the whole story of what you are praying for

I know I have a lot of people praying for me and I was convicted to share what I need prayers for. So this is my story.

As you may or may not known, I was put on pallitative care because I have exhausted all treatment options. Well, that went really well at first, they got my pain under control and were really supportive but then it fell apart. I got an email from them saying that they have to prove that I am in pain in order to do my pain meds and since my pain is like “invisible illness” they cannot prove it and told me they will no longer fill anything and I have to go to my primary care for meds not them.

Here is the thing…my primary care sent me to them for pain management because that is what they do. Comfort measures. Primary care does not do that. My medications were stopped immediately and you are supposed to wean off of them and as my primary did say “they cannot just stop them all of a sudden” I called pallitative care stating that they cannot just stop it without giving me time to find a new doctor. I was told I was wrong. I called again and asked for management to call me. That took 2 days. She called and said I am still in their care and looking at my records she couldn’t see where anything I just wrote occurred and said she would do investigating and speak with the doctor and call me the following day.

Surprise surprise nobody called. While I was dealing with that I also got stuck in the middle of my primary and neurologist disputing what to do because they both claim it is the other individuals job to figure out how to help. Nobody wants to do anything. I did an evaluation with a different pallitative care but no doctor will cooperate. I have communicated with 3 other companies and I am getting turned down everywhere. My doctors are giving up because they don’t know how to treat my severe case and I can’t find new ones that are willing to try.

My last effort is trying a pain managemnt doctor vs pallitative. I have seen and/or spoken with 5 of them and they will not take me as a patient. Right now I am waiting to hear back from washington university and it’s the last lead I have.I am not in a good situation here. Ever since it was stopped I have already landed in the hospital for 3 days, I don’t know how my body is going to keep reacting.

Also the HUGE concern is that if the original pallitative care company drops me as a patient I loose my IV fluids. It was hard enough to get them to sign of on fluids in the first place and my other doctors refuse. That could get bad really fast. They also are saying I have to have an electrophysiologist to manage all this. 6 of them later…”they can’t help me”. Yeah I would be glad to have them manage it if you can find one to take me. What am I supposed to do?!

All of this leaves me without a willing physician to turn to since nobody wants to touch my case anymore, the potential for loosing fluids and making my blood pressure plummet is scary, and I could end up in and out of hospitals again for pain management. I would appreciate prayers for this last lead with Washington University.