Medical Issues

Hello, everyone. How are you?? Can you believe it’s October already? I think it’s been close to a month since my last post. I will try to fill you in on what’s been going on without making this too lengthy.

First, the good news; my spinal cord stimulator is working great to alleviate the low back and leg pain (most of the time). I have to admit that the second to third week of recovery was really tough. My body went into a huge fibro flare to the point where I actually feared myself for a moment. There were a couple of nights where I couldn’t sleep and hurt so bad, that I thought I might go temporarily insane and try to claw the device out of my body. I know that sounds gross, but in those moments, I wanted to crawl out of my own skin. My back hurt and I could feel the wires just under my skin…it made my stomach feel sick. All that is better now, thankfully. Just when things start to be looking up though, life likes to throw a surprise party.

Do you remember the “psychogenic movement attacks” that I’ve mentioned before, and how I had one of these at my post-op appointment? It turns out, they are actually seizures and I’ve been having them every day, multiple times a day. The first time it was given this label was at a doctor’s appointment to check thyroid levels and such. I had an episode during my appointment and thankfully, the doctor was able to identify what it was. Not being his particular field though, he could not say what type it was or why it was happening. He was going to reach out to a colleague for help.

The next day, we were running late to pick our son up from school. I had a seizure just as we were trying to leave the house. We make it not quite a mile from the house when the police lights and sirens are in our rear view. My husband was pulled over for a broken taillight. As the officers were running our information from their car, I went into another seizure. My husband jumped out of the car to notify them and Fire/Medical was called. I do not lose consciousness during these, but become less aware of what’s happening outside my little bubble. The officers notified our son’s school while I was being checked out. I declined being taken by ambulance to the Emergency Room, and would have my husband take me there right after we got our son. The ER placed an IV, started fluids, and drew blood. I was given an anti-seizure medicine and sent for a CT scan of my head. Right after the scan I had another episode. This time they gave me a more powerful medicine. My CT came back normal, so they sent me home loopy and half asleep, and told me to follow up with a neurologist.

The next morning, I had a follow-up at the surgeon’s office. Guess what? Another seizure. Another Fire/Medical call. I declined going to the hospital at all this time. I wasn’t going to have them inject another knock me on my butt medication and send me home. A waste of time in my opinion. I finished my appointment and left with another neurologist referral.

A couple days later, I got in to see the physician assistant at the pain clinic. I had a seizure while there too. She wanted to call 911 but I begged her not to. Out of respect for our wishes and because she’s seen me for four years, she agreed but was not comfortable with it. At this point, I was having four to eight episodes a day. She prescribed me a strong muscle relaxer and sent in a referral to the neurologist.

The next week was filled with searches to find a neurologist that accepted new patients and our insurances. The seizures were leaving me so tired and I had what I thought was a cold, so I was spending a lot of time in bed. My hubby told me I should try to get up more so I didn’t catch pneumonia. Well…

I went from low fevers, to shivering cold, not sweating and spiking a fever of 105 before finally going to the hospital. This time was a longer visit. I was admitted that Thursday night an stayed until Saturday evening, to treat sepsis and pneumonia.

Selfie because hospital gowns are glamorous

And of course Mr. Cuddles was there with all his shenanigans…

He has a coffee addiction
“Not that button!”

I’m feeling much better from that now, just still lacking energy.

I had a follow-up with my family doctor for the hospital visit and also to get another referral to a neurologist (as required by insurance). You guessed it, another episode. This time, he was able to say that he thinks these are temporal lobe seizures. But of course, the neurologist will have to make an official diagnosis. We actually left that appointment feeling relieved. We finally felt like we knew what we were dealing with.

As long as I take my muscle relaxer every eight hours, the seizures are less frequent and less intense most days. After a lot of hoops we had to jump through and some drama, I finally have an appointment scheduled with a neurologist for the 23rd of this month (thanks to my momma bear). In the meantime, I can’t drive and kind of need a babysitter. I also found this information the other day; and I’m not too thrilled about it, but I understand.

I will try to keep you posted as much as I can. Take care, my friends and God bless you.

With love,

J♡

Fighting, With Help

I try my hardest to smile for you

You know me so well, that you see right through

Beyond the laughter and words I speak

You uncover the secrets I try to keep

I was afraid my demons, would scare you away

You reassured me that, you are here to stay

You told me that, you’ll love me forever

And through all the storms, we’d walk together

I know with your help, I’ll be alright

So one more day, I’ll continue to fight


Thanks for reading. You are not alone…keep fighting. Sending a big hug to whoever needs one. 💌

With love,

J♡

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♡

Yes, I Do This Sort of Thing Often 🎶

Pain has stolen a lot from me, but my odd sense of humor always seems to go unscathed. As many of you know, this last surgery was the fourth spine surgery in just over two years. I made a little song about all my robotic pieces:

You’ll need to sing this in the tune of “1 little, 2 little, 3 little…”

1 big, 2 big surgical screws

An interbody cage, and 3 more screws

A generator and some wire leads

These are the parts in my body


I hope you’ve enjoyed my little jingle. Was I on pain pills when I made this up? I’ll never tell. Okay, yeah I probably was.

With love,

J♡

Have You Ever?

Have you ever felt like there was no one you could talk to, even when there was? Have you kept your innermost thoughts from your trusted loved ones, because you didn’t want to cause them worry or add stress to their life? Have you ever felt like you couldn’t talk to a therapist because of fear that they might lock you up? Have you purposely avoided checking certain boxes under the “mental health” portion of your medical evaluation paperwork, for fear you’d be seen as unstable? If you answered yes to any of these, then welcome to my boat…grab a life vest and a paddle; I’ve already packed the snacks.

Not too long ago, I was dealing with some pretty dark thoughts. While I know that I would not act on any of them, I don’t know that others would be so easily convinced. I didn’t want to tell my family because they already have enough to deal with. I didn’t want to tell my therapist, because although there is a doctor/patient confidentiality, I feared my words would somehow make their way to other parties. I was really feeling like I needed to carry the depression box all by myself. I did finally tell my husband about the box, without emptying all of it’s contents.

This is something I’ve been wanting to talk about on here as well, but the timing was not right. Even now, I am trying to choose my words carefully.

What are your thoughts, am I maybe being too cautious? I wonder if similar views/fears are the reason why a lot of people suffer in silence. Although most of those dark thoughts have subsided, it feels good to be able to share some of what I’ve been holding onto. Thanks for allowing me a safe space to do so. Also, sorry in advance for any typos or if I’m not making as much sense as I think, as I’m still on loopy pills (pain killers). Sending hugs to whoever may need one. If you ever need someone to talk to, please don’t hesitate to reach out to me.

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♡