bloggingchronic illness

Top 10 Posts Of All Time

top 10 posts of all time

It is so hard to believe that A New Kind of Normal has been in existence for over 10 years (almost 10 1/2!). Since thing were so crazy last year, we never really got to celebrate the 10 year mark, I thought I would take a day out of Bloguary to earmark the top 10 posts of all time here on A New Kind of Normal (well, at least they are the top 10 posts for the last 10 years)!

Here they are counting down from 10 to 1:

10) Things To Say (& Not Say) To Someone With Chronic Illness

9) What Is In Your Flare Survival Kit?

8) Mission Aborted: When Routine Procedures Go Wrong

7) Fighting The Tube: Recovering From Bowel Obstruction Surgery

6) Surgery Survival Kit

5) The Bowel Prep Survival Kit

4) One Little Word For 2014: Fierce

3) A Frozen Birthday & Bedroom

2) My Hair Hurts: Dealing With Tactile Allodynia & Fibromyalgia

and….drumroll please…..

1) The First 7 Days After Bowel Obstruction Surgery

 

I Am Bold

It is hard to believe that it has been over 10 years since A New Kind of Normal was born! So many amazing – and challenging – things have happened along the way but I am excited about what is going to happen this year and hopefully for many, many more years after!

Bloguary Day 9

Here is to Living Boldly for another 10 years!

bloggingchronic illness

My 13 Goals for 2018

Blog and Life Goals for 2018

Create a blogging schedule:

As I have noted many times in the past, I am a creature that thrives in structure (which doesn’t always jive with chronic illness) so as one of my first goals of 2018 I want to create a loose enough schedule in that it gives me just enough structure but also provides that bit of wiggle room that is always a necessity when it comes to living the chronic life. Tuesdays will be posts specifically about living with chronic illness which is obviously the foundation of this blog. They may pertain to certain struggles common to illnesses. They may be about new treatments on the horizon. They could even come from caregivers. Wednesdays will be Chronic Style posts. These posts will involve beauty, makeup, style, and fashion. They may include makeup tutorials or makeup tips and tricks. They may include outfits of the week or advice on how to dress both comfortable AND cute. Thursdays will be more lifestyle type posts. These posts may include DIY home projects, recipes, etc (all spoon friendly of course). They may include marriage, family, and parenting topics. This is kind of a “catch all” category. Fridays will be focused on faith and devotions. I used to have a series called “Friday Words of Faith” and these posts will be very similar in nature. They will often feature songs that speak to the heart of making the journey through life with chronic illness. They may cover tough questions such as “Where is God when I am sick?” While I am a Christian and many of the posts will be specifically Christian-based, there will also be other types of inspirational posts to help those who may not follow a particular faith tradition. And lastly, Saturdays will be for video content! Videos will not go up every week – at least in the beginning. Most of the videos will be Chronic Style related but others may be more fun, family oriented with some fun challenges or vlogs. There will also be Q&A style videos included. I know that many YouTubers create blogs as an extension of their channels but in my case, I am created video content as an extension of my blog. I do not plan to necessarily create a YouTube channel but it will basically act as a hosting for my videos. I will upload them there but will also embed the videos in posts here at A New Kind of Normal so you won’t have to visit anywhere else to be able to catch up on all the content. Wow, that was a long first goal!The other’s aren’t as long I promise!

Be more active on social media by actually having conversations! 

Does anyone else miss the days when you could post a question on Twitter and actually get an answer? Or actually receive a comment on a blog post that you worked so hard to write? Long gone are the days where social media actually seemed to be social versus a sea of ads and sponsored content (neither of those things are bad but in much needed moderation please) and these platforms don’t do you any favors by constantly changing the algorithms that seem to constantly bury any real content. I remember when I could spend hours chatting on Twitter and Facebook and making true, honest connections with others. I asked this question on Twitter the other day and I had several people respond very quickly that they missed the good ol’ days as well. I’ve decided that if you want to see something you, sometimes you need to be the change. I hope you will help change this with me by joining in! Be sure to follow me on Twitter, Facebook, and Instagram! I have a Snapchat but I can’t figure it out for the life of meand not entirely sure I actually need it. What are your thoughts on Snapchat?

Commit to sending at least two snail mail letters or cards a week.

Long before we lost the art of conversation online, we lost the ability to communicate with a good old fashioned hand written letter. Sending an email from the heart can be nice but nothing beats something hand written, am I right? Just like I am taking on the role of trying to be the change to bring back conversation online, I want to bring back the lost art of snail mail. I want to send a minimum of two letters or cards to friends and family a week. If you would like to be a part of my snail mail list, please shoot me an email! I am working on setting up a PO Box if you would like to join the movement as well and maybe want to drop me a bit of snail mail every once in awhile. I would greatly appreciate it! As soon as I have the PO Box up and running, I will have that information added to my Contact Me page.

Actually do the things that I pin on Pinterest.

 I am honestly scared to look up how many pins I have actually created across the many boards I have created on Pinterest. What is worse is knowing how few of those pins I have actually set out to accomplish. That, however, is going to change in 2018. I am starting a series called “Been There, Pinned That” where I am going to share pins that I have actually completed whether they be home projects, recipes, makeup looks, or outfits I have recreated. Ok – I finally got brave and checked out how many pins that I have saved. Are you ready for this? Drumroll please . . . 5,801. That is a lot of time spent on Pinterest saving beautiful hairstyles or lovely home decor I’ll never have. When I popped over to check my number, I did notice that Pinterest has actually added a feature to each pin to mark whether or not you have tried it! You are able to attach a photo or note! How awesome is that! That makes me even more motivated to succeed in this goal. How many pins do you have saved on Pinterest and how many have you actually done?

Work outside of the home at least one day a week. 

I am lucky enough to have a space in my home that my husband is allowing me to convert into my “Babe Cave” which will give me a place to have my makeup storage and my vanity so I have a place to sit down and get ready but it will also give me a place where I can sit down to blog, read, and hopefully film. It is currently a work in progress. My desk is pretty much set up but the rest of the room is a disaster. We are going to take the bed out of the room and put in in a futon instead which will really open up the space. I will definitely do a room tour when I am done! So, while I have this wonderful space that I can work in (in addition to working from any other room in our house), I want to get out of the house at least once a week to work to get the creative juices flowing. We used to have a little coffee shop on Main Street (I live in a quaint one stoplight town) but unfortunately it has closed down so now I need to find a new place to work! I am determined so it will be like being on a treasure hunt to find the location of the hidden fountain of creativity located somewhere in our county!

Do my hair and makeup at least 4 times a week even if I never leave the house.

I have come to the conclusion that if you want to be productive, you need to get yourself put together. Let me rephrase that. If I want to be productive – truly productive, I need to get myself put together. I have a hard time getting motivated to be creative in my Jack Skellington pajama pants, my old glasses, and a messy bun. Granted there are some days that call for my messy bun and Jack Skellington because my body has nothing to offer the world and to merely exist is about all I have in me. However on the days where I do have the spoon supply and I have some writing, filming, or creating I want to do, I need to take the time to fix my hair and put on some makeup. This year is all about reclaiming my ability to feel spunky, audacious, and fierce . Plus if I am putting on makeup but not leaving the house, that means I can play and try out the wildest, must fun colors in the palettes.

Spend at least 45 minutes of quiet time each morning. 

Mornings are often a rough time at the Miller house. None of us are morning people so there is usually a lot of grumbling and grunting versus intelligible conversation. To get my mornings off on the right start, I want to spend it with the One who created me. I want to dedicate at least 45 minutes to prayer, devotion and maybe a little music (I know I said quiet time but you know what I mean). Abby and I got a digital piano for Christmas and after I brush up on my piano skills (it has been awhile since I have played), I am hoping that I can incorporate some time for worship in with my morning routine.

Life & Blogging Goals for 2018

Another routine I want to make a priority this year is getting physically active.

My chronic illnesses and adhesions make it difficult to be as active as I would like but they don’t make it impossible and I need to do my part to find out what those activities are that allow me to be active without turning myself into the tin man for the following week. I watched my parents struggle with their weight my entire life and I don’t want that to be the same for Abby. I want to be a positive role model and keep my weight and muscle tone in check as much as I possibly can. This morning I actually tried out a Tahitian Cardio workout and really loved it. It was a lot of fun and it made me feel really confident and sexy as I completed the workout and it was only my first try so I am really looking forward to trying it out again and if the workout can give me a body like those ladies leading it, I will power my way through it. My thick incision can run right down the middle of those six packs those ladies were sporting! LOL.

Complete the 100 Pushups, 200 Situps, & 200 Squats Challenges.

These are fun little challenges to add to your workout routine and add a little bit of fun competition with maybe your friends or loved ones. I know as a spoonie these challenges may seem like a lot but if you research the challenges, you actually work slowly to build up to those numbers and I can easily set my own pace. For example, for my first day of the Squat Challenge, I have 18 squats to perform and they are broken up into segments with rest time in between. There are many different types of apps out there for both IOS and Andriod phones as well as challenges you can find online and print off but I am using the Zen Challenge Series and I purchased the all in one bundle on iTunes to share with my husband as he is on a weight loss journey as well.

My husband and I will have a non-negotiable weekly lunch date. 

2017 was an exceptionally hard year on our marriage (you will hear a lot more about that in upcoming posts). Now, more than ever, it is important that we are very intentional in making time for each other. We are seeing a counselor who has the best name in the world – Dr. Miracle (I am totally serious) who is phenomenal and actually has a lot of experience working with chronic pain patients (back in Georgia he worked at a co-op practice where there was a pain management specialist, hiimself (a counselor), a physical therapist, and one or two other specialists of one form or another) so he has been able to add some very valuable and practice insight to help John and I on our journey of healing. In addition to committing to our “date” with Dr. Miracle, we need to commit to a weekly non-negotiable date with each other. We chose lunch because it seems to be the easiest and with the least amount of interruptions when it comes to our lives with his work in ministry and my work with multiple chronic illnesses.

In addition to dates with each other, we will have at least one “couple date” a month and I individual girl time/guy time a month. 

We are both all about holistic health and while we are working really hard to be healthy as a couple in spending a lot of time one-on-one, we also know that it is very important and healthy for us to spend time with others both as a couple and as individuals. We need to spend time with other couples for fun and fellowship but also for support. Marriage is hard and it is important to have other couples who are also in the same boat that can offer support for the day to day life of a married couple. It is also important to have individuals that you can go to for support. Sometimes there is nothing more refreshing than some quality girl time (can I get an amen?!). It is nice to have someone where you can feel like you can talk about anything and still feel loved, supported, and encouraged. So as one of the goals of 2018, we need more of both.

Complete simple mini-house projects on a  monthly basis!

We have some big projects that are taking place around the house this year such as adding a second bathroom (FINALLY! HALLELUJAH!) but there will also be smaller projects that will be done throughout the house such as the Babe Cave renovation or making over our master bedroom. I want to show off some easy DIY projects to show that we can make a space feel like it is ours and have a place where we find comfort, solace, creativity or whatever it may be. I think it is important to share those little tips, tricks, & secret finds and I look forward to sharing them with you!

Embrace my flag and wave it proudly. 

I know this statement sounds completely nutty but I promise it is not. I will go into a lot more detail in an upcoming blog post but an activity that John and I recently participated in was called The Flag Page. It is not a personality test but it helps you to see how you succeed in life, what motivates you most and how you’re different from the people close to you. It helps you to understand what you value the most about yourself such as I learned that some of the things I value the most is my creativity, being unique and marching to my own beat, and being a deep thinker. When you do The Flag Page with a loved one, it helps you better understand what motivates them and what they value the most and therefore helps take your communication to a whole other level. This is just a brief description and like I said, I will be going in depth in a post coming up very soon but as one of my goals in 2018, I most definitely plan to be proud of who I am and what I value the most instead of hiding it.

January Month of Blogging - Bloguary Day 2

Images: IvoryMix

chronic illness

avoiding cross-contamination when you have celiac disease

May is Celiac Awareness Month so it is perfect time to build on to my post with 5 insider tips when you are newly diagnosed with celiac disease. There is so much to learn when you change over to a gluten-free lifestyle and are living with celiac disease and it can be totally overwhelming at times. Today’s round up of tips for living with celiac disease focus on some little things that are often overlooked that can lean to some painful gluten cross contamination.

Here are 5 tips that you may want to know when you are living with celiac disease:

1- Purchase a second toaster specifically for gluten-free use.

I am so glad I had met with that dietician or I would have never thought of this! Putting gluten-free bread in the same toaster as regular bread is just asking for trouble. Think about all the crumbs that hang out in the bottom of a toaster. You do not what your GF bread hanging out in there.

In my house, I have a separate area in the kitchen that is kind of like “gluten-free corner.” I have my own toaster and keep all of my breads, snacks, etc in that area. My toaster is also red as a visual reminder. Some other items you want to be weary of sharing with non-gluten free foods include a deep fryer, bread machines, wooden utensils and tools (such as cutting board, rolling pin, etc), and even microwaves. You don’t need to have completely separate microwaves but you need to be mindful of how you are using it with both gluten-free and gluten-containing foods.

For more advice on how to set up your kitchen, check out this post about 10 ways you may be getting glutened by your kitchen.

2- Prepare and/or serve gluten-free foods first.

Obviously others are not worried about being contaminated with gluten-free foods (except when it comes to eating a gluten-free biscuit – I think my husband almost died from trying to choke down a dry-as-the-sahara biscuit I attempted to make in my early years of GF baking) but some issues can rise when the kitchen gets busy and both gluten-free and gluten-full foods are served on the same countertop. Some people with Celiac do not have a strong reaction to cross contamination but for others, it can take the smallest amount of gluten to induce a major reaction which depending on the situation can be slightly embarrassing.

The reason I mention serving gluten-free foods first  (or allowing the person with Celiac to fix their plate first) is that naturally as a family is gathered around the table, serving spoons don’t always stay where they should or people can grab something with their hands and without noticing, contamination can become a problem. This is especially true if you have a larger family meal, a dinner party, or a pot luck type situation so instead of having to worry about it throughout the meal, allow the person with celiac to go first or just automatically dish out a certain amount of foods to be put aside away from the rest of the dinner to keep your gluten-free foods safe. No one wants to spend time worrying when they could be fully enjoying the fun and their guests.

3- Educate family and friends.

It may seem uncomfortable but it helps so much in the long run to educate family or close friends that you enjoy sharing meals with frequently. You don’t need to give them the full rundown of Celiac and its affects on the body but just letting them know what kinds of foods contain gluten – BROW – barley, rye, oats, and wheat. My parents do SO much baking at Christmas (I cannot even begin to guess how many dozens of cookies get cranked out of that kitchen every December) so my mom really wanted to learn about how she can adapt some of my Christmas faves to be gluten-free. My dad is so amazing and he always goes out of his way to research my illnesses. If we are planning a trip, he always finds the gluten-free dining options ahead of time which always makes me feel special. Obviously I am adult and always do the same thing but it makes me feel special that he pays attention the way that he does. I have amazing parents, people.

As far as friends go, the easiest thing would be to host the meal so you know everything that is going on in the kitchen or to prepare yourself a gluten-free meal and bring it with you so no one else has to worry about it. I like to do this as it is easier all the way around but I do have friends that want to know more about my diet needs so they can prepare gluten-free meals when they wish to. Even if you are the one that does all the cooking, it is just a good idea to give your family and friends the cliff notes version of celiac just to be sure.

4- Adopt the phrase “If I don’t know, it don’t go.”

As I mentioned in my post on things to know when you are newly diagnosed with celiac, reading labels is of great importance as is knowing restaurant menus. Eating at pot lucks and buffets are pretty much impossible if you have Celiac because you either don’t know fully what is gluten-free and what isn’t but the chances of cross contamination are huge. Just to be cautious and as someone who has a violent reaction to the slightest bit of gluten, if I don’t know 100% that the food is gluten-free, then I don’t eat it. Something that can be noticed on some food labels is the phrase “made on the same equipment with products containing wheat/nuts/etc.” This is really important to take notice of. The food itself may be gluten-free but it is processed on the same equipment as gluten-filled products which heightens the risk of cross-contamination. For examples, Rice Krispies themselves are gluten-free but because they are processed on the same machines as other cereals, they become contaminated. When you are reading labels, make sure to read the whole label versus just the ingredients so that you know all the facts.

5- Keep Gluten Cutter (or a similar product) on hand in case you get contaminated.

Gluten Cutter does not allow you to indulge in gluten-filled foods but it helps your body process the gluten and remove it from your system quicker. It doesn’t work the came way Lactaid does for those that are lactose intolerant.  You will still feed all the funky side effects but it will help your body process it out of your system quicker which in turn should help those side effects fade quicker as well. Supposedly they are working on a type of medication for those with Celiac that allows you to eat gluten-filled foods. We’ll have to wait and see what happens there!

Tips for living with celiac disease

In the meantime, as persons with Celiac, we just need to be diligent to avoid gluten-filled foods and situations where cross contamination could be an issue. Hopefully these posts have been helpful! Coming up with be a post with 3 of my favorite super-easy and super-yummy gluten-free recipes!

What tips for living with celiac disease would you give someone about cross-contamination and maintaining a gluten-free lifestyle?

chronic illness

5 Insider Tips To Know When Newly Diagnosed With Celiac Disease

 

So you’ve had the EGD, completed the blood work, and your results are in. Your gastroenterologist tells you that you have Celiac disease.

You may fall into one of three categories:

  1. You know all about celiac disease as you have other family members that have the disease as well.
  2. You know a little bit that includes some of the lingo and catch phrases as somehow being “gluten free” was trendy.
  3. You know absolutely nothing.

I fell into the third category. Like all of my other illnesses, I am the only one in my family know to have the disease. When we first suspected that there were gastrointestinal issues going on in addition to the endometriosis, I saw the local gastroenterologist first. At that particular office, when screening for Celiac, they perform the blood work first which tests for the presence of Tissue Transglutaminas Antiboties (or tT-IgA). The second step to confirm diagnosis is by taking a biopsy of the small intestines via an EGD. While 98% of individuals with Celiac disease will test positive for iT-IgA when eating a gluten-filled diet. However, there is a small chance of a false negative antibody test so the only way to truly confirm the diagnosis is by doing the biopsy.

Remember that small, roughly 2% chance I was talking about when it comes to a false negative? I am that 2%.  The bad part was that my first gastroenterologist did not do the follow through with the biopsy so he didn’t catch the Celiac disease and for 5 years, he just kept telling me to “eat more yogurt.” Finally fed up I got another opinion who did the biopsy first followed by the blood work and finally the light came on. I have Celiac disease. The benefit of being in the 98% means that your Celiac can be monitored via blood work but because I am in the miraculous 2%, I have to have an EGD in order to monitor the healing/progression of the disease. All I can say is that at least its only an EGD, not a colonoscopy. Not eating or drinking after midnight is infinitely better than having to survive a bowel prep.

Once the diagnosis was official, I said goodbye to my beloved creme filled Krispy Kreme donuts and Wendy’s Spicy Chicken sandwiches and set to work on figuring out this whole gluten-free lifestyle thing. While there is a part of me that gets annoyed with the gluten-free “trend” as I think it can take away from the real damage that can be done to the body by Celiac disease, the one good thing is that it has helped gluten-free foods, specifically gluten-free convenience foods, more readily available. They may cost an arm and a leg but at least there are options. I’m still waiting on the creme filled donuts and spicy chicken sandwiches.

However, I have picked up 5 insider insider tips for newly diagnosed with Celiac disease.

1) Get thyself to a dietician pronto.

If you can find one that specializes in Celiac disease and/or gluten-free diets, even better. I am so, so glad that my gastroenterologist knew someone to refer me to once I was diagnosed. Not only was she a registered dietician, she also had a daughter with Celiac disease which added great perspective. She could lay out how to balance my nutritional needs and give specific product recommendations. There was some trial-and-error already built in as she could tell me what products to absolutely avoid so I didn’t spend $6 on a box of crackers that tasted like drywall. She could also tell me what gluten-free cheesecake was absolutely worth every penny when I came across it. All the perks of taste-testing without having to do the taste-testing.

2) Create a gluten-free kitchen.

Your whole kitchen doesn’t have to be gluten-free but you at least need a little corner of it to be designated gluten-free. This specific post is just going to cover the kitchen in a broad sense and not include all the details of keeping your kitchen gluten-free while baking, preparing full meals, etc. That post will go up next week!

This is another area where my dietician was able to help me get set up because were so many things I never thought of. For example, you need to have separate toasters for gluten-free and non gluten-free bread. Some people become very sensitive to getting into gluten once fully gluten-free and it doesn’t take much for cross contamination. How often do you dump your toaster upside down to get out all the bread crumbs? If you don’t have separate toasters, all of that gluten would be transferred to you. Another appliance to be wary of in the kitchen would be a countertop deep fryer. You cannot deep fry both gluten-full and gluten-free products in the same fryer. That oil obviously holds on to everything. This is why you can eat french fries out at certain restaurants but not others (for example, Chick Fil A cooks their delicious waffle fries in designated friers so they are not sharing oil with breaded chicken that obviously is laden with gluten. God bless you Chick Fil A!

Another important area of the kitchen to pay attention to that is so easily overlooked relates to condiments or any type of products that you dish out with a knife or spoon. For example, when you open a fresh jar of peanut butter, the moment you take out a spoonful to spread on your regular (non-GF) bread and stick your spoon back into the jar for more, that jar is now contaminated with gluten. The same goes for butter, jelly, mustard, mayo, etc.

There are three easy ways to handle this:

  1. Establish a one knife/spoon rule in the house: You can only stick the utensil in the jar once. If you need more, you need to use a clean one.
  2. Have completely separate jars/tubs of products that are marked gluten-free.For example, you buy a two pack of the small tubs of butter and immediately label one with a sharpie or sticker to be gluten-free. For added precaution, you put the items marked to be gluten-free go in the door of the fridge while the others go on the shelf. This may cut down on the chances of cross contamination but it means you have to buy duplicates of everything.
  3. Lastly is a sort of combination of the two – use squeeze bottle products whenever possible. It prevents cross contamination without having to buy duplicates of everything. While not everything can be purchased this way, many things can and it is a great way to not have to constantly remind yourself every time you reach for something, “Grab the gluten-free. Grab the gluten-free. Grab the gluten-free.”

As I said before, I will go into the specific details of maintaining a gluten-free kitchen while baking next week but these are some more general tips for the kitchen that we may not think of.

3) Spend time reading labels at the supermarket.

The first few times you go shopping gluten-free, build in some extra time to go at a slower pace and read labels. Some supermarkets deserve a big high-five for adding gluten-free markers on the shelves or grouping all gluten-free products together but that isn’t always the case. Also, some items don’t say gluten-free specifically on the box/label but they actually are gluten-free and you could be missing out on something delicious.

Obviously when reading labels, the first thing to look for is the bold print. The top eight most common food allergens are required to be shown in bold print when present. These allergens include milk, eggs, peanuts, tree nuts (such as walnuts or almonds), fish (such as cod or bass), shellfish (such as shrimp or crab), soy, and wheat. Seeing wheat in bold sends up an easy red flag that the item is not gluten-free.

Another crucial item to look for on the ingredients label is the phrase modified food starch. The problem with this phrase is that its too generic. It is very possible that an item labeled as containing modified food starch could be gluten-free and perfectly safe to eat but there is no way to know for certain with just that amount of information. Modified food starch could refer to corn starch or it could refer to wheat starch. You could give it a shot and pray it doesn’t make your gut explode or you could adopt my motto, “If I don’t know, it don’t go.” Brands are finally starting to pay more attention with the rise of both the occurrence and awareness of Celiac disease and are starting to specifically say modified corn starch, etc.

Last thing you want to look for on a label is a little warning that may say “manufactured in a factory that also processes wheat.” That kind of warning indicates that while that particular product does not contain gluten, it is process on the same equipment or in the same area as products that do. It may pass over the same conveyor belts or get packaged in the same area. While there is a small chance of cross contamination, it is important to recognize that there is still a chance. If you are particularly sensitive, that may be enough for you to stay away. The Mayo Clinic provides a great resource on understanding reading food labels if you would like more information.

4) Plan ahead when eating out.

Thank goodness for the power of the interwebs in helping to make eating gluten-free easier when dining out. A lot of big name restaurants provide a gluten-free or allergen-friendly menu on their website so you can be sure that they do in fact serve gluten-free options before sitting down to order. Two of my favorite places to eat out gluten-free is Outback Steakhouse and Longhorn Steakhouse as they both make sure that great allergen information if available for their guests. Some restaurants are taking it one step further and making notations on the full menu on which items are gluten-free or can be altered to make gluten-free.In my experience, restaurants that take the time to add that information in their menus also take the time to make sure that their servers know what it means (my favorites are Fatz and Red Robins). However, if you are talking to your server about your gluten-free meal and it feels like they may not be understanding it (either what gluten-free means or the importance it being gluten-free), ask to speak to the manager. This is one area where you don’t want wires to get crossed. Nothing will break up a dinner faster than getting contaminated and having to sprint to the potty.

5) Check your medicine cabinets and vanities.

When I learned about how many off the wall things that gluten can be found in when I was first diagnosed, I was floored! Common items that can contain hidden gluten are supplements, vitamins, and medications. Again I think more brands are moving towards eliminating gluten but they are not all there yet so definitely double check. A few years ago, I started taking Vitamin B to help with my energy and I remember being so frustrated because I was feeling so crummy. I knew I was taking it exactly as directed. Then on day as I looked further down on the label under the directions, I got my answers. Whoops.

There is a lot of back and forth on whether or not beauty products that contain gluten can have a detrimental effect on individuals with Celiac disease. Some say the amount of gluten would be so, so low that it wouldn’t have any affect plus the fact that gluten cannot be absorbed through the skin. Others say why take the chance. If you know the item has gluten-containing ingredients, just avoid it. Or you can fall somewhere in the middle (which is where I happen to hang out at). Obviously when you have Celiac disease, you worry about ingesting gluten. If it is a products that has the possibility of being ingested such as dental products, lip products, etc, I go the extra step to know for certain it is gluten-free. One other product that I always look to be sure that it is gluten-free makes me look/sound a little crazy but I always check my hair spray. A lot of hair sprays use wheat proteins to help increase the hold and I know it makes me totally nuts but I know I’m not the only one who has had a major coughing fit after choking on some hairspray. Hello, my name is Jamee and I have OCD – Obsessive Celiac Disorder . . . 

 

Tips for living with celiac disease

There are 5 of my best insider tips for those that are newly diagnosed with Celiac disease, have a friend or loved one with Celiac disease, or are considering going gluten-free for other health reasons! What are some of your favorite or most important tips for living Celiac disease or any major illness that requires a major lifestyle change?

chronic illness

Return To Me: Reclaiming My Life

Reclaiming My Life

I created a post in October stating my excited for my return to blogging. I was so ready to get some order and routine back in my life. I had a plan for reclaiming my life but somewhere along the way, things went wrong.

As you may know, I suffer with chronic migraines on top of everything else. I had a neurologist that I loved but he decided to move elsewhere. I ended up seeing a temp neurologist for my regular 3 month checkup while they searched for a full time replacement. Previously we were using optic nerve blocks and trigger point injections in attempts to prevent migraines and/or knock down the frequency. Since I was still having migraines rather frequently, the temp neuro thought that I would be a perfect candidate for Botox so he got the ball rolling.

It took almost 6 months to get the Botox approved with my insurance and to schedule with a new neurologist. My appointment was finally set for November which was consequently within two weeks after my post about making a return to blogging. When my new neurologist walked into the exam room, I about fell off the table for two reasons. Reason #1: My new neurologist is actually my old neurologist whose practice I quit years ago because I felt like he never listened. Reason #2: The amount of needles I saw on the tray he was carrying was terrifying. My round of Botox included 31 injections. THIRTY-ONE. I wanted to pass out.

I got through the first 20-25 shots relatively well but after that I began to feel very sick and weak. My neurologist said that it was not uncommon and that I was actually one tough cookie considering I was able to stay strong as long as I did. The process was far from a walk in the park. I think that migraines and injections are going to be a forms of torture in one of the circles of hell (check out Dante’s Inferno). After what felt like eternity, the appointment came to a close and I was on my way home.

Shortly after that all hell broke loose.

The pain was excruciating and never ending. I have never experienced such intense migraine pain in all my life and it also felt like the migraine extended down my spinal cord. That same throbbing and pressure extended all the way down. It hurt to move. It hurt to lay down. Everything that I have used in the past to ease my migraines was no longer effective. There was no escaping the pain. I couldn’t sleep and there were moments where keeping myself breathing took all the energy I had.

I don’t know what the Botox set off but it was definitely the source as a lot of the side effects I had never encountered until I got the Botox. The neurologist didn’t want to acknowledge it initially but after we tried altering my other preventative medications and having an infusion, he figured it out. He said that it was likely that the Botox was too much for the muscles in the back of my head and neck which then caused the spinal migraines. He ordered a MRI for next week and prescribed me an anti-anxiety medication to see if it would help relax those muscles to decrease the pain which in turn would help me sleep and feel like an actual functioning individual.

For the first time in a long time, I felt like I was finally able to be the wife and mother I had been longing for. I had hope and dreams for what was become. My creativity and inspiration had returned and I made lists of things I wanted to achieve both in blogging and in my personal life. I finally felt like I was reclaiming my life again. I was finally going to be able to return to being me. I was finally going to be able to look into the mirror and recognize the person staring back at me. It felt so good.

Then just minutes ago as I was writing this post, I got call from my neurologist and he wants to stop the medication. Even though I was able to make a long list of all the positive changes it has allowed me to make, he thought it wasn’t worth risking the side effects. When the nurse called to deliver the news I cried on the phone with her and asked that she talk to him again and plead my case. I have worked hard with my pain specialist to wean off 80% of my pain medications and have stopped two others that were not nearly as effective for my fibromyalgia pain as the new medication.

I had all intentions for this post to have a happy ever after ending with balloons and confetti. I felt like I was finally reclaiming my life and couldn’t wait to tell you everything I had planned. I still have a lot of plans that I will definitely be sharing with but first, in order to continue reclaiming my life, my first order of business is to pick up my toolbox and go to work as my own advocate before that reflection in the mirror starts to fade.

I refuse to give up.

 

AWESOME UPDATELater in the afternoon after I published this post, I was able to have a conversation with my doctor – a real, honest, raw conversation – and he is extending my prescription at least until we get my MRI results back (he doesn’t think there is a tumor but is concerned about possible fluid buildup causing pressure). Once we have the results, we will sit down together and go over everything in detail and come up with a plan together on how to proceed! A major victory for the spoonie team! This is proof of important it is to become your own advocate. Make sure your voice is heard. Whatever it takes. Don’t worry about being annoying or inpatient. The nurse kept trying to end the conversation but I knew I had to finish and say what I needed to say. I wanted to be sure that everything was out on the table and in this case, it worked. Advocacy for the win! Now that hope is restored and I’m feeling like a chronic badass, I can’t wait to share what is in store for the future tomorrow!

bloggingchronic illness

Awesome Things Are On The Way

New year, new start.

I am well aware that it isn’t the start of a new calendar year but last week I had the “pleasure” of turning 35. I am officially in my mid-30s. YIKES. I had to knock off about two inches of dust from the blog and I’m sorry for being AWOL. The flares got worse and felt like I was in a hole and now matter how hard I tried, I kept falling farther and farther down the hole. It became easier to overlook the computer the to open the lid. It because easier to pretend like I had nothing to say because honestly I had nothing to say. To anyone. I had completely shut myself off from everyone. My family. My friends. Everyone. Its like for a period of time I seized to exist except for breathing, throwing up, and being in pain. I had become encased in a shell because of battling life with chronic illness. That was my whole existence. And to sum it up:

IT SUCKS.

And you know what, I am done. D-O-N-E.

They say the first step to making a change is to admit that you have a problem. I have a problem. I have been barely existing in this sleep deprived blank state for far too long. I have watched too many things pass me by. I went to Disney in September and it was the most alive that I have felt in I don’t know how long (posts will be coming soon sharing all of those glorious details). I planned to get right on it as soon as I got back from Disney but this was the course of action (and I only wish I was exaggerating).

First, I got the typical post-vacation flare.

Then as soon as that lifted, I fell down our back stairs. My face broke my fall. It was bad. One minute I was at the top of the stairs putting my dog on her lead and the next thing I know I am face first in the first crying “ow, ow, ow” with blood streaming down my face, black eyes, scraped shoulder, knees, and elbows. It was not a pretty site.

As soon as that pain lifted, I got hit with this nasty respiratory infection that has not gone away despite antibiotics which require another call to the doctor tomorrow but I am calling it.

Enough is enough.

I am ready to make some life changes with my chronic illness. I am reclaiming my life. Yes, I am sick. It is a part of who I am but it does not have to be ALL that I am. This is my time. I have sat in the dark too long.

I deserve more. More importantly, my family deserves more.

I am stoked. I’ve got my planner ready. I’ve got lists, supplies, and even ordered some camera equipment to hopefully add some videos in here and there.

Change is coming people.

I hope you are as excited as I am. I am crying as I type this because I am so excited and ready. It is time to reclaim my life with chronic illness and it is going to be awesome!

More details to come!

Stock photo by Turquoise & Palm