Rock and a Hard Place

I couldn't resist this adorable picture of a turtle who got herself stuck between the proverbial rock and a hard place. I'm feeling her confusion and frustration right now. The only thing I know how to do is to keep moving forward one day at a time. So I'm gonna go with that as it's worked before, but in the meantime I need to sort out some feelings.

I crashed today. I reached a point where I could no longer sit up and had to lie down, and the same end-point with keeping my eyes open and keeping awake. Star Trek kept playing and somehow I knew that, but I didn't have the though or desire, let alone the ability to turn it off. And it's not like I had to get up off the couch, it was one small arm movement that I couldn't even manage. I woke myself up from snoring but also couldn't seem to turn over. I had an early day at work today so I'd guess that I wouldn't be up to much tonight, so didn't plan anything, but as usual it seems much more of a wash than I'd planned for. 

I was hoping to do some manifestation work, something positive to direct my thoughts and energies for the future, an organized way of saying "This Is What I Want", and instead I find my mind spiraling with worry. In my monkey-mind's defense I'm worried about BIG STUFF....but it's not stuff I can do anything about right now. And so I've determined that the worry is rather silly. But I still feel it. And I'm concerned. 

There's two major areas that are related, of course, because everything is. 

One is my ongoing health challenges as it relates to my activities and my ability to do them, managing my multiple conditions, somehow finding the energy to continue working, and what's coming to look like an eventual need to apply for disability. I keep saying I'm not there yet but I think that things are happening so slowly that I might not realize that I AM there until after the fact. I don't know. How does one make a decision like this. 

The second is school. How to work enough to pay the bills while I'm doing it, the classwork itself (pretty low on the worry list, actually) , paying for it now that I'm almost at the financial aid cap, and worry over the exertion of school AND work and how it's going to negatively affect my health. Also, there's the fact that I *need* to finish because I know I can't do the job I've been doing much longer...but it's taking so damn long I might be on disability before I can finish....especially if I'm out of money. 

WTF, man. I'm trying to make my life better. I'm trying to stay OFF disability and find myself work I can do....but if I can't pay for retraining then how am I supposed to do it? Can I catch a break, please? 

I'll tackle the school/financial aid issue first because it's shorter and easier to explain. I fucked around. I dropped out when I was young and didn't finish my degree. That's my fault and I get that. Then I went to massage therapy school and all of those loans went onto the total. At the time I never thought I'd want to finish "real college" again so it didn't seem to matter. Massage has given me enough income to live on, but never enough to pay anything back, so I never caught up on any loan payments. (include high medical expenses in there) So when I DID decide to go back to finish my degree, it had been so long few credits counted and I basically needed to start over. (my associates degree in massage doesn't count toward anything, it's a trade and not transferable.) I chose nursing. A reliable field where I could find work and something for which I believed I had aptitude and skill. Six months back at full time school with part time work (I've always worked) I got very sick, again. The worst symptoms I'd ever had before. I was diagnosed with "chronic fatigue syndrome" which is also known as ME (Myalgic Encephalomyelitis) A year later, still struggling with disabling symptoms, I finished my nursing pre-reqs and applied to nursing programs. I got in because of my excellent grades but I declined the admission because of my poor health. If I was having trouble simply making it through an average day, then what business did I have training for a program that expected physical labor and 12 hour shifts? If my brain was foggy, I probably didn't belong in a job where someone's life was in my hands, no matter my good skills and intentions. I had to change my major, again. 

I took a leap and decided on the most logical course based on past credits, more current credits, and personal interest. I went back to biological anthropology and began to set my sights on graduate school. 

Now the money issue. Simply, because of my varied past I am now very close to the financial aid cap for undergraduates. The cut-off is 57,500. I could have sworn that when I checked it two years ago it was 67, 500, but perhaps I don't recall correctly. I can't seem to get an answer anywhere on whether the cap is based on the original total disbursed loan amounts or on the total owed which now includes the capitalized interest. Likely it's the total amount due, which is over 51,000 already. 

So let's say I have 6500 left available to me in loans. One year of tuition is over 7. I have at least two years to go. That's the basics. There is still the need to work to try to cover living expenses, and I won't be able to work as much while I'm in school. If I can't pay tuition I'll have to drop down to part time or take one class at a time while I work at job that is so physically challenging that it's making my health worse. I'm trying to finish school so I can get OUT of my current job like I needed to four years ago. With upper division classes that are offered only once every two years, completing my degree will be very drawn out if I cannot attend full time. 

Yes there are scholarships, but I'm white and have no children so my options are limited. I don't have the extra energy to do civic work, extra projects or essays that are required for many applications. I've already applied for what I can for the year through my school. 

Yes there are private loans. I'm not eligible. I don't have any credit cards and very little in savings (and that usually ends up going to medical expenses or school expenses) My credit is quite poor due only in small part to actions that are my fault. I am a survivor of a long-term abusive relationship and my ex controlled the money. Years later I am still suffering financially because of what he did to me. I can't even get a car loan on my own and that's considered the easiest to get because if you don't make the payments they just take the car away from you. 

Yes, there are grants. Because I've had to work instead of showing low taxable income because of classes, I'm not currently eligible for a Pell Grant. There are CalGrants, and I may receive a small amount that could help, around $1000, but I can seem to get a clear answer on my eligibility. Even though I'm a CA resident, most if the entitlement funds go to students who graduated from a CA high school or did their lower division in CA. Most of my lower division credits are from Arizona or New York. I had to leave AZ and finish my degree here in CA because I needed to get away from my abusive ex. 

So that's the (much longer than I'd planned) summary. I don't think I can make myself write about my health and illness or potential disability right now. I don't have it in me. It's too hard. It will have to wait for another post. 

I do feel somewhat successful though, as making my mind think coherently enough to make sentences out of words has calmed down my emotions. I'll take the small victory, thank you.

Not So Invisible Disability

I had a poor experience today at a free clinic. Although the 2nd year med students who volunteer and run the clinic were mostly fabulous, the doctor was much less so. 

In about 5 minutes he managed to:

not listen to me and barely listen to the student who was 'presenting' my case after taking a thorough and compassionate history, question my diagnosis of Celiac Disease (made in 1996), accuse me of "cheating" on my gluten-free diet, not greet me nor introduce himself, barely looked me in the eye, ask to see my OTC inhaler so he could see what it was then scold me for not using it properly. He didn't hear my primary reason for being there today, never once was my diagnosis of ME/CFS even mentioned by the student (apparently he thought it wasn't relevant, even though we were discussing my immune system. And that's assuming he even knows what ME/CFS *is*), he questioned my weight (which again, is a struggle because I can't really exercise within my energy envelope and heart rate restrictions) , questioned my diet, and then he told me I was having very bad allergies (even though I'd just said that my allergies had been recently treated and that seeing an allergist wouldn't help me) referred me to an allergist and said he believed there was some underlying immune system problem, then walked out of the room without any closure. 

I was able to chat for a couple minutes with the student who had taken my history and presented my case after I saw the doc. (who didn't have anyone else waiting and had no reason to run out of the room like that except that perhaps he was uncomfortable with my case) The student kindly took my contact information in case some referral opportunity came up. They had no sources of cash pay specialists....odd for a free clinic, yes? I'm not sure. The student explained that he was probably reluctant to prescribe a rescue inhaler because treating the asthma could cover up an underlying condition. Ok sure, I suppose I get that. 

Really? You just saw someone with obvious allergy/anaphylaxis issues who says that they have trouble breathing and that some symptoms include swelling of the esophagus. Some practitioners would have a big issue with him letting me walk out of there without an EpiPen, let alone a simple rescue inhaler. 

The student seem apologetic and was sorry nothing else had happened for me. I started out the interaction by stating that I didn't expect a free clinic to figure out all my issues and that I was there for the asthma and for an inhaler. I guess I set my minimum a little too high. :-/

The other issue I had, in retrospect because it all happened so fast, was that all the work over the past six years I've done with my primary physician in AZ, a Naturopath, an NMD, was dismissed.  She went to four years of medical school like any MD, and she even did a residency and advanced training after medical school. The student I worked with didn't even know the difference between a Naturopath and a homeopath. This lack of knowledge and understanding certainly contributed to my symptoms and my diagnosis of ME/CFS being dismissed and ignored. 

By the time I got to my bike I was weeping tears of frustration, anger, and disappointment. I was crying so hard it would have been unsafe for me to ride just then. It probably took about 20 minutes for me to calm down. And all afternoon whenever I thought about this again I would just break down. I think I'm finally calm enough now since I was able to write the above story without a tear. But now my symptoms are so high I wasn't able to go out like I'd hoped for and felt up to earlier. Yes, stress contributes. But it's obviously not the cause. 

I have an appointment next week Wednesday with a doc at One Medical in San Francisco, a medical group of general practitioners (who seem aware of integrative medicine) who will see patients on a cash basis. I'll pay a total of $300 just to see a Doc, so he better be good. 

In the meantime I though I'd share a few photos I've taken of my most distressing symptom, the hives. Sadly I missed taking a photo of the day when my ankles were so swollen that the pressure on the blood vessels cause them to break and I had purple splotchy bruises for a few days. I also missed photos of the extremity swelling at its worst, but I have a couple of hives with moderate swelling. 

Right ankle showing hives, swelling, and painful evidence of a day at work. See the other ankle picture below to compare the swelling. This was taken early on, within the first month of symptoms. 

Both ankles showing purply splotchy hives on the right.

Early on the hives bled together like this covering 40-50%, at least, of the surface area of my skin. I was hot to the touch. 

Most days, with the high doses of palliative meds they usually look like this. 

With palliative meds

Taken on the worst symptom day I had to date.  

Taken on the same "worst day" the only day I've called in to work. I was so sick I could barely roll over to take the picture so I just lifted my shirt and did my best. 

Relatively unswollen ankle for comparison to above

Taken today

Taken today

I don't know why the pictures are all out of alignment and I don't have the spoons to figure it out now. So I'm posting and that's that.

What?!? Sick, again?

Yes. Sick again. In spite of all my efforts to take care of myself, the constant attention to activity and exertion levels, the vigilance,  I still ended up in a flare-up. In retrospect, I hadn't been eating very well. I was going out a lot to eat because it was convenient, drinking more often than I had in a long time. Eating sugar. Maybe not even resting as much as I *could*, although I believe I was resting as much as I needed. I hadn't had flare ups of CFS symptoms, except for short term crashes that I recover from in a few days in nearly two years. And I didn't get the symptoms, the horrible, challenging symptoms I got this time in about three years. I thought I was home free, but now I'm thinking again.

The hives are back. DUM, dum, DUUUUMMM!

heh.

So I was ill after my trip to Sedona. I believed that I'd somehow accidentally ingested gluten and that I was having a reaction. Then about two weeks later, eating relatively normally but not going out as much since I'd just spent money on the trip, I had some Thai food. By a few hours later I could feel the hives starting to break out. They were bad enough that I was alarmed, remembering the three horrible hive attacks I'd had over about a two year period. They got a little better a few days later, and then blossomed again. They kept getting worse and worse. By three weeks I'd had enough. I was freaking out, scared, panicked, and feeling defeated.

I called my NMD in Arizona who's been my doc for six years. She agreed with my theory of leaky gut syndrome post gluten attack and that it was probably causing my immune system to over react. She prescribed a regimen to heal the leaky gut and to hopefully reduce the symptoms. In the past I went on prednisone to control the symptoms, and high doses too, but I still have after effects from the side effects of the last round of prednisone. Edema, adipose relocation, adrenal fatigue, and about 40 pounds that won't budge. I chose to try and weather this inflammatory experience without immune suppression.

Here is a picture of how they looked when they were pretty bad, but not necessarily at their worst. About 40% of the surface area of my entire body was covered in flowery hives just like this.

The red outlines indicate the outer limits of the hives and only look like this after antihistamines to reduce the swelling and hydrocortisone cream to help the itch that made me bonkers.

Every morning I'd wake up and spend about 20 minutes scratching which seemed to burn out the little mast cells and keep them from pumping out more histamine.

They got worse with work and other activities as well as with certain foods. So I put myself on the safest diet I could, and for three weeks now I've been on an anti-inflammatory fruit and greens smoothie diet. There are a few add in I'm beginning to integrate one item at a time so I can determine if I'm reacting to it. I've found a couple things my system doesn't like in the process, but for the most part the diet, along with the treatment from my doc, has helped a LOT. How else would I make it through three weeks on a damn smoothie diet?!?

So this second pic is what they look like more now after a day of work. Smaller, more red, and bumpy. I start the morning with them on my torso and then the morning ones fade away. By afternoon they are starting to come up again and they appear more on my forearms, hands, lower legs, and feet. before they'd last about three days, now 1/2 to one day. And they're not as itchy. Last week after a couple days rest I was nearly hive free. Then one day back at work and I'm all worked up again.

At one point recently there was so much swelling around my ankles because of the hives that not only was standing and walking painful, my skin was covered in bright purple splotchy marks from broken blood vessels. It took them days to fade away. :-/ I didn't get a picture. I think I wanted to forget.

BTW, it's been nearly six weeks that I've had hives. Every day. At least they're not so much on my face anymore. When they're on my lips and eyelids is the worst....second only to a sensation of swelling in the throat. That pretty much sucks.

Obviously I'm having terrible inflammation and keeping it down is key. I haven't been very far from my blender in three weeks and I haven't figured out travel quite yet. I'm going to be pretty restricted in my diet for some time and I'll need to make it work somehow.

There's another symptom which I'm not really comfortable putting out there quite yet, but I'm beginning to suspect colitis, or inflammation of the colon/gut.

I'm tired for now. I do intend to make another post more specifically about my anti inflammatory diet but that'll have to wait. Maybe tomorrow.

Has it been a long time...again?!?!

I'm looking back and my last post was in January, and that even though I decided I'd post more often, that I wanted to get back to it again, I haven't. But there's been a lot going on, and not going on, that has kept me busy. Especially the last six weeks or so. 

At the end of January I took a trip to Arizona (where I used to live) with my current partner, Vick. We spent four days in Phoenix attending Southwest Leather Conference southwestleather.org After that we took about a week and visited Sedona as well as Jerome, AZ and the Grand Canyon. Here's just a couple of pics from that trip.  

Vick and I after the contest at SWLC Phoenix, AZ

Caduceus Wine Cellar

Jerome, AZ

Amitabha Stupa, Sedona, AZ

Sedona, AZ

The official Grand Canyon Shot

The largest crystal skull I've ever seen!!!

Bell Rock Sedona, AZ One of my favorite places in the world

So during the time in Sedona....wow, just remembering the trip I could make several blog posts about it. About SWLC and the Dance of Souls too. It was amazing. I really stepped into my own. I grew. I handled responsibilities like I'd been trained to do it. And I have been, for years. And that was my chance to show it. :-)

Anyway, during Sedona I got sick. And by sick I mean a little CFS flare up, but lousy gut symptoms that I've usually associated with Celiac Disease. For days I had trouble. I can back from my trip exhausted and sad, even though it was a good time. 

I think I had to fill that in as a part of the past in order to bring things current. I got sick...and I'm still trying to get better more than two months later. Next post.

The Homemade Tofurkey 2010!!! with pics

http://chefinyou.com/2009/11/tofu-turkey-recipe/

The original recipe is above, but I did do some of my own things along the way to make it my(our) own.

 The raw toasted GF bread with the pan of onion, celery, seasonings, etc.

apple, almond, goldenberries, veggie broth, and seasonings measured out.

The seasoned tofu after draining with the middle scooped out, ready for the stuffing to fill it.

Stuffing filled flipped tofu mound on the baking pan.

Lightly basted tofu breast :-) ready for the oven.

The mostly cooked tofurkey with stuffing surrounding the mound in the oven.  It started to smoosh and I added the stuffing to help maintain the integrity of the shape. We're calling the 'cracks' in the form 'stretch marks'  ;-)

Not Quite Flu-ey

But sadly I think I might be getting there.  I've had strange muscle soreness in both quads over the last two days and zero physical or mechanical use reason for the soreness.  The *only* thing that may possibly have affected it is that where I was housesitting was a single story and my room here at home is on the second floor.  But it's not like I'm doing stairs or something, I'm using the same precautions I always use and I'm not taking the stairs any more often than usual. 

At work today I looked up the muscle weakness association between the quads and the small intestine meridian according to a Touch for Health book. www.touch4health.com A small intestine involvement isn't unusual for me, considering Celiac Disease, but I don't understand why now.  Even since the incident in Sedona where my legs gave out on me and I had PEMS for 5+days...and it was almost 2 weeks til my legs felt completely reliable, I've been super cautious to stop before overexerting.  

Tonight I feel weepy, have the teeny beginnings of a sore throat, and my cervical nodes are swollen.  All of this points to feeling flu-ey, the collection of flu-like symptoms that is pretty common...

sigh.

There are two variables that I see at the moment.  I just finished my week long course of colloidal silver on Sunday, also the same day that I came back here to the house after about 10 days housesitting.  While I stopped in here to take a nap, I wasn't here for more than a couple of hours.  Is it the silver that was helping me to feel that much better that two days later I'm feeling icky?  Is it the environment here? the smoke?  

I'm only here until next week Friday, and I'm going to Tucson this weekend for BCD.  I can pick up some more silver tomorrow and resume that Tx to see if it help me improve again.  Part of me is really hoping that with the move I'll experience some sort of superb improvement in my health status.  Really, I'd be ok with less than particularly superb, but I'm going for something better.  I've never felt as poor in my health as I have this past year.   I am particularly sensitive to my environment, what if there's some mold here that combined with the smoke has been negatively affecting my health?  And to note again, while my health has been on a slow but steady decline with spurts of remission and symptoms for many years, there was a significant increase in symptoms when I moved here to Phoenix.  That's when the severe hives got so bad I needed prednisone. I don't seem to have huge improvement with 7-10 days away from Phoenix in California, but perhaps that takes longer.  I won't know until I move, but there is that possibility.   I moved in September of 2006 and the terrible hives started in January of 2007.  

Some thoughts. 

So I'm putting myself to bed early.  Night all.

You know what?

You know what? Sometimes I forget that as an adult working a job and going to school can be a really challenging thing to do...and nursing prereqs aren't the easiest classes either. Sometimes when I'm feeling frustrated, I like to remind myself of this.

And you know what? Living with an auto-immune dis-ease, even if the Dx has been with me for 14 years, it impacts my life several times a day and that can be a challenging thing too.

And you know what? Living with a misunderstood, socially dismissed, medically challenging, and personally limiting chronic illness is a pretty hard thing to do too.

And you know what? I do it all.

And most days I do it all with love and grace, and tears, and frustration, and joy, and with sincere gratitude for my life.

And you know what? I get As. I have friends and lovers who appreciate me, I have family who loves me, a Tribe that supports me, a super cool motorcycle named Lucy, and I have this amazing body suit that temporarily hosts my beautiful and powerful Spirit during this turn of the wheel that is capable of the coolest sensations like pain, anxiety, orgasms, and of course, sneezing.

I am alive.
Thank you Universe, for my life. I think I'm doing a damn fine job.

Thank you Goddess for the opportunities to serve you, myself, and others. I am blessed.

Thank you, thank you, thank you.
Love, love, love. <3
Sent from my Verizon Wireless BlackBerry

isolation and anger

Sometimes I'm too tired to be angry. Sometimes I simply don't care, because I know it's not going to change anything. And sometimes I'm so pissed I could spit...and sometimes I do.

So often taking care of myself means staying home and a lot of time by myself. When I'm home and in my chosen space with Switch, then it's sometimes ok. This week, and through the 19th, I'm housesitting. Not too bad for the money, but it leaves me out of my element, out of my routine, and without access to regular comforts. I find comfort in simple things like my sheets and blanket, my pillow, my art on the walls, and there's no substitute.

I got my diagnosis, for whatever it's worth. I guess it all official or something. I have ME/CFS. I have chronic illness that very few people understand. Someone told me, or perhaps it was on some facebook status, but it was within the past few weeks. To paraphrase, For those of us who learned young to put others before ourselves, Universe will find a way to make us pay attention to ourselves. Yeah. I got that. I'm paying attention now...can I feel better soon, please? So not only did I wind up with 2 chronic illnesses, I managed to get weird ones. At least CD is becoming more known...but I don't think there's a more misunderstood, or a more underestimated or dismissed condition than CFS. No, it's not threatening my life, today. But it is killing me. Every action, every exertion, every expenditure makes me worse. Activities cost more, pain hurts more, and recovery takes so much longer.

This is so difficult to describe. I've found it hard to feel heard and understood, even by my doctor. I was explaining to her all the changes I've made in my life, to slow down, taking an online class, shortening my work hours, building naps into my (most) daily schedule...and she said something like, "wouldn't that be nice, to be able to nap everyday." Fuck, I mean, come on. I've had friends do it to, without meaning to hurt me, I'm sure. I was attempting to explain the very real symptom of emotional lability...in short, when I'm tired I get cranky, weepy, everything hurts more, feels deeper. Yeah, that happens to all of us, I know that. I know I'm not unusual...but does it happen to you after 5 hours of regular low-intensity ADL? Probably not.
And learning disabilities are not uncommon. But do yours get *worse* as time goes on? Daily and over months? Probably not. Do you loose the ability to pronounce words, or to string words together into a coherent sentence?

I save every bit of energy I have. I park as close to a store as I can without feeling guilty that someone might need it more than me. (It used to be my habit to take the second closest spot available...sometimes leaving many closer spots.) I've decided that if I have a flare-up that's anything like last season, I AM going to ask for a gimp parking pass...at least for school. PRN. Dunno how that works, but I'm assuming I'd need at least a Drs note. I take elevators and escalators when I used to take the stairs, and sometimes I rest between my car and class. I arrive early in case I need more time to get there. I will load myself up with groceries because taking more then one trip is more effort. I spend weekends in bed, my feet up with edema...but still trying to get schoolwork done, trying to stay connected with the outside world. The new computer will be helpful and more reliable.

And that thought brings me back to where I started. Taking care of myself means staying home, and friendships and relationships are suffering. I don't feel like I have much support of my community because I am not able to go out as often as I'd like. Yesterday I was wasted, wiped, and I needed to be in bed at noon...but it was 5pm when I crashed in the Whole Foods parking lot for about 30 minutes so I could go to coffee at 7. It was too far to drive home to nap and I needed to see people. I also needed to be sleeping and resting, and feeding myself better. But I couldn't manage to put myself to sleep in the afternoon...and the main reason why? Because I'd be alone.

When I'm "normal" tired, then bed is a relief, but when I'm over tired, wound up, and anxiety levels are high...then I get afraid to be alone. I eat sugar and drink caffeine to try to keep myself going, which only hurts me more. And I'm already alone too much.

And when I'm wound up or anxious, I get pissed off about it. I get angry, I feel denied an active life, I feel like I've been denied the joy that comes from healing others because *I* need so much attention. I feel really sick of myself, and thoughts get uglier...let's just say I dont' practice the most positive self-talk during those times. I seem to get a bit of the teenage angsty "nobody understands me" crap going on. But the adult in me says I don't feel heard or understood.

Breath

I have it.  Deeply felt and filling.  I am loved.  There is an edge though, sometimes raw, vulnerable, and exposed, but so very real. The more I have felt the pain of loss and grief, then the more capacity I have to love.  I remember this as I give thanks for the pain and discomfort of grief.  I remember that in service and surrender there is pain and there is love and that it is all the same.  And that it's natural for this to be confusing to the rational mind, and so I let the rational go and allow the emotional to BE. 

I haven't had much time lately to write as much as I'd like and I know that's a common statement. But when life gets busy there is more to write about and less time to do so.

My health has been a bit better even with all the work I've been doing.  I'm making it.  This is good.
I have been learning and growing as MO and I have worked together to develop this presentation and to produce this event.  I feel blessed for the experience and I know I am on my path.

I started my application to USF and when I have a few minutes to visualize I get pretty darn excited.  I'm forming other back-up school plans as well, but they all seem to include waiting a year and taking a few more classes at a CA CC.  The state schools require state residency for application to nursing programs.  CCs don't.  Either way, my move next May is on. :) As I continue to develop relationships here I am more aware of what I will miss.  And the pull to be with my Tribe is stronger.  I think an essential part of this process IS feeling comfort with living here.  When all I felt was distance from the community and dislike of the desert, then all I felt was 'stuck.' And now that I've reached more comfort with the now, relationships with people and motorcycles that would make life here pretty darn good, the possibility and certainty of moving forward and relocating to SF is more real.

I'm back in therapy with the lady I was seeing for most of last year.  I'm only going to go every other week and I'm taking one appt at a time to see how I feel about it all.  I've come so far, and while I like therapy, it's pretty expensive even at the reduced sliding scale rate I have.  I'm a work in progress. :)

I need a new computer.  My drive has been Dx as "bad" and it seems pretty unstable.  However, after a handful of days at the bosses house feeding the cat the computer seems to be running just fine.  I understand that there is an issue with the wireless router at home.  My guess is that it's old and isn't fast enough to keep up with my computer wanting to stream video.  I don't know a lot about routers, but I know that lots of folks have had streaming issues due to the volume of data.  I really want a macbook and I'm saving up for one.  I was going to purchase one as soon as loan money came through for the fall semester, but since the drive is bad I've decided that if I can do it earlier I will.  I'm torn because for $4-500 I can get a pc that will do what I need it to do.  But it's not what I want.  I want something of quality, and I deserve it.  *believing* I deserve quality is also what has led me to the decision to apply to private universities.  And so why would I change that now.  It's an evolving situation and I'll make a decision when I have to.  At the moment I need more cash set aside.  Until then, it's all theory anyway.

I have a Dr appt today with my naturopath.  She's the doc who ordered the blood test that came back positive, but who hasn't done anything with me since.  I'm going officially for a thyroid and allergy check up, but I need to get some more advice from her.  I've put a lot of effort into finding health coverage, and nothing has come through.  The discount plan I found has been unresponsive...perhaps I need to move into call them everyday and make a nuisance of myself-mode.  We'll see how it all goes. It's been 4 months since the positive test and besides a lot of research and personal self-care, nothing has happened to move me any farther forward towards a diagnosis. 

Maybe later I'll have a few pics from Yosemite uploaded.  In the meantime they're all on my facebook.  It was beautiful and I can't wait to go back.  I had a wonderful time with my friend tommy who took very good care of me all weekend. 

Love and blessings.  May all beings be happy.

Celiac Disease

A friend sent me an email asking some questions about Celiac disease.  I understand she is doing a case study for one of her nutrition classes, and like any good student she's using all the available resources, including me. ;)  She asked about specific foods. I spent a good amount of time typing all this up, so I thought I'd share.  If you've ever wondered why I'm so darn picky about my food, or why eating Gluten-Free is so expensive, have a read.

Hi A,
I'm happy to help :)

I bit o background. Most of my knowledge is based on life experience having been diagnosed with Celiac Disease in October of 1996. I was diagnosed based on a symptom picture, response to diet and heredity. My mom was diagnosed a few months earlier with the traditional stomach biopsy. My brother and only sibling also has CD. Since May of 2008 I have been eating casein-free as well. I was still having problems and my naturopath suggested I try to remove dairy to see if I had any improvement. Turns out that a lot of celiacs also react to the casein protein the same way they do gluten. I am also mostly vegan, (regular salmon and maybe 2x per year a few eggs), and I eat a whole food almost all organic diet. Most Celiacs do not. They are what I have come to call 'common' Celiacs who eat a very Standard American Diet except that they subsititute GF foods for what they used to eat. ie lots of bread, bagels, pasta, etc. I also have a bunch of food sensitivites on top of these dietary restrictions including most latex-related foods and I follow an anti inflammatory (arthritis) diet. (basically no nightshade veggies, sugar, alcohol, or caffeine.)

I let you know all of this because I will answer all of the following information as if I were a common Celiac. Meaning, I won't simply say, eeew, bologna. yuck, and move onto the next one. ;)

bologna (and other processed meat products) -rarely are thse actually gluten-free unless specifically stated. Protein is expensive, plain and simple. If it's possible a company will add modified food starch to their product to save money. The starch could be corn, or tapioca, but it's usually not specified on the label. Often flavorings are used like teriyaki, soy sauce, or smoke flavoring which are rarely GF. While most basic dairy foods are GF, anything that is low fat or fat free rarely is. The fat is removed from the product and replaced with starch. Ice cream, cottage cheese, yogurt, sour cream and margarine are suspect.

Lean Cuisine- the only prepared meals I even look at are at Whole Foods or Sprouts. Espcially the diet foods. Same as above, to reduce calories the fat is removed and replaced with starch fillers and artificial flavorings. And soy sauce is not GF, so anything Asian is usually out.

Casserole- Any common market brands like Campbells, etc are not GF. In fact, I have found very few canned soups that are but Amy's and a couple fo othr "natural' brands are GF. Green beans and onions are ok, but any pre-seasoned product is suspect. At a friends house I would not touch this unless they were able to tell me which brand of soup they used and I knew it to be GF.

Cheese food- I actually think some of thse are GF. Velveeta is, but a lot of brands are not. Starch fillers again. In my world it's not real food so I don't go there. No nachos at the movies for Celiacs.

Pudding- I doubt most common brands are for the same reason as the other foods above. I have found a brand (can't recall the name) at Whole Foods that I can make that was safe. Lately, I've made my own using various milk substitutes, unsweetened, chocolate, agave, and arrowroot.

Cola- for years Celiacs were told that caramel coloring was not GF and so we all avoided brown sodas like cola and Dr. Pepper. I've been told since that that information was incorrect. Info on vinegar changed too. Distilled vinegar used to be on the no no list, now I'm told it's ok.

A few words on food labelling. The FDA and activist organizations are working on this. In fact, I just recently filled out an online FDA survey about it. As I understand it to be labelled "Gluten-Free" a facility must pay an independant testing agency to test their product and processing methods for the presence of gluten. It's part of why the foods are so expensive. Gluten can only be present in some small amount measured in parts per million or something to make the grade.
A lot of reputable natural food companies are now opting for the less secure "No Gluten Ingredients Used" with a reassuring statement on the product like, "We at Natural Food Company care about your health. That's why we monitor our process for the presence of allergans and maintain high quality standards." Personally, if I'm familiar with a company and have used their products before, then this is usually enough for me. There is also the vague label of "this product is processed in a facility that also processes wheat, dairy, and tree nuts." It doesn't say how far away the wheat was processed or if it was on the same machinery on the same day, or if they clean the machinery in between products, etc. It's like playing roulette with my gut. Labeling like that is to protect the company from law suits, not to protect me and my health.
The new labels that came out, what, 5 years+ ago, that list common allergans at the end of the ingredients in bold has been helpful. Sometimes I'll read a list and it looks fine, but the end says "Contains wheat and soy." Huh. A few years ago I'd have eaten that. Hopefully the FDA will get on this and there will be some standardization soon.
There are no laws on labeling for alcoholic beverages. Celiacs can't have malt like wine coolers or hard lemonade, or barley beer, and some liquors are processed differently to add gluten. I think regular Cuervo is ok, but Gold is not. Top shelf vodka is ok, but cheaper well vodkas add the mash back in to add flavor. No labels here. The only way to know this is by reading research online.

A few other thoughts. It has been shown in studies (I have no references) that flour from baking stays in the air for some 60ft before it settles. That's why places like Picazzo's Pizza, who offer a GF crust, cannot make their own GF crust in the same facility. It must be prepared offsite in a GF bakery. Processing is key. I've been told that Picazzo's takes care to cook the GF crust not directly on the same surface as the regular crusts. Some places have "allergy pans" for rice noodles and such, but the education of cooks, food prep, and servers is necessary to improve handling procedures. And there's never any guarantee unless I do it myself. Even PF Chang's, one of the first chain stores to have a GF menu, still says eat at your own risk and we're not responsible for your food reactions.

Many Celiacs think it's silly to use GF personal care products. I do not. It' smy believe that once something enters my energy field it affects me, think about muscle testing and kinesiology. No, it might not set of the auto-immune reaction in the gut, but it can still 'stress' my energy and my physical body. I choose to use soaps without oat protein, and shampoo without wheat protein. I read labels on hand lotion, hair coloring (henna), toothpaste, make-up, mouthwash, moisturizing cream, and chapstick to name a few. I also have MCS, multiple chemical sensitivities, so I use everything fragrance-free like detergents and cleaning products.

There are also sources of gluten that most people aren't aware of. Wax on conventionaly grown fruits and veggies, adhesives like the back of envelopes, and Pam cooking spray are a few that come to mind.

Heh. No wonder I'm a little paranoid.

Wow, I really rambled. I hope this helps your class. I enjoy educating about CD, especially someone like you who has some expertise in nutrition and natural foods. Thanks for asking.

light and blessings,
Lauren