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.

21 comments:

  1. I think I've responsed to your posts before with the message that I totally get everything you're going through. I've just gone through it with different doctors/people in different cities. There are so many of us experiencing this "trauma" to end all traumas. We are all living the same nightmare, but with different actors and stages and props. However, the lines are usually the same.

    I, too, have been putting off going to see a new dentist, skin doctor, ob-gyn, etc. since we moved because I dread going through the whole listing of meds, why aren't you working, tell me what's wrong with you again?, but you look great to me? Were you sexually abused as a child? All your problems are anxiety-related...you need to get that under control...blah, blah, blah.

    I've ridden the Valcyte train and remember waiting for the blood to come back okay and never hearing from my doctor's office and getting annoyed that I always have to harass his office at times to get results. I also remember almost fainting to get to the labs and during the blood draw.

    I did have a good week last week and got a lot of mindless chores done and cooked meals, etc. That felt SO good...to be somewhat normal. I could have left the house if I needed to but now I seem to prefer to stay in my protective bubble...

    Hopefully all the Valcyte agony will bring you to a higher level of functioning and you can take it from there.

    I have so much in common with your posts and could go on and on. Sorry to ramble on about my woes...

    hang in there

    GKT

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  2. Hey Terri,

    I also know exactly what you're going through - maybe not exactly because doctors may look at men and women differently in terms of our symptoms, but similarly in your depression and despair about being ill.

    I got sick in the Fall of 2005, and only recently have I started learning how to deal with being ill. It does get better over time. The shock of going from a fully functional person to one with quite a few disabilities is intense, but you WILL deal with it. You have no choice. You will find certain protocols that will make you feel better. You will figure out what to tell yourself when you get in moods like this, and there will be fewer occurrences of it. You will discover which friends and family members are worth your time, and ignore the rest. You will find a doctor or two you can count on. But it takes time, so be patient. It will get better over time.

    -chris

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  3. A mighty wind blew night and day.
    It stole the oak tree's leaves away,
    Then snapped its boughs and pulled its bark until the oak was tired and stark.
    But still the oak tree held its ground while other trees feel all around....
    The weary wind gave up and spoke, "How can you still be standing, Oak?"
    The oak tree said, "I know that you can break each branch of mine in two,
    carry every leaf away, shake my limbs, and make me sway.
    But I have roots stretched in the earth, growing stronger since my birth.
    You'll never touch them, for you see, they are the deepest part of me.
    Until today, I wasn't sure, of just how much I could endure.
    But now I've found, with thanks to you, I"m so much stronger that I ever knew.”

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  4. Terri
    I am so so sorry you are struggling so much right now. I cannot believe that man who came into your life under false pretenses and with no consideration for you and how you are doing. Terri, in my thinking, he has emotionally abused you and if I were you i would be GONE from his little study. He is looking for proof of his narrow ideas on CFS and he'll find it because of his warped preconception of what CFS is. he is taking advantage of your vulnerability. Okay, enough ranting on that..
    I love Paula's poem. It is beautiful and it is true and it is you. You have great courage to keep going and to share your thoughts with all of us.
    You are NOT ALONE. We understand, we have been there and we go back there to the dark places within this illness that frighten us and fill us with despair.
    You have a real illness. I don'[t believe there is a cure ...yet. I connected with over 145 people with CFS for over 5 years and I saw that some medications help and hopefully yours will! Often, people learned to manage the illness and regain some health....I won't pretend that many do not regain their health, but go on to have good lives.
    Have you thought of going to North Carolina to Dr. Lapp or to Dr Jacob Tetterbaum in CA? Money is always an issue for all of us I know.
    You have an unwelcome guest living with you right now, and unfortunately you are having to learn to live with this ugly guest..not forever maybe...but for now. You are doing a great job on finding ways to help yourself and yet at the same time accept CFS in your life.
    I am wrapping you in prayer today for a place within yourself to rest,for relief from you pain and dark thoughts...and despair. Remember THIS IS YOUR ILLNESS TALKING when you feel deep despair. I am actually even wondering if the anti-viral you are on is killing off Babesia too from the Lyme? If you are not having some of what you told me is emotional herxing? This is a powerful and dangerous drug..
    Dear Sweet Terri, you will see the sun again..you will get back up off your knees and you will be okay...

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  5. And you know I'm always here for you, every single day, and that you are wrapped in love.

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  6. http://www.toddboston.com/Music1/ServiceSource.html

    Terri - plug in some earphones and listen to some music. This is my friend and whom I consider one of my guardian angels...

    Really listen to this, block out all other thoughts. It always seems to help lift my spirits.

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  7. Terri -

    I'm so sorry to hear that you're going through such a difficult time. All of us with CFS have been where you are now, at one time or another.

    THINGS WILL GET BETTER.

    I agree on getting out of that crazy study, especially after the way he treated you. I've participated in some very good studies; I'm sorry to hear you get tangled up in a senseless one. So many people assume that what happened to them applies to everyone else with CFS, too. It's best to just stay away from those people - you don't need the stress.

    If you are feeling as depressed and in despair as you've described, please don't give up on finding help. Enlist the help of a friend or family member to find a doctor who can help you or to go with you to the doctor to insist on trying antidepressants (I know how hard it is to stand up for yourself and argue with a doctor when you're so ill). I saw a psychologist who specialized in chronic illness for awhile, and she helped me immensely. Her grown son had CFS, and talking with her really helped me to deal with how my life had changed.

    Oh, and you're not the only one who fell apart at the doctor's office. I've had those visits where I ended up sobbing (and I have a great doctor!).

    You are not alone and things will get better. Hang in there.

    Sue

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  8. P.S. You know, if the herx from Valcyte is too much to bear, it's OK to skip a dose or two to give your body (and mind) a break. It won't harm your overall treatment - some doctors even feel that it's better to get some relief this was than to just ride out a very severe herx.

    Sue

    P.P.S. My psychologist was covered by my health insurance and only cost me $6 a visit. If you have insurance, check yours to see if it's covered.

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  9. Terri-

    I'm going to try to comment on your posts in the light of day from now on instead of late at night when I'm overtaken by my dark thoughts and feeling sorry for myself.

    I wanted to suggest that you read "Encounters with the Invisible" by Dorothy Wall. I really enjoyed it. It's about her journey with CFS. I believe she lives in the Oakland area so maybe she has some good doctor recommendations for the Bay Area. I think she has a website/email available. I can mail you my copy as I'm not sure this type of book would be in the libraries.

    DO NOT waste what little energy you have on "drainers"...you need to guard your energy with your life now...get RID of the uncaring doctors, "researchers," friends, and even family. Deal with them later when you are stronger.

    Also, why can't your CFS doctor put you on an anti-depressant?

    GKT

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  10. Wow. Thank you all for your comments. They brought me to tears and meant so much. I wish I could give to all of you what you have given to me.

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  11. GKT-

    Thank you. I wish we weren't sharing this nightmare but it's good to "meet you." I'm glad to hear your story as well. It helps.

    I'm so glad that you had a good week.

    It sounds like you had some succes with Valcyte?

    Thanks for telling me about Dorothy Hill and your offer of sending me the book. I have a leftover gift certificate with Border's so I'll see if they have it. If not I'll take you up on your offer. I looked at her website and was inspired by her. She does live in the bay area. I will send her an email.

    My CFS doctor and I talked about antidepressants last time we spoke. He told me to try Amantadine which is an antiviral and also raises dopamine levels. I stopped it after 3 days because it made me feel strange. I plan on talking to him about it when at my next appt.

    Thanks to for the great advice about getting rid of people who are draining in any sort of way. You are right. I think I've hit bottom around some things and will begin the letting go process of various family members, friends, etc...it's too painful not to anymore. Having unmet expecations drains my energy and I can't afford it.

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  12. Chris-

    Thanks for sharing a bit of your story with me. I get a lot out of hearing other people's stories. It sounds like you've been through the mill also with this.

    Thanks to for telling me that it gets better and won't always be like this.

    What sorts of things are helping you?

    It's good to hear from you. Thanks.

    Terri

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  13. Renee-

    Such wise words. It's good to be reminded that it's my illness talking. It can be overpowering as you are aware.

    After the guy finally left I felt like I needed a shower. It did have a quality of abuse. I'm going to send an email this weekend asking him not to use my material. The sad thing is I don't think he'll respect my wishes. Thanks for the validation. It was a creepy experience.

    Thanks for your prayer, your words, and for being here.

    Terri

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  14. Paula-

    Thank for the beautiful poem. It brought me to tears. Plus I love trees and feel they are so symbolic.

    Thank you too for the link to that music. It's so peaceful and wonderful (I'm listening to it now).

    Thanks for being here.

    Terri

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  15. Sue-

    Thank you too for your words and for being here. It helped to see that it gets better written in all caps. I needed that.

    Is it possible to just herx emotionally from Valcyte? I haven't had any real bad physical herxes yet just mild.

    Ugh. My insurance has a $500 deductible and then they pay 80%. It's unfortunate-I'd found a guy who specializes in chronic fatigue (for real and not fake) and sounded very nice but he charges $125 an hour and requires being paid up front and he provides a bill.

    I won't give up trying to find help. It's got to be out there. I really need to process this stuff. Obviously it gets overwhelming at times.

    Thanks again.

    Terri

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  16. Terri,

    The first thing that helped me was moving out of my dad's house. I'm starting to believe my CFS has a big environmental component, and though I'd had muscle weakness prior to moving to my dad's, that just blew me out and I crashed big-time.

    I don't have any real proof but I believe the simple Yasko supplements are helping me. Prior to getting sick, I'd always had a pain in my throat...not a sore throat that you get with a normal infection, but just some throat irritation. When I crashed, that pain disappeared. When I started the Yasko supplements, that throat pain returns intermittently, and when it does, my brain fog clears and my stamina increases.

    I'm not sure if you've already tried them or not, but like I said earlier...you will find something that helps. You'll learn to listen to your body and you'll get a better idea of what it's telling you. You're obviously intelligent so you'll definitely get through this.

    Things may not ever be the same but that doesn't mean they'll be worse!

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  17. Terri, it's been over a decade since I was as sick as you are. None of the treatments I tried helped at all. I realized I was on my own and that I had to learn to live with this. As your other commenters have said, it does get better over time. You will find what nourishes you and what to let go. I pray for you every day.

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  18. I'm coming rather late to this but I recognise so much of my own journey in yours. I'm with JoWynn Johns on this. Acceptance is a big part of it.

    And "just" depression?! Depression is a terrible condition. I was told by a rheumy I was depressed and I wanted to shout "YA THINK!". If I wasn't on the other side of the Atlantic I'd maybe come and yell at your Doctor too.

    So sorry for all you are going through. Try and learn as much as you can about this disease. Arm yourself with as much information as possible. And rest, rest, rest.

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  19. JoWynn-

    Thank you for your prayers. I do need them. I'm trying to find my way to acceptance. You are a role model for me in many ways.

    I have to post links to your essays. People will find them helpful.

    I'm trying to find my way into trusting things will get better one way or another.

    Terri

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  20. Jozephine-

    Thanks for reading my blog and taking the time to comment. I really appreciate that you wanted to come yell at my doctor.

    I think I need to learn how to yell. The doctor certainly deserved it!

    Terri

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  21. Chris-

    That's a great comment "things may never be the same but it doesn't mean they'll be worse."

    I've been on the simplified protocol for almost 7 months. I think it's made a small difference. It could be that I need to knock out some of the viral load before I'll see more noticeable improvements from it. I've also read that it can take a year or more to see more dramatic improvements. I'm looking forward to seeing the results of Rich's study.

    Terri

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