Saturday, January 31, 2009

52 Pills

I'm halfway through the bottle now at day 13. I'm still not sure what to think. It seems that the most consistently effected thing is my mood and my thoughts. I have body aches here and there in addition to increased fatigue but it's not the horrible reaction I've read so much about.

I hope it doesn't meant I won't be a responder. It will be interesting to see what happens in the next few weeks.

It seems that the drug stirs up the neurons though, I've been having some interesting memories. I'll find that I'm caught up in memories that I haven't thought of in years. One particular memory that has been haunting me this week is the day my mom died. Every awful detail of what happened after I arrived back home that day has always stuck with me. Luckily those memories have faded into the background with time. But this past week there have been a couple times when it's as if I'm having a flashback of my car hurtling down the freeway at speeds reaching over 100 miles per hour in the desperate hope that I would reach home by before she died. I wanted the chance to say goodbye to her. By the time I arrived she was in a coma but alive. I remember being behind the wheel weaving in and out of traffic, driving like a maniac from SF to Pleasanton where she was. I remember at one point after I'd almost driven off the freeway having a strong sense that if I didn't slow down I would get into an accident and in doing so would be robbed of the chance to see her one more time. That thought slowed me down enough to keep the car under control.

Then last night I was swept up in other memories that escape me at the moment. I've also been having some very strange dreams. This morning I kept dreaming that I'd hit my head and knew I needed an MRI. I kept showing up at a liquor store trying to order my MRI. Clearly I need to have my head examined.

I don't like the mood symptoms. I started reading Rilke again. This time I was reading through Rilke's Letter to a Young Poet. I found this entry:

Perhaps everything terrible is in its deepest being something helpless that wants help from us.

So you must not be frightened, dear Mr. Kappus, if a sadness rises up before you larger than any you have ever seen; if a restiveness, like light and cloud-shadows, passes over your hands and over all you do. You must think that something is happening with you, that life has not forgotten you, that it holds you in its hand; it will not let you fall. Why do you want to shut out any agitation, any pain, any melancholy, since you really do not know what these states are working upon you?....If there is anything morbid in your processes just remember that sickness is the means by which an organism frees itself of foreign matter; so one must just help it to be sick, to have its whole sickness and break out with it, for that is its progress.

Monday, January 26, 2009

One Week

I made it through the first week. In reality it's going to get much tougher but one of my strengths is a sense of determination and perseverance.

Yesterday as I described yesterday I had the awful anxiety like sensation which was followed by pretty severe muscle aches last night. It was bearable.

Today I've experienced a deepening sense of fatigue but it's been a peaceful fatigue rather than an agitated one.

I made it out for a 12 minute slow walk absolutely delighting in the discovery of a beautiful flower or feeling moved by a stranger's sincere smile. It's the small things that give me a sense of joy. Because my pace is so slow and my fatigue so deep I was happy to stop and look at the beautiful yellow dahlia, or watch with a sense of joy at a hummingbird drinking the nectar of a flower.

I got home and felt as if I'd run six miles. I got in bed and read a bit but found it difficult to concentrate. I was so tired I finally let my eyes close. I heard the phone ring in the other room and from some far away place in my mind I thought I should get up and get that but couldn't. And I didn't care.

I spoke with my SSDI attorney today to give him my new address and let him know about Dr. Kliman's death. I asked if there were any way to speed up getting a trial date. He said there's a new law called the compassionate law that allows one to request a speedier court date but the judge who oversees that part is "bad" so he only wants to send "slam dunk" cases to that judge.

It's a crazy system. Absolutely crazy. This is the first time since I've been 16 years old where I have no income. Whenever I start I worry about it I push it away. Being on Valcyte with an illness like CFIDS is similar to being on chemotherapy. I have to avoid stress/worry, and germs. I can't be around anyone who is sick or getting sick. Rest is also a number one priority.

I do think everything will work out okay. It always has in the past. I just have to relax into that knowledge.

My doctor emailed me with the results of my CBC and CMP. Everything "looks perfectly normal" so I will continue on with the Valcyte.

Sunday, January 25, 2009

Endure



That's the word that comes to mind today as I experience another episode similar to what I did on Tuesday.

I can't find words to describe it. It's like I have all the signs of being on the verge of a panic attack only I feel very removed and far away from everything. Add in a little nausea.

I would like to be able to find the words to describe this experience but my brain feels far away. I feel almost outside my body and can't find anyway to feel grounded.

I have a general sense of feeling unwell.

The only thing I can do is endure this experience and trust it will pass.

Yesterday I spoke to someone who is doing their dissertation on CFIDS. He attended the same school I did in the same program. There was one point where I was described what it was like to give up my practice and I could barely contain my tears. This deep sense of sadness welled up in me. I'm glad to participate in the study but I have to admit it was painful to be talking to someone just embarking on the dissertation journey as full of hope and promise that I was a few years ago.

I'm trying my hardest to endure this journey. I don't like it one bit though. Hopefully it will pay off.

Friday, January 23, 2009

CFIDS News: Myhill et al paper on Mitchondrial Dysfunction in CFS

Rich VanKonynen,PhD who is responsible for the development of a simplified methylation protocol (a relatively new treatment that came out in the past two years or so) for CFIDS thinks the following article represents a major breakthrough in understanding CFIDS.

Dr. Sarah Myhill and coauthors have just published a paper on
mitochondrial dysfunction in CFS. They found that there is mito
dysfunction in CFS, and that the degree of this dysfunction is
correlated with the degree of disability of people with CFIDS. A pdf of the paper
is available here free:

http://www.ijcem.com/files/IJCEM812001.pdf

In Rich's opinion, this is a landmark development in CFS research. It
shows that the fatigue in CFS is traceable to problems in the basic
powerplants of the cells of the body. This should draw the attention
of the CFS research community to the fundamental biochemistry of
metabolism, and it should also be a powerful bulwark against the
wrongheaded view that CFS is a psychiatric disorder, which is
particularly dominant in the UK.

The next step is to figure out what is causing the mitochondria dysfunction and there are competing theories about this.

Luckily, the top CFIDS researchers in the field along with top LLMD's are meeting at least annually as part of the Sonoma Working Group to discuss issues like this.

I skimmed the paper and it just describes the problem. I have no understanding of biochemistry it doesn't make a lot of sense to me.

The only problem is how do you treat this???? It's kind of like saying "well we know the reason you are paralyzed is because your neck is broken."

Friday

Today is my fifth day. My sense of time has shifts depending on the hour. Sometimes all I want is for the next six months to pass so I know what the outcome of this experiment with Valcyte will yield. Time slows waayyyy down when I get in that frame of mind. At other times I'm gritting my teeth to in order to bear the moment. Mostly I've been trying to remain in the present and just be with whatever is happening.

My days are taking on a new routine. I wake up usually aware that some strong force is in my body. I lay in bed for awhile because I'm not feeling all that well. I'm also not sleeping well which isn't a good thing in many respects. I get up and prepare to take Valcyte. I can't swallow pills so I have to crush it but the powder can cause cancer if it comes in contact with skin so I put on gloves, protective eyewear, and a mask so I can't breath in any powder. This was recommended by a couple pharmacists as well as Roche itself. It's crazy because I put on all this protective gear, crush the two pills, pour it into a bowl with applesauce, take all the protective gear off and eat the applesauce. I'm taking a chance crushing the pills because it increases the risk of side effects but the alternative is to choke. Luckily my CFIDS doctor is closely monitoring my bloodwork. I have a standing order to have my blood drawn once a week for the next six months.

After I eat the applesauce I eat some cereal, take my thryroid medication, my hydrocortisone, and the supplements for the methylation protocol. Then I wash the dishes from the night before and do some things around the house.

A couple hours later I make myself a protein shake with more supplements: vitamin C powder to boost my immune system, Hawthorne Extract for my heart, Holy Basil for mood, Dr. Wilson's Adrenal Support for my fatigued adrenal glands, Calcium/Magnesium, Vitamin D drops, and a few other things that I've forgotten about. Then I wash the blender.

I go lay down and eithe meditate or do relaxation exercises. I lay in bed for awhile. I've noticed I have more fatigue since taking Valcyte. Then I do some reading for my class.

I make my green drink which takes awhile. Then I go lay down again and try to read some Jungian stuff. Nothing stays in my head.

Today I went to have my blood drawn again. Each week I'll have a CBC (complete blood count differentiated) and a CMP (complete metabolica panel to test for liver funtion, kidney function, blood sugar, etc...). The wait was long today. I sat in the lab trying to control alternating feelings of slight anxiety and feeling somewhat faint/woozy. I was sitting in the chair and looking down at the stained rug, surrounded by people and for a moment had this horrible feeling of oh my god-look at what my life has become. I went from a promising career in my field to sitting in a lab struggling not to pass out barely able to drive the 1.5 miles to the lab in a car that barely works. It was not a pretty moment. Usually I have a pretty good attitude but this one moment was bad. I think it might be compounded by the Valcyte.

Luckily the woman who draws my blood is quick. I've noticed something strange though. When blood is taken out of my left arm it flows nicely but when it's taken out of my right arm it's much more slow, sometimes the technician has to tap the vein and encourage the blood to come out. I hate it when that happens. As the lab tech is saying "come on, you can do it, don't give up now" I start to silently panick and begin whispering to myself "don't faint, do NOT pass out, think of something else..."

It's unsettling how one's life can change so drastically even with the best laid plans...

The Man Made of Rain



Many lifetimes ago, it seems, my dissertation advisor recommended a book. He was in the midst of reading it and loved it.

It's a poem by Brandon Kennelly. He experienced a series of visions following open heart surgery (a quadruple bypass). He writes:

I saw a man made of rain. He was actually raining, all his parts were raining slant-wise. His talk was genial, light and authoritative, a language of irresistible invitation to follow him where he decided to go, or was compelled by his own inner forces to go...The man made of rain would not leave me until I let his presence flow in the best and only poem I could write for him...

This book or poem is a homage to the presence of the man of rain.

My advisor is a poet, scholar, author, and travels around the world to lecture. He is also a Jungian psychologist but no longer practices and is in touch with the world beyond this one. Whenever he recommends a book, I promptly buy and read it.

I love this poem. It's soothing, hopeful and written by a man who lingered in the shadow between life and death.

This is the first chapter.

***

What?

'What is my body?' I asked the man made of rain.
'A temple,' he said,'and the shadow thrown
by the temple, dreamfield, painbag, lovescene,
hatestage, miracle jungle under the skin.

Cut it open. Pardon the apparition.'

'What is my blood?' I dared then.
'Her pain is birthing you and me,
the slow transfiguration of pain
into knowing what it means to be

climbing the hill of blood, trawling the poisoned sea.'

'Where have I been when they say I've returned?'
'Where beginning and end
combine to make a picture, compose a sound
reminding you that love is a singing wound

and I could be your friend.'

Wednesday, January 21, 2009

Day Three

A much better day than yesterday. Thank goodness. I really appreciate everyone's help yesterday. I needed it. Every comment helped. The experience reminds me of something a friends said to me a long time ago. She was very wise and deeply spiritual. We were talking about prayer, faith, and the existence of God. She said she not only feels God's presence but that God always answers her prayers. I have always been someone who searches, questions, and loves this sort of discussion so I asked her how God answers her. She said she says her prayer and allows herself to hear God's answer through other people or beings. That always stuck with me.

If I feel moved to say something to someone or comment on something I usually say it no matter how insignificant it might seem to be at the time. It might have great significance to the person receiving it or not at all. I felt that I was receiving guidance from people.

The thought of stopping Valcyte yesterday for a few days didn't feel right to me. I decided to take it last night to see what happened. No anxiety. Whew! I even slept okay-not great but much better than the night before. I took 1/2 of generic flexerill in the hopes it would help my muscle cramps. I think it also helped me sleep. I did some reading on various message boards about people's experience on Valcyte and saw that one woman felt that eating when she took Valcayte seemed to help the anxiety. I doubt that will help viral die off (Note: I find it interesting that each defined subgroup of CFS uses different language to describe a similar phenomenon. "Lymies" use the word "herx", "moldies" use the word "intensification reaction," and "virus people" use "viral die off." Since I suffer from all three I'll use either herx or die off.)

This morning I woke up a bit discombobulated I think from the Valcyte and everything. I was a little frightened about what would happen today but decided to think of it as an adventure at home and took another dose of Valcyte. I also started taking a supplement called Gaba Calm. I had a pretty good. I meditated, did relaxation exercises using my ipod, and felt generally pretty peaceful with some exceptions and intermittant nausea. I'm drinking a lot of water and I'm also drinking a green juice drink made up of an apple, celery, cucumber, spinach, the juice of a lemon and a lime,and ginger. It's pretty tasty.

While doing some internet searching I remembered a dream I had over the summer about a pill that was made up of an antiviral, antibacterial, and L-Theanine. It was clear in my dream that this was the pill I needed for treatment. I looked up L-Theanine and it is a calming agent so I'm going to buy some.

The only moment where I felt quite anxious was while on the way to get my blood drawn and had to wait at a long stop light. I started to worry I was going to pass out. I couldn't tell if I was actually lightheaded or anxious. Regardless, the anxiety thoughts started to creep in: "what if I pass out in the car? what if it happens in the middle of the intersection? or oh, no, I'm on Valcyte now so I'll probably faint." So I distracted myself. I read somewhere that if it's dysautonomia that's causing the lightheadedness that holding my abdomen in or jiggling my legs can help with the blood pooling.

I'm behind on emails and other life things.

Last night we opened late Christmas gifts that had arrived from Daphne's mom. They were awesome. I got a beautifully made hummingbird nester. It has instructions on where to put it and when so that hummingbirds will make a nest. It says to put it out on March 1st so that's what I'll do. I love it.

I've got my determination back to beat this thing into submission/remission. I'm also doing visualizations.

Tuesday, January 20, 2009

Day Two

I hardly slept last night so already my day was off to a bad start. About 90 minutes after taking my dose of Valcyte I began to experience horrible anxiety. I really can't describe what it was like. I couldn't relax and my calf muscle felt like it did when my back went out prior to needing an urgent back surgery. Of course, those thoughts didn't help ease my anxiety.

I'd been invited to celebrate a friends birthday while watching Obama's inagauration something I'd been looking forward to for awhile (seeing my friends and the inagauration). My anxiety eased up enough to go for a walk. One would think that going for a walk would be just what I should do to manage the anxiety but it wasn't like that. I was a bit dizzy and lightheaded at times along with the anxiety and was having increased brain fog as well so I didn't trust myself to go outdoors and not pass out.

I went out for a 10 minute walk thankful that I wasn't feeling as bad. I got home to two messages from one of my friends. The first was letting me know where and when to meet them. The second was canceling altogether. Then I got an email saying their phone was down and canceling again. I'm so confused but I'm remembering feelings of high school and being dissed. I'm bummed about it but trying not to dwell. I like seeing people who knew me when I was well. Somehow this seems to bring home the point that I'm ill.

I also got a response from my doctor's office. I'd sent them an email describing what occurred today. My CFIDS doctor says to stop the Valcyte, restart it Sunday and let them know how I'm doing on Monday. Although it's probably a good idea to restart since I had such an intense reaction, part of me wants to just power through this and get it over with. I don't want any more delays. But today was pretty horrible so I'll follow his instructions.

Sometimes this journey feels so lonely.

Monday, January 19, 2009

Day One-Valcyte

I took my first dose of Valcyte (900mg) today at 11:46. A couple hours later I began to feel the side effects of it-some nausea, wooziness at times, increased fatigue. Tonight I feel an increase in muscle aches and increased fatigue.

Prior to bedtime I'll take my second 900mg dose. Following Dr. Montoya's protocol, I'll stay at the 1800mg dosing for 21 days and then reduce the dose to 900mg for the rest of the six months.

I did a lot of thinking about this and a lot of research. It feels like one of those things that I have to try. I don't know what the outcome will be. Even though every doctor I have seen so far has said to go on Valcyte there has been various reasons why I've delayed starting it. It's a good thing I didn't start until getting out of that moldy place though.

Today we went for a walk on a trail about 10 minutes from here. Because we moved it's much more accessible. We walked very, very slowly for about 15 minutes. I used to go running there for years. It was nice to be back. While walking on the trail I kept trying visualizing what my body used to feel like when it was healthy. I was grateful for being able to go out at all. It was difficult but worth it.

We're getting into more meaty subjects in my self help class which is nice. I was a little worried.

My cognitive functioning may decline for a bit while on Valcyte.

I pray this works. I have a feeling it's going to be a roller coaster.

Saturday, January 17, 2009

Robins, Deer, and Door Number 2

I'm behind in blogging. It's been an interesting 10 days or so. I hesitate to say this-it's like tempting fate, but I don't feel that crushing fatigue that I did after moving in here.

I would say that I'm back to where I was prior to the move plus 5-10%. It's also been very sunny and uncharacteristically warm. I'm noticing that my illness fluctuates with the weather. For an interesting read on barometric pressure and its influence on those with chronic illness go to this link: http://www.lemon-aideonline.com/ (see barometric pressure). It's quite fascinating. People who have suffered from mold poisoning also find they respond to fluctuations in weather. The theory being that changes in barometric pressure allows mold spores and mycotoxins to be released into the air.

On Weds I decided to go for a drive to the local cemetery. It's very beautiful. Instead of feeling peaceful I began to get filled with anxiety as I navigated an unfamiliar road that seemed to be leading away from the entrance rather than toward it. The cemetery was closing at 5 and I feared I'd get stuck in the back roads. Not that I was very far from the entrance-maybe a couple miles. Far enough so no one would notice if my car broke down. I kept driving-the road was too narrow to navigate turning around and the last thing I wanted to do was damage a gravestone. My anxiety was bordering on panic which made no logical sense. I had my cell phone. I kept driving and suddenly stopped my car. About twenty feet in front of me were 4 deer stopped still in there tracks waiting to see if I was a predator. They were beautiful. I love deer as well as their symbolism. All 5 of us waited for the others to make their move. I sat quietly in my car softly whispering to them that it was safe to continue on their journey. And that's what they did. And I knew everything was going to be okay. It felt like a gift to see all 4 of them standing there.

And where I live there are these beautiful Robins that keep coming by and sitting on the tree outside the window. On the back porch hangs a hummingbird feeder where I can sit outside, read, drink tea, and watch for the hummingbirds.

I spoke with my cfids doctor on Thursday. I thought my appointment was Friday so I was both surprised and unprepared for his phone call. We talked about the available treatment options for me at this point, my lack of money, and what was feasible. He still thinks I need to take Valcyte. He said out of everything out there right now this is the one that might be the "homerun." He said everything else might be a base hit. So I'll start Valcyte on Monday. I'm just going to do it. It's not a guarantee by any means. Trying to treat this illness feels almost like the old gameshow where people would have to make a choice between three doors hoping they don't get the "booby prize." I'll choose Valcyte and hope it doesn't make me worse.

I talked to him about antidepressants and the doctor appointment I had where the doctor wanted to diagnose me with MS or some other slow virus. He was appalled when I described what happened. Unfortunately he didn't have any recommendations for me.

We did have an interesting conversation about death. I wanted to continue it but I was paying by the minute. I told him about Dr. Kliman and that I'd hoped his death wasn't as horrible as it sounds-to die alone in an elevator shaft. Ugh. It makes me so sad. My cfids doctor said he's seen some amazing things. People, when they realize they are going to die, might get fearful for a little while but that is soon replaced with an entry into another world that is beautiful and peaceful. He said he's witnessed this many times. The picture I have on this blog is a woodcut made in the 17th century and is of someone entering another world.

I think it's possible for those of us with chronic illness to enter into this place.

My doctor also said there is a new treatment about to be made available to doctors. It's some sort of stem cell signaling factors. I've been injecting myself with this thing called Cell Therapy for the past 4 months but it hasn't done a whole lot. I'm hoping the new treatment will be helpful. I know Dr. Cheney was working on something like that with pretty good results.

I started on Amantadine which is an antiviral and also a dopamine agonist. Dopamine levels can be low in people with cfids. It's also used to treat fatigue in people with MS. We'll see. Hopefully it will help.

I started the self help course on Monday the 12th. I don't know what to think of it as nothing has happened but introductions. I think I was expecting it to move at least a little bit faster.

I sent my introduction email to the wrong place. I was a bit surprised at finding out where it went. I guess they are used to cognitive slips. I'm sure it didn't help much when I sent another email telling them I also gave them the wrong address so who knows where the book will end up.

Thursday, January 8, 2009

In Search of a Doctor

My search for a new doctor continues. I saw the HIV doctor today for the second visit. I figured I would see if I had a similar experience as the first time.

Most of my medical records had been faxed to him. He wanted to be sure he had my medical records to look over and then decide on treatment and asked me to contact my cfids doctor as well as Dr. Kliman's assistant to stress the urgency of getting the medical records to him. My cfids doctor's office had gotten my medical records to him but he didn't have a chance to look at them so he was quickly flipping through pages during my appointment.

Then he mentions that he's prepared to start Valcyte treatment with me but that he usually prefers IV Valcyte (cytovene) since that crosses the blood brain barrier better. I asked if Valcyte crossed the blood brain barrier (knowing full well that it does after doing research on it). I asked if we could go ahead with the IV (a friend of my dad's has cfids and had IV cidonavir (?) and had good results from it. The doctor ignored my question. I've learned he just ignores most questions I ask.

He decides he wants me to have a functional MRI which is a new, and stronger version of the regular MRI. You do things while in the MRI (for example move a finger) to see how the brain responds. He stressed over and over during the appointment how much he wanted me to have this as this would provide some definitive information as to what is wrong with me. I thought we already knew??? Anyway, I told him I have severe claustrophobia. He ignored me so I tried again with the same outcome.

He was asking his nurse or pa if he should just write a prescription or not for the Valcyte (I guess he was confused because I told him I was approved for patient assistance through Roche for free Valcyte). He didn't bother listening to me as I kept telling him that I already had Valcyte at home. I didn't know how much more specific I could get with him. I HAVE THE VALCYTE AT HOME. I HAVE THE PILLS IN MY CUPBOARD. I HAVE THE PINK PILLS IN MY HOME. It wasn't until his nurse or pa came into the office, heard me and said "you mean you've had EBV levels this high for over one year and you've not started taking the Valcyte you have?" Huh? Did I just walk into the wrong movie? Did you not hear me when I told you my doctor died and I was trying to find a new one? The nurse/pa went on to say "I've never seen as high EBV titers as yours. It means something else is going on. That's why we want you to get the MRI."

Sigh. My cfids doctor has largely ignored my EBV titers and been focused on HHV 6. At one point after I brought up the fact that my titers seemed high he said "oh. You're right! They are really high! How did I miss that?" At least he listened to me.

So this doctor (HIV one) is "convinced" that I have a slow virus. I'd looked that up last week and found scary stuff. This week I asked him what he meant by slow virus. He tried to ignore me but then said MS is like a slow virus. I said I looked up slow virus on the internet and it wasn't good news. They were all fatal. Silence. "Yeah. I guess I shouldn't look at the internet because it kind of scared me." More silence.

I freak out on the way home thinking "what if he is right? What if I have a fatal illness? What if I have MS?" I had to peel myself off the ceiling several times today. Finally I calmed down. I decided to call UCSF which is the only place in the bay area that has the functional MRI machines. They were very helpful. But it's the doctor who has to call their doctor and then set up the appointment. It turns out that it's a closed MRI machine and that it lasts for 90 minutes. There's no way I'll last 90 minutes in a closed MRI machine with my claustrophobia. That would be like telling me to get into an elevator that will malfunction (I've always had a horrible fear of getting stuck in an elevator).

I think I'll move on and find a new doctor. I'd like one who listens to me. Thank goodness I didn't go to this doctor when I first got sick.

This does make the fourth doctor who recommends Valcyte though.

The final straw with me though was when I asked him if there were any side effects or anything to be concerned about when taking Valcyte. He said no-it's a safe drug. Hmm. That would be the safe drug that can shut down bone marrow production? The one that you are supposed to monitor blood count weekly for the first month to make sure you don't develop a low white blood cell count? That safe drug??

I don't get it. He was rude in the way he didn't listen.

I called another doctor's office but have to wait until Monday to find out if I'm accepted or not. The woman sounded really nice and said the doctor is familiar with cfids but doesn't accept that it's a 'real' illness so he does lots of testing to find out what's really wrong.

When did the medical system switch to having to interview to get accepted by a physician's office?

All I want is an internist who is covered by my insurance-who will listen to me, believe me, and just be a good doctor. Like Dr. Kliman was.

Sunday, January 4, 2009

I Dreamed a Dream


This is from one of my favorite plays Les Miserables. I would love to see it again. Sometimes having this illness feels like this:

There was a time when men were kind,
And their voices were soft,
And their words inviting.
There was a time when love was blind,
And the world was a song,
And the song was exciting.
There was a time when it all went wrong...

I dreamed a dream in time gone by,
When hope was high and life, worth living.
I dreamed that love would never die,
I dreamed that God would be forgiving.
Then I was young and unafraid,
And dreams were made and used and wasted.
There was no ransom to be paid,
No song unsung, no wine, untasted.

But the tigers come at night,
With their voices soft as thunder,
As they tear your hope apart,
And they turn your dream to shame.

He slept a summer by my side,
He filled my days with endless wonder...
He took my childhood in his stride,
But he was gone when autumn came!

And still I dream he'll come to me,
That we will live the years together,
But there are dreams that cannot be,
And there are storms we cannot weather!

I had a dream my life would be
So different from this hell I'm living,
So different now from what it seemed...
Now life has killed the dream I dreamed...

This Too Shall Pass...

I don't feel as sad, guilty, and despairing as I did earlier. I don't feel full of joy by any means but it's a relief not to be in that other place. The place where "the Blue Meanies" (thanks Alwyn) live.

I wish there was a book about people early in their diagnosis with this illness. I would find it helpful to read. It's quite helpful to get feedback from people like Renee who normalize the feelings that I had expressed earlier. It's a relief to know I'm not crazy. Just trying to sort this whole mess out.

I finally figured out how to find people's blogs. I've always enjoyed hearing people's stories so it makes sense that I would enjoy reading them. I just don't have them sitting here in the room with me.

Last night I was peeling sweet potatoes using Daphne's potato peeler. I was struggling and it was taking forEVER to peel the first potato. I finally stopped and went on a 10 minute search for the new potato peeler we had purchased. I find that since becoming ill it takes me awhile to look for things because I often look for the thing in the same place over and over. Or, I find the things that I misplaced prior. Or, I rediscover something I'd forgotten I had altogether. Looking for things can be an adventure sometimes. This time though I was feeling frustrated. I was really tired and couldn't figure out why it was taking so long just to peel the potato. I gave up looking for the new potato peeler and went about peeling another one. By the fourth potato my fingers were sore so I accidentally dropped the potato peeler. I picked it up and started peeling again. I was astonished at how much easier it was to peel the rest of the fourth potato.

It took me 4 potatoes to realize I had the potato peeler backwards.

I remember when the initial results of the Valcyte study came out indicating (at least at first glance) that there was an improvement in cognitive functioning that was statistically significant but that the reduction in fatigue was not statistically significant. I thought to myself oh, forget that-if I can't DO anything what does it matter if my cognitive funtioning improves.

I'd take that now in a heartbeat. If I could read and write at the level that I'm used to that would be fine. I could read all the books in my little library. I could write articles like my dissertation committee wanted me to.

For those of you who read my blog-thank you. I appreciate your willingness to venture into the dark night of the soul with me.

Days Like These...

I'd love to be writing about something different. I'd love to be writing that I've seen the face of God or had a glorious spiritual encounter or was experiencing the deepest sense of joy imaginable.

Nope. I won't be writing about that today. Maybe not even for awhile. Maybe never.

Today I had one of those moments of being hit so hard with reality that the moment was hard to bear. It's bad enough that this has destroyed what was my life. But to look into the eyes of someone I love and see the pain and destruction there as well....It was almost too hard to bear. I thought to myself. I have to die. That's the only way out. It's the only way to release someone else from this horrible suffering as well.

I was already feeling badly physically and emotionally. I'm scared that the treatment direction is so unclear. I feel like a ship without an anchor tossed about in a storm.

I don't even know if I'm making sense. I don't much care at the moment. I have no where else to turn. No one else to turn to but this blog. One of the hard things about this illness is that people really have no idea what it's like to live with this. To have one's energy just sucked away. I don't know how to describe it. It's not like I can call any of my vanished friends and say "I really need to cry on your shoulder." The truth is I have no one to call and express how frightened I am.

I don't know how to cope with this anymore. I was doing somewhat okay for the past year but somehow the move cemented the fact that this isn't a temporary thing.

My CFIDS doctor is certain (as certain as one can be with this illness) that Valcyte is the only thing to do at this point. I'm not convinced. He hasn't even done very much testing so I don't see how he can be convinced yet he's the only person I have on my treatment team that has a partial clue.

I'd love to go to therapy but I don't have the money for that. Nor can I count on having the energy to make it to a weekly appointment.

I'm staring this illness in the face and I don't like that what I see reflected back is me.

I'll go on for another day and hope tomorrow is better. At least tomorrow I can call my CFIDS doctor's office to make an appointment.

Thursday, January 1, 2009

Hope

I think one of the most challenging parts of this illness (and there are many) is one of maintaining hope. I don't know how to do it. Maybe I should shoot for acceptance.

If I can't have my health back then at least a sense of meaning and peace.

I don't feel as grim as I did yesterday (back in 2007). I'm grateful for that. I had a couple strange dreams. Prior to falling asleep I found myself deep in a sense of despair. I thought to myself well, if I'm not going to feel better and I'm housebound then at least I'll look into medical marijuana.

I dreamt that I was at some sort of bar like place only it wasn't a bar. The guy was talking to me about pot and showing me some new kind that was a tan color-sort of the color of Carmel. It could be stretched like taffy. Although in my dream I didn't want to start smoking pot I found myself intrigued by this new form of it. Suddenly the dream shifted and I realized that I'd bought $253 worth of pot. Only it wasn't buds or plants, it was in all these different forms, and shapes. I was really happy with my purchase and that I'd gotten a deal (no pun intended). It was almost like a rock collection(which I had as a kid, along with a coin collection, map collection, book collection, chemistry stuff, etc). The dream made me happy. I think having it had something to do with a shift in my mood.

In the other dream I realized I still had a lot of work to do (or more than I thought). I thought to myself as soon as I can get this depression to lift I'll get back to it. This could be a hopeful dream in that I still have work to do and it's not over. Because I associate depression with fatigue I think my dream might have been talking about not only the depression but also this illness.

I always feel like I'm on the edge of falling into that depressive pit. I remember talking to Dr. Kliman a couple months after I was diagnosed (he was asking about depression) that I was surprisingly not depressed. I've learned since then that depression can and does accompany this illness for a couple reasons. One is the stress on the body due to being ill for so long causes important chemicals in the brain-dopamine and serotonin mostly-to become low creating a depression induced by illness. Then there is the circumstances of being ill-the grief that accompanies it-with all the loss there is to bear.

So there is a double whammy of depression-both are very powerful. I'm sure too that the brain inflammation doesn't help. It's unfortunate that the depression experienced by people with this illness gets mistaken as being the "real" illness when in fact it's secondary. To complicate matters is that because there is an injury to the brain from whatever pathogens/toxins/bacteria are at play, it can create a sensitivity to medications making it hard to tolerate the side effects of anti depressants. People with this illness are often quite sensitive to medications.

Regardless, the other decision I made last night was that I was going to go on anti depressants. Dr. Kliman had prescribed Prozac (which just made me agitated) and then Wellbutrin (which made my anxiety high and my heart race) just for the purpose of trying to energize my body. I'm willing to try again but this time with the purpose of trying to avoid the depth of depression that I've been sinking to.

I'll call my csf doctor next week and ask him to write a prescription for something.

We'll see.