one minute at a time

The thought of updating this blog has just been too daunting. Let's just say my life has not been a walk in the park lately. Just when I start to feel like I am in good hands (doctor wise) something comes crashing down. It is usually one thing but right now man Satan is throwing some hard punches. When you have a rare illness that doctors don't know much about  you end up lost and unsure where to turn or what to do with yourself besides laying in a fetal position shaking. I just don't even know which way is up right now.

Here is a brief overview of what has been going on lately. Back it up to me finally founding a doctor willing to do infusions but only in his office because of my infection risk. Going there every Monday Wednesday and Friday is hard on me but I know it needs to be done like that. I finally have 2 infusion nurses that keep a very close eye on me and honestly that gives me peace. About a month into this my physician left the practice and tossed me off to another doctor in the practice. I was fine with that at the time and my treatment plan was not going to change. My infusion nurses have been such blessings, they have caught things that nobody else caught because I was under the right care. It turns out my iron was dangerously low and I had to have 2 iron infusions, without this office I highly doubt that would have been discovered. I actually have yet to actually see the new doctor because he has been booked up and canceled on me once but these nurses know what they are doing.

Apparently I am there most delicate and fragile patient so everything has to be done perfectly because I cannot afford an infection or any other issues. Well, I have been have some anemia problems but they are on top of it all so I have been able to avoid blood transfusions and it takes such a load off of me just having an advocate. Despite my slight irritation that I can't see the newer doctor until April 5th I felt safe and thoroughly taken care of for the first time in so long. So, we were going forward, week and after week of me in the hands of those I trust. 

Then the ball dropped again. Due to staffing issues the infusion center has had to close for an unknown amount of time. They set me up with home health and it is one big mess. Not competent hands and when I spoke to the infusion nurses they said this is my only choice right now. I am also not being followed as closely this way and I am feeling lost and helpless again. I am just praying they open up soon. Right now I live hard minute by hard minute. Hard but God's graceful minutes.

There is the brief (I know right?) overview. Anyway, just pray for me, I feel a little beat down and tired from always having to advocate for myself.