When Rest Isn’t Restful

I am so tired. My body and brain need some rest. I cannot remember the last time that I had a restful nap or night of sleep. Even in slumber, my mind and body don’t seem to know how to behave.

I have been taking something called Restful Legs before bed to help with, you guessed it…restless legs. It does help, but the feeling doesn’t completely let up and so I usually spend the first 30 minutes kicking and twitching my feet and legs about. On nights that are particularly bad, I more or less have an adult size tantrum, wishing that I could throw my legs across the room. It’s an icky feeling when you want to crawl out of your own skin. Other times, I can feel my muscles begin to tighten and I pray that it doesn’t turn into a full blown dystonic episode. Some nights, fibro makes it difficult to get comfortable. Lie on one side, pain. Try the other side, pain. Adjust the leg pillow, no good. Try lying on my back, too much pressure. If my skin is feeling very sensitive, even the sheet hurts.

Now, I can usually get my mind to calm down long enough to fall asleep, but the dreams…my goodness, where does my mind come up with these things? Most nights I recall dreaming, but I don’t always remember what they were about. More often than not, I seem to have very bizarre, vivid dreams or nightmares. Just the other day for example, I took a nap. My odd and all-over-the-place dream turned into a nightmare. I was holding my right hand and my finger was losing so much blood that I was sure I was going to bleed to death. The nightmare felt so real that I was actually feeling pain in that finger when my husband woke me up.

I’ll be honest; I kind of wish a doctor could administer some general anesthesia that would last eight hours. Perhaps then, I could wake up and finally feel rested. I suppose that for now, I’ll keep running on caffeine and a whole lot of Jesus. Thanks for allowing me to vent. Be well, my friends.

With love,

J♡


On a happier note, I’ve been doing some painting. If you have a moment to spare, please check it out and let me know what you think. https://stormscanbebeautiful.com/shop-2/

In the Spirit of October/Halloween 🍊🎃

The stores and office buildings are looking festive. The neighborhoods are being decorated with pumpkins, fake spider webs, ghosts, and skeletons. I have yet to set out any decorations, but I thought, what better time of year is there then now, to share my own skeleton? So here ya have it, robo-human skeleton me.

Something makes me feel like perhaps we should all have gone to dinner, before getting so intimate. Please excuse my odd sense of humor…or, just go with it. Your choice ☺.

Happy October, my friends.

With love,

J♡

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♡

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♡

Getting Turned On

Oh yes, it happened…my Spinal Cord Stimulator was turned on today! It may take a couple days to really start feeling pain relief.

Oh, something I forgot to mention in my previous post…yes, the battery can be seen and felt through the skin. I don’t mind though.

This is how the rep turned on the device and paired it to my controller. It’s a giant magnet. Cool, right?!

This is my controller. That’s right, all mine and no one else’s ( I’m looking at you, Hubby).😜

The device cycles on for 30 seconds, and then off for 6 minutes. The program may need to be adjusted, but time will tell as I continue to heal.


With love,

J♡

I’ve Been Avoiding You

Hi, everyone! I hope that life has been treating you all well lately.

I’ve been avoiding posting since surgery. My body is used to Hydrocodone, but the Oxycodone they prescribe after surgery packs more of a punch. It knocks me on my butt and makes me pretty dopey. I’m trying to type this before my pill kicks in and I no longer make sense. Perhaps it’s best to have the hubby proofread before publishing.

I was told that surgery went smoothly, just a little bit of scar tissue to work around while placing the leads. I was home by early evening and enjoying a delicious sandwich. The first day home, I actually wasn’t feeling too bad. I think that was thanks to the pain meds from the surgery center still galloping through my veins.

The following days were much more painful. It hurt to do anything. Now that I’m a week and two days out, the pain is letting up; not enough to be off the pain killers just yet or drive, though.

I had my post op visit with the physician assistant yesterday and she said the incisions looked like they were healing well. That appointment wasn’t all rainbows and sprinkles though. I’ve been having my psychogenic movement attacks (I’ve mentioned these briefly before) this week, and during my appointment, I had a big attack. My body tensed up and jerked so hard that I was in tears. My legs gave out and I nearly fell, catching myself on the chair. I felt so embarrassed. My husband and the PA both assured me I shouldn’t be embarrassed, and my hubby tried his best to get me to focus, calm my breathing, and relax. I guess in a way, these are like major panic attacks. Whatever they are, they leave me feeling drained afterwards.

I get my device turned on tomorrow, and will do my best to post so you all can see what I’m talking about. For now, here’s a few little tidbits:

  • There are two incisions – one on the thoracic spine, where they did a laminectomy to attach the leads. The other is in the upper portion of my left butt cheek, where the battery now lives.
  • Both incisions are about 2 inches long.
  • I need to be careful about bending and twisting, and should not lift anything over 10 pounds.
  • My emotions are scattered all over the place, but I definitely do NOT regret doing this.
  • I’m looking forward to being healed up and feeling more human.

Until tomorrow, my friends. Thanks for all your support.

With love,

J♡

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♡