New supplement to try

Have any of you ever taken Lauricidin? My doctor recently suggested I start on it as a long term thing to attempt to help battle the Epstein-Barr virus. I just ordered some on Amazon and started today. I was told to start slow and work my way up to a full dose, and from what I read, it is to avoid the Herxheimer Reaction (which is something I experienced while treating the parasitic infection I had – the die off of the parasites was happening quicker than my body could flush out the toxins, which resulted in waking at 4 or 5am covered in sweat, with terrible stomach cramps and high fever…would like to avoid ever feeling like THAT again). I am reading some promising things on Amazon but would like to hear from others if anyone has anything to share. I hope this helps me.

Still trying to track down what is causing all the signs of infection/inflammation in my bloodwork. I’ve finally come out of a depressive phase with extreme stress/anxiety and can try to get things done again. I emailed a doctor who my doctor referred me to who is supposed to be really good at nailing down causes of inflammation in the body. He’s stumped. I’m glad he did make a lot of progress with me, because it was SO overwhelming for so long to just hear doctors continually call me a mystery or a “complex case” but not make any progress!

I also just got my medical marijuana card in the mail yesterday. Looking into making some salve with cannabis oil for my muscle tension, pain and the painful cramps I get with PMS. I’m new to all of this so I need to talk to someone at a dispensary about what strain(s) would be best for my conditions. I just find it all fairly intimidating, especially with the spike in anxiety I was feeling.

The sun came out for a little while today and that certainly helped improve my mood and energy levels. My boyfriend and I had a great talk to the other day too after another fight left us both in tears and I think we are getting to a point where we understand how to properly support each other. We both come from a background of abuse and trauma, there is a lot of pain in both of us. Our issues had been pushing each other apart instead of bringing us together like it should. I’m feeling better about things.

I had decided to go back to therapy also since my therapist told me she would do sliding scale for me once I discovered my out of network deductible is too high for me to ever meet in a year ($4500) meaning I was paying $220 a month for therapy which I just can’t do with my really high mortgage I am paying on my own and all my other assorted bills, loans and healthcare costs. Unfortunately, she can’t afford to see me for what I can afford so I might have to wait until I can spend more or hopefully we can work something out at least for one meeting a month. She’s still only working two days a week (recently back from maternity leave) so we’re both having financial struggles at the same time. At least I am starting to feel more stable though I haven’t seen her in a few months. And even then, I’ve barely seen her for the past year because of how long she was on maternity leave. Maybe I am doing better than I thought.

Hope everyone is doing well!


Thyroid dysfunction

This video is long but very important, this is coming from a person who experienced many symptoms but went many years without my thyroid issue being diagnosed, because, as mentioned in this video, my previous doctors only checked TSH instead of  a battery of other tests that would have identified the issue. If you suspect you may have a thyroid dysfunction, please watch this. It mentions symptoms, including swollen tongue (do you see the outlines of your teeth on the edges of your tongue?) and others including fatigue, weight gain, sluggishness, etc. Be your own medical advocate, demand the tests they suggest in the video if you do suspect you may have an issue with thyroid function. It can change your life. My body temperature was only 96 degrees which was an obvious sign something was wrong. My Raynaud’s has been better, I feel like I am a normal person as far as temperatures go now. Still struggling with fatigue for other reasons but this could help a lot of people out. My advice would be to ignore the sales-pitchy sounding free stuff offer and just pick the important info out.

First guest post – from Tara

I don’t have a nice neat story line to type up, just the typically scattered thoughts of someone who has been sober from alcohol for less than a year. My ability to journal, or to write slightly more formally such as this, has faded from lack of use in the last ten years. Wanting to write about this hasn’t magically made it any easier, but the difficulty seems entirely self-perpetuated. Well, there’s also the fog of chemicals but more about that later.

The basics of my story are simple enough to articulate, at least in a very general way. I am a thirty-five year old alcoholic who has struggled with mental illness for years. In 2008, I suffered a traumatic burst fracture of the T12 vertebra, which resulted in a fusion of the T10-L2 vertebrae. In July of 2012, I was diagnosed with triple negative invasive ductal carcinoma, and I am BRCA and BRCA-2 negative as well. (I like to call it quadruple negative, but it’s not catching on yet.) There are positives to be found in this diagnosis, such as not having to take any targeted hormone therapy and no increased risk of ovarian cancer. Also, negatives- there are only a few chemotherapy drugs known to work on this kind of cancer, in addition to the tools of surgery and radiation. Having the genetic testing come back negative meant that an overwhelming majority of the research on TNBC is useless in my case. My oncologist actually told me there are no other patients with this combination in the area, so I shouldn’t hope to be easily understood in any kind of support group. How fun to be unusual, right?

At the time of diagnosis, the tumor and necrosis in my right breast was almost ten centimeters, which meant I wasn’t an immediate candidate for surgery, nor were we able to determine if it had spread to the lymph nodes. Luckily, I had a very positive reaction to my first regimen of eight AC-T chemotherapy treatments and was able to have a bilateral skin sparing radical mastectomy in December of 2012. At that time, sixteen nodes were removed on my right side and one was positive for cancer cells. My subsequent diagnostic scan showed no mass, which meant it was entirely up to me if I wanted more chemo. What a tough choice! I did decide to proceed, and just completed four doses of Carboplatin with Gemzar. Everyone on my medical team, and especially my oncologist, has been very clear that this is a WHEN situation, not an IF.

That all said, I would like to talk about a few of the feelings and thoughts that are consuming me at this juncture. My needs, emotional and physical, feel overwhelming and huge. The gulf between what my mind is screaming out for and what I express is immeasurable, as is the gulf between what I ask for and what I receive. Easier in its own way is the habit of shutting down and responding only to the least threatening of companions- my partner and my pets. Socializing almost entirely online, I feel support but also a painful awareness of the distance between myself and others. The people in my life that want to provide the most support happen to be the least able, for a variety of reasons. It’s difficult to avoid developing resentments, and I still haven’t figured out a healthy way to do so.

There is much difficulty in finding perspective, in understanding each new emotion or permutation of thoughts. Not only overwhelmed at times by the prospect of each next tiresome step in this cancer process, I am also despondent when considering the life of sobriety that yawns before me, shapeless as of yet. I’d perfected the art of self-loathing and self-abuse, to change now and to become MORE than the sum of my problems is daunting at best.

And then one begins to approach the long term issues, terrified and convinced of my obvious imminent failure. Is school just a way to expensively delay the inevitable, as seems to be the case with so many of my peers? Does my brain even work that way anymore, or is it too damaged by years of abuse and illness? If I fall into a heap on the floor when faced with the prospect of paperwork, who am I to talk about going to school? If not school, what else- an inexplicably long life of customer service slavery, always wishing for each day just to be over?

I’ve lived that way for almost my entire adult life, watching the clock and waiting. Tomorrow will suck less, or maybe next week. If I just push through this next ten minutes, or ten hours, then maybe I won’t be in pain and exhausted by just the machinations of life. That has certainly stood me in good stead as I deal with cancer, and so I joke that being an alcoholic has made this easier and vice versa. Cancer certainly woke me up, and allowed me to understand that there’s more fight in me than I had come to accept.

No longer drinking is a huge step, and one that can be almost impossible for the active alcoholic to achieve. In a strange way, I think that all the drugs they threw down my gullet caused enough of a fog that it softened the worst of the emotional effects. Or perhaps that all lurks, waiting for me to be able to process? Either way, this is the most intense burst of emotional growth I have experienced thus far in my life. Remembering each day to be grateful, even when I am in crippling pain, is extremely difficult to do but will hopefully become easier with more time and work.

Ugh. More work.


Discrimination in healthcare

A friend of mine shared an interesting article with me the other day titled “The Gender Gap in Pain“. This article focuses on the fact that women appear to be very much more likely to experience chronic pain, yet are more likely to be dismissed by the medical system. In reading this article, it appears women who complain of pain are more likely to receive a response that it is “all in their heads”. I don’t think I have received that response necessarily, but I have been treated rather rudely by doctors who I think assumed I was looking for painkillers. A drug-seeker. I think this has more to do with how I look than my being female.

I have brightly colored dyed hair, visible tattoos and piercings. I think the doctors assume that a person who looks like me can clearly handle pain, and while I admit I have a very high pain tolerance, what I do with my body has nothing to do with my illnesses. Getting a few hours of tattoo work done is not the same as living in pain daily, modifying my entire life to revolve around this situation and otherwise reducing my quality of life. The thing is, when I go to the doctor, I am not looking for pain meds. I am looking for a solution.

I do not want to mask my pain. I do not want to become dependent upon some pills. I want to find a reason for these problems, find some resolution or at least a treatment plan. It took me five years to be diagnosed with fibromyalgia and chronic fatigue syndrome, only because I finally met a doctor who seemed to have an investment in the health of his patients. I can’t even recall how many different types of medical professionals I have seen and how many have just outright dismissed me as being a lost cause. Countless others have described me as a “special case.” This gets incredibly annoying to hear; if I am so special, why doesn’t someone sponsor me? I’m only slightly joking. Surely it’d make a hell of a research paper, or something.

On this topic, recently Shannon Larratt, a body modification pioneer of sorts, has passed away (by his own hand). He left a very lengthy note which highlights some of the issues he ran into with his medical care, parts of this note are in the article. He was suffering from a rare genetic disease. He was a Canadian and it appears from the article that there are actually quite a few similarities in the healthcare in Canada and here in the United States. In part of his note which struck a cord with me, he writes, “…I believe this was in part because of the prejudice of multiple doctors due to my appearance causing them to stereotype me as drug seeking (and the simple reality is that it can be hard to tell, and we are so cruel as to prefer to “punish” the sick than to “reward” the mentally ill). I wish there was some way to make those doctors understand the cruelty they enacted.”

If anyone wants to read his note in its entirety it is on his blog, but be warned, the content is very emotional and heavy. I was in tears by the end.

I don’t think I am suffering nearly as much as Shannon did, as he was diagnosed with a very rare disease known as tubular aggregate myopathy, which I admit I had to look up as I had never heard of it. But, why do I compare how much I am suffering to someone else? Why would anyone compare like that when it comes to chronic pain? Do you think this is what doctors do? Perhaps it is.

I have noticed just in my personal life that when someone I work with is sick, someone is bound to say something that suggests they do not believe they are actually sick, or they do not believe they are ‘sick enough’ to stay home and rest. What causes this? I’ve noticed it also when I happen to mention being in a particularly large amount of pain, others sometimes roll their eyes as if I am dramatizing something as small as a paper cut. I tend to keep my mouth shut. This even means over the past five years of dealing with this pain, only a few particular instances have been extreme enough to allow me to express my feelings to a doctor. Especially while my lawsuit was still in progress, I did not want to give opposition any reason to label me a drug seeker or addict. I kept quiet about my pain for a long time, until I was either in too much pain to eat or breathe, or until I found a doctor I could trust.

Have any of you experienced what you perceived to be discrimination while attempting to receive healthcare? What do you think they were judging you on?

I have heard from a couple people who state they were treated differently when on state funded healthcare programs as well. Let me know your thoughts, I am interested to hear other peoples’ experiences. I’d also like to hear good experiences because all this negativity can really make me feel sad for the state of affairs currently, though I am hopeful things will change if enough people speak out.