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!

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Facebook page

I’ve just started a Facebook page for this blog in an attempt to generate more interest and discussion. Feel free to check it out here: Diagnosis: Unknown on Facebook and share with anyone you think may be interested.

You will also have the option to message me privately on that page if you so wish. I encourage people to continue to comment here if you are more comfortable, as you can remain fairly anonymous. I know many people use their real names on Facebook so if you are more comfortable leaving comments here, by all means, please do.

Also, I am still looking for favorite relaxation methods for high stress/high anxiety. I hope to compile them on a page for reference.

As always, thanks for reading!

Anxiety through the roof

I don’t know what is affecting me lately but my anxiety has been sky high for the past few weeks. I don’t know if anyone else is like this, but basically I keep this ongoing list of things I need to attend to in my head (this can be as simple as going grocery shopping, responding to an email, etc. to something much bigger like…well I don’t know, scheduling something that’s super important) and if anyone tries to push me harder to attend to one of those things on the list, the more it overwhelms me. And that’s where I am at right now.

I think part of it is financial stress. I was lending money, more than I felt comfortable, to my boyfriend and this was stressing me out… but I felt as if I *had* to keep doing it. He’s paid me back all of it and a little extra and I feel a lot better now, but there is still this weird looming anxiety over me. There’s a lot going on but there is always a lot going on. Part of it may be the newest labs. I don’t really know. But now that the boyfriend will be on his own financially, I am able to focus back on my priorities. I am living beyond my means at the moment which is always scary. I just bought my first house in November and now I’m housepoor. I’m continually paranoid that something will happen to my job or something worse will happen with my health and I’ll lose everything I worked so hard to get. It’s hard not to think that way when I just watched this happen to a friend (who eventually passed away in October after losing his house and going bankrupt by medical bills).

The past couple weeks have been particularly difficult as adjusting to hormonal medication is never easy and with everything else going on, I’ve felt like tearing my hair out. I had a bad argument with my boyfriend and I’ve lost all patience for conflicts like that. There is nothing productive about casting blame, raising voices, etc. so I just gave up and said “I’m done” over and over again. He took off for awhile and I had some time to think about whether or not I cared if everything just ended right then and there.

Frankly, I am used to going about life on my own. This makes it difficult to let people close to me. Also with my history of letting the WRONG people close to me, I do worry about making those choices again. I love him, but I don’t *need* anyone. It sounds even more cynical now that I have written it out… but honestly this is how I feel. I have such little desire for this kind of drama. I have no energy to dedicate to it. So now added to my long list of “to do” items is to have a serious discussion with him about who I am and what types of things really strike nerves that I’d rather not be struck. While he and I originally met over a decade ago, we didn’t truly get to know each other until recently, specifically the past five months. He’s new to dating someone with chronic pain/illness and some incredibly insensitive things have been said. I lost my temper. I really feel at the end of my rope lately.

Perhaps related, twice in the past couple weeks I have noticed some extreme flushing of my throat and chest. This is new to me, so I don’t really know what’s causing it. Perhaps the stress/anxiety is getting so bad it’s causing my blood pressure to rise? I’ve almost always had low/low-normal blood pressure. But I also fear things may be different now that I have received these results in my labs with the incredibly elevated lipoprotein A levels… I am talking completely out of my ass here, because I don’t know enough yet about how/why these levels are SO high. It scares me though, because I have a few items in my labs that point to increasing risk of developing blood clots, stroke or heart attack.

I feel quite a bit out of control of the situation, as my cholesterol levels are fine. There doesn’t appear to be much I can do about the way things are right now. Also, I think I have experienced a flaring up of the Epstein-Barr virus. I think I noted in a previous entry that those levels were higher than normal on my latest labs as well. For the past week and some change, I have had an extremely sore throat, swollen tonsils and pus on my tonsils/back of my throat. A doctor I saw was so convinced it was strep throat that I was given antibiotics before the culture results came in. When they did, it was negative for strep and determined to be a viral infection.

I’m starting to wonder if I should just push to have my tonsils removed. I tried years ago but now a couple practitioners have tried to steer me away from that, saying the risks outweigh the possible benefits.

Yesterday was a bit rough but I ended up meeting up with a friend I haven’t seen in years who was just recently diagnosed with fibromyalgia and chronic fatigue syndrome. I talked to her a lot about treatment, symptoms, etc. and let her know I’m here any time she needs to talk, because I GET it. If I could just find a job being some kind of advocate for people going through these things, I would be SO pleased. I just really want to help people so even if it seems I have made at least minimal impact, I’m happy about it.

I’ve exhausted myself just typing this entry… more at another time. If anyone has favorite stress relieving tips, I would love to hear them!

Active Epstein-Barr virus

One of the troubling items I have noticed in my blood work over the past year is a fluctuation with the Epstein-Barr virus. For those who are unaware, this is the virus that causes mono. I had mono when I was 18 or 19 and usually what happens is the virus goes dormant, but will show in blood work. However, the levels have changed over the course of three or four different blood tests which suggests this virus is still active. Does anyone out there have any experience with active Epstein-Barr virus? I’ve read some things, but you know how reading about medical stuff on the internet can go. I don’t want to induce a panic attack for no good reason. I am wondering though if this is to blame for some of my fatigue and maybe some of the other indicators of infection in my labs. There are a few things pointing to inflammation or infection in my body that my doctor and I have yet to nail down. So, anyone with any information out there for me regarding Epstein-Barr?

Trying to be more active again

So, I have been posting quite a lot lately because I am trying to get this blog back off the ground again. I went many months without updating due to some major life changes, but really feel like I lost the small handful of followers I did have. I want to get people involved again. One of my goals for this blog was to kind of provide sort of a loose knit support group for people going through similar things. If you know of anyone who may benefit from such a thing, let me know. It can be incredibly alienating and lonely to deal with chronic illness(es).

I also am still looking for guest posts. You can remain anonymous much like I do, or whatever you feel comfortable with. I want to provide a platform for people to share their story, vent, reach out to others, or whatever you need/want to do.

For anyone new to this blog, my first post is here and sums up (for the most part) the issues that I struggle with, mainly fibromyalgia and chronic fatigue, but this post is a good introduction: The Beginning of a Long Journey

I have been considering throwing together a list of helpful practitioners as well, and while I have not even revealed where I live, I would be interested in receiving names of any practitioners all over the US and perhaps even in other places in the world just so people who stumble on this blog may have a helpful resource to refer back to. If you’re anything like me, it took many years and a lot of trial and error to find a helpful team of practitioners to manage your illnesses.

I will try to be more present now that I am in a stable living situation and have a lot more time at home to dedicate to this project. Let’s get some conversation going.

Follow up

As a follow up to my previous post regarding ASMR, I have just come across a video that explains ASMR and goes through many different triggers so you can find out if you can experience those “head tingles” that people in the ASMR community describe and what particular triggers work for you, if any:

Of course, even if you don’t experience the “head tingles” hopefully it will at least be relaxing for you. I find these videos help me sleep.

In other news, my major accomplishment this week was finally getting my medical records sent to a clinic to get approved for a medical marijuana card. This is something I have been meaning to do for about a year, but the cost associated is rather high and sometimes I get a kind of medical fatigue… too many appointments and I get burnt out. Something gets placed on the back burner. Sometimes this is chiropractic appointments, or dental appointments, or whatever. Anything I feel I can spare or put off for awhile gets ignored. This allows me to recoup a little bit, save a little money, de-stress a bit.

I have some hope that with my card I will be able to find some products that will help me with my pain levels at work. I work ten hour shifts (sometimes longer) and work in a high stress position, and to make matters worse, it’s an environment that is purposefully kept cold. Even WORSE, I have had no heat in my house for weeks, including through a very bad freeze and snowstorm, though I survived with a couple space heaters and the work in my house is continuing on… I should have a working furnace again at the beginning of next week. Of course the weather has improved since the freeze a couple weeks ago but still. I am very sensitive to cold thanks to Raynaud’s and my thyroid issue.

Anyway, a friend of mine who is also a cardholder told me about some kind of salve purchased from a dispensary that may help me out a lot. I did also recently get a topical anti-inflammatory/muscle relaxer from a compounding pharmacy that my doctor prescribed for me, but it is expensive and difficult to apply by myself. A guy at the clinic I went to told me this salve has kind of a warming sensation too which could be very soothing for me.  ANYTHING that can be done to reduce my pain and tension would be a life saver for me. I keep feeling like I have tried everything, but there’s always something else. So we’ll see how it works.

On that note, I just have to complain a little bit. I am sure that everyone with any chronic illness has run into the acquaintances who mean well but just kind of continually cause frustration with unwanted medical advice…. or maybe I am just kind of an asshole, I don’t know. I get pretty irritated with unwanted advice in general, I don’t know why but I tend to feel offended even though it is irrational. I realize people just want to help, but after so many years, tens of thousands of dollars and countless hours of medical care, I feel I have heard it all. Suggesting I take vitamin D is not exactly groundbreaking advice.

I did, though, find an article I really liked regarding how to understand and interact with people with chronic pain. I feel much of it applies to other chronic illnesses and even some acute ones. I keep sharing this, hoping my friends/acquaintances will at least give it a cursory glance, or other people may find it helpful for the people in their lives if  they also suffer with a chronic illness: How to Understand Someone With Chronic Pain

Emotional manipulation

I came across an article this morning about emotional manipulation and how to protect yourself. Having been in an incredibly damaging relationship with someone I am 99% sure is a sociopath, it spoke to me. Also having grown  up in an abusive home…I see there are a lot of crossovers, and I guess it is unsurprising that I would end up in a series of uncomfortable, unhealthy and downright abusive relationships over the years.

To me, it was always the emotional abuse that was worse than the physical. I have only been in one relationship that included any kind of physical abuse, but my childhood had its share of physical abuse. Mostly though, it was the words that stung. The words and threats are what manipulated me into believing I deserved that kind of treatment. I always said I would rather undergo any kind of physical pain over emotional pain. I stand by that; my heart is sensitive, my tolerance for physical pain is sky high.

For those who would like to read the article, I will link it here: 8 Ways to Protect Yourself From Emotional Manipulation. I implore you to read it, even if you have not been through such a situation, it may help you understand others who have been. Empathy is incredibly important to me. Helping to understand victims will help them feel less alienated.

It drives me crazy when people get upset with the victim in such circumstances. Many people do not understand the victim cycle. You end up feeling brainwashed…it IS a form of brainwashing. If you want to be aware and able to help someone who is a victim of such an abuser, another good thing to read up on is gaslighting. This is a form of manipulation that has the victim questioning their own sanity. I have been there. I didn’t have anyone around me who understood what was happening. I was being judged, blamed and called crazy by a handful of friends and acquaintances who did not understand what I was going through. I eventually was strong enough to get out. But it wasn’t until JUST NOW, when I read this article, that I realized this happened to me in my home life as well. I was just mentioning it the other day, actually; so I am not sure why it clicked now. The Wikipedia article for gaslighting explains it all.

I blamed myself for many years as a child and into adulthood for the things happening around me. My father continually denied any of his abusive behavior, accusing us all of being crazy when we were brave enough to confront him. This is why I started to “punish” myself at a young age, moving from beating and bruising myself with heavy objects, to burning myself with metal items heated red hot or chemicals that would eat through my flesh, to eventually cutting. I started with a pocket knife my father gifted me and ended with a razor blade busted out of a safety razor. I cut myself so deep I went into shock, and thus began my desire to stop the self-mutilation I had by this time been entrenched in for about a decade. I thought my very existence was the reason my father was so angry, and I was making myself pay for it. Perhaps he was mad that I existed, but it was not my fault. I did not ask to be born and I certainly wouldn’t have asked to be born to this family. I finally realize it: It is NOT MY FAULT.

So. No surprise I would continue on the path of self-abuse for a long time until I tried desperately to get help. I find I still struggle (see: last relationship) but I am hopeful for my future now, perhaps for the first time ever. I feel very much free from many things in my past, though occasionally I am still haunted by particular memories. Many of my friends have also lived through traumatic childhoods; most of them, however, have made peace with their abusers and now have as healthy of a relationship as possible with their families. I fear I will get no such closure. My boyfriend told me he doesn’t know what he would do if he didn’t have the support of his family and knows how hard it was before he had that support. He told me he knows how hard it is to get where I have gotten without any help. HE ACTUALLY UNDERSTANDS ME. I cried so much I felt like a dried out husk of a human. My accomplishments and my struggles have never been acknowledged like that. He is proud of me. I don’t feel like anyone has EVER been proud of me, and if they were, they certainly didn’t say so. It touched me and it was exactly what I needed to hear and have needed for years. He gets me. I feel so lucky.

I can’t really relate to people who DON’T come from a traumatic background and/or don’t have some kind of chronic illness. Obviously the reverse is true as well. It’s difficult to connect with someone who comes from a wildly different place than yourself.

I am happy to say now that the people I surround myself with are positive people making changes in their lives for the better despite their painful history. This is an improvement over the years I spent doing damaging things with other damaged people. No goals, no plans, no care in the world but to forget the monsters inside our own heads. I thought I would not live to see 25, and I didn’t really care.

I dragged myself out of that pit, and I did it all on my own. I guess this is probably my greatest accomplishment. I quit cutting, I quit drinking (I do drink occasionally now but NEVER to get drunk and tend to veer away from hard liquor) I quit a lot of other things including negative self-talk. I felt like that was really stupid when I first read/heard about it but it is very important. I am less critical of others and less critical of myself. Not that I am perfect with it just yet but my quality of life has improved over the past couple years for sure.

I’m pleased with life now and have hope for my future. Eyes wide open.