♪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

Attention: Prayer Warriors

My dear friends, I know it has been a while since my last post. I have been struggling, and I plan to talk about it in a later post, but tonight I have a favor to ask. If you find it in your heart and have a moment to spare, would you please say a little prayer for me?

Thank you. God bless you and your loved ones.

With love,

J♡

This Past Week and a Sloth’s Adventure

Hello, everyone. I’m sorry it’s been a while. While we were out of town, I tried to stay off my phone so I could focus more on family time. I really don’t have an excuse for not posting/reading since being back (I got home late Thursday night), other than guilt. I have this horrible habit of letting something slide, whether it be calling someone, missing a medication dose, posting on the blog, and so on. The first oops, I feel bad but think, I’ll do it tomorrow for sure. The second day I forget, I get mad at myself. The third day, I feel guilty and instead of facing things head on, I let the guilt consume me and more or less try to run away from it. Does this make any sense? It’s a habit I’m trying hard to break. I will try to do much better from here on out.

The few days we got to spend out of town were wonderful, even if I did come home with lobsters for legs. A short amount of time in beautiful cool weather while the sun is shining, can do a lot of damage. Wear your sunscreen, kids. Since this was a last minute trip, I forgot to grab my antidepressant. The first day was okay, but the second day I started to feel it. Thankfully, I called the pharmacy and was able to get a few pills. Because it wasn’t time for a refill, insurance wouldn’t cover it and we had to pay for them. Oh well. One of the days there, the husband and I hung back while the grandparents surprised the kids with a trip to the amusement park. They had a blast! We could have joined, but I really didn’t think my body would be able to handle it. When they returned, my son surprised me with a little sloth for surgery day. He bought it with his own money. It was such a sweet and thoughtful thing to do and I absolutely love it! He named the sloth Mr. Cuddles, and he made sure I had him with me as we left for the airport. The kids would not be back for a couple more days. The kids were a little bummed that were leaving, so I decided Mr. Cuddles would have an adventure. I sent these to my father in-law to show the kids:

Waiting our turn to board

Flight safety is important

Pushing back

Hard to see, but he stole my coffee. Apparently it calms his nerves.

We remembered to get the boogie boards

Home at last. Time for a snack.

The kids thought the pictures were cute and I was told it put a big smile on my son’s face. That’s all I wanted.

The day after my husband and I returned, we were headed to my Mom’s to pick up the dogs. About a mile from her house, we hear a terrible sound coming from under the hood of my car. Next thing we know, the engine cuts out and we were luckily able to coast into a parking lot. The car has been towed home and now it must sit until we can replace the engine.

Yesterday, anxiety and depression were being nasty little “bleeeeeep”. I had two big meltdowns. I tried so hard to fight it off by staying busy, but it was no use. I don’t know if it’s because I messed up my medication or too much excitement in one week. Today has been better, I just feel wiped out. On that note, I will wrap up this post. I hope you have all had a great weekend.

With love,

J♡

Today was Better

I still don’t feel quite right, but I will take what I can get. Thankfully, no headache or panic attacks today. It was a nice relaxing day, hanging out with the kids. My son made a game, where he left little notes around the house with objectives on them. I then had to find said notes and follow instructions. In the end, he jumped from behind the door and scared me. It was fun. If you hadn’t already guessed, he’s big into gaming.

My daughter made a lantern in class before the school year ended. Today, she taught me how to make them. We’re almost done, but here’s a peek at what they look like. She gave me designs to use and made sure that I practiced them before using them on the paper lantern.

I like painting and like many 8 year olds, my daughter enjoys putting paint all over her hands. So we also made this.

I’m going to hang it in the bathroom for the little kids that come over and tend to forget to wash.

Lastly, some time in my happy place. A new bag. All it needs now, is a little paint, jewels, buttons, or all three if I’m feeling a bit wild.

Oh yes, one more thing…I just want to say that I appreciate you all so much! Maybe it’s my pain pill talking. Maybe I’m just a sappy gal. Either way, I hope you all know that you have made such a positive change in my life. Your support means so much. So many of you feel more like family. You all are in my prayers every day.

With love,

J♡

I Had a Bad Day 😣

Today (technically yesterday, now) was a bad one. As the whole family has been keeping some late Summer nights, it started like most days…waking up close to 11am, except today started with another massive headache. The kind where you don’t want to move, be in the light, hear noise, talk, or even chew your food. It was like a nightmare of a hangover, but without the party story to tell. My mom stopped over and brought us all lunch. I hardly touched it and took a couple of Tylenol. Fibro and back pain also thought it was time to play. Sharp pains through random body parts, skin that felt bruised to the touch, back pain pain that wrapped around the front like labor pains.

Just minutes after my mom left, the fun really kicked in. I walked into the laundry room and suddenly a wave of doom washed over me. I felt like a horrible memory had been triggered, but no idea what that memory was. I slumped down, back against the washer and told the kids to see if Nanna had drove away yet (she’s very familiar with panic attacks) or to get their dad. I wanted to cry. My body felt like it was being heated from the inside, out. I felt like I had a fire and tingling inside my head. The sense of doom passed quickly, but it was a scary feeling.

The kids allowed me some time to nap, which helped with the pain, but I still wasn’t feeling quite right. As I went into the laundry room, the same sense of panic set in. It felt just like the first time. Maybe this one was triggered by the recollection of the first one. Once again, the sense of doom passed quickly, but the tingling fire feeling stuck around for hours. Even as I type this, my head doesn’t feel right. I text my mom and she offered to come back over since my husband had to work. I declined because I knew she was busy, but then she said she was heading over. I’m glad she insisted. She was also sweet enough to go pick up my antidepressant.

I believe that little pill is responsible for much of today’s excitement. Ok, actually I’m responsible – er, irresponsible. I ran out of my little happy pills a couple of days ago and kept forgetting to pick up the refill. I do okay if I miss one night, but two or more throws off my groove. I guess this time, my groove went far away. I took my pill tonight, but I know it might take a couple days to get my system right. I will not make this mistake again. Today has been hell, but tomorrow will be better – hopefully.

Thanks for reading. I will try to make tomorrow’s post a little more happy. Take care, friends.

With love,

J♡

⛈My Favorite Weather⛈

Hi, friends! It’s the end of May, the clouds are out, and it’s a chilly 75 degrees…IN ARIZONA! What?! If you’ve been following along for a while, you know that cold, gloomy weather is my favorite. The more gloomy it is, the happier I am.

My mom and I were talking about this recently. We were actually out shopping and she could see the change in my mood as the dark clouds started to roll in. She and I have a couple theories about why this is.

Here is my mom’s theory, which makes a lot of sense to me. They talk about balance. Maybe because on the inside, I feel dark and gloomy, when the environment (the weather) matches, I feel and am more balanced.

Here is my theory. When the weather is cold and gloomy, I am able to bundle up in my pants and warm sweater, where I feel comforted and protected (think about how a weighted blanket makes you feel when you’re anxious). When the sun is shining and it’s hot (remember, AZ gets in the 100 degree temps), it requires wearing lighter, more breathable clothing, leaving me feeling exposed and vulnerable.

What do you all think; are we on to something?

Happy Wednesday, everyone. May the weather bring what makes you feel happy.☺

With love,

J♡

Not Again…Failing as a Parent

Grrrr and a whole jar full of swear words! I did it again. I slept through the 6 alarms on my phone, the big alarm clock in the bedroom, and both the kiddos’ alarms. My daughter opened my bedroom door at 7:45 (the time we should be walking out the door) and told me the time. I frantically jumped out of bed and went to wake up my son. I was telling both of them “don’t panick, but hurry and get ready”, while trying to hide the fact that I was panicking.

We made it to school just before the second bell rang. There were about 8 other cars in front of us in the drop off lane outside the office. I watched my kiddos get through the front door, but I don’t know if they made through the next doors without having to get a tardy pass.

I feel like I am totally failing as a parent this school year. I remember, I used to wake up around 5:30 each day, despite how late I would go to bed. Now, it doesn’t seem to matter how much sleep I get; I struggle to wake up. I know part of it has to do with my medication that I talked about here, and hopefully I can get that straightened out when I see the physician on Friday.

It is just so frustrating. I feel like I am letting my kids down, jeopardizing their academic success, and causing them unnecessary stress. I’m sorry kiddos; Mommy will get it together soon, I hope.


Wishing you all a stress-free day.

With love,

J♡

Skipped Doses

I’m struggling these last couple days. I kind of knew it would happen, but was hoping it wouldn’t. I’m now sitting in that uncomfortable place of just existing and randomly bursting into tears and just a splash of irritability. Ugh, I know better than to skip my nightly dose of Duloxetine (antidepressant). At least this time around it was for a good reason…well, sort of.

I only take it at night because it makes me drowsy and I already struggle with fatigue. I’ve noticed more and more lately, that when I take it any later than 7pm, I have a more difficult time waking up in the morning. On Sunday night, I accidentally missed my dose, but I woke up on time and got the kids ready and to school on time. Monday night and Tuesday morning, the same thing. Tuesday night, I took my dose late in the evening and Wednesday I slept through 10 alarms making the kids late for school. I do not want to be the reason that my kids have an excessive amount of tardiness at school, so Wednesday and Thursday, when I lost track of time and missed my 7:00pm dose, I skipped it altogether. I’m paying for it now, but at least the kids made it to school on time.

I am hopeful that next week will go much smoother and I will have my sh*t together. In the meantime, I’m so glad the weekend is here.

Thanks for letting me vent. I hope you all have a great weekend.

With love,

J♡

Stupid Little Happy Pill

Ok, so I have a sort of love -hate relationship with my antidepressant. We’ve been on again off again for the last 15 years. Two of our off periods were when I was pregnant with my kiddos, and the other breakups were because I felt I was too good for it. I unfortunately, have learned the hard way that we are meant to be together…forever. When you take an antidepressant, the last thing you want to do is stop taking them without being weaned off under the supervision of a doctor. Missing doses is not a wise move either. There have been times when this little happy pill made me feel normal and well, happy. The problem was that I started to feel so great I thought, ‘I don’t need this anymore’, but within about a week, my family could see the difference. So could I; I just didn’t want to admit it. I remember once (when starting our relationship again), I asked my doctor if I would need to take this for the rest of my life. His response was, “I would tell any patient taking this for the first time that they have a 50/50 chance of relapse if they stop. Given your history, your chance of relapse is higher”. Armed with this information, I’ve made a bigger effort to be committed to my relationship with the stupid happy pill. I still have days where I will miss a dose. Let me tell ya, I can feel it now if I miss more than two. It’s not pretty. My other struggle is that I have moments of guilt for having to take this in order to feel happy/normal. I know that I am blessed and have oodles to be happy about, but without this pill, it’s hard to feel. I was once told, “If it were medication for your heart, you would take it, right? Think of it that way; it’s something you need and that’s ok”. So, this is the mentality I’m trying to stick with. There’s no shame in doing what is best for your health. I’m married to the stupid little happy pill, till death do us part.

With love, J♡