I am struggling, and I am struggling to share because this is my weight to bare, this is my cross to walk with, and I don’t want to put that on anyone else. So this may not be one to read, maybe I wont hit publish, this is one that you can skip because its not wrapped up in a pretty bow of I am ok, because today in this moment I am not ok……….
I wish I knew how I got here, because I don’t want to be here, I don’t like it here, but in this moment I can’t see a way out, I feel like I am drowning, and just ready to lay down. Its been over a week since I had the test, and still nothing from the trial, nothing from Whitney on the medicine and the insurance, I left a message yesterday and nothing as of yet. I am tired, I am tired of fighting, I am tired of being a strain on the family, (brad would deny this a million times over) but that doesnt take away the way it makes me feel. So much is going out, so much time to take me places, and being in a room with people and still feel so very much alone. I know God is here, but these past 2 days I feel like there is this huge barrier between us, and I don’t know how it happened. I see my dad’s journey flash before my eyes more and more, his started right where I am, the legs and hands, the stumbling, weakness, the swelling and then just went downhill very fast. I was working on my 3 year prayer journal and wondered would I be here in 3 years to finish it?
I got a journal for the boys one we pass back and forth and I have such strong feelings of leaving important notes so they know when I am gone. Death has become so much realer to me if that makes sense, I know we are all dying but when you get diagnosed with a progressive fatal disease it just puts death on your doorstep, for me at least it does and more so lately. I know a miracle can happen its happened before, but this time just feels different. I am can see a decline in the past 6 months, and it scares me. It scares me not to be here for my boys, for Brad. I am not afraid of death I am going somewhere much better then here, I just feel like there is so much for me to do here yet. There I go trying to take the place of God, like I know better, and maybe thats my problem, maybe thats how I got here. All I want is medicine to slow this gene down, and yet its such a fight. I am so tired, my legs are swollen, red, and hurt. My hands up to my elbow have that numb and tingling feeling and its just annoying and painful. Right here in this moment, I do not want Amyloidosis, in this moment, I am in a dark place that I can’t see to get out of. In this moment the weight is too much to handle. In this moment I am not ok…..