Hello, my friends! I hope you are all doing well. I have missed you. We are getting ready to sell our home, so I have been busy weeding through the clutter we have accumulated and packing up the important things. This is going to be a huge change for us as we are moving out of state. So long, Arizona! I will do my best to document the journey along the way.
Today though, I wanted to talk (again) about Fibromyalgia and other chronic “invisible” illnesses. So often, those of us who “don’t look sick” are judged based only on what others see and their lack of knowledge and understanding. I recently had an argument with someone close to me about this matter. Sadly, I know they are not the only one who feels this way. They perceive me as someone who is lazy because I cannot work, but they see that I have done other projects around my home. What they don’t see: medication to get through the pain, tears, restless nights, naps, fatigue, and three days of recovery. Try as I might to not let someone’s opinion of me get under my skin, it does. I try to keep in mind, that it is hard to comprehend what it is truly like dealing with chronic illness, until you have been through it yourself. Again, I wouldn’t wish that on anyone. I thought I would share some images that depict what my days are like with Fibromyalgia.
Being in pain every day for the last thirteen years, is enough to make to make me want to give up. Knowing that I will likely be in pain every day for the rest of my life, is enough to make me want to give up. Having a body with an unusual way of dealing with stresses, anxiety and depression, is enough to make me want to give up. Yet, I don’t give up. I won’t give up. I wake up every day in a battle with my own body, and I go to bed the same way. I try my best to put a smile on my face, push through the pain, and do as much as my body will allow me, in order to take care of our home and family. Often times, this results in me paying for it over the next couple of days.
I don’t share all of this because I want sympathy. No; what I want, is understanding. It baffles my mind that people are so quick to judge me and people like myself. We get labeled as lazy or unwilling to work. We get labeled as antisocial or flaky. It’s true what they say; sometimes you have no idea what someone is going through until you have walked in their shoes. Here’s the thing though, I wouldn’t wish these shoes upon anyone. It is a battle every day, and every day I get through it with God and the support of my family.
What I would like, is to be believed. To be understood. Sadly, there are some people who will never understand. Not because they can’t, but because they don’t want to. It does not matter that they have witnessed the struggles with their own eyes. It does not matter that they have read the medical papers that you have provided them. No; it’s much easier for them to slap a label on you and call it a day. These are the people that can make you feel “less than”, but let me tell you something…you’re not “less than” and neither am I. We ARE enough. We are more than enough.
Be well my friends, remember your worth and God bless you.
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.
When pain exists every day, I can almost guarantee that any extra activity is going to exacerbate symptoms. Shoot, some days taking a shower is considered over-doing it. This is just from chronic low back pain and my dear frienemy, fibromyalgia. Add in confused sweat glands (autonomic neuropathy) and a heart that likes beating too fast (POTS), and I’m potentially a disaster waiting to happen. I know that if I overdo it, I will be completely wiped out. I’ve also learned that my psychogenic dystonia episodes are more likely to kick me in the butt if I do too much. It’s not just the mental stress that brings about episodes; when my body is physically stressed, it says okay, we’re shutting down now. Except, maybe I’m more like a robot that glitches before it powers down. After all, I do have a battery and several screws in my body…
Back to my point…I’m learning to accept that I need to take breaks and to cut myself some slack when I don’t accomplish what I intended. For example, the other day I was bouncing between laundry, cleaning the kitchen and other chores. My son said, “Mommy, you’re doing a really good job, but you need to stop and relax the rest of the day. You’ve done too much the last couple of days. Stop before you have an episode”. Well, I partially took his advice. I continued to do a couple more chores and then relaxed. The kid is pretty wise, because sure enough later that night, I had an episode and oh was it a doozy. I was coming in from the garage and as I reached the door, I just stopped in a lights on, no one is home kind of way. Once I had my focus back, I tried to take a step with my right foot. Instead of planting on the ground, my foot tightened, turned inward and that leg drew up towards my chest (maybe I’m a flamingo?). The more I tried to put it down, the further up it drew. My back, left hip and leg tightened in a way that twisted my posture. So there I was standing at the door, clinging to the door knob and the garage shelf, trying to figure out how I was going to get inside. Can I hop on one foot? Can I make it to the ground and try to crawl or scoot? These are terrible ideas. I opened the door the best I could without falling and hollered for my daughter because I figured she would hear me best (the boys were playing video games). She checked on me and ran to get my husband, who had to awkwardly carry and place statue me on the couch. By the time we reached the couch my hands and arms had tightened up and pulled inward too. I told my husband I would be fine and that I would just let it run it’s course. The muscles have to tire out eventually, and they did over an hour later. My family is really good about trying to help massage or trick the muscles into letting go, but they have to be careful as it can be extremely painful. Sometimes it is best to just leave them be. Needless to say, once everything relaxed I was extremely sore and exhausted. On the bright side, my daughter kept me company during the episode by watching my all-time favorite movie as a child, Labyrinth. Side note: she said it was good and she didn’t seem to mind me reciting the entire movie.
I have a long list of things I want to accomplish today, but I think I finally learned my lesson. Instead of trying to complete all my chores at once and then shut down, I’m forcing myself to take a break between each task. I’m using that break time to play a game on the computer, write this post, or anything else that will allow my mind and body to de-stress a bit. If I don’t complete my to-do list today, it’s okay; those things will still be there tomorrow.
I hope you are all having a wonderful week!
Here’s a sneak peek at the painting I’m working on.
If you are interested in seeing more work, feel free to drop by my page and let me know what you think. ☺
I am so tired. My body and brain need some rest. I cannot remember the last time that I had a restful nap or night of sleep. Even in slumber, my mind and body don’t seem to know how to behave.
I have been taking something called Restful Legs before bed to help with, you guessed it…restless legs. It does help, but the feeling doesn’t completely let up and so I usually spend the first 30 minutes kicking and twitching my feet and legs about. On nights that are particularly bad, I more or less have an adult size tantrum, wishing that I could throw my legs across the room. It’s an icky feeling when you want to crawl out of your own skin. Other times, I can feel my muscles begin to tighten and I pray that it doesn’t turn into a full blown dystonic episode. Some nights, fibro makes it difficult to get comfortable. Lie on one side, pain. Try the other side, pain. Adjust the leg pillow, no good. Try lying on my back, too much pressure. If my skin is feeling very sensitive, even the sheet hurts.
Now, I can usually get my mind to calm down long enough to fall asleep, but the dreams…my goodness, where does my mind come up with these things? Most nights I recall dreaming, but I don’t always remember what they were about. More often than not, I seem to have very bizarre, vivid dreams or nightmares. Just the other day for example, I took a nap. My odd and all-over-the-place dream turned into a nightmare. I was holding my right hand and my finger was losing so much blood that I was sure I was going to bleed to death. The nightmare felt so real that I was actually feeling pain in that finger when my husband woke me up.
I’ll be honest; I kind of wish a doctor could administer some general anesthesia that would last eight hours. Perhaps then, I could wake up and finally feel rested. I suppose that for now, I’ll keep running on caffeine and a whole lot of Jesus. Thanks for allowing me to vent. 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.
So often over the last decade, I have found myself saying I miss the old me. Which old me was I missing though? Was it the grade school me, who really didn’t know anything? Was it the high school me, who cared what everyone thought, was self conscious, felt like a burden and was lonely? Was it the me who would self harm in a desperate attempt to feel in control of something? No, these were not versions of myself that I liked very much.
After thinking about it more, the me that I was missing, was the me I am supposed to be. I am still figuring out who that is, but I’m finally enjoying the process. Now that I have been on my new medicine for a while, my appetite remains that of a teenager, my weight is staying up, I have more energy, and for the most part my mood is good. I think I really like this me that is emerging, flaws and all. Having said that, I feel like now would be a good time to reintroduce myself.
Hi, my name is Nicole, but most of my family calls me Nikki or Nik. Of course I will still answer to J or Jo (as some of you sweetly nicknamed me). I have a wonderful husband and two kiddos that stole my heart. To be honest, my favorite nickname is the one they call me…Mommy. I am currently 33 years old (though sometimes I have to really think about it) and living in Arizona. I was born and raised here, with the exception of a couple years after I was born, living in Pennsylvania until my parents divorced. It really isn’t where I want to be, at least not in the valley. I long to live somewhere that is surrounded by green, has all four seasons and rains often. I love cloudy days and thunderstorms. Those are my favorite days and are especially good for crafting. My sewing table is one of my happy places. I also enjoy painting and doing any kind of crafts. Hot glue guns are fun…and dangerous…careful, boys and girls. I love to dance and sing, though I’m not particularly good at either. Actually, there are some that may argue that I’m tone deaf. I consider myself a shy person, but around people I am comfortable with I am quite the goofball. I have an addiction to coffee, dark chocolate, and mixed-berry smoothies. I am a woman of faith and have seen God’s love work through all of my pain. He has saved me from myself more than once. I do not talk politics with anyone outside of my immediate family. Please do not ask me to do so; I’ve seen friendships and families fall apart over them. Anxiety, depression, POTS, psychogenic dystonia and fibromyalgia are things I will talk about most, because they are a part of my daily life. I will also share bits of randomness with you, like pictures of sloths (my favorite), just to lighten the mood. I used to be so self conscious, that I could take plenty of “selfies” and decide that none of them were good enough to share with anyone – forehead is too big, smile isn’t right, too many smile lines, etc. I’m learning how to love those things too and stop worrying so much. God made me the way He wanted and I need to appreciate that. Plus, I want to share my story with you and that means the not so pretty stuff too. I want to show you the real me and what life is like in that particular moment.
When I began blogging, I wasn’t sure anyone would really care what I have to say. What I’ve learned so far is that there are people who do enjoy reading my words and have found them helpful. If I can help a single person by sharing my story, then I am happy. Writing is a good therapy tool for me as well. I have also found an amazing community that is supportive. I am so thankful for all of you. I thank you for taking the time to get to know me (again). God bless you.
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?
Pain has stolen a lot from me, but my odd sense of humor always seems to go unscathed. As many of you know, this last surgery was the fourth spine surgery in just over two years. I made a little song about all my robotic pieces:
You’ll need to sing this in the tune of “1 little, 2 little, 3 little…”
1 big, 2 big surgical screws
An interbody cage, and 3 more screws
A generator and some wire leads
These are the parts in my body
I hope you’ve enjoyed my little jingle. Was I on pain pills when I made this up? I’ll never tell. Okay, yeah I probably was.