Mood:  not sure

Patients with severe idiopathic bowel dysmotility have severe upper gastrointestinal symptoms such as bloating, abdominal discomfort and vomiting after meals. In addition these symptoms are common to continue in patients even after subtotal colectomy. Recent studies have shown other various connected gastro abnormalities including esophageal disturbed upper and lower sphincter problems.

-Digestive Diseases and Science

Ahhhhhhhhhh......So this is what they like to call having to endure Drano aka Hell-In-A-Jug on a weekly basis or what other patients instead are enduring which is the magic glass bottle aka Magnesium Citrate? Maybe all these doctors and scientists who conduct years of research and data for the government need to just say its called, "Gastroparesis" then maybe our conditions would be taken a bit more seriously. Amen. The problem by not giving the various symptoms its proper name is the same problem why those who don't live with Gastroparesis but live around it are so darn confused. In turn it makes those of us who are Gastroparesis patients frustrated because society fails to understand what we have to go through on a daily basis due to lack of education...

I got my wake up call around 11am. Seems my lab work came back stat in less than 24 hours. It showed more blood than expected in my urine due to failing kidneys which is caused by connected dysmotility problems called, "Gastroparesis." My doctor asked how I was feeling in which I replied, "The same, not any better but not any worse." His response was a bit different, "It has gotten worse because your labs this time are showing things progressing and the medicine we have been trying isn't showing signs of working. You will need to see your Gastroenterologist next week and he will need to figure out the next course of action." Knowing my luck it will most likely mean adding one more specialist to the team of 17 or worse the dreaded word, "Dialysis." Sure, my attitude stinks today and who could blame me? I just woke up with bad news on top of dealing with bad Drano all night into the morning and early afternoon hours. I have a hangover from Drano hell going on with tremors and a nasty headache. At least I can say the toxic poison finally started working 8 hours later and I finally got some relief. WHEW!

Once I forced my tired body to get up and moving I checked the mold kit petri dishes for any changes. Guess what? WE HAVE MOLD FOLKS! DANG IT!! Seems out of the four spots we tested two are now showing mold growth inside the petri dishes. Of course they are from the basement wall downstairs where the water has been a huge issue and upstairs in the crawl space where the third bedroom is located. YIKES! Seems sleeping in the living room over the past four years which is located in the opposite side of the house where we are having all the water problems might had been the safest place to sleep. The mold is just now starting to grow so its white in color but once again only time will tell how bad things are going to get. My friend-Caregiver suggested we just might need to once again keep our options and eyes wide open when it comes to looking for a new place. Not that my full plate isn't already too full just imagine adding the 50% possibility of having to do a major move. This sure can't be good nor healthy for someone in my unique medical situation. Times like these I question where is Ty and is he going to move that bus so I won't have to deal with more stress? MOVE THAT BUS!

S I G H...

Yes, I always said, "Things could be worse." I better stop saying that because every time I do things literally do get worse! Whats next? A rare Egyption python snake is going to escape from Egypt and land in a FedEx flight and find its way on my front porch? Is Jack in the beanstock going to jump out of my peach tree in the backyard? I know! Maybe the land of make believe really isn't make believe after all and this is just some kind of joke and Tom Cruise is going to run into my house and scream, "YOU JUST GOT PUNKED!" Hahahahahahahaaaaaaaaaaaaaaaa!

CHEERS TO BETTER DAYS AHEAD!

"A strong person is one who is quiet and sheds tears for a moment, and then picks up their sword to battle another day."  -Sweet Misery

Posted by GastroparesisAwarenessCampaignOrg. at 11:48 PM EDT

Updated: May 12, 2012 4:33 AM EDT

Share This Post

Post Comment | Permalink

Mood:  chillin'

Today is the last round of water damage cleanup around the house. THANK GOODNESS! At least we all got plenty of sleep and the fur kids didn't wake us up until 2pm. I was out like a light and slept into the early afternoon hours without having to get up one time. WOOHOA! I sure won't be saying those same words tomorrow since this is Drano aka Hell-In-A-Jug treatment day.

I checked the petri dishes to see if there were any changes detecting various types of mold but so far the only one showing anything is the one from the basement. GO FIGURE! We all had a hunch if there was any mold inside the house it would be confined to only the basement. Thankfully the other three tests have yet to show any mold growth. It does take up to 72 hours for mold to start growing so for now we will just have to play the waiting game. My friend-Caregiver had the final job cleaning up the basement from the mold cleaner and then put a clear seal caulk around the doors, walls and under the basement bar tile. We thought it would be a lengthy job however it only took him a few hours. Less than expected! I think we are both glad to see the final clean up come to an end and hopefully very soon the same will hold true for the house repairs.

The weather did a rewind today and once again its fall. We are loving it! The fur kids especially enjoy the cooler temperatures because it means more time playing outside in the backyard. Even Pumpkin kitty enjoys laying on the porch when we are outside. He won't go out unless someone is with him because he gets startled easily. While I started the ole Drano treatment my friend played frisbee with Littleblue outside while Oreo ran around the yard. They should be extremely tired later this evening once we all wind down to watch TV. This is of course after hours of walking around while enduring treatment. By the time I am done I should also be ready to sleep later this evening. Since I am back to the generic brand of Drano it should be less harsh. Name brand drugs might be better than generic but not when it comes to Drano treatments. WHEW! I would much rather deal with a less harsh taste than the straight up foul salt taste with the name brand jug.

"FUNNY HOW ONE CAN START TO COMPARE GENERIC DRANO TO NAME BRAND DRANO. CLEARLY I HAVE CONSUMED WAY TOO MUCH DRANO! HAHAHAHAHA!"

Walgreen's called to let me know the rest of my Drano jugs were finally in today. They have also been dealing with the great Drano caper seeing instead of getting my prescription for eight jugs from the manufacturer they received split shipments. Two arrived one day then one the other day then another two yesterday. TALKING ABOUT FRUSTRATED! This time of course it wasn't me but instead the Walgreen's pharmacy staff. My friend went to get the broken prescription while I stayed home to finish up my treatment. When he came home empty handed I figured they were still dealing with lost Drano jugs at the pharmacy. He even said the entire staff was so curious to find out what I had medically that they began to ask him numerous questions. Thank goodness my friend has been around me long enough to master the method behind the Drano madness and he is very educated about Gastroparesis. He did me proud! Hee,hee,hee,hee...He said, "Once I got done explaining what you go through and why you have to consume this once in a lifetime medication on a weekly basis the only words you could hear from everyone behind the pharmacy counter was WOWWWW!" Once again the key to a cure will always be awareness. Gastroparesis Awareness!

After consuming my last glass of liquid dynamite I found enough things around the house to keep me moving however once again ole Drano is going to take its sweet time working. GEES! I was hoping by going back to the generic prescription I would get faster relief but the only thing I got was less bitter salt and chlorine taste. Forget about any rest tonight or catching up on my favorite shows because this might be a very longggg DRANO night...

Posted by GastroparesisAwarenessCampaignOrg. at 11:51 PM EDT

Updated: May 11, 2012 1:05 AM EDT

Share This Post

Post Comment | Permalink

Mood:  incredulous

It was hard to wake up and although my mind was ready to seize the day my body clearly wasn't. Make that a "DITTO" for the fur kids too! Oreo was so relaxed I literally had to get his bag of treats out to get him off his big comfy bed. Hahahahaha!

This was suppose to be treatment day however things took a bit of a turn by later in the afternoon. Once we finally started getting motivated our first stop was to my doctors office to have my urine checked by their lab. I wasn't expecting any great Houdini moves and POOF! my kidneys are back to normal but I guess I wasn't expecting things to be far worse either. By the time I walked out of the room they already were checking my urine in which they quickly detected more blood and red cells than the prior few visits. GEES! The nurse told me the doctor needed to check into a few other things and would give me a call back in a few hours however by the time me and my friend-Caregiver left the office it was only 20 minutes later before they called me back. Seems things with my kidneys haven't left nor did they suddenly correct themselves. Sounds like the rest of my great GP caper right? Right! My doctor has to send my urine back out to another lab to see what the next step will be because this can't keep going on. My worst fear would be having to go on dialysis sitting through a 4-5 hour treatment. YIKES! For now until they get things back from the lab next week I was put on medication to take at home but if my body can't absorb it I will need to have my medication given to me via outpatient through IV. We are crossing our fingers the oral medication will somehow find its way through my paralyzed organs instead of having to sit in a hospital.

Question to my doctor and lab tech: Could this be a figment of my imagine or all in my head? Their reply with a few chuckles, "Only in the land of make believe."

OK. I did pinch myself so guess this is real and really going on. Hahahaha!

So...After getting some GP news which wasn't too surprising because Gastroparesis is a progressive condition it still shocks me how fast a good day can quickly turn bad. Its no wonder the water issues due to all the excessive rain has yet to break my patience. I have far bigger and more important things to worry about.

"My health."

Me and my friend had spoken to a Realtor yesterday evening regarding a townhouse 15 minutes away our home. We are keeping our options open in fear that the air quality tests next week might show hazardous mold. Black mold is still the deal breaker and although we hope for the best we still must remember we could be facing the worst. Once we got to the property memories starting coming back fresh in my mind because this same area was where I used to live. The townhouse I lived in over 9 years ago was actually right down the street from this property. We even stopped by my old home and I took a few photos. Ahhhh...Life before GP...The townhouse we looked at is actually in a different community and resembles a German village. They were all very nice and the property was located right next to a bike trail and large park. Things "looked" great until closer inspection. The two upstairs windows had broken seals so once again there would be a moisture problem in the house. Second was the front screen door that needed to be replaced. However the big deal breaker was the foundation cracks in front of the property that would clearly cause basement problems with water coming into the house.

YIKES! Thanks, but NO THANKS!

We didn't even make it into the townhouse because the outside was enough. Looks like we might as well start the basement cleanup at our own home because so far we are having no luck looking for a new place. Its also very stressful and I am not sure if my health would allow another move. We don't have much help either in the area and so far we are doing things solo. Thankfully before we left earlier this afternoon the repairs with the gutters on the left side of the house were under way and we were told the new glass block windows would be in by Monday. A few other people were also going to be over Monday to go into the basement crawl space outside to see if they could find the source of the foundation and water issues. It won't come without an additional cost of living that will start hitting us the first of July. At this point we both came to a quick agreement to proceed ahead with the house repairs, added costs and air quality check that if it does show excessive levels of toxic mold we will do our best to come to a remedy to fix the situation. If its too toxic and we can't occupy the house then we will cross that bridge when we get to it. Amen.

This evening I decided since I was already mentally tired between the doctors appointment, townhouse search and getting mold cleaning supplies I would just do my treatment tomorrow. We did find the Mold test kits and cleaning products at Home Depot. My friend did the basement cleaning as I took on the CSI role. Hahahahaha! Hey, it wasn't only interesting but also fun! Now we must wait 48 hours to let the petri dish grow mold, if there is mold present in the house to grow. My friend had to deal with the super potent mold killer and cleaner which even a face mask couldn't 100% block out. Thank goodness it was a much cooler day outside and we could open the basement door and turn on the fans. We both gave the mold cleaner products a HIGH FIVE! I won't know about the mold test kit results until Friday so only time will tell...

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 10, 2012 4:08 AM EDT

Share This Post

Post Comment | Permalink

Mood:  d'oh

Do you think by the photo taken this afternoon that we need anymore rain?...

The past 8 days have been stressful and its no wonder my GP is still in an uproar. I woke up inflamed as all heck and laid down just the same. Even while doing my best to increase physical activity still doesn't help. Looks like the only last resort of hope will be the ole Drano treatment tomorrow to force my GP back into remission. I was always told over the past eight years from my specialists that stress is fuel to the GP fire. DITTO TIMES 1,000,000,000 but darn am I doing my best not to panic in a very bad situation! My friend...well his patience jar might take months to refill. I am also finding myself once again grinding my teeth. Luckily I catch myself and stop because my teeth have already taken a big enough beating from the weekly intestinal treatments.

Today was post-flood inspection day. I like to call it, "Dread-Day." After that inspection I am surprised I didn't grind my teeth all the way down to the gums, hahahahaha! Thankfully the garage drain decided to open this morning and the standing water receded however there is mud once again in the back of the garage to clean up. There was a hole near the drain on the left side of the house that was patched which hopefully is the cause to the water coming into the side door. There are some roof shingles that need replaced, two glass block windows in the basement to be installed next week, new gutters on the left side of the house, gravel to be put down around the house foundation and lastly after one wall was cut into there appeared to be no mold "HOWEVER" they need to climb into a few other crawl spaces outside to find out the extent of water damage to the other basement wall which is bowing. WHEW! On top of the not so great news an Air Quality company needs to come out within a week to test the air inside the house for mold-black mold. Since there has been so much water damage inside and around the foundation the city inspector has concern of his own that there might be black mold growing. This of course isn't always visible by the naked eye. Today no one was able to find the mold smell culprit but thats not to say it isn't there.

I did find online this evening a do it yourself mold testing kit at a local Home Depot store and indoor mold cleaning products. You know what tomorrow has in store for us right? R I G H T!!...More like-for my friend seeing its not safe for me to be in the basement nor around the mold once it gets a good cleaning and sanitizing. Luckily they are predicting cooler weather with no rain and plenty of sunshine for the next four days so it will be a great time to get the mold cleaning started. At least we have plenty of fans now to circulate the air to go outside the basement door to help quickly dry things out.

Desperate times call for desperate measures...

I have dealt first hand with black mold almost nine years ago when I lived into a three level townhome that picked up the mold via a joining air duct from my elderly neighbors home. My neighbor was very, very sick and was suffering from Crohn's disease and kidney failure so she had no idea there was black mold in her air ducts which was picked up by my furnace until the air conditioner got serviced and POOF! it was found! Needless to say it was a very quick evacuation and all contents had to be sanitized by a professional cleaning company and hazmat crews. We are just praying this isn't going to be another townhouse mold situation. S I G H...I am expecting the worst but hoping for the best however it might be inevitable that a move is in our very near future seeing the last thing I need is to live in hazardous air again. Maybe I need to start playing the lottery? AMEN!!!! Or maybe I just need to get that new three room tent, queen size air mattress, large sleeping bag and comforter out that I bought before my GP took a nasty turn and put it all to good use! Like making it my new outdoor home. Hahahahahaha! If the air tests show black mold that tent might just be my new home starting next week-YIKES!

After a long and stressful day me and my friend decided to head up to the local park. Walking is not just great for Gastroparesis but also for stress. Too bad it didn't walk my flair up back down but there is always Drano hope tomorrow. The way things are going I might not have to worry about cutting the rest of my hair next month. The house stress just might do it for me. Hair today. Gone tomorrow...

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 9, 2012 1:48 AM EDT

Share This Post

Post Comment | Permalink

Mood:  lyrical

It was the start of a better and drier day "however" seems rain, rain and more rain is once AGAIN on its way....

By the time we got up it was a mad dash for my friend-Caregiver to get the lawn mowed, clean out the side gutters and finish clearing the garage pipe out. I had to run a few errands trying to catch up on mailings, bank deposits, picking up prescriptions then getting some groceries. This was course after a doc visit and tests for my kidneys. WHEW! What a day! If I could drink regular coffee with my GP I would had hit Starbucks with a double latte on the way back home just for energy! By the time I pulled into the garage my friend has just finished up the last of his list as well cutting the grass. We got the leashes together and walked the fur kids just in time for the monsoon rain to hit again. We both were a nervous wreck to see if the temporary repairs over the weekend would hold up the basement wall, side gutters, window well and garage pipe/drain.

10 Minutes Later...

Need we go there? A G A I N...The side door seemed to be leaking worse since clearing out the gutters however the make shift moat was at least keeping the basement window dry. HOWEVER the garage was a different story. My poor friend who spent almost four hours cleaning up the last great flood didn't want to see what was going on once I opened the garage door. EEK!! The only positive out of a negative was finding the culprit which was of course the garage drain that was cleaned out just yesterday that once again had water overflowing on the garage floor. Outside wasn't any better either. Much like my intestines, "FOLKS! WE CLEARLY HAVE A PLUMBING/DRAIN PROBLEM!" Hahahahaha! Yes, I did make a joke out of it in front of my friend and we both laughed seeing it was better than screaming. I told him, "There are far worse things that can happen in life and I have been through my fair share." He has been there during some of those hellish times so he totally agreed. Tomorrow we have a few people coming over to start "doing" instead of 'thinking' of how to repair everything. At this point I am more than ready to move out west!

Not that this wasn't a bad enough day I went to use my medication this evening and came across a bad needle. Thank goodness the needle broke off in the medicine vial and not in my stomach. YIKES! It had me so paranoid I almost skipped today's dose but luckily the next needle wasn't a faulty one. The only one who was clearly smiling about the situation was my next Hell-In-A-Jug treatment. Maybe he set me up? Hahahahaha! Since my GP is still in a flair I settled for a limited liquid diet today which consisted of juiced veggies/fruits, decaf coffee-GI mix, watered down Slimfast and a diet IBC root beer. Hey, its better than just drinking low sodium chicken broth. AMEN!

We must keep reminding ourselves that tomorrow is a new and hopefully better day! Sure hope so because after today my friend's patience jar ran out and so did his energy...

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 8, 2012 3:08 AM EDT

Share This Post

Post Comment | Permalink

Mood:  bright

Littleblue sure couldn't get comfortable last night but I assume it is because shes still in heat. She has been driving Oreo nuts too! Littleblue constantly wants outside to find herself a boyfriend but that sure isn't happening. Last thing we need is a house full of puppies. YIKES! Soon enough instead of puppies we will once again have HEDGEHOG PUPPIES! Hee,hee,hee,hee...Since this is her fourth heat it has become the normal ritual. Its back to collecting of the hedgehogs and placing them in a pile while she Mother's and protects them. Its still cute to me!

Since it was an earlier start to the day than usual we made a list of things to do regarding the water damage from last week. Today it was time to clean out the mud in the garage from water backing up through the drain. Speaking of drain...I finally figured out how to get the top part off and my friend-Caregiver was able to manually clear it out the best he could although you can clearly see there is some serious problems with the drain system. Call it another "temp fix." The garage was another story. Since the water got up to a little over a foot the mud was a huge mess to clean up. Everything had to be moved out of the garage first then items that could be cleaned up were taken in the backyard while the rest went out to the top of the hill near the street. Let's just say within five minutes a bike, grill and firepit were POOF! GONE! I bet by tomorrow everything else will also disappear. I was able to help hose off the muddy things in the backyard while my friend took over the big clean up which took him a little over three hours. At least the garage nightmare is 100% cleaned up and this time we rearranged things a bit differently just in case the garage floods again so we don't have to live through another nightmare. The garage drain was also a huge mess since there was mud literally caked in the main drain. Thank goodness one thing is finally done on the list with four more to go!

My Gastroparesis is still in an uproar this week and today is no exception. Even with increased walking time I have yet to get any relief. This means next treatment coming up is going to be extra wicked! Slimfast has been my sole means to getting some sort of vitamins and nutrition but still it takes me almost half of a Smartwater in order to get the consistency thin enough to drink. This evening I attempted some fudge but once again I quickly found out me and fudge are no longer friends. What went down or "tried" to go down within an hour came right back up. Note to self: Scratch off any fudge possibilities and don't ever entertain the idea again. I have been adding edible mint oil to my Smartwater to help a bit with night time nausea. Now if only the makers of Slimfast could come up with a Chocolate-Mint flavor it would really save me from adding mint oil to my Slimfast or buying MetroElectro Mint water to water it down. Hey, anything in the future is possible! I miss the old Slimfast in a can and all the different flavors. With only having five things a day I can tolerate with my Idiopathic Gastroparesis things are getting old, "QUICK!" For now I will continue like I have over the past eight years with my GP diet. "TRIAL & ERROR."

Later this evening after dropping by to celebrate another May birthday I headed back home to find my friend working on the basement wall. What a job! Instead of this project taking a few days it might take four. Spackling old concrete-plaster walls is harder than we thought. Either this temporary fix works to hold the foundation together during the next storm or we are going to be in big, big trouble! Hahahahahaha...Look out next week because I see plenty of projects to come! Watch out GP! Ummm...Another note to self: You can fix walls but you can't fix Gastroparesis. DUH!!

Normal people ask "How can that happen?"
Heroes ask "How can I help?" - Unknown

Posted by GastroparesisAwarenessCampaignOrg. at 11:31 PM EDT

Updated: May 7, 2012 1:02 AM EDT

Share This Post

Post Comment | Permalink

Mood:  incredulous

It was another night/morning of solid sleep. THANK GOODNESS! Although the great sleep sure didn't help my angry stomach and intestines but at least hopefully it will give me some extra energy to seize the day!

Me and my friend-Caregiver had plans to head out this weekend starting our weekend ritual of finding new places to go however when the GP Monsters come calling there is no stopping them. Instead of going out we decided to start off the afternoon catching up on some yard work. The peach tree in the backyard is full of peaches but at the same time my backyard is now being frequently visited by Mr. Groundhog. I have a hunch he will be the first next month to try out the fresh peaches. Since we have to keep spraying the tree once a week to rid of any fruit flies it does help keep any animals away but once the peaches are ready to eat I doubt the wildlife will care since I won't be able to use any repellent starting next month. I still vow to buy the apple tree I saw last month but I must add that to my "Post-It note" list on the kitchen cabinet door because I keep forgetting. There is so much going on this month even my friend is having a hard time keeping up! At least the roses aren't getting any unwelcome visits from Japanese beetles. In fact we noticed quite a few new blooms today and have yet to ever seen such huge roses but they sure are beautiful!

My Grandmother is getting rehab and physical therapy at a place near my home so later this afternoon we decided to go visit her. I haven't seen my Grandma in months, well since late last year. Her birthday is next week and she will be 87 years old. She still has all the spunk and humor in the world and even my friend was smitten by her jokes. Hee,hee,hee,hee... I bought her a Grandmother mug with a heart handle and filled it with candy. The place where she is getting rehab is super nice and the staff was very friendly. Her roommate even had a visit from her Granddaughter who brought up her beloved fur kid. The little one was too cute! We all had a very nice time and I hope to visit her again next week.

This evening while letting Oreo and Littleblue outside I just happened to look into the main drain near the garage door. Guess what? I believe I found the source of the great basement flood. Well, at least one of them. The drains are meant to "drain" the water from around the house not store it. Water was almost to the top of the drain so surely there is some sort of blockage and luckily it will be looked at tomorrow instead of Monday. The side of the house might need to be fixed where the new awning was built last year but at least the home made moat last night did help with the rain by keeping it away from the window well.

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EDT

Updated: May 6, 2012 2:18 AM EDT

Share This Post

Post Comment | Permalink

Mood:  rushed

 Looks like more rain is on the horizon so its going to be a very humid and wet weekend. Ugggg...This weather sure reminds me of being in Panama and visiting the rain forests. One trip in my 20's I will never forget along with many others happy memories. At least the roses and wildflowers in the front yard and around the landscaping are enjoying all this rain. This is the first year in quite awhile that the blooms on the rose bush are huge! My peach tree in the backyard is also doing quite well and looks like there could possibly be peaches to pick come mid June. Hope my new neighbors are ready! Homemade peach pie for all! YUMMY! Well, at least for those who can eat.

Today is Cuddles kitties 14th birthday. Littleblue's 4th birthday is next week. The fur gang are not only well taking care of but spoiled rotten! Hee,hee,hee,hee..Its hard to believe they will all be 14 years old this year. Where did the time go? They are quite energetic and Bear kitty still has his "Crazy-Cat hour" which starts around midnight and continues till 2am. Thank goodness I am on VAMPIREEEE time due to my medical condition because if I was still able to work Mr. Bear kitty would have to find a different play time.

With the rain heading in for the weekend me and my friend-Caregiver made some quick decisions on how to temporarily hold off having flood problems once again in the basement. The last clean up was enough of a pain and with the weather channel showing quite a bit of rain it might be a great idea to temp fix the failing outside drain and basement wall. After going to Lowes then running a few other errands we came back home so my friend could begin doing some quick patch work. So far. So good! If all else fails at least we now have more than enough buckets and mops. Hahahaha! My neighbors are also getting ready for the rain by stocking up on old towels just in case the dirt that was put down around the house foundation doesn't work. Looks like both of us will be seeing lots of repairs starting early next week. THANK GOODNESS! Its been a real challenge on my patience but I must remember there are far greater things in my life to be worried about. Amen.

Since this is day 4-after treatment my insides are sending me warnings of a few bad days to come. It feels like I have huge 50 pound bags of sand around my stomach due to severe intestinal inflammation from the Hell-In-A-Jug treatment. Regardless of the pain I still did my best to keep going today because its far easier to sit around and complain then to get up and try to do something about it. My spine was kind enough to give me a small break this evening so I could use my treadmill. So maybe it didn't help but at least I tried. My fellow GP friend who is also playing guinea pig to the new injectable drug Relistor is starting to have a few "new" problems. At least she is getting some relief but when she isn't using the medication its right back to the same ole song and dance. I think her Gastroenterologist also meant well by trying her on the new drug but its clearly not meant for Gastroparesis/paralyzed intestines but more for those who have been taking opiates for a long period of time. Like years. Its also for those who are recovering drug addicts or patients who have other chronic medical problems and use pain medication. For Gastroparesis patients? Forget it! I still have yet to find any relief but continue to deal with far more frequent tremors that dance on the seizure border. Not that I don't already have them nor is this weather helping but thankfully I only have a month/trial left to try the medication. Looks like Drano & Slimfast now have something in common with me. Its a permanent way of life!

 "I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.

I hate that I know my doctors better than I know my friends and some of my family.

I hate walking around in public with a limp, or worse, a set of crutches, a cane or a wheelchair. I hate not being able to wear tall sexy shoes, because I can not walk in them. I hate trying to quickly think of the much cooler reason for having a cane, or wheelchair. I hate that I don’t know a cooler reason.

I hate never feeling good enough, quick enough, pretty enough, or just “enough”. I hate living up to other people’s expectations of what being sick is."

"This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny." -Christine Miserandino

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT

Updated: May 5, 2012 5:01 AM EDT

Share This Post

Post Comment | Permalink

Mood:  happy

Its continuing to be a great month of May! I feel more positive changes soon ahead! Maybe its the lucky shoes?

I think everyone can relate to something in their wardrobe that has brought them luck. My shoes are the luckiest thing I own seeing they have walked a million miles and have been witness to some of the most changing events in my life. Today was no exception. Without getting into detail I will only say I made it one step closer this afternoon to being awarded the next new chapter of my life. Money doesn't buy you everything and clearly it sure doesn't buy you happiness either. I have had some of my best times in life being broke and some of my worst times in life being financially secure. Amen.

My dear friend John also had some GREAT news to share with me today! He not only got a letter back this past weekend from a government job he applied for two weeks ago but today was told he got the position. WOOHOA! John will now be living his dream in Napa, California and also starting a new chapter in his life. Add his beloved fur kid to sharing a new life out west too! He will be looking for a new home in the next few weeks then officially moving by the end of June. I am so, so, so happy for him! If anyone deserved some true happiness and positive changes in their life it is my dear friend John! That now makes it official as one of us starts heading out west this year so I better start looking a bit more seriously into Nevada because life waits for no one!

We are still in the process of drying out from the monsoon rain and storms from the other day. The garage remains musky and damp along with a few puddles of water but lots of mud. UGGGG! We have to wait until it completely airs out first before the next step of the big clean up begins. Hopefully that will be by this weekend. Luckily the rain they did predict for today didn't happen. We are both hoping the same holds true for the next several days! The basement is almost dry but our main concern is mold that might be in between the walls so looks like there is still quite a bit of repairs to look forward to this month. My neighbors got a truck load of dirt delivered early this morning. They are hoping it will help until the basement foundation repairs are finished. I think everyone on our street is just praying for drier days ahead!

Health wise things remain the same. My kidneys are still filtering blood and red cells but only as expected. Everything else as a result from my Idiopathic Gastroparesis progressing remains the same. Not any better but not any worse. I have yet to get over this last Drano treatment so once again this evening it was back to trying the rest of the new injectable medication. My spine will always remain a problem when it comes to sitting and standing but with the travel season almost here I sure do wish I could take a longgggg vacation. Since I do better by keeping myself mobile and moving around maybe I could just walk to my next vacation destination. Hahahahaha!

One can still dream can't she?...

Posted by GastroparesisAwarenessCampaignOrg. at 11:04 PM EDT

Updated: May 4, 2012 12:06 AM EDT

Share This Post

Post Comment | Permalink

Mood:  celebratory

Talking about some rain!! 4 inches of rain in less than 12 makes for one heck of a flood! History may have built this house but obviously they needed to add outside the walls a moat!!

The fun began around 1am once the first monster storm made its way through the area then the fun continued until 10:30am once I opened the garage door and found up to a foot of water in some areas. Maybe we should had used a canoe or kayak making our way inside and outside around the house.

WHAT A MESS!

Yes. I kept my cool that was until three tiny holes started to form in the downstairs basement wall making it look like a miniature water fountain. YIKES! Seems we were not alone because if you think a house with history over 102 years old is bad just imagine the other houses on our street all around the same age (within 10 years). My poor neighbors who just moved in a few months ago are already getting beyond stressed out when the second flood hit their basement last night into the early morning hours. We both had to resort calling not just the insurance company who mind you don't offer flood insurance on our policies but as well the city building/zone department. Its days like today that one wishes they still lived in a townhouse or large condo because this house is starting to become just way too much work. Amen!

If the flood waters aren't enough as of this evening Mr. Drano treatment still remains stuck half way through my intestines. It made for some not so great sleep in between saving ourselves from the flood. I was dragging all day and tomorrow is going to be just as eventful if not more than today. WOOHOA! Not. I plan on finding myself on my couch bed by 11pm tonight after only getting four hours of sleep the past 24 hours so look out sheep! There will be no counting tonight! Hahahahaha!

In honor of my old house and history at its finest (even the water kind) CHEERS!

May 2012

"THE GASTROPARESIS AWARENESS CAMPAIGN TEAM PICKS A WINNER!"

FROM THE HIT TV SHOW, "AMERICAN PICKERS"

THANKS TO MIKE, FRANK & DANIELLE FOR SUPPORTING THOSE IN NEED

Posted by GastroparesisAwarenessCampaignOrg. at 9:22 PM EDT

Updated: May 2, 2012 10:05 PM EDT

Share This Post

Post Comment | Permalink