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♡

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♡

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 Life, This Thursday

I feel accomplished today, but oh so drained and my body absolutely hates me. Today was one of those days where I pushed to do more than I can handle. I tidied up the house, vacuumed, mopped, took out the trash, showered, did some laundry, and most importantly kept the kids alive. I know that for many people, those tasks are no big deal, completing them multiple times a week and then some, but that’s not my world anymore. I feel like I have just worked a forty hour week. I don’t say this for sympathy or a pat on the back; I say it as a reminder to myself that I am doing the best I can and that is good enough. I often find myself feeling guilty that I don’t accomplish more daily, or compare myself to other people who tackle so much more in life. I’m trying to break this habit since it only hurts my mental and physical well being.

I found out today, that my primary insurance has approved the spinal cord stimulation trial, and now we’re just waiting for approval from our secondary insurance. The woman who handles all of this at the pain clinic, said she would get an update and get back to me by Tuesday, as she will be out of the office until then. I said to her, “sorry, I don’t mean to be a pain in the butt, I’m just anxious for pain relief”. She responded with “no, you’re fine, I completely understand”. What a sweetheart! The healthcare world needs more people like her.

My kids are amazing. I feel guilty so often that I am not the mother I would like to be, for them. They are so understanding and helpful when they know I am hurting really bad or am exhausted. They don’t mind when I need a nap and often times insist that I take one. I don’t even think they realize how much this means to me, though I try to tell them often.

I got bit by so many mosquitos today, that I am convinced there must have been on sign on me reading, All You Can Eat Buffet. When Noah was told to take two of each living creature on the arc, are we sure that mosquitoes were on the list? I need more Citronella candles asap.


Another pain pill in my body for the night and I’m ready to just do nothing.

Wishing you all a Happy whatever day it is, depending on where you are in the world. Take care, friends.

Images from http://Pixabay.com

With love,

J♡

Don’t Leave; I’m Still Here

Okay, first things first…who the heck has been praying for my patience? ‘Fess up! Whoever you are, I ❤ you and appreciate your kindness, but you can stop now. Please.

This has been a busy, chaotic, stress filled couple of weeks. So once again, I found myself neglecting my blog. This upsets me deeply, as I made a promise to myself when I started this, that I would keep up with it. I wasn’t going to toss it to the side like so many other projects I’ve started. I have a tendency to just shut down when I feel overwhelmed, then the guilt and other negative thoughts start to creep in, which makes me shut down more. When depression starts banging on the door, I don’t feel much like communicating with anyone. I’ll be honest; I’ve hardly looked at the WordPress app icon, let alone open it these last two weeks. The funny thing is, that’s probably when I should have been on the most. To connect with others on here, express the chaos that’s in my head, and read something that’s enjoyable to me, has been a tremendous help the last seven months. If I haven’t already mentioned, I’m a procrastinator at heart. This is something I want to change also. Starting now, I am going to post something every day. It may just be a picture or a couple of sentences, some days. I don’t want to bombard you with my posts, but I feel that making myself post something each day will get me into a better habit and my blog will never feel neglected again.

An update on the lab work I had done and the spinal cord stimulation trial:

My bone density scan hasn’t really changed since my last one, four years ago. It still shows osteopenia. I am thankful that it has not progressed to osteoporosis. All of my bloodwork came back normal. The 24 hour urine collection I had to do, could not be completed due to not having enough sample. I can’t help that I didn’t have to pee much that day, sheesh. So now I have to redo that test. Oh yes, the ever so fun, tinkle into a plastic ‘toilet hat’ and then pour it into a collection jug, every time for 24 hours. Grossed out, yet? Who comes up with these tests anyway?

I had my one time visit with the psych doctor for the stimulation trial (nice guy). He explained that the insurance company requires this visit because the trial and permanent placement is a very expensive procedure and they want to make sure that the pain doctor, psychologist and you all feel this is the right option. After hearing that and answering all the paper and oral questions, I had a different interpretation of why they require the visit. The procedure is expensive and insurance wants to make sure that they are not going to fork out all this money, if you are just going to turn around and take your life. I know that sounds grim, but that’s the way my mind processed the information, sorry.

Now that I’ve had that visit, the PA at the pain clinic has submitted a request for the trial. Of course, it has to be approved by insurance before I can schedule. More waiting. In the meantime, she wrote me another prescription for hydrocodone, which I’ve been having to take daily. My eleven year old doesn’t like this and “lectures” me, because apparently they learned the dangers of opioid use, at school. I’m all for him being educated in the matter, and I hope he never ever needs them, but spare me the talk. I wouldn’t take them if I didn’t need them.

Are you tired of my babbling yet? I really just wanted to say that I’m still here, sorry I’ve been slacking, and thanks for sticking with me. I hope you all are doing well. Until tomorrow, friends.

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♡

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♡