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.
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?
Have you ever felt like there was no one you could talk to, even when there was? Have you kept your innermost thoughts from your trusted loved ones, because you didn’t want to cause them worry or add stress to their life? Have you ever felt like you couldn’t talk to a therapist because of fear that they might lock you up? Have you purposely avoided checking certain boxes under the “mental health” portion of your medical evaluation paperwork, for fear you’d be seen as unstable? If you answered yes to any of these, then welcome to my boat…grab a life vest and a paddle; I’ve already packed the snacks.
Not too long ago, I was dealing with some pretty dark thoughts. While I know that I would not act on any of them, I don’t know that others would be so easily convinced. I didn’t want to tell my family because they already have enough to deal with. I didn’t want to tell my therapist, because although there is a doctor/patient confidentiality, I feared my words would somehow make their way to other parties. I was really feeling like I needed to carry the depression box all by myself. I did finally tell my husband about the box, without emptying all of it’s contents.
This is something I’ve been wanting to talk about on here as well, but the timing was not right. Even now, I am trying to choose my words carefully.
What are your thoughts, am I maybe being too cautious? I wonder if similar views/fears are the reason why a lot of people suffer in silence. Although most of those dark thoughts have subsided, it feels good to be able to share some of what I’ve been holding onto. Thanks for allowing me a safe space to do so. Also, sorry in advance for any typos or if I’m not making as much sense as I think, as I’m still on loopy pills (pain killers). Sending hugs to whoever may need one. If you ever need someone to talk to, please don’t hesitate to reach out to me.
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.