Sunday, September 25, 2011

Weekly Update

I've decided to try to update weekly on Sundays about  my condition and prayer requests/praises for those of you who are keeping up with my journey with pain.


I have been slected to become a member of the BlogHer publishing network. BlogHer is the largest network for women bloggers. Their advertising will allow me to make a little money doing something I really enjoying...writing! So my blog will look a little different in the days to come.

Prayer Requests:

  • I spoke with the pudendal neuralgia specialist this week on the phone and he made no mention of me having to travel to Phoenix for 3 CT-guided blocks (Praise God!). Since all conservative measures have failed to treat my pain he is offering surgery. Unfortunately there is no way to know for sure that the nerve is really entrapped or where.  I was scheduled for surgery much earlier than we expected...January 2012 (I thought it was going to be July!).  At this point we don't know yet if this is the right thing to do. We need lots of pray for wisdom in making this decision. It will be a long hard recovery. 2 months of not bending and up to 18 month total recovery. And there is only a 60% chance of getting better, but that better could be as little as 10%. I will only be operated on one side, but I do have symptoms on both sides, so I worry I might have to have a surgery on the other side too in the future, which would be a big expense and a lot of  time reocvering.

  • There are a couple of other things we are praying about pursuing prior to surgery. There is a radiologist specially trained in New York to look for pudendal nerve entrapements via MRI. I had a similar test done in Phoenix but mine was normal. The doctor in NY is better qualified and sees entrapements that have correlated with some pudendal decompression surgeries. This would only be for peace of mind for me in having surgery. But it would be another big expense and we just don't know if it is worth it. I am also considering evaluation by a highly trained PT for Sacroiliac joint dysfunction. I know I have SIJD, but do not understand to what affect it has on my PN symptoms. I am doubtful at this point that PT will help my pain significantly, but I'd like to try everything I can prior to surgery if possible. Again this would be another big expense. Pray for wisdom.
See a theme here? :) We just need a lot of wisdom! It's so hard to know what God's will is for me in this situation. Sometimes I wonder if maybe I don't need to pursue any more major treatments as everything so far has only worsened my pain. But then I don't know how I will continue to live like this either. I know God's grace is sufficient, so is this the life He wants for me. Some of God's servants went through major suffering in the Bible their entrie lives. Maybe that is God's plan for my life.  Should I just keep looking for healing the rest of my life, or after trying for so long do I just relax and trust in God's sovereignty and try to use my suffering for his glory? It's a hard thing to understand for sure. I have peace understanding that I may not be fully healed in this life, but I'd really like to have just a little better quality of life at this able to care for my family with manageable pain, sit for 2 hours with manageable pain, pain controlled decently with medications, be able to do a little more social activities, wear normal pants (more on this to come in a future post), etc.

For now I am 5.5 weeks post-botox injections and am still in more pain than I was before. I am continuing PT but I don't think I will continue much longer because while I like my therapist she doesn't seem to know enough about my complex condition and I seem to be in more pain after our sessions. I continue to need more medication than just my Neurontin to make it through the day/night. I've taken Valium/Baclofen suppositories, Ativan, and more narcotics, I hate the way they make me feel. So as you can see I need some better pain management. I will discuss this with my "local" (they are 2 hours away) doctors when I travel to see them in a couple weeks.

Thanks for your continued prayers. I'd love to hear others' experiences who have been in similar situations!

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