Uh Oh!

Oh yes, I’ve done it! I’ve broken the rules. I’ve become a rebel. I’ve put up the Christmas tree before Thanksgiving (gasp!), and you know something…I don’t feel bad about it. Not. One. Bit. This has been a really rough year, and I am ready to be in the Christmas spirit. While I pieced together the artificial pine and wrapped it in lights, I added my off-key vocals to the sweet sound of the Christmas classics. We may wait until after Thanksgiving to add the ornaments, and that would be okay. Just putting up the tree and staring at it’s glow in a dark room was just the mood lift I needed, and oh boy did I need it.

When I saw the neurologist last week, he and I decided that it would be a good idea to increase my antidepressant (one of them). I know that it takes a while for these things to build up in your system. If ever there was a time when I needed it to happen quickly, it’s now. I have felt myself slipping back into my darker depression days and if I’m honest, it was worrying me. Old, unhealthy coping mechanisms were just one impulse move away. I fought hard to push those thoughts and urges away, and more than once cried out to God ‘I need your help’. He heard my cries and saved me from myself like he’s done so many times before. I know that my depression is a daily battle, but I also know that I don’t have to fight it alone. I wish this was something I realized many years ago when self harm was the weapon of choice in my battle.

While I enjoy the beauty of the tree lighting up the room tonight, I will focus on the real Light in my darkness and be thankful for His love. You all are in my thoughts and prayers. If you’re in a battle right now, keep fighting; you’re not alone.

With love,

J♡

♪My Diagnosis Has a First Name♪

Hello, wonderful people! The last few months have been quite “eventful” around the world; how is everyone holding up? I realize I haven’t posted in a few months, and I’m sorry. I never intended to take such a long break, however, I think I needed it.
So let’s see, the last we chatted I was in the process of testing. Here’s a look at what it’s like to wear the ambulatory EEG.

The hat helped keep the leads in place.
The kids thought I looked like an alien.

I sported these fashionable wires (and the recording box/battery inside my purse) from a Thursday afternoon until that Monday Morning. Let me tell you, everything from using the bathroom, to changing clothes, to remembering my colorful locks were attached when standing, proved more challenging than I anticipated. You can imagine the joy I felt that Monday morning when I was able to remove all the leads and take a real shower. Now, I understand that a common aftermath of this test is skin irritation from having those little stickers on so long. I think I have really sensitive skin because I got to flaunt (insert sarcasm here) this lovely forehead rash for about a week.
In addition to the tests I mentioned in my last post, I had some bloodwork done. The result of everything? I have officially been given a diagnosis! I have Psychogenic Dystonia and Hyperadrenergic POTS. I’ll leave links at the bottom of the post, if you would like to learn about those. As for treatment, I have started taking a beta blocker and a new antidepressant.
The beta blocker seems to be helping. My legs are not as blotchy and purple as they normally are when standing. I’m also having less palpitations and feelings of being lightheaded. Want to know some more great news? I’ve only had a couple big episodes (Psychogenic Dystonia) in the six weeks I’ve been on the new antidepressant! That one was a bit trickier. The first few days, I was taking the old and new antidepressant. Then came a few weeks of just the new one. I won’t lie, I didn’t like myself very much during that time. In those days, I would have rather had my episodes if it meant I wasn’t irritable, cranky and feeling low. I called the doctor and he gave me the okay to go back to taking both antidepressants each day. I’m feeling much more balanced now. I’m thankful that my family was understanding and forgiving during that roller-coaster ride. Want more good news? Both new medications I’m on have caused weight gain and a better appetite. I have always struggled to put on any weight, but in those six weeks, I’ve gained eleven pounds! I haven’t been able to do that since I was pregnant. I’m feeling healthier with the added weight and less self-conscious.
So that has been my bit of good news for you all. You know, after trying for a decade to find a diagnosis, it is a relief to have a name to put with what’s going on. It is a reassurance that I’m not crazy. I could be upset that no other doctor has been able to figure it out, but I’m not. I feel like this was the path I was meant to be on and God used me for something greater than I will ever be able to understand.

Thank you all so much for the prayers  for answers. God is great!

With love,
J♡


Hyperadrenergic POTS

Psychogenic Dystonia

Getting Closer to a Diagnosis

I had my first appointment with the movement disorder specialist on March 12th. The office itself was so inviting, filled with comfortable couches and warm colors. It did not have that typical sterile doctor office feel to it, though it was very clean. Coupled with a friendly staff, it certainly took some anxiety out of that first visit. While in the first room where the nurse takes the vitals, I started to have an attack. By the time we (my husband and mom were with me) made it to the the doctor’s office down the hall, I was going in to a full attack. I was thankful for this, as the doctor was able to see firsthand what these are like. Let me tell you, this doctor is the best one we have seen in all our years of searching for answers.

He was kind and very patient. He made careful observations and asked plenty of questions. My husband and mom did their best to answer when I couldn’t get the words out. Once my body decided to settle down a bit, the doctor started talking about his plan of action. He said that he felt it was possible that I may have Dystonia and Psychogenic Movement Disorder. He mentioned the possibility of something called dystonic storms. He asked the nurse to check with insurance about any pre-authorization for tests.

By the time we checked out at the front desk, we were scheduling all of my tests.

To our surprise, we didn’t have to wait weeks to complete them. The first one I did was the neuropsychological evaluation. It consisted of a short interview with a very nice neuropsychologist who specializes in movement disorders, and roughly two hours of tests that evaluated memory, cognitive thinking, and mood. At the end of that visit, the doctor was able to tell me that my cognitive thinking and memory appeared to be in good shape. This scarecrow does have a good brain. She said that she could see that my health issues were of big conern and that yes there is some depression and anxiety present. I must admit, that appointment was mentally draining.

It took two more trips to the office to complete the other tests. I’ll be honest, some of them were uncomfortable and even painful. It didn’t help that I was having attacks during some of them, I’m sure. I have one test left to complete, the ambulatory EEG. I will be getting this hooked up on Tuesday and will wear it for three days while going about daily life. My follow-up with the doctor is set for April 13th. With any luck, the results will come back quickly and maybe they will be able to squeeze me in sooner. I finally feel like we are going to get answers. I am so very thankful for this doctor, my amazing family and friends, and all the love, support, and prayers. Thank you, God!

Here is a link that I found informative: https://dystonia-foundation.org/what-is-dystonia/faq/


Take care friends, and as always, thank you for being here with me on this journey.

With love,

J♡