Trying to write

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

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?

Losing a loved one during a pandemic

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.