Saturday, September 22, 2018

post treatment update


I know people want to know how I am doing since the ketamine infusions and I have hesitated to say anything because I just haven’t had words.

During the 2 weeks of treatment God moved mountains and did so many miracles.  I had perfect blood pressures and scattered full days pain free. He made his presence well known along the way providing me rides, finances and a doctor who cares more than any other doctor I have ever seen in my  life. This doctor went as far as giving me a free treatment and uttering the words “this only puts me out like $500 and I want to see you get better” He was so patient and understanding when the panic side affects of the medication hit once I told him I needed help. I went through a couple treatments where I considered giving up because of the 2 hour long panic attacks that I did my best to hide. He was puzzled as to why I didn’t say anything but when I said it was because I didn’t want him to give up on me because That’s what happens when I have an issue with anything out of the “normal” …I have been given up on a lot.

He sat down in the room with me and promised he will not give up on me. Ever. And stayed with me for 2 hours and talked. This is when he learned that I have a weird tolerance issue to medications, even Strong anxiety medications did absolutely nothing.. We were tripling the ketamine doses left and right because I instantly would become tolerant to the dose we were using so we had to up it each time. If the dose was too low I would panic. While sitting with me he looked over and told me with the high dose I should be practically sleeping not watching Netflix and talking with him about it, he was surprised but except for that it didn’t seem to phase him. He didn’t call me a liar, a drug seeker or tell me he can’t and won’t try to keep treating me. That’s an epic miracle right there.



Suddenly, on the second to last treatment my nervous system crashed again leaving me severely dehydrated. He explained that there is a chance that I won’t be able to come off of the IV fluids because a urine sample revealed to him that it is not even possible for me to “just drink more” and have it be effective because I would have to drink a ton of salt water, regular water won’t cut it. My symptoms are slowly  returning. High heart rate and majorly low blood pressure started up but my headaches have and still are better which was the whole original point of the treatment. It wasn’t meant to fix my nervous system, God just graciously gave me a much-needed break.

 I would call the treatment a success but there is no data on what is likely to happen now that I am done. Nobody knows why it came back which I won’t lie, It was discouraging after 2 good weeks. I have a range of emotions going on right now but I am doing my best to let God lead and don’t let discouragement take over for The miracles that just happened. God works in mysterious ways that I can’t comprehend! The plan now is that the doctor will be going to a convention next week on ketamine and is presenting my case, he will then talk to my neurologist and come up with some sort of a plan and call me in a few weeks.

“All we have to do is follow Him, our feet stepping where His feet have already made a path. The hard work has been done. We don’t have to blaze a trail; we just have to put our feet exactly where our father leads us.”—Laura Story

Friday, September 7, 2018

End of treatment plan


I have been a slacker on updating people with my treatment path. Sorry about that. I am going to recap here and then explain what is happening going forward.
The basics of how ketamine works is kind of odd but the desire is to get me into a dissociative state, it is not a pain medication so I don’t feel “high” from them but when they reach that state it literally is like my thoughts and mind are separated from my physical body for 2 hours. IF the correct dose is given the feeling doesn’t bother me one bit but if it is not high enough I will completely flip out so bad that IV anxiety medications do nothing.
 This doctor is hands down the best doctor I have ever seen in my life. We paid for 6 infusions but he said he wants to see me feel better so he gave me a free treatment! Not only that but the usual patients he sees are psych patients and the protocol for them is like 1 infusion every couple of weeks or something along those lines but the pain protocol is back to back treatments so he leaves his other full time job to come to the clinic JUST for me!! We started out slow with dosing and increased it with each infusion. The doctor is quickly learning that I do not metabolize medications right AT ALL. I had the freak outs during every other infusion and he said he has never seen this before but I become instantly tolerant to the dose we are using and that it why the freak outs happen every other time. He has had to at least double and triple my dose every time or I will not reach the  desired dissociative state.
With my last treatment he was amazed that at a high dose I was holding a conversation with him and watching Netflix when I should be practically sleeping. Needless to say I am giving him a run for his money on getting over these hurdles and finding the right doses which is very tricky but he promised he won’t give up on me and I believe him.
On to results! God is amazing. My pain levels are not getting as high and it is taking less medications to get them to a tolerable level, I even had a day pain free! I forgot what that feels like. Even more incredible is that my blood pressures are improving more and more each time. I knew going into this that this is not a miracle cure all treatment and even though these results are promising I am basically a clinical trial, nobody has a clue what my body is and will do so we are winging it! Given my improvements on the pots/dysautonomia front the doctor said if we can afford another round of 6 that we should do it because we don’t want to quit now and risk loosing the chance for me to improve more.
There is no data to be had for my situation so we are just rolling with it. We don’t know how long these affects will work for me because again, no data. That makes going forward and spending so much money on it when I could go right back to my old self and loose all the progress that was made, that could happen but so could me being better for years to come, we just don’t know.
 I can not put into words how thankful I am for my Chatham family and their willingness to drive me places and wait for hours and for the prayers from my church support team you all have blessed me and I don't know how we would have pulled this off without you so, thank you.

The decision to move forward has been made to buy 6 more infusions with me chipping in on the payments with my social security money. Lastly, I have a few specific prayer requests.
1.     I am trying to qualify for medicare to pay my part B premiums based on my lack of income, because if I get approved it would give me almost $200 more a month that I could put towards the treatments, dealing with medicare will make you loose your marbles at times. (always) so pray for my dealings with them.  I WANT TO MAKE IT VERY CLEAR THAT I AM NOT SHARING THIS IN SEARCH OF FREE HAND OUTS BUT FOR PRAYER.
2.     Wisdom for the doctor to get the doses and strengths at good levels and wisdom for me and my family as we make decisions. My first treatment is tomorrow.
3.     That the Lord will provide transportation (the schedule will be at the end of my apparent novel)
4.     That I will tolerate the DRAMATIC increase in the doses and for no more 2-hour panic sessions.
5.     That I have a thankful heart for His obvious hand in this providing me peace and endurance even through the panic attack days that make me want to give up.
  • PARTIAL SCHEDULE--I do not have  times yet, but I have the dates
  • Monday 9-10-18
  • Wednesday 9-12-18
  • Saturday 9-15-18
  • Monday 9-17-18
  • Wednesday 9-19-18