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♡

Please Don’t

Don’t assume that because I’m smiling, surely I must be happy. Sometimes it takes all that I have to wear a smile, but if you look into my eyes, you will see that they disagree.

Don’t assume that the things I did yesterday, I will be capable of doing today. My pain is unpredictable and always present. It can change from one minute to the next. It is likely that yesterday’s activities have drained me of my energy and my pain tolerance will be lower today. It may take me three days to get back to where I was yesterday.

Don’t insist that the treatments your aunt, friend, or coworker used will help me just because it helped them. We may have the same illnesses, but how they affect an individual varies greatly. If you think I haven’t tried remedy a, b and c, you are mistaken.

Don’t tell me the things I should do to “cure” my fibromyalgia. I’m not giving up, but a cure doesn’t exist at the moment (do your research). I accept that fibro is now a part of my life and do the best I know how to keep moving forward.

Don’t assume that I am exaggerating how I feel to get out of plans or responsibilities. The amount of guilt I feel each and every day, is more than you can imagine. I feel like a burden. I’m no longer invited to social events. I feel like I let people down constantly.

Don’t mock or continuously question my illnesses just because you don’t understand them. If I try to explain them to you or give you resources to read, listen to me and read the information. If that still doesn’t satisfy you, there are plenty other resources online.

Don’t tell me I should just be more positive. I’m trying my absolute hardest; I promise.

Don’t tell me that others have it far worse than I do. I’m well aware of this and trust me, I feel guilty when I complain. This doesn’t mean however, that my struggles are not valid.


Rant over. Thank you for allowing me to vent. Sending big hugs to whoever may need one.

With love,

J♡

Pill Bottle Fort

I kind of feel like building a fort out of all the empty pill bottles I’ve hoarded, and staying in there all day with a nice cozy blanket. My mood is meh, I woke up with a migraine, and fibro is being a bully…waaaah 😢.

The ones that decorated the top of the fridge

Since this is not realistic, I will push through and clean/organize the house instead today. I suppose I’ll finally get rid of the empty bottles too.

I wish I were a sloth.

Take care, friends.

With love,

J♡

Fibromyalgia is a Pain in the AskWhatDoesn’t Hurt

Pain free days are long gone. I haven’t had one of those in ten years. To be honest, I’ve forgotten what that feels like. The only thing that exists now is a good pain day or a bad pain day. The thing with fibro is that it’s like a rollercoaster; you can feel mild pain one minute and BAM, the next minute you’re struggling to do anything, the pain is so intense. I feel like this is why anyone who doesn’t have fibromyalgia, has a hard time understanding it (I’ll be doing another post on this issue later).

On a good day, maybe only the arms and legs hurt, or the all over pain is mild enough that I can complete all my tasks without being in agony. Most days are not like this. In the event that I do get a day like this, I tend to over-do it, catching up on everything fibro wouldn’t allow me to do the day(s) before. This in turn means that I will spend the next two to three days paying for it. Today is a bad pain day. Everything hurts. I’ve got a headache, my neck is sore, my arms, hands and legs feel as though they will surely break if I move wrong, my ribs feel bruised to the touch, my clothes are irritating my skin. I’m not looking forward to showering because I know that the water hitting my skin and shaving are going to hurt. This is only one of the gifts fibro has to offer. There’s also fibro fog and fatigue, which I will address in another post. Today is the type of day where I want to crawl into bed and stay there for hours, but I can’t. So I will do my best to push through the pain, try to smile when in company, and hope that tomorrow will be better.

Gentle hugs to my fellow fibro warriors. Remember, we’ve made it through our bad days so far and we’ll make it through this one too.

With love, J♡