Mood:
don't askNow Playing: Day 580-The Final Road To Survival
Hmmmm....Sure seems like its Wednesday all over again...Set cell phone alarm last night, wake up to Littleblue howling to go outside, feed the fur kids, tidy up a little bit then get ready to head to my doctor's appointment.
SAY WHAT?!
Did I just say, "Doctor's appointment?" Yes, I did seeing once again my internal organs are screaming something isn't quite right so is my gut. Unfortunately after my specialist attempted to treat me at home with medication that didn't work I am left with nothing but to suck it up and head to the doctors today.
I refuse to allow today to turn into another unproductive day. After realizing my car tags are up for renewal next month I decided to get that taken care of before my doctors appointment. I was told I can get handicap plates this way I don't have to worry about playing musical placards. I have one in my purse and one in my car but sometimes when my friend drives darn if I don't forget it. At least now I can just have it on my plates and put the other handicap placard in his car and leave it there! By the way did I tell you the new tags are free?! Yes, FREE! I couldn't believe it either, something finally that us who are handicap don't worry about having to pay seeing aren't the hefty medical bills enough?! So with thirty minutes to spare we headed down the street to my local BMV. It must had been a lucky day because there was no one else in line. WOW! Of course we ended up with an employee who was clueless on the new handicap plate forms for me to fill out but after ten minutes of waiting then getting my renewal tags we were on our day to my doctors appointment.
Speaking of also being lucky...I am fortunate enough to live within a short distance of all my 17 specialists like my doctor today who is just a few minutes away. It takes a team to handle my internal mess. I have a specialist per organ and honestly most will not cross their specialty seeing I have had the same specialists now for over eight years and they thoroughly know my unique medical situation. I am called their "Complex/Special Patient." Although most just call me plain "Lucky" or a "Walking Miracle." I would like to think I am both!
Once we walked into the office it was the same routine of signing in, going over my medical insurance, handing them my copay then taking a seat in the waiting area. Since it was already the start of a lucky day I was also the last patient being seen since they were nice enough to work me into their schedule. I only waited a few minutes then was called back into a room. My weight isn't the best it could be but my doctors totally understand when you can't digest food and you are always having to do Drano treatments it will be impossible to gain weight. I do the best I can but looks like Santa might need to bring me a few new pairs of jeans this holiday season because my size 2 are getting to be a bit too big.
My doctor greeted me with a 'Happy Belated Birthday' then proceeded to go over my symptoms. We also went over the medication I tried that for some reason just wasn't working. My doctor said, "You know your body better than anyone else so when something is wrong and you flag us there has yet to be a time where you weren't right." Today was no exception to the rule. The liquid dynamite in a jug I am enduring twice a week is starting to really mess once again with my kidneys. This would explain why over the past week I am constantly urinating and in the bathroom. Although the darn Drano didn't work this time around it still has to pass through my organs. The mixture is extremely harsh and toxic to my kidneys. What I thought was something else going on is just that, "Something ELSE going on."
SHOOT ME AGAIN! Does this look familiar or what?! Only difference is: New doctor, new shirt, new chair but different day, hahahaha!
So...to make a long story short I won myself two rounds of medication on top of my doctor having to send my urine off to a lab this way they can see first hand what kind of damage the darn Drano is doing to my kidneys. Honestly I am not really that surprised because the Hell-In-A-Jug is not meant to be consumed on a weekly basis. Its only meant to be consumed once in a lifetime either via colonscopy or as a surgical prep. Although as my own doctor stated, "Its important you still keep up with your treatments because it is keeping you from getting into trouble and causing bowel obstructions." Sadly looks like I have another serving on my already full plate but its just part of my crazy Idiopathic Gastroparesis life. 
I wouldn't be lying by saying after awhile you start to get used to the never ending problems. Lately I have been putting a lid on discussing my medical battle keeping it to under a select few except my friend who lives with me. I don't get into the full story or all the details seeing I feel its now best to keep things on the low. I am not getting any better but I also refuse to give up so I keep fighting each and every day.
This blog will most likely be my only outlet in the very near future explaining how I "really" am doing and why not? I don't feel the need to bring others down. I also would rather hear how other patients are doing in hopes maybe I can help them with their own GP journey. It makes me feel useful and I enjoy helping others. It also allows me to shift my focus to someone else which allows me time to escape my reality if only for a bit.
When you don't have local support and you had to become your own main support to a never ending battle after awhile you are OK with keeping mum. My friend said, "You are that way because you had to fight alone. You had to endure the blunt of things without having someone by your side. You were alone most of the time over the past eight years. You battled solo for such a long time that it made you super strong. You are a true fighter." It does make sense if you really think about it. I wasn't babied or pampered being sick instead I had to endure things on my own. So maybe its not fair but guess what? It's life. Now I don't have to be sick alone. I don't have to go to all the doctors appointments alone. I don't have to always be my own best friend but I am glad I learned how. Now I am blessed to take this next decade of my Gastroparesis journey with someone finally by my side.
So I chalk up today as just another battle to overcome. Including this evening as I once again have to bring out Mr. Puke pan, UGGGG! Things don't get better with Gastroparesis. Things progress over time. There are no answers. There are no cures. There are though people out in the world who do care and you don't have to go on your GP journey alone.
God is good and when you do good onto others eventually that help and support will find you. Amen.
d'oh
"THE SAME OLE SONG & DANCE"
All was not a loss.
I went today with an open mind expecting the worst but also hoping for the best. Instead I left today putting my lab coat back on playing my own best doctor minus the six digit salary, hahahaha!
It was a productive day yesterday and one darn CRAZY DAY today! WHEW! Just call it a little bit of everything all rolled up into one. At least with the rain and dreary weather there was less sun seeing it finally gave my head a break! It's been sunny enough the past week. The downside is with all this rain over the next few days it means the wheelchair ramp most likely won't be finished until this weekend. I guess if anything I can be glad for much needed rest and no loud hammers or saws waking me up. Same goes for my friend who had to work mandatory overtime this morning at the county jail and didn't get home from work until 12pm. He was BEAT! since he went to work yesterday at 10pm. 
I got the wonderful privilege of dealing with another medical bill error today that started December last year after getting a CT scan at a facility that told me it was in network. A month later I get a bill saying I owe $1,750. NOT! Once I spoke to the head administrator on the error seeing my insurance company was never even contracted with the facility he clearly stated to me, "This is our error and go ahead, disregard the bill." Now almost a year later I get a statement from a collection agency saying I owe that same facility $345.00! WHAT?!!! I tried my best to remember my new resolutions for this new decade in my life and kept my cool but I have never had anything in collections so this was new to me. I tried contacting that same individual at the imaging facility where obviously they have some sort of miscommunication among themselves but of course they don't contact me. I was instead told by a billing representative that they did me a favor and wrote most of it off and was only charging me the remainder of the balance. MMMM....This was wrote off last year so there wasn't any balance to be remaining but I might as well been talking to a wall because the wall wasn't listening. My family agreed with me that this error on their end continuing for a year now just isn't worth the unnecessary stress so we paid the bill but not without me explaining the full situation with the collection agency. Not only did they listen but also told me, "Please write us a letter on everything you just told me as well a copy of the letter to the facility who wrote this bill off a year ago only in turn to charge it back to you again. We will investigate the matter with the imaging facility and get back to you. If it appears this is a situation that clearly as you stated was wrote off last year and there is a line of miscommunication within the facility we will credit you the money back on the bill." FINALLY SOMEONE LISTENED AND UNDERSTOOD! So lesson learned is this: Make sure you check and double check before getting any test done at any facility as well your insurance company that the facility is contracted with them. Never let anyone tell you it is or that they checked already because things like this can happen and no one terminally ill needs this type of unnecessary and additional stress. AMEN! Also if you are dealing with a mean, nasty and hateful spouse/ex who feels they don't need to help you with any bills and refuse to pay for any to put their name down as the responsible party with your medical professionals or any imaging facility, hospital, etc. ANOTHER LESSON LEARNED.
There is a new show that me and my friend were wanting to watch and it finally aired late last night. The show is called, "MonsterInLaws" and boy was it FUNNY!! Kinda scary too seeing I could relate a bit with both new episodes that aired back to back. My friend sadly said they could relate too! It is a reality show if you want to call it but I say its more like "REAL LIFE." Just shows you once again what I always believed which is blood isn't always thicker than water. Maybe back in the day when family truly stuck together through the good times and the bad. Now in days families barely even communicate or know each other. Strangers now become more like family doing heart felt things reaching out to help one another. HMMMMM....Kinda like the concrete ground work that lead to the making of 'The Gastroparesis Awareness Campaign' over five years ago. A way for patients and their family, friends and loved ones to find support and not be alone nor feel alone. I guess you can say I would had rather been born back in the 1930's or 1940's. Maybe we all could take some of the lessons back then on how to treat family and apply them to our every day lives now. Amen.
sharp
My friend thought it was a good idea to head to the store which is right down the street by my house before the huge storm and cold front comes through this evening. At least with the store being so close to home I can make a quick run to the bathroom if need be but that as well was wishful thinking because the ole Hell-In-A-Jug continued the remainder of the afternoon to do absolutely nothing. Zip. Zilch. It was also a fast run through the store because when the nightmare poison lingers in my body it makes me sick, nauseated and BEYOND MOODY! WATCH OUT! Hahahaha!
I didn't need to say anything to my friend because they have taken a few glasses for the team on a few occasions. Once we got home we rolled up our sleeves and brought back out the cleaning supplies. By 6pm we finished up the rest of the house which included two bedrooms, the upstairs hallway, upstairs bedroom and second bathroom. 
Let's just say too much of a good thing is too much of a good thing and if my back could just separate and walk away this evening it would had done so because I was on fire with pain! I see my Neurosurgeon in a few days and know I am in for a good scolding. I won't deny being a bad patient but gees cut a gal some slack after years of going through nothing but pure hell. Amen! Once we finished up cleaning I figured it was a good time to take a shower and clean up while my friend cooked his dinner and finished the laundry. I got the PacMan World game on Wii as one of my birthday gifts so while I gave my body a much needed break and read the paper my friend got his Wii game-face on and enjoyed the remainder of the evening.
Nothing quite like starting the first week turning 40 with a jug of ocean tasting saltwater!
Cleaning is a million times easier when you have help and it wasn't so scary like it used to be before I had my friend to assist. The Drano also went down a bit faster but not without a few times gagging and then getting things hung up. Sadly that sensation lasted for four hours and this treatment just didn't work, DANG IT! Typically a normal person would be in the bathroom within the first hour and making over 30 trips by now but not my UFO paralyzed intestines. Oh no! that would be too easy because instead by the time it was 11pm I only made two bathroom trips. I also didn't get any further relief the remainder of the evening so looks like another Hell-In-A-Jug treatment is in my very near future.
celebratory
After a long drive back home at 2am from a very HAUNTED B&B we were both BEAT! When we walked in the door we were greeted by a very happy fur gang! Littleblue dedicated as she is was waiting for Mommy to come home and sleeping on the same spot she usually does before we go to sleep. Same with Oreo on his couchbed.
This is the last birthday celebration day and my friend decided we need to see if Lady Luck is on our side. What did we plan on doing for this evenings activity? CASINO! WHOAHOA! We were both feeling a bit more rested from yesterdays mansion trip so why not take a short drive back to Indiana and hit Indiana Live casino and horse track? DEAL! We would had taken my friends new car, the 2012 Chevrolet Cruze however since it is deer season I don't feel the need to gamble with driving in a small vehicle and dodging at the same time wildlife on the open road. Looks like the Hummer is finally getting some use and not having to sit in the garage for another weekend.
TALKING ABOUT LIVING LIFE ON THE EDGE THIS WEEKEND!
So it was a great evening at the casino and we even brought back some spending money. I didn't hit anything on the open road and the hour drive back just seemed to fly by with great conversation and plenty of laughter. Once we got home it was midnight. We got my couchbed together for a well needed night of rest and my friend slept on the haunted recliner-so he says it is haunted, heeheeheehee! I decided to get the video out from the mansion or should I say the hour video before we darted the heck out of there! HAHAHAHA! Once we put the video in it was only a matter of time before explanations started to surface on video with the eerie feelings I had in the mansion as well the suite. On more than a few occasions you can actually see dark shadow images walk in front of the camera lens. You can also hear unexplained footsteps followed by dark shadows standing in front of and behind my friend. YIKES! It was quite fascinating and just to make sure we both weren't just seeing things we re-winded the tape more than a few times to freeze the frame then replay only to see the same shadows over and over again. Some of them were not that tall then a few seemed to be almost the same height as an adult. If we didn't believe our gut then we surely do believe it now. 
At 2:30pm we headed down the road. I called my parents to see if they could come over later in the evening to let the dogs outside and make sure the animal gang had plenty of food and water. My friend Kevin was nice enough to call around ten minutes after being on the road to let us know about a wreck that had two interstates shut down so NOT a good way to start a trip so lucky I was able to take a different way around the backed up traffic to Indiana. We thought everything was going fine and we were making good timing until of course we hit highway construction and a traffic mess for honestly no good reason. Why in the world when they are only working on one section of the road must they shut down one lane when there clearly isn't any work being done? GEES! Call it, "my pet peeve" and quite annoying. Since we took my Hummer it was tempting to just make my own lane but since I am now in my 40's I vow to be a bit softer now and not panic or be bitter. Road bitter included! Hahahaha!
We arrived at the mansion around 5:30pm. My back was locked up and my intestines were angry from a 1.5 hour trip that turned into a 3 hour drive from you know where. It was already a testing time for my new birthday resolutions but the old me would had turned around on the expressway already and headed home but the new me said, "NOWAY! If I have to crawl to the mansion I am going!" So after taking around ten minutes to peel my back off the car seat we headed up to the mansion front entrance. It was HUGE! Once you walked inside it felt as if you stepped back into the late 1800's. It was decorated with old antique furniture, restored doors, woodwork, windows and photos of the Schneck family who built the mansion over one hundred and thirty seven years ago. 
Talking about a bit EERIE!
Once we got back to the suite we quickly placed our belongings down and headed out to do some sight seeing and visit the other rooms in the mansion. Another group of people were also doing the same thing as they told us about the old underground tunnels in the basement. We had a story of our own about the attic known as the "Widow's Window." There wasn't anything more bone chilling though than the basement tunnels. Not only did four of us go down there around midnight but one of us had a camera which caught images of orbs then two distinct faces of a little boy and girl smiling with laughter. I don't get too spooked very often but looking at the very clear images surely we weren't alone in the basement. In one section of a tunnel was a box of very old report cards dated back to 1920 along with a very old vase and a few toy balls. I gently kicked one ball into a corner of another tunnel only to come back and find it right back in the same place before kicking it. This wasn't the only proof of spirits playing with us because another person took a small red ball and was followed by orbs on a camera taken five seconds within each frame showing someone or something following him with the ball as if to say, "Let's play!" The upstairs area in the attic which was next to our suite was where the owners wife back in the day would look outside the small circular windows to see if she could see the smoke stakes from her husbands steamboat coming down the river. The presence of someone was very apparent as well footsteps that could not be explained that continued later in the evening in our suite. I was doing good until I got an overwhelming feeling once everyone said goodnight and headed back into their rooms. I didn't want to say anything to anyone but I did tell my friend it felt as if someone or a few others were in the room with us. It felt like a presence of children.
We didn't laugh on the way out nor as I took my time packing things up but I couldn't help but chuckle because there was enough friendly spirit things going on that freaked my friend OUT! It wasn't a bad feeling but fun and playful. I assume it was the same children as the faces we seen in the basement and who knows? They might had followed us up the steps back into the suite since this was after all their parents bedroom. What I do know is we were all not alone in actually witnessing the supernatural and being blessed by feeling the energy of spirits. Those who have passed on but still want to be remembered and never forgotten. I was always a believer but there were many tonight who weren't but are now convinced.
I got a fairly decent night of rest. I now have a daily routine down with my Zofran. Usually it makes me a bit tired but after taking it so often its starting to lose the side affect along with zapping most of the nausea. Last thing I need is to become immune to the only medication I can take so sadly I have to cut back a bit starting tomorrow and maybe just bring more Peppermint drops with me in my purse when I go out anywhere. My family is getting together at a local fondue restaurant this evening which happens to be one of my favorites so sorry Mr. GP if you don't settle down then I guess you are coming along for the birthday festivities. 
This morning at 10:30am my friend said he woke up to the sound of the doorbell and what appeared to be a forest in a huge vase, heeheehee! No silly, instead it was a beautiful arrangement of flowers sent to me for my birthday then thirty minutes later another knock at the door brought a dozen of gourmet cookies-more like 'NONO' cookies but a few bites here and there won't hurt but this time I do need to be careful. Family and friends still try their hardest to remember what I can or can't have but its hard for them seeing most people can eat without ending up in the local ER but with this gal I have to really be careful. With all the nausea and vomiting I don't need any reminders since I now get them on a daily basis. I also got many nice cards and lots of birthday greetings sent via text, email and voice mail messages through out the day.
By 4:30pm me and my friend headed out to meet up with family. So I had to bring Mr. GP but no worries seeing no matter what each day brings you still have to get out there and live life. I refuse to waste more precious time that I already lost over the past eight years so if I want to do something or go somewhere I am going! Crawl there? OK. Wheelchair? Sure. Cane it all the way? Why not because I won't stop living and life doesn't stop evolving.
Thank you to family, friends and loved ones for all your thoughtful gifts, cards and messages. You truly made my day a memorable one! Thank YOU from the bottom of my heart XOXOXOXOX... 
Its one more day before I make that final turn. That final exit out of my 30's and into my 40's. EEK!
OK. To be exact my boots!
I have this one pair that I just refuse to let go of due to #1 they are comfortable and #2 I just was always too sick to take the time to find a new pair to replace them. 
Today was the day my friend vowed if need be take a Port O'Potty with us and head to the mall to find me some souls. NEW SOULS! Hahahaha!
My friend also chuckled and lets just say there isn't strong enough superglue to hold them together for another decade. Hahahaha!
Tomorrow is a day to celebrate. Celebrate life. I am fortunate and beyond blessed to be a living, breathing, walking miracle. My doctors always tell me, "Kimberly, you have been through hell and back but your strength has allowed you to survive. You are a survivor and its your determination that makes us fight harder for you to continue living the best life we can give you." After over 8 years of fighting today I can look back and say, "It was worth it. Life is always worth it and YOU are worth fighting for!" Amen. 
hug me
By the time I finally got up it was 1pm. I let the fur kids outside and started with the normal house chores getting blankets put away, feeding the kitty gang, etc. Once I was able to finally look outside the wheelchair ramp was quickly coming along. It looks surreal seeing the ramp slowly come to life. Maybe its because for years I tried playing the 'Superwoman' role wearing my cape as if I wasn't aware of my limitations due to being sick. Maybe it also was because of people who surrounded me who acted like I wasn't sick or avoided me due to changes in my life from being sick. Now a new side of me is being embraced and now I fully accept me with all my limitations. This will never mean I am giving up or giving in because no matter how many hits or punches come my way I will always do my best to fight back and continue defying the odds.
Later this evening once I got my Hell-In-A-Jug together, chaser glass of Hawaiian punch and a few pieces of hard candy I paused for a moment to look outside at those working hard to complete the wheelchair ramp. I was touched. I was touched that although they know about my medical condition they are not fully aware of all the limitations that it places in my life. What they do know is that they 'care.' They care about my well being. They care about making life a bit easier for me. They care about me and caring shows support. I have come to realize its OK embracing support from others and its OK for me to take it. I guess after years of giving support because it helps me with my own journey I never realized that at the end of the day you also need your own form of support. Your own support team.