Things You NEVER Say to Someone With a Chronic Illness

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

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!

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

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

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

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.