And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Thursday, October 17, 2013

Halfway through October!!!

Well, we're halfway through October and it's not going the way we would have planned!  Oh, you mean that we don't get to plan our lives?  Oh!  See, I like to have everything nicely planned!!! ; )

Anyway, I've already had 58 seizures this month which means that in half the time, we've beat the count for the entire month of February, April, May, June, or August.  The last time that I averaged this many seizures in one month was in 2011 after the IVIg treatments.  So, it sure feels like we're headed in the wrong direction.

The docs have a rule as to when I am supposed to take my rescue meds because they know that I don't like to take those strong meds unless I absolutely have to...well, at the rate we are going, this month has me taking more rescue meds than any other month in history.  The dose is also much higher than it's ever been to try to get it to work.  As well, I'm still having more seizures (thus, the rescue med doesn't seem to be stopping the seizures)!

Come on, Lord!  How do we get this to stop?

Please pray that B will be able to accomplish all the work that he needs to get done while still helping to care for me.  The seizures are getting much worse and are requiring more of a hands on approach from someone else; whereas, the last seven and a half years, I've been "okay" by myself.

I had two bad ones Tuesday and then a third that I was "stuck" in...that basically means that it's like it wouldn't end.  B came home and my body was remaining tensed up and he couldn't get it loosened.  One of our dear friends, David's daddy (remember sweet David that you each prayed for...)  came over and was able to start a line to give me an IV version of the rescue medicine. That tends to work much faster and tends to last much longer.  It did work quickly and I was able to stand up soon after he left.  However, I already had another seizure by Wednesday at noon.  We used to be able to get a few days out of the IV meds.  That doesn't seem to be the case anymore.

So, please join us in prayer as things are getting much worse.  UT Southwestern is very difficult to communicate with and get any type of answer.  We specifically asked the doc last week how to best reach him.  We have done exactly what he asked and still haven't heard back from him, even with e-mail promises from his nurse as to exact times that he would call and then apologies from his NP that he was too busy to call.

We had a great conversation with a Pediatric Neuro that actually studies GAD-65 and has a lot of experience with all that we are going through, but in kiddos.  He's not able to treat adults, though.  We sure wish he could take over my care.  He had an amazing knowledge of all we are going through that most of the docs haven't come near understanding.

According to each of the docs, chemo seems to be the only "next choice."  Obviously, we don't want to do chemo unnecessarily.  So, please shower our appointment today with prayers and pray the docs will be overwhelmed with the wisdom of the Lord!

1 comment:

  1. So sorry that you are having such a terrible month with an increase in the number and intensity of the seizures! I sure don't understand it! I am also sorry for the lack of good, quality communication that you've had with the doctors. What a frustrating experience and one I just cannot make sense of - how can you give someone good care when you don't communicate with them and don't understand the full history of the patient. I wish the pediactric doctor could take over your case like you said. I know you have tried so many things, but I hate to see you have to do chemo. I am a reader of - a mom who promotes excellent nutrition (much better than the average definition of "good eating."). She has now gotten into alternative medicine that is based in plant-based medicine and other holistic treatments that are outside of the standard western, drug-driven health care. Specifically she has focused on cancer and she's traveled the world to find the best places that treat cancer with the best approaches. Her #1 choice after lots of travel and research is a clinic in the Swiss Alps - Paracelsus al Ronc. The good news is that they don't just treat cancer! And the experience itself, aside from the strict medical treatment, is supposed to be amazing. Perhaps you could consider going there for treatment as an alternative to chemo? You can email the doctor who runs it and tell her your situation and see if she can help. GSG is going around Thanksgiving with a group of people - you and B could go then or you could go anytime on your own. I just hate to see you suffering so much, so I wanted to let you know about it. Here aer some links about it:

    Praying that God hears the prayers of so many on your behalf and gives you healing!