The Good --- still not blaming my body for my illnesses. They have their own effect on my body. So I am not mad any longer at myself because I am sick. this has helped me a lot the last few months because it takes strength to say it's not my own action or body that caused this.
I would encourage everyone that reads this to take a moment from their day and say I am not at fault. My body is not made me sick. It was an illness that invaded my body and turned it upside down. I will tell you now it will help change your mind. So that you and your body can fight the disease as one united front.
Your mind plays a lot into how you handle the circumstances thrown at you. If you stay positive you can accept things and not get angry. Anger and madness make you turn your pain inward and outward. Your family and friends become effected because they want to help but don't know how. You shut down the world around you because you want this just to go away and it doesn't. By being positive you allow yourself the opportunity to grow as a person and let others in. Having an army with you makes this battle much easier than trying to be the lone martyr in the situation
The Bad-- Well I am still sick. Having been spinning for a week now and cannot stop it at all. The medicines seem not to be handling the spin and my balance is being really effected. I see my ENT on the 12th I think he may be able to do something even if it means increasing meds. Menieres isn't fun but it isn't going to keep me from enjoying life. It has taken alot and made me dependent on others for some basic needs. But I am not stopping...I have friends and family on my side and my army grows each day.
The pacer to regulate my Gastroparesis seems to be acting out. I am having pain where the pacer is. It has a tendency to want to move all over my right side. So I am taking my pain meds. I saw my doctor in January and he said f I was still having problems at the next appointment it might mean a revision of the surgery. I go the 10th can't wait. Might seem crazy for some people but if it is surgery am going through with it. I have been having a lot more nausea this month than I was when pacer first went in. So we will find out what is going on. Last summer it just turned itself on its own. Kind of worrying if that has happened again.
The Ugly -- several members of gastroparesis support groups that I am have passed away in the last month. It is really frustrating to know that people are dying because doctor's just do not understand this disease. It is not something that any of us want. I am telling you right now the nausea and pain isn't in my head. It is something I truly experience.
I feel that there should be a special program that all gastro physicians go through to teach them about digestive tract paralysis. It is a shame that so many go undiagnosed for years. When there is a simple test that can be used to determine the illness.
I also feel that the government should take some of its money and do research to find a cure. I am praying that in my lifetime they will discover a reason this happens and why it effects people so differently. I have been lucky not to have to be put on TPN or Jpeg. Lets just say if the pacer stops that is the next step. Not excited at all.
There also needs to be an awareness program set up for er docs and general practice and internal medicine specialist. These are the people that see us first. If they know about the disease they can help us find the right doctors. I am lucky that my Internal medicine doctor knows about GP and also my Menieres Disease. She helps me make it in between specialists appointments. Don't know what I would do with out her. By the way her appointment is the 26th.
So as you can see there are always a way to turn the negative into positive. There are good days that we all have and we need to cherish those days. There are also the bad days when we would rather sleep all day so we do not have to worry or be sick. Then there are the ugly days when all control is not in our place. the days when young and old loose their fight because know one has been able to stop this.
About all I can type today in the middle of a spin and need to go to bed.
For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won. Until then don't give up hope. It is okay to rest on bad days, but on the good days enjoy life to your fullest because you deserve it.
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