Mood:
hug meNow Playing: Day 711-The Final Road To Survival
Even after setting my cell phone alarm with three reminders there was no need because I didn't get much sleep. I was up every other hour. My friend-Caregiver said, "You look beat but I guess things could be worse and you not being able to get any sleep but at least you are getting a bit here and there." I agree although I am mentally and physically beat!
Its been a week since my spine decided to shift and POOF! things forever changed. This also means things have forever changed with what my life used to be like including normal daily activities. Forget that new bike to ride this spring and fall. Forget wearing all the cute spring and summer sandals with any sort of heel. Forget having a 'me' day playing my own manicurist. Forget putting on my own shoes without finding a creative way to put them on myself. Now taking a shower and shaving my legs is a huge feat! I was told by my Neurosurgeon/Neurologist that the damage to my spine is done. They can not help nor fix the problem. The numbness that started at the top of my left leg has extended to my knee. There are times I am finding myself having to pick my leg up from the nerves dying but guess what? Deal with it! I only say this because things are not going to change and either I cry and act like a big baby or suck it up and act like a big girl! I chose the latter of the two. Hahahahaha! My friend-Caregiver is even getting a bit creative in order to help me sleep on the couchbed and recliner. Since the spinal damage is now predominately worse on the left side I must hang my hip and left leg over the couch or chair in order to ease the sharp nerve pain. This involves using a step stool with two chairs for elevating my hip/leg or using a chair and tube socks tied to create a sling to rest my leg. Maybe we are onto our own self home medical equipment store! Hahahaha!
I am still playing catch up today from not being able to contact my specialists yesterday regarding new findings during the hospital emergency room visits over the past week. With 5 possible specialists to handle the new connected GP problems they are also trying to figure out who is best suited to take things over right now then who to pass me back onto. Its like playing musical medical chairs GP-STYLE! Since my intestines don't work without weekly treatments its still important to force flush them out so I don't perforate a hole in my intestines. Doctor #1 advised me today that I must continue treatment even if I can just do three to four glasses one day and two the next day on top of a handful of over the counter medications to keep me out of trouble. Since my Idiopathic Gastroparesis is clearly to blame for my new problems as it continues to progress there is nothing more they can do for my kidneys that are not working properly. I had a hunch when drinking decaf coffee at 2pm and not passing it until 2am something wasn't quite right. Guess what? It isn't and my gut once again was correct.
My Oncologist/Hematologist has the job of taking over my troubled lymph nodes-two different sets that are working against me which are connected and related to those who have Lymphoma/Leukemia. My other specialists will not touch this new problem area and rightfully so until my Oncologist/Hematologist passes my care back to them. Not that I don't blame them. Its called, "Liability." Most feel over 14 specialists is a lot or too many but after many years it is proof that Gastroparesis invades various organs as it continues its path of destruction. Each specialist has an organ that he/she manages and treats when symptoms arise. They all work as a team and today they worked once again very quickly as they exchange notes and stay on top of things. My Psychologist will also be helping to continue keeping my attitude in check and spirits high in order to not allow this new list of problems to suck me down a never ending hole. Amen.
Me and my friend-Caregiver did discuss limits to what I 'want' to be told. I have my boundaries set in sand that will be discussed over the next month with my specialists. I always do well 'knowing' but at this point surgery is out of the question so is any form of chemo or radiation if ever needed because my immune system is already extremely damaged and compromised by years of Idiopathic Gastroparesis. Once again I was told, "No ER surgical team will operate on you because you are too high of a risk in not making it through a surgery. The hospital team wasn't comfortable. Your own surgeons are not comfortable. Your other specialists are not comfortable." They are more than ready to help me with pain management but my philosophy is if I mask the pain then how the heck will I know when to head back to the hospital? POINT TAKEN! So I have decided to suck it up and deal with the pain. So far on a scale of 1-10 it has stayed on a steady 8. Thank goodness for having a high tolerance of pain!
New problems mean new challenges. The new diet has been tough and I was never one for yogurt so my friend-Caregiver picked up some new frozen yogurt flavors today. The masks are hard to get used to and I sometimes forget to put one on before I walk outside but keeping my immune system safe is a must! Same with the darn cane that is already hurting the palm of my hand. If I could have a house that is one level with an open floor plan and the washer/dryer upstairs things would also be a million times easier. Little things you realize are important but only after life changes and you are faced with a new set of medical rules.
One thing I do remember and always keep in mind is that your attitude can either make or break you. Today at least I found my sense of humor again and my fighting spirit. It feels great to have you back in my life!
"Its during our darkest moments that we must focus to see the light."
blue
I am so so so so so so so so tired of the stress! 
sad
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. 
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. 
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. 
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. 
