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.

Decisions

Image by Jan Alexander from Pixabay

It seems like I often stay away from here more than I intend to. I will come here and sit and think of a hundred things to write and feel like none of them are worth actually putting into words. I have some ideas for posts I want to write about that I think are interesting, but I just can’t get those out right now. Things just aren’t settled enough in me to get the words out right, I’m too self absorbed, I guess, to sit down and write about anything intellectual. So for now, if you will hang in there with me, you are going to hear more about me.

I made a huge decision this weekend, I’m backing off on some treatments. Yep, you heard right, I’m so tired of it all I’m taking a break. This is simply taking way too much out of me. More importantly, it’s taking way too much out of Stuart. He isn’t complaining, but I see it. I have at least 1 appointment a week, normally 2, often more. He has to leave work early at least one of those days. If I have an appointment at the pain management doctor he has to take half a day off because it’s an hour away. He also has to do most of the dishes, the laundry….he’s really an amazing man. Luckily we found a housekeeper and she will be coming in starting next Monday once a month to do the major cleaning. We still haven’t finished getting all our moving in stuff straight and we have been here 2 months. I simply cannot do it. We are both so overwhelmed it’s crazy. He’s being made to feel like he’s having to choose between me and work. That’s going to make him hate his job real quick, he’s already talking about looking for another one. I’m freaking out about that. He has to feel better about things. I have to take some of this off of him and the only way I can do that is to remove some of the responsibility from him. Getting rides to doctor’s appointments is not a solution. I cannot hear well enough in the appointment to handle it alone, he has to be there to help me answer questions, and to help me understand what the doctor says. He also needs to be there in case I crash. I often have vertigo attacks due to the stress that comes with these appointments, I would need someone there knows how to deal with that.

I’ve canceled all the pain management appointments, I’ll consider going to another clinic if I can find one closer to us that has appointments at times that won’t take Stuart away from work so much. I do admit I’m having more migraines this month since the occipital block wore off, but it’s not worth the stress of going an hour in one direction to their office. It’s a hard trip, and I don’t really like the doctor. I see my psychiatrist next week, we are normally able to get a late afternoon appointment with her, so Stuart doesn’t miss work, but if I get approved for the Ketamine I’m not sure if I’d have to go in earlier, so that would have to be part of that decision now. I’m changing my primary care physician to a doctor that is very close to me, so I it will be very easy to get there. I don’t think I need to go to a kidney doctor any more, so I’m canceling that. I will keep seeing my migraine doctor, I don’t see her but every 3 months, so it’s not that bad. And if Stuart can’t go, my neighbor said she would take me. I know I can hear her, and I think she will listen to me. A lot of doctors don’t listen without Stuart backing me up, there is definitely a prejudice against women in the medical industry, we have really noticed a marked difference in how doctors treat me when I’m alone and how they treat me when Stuart is there to back up what I’m saying.

There has just been so much going on and I just can’t see where there has been that much improvement. Yes, I do see some improvement, but when you are doing so many things how can you know which one is the one working? I started the Aimovig 4 months ago, they say it takes about 3 months before you can judge if it’s working, well that was the same month I got the occipital block, so I don’t know if the shot or the block was the one working. I think it’s a wise idea to find out which one is helping before I keep spending money on both. I’m also not fond of the idea of continually putting steroids into my body after having avascular necrosis. They told me that it was most likely caused by steroid use and that it’s possible to get it in other joints; I don’t want any other bones to die, having one hip replacement is enough. However, if the occipital block is the one that worked then they can cauterize the nerve and that could last a couple of years. But they want to do an occipital block on the other side first and then they plan on doing injections in my back to help the muscles that won’t stop firing….that’s a lot of steroid injections. I think seeing another pain specialist to get another opinion might be a good idea anyway. I think my back might need some myofascial release. I found a pain clinic that does that kind of thing too, they are only 30 mins away, well at least I’m getting closer…sigh. First I’m taking at least a month off from that kind of stuff. Next I’m going through my medications and deciding which meds I know are working and which ones I’m taking because I think they may be doing something and I’ve been afraid to stop just in case. I’m tired of taking things that I’m not positive are helping. Lots of decisions to be made.

I do have some exciting things I’ve been doing and coming up, including a chronic pain group I’ve been attending and a migraine retreat I’m going to in April, I’ll write about those soon, I promise, but this is getting long. So I’m going to close and get this posted before I decide it isn’t worth posting and scrap it.

Have any of you decided to just take a break from some treatments? I’d love to hear your experience.

When I Can’t Take Abortive Migraine Medication

Image by Seksak Kerdkanno from Pixabay

I have chronic migraines. You are defined as having chronic migraines when you have more than 14 migraines a month, I have more than 20. In the last month I’ve had 2 migraine free days. Due to the risk of Medication Overuse Headaches (you can read more about MOH here), and the possibility of some nasty side effects, you are only allowed to take abortive medications twice a week or a maximum of 10 per month. Abortive (also referred to as acute or rescue) medications are medications you take at the time of the migraine to stop it, they are best used at the first signs of a migraine. Abortive medications are analgesics (such as NSAIDS, Excedrin Migraine…), triptans, ergotamines, and on rare occasions opioids.

This week has been a rough one, I’ve had some intense migraines and I’d already used my abortive medications for the week. What’s a girl to do?

Suffer? Yeah, maybe, but I have found a few things that do help a little and sometimes they even get me back to my smiling self. 🙂 Like most migraine treatments these work best if you use them early, when the pain gets really bad, it takes much more to get it under control. (so it’s really hard when you wake up with a whopper) Here’s a little list of things I’ve been using that seem to help me, just keep in mind that everyone is different these might not work for you, or, who knows, they might work better for you than they do for me.

  • caffeine – one of the first things I reach for now is caffeine. I don’t use a lot, but I am using more than I used to. I always keep my consumption under 200mg a day (going over can cause rebound headaches so you have to be careful about this treatment), but when I have a migraine a little jolt of caffeine can help. I normally take it in conjunction with other things. (my usual dosage is about 41 mg in a 16oz drink)
  • ginger – Ginger has been shown to help stop a migraine. There have been a few studies showing how ginger helps with migraines, the one that impressed me the most was one that was held in an ER, the patients that came in with migraines were either given an NSAID with ginger or the NSAID alone and the group that were given ginger were more likely to find relief across the board. There is also a study that showed that ginger was as effective as sumatriptan (Imatrex) for some people. I’m not one of those people, but I do think it helps. So I take 500 mg of ginger now at the first sign of a migraine. Here are some links to studies about ginger Ginger and migraine treatment, Ginger efficacy compared to sumatriptan, Feverfew and ginger for migraine.
  • I decided to try a homeopathic remedy, I honestly didn’t think it would do anything, but it didn’t cost much so I thought I’d give it a go. Much to my surprise, it helps. It’s not a miracle, it rarely takes it all away, but it often lessens it enough that I can function. (I think it’s worth noting that I’ve never taken this without either caffeine or ginger) It’s called Hyland’s Migraine Headache Relief. It contains Glonoinum, Belladonna, Gelsemium, Nux Vomica, Iris Versiolor, and Sanguinaria Canadensis. I found it at Sprouts, but when I did an online search it looks like you can find it all over. The dosage is 1 or 2 tablets every 4 hours. You let them dissolve on your tongue, I like this a lot. If I happen to not have water I can still take this, and it doesn’t taste nasty. I always start with 2, and in 4 hours if I need more I then decide if I need 1 or 2 at that dose. I have noticed no side effects from this so far. I bought this product with my own money, I am not receiving anything from the company, they know nothing of me, this is not an official review or anything like that.) undefined
  • medical marijuana – I’m going to write a post about this soon, probably the next post I put out, but I thought I’d put a little blurb here that I do use medical marijuana to help with my migraines. It is not a miracle, but it does help. However, it is a lot of trial and error to find what works for you.
  • ice or heat – my head is variable, it sometimes feels relief from an ice pack, sometimes from heat, so I try both. Sometimes I’m afraid to try either for fear of making it worse. But normally I’ll try ice if my pain is mainly on the top of my head, if my neck is the main culprit I’ll use heat, if my forehead is where the pain originates I kind of leave it. I have an IceKap, I have found it works well when my head wants ice, but it’s heavy and my neck doesn’t like that so I don’t use it much. However, if you are someone who needs ice for your migraine, this cap is great for getting your head cold and it stays in place. It presses on my glasses though, I don’t like that, I don’t like to take my glasses off when I have a migraine because of the vertigo. (again, I bought the IceKap, no one knows I’m saying anything about it. I’m not getting anything.)
  • Epsom Salt Bath – I can’t do this all the time because of vertigo and other times when I’m hurting too much I just can’t get in the tub, but when I have a moderate headache a nice soak in a tub with Epsom Salts can really help. Add the scent of lavender or mint and it can really be relaxing, and I normally hate scents, but I really liked the lavender Epsom salts I tried recently. It wasn’t a fake smell, or too over powering. It was very relaxing. That’s a good thing.
  • That’s about it from me, other people really like essential oils, but for the most part scents trigger migraines for me, none have relieved them. I do find peppermint a little helpful sometimes, but other times it makes me nauseous, so I don’t like to risk it. Lemon is about the only smell that never makes me sick. Oh…Sometimes if I eat something spicy it will lessen the pain in my head for little while, but it doesn’t last. If you can trigger an ice cream headache, it’s supposed to stop a migraine, but dang! That’s something I don’t really want to try. Oh who am I kidding, I have tried, you know it’s hard to trigger one of those when you are trying to do it. I still can’t tell you if it works, and when I think about it I really don’t want to cause myself that much pain.
  • Note that I didn’t include things like massage, acupuncture…. because I consider those more preventative and today I’m focusing on abortive treatments. Also I’m focusing on things I can do for myself without help.

How do you treat your migraines when you can’t take your meds,?

Did I share anything that you found interesting?

How has your week been? I’m thrilled to say today I don’t have a migraine! The exact opposite of every other day this week. Yay.

May we all have a pleasant weekend. We are finally getting the rest of our furniture this weekend. Woot, Woot!

Ready for 2020?!

Image by Gerd Altmann from Pixabay

I’m baaaack! Whew, I didn’t mean to be gone so long. I actually did write a post during my absence, but, silly me, I forgot to hit “Publish” and it’s out of date now.

Let’s see what was going on when last I left you?

We were getting ready to move into our house. Check, that happened; there are still plenty of boxes and there is actually more to move from Stuart’s dad’s house, but we are in OUR house and it feels good, even if I’m extremely exhausted and flaring.

I had hopes that the nerve block injection I had in my neck was working, but it didn’t. I had a couple of good days, but I think that may have just been good days because it sure didn’t last. I saw the pain doctor again and I had an occipital nerve block on the right side on December 30th to hopefully help with my migraines. I actually do think this one is working. I have had migraines since the injection, but they did not start in that area. That’s great, because a LOT of my migraines do start in that area. It hasn’t been long, but so far I’m hopeful. I also had an x-ray of the thoracic region of my back and it showed no damage; I have to say I was surprised. I have so much pain in that area, and it feels like it comes from the bone. I’m happy I don’t have problems there, but I do wish I knew what the heck is wrong. It’s really hard when you can’t have an MRI. She also wants me to have a nerve conduction study to see what may be causing my arms to go to sleep since the nerve block in my neck didn’t help. I’m not looking forward to that test, it’s not very comfortable (to say the least), but hopefully it will provide some answers.

Right after my last post I had a severe gastritis attack accompanied by severe diarrhea (literally crapping my pants over and over. yes, I know, TMI). I had my yearly physical right after that and my doctor thinks I may also have diverticulitis. I’ve been referred to a gastroenterologist, but haven’t heard from them yet. The day of our move I woke to the all too familiar feeling of gnawing pain in my stomach, luckily it didn’t escalate to a severe gastritis attack, but it was a very uncomfortable day.

I can’t say much about the holidays because it is just a blur. I know they happened because of all the decorations in stores and specials on TV, but boy oh boy we sure didn’t have time to celebrate anything.

So now I am ready to say goodbye to 2019, and face 2020 with renewed hope and wonder. I plan to take each day as it comes, have more fun, and take things less seriously. I’m not going to make up a bunch of resolutions I probably won’t be able to keep, but I do want to face this year feeling a bit renewed. After all, I just moved into a new house, my life is drastically changing. I’m going to be changing places I normally do my shopping and even some doctors…because we now live on the other side of town. So much is changing, there is no need for me to make resolutions, things are just going to change naturally. However, I do plan to make some short term changes throughout the year. There are some things I want to try so I plan on doing some 30 day challenges for myself, perhaps some of them will last longer, I’m sure some won’t last the whole 30 days. For example, for 30 days I want to eat vegetarian, to meditate daily, to journal daily, to draw daily, to not eat out, to not buy anything new except food… Well that’s 6 months right there! I’m not going to be hard on myself if I can’t keep to these things, but I feel like if I put a short time frame on it then I can just try it out and see if it’s for me, who knows it may be something I just love and will keep doing forever, or it may be something I hate and quit in a week, no pressure.

I think that’s enough to get things updated and to get me writing again. It has been one crazy busy month! Not only have we been moving, during the holidays, I had 1-3 doctor’s appointments each week. It’s time to slow down and get this year started.

Happy New Year everyone! May this year be filled with love and happiness for you all.

A Midi-Me Update – Injections, Psych meds, Houses…Stress

Photo by Thomas Plets on Pexels.com

A little bit of a catch-up as to what’s going on in my little corner of the world, besides, if I don’t write it down, how will I ever remember?

I got the results from the x-rays of my neck, it basically says I have Degenerative cervical spondylosis (often referred to as degenerative arthritis) with narrowing of C5-C6, retrolisthesis (the posterior or backward slippage of a vertebra) of C5 on C6, and bilateral neural foraminal encroachment (spinal nerve root is compressed on both sides) at this same level more extensive on the left.

I went in on Monday and got my injection. They did the injection between C7 and T1, a little to the right, because my right arm is the one that bothers me the most. When the nurse took me back to the procedure room I told her how nervous I was because of my hearing loss and Stuart couldn’t be back there. Since losing my hearing it’s very hard to have procedures BEHIND me without Stuart there to help me. She reassured me over and over that they would take good care of me. I had her tell me everything they would be doing, and I felt a bit more at ease. The doctor came in, this is the first time I met him, I only saw his assistant before, he asked if I could hear him at all and I tole him Yes, but after I lie down and he is behind me it will be garbled and I will have a very hard time. He seemed to understand. Obviously he didn’t, because it was horrible. He talked with his assistant the entire time, it sounded like just chit-chat but I can’t be sure because I couldn’t understand anything that was being said. I had no idea when he spoke to me. I didn’t know when he was going to stick me, nothing. I was terrified he was telling me to be very still or to move or something and I was not able to understand. When it was over I didn’t even know. I was confused if it was time for me to get up. When I sat up the nurse was there and asked if I was alright and I said, “I do not feel taken care of” and I burst into tears. I explained what happened and she said how sorry she was and that it should not have happened that way. I got myself together and went back to my room to get my IV out and leave. The doctor came out and made sure to catch me before I left and apologized. He was very nice and told me that he talks because it calms him, he was very sorry and it will never happen again. We will make sure we have a better way to communicate. I left feeling much better, and I was proud of myself for speaking up. In the past I would have held it in and gotten out of there as fast as I could and simply not gone back. Now they were educated and I had a much better experience.

Unfortunately, the shot hasn’t worked. I’ve seen no evidence of any change. We will have to try something else. I go back the day before Thanksgiving for a follow up, we’ll discuss the next steps then.

Now for an update on the psych side of things. I still haven’t gotten approval from my insurance company for the ketamine. They came back saying I needed to try TMS (Transcranial Magnetic Stimulation) first, so my doctor’s office had to send back explaining that I can’t do that because of my cochlear implants. Of course, it takes the insurance company forever to come back with an answer. Geez. On the up side though, the new antidepressant she put me on, Fetzima, is doing some good. I’m not back to my normal self, but I’m not feeling like I’m in the deepest darkest depths of despair either. I saw my psychiatrist on Wednesday and we increased the dosage, I’m hoping it will bring me up a bit more. She told me to watch out for side effects, as it can cause headaches. I asked her, “How would I know?” I was being kind of serious, like, would they be different than this constant thing I have now? or what? But she said, “I guess you wouldn’t.” Well damn. Now how do I know if my migraine is actually getting better but this drug is causing me to have a headache?

We have been constantly looking for houses, trying our best to find just the right house for us before our lease is up. We can move into Stuart’s father’s house, but that means we’ll need to move twice. We thought about renovating the family home, but we don’t really want to live there forever, so we are still searching for a place to call our own. Crossing fingers and toes that a house we saw this week will turn out to be the one. We might just have a very magical Christmas.

Speaking of holidays, is there anything more stressful than trying to organize a holiday meal with people won’t tell you what they will and will not eat until you tell them what you are making and then they just say, “Oh I can’t eat that”, or “The kids won’t eat that”? Ugh! I used to really want to have a family holiday, but boy oh boy is it a pain in the butt. They can’t afford to do much, so we thought we’d do everything, but I couldn’t get anyone to tell me what they would eat. I swear you just can’t please some people. So they are bringing food too, we will have way too much food for 7 people, about half of it, I can’t eat. When we lived in NC we used to have an “orphans” Thanksgiving. We’d have a big meal with a bunch of people who had no where to go for the holiday. It was always so much fun. We’d often play games after dinner and talk for hours. I don’t know anyone like that here, of course, I don’t know many people here.

To make things much less stressful for Thanksgiving I ordered our meal from Wholefoods. I’m adding another vegetable, a desert, and some cookies. That’s all the cooking I’m going to do, and I love baking, so that’s not stressful. I also make my cookies in batches, I simply freeze the dough and cook it later. Also, if I can’t do it, it’s not a big deal, the meal is taken care of, and the other half of the family is bringing a pie, so everything is covered. I find, the trick to surviving the holidays when you are chronically ill is to have all your bases covered in case you can’t do the things you want to get done. Don’t over extend yourself. Rest often and don’t eat too much junk. Try to keep your normal schedule if you can. You might want to increase some of your supplements. I increase my vitamin C, D, and Zinc during the winter.

How do you survive the holidays? Any tips you want to share?

Free ebook version of an Award Winning Cookbook Giveaway! November 12th

Just click on the image to take you to Amazon

I’m sharing this post by my friend over at See Janye Run. I’m so excited about this cookbook giveaway to take place on Tuesday, November 12th,  and thought you might be too! Jayne just told me they started the giveaway a little early so I just got my copy!  Be sure to head over to Amazon and snag a copy before it’s too late! 

All the details are in her post..

https://seejaynerun.com/2019/11/10/november-12th-only-free-award-winning-ebook-cookbook-for-all-us-kindle-readers/comment-page-1/#comment-228

First Meeting

I met someone yesterday who touched my heart, she cleaned my house, but that isn’t what made her special.

Since I’ve been having this flare I haven’t been able to keep up with the house cleaning so we decided to have someone come in to help out. I was looking on the Nextdoor site and saw where a neighbor was asking about a cleaner for her home, several people answered her but one person’s comment struck me more than the rest so I messaged her and asked if she’d be interested in helping us out. Lucky for us, she said yes. That’s how we met Lennie.

After several texts back and forth we set up a date and she came over yesterday. When she came to the door I felt I would like her instantly, and within the first 5 minutes I knew I was right. Her smile lights up her face and she is genuinely warm and friendly. We have a sign in our front yard, I posted a picture of it on here before, it says things like “Love is Love”, “No Human Is Illegal”, “Science Is Real”…. This sign means a lot to me. It says a lot about what I believe in, and who I am. When Lennie came in she mentioned how much she loved our sign, she said she saw it and thought “These are mine kind of people.” I gave her a high five.

We chatted some as she went about her business. She knew from our messages about some of my health issues, but I didn’t know she had a few. Her illness was not supposed to be chronic, but it did have some long term complications. She really understands going through a long ordeal before being diagnosed.

The main thing I really wanted to write about was how she reacted to my hearing loss. When she found out I lost my hearing just a few years ago she first asked the same thing everyone else does, “Do you know sign language?” I wonder why that’s the first thing people ask? You know when you are not immersed in a language it’s hard to become fluent in it, especially at my age. Taking a class when you are fighting vertigo and migraines on a daily basis is almost impossible. Absorbing a foreign language while dealing with those? Well I haven’t been able to do it. But anyway, after we discussed all that, I promise I didn’t say anything rude, she asked me something no one else ever has: “Has losing your hearing been difficult?”

My first instinct was to say “No”, and just brush it off. I started to say that I thought it was more difficult for Stuart, but then I stopped. I looked at her and felt tears well up in my eyes, “Yes, yes, it has been very difficult.”

I was taken aback by the fact that she asked, and genuinely seemed to care. No one has ever asked me that before. I’ve never gotten the impression that anyone has felt that it has been very difficult. I think some people see that I have some challenges, but I don’t think they understand how difficult it is, and I think it would make them uncomfortable if they knew. I think a lot of people think my cochlear implants “fixed” my hearing loss, and others think I’m really good at handling it. Truth of the matter is, it’s extremely difficult, my CIs are far from perfect, and I think I handle it pretty well but that doesn’t mean I always understand what the heck you’re saying or that it’s any less difficult.

Meeting Lennie made me realize that I can still make connections with people in the “real world”. It may still be difficult to nurture a friendship when I can’t drive and may often have to cancel things and I can’t hear in many situations…but Lennie made me want to try.

You never know what kind of mark you may leave on a person, try to make that mark a good one. Look what Lennie has done for me.

(I will try to post about some of the difficulties I have dealing with hearing loss soon.)