bloggingchronic style

Welcome Back To A New Kind of Normal!

A New Kind of Normal Relaunch

Words cannot describe how excited I am to say, “Welcome back to A New Kind of Normal!!!”

It has been way, way too long since I have had a chance to really sit down and write and – excuse my French – damn it feels good! 2017 has a hell of a year all the way around and I am so glad that it is OV-ER and a new year is upon us! I have so, so much to tell you and so, so many things that I want to see accomplished this year but I am learning to embrace moderation to avoid burnout.

I am sorry that this post is so short but so far I have been working on this blog for 8 hours straight! You will be seeing a lot of sawdust as the site is still under construction! I know you saw the Maintenance sign up but what can I say, I am a girl that changes her mind and I just have so many ideas that I want to put into action and I just didn’t want to wait any longer!

Reconnecting

A New Kind of Normal has always been focused on changing the lives of those with chronic illness and encouraging the to choose hope and joy despite chronic illness and to live boldly in spite of it. This will continue to be the driving force behind it but this year the focus will narrow in on reconnecting to our bodies in a positive way and reclaiming our confidence. When you have chronic illness, it can be difficult to maintain a positive view of your body when you feel like it has betrayed you. If I had a dollar for every time I ever said “My body hates me,” I would be living on a tropical island. I hate feeling this way and I know that I am not alone that is why I am hoping to change my way of thinking. Scratch that – that is what I am hoping to change our way of thinking.

Reclaiming

Along with reconnecting, let’s talk about the reclaiming. My family makes statements all the time about my love of makeup as an attempt to feel beautiful when it couldn’t be farther from the truth. I don’t need makeup to be beautiful. God stitched me together piece by piece and He called me beautiful so I can feel beautiful in a glamorous wedding gown or a hospital gown or in full glam makeup with false eyelashes, the whole nine yards or not a stitch of makeup. Now that we have laid that to rest, let’s get to the real reason why I love makeup so much.

The second half of this goal focuses on reclaiming our confidence. Makeup doesn’t make me feel beautiful, it makes me feel confident. It gives me an avenue through which I can express my creativity. I can feel feminine. I can feel edgy. I can feel both. I want for each of one of us to find an avenue through which we can all reclaim this confidence. I want us to feel good about our bodies and feel spunky, sassy, sexy, fierce, creative, bold, audacious, unique, and on and on. I want that for all of us. Each and every one of us deserve to feel like the most rockin’ chick on the planet.

This is what I want for A New Kind of Normal. This new mission statements reads:

to create a community of rebel hearts living boldly to smash through the limitations that chronic illness has tried to build around them with a fierce beauty and confidence all their own.

The five things that I want a reader to feel while she is reading my blog is connected, empowered, inspired, creative, and confident.

Reading these five words get me so excited that my husband is honestly giving me weird looks.

This is just a small taste of what is to come! I cannot wait to finish telling out everything that I have planned for A New Kind of Normal but that will have to wait until tomorrow!

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

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!