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She Never Came Back Home

When I wrote my last post, in those first few days home, I omitted something that I was struggling with. The day after I came home my mom was admitted to the hospital. I worked on my rehab, checked in with her nursing staff and doctors as my body/mind allowed, but she never came back home.

I am pretty open and vulnerable on my blog, from all the mistakes and lessons learned while working on my little business all the way to discussing my health and personal issues. I try to respect the privacy of everyone else involved in my life though, because someday they might not want details of their life forever floating in the internet world. I’m going to respect my mom’s privacy as much as possible while discussing my experience, being grief is the survivor’s journey.

A strong case of Covid attacked my mom’s disease-weakened lungs and her doctor notified me that they had exhausted all noninvasive measures. So my husband rushed me to the hospital as soon as he got home from work that Friday evening; hauling along my walker, the Medical Directive, and a few other things that I thought would be of comfort to her if she had moments of clarity.

Upon discussion with the staff and reviewing my mom’s wishes, I had to make the decision to remove all assistive devices and start comfort care instead. She had been so delirious that she had repeatedly removed the breathing mask and then nasal tube, so they had put special gloves over her hands. They began to administer pain and sedation medications, to make her comfortable, and not have the instinctual behaviors to fight to breathe.

We had to don full Covid hospital gear, from the tear away gown down to a shield over the N95 mask. Extensive and sadder in a way, because there’s no skin to skin contact when holding their hand or stroking their hair. No hugging or kissing their forehead. But you get to be there and still touch and talk to them at least.

I put some pictures around in her bed, wrapped the nice cross necklace around her palm once they removed the glove over her IV hand, after removing the oxygen, and talked to her. Even the Young Man was home briefly before he left to start college and he was able to come for a bit, to say his goodbye. It was agreed that it would be best for Little Man to not witness this; I didn’t want his memories of her to be overwritten by such trauma. But my husband stayed with me there for hours.

I honestly thought it would have been more peaceful and quicker, once comfort care was started. I don’t know the medical parts that caused everything (since that’s not an area covered in education for any of my former medical careers), but the moans and horrific breathing noises haunt me. I did all those little things you do when you comfort someone you love; held her hand, stroked her hair and cheek, even held her head in a position that made it easier to breathe when pillows couldn’t do it and her muscles were losing control. Played favorite songs, reminisced about favorite moments we shared or silly things, kept repeating how well she was doing and how proud I was, talked about the things she would soon encounter due to her beliefs, and all the updates that would reassure her that we were doing well in life and it was okay to let go now to be in peace.

I became incredibly sick from overdoing it, the stress, and all of the crying, and spent quite a long time vomiting and resting in another room; enough that I suspect I almost got admitted with being so sick so soon after discharge. The nurses kept watching me whenever I took trips from the waiting room (it was empty most of the time, so I actually passed out for a bit curled up in a recliner once my stomach settled). My incredible husband had me take care of my own health needs and stayed with her instead. I don’t know too many people who have so much character that they knew to fulfill both needs, because later his being there for her when I couldn’t sure soothes me. All the things he did for her, and facing such a situation, knowing I needed him to be with her while my body shut down.

After several hours the main night nurse suggested we go home and rest, because it was going to take some time apparently for the system to shut down fully. She would call when the situation worsened, but we needed to take care of our needs at that point. The guilt is sometimes so pressing; having to leave because my body couldn’t continue when my mom needed me. Several people with varying medical knowledge all have tried to reassure me that at that point there was no recognition and, to be blunt, she didn’t have any knowledge that we were gone, but grief and guilt aren’t logical. So sometimes I struggle.

I fell asleep with my phone near my head and answered on the first ring; instantly awake. The nurse said it was time to come and we hurriedly went to the hospital. I don’t even remember what I wore, but remember thinking afterward that it was an odd shirt to wear to someone dying. Why in the world is that something I remember? And how is clothing more or less appropriate as long as it’s not sarcastic about death or bad luck? One of those weird things that pops into my head randomly. Point is, we didn’t take time to actually select clothing; just grabbed and tried to put everything on at once. I remember my husband worrying that I was trying to walk too fast with my walker, when I was basically relearning to walk without the complications from the withdrawal and due to the weakness, but I was so focused that I actually even remembered the path to the Covid area, when I’m notorious for getting lost even in an Olive Garden restaurant (don’t get me started on my map skills either…yikes). The nurse called when we were a couple of minutes from reaching the unit and met us outside that area. She took us into a room and I remember wondering if she was going to try to prepare us for seeing Mom’s very end or if we were too late. It turns out that there was no way we could have gotten there fast enough between the sudden health decline call and her death. I’m able to quiet that guilt sometimes, especially with all of the documentation (I was medical proxy and Executor, plus Will Executor, so I temporarily had access to enough information to learn a bit). I was still having some severe cognitive issues at the time and thankfully wrote everything down, in case I couldn’t actually remember details later, which is a blessing.

So on the anniversary of my daughter’s miscarriage my grief pulled at me enough to write about it all. I like to think that Mom’s with her favorite deceased relatives and is now with her granddaughter, too. It’s peaceful to think that she was so incredibly happy to be a grandmother in whatever capacity she could to my stepsons, that now she gets to be a grandmother without all of the health issues or trappings of life. I’m honestly still struggling with religion and what I truly believe, but I find solace in imagining them together, along with my grandpa and uncles.

And the box holding her ashes, along with all the documents needed for travel, sits in the basement surrounded with some of her favorite things and pictures of happy moments. When we take our family trip out to CA in a few years hopefully, we will take an extra day to go to the ocean to scatter her ashes (yep, I have all the EPA rules and stuff, plus how to travel with cremated ashes; I know even weirder trivia now). Every Sierra anniversary is honored with a white flower for her and I plan to dry this year’s, and add the crumbled petals to the ashes. Mom always wanted to be scattered at the ocean and I really like the symbolism of honoring Sierra with her, and saying goodbye to them together, shared with the wild and wondrous waves.

My mom almost made it to seventy, which is impressive with how long she struggled with COPD and comorbidities. Sierra would be 22 now; lost 23 years ago, and would probably be graduating college this year. It’s a little bittersweet to have moved Young Man to college and drive down to celebrate big moments in the start of this stage of life, because I now can more clearly imagine how her college life might have been. How she would have been home on summer break still and able to say goodbye to her grandmother, who would have been along for the full journey of being a grandmother. So Sierra’s white flower petals in with her grandmother’s ashes feels right.

I’m about to see the two new doctors to take over my Clonazepam withdrawal journey and go through a controlled (hopefully) withdrawal soon. I plan to blog about that in case any of the documentation of my experience with Clonazepam helps someone, so the other part is out there to help provide an example of what could happen, but I needed that time away from everything. I haven’t even logged into SL in so long now that I know it’ll be crazy with updates once I finally do. I haven’t done any gem art. I am working on finishing coloring some butterfly pictures my mom was working on before she passed. Her mother in law suite looked like she would come back any moment and I had to dismantle most of it; going through everything and getting things settled, that I wanted to complete something for her. I don’t know if it makes sense to anyone else, but it feels like a way to honor her and close the chapter on her living with us. So things may get a bit wonky again as my meds get fiddled with and we start changing my brain chemistry again, plus my continued cognitive retraining that sometimes results in weird blog posts and text messages. *soft smile* Clonazepam still sucks, you know.

Today (now yesterday) honors butterflies, white flowers, and the songs “Angel”, sung by Sarah McLachlan, and “Jealous of the Angels”, sung by Donna Taggart. My mom felt a strong connection to that song when her last brother passed away and it felt right that it would also honor her now.

In loving memory of Sierra Nicole and Joyce.

Ambulance, Hospital, Therapy, Oh My!

I’ve had a rough two weeks. My withdrawal symptoms progressed to the point of barely functioning. A week ago we were in bed watching a show and I commented that I felt really weird. I snuggled into my husband’s side and tried to rest my eyes for a bit, to try and shake whatever the “weird feeling” was. My memories get a bit fuzzy after that. I remember starting to have involuntary movements while I leaned against his side and as the intensity increased I ended up nearly laying across him. This odd sensation seemed to pour over my head – like a cool waterfall of electric tingles that went through my entire body. It began to feel as if I had some G-forces pushing my head back into the bed and I began to struggle to move by choice. I then began to feel a tightening in the back of my head, where the neck meets the skull, as if someone had reached in, grasped the nerves and spinal cord, and started pulling.

I can’t clearly remember some of this, but as the pulling feeling worsened the involuntary movements increased until I was nearly thrashing about. And then all of a sudden my entire body was racked in waves of convulsion. I couldn’t open my eyes, barely able to form words, and he tried to hold my head to stop the thrashing of it, back and forth. I remember hearing a noise, unlike anything I had ever heard, and it took a bit to realize it was coming from me. Then the movements started to come right on top of one another. One of the scariest parts was that I was alert but trapped inside my body. I was trying to cry out that I was still there, still awake but out of control, and he held me tight to help reduce the movements. After a bit of this I was finally able to force a few words out to say I was conscious but couldn’t stop my body. He called a medical friend and asked if this was part of the withdrawal or what it could be, because the movements progressed until it seemed like I was having grand mal seizures almost nonstop. It was decided that this was definitely not normal and he called 911. I remember that I was able to identify that the pulling feeling in the back of my head would increase and trigger a round of severe movements, and was able to moan out that it was coming. I was in so much pain and absolutely terrified.

I worked in a neurology office for years, and I love to learn, so I had studied anything I could get my hands on related to the field, and had watched videos showing the different types of seizures. I knew that I shouldn’t be aware during convulsions, so I knew I was in trouble but didn’t know what was happening to me.

The firefighters arrived first and then the ambulance. I remember voices and my husband telling them about the withdrawals, showing my medication journal, and trying to follow instructions. I must have stopped long enough to say that I had been on a volunteer department and understood the chair that they were going to strap me into. The convulsions intensified as I tried to move. My memories are pretty spotty after I was strapped into the chair. I remember crossing my arms and them being strapped against me as my body thrashed about, and I mumbled random things. I was unable to open my eyes for some time, so everything seemed to be in slow motion except for the convulsions. They carried me, strapped in the chair, down the stairs to the main floor, and then started to take me outside. It felt like they carried me for an hour out in the hot sun and I kept trying really hard to respond to questions, but it was like I was screaming inside of my head with barely anything coming out of my mouth. I vaguely remember being transferred to a gurney and raised into the ambulance. There seemed to be a dozen different voices talking all around and to me.

And then we were on our way to the hospital. I don’t know what happened to help calm the movements enough to have some breaks and be able to push out more than a single word, but at some point during the ride I relayed my situation, my med list, and what I felt as a convulsion was about to start. The monitor scared me because the alarm was sounding each time it read my blood pressure. I was 177 over 100-something. I don’t remember arriving at the hospital, but I do remember being able to open my eyes as we were about to enter the building. I couldn’t move my head without triggering a convulsion and was back to barely forming a word. My mind was going a mile a minute yet somehow not always present in the situation. I had a long group of convulsions as they were being triaged because the hospital didn’t expect us yet. I understood that they weren’t prepared yet, that they scrambled to get attendees to a room, and I very vaguely remember the bright glow of the lights in the room they wheeled me into. I remember them saying they needed me to try my hardest to not move as they transferred me to the hospital bed.

I remember feeling like I was in a hammock being lifted and then I blanked out for a bit. Once I was able to open my eyes again slightly, I realized that the “hammock” was the blue bag from the ambulance gurney and it was enclosing me like a full body shower cap. That seemed absurdly funny right then. I have no idea why. And I then remember faces popping into view and blocking out the ceiling lights. The rails were lifted at my sides and I remember gripping them as hard as I could to try and stop the convulsions as they came. In between bouts I was able to tell them what was going on, but it was just a few words at a time, and I got frustrated while feeling their frustration too. I also noticed that my fingertips hurt from them testing my glucose a few times and my elbow had an iv port in it. Dude, that was a seriously talented EMS worker to have managed that. I was just getting better at speaking and keeping my eyes open, notifying when I could feel that bunching feeling in the base of my skull, when I saw my husband in the doorway.

Thankfully he had my meds, my phone, everything with him, and he was able to recount everything that has happened in the past 7 or something weeks (I’m still struggling with being able to recall many of the details through most of the withdrawal process). I logically know I was lucid for a good part of the time I was in that room, but I’m honestly not sure how much is what I remember and what my brain made up to fill in the gaps. I remember that I still couldn’t move anything except my eyes and sometimes my fingers. I could slide my hand along a surface, like when I gripped the bed rail during episodes, but I couldn’t lift anything. I couldn’t even wipe the hair away from my mouth and eye, or even shove the elastic area of the transfer bag off of me. It had pulled in on itself and I felt like a pea enclosed in a pod with a sliver of my body exposed. I remember him moving my hair out of my face, holding my hand, and soothing me. I also remember asking repeatedly what could be happening since I was alert during the convulsions, so seizing didn’t make sense to me.

They drew blood and then wanted a culture. I can’t even remember getting into a wheelchair to get wheeled to the restroom to provide the sample to culture. I remember trying really hard to control my movements as we went down the hall, and then I remember having a bout of movements at the sink. I have an image burned into my mind – the reflection showing me how the movements looked as I held onto the sink and how incredibly sick I looked. The nurse came in to help me get into the chair and I don’t really remember much of our trek back to the room. I remember her saying how incredible my husband and I were with one another, and how attentive he was, but I don’t even remember getting back in the bed.

At some point an intimidating Hospitalist came in and we recounted everything again. It was hard for anyone to believe I hadn’t had a recreational overdose, and they were floored to find out that I had been prescribed Clonazepam for so long and that the doctor was completely unavailable, or that I was left to go pretty much cold turkey off of the benzo. One of the workers (not sure if it was the EMS, nurse, or one of the doctors) admitted that she had never heard of someone being prescribed it for long or of a doctor saying it would be a lifelong medication. I think at this point they pushed some saline and Benadryl through the IV port. As long as I didn’t move the convulsions seldom occurred then.

I remember a second doctor coming in, saying that he thought I had a toxic amount of the Hydroxyzine antihistamine that I had been taking for the past two weeks, and that they were going to keep me overnight. It turns out that it wasn’t a good choice of medication to help with withdrawal symptoms. He confirmed that I hadn’t been having seizures and one of the attendees said I had dystonic movements with pyramidal symptoms. Finally someone said it was like the prescription equivalent of alcoholic DTs.

There was a really long trek to my assigned room and I had to keep my eyes closed most of the time, because the lights and movements made that bunching feeling in my neck build a bit. It turns out that they had wheeled me into another wing of the hospital until we finally ended up in a room in what someone said was the ICU. I remember it being very difficult and scary to move into a wheelchair outside of the room, although the nurse was so incredibly soothing. She took me straight to the restroom so I wouldn’t have to move again for a while once I was in the bed. Her quick reflexes saved me from banging my head into the metal handrail and from falling. I can’t clearly remember getting into the bed although I slightly remember her putting the hospital down on me. My next memory is of an IV beside the bed and rails up with cushioning along most of my body. At some point they had given me another dose of Benadryl and everyone seemed surprised I was awake. I was awake but my mind was like Swiss cheese.

I remember worrying about my husband’s arm hurting from keeping it bent over the rail of each bed, holding my hand. And I remember feeling like I couldn’t say “I love you” enough, although I couldn’t tell you if I even managed to say the right words most of the time. Then the nurse brought in a boxed meal because I had been in the other part of the hospital a long time and it was beyond dinner hours. It took some really slow adjustments to be able to sit up enough to try to eat (for a long time it felt more comfortable to be flat when the convulsions hit, plus changing position would trigger at least some involuntary movements). It was incredibly difficult to chew and I got really sick to my stomach just eating a little bit of the turkey lunch meat, so they gave me some nausea medicine. We also realized that some of my nausea is because of some weird thing that occurred to me years ago as my Fibro progressed; I can’t drink straight water. It’s unhealthy as can be, but the main drink that my body tolerates is pop. Most other things, especially water, causes me to toss cookies. So lemon lime pop to the rescue.

The poor guy looked so exhausted, and I knew he had to be starving, so I asked my husband to go home for the night. No sense in sleeping on the little foldout couch that was in my room. After he left the nurse gave me Ativan and continued to check my blood pressure every half hour or so. I was given something for the hypertension and then another when the BP continued to trigger the alarm. At some point she got me settled down to try to sleep, but my body had other plans. And then the universe did. The alarm on my IV pump went off a lot due to a false reading that there was an occlusion. I think that went on for an hour or so. I remember dazing out to PBS throughout the pump issues, until she decided to switch pumps and my IV began to run smoothly again. That’s when the fire alarm started going off. She came in to assure me that someone probably burned something in the microwave or something, so not to worry. It went quiet and then a minute or so later lights and alarms were going again. She told me she was going to shut my door per protocol, but would be right back to evacuate me if it turned out to be a real alarm. After a bit the hubbub died down and as the next show came on the alarms and lights went off again. I must have finally fallen asleep for a brief bit because the next thing I remember is waking to my BP and Pulse Ox being performed. I was considered high risk for falling and the amazing little gal managed to get me into the wheelchair and helped me take care of necessities, and had to bear the brunt of my body to get me back in bed as the movements became intense again (not like the earlier ones though, thankfully).

I barely remember the first morning in the hospital. I remember seeing my husband come in and being so relieved. I hated that my health caused him to call in to work, but I’m simply not as scared when he’s nearby. My mom later came to the hospital and he wheeled her up to my room (she has her own health issues kicking her hard right now), and we visited for a bit before she got too worn out. I think that sometimes I straight up zoned out, because I didn’t feel like I slept, although neither commented that I had, but I was definitely not alert and only remember bits. I also remember getting an anticoagulant shot in my stomach and it hurt like a #%^! At some point they also turned on the alarm on my bed to alert them if I fell out of bed or tried to get up by myself. That’s particularly annoying when you don’t feel well and want to go to the bathroom by yourself, especially since there were other patients being cared for, so sometimes there was a wait. Plus we all know I have a stubborn streak when it comes to being told that I can’t do something. 🙂

That day a new doctor made rounds and called in for a psych consult along with PT and Occ Therapy. The Psychiatrist was phenomenal. He asked questions that nobody else ever asked and even discussed my ideation in such a casual way that it didn’t feel like some bad secret. He truly understood that it was there and that I didn’t want to carry it out, and that I am the happiest I’ve ever been, so it doesn’t make sense that I had ideation again. It turns out that the Clonazepam had helped it, but I had done a lot of work mentally too; however, nothing was strong enough to override the invasive thoughts when my brain was having a hard time healing from the Clonazepam’s destruction. The doctor decided that the safest thing was to put me back on a low dose of Clonazepam, never touch Hydroxyzine again since I’m apparently very sensitive to it, and allow my body to recover. Over the course of 6 months to a year whichever doctor takes over my care will slowly taper it out of my system and prevent any withdrawal.

I remember a sense of peace when he sat in the bed with me before leaving for the night and we just held one another. It sounds like a dime romance, but it truly was like time stood still and it was just the two of us in the whole place. So incredibly peaceful when I felt so broken. And I had hope again.

The two Therapists came in and started going over my normal physical limitations and what worsened with the withdrawal process. We worked at my standing up and holding onto a walker, and then doing a couple of steps sideways, back and forth. It was exhausting and I remember trembling once I sat back down on the edge of the bed. We went over some stretches and strengthening exercises I could safely do in bed and for the first few weeks of my being back home.

That night I actually slept. I slept better than I had in almost two months. And I fell back asleep every time the nurses left from taking readings, changing IV, or dispensing meds. For years I’ve been unable to fall back asleep if I’m awake for more than a few moments, so it was absolutely amazing. I even woke with an appetite! At this point they had given me two or three doses of Clonazepam, the BP medication, a few doses of Tramadol (the spasming irritated my Fibro), and several doses of Tylenol (for the headache and tightness in the back of my head).

The Psychiatrist rounded again and we discussed things; he provided the name of a clinic in a city nearby that I can go to if I’m ever in need of mental health treatment or medication refills, so I’m never in this situation again. We’re actively working to get me in somewhere for a consult, but at least there’s a safety net now.

A new set of nurses were assigned to my area and one (the most amazing nurse I have ever met and would love to even sit and chat outside of a medical setting, he was so awesome) let me set the pace and test my progress. I had done as many stretches and gentle movements as I can handle the night before, so I was feeling kind of eager to see what I could handle. When he gave me the cup of morning meds I didn’t have a single wild movement while taking them. And instead of automatically bringing over the wheelchair, he let me decide what I wanted to do, and I got to slowly stand up without assistance, brace myself on the walker, and shuffled to the restroom with him pulling my IV behind. I even got to have the door closed. Privacy is seriously taken for granted. He had to caution me to slow down when I came out and went to wash up and get back to bed. He was ready to grab the strap around my waist that was to help hold and catch me without injuring my arm or such, but I was able to get back in bed with the slightest bobbing about. He even let me walk with the walker a bit more later.

When the Therapists made their round they were so excited to see how eager I was. One followed with the wheelchair just in case plus my IV pole, and the PT kept a hold of my waist strap, but I actually walked 600 feet around the unit! I had to power nap after that, but they both felt I was doing so well, and so dedicated to the recovery process, that they were comfortable giving their okay to the Internal Med doctor to discharge me.

I had convinced my husband to not take the second day off, so when he got to the hospital it was awesome. I was sitting up in bed, able to talk almost completely rationally, had packed up my little bag of things, and was waiting for the Internal Med doctor to sign the discharge. I had managed to eat a small yet complete breakfast and the headache was gone. Even my overall pain had improved. One nurse removed my IV, which had gotten painful by then, and I also stopped having so many hot and cold spells. My room had a big window and I remember that it was so beautiful as I changed out of the hospital gown. Then I was being wheeled to the entrance by my most awesome nurse and the two guys helped get me into the car.

In the couple of days post discharge I’m still struggling with my memory. I’m able to actively participate in conversation, walk via walker to the restroom and back without any involuntary movements, and do some walking with my cane. I don’t use the cane unless my husband is beside me, just in case, but I was able to do a good little walk before my legs went to jelly and I was exhausted. I have also taken a shower by myself using a bath stool. That’s something we definitely take for granted. I feel pretty good all things considering, other than being super tired and sleeping quite a bit for me. Sometimes everything is a bit wonky, but I know I need to heal from the past 7+ weeks, plus the strain from the compulsive movements.

It’s kind of sad that I went through such a dark and difficult time to end up being back on the Clonazepam. I’m now absolutely convinced I would have died without being put back on it. I’m struggling with the anger I have for being on this medication, for literally putting my life in danger, and for the withdrawal situation happening in a negligent manner. I’m really angry that I missed almost all of summer break with Little Man, missed a scholarship award ceremony for the College Bound, and getting to have “girl outings” with my mom like we did years back. Fibro has taken enough away from me. No prescription should take more of your life away.

Clonazepam Still Sucks

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. 😁

Clonazepam Sucks Post 4

(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.

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…

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.

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. 😊

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