Mood:
luckyNow Playing: Day 733-The Final Road To Survival
Another week quickly comes and quickly goes...Today marks my last of many appointments this week with my specialists. I went to sleep earlier than usual this morning. 4am is early for me compared to my typical time between 6-7am. I have a few additional days of medication to finish up since they have me down from two to just one pill a day. If there was any slight sign of infection anywhere in my body it is surely gone by now however all the blood work so far has come back negative. I assume they still want me to finish everything as a precaution.
I see my new specialist today-Nephrologist. Their office is not too far from my home but since it is Friday and my appointment isn't until 4pm we decided to leave a bit early. Since I start back treatment again tomorrow there are quite a few errands we need to run before and after my doctors visit. The fur kids at least got to enjoy time in the backyard before we left since they are predicting rain to come in later this evening. Looks like this might be a rainy and warm weekend stuck home with Mr. Drano.
They gave me directions to the doctors office earlier this week however once we got off the exit they took us the wrong way. Thank goodness we were running a bit ahead of schedule and the work traffic wasn't bad yet. The office was very large and roomy. It reminded me of an open floor plan and since I have seen my fair share of doctors offices this one was white, bright and cheerful. Nice for a change! The office staff wasn't the unorganized group that was on the phone earlier this week as I found out that was the central scheduling office. No wonder they had me running circles to get into a new patient appointment and it all finally made perfect sense! I filled out some typical medical and insurance forms then within five minutes my doctors assistant called me back into a room. My other specialists had already faxed over all the test results and reports to the new Nephrologist.
Of course I had to once again leave a urine sample to check for changes since last week. Next they checked my vitals only to find out my low blood pressure was running a bit lower today. They had me sit, stand then sit again. Standing made my blood pressure lower which was a bit odd to them however I said, "Call me the special patient because my wiring is a bit off." They chuckled and then made a suggestion that I continue using a cane so I don't lose my balance with having such low blood pressure all the time. I am already one step ahead of them! The nurse was intrigued by my Idiopathic Gastroparesis and once my new Nephrologist came back into the room he also quickly became very interested in my past medical history. I have high expectations of this new doctor who must clearly work with the rest of my medical team. Smart? Yes. Informative? Yes. Compassionate? Yes. Could he possibly fit in with rest of my specialists? Yes.
After finishing up the remainder of my examination which included going over tests, office reports and lab work I got asked, "Have you ever traveled or visited any Latin countries?" I answered, "Yes, Panama when I was in my 20's." My doctor explained there is an insect known in the Latin countries that can cause central nervous system damaged upon being bit by the insect. He further said, "The symptoms can come on years later although I am not trying to scare you but since your Gastroparesis is Idiopathic and you clearly suffer from severe nerve damage this could be an avenue to further investigate." Wow! I wasn't scared at all but very impressed however it also seems my Oncologist/Hematologist was already one step ahead going down the same avenue two years ago when he ran extensive blood work looking into the same theory. Results from those tests? Negative. With one Grandparent who has kidney cancer the genetic factor does pose me with a risk of also developing kidney cancer however this isn't the case right now. Instead once again I was told things are happening due to a mechanical problem with nerves that control my organs. Not only is my Idiopathic Gastroparesis progressing but now taking with it my kidney function leaving other nerves severely damaged. Just how damaged? My kidneys are not emptying properly. My Nephrologist took a pen and piece of paper out then started explaining what was going on. The path from my kidneys all the way down to the final process of fluid elimination is disturbed due to severe nerve damage. My urine today continues to show red cells and blood although it doesn't mean I have an infection but it also has my lymph nodes in an uproar. I already have one lymph node monster my Oncologist/Hematologist is dealing with so it was a blessing to hear no connected problems/cancer with my kidneys however they are not functioning properly. They did suggest I have a few tests repeated and another blood profile done but in the end my doctor said he can not fix the problem with my kidneys and GI tract. He also said, "The extensive damage is done. Your condition has and will continue to progress. There is no treatment that will help in your unique situation. I don't foresee the cultures changing however your kidneys are not getting the proper nerve firing needed to function."
S I G H... Once again I took the news with a smile because there is no need to get angry or upset. I pretty much figured there would be no quick fix or solution to the great kidney mystery. In fact there is no cure nor quick fix for any of my organs that are suffering horribly by the hands of my Idiopathic Gastroparesis. I was very, very impressed with my new doctor but question if the tests are really necessary since there will be no cure no matter what comes up. At this point I might need over the weekend to think things through and run them by my fellow GP friends. Its always better to get a few other opinions. My gut is 50/50 but I think everyone who suffers from Gastroparesis just wants relief, answers and a cure. Sadly most patients walk away without any of the three and instead must learn to live with constant new problems. 
My Nephrologist stepped out of the room to make a few calls then check into a cat scan report from another specialist of mine. Once he returned back into the room familiar words began ringing in our ears, "We as specialists and surgeons can not heal damaged nerves. We can not fix damaged nerves. Technology is not far enough to allow us answers for you. Your case is very fascinating and intriguing because it all started from severe nerve damage and remains Idiopathic. The problem is your GI tract is paralyzed from top to bottom which includes all organs. It is not surprising your kidneys are also showing signs of problems because they are part of the digestive system. I would still like to run the tests ordered but in the end there isn't much I can do for you."
Hmmmm....Didn't me and my friend-Caregiver already figure out the end conclusion? I personally hit it right on the nail! I already know with Gastroparesis as well Parkinson's and other conditions caused by nerve damage there is no cure nor answers. Only temporary relief if even that is possible. Is that possible with my kidney situation? No. The entire path from my kidneys to the last step of filtering urine out of my body is permanently damaged. It is as he said, "One more annoying thing to deal with." AMEN! So after shaking hands and taking hospital orders for further testing I thanked my new doctor for a very insightful visit and reconfirming what I had already known. On the way out the nurse wished us both a great weekend and said, "If you need anything in the meantime please don't hesitate to call." My doctor also walked back out, handed me his card and said, "If you need to get in touch with me or have any problems with fever, rash, vomiting or extreme abdominal pain please contact me on my cell phone." Next time I get the same rash on my stomach I have been experiencing over the past year he wants me to take a photo and send it to the office. In his eyes it might hold a key to a few more answers to my great Idiopathic Gastroparesis mystery. I sure hope so because not only can it potentially help myself but many other GP patients with their great medical mysteries! Amen.
On our way home after running a few more errands my friend-Caregiver stopped and got some Chinese food and gave me the fortune cookie. I recall a family member telling others regarding my medical condition, "She just got dealt a bad hand of cards." I like to say its not the hand your dealt, its how you play them. Isn't life funny sometimes how it reminds you of your strengths and weaknesses even in the form of a fortune cookie?...
My fortune cookie read,
"Life is not a matter of holding good cards, but sometimes, playing a poor hand well."
AMEN!
Today I have one of two specialist appointments for the week. I made sure to schedule them once again towards the end of the week because most people would rather have a jump start on their weekend and not spend Friday in a doctors office. Not me though. I have Drano weekend to look forward to so the later in the week the better. Someone today made a comment to my friend-Caregiver that its crazy how someone can sleep until 3pm. Obviously the person who made that comment either A-Never experienced being truly sick B-Never knew what it was like to work third shift or C-Lived under a rock most of their lives. Hahahahaha! Seriously, who makes those type of comments even after reading my blog and who knows how many other blogs? I also was once again told that someone in my condition shouldn't be allowed to have children over my house. One word: HA! Are you serious and what type of person says such a thing? I tend to believe they needed a reality check and should had instead saved the side show comments and went with me to my Oncologist/Hematologist appointment this afternoon. They would had been awakened by the reality of one word: Life. There were many of those going through chemo today with their children by their side. I didn't see anyone saying they shouldn't have kids because they are sick or have to seek treatment. Instead it was a beautiful site called, "Caring."
After catching a few laughs with the nurse and my wonderful-multi talented Oncologist/Hematologist today he will still need for me to come back in three months. At least I will be able to give myself a much needed break. They will have to rescan and check my lymph nodes again for growth changes only as expected. I am ok with that because I never intended to be cured today. I only expected a great appointment and to learn more about my condition. Today answered many questions not just for myself but also for my doctors since we are a team. My other specialists will receive a report on today's visit from my Oncologist/Hematologist so they can continue connected the mysterious GP dots. I was given the "A-OK" to start back on the ole Drano aka Hell-In-A-Jug treatments this weekend seeing I sure don't need to become toxic. I was also told to finish up the new medication but always to remember, "If you can handle the pain without taken narcotics you will be much better off. We don't want to see you suffering but we don't want things to be made worse." This is exactly why "some" of us don't get to sleep until the wee hours of the morning because we are fighting pain and don't feel like making our conditions worse or becoming addicted to drugs. 
I walked out of that office today being thankful for the time I have here on Earth but also being more aware of my surroundings. I will fight for stress-free days because they are important with my condition. I vowed to my friend-Caregiver to be a happier person and to wear a smile more often no matter how cruel life or society can become. I must be more kind to me. Now is the time to find things in life that make me truly happy because we aren't promised tomorrow but those who are lucky enough like myself are proud to say I will fight another day. 
What a cute site waking up to seeing Pumpkin kitty sharing the recliner with Cuddles kitty. His other sibling Precious kitty will be turning 14 years old this week. In fact all of the fur kids will turn 14 this year except for Littleblue who will be 4 years old next month. WOW! Time does fly by and she has turned out to be such a smart but big girl! Speaking of Littleblue...Since she finally finished shedding her winter coat today is her salon day at the groomers. The new place we take her has gotten so busy since they first opened November last year that we must call a week in advance to get her in to see them. She walks in looking like a fluff ball and comes out looking like a HUGE COTTON BALL! Hahahahaha! Lately she has been a bit on the not so good side begging for my Greek frozen yogurt. I let her have a tiny bite the other day and I didn't think she would like the taste of it but I was sure wrong! She loves it!!
I have received some very touching emails and letters the past few weeks which has inspired myself to get busy spreading Gastroparesis Awareness. The Gastroparesis Awareness Campaign team has come up with some amazing and new ideas to help raise GP Awareness this year. Today I decided its time to take the first steps in achieving our goals for 2012. There has been so many accomplishments over the past 6 years with the team that sometimes I need to be reminded that I have a purpose in life. Maybe it was never the intent that my life be cut short by this horrible GI dysmotility disorder but instead to continue being an example for others who are on the same GP journey.
spacey
My attitude has changed the past few weeks. Its not that I don't care about my health or new problems due to my Gastroparesis progressing its just that I am tired of doctors, tests and finding out the fire in my organs-nerves are becoming further damaged. So far I have nailed the exact diagnosis on every single new symptom and problem. I honestly believe I missed my calling as a doctor years ago. Today once again I was only reaffirmed what I already suspected so in my opinion whats the sense of going through more tests and doctor visits to find out what I already know?...My friend-Caregiver brought it my attention today that he has noticed my attitude changing and feels I am losing my fight. He is a bit nervous that I might not attend my appointments so I made sure we were on the same page and in that I would go but I already know the answers. It has nothing to do with losing the fight because my boxing gloves are still on and laced tight. The fact is sometimes I get beyond frustrated with the Gastroparesis life. 
This afternoon in order to give us both a mental break we went outside to finish a few more yard work projects. I felt like the beach came to my house as my friend-Caregiver picked all the seashells I have collected over the years from Florida that were hidden under the new wheelchair ramp. When they built the ramp last year they didn't remove the shells that were landscaped around the front porch. Today I was determined to have my friend-Caregiver pick them up and place them into a tote bag this way they can be replaced around the tree in my front yard next month. I ordered a huge truck load of mulch from the city that is suppose to arrive in three weeks and the seashells will look great in their new location! Once again I will be able to enjoy the seashells and know part of the ocean will always be with me. I miss going on vacations and listening to the waves hit the sand. I am not sure if I will ever be able to visit the ocean and seagulls again but its a sad fact I must face.
I only know of two friends and fellow GP'ers who contacted me that had family gatherings. Wow! I bet if Facebook comes up with "Holiday Family Facebook Cookouts" everyone would attend! Hahahaha! No need to buy gas since prices are still going up, just log online and everyone can bring a cyber dish or dessert. 
d'oh
The last phone call was the largest Nephrologist group in the city however large doesn't always mean organized. Honestly after four hours playing phone tag with four different office workers at three different locations I wasn't even sure if this was such a great idea. If the office isn't organized it had me questioning if the doctors would be as well disorganized?...Hmmm?..I called my Gastroenterologist's office and left a message to see if they knew of any other Nephrologist's in the area but sadly there are not a lot of them. This must be a hidden specialist society-Nephrology. Hahahahaha!
Since I was too busy once I got up dealing with doctor offices my friend-Caregiver decided to jump ahead on a list of yard work projects for this week. The backyard fire pit hasn't been cleaned up in over a year and needs some serious TLC! There are tons of branches and small pieces of wood laying around the fire pit. When the time comes to enjoy it there could be instead a fire hazard going on. YIKES! Sorry, but that happened a few years ago when "someone" put a huge pile of fresh cut wood right next to the fire pit after it was lit and didn't extinguish it when they were done. I woke up at 1am looking outside in the backyard that appeared to be lit with red Xmas lights only to realize the back of the garage and grass was on fire. It only took a few hot coals from the wood to crackle and jump into the huge pile of fresh cut wood but thank goodness for my instinct to look outside and a nearby garden hose! Surely we don't need that to replay again so better safe than sorry. After two hours my friend-Caregiver not only cleaned up the entire area but also placed the extra wood near the street for the city to pick up and help turn into free mulch for the residents.
happy
We were going to do our best to attend church service yesterday evening but I was too mentally exhausted. That makes both of us! I had the wrong time wrote down for services today so sadly we missed Easter church service but welcomed a new tradition of our own at dinner here at the house saying our blessings. It was nice and something as a child I always felt made holidays seem more sincere by saying Grace at the table. Once we got up at 2pm I wasn't quite sure how the day would turn out having the first Easter in 40 years at home. The weather at least was picture perfect! I wish it would stay this exact temperature year round. Our new neighbors were even outside enjoying the weather and doing some landscaping and yard work. I haven't been feeling too well long enough to formally meet them but this afternoon we all finally met. They are the nicest couple and have such a funny sense of humor and glowing personality. In fact it seems not only our new neighbors but the ones on the other side of their house were also celebrating Easter at home. I also had quite a few friends and GP'ers who sent me holiday phone greetings from home as they decided to do things a bit different this year and celebrate at their own houses. 
Even though we celebrated Easter at home I had a list of things to do. Since it was so nice outside my friend-Caregiver played frisbee with Littleblue while Oreo enjoyed some back yard time. We took a few short walks at the park and later this afternoon went up to the cemetery to place some flowers on those who have passed onto Heaven.
Of course Easter wouldn't be Easter without the traditional basket hunt. The fur kids found theirs right away although Oreo cheated and already found his last night. The Easter bunny must had made an early stop! Hahahahaha! Funny enough I also found some empty Reese cup wrappers in the garbage once I got up but my friend-Caregiver pled the fifth. Hmmmm...The fur kids got lots of new treats and Littleblue even got a new blue frisbee.
Once they were situated me and my friend-Caregiver went to go find our own baskets. I got candy and a new Clay Aiken CD. Since my blood sugar tends to run low now its important I always keep candy around me. Sadly I can only handle two different candies and although I am tired of miniature plain Hershey bars but at least I found the new Hershey nuggets to also do fairly well. Since sugar dissolves there is less digestion needed but its still not enough to keep my sugar up so I also now use glucose tablets and gel. This is a very common symptom and problem for Gastroparesis patients. 
I had two small bites of mac & cheese and chicken. I haven't had much of an appetite lately and a few small bites was enough for me then I reached for my watered down Slimfast and frozen Greek yogurt. My friend-Caregiver enjoyed all the food and even helped clean up. The fur kids took a break from playing basket guards long enough to have their own small plate of food.
How did we end our evening? Well OF COURSE! A walk to help my friend-Caregiver work down all the food and candy treats then we got the living room couchbed and recliner together and finished up our "Ghost Adventures" marathon. CHEERS TO A HAPPY EASTER! WOOHOA!!
bright
My friend-Caregiver had to buy a few new yard tools and a weedeater so we took my crutches and headed out to run a few errands. It always feels good to get out of the house. I would love to work! I miss working! Its horrible not working but I do the best I can with life and whats in front of me. Instead of helping out in the yard I played Manager while my friend-Caregiver deweeded and touched up the flower beds and the fur kids played window Supervisor. Hahahahaha! 
My friend Kevin has been busy with his family today putting up a new swing set for the kids. His Mom has officially welcomed two new Grandchildren to the family making the total six! The nice new swing set should keep them all very happy! I couldn't believe they finished everything in one day but when you have family you have teamwork and amazing things can be accomplished. 
The yard and swing set turned out super nice! GREAT JOB KEVIN & FAMILY! They have a huge family and close extended family so it will be a large Easter gathering for them but something they all look forward to each year. 
I picked up my new prescriptions and started taking them today. Since the kidney issues haven't magically disappeared its just one more thing for my Gastroenterologist to deal with regarding my weekly Hell-In-A-Jug/Drano treatments. There is a new medication on the market he can get however it doesn't come without complications. Its injectable and "suppose" to help clear your intestines. Although they are doing their best to keep me from having to go this route it might be inevitable. For now since I just started the antibiotics they have held off my treatment today and for the rest of the weekend long enough until I am finished with them Tuesday. Funny, Tuesday? That's the same day my kidney tests come back. Mere coincidence? Maybe. Maybe not. Time will tell...
Later this evening once we got the living room couchbed and recliner situation me and my friend-Caregiver got the Easter baskets together for the fur kids. We also decided to make baskets for each other and hide them tomorrow. I got to play a bit with my new wigs and pose with Littleblue for a few holiday photos although I tend to think she wasn't too thrilled with the idea, hahahaha! 
not sure
Time to play catch up!
It looks like cooler and fall-like temperatures will be here to stay until early next week. Much dryer weather too that allows plenty of outside playtime for the fur kids. By the time its 11pm they are beat! The kitty gang have been enjoying lots of sun lounging during the day which also leaves them quite tired by early evening. Precious has been lounging with the Easter Bunnies in the spare bedroom the past few days. Pumpkin kitty has been caught by my friend-Caregiver literally laying on them. Hahahahaha! They are too funny and keep life interesting to say the least!
Honestly with the holiday weekend upon us I thought for sure we would hit lots of rush hour traffic on the way to my doctors appointment as well those who are traveling for Easter. With only 15 minutes to spare because a last minute phone call from my insurance company had me running late we still made it right on time! In fact I was the last appointment for the day not only for my specialists office but as well for the tests. BONUS! My friend grabbed an empty chair and TV remote all to himself since I was the last patient for the day. My insurance company hasn't been too kind to myself nor my specialists over the past year. In fact not only am I feeling the heat but so are my doctors and in between fighting for coverage with medical necessity testing others are fighting the insurance company on important medication coverage. Who knows what "will" or "won't" be covered today. I guess I will find out once I receive my medical claims in the next few months.
There were five health care workers who all showed true compassion and took very good care of me today! So maybe things didn't turn out as expected which is why once again I expect the worst but hope for the best but also expecting the unexpected. They needed to run further tests today to go over some problems that showed up during my hospital visits and tests. One test showed an enlarged right ovary which to most would seem abnormal but to my surgeon it wasn't because this same ovary was repaired by both of my surgeons four years ago. There were no signs of ovarian cancer, tumors, cysts, etc. GOOD NEWS! Second they ran a test to specifically narrow in on the left spinal pain that runs around my hip down the groin area and leg. It has also made my left leg continue to be numb down to my knee. What they did find during the scan and test is once one person pushed down on the exact area front to back my bowels were visibly seen fused together. My intestines are more of a tangled mess than even my surgeons expected since they did their best during my last surgery to untangle them but nope, they are fused again. This is not only causing me pain but also applying pressure to my poor spine and wrapping with them nerves that are slowly dying and being strangled. MYSTERY SOLVED! My Neurologist hit it right on the nail yesterday during my appointment because he believed it was two issues at the same time working against each other and he was right! So no ovarian cancer but one fused mess of bowels and nerves which not even the best surgeon can determine if the pain will ever ease up but now we all fully understand the importance of staying on the ole Drano treatment. AMEN! One good thing was they could see clearly through my lower bowel and were able to determine there were no perforated holes. Just another reason why I must be careful and stick on a liquid diet. 
lyrical
My friend-Caregiver initially went to pick it up for me but guess what? Since I had medication stolen from me and actually taken up to the pharmacy and filled they now have a new policy with narcotics that you must show your ID. Times that policy by 100 on my account seeing it was that one time having medically necessary medication and prescriptions stolen from me that forever changed the pharmacies policy regarding controlled substances and showing your ID. If I ever wanted to put that part of my life behind me sadly it won't be anytime soon. I deal with it every time I pick up a medication. Seeing like most who have dealt first hand with those who are addicted you hope they will change for the better and for themselves but you can't change people. Learning experience #110 on my end.
Since I finished the rest of my treatment the other day I forget to empty the rest sitting in the refrigerator down the drain. It was interesting watching the toxic mixture literally go down the sink drain and see the reaction when I turned on the water. It bubbled for around five minutes so just imagine the power it does to your insides. It sure made my jaw drop! YIKES! No wonder my stomach and intestines get so darn inflamed for the next three days and I get gastritis on more than a few occasions. No wonder my teeth are also suffering! If it can do this to your sink and drain I am sure it can easily eat away your insides. So....My friend-Caregiver picked up some new Listerine today that actually helps prevent tooth decay. Now the great question is can it stop decay due to liquid Drano treatments? Only time will tell but you can call me, "The first guinea pig" this evening.
celebratory
No sleep for those in pain so instead of tossing and turning then looking at my cell phone alarm I decided to just get up and make it a productive day! 
After six phone calls the kitchen cabinet full of post it notes slowly dwindled down to just three. One is for my tests and doctors appointment Friday, one for a meeting tomorrow early afternoon and the other is for hopefully my LAST doctors appointment next week so I can at least take a little bit of a break. Hell-In-A-Jug day is right around the corner as I am advised to go back on a strict liquid diet. WATCH OUT WORLD! This means my irritability will be in full swing! Hahahahaha! I would love to stick a few people I know on the full liquid diet just for the learning experience. Might help them to see how it finally feels living a Gastroparesis life.
