Mood:  quizzical

I am rotating my sleep with the seasons but mostly the sun. Now we are thinking of getting better room darkening curtains for the large kitchen window so I don't wake up with Mr. Sunshine beaming into the dining room and living room. At least we avoided more rain so far this week although come summer it tends to be very dry.

My friend-Caregiver is getting their fair share this week of yard chores and projects. Its nice having a home and a large yard but oh the work that it involves! I remember when I lived in a condo and then a townhouse. Sure, I don't miss the feeling of no privacy but I do miss less work that has to be done and yard maintenance. Maybe we all need to have large houses when we are in our 20's when we have the energy to keep up with everything then downsize in our 30's and 40's. Sure makes perfect sense to me! Although my friend-Caregiver had a house of his own it didn't have near as large of a yard as my mine. Now since it is time to play catch up with the landscaping we are in need of new garden tools. Just when we think we have everything we need one more tool needs to be bought. Its been a game staying on top of everything before the truck load of mulch is delivered next month. YIKES! Boy is he in for a TREAT! Hahahahaha! I can't wait to see his face when the truck backs up and drops the mulch on the driveway. Its a good thing the yard just needs a few last minute things done before May is finally here because there is only a few weeks left of April.

THANK GOODNESS!

I am ready to kiss this month good riddance and off to better days of May. Too much has been going on this month. Too much negativity and not enough positive makes for both of us in a hurry to put the past behind us. I won't be looking forward to the heat one bit but I have plenty of things going on over the next four months to keep me extremely busy! My friend-Caregivers Son will be starting kindergarten this summer so many changes ahead on the home front. Its important to instill values and life lessons early. Its important for children to learn early on that although life might present you physical challenges you can still overcome and adapt. Its all about working around disabilities and not letting them fully work against you. Sure, 1 out of every 2 people in the world have some type of disability so indeed there are many children in the world who are raised with someone who is sick but as adults its our important job to teach children about discrimination. Its going to be a learning process for all of us but his Son is very smart for his age and fully aware of right from wrong.

Since the ole treatments continue to present a bit of a challenge my wonderful Gastroenterologist is always on the look out for me regarding new drugs on the market. Last week they let me know of a new medication just released on the market to possibly "try." The only problem is instead of drinking the solution you inject it. YIKES! I have been looking into the new drug over the past week and have my concerns with the side effects and other unknown reactions. The other problem is once again its not really meant for my unique medical condition. They are only hoping it "might" help me a bit so I don't have to consume the toxic Drano on a weekly basis but instead maybe every other week, etc. Another problem is this medication has to be self injected or by someone else in the home every other day. DOUBLE YIKES!! I have had injections in my stomach years ago and trust me it hurt like HECK! I didn't like it then and I sure don't miss it now but once again I would be facing stomach injections every other day?!! Hmmmm....I have researched the new drug and even spoke to my main Pharmacist but even he has a few reservations and concerns. Most importantly is the cardiac side effects and possible reactions. Since the drug is rapidly absorbed and works in a matter of 30 minutes it can also cause sudden bowel obstructions and perforations. TRIPLE YIKES!!! Yes, it just gets scarier by the moment but I couldn't say no to my doctor and his staff who have become like a second family and work endlessly to find alternatives to the hellish Drano jug. Since my doctor had to submit a medical necessity letter for the insurance company and drug manufacturer the medication will not be ready until tomorrow. Will I give it a try? I'm honestly not sure yet. This evening I am leaning towards 70% no and 30% yes. So far I am the first of the GP guinea pigs in the same boat as me to step up to the plate. Remember, I only know of a handful of those who endure weekly treatments for paralyzed intestines and out of all of us I am the only one taking Trilyte while the others have to consume nasty mag-citrate. I feel the spotlight heat on me!

When it comes to my health I take things very seriously! Risks VS benefits is the name of the game. With this new proposition it has not only myself but other fellow GP friends of mine questioning if the risks are worth it?...Its always a gamble with GP and sometimes you win but most of the time you lose...

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 19, 2012 3:30 AM EDT

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Mood:  bright

"Not trying to solve things is sometimes the best way to solve things. The highest form of listening is to just stand back, look the person in the eye and not say anything at all." -Penn

Its been nothing but peace, quiet and zero stress lately. I have been tip toeing around waiting for the winds of change but so far so good. When you stand back and come to realize what might be causing you stress the results might come as a shock. Sometimes it can be very humbling and sad. Other times you might find yourself chuckling and saying, "GEES! Why didn't I stop things before letting them escalate?" Regardless life is far too short and if you can't create a bit of serenity in your life then you are clearly not living. Life is meant to enjoy not walking around on eggshells or grinding your teeth down to the gums. Its the littlest things in life that money can't buy that are the most enjoyable. Its the hardest lessons in life that bring you the most wisdom.

With rocky roads comes solid ground and I am hoping to continue paving the way to a better life. One day at a time. Some say it will take a year to be back on track with life and if so I will learn the patience needed to get there. I can't change tomorrow. I can only live for today.

I came across two totally different stories this past week. Funny how the news can tell plenty of negative and sad stories then have one amazing story. To me both run parallel of each other but each have a valuable lesson for everyone to learn.

"We can't help everyone, but everyone can help someone."

Tiger Woods Won't Help Half-Siblings?

Tiger Wood's half-siblings say their calls for help from the golf superstar have fallen on deaf ears.

Woods' older half-sibling Kevin Woods has been battling multiple sclerosis and is now confined to a wheelchair. He needs a caretaker and is in danger of losing his San Jose home. Kevin's brother Earl Woods Jr. told ESPN's Rick Reilly that calls to their famous sibling have gone unreturned.

"I leave messages. I leave updates on Kevin, but for whatever reason I don't get a response. … Kevin loves Tiger. A call from Tiger would really pump Kevin up. When he doesn't call, it just makes him feel worse," Earl Woods Jr. said.

Woods' rep did not immediately respond to ABCNews.com's request for comment.

Earl Woods Jr., Kevin Woods, and their sister Royce, share the same father, Earl Woods, as Tiger. They are the offspring of Earl Woods' first marriage to Barbara Gary.

The Woods siblings remained close with their half-brother until he turned "about 15 or 16," and his star started to rise, Earl Woods Jr. said. Since their father's death in 2006, the half-siblings have been unable to contact Woods at all. No one seems to know the reason for the rift.

Now Kevin Woods needs his famous brother's help, Earl Woods Jr. says.

"Nobody's asking for money here, but [a caregiver] really would be nice for Kevin. It would make Kevin comfortable. He wouldn't have to leave his house. … But we'd at least like to be able to find out how Tiger is, to find out if he's OK, and to let him know if we're OK," Earl Woods Jr. told Reilly.

Barbara Gary Woods, Earl Woods' first wife, told Reilly, "I'm very disappointed in Tiger. Before he got all famous, they were in touch a lot."

Earl Woods Jr. was more vehement.

"I'd like to [slap] Tiger, wake him up. I'd like to say, 'Don't come knocking on the door when you need a bone-marrow transplant.' To see this is the response we get? Maybe when you see the world like he does, you don't see what other people are going through. But, seriously? You've got problems with your knee? That's nothing compared to what Kevin is going through. Nothing," he said.

Heroic Man Dies Saving Child from Powerful Riptide

A heroic 65-year-old man jumped directly into a powerful Florida riptide and rescued a little girl before suffering a "cardiac event" in the water that led to his death.

Alan Hall went to Honeymoon Island, Fla. Sunday to spend the day relaxing with his wife and daughter, but the day quickly took a dramatic turn.

While taking a walk with his wife, Eileen, to collect seashells, the couple spotted three children playing near the shoreline as a powerful current began to build.

"[My dad] said, 'I hope somebody's watching them. That's a pretty strong current,'" Julie Hall recounted.

Seconds later, the children started screaming for help. Their parents rushed into the water and were each able to pull a child to safety, but a third child, a little girl, was still in harms way in the rough water. Alan Hall jumped into the tide without hesitating, Julie Hall said.

"My dad was able to push Ruby out of the way and towards the shore, where it was safe," said Julie Hall.

Riptides, also known as rip currents, are extremely dangerous channels of discolored water that can form unexpectedly and pull swimmers away from the beach.

After pushing the child to safety, Alan Hall's heart stopped. Nearby boaters managed to get him back to shore, where a crowd was gathering.

His wife began performing CPR immediately but Alan Hall was not breathing and did not have a pulse.

"My mom said one of the things she remembers so strongly is the circle of people around him that all started praying for him," Julie Hall said. "That's something that has stuck with her."

Emergency medics arrived and attempted to resuscitate Hall, but they were unsuccessful. He was transported to a local hospital where he was pronounced dead.

Medical examiners have not yet released a cause of death, but Julie Hall said her father suffered from a "cardiac event."

A spokeswoman from the Florida Department of Environmental Protection said that no lifeguards were on the section of the beach because it is not a designated swimming area. Other parts of Honeymoon Island State Park are open for swimming but only have seasonal lifeguards on duty from Memorial Day to Labor Day.

Five-year-old Ruby, the child Alan Hall saved, traveled to the hospital with her parents and siblings to thank the Halls. The family had been on vacation in Florida, visiting from Ohio.

"They were so distraught and they were so guilty," Julie Hall said. "We told them not to feel guilty because if my dad had known the outcome, he would have done it anyway. That's how he lived his life. He would have done it regardless. He was one of those people that actually lived what he preached."

Hall said her recently-retired parents moved to the Land O'Lakes area of Florida from Connecticut not long ago. Her mother is a retired nurse and Alan Hall most recently worked in sales for Frito Lay.

The couple was getting ready to celebrate their 42nd wedding anniversary. Hall said her mother is doing "as good as can be expected."

"I think because she's still in shock, she's okay right now," Hall said. "She's strong. She's tough."

Hall said her family is extremely proud of her father, and hopes the example he set will move others to perform acts of kindness and caring for strangers.

"He wouldn't have done it to be a hero, but he's probably grinning somewhere," Hall said.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 18, 2012 3:04 AM EDT

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Mood:  don't ask

Its one of those days...Add Drano aka Hell-In-A-Jug to the mix and double whammy! Sara, can you print out each page over the past two years that I have consumed Drano? Hmmm...If you do can you please let me know how many jugs I am up to now so I don't have to keep guessing anymore? Hee,hee,hee,hee...The wonderful part of being a tech/computer geek is knowing how to utilize IP addresses from the web or when you get anonymous messages sent to your cell phone but luckily my illness never took away from my IQ.

So you know the drill once again because treatment day means BLAH day! Line up the ole glasses, get the red Hawaiian punch ready to do shots then chug away...Hit me fast, hit me slow, anymore I don't know which way it will go. I feel for my dear fellow GP friend Jennifer who endures the ole Mag-Citrate on a weekly basis. The fun never ends no matter if its colonoscopy/surgical prep aka Drano or glass bottles of fun-Mag/Citrate. Some how though I tend to believe only the strong get handed down paralyzed intestines. At least its good to know I am not alone. Jennifer is not alone. Jeannie is not alone. AnnMarie is not alone. We are only a handful of those who endure torturous weekly treatments but hopefully in the future those who are diagnosed with Gastroparesis will have other options besides consuming liquid dynamite. Amen!

By early evening I was BEAT but one must keep moving. Littleblue had so much outdoor time in between playing in the backyard and taking walks she was out early for the count! Bear kitty is in this picture snuggling by her head but tends to blend in with the couch, hahahahaha! My friend-Caregiver kept busy relocating the plum tree in the backyard. Its a good thing we decided to move it now seeing the roots were almost impossible to dig up and replant but after an hour the tree finally has a new home located next to the peach tree. Maybe if I get a few more fruit trees I can just go in the backyard and pick my own fruits to juice. Nah, I tend to agree by saying the only ones who might end up enjoying the fruit in a few months will be the wildlife. I can only imagine the deer in the backyard come early June when the plums and peaches will be ready to pick. At least I will be able to catch some great photo opportunities!

With a specialist-free week I honestly don't know what to do with myself. The only one with a doctors appointment this week is my friend-Caregiver. Better him this time than me! I am sure I can find better things to do with my time then visiting my doctors and getting blood taken, scans done, etc. Hopefully this much cooler weather will hang around long enough till the end of the week that way I can get the new patio furniture out and spend some time r e l a x i n g...

The only other thing this week I have hanging up in the air is getting a new hair style. My hair has royally suffered by the hands of Drano treatments and Gastroparesis. I have been taking a poll asking friends if I should keep my hair long or cross my fingers it starts growing back instead of continuing to come out OR go for it and get a new style. The winning results so far: NO WAY! I love your long hair, KEEP IT!

I guess all I can say to that is, "Time will tell" or my hair will first. HA!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 18, 2012 1:46 AM EDT

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Mood:  happy

Today marks five years since my Crystalblue Angel got called far too soon to Heaven. I still miss my buddy, shadow and Angel each and every day. I miss seeing her bright blue eyes that greeted me when I woke up and when I went to bed. Crystalblue just like Littleblue was my sleeping buddy laying right near my feet every night. Fur kid dedication is something that can never be replaced. I am sure Oreo still misses his best friend and buddy. Its hard to lose a fur kid and that void never leaves your heart. I take great faith in knowing my Crystalblue Angel waits for us in Heaven but its still hard not having her by my side. I am sure the rest of the fur gang agree.

Today has been a very, very relaxing day. No stress, no drama just peace and quiet. No Drano treatment either due to low iron and blood sugar levels coming back on a few lab tests. No worries though, once I get my levels back up and take the necessary precautions I am hoping to be back on Drano track tomorrow. I am doing much better handling the spinal and intestinal pain. My specialists estimated it would take a few weeks to adapt to the new changes and they were once again right. I still use medical aids when needed but so far I continue to hold my own. My mind is strong and focused so there is no giving up anytime soon.

This coming week is the first in a long time I can say, "No doctor appointments or tests" WOOHOA! Finally I get a much needed break! How long will it take before my Gastroparesis strikes my organs again who knows but for the time being I am going to enjoy life! AMEN!! The fruit trees that got planted three years ago will finally be producing fruit in a few months. One of the trees will need to be replanted since it is not getting enough sunlight but the other tree already has tons of fruit buds. I assume that is because it is in direct sunlight so looks like we have a small project on our hands replanting the other tree this coming week. The animal gang at least got to run a bit in the backyard today since the past few days its been too muddy. Littleblue's new coat is almost fully grown back and she looks three times the size of Oreo. One would think Oreo is the puppy and Littleblue is the Mommy. Hahahahaha! We have to take Oreo to the vet sometime in the next few weeks since he started having problems hearing. Oreo will be 14 years old this year so since he is an older dog his hearing can start being affected by age. Oreo still keeps up with Littleblue who is only 3 years old. Hes still a puppy at heart!

Me and my friend-Caregiver have been utilizing the heck out of the DVR recorder this week since all the new shows have started. At least once we sit down to relax in the evening we can watch our favorite shows and fast forward through all the commercials. Whoever invented the DVR recorder one word, "Thank you!" With the summer months and heat just around the corner I am prepared to be stuck indoors since that it is the time of year when my seizures are the worst. Sunlight and heat are my triggers. I sure haven't miss the migraines/seizures the past six months from excessive sunlight but at least I know what I am facing. Hopefully I can keep all stress at a minimum so I don't make things worse for my head. Only time will tell but until then I am enjoying the head-free days the best I can!

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT

Updated: April 16, 2012 1:51 AM EDT

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Mood:  special

The old me would have hit the fan once I stepped into my car to only realize the key would turn but the engine would not. Ahhhh...the good ole days when you were young and dumb throwing a hissy fit over the littlest of things. Now much older and wiser than in my hay-day 20's after realizing my car wouldn't start I decided instead of hitting the fan to say, "Oh well. Its just a car. It happens."

WOW! I HAVE COME A VERY LONG WAY!

I made a few phone calls to the dealership to find out when they could possibly tow my vehicle into their shop. Next I made a call to my Dad seeing he retired from General Motors and if you have a problem with your car he can generally can tell you by listening to what is going on with the vehicle the exact problem. I did notice when I tried to turn the key over the interior lights were dim. So were the headlights. Hmmm...I had a good guess but decided to run it by my Dad first. Once he came over we both realized it was my battery which was low however after he took my car up to get the battery tested I didn't realize when a car sits the battery will sooner or later lose charge. The end result: Mr. Hummer needs driven more than two times a week and not sit in the garage so often.

CASE CLOSED.

Since my car needs to run on the road more often and not sleep so much in the garage I had my friend-Caregiver put his car in the garage and leave mine out to be driven. I didn't think we would get out of the house today (me anyways) since it is treatment day but I have laughed and now have come to the conclusion when I mention Drano aka Hell-In-A-Jug on my blog "DRANOARAZZI" comes knocking at my door. Just like the Paparazzi can ruin a celebrities day the "Dranoarazzi" can ruin a Drano day. Hahahahaha!

So once again -not like I shouldn't be used to it- treatment day must be pushed back due to unwanted drama and stress. Yes! the "Dranoarazzi" strikes again. One positive note-my car doesn't need a new battery and after my Dad was nice to come over and take a look at it we could at least enjoy the rest of the day. This was of course after the first half of my day was "DRANOARAZZIFIED!" Hahahahahaha!

Now onto the rest of my day...After thinking through everything regarding having more tests done due to complications with my Idiopathic Gastroparesis I have decided to not have more tests. Why? First of all I don't see the point of redoing tests that have been already done unless the end result will be a cure or treatment that works. Since I was told most likely they could not do anything since the issue with my kidneys is due to lack of electricity-nerves to make them function properly I don't see the point of putting myself through more medical stress. Honestly I just need a break and feel I am coming close to turning over a new leaf with my life. After many changes since fall of last year things are looking better in my personal life and I finally see a little light at the end of the tunnel. So I might not see one with my unique medical situation but I am still in a very good place with one word: ACCEPTANCE.

Later once we got back from running errands and enjoying a bit of the rain-free day I realized that everyone at some point in their lives have decided to play doctor without the degree. I have already run into a few of those in the city who have tried to play doctor with a nurses degree. One word: Annoying. After eight years if my team of 17 specialists including a new one recently added to the group-Nephrologist don't know what the heck they are doing then call me "Flo", "Kiss My Grits" and send me back to the diner. Hahahahaha! I just made that last part up but we both laughed and come on! it WAS FUNNY! In all actuality its sad and disturbing when those closest to you don't believe you are sick. It then starts to not only frustrate the person who is on the receiving end of such comments but also the treating doctors who work very hard and put their hearts into the care of their patients. If anyone believes they can do a better job than those who treat Gastroparesis and other connected problems need to wait until they get their degree and specialty before questioning and re-diagnosing someone.

Clearly I am not alone when it comes to this odd behavior seeing there are many, many people who have reached out to me since I started my blog over two years ago regarding family, friends and loved ones who do not believe they are sick. Even more odd its only limited to the conditions that are invisible. Not those that are visible to the naked eye. This includes more than just Gastroparesis but many other invisible chronic conditions. No. Gastroparesis isn't from constipation. Umm....?????-I had someone try to tell me that. Medical terms are given to the public from health care providers as a way to explain to others in terms they can understand. Dysmotility means=paralyzed. It means the intestines do not move. I don't know when we started using Trilyte which is a surgical and colonoscopy prep as a means for occasional constipation. If that is the case then WOW! MOVE OVER MILK OF MAGNESIA AND EX-LAX BECAUSE YOU GOT SOME STRONGGGGGGGG COMPETITION! Trilyte is used in my unique medical condition and situation because after surgery it was found as well on prior tests that my intestines and most of my GI organs no longer work. They do not move. They "look" great but the nerves have died therefore my organs no longer work/function properly. I assume maybe a garden hose might work better but clearly you can't do that so I must force a mixture of nasty ocean tasting stuff on a weekly basis to keep my intestines clear of obstructions. No one asks to be sick. No one surely would ask to drink this foul, nasty stuff but its called "Deal with it, accept it and hopefully it will continue keeping me out of trouble." Anyone who feels my doctors find a joy in making me drink this mixture on a weekly basis needs to re-evaluate their thinking.

So after a strange but typical "Dranoarazzi" day me and my friend-Caregiver finished up the great "Ghost Adventures" season 1 this evening. Its hard to believe its easier to convince people the paranormal exists but invisible medical conditions don't regardless of tests or surgeries that say they do...BOO!!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 16, 2012 1:06 AM EDT

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Mood:  lucky

Another week quickly comes and quickly goes...Today marks my last of many appointments this week with my specialists. I went to sleep earlier than usual this morning. 4am is early for me compared to my typical time between 6-7am. I have a few additional days of medication to finish up since they have me down from two to just one pill a day. If there was any slight sign of infection anywhere in my body it is surely gone by now however all the blood work so far has come back negative. I assume they still want me to finish everything as a precaution.

I see my new specialist today-Nephrologist. Their office is not too far from my home but since it is Friday and my appointment isn't until 4pm we decided to leave a bit early. Since I start back treatment again tomorrow there are quite a few errands we need to run before and after my doctors visit. The fur kids at least got to enjoy time in the backyard before we left since they are predicting rain to come in later this evening. Looks like this might be a rainy and warm weekend stuck home with Mr. Drano.

They gave me directions to the doctors office earlier this week however once we got off the exit they took us the wrong way. Thank goodness we were running a bit ahead of schedule and the work traffic wasn't bad yet. The office was very large and roomy. It reminded me of an open floor plan and since I have seen my fair share of doctors offices this one was white, bright and cheerful. Nice for a change! The office staff wasn't the unorganized group that was on the phone earlier this week as I found out that was the central scheduling office. No wonder they had me running circles to get into a new patient appointment and it all finally made perfect sense! I filled out some typical medical and insurance forms then within five minutes my doctors assistant called me back into a room. My other specialists had already faxed over all the test results and reports to the new Nephrologist.

Of course I had to once again leave a urine sample to check for changes since last week. Next they checked my vitals only to find out my low blood pressure was running a bit lower today. They had me sit, stand then sit again. Standing made my blood pressure lower which was a bit odd to them however I said, "Call me the special patient because my wiring is a bit off." They chuckled and then made a suggestion that I continue using a cane so I don't lose my balance with having such low blood pressure all the time. I am already one step ahead of them! The nurse was intrigued by my Idiopathic Gastroparesis and once my new Nephrologist came back into the room he also quickly became very interested in my past medical history. I have high expectations of this new doctor who must clearly work with the rest of my medical team. Smart? Yes. Informative? Yes. Compassionate? Yes. Could he possibly fit in with rest of my specialists? Yes.

After finishing up the remainder of my examination which included going over tests, office reports and lab work I got asked, "Have you ever traveled or visited any Latin countries?" I answered, "Yes, Panama when I was in my 20's." My doctor explained there is an insect known in the Latin countries that can cause central nervous system damaged upon being bit by the insect. He further said, "The symptoms can come on years later although I am not trying to scare you but since your Gastroparesis is Idiopathic and you clearly suffer from severe nerve damage this could be an avenue to further investigate." Wow! I wasn't scared at all but very impressed however it also seems my Oncologist/Hematologist was already one step ahead going down the same avenue two years ago when he ran extensive blood work looking into the same theory. Results from those tests? Negative. With one Grandparent who has kidney cancer the genetic factor does pose me with a risk of also developing kidney cancer however this isn't the case right now. Instead once again I was told things are happening due to a mechanical problem with nerves that control my organs. Not only is my Idiopathic Gastroparesis progressing but now taking with it my kidney function leaving other nerves severely damaged. Just how damaged? My kidneys are not emptying properly. My Nephrologist took a pen and piece of paper out then started explaining what was going on. The path from my kidneys all the way down to the final process of fluid elimination is disturbed due to severe nerve damage. My urine today continues to show red cells and blood although it doesn't mean I have an infection but it also has my lymph nodes in an uproar. I already have one lymph node monster my Oncologist/Hematologist is dealing with so it was a blessing to hear no connected problems/cancer with my kidneys however they are not functioning properly. They did suggest I have a few tests repeated and another blood profile done but in the end my doctor said he can not fix the problem with my kidneys and GI tract. He also said, "The extensive damage is done. Your condition has and will continue to progress. There is no treatment that will help in your unique situation. I don't foresee the cultures changing however your kidneys are not getting the proper nerve firing needed to function."

S I G H...

Once again I took the news with a smile because there is no need to get angry or upset. I pretty much figured there would be no quick fix or solution to the great kidney mystery. In fact there is no cure nor quick fix for any of my organs that are suffering horribly by the hands of my Idiopathic Gastroparesis. I was very, very impressed with my new doctor but question if the tests are really necessary since there will be no cure no matter what comes up. At this point I might need over the weekend to think things through and run them by my fellow GP friends. Its always better to get a few other opinions. My gut is 50/50 but I think everyone who suffers from Gastroparesis just wants relief, answers and a cure. Sadly most patients walk away without any of the three and instead must learn to live with constant new problems.

My Nephrologist stepped out of the room to make a few calls then check into a cat scan report from another specialist of mine. Once he returned back into the room familiar words began ringing in our ears, "We as specialists and surgeons can not heal damaged nerves. We can not fix damaged nerves. Technology is not far enough to allow us answers for you. Your case is very fascinating and intriguing because it all started from severe nerve damage and remains Idiopathic. The problem is your GI tract is paralyzed from top to bottom which includes all organs. It is not surprising your kidneys are also showing signs of problems because they are part of the digestive system. I would still like to run the tests ordered but in the end there isn't much I can do for you."

Hmmmm....Didn't me and my friend-Caregiver already figure out the end conclusion? I personally hit it right on the nail! I already know with Gastroparesis as well Parkinson's and other conditions caused by nerve damage there is no cure nor answers. Only temporary relief if even that is possible. Is that possible with my kidney situation? No. The entire path from my kidneys to the last step of filtering urine out of my body is permanently damaged. It is as he said, "One more annoying thing to deal with." AMEN! So after shaking hands and taking hospital orders for further testing I thanked my new doctor for a very insightful visit and reconfirming what I had already known. On the way out the nurse wished us both a great weekend and said, "If you need anything in the meantime please don't hesitate to call." My doctor also walked back out, handed me his card and said, "If you need to get in touch with me or have any problems with fever, rash, vomiting or extreme abdominal pain please contact me on my cell phone." Next time I get the same rash on my stomach I have been experiencing over the past year he wants me to take a photo and send it to the office. In his eyes it might hold a key to a few more answers to my great Idiopathic Gastroparesis mystery. I sure hope so because not only can it potentially help myself but many other GP patients with their great medical mysteries! Amen.

On our way home after running a few more errands my friend-Caregiver stopped and got some Chinese food and gave me the fortune cookie. I recall a family member telling others regarding my medical condition, "She just got dealt a bad hand of cards." I like to say its not the hand your dealt, its how you play them. Isn't life funny sometimes how it reminds you of your strengths and weaknesses even in the form of a fortune cookie?...

My fortune cookie read,

"Life is not a matter of holding good cards, but sometimes, playing a poor hand well."

AMEN!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 14, 2012 3:10 AM EDT

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Mood:  lucky

Someone asked me today, "Why don't you talk about things more often on the phone or in person regarding your medical situation?" My very honest answer, "After 8 years its like a broken record and even I like to take a break each day from GP life which is why I do one blog, once a day, vent how I feel and go on with the rest my life." Its not that I don't want to talk about it, I just don't do pity parties. I like my inner strength that has been built over the years. Its great to attend any doctors appointment and not literally have a melt down like most people would in my unique situation. I take my health very seriously and have high expectations from each one of my specialists. So far they have yet to let me down and have become a very strong support system.

Today I have one of two specialist appointments for the week. I made sure to schedule them once again towards the end of the week because most people would rather have a jump start on their weekend and not spend Friday in a doctors office. Not me though. I have Drano weekend to look forward to so the later in the week the better. Someone today made a comment to my friend-Caregiver that its crazy how someone can sleep until 3pm. Obviously the person who made that comment either A-Never experienced being truly sick B-Never knew what it was like to work third shift or C-Lived under a rock most of their lives. Hahahahaha! Seriously, who makes those type of comments even after reading my blog and who knows how many other blogs? I also was once again told that someone in my condition shouldn't be allowed to have children over my house. One word: HA! Are you serious and what type of person says such a thing? I tend to believe they needed a reality check and should had instead saved the side show comments and went with me to my Oncologist/Hematologist appointment this afternoon. They would had been awakened by the reality of one word: Life. There were many of those going through chemo today with their children by their side. I didn't see anyone saying they shouldn't have kids because they are sick or have to seek treatment. Instead it was a beautiful site called, "Caring."

One word to this individual: Support. Try it sometime for someone else instead of categorizing those who are sick and insisting its shameful for those who are ill to be allowed around children. Quite a few others around me are also wondering what is happening with society. What are people thinking? Answer: Twitter, Facebook and any other social networking site. They aren't thinking they are too busy typing. I always said I was born in the wrong era. Clearly back in the 30's is more my speed where people cared about people and not just about themselves. This blog is a way for me once a day to post about my life and a way for me to look back and reflect where I have been and be proud of where I am today.

How did my appointment turn out this afternoon? As expected but more! It was a very humbling experience not only for myself but also for my friend-Caregiver. He even found himself saying on the way home, "Your doctors aren't just doctors, they are like a second family. I have never seen doctors instead of shaking your hand actually reach out and give their patient a sincere hug. Until of course I met you. It still leaves me speechless." He not only likes my specialists but also has deep respect for each and every one of them. No miracles today. No cures. Just the facts and truth as medical technology allows. Some are meant for chemo and some are great prospects for treatment while others like myself are already doing harsh treatment on a weekly basis. It works although doesn't come without a host of side effects, some long term. I would never entertain the idea of chemo because I have far too many problems with my organs not functioning properly. What turned out to be an ER visit to make sure I didn't literally break my back in half or perforate a hole in my intestines turned out to be a blessing in disguise. So maybe other things were found by "accident" on tests done by the hospital but things are in early stages and very mild. I am hoping the same for my kidneys as I wrap up a very long week with a new specialist tomorrow.

After catching a few laughs with the nurse and my wonderful-multi talented Oncologist/Hematologist today he will still need for me to come back in three months. At least I will be able to give myself a much needed break. They will have to rescan and check my lymph nodes again for growth changes only as expected. I am ok with that because I never intended to be cured today. I only expected a great appointment and to learn more about my condition. Today answered many questions not just for myself but also for my doctors since we are a team. My other specialists will receive a report on today's visit from my Oncologist/Hematologist so they can continue connected the mysterious GP dots. I was given the "A-OK" to start back on the ole Drano aka Hell-In-A-Jug treatments this weekend seeing I sure don't need to become toxic. I was also told to finish up the new medication but always to remember, "If you can handle the pain without taken narcotics you will be much better off. We don't want to see you suffering but we don't want things to be made worse." This is exactly why "some" of us don't get to sleep until the wee hours of the morning because we are fighting pain and don't feel like making our conditions worse or becoming addicted to drugs.

Towards the end of my appointment my specialist was able to quickly answer questions regarding hair loss, nails not growing, low blood sugar and low blood pressure. I can take all the vitamins in the world but if your GI system can't properly digest or distribute them you are in theory wasting your time and money. I have taken the new vitamins for over a month and my hair has still yet to grow in a year and my nails keep breaking. If a normal person took what I have been taking they could be Rapunzel by now! Hahahaha! My doctors reply, "Expected. Your hair will continue coming out and not just due to treatments but mostly because of your Idiopathic Gastroparesis." Once again VALIDATION. The word I like most because it literally puts missing puzzle pieces together. Amen! As my specialist finished up the report for my doctors he mentioned key words, "To a normal person stress isn't good but for those who are sick it can be detrimental. I hope the next three months you can get out and enjoy life doing the best you can. You deserve true happiness." Instead of reaching for a hand shake he gave me a firm hug and said, "Your spirits are up and your in a good place." I agree! So maybe not medically but he meant mentally. I am a fighter and after given four years max to live with insides that don't work here I am 8 years later. How many people can say that? Those who are born survivors.

On our way out of the lab/chemo area to make my next appointment my friend-Caregiver commented on how each patient had someone there to support them. Sisters with Mothers. Grandparents with children. Friends with family. Fathers with parents. It was the most support he had ever seen as those today were clearly uniting together to beat the odds. To possibly save their own lives. If one would ever be humbled it was today. I walked out of that office today being thankful for the time I have here on Earth but also being more aware of my surroundings. I will fight for stress-free days because they are important with my condition. I vowed to my friend-Caregiver to be a happier person and to wear a smile more often no matter how cruel life or society can become. I must be more kind to me. Now is the time to find things in life that make me truly happy because we aren't promised tomorrow but those who are lucky enough like myself are proud to say I will fight another day.

"Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky."

"God always gives His best to those who leave the choice with him."

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 13, 2012 2:05 AM EDT

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Mood:  lucky

What a cute site waking up to seeing Pumpkin kitty sharing the recliner with Cuddles kitty. His other sibling Precious kitty will be turning 14 years old this week. In fact all of the fur kids will turn 14 this year except for Littleblue who will be 4 years old next month. WOW! Time does fly by and she has turned out to be such a smart but big girl! Speaking of Littleblue...Since she finally finished shedding her winter coat today is her salon day at the groomers. The new place we take her has gotten so busy since they first opened November last year that we must call a week in advance to get her in to see them. She walks in looking like a fluff ball and comes out looking like a HUGE COTTON BALL! Hahahahaha! Lately she has been a bit on the not so good side begging for my Greek frozen yogurt. I let her have a tiny bite the other day and I didn't think she would like the taste of it but I was sure wrong! She loves it!! 

Thankfully I was able to sleep in today since I have two specialist appointments and lots of blood work starting tomorrow. Hopefully this will be the last of seeing my doctors for quite sometime however I doubt the same will hold true for more testing. I just need a break and lately growing very tired of my Idiopathic Gastroparesis so when most ask how I am doing my typical reply is, "Same ole, same ole." I just don't want other GP'ers to think because I am going through so much they will also end up with the same problems. Gastroparesis varies from patient to patient and even the best doctors in the world can't predict the progression of our condition.What might be scary as heck for some while reading about the declining of my health doesn't necessarily mean they will go down the same exact path. I don't consider myself numb to what I am going through but instead consider myself a "Pro" only because I am used to my organs acting up at the drop of a pin. After 8 years I have grown to just accept things the way they are with my Idiopathic Gastroparesis but I still mix medical with humor. Its far easier to laugh sometimes in life than to cry.

I have received some very touching emails and letters the past few weeks which has inspired myself to get busy spreading Gastroparesis Awareness. The Gastroparesis Awareness Campaign team has come up with some amazing and new ideas to help raise GP Awareness this year. Today I decided its time to take the first steps in achieving our goals for 2012. There has been so many accomplishments over the past 6 years with the team that sometimes I need to be reminded that I have a purpose in life. Maybe it was never the intent that my life be cut short by this horrible GI dysmotility disorder but instead to continue being an example for others who are on the same GP journey.

This evening my friend-Caregiver went with me to the post office to drop off GP Awareness packets. One in particular stuck out which was on its way to Hong Kong. I told my friend, "Although I might not be able to travel anymore part of me still is and all the way to HONG KONG!" Now if only I could put a small hidden camera on the outside of the large envelope and literally watch the journey. How neat would that be!! So from Ohio to Hong Kong and in the hands of Jackie Chan indeed this envelope will literally see the world and so will the great Gastroparesis Awareness Campaign mission.

CHEERS TO FUTURE SUCCESS!

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT

Updated: April 12, 2012 3:19 AM EDT

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Mood:  spacey

I just knew this would be TERRIFIC TUESDAY! It sure beats spinning my wheels yesterday and getting no where.

I woke up with two messages waiting for me on my cell phone and sure enough! You got to be KIDNEY ME! (Hahahaha-Kidding me more like!) I actually got a call back from the kidney center. WOW! It took them over 24 hours but I guess they have a slow but organized successful office after all so once I went back to sleep and caught a few more hours of rest I returned their call. They finally got the rest of my tests and medical records so at this point the doctor felt it was important to work me into her schedule as a new patient appointment this week-Friday. I also got another phone call from my other doctors office that my lab work for my kidneys came back. It was good/bad news. Good news since there seems to be no sign of any infections going on nor signs of having kidney stones. Bad news my kidney function isn't normal and showing decline. Once again I was right on my suspicions since having strange symptoms and problems even my friend-Caregiver has noticed over the past three months. Now the next part of the great Kidney mystery is to get confirmation from a Nephrologist. I only say that seeing with my Gastroparesis you must accept the unexpected but never expect a cure. AMEN!

My attitude has changed the past few weeks. Its not that I don't care about my health or new problems due to my Gastroparesis progressing its just that I am tired of doctors, tests and finding out the fire in my organs-nerves are becoming further damaged. So far I have nailed the exact diagnosis on every single new symptom and problem. I honestly believe I missed my calling as a doctor years ago. Today once again I was only reaffirmed what I already suspected so in my opinion whats the sense of going through more tests and doctor visits to find out what I already know?...My friend-Caregiver brought it my attention today that he has noticed my attitude changing and feels I am losing my fight. He is a bit nervous that I might not attend my appointments so I made sure we were on the same page and in that I would go but I already know the answers. It has nothing to do with losing the fight because my boxing gloves are still on and laced tight. The fact is sometimes I get beyond frustrated with the Gastroparesis life.

"With Gastroparesis you can't expect to get answers that are not there."

This afternoon in order to give us both a mental break we went outside to finish a few more yard work projects. I felt like the beach came to my house as my friend-Caregiver picked all the seashells I have collected over the years from Florida that were hidden under the new wheelchair ramp. When they built the ramp last year they didn't remove the shells that were landscaped around the front porch. Today I was determined to have my friend-Caregiver pick them up and place them into a tote bag this way they can be replaced around the tree in my front yard next month. I ordered a huge truck load of mulch from the city that is suppose to arrive in three weeks and the seashells will look great in their new location! Once again I will be able to enjoy the seashells and know part of the ocean will always be with me. I miss going on vacations and listening to the waves hit the sand. I am not sure if I will ever be able to visit the ocean and seagulls again but its a sad fact I must face.

The fur kids got to enjoy the last day with their Easter baskets. This evening all of the decorations will come down until next year. Luckily the next big holiday isn't for awhile so the living room fireplace mantel can catch a break. Hee,hee,hee,hee,hee...So many friends of ours also this year ended up celebrating Easter at home. I only know of two friends and fellow GP'ers who contacted me that had family gatherings. Wow! I bet if Facebook comes up with "Holiday Family Facebook Cookouts" everyone would attend! Hahahaha! No need to buy gas since prices are still going up, just log online and everyone can bring a cyber dish or dessert.

SCARYYYYYYYYYYYY how the Internet has now replaced human contact isn't it?. Facebook has literally ruined many, many families not to forget many friendships too. It wouldn't hurt my feelings one bit if one day it went POOF! GONE! It also wouldn't hurt me one bit if cell phones with it went that way I wouldn't have to sometimes defend myself on a blog. I am sure many would agree. I have heard nothing over the past few years but more horrible family and friend arguments brought on by Facebook. Call me old school but I welcome back 110% the old fashion way holidays were celebrated: WITH FAMILY/FAMILIA! Amen.

This is going to be a quick week with a full schedule of doctor appointments for this gal but sometimes in life although we don't want to do certain things we do them for the sake of others. This week isn't about me finding out the facts. I already know them...

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 11, 2012 2:11 AM EDT

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Mood:  d'oh

Yep, its going to be a typical Monday! Maybe I should just follow in Pumpkin kitties footsteps and sleep the day away...

I set my cell phone alarm so there was plenty of time to start making a few phone calls in regards to seeing a new specialist. Add a Nephrologist to my team of doctors! Two of my other specialists gave me a few referrals which were great leads until I started making phone calls that had me not only stressed out but feeling as if I was running in circles. One Nephrologist wasn't even part of their group anymore and had her own office so I got another number only to get an answering machine to leave a message. Another group although are considered very good doctors I couldn't even pronounce their names and they were only available this month at an office located over an hour drive from my home. NOT. The last phone call was the largest Nephrologist group in the city however large doesn't always mean organized. Honestly after four hours playing phone tag with four different office workers at three different locations I wasn't even sure if this was such a great idea. If the office isn't organized it had me questioning if the doctors would be as well disorganized?...Hmmm?..I called my Gastroenterologist's office and left a message to see if they knew of any other Nephrologist's in the area but sadly there are not a lot of them. This must be a hidden specialist society-Nephrology. Hahahahaha! Not funny though when spending a day trying to get in to see a new specialist only to end up with your hands up in the air.

GEES!

My Gastroenterologist and his assistant did give me one other name to contact tomorrow in hopes it won't turn out to be another great Nephrologist hunt. My last phone call ended with the large disorganized group telling me, "I promise to contact you back by the end of the day with an appointment to be seen early next week." Guess what? She didn't. Imagine that! After today's stress if I hadn't heard of this specialty before I now have it planted firmly in my brain. Why they just don't call them, "Kidney doctors" is beyond me but since there are so few of them I might have a better chance hitting the lottery than finding one. Its all about patience with Gastroparesis and even after eight years I am still put into situations where it continues to test my composure. AMEN!

Since I was too busy once I got up dealing with doctor offices my friend-Caregiver decided to jump ahead on a list of yard work projects for this week. The backyard fire pit hasn't been cleaned up in over a year and needs some serious TLC! There are tons of branches and small pieces of wood laying around the fire pit. When the time comes to enjoy it there could be instead a fire hazard going on. YIKES! Sorry, but that happened a few years ago when "someone" put a huge pile of fresh cut wood right next to the fire pit after it was lit and didn't extinguish it when they were done. I woke up at 1am looking outside in the backyard that appeared to be lit with red Xmas lights only to realize the back of the garage and grass was on fire. It only took a few hot coals from the wood to crackle and jump into the huge pile of fresh cut wood but thank goodness for my instinct to look outside and a nearby garden hose! Surely we don't need that to replay again so better safe than sorry. After two hours my friend-Caregiver not only cleaned up the entire area but also placed the extra wood near the street for the city to pick up and help turn into free mulch for the residents.

NICE JOB!

Me? I stayed in most of the day although I did help a little by once again playing yard Supervisor. Hahahahaha! Once the wood was re-stacked and the fire pit area was cleaned up my friend-Caregiver cut back the rest of the landscaping, bushes, ivy, weeds, etc. Overall it was a productive but also a very tiring day for him physically and me more so mentally. The fur kids got to spend lots of time in the backyard enjoying the super nice cool weather so they should sleep extra good tonight!

I have three days left of the new medication then I will have to run things by my specialists regarding when to start up the ole Drano treatment again. The lab work for my kidneys will be back tomorrow and I am also hoping to get a new patient appointment for a Nephrologist too!

Maybe tomorrow can be TERRIFIC TUESDAY! WOOHOA!!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: April 10, 2012 4:29 AM EDT

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