The Celiac Lady

Things You NEVER Say to Someone With a Chronic Illness

2014-06-23T03:59:00.001-05:00

I have read a ton of different lists people have made of things you never say to someone with a chronic illness. I stole some from various other lists, added some of my own and combined some together. Just a little food for thought! ;)

1.) "You don't look sick" or "you look fine to me".
This was #1 on almost every list I looked at for a reason. It's rude and it's hurtful. I am sorry that my pain is not visible to you, next time I will work harder to look crappier? Really? What are you even supposed to say to that? A few times I replied to the "you look fine to me" with "well it's a good thing my disability isn't up to you."

2.) "I wish"
This means statements like "I wish I didn't have to go to work either," "I wish I could lose weight that easily," "I wish I could take a nap every day..." Do you want to know what I wish? I wish I could live a normal life, finish college, find a job, go out with friends and not miss all sorts of events because I am sick. I don't think this is meant to be hurtful, although to me anyway, it's much more so than "you don't look sick." I think the people that say it are only thinking about themselves and their life. We're human we all do it, but before you speak remember your audience.

3.) "Have you tried this?"
This is just plain annoying lol. Everyone has a cure for everything. But excuse me for taking medical advice from actual doctors and not the stock boy at Wal-Mart. If you think drinking vinegar upside down while being stung by wasps will cure rheumatoid arthritis then please go for it. I am all for some "natural" cures. I have done acupuncture and massage and various other things, but bizarre and disgusting "cures" found on the internet with no scientific backing I will pass on. Thank you very much!

4.) "You should get out more" or "you need more exercise."
If you haven't read something like The Spoon Theory I will try to explain this as best as possible... If it literally takes all the energy and strength you have just to get dressed much-less take a shower, do your hair, makeup etc. you're not going to be going out on the town. As for the "exercise" I would love to walk my dog more, or be more active in general but simple things like going to a concert and standing on a concrete floor for 2 hours makes my joints so sore and painful it takes 4 or 5 days to recover. Naturally I need to pick and choose carefully what activities I choose to participate in if it means taking a week to recover.

5.) "You're not the only one."
"You're not the only one that is tired" or "you're not the only one with muscle pain." I know EVERYONE has pain and gets tired. What makes this so incredibly hurtful to me is it makes me feel like people think I am weak or a wuss. My pain management doctor does pain research and has said that RA patients have one of the highest pain tolerances of any group. Having a specific body part or joint that has been injured is very inconvenient and painful and frustrating. However, it is different than EVERY joint/muscle in your body hurting EVERY day!

6.) "I have a higher pain tolerance so I could handle it better."
This one is very personal because a family member said it to me. I think of all of these this is the most hurtful. Until you have lived with the pain EVERY day for YEARS you have no idea how you would handle the pain. There is a lot that goes with chronic pain too. There are lots of medications, side effects of medications, blood work and imaging tests, anxiety, depression, stress, fatigue, etc so even if the physical pain is something you can handle better what about the rest of it?

I am sure I am missing lots more, but these are the ones I get that frustrate/annoy me. One of the hardest life lessons is to accept you can't control what other people say or do. Especially if that person is someone you're close to who makes ignorant comments. So like I said before consider your audience before commenting or giving advice. We've all done it and we all need to learn to shut up more and listen more!

GFAF Wellness Event Follow Up

2014-06-04T13:09:00.000-05:00

For those of you that missed the Gluten and Allergen Free Even last weekend you missed out on great people, information, food. and the opportunity to network with people living similar lifestyles as us. I wasn't really sure what to expect as far as turnout, but I was pleasantly surprised by how many people made it out! Not to mention great vendors like Schnucks, New Day Gluten Free, Delight Gluten Free Magazine, and so many more. There were quite a few also doing giveaways. Unfortunately nobody has called me to tell me I am a winner yet! Lol :(

Below is a list of a few of my favorite products from the event and where you can find them! If you have questions you can contact me, or one of the vendors who were all super sweet and knowledgeable about gluten free and their products!

The first was My Coconut Kitchen- They are a series of coconut butter based products that cn be used as sauces, made into hard candies, whatever your hear desires. The owner, Angie Carl, was super sweet, and all her product is made by her, here in the St. Louis area! To contact her use this link: Website!

Anyone in the St. Louis area knows Schnucks. However, what you might not know is that the Des Peres location employs Registered Dietitian Katie Mueller. She is available for Celiac store tours, nutrition counseling, and allergy assistance among other things. You can call the store at (314) 562-3615 for more details.

Another super sweet lady I wanted to mention is Laci Hansard. She is a fellow blogger at Picket Fence Paleo, and is an independent representative for Red Apple Lipstick, which sells completely gluten free lipsticks, among other products. She is very sweet and very active in the community. If you're interested in any of the products feel free to get in touch with her. Twitter or Email!

I could go on and on about the people involved that made this event a success! I will try to be working on a lot more product follow up so stay tuned!

Also I am currently reviewing a fabulous new gluten free cookbook. Once I have successfully made a few recipes I will post some pictures, and the publishing company is allowing me to giveaway one cookbook to one luck reader! So keep an eye out for the post in the next week! ;)

Bakery on Main Giveaway!

2014-05-26T22:36:00.002-05:00

In honor of the Gluten Free Allergen Free Wellness Event this Saturday May 31st, Bakery on Main has offered to giveaway a basket of their products to one of my readers. You can receive 2 entries for following me on Twitter (@TheCeliacLady) and 2 for liking me on Facebook.In addition you will receive 10 for following Bakery On Main on Twitter (@BakeryOnMain) and 10 for following them on Facebook. The winner will be drawn at 12:00 am Thursday, and I will get in contact with the winner sometime that day. Thanks for your support, and GOOD LUCK!

a Rafflecopter giveaway

Winners for the 2 pairs of free tickets have already been chosen. I still hope to see you all there this weekend!

Gluten Free Allergen Free Wellness Event

2014-05-22T16:44:00.000-05:00

For the first time in St. Louis we will have a Gluten Free Allergen Free Wellness Event on Saturday May 31st. This should be a great event with guest speakers and amazing gluten free foods.

Guest speakers will include: Vicky Englund, Debbie Simpson, Nikki Everett, Sema Dibooglu, Sheila Morton, Rachel Fasnacht, Tiffany Hinton and Pam Jordan.

Info:
Where: Orlando Gardens 8352 Watson Rd.St. Louis, MO
When: Saturday May 31st from 10am-3pm
Cost: $10/person 14+ (Kids 13 and under are free)

If you would like more information regarding the event please check out the event website: GFAF Wellness Event

New Gluten Free Products

2014-02-11T22:01:00.002-06:00

It seems to me all of a sudden more and more gluten free options are popping up all over the city. The first and most significant being a gluten free Girl Scout cookies! You heard me right. Gluten free Girl Scout cookies. Unfortunately they are not gluten free Thin Mints, and unfortunately they are not being sold in the St. Louis area. I do, however, have friends and family all over the country on alert for them. I will find them somewhere so I can try them and let you all know how they are. (For the record they are a chocolate chip cookie.) Beware Girl Scouts, I am coming for your gluten free cookies!

In the last few weeks I have also found two separate cafe/bakery/restaurants that are offering gluten free pastries. Sadly I have not been able to try them both yet, as I am still recovering from the ERCP. For those of you in the area here are the details:

The one I have not tried is a cafe/bakery place is called Piccone Pastry. They serve authentic Italian pastries like gluten free cannolis, or gluten free tiramisu. I mean really! Who can say no to that? Piccone Pastry is located on The Loop, so we now have a place that we can do some shopping and then take a break with a cannoli and an espresso just like "normal" people!

The place I have been fortunate to try is Crepes Etc.. They actually sent me an email letting me know about their new gluten free options, so I was anxious to try it! For locals it is located in Forest Park next to the Crown Plaza Hotel on Kingshighway. I ordered the Strawberry Crepe. It was two crepes filled with fresh strawberries, fresh made whipped cream and sprinkled with powdered sugar. It was absolutely delicious! The crepes on their own were awesome! I went with a friend who is not gluten free, and she ordered a "normal" crepe. She said if she didn't know she was eating gluten free she'd never have noticed. She said she could tell a texture difference, but again it was still good. My friend wasn't as thrilled with her Braised Beef crepe and the coffee was too strong for my tastes, but the Strawberry Crepe alone is enough for me to be a repeat customer! And best of all, I didn't get sick! For more information click the link above.

I am always on the lookout for more gluten free options in the city, so if you find one please pass it on! For now here is another place I have found and tried successfully:

Landry's Seafood (located at Union Station)- Limited GF menu, but I ate there without any cross contamination, staff was also very helpful.

ERCP... The Journey

2014-02-03T23:39:00.000-06:00

Since around September of 2013 I had started experiencing more symptoms that my pancreas was beginning to flare. I pushed off going to the doctor because I knew it would probably mean surgery. I was nauseous all the time, but more than that as soon as I would swallow a bite of food it would immediately come back up. It wasn't like vomiting, it was more like when you see a snake regurgitate its prey. I also have severe sharp pains right below my sternum that radiated to my back. It felt as if I have razor blades inside. Every time I would eat the pain would significantly increase.

So finally I decided it was time to give my pancreatic specialist a call. I explained my symptoms to the nurse who immediately said they wanted to see me. Due to weather and scheduling it took a couple of weeks to get my appointment but finally I made it and was pleased that they not only didn't think I was crazy, but agreed my pancreas was no doubt beginning to flare. They ordered some blood work and a CT scan just to rule other problems out, but I was told upfront that another ERCP was in my future. (An ERCP is a procedure where the function of your pancreas is tested, temporary stints are placed in your pancreatic or bile ducts to help stretch them out and take some pressure off your pancreas. Click on the link above to learn more.)

After the CT and blood work were normal we scheduled the ERCP for the following Friday. Now the stints that are placed are temporary because they are extremely painful when they are in, and so they are only left in in extreme cases. Most patients have them in for a few days while they receive in-patient care at a hospital and IV pain and anti-spasm medications to help you through the pain. And trust me, it is VERY painful.

All dressed for the party! I have a lovely gown, bracelets and piercings. Let's get this party started!

Once I was wheeled into the operating room I was able to have one last chat with my doctor before they put me to sleep. He said he had decided that he was going to put in the largest stints that he could in hopes that it would stretch out my pancreatic/bile ducts enough that maybe I could go longer than just three years before needing the procedure again. At the time it sounded great. I even shrugged off his warning that this meant that the next few days in the hospital would be EXTREMELY painful. Remembering back to my first ERCP they also removed my gallbladder so I didn't think that it could be much worse. After all they weren't removing any internal organs this time! I was so very wrong. Even now, three weeks, later I can barely piece together the five days that followed. The pain was something I have never ever felt before. And as you all know I live in pain every day.


Feeling a bit drowsy in recovery! Waiting for my own room. According to my parents I continually muttered "it didn't hurt like this last time!"

They put the stints in on a Friday, and I was scheduled to have them taken out on Monday and then if I could eat and was doing well I could go home the same day. Like I said about most of those days were a blur. I know Friday or Saturday I spent a significant amount of time with my head in a bucket! For the most part my time was spent receiving pain and anti-spasm medications through my IV, passing out within minutes of the injection, waking up and counting down the time until I could receive more medications. Finally the nurses starting writing on the board what times I was allowed to receive which medications. I had brought many things to do during my stay. Magazines, books, knitting, and of course I had a TV. Between the pain and the medications I never opened a book or magazine or watched even a 30 minute TV show. When I watched anything it was the board and the clock counting down until my next injection and praying to make it that long.

Snoozing away in my room, no doubt enjoying my medications! The hospital has a new wing where surgical patients all have private rooms! They were quite large too. I think having your privacy helps the healing! I was very thankful!

A rare but serious complication can arise from this procedure that causes the pancreas to flare. After the stints were removed, as planned, on Monday they checked my blood work. Sadly my enzymes were rising, which meant my pancreas was becoming inflamed, which resulted in my being held another day. Once the stints came out I was able to do more and wasn't in such severe pain. I could take a shower (to everyone's relief), I walked up and down the halls twice, and even talked to visitors. Thankfully a full blown flare was avoided and I was released from the hospital Tuesday evening.

As happy as I was to be home, it poses a whole new set of struggles. I took my medications, but they didn't seem to touch the pain. Between Tuesday and Thursday I barely slept one hour straight. I finally had to call the doctor to get a higher dose of pain medication. Once on a higher dose I could sleep and begin to heal. It has only been three weeks, and I am no where close to being back to normal. I still am in pain, but it is not constant. I am on a limited diet of 20g of fat per day and to avoid hard to digest foods like fatty meats, and raw vegetables. The restrictions will slowly be lifted over the next few months. They predict as extensive as it was that it will probably be six to eight more weeks before I really start feeling better. I am now hoping and praying that all this pain will result in going longer than three years between procedures. Typically patients go through it every three to five years. I believe if I can make it five years that will be a huge blessing! And next time I won't shrug off the warnings of how much pain I will feel.

The Spoon Theory

2013-12-16T21:26:00.000-06:00

I was sent "The Spoon Theory" by a friend I have found through my site and Facebook. I still can't believe that I had never heard of it before! I want you all to read it because I am not sure anyone could have worded it better. It was written by Christine Miserandino of ButYouDontLookSick.com. As I do not have permission to repost her story here I have just included the link. Please take a moment to click on it and read it. It is definitely worth your time!

The Spoon Theory

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
- See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.Fjx0ZBaT.dpuf

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

If you are having trouble with the link you can go to www.butyoudontlooksick.com and find it!

When you're done reading it pass it on! Everyone knows of someone that struggles in some way with illness so it is something that we can all relate too.

Merry Christmas and Happy New Year!

Miserandino

Seriously???

2013-11-26T00:52:00.000-06:00

So there have been a few things that I have read this week, in regards to Celiac Disease, that are making me question my faith in humanity. I think it is partially the fault of those "fad" gluten free dieters, but it doesn't excuse the meanness!

The first came to my attention from a posting in a Facebook support group by a fellow Celiac blogger. I do not know the people involved or the details, but this is what was stated. A couple is going through what has become a particularly nasty divorce. One of their children has been recently diagnosed as a Celiac. The father, not believing Celiac to be an actual disease, is refusing to feed the child in accordance with the diet. I do not know child abuse and neglect laws, but there has to be something that covers that! My heart brakes for that child, who doesn't know any better and can't do anything about it. It's disgusting.

The second was a skit by Jimmy Fallon last week. The skit is about an "author" of a gluten free cookbook being interviewed by Jimmy. Jimmy proceeds to mock the book and the need to be gluten free making comments along the lines of 'we all have headaches, get over it!' The skit ends with Jimmy throwing a gluten containing pie in the face of the "author."

(Click here to view the clip on YouTube)

Now I know he's a comedian and I CAN take a joke. But if this was someone with a peanut allergy or a shellfish allergy would it still be funny? Or even a socially accepted joke to make? If they were mocking a peanut allergy and shoved a PB&J in someone's face how many people would laugh? If you actually did that to someone you knew had an actual peanut allergy you could be charged with assault. And that is if the person lived! There is such ignorance and a lack of wanting to understand it is appalling to me. Not following a GF lifestyle can be VERY dangerous. No, we will not die of anaphylaxis within minutes of consuming gluten. We could however face pain, infections, cancer, infertility, nervous system disorders, malnutrition, and the list goes on.

The last is an article I want to share with you. I think it speaks for itself. It is just shocking how rude people are! It is a list of "pet peeves" written by two servers in Montreal. On the list they state:

2. Allergies and intolerances and gluten free, oh my!
Everybody these days seems to have some form of dietary restriction, and servers are constantly hearing about new allergies and intolerances — and don’t get me started on gluten free! The scene below happens in some form or another all the time:
Client: I’m allergic to nuts.
Server: Well the plate you ordered has nuts in it. Would you like something else?
Client: No I’ll still take it.
Server: Great! Do you have any other allergies that you made up?

My personal feeling is that these servers should not be in the service industry. Most of the piece is negative and whiny. I have worked in customer service, and in the food industry and I would have been without a job if that was my attitude! Sure some customers are frustrating and annoying! You have to remember though that just because someone asked you the same question twelve times already this week doesn't mean the customer standing in front of you knows the answer. It is your job to HELP and SERVE people! If I were to ever encounter a server with such an attitude I would be all too happy to take my "made up allergies" and my money to another business!

(Click here for the full article.)

I wanted to vent so-to-speak about all this before Thanksgiving and the upcoming holiday season so I can focus on happier things! Part of the problem is the "fad" of going gluten free, but for the most part these people are just ignorant. I never cease to be amazed by impatience and intolerance. I am, however, a firm believer in reaping what you sow so some of these people better think before they open their mouths again!

Catching Up, and Symptoms Years After a Diagnosis

2013-10-08T19:44:00.000-05:00

I have had a LONG 2013 so I haven't been able to write, but think it was time I got back into things! 2013 seems to have been one of those years where if it could go wrong it has. In hindsight it hasn't really been that bad, and I have been blessed in many ways this year, but it's been crazy enough to keep me from writing, which is usually my biggest outlet!

Especially considering my health it's been an uphill battle this year. I broke my foot, had numerous smaller illnesses like strep and bronchitis in addition to the normal Celiac, RA and Pancreatitis. One illness though in particular I wanted to share.

I thought that I knew all about Celiac and related conditions, that I was well informed and in control. I was not prepared for the curve ball it threw me this year and the resulting diagnosis. It seemed that although I had been gluten free for over six years now I was still having symptoms after eating. My mom was the first one who pointed out to me that there was something else that I was eating or consuming that was making me sick. Every time I would go to New Day Gluten Free and have my usual turkey sandwich I would be sick by the time I made it home. It is only about a thirty minute drive, so whatever was causing the problem, the reaction was quick!

Since New Day is 100% gluten free I knew that cross-contamination wasn't the problem. And since my turkey sandwich consists only of bread, turkey, lettuce and onion it seemed that wasn't the problem either. The only other thing I could think of was that I would have a nice big Coke every time I was there. It seemed weird that Coke could make me sick, but decided to run an experiment and cut Coke out to see how I felt.

Amazingly without Coke I no longer got sick after eating my turkey sandwich! I LOVE Coke but decided it didn't like me, so I went without. I tried other sodas but they made me sick too. I couldn't figure out if it was the carbonation, the acid, or the caffeine. It just didn't make sense. Anytime I drank soda within half an hour I would be doubled over with stomach pain, and all the glorious symptoms associated with food poisoning of being "glutenated"... I still had reactions after eating other things, but I couldn't pinpoint the culprit.

I called and talked to my gastroenterologist who told me I will probably always have a "temperamental" digestive tract and there wasn't much that could be done besides trying to control symptoms. I am also pretty sure she thinks I have completely lost my mind! Who leaves a message for their doctor saying Coke is making me sick? It doesn't make sense. There is no Coke-itis in the medical dictionary!

The defining moment came when my mom made some lemonade. I drank some and was sick within the usual half hour. Not knowing what could have done it I checked the ingredients and finally began to connect the dots. With the exception of water the only ingredient in common with soda was high-fructose corn syrup. I didn't understand how or why high-fructose corn syrup could make me sick, but knowing that it had to be the culprit I began doing a ton of research and asking around.

What I found is that there is an actual disorder called Fructose Malabsorbtion. One of the most fascinating facts I learned was Fructose Malabsorbtion is most commonly found in patents diagnosed with Lactose Intolerance or Celiac Disease. I was dumbfounded that "my" disease that I thought I knew so much about could be linked with another condition I had never even imagined.
http://www.blogger.com/blogger.g?blogID=2100144888579601052#editor/target=post;postID=6851639397628119030
Fructose Malabsorbtion is similar to Lactose Intolerance in that your body cannot digest it, it is different however, in that unlike Lactose Intolerance there is nothing you can take to aid your body in digesting fructose. A fructose molecule is already so small it cannot be broken down any further the way lactose enzymes break lactose down. The only treatment for the disorder is to eliminate fructose as much as possible from your diet.

Fructose proved to be, for me anyway, trickier at eliminating than gluten was. High-fructose corn syrup was pretty easy, (though it feels like it is in EVERYTHING that gluten isn't in), but learning which foods naturally contained more took lots of research! An example of such foods include: apples, watermelon, pears, honey, agave, and fruit juices, and foods like onion, and garlic can be consumed, but only in small amounts. Needless to say I am still learning, but for the most part all the symptoms I had have begun to disappear. Even within the last two weeks I have felt better than I have in months, all due to cutting out fructose.

Below are some links and more information regarding Fructose Malabsorbtion. Please do not confuse this with Hereditary Fructose Intolerance, which while similar can be a very serious and even fatal disease. Also while I recommend keeping a food journal and experimenting with eliminating foods if you are having symptoms there is no substitute for talking with your doctor and receiving an official diagnosis. Especially when there are other much more serious diseases that can mimic a food intolerance!

Mayo Clinic
Wikipedia

A Christmas Story

2012-12-20T18:54:00.001-06:00

This post has nothing to do with health, or Celiac or gluten free living, but I wanted to share with you a true story that reminds me what this time of year is all about. This happened last Christmas, and since I still know all the people involved I have changed their names.

Last year a few of us at my church were collecting donations to give a gift to a couple (we shall call the wife Ruth) that do a lot for our congregation. We collected cash from those able to give and used it to get gift cards and make a wreath. I was surprised and touched by how much was given, but that in and of itself is not what this story is about.

There has been a single mother that has been a member of the church long before I moved to St. Louis, I will call her Martha. Martha struggles with mental illness and as a result struggles with parenting, finances, and providing for herself and her family. Ruth goes over and above to help this family, more so than any other member of the congregation. She does things like driving them places, providing care and meals, and due to the mental health issues they are not always the easiest to be around. We are all human so we can all appreciate how sometimes such a task can wear on our emotions, patience, and even faith and Ruth was no different. She had confided in me at one point that she was really struggling with her patience and doing what she knew was right and best for Martha and her family.

The week before Christmas, Ruth announced in our ladies Bible class that Martha did not have the money to purchase gifts for her children, much less food for a Christmas meal. She asked if anyone had a few dollars to spare if so they could have something for Christmas. Of course people stepped up and volunteered to cover various gifts and food to ensure they didn't go without.

That very night Martha came to me, as I was collecting donations for the gift for Ruth and her husband and handed me $6. She said this is all I have but Ruth and her husband do so much for me I want to do something for them, I am sorry it is not more. She did not know I knew she wasn't going to be able to buy a meal for Christmas dinner, or even a single gift for her children, but she recognized the love and care she received from Ruth and even though the donation was anonymous wanted to give something back.
I was able to hold my composure until she walked away, but I was so touched by her love and generosity it brought tears to my eyes. Knowing how Ruth's patience had been tested in her generosity to Martha and her family I debated whether or not I should share what Martha did. I came to the conclusion that in this world we don't see and hear enough love and kindness and that it would touch Ruth more than it had me, so I decided to tell her. I didn't tell her the amount, but I told her what Martha said and that she was appreciative and wanted to give something, even what seemed to be so insignificant.

Before I finished the story, Ruth and I both had tears in our eyes. I told her how I debated about whether or not to tell her and that I decided to tell her because so many times we struggle and our patience is tested when doing right by others and we usually do not get to know if our efforts really made a difference. In this case, Ruth's love and friendship meant so much to Martha she was willing to give her last few dollars forsaking herself and her own family.
I wanted to share this story with you because there is so much bad we hear about every day. And especially those of us who suffer every day with health issues and lack of support it is so easy to lose faith and hope in the world. I think about what happened all the time, especially in times when I am watching the news and hearing about kids being killed, or wars, thefts, etc. It gives me hope, and strengthens my faith that there are good, loving, wonderful people in this world. It also is an example for us all to recognize our priorities and what things in this life are truly important.

I am wishing you all a very Merry Christmas and a Happy New Year. I will be back after the first of the year! God Bless ~ Angela

Cranberry Sauce Recipe

2012-11-13T00:36:00.002-06:00

Thanksgiving is my absolute favorite day of the year! I love fall, and I love good food. Put the two together and it makes for the best holiday of the year! Since being shoved into a gluten free lifestyle I have been more open minded when it comes to trying new foods, cranberry sauce for example. I have never been able to stomach the canned jelled cranberry sauce. I blame it on having my wisdom teeth and tonsils out within a year of each other which led to my disgust for anything gelled, especially Jell-O. A few years ago I decided to try making homemade cranberry sauce from actual cranberries (no gelatin involved!!!). Since then I have adapted the recipe for my own tastes. It is SUPER easy. I make it the day before and keep it in the refrigerator until time to eat. I also make it for Christmas dinner and any other occasion through out the year that it seems right. So here it is:

Ingredients:
12 oz Cranberries (I have found the frozen variety end up sweeter, but the fresh variety work well too.)
1 cup Sugar
1 cup Orange Juice
1 20 oz can Crushed Pineapple
2 Cinnamon Sticks (optional)

Mix sugar and orange juice in sauce pan and stir on medium heat until sugar is dissolved. Add cranberries and cinnamon sticks and let simmer, stirring occasionally, until the cranberries begin to pop (this may take as long as 45 minutes, so be patient!). Remove from heat, remove cinnamon sticks, mix in pineapple and refrigerate until ready to serve.

It's sweet and still a little tart, adds a dash of color to the plate, and is probably the easiest side dish for the perfect Thanksgiving dinner.

Getting Caught Up

2012-11-12T05:29:00.000-06:00

It has been far too long since I have posted anything. The last few months have been a roller coaster ride for me, and have kept me extremely busy.

I spent the first week of September back in Colorado visiting friends and family. I got to meet my best friend and cousin's daughter, Emma. (Even though she was already ten months old at the time.) We spent a day in beautiful Breckenridge and I enjoyed a fabulous gluten free pepperoni and green pepper pizza at Downstairs at Eric's. (I HIGHLY recommend visiting Breckenridge. It is one of the most beautiful and fabulous places on Earth, and for being such a small mountain community has quite a large selection of gluten free options!) I also had my birthday back in September, and had 2 separate and equally delicious cakes. One my sister had made in Conway, AR the other from New Day Gluten Free in Ellisville, MO.(Pictures are coming of the first cake!)

Stargazer Lily birthday cake c/o New Day Gluten Free

Three days before my birthday I had trigger-thumb surgery, and the day after that I had an impacted wisdom tooth pulled.Recovery has been quite slow, especially for my hand. I ripped my stitches, then had my incisions glued, and ripped the glue open as well. My hand is still sore and swollen, but is getting better every day!

Back in October I received an invitation to write for In Just 10 Pages. A fabulous site with tips and recipes and stories about gluten free living. I am planning on submitting more when time allows! My site has also been added to the National Foundation for Celiac Awareness as well as Celiac.com. I feel so blessed that my simple little site and all my effort to share my story and to help others has gotten some recognition from others in the community!

Also in October I gave in to the harassment of various friends and family members and had professional portraits taken. I have been putting it off for a long time, mainly because I have never liked getting my picture taken. Needless to say I suffered through. The photographer was super sweet, and while we were chatting I found out she had been misdiagnosed WITH Celiac, after following the diet for some time. I will post my new pictures when they are in. My photo on the main page is almost 4 years old so I suppose it is time for an update! :)

Last week I volunteered as an election judge. I didn't realize until after I committed to it that I couldn't leave and had to report at 5 am Tuesday morning. It made for a VERY long day. Thankfully my good friends at New Day Gluten Free prepared me snacks, a sub sandwich, and cake to share with my fellow judges. Needless to say I was well fed the entire day!

While I was judging the election, my parents were hosting an election party. I made a gluten free flag cake for the party and decorated it with red, white, and blue icing. Since I was short on time, I used store bought canned icing, and the Betty Crocker Gluten Free Yellow Cake Mix. The cake came out great, and it flipped right out of the cake pan without breaking apart. After icing it I took a spoon and ate all the extra icing. While doing so I realized the Wilton red and blue icing I got was thickened with wheat starch. I felt like the biggest idiot ever, and am still suffering the consequences of the "glutenating" a week later! It served as a good reminder though that you can never be too careful or read a label too many times!!!

I am putting together recipes and shopping lists for Thanksgiving, my favorite day of the year. This year I am spending Thanksgiving with my parents and various friends that do not have family in the St. Louis area. They don't know it yet, but Thanksgiving will be 100% gluten free, and DELICIOUS!!! I will list some of my favorite recipes later this week, and of course share how my Gluten Free Thanksgiving goes!

How My Faith Allows Me to Survive

2012-08-17T21:54:00.000-05:00

I know I have mentioned before that my faith has been a huge factor in my coping with the medical ups and downs, and even the regular curve balls life has thrown my way. I have been thinking about it more and more lately from hearing about the struggles people around me are dealing with, and the more I think about it, the more I am convinced that I could not have survived this far without my faith.

When every day is a struggle to get out of bed and be out in the world it's incredibly easy, and somewhat inevitable that you'll eventually fall into depression. I have been through numerous days when I all want is the pain, nausea, throwing up, etc to just stop and feel I will do anything to make it stop. It's in those times that it hits me how terrible life would be if this was all there was. The idea that my life is going to be pain and suffering and being miserable and then I die and that's it, is too depressing to think about. It seems like such a waste. And in order to make it through those days I HAVE to believe that there is something more coming, that this life is not it, and someday I will be able to leave my body behind it, and with it my diet, my pain, my medications, my cares!

When I was still working, I was struggling with harassment from my employers so I taped the cliche "I know God will never give me more than I can handle, I just wish He didn't trust me so much!" to my computer monitor so I was reminded that I could and would make it through. I have recently been thinking about that saying over and over again and also thinking about Philippians 4:13 which reads "I can do all things through Christ who strengthens me." So if He will never give me more than I can handle, but I can do all things through Him there should be no limit to what I can withstand.

All this thinking led me to another thought in regards to a lady I know who's physical struggles make mine look insignificant. I can tell by looking at her that she's struggling, and not feeling well, and heard her repeat that cliche "I know God will never give me more than I can handle, I just wish He didn't trust me so much!" Immediately as she said it the thought popped in my mind, that like Job, not only did God trust her enough to handle so much, He knows she's strong enough to get through them.

Once I started applying my "revelation" to my own life, and struggles, my entire outlook on why I have been given so many struggles changed. Instead of being punished, or cursed, He has allowed to have the ailments I have because He knows that I can handle it. That's also why I have it and my sister, who comes from the same genetic material has none of the struggles I have. Whatever it is in me, I can handle it, even when in some of the hardest, darkest days it doesn't feel like it.

Of course it is not always as easily applied to my life than it is to type it. Everyday is a battle to stay positive and make the most of life, just like it is for everybody. But it's comforting to have some type of justification for the struggles I have faced, especially in my adult life, and those I will continue to face.

A Blessing in Disguise?

2012-07-03T15:56:00.001-05:00

If you are like me when you were diagnosed with Celiac disease it was a very scary, lonely place to be. I was diagnosed in April 2007 while living in Colorado Springs, CO. I hadn’t really ever heard of Celiac much less did I know anyone else with the diagnosis. It was completely overwhelming to walk out of my doctors office with what seemed like the end of a good life with good food. At the time there weren’t even Facebook groups that I could turn to for support. I felt like I was drowning in a sea of uncertainty.

I visited a nutritionist that my gastroenterologist recommended and left with less certainty and knowledge than before I went. As I mentioned in my second post she also suggested a pro-biotic and natural Chinese herb that was supposed to aid in my healing and only ended up poisoning me, as it was bound with wheat. I know no one forced me to take the pills, but I also trusted her and was beyond disappointed. So I proceeded to embark on my new lifestyle alone.

The gluten free food options available in 2007 weren’t the most appealing to the palate. Breads were extremely expensive and were dry and crumbly. It seemed like gluten was jumping out at me from the least expected places. I had to question everything I put in my mouth. Reading labels was also hard to learn because of the different names that darned protein is disguised as like malt and spelt. And with each realization, like malt, a whole new section of foods were too, off limits.

I also had to throw out everything I knew about cooking and baking and start over from the beginning. I tried various different flour mixes, both ones I bought and those that I made myself, but all I ended up doing was producing inedible foods while draining my pocketbook. It took months and even years to master the ends and outs of my new lifestyle, and I am still learning new things all the time.

All that being said, when I look back on the weeks and months after my diagnosis it is easy to get lost in the pain, sickness, frustration and anger I experienced and forget about all the good that has come from my diagnosis. But in more ways than just my health, having and knowing I have Celiac disease has completely changed my life. I think it is just as important, if not more so, to think about the good aspects that has made my diagnosis a blessing in disguise.

First and foremost, since my diagnosis, a lot of problems, both health and mental, can be explained. My entire life I have struggled with various physical issues from endometriosis, chronic strep, sinus infections and lactose intolerance to mental issues like anxiety disorders, depression and difficulty learning and paying attention. My doctors and I worked to treat these individual issues, with little success. Since my diagnosis I have seen a huge change in how my body responds to other ailments and most noticeably I have seen how easily I can learn and retain new information. For the longest time, especially during the latter part of my teens years I often wondered what was wrong with me, and that I felt stupid. Everyone it seemed, teachers, my parents and friends all couldn’t figure out why I couldn’t understand basic concepts and information I was taught in school. Although now you couldn’t pay me enough to go back to high school, I often wonder if I had had the diagnosis, how different my school life would have been.

For every five people that I have struggled to explain my diet and lifestyle to, is one person that has been supportive and understanding. In particular while working for Carnival Cruise Lines in Colorado Springs (I bet you never thought a cruise line would have an office in a land locked state!) my coworkers would bend over backwards to ensure I could eat comfortably and safely. At the time of my diagnosis I was working for an architectural firm and during an employee outing my boss actually called out the chef and manager of the restaurant and went over the diet with them so that I could take part in the festivities. It's occasions such as these that help to remind me that there are genuine people out there that care!

Of all the good that has come from diagnosis, the one thing that sticks out for me the most, has been being able to share what I’ve learned with others that are newly diagnosed. Soon after moving to St. Louis, I was standing in the gluten free aisle at a local grocery store when I was approached by a lady who had been staring blankly at the shelves. The lady approached me and explained that she had been diagnosed within the last week, had only lived in the US for a few months and couldn’t read English well enough to know which foods she was allowed to eat. Even though I was already running late for work I stopped and did my best to explain things to her, and recommend some products I knew would taste ok. I never saw or heard from that lady again, but that was the first time I thought that maybe I had this disease for a reason, and that I could use it to help someone else!

It has been four years since I have come across that lady in the grocery store and there have been countless opportunities since then for me to reach out to others that also have Celiac disease. My ability to speak with others and to write here and hopefully reach people has given me a new lease on why I have been given so many medical and health problems. And even if I haven’t reached anyone, or made a difference in their life, being able to share and write has made an extraordinary impact on my life and health, and for that I am most grateful.

Gluten Free Frauds

2012-06-28T08:00:00.000-05:00

After I moved to St. Louis I discovered a gluten free store/bakery about an hour from my home that I have visited on a number of occasions. They are, of course, quite expensive, but offered tasty food and retail items I had never found anywhere else. I didn't make it there on a regular basis having it so far away, and to be honest something seemed off in a way, every time I was there.

The owner seemed to be about the rudest, grumpiest person around. I would ask for information about doctors or other gluten free locations in the city and tips for gluten free cooking. Most of the time I couldn't even get an answer. I once placed an order that they were going to deliver to a grocery store closer to where I live and despite having a receipt showing I paid for the product when I picked it up the owner refused to let me purchase any other items until I paid again, as their records showed it had not been paid for. For the longest time I assumed that for whatever reason she just didn't like me, as I would see her being friendly to other customers in the store.

After almost four years of dealing with the place, on a whim I started to ask around to see if anyone else had a similar experience. The first people I asked were friends and family that had visited the store to purchase items for me. They too said that they were treated like they were inconveniencing the staff by being there. Then I asked other Celiac's that were customers there what their experiences were. Not a single person I talked to had a positive thing to say about the place, except that their products tasted good. The last person I asked is a fellow Celiac that I have gotten to know quite well by shopping at another gluten free bakery in the St. Louis area. As it turns out she knew the other owner quite well, agreed she was not a very nice person and does not have Celiac disease, or a family connection to any type of gluten intolerance.

This information inspired me to do some research and investigating of my own. I found out they stumbled into the gluten free business. The owner was manufacturing a few products that were naturally gluten free and a customer advised them if they advertised as gluten free they could make a killing. They apparently decided to set aside some of their product (which was EXACTLY the same as the other) and label it as gluten free and charge a few dollars extra. And it worked. This made them decide to start making other gluten free products and sell them for a large profit. Soon the store had turned into an exclusive gluten free locale.

During my investigation I met an employee. They were hesitant to share too much information regarding their experience but did say that they felt the company only existed to make as much money off gluten free consumers as possible and shared two examples with me. One was they host occasional gluten free vendor fairs and charge a hefty sum for companies that wish to buy a booth for the fair as well as charging a high price for admission. Doctors and lecturers were all volunteers, food and drinks were all at a cost so the company comes out of the vendor fair with a significant amount of money in their pockets. The second was when they have a new product they label it was a hefty price tag and slowly lower the price until the items sell. The goal being to sell them for the highest price possible while still moving products.

After learning all I did about this place I was absolutely furious. I am very much a capitalist, however, I couldn't help but feel taken advantage of. Here was a company with absolutely no idea about the disease, the lifestyle or the diet, and were making a product with the sole intent on making as much money as possible. They don't understand the financial burden of having a loaf of bread cost $8, or a box of spaghetti noodles going for about $4. They are preying upon a group of sick people.

I have made the personal decision that I will not shop there again. I have gotten to know other gluten free store/bakery owners that are in the business for the right reasons and live the lifestyle themselves. In fact my favorite bakery, New Day Gluten Free, takes a loss on certain items like their sandwich bread so that they can supply it to customers for a somewhat reasonable price. I understand not every place can make those types of sacrifices, but I would much rather give my business to a place that knows and cares about the lifestyle than someone who is just looking to make a quick buck off me. That all being said I would encourage everyone to look into the companies that supply their gluten free products and maybe we can start to make a difference in the price of our food!

The Lonliness of Chronic Illness

2012-06-19T22:58:00.001-05:00

For me, I think the hardest part of dealing with poor health is that it is a lonely, lonely world. Sure there are people out there that care and can empathize and, of course, there are doctors, but it's not the same. Think of it like this: When your fingers, ankles, and hips are aching, throbbing and swollen; simple things like sitting, walking, climbing stairs and touching your fingers to your thumbs is not only extremely painful but not always possible. Pain medications make you shaky and nauseous which upsets your already sensitive stomach. Everything you eat seems to make your stomach worse; so you're literally afraid to eat. You put off eating until your blood sugar gets low which makes you more nauseous and gives you an unbelievable headache. Once you eat you start the game of trying to stay as still as possible because if you move the food won't stay down. If you do manage to keep food down, then it is only a matter of time before you begin to have sharp stomach pains and potentially diarrhea. And...the part that makes this so lonely is that no one is inside your head feeling what you're feeling. No one understands if you breathe wrong you're going to get violently ill, or how frustrating it is when a simple task like holding a fork is more than you can bear. No matter how much friends and family can empathize and doctors take down details to study and diagnose there is no escape for the torture of living with all of this, alone, inside you're own head.

I have tried my best to verbalize what this all feels like on a day to day basis, but it's hard to make someone understand that has never lived an hour in my body. It's impossible to imagine what it's like unless you've lived it. And the mental torture of trying to explain to someone only adds to the pain. For example, when meeting new people or talking to old friends and acquaintances, the inevitable question of, 'how do you feel?' always comes up. It has become one of the most agonizing questions because it is hard to verbalize the daily struggle that life has become. Or, how the most exciting thing that has happened to you that month is you have gone twelve days without throwing up. This all hits especially hard when compared to the goings on of people around you like graduations, new jobs, weddings and kids. There is a whole level of mental torture that is unseen, and for some reason seldom talked about.

Medications also play a big part in messing with my mind. They can make me sleepy, dizzy, emotional, restless, depressed, sick, and anxious, cause headaches, sensitivity to light, or make me unable to wake up. If the stress of the illness isn't enough, the side effects of medications is enough to push you over the edge. Sometimes nights are unbearable and it's yet one more aspect to this life that unless you've lived it you will never understand or fully appreciate. I don't intend for this to sound as bad as it probably will but after living through restless, stressful, emotional and nauseous nights I can see how people have accidentally overdosed on pain or sleeping medications just trying to get the pain and agony to stop. Think about this, don't just read it, really think about this and imagine how you'd feel: you're lying in bed at night, you can't stop an extreme restlessness and urge to move, when you do move your joints are so tender and swollen it hurts and makes the nausea worse, you're exhausted, you're on the verge of having an emotional breakdown from the stress and anxiety and medications, and the tears won't stop, the only thing in the world you want is just to fall asleep until it's all over. I've passed many nights this way or doing leg lifts on my bathroom floor in between throwing up, or walking stairs, praying it will all end and then waking up with tear stained pillows and tissues around my head.

Over the last few years I have lost touch with many friends due to my medical issues. I don't blame them or myself, everyone has to move on with their life but on those tough nights, or those impossible days, it still hurts. It hurts to see your friends and families lives going on with the feeling that life has left me stranded in limbo. I recently was watching a show about service men and women coming home from deployment and a sailor made a comment about how after deployment you come home and your six months behind the rest of the world so you have to play catch up. I thought about that for a while and it has left me a little envious. While he gets a chance to catch up, I don't. I will never have a break from the medications or the conditions, the stress or the feeling of being trapped in my own head. I also do not get a break to live life like a normal twenty five year old. I will probably never be able to finish college, I will probably never be able to hold down another job, or even own my own house. I won't be able to travel to the places I want to go, nor do all the things in this life that I would like to do. The only thing that's more painful than that realization is communicating it to those around and hearing their past adventures and plans for new ones.

I know that no one has ever thought life was fair, and these were the cards I was dealt so there is no point arguing with the dealer, however, it does make this life a very lonely place to be. Part of me wants to scream it out loud and force everyone around me to realize and understand what day to day life is like and how I feel in those agonizing hours. The other part wants me to lose myself in denial of what my reality is. For now I suffer in silence except writing here and talking with those few other lonely souls I come across, partially because as much as I try, no one will ever understand the life I live and partially because some days the pain is too much to communicate.

I would never wish my life on anyone, but I still wish I could make people understand. Understand things like how alone I sometimes feel in this world, and how there are times when I think I'd do anything if I could just make it all stop. If you happen to be reading this and have never dealt with issues like this I am begging you to stop and think about how your life would be different, and how lonely the world would be. Think about the blessings you have and that you don't pass your time in such ways, and the abilities and opportunities you have because not everyone does, and there are some people that would do almost anything to live a "normal" life like that.

The Stress That Made Me Disabled

2012-05-25T13:43:00.000-05:00

Stress is a major factor in living with and managing chronic medical conditions. This has been proven to be no different for me. In fact, I even take antidepressants to help manage day to day stress and have anxiety medications for those 'extra special' times. Stress is even the number one cause of my RA flares. I strongly believe stress is what finally caused my intestinal symptoms that led to the Celiac diagnosis and stress was the straw that broke the camels back, so-to-speak, that led to my disability.

After moving to St. Louis, I got a job working for a publishing company. It was pretty good money, and since it was such a large company I thought I would have excellent opportunities for growth. Unfortunately, it didn't take long before I realized I was working for a company with a complete lack of ethics. The first clue was when a supervisor made very loud racial comments and no one did or said anything about it. I finally got tired of it and went to HR to report it. They said they pulled her aside and talked to her about it anonymously. It apparently wasn't anonymous because that supervisor soon decided to take her revenge. At one point, during a review in which I reached all my goals and preformed my tasks perfectly, she said that there was no way she could give me a perfect score and she knew I had to be doing something wrong. She wouldn't sign off on my review until she went over things again and found something against me. And that is exactly what she did.

About this same time, they hired a new man who happened to have gone to high school with the VP of Customer Service. This new coworker also happened to have a liking for younger women. Before too long he was coming to my desk, and that of other female coworkers, running his hands through our hair, rubbing shoulders, making suggestive comments, etc. Most of us tried to say something however, he also had a terrible temper and was a very big dude. I mean 6'5'' ish and weighing 250-275 lbs. On one particular day I had finally had enough and said as much. He was so upset by me "rejecting" his behavior he threw a piece of his phone at the window breaking the blinds. Naturally, I was incredibly uncomfortable working so closely with this man and finally decided I needed to report it.

When I spoke to my boss I was informed that I wasn't the first or second person to complain about this specific person, but instead the fifth or sixth. In most companies today if one person has more than three of four sexual harassment complaints within the same year they aren't around much longer. But not at this company. He said he would take my complaint to HR immediately. Later, I was informed my supervisor had changed his mind, he'd had a "heart-to-heart" with the man and it wouldn't happen again. This didn't sit right with me. After all, this man and I were usually the last two at the office every night. I decided I have to take the complaint to HR myself. This caused huge repercussions for me. As it turned out, not only was this man friends with one of the VP's in the company but he was also drinking buddies with our boss. From that day on, I had a target on my back.

Anything and everything that I could get in trouble for I did. At one point, after a network crash, I was blamed and threatened to be written up because I type too fast, causing the crash. I was accused of trying to start fights with various coworkers over everything from customer complaints to trying to steal boyfriends. At one point they accused me of threatening a coworker with a shoe. Every day it was something else to get me to either quit, or do something to get fired. They would drop angry customers into my voicemail stating I was the "Complaints Department" and would take messages and not give them to me. I even received threats for reporting the harassment on Facebook as well as in my personal and company emails and on my cell phone. Unfortunately for them, I kept a perfect work record through all of this, though the stress began taking it's toll on my body. I began to miss more and more work and would spend a significant amount of time in the bathroom throwing up. This only added fuel to the fire and in an effort to discredit my sexual harassment complaint, rumors were started about every male I spoke to in the office. After going to lunch with a male coworker and running into my boss, soon the entire company thought I was pregnant with the coworker’s baby. I received congratulations from people I had never met before, received gifts of parenting books and baby formula sent to my home address. No matter what I did I could not escape it.

I began to drop weight quite quickly. In one month’s time I lost almost 20lbs and the doctors were at a loss as to why. I tried to apply for jobs in other departments but struggled to even get interviews and was never offered a position. I also applied for jobs outside the company, going as far as trying places like Starbucks. However, the state of the economy and my health proved to be obstacles I couldn't overcome. I finally felt my only choice left was to seek help outside of the company. I tried to file complaints with the Missouri Department of Labor and the EEOC but seemed to be passed around from person to person, so I hired an attorney. I could hardly afford the attorney with the mounting medical bills, but I had to fight back in order to save my sanity and my health. My attorney filed the claims with the Department of Labor and the EEOC after giving the company a chance to "settle". They, of course, denied any wrong doing and a government investigation began.

The investigation ultimately proved that what they were doing was extremely unethical but since I couldn't prove who was doing most of the harassing and a lot of it came down to he-said-she-said there was nothing they could do as it wasn't illegal. I did however score a few minor victories in that I had a few emails in writing showing the company was at least aware of the harassment, which they had swore in their statements to the EEOC that they were not. The investigator gave me a writ to file a civil suit against the company and told me, off the record, that she believed everything I was claiming and was appalled at the actions of the company and wished she could do more for me. I discussed a civil suit with my attorney; based on my health and financial situation we both agreed I would not be able to handle it or even win.

Before the investigation was finalized, my best friend suggested seeing if my doctor would allow me to take a two week leave of absence to see if that much rest would allow me to recover. Since all of my doctors were aware of the situation I was in at work, it took no time at all to get the request made and approved. I was still loosing weight, I was hardly keeping food down at all even with the help of anti-nausea medications, and I began having sharp stabbing stomach pain after eating. The two weeks allowed for time away from work to run tests and remove myself from that environment. By the end of the two weeks I was not any better, nor were there any answers about to why I continued to grow sicker and sicker. My doctors extended my leave of absence which led to short-term disability, long term disability and now permanent Social Security disability.

It took five months after the last day I worked for doctors to determine what the problem was. I went in for a hospital stay and an ERCP (I don't fully understand everything the procedure entails but they go down your throat similar to an endoscopy, examine your pancreas and if need be place stints, like mini straws, into your bile or pancreatic ducts.) After the procedure, my doctor informed me I was also suffering from gallstones and would need my gallbladder removed immediately. Since an ERCP is an inpatient procedure I had my gallbladder out the next day, and the day after that they removed the stints from my bile ducts. It was then that I finally began to recover, but I would never go back to work.

I obviously don't have gallbladder problems anymore but to this day, in stressful situations, my pancreas flares up; I get sharp stomach pain, I begin to loose weight, and I am unable to keep food down. It's as if my body has endured all the stress it could take. I have taken great strides to better manage my stress. I saw a stress management counselor, continued to stay on anti-depressants and anti-anxiety medications and do my best to remove myself from stressful situations when at all possible. I am still hopeful that someday I will be better able to manage stress without such harsh physical repercussions and reenter the work world, at a different company of course.

Not to end this on such a mushy note, but there are at least a few good things that came out of this situation. One, is that I was able to get out of the company, even if it was not exactly in the way I was planning. Two, I was able to get disability and now have the time and resources to focus on taking care of myself. And three, I am not as passive aggressive as I used to be. I learned to stand up for myself and speak my mind because if you don't do it for yourself no one else is going to be there to do it for you.

My Personal Journey With A Broken System

2012-04-13T17:16:00.001-05:00

For anyone who has been through serious health problems, you understand the battles you undertake with insurance companies and the seemingly endless financial burden. A single night in the hospital, with insurance, can still cost you $20,000. You can make small payments on medical bills like $5 a month, but between the interest and fees for every month you pay $5 they tack on $105 more. And despite efforts to make healthcare affordable, prices seem to just continue to rise and rise and rise, with no end in sight. The stress from all these bills and battles is enough to make you sick, which causes more medical bills. It's a never ending, vicious cycle.
I have been fortunate enough to have fairly good luck with my medical insurance company, however, my long term disability insurance is a whole other story. There are quite a few dirty little tricks they play so they can deny you coverage. One trick is asking you what your planned return to work date is and then as soon as that day rolls around they stop your coverage. When I initially took a leave of absence it was for two weeks. Naturally, they weren't happy when the two weeks turned into a few months and eventually a couple years. They first denied me coverage two months after I began my leave of absence. I had to write a very firmly worded appeal letter and was eventually approved and paid for the few months they cut off my benefits. I quickly learned never to give a specific return to work date since doctors were unsure of why I was so sick and I was looking at a minimum of two surgeries and a hospitalization.
I made it through the next few months fairly uneventfully, until around May 2011. At this point I had already transferred from short term disability to long term disability. The insurance company was requesting an in home meeting to evaluate my condition in person. Upon research, I discovered why they do these interviews...they want to come into your home so they can see how you live. An example I found, is if you state you cannot walk without assistance they will sit at your kitchen table and politely ask you for a glass of water. If you get up from the table without your cane or walker they will state that you can walk without assistance and deny you coverage, even if you take just two steps from the table to the sink. They will also ask to take your picture during the interview. This is to give to private investigators who are paid to follow you to prove you are doing something against your disability claim so they can deny coverage. I was advised they will follow you a few days before, the day of, and a few days after your interview. They will also ask you the same question over and over again, in different ways, to try and trip you up and then "catch you in a lie" to deny your coverage. The whole thing is sneaky and abhorrent. It's absolutely disgusting and perfectly legal.
When I heard my insurance company wanted to do this interview and they wanted to schedule it as soon as possible, sirens went off in my head. This didn't sit right with me since I had never heard of an insurance company making this type of request. I didn't return their call right away and instead made a few calls of my own, and did some research. My doctors had never heard of this either, but I found many websites with people, especially people with my insurance company, getting the same requests. I read stories of people being denied coverage for not using a cane to go to the mailbox, people having to call the police to have the "interviewers" removed from the property because they were denied entrance into the home and subsequently started banging on doors and windows, people being watched and followed on a regular basis, all in an attempt to deny them coverage. Most of the people had stated they found out later their policy did not even require them to do the interview. Many also found out, after they were pressured into it, that legally the company must provide you with thirty days written notice of the interview.
Upon being enlightened about the sneaky, not so honorable practices, of my insurance company I called the company back and said that before I could schedule the interview I needed to see a copy of my policy stating the interview is required. They told me it wouldn't say it in those exact words, so when I received my policy and it stated it, in those exact words I was EXTREMELY hesitant. In the mean time, the "interviewer" was calling me daily asking to schedule the interview. I told her that I was waiting for a copy of my policy, and that upon reading that, and consulting with an attorney I would then go forward, if it was required of me. I later heard from the representative in charge of my case who stated that I was not allowed to wait, that I was lying when I said I had to wait for the policy. Luckily for me, I recorded all my conversations with them and informed them that they were the liars and I had a digital copy of the conversation that I would be happy to email to him to help refresh his memory. He never accused me of lying again, that's for sure!
After receiving the policy and being hesitant about the wording, I called my former employer, since they also have a copy on file in Human Resources, and had them send me a copy. After reviewing the copy from my employer, I realized I was supposed to submit to the interview. I sent a letter to the insurance company stating that I was to have an attorney review the policy and that I did not appreciate them accusing me of lying and of them trying to force me into the interview without proper consent. I also informed them that they had to provide me with thirty days written notice of the agreed upon date, and that it was illegal for them to push me for an interview. That letter was sent about ten months ago, I have not heard another word on the subject, and have not had to submit to an interview. In the meantime, this was the straw that broke the camels back in which I finally decided that I could not go on fighting the insurance company...so I hired an attorney and applied for social security disability.
If you find an insurance company wanting to do a "field visit," as they call it, let me give you some advice.
One: Make sure it states in your policy that it is required. If it is not required politely decline, and that's that.
Two: If you are required to give the interview do not allow them into your home. Arrange the meeting at a neutral third party location like McDonald's, or even your doctor's office. You are more comfortable at home, and therefore more willing to let things slip that can be used against you.
Three: Take someone with you to the interview. If you can, bring an attorney, if not bring a close friend of family member.
Four: Openly record the conversation. Buy a digital recorder, introduce everyone present and state the date, location and time of the interview.
Five: If they ask to take your picture, politely decline. If they ask to see identification require they show you theirs first.
Six: Request all questions they are going to ask you in advance. If they ask a question not previously provided to you simply reply "I'm sorry that was not on the list of questions provided to me." If they are asking information they have already or have already asked, inform them they just asked that question and refer to the answer previously given.
Seven: Agree to a specific amount of time. No more than 30-45 minutes. When time is up thank them and promptly leave.
Eight: Always correspond with the insurance company in writing. In this day in age, it is perfectly acceptable to require all correspondence be in writing. It is in the best interest of everyone involved. If you must speak with them over the phone record EVERY phone call. You can check the laws in your state, but most states it is legal as long as one person in the conversation is aware they are being recorded!
In these situations knowledge is power. If you are well informed they can't harass or bully you into hanging yourself. It's not an easy battle, nor is it right they are allowed to do it. It's unfair, disgusting, ridiculous, frustrating, and morally and ethically wrong. I don't know how those people sleep at night or look at themselves in the mirror. Unfortunately though, it is completely legal!
Miracle of all miracles on December 23rd, my initial application for Social Security Disability was approved! At that time, they informed me that they determined I became disabled on April 23, 2010 therefore I would be paid a sum of all the benefits dating from April 2010 to December 2011. Now, because I was collecting long term disability payments during that time I would have to pay back the "over payment" to the insurance company. (If this doesn't make sense to you let me try to clarify: instead of receiving Social Security from April 2010 to December 2011 I received payments from the insurance company. Since Social Security is sending a back pay check for that time I have to pay the insurance company back for what they paid me.)
Upon receiving award notification from Social Security I was advised by my insurance company that I had until February 25th to pay them back what I owed them. At the same time, I was advised by Social Security that my case was under a review board, they would reach a decision by March 30th and then they would pay the money out directly to any other agency or company owed that money i.e.: insurance companies and Worker's Compensation. I informed the insurance company of this, the February 25th deadline came and went and nothing happened. A few days later I received another notice in the mail with a new deadline requiring my repayment to the insurance company. This date was also before the March 30th deadline. I advised them again of the Social Security deadline, but when my check came for my March benefits there was a note where my check should have been basically stating they are cutting all benefits until they receive the money that is due to them. The same day, I receive notice from Social Security that the review board needed clarification on my account. When filing my initial application, the legal assistant who submitted my application had accidentally checked a box stating I was also filing for Worker’s Compensation. Before the final submission of the application the error was found and corrected. However, just to cover themselves, Social Security was then sending me an affidavit to confirm that I was not filing, nor did I have the right to file, for Worker’s Compensation. Due to this discrepancy there was a delay in processing the payment and the March 30th deadline would be extended.

I had tried for nearly two weeks to inform my insurance company of the extended deadline, but the one person in the entire company everyone seemed to think was the only person able to help me, was out of the office. (Where can I get that job? One that you’re out of the office almost everyday? That’s probably a better deal that collecting disability!) I decided before trying again I would call Social Security to get an update from them. When I finally got through and asked for the update I was placed on about a five minute hold. When the man came back on the phone he stated no money had been paid out yet, but that the review board determined I have a student loan that is now with the US Department of Education, and that since I technically owe the Federal Government money they will deduct that before paying out any of the Social Security. (To try and explain: my student loan was with a certain bank, I consolidated it with my other student loan with a loan company. Not long after the consolidation the government bailed out the loan company thus my loan was transferred to the US Department of Education. They promptly sold the loan back to the bank, which within the last sixty days has sold it back to the US Department of Education. I was under forbearance with the bank, and the loan company. To date, the US Department of Education was demanding a monthly payment which is literally 2/3 of my monthly income and informed me any lesser payments would be denied, so we were still working on an agreement.) So, when all is said and done, my student loan would be paid in full, the remainder of the money would be sent to the insurance company, leaving me with no check and a new debt to my insurance company of over $9,000.

With that news in hand I got a call back from the insurance company and they were a little too polite when she informed me that they can’t demand money from me that I do not have and starting with April, my benefits would be reinstated, and the benefits previously denied would be deducted from the amount I owe them. I don’t know why it took me telling them four times that I hadn’t seen any money from Social Security for it to sink in that I can’t give them money I don’t have. Despite a huge company, with probably thousands of employees, this one woman apparently is the only one who could assist in this problem…

I am not 100% what happens from this point on. I am making phone calls and am meeting with an attorney in a few days to discuss what my options are. This whole thing is a disaster and more importantly, a full time job. Our system is so messed up that dealing with it is enough to give even the healthiest person high blood pressure. For a system that is supposed to help people manage their health when they have no other options they seem to be doing more to make me sick from the stress than actually helping. The same goes with people working with you on paying down medical bills. They bully and harass you and handout so many fees. At this point I am sitting here with debt which adds up to more money than I will make in the next two years, and it just gets worse and worse. The system seems designed to keep you in this rut for good. I have had many people, my attorney included, say that at this point bankruptcy is my best option. I haven’t been able to bring myself to do it. I don’t like the idea of wiggling out of my obligations. I know that’s not the case, and have heard over and over again that bankruptcy was meant for people like me, in situations like mine. It’s not like I am sitting here with $50,000 of credit card debt! (Which for the record I have $0 credit card debt!) I went through the same thing before applying for disability, not wanting to be someone sitting around on my rear collecting a government check the rest of my life. But again that was set up for people like me, people in situations like mine. All I can say is the whole process is a huge, stressful disaster that can push even the most well grounded person over the edge! And I am at that edge, hanging on for dear life!

This is NOT a Fad Diet!

2012-04-09T21:19:00.000-05:00

I touched on a gluten free diet not being just a diet but a lifestyle change a few weeks ago. Despite that post I feel I have more to say on the topic, and this being my page, and having the ability to write about whatever my little heart desires I am going to write about it again...

Since starting this blog I have been experimenting with recipes again, which has led to more and more people casually stating they too should try a gluten free diet. I am not trying to discourage anyone from trying a gluten free diet. In fact, the more people that go gluten free the easier and cheaper my food options become. However, I have come to the realization in the last few weeks that going gluten free has become a fad. A fad like those awesome stripped toe socks I wore in high school with my flip flops and tennis skirt! Gluten free being a fad is not only extremely irritating but can potentially make all the progress we have made in more widely available food options obsolete. Call me paranoid but I have nightmares that the "ease" (I use that term quite loosely) of attaining gluten free foods will cease to exist and we'll be thrust back into a world of eating cardboard and plywood!

As the saying goes "just because you're paranoid, doesn't mean someone isn't out to get you!" There are a number of examples of fad diets and even allergies that have lost their "popularity" and faded from our minds. A few years ago you couldn’t find a peanut on an airplane and the "South Beach Diet" stamp was on foods up and down the grocery aisle. It's just in the last year or so that people have started giving up on their "no high fructose corn syrup" diets. Everything from vegan-ism to the Atkin's diet eventually fades from the mainstream leaving behind the few faithful followers. If gluten free diets are in fact becoming a fad, it will leave patients with Celiac Disease as the final faithful followers. It will be like going back to technology that was popular in the early 90's.

The only idea I have to counteract this potential assault on how "easy" (again, using the term very loosely) my diet has become is to educate as many people as I can about the diet. So much so that I am starting to sound like a broken record standing on a soap box. I think all gluten free dieters, at least the serious ones, need to band together to make sure we aren't taking one step forward before we take three steps back. You can do this by doing things, like calling Lays and informing them that your (or my) favorite barbeque potato chips are now off limits because they changed their recipe to add barley malt, or supporting company's that change a simple ingredient so a product is gluten free, like Chex cereals. We are the consumers and if we raise enough of a commotion companies will listen. After all, they are in the business of making money! Another important step is discussing with stores about stocking more gluten free options. If you're willing to buy it, most places will try to sell it to you.

Going beyond contacting retailers and manufacturers, educating the public who fall for fad diets is also really important. I don't know how many times people have said to me "hey, I was thinking about trying a gluten free diet." I can't help but think that 99% of the time they are not serious, simply jumping on the rice cracker and tapioca starched bandwagon. There appears to be this vast misconception that cutting gluten from your diet it like cutting fat, calories, sugar, high fructose corn syrup, caffeine, fast food, carbohydrates, and dog food. Okay, maybe not so much the dog food! Still, I cannot stress it enough GLUTEN FREE IS NOT A DIET IT'S A LIFESTYLE!!!

Two of my favorite books regarding Celiac and gluten free diets are Living Gluten Free for Dummies by Danna Korn and Wheat Belly by Dr. William Davis. They both address various medical conditions that can, and have been treated by going on a full gluten free diet. Everything from autism, diabetes, heart disease and rheumatoid arthritis. In some cases, patients not only lost tens to hundreds of pounds, but showed an incredible amount of improvement in their overall health by being able to stop taking certain medications. In rare cases, a few people have even been essentially cured of their ailment. The key to the success, as pointed out by both authors, is a complete dedication to going gluten free. That doesn't mean cutting back on how much Wonder Bread and Twinkies you eat, it's a full commitment. All or nothing.

For some reason, that is the key that seems to be missed by most people without a direct medical problem requiring a gluten free diet. They seem to think they can cut out half of the gluten in their diet, or not eat gluten on Thursdays and Sundays between 12:00 am and 3:57 pm. I like to look at it this way: if something is poisoning your body, if it is preventing your body from functioning properly and causing you pain, weight gain, and a host of other problems, then don't you want to give it completely up? You wouldn't realize you're stomach problems and hair loss are from the arsenic in your morning coffee and keep putting it in the coffee. And if something is poisoning your body, how will you truly know without removing it from the diet? Unfortunately, today's medical technology does not allow testing for a gluten sensitivity or intolerance, it is done largely by trial and error. You cannot do trial and error if you don't do a proper trial!

I realize that there is a lot of hesitation in embarking on a gluten free lifestyle. When I began mine, I had little cartoon pizzas and doughnuts circling the top of my head. It's a momentous undertaking and gluten items will pop out at you at every corner disguised as over the counter medications and chicken gravy. But embarking on such a lifestyle cannot only change your life, but prolong it! You can feel better, have more energy and be more active all by cutting out that pesky little protein. If you are faithful and diligent on a gluten free diet and still feel tired, or have high blood sugar, or are struggling with weight loss and you want your fried chicken and artificial bacon bits back I won't stand in your way. But like the cliche says if something is worth doing, it's worth doing 100%.

Perhaps I shouldn't take the gluten free fad as an insult, but I do. I see it as making a mockery of my lifestyle. I would still encourage anyone who wants to see if it will help them. But if you're going to do it, do it right!

My Life With Chronic Pain

2012-03-20T23:02:00.000-05:00

Living with Celiac Disease means living at a higher risk for other autoimmune diseases. I, unfortunately, have two others: autoimmune pancreatitis and rheumatoid arthritis. I am younger than the average RA patient; this disease does not discriminate and can still strike at most any age. Without a doubt, RA is the hardest condition that I have to live with each day. It also seems to be very misunderstood by those around me. For those who may not know about RA it is an autoimmune condition that causes the body to attack it's joints. This causes inflammation and pain in the joints which and can lead to permanent joint damage. It can affect any joint from your jaw to your toes; it also causes exteme fatigue and muscle weakness. The disease often goes into remission where no symptoms are present, when the disease is active, it is referred to as a flare.

It's easy to read a description like that; however, the ins and outs of the disease may not necessarily sink in. Having to live RA day in and day out is a very trying feat. The first symptoms I showed were what I called "sausage fingers". My hands were swollen to twice their normal size and I could hardly hold onto anything. Simple every day tasks such as tying your shoes or even holding a fork were unbelievably painful. Slowly I started to notice pain and swelling in other joints. Walking became painful, stairs were excruciating, even chewing hurt. At the same time I became extremely fatigued. Fatigue is not just a symptom of not getting a full eight hours of sleep; and I get consumed by it. It makes me not feel like doing anything. I don't even want to get out of bed to eat, I just want to sleep. Getting up and dressed or doing anything productive seems impossible.

Since my RA diagnosis a few years ago, I have had more than one severe flare. One in particular that stands out; it was the first time reality really started to sink in... That the disease was limiting my ability to function like a normal, healthy person. After church on a Sunday morning I went with some friends to Outback Steakhouse for lunch. I was starving and ordered my favorite salad. When the food arrived I tried my best to eat but I just couldn't. The silverware was to heavy for me to hold, my fingers were in excruciating pain trying to stab pieces of lettuce. It took all the strength I had not to completely lose control while I was sitting at the table. I don't think I even ate ten bites of salad before I gave up. By the last bite the fork was so heavy and my fingers were hurting so bad it made my hand shake; my bite barely made it to my mouth. I waited until I got to my car and then the tears came. I felt frustrated and hopeless.

It is events like this that are overlooked when discussing rheumatoid arthritis. Being in my twenties and having the outward appearance of good health makes it hard for some to grasp my condition. I have had to learn that when I start to get fatigued or when I start to have pain and swelling, that it is essential for me to slow down or even stop what I am doing. For some people it gives the appearance of being lazy when in reality, I am quite literally preserving my mobility. If the damage my body is causing to it's own joints gets bad enough I will loose function of those joints. Joints like fingers, wrists, hips, knees, and ankles. Loosing function of those joints meaning I can loose my ability to write, walk and even grip things with my hands. Considering the fact that the disease began at such an early age potential loss of mobility will also strike at an earlier age if the disease is not controlled.

Part of my treatment plan to prevent further progression of the disease are immune-suppressants. One particular medication is methotrexate, this medication requires giving myself weekly injections. Methotrexate, in larger doses, is used to treat leukemia; the side effects are similar, though not as extreme in lower doses. This is included but not limited to hair loss, brittle nails, and being more susceptible to other infections. I have been on it for two years now and I still get hand fulls of hair in shower after my injection. It has also caused me to have acne worse than I ever had, even when I was in high school. It is severe enough it has begun to scar my face. Not many things are more embarrassing than terribly blemished skin at twenty-five. My skin even starts to bleed if I accidentally scratch my face.

Living with rheumatoid arthritis is a daily battle. Sometimes it's a battle just to get out of bed in the morning. And everything from the symptoms to the treatment cause a host of pain and frustration. The day to day pain can be unbearable at times. It's triggered by everything from stress to the changes in the weather and the only thing that can be done is to suppress the immune system and treat symptoms. My general prognosis is years of medications, pain killers, surgeries to remove joint deformities, joint replacements, and canes and wheel chairs. I already have joint damage in my right thumb that will require surgery to correct. For now I have put it off until I loose complete mobility in my thumb, but it is inevitable. Living with RA doesn't usually lead to a bright happy future. The harsh reality is that it is part of the long painful road that I call life.

2 Essentials to My Survival

2012-03-15T14:42:00.000-05:00

When I wrote about support systems a few weeks ago there were a couple things I left out that I think are essential to survival in any situation in life. It seems in today's world both have become taboo subjects, but I would not have survived without either. To add a little bit of background, when I was still working, the company put me in a horrible situation. I had decided to report harassment and as a result was ostracized and bullied to the extreme. So much so, that my doctors and I agree, the stress I was under was more than my body could handle. I was put on long term disability which has now resulted in my approval for social security disability. I had people in my life supporting me through all this but two things specifically allowed me to survive.

First and foremost was my faith, and the faith of those around me. When you're struggling with anything in life, from stress to chronic pain, you need a positive outlet. When I was living in Colorado, a few months after my Celiac diagnosis, I spent three separate weeks in the hospital between Thanksgiving and New Years. During that time, I can count on one hand the number of days I did not receive a card in the mail from my parents’ church in St. Louis. These people had never met me before, and had only known my parents for a few months, but I received over 100 cards in about a six week period. I often think about that and wonder what people do when they don't have that type of support system in their lives.

It was during my work situation that I came to understand what Wednesday night Bible studies were for. I was so stressed out, getting sicker by the day; on more than one occasion I thought I was beyond my breaking point. But I had a place to go where everyone knew my name...everyone was happy to see me and genuinely cared about me; this time brought fresh breaths back into my life. I had a place to go for just an hour or so in the middle of the week where I could forget about the hopeless, upside down world I felt my life had become. It was one positive in a never ending ocean of negatives.

The second resource I recommend is seeking professional help. This especially seems to be a huge sore subject for people. As if seeing a psychologist makes you weak. To be honest, I used to carry that same belief and it was the doctor that gave me the Celiac diagnosis who encouraged me to go. She said "no one can go through years of illness followed by an immediate, total lifestyle change and do it alone." I was a little hesitant to go but found that seeking a neutral third party outlet was incredibly beneficial. When you share your fears and stresses about health and life with friends and family you typically get the same response: a "you can do it" attitude and a lot of "I know it's hard, but hang in there". There isn't anything wrong with that, in fact it is our job as loved ones to provide unwavering support. However, having someone to vent to that you can share your biggest fears and concerns with who isn't going to give you a hug and say "don't worry about it," is crucial. We need someone who is there to give a little perspective.

Through my illness and work situation, I have gone back time and again to talk to someone to gain perspective. It's not something I really even shared with more than four or five people, but it was central to my survival. I've learned ways to handle situations; like when you feel you're at your breaking point every time you open the refrigerator or walk down the aisle at the store not finding anything to eat because you feel trapped by your diet. Or, how to keep your spirits up when you wake up in the morning and before you even get out of bed your joints are aching and throbbing. And, even how to cope when you're stuck in what feels like a hopeless situation and you need stress relieving survival skills.

I would encourage everyone, regardless of situation, to reach out to both support systems. The skills you learn extend well beyond coping with serious illness or stressful situations. Learning to manage the stress in your life can considerably alleviate illness as well! Everyone needs a little help at some point in their life and getting that help and learning those skills can only benefit you.

Not Just an Intestinal Disease

2012-03-06T15:37:00.000-06:00

Celiac Disease has the following stigmas; one, that it is purely an intestinal disease and two, that it is just a severe allergy. Both are quite simply, untrue. Celiac is an auto-immune disease with symptoms that affect a wide variety of body systems. From dental to psychological to gynecological...this disease can quite literally take hold of your life. Celiac Disease has been linked to other conditions including autism, diabetes, and other auto-immune conditions. A Celiac diet is very different from an allergy diet. Some food allergies are mild and the food can be consumed in small portions; this is not, at all, true of a Celiac, gluten free diet. Severe allergies with small consumption can cause anaphylaxis and death. In contrast, Celiac disease isn't likely to directly cause death; more likely than not it will cause intestinal cancer, typically lymphoma.

These stigmas have caused a whole lot of misunderstanding about the disease. From my personal experience, Celiac has caused all types of symptoms and complications. Successfully coping with the disease and the diet is dependent on having a good understanding of what is going on in your own body.

As I have mentioned in a previous posting, I am convinced that my Celiac disease became active when I was fourteen. I had been having chronic sinus infections and eventually had to have surgery. That surgery, I believe, is what triggered my Celiac to become active. I didn't have intestinal symptoms until six years after that surgery, but my life became very different in other ways.

I did continue to struggle with other health problems, to say the least. After my sinus surgery, instead of chronic sinus infections, I had repeated bouts of strep throat and eventually became a carrier. These bouts went on until I had my tonsils and adenoids out at sixteen. After my strep, I had repeated cases of bronchitis until they removed my lungs. Ok, they didn't remove my lungs, but there was still a pattern! In addition to my sinus infections, strep and bronchitis bouts, I also began suffering from endometriosis and hypoglycemia. I saw many different doctors for the endometriosis, all of which, wanted to perform surgery, as this is the only way to officially come to a diagnosis. However, I put off the surgery until I was twenty-one and had a doctor who I completely trusted and who I was comfortable with. In high school it wasn't long before the school nurse and my mother got to know each other quite well. It even got to the point that when I got sick they would send me home without permission because they knew my situation. There were other little problems I had as well. I could not grow my nails out, they would break and flake off. My hair was damaged and brittle and wouldn't take color very well. These things seem very little in the grand scheme of things but they were very bothersome and frustrating for me.

When thinking about those days, nothing sticks out more to me than the mental or psychological problems. Part of the reason I am convinced my sinus surgery made the Celiac active is because afterwards, for the first time in my educational life, I began to struggle with most every subject. I remember countless occasions from the eighth grade through college when a teacher or my parents or someone would get on to me saying things like, "you're smarter than this" and "you're just not applying yourself". And on most of those occasions it wasn't that I was not trying, it was that I really did not understand. I know this doesn't explain away all the things I did growing up, but nothing frustrated me more than everyone assuming I was lazy or didn't care. To be honest, by the end, after years of going through that frustration, I began to not care anymore.

In hindsight it's easy to say we should've known something was going on. But even eleven years ago not much was known about Celiac, and the fact that I had no gastrointestinal symptoms makes the thought of reaching a diagnosis back then unlikely. I have noticed that since starting my gluten free lifestyle I retain knowledge and can problem solve much better than I ever could before. It seems incredible to me that something as simple as a grocery store doughnut could cause such a wide variety of health problems from brittle hair to cancer. My doctors have told me on more than one occasion that I am stricter on my diet than I need to be. After thinking back on my teenage years in the manner I just described, I think anyone would be just as strict!

Transitioning to Gluten Free

2012-02-27T18:35:00.000-06:00

When beginning a gluten free lifestyle you have to train yourself to read labels and prevent cross-contamination. It's like forgetting everything you know about products, food, and cooking and starting over from scratch. It even goes as far as getting rid of certain appliances and starting with brand new to avoid contamination. There are things that you don't even realize are affected and it's an overwhelming and daunting task to undertake.

The first major lesson I had to learn was to read labels. In the beginning I wanted to read the labels for the products that seemed most likely to contain wheat, barley, and rye. Those were my first two mistakes. Now most people know gluten is a protein found in wheat, barley and rye but not everyone realizes to also check for the less common grains and the "hybrid" grains that also contain gluten. These include: malt and malt flavoring which is made from barley (maltodextrin is fine), spelt, kamut, graham, triticale and oats (see my note for oats at the end of the post). The second mistake was that specifically wheat and malt are ingredients in a vast array of unsuspecting foods. Malt tends to be a key ingredient in most cereals. It's responsible for making things like Corn Flakes off limits. My favorite is finding wheat as an ingredient in cooking spray. I mean really? Other un-obvious foods include: prepared pudding cups, shredded cheeses, spice mixes, sauces (salad dressings and condiments), and boxed rice dishes. The moral of this lesson is even if you think there is no way a certain product contains gluten check it. And don't check it once and let it go. Companies change ingredients and recipes all the time. In the past few months Lays changed the recipe for some of their chips and some that were gluten free aren't anymore.

The next lesson I had to learn was that certain appliances and cookware are more prone to cause contamination than others. Metal pans like cookie sheets and cake pans and baking stones do not get completely clean so it is not a good idea to use them for both gluten free and gluten containing foods. Wooden spoons are another thing that do not come completely clean. This goes for bread machines too. As long as items are washed thoroughly things like plates, silverware and glassware including glass casserole and serving dishes are safe. If you live in a household that has people consuming gluten I recommend having separate sections for the foods that have had gluten on them and those that haven't.

Another unsuspecting place you can come into contamination are in medications and beauty products. Check labels on all over the counter medications you purchase, even liquids. Most pharmacies, including Walgreens where I go, will mark your account as having to have gluten free. People can still make mistakes though so double check the inactive ingredients. If in doubt there are companies that will custom make medications gluten free. It's going to be expensive but beats the alternative. Gluten products are also used in beauty products from mascara and lipstick to shampoo and conditioner. Lip products are the most likely to be accidentally ingested so they are the most important to ensure are gluten free. Using hypoallergenic brands can help eliminate some of the concern, but it's always best to double check. Research has not found concrete evidence that things like shampoo or mascara can cause a reaction. I know people that have had a reaction, though I have never have. I still choose to use all gluten free products. It's always better to be safe than sorry!

Keeping track of all the labels you have to read and the various grains you have to watch out for is difficult. I carry around cards with grains that are acceptable and grains that are not so I have a cheat sheet. You can purchase these online from various gluten free groups, find a list in every issue of Living Without magazine. If you live in the continental US I have custom cards I created that I would be happy to share with you, I can only send five to one person, so if interested you can send me an email.

OATS: Oats are a huge subject for debate among the gluten free community. Oats in and of themselves do not contain gluten, however, oats are processed in the same grain elevators and stored in the same silos as wheat which causes contamination. Specialty oats are available that are grown and processed to avoid contamination so they are safe for a gluten free diet. Some doctors and patients alike insist that regular oats are acceptable. I experimented with it and after a few months on a consistent gluten free diet I tried oats and I had a reaction. I have thus given oats up except those specifically intended to be gluten free. Though other people claim they do not have a reaction I do not recommend anyone eating them, but at the end of the day it is your choice!

Being Defined by a Disease

2012-02-22T21:52:00.001-06:00

One of the biggest struggles I face on a daily basis is one that I could not have and did not anticipate. I have found that, especially among young adults, that I am defined solely by my health complications. Having moved to a new place right after being diagnosed with Celiac and then RA I did not have a close knit group of friends and I have found it extremely difficult to build many meaningful friendships with people my own age simply because of my health issues; this is something that has really come to bother me. Perhaps it's from introductions when I first meet someone; the inevitable question I have come to dread is, hands down, "so what do you do?" I have debated for almost two years now how to properly answer that question. The answer doesn't seem terribly complicated: "due to some serious health problems I am on disability", but for some reason this response is a huge obstacle a lot of people can't seem to get past.

I have tossed around a number of theories around as to why exactly this phenomenon occurs. One theory that seems to fit is that people who have never experienced serious medical problems cannot relate. It's fair to say that at twenty five I have had to experience things that people twice my age have not and will not have to experience. Some experiences are hard for people to look past, especially when they cannot relate. Though I cannot blame them, it is an extremely frustrating life experience.

It sounds like the ending to a sappy Hollywood movie, or a cliché, but being sick has made me look at the world differently. It has made me understand what is truly important in life and what isn't. That view of the world is usually reserved for those at the end of their life or those who have faced what seemed to be the end of their life. Again, it sounds like a cliché but it's absolutely true! Taking this into account, sometimes I have a hard time relating to those who do not appreciate and understand the truly important things and people in life.

Understanding why I have a hard time trying to meet new people simply because I am defined by a disease doesn't make it any less frustrating. Sometimes I want to respond to people and say, "I am NOT just a Celiac patient, or an RA patient...I am an actual person who is interested in books, music, movies, politics and life itself," though I really doubt that would have any affect.

Another one of my theories, not just with meeting new people but with members of my own family, is people thinking I am just making up all of my complications. This is especially true for people whose health problems aren't outwardly obvious. When I have a flare of my pancreatitis or am accidentally glutenized (yes, I am making up words) it's not something you can see. If I had a dime for every person who has said to me "well you don't look sick," I wouldn’t be relying on Social Security! I am always tempted to respond, "I guess it's a good thing my disability isn't based on appearances!" I do not know the perfect way to respond to people who do not believe that I have serious health issues except to say that I do everything in my power to remove myself from situations in which I am surrounded by people who not only disrespect me but who disrespect my diseases.

Unfortunately, there is nothing that can be done with these types of people. The people who don't care, or try to care, about the strictness of a Celiac's gluten free diet, are sadly and unfortunately stubborn and hard headed. They're convinced we are all a bunch of hypochondriacs with doctors who love nothing more than to support pharmaceutical companies by writing an endless number of prescriptions. I have family members who have seen my joints during RA flares and still choose to believe I am making it up. As much as I would like to smack them upside the head until they get it, it's not worth the resulting assault charge. And I am not sure they do real gluten free food in prison! :) As hurtful as it is to especially have certain family members not acknowledge the seriousness of my health, the reality is that I cannot change their mind or their actions.

I often ask doctors and people I meet who have serious health problems how to respond to those who question my health problems or treat me like I have the plague; so far, everyone I have asked has given me pretty much one of two answers. One: People just don't know how to relate so they'll ask you how you're feeling to be polite then move on. And two: Some people just don't get it and you can't force someone to understand. Neither answer is very satisfying...nor do I know who to ask to get a better answer.

I would be lying if I told you it was easy to let things go when you know you are being unfairly judged. It's not easy to do, and sometimes it really gets to me and makes me incredibly mad. I have found it helps to tell myself anyone who judges me or shies away from me isn't worth my time anyway. My beagle Barclay helps too, because when I don't feel good he senses it and won't let me out of his sight. I don't think I will ever find an answer because I don't think one exists. Being in this position, the only thing you can really do is rely on those who know that genetic diseases are not contagious!

Symptoms that Allude Diagnosis

2012-02-18T00:38:00.000-06:00

As I said before I basically have had medical problems my entire life, however, I do not think my Celiac became active until I was about fourteen, after I had sinus surgery. If that is in fact when it became active then it was active for approximately six years before my diagnosis. For most of those six years I did not have typical gastrointestinal symptoms. Instead I was chronically ill, became hypoglycemic, developed endometriosis as well as various other problems. Between such random symptoms and the lack of knowledge about Celiac Sprue it is no doubt that they didn't find that diagnosis for so long. Once I began showing symptoms I was lucky in that diagnosis took about four months. Within those four months I still began to question whether it was all in my head. Having atypical symptoms of anything is one of the most frustrating aspects to health problems and can cause you to second guess yourself.

I started suffering from severe joint pain and swelling a few months after the Celiac diagnosis. They ran blood work for rheumatoid arthritis but it was normal. I tried for months to get in to see a rheumatologist but couldn't find one that would see me since my blood work looked fine and I was so young. It wasn't until I moved to St. Louis and received a referral from my gastroenterologist that I was able to see one, and a good one. She did the blood work but also did a physical exam, took my history, and had x-rays taken. Despite the atypical blood work she diagnosed me with rheumatoid arthritis and began treatment. The time between my diagnosis and when my symptoms began was incredibly frustrating and I started to wonder if I was crazy.

Just this last week I have found myself in a similar frustrating position. A few days ago I had an appointment with my gastroenterologist because I have been having severe heartburn and vomiting blood. I was concerned, of course, which is why I scheduled the appointment, and I assumed I had a bleeding ulcer and/or a hiatal hernia. However, I wasn't as concerned as my doctor was who sent me directly to the hospital and had me admitted. She was concerned of course due to my past medical history, and the fact that I have recently been having headaches severely low iron, which can be a sign of anemia and blood loss. When I arrived at the hospital they immediately ran blood work and scheduled an EGD for the next morning.

I fully expected the results of the EGD to show something, but unfortunately they were absolutely clean. It's beyond frustrating, especially considering I spent a night in the hospital! I know I am not crazy and I know that that my symptoms are real, and I know my doctors believe me, but if they can't find a cause what else can they do? I am stuck back in the limbo of knowing there is something going on and the fact that my doctors cannot find any evidence of a problem.

Where I go from here is more doctors appointments, more tests, and more convincing myself that I am not crazy and something really is going on. I have no idea how long it will take or if I will get better or worse before it gets figured out! Thankfully I have an excellent team of doctors that I fully trust. It doesn't take away from pain and frustration though, but as I have learned many times over now it gets resolved eventually if not by diagnosis than by healing itself.

I think the worst aspect of the atypical symptoms that seem to allude a diagnosis is patience, especially when you don't feel good. You have to focus on the present. You can't dwell on how long you've been sick or how you'll feel tomorrow. I have tried and all it does is drive me crazy. It sounds like one of the world's biggest cliches and something I am currently telling myself, but there is so much truth in it.