Expect Changes In This Crazy Gastroparesis Life.
Now Playing: Day 553-The Final Road To Survival
It was a night full of thoughts. Many thoughts not only going through my mind but also my friends mind. Next month brings not only many changes in my personal life but as well medically. I will not be able to continue being that stubborn girl who still tries to conquer the world sick but a girl who will have to limit life. This means I need help. I need help around the house inside and out. I can't rely on my current situation with my ex-roommate because they opted to care months ago leaving me on my own. It sad when someone who had so many friends now only has less than a handful willing to help out in this city.
That person would be me.
My friend is gracious and kind enough to lend their help and support starting next month. This also means for the time being I will have a new roommate. Honestly it will be a BLESSING and HUGE RELIEF having someone help out around the house. I can now finally hang up the rest of my maid uniform and not be taken advantage of anymore. My body is tired and although I can sure fool everyone with my outer appearance whats going on with my inside is nothing less than a huge hidden mess. Hair, makeup and clothing makes for a great cover up but I can never, ever fool my specialists.
I had my Neurologist/Neurosurgeon appointment this afternoon. My friend stayed over so they could take me and be my support. I didn't get to sleep till 3:30am since I had so much on my mind and still dealing with the Drano aka Hell-In-A-Jug side affects. Most if not all of my specialists never run on time. Why should I then be right on time? I wasn't today and instead ran ten minutes behind but that's ok seeing he was running thirty minutes late. Once the nurse called me back into a room it was the usual routine-vitals, medical updates, etc. Luckily I only waited around three minutes once the nurse left the room before I heard a knock at the door and in walked my doctor. He asked how my seizures were doing since my last visit in which I told him, "Not as bad since the change of season with less sunlight and heat." Excessive light and bright lights are my trigger. It seems the tremors and seizures I am now experiencing are from the Drano I am enduring twice a week as the toxic mixture throws my electrolytes for a nose dive. Just part of the hidden risks but I wasn't too surprised.
My doctor began to put the disc in his computer viewing images of my spine. I wasn't expecting any good news today because there has never been any good news over the past eight years. One just takes a huge breath and gets themselves prepared. Today was no exception as I learned more problems I am facing as my body continues to turn against me. My doctor looked at me and said, "Your spine and back is a mess. You have some really bad problems going on. Not just one but many. Your symptoms you have been expressing to your other specialists are very real and accounted for as your scans and x-rays show numerous problems that I can not fix as a surgeon. The damage has been done. You don't deserve what you have been going through. You only deserve the best and I will do everything I can to make you comfortable as possible because sadly I can not fix things."
I was expecting bad news and really wasn't shocked at all what was being told to me because as someone once said, "She has been handed a cruel deck of cards." Amen. However its how one takes all that bad news and what they do with it that counts. I take it with a grain of salt because you can't give me anymore than what I have already been put through with my unique medical situation. My doctor began to do a few other tests and looked through other records then we sat back and had a nice heart to heart chat. I explained my concern with my legs going out, not being able to sit for long periods of time and not being able to handle sitting in a car for more than an hour. I also told him about the times recently that I had to move my legs manually because I couldn't move them. What I didn't realize was I lost all disc in my lower back and now I have not just one fracture but two. "You are sitting bone on bone. Your lower back support and cushion between each vertebrae is gone. I can't replace bone. Each time you hit a bump on the road you are putting pressure on a very fragile situation. Things will progress in time but it seems to be happening very rapidly." He next had me stand up and bend forward then quickly stopped me. "There, that's its! I don't want you bending any further than right there because you could further shift the lower part of your back that is already shifted quicker than expected." I wasn't even but a bit bent over but for my fragile back that was more than enough. I have not only been overdoing it with the constant upkeep of the house taking care of it on my own but I was quickly progressing a very bad situation.
At this point I wasn't upset or angry. I told my doctor, "I have been through worse and if life will soon be in a wheelchair then I will have to adapt. I will LEARN TO ADAPT." He began to smile then we went over the next steps one by one at the same time learning to put my ego and what others may say or think of me aside. "You must not care what others think. You need to start using your cane on a daily basis. You need to start using your wheelchair more often. You need to start wearing a back brace and get fitted for a spine brace to limit your movement."
This is coming from a gal who needs to keep moving because gravity and Drano is the only thing from keeping me in trouble. My doctor understood the importance of keeping active but with my double jeopardy I have no choice but to listen and put things into action. There is no room for being stubborn or wearing my Superwoman cape. There is absolutely no more room for stress. There is plenty of room for needing help starting next month and I am very fortunate to have my friend.
As we finished up things and he wrote out my referral to get the braces and see my new specialist to add to my current team he smiled at me and said, "You are far too young to go through so much at such a young age. You don't deserve this nor to be in constant pain but I commend your inner strength. I commend you for instead of using high dosages of strong narcotics you instead take the pain. Head on. Good for you and it shows me how much of a fighter you are! Just please like I said don't be concerned of what others think by using the cane and wheelchair. You have some very serious issues going on with your body and please take them seriously."
I guess another light bulb went off in my head because once I left the office I went next door to set up the appointment with my new specialist to be fitted for my braces. This same doctor who just arrived here in the states from Italy will also be managing the progression of my spine. Later this evening my friend who was determined than ever began to get busy shampooing carpet for me, painting a closet project that still was yet to finished while at the same time helping me to adjust to this new set of changes and mandatory rules. Sure it will be tough as he told me, "This is going to drive you nuts because you are so independent not by nature but because for so long you lacked the vital help and support you needed. You need to think now before each move you make. You don't want to be bound in a wheelchair sooner than expected." I was a bit taken back by his bluntness but respected what he was saying. This might be the last 'United GP Walk' walking but I must continue accepting the plate in front of me no matter how bad things get.
You can always expect changes in a Gastroparesis life. Changes will never stop happening but at the end of the day you must always remain strong and continue the great fight! KEEP ON! KEEPING ON!
Posted by GastroparesisAwarenessCampaignOrg.
at 11:59 PM EDT
Updated: October 21, 2011 1:48 AM EDT