Conversations with Margaret

I have been in correspondence with one of our fellow Tarlovians named Margret. I find that all of the information we have shared back and forth may be of service to you. If nothing else, sometimes it feels good to know that we are not alone in this special version of life we have found ourselves in.


Hi Cheryl,
 I really appreciate your blog and also you responses to my comments. Would you prefer me to email you or are the kinds of comments and questions I am asking ok to post on your blog? I don't want to be cluttering up your blog unless you actually want more comments posted.
 
 I had a second recent MRI done this time inclusive of the lumbar region and it showed a second cyst, so I have two, one on S2 and one on S3. Also showed probably "benign" hemangiomas, which are growths, on my lumbar vertebrae, so it is TIME to get healthy with juicing and anti-inflammation dieting. Tomorrow I have to have a bone scan done to rule out cancer. Ugh...I hate having more radiation.
 
 Thanks again for all the juicy information you share in your blog....you are inspiring!
 
 Take care and Happy Thanksgiving!
 -Margaret

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Hi Margaret!
 Nice to hear from you! We are running around getting everything ready for Thanksgiving. You know how it goes...trying to make your house and yard look beautifully manicured as if that is how you naturally keep it all year long! I can't complain of course because I get to participate in the cleaning now instead of sitting on the side lines! Sorry to hear about your 2nd cyst...do you have cysts other places as well? I find it to be common with some of the Tarlovians I have spoken to. I had a cyst in my boob, in my wrist and on my ovary...luckily this diet has taken care of that for me. It is wayyyy easier to get rid of a regular cyst then a Tarlov cyst that is for sure! I am really excited that you are going to give it a try. I promise if you will just commit to it for 1 month you will see results in your pain. I wanted to give you a run down of what I do:
 
 In the beginning I followed the plan from Kris Carr's Crazy, Sexy Diet to a 'T'..which is lots of water, all veggie/fruit diet (mostly raw), no sugar, no meat, no dairy.
 My current doctor looks at things from an allergen stand point. He believes the cyst is a symptom of a breakdown in my system due to a food allergy so he says to eat free range/organic meat 2-3 times a week, no corn, no gluten (can have sprouted bread), no dairy (unless it is raw, unpasteurized). So I combined the two and here is what I do now:
 
 Lots of water, mostly all veggie and fruit diet, organic salmon or chicken 1 or 2 times a week, tofu, agave nectar instead of sugar, no dairy (I drink silk or coconut milk and have sadly bid my friend cheese farewell), no corn, I eat Ezekial's sprouted wheat bread, raw almond butter, watermelon juice, green juice, La Croix sparkling water, no alcohol (this one is really tough for me I had such a bright future as an alcoholic before...now I'll have to find a new dream!). I try and not eat the same thing for 4 days and then I start over (ie chicken one day, tofu the next, then veggies only, etc.).
 
 I know this all seems incredibly overwhelming to you right now, it was for me too. Just remember that you can't become all of the things you need to be in order to live peacefully with TCD overnight...take it one step at a time and give yourself lots of credit. This is more then just changing your diet it is changing your whole outlook on life as you know it, which of course is how you find your happiness from within. You can definitely post everything and anything on the blog...I think it is great for us to have a running conversation actually. I might give it its own post and just put our whole dialogue on there if you don’t object.
 
 How old are you? Where do you live? Do you have any kids? I am just curious..that is the weird thing about computers..you can have whole conversations with people you don’t even know a thing about!
 I am 27 (soon to be 28 in December), I do not have any kids and am still unsure if I want them (plus I am scared that if I had one, labor would bring my symptoms all back...who knows though). I live in the country with my husband Damon and we have a fluffy cat called Max. We work from home running an online school (thank goodness we work from home...I really don't know how someone with an outside job would be able to stay employed with Tarlov Cyst Disease). Well, I am off to do some more work. Sorry if I babbled on too long! Hope you have a fun tofurkey day! I am sooo excited for the journey you are about to begin...it's funny I started my journey around this same time last year. You have no idea what's in store for you!!!!!!!
Peace & Veggies, Cheryl

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 Hi Cheryl,
 
 Thanks for your long email...I enjoy your writing because your personality shines through so clearly! Yes it is amazing how we can meet up on the internet as if we were just leaning over the backyard fence and having a chat!
 
 I am glad to hear your doctor is ok with raw, organic, grass-fed dairy on a light weight basis at least. I seem to need meat, and yes I am very good friends with cheese too. You really made me laugh about the alcohol! I do enjoy a glass of wine especially because it eases the pain, but I have not been drinking much for the last few months.
 
 The Tarlov pain started either around the time of my divorce, with fibromyalgia type leg pains that eventually subsided, but maybe just went underground only to re-emerge 2+ years ago at first as hip pain, then lower back pain, and now also lumbar pain. I asked repeatedly for an MRI for 2 years but only got x rays which showed nothing much except minor arthritis type changes. I did PT, chiropractor, massage therapy, herbs, gluten-free diet, and acupuncture. The pain waxed and waned according to its own indecipherable schedule and was unresponsive overall to any of the therapies tried. The only thing that seemed to help some was acupuncture. When i finally convinced my doctor to order an MRI in September, it showed one Tarlov cyst over 2 cms, which was dismissed by the doctor and the orthopedist I am now seeing. A recent lumbar MRI revealed a second cyst plus four growths on my lumbar spine plus two bulging discs. No wonder I can't sleep!
 
 Today I had a bone scan to rule out bone cancer or bone inflammation. But my pain these past two years is consistent with the Tarlov cysts on s2 and s3. I sure hope I don't have cancer, but even if I do, the juicing will be important. I have done juicing before and already have a pretty good diet, but it could be improved upon by eating more raw foods and juicing. I once cured myself of heel bursitis with a very healthy diet that was completely 100% sugar free for one year. You'd be surprised, or perhaps you know, how many foods have traces of sugar!
 
 This past summer I had part of my colon removed due to chronic inflammation for many years. I hope i am not overwhelming you with tmi! My health woes sound worse than i realized now that i am writing them down. Anyway......I was actually hoping the colon surgery would clear up my back pain!! It did not....actually made it worse. The surgery was supposed to be laparoscopic which is why I got brave enough to do it.....after all, what could go wrong? Well, plenty....they accidentally severed my ureter and then after commencing laparoscopically, had to also cut me wide open. yikes!
 
 I used to have boob cysts too, but not too much anymore. Plenty of fibroid tumors, a cyst on my neck for years, and one on my outer thigh, and a bunch of the soles of my feet! God I sound like a mess! I guess that's a lot, huh? See what you are saving yourself from by getting healthy now?
 
 One important question before signing off: did you have detox reactions from juicing? I felt great this morning but after 2 quarts of juice today I feel achey and yucky. I did so much because I wanted to protect my cells from radiation. I will be doing less tomorrow.
 
 Cheryl, I am so happy for you that you can fully participate in the Thanksgiving prep this year! It is like a miracle, right?! You worked hard and took a risk to try some radically different things....and you are awesomely rebuilding yourself into a healthier woman than you were going to be sans Tarlov! Really unbelievable! I hope I can say the same thing for myself by next Thanksgiving!
 
 Take care and eat a lot tomorrow!
 
 Margaret
 
 PS if you want to post the emails you can. :)

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 Hey Margaret!
 Sorry it took me so long to respond! The work really builds up when you take a 4 day weekend! So, glad you shared your overview with me. I can imagine you have quite the stories to tell! That is a lot of health stuff and it made me so sad for you that you have had to go through these things. It seems like because so many people go through surgeries and ailments these days that the enormity of it has become lost...I am sure it was an absolutely terrifying experience. You must be incredibly strong minded. While I was reading your story to my husband he made an interesting connection between you and all of the other Tarlovians I have had the pleasure of corresponding with that I really hadn’t considered before. Each person I have spoken with has been an educated female with a high stress position (either work related high stress and/or financial stress for being the primary breadwinner in their relationships). When he pointed this out it created a possibility that the cyst itself or the onset of symptoms could be provoked by stress. Which makes sense as there are so many new developments about stress caused diseases surfacing. Could this be one of them?
 
 You tried a lot of different things! I tried all kinds of stuff, too without any results. The weird thing is that when I revisit some of those therapies now they do work. For example, I got an acupressure/lymphatic drainage massage recently and it gave me one of the best, highest endurance weeks I have had in two years. However, I got one of these before and it only made me feel sick and more sore. My theory is that before my body was overloaded with all of the crap I was putting into it (anti-inflammatory, pain pills, alcohol, chemical laden foods, etc) and therefor it could not process anything more than what it was already struggling to process, so in essence I was just moving the crap around. Now that my body is clean and functioning normal the lymphatic massage dumps the toxins and I am able to efficiently process them out, resulting in a marked improvement in my pain. That is just a theory, though. It is interesting that you had some improvement from the acupuncture.. which is similar to the advice I had been given from the lady in Hot Springs about an acupressure massage. Perhaps it is time for me to try acupuncture... something to think about!
 
 In answer to your question, yes I still get detox symptoms. It usually occurs when I add something in beyond what I am already doing or if I do more of something then usual (ie juice). Two quartz of juice is quite a bit...some recommend doing fasts with juice alone for days on end...I don't! I read somewhere that if you skipped a day of eating, taking vitamins, eating healthy, etc. that it wasn't something that could be made up the next day by eating better. Everyday your DNA is replicating and cells are being destroyed and created, if you do not give it what it needs for these processes DNA and cells will be created inefficiently, left to float around and reap havoc. The idea behind my diet is to eat/supplement efficiently everyday so that eventually all of the cells and DNA replications that I make are as perfect copies as I can biologically produce, then after how ever long it takes for these perfect copies to outnumber and take over the inefficient counterparts my body should then be able to heal itself. I am no longer sure what I consider healed though...before the cyst was going to have to be completely gone for me to stop searching for a cure, now healing may mean learning to live in harmony with it (aka totally uprooting and changing your life until you are one of those super health freaks who end their conversations by bowing their heads and saying Namaste...but at least you would be a pain free freak...with a smile).
 
 Well, talk to you soon, Homie!
 Love, Cheryl

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Hi Cheryl!
Sorry it's taken me so long to respond but I have been having a terrible flare up of symptoms and was just going to work then crashing at home and letting all else slide...saving any leftover energy for my two teens. Today thank God or Goddess, I am so much better!! More on that later....

I really want to know more about your online school! Sounds like it keeps you busy so I assume that means it's going well. How great that you can work from home and get do do that with your hubby. The photos of the two of you are so cute!

I wanted to touch base on something you said in your first email about having kids and fear of labor. Really I just want to empathize with you..it feels so incredibly unfair that you should have to worry about that at such a young age! But completely understandable! Do you want children? If so i think if you go natural you would be allright. Unfortunately I had to have an epidural for an emergency c section 25 years ago and then in April of this year another epidural for knee surgery. Epidurals are one of the suspects for Tarlov cysts.....if I had known then what I know now I wouldn't have had the second one. No choice with the first obviously except maybe general anesthesia with all it's risks! Is it coincidence I have 2 cysts? But also you are so healthy now I bet you could deliver naturally and avoid drugs and injections.

Very interesting insight about the Tarlov woman profile of educated and stressed out!! Hey, maybe you could add some questions along those lines to your blog survey? I think you and your hubby are onto something......

And that ties in with why I think i am finally un-flaring and feeling better. Well first I have to confess that I had to stop juicing! :( :( :( Made me very sad to stop but I must have a lot of toxins in me because I felt pretty yucky. Maybe trying to give up wheat and meat again at the same time was just too much! I got caught in a horrid cycle of no appetite, losing weight (I am already very thin), no strength, and severe pain. I had to stop and just start eating anything that I could get down. Sounds weird but it felt like I was dying. I am twice your age so I prolly have at least twice as many toxins to unload. I intend to go back to juicing but much slower this time and with less beets which are potent detoxing agents. I am an Aries so I tend to overdo sometimes! I noticed you are a Sagittarius so as a fellow fire sign maybe you can relate?

Well let me get around to what's working now to help me quell the flare. Eating, REST, self-hypnosis pain relief CD by Anna Thompson, extra magnesium, Wobenzym, short walks outside, and asking for help. Listed in probable order of importance. I am going to start watching comedies as Norman Cousins did to cure himself but can't find any good ones yet! Good belly laughs are supposed to provides hours of pain relief. Pain is so horribly stressful in and of itself don't you think?

I like your theories about creating healthy cells and DNA everyday by what you eat. I think part of why I got so sick or flared was because the juicing ended up almost being a fast, just as you were saying, this is not really good for us. Too harsh on the body. I used to do light fasts when I was younger but only for a day at a time and not usually with fresh juice. I always felt great after, but now i am in a different state. I would venture to say that it's not just what we eat, but what we think and feel that affects how we create and recreate our bodies, our DNA, our cells. My mind has been a toxic dump of fear and negativity. It seems so obvious now these are poor conditions to create health. I listen to the self-hypnosis CD a couple of times each day and like it a lot. It provides several tools to use your mind to relieve pain. I wish i could lend it to you to try out, but you can get a preview on iTunes.

In the midst of my flare I called Dr. Feigenbaums office to find out about sending my records for review and learned that would take 6-9 months so I ended up making an appointment for 12/30 but prolly will cancel. So scary to go the surgery route. I Malay do a consult with Donlin Long to get an evaluation of which of my back issues is causing which pains. I have a lot of burning in my hips as well as butt and back pain, but don't know if that's Tarlov or the other stuff. BTW, my bone San was negative for bone cancer! Yay!

Gosh I am sorry for going on so long here. It is such a relief to talk with a like minded holistic fellow Tarlovian!!! Regular people just don't seem to understand this disease....not doctors, not family, not friends. After all, isn't it just a cyst?

Take care!

Love, Margaret

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If anyone has any questions they would like to ask Margaret you can post them here or send them along to me and I will make sure she gets them. Thanks Margaret for your courage to share your story, the ins and the outs. You have no idea how many people you might help just by sharing...including me.