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!

chronic illness

4 Things You Need In Your Advocacy Toolbox

When you get diagnosed with a chronic illness, the first thing you need to do is learn how to become your own best advocate. Actually, first, you need to allow yourself to take it all in. Get upset. Or angry. Cry. Throw something. Eat a banana split (or two).  Then, when you are ready, pull yourself together and decide that you need to be your own best advocate.

These are the things you need in your advocacy toolbox:

1. Research.

I’m not taking about straight up Dr. Google or even Dr. WebMD because they will have you convinced that you are dying of rare condition that will have you bleeding out of your eyeballs any second. Don’t get me wrong, the internet is a great place for research but be sure to check your sources. Read books. Keep up to date on the latest research. You can set up Google alerts to be notified if posts or articles containing your chosen keywords (such as endometriosis research or gastroparesis treatments) are published. Blow your doctors away. By arming yourself with this knowledge, you are able to take a more active role in deciding your treatment plan because you know what the options are. I had to learn the hard way. One of the biggest regrets of my life was choosing to take Lupron. I hadn’t been diagnosed with endometriosis long and hadn’t learned better yet and by taking that medication, my body has been damaged for life. Damage I could have avoided had I researched my options beforehand.

2. Build a dream team of doctors.

When I started getting sick and my PCP told me that she suspected I had a “female problem,” I got extremely lucky that a new ob/gyn had just moved to town and she was assigned my case. The average length of time it takes a woman to be diagnosed with endometriosis is 7 years. From the time that my pain became debilitating to the time she had my diagnosed was 3 months. I saw my PCP in July, had my first appointment with her in August which started all the testing, and I had surgery to confirm endometriosis in September. I got lucky. I got lucky not only because I was able to be diagnosed quick but I got lucky because she was an absolutely amazing doctor. I’ve been with her now almost 13 years and everyone else nows how amazing she is and you wait an eternity for an appointment. But she’s worth it.

I wasn’t always this lucky. I’ve had to make a few chances to the line up to create my dream time. The first rheumatologist I saw didn’t believe in fibromyalgia but diagnosed me anyways then drugged me to the point I could hardly remember my own name. The first neurologist I saw seemed to sleep through most of my appointments as he always asked questions on his way out that we had spend the previous 20 minutes discussing. The first gastroenterologist kept telling me to eat more yogurt even though I was suffering with undiagnosed Celiac disease.

If you don’t feel like you’re being heard or treatment progress isn’t being made, there is no shame in asking for another opinion. Heck, demand it. The two most important things for me personally that I want in a doctor on my dream team is 1) I feel that am truly heard and 2) I am an active participant in deciding my treatment plan. Bedside manner is important but not the most important like I thought in the beginning. Dr H (my endo dr) is the warmest, most compassionate doctor on the planet and she has held my hand and cried tears of pain with me over loss and surgeries and cried tears of joy with me over our adoption news. Dr P (my rheumatologist) is a gentle soul. Not overly personal but makes me feel like a person, not just a patient or file and readily makes me an active participant in deciding treatment. Dr B (my pain specialist) has the personality of a wet mop and honestly if he smiles in an appointment I have to wonder if he got lucky that morning but never once has he made me feel crazy or like a drug seeker. He has always validated my pain. I’ve got other doctors but this just shows that there isn’t a cookie cutter mold of what your dream team needs to look like. We would all love to have a McDreamy or McSteamy on our bench but what is important is that you feel like they are on your bench – your team – and take your case seriously.

Chronic Ilness Advocacy

3. Don’t be afraid to speak up.

If you are in the emergency room and you don’t feel as though you are being heard, speak up. Ask to see someone else if you have to. Last year I went to the ER with an early small bowel obstruction. One of the hospitalists came at me with an NG tube. I explained my previous experience with the tube and that anatomically something prevented them from being able to insert the tube properly. The tube would just curl up in my sinus cavity versus descending downward. I was talking but I knew she wasn’t hearing me. She kept saying, “I’ll give you something to calm you down but we’re not skipping the NG tube because you are scared.” Finally, I just said stop and asked to see another doctor. When the other hospitalist came in, I explained the situation and she said no NG tube. Because there had been difficultly before, she wasn’t going to go in blindly and risk perforating something. If 24 hours of NPO didn’t clear the obstruction and an NG tube was necessary, she would consult a surgeon. The first hospitalist huffed out of the room NG tube in hand. The second just smiled at me and patted me on the arm as she walked out.

If you are in an appointment and have questions but the doctor seems rushed, speak up. Make them take time for your questions. It is their job. If they are pushing a certain treatment but you have concerns or reservations, speak up. If you are having a procedure done and are curious about what kind of equipment is used, speak up. If you had an amazing nurse during your hospital stay, speak up. Speak up about the good things and the bad things.

4. Have someone on board who can advocate on your behalf when you cannot advocate for yourself.

As important as it is for you to be a part of your treatment plans and on top of your research game with your illnesses, it is important that you have someone on your team that can call the shots on your behalf. They don’t need to be an expert in the field but they need to know about all your illnesses, your past history, and the medications you are taking. It would also be beneficial if they could go to an appointment or two so they can meet your doctors and get a better understanding of everything that is going on and get some of their questions answered. Also, it is also often very helpful for doctors to get an update on how a patient is doing from someone other than the patient. Sometimes we like to sugarcoat things or leave them out. Not that I would ever do that. Ever. It seems like an easy decision is you are married, have a SO, or are single and have a family member nearby that can help take on this role but if that is not the case, it may seem awkward to ask a friend to take on this type of role (I’m not talking life or death, power of attorney type stuff here) but it is extremely important.

My husband is an amazing advocate and so many times he has stood up and fought for my care when I could not fight on my own. I try to keep an updated list of medications in my phone but when the emergency happened in February, he just grabbed the bucket of medications from the bathroom shelf just trying to try to make sure the doctors had everything they needed. Unfortunately, this bucket contained not only my prescribed medications but basically medications for the whole family which confused the staff even more. This taught me a huge lesson on how I can do a better job of preparing my advocate to be able to do a better job of advocating in my place. These days our cell phones are like a second limb so try to keep an updated medication list, any allergies, a list of doctors you see regularly and their numbers, and a brief medical history (just the high points that emergency personnel may need such as surgeries, etc) and show your BAFF (best advocacy friend forever) where it is located in case of emergency.

 

There are my 4 items essential for any toolkit to be able to advocate for the best possible healthcare for yourself or for your loved one.

What you would add to the list?

 

Stock Images by Turquoise & Palm
faith

Thy Will Be Done: Walking by Faith With Chronic Illness

You can call it coincidence, good timing, divine intervention, or God’s will but there are moments in time where in the midst of chaos, rambling around, or just goofing off that the universe hands you exactly what you’ve needed to hear on a platter. I had one such moment this week. It was late and I was poking around on Spotify looking for new songs to add to my playlist and I came across a song called “Thy Will Be Done” by Hillary Scott and The Scott Family.

For one, I had no idea that Hillary Scott (most known for being a part of the country group Lady Antebellum) had a worship album and second, would have probably never found the album on my own.

By the time the song was over, I was in tears. I take that back. Not tears. Sobbing. It would not describe the prayer of my heart more if I had written it myself. Actually, it described it better than I could have ever written. It could be the perfect anthem for trying to standing strong in your faith with chronic illness. It just spills out of my heart.

I’m so confused
I know I heard you loud and clear
So, I followed through
Somehow I ended up here
I don’t wanna think
I may never understand
That my broken heart is a part of your plan
When I try to pray
All I’ve got is hurt and these four words

Thy will be done
Thy will be done
Thy will be done

I was a junior in college when I felt the call to ministry and I answered. However, when I answered this call, I thought it came with a plan. After graduating undergrad, I immediately started seminary where I studied Pastoral Care and Counseling. I absolutely loved it. My health was continuing to decline but as I was working in the hospital during my chaplaincy internship, I finally felt like my pain had a purpose. I was able to connect to patients in a way that I knew that many chaplains were not. My spirit felt so alive. I graduated seminary in 2010. In 2012, I had to quit working and started the disability process. I was finally approved in 2015 and now, here I am preparing to beg my doctor for surgery at my next appointment. How did I get here? How was this a part of the plan?

I know you’re good
But this don’t feel good right now
And I know you think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you’re God
And I am not

Lately, I have found it so very hard to stay positive hence why I had to take a little break recently. I love this verse because it is such a powerful reminder that God is so much bigger than my tiny mind can even begin to comprehend and the noise can be so distracting. It is in moments like these that I know that God is good and even when I cannot see what His plan is here in this very moment, I can trust in His character and because He is good, I can find peace and respite in that.

I know you see me
I know you hear me, Lord
Your plans are for me
Goodness you have in store
I know you hear me
I know you see me, Lord
Your plans are for me
Good news you have in store

I will be the first to admit that there have been moments where I’ve been singing this in my truck and almost had to pull over because I’ve been so moved by these lyrics. Yes, I am that weirdo on the side of the road singing at the top of her lungs with her hands raised in her truck but I can’t help it. Even in the deepest depths of my pain, I can find such comfort just knowing that God has a plan for me and that plan involves things that are good and full of hope. And hope is like the wind. You can’t see it but you can feel it.

Jeremiah 29:11 "For I Know The Plans I Have For You"

I am so glad I happened to be up browsing Spotify that night so I could find this song. It has truly changed my heart and has helped me regain some perspective on my current situation. Though it doesn’t feel good right now, God is good and He has good in store for me and it is from there that I can draw my strength. I have put together a playlist called Strength For The Journey that you can check out if you are on Spotify and hopefully these songs can offer you some strength and encouragement as well!

What is a song that has been keeping you going?

P.S. If you are on Spotify, leave me a link so I can follow you!

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.

I NEED A LIFE.

MY 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

Another Day, Another Surgery, & Another Adventure: Just Another Day In Life With Chronic Illness

ANOTHER DAY, ANOTHER SURGERY

It has been a hot minute since I have blogged last and I am so sorry about that!

During my last post, I shared a little about the health struggles I was currently experiencing. We had the go kart drama on vacation but thankfully there has been no long term effects of that bit of action!

Otherwise, for months, I have just been feeling miserable. Sounds kind of normal for life with chronic illness but this was a level of misery above and beyond anything I had ever experienced. The word misery sounds a little over dramatic but honestly it is the only word that could remotely describe the intensity of what I was feeling. I was staying incredibly nauseous and this wasn’t feeling queasy or a little sick to your stomach. This was hardcore nausea. It even surpassed what I felt after my obstruction. I could not keep anything down and that is if I could even force myself to eat in the first place. If it did stay down, I had horrible, horrible stomach pains. I was constantly feeling weak/faint and I was losing weight at a rapid pace. So of course, my first stop was seeing my gastroenterologist. My primary (and amazing) GI was on sabbatical so I saw the PA and she immediately scheduled me for an EGD with the fill-in doctor for both the current issues and to follow-up on the adenomas that were removed last year to be sure they had no returned.

The EGD did not provide any helpful information. The good news was that the adenomas had not returned so I was super happy about that but the bad news was that we were no closer to finding out why I was so sick. This is where things get crazy.

For the record, had my regular GI not been on sabbatical, things would have progressed much differently. The following drama would have totally been avoided.

Because I was still so sick, I kept pressing the GI office for answers and begin to question if maybe it was my gallbladder that was causing the problem. Dr Fill-in said no and that he thought it was a heart issue so I needed to call my primary care doctor. I found this to be completely out of left field but I set up an appointment with my primary care doctor because I knew this needed to be resolved.

In the meantime, I had a check up with my neurologist and he did the nerve blocks and trigger point injections for my migraines (which hurt like nobody’s business but do make a difference in the occurrence and intensity of my migraines). He was also concerned about the nausea and weight loss and didn’t understand why the Dr Fill-in wasn’t taking it more seriously but when I told him about my fainting episodes he did some tests and diagnosed me with orthostatic (postural) hypotension. Basically when I stand up from sitting or laying down my blood pressure can drop as many as 20 points which can result in fainting, dizziness, and feeling weak. Thankfully it can be easily managed. Gold star for solving one problem!

Now for the next.

I had my appointment with my primary care doctor and the first thing they did was an EKG and like we already knew, it came back perfectly normal. After doing an exam and going over some questions, he really thinks the source of my trouble is my gallbladder (even though Dr Fill-in dismissed it). He scheduled me for a HIDA scan to check my gallbladder function and within a week from that visit we had the results: my gallbladder had ZERO function. It wasn’t doing anything except taking up space. I wanted to call up Dr. Fill-in and put him on blast but I didn’t (although you can be sure when I have my appointment with my GI when he gets back from sabbatical he will hear it all).

I was originally scheduled for surgery tomorrow but last Monday, the pain and nausea was so bad that my husband took me to the ER and they decided to do the surgery that night. I had an absolutely amazing medical team from start to finish. God set up everything that night from the nurses to the surgeon on call. He knew what I needed to feel at ease and to be taken care of medically. The thought of surgery doesn’t make me flinch but the thought of the IV scares the crap out of me. The ER nurse got the IV in first try and I didn’t even feel it. . The surgeon and the OR staff were just as amazing. The moment I woke up in recovery, I was in pain but that heavy and miserable nausea I had been feeling for months was immediately gone. I mean I was nauseated from the anesthesia but that heavy, overwhelming feeling was completely erased. Although the scan did not show any stones, when they took my gallbladder out they said it was full of stones so it was a really good call to go ahead and get it out that night.

The bad news of the surgery was that I am full of adhesions. He didn’t take them down for the fear of them coming back worse but he can pretty much guarantee that I will have future obstructions and problems with adhesions. It was one of those things I knew but it hurt having to hear it out loud. He said that the surgery would take away the nausea and the upper-quadrant pain I was feeling from my gallbladder but that I would still deal with considerable abdominal and pelvic pain despite the surgery. His guess was that I would likely have another obstruction within four years. That scares the crap out of me. My obstruction experience was so traumatizing that the thought of reliving it possibly multiple times takes me to a place where I have no words.

The two takeaway points from this are:

1- Trust your gut. I knew something was wrong and I knew that I need to keep pushing until I found the answers. I would not have thought that my primary care doctor that I saw maybe once a year for cold or infection would have been the one to save me but he took the time to listen and he fought for me just as much as I did and I will forever be grateful for that man and what he did for me.

2- Follow your passion. I had let this blog lay dormant and yes, I had good reasons but I allowed my passion to be swallowed up in the yuck I was dealing with and I don’t want to let that happen again. This blog means so much to me. This community has saved me so many times over the years and I want this community to continue so that hopefully it can help save others. Living with chronic illness can be a lonely existence if we let it and I just want this to be a place where, yes, we can commiserate about the sucky parts of chronic illness but we can also find hope, joy, grace, encouragement, and love. I hope its a place where we can find the beauty in the every day.

 

I’m still recovering from surgery but I plan to bring A New Kind of Normal back to life and I am excited about things to come! I want to get back to the roots of spreading hope and sharing my faith but I am also excited about incorporating my love of makeup in a little bit too! Thank you to LucaLogos for the beautiful new design! I hope you guys come along for the ride!

chronic illness

My Battle Cry (& Giveaway!): Speaking Out For Endometriosis Awareness

Blogging For Endometriosis

 

I cannot believe that Blogging For Endometriosis Awareness 2015 campaign is over! The month blew by! I hope you have enjoyed the posts of this year’s campaign and I most definitely invite you to mark your calendars for next year’s campaign! I am really hoping to make a monthly Blogging for Endometriosis linkup so I will keep you updated with the details!

This week’s theme is: My Battle Cry: what message are you determined share with every breath that is within you to make sure the world knows the truth about endometriosis?

As I have mentioned, I love, love, love Skillet (my next tattoo will definitely be Skillet inspired). We are a total panhead family! Their song “Sick Of It” inspired this year’s theme and their song “Battle Cry” inspired this week’s theme!

You’re on the edge of giving up
You know I feel it too
You won’t be alone because
I’m with you
Bring the fire, bring the smoke, bring the rain
We will bend but we will never break

I cannot put into words how important it is to find a support community after being diagnosed with endometriosis or any chronic illness. I was lucky enough to find GirlTalk, which was a support group for ladies with endometriosis that were under 25. That group of ladies saved me in many ways. I loved that I was able to serve as the program director for several years. It is so important to know that you are not alone and have a group of people that can support you during the tough times.

It seems like no one knows
How you’ve been feeling
You’re hiding all your hopes
You stopped believing
It’s not over, we’re one step away
We will bend but we will never break

One of the other messages I want to be heard is to make your voice heard. Chronic illness is a big deal and not nearly enough is being done to correct the problem but together we can raise our voices to make a change. Together we can choose hope and make a difference.

I believe we can’t lose
Even mountains will move
It’s my faith, it’s my life
This is our battle cry
They can’t take us down
If we stand our ground
If we live, if we die
We will shout out our battle cry

Two messages that I will speak until my dying breath are 1) God’s grace and love will change your life and with it everything is possible; and 2) Endometriosis and other invisible illnesses are serious problems and more needs to be done to find long-term treatments. Education and awareness are extremely important and together we can shout our battle cry and fight for change!

Let it rise like a prayer in the night
Shout for love, shout for hope
Let them hear us

Together we can make a difference and share the love, hope, and passion in our hearts with the world!

What is your battle cry?

 

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It is time for the final giveaway! Congratulations to last week’s winners Cheryl, Shelley, and Nikki! You should have received an email from me so let me know if you did not receive it!

This week’s giveaway is sponsored by Seaview Jewellery and FJJ Creations! Today’s giveaway will also have 3 winners! The prizes are a beautiful endometriosis awareness keychain created by FJJ Creations and a beautiful necklace and charm both created by Seaview Jewellery! Just like last week, be sure to click over at Diane’s blog for more opportunities to win awesome prizes from Seaview Jewellery, FJJ Creations and Tabetha’s Creations!

Blogging For Endometriosis Giveaway

This week’s giveaway will run until Saturday, April 4th and 3 winners will be chosen!

To enter:

1) Leave a comment telling me about your battle cry.What message are you determined share with every breath that is within you to make sure the world knows the truth about endometriosis (or another issue important to you)? (mandatory)

2) Tweet about this post and giveaway and then leave me a 2nd comment letting me know you did & include the link to your tweet!

 

I hope your week is off to a fantastic start! Remember to take a stand this week because we’re sick of this!