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Category Archives: Life as a Spoonie

Clonazepam Sucks Part 3

(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…

Clonazepam Sucks, Part 2

(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…

Clonazepam Sucks, Part 1

(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…

A Rough Patch

I didn’t want to write while depressed, so I’ve been mostly quiet for the past few months. It’s honestly been rough and scary this year, health wise, although there are glimpses of light thankfully, and I am blessing with an amazing support system.

Recently we had a cancer scare and I’m thankful to say that it came out negative. The biopsy caused extensive bleeding, which made my anemia worse and ended up with bedrest again with a slow recovery. The bleeding was unexpectedly more than the doctor was prepared for, although I commend her for trying to not look rattled or worried while working fast and calling out orders to prevent me from bleeding out on the table with a very different outcome than they typically see when performing one. I felt bad enough when I was dressing and saw the bio cleanup that would need to be done, that I wanted to leave a tip for the poor person that would have to clean what looked like the scene of a stabbing. *laugh* It was definitely a memorable event that is thankfully losing the terrifying edge to the memory.

I’m also struggling with long haul Covid (5th time and the stalker still hasn’t taken me down fully, so it’s about time my body learns to develop immunity and give it a restraining order lol), anemia (that is acute yet oddly doesn’t require hematology), rheumatologists refusing to take me on as a patient due to the complications of being a Spoonie and my meds, and some nasty little falls, among other details that I am frankly not up to discussing.

It turns out I have some internal abnormalities that were never noticed, which confirms some suspicions I’ve developed over the years of researching all aspects of my illnesses. However, on the opposite side of things, I now have an amazing Optometrist that prefers more unique cases like mine, and he has made my vision SO much better, plus has a plan of attack for watching, preventing, and treating any complications or worsening of my vision. My vision had decreased due to the wrong style of lenses and not because of my illnesses (mind blown that day), and it is awesome to get to game, read, do gem art, or just watch tv without getting a headache or squinting. (And I am throwing it out there that I think all optical practices need a digital scanner instead of manually dilating the eyes! We have digital, visual documentation of my optics that we can compare against for years to come, plus no horrible migraine or sun sensitivity from dilating! Seriously though, we need to campaign to make it mandatory. *laugh*)

On another positive note, I’ve been really utilizing a Christmas gift that I also bought for Young Mister K that I planned to write up in a new “favorite things” post, which may still happen, but it has been so helpful these past few months. It’s called the “Grievance Journal” from Boredwalk T-shirts. I picked them to try because it’s an awesome way to get your thoughts and feelings out without the kumbaya vibes of standard journal prompts. He’s definitely a more cheerful person, but since he’s so thoughtful and absorbs so much, I knew the empowered, encouraging, hype-filled type just wouldn’t fit him any more than it would fit me. If it’s a better day I may only write one sentence to one of the prompts. On other days I write a few sentences under a whole lot of prompts, which I just keep adding to, so it’s kind of an insight into my ups and downs when I read back through it. I also got a snarky spelling tee there, because snarky is always my first choice *laugh*, and I even love their fun emails (the podcast doesn’t play on what I use, so I can’t vouch about it, but love the snark and trivia to the emails). I am so impressed with them I became an “ambassador” for them. I have my own link for them HERE and even the coupon code of BOREDWALKWITHGEORGIA. I haven’t made any commissions at this point, but I love sharing about the Journal and their company, and will keep doing so even if I never receive commission. In case you take a look and find some perfect items for yourself or to gift, please use the 10% coupon code. Goodness knows we all need coupon codes these days! I thought I’d add a few pics of the Journal, since it’s a favorite for both of us and makes this post a bit more upbeat.

Look how nice of a book you can write all of your bad thoughts in and work through things. And no unicorns or “you can do this” slogans. *wink*
No need to hide your dark thoughts when you’re moody or feeling a bit evil. *grin*
I admit that I have extra pages tucked into this section. It turns out I hold too much in and also suck at timely comebacks. *laugh*

Anyway, I thought I’d share one way I’ve been coping with the stress and the scary days.

It was hard to miss a rugby game for the first time since they stopped limiting attendance due to the pandemic, because I was recovering from the biopsy that week.

My heart gets all Grinchy but also a bit sad to see the concerned look on Little Man’s face when he gets home to see me slowly come down the steps with my arm wrapped, or nursing some other injury, and he drops everything to dash up the stairs to try to help me any way that he can. I love the lectures he gives me for trying to do things myself that might get me hurt instead of waiting to have one of them do it for me, like bringing laundry downstairs (the latest culprit along with muscle weakness that caused a tumble on the stairs). I long for whatever bits of independence I can grasp, but those lectures are like gentle hugs that let me know that I’m loved and actually gets through to my brain even if I’m hurting. *smile*

I’ve also been struggling to set up the right medical team for this point in my life and have had to get a case worker to help even. United Healthcare has its drawbacks, but I am blessed to have their extra patient resources and look forward to finding some improvement with their help, now that we know the big C is back out of the picture. On Day 1 of calling to get a case worker I was provided with enough resources to actually have hope again that we can find some doctors that will be able to handle a Spoonie and some programs I can access at home for PT, meditation, stress management, and even tele health Psych (can’t vouch for that resource yet, since I’m still having a hard time giving up my awesome one from KS who retired but still works with me so far). As most Spoonies do, I’ve struggled with feeling like anyone cares about my medical stuff, despite the doctors literally being paid to listen and try to help, so it has been a bit mind blowing to talk with the patient resource team and have them demonstrate such empathy. They are the encouraging alternative side to the Grievance Journal, working together along with my family to get me through each day.

I may have also developed an addiction to Sims 4 and associated packs to keep myself occupied when I have insomnia and distracted if it’s a bad pain day, especially with so much bedrest for the past few months. I have so much to blog over on my gaming blog. *laugh* Vampire matriarch and patriarch of the family of 6, with the youngest being an oops after turning the parents into immortal vamps, who currently have some of each generation living on their English farm. *grin* Oh, and the heads just got a vacation home in a coastal, beach world, and are now learning to become spell casters as well. SMH. Although I play with the lower generations, I can’t seem to let the heads of the family live autonomously. *grin* And it may have gotten crazy enough with deaths, births, etc, that I created a family tree to keep track, even. *laugh* It’s a great distraction that allows for limited exertion and not disturbing others while they sleep.

To those who are reading this who have reached out and sent me best wishes, kept me updated on their lives (thank you so much for your patience and understanding Derek, especially!), or checked up on me, I sincerely appreciate all that you have done, even if my being introverted throughout all of this has meant that I’ve rarely reached out. Please know that I truly appreciate all of you and all that you do, and even the fact that you care enough to check the journey this Spoonie is on. Hopefully once my iron has gotten a little bit higher again, and no new things hit me out of left field, I’ll be back to writing more often and with more cheerful or helpful posts. (Although expect a few tips for how to be a new stepmom navigating a senior graduating and preparing for college. Goodness knows I feel so unprepared and hope I’ll learn some valuable things to help others. *smile*)

In the meantime I have my little guard cat snuggled against me in bed, the big cat is snuggling my legs at the moment since his adored K isn’t home right now for Zane to try and love on or play with, and one of my newest treatments is about to make me randomly pass out for a while (great when it’s during the night, but can be annoying when I want to do things during normal human hours *laugh*). Healthier wishes and hearty appreciation to those of you reading!

(P.S. If you like bluegrass or a country story kind of vibe, check out the song “Whoa Mama” by Steve Martin [yep, that one], from the musical he helped write and compose, “Bright Star”. Although it’s not on stage anymore, you can watch some school performances on YouTube for the storyline and then check out the Bright Star Concert on YT to hear the professionals sing it. It is the song that is upbeat and fun enough to help motivate me to dress and get ready for doctor appointments, and is just plain fun to me, especially with the voices the two professional leads have. I’m lucky Joe likes musicals, since this currently plays more than Phantom or Nightmare, ATM. *grin* I never heard much about it until I stumbled across some clips as it was being canceled, and he found the concert and soundtrack for me, so I hope you enjoy this unexpectedly delightful song.)

Chaos and Love

That’s pretty much the theme of life and love, isn’t it? You can’t enjoy those beautiful, significant moments without the whirlwind of chaos, just like poor air quality creates the most beautiful sunsets.

I get lost in that whirlwind sometimes, especially as a Spoonie, which I am not using as an excuse, but as an explanation. I quite simply can’t do everything for myself like I used to, or even kept trying to do for years, and rely on my little family to see the beautiful things going on around me when I’ve been stuck in an illness spiral. And the eye of this storm is so wonderful, exciting, and bittersweet. The senior got scouted and is headed to college in August!

I knew that becoming a stepmother would be one of the most miraculous events and journeys of my life, but had no concept of how much I could all ready love these guys, or that I’d actually feel the horrible “empty nest” syndrome I’ve heard others talk about. We’ve spent a lot of hours talking and trying to help K find his next path, and with a scholarship and starting a new Rugby team, he will be headed off to OK in weeks. I’m not overly sporty or outdoorsy, so it’s been an adventure to support a stepson who is, and I won’t miss the sunburns or lack of restrooms on Saturdays. *grin* Man will I miss him though. Even with the coparenting meaning he only lives with us every other week, it’s like this darkness is waiting on the horizon when we will only get to see him for big events and trips. I am so incredibly proud of the character he has developed and shown, of how much he has pushed himself to get past the hurdles the pandemic created with his education, and how thoughtfully he approached his options. (All right, almost drove us bonkers with the decision being so close to graduation, but he made sure it was the right fit for the path he wants to travel next, so I couldn’t be more proud that he waited to know for sure. *smile*)

While he’s a typical young man, he’s also incredibly insightful, observant, and driven. No matter how I feel that day, if he comes in to chat with me (wild, right?! *grin* What a gift! A teenager/then young man who wants to spend time chatting with his stepmother!), I always feel so blessed to have that experience. He’s helped me learn a lot about myself and see my life experiences differently, I’ve seemed to help give him an outlet to discuss his goals and thoughts, and with the signature toss of his hair and a smirking smile, I suddenly have more emotional strength to get through whatever I’m struggling with.

I figured with joining his life at the end of his teenage years he wouldn’t have much to do with me and had low expectations honestly. The blessings are all the sweeter for being so unexpected. I know there’s a big distinction for him of me being his stepmother or his dad’s wife, and knew I’d never step into an actual parenting role with him, but he actually let me in. He waited and observed, and when he realized that I wanted to do my best for them and his dad, he let us create our own little family with him, instead of my staying on the outside due to the past having too much of a hold still. And I made sure to document as many happy moments in our lives for him; before and with me in it.

I’ve been working on one of his graduation gifts for some time now, although primarily gathering things until now. For his 18th birthday I gave him the first scrapbook I made of his childhood. I pestered his family for pictures and dates things took place, so I could document in chronological order, and told him that he’s receive the rest after graduation. Little did any of us know that this would result in 5 more binder scrapbooks! *laugh* The second part of his childhood is done and in the second binder. Then from the time I started dating their father through current, I have 2 scrapbooks per year. SMH *laughing* It’s been my mission to make sure he had these albums to remind him of his journey, of those that love him, and of his adventures. Not the typical gift for a young man, but the most meaningful I could think of. So. Many. Pictures. *grin* I am a bit embarrassed that our Thanksgiving trip fills almost an entire binder itself, between pictures of the exhibits, of the events we went to, and candid moments. I knew it would be the last time we had a family trip with this family dynamic though and wanted to capture all that I could.

The jellyfish tubes at the Branson aquarium.
Exploring the little cabin church where their dad proposed the year before…
He was the only one able to climb to the top of the climbing fronds at the exhibit and this immediately became one of my favorite pictures.
A little Rainforest putt putt with a dash of country to the city boy’s wardrobe *grin*
He went on the gyroscope, or whatever it is, with me at the science center. I got to feel normal and have fun without worrying about injury, and he shared that experience with me instead of my being reluctant to go with all strangers and maybe missing out. I may get a little teary eyed over these pictures. *smile*
There’s that K-signature smirking smile *grin*
And this is the perfect example of the team captain who got scouted with a friend to start the university’s Rugby team. Such pride and awe for his dedication, leadership, and character.

I don’t often share a lot about the guys since I’m careful with their privacy, since someday they may not like that their stepmom blogged about them to the public, but my cup runneth over and I want to share this incredible joy. It’s been a rough time to be a Spoonie, these past few months, but this is my happy moment for this month. It may be bittersweet to miss out on more of this time together, yet I don’t think I could be more proud if he was biologically mine.

I never knew that being a stepmom could be so beautiful or help teach me to look for moments to focus on outside of the sick side of my life. I also never knew I could love two young men so very much, especially when I’m used to a sedate world and they are a sometimes overwhelming whirlwind of chaos, joy, exasperation, shenanigans, and those first-time experiences of growing up. I know I’ll look like Rudolph from crying when we leave him at the university this summer, but this is truly one of the happiest moments I’ve ever been blessed to be part of. And it gives this Spoonie more courage to face the sometimes endless nights and scary doctor visits. Spoonies deserve happy chaos and this Spoonie can’t wait to see what amazing paths this young man takes in his journey into adulthood. *happy sigh* Let’s not think ahead to what it’ll be like when J nears the end of his next 7 years. Holy Scooby Snacks will I be even more of a basket case then! *laugh* In the meantime, SNU is lucky to be getting one of my favorite people. *smile*

I Am Still Here

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. 🙂

Spoonie Life Update

I’ve avoided writing much about my health struggles for a bit now. I figured with everything going on in the world, Covid, and all, that writing and scheduling the favorite things posts was ideal post my iron infusion, but it feels like forever since I wrote a vulnerable, real life, post, so here goes.

When I went to the hospital for my third round of Covid it was discovered that I had anemia. Subsequent lab work revealed that it had become acute. Hence the iron infusion I received at the start of this month and will probably have another in about 4-5 weeks (after we check the 6 week labs) to measure improvement. It was seriously rocky at first, although the infusion by my concierge doctor was absolutely the best procedure I could have ever hoped for; much less invasive and traumatic than a previous infusion I received that put me into shock I now know, and literally thousands cheaper, plus in the comfort of a room chatting with my doctor with him by my side. Truly best case scenario ever. I seriously wanted to lay down afterward, so we started the long trip home and then I started reacting. Dude. Funky. That’s probably the best description of how I felt for the ride home, beyond on the brink of tossing cookies. Sick on bedrest for a few days and then I had about 1.5 decent days. I mean truly decent days and even got to hang out with my mom along with both boys.

I had a rough night that second decent day and figured I’d overdone things despite taking some breaks, so did some bedrest and took it easy. I just kept getting worse though. It’s been weeks and some days our apartment feels like it’s a mile walk to just get a drink from the kitchen, let alone get something done. I really wanted to spend a lot of quality time with the boys on the last week before school started, but managed what I could, which I’m still thankful for even if it wasn’t what I hoped for.

After some consulting with my doctor and going through the list of symptom and body changes, yeah, I had Covid for a fourth time and am in “long Covid” now. 🤦🏻‍♀️ Seriously, world?! The first was supposed to kill me, yet I survived, so we’re just going to keep throwing it at me to see how strong Darwinism is?? And this is with both vaccine doses. And also means that part of my feeling poorly before my infusion was when I actually had Covid and chalked it up to the anemia and other illnesses. I honestly got kind of mad when I learned it was Covid screwing with my body again, since I’ve gone through so much all ready and not only got it again post vaccine but also got sick from the vaccine too, enough so I have to talk with the CDC becomes I opted to do self reporting post vaccine (it sucks, but if you have a preexisting condition, I ask you to consider doing it, because it’s the only way they’re really going to learn what this does to all of our illnesses, especially us Spoonies). At least we know why I’m not bouncing back more, as I should be by now, I suppose.

Witt everything else my new diagnosis of Hashimoto’s Disease hasn’t had treatment started yet either, so yay. 🙄 Basically my thyroid isn’t working correctly, hasn’t been for some time actually, and I have very poor metabolism, my body is attacking my own skin and causing it to scale off (yeah, turns out that’s NOT seborrheic dermatitis as originally diagnosed and why treatment for it and psoriasis burned my skin). My body is literally waging war with itself while bloating up, although some has improved either due to the Covid or the infusion, since my fingers are oddly thinner some days.

So two new issues to treat that increase fatigue and pain, which are the most notable symptoms of Fibromyalgia and CFS. Go me! Also will start a sleep medication soon so I can reset my rhythm to be more normal, since I want to still be a day sleeper, when my symptoms aren’t making me narcoleptic or playing Sleeping Beauty for 17 hours. Meh. The oral liquid iron I will also take to help with the anemia between infusions (and hopefully instead of) is so foul it has to be taken as a shot with some OJ. Did I mention that due to one of these conditions my stomach isn’t so keen on food or most drinks? Makes the iron extra appealing and I need to buy stock in the company that makes Emetrol. Lol

I play The Sims a lot honestly, since the distraction massively helps, and I’m working on retooling my SL storyline and gameplay. Plus starting a new Diamond drill art project. When I have energy I try to catch up on the chores a bit, do things as a family or with each boy as applicable, and pack. Yep, pack, because we are working on buying a house! His legal stuff is in the waiting period and will finish just in time to be my birthday gift. *grin* Shortly after my birthday, if the courthouse is open, we will finally be able to legalize our bond. I will then officially get the initials of our fav YT show, GMM, as the youngest frequently reminds me. *grin* How much more of a Mythical Beast can I be if I even get the initials of their show? *laugh* With all of that means we are officially able to start trying for a house now. We met with our realtor tonight and although we’re coming up to the slower time in the market, we have hopes, and there’s even a chance that we can outbid on a place we like nearby that’s active under contract right now (crossed fingers, toes, whatever would be greatly appreciated *grin*). If we actually can, then we should be able to move before the snow starts. Otherwise, it’ll probably be after the start of the year, unless something pops up and isn’t snatched immediately like two others that pended the same day before we could even have the realtor talk to them. When they say the buying market is tough right now, it’s true. I can vouch for it. Lol However, there are a plenty of things not needed until we move to the new house or craft projects that can be put off until there, not to mention clothing going out of season or not fitting, so plenty to safely pack and put in storage for now. (And I have a tracking system in a list app where I document what’s in each box and coordinate a code for the box itself and in the app. So easy peasy to get from storage if necessary. If I haven’t mentioned the app AnyList, it’s one of my ultimate favs of anything. I happily pay for the full version because it’s that awesome, and I want every feature possible, which is not normal for me.)

Just like the show’s theme song I used to watch in my youth, “you take the good, you take the bad”. It feels like a storm of medical mess and being literally uncomfortable in my own skin sometimes, but we are actually moving from what feels like the Prologue of our story to actually starting it. *big smile* We’ve been bonded for months now, but making it official gives just an extra bit of pep, and then the boys will fully feel comfortable saying “that’s my stepmom”. *cheesing* It still feels like a dream some days that I get to be a part of the lives of these incredibly unique and awesome young guys. And the honor of them sharing their thoughts and feelings with me is beyond words. Despite my back nearly arching from pain I can’t help but smile, knowing I’ll get to officially call them my stepsons without anyone correcting me with an “almost” or “kind of”. We’re officially learning to adjust to being our own family and household, developing chores and responsibilities, with growing pains, hurt feelings, tears of sadness and joy, and all the special moments in between that some take for granted, but we’re becoming a family. I’ll try to handle all the medical stuff that’s thrown my way as gracefully as possible because I have some very important reasons to fight for the best quality of life I can manage. *soft smile*

I hope this wasn’t too overwhelming or down of a post, but it feels like you’re on the Spoonie journey with me and I wanted to share the immense changes I’ve been going through. My sincerest, best wishes for every reader’s health and happiness! Please stay safe in this ever-changing life climate. Blessed be.

Tips for Covid on my Third Round

Of course this is just a silly blog entry, so talk to your doctor if you suspect you have Covid, you have Covid and need assistance, and all that good, legal stuff. I don’t assume responsibility or any of that stuff. By reading I hope you might learn something interesting, smile several times, and have a good day.

With that out of the way, now that I’m able to sit up in bed this morning and am actually awake during “normal” hours, I thought blogging is the number one course of action, of course. 😉 First up, don’t expect it to be easier or the same as previous cases of Covid you survived. I’ll wait here while you facepalm yourself. You survived the big and bad before, so of course you’re stronger this time and it’s just going to knock you a few pegs. Nope. You ~might~ get lucky enough to have a light case if you get Covid more than once, but plan on feeling like you’re knocking at Death’s door.

Second, unless your shortness of breath is height of the Pandemic kind of bad, expect to be pretty invisible at the hospital. Pack a go bag. Include a drink, extra layer of clothing in case you’re cold, phone charger, and throat drops. Other than procedures, my nurse checked on me absolutely no times. And they put my bag on the other side of the bed with the rail up, I didn’t have my cane and was too weak to walk around, and they hid the pillow and bedding. I had the loosely fitted sheet to the bed and the gown they gave me for my X-ray, plus those extra clothes that I still had before they moved my stuff. Staff did tag team care on me with long intervals of nothing but time to myself. It hurt to breathe, but the X-ray was good, so don’t expect a breathing treatment, pain relief, or such until near discharge. Just keep your mask on and behave. Bonus points if you’re not disabled and can get around the bed to get your things.

If you’re a Spoonie, prepare for the dreaded Fibro eye roll when giving your list. Yeah, still in this day of age and with so many “long haulers”, which got added to my diagnosis list too. Feel like your skin is being filleted off because it hurts when you cough? Med seeker. Your usual pain meds aren’t touching this feeling like your chest has been torn apart? Aren’t you used to chronic pain?

They literally want to handle your financial info on the phone, with masks on, on other sides of the glass door, and expect things to go smoothly. If the Sam’s Club door greeter can’t understand me with a mask on, I don’t think this little concept is going to be beneficial to either party. And if I’m told “I don’t understand you” one more time, you can bet your bottom dollar I’ll find a way to the door, open it, and lick you. Forget droplet protocol. Do you have “she just full on licked me like a psycho with a billion Covid positive germs” protocol? *grin*

Sure, you’re miserable, but this is a special time to spend by yourself contemplating how miserable you are. No masked up company. Even if your SO was positive and is being treated, you get this time to to yourself to reflect on that delightful feeling of your skin peeling off, your lungs being squeezed in a vise, and seriously debating what could they really do if you pull back the drape to announce to the nursing station that you’re checking yourself out because after five hours you may die of thirst with all of this coughing.

And if you’re a Spoonie, do NOT stop your regular treatment protocol without also talking to your doctor and pharmacist, and obtaining precise instructions. Thank goodness my SO’s best friend is a pharmacist! My pharmacy left it clear as mud, there are few trustworthy sites to cross reference once you get deep into treatments like we need, and that mixed up time of treatment was pretty close to worse than when I went to the hospital than before. Honestly. I’m truly hard pressed to decide which was worse. I still feel like I’ve been getting mule-kicked in my lower back, but it’s bearable now.

You may have escaped without losing taste or smell other times, but don’t brag. It’ll come back and bite you. Then you’re left with them prescribing something to help you eat because all food tastes horrific and it just doesn’t sink through your mind that you need the nourishment even if cat food might be less offensive smelling to you. I felt like I couldn’t brush my teeth and tongue enough, even though it triggered coughing spells. Thankfully you may get some flavors back and it might not take a really long time (cue the “Hallelujah”).

If you’re a Spoonie with Costo, check remaining self esteem and self consciousness at the door for the remainder of the breathing issues. I seriously discovered the most relief when I had a coughing jag was for him to hold me around my ribs while I coughed, wheezed, and hacked away. If you can handle it, get one or two shots of inhaler. That went out the window for me unfortunately. We found that a cough drop, coughing, being held, and try to softly sing was the best combo for mine. Seriously. Jacked up, I know, but nursery rhymes, favorite songs, whatever. I suspect some was mentally soothing and gave me something to focus on beyond the fear of not breathing. I think there is some merit to the belief that it helps get some rhythmic, light breathing working through lungs. Any which way, “She’ll be coming around the mountain”, “Ring of Fire”, and “Upon a Dream” had the best cycles for getting me through episodes. Vaporizer, humidifier, wet cloth, crawling instead of walking, PrimaMist, Albuterol, cold meds, bandaging down my chest and ribs…try the combo if you find yourself in need. Don’t know how we landed on it, but game changer.

You will become “The Princess and the Pea”. Your comfy haven of snuggles will become a torture device. You will suddenly develop rocks in your hips and bum. It hurts no matter what way you lay, especially after two weeks of laying up at an angle with most weight in weird spots. Sitting on a doubled over blanket may help for awhile. Don’t sleep on it unless you want it to also need dried because you cried on it in your sleep from the pain in your hips. I lost weight a rapid and horrible way, but smuggled in small boulders for a tush instead, and the first outing to the living room to sit on a couch while being around others (“A Whole New World” totally played in my mind as I made my way down the hall” helped, but a memory cushion topper arrives today in hopes that it helps with these last few weeks.

Follow the white rabbit. Drink the bottle of potion. Let the pretty lights overtake you. You deserve something interesting from this hell hole of illness, so if you’re having feverish hallucinations, enjoy them. *laugh* I couldn’t tell you much about most of mine, but lots of bright lights, a super mellow vibe, and the least amount of worries I’ve ever experienced made those difficult days more bearable. It might say a lot about me to my psychiatrist that I’d recommend the hallucinations, but I don’t care, I’ll sign a petition that it should be a legitimate part of Covid care. *grin*

Try to have a lot to look forward to as you start swimming up out of the swamp of Covid symptoms. It’s still scary and you worry every time you try to slowly walk to the restroom by yourself or look at the scar where the nurse blew your vein open during your hospital (stay? Time killer? Irritation to them? Pick what works for you lol). I have a super protective ESA cat, ceremony invites to be addressed and mailed out, my gaming blog (in my second pixelated month!), binge watched most of the shows I’ve been curious about, and had a list of details for the ceremony to make decisions about. It’s amazing how little truly matters when you’re planning an event and then get struck by Covid. The decorative stuff that had been in my head all went away and it came down to how to make what’s really important happen, and then let’s celebrate. Formal engagement pictures, a lit arbor, setting the scene a certain way…meh. What matters is that those who care are there to witness us “tie the knot”, we will have fun taking pictures and enjoying relationships, and we will celebrate life and love.

Finally, cheer! Punch the air! Watch Mamma Mia and put fake nails on so you feel super feminine. (Or whatever the equivalent is – listen to power tools and play Top Gear – I’m not going to pigeon hole or judge *grin* Just float your boat!) You have some weird “one up” items when talking to others who have been sick, you discovered who and what really matters to you, you learned that true love can survive unwashed hair and unshaved legs along with the weirdest noises your body can produce, and hopefully you’ve learned to be nicer to yourself. Maybe you learned that a ten year old being excited that you’re well enough to come sit on the couch and snuggle is one of the best feelings you’ve ever felt. Maybe you learned that your love language, especially when life is boiled down to being sick, is that you can order and provide the flavors of jello that the teenager wants, and it fulfills part of that “not your mom, but I will always try to help” feeling you have. And maybe you wake one while your SO is asleep, notice how their eyelashes rest so gently on their cheeks, how peaceful they look, and are thankful that the shit show you just survived isn’t colored by how messy the room is, how you haven’t vacuumed, or aren’t Superwoman. (Of course you now really want to take care of that disaster that’s built up, but be nice and take your time…) People love you because you make their life special. The whole illness sucks, but I hope you remember that important lesson. You may feel like you French-kissed a light socket, but they love how quirky and unpredictable you are. They love that you care about others more than yourself or that you want them in your lifeboat. Whatever. Covid sucks, but you don’t always get reminders that you’re worth being loved.

Round 3

Covid came to visit again and unlike round two, it really kicked my hiney. I suspect it’s because of a stronger exposure, since it made its way through our little family, but with so much unknown about the ability to contract this multiple times, who knows.

Although my KS doctors are still working with the vaccine roll out, MO isn’t, so when I have an online appointment with my fibro doctor on the 1st I’m hoping his staff can get me scheduled for the shot up here at St. Luke’s. It seems like I’m recovering, which is when my doctors most worry that I’m most likely to have a sudden, severe decline that requires hospitalization. Being the practical person that I am, I appreciate the honesty. Being scared that with my problems if I get hospitalized for anything I’m not coming back out…well, I kind of like the voice in my mind that fibs and says we’re getting through this just fine. Lol

The great part is during this I am literally in a fight with KS Medicare about them still believing I’m disabled and wanting an evaluation done in person in Topeka in a couple of weeks. I’ve talked to national, KS, and an assistant to the case worker for my KS DDS. All said it’d be cancelled and to wait for MO to contact me, since they’ll probably want to do their own investigation beyond the huge “paperwork reduction act” packet I filled out months back. On the 18th, two solid weeks later, I received a second notice of a new evaluation scheduled at the same place in Topeka. 🤦🏻‍♀️ One, if the paperwork has said “no expectation for significant improvement and will never work again” for over a decade, I think the government is wasting money on paying some doctor to evaluate me, then a committee to review, etc. Not to mention the cost behind all this paperwork! Two, KS hasn’t been paying for my disability for 6 months. A little late to be deciding if you’ll continue to pay me, IMO. Lol Politicians get gold toilet seats and the government pays people to harass permanently disabled people. I don’t usually get very political, but dude, why do we have room in the budget for this?! And a bit ironic to me that MO hasn’t had a problem other than when they would move my monthly payment to a different bank than I used for years. As the youngest would say…”Kind of sus to me.” Lol

So between Covid, planning the Handfasting (under 70 days!), court, and settling into our family rhythm, I know I’ve been quiet and wanted to post a bit of a heads up. However, I’ll end with a few cooler things though than the blah. 😁 One, the eldest got Captain of the Rugby Team! Sadly he only got to play once before we all crashed with the bug, but in a few weeks, we’re back to Saturday matches of young men beating the holy tarnation out of each other. 😂 Two, which was worrisome at the time but funny now, my fever got warm enough while sick that my Shamrock and glitter decorated fake nails began dropping off because I warmed the glue with my fever! We still haven’t found one rogue nail, which is disturbing lol, but they started popping like popcorn, even into the cat food when I scooped a bowl! 🤣 Lastly, although we’re having to make some modifications due to Covid cutting events out of our time frame, the Handfasting plans are coming along nicely. I think, in a way, the adaptations that are coming about are even better. It’s definitely not the original three mental images that we had, but it’s more cohesive and “us”. We had to cancel our engagement photo shoot and have had some issues with my dress, but being sick, and honestly a bit scared about it causing complications, has really helped to hone in on the things that really matter to us. And that’s how I want to close this little catch up post.

Life is hectic and the world feels like it’s in turmoil. Just don’t forget to take stock of the things that really matter to you. Celebrate any milestone you can, hug a loved one if you can and hold on long enough that it becomes a memory seared into your heart. Rejoice in having family/friend game night again and cherish the laughter. No matter how crazy it is and how much you’re struggling right now, you are loved. As someone who has fought suicidal ideation a lot before, I know it may be hard for some to believe and trust in it, but you are loved. And if you’re lucky enough to be in love, learn their love languages and wrap yourself in those beautiful moments to help during the bumpy moments. Don’t forget to pamper yourself in whatever way that suits you, either! A bubble bath, 5 minutes on the back deck without kids, crafting, or even gaming. You’ve had a rough year. Show yourself some love. 😊

Just an amusing meme

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