Thursday, February 26, 2009

The Priest

I have lots of thoughts and emotions running around. In keeping with my cognitive difficulties I doubt I'll be able to do justice to them but I'll try.

Yesterday, my mom's birthday, happen to fall on the first day of Lent. This hasn't occurred since she died. I decided to find a Church to attend Ash Weds Services not only to honor her but in the hopes that I might find her there. She was a devout though liberal Catholic and came from an Irish Catholic family. I loved her family. It saddens me to have lost contact with them since they were a big part of my life growing up. Even though we lived in different states we would travel to visit them a couple times per year ever since I was born. I have such treasured memories of times spent with my cousins, Aunts and Uncles.

I spent time looking up various Catholic Churches in the area and decided on one because it was one that my mom, dad, and I had went to once a couple years before she died. It meant a lot to me at the time.

But yesterday, steeped in the Valcyte depression, I changed my mind at the last minute. Instead I decided to go to the newly built Cathedral because by chance I found the priest that performed the wedding ceremony of my sister and her husband during the time my mom was dying. It was a beautiful and tragic day. My heart breaks for my sister when I think of how hard that time must have been for her. She and her husband had planned on getting married on Oct 26 of that year. She and my mom had picked out wedding announcements, invitations, and all sorts of other stuff that they ordered.

My mom had a very aggressive form of cancer that took her life 44 days after her diagnosis. One Saturday about 3 weeks before she died, she was really struggling emotionally. She was upset, angry, and wondering "why me?" Privately she would ask me if I thought we should move the wedding date up. I would always tell her that we would do whatever she needed and wanted. She would say to me "I don't think I can make it to October, I'm so tired." The only reason she underwent a harsh chemotherapy treatment was so she would live long enough to see my sister get married.

Anyway, that Saturday was very tough for her. My sisters and their husband and fiance were off doing something and wouldn't return until later that night.

Sunday my mom felt very peaceful. She said she had a spiritual experience in the middle of the night where "God told her everything would be okay and that we would be okay." But she desperately wanted to talk to a priest. My parents were very active in the local Catholic Church and they knew several priests in the area but they were all away on vacation so the Church sent this young priest whom I had never seen before over to speak with my mom. They cleared us out of the house so he and my mom could have some privacy.

They spoke for a long while. When he came out he said to us "we have to move up the wedding and we have to do it as quickly as possible." Four days later on Thursday the wedding occurred and was officated by this same priest. It was the most beautiful wedding I've ever been too. My parents were very popular. We had a huge backyard. Relatives flew in from out of state. My mom and I watched from the family room window as friends brought over baskets of flowers from their yards, chairs were brought in, the musicians showed up, the photographer was available. People brought in food they made. The backyard was soon transformed into a beautiful setting for a wedding. My mom was so weak by then that she had to lean on my dad and sister as she walked down the aisle but by God, she was going to walk down that aisle. And she did. Her belly and legs were swollen from the cancer. She was thin and frail and jaundiced. But she made it. And all her friends were there, and she saw her youngest daughter get married. It was a beautiful day. But the end. Oh, the end of the day was so painful. I watched with tears streaming down my face as she said goodbye to her brother and sisters and my cousins. We all knew it was the last goodbye. I knew mine was coming. I can't begin to describe the heartbreaking grief that was in the room. I don't know how we all made it through.

So I found the priest that was there those two important moments in my mom's journey towards death.

I set off to go to Church hoping he would be there and I could ask him if I could make an appointment to meet with him. I showed up to the Church early. I saw it was full of people but knew that it was the Mass said in Spanish so I waited outside the Church for it to end. Except it didn't. It started to sprinkle so I decided to go inside. It was a beautiful Church. I sat down and started getting worried. I couldn't understand what was being said because it was said in Spanish but I realized that the Mass was far from over and certainly wouldn't be over with by the time the english Mass would start. So I sat in the pew waiting, and waiting. Finally I looked at the Sunday bulletin and discovered that I had missed the English version of Mass which was held two hours earlier. I was deeply disappointed.

Today I went to Church again hoping to find the priest. He wasn't there. But after I searched for his office and found him. Even though I've only seen him twice his face was so familiar. Seeing him was bittersweet and brought up fresh memories. He remembered that time, remembered the wedding, my mom and dad. He said "they were an extraordinary couple" and "those were some hard times." It was wonderful to see him gain but surprisingly painful too. I made an appointment to speak with him. Then I got in my car and sobbed all the way home.

I'm very worn out and too exhausted to finish. Hopefully I'll remember what I wanted to write about later.

Thursday, February 19, 2009

Writer's Block

I think I'm having a blogging writer's block. I'm at a loss as to what to write about and feel a bit blank when I log into my account.

I feel as if I'm in limbo-which I am. I think I'm in a Valcyte limbo-waiting to see what's going to happen, whether or not it will work. I'm also in limbo waiting to see how I'll emerge from all this regardless of whether Valcyte works or not.

I feel like my stamina has improved a little bit. I hesitate to talk about any improvements because it could simply be the relapsing and remitting nature of this illness. Plus last February I remember having some good days.

Today I had increased fatigue along with body aches but my mood was better. I was able to go for a short walk. I enjoy being outside so much I just savor every moment of it.

I'm trying to figure out what to do with my hair. I used to see someone in SF whom I just loved both how he cut my hair as well as his personality. It was a real treat to see Charles I haven't seen him in 14 months now. During my last appointment with him I told him I was ill with a "strange illness" and would be taking some time off work so I probably wouldn't see him for 3 months. I was dismissive of my illness at the time although deep down I knew something was really wrong. He's been cutting my hair every six weeks for years and prior to that I went to his best friend for 10 years (who now cuts hair for some of the cast on Desperate Housewives). In addition to a great haircut, and good conversation, I also got some good gossip about the show (although out of respect for people's privacy I would never repeat it).

I can't handle a trip into the city so I've been getting by. First trying to trim my own hair trying to imitate what Charles did. That was a bad idea. Then I tried going to few local places. I have to do walk ins because I don't know if I'll be well enough to handle an appt and don't like to cancel on a hair stylist at the last minute. Now I go months in between hair cuts. I used to be so particular about my hair. It's time for a cut-I can't stand it anymore but I can't find anyone else who knows how to cut my type of hair.

There was a break in the rain today which was nice. I grew up in various desert type settings so lots of rain and me don't mix. At all.

Lent happens to fall on my mom birthday. I plan on going to Church-in part to honor her and also I'd like to participate in Lent this year. It used to be my favorite time of the year because to me it was the most spiritual. It wasn't commercialized. I want to deepen my felt sense of spirituality and so am looking forward to it. I'm hoping the Valcyte mood issues won't make my mom's birthday a tough day. For years after her death her birthday and the day she died were tough days. This year maybe I can meet her in Church. I tend to listen to Church services through Jungian ears because that's what makes the most sense to me.

Wednesday, February 18, 2009

Behind

I'm behind in everything. Not that I have much to do but the few emails I need to write, blogging, mailing a letter, going to the bank, and other small things are all still waiting for me to do something.

I had another good day on Saturday which allowed me to be out of the house for about 3 hours. It was really great.

Saturday night I slept for 12 hours straight through. I was very tired on Sunday. Monday through today have brought the mood symptoms back with a vengance.

Today makes it 31 days on Valcyte. I have a long ways to go.

Friday, February 13, 2009

Eye of the Storm

It's nice to have a break in the Valcyte mood storm although storm isn't really the word that captures the experience. I'm twenty six days into it and still here.

The past couple days have been spent battling anxiety and a revved up nervous system. This is an example of how my thinking would go: The anxiety starts along with heart racing, pounding, palps, etc so I tell myself "all I have to do is survive this moment." My next thought would be "OMG but there might be millions more moments like this-how will I survive!" I know when I'm at that level of thinking I'm in trouble.

This morning I spoke with my CFIDS doctor. Thank goodness. He thinks, though very rough, it's all a good sign. Ultimately, it's impossible to predict whether or not Valcyte will help. He did say that it's extremely important to figure out a way to calm my CNS system down. I told him I'd been doing relaxation exercises, taking Gaba Calm, L-Theanine, and extra magnesium. He laughed and said "that's like tossing a small dart at a raging bull." He prescribed ativan and one other thing temporarily.

He said that in order for my nervous system to heal and for my immune system to come back on board it needs rest. Interestingly, he said that the body needs energy to rest.

I've been concerned about dysautonomia which is when the autonomic nervous system malfunctions creating havoc with multiple body systems including the cardiovascular system. He doesn't think so. He thinks that when I go out in the world my CNS is overstimulated. Plus my neurons don't have enough ATP to manufacture energy.

All the heart symptoms I'm experiencing are fairly common in his experience so that's a relief. My VEGF is impaired but not in a major way. VEGF controlls delivery of oxygen in capillary beds. Cells that aren’t receiving necessary increases in oxygen and nutrients don’t function normally. Reduced VEGF leads to fatigue, muscle cramps, and shortness of breath. It can cause numerous other problems as well.

Luckily all the bloodwork measuring the potential toxic side effects (such as bone marrow suppression) of Valcyte are coming back normal. I get to graduate to every other week bloodwork rather than weekly as I've been doing for the past 4 weeks.

Another side effect or whatever it is from the Valcyte is I've started to get deep, deep brain pain. It's indescribable. I had an episode on Monday which lasted for a couple hours. Then last night I had one in the same place I used to get headaches when I first started getting sick. It was a deep throbbing pain that caused me to lie down. I can tolerate pain really well but this was a totally different ball game. I had a brief panicked moment where I wondered whether or not I was about to have an aneurysm or a stroke. My doctor asked where they occurred. He thinks its either viral die off or a side effect. He prescribed lidocane and ketamine nose spray. Unfortunately the compounding pharmacy won't have them ready until Tuesday.

But today has been a good day and for that I'm deeply grateful. I did two errands. When I was out in the world I wasn't plagued by the horrible fatigue and I didn't have episodes of dizziness. I deeply enjoyed every minute of it. It was a great feeling.

My doctor said "we're not giving up until we get you better." I almost started crying. I don't need to be cured. I just want to be better.

Sunday, February 8, 2009

21 Days

Today marks the last day of taking the 1800mg loading dose of Valcyte. I'm glad this part is over. Tomorrow I'll start taking 900mg one time per day (2 450mg pills). Because I'm crushing the pills I think this is the best way. I'll also save money on Applesauce.

I'm surprised at how few blogs there are about people's experiences on Valcyte. I find it helpful to hear about people's experiences which is one of the reason's I'm recording mine-in case someone finds it helpful.

To summarize the past 3 weeks the most dramatic effect has been my mood. It's a different ball game than regular depression (which is awful in itself). I had two days where I had intense weird anxiety that was almost intolerable. Taking Valcyte with food and a big glass of water seems to have resolved that. The next most troubling effect is heart palpitations and what feels like heart pain. This has occurred the past 3 days. I've had the heart palpitations with this illness but it has intensified with Valcyte. At night I can hear my heart pounding (I sleep with earplugs in because I'm sensitive to noise). The heart pounding and palpitations have been worrisome in that I've wondered if I'm about to have a heart attack. I did some research into this and other patients have experienced this as well. It's not listed as a side effect but seems more to do with possible viral die off. Because the virus is likely in my heart as well as my CNS it makes sense that I'm having increased heart symptoms. It's disconcerting nevertheless. Friday I had a period where I felt like I just needed to lay down. Yesterday I had bad body aches. Today has been unremarkable.

I started reading Encounters With the Invisible by Dorothy Wall. Luckily they had it at the local library. I highly recommend this book. It's very well written. Even if I didn't have this illnes I would enjoy the book.

Other than that I'm hanging in there. I'm trying to figure out how to accept this. I have moments but they are fleeting.

Thursday, February 5, 2009

Best Laid Plans...

I started reading a book called West of Jesus about a man who suffered from Lyme disease for 2 years and his experience trying to make sense of everything that happened. I was skeptical but the first couple sentences got my attention:

In the White Album , Joan Didion wrote, "We tell ourselves stories in order to live," and then proceeded to tell a story about a time in her life when the stories she told herself began to fail.


I can certainly relate to that. My stories of how the world works in terms of medicine, government, family, friends, meaning, everything have failed when it comes to the havoc this illness has wreaked upon my life. I'm sure many people can relate.

I don't have a new story yet. Who knows if I ever will. I hope so. I do know that it's not time to write one yet. I'm in the midst of trying to ride out the Valcyte mood storm. It's a doozy. The depths of depression that I've gone to....

In light of many events in the past 18 months I find myself feeling bitter and uninspired. Is this Valcyte too? I don't think so. I think it's feeling the sense of almost abuse at the hands of researchers, physicians, the government, the silence of people I thought I could count on, and just plain having had it with it all.

I agreed to participate in someone's dissertation research about this illness. This person said he has it too. Turns out not only does he not have this illness (he had gluten allergies, h pylori, and a couple other things) but the whole point of his friggin dissertation is to prove that the illness arises out of psychological trauma-an unspoken one. Had I known this I would never have agreed to participate in his bullshit. To make matters worse he stayed 4 hours. FOUR HOURS!!! And not once did he bother to check in with me to see how I was. I gave him every signal that I could indicating I was done, that I was tired, that I couldn't think anymore. It was like the guest that wouldn't leave. Unfortunately I invited him into my home-otherwise I would have left. Even though I asked what his hypothesis was he refused to tell me until we had completed the endless interview. At one point he said that when he was ill he "didn't have the luxury of taking time off work, so the most he took was 2.5 weeks." He was an asshole, pardon my language. I've been toying all week with sending him an email saying I won't participate in this but I get worried that maybe I misunderstood his premise because of the brain fog.

Then yesterday I go see another doctor. She's very nice-finished her MD in 2007. I hate telling people my story because I get upset at having to retell it. I have to explain why I'm not working, what happened, ect....She says to me are you in therapy to deal with all this? I start crying and tell her I would but I have no income. She asks about depression and I let her know that I'm feeling increasingly depressed and I'm getting scared about it. I also say that I think the Valcyte has something to do with it. By this time I'm almost sobbing. I can't stand it. It's almost humiliating telling this over and over and feeling like I'm not being believed. After all "you look so good." I ask her if I she can prescribe an antidepressant. Let's see, this is the 3rd doctor I've asked now. She says no because she's afraid it might interact with the other medications I'm taking. I just sit there feeling a bit shocked. What? Am I going to be another statistic-how many times do I have to ask for help? Do people realize that some of us spend the day trying to survive it? Trying not to take all the pills sitting in the cabinet, jump of that bridge that waits there, find the rope, or go sit in the car in a garage? Do people get how serious and how hard it is to live with this at times?

So then she sits and proceeds to tell me that people who've had trauma often get these type of illnesses. And that in medicine oftentimes doctors are left to think that it's nothing but depression! What?!

I'm sitting in there with the attractive medical gown on and we're talking. She says to me: "Gosh, you are so calm! I mean wow! I can't believe how calm you are! You could read books to kids and calm them down!" Hmmm. Did she notice that when the nurse checked my heart rate it was 100 beats per minute? Pretty high for a calm person. Or that my blood pressure was borderline high? Little did she know that it took me over ten minutes to get into the elevator. I've always had a fear of getting stuck in an elevator but after the way Dr. Kliman died in addition to the Valcyte creating havoc with my brain I was so frightened to get into that elevator. I asked the security guard if there were any stairs. None that were accessible to patients the guard said. That security guard saw my fear though. She watched me as I paced back and forth, as I sat down on the chair staring at the doors of the elevator, as I walked up to the elevator several times, pushed the button, watched the doors open only to walk away. I'm sure my behavior made her a little nervous as well.

She did tell me she was very concerned about me. Yeah right. When I left the office the doctor said "let me know if you get more depressed." Right, I'll do that.

So I've been feeling bitter and angry and thinking this is unbelievable to be this ill and get hit with "if you just work through your trauma then maybe you'll have a chance." I haven't wanted to blog because of these feelings but it's part of my experience.

I spend my days watching netflix movies on my computer. It keeps me distracted and involved in someone else's life. It helps but when the movie ends sometimes it's a bit rough.

I did have a victory today though I'm paying for it. I was able to slowly walk outside for about 18 minutes. I walked to the library. I felt very grateful about being able to do that. Tonight I've been having a bit of dizziness and some chest pain. I bet it's the trauma causing that. Not the tachycardia.

It's been 18 days on Valcyte now. I haven't heard anything from my cfids doctor about blood test results which is only a little concerning in that last week he emailed me telling me everything is fine. I'm thinking if something odd showed up in last week's blood draw he might be waiting to see what this weeks blood looks like. I got my blood drawn yesterday. The lab is good about getting the results to him quickly so if anything is wrong I know he'll let me know.

I had a lot of plans for my life. It didn't include this. Then I thought I could control this illness-had plans for how this would turn out to.

Turns out I'm not in control. Not in the least.

I do think there might be good news on the horizen for people who suffer with cfids. It might not be much but if it gives us some hope for the day or a couple weeks-that's not a bad thing. Anyway, the Whitmore Peterson Institute in NV will be presenting at the CFIDS Conference in March. I really wish I could be there. There will also be some new research presented with very promising results of the Methylation Protocol. The Whitmore Peterson people will talk about their facility and a test for CFIDS. In other words there is a test which PROVES this illness exists. It may not be on the market for another year or two but it's out there. The Whitmore's daughter was diagnosed with CFIDS at the age of 12. They donated 5 million dollars to the Institute. So all of you who have access to people in your companies make sure the Whitmore Peterson Institute gets added to your companies list of people to donate money to.