Tuesday, April 3, 2018

It really got to me today.

So this is the kind of day I've had... ending in a nasty migraine, for which I had to take Excedrin + Tylenol (for the third time this week). The magic retreat is over, and I need more. My medical problems are very extensive, and I'm trying to heal, but today-- perhaps because of the difficult withdrawals I am doing from all my medicines (no, not all at once, but this one presently is a bear to wean off of) -- today was awful. The weaning, the arrival of my monthly female visitor, the constant pain, seeing everyone's beautiful vacation pictures on Facebook during Passover vacation now, it's all too much.

This is what I wrote to my NF list today:
I really need support today, guys, I'm miserable. I'm so, so angry at NF for taking so much of my meaningful life from me, almost 11 years ago. I am suffering with constant pain and can't endure this much longer. I don't know if my new doctor can help me.*  
Sometimes I just wanna die. There are too many medical problems to deal with, I can't take it any more. It's Passover vacation and I can't go out and enjoy, I'm in too much friggin pain. My daughter is begging me to go to the beach, and I don't have the strength. I LOVE the beach, and I can't go. I'm miserable and sometimes feel like ending it all.
* (the asterisk at the end of the first paragraph)- You ever heard that joke about the guy who hires a private detective to spy on his wife because he feels she is cheating on him? So, one day he leaves for work as usual, and the private detective is parked near his house ready to take film if there is any action. Suddenly he sees a man drive up and come to the house. The detective turns on his camera and starts snapping pictures. The wife opens the door, they hug (snap picture), and she leaves with him (snap picture).
The private detective follows the car the wife and the unknown man are traveling in. He sees them stop at a hotel, and go in. Lots of pictures snapped. He then sees a light go on in a room a few floors up, and the private detective puts on his telephoto lens. He snaps more pictures. He has pictures of them embracing and undressing. Then the window blinds get closed, and he can no longer get pictures. He reports to the husband all he saw, and shows him the pictures.
The husband says, "see? I need more proof than that!"...................

That is a little bit of where I'm at with that statement of not being sure the doctor I'm seeing (Dr. F) can help me. I hope against all hope that he can, and *he* fully believes without a shadow of a doubt that he can help me, but I need more proof. I'm still in lots of pain. Dr. F says that he believes that for every year one is ill, it'll take about a month of these types of Chinese medicines and treatments to heal you. That means we can't really judge until 11 months of treatments has passed. I've done two months. I've been really unwell for a really long time.
It's easier to fall into a pit than it is to climb out.

I got some really supportive, caring responses from the list-- other NF survivors and/or caretakers of survivors. One was this:
"You have been an inspiration to so many of us throughout our battles and it's ok to have bad days but I'm sure if you read back on some of your past comments and advice you will find your strength again to get through again and again. You are one of the reasons so many of us have come together as family in our own healing ways. I know it's bad right now but deep inside, you know that again you will beat this terrible demon that shows it's ugly self because YOU and ALL of us are some of the strongest WARRIORS and can NOT give up now. There's still too much more to learn and to teach those who are new WARRIORS and caregivers that feel lost. Sarah, thank you for being you!!"
Another like this:
"...I understand that. I can’t believe you have dealt with it for 11 years. You must have a constitution of iron. So hang in there my dear! Sending love and support your way! I hope you feel better soon. ❤️"
To which I responded:
"I actually feel that my constitution is pretty weak at this point in life, but it's been fueled by having 4 kids to take care of. They were babies when I got NF (aged 1.5 to 7). They're big now, my youngest is 12.5, and I have a 15 yo, 18, and 19. But they still need me emotionally, and to a certain extent still physically. *They* are my constitution. I probably would have purposely OD'd myself out of this world long ago if not for them. It's just that I am now in the process of going off my meds, and it can make for some very bad days. My doctor is trying to "detox" my body with these withdrawals. I hope he's right. I'm desperate enough to try anything. But this doctor is very special. I pray he can do what he says he can do, get me out of pain forever."
The person then responded:
"Sarah Kashin Klein you certainly have 4 great reasons to keep on trucking. I hope this doctor can work some magic and make it happen. YOU are a walking miracle. You didn’t make it through NF to give up. You made it through to show it you mean business. I know some days are so rough. You question everything and feel like you are just existing. But you have shown those 4 kids what it is to overcome. Some days it’s hard to get up in the morning. But I’m sure when you look into their beautiful eyes you know exactly why you did. I know sometimes when I’m having a horrible day one of my kids will say something that makes me stop and pause. THAT is why we are here. 😊❤️ "
Anyway, my point is that the NF list is a very special place to be when life is feeling really hard. There are people there who obviously I have never met, but I love them for who they are. We are a family on that list, we understand what we've been through. I'm telling you, *nobody* who hasn't gone through what we've gone through can understand what kind of devastation NF leaves in it's wake. Many have extremely similar stories to mine... undiagnosed (or misdiagnosed, or not taken seriously) for too long, kidney/liver/lung shut down, multiple surgeries, coma, skin grafts, PTSD. So many people who "have been there" where I've been. I'm so grateful for the internet which has brought us all together to support and strengthen each other. That is how I made it through today.

I was so *angry* today... I was cursing everything I was trying to do (mainly lots of food prep while standing up- I sliced my fingers quite a bit in my impatient, pained haste), I even called the dog stupid animal because she was outside barking and that is not allowed here, she immediately looses outside when she starts barking, so I called her in. She's always only loving and sweet and compassionate to me... but this anger I have-- when it rears it's ugly head, it's NASTY to anyone or anything in my tracks. And she (Emma- our dog) was barking-- a noise thing which especially gets on my nerves. She scooted her butt downstairs to be with Robert to get away from me & my tone of voice. Poor sensitive mutt.

Know where most of my anger was directed? To the surgeon who messed up [my original hernia surgery back in 2007]. I wanted to send him a hate email. HATE. Now, most of you know, I am completely not a hateful person at all. But him? I have a special place in my soul that HATES him for what he so carelessly did to my life. It's not good for my soul, I know. I'm working on it. I actually wrote that hate letter about a month ago, as an exercise with a therapist. But I didn't send it. Today, though, I wanted to. I didn't, and won't, don't worry. I'm working on forgiveness. I need it for myself, not for him.

I saw a video of a Holocaust survivor who was a subject of the infamous Dr. Mengele's twin experiments. Her twin died, she survived. She publicly forgave Dr. Mengele for what he did. It doesn't mean she condoned it, but she carries no more hate in her heart towards him. I saw another video of a woman who was jailed, on death row, for a crime she did not commit. Her husband was also jailed for the same crime, and his sentence for death was already carried out by the time the woman got enough evidence and the right lawyer to acquit her of her crime. She got let out of jail, but her husband was already electrocuted, for a crime they/he did not do. Not only that, but at her husband's electrocution, the electric chair malfunctioned, and the man died by going up in flames. It was horrific, you can only imagine. The woman, finally free, went back to the jail to give a motivational speech to the inmates. She explained her gratitude for the connection to G-d she made while in jail, and forgiveness for the system which failed her husband and herself. Can you imagine? And I can't forgive the surgeon? He certainly didn't do anything wrong intentionally. He even apologized a number of times. Not for the right things, but that's his problem. The man considers himself G-d fearing... wears a kipah (yarmulke) all the time. I trusted him. He's from Harvard. We were friends. Now I hate him. HATE. But I'm working on it. One day I hope I can write to you all that I found real forgiveness (not condoning) for him in my soul. But that day was certainly not today.



Tomorrow I have a treatment with Dr. F. It's the first one since the end of the two week retreat. I'm looking forward. I need it badly.

I want to take some space here to express my gratitude to those who were able to contribute to my fund-raiser for these medical treatments. I personally wrote emails (or spoke on the phone with) to those people who I knew, but some were from people I didn't know, and others were simply signed "anonymous". To all of you... I was, and continue to be, so grateful, and very humbled by your show of support. Thank you with all my heart. We almost reached the goal. For anyone who missed it the first time, I will re-post the website here. I encourage anyone to re-post the website to blogs or Facebook/Linked-in pages/wherever public media to spread the word. I am eternally grateful and it is a tremendous help. Even if we go over the amount of the goal of the fund-drive... I am still getting the treatments, and yes they are quite expensive. The funds go right into the Dr.'s account, where it is duly deserved. No middle-man here. Thank you all, truly, with all my heart and [quite imperfect] soul.


https://thechesedfund.com/cause/restoring-talent-buried-by-pain

With that, I will say goodnight. I am grateful for all of you- each and every one of the readers here- for being with me in this sometimes tremendously painful (physically and emotionally) journey. I know there is joy in these pages, too. We are coming up on my 11th year anniversary of NF. Hard to believe this blog has gone on for that long. The original hernia surgery was two weeks after Passover in 2007.
So much writing. The blog is my pressure valve like on a pressure cooker. Until I write, the pressure cannot be released. And I couldn't keep writing if it weren't for all of you. You all bear a part in saving my life. Thank you.
There will be better times.
There will be better times.
There will be better times.
(those sentences were not done by 'copy/paste'-- I wrote them out individually. I need the practice in my head of that sentence.)

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