Mood:  happy

Where has the time gone? It feels like just yesterday when I bought Littleblue's first little pink dress. Now the only part of her that fits into the dress is her front paw. Hahahaha! Maybe "HUGEBLUE" would had been a better name!

Since this has been Littleblue's week she has been treated to plenty of walks at the local park, new chewies and lots of new toys and treats. Oreo hasn't complained one bit since Littleblue has been nice enough to share. Even her birthday shirt from last year barely fits. She has grown up to be one beautiful "BIG GIRL!"

Since the heat is on its way starting tomorrow my friend-Caregiver finished up the landscaping and I assisted planting the traditional sunflower and wildflower seeds. We planted some in another flower bed earlier this week and they are already starting to grow. I love wildflowers because they attract so many hummingbirds and butterflies. Sunflowers are my favorite flower so they are a must to plant each year. I wish my Gastroparesis would allow for more outdoor time but the sunlight and heat continue to easily get the best of me. We are suppose to have work started on the house repairs this weekend but we will have to wait and see. Thank goodness for no rain in the forecast but I sure won't be enjoying this crazy heat!

My dear friend John finally made his first trip out west to look for a new home since getting his new job with the government. He will be living in Napa, California and I couldn't be happier for him! We have been friends for almost nine years and had a bet for the past eight to see who would be the first to move out west. He always wanted to live in California and me-Nevada. Looks like one down and one left-Me. Hee,hee,hee,hee... So not fair the amazing photos he shared with me today. SOOOO  NICE! John is hoping to finalize his move by the end of next month and if anyone deserves true happiness its him. CHEERS to John in finding his dream home!

This evening me and my friend started the process of filling out the huge stack of papers for my new colon surgeon and surgical staff. With so much information needed it might take us a week to finish. So far its only a team of 3 for after surgical care and help taking me to my follow up appointments and therapy treatments. Its going to be tough but where this is a will there is a way! If need be we might have to look into home nurse care but so far we are taking things one day at a time. I wish I could say the same thing about my poor hair. After straightening and trying to style it this evening the only thing I could say was, "EEK!" It hasn't grown for the past six months nor has it stopped coming out. Indeed next month I will have to say goodbye and farewell to my locks. Gastroparesis sure bites doesn't it!...

HAPPY 4TH BIRTHDAY MY LITTLEBLUE  XOXOXOXO

Posted by GastroparesisAwarenessCampaignOrg. at 11:29 PM EDT

Updated: May 25, 2012 3:29 AM EDT

Share This Post

Post Comment | Permalink

Mood:  chillin'

Happiness to me is new emery boards and clothes that ACTUALLY fit! Its also finding a way to better darken my sleeping quarters so the spring/summer sunlight doesn't get the best of my head.

Cuddles kitty is doing a bit better each day. We still must keep a close eye on her in regards to her heart murmur. I can tell when it is bothering her because she hides in various parts of the house. Oreo has his moments with his seizures so we continue to do our best making his surroundings stress-free and comfortable. Since its been fairly nice outside and the temperatures haven't been too hot Oreo and Littleblue have been enjoying plenty of time running around in the backyard. Since Littleblue's summer coat is now fully grown in she gets tired easily. After ten to fifteen minutes outdoors she is ready to come back inside. Oreo has a day at the groomers scheduled for tomorrow so he can stay cool outdoors when the temperatures start to rise this weekend. At least the groomer can shave his hair super short but since Littleblue is a Husky hybrid her hair must stay long. If you cut her hair short it won't grow back so she only gets an occasional trim but plenty of baths.

Its been a tough time lately finding clothes that fit. I wear a size 2 in juniors and a small in tops. The average "healthy" woman is not a size 2 nor still has to shop in the juniors department but I have no choice. Same with my hair that is barely there... Soon I might have enough wigs to open a shop in my house, hahahaha!. Most department stores don't carry juniors size 2 in pants or jeans so I was very happy today to have FedEx deliver some clothes that my friend bought me as a late Mother's day gift. Guess what? They fit! Finally pants and jeans that are size 2 and new tops to boot! WOOHOA! Add onto that other little things such as new emery boards that now cut the time doing my nails in half. Thank goodness! Just a few things most people take for granted but to me they mean a lot.

Since I am getting horrible tremors and seizures with migraines lately my specialist suggested I make my sleeping quarters a bit darker. Not that having room darkening curtains with dark colored towels hung up at night aren't enough but now the sun is starting to beam into the back part of the house that lets in light through the dining room. Of course the dining room is right by the living room thus my sleeping quarters/couch bed. The spring and summer sunlight also got to me around this time last year and usually makes my seizures worse. Arm tremors drove me nuts today so if I need to make the front part of the house darker then welcome to my new bat cave. BOO! Talking about literally sleeping with the VAMPIRES...My friend-Caregiver said this evening, "Wow! this is going to make the room so dark that I might have a hard time now waking up." Hahahaha! The things you must do being sick. Crazy isn't it?

My new surgeon called this afternoon and it seems we now have to set my appointment back a week which might be a good thing. Its been so crazy this month that waiting until early June might be a blessing in disguise to start working on the next step for my upcoming surgeries. This evening we finally made our way back to the local park so I could get some exercise. Boy did it feel great to get the heck out of the house! Sure, I got some more strange looks from my mask but its nice sometimes to be incognito. Who is that masked/sunglass woman anyways? Hahahaha! My joints and muscles are still sore and recovering from the last round of seizures so walking is a win-win for this gal. Hopefully I can catch a longer break and get back into some sort of routine but with Gastroparesis you don't live for tomorrow. You live for today.

"Courage, is knowing that something scares the hell out of you, but you do it anyways because you know it will change your life forever."

Posted by GastroparesisAwarenessCampaignOrg. at 11:52 PM EDT

Updated: May 24, 2012 2:20 AM EDT

Share This Post

Post Comment | Permalink

Mood:  celebratory

As a Idiopathic Gastroparesis patient I have found through the years that when there is bad news ten times as much good news soon follows! What has been pouring into my mailbox, email and cell phone has been an amazing amount of support from those who have decided to step forward helping to raise Gastroparesis Awareness. This blog that I started over two years ago has not only been a way for me to express myself but also a means to help others understand the many ups and downs living a life with Gastroparesis.

I am happy to say my blog continues to inspire many and even those whom I would least expect. I am honored to say some of my readers continue to step up to the GP plate as I am excited to announce: 

BAM MARGERA & THE CAST AND CREW OF THE HIT TV SHOW AND BLOCKBUSTER MOVIE SERIES "JACKASS" HAVE JOINED ME & THE GASTROPARESIS AWARENESS CAMPAIGN TEAM HELPING TO RAISE INTERNATIONAL GASTROPARESIS AWARENESS!

Bam, you made my day and so many other Gastroparesis patients that I wanted to personally say, "THANK YOU!" I want to also thank his loving family April, Phil, Don Vito and Jess Margera. An extended thank you goes out to Johnny Knoxville, Matt Hoffman, Loomis Fall, Manny Puig, Rake Yohn, Stephanie Hodge, Tyler Newton, Dave England, Steve-O, Brandon Dicamillo, Preston Lacy, Chris Pontius, Ehren McGhehey, Jason "Wee Man" Acuna and many blessings to the Dunn family.

I can't wait to start working with everyone later this summer bringing some of the Gastroparesis Awareness Campaign ideas from paper to life. CHEERS & KEEP ON! KEEPING ON!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 23, 2012 3:17 AM EDT

Share This Post

Post Comment | Permalink

Mood:  chillin'

You can write it out, map it out and even plan it out but sometimes life doesn't always go as planned.

Take today for example!

This was "suppose" to be the day of new beginnings. That next chapter in my life was "suppose" to begin today. I was super excited and looking forward to taking the first steps in closing one door and opening another but guess what? Things didn't go as planned. The day didn't go as planned nor anything else today went as planned. Even all the post it notes in the world couldn't had predicted today's events.

I laid down on my couchbed rather early last night. 11pm to be exact due to my head was pounding and I had a rather strange aura/sensation. What I should had known was this "aura" was a migraine with seizure waiting to happen. I took two Tylenol and put one ice pack on my face and one on the back of my head. I then got my extra large heating pad out to place on my upper back however I was already a bit too late. When seizure aura comes on you only have so much time to take your seizure medication. I was unfortunate when my seizure problems started four years ago to get the double whammy-seizure with migraine. Its hard enough dealing with any seizure disorder but worse trying to decipher if its a migraine aura you are feeling or a seizure aura. Mine last night into the early morning hours was both.

Let's just say if I didn't have my dear friend-Caregiver living with me I would be SOL! Even with me laying on my couchbed and him sleeping two feet away on the recliner still doesn't prepare you for a seizure. My warning should had been the two hours worth of tremors that would come and go, come and go but didn't actually "go" anywhere. Instead where they went was into a horrible seizure. So to make a long story short around 4am my body went into a full seizure in which I accidentally knocked over my side table full of liquid drinks then since I had my seizure laying on my back I vomited what fluids were in my stomach. My friend luckily was right next to the table that knocked into him so he quickly woke up until the seizure and waves of tremors subsided. Unfortunately after you have a seizure your body locks up and muscles are tensed up so there is no walking. 

Needless to say instead of me attending the meeting/appointment that was scheduled two weeks ago my friend had to go in my place. I won't be opening that new chapter in my life just yet and heck with closing any doors. I couldn't even come close enough today to reach the handle. Hahahaha! Instead I must wait another week and pray my Gastroparesis and other connected problems like my head-seizures calm down over the next several days. Its a good thing I have an amazing team of specialists who are quick on their feet and called in refills of my seizure medications since they now need to increase the dosage. Spring and summer has always been the nightmare time of year for me because light is my seizure trigger along with allergies that my compromised immune system has to endure.

With any bad day there is always a silver lining! My doctor called later this afternoon with my lab work for my kidneys. Luckily I won't have to see another new specialist to add to the current list of 18 and instead I will just have to follow up additional testing with my Nephrologist. My friend also upon getting the mail brought in a package filled with amazing news in the fight for Gastroparesis Awareness. Indeed the Gastroparesis Awareness Campaign Team and GP family should be very proud!

Gastroparesis+Drano aka Hell In A Jug+Relistor+Migraines+Seizures=A Very Bad Day.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 22, 2012 3:53 AM EDT

Share This Post

Post Comment | Permalink

Mood:  bright

Realization (probability)

I have quickly come to realize that when people alter their outer appearance it also alters their soul.

I have quickly come to realize that money although might glitter isn't always gold.

I have quickly come to realize owning a business might make you successful but it doesn't make you better than anyone else nor make you God.

I have quickly come to realize you can't change people and most people won't change.

I have quickly come to realize you can chisel away at someones self worth and self esteem but you can't chisel away their will to live.

I have quickly come to realize once you become ill it changes those around you. Most not for the best.

I have quickly come to realize when a loved one says they will never leave your side they do.

I have quickly come to realize when an ex keeps in close touch with a ex family member it isn't a bad thing but instead shows you are still on their mind in which is quite flattering.

I have quickly come to realize family isn't always family.

I have quickly come to realize what you see on the outside of an individual is just that. The outside.

I have quickly come to realize trust might be a five letter word but it can also quickly be broken.

I have quickly come to realize people can quickly be replaced, family members can quickly be disowned but you can't quickly replace yourself.

I guess after all these realizations I have come to quickly realize what matters most in my life is my health, my happiness, my fur kids, my friends/GP family/family but most importantly "ME."

-Kalyani KMA

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 22, 2012 1:00 AM EDT

Share This Post

Post Comment | Permalink

Mood:  not sure

It took me a few days but I am starting to wrap my hands around the inevitable medical changes I am soon to face. 

I saw my Gastroenterologist and his assistant Thursday and then saw my other specialist Friday so they could run another round of tests on my kidney function. My kidneys are not functioning properly so after four rounds of tests and three rounds of medication not working I have to go back to my Nephrologist then see another new specialist in a few weeks-Urologist all of course GP related. Not sure what they can do at this point but unfortunately I must go through more extensive and costly tests...

My Gastroenterologist appointment was Thursday in which I was told my colon must come completely out. I have far too many narrowing passages and kinks with my intestines that it is causing partial obstructions. The other problem is parts of my colon are dying which can cause dangerous toxicity in the blood. I wasn't expecting the news however I knew things were not getting any better with my paralyzed intestines. My doctors said, "We only put in place temporary bandaids over the past eight years but now the bandaids are no longer working." The dangerous lymph nodes inside my intestines luckily are in the beginning stages and isolated in which my Oncologist/Hematologist doctor believes is in early stages enough to get that bad colon out. They did want Cleveland clinic to do the surgery however my body would not allow for the travel so I am very fortunate to have an amazing new specialist/surgical team who do nothing but colon surgeries here in
Cincinnati. I am scheduled to see my new surgeon and her surgical team in two weeks however it will be a step by step process with additional testing they will need to perform as well go over all my prior medical and surgical reports. I also had to start a new liquid diet a few days ago in order to get my body ready. With that being said not that a inevitable high risk surgery isn't enough to worry about but my mind also has to also be in the right place. Stress levels that are way up there need to start coming way down here and now! 

The peace I have is knowing there is an amazing team of 18 specialists who all give 110% of their heart and soul in order to help me live the best life I can and truly CARE! Besides my specialists there is a lot of work and support that will need to go into the step by step process before and after surgery. Either that external support system behind the scenes are "in" or "out." I hope to be pleasantly surprised although expecting the worst but hoping for the best. I still have faith that people can change but only time will tell. As for now my friend-Caregiver has his list of duties to make this as smooth as a process it can be without any stress involved. Its amazing when my doctors told us how much internal damage stress can cause a pre existing condition so this time I am listening and staying with the no-stress program.

The goal now is to shift my attention by preparing my mind and body for surgery. The final road to survival.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 19, 2012 4:38 AM EDT

Share This Post

Post Comment | Permalink

Mood:  not sure

My friend John has been keeping close touch with me regarding his big move out west and new lease on life. He has also been sending me photos of his new neighbors, Mom and the kitty gang.They are just the cutest! His own fur kid enjoys watching the gang outside playing during the day while Mom stands close by protecting them. He said, "One day they just appeared and have been hanging out every sense." Hopefully Mom will continue taking great care of her little ones and they will find a new home soon before the summer heat arrives.

My Gastroenterologist appointment was this afternoon and I finally was able to sleep so good that it was hard to wake up. My body sure needed it and hopefully the rest of the week I can do the same. Luckily my friend-Caregiver remembered to set his cell phone alarm because I clearly forgot and same with turning the fan around once I turned it on. Hahahahaha! Nothing like running a fan and aiming it in the wrong direction before going to sleep. That sure told me how out of it I was before laying down on my couch bed.

With a ton of things weighing on my mind regarding the house, moving and major life changes I added another one that trumped the rest this afternoon. My specialists appointment went as expected but with one huge twist. It seems the "temporary bandaids" for my paralyzed intestines aren't working anymore. In fact things are progressing faster than expected which is leaving me more sick than I already was to start with. My mind is still in a fog from the appointment. The only thing I can say on my blog today is I will once again have to endure another major surgery. Todays news has also trumped the decision of moving this month. In fact for my health sake I will need to hold off on things until the first of July. My Gastroenterologist also had reports and letters from my other specialists including my Oncologist/Hematologist which clearly explained the severity of things and the need to start getting my body and mind ready for surgery. Maybe once I can wrap my brain around things over the next 24 hours I can explain to others in further detail but for now its time as my doctor said to take that stress level from all the way up to all the way back down. DITTO!

"We're not asking for money. We're asking for Awareness, the key to a Gastroparesis cure."   Kimberly/Gastroparesis Awareness Campaign Founder 

www.gastroparesisawareness.com

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 18, 2012 5:38 AM EDT

Share This Post

Post Comment | Permalink

Mood:  not sure

One thing I have learned years into my Idiopathic Gastroparesis diagnosis is you can't force people to accept and understand our condition. You also can't allow yourself to stress from people refusing to accept and understand our condition.

One hour me and my friend-Caregiver are up then the next minute we are down. This is NUTS! The stress is off the charts and I am not sure how much more house drama I can take nor others adding to my stress. Surely I just need to learn to hit the ignore button and walk away from additional stress brought on by others. For now there are far more important things to worry about such as where to move, if I can move and whether or not my body will allow for a move. My friend's buddy at work has family who owns a construction company that has offered their heart, time and resources in trying to fix some of the home water damage issues from all the excessive rain we have endured the past few months. What we really need isn't a few people to help. What we need is a "TEAM!"

The time has been going by so fast that I can't figure out what day we are on anymore. My poor hair is maxed out in between my medical condition, treatments and now this relentless stress. Next month I might need to finally say goodbye to what hair I have left on my head. The strange bruising which as of two months ago has a rhyme and reason due to my lymph nodes in fight mode is once again flaring up not that anyone should be surprised. Especially me. Can I do this huge move? Will it be safe? What if we stay at the house during repairs? Will it put me at further risk due to the hidden mold? Question after question after question have been filling my days along with the physical stress of constantly having to be on the go. Where is help when you need it? Too busy to care and too busy to lend a hand. That's where. Negative attitude? Sure. Who wouldn't with the situation going on? Not everyone can be a great actress and if so I guess you won't be seeing me on any soap operas or block buster movies anytime soon. Hahahahaha! I see my Gastroenterologist tomorrow and boy! do we have a lot to talk about. Maybe he can give me some insight on the boundaries that will need to be set being sick while trying to get past this unfortunate house situation. Amen. In the meantime if "help" can find us we are only a phone call away...

"Normal healthy people obsess over shoes, shopping, what to eat, make up, TV shows, whatever. Don’t get me wrong… I enjoy all of those things too. I just can’t obsess, because I quite simply do not have the energy or time, or dependable pain free day to count on. I have no choice, I have to live my life different from everyone else around me. I have to think about just getting up out of bed. I need to think about my medication. Do I need to stand for long periods of time? Where is good for me to eat, transportation etc…. Just so many little things that people do not put much thought into at all. I have thought about these things so many times, it is like living in a different world, with different issues, different priorities, and an entirely different language that I can only speak." 

-Christine Miserandino

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT

Updated: May 18, 2012 5:35 AM EDT

Share This Post

Post Comment | Permalink

Mood:  energetic

There is no rest for the weary...Same with sleeping in. With so much going on I now have to set my cell phone alarms in order to remind myself to take in fluids. I am also taking in extra vitamins. Now whether or not they are absorbing I assume only my body knows but with the end of this house nightmare yet in sight any little bit might help!

Today we woke up with another list of things to do including four call backs regarding potential rental properties to get us far, far away from all this mold due to extensive water damage. The sooner the better once I spoke to a restoration certified technician who clearly said, "There is a lot of damage to the foundation inside and out from not just the excessive rain but since the house is 102 years old it has shifted. Your best bet is to move because the air isn't safe and this won't be a quick fix." I pretty much figured such so thank goodness I jumped ahead looking for a temporary place to stay for a year. This of course hasn't been easy. With the economy still in bad shape you have some folks who "BELIEVE" they can flip houses meaning they buy foreclosures then fix them up to rent/lease but do not have a clue what they are doing. We have seen our fair share of horror fixer uppers. Some I had to bite my lip in order not to scream and others were just down right funny. Clearly one gentleman never watched Jeff Foxworthy because this house flipper thought his property was a few days from being ready. I wanted to turn around and say, "HERE'S YOUR SIGN!" Hahahahaha. Ready? NO WAY! I would rather sleep in my car than in this house which was worth about $300 a month/lease instead of his asking price of $1,000. Like I said, "It been a very interesting past few weeks.

Since my kidneys and intestines have yet to calm down my Gastroenterologist wants to see me later this week. I am sure I am in for a good sit down talk after canceling my list of tests for my kidneys ordered by the Nephrologist I saw last month. Besides the fact I need a break, I really do NEED A BREAK! With the last round of labs showing continued declining with my kidneys anything is possible however I live for today not tomorrow. I can deal with medical problems like a pro however I don't deal with sheer ignorance lately from people. I guess in my opinion I didn't ask to be sick nor could anyone had predicted my future of Idiopathic Gastroparesis and connected problems however what I have seen over the years from human ignorance can be controlled. No excuses in my book so I am more than prepared to face the sound of medical music later this week.

After one heck of a month and more madness to follow I decided this evening to treat myself to a much needed pedicure and massage. Not only was it a great idea but I had the entire salon to myself! Sooooo worth it!! Now my feet are once again happy and if they could talk I bet they said, "THANK GOD! I NEEDED THAT!" Hahahahaha! My friend-Caregiver decided to stay at home and start mowing the grass because he knew I needed a huge break. When I got back home it was once again time to get back on my feet. It was also time to do another round of injections. Once I finish up this last box at least I can tell my Gastroenterologist I tried the entire prescription. Even the defective needles like tonight. YIKES! The needle fairy must had once again been looking out for me before I injected it into my stomach. Its just been another one of those days but not to fear eventually the end of stress will be here.

"When life knocks you down, you have 2 choices. To use the little strength you have left to fight your way back up, not knowing when or why you could be knocked back down again, or just stay down. I guess that is why we call it courage, the courage to stand back up when life gives you hundreds of reasons to stay down."

Posted by GastroparesisAwarenessCampaignOrg. at 11:21 PM EDT

Updated: May 18, 2012 5:35 AM EDT

Share This Post

Post Comment | Permalink