Antivirals, wow

Just a quick update. I've been put on Valtrex for my chronic Epstein Barr and this has helped me significantly. I'm almost normal these days. I look healthier than I have in years. I'm just a bit anxiety ridden. If reducing my dosage of Armour thyroid doesn't work, I'll try Buspar. I need something to keep a lid on this. I found a bruise on my niece, recently. A huge one. We reported it to Child Protective Services and they ended up arresting her father. Her mom is in a mental hospital and she may get out soon. If this happens, I will be reluctant to visit. Her drug problem is quite severe and it is very difficult to witness. Also, she has physically assaulted me on multiple occasions. So, that's basically a huge part of why I have anxiety.

The bummer these days is that I'm suffering from a slipped disk. I wear a neck brace at night and in the car and I have been taking muscle relaxers. Also, I have been seeing a physical therapist. I want to get back to the gym, so I really hope this doesn't last. Unfortunately, it's not getting better very fast and the doctor seems concerned about this. It's just one thing after another. Arg.

Cortef saved my life

So I've been on cortef now for around 7 months and the difference is like night and day. I can't believe all the changes that have occurred over the last two years! I'm turning 32 next week and although I have been sick since about the age of 24-25, I didn't really start making huge life changes until the end of my 29th year. In this time I have gone gluten, grain and dairy free. I started on Armour thyroid and cortef. I've lost about 25 pounds, my skin has cleared up, I'm less puffy, I have way more energy, I'm less depressed, I no longer have panic attacks....The list goes on. I'm back in school and I'm actually able to do it. This is all very exciting, as it was not clear from the beginning whether or not there was any hope for me. The last big change was the cortef. Before that, although I had come quite far, there was still some major stuff holding me back. I had trouble with energy levels. I had an all consuming sense of weakness that kept me from really being able to exert myself during exercise. During yoga, at times I would have to stop in the middle of class and eat something to get my blood sugar back to normal. As long as I'm on the cortef, all is well. If I miss a dose, that sense of weakness and fatigue comes back. The doctor thinks that at some point he will try to wean me off of the stuff, but I am wondering how long it will be before I'm able to go without it. I doubt that I'm there yet.

I still suffer from TMJ and allergies. The TMJ seems totally hopeless at this point. I can't seem to get myself to stop clenching at night. I've tried everything. I need to try meditation but something seems to keep me from it. Haven't figured out what yet. As for allergies, hopefully a trip to the allergist will be a good first step.

Okay, that's all for now. I'm not feeling very talkative these days. I ran out of cortef before the weekend and had to go without it, so I'm recovering from that. It was awful.

Later!

Taking Xifaxan

I don't feel much like writing today but I started on an antibiotic called Xifaxan, so I need to document this. Dr. Weiss thinks I have low stomach acid because I have undigested food in my stool. If undigested food makes it to the colon, bacteria will colonize on the food and proliferate, thus causing an overpopulation of harmful bacteria. He thinks this is why my immune system can't seem to get a handle on this ongoing Epstein Barr infection -- because it is dealing with the nasty byproducts of bacterial overload in the gut. Or at least that's what I think he said to me. I have trouble remembering anything unless I write it down.

Speaking of the Epstein Barr infection, I just got my new blood results back and after a two month reprieve, the mono is back with a vengeance. The good news is that the HHV-6 viral count is entirely normal. So that's weird. I know nothing about different types of viruses or why one would be running rampant while the other is being successfully contained, but that seems to be the case. There were two other things that seemed amiss, the first one was that my iron levels were nearly toxic. Last few blood tests they came out high. He says it is nearly impossible for a mensturating woman to have iron levels that high, so he wants me to get tested for hemochromatosis. The second thing is that my T-3 levels were too high and so I'm going to reduce the amount of dessicated thyroid I take by 10 mg. I knew that I was hyperthyroid because my hair has been falling out. It has been for months and it has gotten to the point where I can see my scalp through my hair in front when it is wet. I may appear to take it all in stride but I tell you, my ego is whimpering underneath the bed. I have no intention of coaxing it out as I figure there's more abuse to come before I get this all sorted out.

I will attempt to document how this trial of antibiotics go, if energy allows. It is difficult. After cranking out a full blog entry, I usually feel like I need a nap.

the tyrant

It is very important to me that I make sense. I have met a lot of people that don't and it scares me. It scares me enough that I make the extra effort in my writing and in my speech to have some sort of logical progression of thought, preferably with a beginning middle and end. Ideally it should be concise. I have become somewhat neurotic about this and most likely at the expensive of creativity. A tyrant lives in me and slashes to pieces just about everything that I do. Creativity is messy and inherently risky, so slash, slash, slash. But violence is pathetic and so ostensibly so is the tyrant. Ironically so, because everything the tyrant does is to appear powerful. One day I will figure out how to non-violently dispose of this despot, but until then I will stay true to my pacifism and simply refuse to humor him and hope he goes away.

In this blog, I have told myself that I would not hold myself to this standard. That's why none of my friends are aware of it. That and I don't want them reading my sick rants. I'm still very secretive about the extent to which I struggle on a daily basis. So the tyrant still seems to be making most of the rules. Nevertheless, the fact that this blog exists at all is a small act of rebellion. It is my intention to stage more non-violent acts of rebellion in the future.

Sadly, my energy is not so great. Today I feel like I'm thinking through quicksand. It's way better than it has been, so don't get me wrong. Yesterday I did a lot of work around the house instead of sleep. I also woke up early and took a walk. The day before that, which was Sunday, I went with Vijay to the farmers market and then we walked to the co-op for free massage. Later that day I made filet mignon, sweet potatoes, marinated eggplant and white turnips and turnip greens. On Saturday we walked a 5k and went to a Diwail celebration later that night. That's a lot of stuff. I seem to be doing alright. The tyrant whispers in my ear, "you should be able to do more." Go fuck yourself, tyrant. The fact that I'm getting out of bed these days is a testimony to my ever improving, healing, hoping spirit.

I have to admit to feeling lost these days. I'm tired and achey and too young to be tired and achey. I'm mad at almost everyone that knows I'm sick for not better understanding my situation, which lacks patience. If everyone misunderstands, it must be hard to understand, which means that it's less of a character flaw and more of a really big thing to wrap your head around. It's just that it gets lonely in here.

It's hard not to erase this blog because it doesn't have a beginning, middle and end. Just rambling. Maybe I even contradict myself. So what.

It's not yet 11:00 in the morning and it's time for a nap. Later.

Things are feeling a bit better today. Yesterday was a day of hot baths, heating pads and ibuprofen. I find that if I mix ibuprofen with coffee that it really helps with cramps. My cramps are bad. They've always been bad, but they got a lot worse in my late twenties. Since giving up gluten, dairy and grains I have experienced some improvement. The difference is that I'm not throwing up from the pain and asking people to euthanize me. It's still bad though. I hope that I don't have to spend the next 20 years dealing with this, but there doesn't seem to be much of a cure offered in this way. I guess I could go out seeking muscle relaxers but I'm not comfortable asking for controlled substances. I guess it's having seen my sister do it as a drug seeking behavior, those pills scare me and so I just bite into a wooden spoon every month and deal. Dr. Wu has tried several different herbal concoctions. They don't make a dent. I have never thought that they would though. I take them anyway. I'll try anything.

Red wine is another thing that works. Sipping a glass slowly keeps the pain at bay. Too much will you overwhelm your liver, which makes things worse. Also, castor oil packs. I find them to be effective in taking the edge off.

I think about these cramps and how they're probably something somewhat genetic. Whoever my ancestors were, I can't imagine having these cramps without access to hot water, electric heating pads and pain killers. Did they just tough it out? Or did they know something I don't?

Maybe cramps like this are environmental. I have read that endometriosis has been found in women who grew up near industrial plants. I did. So maybe the pain is a result of modern day society, in which case the question is moot.

Despite the physical pain, I find myself in good spirits. Fall is a good time for me. It brings up feelings of newness and school and excitement and news friends. A sense that everything is about to change. The smell of the air and the sound of the leaves rustling when they're beginning to change colors. It also makes me want to see my family, which is what I do every year. I have chosen not to go home for Thanksgiving this year. Going home for Thanksgiving and Christmas is too much for me. Also, Vijay and I would like to trade holidays. This year, he will come home with me for Christmas. That makes me happy. I really want to see the kids soon though.

Anyway, I have a fridge full of fruit right now. If I don't do something with it soon, it will all go to waste. So I'm going to throw it all in a blender and make smoothies for Vijay and myself. Later!

Plodding forward, still an apt characterization

Not to take my current improvements for granted mind you, but three glorious days of feeling wonderful were such a tease. I danced around the house. I started planning my life. I started dreaming bigger dreams. Then I got sick. Minor set back in most cases, except that when I get sick I tend to stay that way for months. The Castor oil packs really helped. But yesterday my adrenal symptoms returned. Weakness and chronic hunger. Ugh. I'm tapering off coffee now because I know how hard on the adrenals it can be. I'm taking this healing thing very seriously. I decline wine when we are out to dinner with his parents. I can take no risks. Anything that might stress my body has been outlawed. Except for coffee which I have to taper off of slowly because the withdrawal is super traumatic. My hopes are that this time it will be easier. Coffee increases cortisol production and I am positive I was using it as a form of self medication.

I have two sisters. One is schizophrenic and the other is three months sober from a 15 year drug addiction. The recovering addict has two small children. She has been calling me lately, usually at night when being alone and being sober become particularly hard for her. I need my sleep but it's also important to support her when she is making good decisions, so I try to talk to her through these moments of difficulty. I stand by helplessly as I hear her describe a state of chronic emotional torture. I offer tips and encouragement but the words come out feeling like lifeless platitudes. I have started having nightmares about her relapsing. I live in fear and this is not good for my adrenals. But life has handed me this particular deck of cards and so I am forced to do the best I can with it. Life has been hard. Dealing with my sisters and their never ending travails have taken a toll on me physically. I often wonder where my life is going and if it is going to turn out okay. I don't believe in God and I don't think that everything happens for a reason, so I have to find some other way to make sense of it. Otherwise, the anger and the fear are going to eat me alive. As Dr. Wu said, "the stress is literally killing you." She's right. But what am I supposed to do?

Still sick, dammit!

I haven't pulled out of this yet. My naturopath is on me about doing Castor oil packs. They do make me feel better, which is funny because they were invented by a mad man named Edward Cayce who was channeling different health ideas from god. So it's obviously something I don't believe in and yet I do it because it works very consistently. Hey, I'm sick people! I'll try anything once and you would too if you felt like me. Maybe you do! But I hope not, for your sake.

I am getting my mind back and loosing it all at the same time. My creativity is making a come back. I mean the creativity that makes my inner terrain very entertaining but makes me look like a retard to the rest of the world. When I have creativity, it takes me three times as long to do something as a normal person. I space out the wheel writing poetry in my head and end up on the wrong side of town. Today I found myself desperately searching for a piece of a paper and a pen so I could jot some ideas down at a red light. Later, it's hard to decipher because the words are scrawled out so urgently that they're almost meaningless. It's been way too many years since I did that! My mind is hard to focus and image rich. Making a point gets harder. I digress and digress and, what was I talking about?

When I was sick, there was no creativity. I did my work without the interruptions of my inner chatter or an uninvited sequence of events that will never happen because reality isn't that fun. I started to realize that people who aren't creative may have a similar experience. It's stultifying. I believe very strongly that the lack of creative impulse is often compensated by a desire to shop. I never used to want to shop. Suddenly, I felt that tickle an awful lot. I was too tired to shop in stores so I did it online. I was a zombie. A zombie online shopper.

Anyway, so the downside is that I'm flakey again. I have locked myself out of the house twice this week. Not to mention a long list of other dumb things I have done out of carelessness. Ugh. The only thing I can say is that I know to appreciate it now. I'm done worrying about being like more people. Other people are overrated.

So there.

Low-Dose Hydrocortisone for Treatment of Chronic Fatigue Syndrome

My mom brought this article to my attention:

Dose Hydrocortisone for Treatment of Chronic Fatigue Syndrome

I have been doing a lot better. Unfortunately, today I'm a little under the weather. My thyroid feels a little bit swollen. I'm still confident that I am improving because my mind is working a lot better. I'm having creative thoughts again, which is a relief. I will keep this short though because I have to run errands.

More later.

Started Cortef today

5 mg. two times daily with food. I feel better physically but am having chest pains. Also, I feel very sleepy. It is a little strange but a welcome change to the all consuming body weakness and fatigue. It appears that my hypoglycemia is lessened as well. Of course, this is only day one. We will have to see how I feel as time goes on. My body has a way of acclimating to things; after brief improvement taking me promptly back to square one. I am confident in this situation that things will be different.

I have a echocardiogram on the 25th to investigate a heart murmur. I also have chest pain upon physical exertion. It seems that the cortef is making the chest pain worse. I truly hope that I don't have heart problems. I don't need more to worry about.

So if the cortef doesn't give me a heart attack, it will have been an improvement so far.

My ultimate goal is to regain the ability to exercise and benefit from it.

Storms are brewing outside. I like taking naps during storms. It is very comforting.

I just received word that my Aunt was in a car accident and broke some ribs. I am waiting for a call from my mom on details. I seem to be handling it better than I normally handle stress, which means that the drugs might be working.

More later.

Cortisol test results, etc.

I go my lab results back. My cortisol is "very low" again according to Dr. Weiss. He will call in my cortef tomorrow. I am very hopeful. A ray of hope is shining through the fog of some very intense fatigue. It has been very bad lately. I am dealing with some suicidal thoughts, which is unusual. I guess I'm getting tired of feeling bad with no end in sight. No worries. My love for friends and family keep me tethered doggedly to this mortal plane.

I will update again after I start the new meds.

Cortisol tests, adrenal fatigue, glandulars and a rant about being sick

I completed my saliva/urine sample on the 28th and sent it out yesterday. Once it gets to the lab, they will measure my cortisol levels and based on the results Dr.Weiss will decide whether or not to put me on low dose cortef. Dr. Teitlebaum, whose CFS protocol Dr. Weiss subscribes to, wrote an article on using low dose cortef to treat adrenal fatigue (a condition I was diagnosed with last year) that says that these saliva tests tend to be inaccurate. Despite this, the saliva/urine test I had done last March said that I had very low cortisol levels. In all honesty, I hope that they're low again because this means that there's a known treatment protocol and a solid reason behind my ongoing fatigue and weakness. If I come out normal, there's either something else wrong with me or the test was wrong. Either way, it makes things far more difficult than they should be.

For now, per doctors orders, I am taking over the counter stuff for my adrenal fatigue called Adrenal Stress End. It is adrenal cortex extract aka. glandulars from a company called Integrative Therapeutics. I had taken them for about six months or more before and saw improvement but ceased taking them because Dr. Wu (my naturopathic doctor) wanted to start me on some herbs and didn't want to overwhelm my system. I was okay for a month or so and then crashed. I always have so much going on in my life that sometimes it's hard to track the cause and effect of my ever changing treatment regime, but looking back perhaps going off the glandulars was not such a good idea.

Glandulars, by the way, are ground up and dried extracts of animal glandular tissue. My thyroid medicine, Nature-throid is a glandular because it is composed of dessicated pig thyroid. I also take calf thymus gland extract sublingually three times a day to control my viral symptoms, (it's called proboost and it works incredibly well). The glandular that I just started is adrenal extract from a cow, I think.

Dr. Teitlebaum is a proponent of glandulars, as is my doctor. Dr. Wu doesn't seem to be much of a fan, although they seemed to work and so I'll take them. The point is, they're kind of controversial. I read an article written by Dr. Weil (whose dismissal of adrenal fatigue is disapointing) saying that they're not proven to work and kind of dangerous. In cases like this, you have to be willing to try things, pay attention to how your own body receives the treatment and continue or discontinue based on that. Looking to multiple medical authority figures tends to be contradictory and confusing, but I do find that having more than one health care practitioner has been largely helpful.

I have to get moving on this whole wellness thing. I'm not happy one bit about my inability to exercise. I'm far too vain to allow my body to take on the doughy amorphous slump of a middle aged person stuck in a veal fattening pen, but that's certainly where I am headed if I continue on into my thirties sitting on my ass. I have no patience for this anymore. I was planning on starting school in September and now it's not looking good. I am tired all the time. It's an overwhelming desire to sleep that haunts me all day long. But that's not all. Maybe you have experienced this. It's that feeling that you get when you have exercised really hard and now you're ravenously hungry but you keep going, maybe because you're playing soccer or running a race for instance, and your muscles get very weak and very heavy (I think it's called 'hitting the wall'). Maybe you feel a little light headed too. In fact, your body is so desperate for rest and nourishment that even your thoughts are muddled. It's an all consuming exhaustion, but you know that after a nice meal and a glass of water, life will return to normalcy. In my case, that sense of heaviness, soreness, dehydration and exhaustion is what I am up against after one of my boyfriends families social events or a trip to the mall. Some days, I just wake up like that. And there is no meal or glass of water that will make this feeling go away. For now, it's just the way things are. Some days are better than others and these days, I have a good day from time to time (every so often, a good month or two). For that I am grateful, but I don't think it's too much to ask that I'd like to have some of my youth back before it's gone.

Thanks for reading this, if you've made it that far. I don't get a chance to explain this to folks very often. People sometimes tell me that I just need to tough it out, or do stuff anyway or to just try exercising (it would be all I do, if I could) and I'm usually too tired to defend myself. If you are one of those people, give me a break. I don't claim to know what your life is like, so do the same for me. When people patronize me by giving their bad advice, more than a mere annoyance, it exposes all the unspoken assumptions they harbor about the nature of my condition, about my motivations, my state of mind and my moral sturdiness just to name a few. Also, don't try to "joke" with me about how I'm making excuses. No one would lie about being tired for this long unless they were completely pathological. The patience with which I deal with people like this is a testament to my sanity. So don't insult me like that. It's not an excuse, it's not in my head. Don't tell me I'll be fine. I have a chronic illness. It may never go away. I am faced with that every day of life.

My apologies, dear readers, for my anger. But understand, I have been through hell and for this, I am misunderstood at every turn. Chronic fatigue syndrome is trivialized by the medical establishment and therefore, entire communities, families and friends alike. I intend on remedying this as soon as I get a fourth of my old gumption back. Trust me, I'll fight the good fight to get the word out about chronic illness and the people who silently suffer.

If you have read this far and listened with a modicum of empathy, you now understand better than most people in my life what it is that I'm going through. So when I seem cranky, distant, unavailable or unaccommodating some days, it's nothing personal. And if I am giving you my attention and positive energy, that's my gift to you. It may not seem like much, but it's all I've got. In fact, it's usually more than I've got... but I give it anyway.

Nature-throid and other things

The last two months have been hellacious. I had a resurgence of old symptoms which left me couch bound. Because I had nothing else to do, I got on the 'ol computer and started looking around for other people going through similar issues. Interestingly, I found more than moral support, I found answers...on Twitter! I started following dearthyroid and thyroidmary (Mary Shomon, thyroid patient advocate) which is how I found out that there had been a recent reformulation of my beloved life saving thyroid medication Armour. Apparently, I wasn't the only one who had gone hypo since the change. So I talked to my doctor asap and got a script for Nature-throid. It was hard to find a supplier but I eventually found success through drugstore.com. It arrived in the mail four days ago and each day has been a little easier. At this rate I will be back in yoga class by August. Yay. Although, I have to say that I'm really pissy about that whole reformulation thing. I lost two months of my life and had it not been for the online communities of people out there openly discussing these issues, I would have continued to be in the dark about it to this day. Who knows how many months I could have lost. I've been known to loose years and I don't have the time or patience to do that again. Sadly, there are other people out there who are still suffering from the change and are blaming it on themselves. It's a damn shame.

I think I'm going to start trying to take classes in September. That is going on the assumption that I am in a better state then than I am now. I'm much better, but I'm not yet in the clear. Walking from the doctor's office uphill to the car was tough. I'm thiry-one for chrisssake. But my adrenals are not happy, this I know. I have been feeling very hypoglycemic lately. Dr. Wu is pushing me to quit coffee again, but I'm not yet ready to bed ridden again, albiet temporarily. Coming off that stuff is not a joke for me. I am a bona-fide coffee addict.

Speaking of hypoglycemia, if I don't eat soon I am going to start attempting to eat inedible objects, like the couch. So I have to sign out here, which is disappointing because I wanted to talk about something cool that Dr. Wu told me today about the connection between thyroid, adrenals and the ovaries in Chinese medicine. Ah well, maybe later.

It's been a year

I can't believe it has been a year since I have posted here. I have been thinking about this blog since I left it a while back. A lot has changed but some has stayed the same. It seems appropriate (at least for me) that my last entry was a year ago almost exactly because it gives me a sense of how far I have come and what it is that still needs changing. Since I last posted I have come to grips with a lot of food allergies which did amazing things for my energy levels, weight and my skin break outs. I also started on Armour thyroid which has improved my mood most markedly.

Yet, I'm still easily fatigued and basic things tend to wipe me out quicker than they should. On a bad day, a trip to the grocery store is hard on me and if we end up there during rush hour, I am totaled. A vacation takes months to recover from. The past few days Vijay and I have been visiting with his family from India and my throat is getting sore and I can feel feverishness coming on.

On the other hand, I just have just enough energy now that I'm angry about my situation more so than sad or disenchanted. I'm pacing in my cage now. I am still not ready to go back to the school of my dreams, which has me disappointed, restless, frustrated and angry. I am 31 years old and no where near where I think I should be. I do everything I can to avoid talking about myself in social situations because my lack of achievement without the context of this bloody health crisis simply smacks of failure. This is on my mind constantly. I heard a Zen saying the other day: "The obstacle is the path." I am currently meditating on the immensity of this statement as it applies to my life. As my youth fades and I am forced to eat my big life expectations, there in the rubble perhaps I will find the material with which to build a paradigm for my new life. Taking the plunge will involve completely letting go of the expectations that I brought to this place. The expectations that continuously haunt and undermine me.

Despite the anger, the frustration and the sense of being trapped, I am still secretly a glass half full type of person. Every time I gain a fraction of the function I had before all of this, I accept it with voracious gratitude. I am continually stunned by the kindness and selflessness demonstrated by my partner for never acting like any of my limitations are a burden to his life. I am happy to have a new plan. Even if it too falls apart.

Speaking of a new plan, the doc. is having my cortisol levels checked again. I have to collect saliva samples and send them to a lab where they will measure the cortisol fluctuation through out the day. The last time, Dr. Weiss said that they were, "as low as you can get" which is bad. He also found me to be suffering from an autoimmune illness, hypothyroidism, very under active adrenals and viral infections (mono & HHV-6).

My most recent tests say that my viral levels and my thyroid levels as well as their antibodies are normal. After I find out about my current cortisol levels he may want to put me on low doses of cortisol because he thinks that the remainder of my ongoing fatigue is from adrenal issues. Hopefully getting the next step out of the way will assist in getting me even closer to normal, whatever normal is. Will I remember once I get there?

I'm going to close with my new goal. I haven't figured out yet how to do this. I realized the other day that I have been hiding the extent of my illness from much of my friends and family. The new goal is to start talking openly about the obstacles that I have come up against over the years. I have been so afraid that people will assume that I am making excuses or that I talk about being sick too much or that "it's all in my head" (which is the worst thing you can say to someone suffering from chronic illness, the runner up being that you're just making up excuses). I have accidently, unknowingly created a place where no one understands my situation entirely or what happens behind closed doors. No one (aside from my partner) sees the days of being bed ridden that stretch into months punctuated by moments where I summon enough energy to go out into the world and pretend to be well, only to go home and collapse again. The other day I was thinking, "who is this actress that I have become?" I have to start talking about this now or else for anyone anywhere experiencing similar obstacles and keeping it quiet, we are actively creating our own prisons for ourselves and each other. I think it's time to start taking responsibility when and where we can, when we have the energy to do it. No one else will be our advocates.

If I were to have a midlife crisis, I wouldn't notice.

In the "Collected Works" of Carl Jung, he says:

"Among my patients in the second half of life -- that is to say, over thirty-five -- there has not been one whose problem in the last resort was not that of finding a spiritual outlook on life. It is safe to say that every one of them fell ill because he had lost what the living religions of every age have given to their followers, and none of them has been really healed who did not regain his spiritual outlook."

Reaching from his experience as a therapist, Jung concluded that those who have entered midlife have long cultivated their social facade and are thus ready to shed it and move on to more probing questions of identity.

Steven Cope, in his book "Yoga and the Quest for True Self" refers to Jungs characterization of a midlife crisis by saying that, "hithero repressed and hidden aspects of self may seem to overwhelm the conscious self, initating a difficult period of disorganization of the personality."

Hmmm. Sounds farmilar.

I guess my midlife crisis started after graduating high school. So what next? I can hardly believe that my middle years have only to offer more of the same. It seems entirely redundant. So I can only conclude that, if Jung is correct, that I will either have a much more profound breakdown than most, or I will skip it entirely because I have already gotten it out of the way.

It is possible that the way that psychological symptoms manifest themselves in people is different due to a differing social climate. There is what some now refer to as a "quarter life crisis" which I experienced, but not before my "transitioning to college and out of my teenage years" life crisis. But let us not forget the "high school life crisis" the "Junor high school life crisis" or the "Help. I'm stuck in elementary school life crisis". (Yeah, so I've always been a little bit of the restless & angsty type. The establishment likes to call it ADHD, but I'm more apt to think I'm allergic to boring)

Maybe our society is just broken when it comes to some of the more fundamental needs of humans. By which I mean, our priorities are out of balance and thus, people are continually surprised when meeting our goals fail to bring a sense of spiritual and psychological saiety.

Which brings me to my new theory, that everyone's problem is that we are simply stuck in our left brains and that we'd all be a lot better off if we learned to meditate or, in Jill Bolte Taylor's case, have a stroke (she's from Terre Haute, Indiana by the way).

rambling on various things

It's been a while. Although I have been doing yoga almost daily, I seem to have hit a rough spot in the healing process and I can't seem to snap out of it. I have been so tired. Too tired to cook or clean. I even went three days without washing my hair! Going back home really threw me for a loop. It's not good for me to visit the immediate family, unfortunately. I haven't really been able to get a grip on the panic attacks since my return. Last night at about two a.m. I had a particularly nasty one. I have finally figured out what instigates them though.

But first a little history.

My panic attacks began as sleep walking episodes during a particularly bad fever that I had in second grade. I eventually stopped walking in my sleep, but instead I just wake with a start, drenched in sweat and trembling with a fear so intense that certainly a less logical version of myself (perhaps a child?) could not be faulted for attempting to run. The one thing that I have noticed about my current panic attacks are that I wake up very, very hot. So it was brought to my attention by some friends that perhaps state of being hot, being similar to that of the fever, instigates the panic. My naturopath suggested that if my body was conditioned to associate high body temperature with a life threatening situation (the really high fever) that maybe the fight or flight response actually makes sense.

Ah-ha!

Unfortunately, I can't think of how not to overheat at night. When my partner sleeps he turns into a veritable space heater and the heat that he generates gets trapped under the covers, until BAM off I go into fear induced lunacy. If part of my goal is to heal my adrenal glands, these night terrors have got to stop. It can't be good to have my poor adrenals pumping out all of those stress hormones with such frequency. The next day I feel flustered and drained and my muscles weak and wobbly. Plus, it interrupts my sleep. It may be necessary for us to have separate covers at night. It's something to try anyway.

So I have another acupuncture appointment tomorrow and a yoga class. We went to yoga this morning as well and in the afternoon we went to an event put on by our local coop. A band called Chopteeth played and the coop served us delicious Mediterranean cuisine. We didn't stay long because the boy had to go back and do homework, but the short amount of time that I spent there made me realize how much enjoyment there is to be had to be IN music while listening to it. This is compared to sticking a CD into the CD player and listening to it the with the bass turned up, which is no comparison. To actually have the beat of the drum and the sounds from the band moving through you is a deeply moving feeling. Just so long as it's good music, which today it was.

I am still having a lot of problems with a family member whose drug abuse has basically shattered the ability of my family to relate to one another in a healthy manner. She overdoses on a regular basis and recently one of her friends died of a drug overdose. Another friend of hers came over and passed out and they were unable to arouse her and they had to call an ambulance. She doesn't seem to be waking up from this and appears as if she never will. I know that life is struggle but sometimes I wonder if I will ever get a break. So I have decided to start going to Alanon meetings. There is one that meets on Thursdays at eight p.m. in my neighborhood. I am little nervous as I don't know what to expect. More hypervigilant, guilt ridden, hand wringing, 'save the world' types, like myself? Perhaps. Maybe I'll get something out of it. Hopefully, support and good advice, as it seems like people who have not been in my particular situation grow very tired of how things never get better and I continue to care, as if I can turn a switch in my brain to become as detached and uncaring as the rest of the world seems to be. Maybe I'll meet someone who has come up with the perfect ratio of detachment to caring, so that I don't have to shut down entirely in order to self preserve. Maybe I'll just get involved with more people who are in pain that I can't help.  Maybe none of those things. Maybe all of them. 

And finally, I have been thinking a lot about how annonymous I want to be with this blog. After some deliberation,  I have decided not to use names of people at all. I don't like censoring myself and I have a history of that in blogging, for fear of the wrong person reading my posts. 

I am relearning how to breath, by the way. Breath transforms consciousness. I am taking small steps towards wellness and things are going to get better. 

My focus is slipping now, so I should go. 

Atheist praying

Yesterday was more of the same. Lots of weakness. I tried to take a walk but didn't make it very far before tiring. My throat is still sore even today. Tonight I will do a castor oil pack, which helps the liver and lymphatic system clear toxins from the body. Or so I have heard. Castor oil packs always make my stomach growl like crazy, so I know something is happening. And I usually feel pretty good afterwards. 

The boyfriend is baking yams for me as we speak. I just ate a bowl of organic strawberries. Earlier I had a shrimp, radish, carrot, romaine and avocado salad with basil dressing and freshly made organic mint lemon aid. For breakfast, a boiled egg and gluten free toast and butter and coffee. Also, lots and lots of water. I know my metabolism is on the fritz because in my early twenties a diet like this would have had me as skinny as a rail. 

I had another acupuncture session tonight. I tried to visualize healing during my session. It is thought that perhaps the mind can heal the body and I think it's probably true. If stress causes illness and negative thoughts cause stress, then we truly can influence the state of our bodies by the thoughts that we have. It's up to us which way those thoughts go and if we are practiced in negativity, it takes a certain level of discipline to attempt to reign in old patterns and create new ones. I have come light years in this respect over the past year alone, but I still have light years to go. 

I had the hubby call a local place here in town and signed us up for free introductory yoga sessions on Monday and Sunday. Hopefully the yoga won't be too much for me. It's introductory yoga and I used to be relatively advanced before I got sick, so I remember the intro yoga to be very gentle. Unfortunately, my perspective has changed a little, so I'm somewhat nervous. I should probably tell the yoga instructor about my situation, just in case I have to stop in the middle of things. Anyway, if we like it there we will get memberships and start doing yoga on a regular basis. This will be my first attempt at becoming physically active again. 

My history professor from college sent me a book recently titled "The Human Condition" by Thomas Keating. Today I received from him the guidelines for a centering prayer that he meant to send along with the book. 

The centering prayer is very simple. 

1.) Choose a sacred word (or simple attention to your breath) as the symbol of your intention to consent to God's (my insert: or the Universe's) presence and action within.

2.) Sitting comfortably with eyes closed, settle briefly, then silently introduce the sacred word (or attention to breath) as the symbol of your consent to God's (or the Universe's) presence and action within. 

3.) When you become aware of thoughts, return ever so gently to the sacred word (or attention to breath)

4.) At the end of the prayer period, remain in silence with eyes closed for a couple of minutes.

The paper recommends at least twenty minutes but to do what you can, or rather, "pray as you can, not as you can't". 

I think there is something to be said for an atheist praying. There are places in the brain that light up while in deep prayer or meditation. These centers, or so I have read, are the same area in the brain that registers the capacity to feel pleasure. You can cultivate these centers and thus increase your capacity for joy. Interesting, no? Scientifically, spiritually or otherwise. 

Okay, time to eat yams. 

Bad past few days

The past few days have been hard. Yesterday, I had fits of nausea and weakness. I had trouble making it up the stairs to our apartment. Today I feel tired and feverish. My throat is sore, and my lymph nodes are swollen. I'm just terribly exhausted.

I had an acupuncture appointment today which seemed to unleash a lot of pent up anguish. Afterwards, I even fell asleep on the table.

Despite the fact that I'm not feeling well, I was able to make a pretty good meal this evening. The boyfriend and I went to the store, and I bought a whole chicken, organic and free range of course. I stuffed it with garlic, hot sauce, carrots, and onions and cooked it for an hour and a half. It turned out fabulous. We also had an organic herb salad with tomatoes and cucumber. Sometimes when I feel like this, it is so hard to insist on eating well when that means having to cut, clean, prepare, and cook so many things!

I took all my nightly medications, and now I'm feeling woozy. There's just so much stuff that it makes me sort of ill. I'll try and stay awake for a while so that I can digest them before I go to bed.

Tonight, my body is weak, but my heart is restless. There's so much I want to do that I cannot. I wonder how long it will be before I can start doing all the things I dream about daily. Of course I dream about it at night, too. I dream about being younger and running and being free. Sometimes, I dream about boundless energy and creativity and joy, and then I wake up and I realize I'm still sick.

The lighting outside is crashing, and it is sort of comforting.

My neice wants to visit soon. She says she'd like to see the ocean, and I have promised her that we will go. My goal is to be well enough in two months to be able to have her visit. I just started to take my new thyroid stuff. Perhaps in a few months it will have taken effect. That would be ideal.

It's nine thirty. My goal is to be in bed by ten thirty. According to the CFS protocol, I need to be getting 9–10 hours of sleep per night. My problem is that even if I go to bed early, I usually awake around midnight or one with my heart racing and terror surging through my veins. I don't know where it comes from. I have found that taking liquid magnesium before bed has lessened the effects of the night terrors. Another thing that has helped some is a dose of 200 mg of 5-HTP. This has also helped a lot with depression, which is a really big deal. Before I was using coffee as my antidepressant and since then have been able to reduce my coffee consumption by about half.

My words are coming out disconnected and awkward. But the times when expressing myself comes easily are also the times when I'm feeling well. During those times it is hard to remember what it is like to feel really truly sick. I have to allow myself to write when I feel clumsy and thick headed so that I can remember how far I have come when it begins to subside. In the past I have withdrawn when the words don't look and sound like they're supposed to. I guess this is the designated space for my clumsy brain to flail and attempt to articulate itself on its own terms.

Thank you universe for teaching me about humility.

I must feel entitled to nothing and work for everything.

Amen.

Do you have Chronic Fatigue Syndrome?

I am seeing a doctor who has worked very closely with Dr. Teitlebaum and is trained extensively in his unique approach to issues of Chronic Fatigue. This is an interview with Dr. T, an explanation of what CFS is and the overview of the basic protocol under which I am currently being treated.

Listen to the interview.

Towards the end, Dr. T give a general overview of how hypothyroidism fits into the cycle of CFS and Fibromyalgia, which I think is a very important connection. These medical issues may be separate diagnostic categories in some physicians manual, but in the interconnected web of the body, each disordered system gives rise to another.

My first Chronic Fatigue post

I want this blog to be a learning forum, for myself and for whomever happens to find it. My short term goals are to learn to articulate the struggles that I have experienced thus far in a way for other people to understand and also to give those struggles a physiological framework. For within the framework of physiology, we remove the moral stigma of fatigue and begin fleshing out a roadmap for self-empowerment and recovery.

So, the ultimate goal, my dear readers – what I want for myself and for other sufferers – is to give meaning to this illness in a logical light. Who are these people like myself trudging this weary path of existence? How do we make meaning of it? And how do we find acceptance when there is so much distrust and misunderstanding surrounding this seemingly mysterious disease? With better understanding of the origins and degenerative path of body dis-ease, what options do we have with the resources that we have access to? And maybe most importantly, how can we create a non-judgemental environment of support and empathy for one another along the way? Maybe you can help me do this, for I certainly cannot do it alone.