Merry Christmas, friends! I know this year has been a tough one, but I hope that you are finding some peace and joy in the next couple of days.
It happens every year…I gripe about the Arizona summer temperatures, anxiously await Halloween, and then boom, it’s Christmas Eve. I don’t understand why the year seemingly drags on, and then is in fast forward after Halloween. What I do understand, is that just like every other year, it is suddenly Christmas Eve and I am fighting with all my might to not have a meltdown. Don’t get me wrong, I love the get-togethers on Christmas Eve and Day, but the time crunch of it all definitely adds to my stress and anxiety. Thanks to bad pain days, functional Dystonia, and (let’s face it) my inner procrastinator, I am left scrambling tonight to finish wrapping gifts, wishing I had made more homemade gifts, and baking cookies for Santa with the kids. I’m trying to decide when would be the best time to shower. I’m contemplating skipping a dose of my meds so I don’t sleep in too late. I’ve considered taking it earlier, but if I do, it will make me tired and there’s just too much to do. We’re on a time schedule to get to family’s house in the morning, which means we need to wake up early in order to not be rushed through our Christmas at home. I know these things I’m stressing over may not seem like a huge deal, but for me they are overwhelming. I can feel a dystonic episode brewing and I am praying it stays at bay. I’m a bit like a computer…too many commands and I’m bound to freeze up and shut down. This is also problematic when it comes to get-togethers. The multiple conversations taking place in one room, the crinkling of wrapping paper being ripped away, and any type of background noise…it’s a complete sensory overload. Sensory overload, equals lights on, no one is home.
Well, I better get back to the ‘to-do’ list before I short circuit; I’ve already spent more time on this post than I alloted myself.
Wishing you all a wonderful, joy filled, safe, and stress free holiday. God bless.
Hello, dear friends! Beware, there is an ass-hat on the loose. If you receive anything from me (comments, etc.) that seem out of character, please reach out and let me know. I received an email through my contact page tonight that I am not happy about. This is the first time I have had to deal with something like this since starting my blog. Have any of you received something similar? I’m sharing screenshots so you can see what I’m talking about.
To the lovely individual who sent this to me, there are some things you should know:
My site/”business” doesn’t generate any money.
I’m fairly certain my net worth is a negative number, so good luck with that.
Oh yes, I’ve done it! I’ve broken the rules. I’ve become a rebel. I’ve put up the Christmas tree before Thanksgiving (gasp!), and you know something…I don’t feel bad about it. Not. One. Bit. This has been a really rough year, and I am ready to be in the Christmas spirit. While I pieced together the artificial pine and wrapped it in lights, I added my off-key vocals to the sweet sound of the Christmas classics. We may wait until after Thanksgiving to add the ornaments, and that would be okay. Just putting up the tree and staring at it’s glow in a dark room was just the mood lift I needed, and oh boy did I need it.
When I saw the neurologist last week, he and I decided that it would be a good idea to increase my antidepressant (one of them). I know that it takes a while for these things to build up in your system. If ever there was a time when I needed it to happen quickly, it’s now. I have felt myself slipping back into my darker depression days and if I’m honest, it was worrying me. Old, unhealthy coping mechanisms were just one impulse move away. I fought hard to push those thoughts and urges away, and more than once cried out to God ‘I need your help’. He heard my cries and saved me from myself like he’s done so many times before. I know that my depression is a daily battle, but I also know that I don’t have to fight it alone. I wish this was something I realized many years ago when self harm was the weapon of choice in my battle.
While I enjoy the beauty of the tree lighting up the room tonight, I will focus on the real Light in my darkness and be thankful for His love. You all are in my thoughts and prayers. If you’re in a battle right now, keep fighting; you’re not alone.
Hello, friends. I’m afraid I have some bad news. Yesterday afternoon, Heaven gained a wonderful woman. God calls her Child. Those she left behind call her Mom, Friend, Nana, Granny. I call her Grandma. She is a beautiful, smart, witty, crafty, talented woman who will be missed tremendously. She loved with all her heart and gave hugs that could ease your pain. She had the motherly/grandmother intuition that let her know when something was wrong. Sometimes she would text me, ” Nik, you can’t hide things from Grandma. You can tell me anything”, and I could because I knew that she would keep my secrets safe. She and I had a grandma/granddaughter sleep over some years ago that didn’t quite go as planned. We kept saying that she owed me another one. I told her last night, “you owe me a girls night when I get there”. I know that hopefully that won’t be for a long time from now, but I wanted her to know I hadn’t forgotten about it. The pain of losing her keeps coming in waves. Her going Home yesterday was completely unexpected and the whole family is hurting and a bit in shock. I would like to ask you all to please pray for peace and comfort, especially for her children, most of whom are living across country. I know that this must be especially hard on them being so far away. My uncle who was living with her is going to have a lot to handle and could use prayers for peace, comfort and strength.
I Guess God Needed You More
I just spoke to you on Friday
It was so good to hear your voice
We’d talk again I was sure
But I guess God needed you more
You were going to stop by tomorrow
You had a box of food for us
You said you’d leave it outside the door
But I guess God needed you more
Christmas will be here soon
I had your gift all planned out
I was going to paint the picture you asked me for
But I guess God needed you more
I’ve been terrible about calling
We didn’t visit nearly enough
You still had plenty of time in this world
But I guess God needed you more
Friends, hug those around you, pick up the phone, make the trip. We are not promised tomorrow; let them know now how much you love them.
Good morning/afternoon/evening! While I’m still struggling to put together complete thoughts, I figured I would share some of the things bouncing around inside my noggin.
Some days I feel like I’ve lost my marbles. I found some among my craft things, but I’m not sure they are mine.
Those little captcha things you have to do when downloading something…they make you check the “I’m not a robot” box. Every time I click it, it feels like a lie. With all the screws and battery and wires from my surgeries, I think I am part bot.
I feel guilty that I am unable to work and contribute financially. The guilt doubles on days that I struggle to complete housework.
When someone cracks a joke about me not having a job, it’s not funny. It makes me feel useless.
I need to start making Christmas gifts, but the procrastinator in me says I’ll probably be finishing them two days before Christmas.
When someone asks how I am doing and I reply with, “good, thanks”, it doesn’t mean my chronic health issues have gone away. It means that at that moment, I am tolerating/hiding it better.
I miss driving.
As I was looking through the “stats” page and noticing the different countries views are coming from, it filled my heart with joy. When I started blogging, I never imagined more than a handful of people wanting to read my words. From the bottom of my heart, thank you.
I’m contemplating writing a letter to the man who stole a part of my childhood.
I do not like the way my voice sounds on the phone. I thought I was 33, not 12.
I had to think about how old I am. Yes, 33 is correct.
I’m over this covid crap, the elections, and city life. I want to move to the middle of nowhere and be neighbors with the trees and wildlife. Maybe someday.
There ya have it, you’ve rummaged through some of the junk drawer that is my brain. Be well, my friends.
Oh hello there, lovelies! How are you? I would love to tell you that I have some amazing excuse for my absence, but that would be a lie. More than anything, the guilt I’ve felt about not posting had me contemplating quitting my blog altogether or starting over. I did what I seem to do best, avoid the issue and then apologize (again) for my absence. I realize that at some point you may tire of all my “I’m sorry” posts. So if you’re still here to share in my journey, from the bottom of my heart, thank you! I will try to do better. There’s been many things taking an emotional toll on me lately and I’m trying so hard to stay upbeat, but you guys, I’m struggling. Because some of these things involve other people, I need to be respectful of their privacy. I don’t know if you all know this, but I’m kind of a self-proclaimed expert bottler; and so I will use my expertise to bottle up these emotions as well. As for the issues that are not so personal…I’m sure you all have noticed how much hate and division there seems to be everywhere you look. People are so divided about politics, the pandemic, equality and so on. People are arguing and name calling constantly. I try to just stay in my own little bubble and not let other people’s actions affect me, but it’s heartbreaking to see/hear. When did we become so focused on being right that we forgot to care about and love one another? When did we lose our ability to have civilized conversations and learn from each other? I know we can all do better. For now, I will concentrate on seeing the good in people and do what I can to show kindness to those I interact with. Taking a break from social media may be a good idea as well. On to the health stuff. Fibromyalgia continues to be a pain in my – everything. I’m feeling as though I must be in a flare because some days, it feels like I’ve been hit by an 18-wheeler. Side note – that’s never happened – maybe not a fair comparison. The pain clinic thought it would be a good idea to go back on pain killers for a bit. Good ol’ insurance has me waiting until they receive prior authorization. I have my muscle relaxers, but they don’t do much for me. Unfortunately, I’m still having my attacks (Psychogenic Dystonia). Although they are less frequent, they still hit pretty hard each time. Several of these episodes left me so sore that I was sure I had pulled a muscle or two. Let’s talk about laughing until (or while) you cry. Pseudo Bulbar Affect…uncontrollable laughing and or crying that is not appropriate for the circumstance. I hate these episodes more than the dystonia. I hyperventilate, sweat like crazy, and then sob between fits of laughter. I feel like I’m not in control and it scares me. I’m so thankful that these episodes don’t occur very often. The neurologist said there is a medicine he could give me, but I really don’t want any more meds. I think I’ll hold off as long as possible. I really don’t leave the house much, so I’m not too concerned about the embarrassment these cause. My kiddos understand them, but it does scare them a little. They try to leave the room when possible to offer me some privacy and allow me to not feel like such a spectacle. I’m sure there is more I wanted to share with you, but the thought train seems to be leaving the the station without me. Anyway, I really hope you all are doing well and staying healthy and happy. God bless you and yours.
I had my first appointment with the movement disorder specialist on March 12th. The office itself was so inviting, filled with comfortable couches and warm colors. It did not have that typical sterile doctor office feel to it, though it was very clean. Coupled with a friendly staff, it certainly took some anxiety out of that first visit. While in the first room where the nurse takes the vitals, I started to have an attack. By the time we (my husband and mom were with me) made it to the the doctor’s office down the hall, I was going in to a full attack. I was thankful for this, as the doctor was able to see firsthand what these are like. Let me tell you, this doctor is the best one we have seen in all our years of searching for answers.
He was kind and very patient. He made careful observations and asked plenty of questions. My husband and mom did their best to answer when I couldn’t get the words out. Once my body decided to settle down a bit, the doctor started talking about his plan of action. He said that he felt it was possible that I may have Dystonia and Psychogenic Movement Disorder. He mentioned the possibility of something called dystonic storms. He asked the nurse to check with insurance about any pre-authorization for tests.
By the time we checked out at the front desk, we were scheduling all of my tests.
To our surprise, we didn’t have to wait weeks to complete them. The first one I did was the neuropsychological evaluation. It consisted of a short interview with a very nice neuropsychologist who specializes in movement disorders, and roughly two hours of tests that evaluated memory, cognitive thinking, and mood. At the end of that visit, the doctor was able to tell me that my cognitive thinking and memory appeared to be in good shape. This scarecrow does have a good brain. She said that she could see that my health issues were of big conern and that yes there is some depression and anxiety present. I must admit, that appointment was mentally draining.
It took two more trips to the office to complete the other tests. I’ll be honest, some of them were uncomfortable and even painful. It didn’t help that I was having attacks during some of them, I’m sure. I have one test left to complete, the ambulatory EEG. I will be getting this hooked up on Tuesday and will wear it for three days while going about daily life. My follow-up with the doctor is set for April 13th. With any luck, the results will come back quickly and maybe they will be able to squeeze me in sooner. I finally feel like we are going to get answers. I am so very thankful for this doctor, my amazing family and friends, and all the love, support, and prayers. Thank you, God!
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. 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.