A whole new ME!

This past month I stumbled upon an amazing concept called Bible Journaling. In a nutshell you spend time in the Bible (devotional/quiet time) and then you express yourself directly into your Bible with Art.

Here is a great Example from Shanna Noel's blog : here The above picture was taken from the blog post I linked you too. I have also immersed myself into a Facebook group dedicated to this. Journaling Bible Community. Find it here. This is a closed group...just ask to join!

I haven't started working in a Bible yet. I am personally waiting until I can purchase the one I want. It is a BEAUTIFUL leather journal Bible. Here it is on Amazon. Since I am waiting I have been using my Art journal and my Devotional journal. And collecting lots of ideas and supplies! But, I have noticed since I stumbled upon this concept that I have a new excitement for the Word of God. For so many years I allowed myself to have a surface relationship with God. I was hurt so many times by the church or people from the church that I turned away. Sure I prayed everyday, listened to K-LOVE and other christian music. But I lost that deep connection that comes only from spending time in God's Word. Reading, mediating and searching for nuggets of truth and promises.

Last week I found a devotional site/app that really resonates with me. She Reads Truth. I now eagerly get up in the mornings and jump into my Bible. Spending an hour or more devouring God's promises. I almost don't recognize myself anymore!

And for that I am Thankful!

Give Thanks to the Lord, for his Steadfast Love Endures Forever! Psalms 136

How does time fly?

I know I say this all too often, but I can't believe how time has flown by. I keep promising myself I will post often and then MONTHS fly by and life goes on. So lets see if I can get caught up a bit. Bullet point style:

• My hand healed great. I have amazing PT support! Every so often it starts to tighten up, but as long as I massage it and loosen the scar tissue up all is good.
• My knee still has some issues. It likes to give out every so often and it loves to swell. But recovery can easily take up to a year. 
• My hip never got better. We thought the knee was causing hip issues, or maybe arthritis. But it turned out I had a tear that needed to be repaired. However, it was too damaged and the surgeon was only able to clean up the fibers. It has healed great, except for the groin area. Still lots of pain there.
• During the MRI for my hip, the radiologist discovered that my cyst on my right ovary was still present. We are keeping tabs on it, might have to have it removed, at some point.
• Also found on my MRI was a mass in my lower back. After a repeat MRI to get a closer look, it was determined to be a Tarlov cysts. The doctor isn't too concerned, but we will be keeping an eye on it and monitoring my pain.
• I have had 2 failed epidural shots into my lower back. And 1 successful facet joint injection.
• I have maxed out my Lyrica dosage and determined that I didn't get any good results from it. Just gained a ton of weight. So I self tapered myself off of it and feel much better!! 
• We bought bikes for James and Me and the kids have hand me down bikes. We take family rides often.

Do you see that last bullet point? I am active! I am exercising! We ride several times a week and average 8 miles a ride. Crazy!! Even though I still struggle with several things, this is the BEST I have felt in years!

My sweet family is doing good. Better then good! We are Exceptional!

A week of appointments....

I was looking to my rheumy appointment with such hope. Yesterday was the big day. I had heard from several doctors that this particular rheumy was amazing, she new her stuff. I am so confused. If that in indeed fact, why did I walk away from her office with my original dx of anklosing spondylitis stripped, and hinted at a dx of fibromyalgia?!? At this time she doesn't want to lock me into one dx, so I truly was left hanging. She mentioned Arthraligias Myalagias, which google says is just joint & muscle pain. I could just scream.

However, she did spend over an hour with me and treated me with respect. She read all my files I brought from other specialist and she ACKNOWLEDGED me!  She upped the medicine I am currently taking, and is adding Lyrica...well as soon as my insurance approves it.  At least I can understand this doctor. sigh.

I just don't know what to think. My symptoms line up with As. I am HLA-B27 +, but because I have no fusing of the bones...UGH!

Monday I went to get a mammogram. Just a follow-up. Got my results in the mail today. There are scattered fibroglandular elements in both breasts. Perfectly normal. Whew! At least that is going well. I don't need to have another one for 2 years. Yippee Skippy!

Today I went to see my hand surgeons PAC. I can not open my left hand all the way. The ring finger and long finger have developed intrinsic tightness of the knuckle joint. These two joints are locking my fingers toward my palm. The PAC ordered physical therapy, but my PT is super busy and I can not be seen until next Wednesday. I am kind of afraid of what my hand will look like in a weeks time. As it is getting worse daily. If PT doesn't work, surgery may be required. Crap! Oh and did I mention that it hurts...alot.

Tomorrow I get to see the dermatologist. A first for me. Just a simple mole check.

I have also decided, to ask my PCP for some depression medicine. I am tired and overwhelmed with all this medical crap. My weight is climbing, climbing climbing. Not much I can do...Well that isn't true. I could eat better. I do an okay job, but apparently not good enough, as I am at my all time high. The rheumy told me to start exercising as if I am an 80 year old lady. Slow and easy! lol That's gonna bring the weight off real quick.

I am such a grumpy these days...This too shall pass! I WILL CHOOSE JOY.

In all things God is Good!

If we just sit and hurt, nothing will ever change for the good.

This sentence makes me sit back and truly think. I believe that my personal pain is more then physical, it is also a mental hurt and my heart hurts. 

Being ill with multiple illnesses, I am fully aware of the physical pain. My body hurts ALL THE TIME. The degree in which I am in pain varies throughout the day. Each moment is different then the moment before. When asked to specify what hurts I am not always capable of answering this completely. 99% of the time my answer will be the body part that hurts the MOST at that moment in time. To be completely honest would be too overwhelming, for myself and the questioner.

My mental pain comes from trying to keep up with the daily pace of life. Often with a massive headache. My mind is constantly in overdrive, processing the lights and sounds around me. Often I can't keep up and thoughts become a jumbled mess. Unable to process what is being said to me is almost like being deaf. I can hear the words being said, but they don't register. It is quite frustrating for myself and those around me.  Being fairly new to my illnesses, I am mentally exhausted. Trying to educate myself and those around me is my new full time job. Arranging medical appointments with doctors, physical therapy, lab work and scans, having and recovering from surgery is all consuming. Thinking about the next step and praying that the medical professionals take you seriously and acknowledge you is stressful. My mind hurts.

My heart is in pain too. The emotions of being sick can be overwhelming as well. But I think having an "invisible illness" or not having a "socially acceptable illness" causes my heart to hurt the most. Being honest here. The general public gravitate to certain illnesses. The one that comes to mind first is cancer. Sometimes it feels as if you are only truly sick if you have some form of cancer. When you say you suffer from Arthritis the reaction is "oh just arthritis". And honestly I haven't told but a handful of people about the Chiari. Why bother. One, it is quite complicated to explain and two, will they even care. sigh. My heart hurts because there is no support in my life, beyond my husband and mom.

 If we just sit and hurt, nothing will ever change for the good.

Making change for the good....

I need a game plan. I do not want to sit and allow pain to rule my life. I need to move forward. So how am I going to do that?

Physically: I plan to work towards a healthier life style. Making changes to my eating habits and my activity habits. I want to do this, I need to do this.

Mentally: I need to slow down and realize my limitations. Accept them and adjust my life to my new pace. Stop obsessing over the what ifs. And focus on the good.

My heart: I will dive into God's truths. Stop looking for others to fill His shoes. Be thankful for what I do have. Choose Joy!

In all things God is Good. In my illness God is Good. In those that disappoint me, doctors, friends and family, God is Good. My God is Good and My Good is Faithful.