I have some really beautiful pictures that I am going to come back tomorrow and add to this post as I am using my new mini computer that I received for signing up with Comcast and all of my photographs are stored on Elphalba the large laptop. Beautiful roses from a real rose garden.
Anyway, I realized tonight that I only write about the more positive aspects of dealing with an illness such as mine on this journal and someone brought to my attention that this does a complete disservice. I am not telling the full story, I am hiding the truth, and I am basically telling lies of omission. Should anyone in a similar situation ever find this journal I want them to be able to read it and know that the hard times are just as normal as the good times, that there are incredible struggles, that there are times where you wrestle with God but that in the end it is still worth it.
Right now I am dealing with a lot of anger - anger at God for allowing this to happen and not intervening with a miracle, anger at my body that continues to betray me, anger at a world that is so inaccessible, anger at the fact that my life was turned upside down like a snowglobe and vigorously shaken and the pieces have yet to fall down around me in any order. I know that this is perfectly normal and a part of the grieving process for the loss of who I used to be. I am also weary. so very weary. Weary of constantly having to be vigilant for complications, for simple things as having to remember to eat and drink, of having to check continuously that the medical care I am receiving is appropriate and no mistakes are being made, of having to be an advocate for myself and face the wrath of doctors and nurses who prefer placid, docile, and unquestioning patients. I am weary of the hunt for a diagnosis and over a year of not knowing, of over a year of feeling powerless to something that has held me hostage in my own body. I am tired of living knowing that at any moment another autonomic crisis can strike without warning and that we have no plan for treating these other than careful fluid administration and time.
A year ago I was certain we would find a diagnosis, treat it, and I would consider on with my life like I always had in the past when a new medical issue arouse. I never anticipated being where I am now, and the permanency of the situation is beginning to really hit me. This very well may be as good as it ever gets and that frustrates me. I am also tired of being sanctified like some holy saint for dealing with this illness "so well" and being so "brave and strong" and doing what others are certain they "could never do". I might be mistaken, but I am pretty sure I never signed up for this. I am living the life that I was given to the best of my ability and I see nothing courageous about that and you would be astonished by what you are capable of doing when it is the only option.
I know that this is not how I normally write and I am taking a huge risk writing with an open heart about the more difficult aspects of living with this disease, these many illnesses, this body that is damaged and malfunctioning. Before anyone worries, I am not depressed and there are countless times in any given day when I am joyful and overrunning with gratitude for all that I have. But the journey is not easy and I would do it a disservice to continue to hide the hard parts and provide a sugar coated reality. No one promised a rose garden, but more than that I think even in the beauty of a rose garden there are sharp thorns that slice at you.
Tomorrow is another day, a day yet untarnished and untouched and for that I am always thankful. Each day is a new start, a new beginning, and a new gift. And I never once have questioned how richly blessed I am, especially with love.