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Clonazepam Still Sucks

Posted on July 6, 2022 by Georgia's Pampering

I’ve decided to go with the Round app to help give me a reminder window to take the antihistamine. It’s a little awkward in some ways, but it is easier than the others I tried. I’m not going to give the doctor a record of taking the medication, so I don’t need something better.

It takes about an hour before my symptoms are more manageable once I take the medication. I’m kind of thankful for that, because then I know for sure if I still need to take something to help me and that it isn’t building up in my system so I won’t be going through another version of the withdrawals.

I’m able to now figure out the cause of some of the symptoms. My body can’t regulate temperatures yet or my blood pressure, so if I try to move a bit I’ll often get dizzy, altered vision (I know from my time working at the Neuro office that the rhythmic darkening at the edges of my vision is blood pressure triggering “floaters”), and have about half an hour of strong involuntary movements. I haven’t figured out yet what is messing up my perception of my body though. I know logically where my ear drum is, but it’s all itchy and noisy right now, so when I tried to clean a bit out I knew to stop, because I couldn’t actually tell from the sensations where I was cleaning. I can’t walk well because I don’t seem to know where exactly my feet are. I can’t get utensils to put food in my mouth very well and often stab or prod my lips when I try to eat, which I then have to use both hands to get it into my mouth otherwise I’ll shake so much it falls. I often have bouts of insomnia still that the medication helps override at about thirty hours from when I last slept, but after that first dose it doesn’t knock me out except when it overrides the insomnia. I’m betting that I got knocked out from the first few doses because my body was so exhausted, whereas now I’m not going multiple days without even a nap.

I also get weird rounds where I’m super emotional and have trouble being logical, but the worst part is I don’t realize I’ve spiraled until I’m a few hours into a bout (I’m sure it’s noticeable in my writing but right now I’m not with it enough to fix it). Since I like to take advantage of the time I am doing well, I forget to also write. So I’m sorry that I’ve probably been a bit crackers when I’ve written. LOL I guess that it’s the most accurate glimpse into what this does to the brain and how my experience is.

Although I’m avoiding social media for the most part while my brain is so wonky, I’ve been catching up on The Mighty, a chronic illness/disorders/diseases community. I get overwhelmed with how many emails I get overall, so feature filled emails like the daily to weekly ones I get from Mighty tend to get deleted instead of read. Sometimes it is also difficult to be reminded of my disability. I know that seems odd, but I want to be as honest as possible. I often need a distraction from being disabled and all of the challenges. I try to interact and be encouraging/supportive of others who are reaching out when I can, and right now is a good time when I’m more stable. Coincidentally I had an email from Mighty in my catch up folder full of memes about depression and some are rather amusing to me. I thought I’d share a few that really stood out to me. I tried to black out curse words that may offend others, but it’s hard to do that when I have trouble with my coordination, so I apologize now if it’s not marked out enough for your preference.

So accurate and sarcastic lol

Also pretty applicable for the advice to get “over” Fibromyalgia. lol

Uncomfortably true, although some is from the whole religion issues that skewed my self esteem.

True lol

So accurate right now!

This so fits my nerdy personality lol
And this last one that fits perfectly with love of charts and spreadsheets

Hopefully at least one is amusing for you too! I wanted to try to have a bit that’s less solemn than I’ve been lately. 😁

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Clonazepam Sucks Post 4

Posted on July 5, 2022 by Georgia's Pampering

(I’m sorry. I wrote this a few days ago and was apparently too out of it to post it.)

So today sucks too. Not that any previous day was much better during withdrawal honestly. I found this information on the Addiction Center’s website about why Clonazepam causes withdrawals and wanted to share it.

“Over time, the body stops producing certain chemicals, called neurotransmitters, due to the body being provided Klonopin daily. The body stops creating these neurotransmitters because the addict provides the brain with a manufactured flush of chemicals, meaning the brain no longer needs to create them itself. When the dosage of Klonopin suddenly decline or use is completed stopped, the system is thrown off balance, creating a rise in various physical, emotional and cognitive withdrawal symptoms, including shaking and seizures. Addicted individuals need to gradually cut down their Klonopin use because the withdrawal symptoms are potentially lethal.”

I definitely think they need to change the wording, since I don’t appreciate being called an addict when it’s something my doctor prescribed to me and I took even less than directed, but it’s a clearer explanation for why this occurs. Again, emphasis on not even trying to taper or discontinue it by yourself. My symptoms are worrisome enough the past twelve hours that I spoke with the nurse covering for my concierge PCP (long story, but I have a regular PCP and then the concierge, who I’ve been in the care of for years now and still maintain my care remotely). She gathered information about how I’m doing, what dose I had been able to taper down to, duration, etc. She’s going to contact the doctor as a possible urgent matter to get guidance since I’ve gone this long into detoxing but I took it for so long that I’m still a higher risk patient. If I’m going to write about why you shouldn’t go through this without help, then I should utilize another avenue of assistance that I have. (I don’t see or talk to her regularly, so I honestly forgot I could get guidance from her. All I had in mind once the psych went MIA were the doctors I started seeing where I now live. Proof of cognitive issues during the withdrawal if I couldn’t remember I have a doctor in another state that I can turn to if needed. Doh!) So, I took my own advice that I shouldn’t do this alone and when I started looking through my contacts to see who I could reach to give me reliable guidance I was reminded that I have another option available, since I don’t want to go to a rehab or hospital. I’ll update with what I am advised to do once the nurse is able to speak to the doctor (being on maternity leave, I figure it may take a few hours)…

So I’m going to start taking Hydroxyzine; basically it’s an antihistamine but the sedating effect helps with a variety of symptoms such as hives and anxiety. It’s non-habit forming and doesn’t have any of long lasting effects like benzodiazepines do. And the best news? I am now in the safe zone, theoretically! There’s still a chance, of course, and actually there’s a risk for symptoms to drag out for years even, since I took it for so long. I did the best that I could to reduce how much was in my system before starting to detox, although it should have been for a few months. The antihistamine should tamp down on most of my symptoms…

(Next day)

Well, it’s been interesting. The Hydroxyzine helped me fall asleep and quiets some of the worst symptoms. Unfortunately they come back with a vengeance as it wears off and often I don’t realize it’s time to take the next dose. I’m going to try out medication apps to help me keep track, since almost every hour feels like a whole day and I can’t keep track mentally.

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Clonazepam Sucks Part 3

Posted on June 30, 2022 by Georgia's Pampering

(Continued from the three days’ worth of trying to write/dictate about this experience.)

I had to talk with my husband to see if he was comfortable with my openly discussing what we discovered works best for me for getting through the withdrawals. It’s controversial to some of society and (as usual with me) it doesn’t line up with society’s “norm”. A doctor prescribed medicinal marijuana (I’ll shorten to MJ from here on out) to hopefully treat not just the mental aspects but also a lot of physical ones too. Working with how my body reacts and the dispensary’s assistance (they’re not usually wasted just because they work in a dispensary, I discovered. If they’re dosing it’s because they also have a condition that is being treated and are passionate about this avenue of treatment, so they have a ton of knowledge!), we found a few products and doses my body responds to. I can only do edibles because my lungs are too weak and I’ve also seen first hand what COPD can do when you’ve smoked. It’s too risky for me to smoke anything, even a vape. So it’s been a rough and odd road to find out what works best with my body.

CBD alone doesn’t do squat for me, although I think some of that could also be the dosage sizes I tried. At least for now a predominant THC percentage works best. Indica doesn’t have the “in da couch” effect on me, possibly because of the Clonazepam receptor stuff. CBG seems to be something that helps though. 30 MG of THC with full terpenes (as full as we can manage at least), in concentrated form, mixed into rice treats, seems to be the right balance of finding relief without being off my rocker. I don’t like the oiliness or taste, especially when my taste buds register bitter more strongly than usual, so I have to put some chocolate underneath it to be on my tongue when I bite/chew. I have so much trouble with nausea and if the THC is still bitter I sometimes can’t stop my stomach revolting. It’s disguised and discreet, and kept secure, so Little Man doesn’t have access or know. He has a package of bakery ones to make it less noticeable if he sees me eating one. It’d be hard to make sure he understands the difference between medicinal and what everyone cautions him to not do, and that something that helps me isn’t good for him. Kind of seems like a double standard that isn’t necessary.

I get almost 12 hours of partial symptom management right now. I have tons of symptoms still, but it’s massively less than it would be otherwise. Like I documented before, I don’t think this is survivable without help. If the physical issues didn’t take me out directly, then I honestly think I would have gone insane. (Not the amusing kind you kid about – the actual padded room kind.) My body, brain, and thoughts are just a big ball of exposed wire and the electricity keeps shorting out. Every little thing is intense. Trying to move, speak, think, and even see, are so difficult despite the MJ. It cuts down on the raw wire feelings and pains though, and helps reduce the extremes of the highs/lows. Only another GABA drug would stop the Clonazepam withdrawals and I will never take another again if I can avoid it. I’d be swapping one evil for another that might be easier to come off of. Um, no thank you.

I’m also a lot more comfortable knowing the MJ is more controllable. If I feel I can make it through 12 hours without another full dose, then I can eat a 10 MG store-bought gummy to keep everything a bit more steady. While I tried to find a way to make it easier to eat the homemade, and when things were excessively extreme, I ate 25 MG gummies as needed, too. Sometimes it’s what makes me sleep when the withdrawals won’t allow me to otherwise. I know from it taking us a few days to discover this, that it is hard for me to form or say a coherent sentence all ready due to the withdrawals. Any fogginess the THC may be causing is minimal compared to the smog of withdrawal. The acute dizziness, the uneven world feeling the utrical-to-Fibro brain can have, and bouncing vision, settles down enough to tolerate when I keep Meclizine on board. I have to be careful between taking my pain medication (it’ll take help to prevent withdrawals when I try to stop the Tramadol even though the MJ allows me to reduce the dose sometimes), the Meclizine, and the MJ. I don’t want something to suppress my system when I’m trying to just get through the Clonazepam withdrawals. Meclizine is an OTC, but I’m cautious about the balance of having it in my system to help my symptoms but not interact with the others. I stopped taking Advil, despite it being more helpful for managing my headaches and inflammation, because my skin is a funky paler-than-usual shade and the LED strip lights in our bedroom (soft pink lighting seems to work best with my sensitivity to light while making it easier and safer to move around) make a bunch of bruises show, so I know my anemia isn’t as under control as it had been. So I take rapid release Tylenol when appropriate instead. I will continue to take the Omeprazole since my GERD definitely isn’t under control yet, and at this point I don’t think it will be until the Tramadol is also out of my body, and I learn what techniques work to keep my anxiety under control, so I don’t churn up more acid. I’m trying really hard to eat at least a little bit whenever I can and keep the hypoglycemia under better control. Getting and finding the right dose of MJ is a game changer as long as I juggle the others right, it seems. I can only hope that it truly does see me out of the withdrawals.

If I hadn’t finally found a wealth of reliable information that can be cross checked on a rehab center’s website, I’d be so scared right now. I may be somewhat knowledgeable about medical things, but I can’t understand a lot of what is written about Clonazepam withdrawals, since they’re mostly directed at physicians because patients are supposed to never go without medical supervision and assistance when tapering off of Clonazepam. Without the rehab center’s extensive lists of different symptoms, along with understandable explanations, plus tapering information and reiterating that no one should go through this without medical help, I’d think I have a laundry list of horrific new conditions. Sometimes it feels like I’m having a heart attack, or I sound and struggle with speaking as if I had a stroke, or random parts of my body will jerk around uncontrollably for hours like I have Parkinson’s or CP, or the extreme hot and cold spells that feel like something serious is going wrong, or being so overwhelmed with physical sensations that I can’t even feel where my ear drum is when my ears itch (it literally feels like I’m touching the outer area of the ear instead of the itchy part and like everything is super swollen). There isn’t a single part of my body that has gone unscathed. It’s so crazy. It even feels like my teeth will crumble any moment. These sensations go way beyond intense and diffuse pain.

I want to add links to a few great resources for information that I found, so it’s compiled in one place. The incredible rehab center (if they were in the same state I’d honestly have probably admitted myself as soon as I discovered how much information they provide and how knowledgeable they are about how the withdrawals can go. Here is their link. Here is a link to some very helpful information (I found various items than just this, so click around if you want to learn more) about MJ if you’re in a medicinally-approved or legal state and don’t know about all the different aspects. This is another site that had additional information that we found helpful, especially since it was the first time either of us had been involved in making something with MJ. If you are in the area, I strongly recommend this dispensary. They are so helpful and knowledgeable in comparison to others we tried after I got the card…

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Clonazepam Sucks, Part 2

Posted on June 30, 2022 by Georgia's Pampering

(Continued from the two and a half days’ worth of trying to write about this experience.)

And here I am almost 24 hours after I started trying to write this. It has taken that long to function enough to take care of a few things, but mostly all spent trying to manage symptoms. Thankfully I managed to get almost five hours of sleep now. I have discovered that I can only try to push myself to function for a tiny bit or else I actually cause my symptoms to worsen. With the bonus rebound of anxiety, paranoia, fear, and extreme emotions, plus the many comments in writing or in person of people telling me anecdotes about how somebody’s sister’s brother-in-law’s wife worked out really hard and now leads a productive life, all just circle like sharks, taking bites at these walls I have worked to build to prevent that type of thinking that basically tells me I’m unproductive and a failure, and if I just did whatever that person did then I would be a healthy, contributing member of society. During more rational moments like now, or when my anxiety and self esteem are more balanced, I work hard to try to eliminate that kind of thinking, because it just eats away at you, which ironically compounds the issues and makes it even harder to be healthier. If I push myself to try to cook dinner by myself, or keep up with an able-bodied person, then I’m setting myself up for some form of what is perceived as failure. What I then perceived as failure. I won’t have the energy or muscle strength to clean up after the meal, or I’ll get overheated while trying to move around and it literally makes me collapse on the floor, or then I’m too exhausted, which drains me mentally, so when Little Man wants to talk or have attention, I can’t be there for him. I can’t be the person that I want to be for him or for anyone else if I push and my body isn’t ready. I can try to share what I can, and love unconditionally, but I need to have the mental and physical energy, especially now that life includes these special gentlemen. It’s all ready mind-blowing that an 18 and an 11 year old are both capable of more empathy than most adults. They also are a lot more understanding than even I am about my having limits and remind me to be kinder to myself. It’s definitely hardest for the youngest when he has this enviable store of energy and nearly vibrates with it when he tries to be still, but the fact that he will try to block my path and ask me to please lay or sit down, while he instead takes care of whatever I try to do it, makes me tear up. When do we lose that compassion for another person? When do we start to believe another person’s contribution to life and society is quantifiable? Why do we hold ourselves and others to standards that we/they can’t meet? Especially when I’m shown that I make a positive impact whenever I can and in ways I often don’t realize. Why does that anecdote from someone who doesn’t see or understand what I am going through actually matter? So, as we decided to say, my train is in for repairs and will have a new locomotive once I am able again. 🙂

The other night there was a conversation on a show about how you’re supposed to put the oxygen mask on yourself first, and then help the person beside you, when a plane goes down, and I didn’t understand why it was so unsettling when I’ve heard it so many times before. Somehow the ping-pong game of trying to think right now resulted in my connecting the oxygen mask analogy to life and love, and how others love me when I don’t love myself. Yeah. I finally found the base of it all. That seriously sucks to realize it was the base of my doubts of my self worth. I was inadvertently guided into believing I am constantly lacking because I have never learned how to accept or love myself. And it’s difficult to acknowledge to others that a lot of it is born from the type of Faith that I was exposed to. I honestly want to erase that from even being written, but for some reason it feels like I need to put it out there, force myself to acknowledge it. I need to sift through the thoughts and beliefs in order to get to the base, to allow that foundation of love to be built, so I can truly live up to the potential of being the best that I can be. I can’t give unconditional love when I don’t love myself, when I’m focusing on what I didn’t do instead of that person’s needs, and constantly pick everything apart to see how I can “be” better for each person. Like putting on that oxygen mask first, I have the ability to then focus on what they need, instead of focusing on my betterment. All I can do is help and love as fully as I can when I do something. All thoughts should be about them. Otherwise it’s an oddly destructive thought process that is simultaneously narcissistic in focusing on what I can do better and yet still self-effacing or submissive. I learned to take being humble to an extreme that made it impossible to believe that I’m worthy of love or that I can ever do enough TO be worthy. And even when I’ve had some of the happiest moments in my life, I didn’t believe I had the right to be this happy. Somehow I tied having a disabling illness into it – deep down I believed I became sick because that’s what I deserve and all the difficult things are punishment for not being humble or productive enough. Ouch. That sucks as much as the Clonazepam withdrawals. That basis for thinking needs to be left behind as I work through the withdrawals. I want to come out of this in much better shape than when I started.

So there are some positive aspects to what I’m going through. I’m questioning almost everything now except for how I feel. I’ve learned that my own thoughts and feelings are often completely shoved below everyone else’s expressed, or perceived, expectations or beliefs, instead of allowing my own thoughts be the ruler to measure myself to. I can now get below those invasive thoughts and am sifting through the debris to find what I truly feel versus what is ingrained in me. I started the process a few years ago, but I was groomed to be a people pleaser and do all that I can in order to be “productive” and have a “positive impact”. I never could comprehend when someone said I have all ready had such a good impact on others that I need to quit worrying about it. It is ingrained in me to continually focus on what I can do for others and it built a very nasty trap for failure. I couldn’t truly believe that I’m “good” to anyone. Yet when I nearly passed out yesterday when trying to stand and Little Man started to fuss over me, I saw it. It took getting through another volley of symptom management, and some sleep, to clear my thinking and recognize what was at the edge of my thoughts. I saw that Little Man was nurturing me in the same way that I do him when he’s sick. It’s part of his love languages just like it is for me. And I’m worthy of this young man’s incredible love. And I’m worthy of his brother’s and father’s love as well. That self worth gets pretty skewed when you’re always focused on what you lack and need to improve in order to be “better”. It’s been hard for me to believe that I am worth the love and happiness my life has given me. I’m realistic enough to know that I’m going to struggle with this my whole life, but I finally truly heard and believed that I’m enough as I am, despite my limitations or “failures” when measured against someone else’s expectations. It must be hard to keep reassuring someone that you love them when they can’t believe that they’re worthy enough, though, so it’s this circle that can result in true loss unless there’s belief and trust in the feelings. If someone can love me, then I need to try my hardest to focus on the fact that they do, and not if I deserve it. It sounds like a simple concept, but it’s not. It’s the furthest thing from simple when your thoughts try to tear apart anything good to see what you should do better. I need to trust that I’m “enough” because I am loved and stop comparing myself to some ideal that I simply cannot be. I am loved. Not my capacity for possibly being better. Me. As I am. Flawed and disabled, and even when I feel like I’m on a water ride bouncing all over while really I’m just laying in bed during withdrawals. And during this incredibly difficult situation the love, concern, and care shown by others is such a gift. I know love. Where else do I have destructive behaviors and thoughts too? I feel like I always had trouble with those things, and having everything shaken up – the true possibility, yet again, of losing this life, has made me question everything except the things I know I truly feel and believe in. If an 11 YO can show me more compassion than I have shown myself most of my life, and especially through all of this, then I need to treat myself better. (Man does that pack a punch to reread. I’m trying to edit when I can since I know that right now I mess up words and don’t get things worded the way I want to. It’s hard to do when my hand and vision bounce all over, so I know I’ll have to come back after this is over. I’ll do my best for now between dictating and then some editing as I can.) If you have true insomnia the brain comes up with some twisted thoughts and can push you hard toward suicidal ideation or other forms of negative thoughts about giving up, so I’d strongly recommend if you are facing Clonazepam withdrawal, or any other anxiety disorder with insomnia, to please make sure you have unlimited access to professional help. You can get off the roller coaster and then night isn’t so endless. You can be helped if you find the right doctor/doctors. It isn’t as hopeless as it feels when it seems like the world is asleep and you suck so much you can’t even sleep like a “normal” person. The world wouldn’t be better, your loved ones wouldn’t have it easier, if you gave up. Get help please!

Last night I cried because I didn’t feel as if there would be anyone other than my little family that would even remember or miss me if I died due to the withdrawals. I knew the suicidal ideation, which the Clonazepam had quieted a lot, stemmed from a rough area deep inside, but I believed I was better, instead of realizing that the medication was masking it and I still needed to find the root of my deadly thoughts. I didn’t realize those urges were still in me deep down. I was supposed to be better because this medication was prescribed to do that. I didn’t know that it was going to be a lifelong treatment because the panic attacks and ideation would come back, since the core problem wasn’t figured out and worked on. The medication was supposed to only stop the anxiety and ideation, when it has actually damaged so much. But now we allll know. And in talking through that round of breaking down (because break downs have been happening rather regularly during withdrawals and I am overwhelmed), my husband said one of the most profound things to me. “I don’t want anyone to mourn me for long. I want them to be happy.” That made me admit for the first time, even to myself, let alone anyone else, that I didn’t believe or feel that I made enough of an impact to matter. I felt that it was pretty easy to just replace me, since someone as disabled and unproductive as me is very replaceable.

That’s why I felt that very few would ever miss me when I died. If I’m not worthy of love, then why should anyone ever mourn my passing? I want people to be happy, but I also never thought many would be overly upset about it. I can’t live up to some expectations and what I was taught I needed to be, so why should they care? Back we go for another spin on the roller coaster…I didn’t think I would be missed because I didn’t feel I was worthy of it. I hadn’t done or been “enough”. I’m starting to truly hear what I’ve been told and truly see how many people care. How many people feel I am worthy of their love. It’s hard to believe that when I was taught that feeling worthy is too prideful.

So in this relatively quiet time of thinking, while my vision makes the screen bob around and it takes hours to try to do something as straight forward as writing, I know that I want to continue to strive to have a good impact, but I have a long road ahead of me to recover from the withdrawals and to work on my belief system. The Clonazepam withdrawals have stripped me down to the core and it’s a scary place to be. I think and hope that I can do this, especially since we’ve made it this far all ready, and it truly is “we” that are going through this, because I’m not alone in this. I want to make sure that anyone else who might be on such a potentially dangerous medication, and manages to find this obscure blog when trying desperately to find honest accounts of going through this, doesn’t try to do this alone. You must have a “we” situation in order to survive. I wholeheartedly believe it. I honestly think it’s natural to consider suicide or to give in with all of these symptoms. It is nearly unbelievable that I’ve survived through even half of these symptoms and days, and each day is a true blessing, no matter what is happening with my body. There is hope. Without being part of “we” and having that support for not just the physical aspects, which are the ones that I don’t know are survivable without help, but also for the mental aspects, since the medication that masked the bad parts from yourself is gone. You need help with the deconstruction and rebuilding, because Clonazepam is usually prescribed when you don’t have the healthiest thoughts. In my opinion any prescriber should have to sign a contract with you before you ever touch one of those pills.

I think a Faith that has a loving and supportive base to it would be a massive help to someone in my situation. It might even be enough to help someone get through the mental aspects that swarmed in shortly after the medication started to leave my body, and has torn at the very base of my thinking, but I don’t have that right now so I’m clueless on it. And I truly believe that yet another epiphany-type situation like this was what I needed since I obviously didn’t deconstruct fully before. However, I do NOT believe that anyone should go through this. I believe that someone MUST have a support system in able to make it through any of the Clonazepam withdrawals. (Or really any kind of medication that your body becomes dependent upon and can cause such potentially deadly symptoms.) I wish I’d known before I had to start this withdrawal process that I shouldn’t, and didn’t, have to do this without some doctor being involved every step of the way. If I hadn’t gone through so much all ready, and am now passionately against taking a different medication that has the potential to cause a similar situation again, I’d check into a rehab center immediately, since I know I don’t have the medical support I should have. All a doctor can do now is treat my symptoms and try to help me not relapse, or treat the seizures the withdrawals have the potential to cause. For me it would be too dangerous to take another medication. The Clonazepam was discontinued at a cruddy dosage and I should have had that substitute as I started to taper off of the medication. At this point I could potentially develop an addiction to another medication if it stopped all of these symptoms. Honestly I don’t want to go through another hour of withdrawals, especially when I don’t know what will be the next symptom that hits me the hardest for a while and it’s so excruciating to experience. This isn’t a punishment inflicted on me because I haven’t done or been good enough though, as I had sadly felt deep down. This is a situation I should have never been put into, let alone left to go through with, believing we had no other options to help get me through this. Not one professional ever recommended going to a rehab when they learned about my being stranded without refills and facing withdrawals, and they never expressed why they wanted me off of the medication originally, instead of simply saying they don’t believe in using Benzos, so they won’t get involved with anything about it in my life. If one doctor or nurse had explained that it’s not just a policy or a disbelief, that this medication was being prescribed in a manner that could kill me if it wasn’t discontinued in the proper way, I would have gotten off of Clonazepam before it was so dangerous and difficult for me, and I would have had a doctor involved for the whole shebang. I’m so used to the medical field questioning the validity of Fibro that they won’t treat anything beyond what’s provable in labs. A doctor not believing a treatment is appropriate for an invisible disease is a new normal for me at this point. It’s hard to not be furious and go sue happy on some providers, because I feel that it goes against their oath to not express their concern for my health and make sure I understand the risks as they know them. It’s their job to make sure I am safe and my health isn’t being damaged by another’s treatment without my knowing it. I try to focus on the fact that it was my job as the patient to become informed about anything that is prescribed. I don’t often fully trust doctors, but unfortunately I did with this, and I feel that it should be malpractice against everyone from the prescriber who didn’t make sure I could safely discontinue Clonazepam, all the way up to the Primary Care who refused to even discuss why I was on it, let alone explain why they would not get involved, if I continued to take the medication after making sure that I knew the risks. And no Primary should ever make their patient go through withdrawals on their own – the doctor should make a plan with the patient in case the prescriber doesn’t take care of that PCP’s patient in the safest way. No PCP should ever leave their patient feeling stranded when it could be fatal. The shouldn’t flippantly advise to go to the ER because they disagree with something. It is what a patient-doctor consultation is for. Establishing care. They need to make sure their patient gets help no matter who the prescriber is, especially when I learn part way into withdrawals that it’s potentially fatal and impossible to do alone. Primary Care means they’re the one who will oversee what all the other providers are doing and make sure the patient is safe. They’re the primary care provider. I’m actually firing that doctor and trying to get in at a whole different medical facility once there is an opening. They can kiss my big toe before I’ll ever trust them again…

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Clonazepam Sucks, Part 1

Posted on June 29, 2022 by Georgia's Pampering

(This actually took a few days, so I broke the post up into parts.)

This post will probably take me all day to write, but I want to share my experience while things are really recent or currently occurring, in case anyone else that needs this might stumble across it. Thankfully I found some sources that helped ease my fears by providing symptom lists and titration, but it would have been nice to find something written about going through this. I found a lot of questions floating on the internet, looking for more information, and it hit me that there are way too many people going through this that followed their doctor’s recommendations in treatment (not referring to the ones that abused things).

I have a long history of anxiety, depression, and PTSD, and have seen a psychiatrist for years. They were a blessing and helped me through some of the most difficult times along with working through difficult things from my past. Unfortunately I didn’t do my part and thoroughly research a medication that was prescribed. I was told that I would be on Clonazepam (Klonopin) the rest of my life and I looked at it as on par with blood pressure medicine or my pain medication, so as long as I was being told to stay on it, that it was safe with my other medications, and it helped, then I needed to take it, because mental health should be just as important as your heart. Your mind controls your life – it’s one of the most important parts of making life meaningful, in my opinion. And so I took the 0.25 mg dose three times a day, with up to two “rescue” pills during an acute episode a few times per month. Although it’s recommended that Benzodiazepines only be used for short term, I was reassured repeatedly so I was on it for about eight years I think, but maybe longer.

My psychiatrist had retired and started working independently as a concierge psychiatrist, so I was able to continue treatment with her despite moving to another state, by using FaceTime and texting/emailing. Then one day I sent a text to her to request an appointment whenever she could fit me in and updated on what had occurred, so she would have that information for our next session, and I didn’t hear back from her. I waited and there was radio silence. I tried reaching her and then the pharmacy started trying to reach her for a new refill script before I ran out of medication. Nothing.

My PCP won’t touch anything related to benzos or opioids, so I had to get hold of the psychiatrist. I admit to being a nervous person who gets anxious if I don’t have a plan in place or things don’t go according to plan, so I try to always request refills with plenty of time to get their stock replenished or reach a physician. Plus I had the extra rescue pills that I hadn’t taken along with the night doses that I had recently stopped taking since another treatment works better at night. After two weeks I got alarmed and bells started clanging in my head. As a precaution I dropped my daily use to one, knowing I’d need to taper down in order to prevent serious withdrawal problems that are miserable, and unfortunately sometimes fatal. I had the hardest time finding consistent, trustworthy dosage tapering schedule information (it’s not as straight forward as just removing a pill; it requires a personalized treatment based on the patient), and I didn’t have a whole lot of options when I dropped down to the one dose daily in hopes that she was just unavailable for some reason, like due to having Covid. (Not that I wish that on anyone, but would be better than being in the obits like I ended up checking, in concern that she may have recently passed due to a health issue and the estate or whatever covering entity hadn’t started contacting her patients yet.) And then I ran out.

I had sent more requests to the pharmacy so they would continue trying to reach her, especially considering that they have more contact information for her than I do. A few days after I ran out the pharmacy contacted me to see if I could reach my doctor since they still weren’t able to and I told them that I hadn’t heard from her at all, I had run out of the medication, and now I was starting to have a rough time (at this point I was halfway through a round of heavy duty antibiotics for a sinus infection following some other bug, so I’d been feeling rough for a few months) with withdrawal symptoms (the ones I knew about that seemed obvious, like anxiety, amped up emotions, and that type of psych stuff) and a bunch of other things that I didn’t understand.

I’m grateful that the pharmacists at both Sam’s Clubs I’ve used have been awesome and this time was no different. The pharmacist was very empathetic, reassuring, and informative with a lot of tips for handling the rebound effects as my PTSD and panic attacks would continue to worsen the longer I went without the medication that controlled them. I all ready knew to do meditation, grounding techniques, distractions, and migraine preventative behaviors, but knowing which things I had learned to do would work for this was a help and helped me feel a little less anxious to have a plan of attack. But there wasn’t a thing she could do. There isn’t a medication that specifically helps with withdrawal symptoms, she couldn’t give me the lower dosages that I should have had that would allow me to titrate down further for longer, and she didn’t give me the resources and information I most needed.

DO NOT GO THROUGH THIS ALONE. I seldom ever use all caps and only do it when I truly feel something needs emphasized, so please know that I mean this wholeheartedly. You should have your doctor involved with every day of tapering you off of Clonazepam and handling the withdrawal symptoms. Honestly I want to say that you NEED to have them working with you every step of the way when you stop using Clonazepam. I learned that you can have withdrawals from just a few days of taking it, so across the board I think it should be required that they sign an intent form when prescribing stating that they, or whomever takes the practice over, will work with you extensively when you discontinue use. But you can do this if the medical system fails you. I didn’t know a fraction of what I learned in the past week, and I would massively recommend that you go to the ER or a rehab center/department. If you have access to that help, please utilize it. I cannot emphasize this enough. A doctor should be involved through your entire discontinuation and withdrawal. It is dangerous to go through this without medical help, especially if you don’t know what to expect and you don’t have time, or the doctor and medication, to taper off of Clonazepam. Withdrawal can be FATAL.

I wouldn’t be able to even try to write now, let alone do anything else or actually get through this, if it wasn’t for my husband. He literally saved me from dying. I know that sounds dramatic, but if you read anything else that I write, then you know that I try to be honest and straightforward when I write about things or else I don’t discuss it. Clonazepam doesn’t work like you most likely expect and it has some sneaky things it does. It binds to your receptors, think of them as the message center, and the way that it does almost always causes your brain to be lazy and relies on the medication to handle everything. When you take the Clonazepam away your body has to relearn how to properly function by itself. Especially if you have taken it long term or at high doses (if you’re at a high dose it is even more dangerous without a doctor working with you through the entire process, since you are at a higher risk for having potentially fatal seizures!). It’s NOT just helping you feel less depressed or suppressing the extra emotions and thoughts that bombard you. It literally affects almost every system of your body. Since it has its hooks in your brain, it is letting your brain grow dependent on it for everything. It takes over your message center and when it leaves, your brain has to relearn how to run all parts of the body. Guess what that means? You are bombarded with sensations, emotions, and thoughts. It truly feels like you are going insane. But what I didn’t expect, and no one had thought to mention, is how many physical things Clonazepam affects. Without Clonazepam in your system your body is overwhelmed with sensations, so you can have a huge variety of problems like migraines, muscle spasms and involuntary movements, coughing, massive dizziness, nausea, GI issues, shooting pains, unusual electrical shock-like feelings, along with the expected psych issues like depression, panic attacks that you don’t realize are happening when you’re in the grips of it, and altered reality issues like feeling disconnected from the world and time dragging out beyond 24 hours (especially with the insomnia that is common if you don’t have a doctor prescribing medication to help handle your symptoms and something that helps with sleep, since meditation and other cognitive things don’t help much in my experience), but don’t forget about those dangerous symptoms like seizures. At times I literally can’t walk, get food or medications, be exposed to light, or take care of personal needs. He has had to help me move in bed and nearly carry me to the bathroom, bring everything to me to the extent that he even got a dorm refrigerator for the bedroom so that I don’t try to get to the kitchen downstairs and get hurt or fall down the stairs to my death, help hold my limbs and relax areas when I have spasms that leave me crying, and finding anything my body will tolerate to eat, along with what feels like a million other things. The symptoms are often so intense and overwhelming that I sincerely think it would be impossible to survive this completely alone…

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I Am Still Here

Posted on February 5, 2022 by Georgia's Pampering

There’s been a little concern that I may have decided to stop blogging due to my change of life and especially with the decision that I will never be able to participate in my small business again. The truth of it is I have somehow managed to survive at least 4 rounds of Covid, a bout with Omicron that led to an infection that I’m currently fighting that is a big struggle, and an acute enough reaction to the vaccine that it’s contraindicated because it may be fatal to me if I get the booster. To top it off my scars from a failed iron infusion have become a new Fibro flare area and I have an incredible new PCP who is building me a medical team, but that is not only difficult to coordinate around my health but I have to recover every time I attend one due to all of the exposures at each facility. It’s been challenging.

I have been thoroughly blessed to have incredible moments with my family that make every struggle worth it. My eldest stepson turned 18 and is finding his life path as he prepares to graduate HS this year. As a family we were able to see a rodeo (their first) and another first for the boys, Monster Trucks (including Gravedigger driven by his daughter!). We will be going to a big demolition derby next month as well, which holds a special place in my heart, since my family used to participate in demo derbies and I had planned to be in a Powder Puff round during one of my remissions (but unfortunately relapsed before that could occur, not to mention the risk of causing new Fibro issues). We also have family game nights, friends who actually come to our home for the boys to hang out with (which never happened at the apartment, so a huge Grinchy Heart happy thought for me!), and we are even settling in the new home to the point that it’s starting to reflect our personalities into this perfect blend of family.

I often quietly work on gem art projects or do some gaming while recovering or distracting myself from pain (winter so sucks for Fibro, plus most didn’t keep those who need it for quality of life in mind when they locked down for “The Opioid Crisis”, so not well managed realistically). I hope when I finish this round of antibiotics and after I have the consultation with the Endocrinologist about my Hashimoto’s that I’ll get back into the groove, plus have some fun content for those subscribers who have remained during my absence. Please know that I appreciate your support and having someone to share my life journey with, even if we never meet. 🙂

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Once in a Lifetime

Posted on May 26, 2021 by Georgia's Pampering

Things have been downright crazy while preparing for the upcoming ceremony, and I had a moment this morning to sit and try to figure out how it could seem like there is so much more to this than my first wedding. And then it dawned on me. In just 3 days we will be hosting a once in a lifetime event, at least for almost all attending or watching. In America we don’t often see Celtic traditional ceremonies and activities. St. Patrick’s Day here is very different and definitely nothing akin to traditional. I’m not putting that down, so don’t get me wrong please. It’s kind of awesome that we put our own spin (or flavor, as Little Man says sometimes) to things. With our common ancestry and interests, having my dream celebration of a traditional Handfasting is nearly mind blowing. 😁 With this being so different than anything that is usually done around here, it’s a lot more complicated, and that’s before you consider the kids, transportation logistics, etc. *laugh* I mean, we literally practiced and wrote out detailed instructions of how to do the cord binding during the ceremony, to provide to the officiant. This may be a celebration and not a legal event, but we all know me…I’ve researched all that I can, pulled out the parts that work for us and adapted as needed, and have every last detail in a list (or 4, depending on which type of list – to do on specific days, responsibilities, foods, overall checklist, yeah…I know, I have a problem. Lol

Thank goodness for The Knot and their app. Although I had to tweak things to all get out because this isn’t a wedding, it has reminded me of so many details I might have forgotten and keeps me on track when I overlook one of my written lists, plus it has a running guest list along with tracking gifts and thank yous sent. (Dude, how handy is that, especially if you kind of suck at writing and mailing those usually?!)

Anyway, we finished up a lot of the big things that can be done ahead of time and it’s now a waiting game to be able to do specific things on specific days, like buying perishables, picking up items from the bakery, etc. While texting tips and discussing the binding with my mom and our officiant, it really sank in that we will never be a part of or see something like this again in our lifetimes. That’s kind of awesome, IMO. Cord binding during a Handfasting, personal vows spoken (or slaughtered, if the person knows Irish Gaelig *laugh* – trying super hard to say the words correctly though, I promise!), and then decor that is completely about us. Absolutely none of your usual decorations. There are Phantom of the Opera, The Nightmare Before Christmas, Grinch, Harry Potter, and the list goes on…along with framed printouts of traditional phrases and how to say them, details about Celtic traditions, and then the fact that our ancestors trace back to the same spot in Ireland (and a few others in Europe, although at different times). It’s truly become a celebration of us.

I think it’s really easy to get caught up in what is popular or “normal”, and put the guests’ possible opinions ahead of our own when planning things. I nearly fell down that rabbit hole, but that’s where our personalities help balance each other out. That and he chills me out when I get all detail psycho and worked up. *laugh* I’m thankful that we entered this part of our journey sideways, so to speak, which made sure that we will have a super unique and individualized event. Certain individuals are unable to attend and their absence is felt keenly, but I’m thankful that I get to share everything leading up to it and then highlights of the day, thanks to the latest technology. We live in a remarkable time that allows us to really embrace life’s journey and share it with those we love. (And now mask free!)

Anyway, I just felt a desire to share my awe with you. Life seems so ordinary, and downright difficult sometimes, that it’s so beautiful that we, and our guests and incredible helpers, will get to be a part of such a once in a lifetime event. All the way down to dancing The Wobble, which was requested, because I’m all ready a “weeble wobble” due to my illness, so I don’t plan to dance ever again to something that challenges that. *cracking up* The generosity of spirit shown, the understanding of trying to build a new home from two divided ones, and having such a strong support system develop through this has made it all the more amazing. And I must say, there is nothing as “oh, I got something in my eye” inducing as a ten year old saying they can’t wait for the ceremony that bonds you as a family, and that special shy smile when they hear that you made sure that the song that’s an inside joke for just the two of you will be played even though it doesn’t really fit as a dance-type of song. It’s been 9 months of “firsts” and I’m blessed that I get to be part of such a unique event that keeps those firsts coming, when I used to think that my disability was a death sentence. 😊 God bless the Celtic Knot of life’s journey. 😉

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Just an amusing meme

Posted on June 18, 2020 by Georgia's Pampering

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A Surprising and Huge Update

Posted on June 11, 2020 by Georgia's Pampering

I am gobsmacked. Straight up, holy Scooby Snacks, you name it, shocked! It turns out that everything that happened in March, which caused this “massive progression”, was completely different than originally thought.

Back in early March it was believed that I contracted H1N1 with a very nasty and acute sinus infection following, which triggered a huge progression in my Fibromyalgia. Nope!

My awesome doctor started me on Tamiflu as a preventative the day I was exposed to H1. Yet I still presented with difficult flu symptoms, so it got chalked up to my immune system laughing at attempting preventative care. Since the week on Tamiflu, as of June 9th I finished my last pill in my fourth course of heavy duty antibiotics and still have the same weird symptoms that are like a sinus infection mixed with something weird. It turns out that the Tamiflu worked. While at the hospital, just days before the announcement of Covid, I actually contracted it. The presentation of symptoms were of a medium case of Covid that didn’t require hospitalization (I know, I’m amazed by this too!). Following this was the start of what has been anecdotally called “post Covid syndrome”.

It threw my health into a bigger tailspin than anyone could figure out and made my Fibro absolutely unrecognizable after my getting to the point of knowing every warning sign of what was about to happen, from having it for so long. And without my realizing it my symptoms got so bad that I believed I had progressed so rapidly that I was actually dying.

My amazing concierge doctor noticed the change in me and immediately ordered Home Health, since I had absolutely no quality of life anymore and was on bedrest almost around the clock. I had so many falls that one went so bad that I fell and hit my disability handle and hurt myself pretty badly. I had a body and symptoms that I couldn’t recognize or identify.

Home Health (HH from here on out) stepped up FAST. Within just a couple days I had both my nurse and PT Evaluators here to establish symptoms, goals, and all that good stuff. During the PT Eval he looked at me and said that he’s treated Fibro for many years and this wasn’t the presentation of a Fibro progression that he’s ever seen. It sounded more like the after affects of Covid than H1 or Fibro. Say what?!

That night, once the Fibro brain fog lifted as it usually does if it’s nighttime, I went down the research rabbit hole. I went to all my trusted sites from when I worked in Neurology first. They led to this, which led to that, and then to several epidemiologists, and finally to one epidemiologist who also focuses on ME/CFS (Fibro’s official initials nowadays). He started a list of post Covid symptoms that general population has been reporting, plus the extremely weird symptoms and changes that ME patients have been reporting, along with their “recovery” stories. Their Fibro had undergone dramatic changes that made it unpredictable to them too. And I had almost, if not all (it’s daytime, so happy brain fog time), of the post Covid symptoms.

This explained why super heavy hitting antibiotics couldn’t kick my symptoms for the first time. It explained how I could suddenly get bouts of difficulty breathing and get the barking cough back, and it suddenly disappear as fast as it came on. The increased falls, even more acute fatigue, unpredictable new symptoms that were attributed to Fibro, pain that my usual pain regiment can’t even take the edge off of, and even the massive swing of depression despite having finally gotten stable with the right antidepressants. We threw the proverbial kitchen sink at this and I couldn’t get better, so of course I thought this was it. So I just waited for someone to accidentally expose me to Covid and finish it off. No one expected that I’d survive it.

I survived. I have Fibromyalgia with a laundry list of other Invisible Disease comorbidities and I had a case that didn’t even get diagnosed as Covid until I was in the negative testing phase. And everything I have been suffering since St. Patrick’s Day fits absolutely perfectly with this syndrome of after effects.

HH is still a Godsend and although tiring, has all ready improved my life (not just with this whole revelation), and I’ll continue to learn how to manage, but from a massively different perspective and now with hope. We actually have long-term goals again. We’re celebrating. We’re learning how to adapt, especially since I may not get back to my cruddy pre-March “normal”. And we have to be super careful that I don’t get exposed again, since there is absolutely no idea if I can be reinfected or develop something else from exposure. We don’t even know at what point I technically stopped being contagious, but thank goodness I was all ready under quarantine for H1N1!

But a sickly gal with Invisible Diseases is a survivor. I’m so damn thankful and proud of that. My body pulled through on its own for the very first time. And who knows, maybe having Fibro helped fight it? “This is my territory to terrorize, so back off!” I know, absurd, but it makes me smile to think of my Fibro smack talking a pandemic trying to take me down. *grin*

So to the other Spoonies, have hope. I know very well how that seems impossible, but I’m proof that we can do this. And I’m here if you need to talk, have questions, or want to see if maybe your weird new symptoms match. And guess what? The government is finally starting to notice us and see that they need to help us. This pandemic is expected to slam a lot of people with Fibro and other post-viral Invisible Diseases. That makes us an even bigger portion of the population and they have to see us after this. We CAN survive and they WILL have to research how to help us. I’ve always believed that with every bad thing there’s at least a tiny silver lining. This horrible situation will finally bring us hope. Suicide and progression aren’t all that we face anymore. HOPE.

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May 12th Fibromyalgia and CFS Awareness Day

Posted on May 12, 2020 by Georgia's Pampering

The Invisible Illness Awareness Day came this year while I’m having quite a struggle. If you feel inclined, please help spread awareness that there are invisible diseases that are barely understood and often disabling. The number one cause of death with most invisible diseases is suicide, because we seldom feel believed or understood, and we can become very broken when we lose the life that we knew.

In honor of spreading awareness, I’m going to be super vulnerable today and admit a few things. I am trying to accept that this is my new normal; although antibiotics got rid of the sinus infection, H1N1 combined with my Fibro to do a real number on my body. My level of illness has progressed again. In officially acknowledging this, I realize that I will have to make a decision on how to close out Georgia’s Pampering as a business. I’d like to keep the blog and hopefully still be able to provide useful information, but I’m no longer going to offer products that it is no longer healthy for me to try to make.

I’m also going to give in and get the forms done for my disability placard, so when I can manage to get out, I can do more by not being worn out from walking through a parking lot before I get there. I’m also going to use my standard wheelchair for when I leave the house, if it’s not a small outing that my cane can handle. I am now having too many falls and too much weakness to risk relying on my cane and hope. It’s silly, but those are two incredibly difficult decisions. Thankfully I all ready have a wheelchair from when I injured both ankles and feet, but unfortunately I can’t self propel myself for long without the fibro acting up in my arms, so we are looking into a motorized one. Unfortunately, because it’s for outdoor use and we do not have an accommodating house, the cost is out of pocket, so we are pursuing a few options of inquiry. Because we’ve made so many adjustments over the years to accommodate my indoor needs, if I want to have a little independence or enjoy time away from home, due to having a different kind of disabling illness, I don’t qualify for help. I guess I found another medical donut hole to fit into.

So, big changes are in my future as I stop being stupid and stubborn, and make some needed changes to accommodate the worsening of my symptoms. Maybe by being so brutally honest about what I’m giving up and dealing with at just 40, that’ll help someone else believe in these invisible illnesses, believe us when we say we’re sick, and maybe help someone understand a chronically ill friend just a bit better. I dream of a day when Awareness is just as vital as the MeToo campaign. Since it’s easier for a picture or pic with small message to get passed along, I’m going to share some down below. Please, please, please, feel free to share any and all, and help us raise Awareness for Invisible Diseases like Fibromyalgia/CFS.



And believe me, we try to hide behind smiles and “keep on truckin’”
Sadly, sometimes we’re too broken to start the cycle again. That’s why we strive to raise awareness, for our fellow Spoonies who just couldn’t fight through another day

And often it strikes young and middle-aged people, who have worked hard to live their best life and independence. They often feel like a drain on society, with low self esteem and sadness hidden behind masks while trying to not show how bad they feel.


Self help books and psychologists start a therapy course by changing how you think about your illness. It’s a challenge to make you stronger, adapt, and find other things in life that you are good at. Sure, that’s true, but stop telling us that we aren’t losing our lives. Acknowledge this and help teach us how to cope or heal from these losses! We are losing careers, relationships and friendships, hobbies, and basic abilities sometimes. Some of us lose the ability to feel safe outside of our home, because our immune systems are so bad that being around other people becomes literally risky. We lose the ability to enjoy date nights, feel good about ourselves, and sometimes we are paradoxically terrified of people seeing us at our worst…when we have extra cushions because just sitting hurts, we have braces or bandage wraps around joints, we smell like Bengay, we’re slowly dragging behind a walker, and sometimes we have to choose to use our energy on changing out of pajamas or spending a little while hanging out on the couch with our spouse. I’ve learned a lot of things during my journey and I lost a lot, too. So, no matter what therapy says, I’ll try to raise Awareness every May 12th that I make it to, and I’ll be honest that Fibromyalgia/CFS/Invisible Diseases all hurt from being so misunderstood.

Thank you for helping me spread Awareness and for being here during my journey. If you feel comfortable, please feel safe to share your journey in the comments. I’ll block any trolling. If you’re a Spoonie, you don’t have to keep your “I’m okay” mask on with me.

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