Letter to No One

I'm having a really hard time of it today - & I've only been out of bed for an hr - in all honesty the deck is rather stacked against sanity today. Its cold, grey, & raining; there are other things going that add to mess but those are not things to be discussed in a public forum.

Part of me knows it will pass but - it always does - in the mean time my brain is filled with negative & hopeless thoughts. Things I'm always aware of but that my positive brain is generally able to ignore - or more successfully distract myself from - for now I'm alone in a darkened room listening to the clock ticking & watching the rain drip down the window.... it sets quiet the scene actually.

I haven't really worked in about 5 years - since I really started getting sick, but that's another story - so as you can imagine I don't have much in the way of money. You make due, & you constantly learn how to make do with less & less. You are also forced to lean on those around you. Its a horrible feeling. The last thing you want is to be a burden to those you love - which thanks to the depression you already feel like any way. They try to offer helpful advice & encouragement - "If you had a car you could..."; "If you had a job you could..."; "Everybody feels like that sometimes..."; "It's not as bad as you think".... All of which makes you want to either pull your hair out or throttle someone - but does NOT make you feel any better, more often than not it makes you feel considerably worse.

So you pull away, you don't want to ask for help, you don't want to talk or see anyone, don't want to fill their time with your pain & problems. Unfortunately this only isolates you further giving the depression a stronger, deeper hold.

It's a vicious cycle isn't it. I've circled the drain more times than I could ever begin to count. For me it first started in high school, & I can remember episodes from all stages of my life after that - although it took several years to figure out (ain't hindsight grand). By now I'm VERY familiar with the signs of depression; I can see it coming a mile away, I still have NO idea how to stop the wave from crashing into me though. Postpone it sometimes sure, ultimately though all you can do is wait for it to be over - or for some miracle to pull you to shore.

One of the biggest regrets of my illness is the damage done to my friendships. The more sick I got the more I withdrew from people. Sure I'd come back from time to time, emerge from my cave, show traces of humanity - but all in all I haven't been a very good friend. One of the reasons this is all going into my blog is that I knew i needed to get it out. I thought of the people closest too me; tried to think of the people who I felt I could talk to, only, no 1 really came to mind. They all have busy lives; families, children - something else it feels like my illness robbed me of. (If any of my close friends read this I truly hope you don't take it personal, there is NO ill will attached to the thought.) I can't bring myself to bother them - I suppose there's also the fear that I will make the effort, reach out, only to be ignored because they just don't have the time. Sending messages asking for help, knowing the message was received, & then having weeks go by with no response... kind of leaves you skittish, even if you understand the "real" reasons.

If you have or have ever experienced depression you know exactly what I'm talking about. If you haven't there's probably nothing I can say to help you truly understand. Again I don't mean for that to be insulting but in my experience trying to explain to someone who has never lived it is like talking to a wall - only the wall can't talk back & (intentionally or not ) insult you. I've lost track of the number of times I did try to talk to someone, try to explain, try to get help... more often than not I felt worse after the attempt & decided that it was better not to try for help if that was the help I could expect.

I know they didn't mean to make it worse, didn't mean to hurt me; they thought they were helping. But knowing is only half the battle & knowing dosen't make it hurt any less.

Illness & depression are be different for everybody, some are stronger & last longer or fight harder, while others lose the fight far sooner. For me the result of years battling depression & years of illness has resulted in extreme isolation not just friends, but from the world. It finds me in a position I wish I could escape; trapped in a pitch black cave feeling, slowly, along the walls in hopes of discovering some way out. All the while trying to convince yourself not to give up searching, & wondering "how long I can last?"

I have a feeling there are a lot of people out there who can relate my story, who can relate to the sadness, the pain, the fears. Others might wonder why I would share such personal - & depressing - information; the answer is, because I know there are people out there who can relate & maybe knowing that I'm out here too will help them, even if only just a little. Maybe, by sharing, I can help them to feel less alone.

My Name is Rachael

My Name is Rachael, & this chapter of my story begins when I started experiencing depression, fatigue, joint pain, & brain fog; symptoms at the time I thought were Lyme's Disease... little did I know...

Over, roughly, the past 5 yrs I have been treated for &/or diagnosed with Fibromyalgia, CFS, Peripheral Neuropathy, & Depression; not counting the number of illnesses & conditions that were considered & discarded just to get to that point! Each of my "conditions" was ultimately researched by me & then brought to my Dr's; because they were clueless & completely UN-helpful - 1 even tried to put me on cholesterol pills when I went to him for joint pain, while proceeding to completely dismiss the actual list of symptoms that had prompted the visit!

I have never been a fan of "fake food" or "pill popping" there was even a time I considered myself to be healthy, fit, & active! I tried on & off over the years to eat healthy - switched to whole grains, avoided sugar "alternatives", Tried protein shakes, flirted with juicing, vegetarian & veganism; but nothing I tried made me feel better in any way. I would get discouraged, assuming I must be doing something wrong & either give up or let someone talk me out of it. Like so many people out there I knew that I should eat better, knew that I was hurting myself by not. But those brownies looked SO good & surely 1 Big Mac & fries couldn't do that much damage, could it?

Given my record of struggles its not surprising that when I got sick it didn't take very long fat all or me to become so tired & so sore that nothing mattered any more. I stopped caring about eating healthy or exercising; I was more than willing to take pills if only they would make me feel better, give me my life back. Unfortunately, there was no magic pill. No one understood Fibro, where it came from, what caused; they barely knew what it was let alone how to treat it. To treat my pain & fatigue they prescribed me anti-depressants.... which did nothing for the pain or the fatigue. They did make it impossible to wake up in the morning & they did remove any & all sense emotion. I could try another type or a different dosage or course; but was the "gain" worth it? Seeing as how I wasn't actually seeing a gain I decided no & gave up on the anti-depressants.

Time passed, I didn't seem to get better or worse for several months. Then all of a sudden i developed a new symptom. It started off slow, my hands & feet were more sensitive, holding things & standing became uncomfortable. A month later standing was painful & my hands & feet would tingle & burn. I assumed it was the fibro & there was nothing I could do about it but soldier on... until I happened to see a link posted by a group on Facebook, the link was about Peripheral Neuropathy - nerve damage. Some people accept this as simply being part of fibro, but I wanted more. I wanted to understand why. Why all of a sudden was I experiencing this new pain? What was it? What did it mean? So I began to ask question & search the web for any clues.

Once again an article posted by a friend on facebook offered up an answer. not just any answer but the first real glimmer of hope I'd seen in years. Gluten Intolerance. 

I'm only just starting out on this new journey; but already diet has taken on a more important place in my life than ever before. Every single symptom I have suffered over the years is linked to CD. Most I never would have thought could have anything to do with gluten - after I figured out what exactly gluten was. The first hurdle was knocking down all the falsehoods surrounding GI - both for me & my family. The more I read the more I feel like I just stumbled across the Yellow Brick Road. I truly believe that giving up gluten & taking my diet back to nature - away from boxes & cans - is the key to health.

Although the exact solution is different for every person, for me personally 1 thing stands out above all others; changing the food you put into your body WILL change your life. You cannot depend on Drs to find the answers for you & you certainly cannot depend on them to suggest that something as simple as food could solve your problems. Modern food is toxic. The snacks & treats we love so much are killing us. The Diet drinks people guzzle down believing they are doing themselves a favor are not only making them gain weight, the chemicals in those products are actually KILLING BRAIN CELLS!

Everything I post is about my quest for life; it's about being happy, being healthy: about taking your future into your own hands, learning about your ailments, & learning healthy treatments for them! I welcome advice from people with more knowledge & experience than me & I look forward to where the journey will take me. That's not something could say a month ago :)

Sweet Snacks

I have long been a sugar/chocoholic, I've alternated between hating this fact & not caring at all; at the moment I'm somewhere in between but leaning more towards leaving fake processed sugars behind. In the mean time I tried a number of GF snack brands with mixed results.

In order of best to worst here are 5 from this past week.

1. Made in Nature - Tree Ripened Plums

These are hands down the best thing I have ever tasted! I bought them on a whim, I wanted to have something healthy in the house to encourage me to eat, & snack, smarter & holy cow did it work. I willingly passed up chocolates & cookies & grabbed these instead. My only regret is that I ate them too quickly! Next time i get 2 bags... or maybe 10....

2. Glutino Gluten Free Dream Cookies - Chocolate Vanilla Creme

I was so thrilled with how these tasted I had to let my roommate try 1, he was shocked they were gluten free. They might be slightly less creamy than oreo's but it's been a long time so I'm not even sure about that. Either way these are absolutely fantastic!

3. Glutino Covered Pretzels - Fudge

 

 

Chocolate covered pretzels are 1 of my ALL time favorites snacks & I was THRILLED with these, they taste exactly like "normal" chocolate covered pretzels. So good I would never otherwise know they were gluten free! 

I have to say that so far Glutino comes in right with Udi's for my go to gluten free brands.

4. Schar Cocoa Wafers

Wafers of many flavor choices are another fav snack choice of mine. I like that they are light & crispy - it somehow makes them feel... less bad for you... lol. These weren't amazing, they were ok. I'm not certain yet if I would buy them again but there's a good chance I would. The wafers were nice & crispy but the overall taste was very muted. Sill the chocolate flavor not being strong enough is my only complaint about this product & I would suggest that its worth trying for yourself.

5. Annie's Cocoa & Vanilla Bunny Cookies

I was a fan of Annie's products long before I knew what gluten was. That being said these left me feeling underwhelmed. It was only just yesterday during my continued research that understood why. These cookies are made with rice flour, which I have learned tends to give its baked goods a gritty feel. 

The cookies weren't bad. The chocolate flavor was good & the cookies were crisp. It was only the grittiness of them that turned me off.

I've tried a few other snacks of the salty or none sugary varieties but I'll leave that for another post.

Glutino BBQ Chicken Pizza

Last time I went to the store i picked up a bunch of frozen food options to test out. Among them was a Chicken BBQ Pizza with a Brown Rice Crust made by Glutino.
                                                 

 

I LOVED it! I have nothing bad to say about it at all. Just lay it on a cookie sheet & ur good to go. They warn you on the box that ovens vary & this is a good warning. It takes 30min to cook on a recommended heat of 375. I set the timer to 20min & when I checked on it the crust was already getting too dark for my tastes so I rotated it, & turned the temp down to 350. Even so I ended up taking it out 3min early. I'm SO glad i read all of the instructions :)

The crust was crispy, without that break your teeth feel to it! And the BBQ sauce was awesome! There was a thick layer of it - they did not skimp on cheese either - & the sauce was both sweet & tangy.

It was just the right size, when I was done i felt satisfied - with just enough room left for a little chocolatey goodness to round it out the meal - because of course no meal is complete without chocolate :)

I almost forgot to mention the nutrition label! This little gem has 14g of protein! How awesome is that? There are only 41g of carbs & 25% of your calcium needs - which I'm paying close attention to since I have reached an age where I am no longer growing new bone & my Dr pointed out that I am at a high risk of osteoarthritis...

The pizza does contain eggs & milk, & may contain soy. I am lactose intolerant - or I am now any way - but I have noticed that for me personally small amounts seem to be ok & I have so far suffered no ill effects.

This is most definitely going on my list for next time!!

Adventures in GF Shopping

The Adventures Continue: Level 2 - Erie, PA
Begun March 2013

When I first began my GF journey I was living in assorted parts of New Jersey, shopping primarily at Shop Rite. (I did try the local Walmart but they didn't have a GF section & the employee I asked was so rude he was borderline hostile!) Where I am in Erie there aren't any Shop Rites so it was back to the drawing board - or the internet in any case :) I found that there were 3 options within acceptable distances from the house (because lets face it we spend almost as much on gas to get to the store as we do buying the food!). My choices were Giant Eagle, Wegman's, & .... Walmart. 

 

(Just 1 more example of how "Special" the Walmart experience can be.)

Needless to say I was less than eager for a repeat of my previous visit to a Walmart, however it is very close to the house & a preferred shopping option of my much beloved roomie :) It has taken 1 month & 3 separate trips but we are beginning to locate GF options in the Walmart. We have yet to locate an actual Gluten Free section, but randomly interspersed you can - if you look REALLY carefully - find a few items. On the whole it has proven a headache & half to shop for GF items at Walmart; also the fact that they mix everything together rather bothers me - do they not understand the concept of cross-contamination? (on a side note, is it just me or does anyone else feel like GF are located near all of the bakeries? - I swear I have to walk through walls of baked goods each time I go shopping!)

(I don't have permission to plaster my roomie's face across the net so I "borrowed" this image from photobucket - we LOVE the beach; but she wouldn't be caught dead in pink.... lol)

My roommate is BEYOND amazing, I could not ask for a better, more understanding (read Patient - with a capital "P") friend! She asked where I would like to try next, & pointed out that Wegman's was likely to have the best selection (even though it's the most expensive & farthest from the house) of the 3 options. SO off we went, into the wild blue yonder...... 

I've been sick for a while & unable to work so money is - well non-existent for the most part, although I do qualify for $200 a month from SNAPS (aka food stamps with a snazzier name).  I think most people would agree that Wegman's has a reputation for being expensive, worth it from what I'd heard - but "worth it" only gets you so far on a limited budget. In the past I avoided the temptations of Wegman's, but I did NOT want to drag my friend all over tarnation in search of the elusive gluten free beast so off went, again. lol.

Additional cost aside, can I just say i LOVE Wegman's! They have multiple aisles of Gluten free food! You get to choose from more than 2 brands!! Also the Wegman's brand pancakes are really tasty :)  Most of the brands they sell are new to me so there is lots of trial & error in our future - I will attempt to share as many of these experiments with you all as possible. That is assuming I don't fall victim to the dread Mind Killer (also known as memory fog)!

(This is a demonstration of my thoughts being lost in the mists of Fibro Fog - many of you understand this all too well)

Now even though I love Wegman's, Giant Eagle is closer to our house - & as previously discussed, cheaper; so we have also checked it out in hopes of scoring a few items cheaper whenever possible.  Sadly options are limited (read pitiful), we couldn't even find my Coconut milk! 

When it comes to GF grocery shopping in Erie, PA I rank Giant Eagle #3, Walmart #2, & Wegman's #1. If anyone knows of other options in the Erie area please share! 



Adventures in Gluten Free Shopping: Level 1 - Burlington County, New Jersey
Begun January 2013

 A blog I read called Gluten Free Mom suggested Udi's as the brand to try, so I took their advice & looked for it at my local store - Shoprite. On my first attempt at GF shopping I managed to stumble across the GF section when picking up some Ensure for my Opa. I found lots of options but no Udi's :(  So I picked up a brand of bread called Ener-G.

I had been told that it was best to toast GF breads as they tended to be rather dry; so that afternoon I eagerly popped my bread in the toaster on 1 (I like my breads very lightly toasted), & proceeded to make a sandwich to go with my tomato soup. Well the Ener-G wasn't bad, it had a good - kind of nutty - taste to it. However, it was SO dry that I soaked chunks of the whole sandwich in the soup & STILL thought the bread was too dry! I was determined to make the best of it though because - at the time - I assumed Shoprite must not carry Udi's - I decided that next time I would use extra mayo & soaked it even longer in the soup as well as experiment with various levels of toasting.

The following week during 1 of my bi weekly shopping trips my shoe came untied - which is super rare with my hiking boots - so i stopped at the end of the fridge section to tie it. As I stand up I realize I am staring at a full ridge display of none other than Udi's! It had never occurred to me to check the fridge or freezer sections!!

And what a magical sight it was, I found myself staring at breads & muffins I had thought I would never get to eat again! I couldn't believe the selections - blueberry, lemon streussel, double chocolate chip muffins... I think I almost cried as i reached in & grabbed the chocolate muffins & a loaf whole grain bread.

 

I store both in the fridge - since that's where I found them. The muffins were AMAZING! They were soft, moist, & wonderfully chocolatey; I never would have known they were GF if they hadn't been labeled as such.I have not tried microwaving or toasting the muffins yet but I've been told that I don't know what I'm missing :) so I'll be giving that a try tonight.

As for the bread, I had bought the Whole Grain Bread which looks & tastes something like artisan bread. It has a light airy center & dark thick crust. I have been toasting it every time i eat it but I just read that you can eat it without toasting it & it still tastes amazing. I also recently found a recipe for french toast with this type of bread! I'm super excited because french toast is 1 of my favorite foods in the world - up there with mac n' cheese! - & a another recipe for grilled cheese! needless to say I am beyond thrilled. I can't thank the people at Udi's enough, I love everything of there's that I try & I plan on trying everything that they have! although this is likely to take me a while seeing as how I'm broke - my mom bought me some of the chocolate muffins as part of my birthday present because I liked them that much!

Any way, if you have Celiac, GI, or just plain want to get away from wheat I HIGHLY recommend you try Udi's, they are now the standard that I compare everything else to!  

It's been a long time since i was able to create a post. I have been sick for several years, each year bringing new symptoms to try & understand. As it stands today I have Fibromylagia, CFS, Peripheral Neuropathy, Chronic Depression, Gluten Intolerance, & Lactose Intolerance.

The Gluten is a new revelation, I'm only just getting started on my new gluten free life but already i can feel the difference! I have read a number of blogs, facebook pages, etc; anything i can find to try & understand. So much of what i thought i knew was wrong & there is SO much more to it than I ever could have imagined!

I plan to post about all of my symptoms/conditions as well as the GF various brands I have tried, anything I think someone else might benefit from. Living Gluten free is a massive undertaking & not to be entered into lightly, or blindly. To live gluten free you HAVE to do your homework, you have to learn what is & is not safe, all the many names behind which gluten hides (You wouldn't believe the things I have found gluten in - like popcorn!).

One thing that was hard for me & for my family is the fact that i am... well an adult (no need to get into the specifics of age), meaning not a child. How did i live for years eating gluten daily without feeling sick from? Doesn't Gluten Intolerance (GI) start when you're a child?

Well the answer is that GI can strike at any age. You can also have GI without being sick to your stomach! (that one was a shocker to me) I met a woman who has what she calls silent Celiac - she went to her Dr for osteoarthritis & the the tests showed that she had celiac! This lady told me that she never feels sick to her stomach when she eats gluten - not even 12 years after her diagnosis. In her case it was her bones that bore the brunt of the illness; although she had also been treated for cancer, which her Dr later realized had been caused by her undiagnosed GI!! I was beyond shocked, it had never occurred to me that GI could damage your bones, let alone cause cancer!

I have learned that celiac disease destroys the villi that line the intestines, the villi are responsible for absorbing nutrients from what we've eaten. So over time as more & more villi are damaged or killed your begins to suffer from malnourishment & vitamin deficiencies. Here is where we encounter another commonly believed falsehood about people with GI. I used to think everyone with celiac was super thin. This is not the case, in fact many people with GI are often of "normal" weight & there are many who are even over weight.

If you're anything like me gluten makes more than 50% of your diet, so facing a GF life was terrifying. If you had suggested it to me a few months ago I would have laughed & said not a chance! It dosen't take long - when you're so sick every day that you're confined to the couch & bathroom - to realize that life without gluten sounds pretty good after all.

In my case I thought that all of the new IBS symptoms I was having were because of my fibromyalgia; GI couldn't have been farther from my mind. Until a friend of mine tagged me in a link on facebook. She had found an article that listed some of the known symptoms of GI & it had made her think of me. The article listed 10 symptoms that could indicate GI; among the symptoms listed were, fibromyalgia, CFS, peripheral neuropathy, depression, & anxiety. Needless to say seeing all of my problems listed together in association with a condition I had never before considered caught my attention.

With helpful advice of some friends - real & virtual - I have been able to start this journey with a considerable advantage; an advantage I hope to pass on to as many people as possible.

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Numb

fire twists

stomach churns

tears

shed & unshed

eyes burn

dreams

fears

silent screams

choke the throat

fingers & toes

tingle, burn

muscles ache

pain consumes

sleepless tears

chill to the bone

hope

fragile bubble bursts

dreams die

empty echoes

fear 

held at bay

sad, scared, sweet

terrible relief

cursed blessing

embrace the void

surrender to fate