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!
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.
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.
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.
As many of you know, I went through the SCS (spinal cord stimulator) trial recently. I have to tell you that overall it was a success! Here is how the week long trial went…
The day of the procedure if I’m being honest, was brutal. I was sore from where the leads were inserted, and it wasn’t particularly comfortable to lean back with the battery pack taped to me. The other problem was that I was in a ton of pain in my mid back. It wasn’t from the procedure or device however; I believe I pulled a muscle in the shower that morning. Don’t ask me how…I really don’t know…just that talented I suppose.
The day after the trial was amazing! The severe pain in my left leg was gone. My low back, down to my toes felt so much better. I woke up and moved about the house without waddling and wincing. I was able to lift my knees toward my chest without pain. I was able to lie flat on my belly without excruciating pain. I even stood for long periods of time without needing a pain killer. When my family checked in on me to ask how I was, I responded with “I’m good” and for the most part, really meant it. These are some things I hadn’t been able to do in years, and I was loving every moment! I felt so confident that this was the solution I needed, that I called my surgeon’s office to schedule my consultation for the permanent implant. His schedule fills up fast, and I didn’t want to delay things any longer. I will see the surgeon on the 30th of this month. With the last 3 surgeries, he was able to do them within a couple weeks of consultation.
Days three through six were just as great as far as pain relief. With minimal activity, I was getting 80-90% pain relief, and with more activity, 60-79%. To give you a better understanding of how awesome those numbers seem to me, a trial is considered successful if a patient receives 50% pain relief. What drove me crazy was the desire to take a real shower and to get that dang medical tape off my back. Otherwise, I really didn’t have any complaints.
The day the trial leads were removed, I felt happy to get the battery and tape off my back. I was also a little sad because I knew the pain would be coming back soon.
The device rep said I may continue to feel pain relief for a day. Sadly, by that night my low back began to ache, and by the next day I was hurting more. I am now back to the usual 8-10/10 on the pain scale. I am holding on to the hope of permanent pain relief being right around the corner. I just need to hang in there a little longer. I know that getting the permanent implant will make me a little more of a robot (with the hardware that’s already in place), but honestly, when the trial was in place, I felt more human than I have in a long time. Maybe you all can start calling me roboJ2019 😆.
As always, I appreciate all of your positive vibes, well-wishes, and prayers! Thank you for your love and 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. ❤