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!