chronic illness

Shifting Gears

Within the next month I will have four doctors appointments if you include the trip to my rheumatologist on Tuesday and if they are all as productive has Tuesday, I will be thrilled.

When I first left my rheum appointment, I cried as I once again felt like we were grasping at straws hoping for anything that might help how I was feeling.  Thankfully for the drive home, it was just me, my thoughts, and God. It was as if God was whispering in my ear to look at the bigger picture and see the positive. Once I did, I was able to see hope for the days ahead (its amazing what happens when you listen!).

The appointment started off like usual going over medications, symptoms, etc. We decided my current treatment was not working so we had some decisions to make and that’s when it happened. He asked me what options I would like to see happen. I was invited to become an active participant in my health care and if you score frequent flyer miles in doctors’ offices like I do you know that is a great thing.

We had always grouped any pain issues with fibromyalgia but had never been able to get a hand on it so I asked if we could back up and start over. I had felt like we were missing something and even though I had bloodwork done not long ago, I asked the possibility of testing a false negative (especially since I am that way with Celiac). He said it was completely possible so we started looking for other options. The joint pain the last two weeks has been pretty bad with Sunday being the worst I’ve felt in a long time joint-wise. I have started to notice some redness and swelling with some of my joints. He did an exam and he felt some swelling of the joints of my hands but not enough to make a definitely diagnosis but enough to keep an eye on.

So the new treatment plan involves two new medications – one to help with the muscle aches and pains of fibromylgia (with the added bonus of helping me sleep and possibly helping my gastroparesis) and the other is an anti-inflammatory to help the swelling and irritation of my joints.

Its only been a couple days but I am feeling really positive. I love the fact that I was able to be an active partner in deciding my health care. I felt that he not only was listening to what I was saying but that he also heard what I was saying. That is one of the best feelings in the world as a spoonie!

Now to hope my next three appointments go as well!

bloggingchronic illness

HAWMC Day 9: Keep Calm

We have all seen the “Keep Calm & Carry On” posters if you have been on the internet any length of time. Actually you now can find a multitude of products that include the phrase “Keep Calm” and followed by something like “Eat Cupcakes,” “Blog On,” or “Go Shopping.” I just so happened to be fans of all three!

For today’s assignment we instructed to create our own Keep Calm poster. As I write this post, this is the first time being back online as my family and I had a mini-getaway and I decided to go completely unplugged. No phone. No text. No twitter. It was very refreshing and it inspired me to create this poster:

Keep Calm Custom Poster

And by “Get Away” I mean get out of the house and go somewhere. It doesn’t have to be anywhere far away or fancy. In fact, as a spoonie, I would recommend not going very far – just far enough to feel away from home but not far enough to spend your spoons traveling.

Right after church yesterday morning, we packed up for a mini-trip just the three of us. We had reserved a hotel about an hour away and we were looking forward to the king sized bed and indoor pool (which was disappointing because the water was freezing!). Last night we just hung out in the room after dinner and played, talked, and snuggled. Then a miracle happened – we all fell asleep at 9:30 and slept until 9am. Seriously that is a miracle in our family! We all needed sleep! After taking our time to get ready, we spent the rest of our morning and early afternoon strolling and doing a little bit of shopping before returning home.

Our trip was nothing fancy. Nothing too expensive or glamorous however it was exactly what we needed. The last couple weeks have been rough health-wise and had really impacted the time we have been able to spend together as I’ve had to spend more time in bed because of pain. So this day away was just what we needed. I highly recommend trying to plan a mini-trip into your calendar and your budget. Again, nothing needs to be expensive or fancy as the focus of the trip will be on relaxing as a family and I can guarantee you will come home thankful for the time together.

Have you ever taken a day trip just to get away?

bloggingchronic illness

HAWMC Day 6: Mapping It Out


Today’s assignment was to create a poem but I’ve always liked a more logical approach to things so I decided to do a mind map instead. Above is a pictorial version of what I consider holistic health. Often times with chronic illness our attention is focused on our physical ailments and every once in awhile we may take note of our mental health. Many times everything else just goes to the wayside. Have you ever felt this way?


I have both hands in the air on this one. I am totally guilty.


I think that is what I’m looking forward to the launch of Sharing Our Spoons. I need to be encouraged to look at my total health. Struggling with feeling spiritually barren is just as important to my total health as physically avoiding gluten.  Having an abundance of spoons physically aren’t as much fun if we allowed ourselves to become socially isolated. Are you getting the picture?


The mind map above just includes a handful of goals possible to help you and I put ourselves on track towards the best health possible.


Do you struggle with neglecting your total health? Which area do you have the most difficult with?