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, friends. Depression looks different for each person and we all have our own ways of handling the monster. Along with medication, prayer and writing have been great tools for me. I wrote this poem during one of my recent low points.
Before reading any further: If you are struggling right now, please know that you are not alone and you ARE loved. Reach out to a family member, friend, lifeline. Just don’t give up. National Suicide Prevention Lifeline1-800-273-TALK (8255)
A different kind of tired A night of sleep won’t fix Tears stream down Don’t want to feel like this
Must keep moving Distract the body and mind Push the thoughts away They don’t feel like mine
Focus my energy Try to lift people up Crying inside Tell others they’re loved
Know what it’s like To feel lost and alone Praying to God Please take me Home
My plea He won’t grant Not yet, but some day Right now I am needed So here, I will stay
Behind locked doors Where nobody knows Tears hit the ground While God holds me close
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.
Type the title. Erase it. Type a new title, erase it and start typing a paragraph; I’ll think of a title after. Erase my three sentences and close the app. Stand at stare at my craft things. Pick up a canvas and put it back. Open WordPress, repeat the actions I did earlier. Decide to try macrame; it turns out terrible. Open WordPress once again.
I’m struggling tonight to find that creative and happy side of myself. Maybe it’s not just tonight; I’ve been feeling this way for days. I don’t know if it is the increase in negativity I’m seeing among people, stress over personal issues, or my meds aren’t doing their job properly. Maybe it’s a combination. Whatever the case, I don’t like it. I am feeling very meh. I know how quickly for me meh can turn into just existing. For those that have been with me a while, you know that is not a place I wish to go. I have an appointment with the neurologist on Wednesday and I plan to ask him about increasing the dose of my antidepressants. I thought the combination I’m on was working pretty well, but maybe not so much. Perhaps now would be a good time to ask my family what they have observed?
There’s a ton of thoughts navigating through my brain and feelings that I would like to express. I just can’t seem to get them out at the moment, but I thought I should at least write something so I don’t slip back into the bad habit of not writing for weeks on end. That said, I wish you all a wonderful weekend. Hugs.
Hello, wonderful people! The last few months have been quite “eventful” around the world; how is everyone holding up? I realize I haven’t posted in a few months, and I’m sorry. I never intended to take such a long break, however, I think I needed it. So let’s see, the last we chatted I was in the process of testing. Here’s a look at what it’s like to wear the ambulatory EEG. I sported these fashionable wires (and the recording box/battery inside my purse) from a Thursday afternoon until that Monday Morning. Let me tell you, everything from using the bathroom, to changing clothes, to remembering my colorful locks were attached when standing, proved more challenging than I anticipated. You can imagine the joy I felt that Monday morning when I was able to remove all the leads and take a real shower. Now, I understand that a common aftermath of this test is skin irritation from having those little stickers on so long. I think I have really sensitive skin because I got to flaunt (insert sarcasm here) this lovely forehead rash for about a week. In addition to the tests I mentioned in my last post, I had some bloodwork done. The result of everything? I have officially been given a diagnosis! I have Psychogenic Dystonia and Hyperadrenergic POTS. I’ll leave links at the bottom of the post, if you would like to learn about those. As for treatment, I have started taking a beta blocker and a new antidepressant. The beta blocker seems to be helping. My legs are not as blotchy and purple as they normally are when standing. I’m also having less palpitations and feelings of being lightheaded. Want to know some more great news? I’ve only had a couple big episodes (Psychogenic Dystonia) in the six weeks I’ve been on the new antidepressant! That one was a bit trickier. The first few days, I was taking the old and new antidepressant. Then came a few weeks of just the new one. I won’t lie, I didn’t like myself very much during that time. In those days, I would have rather had my episodes if it meant I wasn’t irritable, cranky and feeling low. I called the doctor and he gave me the okay to go back to taking both antidepressants each day. I’m feeling much more balanced now. I’m thankful that my family was understanding and forgiving during that roller-coaster ride. Want more good news? Both new medications I’m on have caused weight gain and a better appetite. I have always struggled to put on any weight, but in those six weeks, I’ve gained eleven pounds! I haven’t been able to do that since I was pregnant. I’m feeling healthier with the added weight and less self-conscious. So that has been my bit of good news for you all. You know, after trying for a decade to find a diagnosis, it is a relief to have a name to put with what’s going on. It is a reassurance that I’m not crazy. I could be upset that no other doctor has been able to figure it out, but I’m not. I feel like this was the path I was meant to be on and God used me for something greater than I will ever be able to understand.
Thank you all so much for the prayers for answers. God is great!
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.
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.
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.
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.
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.