Mood:
sadNow Playing: Day 709-The Final Road To Survival
I literally ate my last words with a dear friend of mine last night by saying, "If this pain continues another day I will be right back in the hospital." Not only did I jinx myself but it came true.
Around midnight the pain got unbearable and I hit my limit. I contacted my friend-Caregiver and they were able to use some personal time from work in order to come home and take me up to the ER. The ride in the car was horrible and I couldn't get comfortable. I tend to go with my gut and it has never yet to fail me. At least the hospital isn't too far away so once my friend-Caregiver pulled up to the driveway I grabbed my cane and out the door we went.
This surely seemed like a full moon night because luck was not on my side. They took me back within five minutes into a room and started an IV line and fluids. The nurse went over my medical history and prior surgeries. They said, "Boy, do you have some bad luck!" Hahahaha! No lie there! Once they took my vitals and six vials of blood the doctor came into the room. The pain is now on day five and he was very glad I came up to the hospital. The next part of the examination started to turn for the worst. I literally was shaking and trembling in the hospital bed. My friend-Caregiver now became WIDE AWAKE when I was told I will most likely end up in surgery today. It seems I have something really bad going wrong. Not only that but once the tests came back and my catscan all the years of family comparing my Idiopathic Gastroparesis to those with cancer literally got rammed down my throat. I always couldn't understand why people compared my condition to cancer. Not only is it a disgrace to me but the person I am being compared to because every medical condition is totally different. A midnight trip to the ER ended up going into the morning hours. I like to say it was the second worst experience since being diagnosed over the last seven years. The worst experience was after my last surgery when everything that could possibly go wrong went wrong.
I was only released because they felt at this point their surgical team could not perform surgery due to problems not being able to be fixed. Both of my kidneys are equally losing function and came up on the catscan not looking to be in the best of shape. I had worse news after being told there were lymph node problems with two different types of lymph nodes that only those with Lymphoma/Leukemia get so instead of surgery I was directed to go to my specialists Monday. Sigh... The pain I was told would not get any better and most likely worse. I was given various options to help 'maybe' control things but it wasn't a promise and it could make my Idiopathic Gastroparesis worse so I decided to just grin and bear it. Sigh... The spinal issues? Least of my worries now. The Hell-In-A-Jug treatments? On hold and another least of my worries. So after getting back to the house which I was extremely thankful for after many prayers in the emergency room it was already 8am. Not only was I mentally and physically drained but so was my friend-Caregiver.
There is a lot going on as I face a stressful week ahead deciding what I do and do not want to be told. I always said, "I do better knowing than not knowing" but even I am not sure if I want to find out more about this monster. The kidney problems are a result of my Gastroparesis progressing. The lymph node issues are a result also of my Gastroparesis progressing and causing further complications which had the catscan picking up posterior intestinal and abdominal problems. My friend-Caregiver was advised to watch me very carefully over the next 24 hours and any signs of vomiting, nausea, bleeding, worsening of pain or fever to take me back up to the hospital. Not that this isn't hell enough and stressful enough to deal with but now add some disheartening communication from people who know my family.
Here We Go Again...
To some this isn't the place to do an apology but since there are so many people involved right now I wanted to personally apologize for everyones actions. Over the past four days I have been flagged regarding some disturbing behavior. I do understand those who are contacting me are very concerned that the stress will jeopardize my current condition as they are looking out for my best interest. Some feel it is their responsibility to watch my back as they continue showing their concern regarding actions by my family. I personally do not condone this behavior and completely understand every ones concerns. It is also concerning my specialists who work extremely hard keeping me out of trouble and alive.
My friend-Caregivers family has taken it upon himself to step up and help me out. It is a very noble thing for anyone to do. Those who interfere with the mental and physical health of a person who is sick is not only placing stress on the patient, Caregiver but also the patients specialists. The stress is causing me further harm. I do not agree with anyone who feels causing stress is justified no matter what the circumstances. This has continued for a very long time and now with my condition progressing it has made others step up to the plate. Some of the actions are being observed by others who find it very disturbing. What is harming me is now provoking them.
I don't understand why anyone especially family would use others as a scapegoat for their lack of support for another member who is sick. Some of the things I am being told are just down right cruel and inhumane.
"How do you feel about your son living with a woman that is so sick that she can't get out of bed."
Instead of being supportive I am now dealing with guess what? More stress.
I want to personally apologize to those who have been put into the middle of lack of family support issues that should have never been put in the middle in the first place. I want to apologize to my friend-Caregiver and his family. The biggest problem I have with this ridiculous behavior is once again not only putting me down but anyone else who is chronic or terminally ill and has kids.
Lesson: Do not act like this because the universe does not tolerate taunting, tormenting or hurting those who are already down and are sick. Again I want to sincerely apologize. Although I can not stop the actions of others sadly I feel this behavior will never stop as my condition progresses. Surely if someone can take the time to be inhumane they can take additional time to prove to others they are human.
down
This is my kind of weather in the low to mid 60's! Now if I can just get my body to heal and the pain to ease up long enough to enjoy it. My friend-Caregiver finally put the last touches on the new gym equipment. Since he takes care of me its easier for him to work out at the house in case of any emergency or if I need help with something. 
Now the GP room is also a fitness room! WOOHOA! I sure do miss working out. I worked out for years up until I got sick. You either find a joy and passion in it or you will end up giving up and slacking off. For him its a great way to relieve stress and let me tell you he has been put through some relentless stress lately not by my condition but by the actions of others. 
Speaking of NOT GOOD...After talking to a few fellow GP'ers and friends of mine I told one, "If this pain doesn't start easing up soon since its now shifting to the front I am going to end up back at the hospital." I can take a very high tolerance of pain but for some reason my gut is screaming something again isn't quite right because the same pain is still lingering but now it hurts to even breathe in or stand up. With my friend-Caregiver at work right now this might become a very, very interesting evening. Only time will tell...
sharp
I didn't get much sleep last night and tonight will be no exception. I once again couldn't get comfortable. I can't do treatment because of the pressure placed on my lower spine due to all the damage. Try sitting down whether alone on a toilet seat and making 24 hour bathroom trips after treatment-NOT. As per my specialists instructions today, "We will have to watch, wait and see on how your body responses over the next 48 hours." If things get worse its right back to the local ER.
This isn't going to be a fun next four weeks dealing with spinal trauma on top of my normal GP problems but where there is a will there is a way. I consider the last few days of stress a minor set back. Hey, it happens because life does involve both good and bad days. Per my doctors suggestions, "You must fill your life with a good support system not those who only want to bring you down." My friend Kevin said it and said it best, "If a sibling refuses to treat you like a normal human being and can't offer support then you need to quit trying. Why would anyone take any sibling constantly bullying and belittling another sibling especially when they are fully aware they are sick is just ridiculous." He always told me to never allow my condition to make me weak because I have always been a strong person. Kevin remembers my days working and traveling while hiding my illness. He has seen my determination with the situation because I kept trying but as he said, "You wouldn't put up with foul behavior from friends or strangers so why put up with it from a sibling? Because they are family and we always give family more than a few chances but their chances are up. Its time to move on." 
irritated
Maybe instead of all these vitamins that might had been a great idea that obviously aren't working I should instead just take some of this left over Miracle Gro and drink it! Hahahaha! Heck, it might get my hair and nails to start growing again! Yes, I am still taking everything at least until they are gone but at this point since I see nor feel any change I highly doubt I will try them again. I used to do liquid vitamins a few years ago and back then I even gave up because it didn't help matters. At least I give myself some credit for trying again.
I have used enough IcyHot, Activon, heat wraps, ice packs, Aspercreme and Tylenol that still here I am with the same gnarling pain. 
It seems my poor spine since losing the gel discs between the vertebra bones has gotten worse. I now have pretty much lost all my lumbar discs and the once small fracture has also gotten worse. I ended up as well with a spinal sprain and broken back-nice term to say sorry but BOY YOU ARE SCREWED! The doctor couldn't even look at us with the news but only said, "I don't know what to do for the pain. I have no suggests for sleeping position because you have such extensive damage to your spine and back. I understand they can not risk surgery due to your pre existing conditions but the pain isn't going anywhere anytime soon." He was surprised I was still walking after looking at the tests and xrays. I think that made all three of us. Its still strange to image that is my spine! I said the same thing after my GI nightmare surgery four years ago and here I am saying those same words again. "Is that my body?" 
A normal spine would be nice then I wouldn't be faced with knowing I will be wheelchair bound by the end of the year or sooner. It would be nice to have a normal GI tract and organs so at least I could eat to my hearts content and take some of this bad news out on a half gallon of ice cream. Instead I took the news like a pro and nodded my head understanding that once again things aren't in my favor. For now all they could do is find a way to get the blood flowing to my damaged spine with three different medications. The problem now is the medications can cause reactions with the Drano aka Hell-In-A-Jug treatments but right now I can't even sit on the toilet to urinate without wanting to climb the walls so how could I endure treatment to start with? 
surprised
The temperatures are still in the mid 80's but hopefully things will change by this weekend. At least they are saying so but with weather you can never predict the unpredictable. The kitty gang have been enjoying the afternoon sun upstairs in their huge cat tree. Since the large bedroom window is facing the backyard and woods they all sit there and watch the birds and squirrels all day. Boy, they still have an easy life don't they?.
My friend is even starting to grow tired of the unnecessary stress and drama. What people don't understand is the responsibility placed on those who take on the caregiver roll. Not only do they have to protect the person physically but also mentally. My friend might had not been there once but he vows to never have it happen again. My condition at this present time requires someone staying with me. There is no way I could do it alone. My two other friends I keep in close contact with here in the city. They are very aware of my Gastroparesis and are ready when needed to step in when things get to the point that I need extra help.
d'oh
Where else but Ohio can you have snow then the next week summer weather and 85 degrees? 
I got some beautiful red roses today and a very nice card in honor of my GP anniversary from a dear friend. Thank you sooooooooo much! You made my day and brought a huge smile to my face. Its nice to know there are people out there who still treat you as the person you once were before becoming sick. I sure wish they could be a lesson for others. Amen. I have had a few old friends come out the woodwork over the past six months. I like to call them the "Houdini Friends." Those who disappear as quickly as they pop up in and out of your life. Maybe it was a guilty conscience or just curiosity that made them magically appear like nothing happened but a lesson learned as I resort back to watching who I trust. I have had enough hurt in my life and I don't need "Houdini Friends" that come and go when they please. Instead I should take that time and invest it in my real ones. Those who continue accepting me at face value even while being sick. A friend of mine I have known over the past 22 years gave me a few words of wisdom, "If they weren't there for you when things got tough then how in the world can they be there for you now? Look at the once again disappearing act and quit setting yourself up to get hurt." Great advice and once again lesson learned! 
quizzical
It was the dreaded day! Another day dealing with my teeth. Another dentist appointment. UGGG! So far this year I am on 2 dental repairs due to my GP and darn Hell-In-A-Jug treatments literally eating away at the enamel. Thank goodness though that they were able to work me in later this afternoon so that gave me time to catch up on some much needed rest.
So after two hours and three teeth later I can now take a short break for a few weeks before heading back so he can repair another tooth and anything else that might be going on. Thank goodness for a break!
At least its easy to tell what part of the refrigerator is mine. Hahahahaha! I only take up the lower shelf which is enough room for all my liquids. Its literally going to be a Slimfast way of life whether I like it or not. Gatorade has been very hard to consume on a daily basis although I know its important seeing I lose so many electrolytes during my weekly treatments. Gatorade makes me severely nauseated and now since Slimfast changed their formulation I have to literally water down half the bottle. What does work with Gastroparesis I guess is the question?..
special
I have lost family. I have lost friends. I have lost a spouse. What I have not lost is my pride and will to live. That is something my GP will never, ever take away from me. Today I celebrate 8 years of LIFE. Thank you everyone for your supportive and loving words of encouragement today and through out the years. Gastroparesis has indeed opened my eyes to the world and what it means to care. Kindness comes from those you least expect but in the end you realize who was there for you all along. 
lucky
It's St. Patrick's & luck of the Irish day! 
Once I finally got some GP relief it wasn't till 3pm by the time I woke up. The animal gang were ready to run in the backyard and take out some of their energy. I didn't see any leprechauns outside nor a pot of gold but I am still alive and that to me is priceless! Amen! I am determined to keep up with the holiday tradition and head out later to celebrate the lucky day. Maybe as well Lady Luck might be on our side since my friend had a few extra greens$$ and wanted to head out to the casino. It takes a bit now to get my body motivated so I wasn't sure by the time I took a shower and got dressed if I would have enough energy to spare for this evening but you only live once and I wasn't going to dare pass up celebrating St. Patrick's day!
The fur kids had on their holiday festive attire and greeted us at the front door. They are so used to their Mom being home that now they wait on the couch looking out the window to greet me once I return. That is true dedication! The rest of the evening I decided to have a movie night and RELAX....Cheers to having a great St. Paddy's Day!
happy
If this St. Patrick's day weekend turns out anywhere close to the shade of green like the summer-like grass quickly growing outside (due to this crazy weather) then its going to be one LUCKY WEEKEND!