Rough week

Last week was a pretty bad week, but I feel that things are climbing back upwards slowly but surely. I am starting to think I need some medication for my anxiety. I’ve tried just about everything that doesn’t include pharmaceuticals to no avail. I had another panic attack recently, having two of them so close together frightens me. I’ve only had a few in my entire life. I did some reading up on them and it appears that if you leave panic attacks untreated, they can turn into a panic disorder. Well, that’s the last thing I need, really.

I took some klonopin a friend had given me to get me through a couple stressful social events and feel like it really helped me relax and act like a normal person in a social situation, something I have never experienced before because I am soooo used to freaking out in situations like that. I typically just shut down and don’t talk, mostly because I fear saying the wrong things, or weird things, or not having anything interesting to say, etc. I always assume people will be bored or irritated by me. So it was nice to have a sort of normal experience. The only thing is I think it messed with my memory a bit, which is already a little suspect with my brain fog and whatnot.

My homework for myself lately has been reading up on being a toxic person. Previously, I had read up on other people being toxic but never thought about the fact that I may be toxic as well. It explains a lot about the type of people I attract, both in relationships and friendships. I never thought about myself as toxic because I felt it was all about intent. I try to avoid making anything personal, even in arguments, not dragging out peoples’ shortcomings and throwing them in their faces, etc. BUT I realize that my (negative) feelings are so palpable that they suffocate the people around me when I am in the midst of dealing with them. I realize how painful and draining this can be for others because I grew up in a very volatile situation, though I think I was more afraid of my father when he was angry because it could and would easily switch from him being frustrated at some situation that had nothing to do with me or my brother/mother/etc. to taking it out on one or all of us. I became trained to be frightened any time his mood went south regardless of how or why. I don’t want to be like him, at all, so when I hear my anger hurts those close to me even though I am careful to not direct it at anyone, it really touches me and I want to do everything in my power to avoid it.

My boyfriend and I are both battling these things, whether he realizes it or not. Something in my tone of voice will trigger him, and he will fire away at me. Because I am still unaware of these tones in my voice (they do not always match up with how I feel inside) it takes me aback when he starts yelling. I don’t do well with yelling/slamming doors/etc. so then I am triggered and then I start yelling. It’s a downward spiral from there. I end up shaking and crying and he gets so defensive and puts blinders on, not realizing that he has any fault in this as he is just “reacting” to me. I think that is utter bullshit and refuse to take 100% of the responsibility, and we did discuss it last time this happened. He agrees and apologizes for his part. But I still feel like we have a long way to go, because he likes to drag out very personal things when he gets angry and that hurts me a lot. Knowing that he thinks I do not do enough for my mental health especially aggravates me. I do not have enough time in my schedule to fit in more therapy, nor more money. He thinks I should find a provider in my insurance network so it is cheaper and therefore the idea is I can go more often. However, my argument is… it has taken YEARS to find a therapist who works for me. I am not willing to go through the motions of trying out multiple providers again, wasting time, energy and money to find someone who will work for me only to start all the way over from the beginning. It took me many years to find my therapist and I am not willing to give her up. Plus, I rarely even have time to go have “fun”. If I cram all my “free time” into appointments, then my entire life is really just appointments and work. What about my work/life balance? There is no balance there. I still don’t even know what to DO for fun. I have lost that part of myself long ago. My life has become this search for restoring my health or finding a way to cope with all of these things, I have lost sight completely of all the things that used to make me happy, the things I thought were fun. It’s depressing! I am even dealing with a lot of anxiety around the idea that I have to talk about myself at work soon in front of my team because we merged with another company and we are just doing this thing every week where one person from each department will introduce themselves to the whole team, talk a little about the things they like to do, etc. and I am just sitting here thinking… what do I like to do? What will I talk about? “Hi, I enjoy working my life away and fighting to get my life back from many chronic illnesses and mental health issues, so I basically don’t have any hobbies anymore.” I mean really… I feel like a shell of my former self, even more so than when I was really deeply depressed. At least then I was constantly writing and painting.

Tomorrow I finally go back to my doctor and will discuss the idea of checking for Lyme disease, and maybe discussing anxiety meds. I don’t know how he will feel about the last part, since he is a naturopath, but he has been open to prescribing me things I ask for because he knows I won’t abuse it and that I am very self-aware and have done a lot of research about things.

On another note, the medical marijuana card was a great idea. I have found some products from dispensaries that really help me with my pain without getting me high. I got a very potent tincture that helps me with my pain but doesn’t mess me up so I can take it at work. I’ve also found some particular strains that I can smoke when I am at home that help with pain without making me tired or hungry, so I can stay focused and get things done. Aside from gabapentin, this is probably one of the most helpful things I have gotten for myself. I have now just started using Rick Simpson oil (RSO) and I can’t comment quite yet on my experience with it as I just started last night. Supposedly, people have cured various cancers with it and helped all sorts of symptoms from varying illnesses including lupus and fibromyalgia, but I am skeptical. However, I can say I am happy to have found something for me that works, I previously rejected people when they told me I should get my card, thinking all stoners think weed is miraculous and can fix all problems… shows what I know. Hopefully it will be decriminalized on a federal level so I don’t have to worry about being drug tested at work and potentially losing my job.

Anyway, that’s about all there is to report. I’ve still been incredibly fatigued. I feel as though I used up all my energy last year and the beginning of this year, when I bought my house and did a ton of work on it. Now all those projects are half completed and the disarray is making my anxiety worse. I’ve been depressed too, with the PMDD going into overdrive… I always think, has it been a month again already? I need to also talk to my doctor about eradicating my period again which I did for 11 years and didn’t have these types of symptoms. I can’t live with it.

I also lost a pet recently, I have snakes. One of them got sick and I took him to the vet, unfortunately it appears the respiratory infection spread quicker than I caught it because the very next day, he was dying when I got home from work. He died right next to me and I just sobbed and sobbed… didn’t help it was one of the days my boyfriend and I were at odds and he was not there when this happened. We fought all day long and then this happened…and then we fought some more. I need a vacation, pretty damn sure of it.

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!

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!

ASMR – Autonomous Sensory Meridian Response

So, I completely stumbled on ASMR videos on YouTube on accident the year before last and have just started watching/listening to them again for stress  relief and relaxation purposes. If you aren’t familiar with ASMR, it stands for autonomous sensory meridian response. I guess the general idea is this ‘tingling’ sensation some people report when they are exposed to certain stimuli. A lot of the videos on YouTube revolve around whispering or quiet talking, tapping (such as fingernails on various surfaces), crinkling sounds, etc. The tingling sensation and all of that are controversial and not something that has been researched really, but there are certain sounds that do really help relax me.

This was the first ASMR channel I came across: GentleWhispering

Have any of you tried relaxing with videos like this? I also had some luck with guided meditation recordings though I haven’t used one of those in a couple years.

What works best for you? I am always high stress and looking for new ways to relieve stress.

Question

What is the most unconventional treatment you have undergone for any type of illness, chronic health problem, mental health or addiction issue? I love my new doctor, we are doing some seemingly strange treatments (which I will go into in another entry) but it seems to be working so far, pain level is much lower than typical.

Is there any treatment you are completely opposed to? I don’t like the idea of back/spinal surgery at all. Nor any surgery to do with my ribs/ligaments.

edit: Thinking about disabling “likes” because I want to really drum up conversation here. Do you think it’d be more likely to encourage people to comment rather than just passively hit a “like” button?

3/14/13

I was thinking a lot today, and I really feel I have made some astounding progress in the past five years. Five years is the marker because that was when the car accident that changed my entire life occurred. This has forced me to push myself harder, take care of myself and learn to live with things that I have no control over all at once.

I have a very long history with severe depression, have struggled with alcohol, been homeless and have always had a weak immune system. I never had much going for me it seemed, and it took a long time to learn to even respect myself.

Five years ago, I was living alone in a two bedroom apartment. I had a good job. I had, for the most part, removed alcohol from my life. I would go to bars and clubs and not drink, mostly because I was very strict with my money (having come from not much of it!) and didn’t trust myself, either. I never did quit drinking completely (there were a few years I did go completely alcohol-free), but I have learned where to draw boundaries, and I absolutely loathe the feeling of being drunk now.

So, while it seemed things were looking up, I still somehow had ended up with shingles. I was only 24 and didn’t think I was dealing with a lot of stress at the time. I was still healing from that when the car accident happened.

“The Car Accident” has been a phrase I have been used to repeating over and over again in the past five years. Probably to other people it doesn’t signify much, but to me, it’s such a milestone. I have to assume other people imagine I am over dramatic about it but it really did change everything, for better or worse. Both, really.

I lost my job after this accident, of course I was injured badly (nothing obvious or visible like broken bones) and had to remain on bed rest for about three months. I wanted to go back to work. I was tired of laying around by myself, suddenly becoming very dependent upon others. I couldn’t even manage to go grocery shopping by myself, it hurt too much to lift a bag of food. I fell into a deep depressive phase while I waited for life to get back on track. After three months, I did return to work, part time by doctor’s orders. This put me right in the line of fire at my workplace. They were going through round after round of layoffs, and this time I was let go, because I was not as productive as the others.

Of course not.

I had already been fretting over how to pay my bills when I was on bed rest. This made things worse. Luckily one of the first things I did was go to my credit union and apply for a credit card. I was approved and this was how I paid my bills. It took forever for insurance to pay out for personal injury protection and my unemployment was not much. I scanned job listings day after day, only to become more depressed over the fact that I couldn’t seem to find anything I could *physically* handle at all.

I was a previously independent person trying to make due relying on others and being out of work. This was a difficult lesson to learn, learning how to ask for help for the first time in my life since childhood. However, it’s an important thing to learn in my opinion, so I have to say learning how to ask for help has become a benefit in my life now.

Regarding my depression…this comes from my turbulent childhood, living with an abusive alcoholic father, as well as a big dose of anxiety. I’ve been in therapy on and off for many years, but due to changing employment situations and lack of insurance, I had a hard time sticking with it. There doesn’t seem to be a large amount of help for unemployed or uninsured people struggling with mental health issues unless they are homeless, addicted to drugs, hardly in control of themselves, etc. Not that it is not important to help these people, but people like myself seem to be viewed as “doing okay on your own” and dismissed by these organizations. That was my experience, anyway. I have had very terrible therapists and some great ones, but last time I quit seeing a great one was because I suddenly received “pre-existing conditions clause” notices in the mail from my insurance at the time. I had already racked up about $4000 in visits by the time insurance notified me they would not cover me. It seemed so callous and cold to deny someone with mental health issues simply because they’ve had a history of them. The medical system can be a very disappointing and frustrating thing to deal with.

So after losing my job and being still too injured to just apply to every job I could find, I then had to worry about insurance, how to care for my injured self without breaking the bank that was already pretty much broken. Car insurance covers a person injured in a car accident for a maximum of one year, regardless of the issues. It would be up to my lawyer to go for the rest of my medical costs. Of course, there was another lesson to be learned there, as well. I was bitterly disappointed in my choice of lawyer after three years passed and the settlement was finally in my hands.

I made a huge decision when the car insurance stopped covering my medical bills. I promised myself that it was worth it to continue to receive care, even if I had to rack up debt. The savings I had was drained to pay for my care and my basic bills. I did not care, or tried not to, because I knew I owed it to myself to finally learn to love myself. First I would learn to do so by physically caring for my body. The harder part came later when I had to make peace with myself emotionally and mentally.

I don’t think there has been more than two weeks that have gone by without at least one appointment related to my physical or mental health care in the past five years. Many times I would become overwhelmed with how demanding this schedule was. Mostly now I deal with it well, because I have a car now, which makes it a million times easier to get from point A to point B, especially when my practitioners are spread all over the city and into the suburbs. Doing all of that on the bus was very difficult.

It took three years for me to finally land a full time job. I was so grateful. I finally felt I could get back on my feet, get insurance, take care of myself. Of course, no… the pre-existing conditions clause kept me from being able to utilize my insurance for almost all my problems until a year had passed. I had to pay for insurance I could not use for one year before I would qualify. This was very upsetting. By this time, I had definitely come to notice my full time job that I was ever-so-grateful for was too stressful for me. The job itself was fine, but the environment was not. People I worked with were incredibly mean because they were under stress. I was in a position that allowed them to feel okay looking down on me and treating me accordingly. I had to get out of there. My headaches were becoming more frequent, tension was at its all time high in my muscles and I suffered my one and luckily only migraine there. I noticed myself snapping at people and in general being a not very nice person. I was of course very downtrodden most of the time and I am not good at hiding my moods. I was, in short, a very miserable person to be around.

I ended up applying for other jobs, and surprisingly, it was the one that had no open positions that I ended up snagging. I was so desperate for a new job that I emailed my resume and cover letter to a company that sounded like one I would enjoy working for. I was right, and still work there today. My insurance coverage started with them after my first 30 days of employment. I was extra grateful for that, and even better, it was the same insurance I had at my last job that I could not use…only now I was free of the pre-existing conditions clause.

This is really where I started putting in all that I could into myself.

I worked so hard at my job, and it was recognized. My manager has been very flexible and understanding with my schedule and all my appointments. I went to every single specialist I had wanted to see but was prevented from seeing before. My schedule was completely packed with my new (quite demanding) job and all my appointments. I’ve been in therapy now for awhile, the longest I have seen one therapist ever. I’m off pharmaceuticals for depression. I’ve gotten new diagnoses, things that probably have been with me for many years, and now that I am receiving treatment I DO see and feel a difference. I am still very exhausted, but my journey has really only just begun.

I feel that I finally can look at myself and see the potential I have. Instead of constantly belittling myself, I see how intelligent I am, how well I can handle difficult situations and how much I have accomplished even against very bad odds. I think to myself what an amazing, unstoppable force I have already been, even when I just wanted to sleep all day, just give up. I can only assume I will be able to finish every task I set out to, especially once my issues are properly managed.

On top of it all, I have a wonderful partner who understands why I have no energy to handle household chores often, who always handles them without begrudging me. He’s learned a lot and grown too over the years and although I have accomplished nearly everything worthwhile in my life on my own, it is a breath of fresh air to have someone stand by my side and truly understand me and what I have gone through, and am still going through. He’s changed, I’ve changed, we’ve changed. It’s a wonderful thing to reflect on.

I almost feel as if I owe an apology to anyone I have met within the past five years; I feel as though I should say that was not me they met, but a shadow of me, someone overburdened with things they did not understand or know how to handle. As a result, I know I was unpleasant to be around at times. But with a lot of work in therapy, a lot of harsh self-reflection, a lot of kind self-love and treating my body with the best healthcare I can find, I finally feel as though I am becoming the person I know I could be. It sounds so cheesy but here I am thinking this way. When I think back on my past, it seems just short of a miracle.

I have a lot of wonderful friends who have walked beside me as well, and I have learned what kind of toxic relationships to watch out for. I secluded myself a lot in the past couple years, mostly so I can finally focus on me and get where I need to be. It’s an easy way to see just who does care enough about you to keep in touch. I am not the most open person normally, and would not type all of this out if it were not anonymous, but seeing that I truly have friends who love me and care about what is going on in my life is worth so much to me. Learning who to cut out of my life was hard but beneficial. I am very sensitive and typically put people I care about before myself. I have had to reverse that in the past two years or so just to get where I am today. I try to be there for people I care for but know where to draw the line so I don’t exhaust myself. If I don’t take care of me, how can I take care of others?

I’m not going to say life is perfect, because there are still days where I really struggle with the pain, or the depression, or just the idea of how much has changed and how much work there is left to do. But I will say I am grateful for all the lessons even though they have been incredibly harsh at times. I’m finally the one in control of my destiny instead of standing by and just letting things happen. I feel empowered by that and hope that I can keep this strength for the rest of my life.