This week was full of letting people down. A full-blow anxiety attack at the DMV where Corey had to take me home. Another infusion appointment, when I was hoping for another week or two. A failed sleepover/movie night with my mom and aunt and sister, all because the darkness in me has been in control. Anxiety, depression, trauma, agoraphobia. They have been making my decisions. They have been dragging me back when I’m trying so hard to trudge forward.
Ket. Infusion
Anxiety attack
I often feel that I am a disappointment. Like I’m challenging to love. There exists a version of myself that lives right under the surface, sometimes visible, and she is the one that people want around. Instead, what they get is me- dark, weighed down, distorted by my issues. Like looking into a reflection that isn’t fully mine, I can see her there if I look long enough.
I want to reach that other girl, to invite her to take my place. I know she would be the better sister, daughter, partner. She would do all the things Kayla wants to do, be the fun sister she deserves. She would support Corey better and create a more equal partnership. This alternate me would graduate from college, and go on to help people the way we were supposed to.
And I will gladly slip under the surface for her. Walk fully into the dark, submerged. Let her shine.
WOW it has been awhile since I last posted. With the state of the world and everyone having to face new challenges, I felt silly blogging about my issues. Everyone has struggled lately. However, through quarantine I’ve realized just how important it is to be able to relate to one another. The sense of kinship we discover among people who go through similar things often gives us strength. Feeling SEEN, feeling HEARD, feeling VALIDATED does wonders for the head and heart. At least it does for me. On the off chance someone reading this feels that sense of kinship, I wanted to be sure to get back on here and open up about my experiences.
Ketamine
This blog began with my ketamine journey, so let’s start there. I have been fortunate enough to still receive regular infusions and I believe they help me significantly. Additionally, with the help of Zoloft, I have even been able to reach my longest break between infusions – 8 weeks! Hopefully that will become the new normal for me (as opposed to once a month). Between the Zoloft and Ketamine, my most severe depression symptoms are largely under control. It’s not a cure, but the ketamine gives me more space and resiliency to deal with any mood episodes. The depression isn’t quite as debilitating, the negative thoughts hold less power, and I am better able to combat those feelings of hopelessness and worthlessness. It is a tool, along with Zoloft and therapy, that I can put to work against my mental illness. For that I am so thankful.
Infusion Day Feb.19
Chronic Pain
Although I probably should have created a separate blog for my pain journey, for now I’d like to skip to the end – On February 3rd, 2021 I had another surgery (#5 I believe?) where they implanted a permanent spinal cord stimulator to help me manage my pain. The surgery went well, and for the most part I am healed (although full healing takes a few months). The next step is a somewhat slow process where every few days I change the program or the intensity of the stimulator as I try and find what will work best for my pain. My primary area of pain is the nerve damage in my pelvis, which extends down inside my right leg as well as into my right hip. I control the stimulator with a small remote that contains 5 programs, each with 7 levels of intensity. After every adjustment, I have been instructed to give about 48 hours for the full effect. They have the ability to combine programs – if one setting works best for my leg but another works better for my pelvis they can combine that and customize it! They have hundreds of program options, so it’s just a matter of time before I find one that greatly improved my pain.
For now, I’m still stuck in this weird limbo between having had surgery to make me better but not *actually* being better yet. It can get quite frustrating, which in turn makes me feel guilty – I’m lucky to have had surgery! But after over a year of pain, I am eager to put this chapter behind me. If you have questions or comments about the SCS, the trial, or how I got to this point in my pain journey, please feel free to reach out to me.
Hospital pic, cyborg gear, healing process
Other mental health musings
The thought of trying to go “back to normal” makes me physically nauseous. I have adjusted fairly well to my current situation – coping with chronic pain and living through a pandemic. For me, this meant spending a lot of time alone and not leaving my house (most days I barely even leave my room!), as well as setting lower expectations of myself for each day. As I continue to get a better grasp on my pain and as the world starts to open up again, I find myself feeling completely inadequate. I am not ready to go back to the big picture. I enjoy the small spaces I inhabit now, places I feel safe and comfortable.
Isolation has taught me a lot about myself and I have found I now have a lower tolerance for pretending, for being uncomfortable, and for expending energy on things that don’t interest me or serve me. Another factor of being “stuck” at home is that it allows me to stay in an environment that caters to my sensitivities. When I need quiet, I get it. I can easily avoid feeling overstimulated or overwhelmed. I can disengage when I need to, not having to worry about how strange I must look as I stare at a spot on the wall for half an hour. There is no pressure to be“on” all the time, I don’t feel on edge or like I’m waiting for the other shoe to drop. I realized I spend a lot of time in flight or fight mode.
Obviously, I have quite a bit to work on, and I imagine I am not the only one. The pandemic will continue to have a major effect on mental well-being, exacerbating previous problems as well as bringing to light new issues. Whatever you may be feeling right now is VALID, and you are absolutely not alone. Be gentle with yourself and others. Ask for help (if you’re in the US text 741-741 to be connected to a trained crisis counselor).
As I looked back at my previous post I laughed – I didn’t even recognize the person who wrote those words. Mental illness is so challenging. When it’s bad it can be so bad. To be afraid of your brain and the things it makes you think is a uniquely terrifying feeling.
Much has happened since I posted last. I have been continuing ketamine treatments; my last infusion was three days ago. I’m not sure why, but it was hands down the most difficult “trip” I’ve experienced so far. I seemed to lose all sense of reality entirely. I couldn’t figure out where I was, what was really happening, how much time had passed. Usually during my infusions I can somewhat orient myself even when I get confused. This time was the most out of touch with reality I have been and I couldn’t seem to bring myself back. It caused a lot of anxiety. The ketamine hangover was rough as well – I woke up the next morning with a severe migraine, nausea, and brain fog.
Feeling rough post treatment (I was not driving)
Now that I’ve had the weekend to recover I’m feeling a bit stronger, and I’m hopeful that it will get my brain to a better and brighter place.
In my previous post I mentioned finding a psychiatrist and starting medication to help with my severe anxiety and agoraphobia. After a lot of insurance bullshit, not to mention the insane waiting times and the fact that some places are not even accepting new patients due to high volume, I *was* able to connect and get started with a psychiatrist.
The first medication we tried was Paxil – to say it did not go well is an understatement. The medication seemed to have triggered some sort of episode for me. Random crying, paranoia, mood swings, dissociation, distorted thinking, and racing thoughts were all mixed with extremely low, depressed mood. I couldn’t eat, I slept constantly, and I felt completely unstable, unsafe, and erratic. It was a nightmare. I had to miss a family vacation that I had been looking forward to because I simply did not feel that I could keep myself safe or sane enough. I felt like my brain was turning itself inside out. I found myself singing let’s not have a mental breakdown today multiple times a day (Spoiler alert: the song didn’t help). I couldn’t focus and I just felt this darkness emanating from inside my head. I knew the lens with which I saw the world was tainted, but it all felt incredibly real.I didn’t think I’d ever feel like myself again. I felt strange, half dead, and alone in the weirdness.
[[Shoutout to my friends and family who supported me and kept me safe during all this! You guys really should get compensated or at least a vacation or something]]
With the help of my psychiatrist, I was weaned off the Paxil and started on an antipsychotic to help get me stable. I am now completely off the Paxil and have started Lexapro. Fingers crossed that it goes much smoother!
In addition to my mental health struggles, I’ve been having some physical stuff going on (I guess the brain stuff isn’t enough- maybe I needed to diversify my portfolio a bit?). The surgery in March did not help like we had hoped and I am still having quite a bit of pain. Since my last post, I had an appointment with a pain specialist. She determined the mystery pain is likely nerve pain due to the multiple surgeries I have had in that area (4 now!). I went in for a nerve block June 30th, which helped a TON- for like two weeks.
I’m scheduled for a second nerve block on August 12th (which will hopefully last longer). We also discussed more permanent options- one being a plan I like to call “Robot Kristin”. Although it would technically make me a cyborg and not a robot, this plan is where a Spinal Cord Stimulator would be implanted to help control my pain. I’m extremely nervous for this option but excited at the potential relief it could bring. I really would like my body and life back. Cyborgs are cool.
Last but not least- I moved! Corey bought us a house and we moved in the first week of July. It’s lovely and we’re very excited to be here.
… and that is a pretty good problem to have right now.
My last round of treatments was a success. My mood has been elevated, and I have been in a much better place than I had been in months. I feel lighter, more resilient, and more determined to keep fighting.
Feeling good after a long period of depression is strange. At first you don’t really trust yourself – Am I really feeling happy or do I just wish I was happy? And then you realize that your brain doesn’t just let you pretend to be happy – this must be the real deal! And then the thought – People just FEEL this way?! That must be nice! Some anxiety comes along with the mood change as well. You know from experience that this happiness is likely temporary. Bipolar disorder comes in waves, and it’s an inevitable part of the disease that you will feel down again. But what I am working on is taking full advantage of my good days so that I’m in a better position to fight during my bad days.
These past few weeks I’ve been working on taking baby steps to create new healthy habits. I’m using an app called “Strides” to track my progress. I’m working on incorporating exercise (something that does NOT come naturally to me) and bought myself some rollerblades to make it a more enjoyable activity. I set reminders on my phone to reach out to friends 5x/week so that I don’t begin to isolate or withdraw. Relationships and support and connections to people are great protective barriers against depressive symptoms. I also have goals to stretch every day, and to try to watch two movies a month that I’ve had on my list forever (depression makes you lose interest in things you usually enjoy. I’m hoping this will help me re-train my brain to seek out things that I enjoy). My biggest challenge right now is fighting the anxiety and agoraphobia that’s been gaining power during the last several months. I’m pushing myself to go outdoors for small periods of time every day.
Without the infusions, none of the things I mentioned would be possible. The goal setting, the HOPE I have, the drive to get better and keep challenging myself are all possible because the ketamine treatments help keep the depression and suicidal thoughts at bay. The treatments provide me with room to breathe and hope, with extra space in my head as well as energy and focus to work on the other parts of my mental health. It also gives me my voice back. When I am down, I feel helpless and hopeless. I have no voice rallying against the darkness, no voice that says there is so much more to you than how you’re feeling right now. After my last treatments my voice has returned. I am finding that I do, in fact, like parts of myself. I’m not just this blackhole of depression and despair. There is more to Kristin and I am still finding her. I am so grateful for that chance.
With my depression currently managed, I am working on getting other parts of me healthy. The infusions are a part of it – but recovery is a big picture, and a multi-faceted process.
Other Steps I’m Taking: – Seeing a therapist to work on coping skills, anxiety, and talking through past traumas
– Made an intake appointment to get a psychiatrist so I can possibly start on meds for anxiety
– Made my first appointment with the pain clinic that my physician recommended. Unfortunately, the surgery I had in March for my chronic (and unexplained) pelvic pain did not work as well as we had initially hoped. I’ve been having more pain with increasing intensity so we’re on to the next doctors in search of help/answers.
The sun is out, and for the first time in a long time I can actually feel its warmth and light. These are the moments I need to look back on when things go dark again. It is possible for me to feel okay. It’s possible for me to feel HAPPINESS even. It’s just more of a challenge, and something I have to keep fighting for.
“Treatment is complicated. I wish it were easier. Your persistence is required, so keep trying very hard” – My Uncle Steve
“These medical problems take something from you, and it happens insidiously. It happens so slowly that you do not always notice it is happening. While medicines can make you feel good, getting your confidence back and your autonomy back will only come from you pushing some of your boundaries … this process is lengthy…I know you are going to get better and get fully back on your feet, though that process may seem daunting. You can do it, but taking those first few small steps are the most difficult. I am confident that you are going to feel well again and be successful in finding happiness.” -Dr. Patel
The name of the game is *fight back*. Don’t give up. Keep pushing, keep trying, keep challenging your mental illness. But dear lord that is difficult. When your brain has been repeatedly chewed up and spit back out by mental illness, it becomes much harder. The fighter in you is tired.
The fight takes place on many levels.
You have medication- which may lessen some symptoms, as well as give you more strength and the ability to be in a position to fight. It says “here are some gloves and a mouth guard, good luck.”
You have therapy- which teaches you coping skills and how to recognize certain thought patterns and behaviors so you can be a more prepared and effective fighter. It’s like the coach that teaches you to jab and swerve and duck. Maybe do a cool trick off the ropes or something.
When it comes down to it, these tools are great but they are not enough on their own. It’s still just you alone in the ring. You, who knows from experience that you’re going to get kicked in the teeth, repeatedly. And yes, the mouth guard helps, but it still hurts like hell. You’re the one who is going round after round after round. Yes, the lessons you learned can make the fight less damaging and more evenly matched. But you’re inevitably still going to come out bruised and bloody and tired. But you have to fricken do it anyways. It takes YOU.
And that’s both the incredible part and the shittiest part. Every time you survive a round with your mental illness, that’s YOU. You did that. You said “NOT TODAY BITCH!” or sometimes it’s more like “please leave me alone now”. Either way, YOU are powerful and you survived. The reason I say it’s the shittiest part too- because as empowering as it is to be a fighter and get through your worst moments and keep going- is that you have to do it again and again. Forever. It’s on you. You can’t tag anyone in. You can’t take a break. You have to keep fighting.
For me, my fight is daily. I have to choose to fight every day- to get out of bed, to go for a walk, to text a friend, to work on not letting my depression and anxiety take away any more of who I am. I’m fighting to get myself back, whatever that may look like. Sometimes I’m not even sure exactly what I’m fighting for because I don’t really know who I am outside of my mental illness. But I guess I’m fighting to find that out.
Today was round 2 of 3 treatments that I am receiving in quick succession. I had some luck with my treatment last week, indicating the ketamine is still working on some level. It’s just isn’t quite as effective as it has been in the past. My next one is on Monday. We’re hoping this will get me to a point of stability. If not, I will probably take a 3 month tolerance break and then re-load. Dr. Patel has found that to be extremely effective for his patients.
No matter what happens next, the fight continues to be on me. It’s more than the meds and therapy. I must keep pushing myself, keep looking forward. I’m taking baby steps, but a lot of them. And I’m using all the tools I can. And I’m still freaking fighting (even if it’s often begrudgingly).
Yesterday I went in for another infusion. I only made it two and a half weeks (compared to my usual four weeks).
After my last appointment, I didn’t get any sort of boost. I still felt debilitatingly depressed, unable to function, and extremely hopeless. I wanted to just sleep forever. I couldn’t make myself eat, shower, or get out of bed. My normal distraction tools weren’t working for me- I couldn’t even watch TV.
It was the type of depressed that you feel throughout your whole body. My bones were made of lead. My brain was half-lit and encased in sludge. It was as if someone had drained the life and energy from me , and replaced it with tar and whatever the heaviest material on Earth is (Google says it’s Osmium). So there I lay, filled with Osmium, wondering why I bother to keep trying when it seems pretty obvious at this point that my brain and body want me dead. That’s when I knew I needed help.
I am incredibly lucky to have funds from the generous donations made to my GoFundMe page. This made it possible for me to get treatment when I needed it without having to worry too much about the additional costs. Thank you to those who have donated. ♥️
At my infusion, we discussed options. Since my last one did not help, it could mean several things. It could be a reaction to the current situation- I have talked in a previous post about how isolation and the global pandemic can worsen mental illness symptoms. Who *isn’t* feeling a bit hopeless? It could also be that I am developing a tolerance to the ketamine. This would be unfortunate, but it is something that happens, same with many other mood stabilizing drugs. In that case, they would recommend taking a break (typically about 3 months) to let your system reset. When patients take a break and come back, they find treatment to be much more effective. While that idea is mildly terrifying to me, I know it would be for a greater good. And I would manage somehow.
They increased my dose slightly during yesterday’s session in hopes that it might be the extra kick I need to feel better. So now we wait. If I get relief- that’s amazing. We know it’s still working for me. It’s possible I may need to go in a little more frequently during this time (they have some patients coming in weekly!). If I don’t get a boost- we discuss the option of taking a break to try and break down my tolerance.
This is another thing that is out of my control. My mental illness is not my fault, but it is my responsibility. Between therapy, infusions, using my coping skills, and now also looking into adding a psychiatrist- I am doing all I can to manage it. Hopefully it gets better. That’s all I can really do. Continue to hope that it can get better.
Post-infusion selfie.
Feel free to leave a comment of how you manage – coping skills, words of encouragement, anything. Stay safe & healthy out there.
Mental illness during a global pandemic is something I never had to imagine. In many ways, the “stay at home” order mirrors many aspects of my depressed and anxious lifestyle. Isolation, fear of leaving the house, major uncertainty about the future and what each day will bring.
I saw this tweet (above) and it resonated with me as I’m sure it does with many others. We’ve fought so hard to stay in a world that seems to be punishing us for that effort. We stayed in hopes things would get better, only to be met with something we could have never imagined. To those of us who have questioned our purpose, debated the worthiness of fighting through the constant pain, we are now facing another obstacle. Another bullet point on our “pros and cons” list. It’s very hard to keep perspective even when all is well in the world. Finding it now is akin to searching a deep darkness with a failing flashlight. You should expect to stumble, to fall, to lose the light altogether at times. But I’ll reference another quote I’ve seen recently- “The sun will rise, and we will try again.”
During all of this, those of us with mental illness need to be aware. Isolation exacerbates symptoms of depression, and with everything going on anxiety will be at an all time high. Pay attention to your symptoms. Pay attention to your coping mechanisms. Reach out for help if you need it.
The main message is this: It is a strange time for everyone. This global pandemic is something our brains have never had to cope with. Things may manifest themselves in weird ways. Be patient with yourself. Keep working through it. Celebrate the small things. Find hope wherever you can. Remember- Everything is temporary.
It’s been a rough month health wise. After a bladder infection, I had continuing pain in my lower abdomen/pelvic area. 6 weeks later and many doctors visits later it’s still not gone. Currently I can’t sleep, can’t eat, can’t work, and spend 90% of my day in bed. The pain is constant and aggressive. I can’t imagine how people with chronic pain conditions manage – it hasn’t even been that long and I’m so mentally and physically exhausted.
I’m scheduled for exploratory surgery March 18th. I’m trying to remain hopeful I’ll get some answers/some relief. In the meantime, I’m lucky to have such supportive people in my life. I had my 27th (!!) ketamine infusion last week. With physical pain, mental health can easily deteriorate. Being isolated and unable to do most activities can lead to depressive symptoms. Not knowing what is going on with my body leads to major anxiety. It is a battle, but I am fortunate to have lots of tools to combat those things.
Thank you to everyone for their support, positive vibes, prayers, etc. And a special thank you to my mom & sister for setting up a GoFundMe page to help with the costs of treatment, and to everyone who has so generously donated.
Kristin on Ketamine 