Update – New Treatment Plan – New Devices

On By WendyIn Chronic Illness, Migraines7 Comments

I can’t believe it’s been a MONTH since I posted! The last time I posted I was having a very hard night, thank you all for supporting me and caring, it means the world, really.

I saw my neurologist/headache specialist a few weeks ago and we came up with a new treatment plan for my migraines. First I went in and had an occipital block on both sides, unfortunately it didn’t help. I was very hopeful it would since I had an occipital block on the right side in December and it seemed to help. That was disappointing.

I’ve tried one the new migraine medications for acute attacks, Ubrevly, and it helped as long as I took it early, if the pain is too far gone it didn’t help. So now I’m waiting on insurance approval to get a prescription for it.

Almost every rescue medication for the treatment of an acute migraine only works well if you take it within the first 30 minutes of an attack. When you have a status migraine, it doesn’t go away, so there is no way to catch it in the first 30 minutes. The only thing I can do is use it when the pain starts to increases when having a lower pain day, unfortunately that doesn’t always work.

After I get insurance approval I will be starting Vyepti, it is a CGRP blocker given by IV. Unlike the CGRP drugs that you take by shot every month (Aimovig, Anjovy, and Emgality) you may see a difference within the first week or so, instead of the months it takes with the aforementioned medications. I would get the IV treatment every 3 months, instead of giving myself a shot every month. I’m really hoping this will be a good preventative for me, but I’m afraid it won’t work since neither Emgality nor Aimovig worked.

I have been using the Nerivio device and it does help some, but it is another treatment that must be used in the first 30 minutes of an attack, so I’m only getting partial relief. From the Nerivio website: “Nerivio is a wireless non-invasive remote electrical stimulation wearable applied to the upper arm at the onset of migraine headache or aura. Nerivio induces an inherent pain inhibition brain mechanism, resulting in clinically significant pain relief. Nerivio is safe and well-tolerated.” (I plan to write a review of the Nerivio soon, I’ll give more information at that time. If you’d like to learn more about it check out their website here.

Just yesterday I received the Cefaly device. As described on their site, “Cefaly is an External Trigeminal Nerve Stimulation device (e-TNS) for migraine treatment. A self-adhesive electrode is placed on the forehead and the Cefaly device is magnetically connected to this electrode.” I’ve only used it twice so far and it helped. I’m actually feeling better today than I have in a long time. There are 3 different Cefaly devices, one is for the treatment of Acute Migraines, one is for prevention, and one is dual, it does both. I have the Dual Cefaly device. I’ve only used it in the Accute mode so far, hopefully I will be able to use it as a preventative once this status migraine is gone. I will also do a review on the Cefaly after I use it for a while so I can give more information. You can read more about the Cefaly device on their website.

I was so surprised and pleased when I wrote to my doctor and told her that the occipital blocks hadn’t worked and she wrote me back and said she was sorry she didn’t know how to help break this cycle. She is normally very abrasive to me when I contact her outside or an appointment. It’s like she has been two different people, one in the office, and one in the portal. She surprised me, in a good way. I do think she cares, I just think she has too many patients, and doesn’t know how to deal with patients when they are not responding to treatment. Stuart contacted another migraine specialist here, but she isn’t taking new patients for the next 6 months because a colleague is out and she is covering for both of them. I’ll make that decision as time goes on.

I’m so tried of being in pain and having severe light sensitivity. Which reminds me, I also got the Allay lamp. This light helps with light sensitivity. I’ll be reviewing this lamp soon, in the meantime you can read more about it here.

All of the devices mentioned here have some pros and cons, I’ll address those more in my follow-up posts reviewing them. I’m so lucky that I can try these devices, thanks to my wonderful father-in-law’s birthday gift. Since Stuart was laid off I wouldn’t have felt comfortable getting these devices if Dad hadn’t given me that money.

What’s the cost of these devices? The Nerivio is $99 per month for 12 uses, you get a new one each time you refill. The Ceflay is a one time cost for the device, it varies depending on which device you get, but the electrodes do need to be replaced regularly. The Allay lamp is a one time cost of $149 at the time of this blog post.

I purchased all of these devices with my own money, I am not an affiliate and have not been asked to review these items, nor have I received anything from the manufacturers.

Late Night Rambling

On By WendyIn Chronic Illness, Migraines, Pain15 Comments
Me, manipulated in the #photolab app

It’s 1:29am and I can’t sleep. I hurt all over, and I’ve been having vertigo and migraines with all the symptoms that go with it.

I’m posting from my phone so who knows how this will turn out. I doubt I’ll be able to edit it very well. I apologise for errors ahead of time.

It’s been over 2 months now since Stuart got laid off, I’m not tired of him, but I do miss my private time. However, I’ve been having such an increase in symptoms it’s probably best that I’m not alone all that much.

I’m tired. So very tired.

I’ve had a non-stop migraine for almost two months now and I, at least partially, blame my doctor. I had a tele-health appointment with her the beginning of May, right when we were increasing my Spravato treatments back up to two a week and I had every reason to believe that my migraines would get better again. They didn’t, they got worse, and I have no rescue medication that works. I got in touch with her less than two weeks after my appointment to ask for help and she said I need another appointment, so I’ve been waiting two month! The soonest they could get me in was July 17th. I’m finally going to see her next Friday. Now I have a Status Migraine, that’s a bitch to treat. I don’t know if this would have happened anyway, but I feel if I’m in this kind of situation she needs to take care of her patient, so I’m searching for a new doctor. I’m tired of her never being available when I need her.

I had the freakiest, thing happen to me earlier. I was sitting on the toilet and it felt like the toilet started moving under me. Normally when I have vertigo it feels like I’m moving, or the whole room is swaying/rocking..ect. it has never felt like the seat under me is wiggling. Soon I did feel like I was moving, well, it felt like my brain was. It still does just a little, much more if I move my head. I’m so grateful I have an amazing husband who will help me off the toilet and to the bed when things like this happen.

When I got to the bed I could literally feel my brain trying to spin in my head. My eyes weren’t all the way spinning, my vision was a little off, but not like it can be. I rarely have that sensation any more, thank goodness, it’s really hard not to throw up when you see the world spinning around you. It’s hard enough as it is. Right now, When I move my head it feel as if my brain rotates and moves around in my head. My internal gyroscope doesn’t work. My vision spins for a few seconds, and I can feel bile coming up my throat. The only hope for sleep is to lie perfectly still and hope I don’t turn over in my sleep until this has passed.

Now it’s after 2am, I don’t know if the pain will allow me to sleep, but I’m going to try.

Trying to write

On By WendyIn Chronic Illness15 Comments

I’ve started countless posts but, like so much in life now, I haven’t finished any. Do I write about me? How my treatments aren’t working as well as they were in the beginning? How my migraines and vertigo have once again taken over my life? or do I write about the travesties that are going on in this country? I’ve never used my blog as a political voice, I never want anyone to feel excluded or uncomfortable here, but I also feel so compelled to shout from the rooftops that I demand change! I was at the point recently that I simply no longer wanted to live in a world where people treated each other the way we do here. On Juneteenth we celebrated the 155th anniversary of the freedom of the last slaves in the United States. 155 years and racism is still rampant. Our leaders should be bringing us together, instead there is fuel being thrown on the fires.

View of the Bighorn Fire from my home on June 19th, 2020

It doesn’t help that each day I look outside and literally see fire. Normally when I need to escape from the stress of the world I retreat to nature, it calms me, but where I live we are in the midst of a natural disaster. A fire, named The Bighorn Fire, started by lightening on June 5th in the Catalina Mountains surrounding Tucson has burned over 58,500 acres so far and it’s 19% contained. We have an air quality advisory because of the smoke. The masks might help in more ways than one huh?

Speaking of masks, our mayor has issued an ordinance requiring everyone over the age of two to wear a mask when in public (there are a few exemptions) if you do not wear a mask you can be fined or be required to do community service. This is in response to the extreme jump in the number of COVID-19 cases Arizona has been experiencing since we reopened. I applaud her bravery for this, I wish our state, and national, leaders would take such an initiative. I feel it’s my Civic and Human duty to wear a mask. I wear a mask not to protect ME. I wear a mask to protect YOU! Is this political? I don’t think so. This is a health issue. We need to take care of each other. Wearing a mask is to prevent the spread of the virus when you are asymptomatic. Be kind to your fellow human, wear a mask. The life you save may be someone you love.

I think about being here, and talking with you, my friends. I think about sharing my thoughts, my fears, my pain, my dreams. June is Migraine and Headache Awareness Month. Yesterday was Shades for Migraines Day. I was so proud of myself that I at least got a post on Facebook and Instagram with a photo of me and Stuart in our “Shades”, but I had a lot of post planned for this month, they didn’t happen. So many other things happened this month. My migraines are back to being daily. I haven’t had a break in days other than the few hours I get when I go in for treatment, but it no longer last. I still have lots to say on this subject and just because the month is going to end doesn’t mean I’m going to stop being an advocate. I will be posting much more about migraine. I have a lot of information to share, a lot of promise for many people, a lot of hope. Oh, and I will be seeing my doctor in about 3 weeks, so cross your fingers we can get some kind of rescue medication for me. As I said a lot of hope out there. And that’s how I will close for the day…..with hope.

#shadesformigraine #mham

Control your Stress & Anxiety: 6 Ways to Meditate for People Who Can’t “Meditate”

On By WendyIn Chronic Illness3 Comments

During these unsettling and uncertain times my friends, Judy and Peggy, are sharing some posts for our mental and physical well-being.
I hope you enjoy.

CURIOUS to the MAX

“Meditation gets you out of your thinking into the present moment by focusing your attention to your sense perceptions (sight, sound, touch, etc) with 100% focus.”

Yay. Sure. 100%.  When I meditate it’s 50%-50% at best.  My monkey mind swings from trees with great abandon, my thoughts rambling, rumbling and wildly roaming.

So!  Why meditate?

Meditation has been rigorously scientifically studied and it’s shown to literally change the brain.  A regular meditation practice helps significantly with depression and anxiety, meditation has been shown to help with anti-aging, fighting infections, contributing to a sense of control and combating feelings of loneliness.

Nearly anything can be turned into a meditative practice as long as you focus on leaving your “head” and experience the world through your senses.(Sorry – Television, video games and reading don’t count as meditation because they simply replace our own thoughts with more stimulating ones.)

When the stress…

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A Rough Patch

On By WendyIn Chronic Illness21 Comments

Writing has been harder than normal. I think about it every day, things I want to post about that aren’t about me, then something happens in my life and, well, I just haven’t been able to get it together enough to write informative posts, I haven’t been able to write much of anything except in my gratitude journal and migraine diary. So here’s another post all about what’s going on what me, it’s a big change from a couple of months ago.

Depression ~ As you may recall, the Spravato treatments were doing amazingly well at treating my depression and migraines (depression was gone, and migraines were cut almost in half), then we cut the dose and I didn’t respond as well, so we increased it again a couple of weeks ago. My response to the increase hasn’t been as expected. I’m not feeling better. My depression isn’t as bad as it was before starting treatment, I still think I’m handling things remarkably well considering how much has been thrown at me recently, but I can’t lie and say I feel like I did. The depression isn’t gone, but it’s not all consuming, I’m very grateful for that. Unfortunately, my migraines have not responded to the treatment at all. They have increased back to almost daily, and the intensity has increased too. Most people would say, no wonder I’m more depressed, but as I noticed before, sadness and depression are different. Could this tip me into depression, or should I just be sad? Should this medication still be working as well as it was, or should I be feeling this little bit of depression? I don’t know.

Bad Trip ~ It may not matter anyway. I had a treatment on Tuesday and I had a bad reaction, or I guess you could say I had a bad “trip”. I haven’t dissociated during a treatment before. Normally, I only feel a bit drunk/high, in the first 15 minutes or so I can feel a bit more intense but I normally just go with it, I’ll relax and meditate, or I’ll giggle with Stuart, or I might even try to read, it all depends on how it makes me feel, but I always know where I am and what I’m doing and I’ve never felt bad. This last treatment was totally different! Within the first few minutes I started feeling hot. I was dizzy. I didn’t want to be touched. I felt sick. Things started to go weird. I told Stuart I was never doing this again. Suddenly I wasn’t in the room we were in. It is very hard to explain, and I can’t remember it all. I always knew Stuart was there but he didn’t always look like Stuart. I kept telling him I was dead. I wasn’t afraid of that, it was just a fact. It was the only way my mind could explain why things were do different. He asked if I was dead then how was he there, but I just kept telling him, “I’m dead”. Then I started throwing up. I knew I threw up, but I don’t remember the first time. Things started to come back and I was in the room again. I was lying on the couch and Stuart was sitting on the floor next to me, holding me and taking care of me. We kept telling each other how much we love each other during this whole thing. I always knew he would be there. It took a long time for me to totally recover. When I went home I was still very nauseous and felt awful. Stuart said I was having nystagmus during it, and I was having severe disequilibrum for a while, so we are wondering if I was having a Meniere’s attack at the same time. The way my body felt recovering was about the same, but no one knows. My doctor decided I should take a week off from treatments, so I go back on Tuesday. I’d lie if I said I’m not nervous.

PTSD ~ I fell last week. I was walking across my living room on my way out, kind of rushing, and tripped. BAM! I went down hard! We have tile floors, where I fell there is a rug, but there is no padding. It hurt so bad I thought I might have shattered my knee cap, and the pain in my artificial hip scared me, but all I did was scrape my knee really bad and I have a few bruises that are still coming up. I think the pain was increased by the fear that what happened last time Stuart was laid off was going to happen again. Last time I hurt my hip and it didn’t get better and that’s when we found out I had avascular necrosis. I ended up barely being able to walk for months before my hip replacement. Anyway, the PTSD from all that just spiraled. I was back there. I’m okay about it now, and my knee is healing. I’m being gentle with myself.

Migraines ~ When I had my virtual visit with my migraine doctor in early May I was increasing the Spravato again and thought I was doing pretty well. I don’t have a rescue medication that is working, so she gave me one of the new rescues, Ubrelvy, to try. I didn’t respond to it. I sent her a detailed message about things, and she said I need another visit. First appointment I could be squeezed into is on July 17th. So that means I go until then with NO rescue medication. I do have this new device called Nerivio, (that I planned on posting about), that is helping, but you can only use it 12 times a month and you have to catch the migraine within 30 minutes or it does not work. I’m having a lot more than 12 migraines a month, and sometimes it’s hard to tell when my migraines actually start since I have a chronic daily headache. I have gotten so used to living with that pain that I try hard to ignore it. On good days my baseline is around a 3, but recently it’s around a 5, so it’s hard to tell if that 5 is migraine starting or my baseline. I can only tell when my light and sound sensitivity gets worse, or I get nauseous…or have many of the other symptoms. If I have an aura, I can catch it, but that doesn’t happen all that often. I’m really hate that there are so few headache specialist that you can’t get in to see them when you really need it. As much as I’m thrilled that there have been a new class of migraine medications released recently, I hate there are still so few options out there. Oops, I started to jump on my soap box, hopefully I will be able to write a whole post for that! hahaha

Just Stuff~ I’m still staying home even though my state has pretty much opened up. I still go over and visit my neighbor on her patio at a safe distance. We do have dinner with Stuart’s dad once a week, I go when I’m able, always keeping social distancing. (Stuart sees him more often) We plan to do ribs and the fixin’s tomorrow. I hope I can go, or Stuart and Dad will have a lot of food. I’ve actually increased my precautions since they opened up the state, there is way too much going around. We did go for a drive through the Saguaro National Forest, that was beautiful.

Saguaro cactus blooming Spring 2020, East Saguaro National Forest, Tucson, AZ (unfiltered)

What’s new with you? I’d really like to know.

A Series Of Unfortunate Events

On By WendyIn Chronic Illness23 Comments

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.

URevolution Featured Article

On By WendyIn Chronic Illness19 Comments

I’m so excited and honored to announce that one of my posts has been published in URevolution – The chronic illness and disability magazine.

I’m so impressed with the magazine and everything URevolution does and stands for, please go over and check them out and read or reread my article Losing a Loved One From Alzheimer’s Disease Druing Cornonavirus Pandemic and let me know what you think.

My Normalcy During Pandemic 2020

On By WendyIn Chronic Illness8 Comments
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?

Losing a loved one during a pandemic

On By WendyIn Chronic Illness24 Comments
Image by Valerija Bieliakė from Pixabay

My mother in law passed away night before last. When you hear about people dying right now, you think about The Virus, but there is a lot of death going on from other causes, sounds a little odd, but life goes on. Babies are being born, and people are dying, and we aren’t able to congregate during these times like we normally are, and that sucks.

Margaret has been living in a long term care facility because of advance Alzheimer’s for over 2 years. When they locked it down last month and no longer allowed my father in law in she started to get worse. We’ll never know how much longer she would have lasted, but we are thinking she didn’t fare well without him. Right until the end she always knew who he was. They warned him that he would be one of the first people she forgot because they had only been married about 7 years when this started, but he spent every day with her, and she never forgot. She didn’t always know his name, and she didn’t always know he was her husband, but she knew he was her love. She lit up when he came in the room, she reached for his kisses when he had to leave. I’m so very glad they found each other, I only wish they had more time together. I’ve not seen two people more in love.

They allowed him in 3 days before she passed, so he was with her at the end. I’ll be forever grateful for that. He was the only family member who got to say goodbye. She has 3 children and grandchildren, they live across the country and could not travel during this time of isolation, but it would not have mattered, they wouldn’t have been allowed in.

There will be no real service at this time. 10 people are allowed at her internment, my father in law, her caregiver, and a couple of her life long friends, all are high risk, so even this will be will be strained. When the isolation is over there will be a memorial service, but that is so different. Right now we can’t come together to grieve. We can’t hold one another. It’s like it’s not real. Nothing has changed. The only lives that have changed are Dad’s, and her caregiver’s. The most I’ve cried is while I’ve been writing this. There has been a major death in my family and it’s like nothing happened. I can’t even hug Dad, he has self isolated, and I don’t blame him, he is high risk, but I really need that hug too. I don’t know how to help. He doesn’t show much of that kind of emotion, so I don’t know how he’s doing really. He says he’s fine. I worry. She was his life. But that’s why we moved here, only how do we help when we can’t spend time with him?

Oh how I wish I could have known Margaret better, but the little I knew her, I adored her. She was an amazing woman! She was a trailblazer! She worked with computers long before it was something women did (some amazing stories there), she did amazing volunteer work, loved to hike, traveled the world, collected beautiful art, had an unwavering faith, raised 3 successful children, and was the kindest woman you could meet. and that’s just what I know about her!

She will be terribly missed.

We love you Margaret.

Light Switch Flipped

On By WendyIn Mental Health5 Comments
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.