Lumbar Puncture Procedure, December 2023
After yet another Lumbar Puncture procedure for IIH, results show that the VA shunt placed during the May surgery is not functioning correctly and further procedures are required. These news have been difficult to take. Please join me in a discussion of the present situation.
The Return
After a hiatus, I have decided to share with you not only the joy of ‘getting better’ but also the bumps on the road and the fall backs. Here I am again to give anecdotes and stories that may make you laugh, think, or perhaps even shed a tear. As always, many hugs to all of you!
IIH: Cough
My coughing attacks continue and getting worse. This saga is becoming a real issue and one that was completely unexpected and leaving specialists speechless. I am truly being tested physically and mentally. An interesting phase in my life and yet another outcome of a VA shunt that was completely surprising to me.
Pain
After my IIH VA Shunt surgery headaches and dizziness have returned. With a nicked nerve in the throat seriously damaging my vocal cords and impeding me from swallowing properly, I am quite frustrated. Yet, my old headaches returned, waking up in such pain again has really done me in. This chronic pain of pseudotumor cerebri coming back, on top of everything else is not something I ever expected.
22 Headache Update:
After my second Covid Pfizer vaccine I knew that I was experiencing lots more headaches than usual. Here is my experience. This is the beginning of what I was hoping would be an open discussion.
Welcome to my path to another surgery!
After a long time of resisting surgery, my body is giving strong indications (future video) that I need to go through yet another operation. I ask for all your support, positive vibes, and prayers (if you are so inclined) to wish me the best in this endeavor.
My plan is, with my hubby’s tech help, to give you as many updates as I possibly can. Please be aware that for the hospital’s privacy I will not discuss any names. Also, I will include a black screen at the beginning of any video that might contain possible sensitive material (bandages, etc.) I will not be videotaped with anything that is past a certain level of décor. This would simply be unfair to both of us, my privacy and your taste.
Again, thank you very much for all your support. I so appreciate your kindness, the love you send me, and all the support through all this years. Many kisses always!
What would it be like to feel your body through physical pain?
This morning, and for as far back as I can remember, I embraced and fully felt the experience of having a body. This seem like a ‘normal’ feeling to most people, but it is not to someone who feels pain every day of their lives.
Knowing, being aware of pain, chronic pain specifically, one knows at some level, that experiencing all the physical parts of oneself means coming face-to-face with suffering. And pain is to be avoided at all costs. When one becomes disabling ill, everything crumbles, and both the interior and exterior world is perceived as needing to be avoided. One wants to scream: ‘get out of this’ reality that is the illness or condition that one finds themselves in. There are few to no ‘coping’ mechanisms within reach that truly are helpful.
Furthermore, we live in a society constructed around the idea that for an ailment the only solution is to diagnose, solve, and medicate (or cut). When none of this works, as an internal solution, and by this I mean as a solution for the chronic daily pain that a person feels, then what? Much of the medical community copes themselves by numbing the ‘patient’ who does not know any path out of the agony.
Today, during one of my seemingly regular meditation sessions, something different occurred. I am unsure I can quite put my finger on it. Perhaps I simply let go; I allowed myself go into a space of feeling that which causes me ‘hurt’, or the daily pain that I so desperately avoid. And yet, unbeknownst to me, I made the choice of deeply feeling that which I have been running away from, the pain that I was so desperately escape.
Today I felt my body, in its full integral being. Yes, there was pain, but it was not the focus of my attention. Perhaps for the first time in a very long time, the focus was the sheer joy of the feeling itself, of the depths that it is to be alive in that very moment, of the unity of all my physical parts that made up the whole. And, also for the first time, it felt good; I smiled; I felt joyous; perhaps for a fleeting moment, but so worth it.
Thank you!