Friday, August 28, 2009

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.





Monday, August 24, 2009

Low-Dose Hydrocortisone for Treatment of Chronic Fatigue Syndrome

My mom brought this article to my attention:


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.

Tuesday, August 18, 2009

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.

Monday, August 17, 2009

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.




Saturday, August 1, 2009

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.