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!


Here is to Living Boldly for another 10 years!

chronic illness

Stalemate: When Life With Chronic Illness Gets Put On Hold

Stalemate: When Life With Chronic Illness Gets Put On Hold

There comes a point in your life with chronic illness where you feel like you are going no where. There are opinions. LOTS of opinions but no where to go. No way to move forward. I’m not a huge chess player but I can’t help but think of this point in my life as a stalemate.

Definion of Stalemate (per Merriam Webster):

: a contest, dispute, competition, etc., in which neither side can gain an advantage or win

: a situation in chess in which a player cannot successfully move any of the pieces and neither player can win

This is honestly where I feel like I am in my life. I have a team of doctors (neurologist, rheumatologist, gynecologist, gastroenterologist, pain management specialist, and general surgeon) and at this point it feels like they are all just pointing fingers at who should be in charge of what. Honestly, it feels like they are just pointing fingers at whose fault it is. The one thing they all agree on is that I am in need of surgery but I am considered too high risk to go in preemptively so they just want to wait until something goes wrong (another total bowel obstruction is the most likely).

There is nothing worse than waiting.

I am currently waiting for our Disney vacation (123 days to go!) which is gut wrenching because I love Disney so much but at least I know at the end of 123 days, I will be on a plane headed south to visit The Mouse and have a week full of fun and family.

When you are waiting for something to go wrong, there is nothing exciting about that. My first total bowel obstruction experience was scary enough without knowing that it was coming and of course, the life changing experience I had in February, I never want to go through again. So right now, I have no idea what to expect.

We are at a stalemate. I feel like there is no win in this situation.

We have known for sometime that adhesions have been affecting my bowel but recently, I have been having a lot of issues with my bladder. The pain can take my breath away. I did see my PCP and I do not have a bladder infection or UTI so those are two causes crossed off this list. Two of concerns at the top of my list are bladder prolapse (which is common post-hysterectomy and I have a family history) or the adhesions have spread and now my bladder is involved. I’m not sure which one would be better.

I see my endo doctor June 8th and part of me wants to get on my knees and beg that she does surgery. Risks be darned but I need my life back. I know I will always have a life with chronic illness but there needs to also be a quality of life.



Am I absolutely crazy to beg for a surgery? I know the risks. There are a lot of them. I am not going to play that down. But at what point do the possible benefits from surgery outweigh the risks?

The last general surgery I saw said that the chances of anyone ever being able to do anything laparoscopically are slime because of scar tissue. She said that by just by feeling my scar from my vertical obstruction incision (which honestly feels like a rope) that any adhesions would likely be dense. When I have my gallbladder removed last summer, they could not even use my belly button for the laparoscope because it has been used too many times. My poor belly button.

Maybe we’ll get lucky. Miracles happen right?

All I know is that something has to give. Something has to change. We know there is a problem and I’m tired of feeling like a ticking time bomb. I’m tired of constantly being at a stalemate. Its time to make a move.

Have you ever felt like you were at a stalemate? Who made the first move?

chronic illness

Putting My Latest Hospital Stay In The Past & Looking Towards The Future: Reclaiming My Hope With Chronic Illness

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Another post, another trip to the hospital.

That’s right folks. Another trip to the hospital. And this one lasted almost a week.

I had my post-op checkup on August 4th and it went fine. Biopsies revealed what we already knew so there were no surprises there. He was surprised that my pain was still at the level it was and that I was still unable to eat. He said we would keep a close eye on it and I went on my way.

Two days later I felt like I had fallen into the seventh circle of hell. I was vomiting or dry heaving non-stop so I called my surgeon’s office. He wasn’t in yet but the nurse said that I could either go straight to the ED or she could get me an appointment that afternoon. Considering I absolutely hate everything about the ED, I opted to stick it out for the appointment. As soon as I got to his office, I went downhill and I went downhill FAST. By the time he got in the room, I was shaking from the pain and vomiting. Unfortunately Abby was with us and she had to witness it which shattered my heart. She was so scared and just held my hand. Of course he sent me straight to the ED, the place I had been trying to avoid in the first place. He didn’t want to go ahead and admit as I could have just been severely dehydrated and needed meds and fluids.

The ER is less than a half mile away so we got there quickly but of all days, the place was code red (meaning it was completely overflowing and they were on the phone calling in more staff when I rolled in).  Thankfully they saw how bad of shape I was in and I got slid through a little faster. A family friend came to pick up Abby and my mom had already planned to come down for the weekend so she just headed straight to the hospital.

Two nurses came in the room to start the IV and I warned them that I had really shoddy veins. They laughed it off and said not to worry, they were good. I hate that response because I know it means they aren’t taking me seriously and are going to half kill me before being able to sink the IV (why won’t they get one of those new devices that helps locate veins?!). I had one on each arm digging around. They would either blow the vein or not be able to stick it. I don’t think I have ever been so close to passing out. I felt my eyes starting to roll back in my head. Then I heard another nurse come in the room. She told the others to back off and she nailed it first try. She had been an army nurse for years and knew where to get people when you need to move quickly. She is most definitely a hero.

They started the fluids and meds and then the most God awful pain I had ever experienced in my life hit (I must have descended down to the 9th circle at that point). Had I know known better, I would have thought I was having a heart attack. I couldn’t breathe it was so intense. They gave me a shot in the shoulder for quick relief and while I usually hate the site of a nurse with a massive needle, at that point I didn’t care. It finally got me stable enough to go to CT. The scan didn’t show any stones or anything that had been left behind from the gallbladder surgery but their was some fluid and inflammation so they were going to admit me for the night for observation and to keep the fluids going.

That one night turned to five. We couldn’t get my pain under control nor could I keep anything down. Even ice chips would make me throw up. Over the course of my stay, they repeated the HIDA scan and an EGD. When my labs came in, it showed that my pancreas enzymes were five times what they should have been so the official diagnosis was pancreatitis. They dropped back down rather quickly but it still didn’t provide answers for everything that was going on. Once I was able to keep liquids down, I was discharged on the 11th with order to see my GI in Charlotte as soon as possible. I was able to see him last Thursday and he is sending me to a pain specialist he works with for a second option on treatment options beside pain medications. Praise Jesus! I have wanted to get away from my current specialist for quite some time but there is a lot that goes into changing clinics without looking like a drug seeker so with him making the referral and notating that we are looking for non-narcotic options, it will cut through a lot of the red tape and keep me safe.

I’m still not able to eat normally (Ensure and milkshakes are my current BFFs) but I am definitely feeling hopeful that change is just around the bend with the referral and the news that I finally having a hearing! My court date for my disability has FINALLY been set so we are in the home stretch of getting the whole ordeal put to rest! I am definitely feeling more energized and ready to take on the world. I read this post by my endosister, Kasanndra, wrote called “Why You Should Be Brave, If Nothing Else” and it was definitely something I needed to read today and maybe you do too. I am ready to put the past behind me, look forward to the future, and reclaim my hope with chronic illness.

I am working at getting back in the swing of things and get back on a regular posting schedule. I’ve also been doing some behind the scenes work to keep things running smoothly and to really put more of myself into the blog. If you have any ideas on what you would like to see happen on the blog or within the community, most definitely leave a comment or shoot me an email! I will be chatting with you again soon!