chronic illness

Reality Accepted: New Dreams On The Horizon

Abdominal Adhesive Disease

The past few years of my life have been challenging. It is almost as if I never recovered from my bowel obstruction surgery. I was re-hospitalized several times during the course of recovery. I attempted to return to work but ultimately had to quit and officially file disability. Just as I was preparing for my final disability hearing, I had to have surgery #7 in order to remove my gallbladder that not only had decided to quit working completely but managed to create over 200 stones in the process.

That surgery itself was not a big deal. I actually remember waking up in recovery feeling relieved versus the usual “did anyone get the name of that train that just ran me over” feeling and begging to be put back under. I had been so disgustingly nauseous for so long that once they removed my kaput gallbladder it was almost as if I could breathe a sigh of relief despite having been cut open.

But it didn’t end there.

My surgery didn’t quite happen as scheduled. While waiting for my surgery date, I was in so much pain and so sick that I went to the ER and they decided to go ahead with the surgery that night. I went into the OR around midnight. By 9am, my surgeon was in my room ready to send me home but he wanted to go over his findings first. I vaguely remember what he said about my gallbladder other than it was being sent to pathology but what caught my attention was his description of my lower abdomen. He said my lower abdomen/pelvic region was full of adhesions and it was only a matter of time before I obstructed again.

In that moment, something changed.

The events surrounding my obstruction were traumatic and while I knew that there was a high chance it could happen again, the thought that another obstruction was imminent set off a whole new level of anxiety and fear. It was as if he handed me a grenade, pulled the pin, and left me standing there afraid to breathe for the fear of setting off a chain of events.

I have spent the last 2 1/2 years holding that grenade afraid to move.

Any time I have tried to ask that surgeon or another general surgeon why they didn’t remove the adhesions while I was already in surgery for my gallbladder, I never got a direct answer. One would say that if they weren’t in the way, they wouldn’t mess with them. Another surgeon stated that while it was obvious that the adhesions were causing pain (and affecting certain functions), I was considered too high risk to go in preemptively so they would wait for an emergency which only made my anxiety that much worse. The more anxious I got, the more questions I asked. The more questions I asked, the more vague the responses.

I couldn’t get a clear answer and all it made me do was hold onto that grenade even tighter.

I couldn’t move forward with my life until I had an answer.

Two weeks ago I had enough. I set up an appointment with Dr H, my endo doctor/surgeon that I have been seeing for over a decade. I put it all out on the table. All of the anxiety. All of the questions. All of the anger. It was all out.

She did the same. Instead of dancing around the truth (as some of the previous surgeons had), she told the truth, no matter how scary. The truth of the matter is that they don’t want to mess with my adhesions because they don’t want to kill me. The type and placement of my adhesions would make trying to remove or separate them an extremely delicate process. She described abdominal adhesive disease and the complexity involved in treating it and she said that unless it was absolutely necessary, the risk would be too great to go in otherwise.

I could finally put the grenade down.

Is knowing the details of just how dangerous of a situation I could be in because of my history and my adhesions scary? Heck yes. Absolutely. But knowing the truth allows me to process and accept it versus constantly fearing the unknown. I am a tangible learner. I need something in my hands to understand it and being able to recognize abdominal adhesive disease, even with all its dangers, allows me to take it in, process it, and find a way to move forward despite it.

Knowing the danger is better than knowing nothing.

For the first time in years, I feel like I can move forward. I didn’t realize just how stuck I had become until I was able to move.

I can breathe.

I am finally able to sleep which means I am finally able to dream.

 

Photo by Denys Nevozhai on Unsplash
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.

 

Do you have any goals for 2018?

Images: IvoryMix