Friday, October 23, 2009

So Close Yet So Far

There's lots to catch up on. I feel the usual slight frustration knowing that my cognitive faculties aren't all there. When I was in school or writing my dissertation I'd get a great feeling when I felt like I expressed exactly what I wanted to say. The word finding problems as well as problems with short term memory make it more difficult to write. Writing also makes me more self-conscious of my cognitive difficulties. There are many, many people with ME/CFS who have written books, articles, poetry, music, etc..Not to mention Laura Hillenbrand who wrote Sea Bisquit (and has another book she is finishing!) while ill. When I read others' blogs etc...I feel hopeful that I might experience a return of some cognitive functioning. I already have. But I want more.

I'm a little burned out about some things. One of them is ME/CFS message boards. A little while ago I put up a post on my blog regarding testing. I got the information from someone who somehow manages to find out these things and had permission to repost. I thought it would be helpful for people who wanted to get tested. I was surprised when I found my post quoted word for word on a message board. Then I saw it on more message boards and then Prohealth had something on their website and mentioned this blog. That's what got me upset. Prohealth did not contact me asking ofr permission to repost. I was a bit surprised that they would copy someone's blog and not ask for permsission to repost. Then the piece that Prohealth did got reposted on various lists which greatly increased traffic to my blog. I should be happy about it but instead I feel intimidated, a bit embarrassed and caught unawares. I feel like I do when I dart outside in my pj's to get the paper thinking and hoping no one would see me but just as I'm outside my door a large busload of people drive by and there I am-outside in my pj's. And it's 3:00 in the afternoon.

So I stopped posting about anything personal because I felt like people don't want to hear about the emotional aspect of living with this horrid disease but would rather hear about the latest updates on XMRV. I had to remind myself why I started this blog in the first place.

I started this blog about six months after I was diagnosed in order to talk about what is was like to have this, to track my progress, symptoms, and responses to various treatments. If I had to tell someone what this blog was about I would say its about the emotional aspects of adjusting to living with a devastating and crippling chronic illness that took my ability to live my life (the way I want to) away. It took away my hopes, my dreams, and my beloved career. This blog is a place for me to express what it's like to live like this.

I feel like I had reached a place of peaceful acceptance right around my birthday. I'd fallen into sort of a rhythm again. It was nice not to be so consumed by grief, shock, and despair. I was feeling good about the improvements gained from various treatments.

Then the news about XMRV came out and I was swept away. I crashed and burned from all the reading, research, phone calls, etc.. that I did. About a week after the announcement I found myself feeling strangely agitated and angry but couldn't figure out why. I knew I was crashing and last week had a low grade fever off and on but that didn't explain the agitation/anger. I finally realized that I was having an intense experience of "we are so close but so far."

I do feel that this is a big player in our disease, probably the driver but that doesn't mean I'm going to get well now. The news opens doors, ones that desperately need to be opened. That so close but so far feeling has reawakened the grief in me and a deep longing to return to my career. I cried for a long time last night about it.

I started Artemisinin on Tuesday. My ME/CFS doctor said it had antiviral properties but I'm having a hard time finding anything about it having antiviral properties on the internet. It's helpful for malaria, babesia, and parasites but viruses??? I am concerned about liver toxicity as it can cause hepatitis.

Tonight I'll start Low Dose Naltrexone. Hopefully that will help. I have no idea what to expect from it but I'm encouraged by what I've been reading.

Today I've been feeling very much like I'm in a bad viral flare again with chills, etc...

My SSDI attorney heard about XMRV and wants me to get tested for it. I heard from the Court in early September. They wanted additonal records to see if they could make a determination without me having to go to Court. This is routine. My attorney said I'll have to go to court because there isn't enough evidence for them to make a ruling on the record. Unfortunately, everything is delayed because my ME/CFS doctor is too busy to fill out the SSDI forms (its been one month now). My attorney is frustrated at the lack of response and has sent two requests to no avail. I told my attorney about my second doctor dying. He was in a pretty bad mood the day I spoke with him. He said "you had ANOTHER doctor die?" in a tone that was somewhat blaming.

My car isn't working-the battery keeps dying. I just find that so symbolic. I've been having problems with the car battery dying ever since I got ill. What's a real drag about not having a car is I can't go to any doctor's appts right now nor can I follow through on the sleep study a doctor ordered etc...I'm feeling even more housebound and isolated as a result. Not that I can drive far but I can only walk a block so driving is kind of critical. Taking the bus isn't an option until the orthostatic intolerance has eased up a bit more. I might need to increase my Pindolol because I'm getting heart palps again.

My dad has a reoccurrence of prostate cancer and chronic lymphocytic leukemia. I told him about XMRV. He was going to bring the information to his oncologist. Luckily he is responding to treatments. Given my family history I would be very surprised if I don't end up being positive for XMRV. And that isn't good news.

I

19 comments:

  1. Dear Heart, PLEASE contact a local church until you find one who has members who will help you get to your appointments.

    Also, St. Vincent DePaul is an AMAZING organization. Contact your local Catholic church (no - you do not have to be Catholic to benefit).

    I met with two members of my local parish (no - I am not Catholic). They pulled out a check book and wrote a check for $1,000 to help me cover my rent.

    I am so sorry that you ( and I and millions) are suffering from this hideous disease. There ARE benevolent souls who will feel actually privileged to assist us. We need to lay aside all shame and keep asking for the help we so richly deserve until we FIND it.

    A hundred thousand blessings to you.

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  2. Anonymous-

    Thank you for taking the time to read a long blog post and then respond. That's a great idea.

    I too am sorry that you and I and millions of others are suffering from this.

    And a hundred thousand blessings back to you....

    I wish you much peace and healing. May we all be released from this...

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  3. I am a patient of Paul Cheney - he has his patients using artesunate (a derivative of artemisinin) and wormwood solution from Mediherb, switching from one day to the next.

    If you do a search on "artesunate" and "RRP" you will see find research demonstrating that artesunate is an effective antiviral for HPV.

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  4. Terri,

    I'm so sorry about what happened with your blog, especially since you write with such honesty about your life. Yes, the blog is public since it's on the web, but it must have felt like your privacy was invaded to have it used without your permission on so many other boards. Like you, I'm overwhelmed by this XMRV news and it's making my symptoms worse. My doctor wants me to get tested but the cost is so high that I just don't know what to do.

    I feel like with this post, you've "taken your blog back." Thanks for sharing your life with us.

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  5. Hi Toni-

    Thank you. Yes-it does feel like with this post I've taken my blog back. I appreciate that you got it and that you got that even though it is a public blog I do feel like my privacy was a bit invaded. It's been a strange experience.

    The XMRV stuff is overwhelming isn't it?

    I was hoping that VIP wouldn't set the price so high. I'm disappointed in them as they have to know that we are a community of people with limited resources.

    I'm wondering whether eventually insurace will cover it but that might be years down the road.

    You're website is beautiful by the way. It was an absolute treat to visit it.

    Thanks again Toni. I hope your flare eases up really soon.

    Wishing you much peace...

    Terri

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  6. Anonymous-

    How do you like seeing Dr. Cheney? I would love to see him. I'll google artesunate and RRP (what is RRP?).

    I've heard that Dr. Cheney has a website that recently went up. I think I'll google that as well.

    Thank you for letting me know about artesunate and artemisinin. I appreciate it.

    Terri

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  7. Terri, First of all my modem is dying so I may be off if you reply to me...I don't know.

    And one of the things I do like about Facebook is the ability to set a profile private, but I like blogger since no-one is bugging me with application/group requests or messages. I'm really sorry , too, that they copied what you wrote.

    I didn't know a price had been set for the test. Can someone post what it is? And I'm sensing it will have to come out of our pockets, yes?

    Dr Cheney has a website but it costs per month to be able to read the links. The cost, to me , is outrageous, esp from a man who should know how broke most of us are. You can sign up for it for free but if you can't read it....??? He has an old website that just defines the illness, things we already know. I was so disappointed when I saw that.

    Let us know how naltrazene works for you. I'm so ambivalent with my weird med reactions.

    As for writing. I have the same frustration. I still do write, but it takes me forever and have to keep stopping and doing only a small amount at the time or each day. I always used to joke that I didn't have much brawn but at least I had my brain. Well the joke is on me now.

    Pris

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  8. Hi, I've been having similar thoughts lately about my blog. I have a very small readership and it feels very intimate. I tend to forget that it's 'out there' for everyone. You have, in a way, been a victim of your own success. The name of your blog is spot on - CFS Warrior - so that attracts interest to start with. But you write so well and so knowledgeable it is no wonder you are plagiarised.

    I've been feeling some physical backlash from the emotional effort of not getting my hopes up about XMRV. Jody on Ncubator talks about the fatigue induced by all the new research we are each doing - and after all this, what if we test negative? What if we are still ill and the virus is not at the root of it?

    You are right, so near and yet so far. Gentle hugs.

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  9. Hi Terri
    I too have had to think about everything I write on my blog...I write pretty straight forward personal stuff at times not remembering that my commenters are only a small group of who reads the blog. Quite awhile ago I wrote an article when I was in a dark place and mentioned that my children upset me because they do not contact us often enough for me~ even though I wrote it from being my problem, not theirs....One of my children who is very private, was very very upset ~ although another took it to heart and calls us much more now. I took the post off and promised not to write about them in such manner again.. as their feelings are important to me.
    STILL, I must say that I write to express myself and hopefully help others at time. I have not had your experience of finding what I wrote in so many other places, that would be upsetting and me a person feel vulnerable....but I am so glad you are back to sharing what you are feeling and going through...selfishly it has helped me at times and I would miss that.
    Sorry you are not feeling well right now ~ I am lifting you up in prayer today.
    Take care

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  10. I'm so glad you enjoyed my website, Terri. I created it lying on my bed with my laptop (I call it my bedtop). It took months and months to make but now, unfortunately, I can't update it because the iWeb program changed and I haven't felt well enough to learn the new one. Only the family pictures are out of date though.

    I hope you're feeling a bit better.

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  11. Hi Pris-

    I'm still figuring the whole Facebook thing out. I have some sort of virus on my Facebook page.

    They have set a price on the XMRV tests. It's an outrageous price of $400 to test for active infection $500 for latent and a "deal" of $650 for both tests.

    I just read that another company is offering the test but can't remember the name of it. I've never heard of it and I'm almost positive that the VIPdx lab uses the same technology that the WPI used. And yes, it does look like it will come out of pocket.

    Did you see on Facebook where the National Cancer Institute is involved in doing some "global studies" regarding XMRV? Things seem to be happening more quickly than I anticipated.

    I'll keep you posted about the Low Dose Naltrexone. It's relatively inexpensive at about $30.00 per month. If you try it don't make the same mistake I did and start at too high a dose. I'm sensitive to medications that cause sleep disturbance and didn't sleep at all the first night.

    I checked out Dr. Cheney's website. A friend subscribed and she lent me her password. I can say with confidence its not worth the money. I'm surprised that he's charging for it and its pricey!

    You are an inspiration to me because your poetry is wonderful and your book looks great. It is really hard to accept the loss of cognitive functioning isn't it?

    I hope your moden gets back up and running again.

    Terri

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  12. Hi Jo-

    It's so strange about blogging. I tend to forget it's public because it feels more intimate in that I feel like we have a close circle of people in our community so it was kind of a shocker to get a dose of reality.

    Another blog post was copied by someone else over the weekend. Ironically it was copied and posted on another message board at the same time I was writing this post. I don't mind at all if people use the info on their own blogs but I don't like to be on the message boards because its too easy to be targeted and scapegoated (I've had too much scapegoating in my life thank you very much so its a tender issue).

    I go back and forth between wanting to make this blog private with only invited readers vs letting it be public and possibly helping a newcomer to this illness.

    Well, I could have written another blog post by now!

    Yes-I've been having similar feelings as you regarding XMRV. I did get my hopes up but now feel I'm in a more realistic place. It has been an emotional roller coaster though, hasn't it?

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  13. DOUBLE YIKES to that price!! That's totally outrageous!!!!

    And thanks for the feedback on the Cheney newsletter. I've written him about it.

    I've read about started low with Naltraxene and a friend just wrote and said she was going to try it because of her pain. I really want something that helps with brain functioning and energy. Dizziness problems would be great, too. Is it supposed to help with those??

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  14. Hi Renee-

    Your blog has helped me also as well as your comments. I went through a similar experience as you. A couple friends told me that since this was my blog I was free to write what I felt and people can choose to read it or not.

    This blog is really the only place I have to express myself like this and its precious to me in that I've gotten to meet and know you and others who have helped me more than you know with your blog posts, comments, etc...

    Thank you as always for your prayers.

    Terri

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  15. Toni-

    Your website is truly a piece of art. It is uniquely creative and just stunning. I have no idea how to make a website. I am very impressed and inspired. I would love to post a link to it on my blog but don't want to invade your privacy. Your family is beautiful!

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  16. Hi Pris-

    I know! Aren't those prices outrageous! I have to say I'm disappointed in VIP labs. They've got to know how strapped for money we are as a community.

    I think the Low Dose Naltrexone might help with cognitive functioning. I've noticed a slight difference. As I do more research on it I'll keep your question about whether or not it helps dizziness in mind and let you know.

    From what I've read it does help with energy too!

    If I find good websites I'll post them for you.

    I'm glad you wrote to Dr. Cheney. I don't get the monthly charge to read a couple paragraphs about various things and it certainly doesn't clarify anything.

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  17. Terri,

    I'd love to have you post a link to my website. I'm so glad you enjoyed it. It means a lot to me.

    Toni

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  18. PLEASE make sure that you mention to Dr. Mikovits about your dad, and try to get him tested. You and your dad are the kind of people we have to know about (I am a scientist working on the virus; a colleague of Dr. Mikovits), to understand the links between XMRV and the different diseases.

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