I know I haven't posted anything for a while, but that doesn't mean that there isn't anything going on. It just means that I'm lazy about getting it written.
    First off I have to give a HUGE shout out to the Lord for moving things so quickly for my friends Traci and Bill Vega. They will be traveling the end of this week to bring home their forever little girl. Zayla's adoption will be finalized very soon. I can't be more happy for them. My heart melts for families who are able to open their hearts and homes to the orphaned. I always wanted to adopt but with my health over the last 20 years or so, it just wasn't anything that I was ever able to take action on.
    I am battling insomina still and it is driving me nuts. I have to say that a couple of hours a sleep a day is NOT enough to function fully. Thus, my body is not functioning or fighting as hard.  I feel like I have been in the hospital more than at home recently. and this is where we are with all that.  My trip to China is still pending, but looking less likely to be able to go. With this diease hitting and affecting the heart I am not able to fly. We are still trying to find the right combination of medications that will help stablize things so that I will be able to get through the days without any 'attacks'. We do have it controlled to about 2 attacks a day but that takes about 8-10 hours of the day to recover. NOT A GOOD THING!!!  If you have ever had a charlie horse (muscle spasm) than you will understand when I say that it is painful. That is what is happening to my heart. MAJOR muscle spasms. They last for 30-45 minutes but it takes all the energy and strength that I have for several hours to recover. The medications are strong enough that it just makes me want to sleep, but I can't sleep nor function. It just feels like I am taking up space and breathing good air. Too weak to get off the couch or bed (wherever I am at at the time). I have had a group of wonderful ladies here at the towers step in and help me out more. bringing meals, and doing laundry and such.
    My niece Kimberly got married this past weekend. Dave took me down, which was an almost 2 hour drive each way. The wedding was beautiful and it was great to see family. And I would do it all again! The down side to it is that I was totally exhausted for a couple of days, even more so than normal. i have a hard time traveling any distance right now. I sure hope that all changes soon.
    Tomorrow I will be spending the day at KUMed for more testing and to get my tubes changed out. This is the first change out since the surgery. I have a list of questions for the doctor this time regarding the tubes. Why all the infection this time. I just can't seem to get rid of it for more than a couple of days at a time. Chronic UTI's is for the birds. We use extreme caution with cleaning, draining and caring for the current tubes, but this time around it just seems to harder to fight the infection. antibotics are good but I can only take so many without affecting other things. The bowels are not working properly, and haven't since dealing with the CDIF. The doctor has mention a colostomy several times. Not that I'm looking forward to that at all. Just another bag to deal with. But if that is what it takes, please Lord, help me through this process.
   The MRI tomorrow will be to see the progress of this diease. We do this every 6 months to keep track of things. I never look forward to the results as it never seems to be good news, at this point I would take "no change" as the best news. Even with that, it could mean that the deteration isn't getting worse, but it doesn't mean that the internal issues are not changing. At this point, the lungs, heart, bowels, bladder and kidney's are affected, along with all the muscles. Trying to keep up with the 31 different medications I have to take several times a day is a charting process of its own. Sometimes I wonder if the medication is causing issues in itself. Is it possible that over medicating is an issue. Taking one thing to help with the side effects of another. When will all of this stop? Right now my prayer is for a day to really rest, be pain free "without pain pills" a day with lots of energy and strength. I have accepted that I may never walk again, and I'm ok with it (although I will never give up hope), but I would like to be able to reach out and hug with both arms.
   I will NEVER give up hope! I WILL continue to strive to search for that cure, that treatment.