Hello, friends! Back in October, I shared with you that I had been having seizures. I did finally make it in to see the neurologist in November. He ordered a brain mri, which thankfully came back negative. He also ordered an EEG. It also came back negative. The doctor’s conclusion? Movement Disorder. He could not say what type of movement disorder; for this I would need to see a movement disorder specialist. Ugh, more referrals, more phone calls, more denials, more stress. Thankfully my momma bear came to the rescue again. Last week she found a doctor, and my appointment is set for the 12th of this month. I have a good feeling about this one; I really think we’ll be able to get some answers. We are all anxious as it has been a trying several months. For a little while the episodes seemed to let up, and I even started driving again. Unfortunately, they are back full-force and I have quit driving once more. There were four times while driving that I had these episodes. Thankfully, I was able to pull over before they went full blown. It’s too scary and they escalate so quickly. I can’t take the risk of putting my family or anyone else in danger.
I was hesitant to add this video, but I wanted to give you all an idea of what I am talking about when I mention these episodes (attacks, as we call them). My muscles tighten up and have a difficult time releasing. The positions that I end up in at times are so painful. The more severe episodes leave me completely wiped out and in need of a long nap. This video shows a mild episode that I had last night. Please excuse the goofy attire and crazy hair -it was a lazy Sunday.
I pray you all have a wonderful week. Thank you all for your patience, kindness and support.
Hello, everyone! Just in case no one has told you today…
I just wanted you to know.
Reminder: God loves us, even when we find it difficult to love ourselves. He will not abandon us. Pray and keep hanging on. Whatever it is you are going through, He is with you. You are going to be okay.
December went by far too fast, as it does every year. I hope that you all had a safe and fun New Year’s Eve. I am thankful for the memories made, the lessons learned, the blessings and the struggles that 2019 brought. I pray that this new year brings you all love and happiness!
Now that the holidays are over and things are slowing down a bit, my goal is to get back to blogging regularly. I’m trying my best to get through a depressive episode, so it may take me some time to get back into it. Thank you for being patient with me and sticking around. Lots of hugs to you all.
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.
And of course Mr. Cuddles was there with all his shenanigans…
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.
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?
I will. I have to admit that at times, I have questioned why He has allowed me to go through so much. I have realized though, that the more struggles I face, the stronger my relationship with God grows. One thing that I know for sure is that He loves me.
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.
Hi friends. I have some good news and some bad news. Which do you want first? Ok, we’ll go with bad news.
I woke up to a phone call today. I looked at the caller ID. It was from my pain clinic where my procedure is scheduled. I assumed it would be the the typical recording that always mispronounces words, reminding me of my appointment. Nope, it was a real person letting me know the doctor recommended I reschedule my appointment until next week. She said it was up to me, but if I kept my original appointment, they would not be able to give me the stronger sedation. Mind you, I was only partially awake and you know how anxious I’ve been for this, so I agreed to go with the lesser sedation and keep my appointment. After waking up my husband to get his opinion, and chewing on it for a minute, I decided to call and change the procedure day. When I called the office back, I found out that the reason for the change was because the woman who administers the sedative had a family emergency and had to call out. I have to admit that I was a little more than bummed out. Pain relief was so close, but maybe this was a sign. So instead of sulking, I will look at the positives and pray for the woman and her family. I only have to wait one more week. The new date is set for late morning on July 2nd.
Now the good news…☺
Because the plans changed, my husband and I decided to meet up with the kids and my in-laws on vacation. The best part? The kids had no idea we were coming, and their excitement when they saw us was priceless! It made my heart feel all mushy. Now we can all soak up the cool air and sand beneath our toes as a family. As a bonus, this will definitely help the time go by faster until next Tuesday.
Thank you all, for your well-wishes and support up to this point. ❤