Mood:
chillin'Now Playing: Day 771-The Final Road To Survival
You can write it out, map it out and even plan it out but sometimes life doesn't always go as planned.
Take today for example!
This was "suppose" to be the day of new beginnings. That next chapter in my life was "suppose" to begin today. I was super excited and looking forward to taking the first steps in closing one door and opening another but guess what? Things didn't go as planned. The day didn't go as planned nor anything else today went as planned. Even all the post it notes in the world couldn't had predicted today's events.
I laid down on my couchbed rather early last night. 11pm to be exact due to my head was pounding and I had a rather strange aura/sensation. What I should had known was this "aura" was a migraine with seizure waiting to happen. I took two Tylenol and put one ice pack on my face and one on the back of my head. I then got my extra large heating pad out to place on my upper back however I was already a bit too late. When seizure aura comes on you only have so much time to take your seizure medication. I was unfortunate when my seizure problems started four years ago to get the double whammy-seizure with migraine. Its hard enough dealing with any seizure disorder but worse trying to decipher if its a migraine aura you are feeling or a seizure aura. Mine last night into the early morning hours was both.
Let's just say if I didn't have my dear friend-Caregiver living with me I would be SOL! Even with me laying on my couchbed and him sleeping two feet away on the recliner still doesn't prepare you for a seizure. My warning should had been the two hours worth of tremors that would come and go, come and go but didn't actually "go" anywhere. Instead where they went was into a horrible seizure. So to make a long story short around 4am my body went into a full seizure in which I accidentally knocked over my side table full of liquid drinks then since I had my seizure laying on my back I vomited what fluids were in my stomach. My friend luckily was right next to the table that knocked into him so he quickly woke up until the seizure and waves of tremors subsided. Unfortunately after you have a seizure your body locks up and muscles are tensed up so there is no walking.
Needless to say instead of me attending the meeting/appointment that was scheduled two weeks ago my friend had to go in my place. I won't be opening that new chapter in my life just yet and heck with closing any doors. I couldn't even come close enough today to reach the handle. Hahahaha! Instead I must wait another week and pray my Gastroparesis and other connected problems like my head-seizures calm down over the next several days. Its a good thing I have an amazing team of specialists who are quick on their feet and called in refills of my seizure medications since they now need to increase the dosage. Spring and summer has always been the nightmare time of year for me because light is my seizure trigger along with allergies that my compromised immune system has to endure.
With any bad day there is always a silver lining! My doctor called later this afternoon with my lab work for my kidneys. Luckily I won't have to see another new specialist to add to the current list of 18 and instead I will just have to follow up additional testing with my Nephrologist. My friend also upon getting the mail brought in a package filled with amazing news in the fight for Gastroparesis Awareness. Indeed the Gastroparesis Awareness Campaign Team and GP family should be very proud!
Gastroparesis+Drano aka Hell In A Jug+Relistor+Migraines+Seizures=A Very Bad Day. 
bright
I have quickly come to realize that when people alter their outer appearance it also alters their soul.
In the world of pain and suffering, true heroes can be found...providing special comfort and relief. They choose to make a difference, regardless of the cost...always willing to help others in their grief.
not sure
It took me a few days but I am starting to wrap my hands around the inevitable medical changes I am soon to face. 
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. 
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.
