitchen to test my blood sugar level. Sure enough! way, way too low and no wonder I am feeling horrible. The sugar rush begins once again so between candy, glucose tablets and gel I was finally able to get my sugar level back up to a safer range.

The weather has been picture perfect the past few days and I sure wish it could stay this way all year. 68-70 degrees is perfect! The park in front of my home has been quite busy with walkers, bikers and then those just enjoying some time in the sun. Me and my friend-Caregiver have been doing our best to get out and keep my spine from locking up. Same goes with my leg so its been a toss up between the ole cane and wheelchair. We both came upon the most sweetest thing in the world walking around the park when an elderly couple was sitting on the park bench as the husband was reading a book to his wife. We both couldn't help but smile from ear to ear. Its rare moments like this in life when one realizes the small things that matter the most. In a world where you meet and see thousands of people it only takes one instant to truly touch your heart.

I finally have all my specialist appointments lined up for next week as well a few more tests. Sure, there will be no surgery in my future but its important my doctors stay in close communication with my overall care. I "thought" Drano would be placed on further hold with everything that is going on but once again that quickly came to an end as I was advised to start treatment late this afternoon. My Gastroenterologist doesn't need any more complications nor hurdles to jump so its better to be safe right now so unfortunately I had a date with Mr. Hell-In-A-Jug this evening. WHEW! If spinal pain and a numb leg isn't enough imagine the pain after treatment and the intestinal inflammation that follows. Ready or not Drano here I come!

With all the craziness and changes going on around me the mail brought a smile in a package today. One of my dear friends in Florida sent me another inspirational ocean rock to add to my collection. This one was perfect and is called, "Expect Miracles" along with a beautiful stone plaque to place near my Bible in the living room. Thank you so much Arline, you made my day!

My friend-Caregiver has been put through the ringer lately as he continues dealing with changes that have been brought on by helping me out. What those who are healthy fail to understand are the responsibilities that are placed upon a Caregiver. He doesn't get paid nor asks for any award but what he gave up in his life not because he was asked nor told but because he willingly stepped up to the plate seems not only to me but many others certainly unfair. He gave up his house in order to help with mine. He gave up a recent promotion with the Army in order to help me out. He did a shift change in order to be here for me so I am not alone while enduring treatments and could go with me to my doctors appointments. To anyone with a heart any person who puts their life on hold because they want to help someone sick or disabled is a hero. Instead he has been through hell and back all in the name of support. Just sad isn't it?

If I had the energy instead of just spreading awareness for Gastroparesis maybe I should also focus on raising money for the Caregivers and those who put their heart before their wallet. Amen. Instead I can only hope that either I hit the lottery or others who want to help step forward. Not because they have to but because much like myself they too have a heart. Amen.

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT

Updated: March 30, 2012 5:13 PM EDT

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Mood:  rushed

Through out my eight year GP journey I have always maintained the strength to continue being a fighter. This week I have learned even through the worst part of the journey one must continue looking for the silver lining among the clouds.

Me-Aren't you tired of my body going against me yet?

Friend-Yeah sometimes but its not your fault and it will never cause me to leave or walk away from our friendship. I will always be by your side no matter what!

Me-I am glad you are here for me. I no longer feel nor will I ever be alone.

Friend-You will never be alone. We are all in this together. You have me and so many other friends in this world who truly care and will fight to help keep you safe.

Friend-Always remember I want to be here. I am glad to be here for you.

Me-I am fortunate to have you and the others to help keep my faith strong and my head on straight!

9:30am and UP with the PAIN. Every other hour cat naps are for the cats but my kittygang are literally now getting more sleep than I am, hahahahaha! My friend-Caregiver had to help move my leg in order to stand since I can't feel from my knee up. We decided today to move the wheelchair out of the back of my car into the living room this way when my leg goes numb I can at least lean against the wheelchair to stand back up. My doctors today said it is from the chronic and progressive nerve damage in my spine. The lower part of my lumbar is extremely damaged which has my sciatica nerve trapped. That nerve is wrapped around and goes down the front of my leg which explains the symptoms over the past few weeks going from A-Z. Bad news of the day #1.

My Gastroenterology and his assistant went over all the hospital reports as well catscan and tests. I got a call at 10am and was told I need to see a Nephrologist for my kidneys, family doctor for pain-inflammation medication, Oncologist/Hematologist for lymph nodes and my GYN-Surgeon. Hmmmm?...I was kinda confused on the last part but figured it might just had been an error so after I got off the phone I called my family doctor who worked me into their schedule at 3:30pm. Thankfully once I got up and moved around for an hour my left leg woke up enough to lay back down and sleep. My cell phone alarm went off at 3pm which was long enough to get dressed and for my friend-Caregiver to do some house chores before heading to the first doctors appointment. Since they literally worked me into their schedule I got back to a room within five minutes. My doctor looked at the emergency room visits and said, "There are quite a few serious chronic issues going on inside your body. We are going to have to take things one at a time." An hour later I was given a list of things to do and other specialists to see but luckily I am already one step ahead! I was also given some strong medication to hopefully ease up some of the nasty inflammation going on around my organs. What did surprise us was finding out the catscan at the hospital showed a very enlarged right ovary. I don't remember being told this nor did my friend-Caregiver. Hmmmm....This now made perfect sense why my Gastroenterologist advised I see my GYN-Surgeon who performed my last surgery with my main surgeon. GEES! Something else? Don't I have enough on my plate?

My doctor totally understood the concern with my kidneys not functioning properly although the key is I don't have any infections going on with my kidneys. The problem I have is once again with nerve damage which allows my organs much like my kidneys to function properly. After speaking to a few other specialists of mine the past few days I agreed with my doctor that there isn't anything they can do and I am fortunate everything that was found by accident on the catscan is in the "beginning stages." WHEW! They can't nor will anyone do any type of surgery. My friend-Caregiver said, "If they found a bullet inside you right now they still won't do surgery." Very, very true because my chances of coming out of the surgery room are very slim and recovering from surgery even worse. My doctors decided that right now I need to understand they can't repair damaged nerves that are causing my organs to not work properly so honestly whats the sense of adding another specialist? If I develop a kidney infection or infections that is a different story but even a Nephrologist can't restart damaged and dying nerves.

 In between leaving one doctors appointment and heading straight to another we stopped by the pharmacy to drop off my prescriptions. I also called my GYN-Surgeon and they scheduled a ultrasound for next week to look at my problem ovary. This is the same ovary they had horrible problems with during my last nightmare surgery. Will they do anything with the ovary even after more testing? 95%-No. It is important to my other specialists to get the scan done in order to keep them updated so they can all work together with my care and managing the pain? Yes. My Oncologist-Hematologist will be gathering all the information he needs and I will be seeing him also next week. I am glad to divide up all these doctor visits over a two week period seeing I am already mentally and physically tired! My other doctors appointment today went as expected. My friend-Caregiver even said on our way out of my doctors office that sometimes you just feel better confirming what you already know to be true. Story of my life! Hahahaha!

Today after finding out that although I have a lot of nasty things going on inside my body at least things are in the beginning stages. As far as my spine is concerned the damage is already done. My specialists said it will progress but I have already come to the understanding two weeks ago when this all started that I can live with it. If it wasn't for my spine shifting then causing severe pain and numbness in my leg I would had never had the catscan done at the hospital. I would had never found out the other problems going on inside my body until it might had been too late.

Today I found my silver lining once again among the clouds. Amen.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: March 29, 2012 3:29 AM EDT

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Mood:  hug me

Even after setting my cell phone alarm with three reminders there was no need because I didn't get much sleep. I was up every other hour. My friend-Caregiver said, "You look beat but I guess things could be worse and you not being able to get any sleep but at least you are getting a bit here and there." I agree although I am mentally and physically beat!

Its been a week since my spine decided to shift and POOF! things forever changed. This also means things have forever changed with what my life used to be like including normal daily activities. Forget that new bike to ride this spring and fall. Forget wearing all the cute spring and summer sandals with any sort of heel. Forget having a 'me' day playing my own manicurist. Forget putting on my own shoes without finding a creative way to put them on myself. Now taking a shower and shaving my legs is a huge feat! I was told by my Neurosurgeon/Neurologist that the damage to my spine is done. They can not help nor fix the problem. The numbness that started at the top of my left leg has extended to my knee. There are times I am finding myself having to pick my leg up from the nerves dying but guess what? Deal with it! I only say this because things are not going to change and either I cry and act like a big baby or suck it up and act like a big girl! I chose the latter of the two. Hahahahaha! My friend-Caregiver is even getting a bit creative in order to help me sleep on the couchbed and recliner. Since the spinal damage is now predominately worse on the left side I must hang my hip and left leg over the couch or chair in order to ease the sharp nerve pain. This involves using a step stool with two chairs for elevating my hip/leg or using a chair and tube socks tied to create a sling to rest my leg. Maybe we are onto our own self home medical equipment store! Hahahaha!

I am still playing catch up today from not being able to contact my specialists yesterday regarding new findings during the hospital emergency room visits over the past week. With 5 possible specialists to handle the new connected GP problems they are also trying to figure out who is best suited to take things over right now then who to pass me back onto. Its like playing musical medical chairs GP-STYLE! Since my intestines don't work without weekly treatments its still important to force flush them out so I don't perforate a hole in my intestines. Doctor #1 advised me today that I must continue treatment even if I can just do three to four glasses one day and two the next day on top of a handful of over the counter medications to keep me out of trouble. Since my Idiopathic Gastroparesis is clearly to blame for my new problems as it continues to progress there is nothing more they can do for my kidneys that are not working properly. I had a hunch when drinking decaf coffee at 2pm and not passing it until 2am something wasn't quite right. Guess what? It isn't and my gut once again was correct.

My Oncologist/Hematologist has the job of taking over my troubled lymph nodes-two different sets that are working against me which are connected and related to those who have Lymphoma/Leukemia. My other specialists will not touch this new problem area and rightfully so until my Oncologist/Hematologist passes my care back to them. Not that I don't blame them. Its called, "Liability." Most feel over 14 specialists is a lot or too many but after many years it is proof that Gastroparesis invades various organs as it continues its path of destruction. Each specialist has an organ that he/she manages and treats when symptoms arise. They all work as a team and today they worked once again very quickly as they exchange notes and stay on top of things. My Psychologist will also be helping to continue keeping my attitude in check and spirits high in order to not allow this new list of problems to suck me down a never ending hole. Amen.

Me and my friend-Caregiver did discuss limits to what I 'want' to be told. I have my boundaries set in sand that will be discussed over the next month with my specialists. I always do well 'knowing' but at this point surgery is out of the question so is any form of chemo or radiation if ever needed because my immune system is already extremely damaged and compromised by years of Idiopathic Gastroparesis. Once again I was told, "No ER surgical team will operate on you because you are too high of a risk in not making it through a surgery. The hospital team wasn't comfortable. Your own surgeons are not comfortable. Your other specialists are not comfortable." They are more than ready to help me with pain management but my philosophy is if I mask the pain then how the heck will I know when to head back to the hospital? POINT TAKEN! So I have decided to suck it up and deal with the pain. So far on a scale of 1-10 it has stayed on a steady 8. Thank goodness for having a high tolerance of pain!

New problems mean new challenges. The new diet has been tough and I was never one for yogurt so my friend-Caregiver picked up some new frozen yogurt flavors today. The masks are hard to get used to and I sometimes forget to put one on before I walk outside but keeping my immune system safe is a must! Same with the darn cane that is already hurting the palm of my hand. If I could have a house that is one level with an open floor plan and the washer/dryer upstairs things would also be a million times easier. Little things you realize are important but only after life changes and you are faced with a new set of medical rules.

"Its during our darkest moments that we must focus to see the light."

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT

Updated: March 28, 2012 3:24 AM EDT

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Mood:  blue

I am so so so so so so so so tired of the stress!

Once again I wake up to more stress when what I really needed to do was wake up, contact my three specialists and focus on my life. Instead dumb me once again allows others get to me and POOF! I am wasting precious and valuable time arguing on topics that will never, ever get resolved. The dumbest part is I continue to 'hope' people will change but guess what? People only change when they want to change. 

DUH ON ME!

Not that I shouldn't already know this so I am still in the learning process. Hahahahaha! Not funny the past four hours dealing with stress but even not funnier when I just contacted one specialist who clearly asked, "Why didn't you contact me earlier?" Once again my fault because I allow the stress from others to get to me.

A note to myself, "Do yourself a huge favor and remove yourself from the situation and stress. Don't look back. Don't think back and just move full steam ahead. You have only one life and this stress could possibly cause you further complications and progress the monster medical nightmare inside. Do yourself the one and only best thing you could ever do which is walk away. WALK AWAY."

So now I must listen and take advice from dear friends who do not want to see me any further stressed out and instead see me focus on my health and living the best life I can right now. I agree.

This blog like others who blog or write books, newspaper articles, etc serves as a way for me to release tension, stress and learn from mistakes. Thank you blog for allowing me to do so. Needless to say if life was perfect I wouldn't have the need to release stress but instead could focus on finding a bit of humor in a bad medical situation. Amen.

Well I chalk this day up as a complete waste and hoping my body will forgive me for putting it once again through hell and back when all it really needed today was TLC.

Posted by GastroparesisAwarenessCampaignOrg. at 4:45 PM EDT

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Mood:  sad

I literally ate my last words with a dear friend of mine last night by saying, "If this pain continues another day I will be right back in the hospital." Not only did I jinx myself but it came true.

Around midnight the pain got unbearable and I hit my limit. I contacted my friend-Caregiver and they were able to use some personal time from work in order to come home and take me up to the ER. The ride in the car was horrible and I couldn't get comfortable. I tend to go with my gut and it has never yet to fail me. At least the hospital isn't too far away so once my friend-Caregiver pulled up to the driveway I grabbed my cane and out the door we went.

This surely seemed like a full moon night because luck was not on my side. They took me back within five minutes into a room and started an IV line and fluids. The nurse went over my medical history and prior surgeries. They said, "Boy, do you have some bad luck!" Hahahaha! No lie there! Once they took my vitals and six vials of blood the doctor came into the room. The pain is now on day five and he was very glad I came up to the hospital. The next part of the examination started to turn for the worst. I literally was shaking and trembling in the hospital bed. My friend-Caregiver now became WIDE AWAKE when I was told I will most likely end up in surgery today. It seems I have something really bad going wrong. Not only that but once the tests came back and my catscan all the years of family comparing my Idiopathic Gastroparesis to those with cancer literally got rammed down my throat. I always couldn't understand why people compared my condition to cancer. Not only is it a disgrace to me but the person I am being compared to because every medical condition is totally different. A midnight trip to the ER ended up going into the morning hours. I like to say it was the second worst experience since being diagnosed over the last seven years. The worst experience was after my last surgery when everything that could possibly go wrong went wrong.

I was only released because they felt at this point their surgical team could not perform surgery due to problems not being able to be fixed. Both of my kidneys are equally losing function and came up on the catscan not looking to be in the best of shape. I had worse news after being told there were lymph node problems with two different types of lymph nodes that only those with Lymphoma/Leukemia get so instead of surgery I was directed to go to my specialists Monday. Sigh... The pain I was told would not get any better and most likely worse. I was given various options to help 'maybe' control things but it wasn't a promise and it could make my Idiopathic Gastroparesis worse so I decided to just grin and bear it. Sigh... The spinal issues? Least of my worries now. The Hell-In-A-Jug treatments? On hold and another least of my worries. So after getting back to the house which I was extremely thankful for after many prayers in the emergency room it was already 8am. Not only was I mentally and physically drained but so was my friend-Caregiver.

There is a lot going on as I face a stressful week ahead deciding what I do and do not want to be told. I always said, "I do better knowing than not knowing" but even I am not sure if I want to find out more about this monster. The kidney problems are a result of my Gastroparesis progressing. The lymph node issues are a result also of my Gastroparesis progressing and causing further complications which had the catscan picking up posterior intestinal and abdominal problems. My friend-Caregiver was advised to watch me very carefully over the next 24 hours and any signs of vomiting, nausea, bleeding, worsening of pain or fever to take me back up to the hospital. Not that this isn't hell enough and stressful enough to deal with but now add some disheartening communication from people who know my family.

Here We Go Again...

To some this isn't the place to do an apology but since there are so many people involved right now I wanted to personally apologize for everyones actions. Over the past four days I have been flagged regarding some disturbing behavior. I do understand those who are contacting me are very concerned that the stress will jeopardize my current condition as they are looking out for my best interest. Some feel it is their responsibility to watch my back as they continue showing their concern regarding actions by my family. I personally do not condone this behavior and completely understand every ones concerns. It is also concerning my specialists who work extremely hard keeping me out of trouble and alive.

My friend-Caregivers family has taken it upon himself to step up and help me out. It is a very noble thing for anyone to do. Those who interfere with the mental and physical health of a person who is sick is not only placing stress on the patient, Caregiver but also the patients specialists. The stress is causing me further harm. I do not agree with anyone who feels causing stress is justified no matter what the circumstances. This has continued for a very long time and now with my condition progressing it has made others step up to the plate. Some of the actions are being observed by others who find it very disturbing. What is harming me is now provoking them.

I don't understand why anyone especially family would use others as a scapegoat for their lack of support for another member who is sick. Some of the things I am being told are just down right cruel and inhumane.

"How do you feel about your son living with a woman that is so sick that she can't get out of bed." 

 Instead of being supportive I am now dealing with guess what? More stress.

I want to personally apologize to those who have been put into the middle of lack of family support issues that should have never been put in the middle in the first place. I want to apologize to my friend-Caregiver and his family. The biggest problem I have with this ridiculous behavior is once again not only putting me down but anyone else who is chronic or terminally ill and has kids.

Lesson: Do not act like this because the universe does not tolerate taunting, tormenting or hurting those who are already down and are sick. Again I want to sincerely apologize. Although I can not stop the actions of others sadly I feel this behavior will never stop as my condition progresses. Surely if someone can take the time to be inhumane they can take additional time to prove to others they are human.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: March 26, 2012 5:36 PM EDT

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