Long time no talk-update

 I haven’t written in 9 months... why?   I do not know.  Combination of many things:    Depression, and just the fact that there is no end to this.   It’s seems so negative to write all the time.   Although I know writing is therapeutic.  I see no cure in the future of Arachnoiditis, and once you have had Cauda Equina Syndrome, they can not go back and fix it.    There are stages of Arachnoiditis, mine has of course has Progressed to the worst which is Adhesive Arachnoiditis.   All of the nerve roots are clumped together in the thecal sac.  Unsure if it is impeding the cerebral spinal fluid flow yet, but could be.   Let’s not forget the Pudendal Nerve Injury.  That also can’t be “cured”.  I will be continuing with Botox  into the pelvic floor muscles as soon as Dr Hibner gets established at his new practice.  He will also order more pelvic floor therapy which I have done for 6 years.  Without it, I seem to go backward.  I do use suppositories compounded with Baclofen/Valium/Ketamine for relief with the spasms in the pelvic floor.  I have had a prescription since March, just now running low.  Quantity of 60 has lasted this long as I use as needed as not twice daily as prescribed. Why?    60 costs $120, as insurance does not cover.  So I have some treatments above for relief of the pudendal neuralgia.   

Now, the depression and PTSD,

  I see a counselor 1-2x monthly.  If I see her in the office she does do EMDR.   If it’s virtual she is very good with utilizing therapeutic techniques, such as tapping, and other cognitive behavioral therapies, not just “talk therapy”.   I also have a weekly group online. I see a psychiatrist who does ketamine infusions for the PTSD and severe depression.  I have some vicarious trauma from my profession, but also from the medical trauma.   Yes, I am on medication.  Just your typical anti-depressant.  In the beginning of my illness I experienced extreme fatigue.  I was diagnosed with Chronic Fatigue Syndrome.  Because I was overweight my primary physician tried a diet pill for energy/weight loss.   That did not work,  he referred me to a Neuro sleep Dr.  He explained how my body still unconsciously senses pain even with pain medication and it wears me out.  He put me on a type of narcolepsy medication.  Well..   my brain worked at 1,000 miles a minute and my body could not keep up without hurting myself.  So we knew that was not the one.   I got a letter he retired and left the practice.   Ugh.  My luck.   I decided to go see a trauma psychiatrist that I knew a little about.   Instantly, he knew a treatment plan: the Ketamine infusions monthly, low dose Ritalin (stimulant, not amphetamine).  As well as widely used anti-depressant.    Prior to seeing him, note.. I was sleeping 18 hours a day, and unable to drive due to the severe fatigue.    Well, follow up visit, low dose Ritalin, did not work (Still sleeping), moved me up a dose.   Next follow up, still sleeping.  Moved me to highest dose.  I was having a quality of life during the day, not napping, playing piano, doing crafts etc.   I have been seeing him over 2 years now.  Still the same treatment plan.  Ketamine Infusions every so often.  Guess who pays that bill (not the surgeon). Me.  It’s not cheap and insurance does not cover it yet 🙏

I will stay on this updating, I can not let this slip through the cracks of depression.  Even if it’s weekly, it needs to be done.   This is my promise to you, please hold me to it !    

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