Mood:
happyNow Playing: Day 728-The Final Road To Survival
HAPPY EASTER! Wow, this is the fifth holiday since December! No wonder by the time I put up one set of decorations its time to take them down and put up another. Hahahaha!
Me and my friend-Caregiver didn't get to sleep until 4am. Well actually he dozed off at 1am but with the pain I was wide awake and just decided to let my brain get tired until I fell asleep. We have two new "Ghost Adventures" DVD's but only got through one last night. Later this evening once we all wind down I am hoping to start the second of three discs. I love the show on the Travel Channel and watch it every week. I find it very fascinating and either you are a believer or not. I have personally seen and been a witness to quite a few things to fully believe those who pass on to a far better place-Heaven still are with us spiritually.
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.
If I knew my neighbors were going to be home for Easter I would have had them over since I was already planning on cooking dinner. Since it was pizza night last night for my friend-Caregiver I decided today to cook barbecue chicken in the oven, macaroni & cheese, baked potato and cream corn.
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.
After placing the Easter baskets on the counter so the fur gang don't devour their treats all at once we took Oreo and Littleblue back outside to play then for another short walk. Even though this was the first time not celebrating Easter with our families it still turned out to be a very nice and relaxing day. We now have new friends-neighbors who plan on having a cook out soon which I think will be one of many because we all have so much in common! A picture perfect day outside, great conversation, great food and fun with the fur kids as well taking time out to visit dear departed loved ones-family made for a thankful Easter for everyone.
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. 
I "thought" I was in the clear from one specialist off to the last tests for my kidneys. I don't feel any upper left or right flank pain. I don't have a fever. The only odd thing is the past three months I have been noticing fluids retaining for very long periods of time before I am able to pass them. My friend-Caregiver has also noticed some signs that something isn't quite right. Since my other specialist felt things were mild and in the beginning stages there was really no reason for me to add another specialist onto the existing 16 but that quickly changed. Once the tests were completed I quickly got pulled into a room with a doctor who clearly asked some very specific questions then reviewed prior tests that my Gastroenterologist ran two years ago when he suspected function problems starting with my kidneys. The doctor was very honest by telling me my urine still has quite a lot of blood in it with no signs of kidney stones, UTI or any other infections based off of a list of tests recently done. There is problems with the function of my kidneys or more like "lack of." I wasn't sure where she was going but felt maybe I couldn't handle anymore bad news so I said, "Basically what you are saying is my kidneys, both of my kidneys are not working properly and its very serious." She shook her head in agreeance. The doctor then said, "Your Gastroparesis can affect many GI organs due to the extensive nerve damage. You are a very complex-complicated case. Retaining a large amount of fluid in your kidneys is not normal and usually is found in those who have declining kidney function. I understand your concern in not wanting to add another specialist and clearly you already have a great team of doctors but you will have to start seeing a Nephrologist." 
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.
sharp
This is getting old!!!! I feel like I have plenty more patience to give but sometimes one pain affects you completely different than the others when its in your tailbone area and wraps around your entire leg. I can't sleep on my left side, I can't sleep on my back and I can't sleep on my right side unless I continue to hang my left leg over the couch or rest it on the step stool. The living room is once again looking like a make shift medical supply store. Hahahahaha! Add crutches now to the mix. Whether I like it or not I must admit keeping weight off my left leg and spine is a heck of a lot better than constantly enduring the stabbing hot nerve pain! The wheelchair is a great idea but its still uncomfortable to find a position that doesn't make things worse.
With not much sleep last night I still managed to get up once my cell phone alarm went off at 1pm. 1pm to most is a time you wake up during vacation but trust me being sick and disabled is NO VACATION by any means. Its exhausting but far from fun. Amen! I had post it note reminders waiting for me once I got up and I wanted to try getting through most of them before my Neurologist-Neurosurgeon appointment later this afternoon. This week and next week I like to call "Hell Weeks" but I must keep in mind all bad things eventually do come to an end. My friend Kevin always makes sure I keep those exact words in mind when having a stressful day. 
So we left my specialists office with exactly as expected-more information and medical education. Maybe not a cure or a magic pill but remember I am the type of person who does better "in the know" than the "unknown." Since I still have quite a few tests and doctors appointments over the next few weeks they will wait to see what things show and then my team of amazing specialists will take things from there. Its a very strong possibility there isn't anything further they can do but try to manage the pain. I am looking at a 90% possibility. If only my tired body wasn't so tired they could discuss surgical options but those are out of the question so for now I continue to take things one day at a time.
lazy
With two specialist appointments lined up this week on top of other things that must get done I am already feeling mentally exhausted. Its one thing to be physically exhausted but a completely different situation having both at the same time. I didn't get much sleep last night due to nerve pain making its way around my left leg. Luckily my Neurologist-Neurosurgeon decided to bump up my appointment so I see him tomorrow. He totally understands the nerve pain I am experiencing but needs to make sure I continue having proper blood flow to my leg. This afternoon I did my best utilizing the crutches and although it did help a bit with the lower spinal pain it also was tiring as heck so I quickly gave up and resorted back to my cane. 
Last night we had some wicked storms and once again the summer like temperatures have made their way back. The constant change in season is starting to effect all of us so we decided to have a very lazy evening...My friend-Caregiver's allergies are finally getting to him so he is even utilizing wearing masks outside. The grass grew back in a matter of days so once again it will need to be cut. Masks work great but not 100%. I have a hunch it will be a restless night of sleep for him tomorrow and a very exhausting week for me.
"Man - a creature made at the end of the week's work when God was tired."
cheeky
Wow! We are going on the fourth month of the year 2012 and honestly I can't even keep my days straight anymore. Hahahahaha! I thought today was Monday and asked my friend-Caregiver once we got up mid afternoon if he got the mail yet. Ummm...Its Sunday not Monday. OOPS! My days just blend together anymore same with it being April 1st when I was just getting used to it being March. 
So in between preaching visitors when least expected popping up on a weekly basis around the neighborhood we now have another church wanting to build parking lots outside our backyards. Some neighbors have told us the best way to counteract the behavior of religion gone bad is:
I have cleaned up letters, note cards, pamphlets, etc over the past few months that now I might just get some Gastroparesis Awareness Campaign gear together and educate them on true suffering. Amen.
Hee,hee,hee,hee,hee... 
d'oh
It's amazing that even I quickly forget in a blink of an eye that ummmm...MY GI TRACT DOESN'T WORK! DUH! Tell that to Uncle Ben who happens to be the most wicked Uncle I have ever come across! Three spoonfuls and that's all she wrote folks and if this box of rice looks huge next to this kid imagine how HUGE it feels right now in my stomach. UGGGG....
I won the "GAME OF LIFE!" WOOHOA! Its about the only game of life I am winning, hahahahahaha! If only our lives were as easy as the game huh? 
Oreo and Littleblue sure have been loving this weather and playing outside however things are about to once again change with more rain. GEES! Just when the ground was finally dry so looks like they will be taking a break from outdoor fun and instead have to be happy with short walks to the park across the street. Oreo is doing much, much better with his seizures. He still gets them from time to time so its important to keep stress at the house to a minimum. I think we both could really benefit from it! Amen.
A dear fellow GP friend of mine named Jennifer sent me a really, really funny and cute card about doctors today as well a beautiful bouquet of my favorite flower-sunflowers in various colors! Thank you so much Jennifer it was a huge surprise and you certainly had the right flower, love them! Its so nice to have my GP family and all their inspiration that helps to keep me motivated. Now I can wake up next to my couchbed and look at the colorful sunflowers and the best part is they smell great too!
