A Series Of Unfortunate Events

So late last night I wrote this long post detailing everything (well most things) that have been happening lately, I decided that most people really don’t want/need to read all those details so let me just sum it all up. (if you are really interested I left the detailed post at the end)

Stuart was laid off yesterday because of lost revenue due to COVID-19. It came as a huge shock and I’m still processing it all. I know we’ll be okay, we are in this together and that’s all that counts.

The beginning of last month we cut my SPRAVATO (esketamine) from twice a week to once a week and I did not do well, both the depression and the migraines came back full force. It has not been a good month. This week we went back to twice a week, let’s hope I see improvement soon. More about this later.

About a week ago I was stung by a scorpion while sitting in my living room. I didn’t have to go to the ER or anything like that. I’m fine. I just hurt like hell, and I still have this spot on my leg that feels kind of weird when I scratch it, but it’s getting better every day.

I had a severe allergic reaction a couple of days ago to something, I don’t know what. My doctor thinks it was a combination of things. Simply put I have had too many allergens bombard me at once, so it wasn’t just one thing, therefore it probably won’t happen again. But if it does I have lots of Benadryl and my EpiPen.

So that’s the series of unfortunate events that have been happening in my life. It really hasn’t been all bad, but this post has gotten way too long! I’ll post more soon, I hope, and tell you all happier things. Like, we got added a new member to our family!! We rescued a kitty. I’ll tell you all about Brody and more soon!

Brody, his first night home.

If you’d like to read more details here they are, this is the post I wrote last night….if you read it, you can tell I was not in the best frame of mind. I hope you’ve had a better month.

It’s 1:33am and I’m sitting here in tears, today, um yesterday, the most recent and the worst of the latest in a string of pretty crappy events happened and I’m not taking this last one very well. Stuart was laid off. We were finally affected by the backlash from COVID-19. It came as a huge shock. There was a big layoff in his company right when they started the work-from-home phase, we felt it was a knee jerk reaction at the time. We don’t know what to think now. There is no rhyme or reason as to who they chose to lay off. The company he works for isn’t really losing any business. They are a huge irrigation company for large golf courses, agriculture….they do supply Disneyland, but I don’t think they stopped watering their grass just because they’re closed, and that is just a small fraction of their business (all over the world). The only thing they are having trouble with is getting parts in from overseas.His team is down to 3 people! They can’t do all the work and no one knows how to do the things Stuart does. They just shot themselves in the foot.

I’m freaking out. It’s not the money, not really. We have money saved, unemployment is higher right now, he got a little severance package, and we have my small disability income and Medicare, however he was laid off before and was out of work for almost a year, I do not want to go through that again. It totally depleted out savings I finally felt like I could have nice things, now I feel like I have to scrimp and save every penny. I had a house keeper coming in once a month to help me out, I can’t do that now. We had plans for the house and yard, not any more…. I’m heartbroken. I’m shattered.

Now for at least some of the other things that have happened over the last few weeks. We cut my SPRAVATO (esketamine) treatments down from twice a week to once a week and I crashed hard. The depression came back in a huge black wave. It has been suffocating. With the depression, came the migraines, and the increased dizziness and vertigo. The good news, we increased it back to twice a week this week, hopefully I’ll be feeling better soon. But I really do not want to be tied to this stuff twice a week, that takes two days out of my life every week. That isn’t really feasible. I could never even go out of town, and when Stuart gets a new job I don’t think they will be too pleased that he has to take 2 days a week to take me to these appointments.

Next, I was stung by a scorpion. Stuart lived in the desert for many years and never even saw a scorpion, I live here less than 2 years and get stung by one while sitting in my chair watching TV. The irony, you gotta laugh. I had no idea what had happened, I only had this very intense nerve pain in my leg. I yelped in pain and told Stuart, then I noticed that there was a red spot on my leg, and he got me a Benadryl and ice real quick. Because of his quick thinking (we thought it was a spider bite) it didn’t swell at all. It hurt so bad that night I barely slept. For two days it hurt and felt numb at the same time. This was over a week ago and still if I scratch in that place it feels funny, kind of tingly, but it’s getting better. Oh, Stuart found the scorpion the next day, dead. When I looked up the symptoms it was dead on for a scorpion sting.

Day before yesterday I had a pretty severe allergy attack. I was just sitting in my living room and my throat started to close up. Stuart was just in the next room but it closed to fast I couldn’t call out. I took a Benadryl fast, and started looking for my inhaler, which was hard to find simply because I was getting confused. I finally took about 3 Benadryl and used my inhaler so many times I just don’t know. I’m just glad I didn’t have to use my Epi Pen or go to the ER. It did happen again that night, but I got the Benadryl in faster and it ended faster, then yesterday I took Benadry every 4 hours and I was fine. Today I’ve itched a lot. My doctor (I had a telehealth visit with my migraine doctor yesterday and I had to tell her because I had taken my migraine shot the night before the attack) she said it could be a high load of allergens. The allergy count is very high here right now, and then the scorpion, add in a powerful medication, and we got a cat…the combination could have caused it, but one on it’s own probably wouldn’t. So I’m okay there.

I told my neighbor, who has become a very good friend, that she must think I’m a calamity of horrors. I was so touched by what she said, “No, I think you are a beautiful young lady with the most positive outlook I have ever seen” She will never know how much I needed to hear that.

My Normalcy During Pandemic 2020

A Roadrunner, Quail, and Hare have all come to visit me recently. Their world hasn’t changed at all.

I’m so incredibly lucky, my life really hasn’t changed all that much during this craziness, yet, it has.

We’re lucky, no one close to us have lost their jobs or anything like that. It really breaks my heart for all who have and continue to each day. I don’t have anyone close to me who is on the front-lines treating people, I’m so very thankful to these amazing people. I really don’t think I’ll know just how much this has really affected my life until it’s all over and we find out what businesses have survived and things like that. I’m desperately worried for these people. I’m helping all I can, ordering from local sites online, buying gift cards…, but will it be enough?

For me personally, I don’t normally go many places during the week, to doctor appointments, that’s about it. Well that was about it until recently. Recently I started getting more involved in my neighborhood; I was going to Women’s Coffee on Tuesdays and a Women’s Empowerment Journaling/Discussion Group on Thursdays. On the weekend we’d cram in everything else, grocery shopping, seeing dad, entertainment…ANYTHING else! Of course, all of this changes if I’m not feeling well, so things change a lot. I guess that’s why I don’t feel that things have changed all that much, because I’m used to things being canceled. I’m used to staying home, I’m used to not being able to do things I’d like to do, so that part of things isn’t really that stressful for me. But it’s different when you have to do these things and when you are forced to do them.

Truthfully, things really haven’t changed that much though.

I have still been going in for my SPRAVATO treatments twice a week, I start once a week this week. And it has been amazing! First let me assure everyone that we are extremely cautious. I’m the first patient seen, the room is completely sterilized, I only see one person, and they never touch me. Now for the results, as I’ve told you before, my depression is gone! I do feel sadness, but it’s not the same. Sadness is situational and it feels different, oh so different. I never knew just how different it felt. What I haven’t shared is how different my migraines are! I had TWELVE migraine free days last month!! And so far I’ve had 9 free this month! Did I say AMAZING?? Understatement huh? So, let’s cross our fingers it stays this way now that I’m going down to once a week.

I still see some of my neighborhood friends, just from a distance. We have “6 foot plus” patio visits. A couple of us will meet on our patios sitting 6 feet plus apart and just visit for an hour or two. It’s so nice to have a little bit of normalcy in this craziness. I admit I’m upset that as soon as I start feeling well enough to get involved and make new friends I’m sidelined by something that has nothing to do with me, but it is forcing me to take it slower, and that might be a good thing.

Stuart working from home seems weird. Even though he did it for seven years, I was really sick then, now that I’m not as sick, and I got used to him not being here, it’s harder having him around all the time. Well, not hard really, just weird, but it is kind of nice too. Now that he has finally gotten off the dining room table and has his office set up it’s much nicer! Plus, he doesn’t have to add in travel time to go to or from work!

I’m trying to spend more time in my studio, but I haven’t found that I’m actually creating more, I’m just hanging out in there. I’m enjoying that a lot though. I go in there and sort through emails and organize stuff and think of things I want to do and plan things…..But actually paint or anything, yeah, I haven’t done much of anything. I don’t know why. I’ll get there. It’s been a while.

Yes, our weekends are different. However, we are still seeing dad if we can. We take him his groceries on Sunday. (Stuart shops for groceries during the week, not on the weekend, that’s just crazy. He says there are still so many people there with no masks or anything just leisurely shopping. WTH?) We also take him lunch or dinner and spend some time with him. We are the only people he sees. We eat with him way on one end of the table and us on the other. It’s quite funny trying to maneuver the house and stay 6 feet apart, but we do a pretty good job. When we were there yesterday he finally talked a little about Margaret’s death and Stuart’s mom’s death, he doesn’t show his emotions normally and doesn’t talk about those kinds of things, I was very pleased to hear him talk about it. It has to be so hard on him. I’m so glad we are able to see him, at least a little, now. He wouldn’t allow us to come see him for a long time, he’d only allow Stuart to come drop off his groceries. It really takes a load off my mind to be able to see and talk to him.

We are trying to do some walking around the neighborhood. I’m trying to do a bit of yoga and more meditation. We put stuffed animals in our windows for the kids to see, and I put a painting in the window just to share prettiness. A lot of people in my neighborhood are doing the same. We are also doing sidewalk art. I haven’t gotten mine done yet, I just got some sidewalk chalk! When I do I’ll take a picture. I will admit I’m eating very poorly, that needs to change.

How many of you have gained weight during all of this?

What are you doing differently?

How are you dealing with how things have changed?

Light Switch Flipped

Image by Arek Socha from Pixabay

This is going to be just a (relatively) short update, if you read my last post you will have a good idea of what goes on during my treatments. My dose pack was increased back to 3 (84 mg), but the “trip” that I had the last 3 treatments was not as intense at the first time. It was pleasant, fun even, but not the same. My husband is so patient to put up with this, he says it isn’t bothered by it at all, but I have to wonder. He is not the kind of guy to just let loose and have fun with you when you are intoxicated and he’s not, and I’ve only seen him a little drunk once; and let’s just say he cannot sing but he’s a much better dancer when he’s a bit tipsy.

An amazing thing happened at the end of the last treatment, I felt as if a light switch flipped, and I looked at Stuart and said, “So this is what it’s like to not be depressed.” It wasn’t the happy silly feeling I was having when I was high, of course I wasn’t feeling depressed then. And during mania I don’t feel depressed. This is different. As a friend asked, “Is it like in the Wizard of Oz when the Black and White turns to Color?” YES!! Suddenly the cloud is gone. It’s just gone. If things weren’t so crazy in the world I’d probably be really happy right now, but as it is, I’m handling things really well. I had a little spell this weekend where things slipped in and I felt the cloud closing in, so I don’t think I’m quite to the point of going to a maintenance dose yet, but This is AMAZING!

I had another vertigo spell that lasted 3 days this week. It was mostly severe disequilibrium. I had no balance on Friday, I thought I had an ear infection. I could not walk without Stuart’s help, and by help I mean almost carrying me. I was stuck in a chair the whole weekend and couldn’t do anything for myself. It brought back the feelings of complete helplessness I had when I was at my worse. That is what triggered the small bout of depression, but it probably would have been worse before this treatment. I’m a bit concerned that I’ve been struck with vertigo each week I’ve had these treatments. If it happens this week, I’m really going to think SPRAVATO might be triggering my Meniere’s. If so, I hope it gets better the longer I’m on it. If that’s not the case, at least in maintenance I’ll only need it once a month, maybe getting it less often will lessen the risk.

So that’s all for this news. I have more to tell, but that’s for a different post.

SPRAVATO (Esketamine) week 1

Last week was my first week receiving SPRAVATO (Esketamine) treatments. I received my first treatment on Tuesday March 10th. I’m sorry I didn’t post about it sooner, it was a bit of a crazy week, as you will soon discover.

I had to fast for 2 hours and not drink anything for 30 mins before the appointment to minimize nausea and vomiting. I also took phenergan. We started out to the appointment with plenty of time to get there, we now live over 30 mins away from the office, traffic was okay then Stuart said, “I’m going to the wrong place.” He had driven to my therapist office instead of my psychiatrist office. I instantly got very anxious. I hate to be late and I was already nervous about this appointment. I’m still not very sure about where things are in this town, I think it makes it more difficult to get to know these things when you don’t drive, so I didn’t realize that we really weren’t that far from our desired destination. We arrived right on time, but by the time we got there I was pretty agitated.

First I was told that the normal person who does this was out and a substitute was taking her place, she would be back next time. I was then asked if I’d like to be in a room with a recliner or a couch, I said a recliner. Then I tried the recliner and it rocked, it moved even when it was reclined. I decided that was a very bad idea if this stuff might make you have vertigo you sure don’t want to be in a chair that moves. So we moved to the room with the couch. We talked about how the drug was to be administered. It’s a nasal spray, it comes in devices that contain 28 mg each, depending on the dose you are to receive is how many devices you use, to be self administered under supervision 5 minutes apart. From what I read you normally start at 56 mg (2 devices) and depending on how that works, you work up to 3 (84 mg). I was surprised when I was to start out at 3. Then she took my blood pressure and it was WAY too high so we had to wait 20 minutes to see if it would come down. Every time I go to that office my blood pressure it high, I don’t know what it is about that place. Maybe it’s the ride over there, my nervousness…?? Anyway, I had them dim the lights, I laid on the floor (it’s a nice, clean room with a nice rug) and I meditated. She came back and actually got on the floor with me and took my blood pressure again and it was down enough to start.

I had to tilt my head back and insert the device in one nostril while holding the other closed, push the plunger and sniff. Then do the other side. Easy peasy. I didn’t feel much, but by the time the 5 minutes were up and I was ready to take the 2nd dose I could feel it a little. I repeated the same administration and WHOOSH! Oh boy I felt that one! I suddenly felt very panicky, a bit paranoid and did not like it at all. Then I realized it was because I was fighting it. So I relaxed and just let it go, and I started to feel just fine. I felt tipsy kinda, but more high. By the time we were ready for the third dose I was giggly and had a hard time leaning my head back for it, but I got it done, and oh what a trip it was. I was told I was quite entertaining. I did not loose time, and I knew where I was the whole time. I did get to where I couldn’t understand what people were saying for a while, and Stuart had 2 heads and a third eye, but it didn’t freak me out. I laughed a lot and got very interested in the smallest things, like the top of my water bottle and the tip of my nose. I said some pretty funny things, that I probably shouldn’t repeat here, but one time I did tell everyone I loved them. As it started to slow down it was just fun, actually most of it was just fun. Something I haven’t felt in a long time. I just curled up on the couch with Stuart and laughed and joked and waited for things to get to where I could go home. The trippy experience lasted about an hour. I had to stay there for two hours from the time of my first sniff, as long as my blood pressure wasn’t too high, the treatment can make your blood pressure rise for 4 hours after. She took it and she couldn’t hear it. She waited and tried again, she finally got it and it was 90/70 so my blood pressure went way down instead of up. hahaha

So that was my first treatment. I won’t go into as much detail about the next one, there are just some more things to know about the rest of the week.

After the treatment I walked outside and started sneezing, I’m pretty sure it was because there was a big bush outside that has just started to bloom, lots of things are blooming here suddenly. I sneezed and sneezed that night until I took Benedryl. I woke the next morning with a bad migraine and vertigo. It was very cloudy and a bit rainy, so I thought it was that. I had to use my walker. The vertigo got worse. If I kept my head straight it was okay, but if I moved, rapid spins! The next morning I couldn’t lift my head without severe vertigo. There was no way I could go in to have my second treatment. I finally figured out it was BPPV (Benign paroxysmal positional vertigo). I’ve had this before a few times, but it’s been a while. The last time my doctor showed Stuart how to do the Epley manuver so he could fix it, and he did, but I had to be upright for 48 hours and it takes a while for you to feel steady enough to move around. Luckily the office was able to change things around and I was able to have my second treatment on Friday.

I got to the appointment and the regular person who oversees this was there. I had a massive migraine, so no surprise my blood pressure was high again. Once again I meditated for 20 minutes and got it down enough to do the treatment. I’m really not liking that. I have normal to low BP everywhere else. That is starting to concern me. But the main thing you need to know from this appointment is that she said I should have started off with 2 doses. So I only got 2 on Friday. It was nothing like Tuesday. She said I must have a higher tolerance. She was surprised at how I could have a coherent conversation. I felt really high, like I had a lot of marijuana, but I didn’t feel like I was tripping. Nothing looked strange, I didn’t feel different (when I had my first treatment my sense of touch was different). So for my next treatment we go back up to 3. When I first got the treatment my migraine vanished, it was bliss because I went in there at an 8+, unfortunately when it ended the pain started to return and ended up right back where it started. I really am hopeful that as this treatment continues I’ll have more lasting results.

I saw my therapist later in the day on Friday and she said I looked brighter. I was still pretty “happy”. We had such a nice visit, we just talked and talked, it was like girl friends laughing. I know it was because I had just had my treatment that day, but that was fun. You don’t normally have that kind of day with your therapist. Hahaha!

Any questions please feel free to ask me anything!

If you don’t feel comfortable asking in the comments, you can send me a private message by clicking on the About Me – Contact Me tab at the top of the page, I’m happy to answer anything I can. If you message me, be aware sometimes I don’t check my email every day, so it might take me a couple of days to get back to you.

Esketamine has finally been approved by my insurance

https://www.spravato.com/

I found out last week the ketamine (really esketamine, um SPRAVATO) has finally been approved by my insurance, and it has taken this long for me to wrap it around my brain so I could write about it.

My doctor keeps saying I’m getting ketamine, but really I’m getting SPRAVATO, which is esketamine. Ketamine is not FDA approved for treatment resistant depression (TRD), it has been used for it off label for quite some time now with very good results but it is very unlikely they will ever approve it for anything other than an anesthetic because it cannot be monetized. That’s where esketamine comes in. “Esketamine is a molecule taken from ketamine’s racemic mixture (basically two mirror image molecules which spin in different directions).   As it is an altered form of ketamine, esketamine could be newly patented.  As a result, corporate dollars were invested in clinical trials that led to the current FDA indicated use of nasal esketamine for TRD.” (Nasal Esketamine vs IV Ketamine) IV Ketamine has been used to treat TRD since 2010 and has a 70-80% success rate, esketamine is also showing to be very effective which makes sense since it is a molecular part of ketamine, but it has only been in use in clincal settings for a year so I don’t feel like we really know long term results yet.

I start my first treatment on Tuesday, March 10th at 2pm. I have to be enrolled in a restricted program called SPRAVATO Risk Evaluation and Mitigation Strategy (REMS) Program. It can only be administered in a healthcare setting certified in the SPRAVATO REMS Program to patients enrolled in the program. I go in and under supervision I give myself the nasal spray. Then I stay there in a quiet room, with Stuart, (there is no way he would let me do this without him being there) and I’ll be observed for 2-3 hours. You shouldn’t drive or operate machinery until the next day. For the first month I have to go in twice a week for a treatment, the second month is once a week, then it goes to every other week….eventually it goes to once a month and that’s the maintenance dose. That’s all depending on how well I do on it. I could go through the dosing faster, or I could not do well on it at all, but that is the normal regimen. I can tell you that I have been struggling with this schedule. The fact that Stuart has to leave work so much so that I can go in just to get this medication, ugh, this is awful. I’m trying really hard not to feel guilty, but it sure it hard. His boss hasn’t made this easier.

Most of the side effects of SPRAVATO are short lived but they can be pretty intense.

  • Dissociation (was reported 2 ways in clinical studies through adverse event reports, 41% of patients, and by using standardized scale, 61% – 75% of patients.)
  • Dizziness (29%)
  • Nausea (28%)
  • Sedation (was reported 2 ways in clinical studies through adverse event reports, 23% of patients, and by using standardized scale, 49% – 61% of patients.)
  • Spinning sensation (23%)
  • Reduced sense of touch and sensation (18%)
  • Anxiety (13%)
  • Lack of energy (11%)
  • Increased blood pressure (10%)
  • Vomiting (9%)
  • Feeling drunk (5%)

It can also cause abuse and misuse. (I don’t really know how since you can only get it in a clinical setting. How can you misuse a drug that you can’t take home?) It can cause an increased risk of suicidal thoughts and behaviors. (Why does it say this on every anti-depressant? Isn’t this what they are supposed to stop? hmmm. Or is this different?…scratching my head on this one) Temporary increased blood pressure that may last about 4 hours after a dose (could this be because people have been spinning and dissociating, and having increased anxiety?? I’m pretty sure my blood pressure is going to be a bit high before we even start.) Problems thinking clearly (not sure I’ll notice a difference on this one) or it could cause bladder problems, such as a frequent or urgent need to urinate, pain when urinating, or urinating frequently at night. (well that could be inconvenient). **all of the information about SPRAVATO came from literature provided by SPRAVATO.

Now you can probably see why it has taken me a while to wrap my head around this. The fear of having a vertigo attack has been real, and the thoughts of dissociation is a little scary, but I’ve been meditating and trying hard to simply stay in the moment and not get too ahead of myself, if I keep on thinking I’m going to get vertigo that’s a sure way to make that come true. I’m going to try hard to go in there with no expectations, simply aware of what may happen and having good thoughts about how this may help.

This is not only for my resistant depression, it is also going to hopefully help my migraines. It has been shown to help, reduce migraines, so I really am going in this optimistically.