More Robot, More Human

Hi friends! How are you?!

As many of you know, I went through the SCS (spinal cord stimulator) trial recently. I have to tell you that overall it was a success! Here is how the week long trial went…

The day of the procedure if I’m being honest, was brutal. I was sore from where the leads were inserted, and it wasn’t particularly comfortable to lean back with the battery pack taped to me. The other problem was that I was in a ton of pain in my mid back. It wasn’t from the procedure or device however; I believe I pulled a muscle in the shower that morning. Don’t ask me how…I really don’t know…just that talented I suppose.

The day after the trial was amazing! The severe pain in my left leg was gone. My low back, down to my toes felt so much better. I woke up and moved about the house without waddling and wincing. I was able to lift my knees toward my chest without pain. I was able to lie flat on my belly without excruciating pain. I even stood for long periods of time without needing a pain killer. When my family checked in on me to ask how I was, I responded with “I’m good” and for the most part, really meant it. These are some things I hadn’t been able to do in years, and I was loving every moment! I felt so confident that this was the solution I needed, that I called my surgeon’s office to schedule my consultation for the permanent implant. His schedule fills up fast, and I didn’t want to delay things any longer. I will see the surgeon on the 30th of this month. With the last 3 surgeries, he was able to do them within a couple weeks of consultation.

Days three through six were just as great as far as pain relief. With minimal activity, I was getting 80-90% pain relief, and with more activity, 60-79%. To give you a better understanding of how awesome those numbers seem to me, a trial is considered successful if a patient receives 50% pain relief. What drove me crazy was the desire to take a real shower and to get that dang medical tape off my back. Otherwise, I really didn’t have any complaints.

The day the trial leads were removed, I felt happy to get the battery and tape off my back. I was also a little sad because I knew the pain would be coming back soon.

The red dots near the spine, are where the leads exited. The redness on the left side is from the bandages that held the battery in place. I seem to have a sensitivity/allergy to the adhesive/glue.
These are the leads that were removed. I will spare you the picture of them dangling out of my back. The removal was uncomfortable because they gave a little resistance, but it wasn’t necessarily painful.

The device rep said I may continue to feel pain relief for a day. Sadly, by that night my low back began to ache, and by the next day I was hurting more. I am now back to the usual 8-10/10 on the pain scale. I am holding on to the hope of permanent pain relief being right around the corner. I just need to hang in there a little longer. I know that getting the permanent implant will make me a little more of a robot (with the hardware that’s already in place), but honestly, when the trial was in place, I felt more human than I have in a long time. Maybe you all can start calling me roboJ2019 😆.

As always, I appreciate all of your positive vibes, well-wishes, and prayers! Thank you for your love and support.

With love,

J♡

Now Taking Appointments (Procedure Day)

Do you have fuzzy television reception? Are your radio stations not coming in crystal clear? Book now! Just place J♡ next to your electronic device and receive the reception you deserve! All for the low, low price of “just kidding”!

Today was procedure day and although it was not mentioned, I am curious if the wire leads in my back will improve reception and/or WiFi signal. To the best of my knowledge, the procedure went smoothly. I had the IV placed in my hand and was sent back to the waiting room until the device rep arrived. Once he did, I was brought back in to discuss what type of pain relief we were looking to achieve and what to expect over the next week. I’m not allowed to shower; only sponge bathe the essentials. It’s 111 degrees here…I really didn’t think this through. The rep told me that once the leads were placed, they would wake me up a bit so he could ask if the signals were reaching where they were needed. He told me I probably wouldn’t remember that part. He was right.

In the procedure room, they had me climb up on the table and onto my belly. They said because I’m tiny, they had to pile pillows for me lie on. Two people squishing down these pillows so I could climb up…I found this rather amusing. I was told when the medication would go into my IV to relax me. I was worried they might stick me before I fell asleep, so I kept tapping my fingers to the music so they would know I was still awake. I felt more medicine run through my veins and felt very warm. Next thing I know, I’m climbing off the table and into a wheelchair. It felt like everything only took a few seconds, but I guess the procedure actually took about 30 minutes. The device rep talked to me once again and gave me the controller for my device. They gave me a juice pouch, removed my IV, and sent me on my merry way.

The last couple of days, my left leg had been in so much pain I could not get comfortable. I’m happy to report that it does feel much better already. My back on the other hand, hurts something awful. I was told I would be sore for the first few days probably. The device rep will check in with me by phone several times this week. Those will be the only times I should use my controller if necessary.

The lumpy looking spot on the left is the external battery.
Ooooh my very own controller.

Well I’m a bit tuckered out and a nap sounds pretty good right now. I will try my best to update with how things are going day to day. Thanks for all the love and support!

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♡

I’ve Been Slacking – Update Time

Oops! I didn’t realize I let so many days pass without posting. So let’s see, what has been going on around here?

Well, there’s this…

Soooo close to THE day! I’m down to my last pain killer. Actually, a quarter of a pain killer, which in a way is a good thing. No pain pill means that pain will really build up, and while I’m not thrilled about that, it will allow me to really see just how well this scs device works. Yesterday was a bad pain day, today was worse, and I’ll have to wait and see what tomorrow brings. I can only hope and pray that it plays nice. I am contemplating doing some YouTube videos during my trial to give updates. Maybe it would help others who are considering or about to go through this procedure. I’m not one for public speaking though and that is close enough to it. Plus, I’ve never liked the sound of my own voice on video or phone, ha. I’ll let you know what I decide.

The kids have been gone since Friday night. They are now on vacation with their grandparents, soaking up beautiful weather and ocean waves. Here’s the purse (finished) that I made for my daughter.

She absolutely loved it! Then again, that girl would be thrilled to receive a crayon drawn heart on a piece of paper.

I did also make that backpack I talked about, for my son. He liked it, but his response of cool, thanks, is more his personality.

A pocket on the inside for smaller things:

Maybe he’ll use it, maybe not, but at least he has it just in case. Either way, I had fun with these projects.

It’s been a little strange not having the kids home, but kind of nice. Do I miss them? Heck yeah! Am I also enjoying the calm in the house? Oh yeah! Any parent that says they can’t stand to be away from their kid, is either a brand new parent or from a different planet. I’m teasing. It is nice though, to have some downtime and take care of me for a bit. Speaking of which, my sweet husband told me yesterday that I should go and get my hair cut if I wanted and buy a box of color if I like. I did, and it felt wonderful! I’m working on growing my hair out, but it was close to mullet status…no thanks! A quick cut had me feeling much better already. I picked out a deep red color and dyed it at home. Add a little makeup and I felt genuinely happy and girly. When you’re in pain and such, a lot of days are filled with messy hair and pajamas. So even though I didn’t have plans, just getting a fresh look made me feel more human. Does that make sense?

I suppose that is all for now. Hugs to whoever may need one. Wishing you all a great day/night.

With love,

J♡

You Say

You Say by J♡

You don’t want to know what I have to say

You say you’re trying to keep negativity away

Well this is a part of me, but pay attention and there’s more you’d see

You don’t understand because it’s not affecting your life

It’s changed mine, but I put up a hell of a fight

If only you’d read the words on your screen

You’d see what I’ve accomplished and be proud of me

I’m finding my passion while hopefully helping another

Something you’d notice if only you’d bother

I’m exhausted trying to get your attention

I’ve wasted tears just hoping you would listen

You say you want negativity out of your life

So when you ask how I am, I’ll tell you I’m alright

I will tell you that I’m doing fine

If only for your own peace of mind


Thank you for reading.

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♡

Some Happy News for Me

I haven’t been very good with my posts this week; I’m sorry. It is partially because I’ve been busy. If I’m being honest…it was partially because I was pouting.

Tuesday was the day I was supposed to receive a phone call with an update about insurance approval and scheduling of the spinal cord stimulator trial. I waited, but no call. I don’t like to be a pest, so I decided I would wait until Wednesday and call them in the afternoon. Then I decided, no, I’ll wait until Thursday; that’ll be one week from the last conversation with the coordinator.

Well, I waited with my phone all day yesterday, like a teenage girl waiting for her crush to call on the landline. Nothing. I waited until about 10 this morning and gave a call. Answering machine…damnit. I left my voice message and true to my nature, apologized for pestering her. She called me back about an hour later, and guess what?! Insurance gave the approval and I am now scheduled!!! I will have the procedure done on the 25th and then have the leads removed on July 2nd. I cannot begin to tell you how excited I am for this! I have confidence that this is going to work, and that I’ll be able to get the permanent implant after, and life will be better.

There is a downfall to my good news though. It just so happens to be scheduled during the week we were supposed to go on vacation. The kids will still be able to go with their grandparents. I told my husband he should go and have a great time. He declined and is choosing to stay here with me. How sweet is that? I’m beyond blessed to have his love and support, even though I know this procedure terrifies him.

That’s all for now. I hope you all have something in your day that makes you smile. Take care.

With love,

J♡