Thursday, November 21, 2013

Treatment Update

I continue to feel grateful for many, many things. Every now and then I feel graced by feelings of deep joy born out of tolerating deep suffering. I feel a deepening of my sense of spirituality. It has been a long journey and fear still lives with me but I'm working on making that less of a motivator. 

I'm starting to put on weight thankfully so the na EDTA and the Mimosa Pudica are working. I'm also having an increase in functioning which means I get to continue to work on emotional healing as well as developing friendships. 

I'm redefining who I am out of the ashes of my old life. I'm grateful for my therapist. Though an intern she's a natural and is tough in that she's been able to handle the feelings that have been emerging in me.

I never thought I would be able to write a post like this the first 4 years I was ill. I thought I would be forever non-functional 22 hours a day. Many, many times suicide seemed like the best option I could offer myself and those around me.

I have enough energy to grieve strange as that may sound. But to those that have been severely and even moderately affected this makes sense. It takes energy to feel emotion whether it be joy, happiness, grief, anger. It takes energy to change and even to have hope.For awhile I simply had to be numb and resign myself to merely existing and surviving each day.

I don't know if this is my new normal nor do I know how long this will last but I'm hoping that with all the treatments I'm doing (if I can afford them) that I'll continue to be able to retain my current level of functioning. I'd love to have more improvements but if I don't I'm grateful for the gains I've made both emotionally and physically. 

I miss my ex but that's okay. I'll probably always love her because of what we went through together. I'm sure for her it was traumatic (as it was for me but she had the added burden of taking care of me and shouldering the financial responsibility during the time I had no income) I hope she is living her dreams and I continue to feel grateful that she had the courage to leave the relationship. I was emotionally burdened with the guilt of knowing this illness was robbing her of her dreams. And I could see what it was doing to her soul.

I'm at the limit of my Medicare Part D coverage but have a plan on how to proceed. I have enough medications to get me through the first part of December.  I have enough of the important things to get me through to the end of the year. I'm extremely grateful for the two people who donated enough Imunovir to get me through the first of the year and then some.

My three favorite treatments right now are Mimosa Pudica (it has antiviral, anti-fungal, anti-parisitic, and anti-bacterial properties), na EDTA which is helping my gut, and Imunovir. I'm not at the full dose of any of them but they have each contributed to an improvement in functioning. 

Because I'm a lot more active I'm having back issues. At times the pain has been severe enough that I've had to resort to large doses of Advil (against the medical advice of the GI doctor who diagnosed "raging gastritis-he said no more NSAIDS but if I absolutely had to make sure to take Zegerid) which has caused a resurgence of pretty severe stomach pain. The pain usually starts at around 3-4 a.m., is localized to right where my stomach is, is severe and at times leads to nausea. I spend the rest of the night trying to take the focus off the pain. 

It has happened quite a few times in the past 2 weeks. I can't sleep and I can't even concentrate on TV as a distraction. I've tried every OTC remedy I can. Some I cant' because I'm unable to swallow pills and most are time release (Zegerid, Prilosec, etc...). My last resort is to try Mastic Gum/DGL. I'd emailed my doctor's office and that's what they suggested. I need another endoscopy but that will have to wait until I pay off my medical bills. Luckily I see the neurologist for my back on the 27th. Hopefully he'll have some ideas.

Some good news-I received an invitation for a presentation of the results for one of the research studies I was in three years ago. I don't know how much I can say at this point and will reserve any comments until after the results are presented to us. The invite stated "no guests" so I'm assuming that means to keep things confidential. But I wanted to throw that out there for anyone who is waiting and hoping for news.  

They are also continuing to finish one of the other studies I was in which is also good news. This particular study is the one I've been eagerly waiting for.

I will post as soon as I receive permission.   These were large, well designed studies performed by a well respected institution. 

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