Sunday, July 18, 2010

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.

Tuesday, April 6, 2010

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.


Wednesday, October 28, 2009

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.

Tuesday, October 20, 2009

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.

Sunday, September 6, 2009

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!

Wednesday, September 2, 2009

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?

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.