Wednesday, March 25, 2009

Updates

I've been feeling a bit guilty for not blogging much lately as well for the emails I have yet to send. I haven't been able to muster up the mental energy to write. Also, I've felt too depressed from the Valcyte and I just don't want to blog about depression anymore.

Today though, I've been given a reprieve from the Valcyte depression. It's nice.

I also see a little glimmer of acceptance on the horizon. So I have what my doctor calls "a profound case of CFS." It doesn't mean I can't have a life that I enjoy.

I've been doing a lot of thinking since my talk with my CFIDS doctor yesterday. I cried after the conversation and felt the heaviness of grief, sadness, and self pity sitting on my shoulders. I'm tired of that trio. I really am. While I think it's important to be with the feelings, at some point I have to say enough already. I'm also fed up with all the ways I beat myself up about all the ways I fail people because of this illness. I'm tired of wasting energy with these thoughts.

Being hit with this and having my external life taken away takes awhile to get used to. I've found there are no books on the emotional impact of having this illness but that's another topic.

I had a phone consult with my doctor. I'm 66 days into taking Valcyte. Last week I had so much fatigue that I had to cancel lunch with my sister. She was not only coming over but bringing lunch leaving me with nothing to do but sit and talk but I was too fatigued for that. I've also been having increased muscle pain. Not just achiness but pain along with cramp like sensations in the backs of my calves. The muscle pain was fairly intense. My doctor didn't know if it was from the Valcyte side effects, the cfids itself, or that the Valcyte is working on something. There are simply no answers. I won't know anything for six months.

I asked again what he thought the cause was and this time he said mitochondrial dysfunction. Prior to this his answers have varied from brain inflammation due to infections (bacterial, viral), toxins (mold). But this was the first time we've talked about the mitochondria. I'm aware of Dr. Myhill's recently published article. My doctor said some people have a chronic viral infection that damages the mitochondria-treat that and things improve. Others, have a hit and run infection that leave the mitochondria semi permanently damaged. He said the only way to fix that is "through stem cell therapy which costs $15,000 and you have to go to Mexico." I don't believe that's the only answer but who knows.

I think and fear that I fall into the latter category of a hit and run infection. My RNASE L was normal but the quantification was somewhat high. My NK test was normal (although it was run through Quest Labs which just reports a number and doesn't provide a panel. Quest Labs is good for testing for a few things just not NK function).

This is why I cried yesterday. If it's a hit and run infection, I have permanent damage to the mitochondria which is the most important part of the cell in terms of energy production. Also, a majority of mitochondria reside in the heart muscle which oftentimes leads to heart failure secondary to mitochondria dysfunction. Dr. Cheney believes that cfs is a way the body prevents the heart from failing.

So I turned my research efforts toward understanding mitochondria dysfunction. I spent a little time studying it today. The many supplements I took last year in an attempt to treat this failed but I was also living in a moldy toxic environment, hadn't treated lyme and babesia, and hadn't treated viruses. I started back on d-ribose (5 grams 3x daily) hoping this will ease some of the muscle pain and achiness.

What I was confronted with after talking to the doctor yesterday was the very real possibility that I might not get much better than this and maybe the only thing I could do was prevent myself from becoming bedbound. My true belief is I will get more functioning back but maybe not as much as I'd hoped.

I'm trying to come up with some ideas for how to live a life I'll enjoy regardless. I used to do stained glass many years ago. I'm finding myself really interested in starting that back up again. To do that I would need to take a class and get some new supplies. To take a class I need a little bit more energy.

I also need to figure out a way to get licensed or let it go completely. I may need to let it go because the process of getting licensed is quite stressful and takes a lot of energy. It's just that I was so close.

In the meantime I have to figure out how to get rid of a wasp problem that is preventing me from being able to sit out on the back porch and read. I swear these wasps are gunning for me. Everytime I appear they show up like bullies sending me scrambling to get back inside (which is hard to do when one doesn't have energy). They are building two nests right near the door. Today I thought I would fool them by taking out the garbage by going out the front door instead of the back. It didn't work though.

I think it's time that I claimed my sense of self back from this illness.

Friday, March 20, 2009

Taken Down a Notch

I think the Valcyte has taken me down a notch after 60 days now. For some reason I erroneously thought that because I made it through 8 weeks with some physical effects that somehow I'd escaped.

The past couple days I feel like my body has down shifted into first gear. I'm fatigued and kind of weak. My muscles, especially my back, are incredibly achey. Surprisingly so. I also feel a sort of apathy. The apathy feels almost protective, as if its a way to conserve energy.

At the same time, I've having more trouble sleeping. I've read these are all sort of typical experiences of Valcyte. They are listed as side effects but could also be signs the Valcyte is working.

Lately I've been thinking about how this illness really forces one to redefine oneself on every level. For me it's a slow process because first I had to get out of denial about how serious this is. While I know it at one level, on another level I like to tell myself stories that maybe I can fix this somehow. I do believe I can make myself "weller" but I don't think this is curable. I still remember the sense of relief I felt when the rheumatologist said "what you have is viral" (I thought-oh, good because that means it will go away), "that is very serious and can be very debilitating and is called something like chronic fatigue although that is a horrible name for this (it still didn't sink in because I thought 'oh good it's chronic fatigue-easy to fix with some rest'). He could tell I didn't get it so he continued "it's like HIV but it's not or Hepatitis C but it's not" (I felt puzzled at this point thinking 'but those are serious illness/diseases'). On another level I knew though because I asked him what my quality of life would be like. That's when the room became very still and he looked right into my eyes and said quietly, "I don't know." That's when a wave of anxiety and fear washed over me.

If I get the energy I might go through the various sites I visit and write down all the tips people have written about being on Valcyte. That's something that would have been really helpful to me. My experience so far is that it's been both not anywhere near as bad as I expected but at the same time worse that what I thought.

Wednesday, March 11, 2009

Fifty Two Days

Today is the 52nd day on Valcyte. It's been a rough ride but I think I might be having improvements. Since Saturday I've been able to leave the house for at 2-4 hours at a time except for Monday.

Today I shouldn't have left the house because I was feeling really achey and really fatigued. When I was first getting sick we went to visit my dad on my birthday. I was so overcome with fatigue that at one point I just laid down on the patio outside and slept for hours. I knew something was wrong but thought it would be remedied with rest and a good diet.

I figure if I can at least do short updates, it's better than nothing at all. The depression has been so bad I've just been struggling to get through the day. Luckily I've had a nice break from the depression as well (it's there in the background but not overwhelming). I'm aware that it's Valcyte induced depression-hopefully for a good reason.

Friday, March 6, 2009

Thank Goodness for Poetry

Oceans by Juan Ramón Jiménez translated by Robert Bly in The Soul Is Here for Its Own
Joy (HarperCollins publishers, 1995) p. 246.).


I have a feeling that my boat
has struck, down there in the depths,
against a great thing.

And nothing
happens! Nothing ... Silence ... Waves....

—Nothing happens? Or has everything happened,
and are we standing now, quietly, in the new life?

Is It Worth It???

I committed to writing down my experience with CFIDS and then with Valcyte. I really wish I were in a different state of mind. It sounds like I'm always depressed. Although it's true lately (since being on Valcyte) I'm not always depressed.

The question has come up for me lately about whether or not it's worth it for me to continue on with Valcyte. I won't make the decision without the help of my doctor. Each day has become an agonizing struggle to make it through the crippling depression that has occurred since starting Valcyte. This is an entirely different ballgame. Tuesday I was reading through news stories and came across one about an organization called Final Exit which is a hastened death network for people who suffer from incurable illnesses. Apparently a couple people in the organization have been charged with a crime. I found myself going to their website to look them up. Then I found myself in tears when I realized they send people to be with you at the time of death. I find it ironic that this illness is so isolating but that I could invite people to my death if I wanted to.

That night I had a dream. I've been having lots of dreams with my mom in them. Nightly in fact. That night I dreamt I was trying out two different bicycles. I was trying to decide between the two. For some reason I couldn't purchase them that day but kept going back to look at them. I really liked the bikes. The day came where I had the money to purchase one of the bikes. I was checking out. While I was checking out I realized my mom was standing right next to me waiting for me to check out.

I know that depression can be a side effect of Valcyte. I keep telling myself that maybe it's working on a couple viruses. HHV 6 is associated with depression. Apparently one of the proteins produced by it (?) can cause depression. It's not fun. And I'm only 47 days into it. I have 123 days left on it.

But I have to ask myself if I'm crying at the philosophy of organizations like Final Exit-is this worth it?

Physically I'm having some improvement. Not much but there is some. I have some GI symptoms now that I didn't' have before but physically I find Valcyte not bad at all. In fact, the herx I felt from antibiotics was worse than this. It's the mental/emotional part that I can barely take. I manage to survive minute by minute sometimes.

And then there's God. I've been praying every day for some peace or some relief or to feel God's presence. Silence. I don't get it. Not that I'm entitled to any sense of peace or anything for that matter but I just hoped for something.

I'll continue to hang in there...