Update

I spoke with my ME/CFS doctor this week. I'm feeling very grateful for him. It really helps to have a doctor who gets it. We had a good laugh about the doc-in-the-box telling me that my gallbladder pain was a "muscle strain." Laughing about it felt satisfying. He had a couple ideas about what it could be. One was that it was Biliary dysfunction where the muscles in the biliary tract don't work correctly. It can be triggered by food allergies so I'll be going on a food allergy elimination diet to figure out if I have food allergies. He said the most likely culprits are dairy, soy, peanuts, gluten, and /or eggs. I'll eliminate all for three weeks then slowly add each one in (one at a time) to see what sort of reaction I have.

He also said that I could have chronic gallbladder inflammation in which case I need to have surgery to have it removed. The trick is how do I find a doctor willing to order the necessary tests to find out if my gallbladder is inflamed.

The third idea he mentioned was that toxins might be recirculating so I might try some sort of binder like cholestryamine ( I still have some leftover from the mold fiasco last year), chlorella, or bentonite clay. I decided against the clay because I already have enough trouble keeping water in my system so I'm chronically dehydrated. Apparently if one doesn't drink enough water the clay "can form a brick in the intestines."

I asked about XMRV but there is no other news. I don't have my results yet and it's unclear when the results will be in.

I've been wanting something to address all the inflammation in my body and this time remembered to ask so here is what he recommends: 1) kaprex from Emerson or 2) Zywobin Forte from Emerson Ecologies. I haven't tried either one yet so I can't say how either one works.

The early morning adrenaline like surges and subsequent anxiety is due to increasing autonomic nervous system dysfunction. He recommended a homeopathic remedy called "Coro Calm" and a supplement called "Phenibut." I'm trying to find the best source to purchase both.

We  talked about stem cells being my best chance at getting a big jump in improvement. He gave me the name of a company doing some stem cell stuff at a fraction of what Cheney charges. I plan on doing more research into stem cell treatment. It's still too soon to try it; Not enough information, too expensive and only 30-40% of people experience improvement,

He does neural therapy and trained under Bigelson so I asked if neural therapy can help autonomic nervous system dysfunction. He said "sometimes" and left it at that.

The not eating very much along with the toe surgery plus the regular ME/CFS stuff has left me quite weak. Most of my time these past 3 weeks has been spent in bed. My toes are healing extremely slowly and one looks like its battling an infection. The last thing I want to do right now is go back on antibiotics.

I've been doing some more reading on Jung. I'm hoping to start writing some articles next year. One of the things I did for my dissertation is read biographies about Jung and Freud (in Jung's case I read Memories, Dreams, and Reflections as well as the biography written by Diedre Baird). I found their personal experiences of death quite fascinating. Even more fascinating to me was how their experiences of death factored into (or not as in the case of Freud)  and influenced their theoretical formulations. My dissertation committee strongly encouraged me to start writing articles so I finally plan on doing just that. I need to focus on something other than this disease.

Doc In A Box

My computer went down again so I'm borrowing one but only for a little while so this will be another brief entry. It's a bit disorienting for me to be without a computer as its my only link to the outside world. Having contact with other ME/CFS patients is vital for me.

Thank you for all of your comments. They have been very helpful.

I spoke with my doctor. I'll be finding a new one. I really wish Dr. Scott and Dr. Kliman hadn't died. Anyway, this new soon to be ex doctor told me my ultrasound was normal and that I probably have a muscle strain! That's probably one of the silliest comments a doctor has made to me. I have classic gallbladder symptoms: bad pain between my shoulder blades after eating certain foods, pain that radiates to my right shoulder, some nausea, localized gallbladder pain, etc..... Maybe its me but I don't think that muscle strains cause these symptoms. She told me to take Advil and that was it. End of conversation.

I made an appointment with my ME/CFS doctor for Monday thank goodness. I'll bring up the suggestions that everyone made in my last post. I'm hoping he can order a HIDA Scan to see if my gallbladder is functioning. Something is wrong and its not a muscle strain. I know it.

I just want to get this dealt with whatever it takes so I can get on with figuring out the next step in my healing.

Brief Update

My computer has some sort of virus and hasn't been working. For some reason it is working now but it's shaky and I'm expecting it to go out again.

I had the ultrasound Weds and am awaiting a call back from the doctor. The tech said my gallbladder, liver, pancreas, and kidneys looked fine. It doesn't make sense. It hurt when she scanned the gallbladder area. I said "that must be my gallbladder because that hurts.

For some reason I wake up every morning around 5am filled with anxiety. It's very strange and seems to be physiological. My heart is racing etc....I'm not sure what's going on with that.

No news from the WPI. They have been very silent lately which makes me a bit nervous. I wonder what has changed from all the news to silence. I was going to donate some money but have decided to hold off until I learn more info. I'm beginning to wonder if the XMRV was a bit hyped up.

Gallbladder Woes?

It is quite cold outside which means it's also cold inside. The insulation in this place is quite poor so in the Winter I'm holed up in the bedroom with a heater. It's too expensive to heat the rest of the place so when I leave the bedroom its as if I'm leaving to go outside. I have to bundle up. I'm grateful for a warm bedroom though.

Last Monday I had the procedure done on my toenails where the podiatrist removed part of the nail down to the quick and then put a solution on them that would prevent the nail from growing back. It's strange that is was almost a year to the day that I had the same procedure done. At one point the doctor was giving me a shot between my toes. It hurt. I found myself thinking "he is not giving me a shot between my toes" and "isn't that what they do to torture people?" I didn't remember it being as painful last year. The rest of the procedure was a breeze. So far they are healing nicely and I find myself feeling proud of them. At least something in my body is going right (knocking on wood).

I did crash from it and spent the rest of the week in bed. It's been only today that I've been up and about a little more.

But it seems that my gallbladder problems have worsened. I don't know for sure that it is my gallbladder. I've stopped eating anything with any fat in it for the past week and today it seems a little spasm was triggered just by drinking water so I've basically stopped eating. Thankfully I'll see a doctor tomorrow. Hopefully she'll order tests right away so I can find out for certain what is going on. I've been stressed at the prospect of possibly having to have another surgery. I keep trying to find that inner place of knowing everything will be okay but find I have all these thought of what could go wrong. I worry about the POTS, my adrenal functioning, etc....It seems that the secondary complications of having this disease never end.

I've been feeling a lot of anxiety in the early morning hours. That's when I have all the worst case scenarios play out. I'm utilizing the amygdala retraining techniques to combat them. I need to watch the video again to remind me. It does help though not a cure.

I'm grateful that some neurological symptoms I was struggling with a few weeks ago have eased up. I'm not having the vertigo feeling or the sensation that I'm on the verge of a seizure. Nor am I having the nausea thank goodness.

Now its just the gallbladder, liver, pancrea section that is really troubling me (along with my regular disease). I'm a little nervous about getting weighed tomorrow. I think I've lost maybe 25 pounds now? I know that weight gain and loss are part of this disease but I can't get my mom's words out of my head. A couple weeks before her diagnosis of stage IV cancer she remarked at having lost 26 pounds. I remember her saying "I've lost 26 pounds now! Whatever I have I'm glad I'm losing weight!" She said it with pride but I could also hear the concern in her voice. She'd been on weight watchers but the 26 pounds was lost in a very short period of time.

Has anyone had their gallbladder out or had chronic pancreatitis? Any tips or suggestions?

Virtual Book Tour: Pris Campbell on Sea Trails

(super-quick update: I'm doing pretty well and have just been focusing on enjoying the holidays, the crash is easing and I'm catching up on some things)

I am very honored today to host a virtual book club stop for author and poet Pris Campbell. Her new book, Sea Trails: Poems and 1977 Passage Notes, is out and here's Pris to talk about her book!

What prompted you to write Sea Trails?

Actually, I never set out to write a book. I wrote Streaking, a poem based on the New Jersey leg of my 1977 trip down the east coast in my Tanzer 22 sailboat. A terrifying storm hit the night we headed for Atlantic City and I tied it in with the deteriorating relationship with my partner whom I refer to only as R. The poem was published in Empowerment4Women and tucked it away under my other publications.

I soon realized how much I enjoyed writing that poem, so I wrote more, based on other aspects of the trip. I started a sailing poems folder. From time to time, I would add to the folder. One day I looked at the poems trying to decide if I wanted to submit a batch to a journal and suddenly recognized that a book was actually trying to write itself. I dug out my old scrapbook from the trip, with photos and snippets of small charts from the area guidebooks along the way, then pulled out my old log books. Yes, I still had them almost 30 years later. I began going through the log notes and writing more poems as they spurred more specific memories. It seemed natural at that point to add snippets of the log notes since they provided a good transition between the poems. I merged and smoothed them out for better reading.

I still didn’t have confidence that it would be taken seriously with log notes, so I sent it to Lummox first with them removed, but mentioned what I’d done. Raindog said they actually sounded intriguing and asked to see them. He liked the combination and Sea Trails was born.

What prompted you to get into poetry in the first place and when was that?
I’ve loved writing since my childhood. In the sixth grade my class put on two plays I wrote and I started a novel when I was 14. My writing was set aside, except for occasional short stories or articles, for a number of years when I went to graduate school then began a career as a Clinical Psychologist. In the mid eighties I couldn’t suppress that longing anymore so began working on a novel in my spare time. I was in my second attempt at a decent one when I was hit by CFIDS, also known as CFS or ME/CFS, in 1990.

This illness isn’t just about being tired. All sorts of cognitive/neurological problems come with it. In many ways I felt as if I’d had a stroke, but didn’t have one. I had balance problems. I was swimmy dizzy. My thoughts were jumbled. My short term memory was shot. And on top of that light and sound were so overstimulating that my options were totally limited for about the first 8 years. When I finally found a doctor who was able to help me get some of these symptoms under control and deal with what was left, I was able to sign onto a computer for the first time. This was 1999. At this point it was as if I’d lost everything, so when I found a haiku site and found I could write some terrible semblance of the form you can’t imagine how overjoyed I was. Be it small, I’d found a way to be creative again. As I improved more, I moved on to free verse and found my real niche there. This was in late 1999.
Bit by bit my writing began to improve. I started to publish and things continued from there. I had always loved poetry and we had poetry books in my home as a child but I’d never imagined myself writing a poem.

So here’s the short answer…yes, yes, it’s wonderful to do creative writing. Haiku and free verse are so very freeing. Both can lead you to your wabi sabi.

Since you have CFIDS, what inspires you to write these days? Is it different than before you got ill?
My inspiration for writing hasn’t changed. As I said before, I write for the joy of it. I always have. I rarely write about being ill, although sometimes I do. I write about whatever seems to push itself into my mind and demand a hearing. I write funny and I write sad. I write sexy and I write about loss of sexiness. I write about other people. I write about myself. I write about aging. I write about a teenager’s loss of innocence. And I write about the sea. My body may be trapped, but my mind still runs free.

Do you have any advice for people (poets or otherwise), reading this?
I would first say never put off the things that are really important to you. Nobody knows when life is going to throw a curve ball. I left a secure, well paying job to make the boat trip I write about in Sea Trails. I suppose I could’ve waited but something kept urging me…’do it now’. I’m so glad that I did.

If you do get stonewalled, once you grieve your losses, which is important to do, find something, no matter how tiny, that give you happiness and do it. When CFIDS first hit, my mind was a mess. It felt in many ways as if I’d had a stroke. I couldn’t think. I couldn’t remember names for things. I couldn’t remember something as basic as how to make a sandwich. That doesn’t even take into account the incredible muscle limpness, the dizziness, inability to keep my balance or the nausea that made me throw up every day for the first year. Right now, my hands are so weak that I have to write a few lines of a poem I’m working on, stop, put it aside for a while, then start again.

In 1999, I met a poet on the CFIDS forum shortly after I’d begun my first attempts at free verse. She’d taught herself basic html and designed her own website from scratch. My first reaction was, ‘it’s impossible for me to do that. My mind is too shot’, but I found a site that gave html instructions and printed them out. It took me three months to learn what I could’ve learned in 3-4 days in the past, but I did it.
My last doctor always reminded me that I may be a tortoise now, no longer the hare, but that the tortoise won the race and never forget that. I would repeat that advice to readers. No matter what roadblock you run into, find a way around it. If you run into more roadblocks, create a new plan. Never let anything stand between you and your pursuit of something you love.

One last question: With all of the poetry books for sale right now, what makes yours unique?
I like the fact that my book tells a story. I think that’s fairly unique. The reader can travel along with me by way of poem, log notes and charts on my trip. I think most people have a sense of adventure in them, even if it’s not an urge to go to sea. Also, the book tells the story, in counterpoint, of the deteriorating relationship with my partner on this trip. So, we have two stories progressing at the same time. My feeling all along is that this is a cross over book, one that will appeal to nonpoets as well as poets. I’ve had this feeling confirmed when people who don’t even read poetry, much less write it, have read the book and tell me they can’t put it down. Poets have told me the same thing. I love it when poetry can move over to reach a wider group of readers.

***
Thanks, Pris! And now, here she is, reading a selection from her book, Sea Trails:


Sea Trails by Pris Campbell can be purchased directly at http://www.lummoxpress.com and clicking on the book cover. It can also be purchased on Amazon. If you’d like a signed copy, please buy through Lummox Press and instruct us that you want it signed.

After you click on the cover at Lummox, you’ll get a paypal button.

Please feel free to discuss, ask questions and leave comments below! Thank you for attending this stop on Pris' book tour!

Struggling

It feels like all the improvements I've made have vanished. I've been practically bedbound for the past week. I've had a lot of stressors the past couple weeks and still have not recovered from the intense round of antibiotics to treat the staph infection. As Murphy's law would have it the infection started to come back late last week prompting a return to the podiatrist. The podiatrist noticed the big toenail on my other foot is starting to get ingrown. Because of my history of developing staph infections quickly he said "we need to pre-empt this one" so I'll be having minor surgery to remove part of my toenails on both toes again. I'll have the surgery on November 30th almost 1 year to the day that I had the last toe surgeries. It's quite discouraging having to go through this again but I can't afford to risk yet another staph infection.

One week ago I was in bed with a mild case of vertigo. I've been having little episodes ever since. Plus at times I feel on the verge of having some sort of seizure. It's a strange feeling. I feel like if I let go I'm going to go into full on vertigo or start having seizures. Both frighten me.

I'm continuing to lose weight. Luckily I had gained a bunch of weight-probably 35 pounds. I needed to gain 20 of those pounds. I've probably lost almost 20 pounds now. I don't have much of an appetite so I'm having to force myself to eat. I feel nauseated most of the time but luckily its rather mild.

I don't know what to do. I can feel Eeyore sitting on my shoulder telling me "what's the point of pinning my tail back on for it will just fall off again." I need to speak with my ME/CFS doctor but it costs a lot of money. Until I get approved for SSDI I'm in a tight spot.

So I'm feeling fairly weepy. I don't know how people who've had this disease for a long time hang in there. I hope I can hang on. Dr. Nancy Klimas at the end of the following video that "now is the time not to give up hope":

http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv

For awhile I hung on to those words but with the current decline in my health I'm finding it difficult to hang on to hope. I'm frightened of what's ahead. I'm scared about possibly having a retrovirus like XMRV. Mainly I'm frightened because I'm developing new symptoms and I have no idea what to do.

I've decided to stop the LDN for now just in case that set something in motion. I doubt it but just in case. I think all the stress of late has done a number on my body. My main complaint has to do with my brain. It just doesn't feel well-almost like its swollen somehow. There's the headaches, the sound sensitivity, the smell sensitivity. I'm tired of it. I feel trapped in it.

I'm trying to find my way back to a sense of peace but need new tools. The ones I have aren't working right now. I long for a sense of community but maybe I'll never have that again.

I was doing some thinking about when I got sick. The most serious and debilitating symptoms showed up in 2007 but in 2005 I did acupuncture. The acupuncurist had me do a 24 hour saliva test for adrenal functioning and when the results came back he said to me "I'm surprised you're even functioning." My adrenals were shot in 2005 but I didn't take the test seriously. I was so engaged in writing my dissertation, working, etc...that I didn't have time to not function. It has made me wonder if I've been sick longer than 2 years. Supposedly XMRV likes cortisol so high stress causes it to replicate.

I'm getting dizzy so will have to abruptly stop here. I just wanted to give a little update. If anyone has any suggestions feel free to suggest.... :  )

Oh, The Whittemore Peterson Institute has the questionnaire up on their website. Anyone in the world can take it. I would encourage everyone to fill it out as all and any information is useful. Here's the link. Scroll down near the bottom of the page and you will see it.

Trolls

I was forwarded this article today regarding trolls. I thought it might be helpful in case anyone else  finds themselves in this situation. I found it quite helpful.