"busy people topic" turned testimony? yup.

***I didn't intend to share my testimony, I was on a whole other topic but words flowed and here we are.*****

Back in high school I was just going through the motions of the typical kid that hated school and had a social life going on. It was normal until one day I was hit with crippling abdominal pain. I saw so many doctors and the ER trips seemed endless just like the pain. I was finally diagnosed with iliohypogastric neuralgia and spent two years in pain, having surgeries and procedures and had several nearly fatal infections. I had to drop out of school and suddenly nothing became normal. I got defeated and spent some time in a psych ward and I gave up on the God I grew up hearing about. It was incredibly hard. Then one day I end up in a coma from multiple organ failure. When I woke up my body had kind of re-booted and my earlier health issues improved, I had to deal with memory loss for months but when that went away I could start life over. I also found God again because this coma at the time seemed like it was the worst thing that could ever happen but the opposite thing happened, it gave me a second chance. Only God can pull off something like that. My faith began to heal just like the rest of me.

I went to college, got a job, got a reliable car and was living in a rental house. I thought my past was behind me and I would never have to go there again. Things were going well but I fell into the rut of replacing God with the things I mentioned above. I let the business of life take over my relationship with God. I lived that for 3 years loosing site of the miracle He did. I got a severe cold that would not go away. Doctors couldn't figure it out but it put me out of work for 2 months but I got to the point where if I didn't go back I would be fired so I dragged myself into work but 3 days in I had a bad seizure that has changed my life forever. I lost my job, I had to have my parents pay my bills it seemed like my life was unraveling. I then began passing out up to 20 times per day and my doctors were clueless. I had to go back the things I left behind and it broke me.. I had to make the choice of going forward with or without Him.

I didn't know what laid ahead for me but I did know that I couldn't do this without Him this time. It took about 2 months for me to find my diagnosis but when I got it I learned that it doesn't have a cure and it's all about symptom control. I was taking 10 different medications a day and had a surgery to have a port placed so I could begin daily hydration infusions just in an attempt to keep my blood pressure up. My central nervous system is in failure and basically all the  things your body does that you do not have control over doesn't happen. Blood pressure, heart rate, breathing all of those things you don't have to think about because your body just does it. Mine doesn't. It effects everything.

I have had so many complications to add to it.. my legs became riddled with blood clots. A clot broke loose and went into my lung causing a potentially fatal pulmonary embolism, I have had several more seizures, I am left with a feeding tube after loosing nearly 100 pounds from nausea and vomiting, when I go places I am often wheelchair bound so I don't injure myself passing out and I'm often bed bound. Coping with this has been so hard because without another miracle my case is so severe they say I could be like this forever. The normal things like marriage and kids feels like crushed dreams.The one and only thing that gets me through every minute of everyday is Jesus. Without His promises I have no hope. He could do another miracle but He may not the only thing I am certain about is that He is here with me through every step...holding me when I need held, protecting me when I need protected and loving me with a love I can't fathom. I feel alone and sad at times but through this second rodeo of fighting for my life I have learned that God doesn't give up even when I do, He lifts me up when I am down and I can't imagine trying to do this AGAIN by myself.

I wanna cling to You Jesus
hanging on your every breath

I need to hear You now
I need to know it's You
I'm standing on your promises
I know your Words are true
You're bigger than what I see
That it's You in exchange for me
'Cause even the impossible is your reality
Jesus I believe- big daddy weave

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.