Mood:
not sureNow Playing: Day 768-The Final Road To Survival
It took me a few days but I am starting to wrap my hands around the inevitable medical changes I am soon to face.
I saw my Gastroenterologist and his assistant Thursday and then saw my other specialist Friday so they could run another round of tests on my kidney function. My kidneys are not functioning properly so after four rounds of tests and three rounds of medication not working I have to go back to my Nephrologist then see another new specialist in a few weeks-Urologist all of course GP related. Not sure what they can do at this point but unfortunately I must go through more extensive and costly tests...
My Gastroenterologist appointment was Thursday in which I was told my colon must come completely out. I have far too many narrowing passages and kinks with my intestines that it is causing partial obstructions. The other problem is parts of my colon are dying which can cause dangerous toxicity in the blood. I wasn't expecting the news however I knew things were not getting any better with my paralyzed intestines. My doctors said, "We only put in place temporary bandaids over the past eight years but now the bandaids are no longer working." The dangerous lymph nodes inside my intestines luckily are in the beginning stages and isolated in which my Oncologist/Hematologist doctor believes is in early stages enough to get that bad colon out. They did want Cleveland clinic to do the surgery however my body would not allow for the travel so I am very fortunate to have an amazing new specialist/surgical team who do nothing but colon surgeries here in
Cincinnati. I am scheduled to see my new surgeon and her surgical team in two weeks however it will be a step by step process with additional testing they will need to perform as well go over all my prior medical and surgical reports. I also had to start a new liquid diet a few days ago in order to get my body ready. With that being said not that a inevitable high risk surgery isn't enough to worry about but my mind also has to also be in the right place. Stress levels that are way up there need to start coming way down here and now!
The peace I have is knowing there is an amazing team of 18 specialists who all give 110% of their heart and soul in order to help me live the best life I can and truly CARE! Besides my specialists there is a lot of work and support that will need to go into the step by step process before and after surgery. Either that external support system behind the scenes are "in" or "out." I hope to be pleasantly surprised although expecting the worst but hoping for the best. I still have faith that people can change but only time will tell. As for now my friend-Caregiver has his list of duties to make this as smooth as a process it can be without any stress involved. Its amazing when my doctors told us how much internal damage stress can cause a pre existing condition so this time I am listening and staying with the no-stress program.
The goal now is to shift my attention by preparing my mind and body for surgery. The final road to survival.
They are just the cutest! His own fur kid enjoys watching the gang outside playing during the day while Mom stands close by protecting them. He said, "One day they just appeared and have been hanging out every sense." Hopefully Mom will continue taking great care of her little ones and they will find a new home soon before the summer heat arrives.
With a ton of things weighing on my mind regarding the house, moving and major life changes I added another one that trumped the rest this afternoon. My specialists appointment went as expected but with one huge twist. It seems the "temporary bandaids" for my paralyzed intestines aren't working anymore. In fact things are progressing faster than expected which is leaving me more sick than I already was to start with. My mind is still in a fog from the appointment. The only thing I can say on my blog today is I will once again have to endure another major surgery. Todays news has also trumped the decision of moving this month. In fact for my health sake I will need to hold off on things until the first of July. My Gastroenterologist also had reports and letters from my other specialists including my Oncologist/Hematologist which clearly explained the severity of things and the need to start getting my body and mind ready for surgery. Maybe once I can wrap my brain around things over the next 24 hours I can explain to others in further detail but for now its time as my doctor said to take that stress level from all the way up to all the way back down. DITTO! 
One hour me and my friend-Caregiver are up then the next minute we are down. This is NUTS! The stress is off the charts and I am not sure how much more house drama I can take nor others adding to my stress. Surely I just need to learn to hit the ignore button and walk away from additional stress brought on by others. For now there are far more important things to worry about such as where to move, if I can move and whether or not my body will allow for a move. My friend's buddy at work has family who owns a construction company that has offered their heart, time and resources in trying to fix some of the home water damage issues from all the excessive rain we have endured the past few months. What we really need isn't a few people to help. What we need is a "TEAM!" 
The strange bruising which as of two months ago has a rhyme and reason due to my lymph nodes in fight mode is once again flaring up not that anyone should be surprised. Especially me. Can I do this huge move? Will it be safe? What if we stay at the house during repairs? Will it put me at further risk due to the hidden mold? Question after question after question have been filling my days along with the physical stress of constantly having to be on the go. Where is help when you need it? Too busy to care and too busy to lend a hand. That's where. Negative attitude? Sure. Who wouldn't with the situation going on? Not everyone can be a great actress and if so I guess you won't be seeing me on any soap operas or block buster movies anytime soon. Hahahahaha! I see my Gastroenterologist tomorrow and boy! do we have a lot to talk about. Maybe he can give me some insight on the boundaries that will need to be set being sick while trying to get past this unfortunate house situation. Amen. In the meantime if "help" can find us we are only a phone call away...
energetic
After one heck of a month and more madness to follow I decided this evening to treat myself to a much needed pedicure and massage. Not only was it a great idea but I had the entire salon to myself! Sooooo worth it!! Now my feet are once again happy and if they could talk I bet they said, "THANK GOD! I NEEDED THAT!" Hahahahaha!
My friend-Caregiver decided to stay at home and start mowing the grass because he knew I needed a huge break. When I got back home it was once again time to get back on my feet. It was also time to do another round of injections. Once I finish up this last box at least I can tell my Gastroenterologist I tried the entire prescription. Even the defective needles like tonight. YIKES! The needle fairy must had once again been looking out for me before I injected it into my stomach. 
Its just been another one of those days but not to fear eventually the end of stress will be here.
"When life knocks you down, you have 2 choices. To use the little strength you have left to fight your way back up, not knowing when or why you could be knocked back down again, or just stay down. I guess that is why we call it courage, the courage to stand back up when life gives you hundreds of reasons to stay down."
The fun never ends. Honestly I just need a mental and physical break! They said it takes a full year to overcome extreme hardship and I couldn't agree more. I don't have time for anything but digging myself out of this nightmare house and water damage/mold situation. Just when we think things can't get any worse they do! S I G H...One minute we are up then the next minute we are back down. I can't even remember the last time I took in fluids and my poor immune system is finally showing signs of stress. This evening I noticed lots of bruising all over my body. Like I said and I will say it again, "This can't be good on someone normal and I can't imagine what its doing internally to my tired body." 
So after another extremely long day getting no where fast and more than a million things to do on a full plate with a tired body I am lucky to had finally sat down to rest by 3am. If anything good to come out of this day was a huge air purifier system, three cans of Lysol and the will to survive. AMEN!
amorous
I had planned on getting lots of rest however my cell phone started ringing around 10:45am. With the house issues, mold, repairs, etc me and my friend-Caregiver have decided we need to keep our options open and possibly find a temporary short term lease rental until the house is repaired. We are hoping the mold issues can also be resolved but until the air quality company comes out next week and runs their own tests we won't know so its touch and go. The stress lately could knock any healthy person off their feet so its a good thing Gastroparesis has made me one heck of a strong woman! Its also been mentally and physically exhausting. 
Cuddles kitty got sick a few times through out the night and still hasn't been feeling good. The Veterinarian called back with some of the lab results that showed elevated levels with her liver but he doesn't feel that is whats causing her heart murmur. Age is a huge factor and one I must remember since Cuddles is 14 years old. The other test results won't be back until tomorrow. For now he has us keeping a close eye on things and if she still hasn't started eating or drinking by Monday afternoon we will need to take her back to get rehydrated. Her siblings have been taking turns sleeping next to her in between us doing our checks making sure she is ok.
I am hoping to get a well earned "ME" day later this month. Hopefully by then things will wind down. If you think its tough being sick just imagine tackling the other life issues with the house and finding a place. Harder doing it with just the two of us since most of my friends live out of state. Those who do live in state are busy between work and their own lives. Through life's challenges you truly realize who are there for you. Thank you to those who never let me down and show me what love truly means.
hug me
In between the constant cleaning, sanitizing and outside repairs things just don't seem to stop. I don't see any relief in sight unless some sort of miracle happens and the mold fairies make this nightmare stop. AMEN! My friend has also been watching the rapid changes now going on inside the petri test dishes. His comment today, "How depressing." More like, "How stressing!" We might all be better off and far safer living in that huge tent outside because the air actually might be safer than what is inside this house. Now I must wear a mask even inside my own house. Better safe than sorry until things are further checked out with the air by professionals next week. In between a million things to do mentally and physically I am also still enduring the Drano bounce back which hasn't been easy. I don't know how I do it but I just do.
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...
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...
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. 
"FUNNY HOW ONE CAN START TO COMPARE GENERIC DRANO TO NAME BRAND DRANO. CLEARLY I HAVE CONSUMED WAY TOO MUCH DRANO! HAHAHAHAHA!"
incredulous
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. 
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...