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You’re a Mean One, Mr. Grinch…

Unfortunately, it’s not just him.

Some people confound me sometimes/oftentimes/almost always.

What makes them choose unkind coldness when they could be joyous and uplifting? Why do people gaslight and ridicule emotions- the very thing that makes us human?

I have a theory. I think that sometimes people are purposely demeaning in order to destroy other’s peace of mind. Maybe they get joy out of it. Maybe they’re coached to do so.

Either way, it’s toxic and not a very productive way to live.

When one adds positions of responsibility and power to that sewage, you get a mind-numbing shit stew.

We have ONLY ONE JOB, really, as humans. BE KIND, above all.

Our other job in my opinion is to CALL OUT INJUSTICE when it is happening. Don’t let people abuse others. Don’t let them abuse YOU.

Abuse comes in many creative forms. Sometimes micro aggressions can be worse than outright battery.

What motivates your cruelty? Is it fear, power, racism, religion, politics, your childhood abuse?

Don’t bother answering. It isn’t for you- my mind rambles for ME.

You have to live with your karma. I will live with mine.





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Blogging as an Accidental Influencer in the Age of Covid

Once upon a time we could drive to spectacular locales and flash our uncovered smiles all over our blogs or social media.

That time is no longer.

We’re stuck in our houses- and if you’re a covid survivor, like I am- have extreme PTSD and anxiety about socializing, reaching out, the entirety of 2020- everything.

I’ve rediscovered this blog as a therapeutic way to reach out to people, especially those like me, who are shut in with their families and going stir crazy for life again… but unable to do so in this new circumstance we find ourselves in.

I am an accidental influencer… I have been since my daughter was born and I just started posting her photos on Instagram 6 years ago.

I accidentally fell pregnant with the child at age 45, long after most of my peers had stopped having their broods and looked forward to grandkids.

I didn’t know about hashtags and all that- honestly, I am still learning. I just saw that others were tagging the clothes and the things that their kids wore and thought that was ‘the new thing’. 23k plus Instagram followers later, I am still in a kind of confused shock.

At that time, I was a 40 something woman stuck in the house with a baby and reaching out- hoping to find others like me. I was hoping to share our experiences and I found so many like me, which was encouraging and comforting.

The most enjoyable part of being an influencer is not only the free stuff I am able to try out and review- without having to actually leave my home- but also being able to connect with others who are as isolated as we are.

While I am far more successful using my Instagram account as a vehicle for expressing myself and our daily lives, I’ve discovered other ways (which I am hoping to try out soon) to reach a broader influence.

Pinterest has launched a new IG type format, which I think may be a very interesting new facet in the world of social media sharing/influencing:


https://www.engadget.com/pinterest-launches-story-pins-influencers-130047393.html

I enjoy following other influencers as well, like Amy West, whose rise to influencer ‘stardom’ can be seen here:

https://intellifluence.com/blog/amy-west-influencer-spotlight

Personally, I don’t have the ambition to create that level of fabu-bloggery. I’m a loathsome GenX underachiever with very little time on my hands. 

I love ‘checking in’ in between homeschooling and raising my kid and caring for extended family- and staying alive in general.

It is fun glimpsing other people’s lives, even as a lurker. It’s inspiring reading what others have to share- without the social anxiety or the threat of disease… a way for those of us closet introverts to connect with others and grow.

We NEED more people out there with voices, so if you’re interested in becoming an ‘influencer’ as well, start a blog. Tweet. Write. Post on Instagram.

If you’re a Covid or other type of survivor, like I am- share your stories. We all need to feel a little less alone during these scary, sterile times.

We all have something to say and there are many out there, like me, who would love to read your stories.

I wish you all good health and safety during this absolutely mind-boggling horrorshow that is 2020.

Jess



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BACK IN QUARANTINE, EFF 2020- My New Normal

This is my new normal as a Covid long hauler, 6 months after contracting Covid.

They are discovering that this disease is a VASCULAR one, not a respiratory one, per the news this morning.

If you are also a covid survivor, consider joining the facebook group Survivor Corps for updates on long term health effects, newest findings, and just to share your stories with others going through the same nightmare.

We fell ill with Covid19 in March 2020.

Months later, I am still not 100%- and to add insult to injury, we were exposed AGAIN.

Right now, I am in the middle of the worst panic attack. We’re coughing, I have a sore throat- no fever, but apparently fevers only account for 7 percent (roughly) of symptoms.

Stay safe, everyone.

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Get 10% Rebounders & Accessories from Leapsandrebounds.com!

We are covid survivors- I am also a pulmonary embolism survivor.

I will write more about it in this blog at a later date, but I believe in this company.

The one in the pic was purchased by me, but the company was kind enough to send me a smaller one to try out for the RV with a stability bar and provide me with a discount code for everyone.

❤️In this post, you can get 10% off Rebounders from www.leapsandrebounds.com

✔️Follow their page at https://www.instagram.com/leapsandrebounds/
✔️use MissMaisie10 at checkout for your discount OR go to this link:
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💋🎈💗😘

View this post on Instagram

Homeschool and lockdown parents!!! Are your kids stuck and squirrely in the house? I know mine is. ❤️In this post, you can get 10% off Rebounders from @leapsandrebounds! ✔️Follow their page! ✔️use MissMaisie10 at checkout for your discount OR go to this link: ✔️https://leapsandrebounds.com/discount/MissMaisie10 💋🎈💗😘 I feel very strongly about this tool- we use it daily, hourly- to burn off steam during class (she counts, recites things while bouncing); clears up our lungs and helps us function, even though we’re #covid19 #longhaulers and recovered. I have #lupus, too, so I have to keep my immune system in top shape… just to keep up with an active 6 yr old girl at 51.

The company I buy my rebounders from leapsandrebounds.com, is offering a 10 percent off coupon for those of you who follow us and are going through the same stuff we are- or just want to burn calories or keep the kids from burning down the house. (it is also a good alternative to day drinking for those of us stuck 24/7 inside with every member of the family)

As #covidsurvivors, (which I will write about more in the blog missmaisieandme.com this week- I wasn’t ready to write about it for the longest time, but now I can’t stay silent. Too many I know are suffering or dying), a lot of our ongoing recovery I feel was due to rebounding- or jumping on this mini trampoline-

I learned about #rebounding after my #pulmonaryembolism in 2018 from a friend who worked at NASA. I BELIEVE IT SAVED MY LIFE BOTH TIMES.

#leapsandrebounds @oakmeadowschool #oakmeadowcurriculum @earthschooling #earthschooling #earthschooling1stgrade #earthschoolingcurriculum #waldorf1stgrade #homeschooling #homeschool1stgrade #waldorfhomeschool #steinerhomeschool #learnthroughplay #learningathome #homeschoolingbyheart #raisingthefuture #letthembelittle #homeschoollife #magicofchildhood #simplychildren #simplychildhood #unpluggedchildhood #childhoodunplugged #eclectichomeschoolers #outschool

A post shared by Miss Maisie & Mommy (@missmaisiebabyfashionista) on

View this post on Instagram

Homeschool and lockdown parents!!! Are your kids stuck and squirrely in the house? I know mine is. ❤️In this post, you can get 10% off Rebounders from @leapsandrebounds! ✔️Follow their page! ✔️use MissMaisie10 at checkout for your discount OR go to this link: ✔️https://leapsandrebounds.com/discount/MissMaisie10 💋🎈💗😘 I feel very strongly about this tool- we use it daily, hourly- to burn off steam during class (she counts, recites things while bouncing); clears up our lungs and helps us function, even though we’re #covid19 #longhaulers and recovered. I have #lupus, too, so I have to keep my immune system in top shape… just to keep up with an active 6 yr old girl at 51.

The company I buy my rebounders from leapsandrebounds.com, is offering a 10 percent off coupon for those of you who follow us and are going through the same stuff we are- or just want to burn calories or keep the kids from burning down the house. (it is also a good alternative to day drinking for those of us stuck 24/7 inside with every member of the family)

As #covidsurvivors, (which I will write about more in the blog missmaisieandme.com this week- I wasn’t ready to write about it for the longest time, but now I can’t stay silent. Too many I know are suffering or dying), a lot of our ongoing recovery I feel was due to rebounding- or jumping on this mini trampoline-

I learned about #rebounding after my #pulmonaryembolism in 2018 from a friend who worked at NASA. I BELIEVE IT SAVED MY LIFE BOTH TIMES.

#leapsandrebounds @oakmeadowschool #oakmeadowcurriculum @earthschooling #earthschooling #earthschooling1stgrade #earthschoolingcurriculum #waldorf1stgrade #homeschooling #homeschool1stgrade #waldorfhomeschool #steinerhomeschool #learnthroughplay #learningathome #homeschoolingbyheart #raisingthefuture #letthembelittle #homeschoollife #magicofchildhood #simplychildren #simplychildhood #unpluggedchildhood #childhoodunplugged #eclectichomeschoolers #outschool @outschool

A post shared by Miss Maisie & Mommy (@missmaisiebabyfashionista) on










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Updates on Last Hospital Visit/Pulmonary Embolisms

40091588_10156214664224024_2893247591590395904_o.jpg

at Kalamazoo Hospital- warts and all, no fuckin’ filter. 

Consolidating everything here:

I had a DaVinci Robotic hysterectomy on 12 July- they kept my ovaries (and doc says I may not go into menopause til near 60, as I apparently have abnormally young bits, yikes)- this surgery cured a lot of pain, but caused even worse. I almost died suddenly from blood clots to both lungs which were directly from the surgery, they surmise.

3 Weeks after my initial diagnosis and my embolisms on both sides are exactly the same as they were on August 8, but have not gotten new ones and they haven’t grown- had chest CT at Bronson last night.

Doc believes the first embolism may have occurred on July 27th, as I had an ‘attack’ that I thought was a newfound food allergy- but consistent with PEs.

However, it doesn’t sound like they’ve gotten any smaller, either…

I need to see a cardiologist at Bronson ASAP and have a Holter monitor done to find out what is going on, but they cannot do that In the ER.

They seem to think that my symptoms are because of this PE and I need to take it easy until the cardiologist fits me with a Holter- 

I feel very frustrated that I am basically supposed to be bedridden. The doctor said it was more important for me to hydrate than to move around at this point

Hospital cut me loose last night with a long acting beta blocker (metoprolol)- I am only supposed to take a fraction. He wants mr to start with half at bedtime, but I’ve played this bp med game before. I will do a quarter tonight.

I am waiting for the referral to go through with the cardiology department at Bronson in Kalamazoo, MI- which is 45 min from me, but a better hospital than the one around the corner.

Until then, I am basically supposed to act like a vegetable and keep hydrated.

My resting heart rate is higher daily, no matter what I do. This morning I woke up to it being 83 on avg while flat on back. I am power hydrating. My old avg per fitbit was 69-70. It goes up every day now this week. If I stand, it shoots up to 120-130 minimum.

Took over a dozen sticks, an u/s, and 1.5 hours to get a 20 port IV into me so I could have a CT. The head mosquito vascular nurse said I broke her streak. I’m a horribly terrible poke. LOL. Basically, I am the micropenis of the vein world. That’s a comforting thought. 

However, probably the nicest hospital experience I’ve had in years. Immediate, prompt care- real eye contact. Immediate info and they didn’t hold us hostage for 3 days and keep trying to drug me with hysterical Victorian woman meds.

There you have it.

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Still recovering or holding steady

Went to the ER again, this time in Kalamazoo. CT shows that both pulmonary embolisms have not grown, though they’ve not shrunk yet. I am having tachycardia (high heart rate), even if I walk across the room- so I am bedridden a lot, which is not cool.

I used to have to run or workout hard to get to 140 beats per minute- now I can do that walking down two flights of stairs to my kitchen. My resting heart rate is around 81 right now, which is INSANE for me.

I was pretty fit right up til 20 min before my clots (for someone with my genetic and age related crap). I ran, I walked, I was a fitbit freak. I don’t do drugs, I don’t smoke, I rarely drink- but when I do, it is with friends and family- I stopped eating carbs until my surgery. I felt amazing til the hysterectomy… ok, well, I AM a little reclusive by nature. I like just being with my kid and doing stuff quietly. I can’t even do that now.

I was right about the robot trepidation, I guess. They suspect that surgery caused this shite.

I am getting referred to a cardiologist to be put on a Holter monitor- and see a blood specialist about my genetic clotting disorder this week.

I am too stubborn to die. I refuse to leave my little girl. I’ve advocated for patients in the past- it is more difficult to advocate for yourself when you are infirm.

This morning I dreamed of my childhood bestie, Roger. He died about 6 yrs ago, suddenly. Had the same thing the actor John Ritter died from, just fell down and died at not even 40. He’d broken up with his boyfriend some time earlier, but had his room mate living with him at the time, who called the paramedics when he heard it happening.

I dreamed I was in Roger’s old bedroom from when we were teens on Red Arrow Highway in Watervliet. It was empty except for a waterbed and a little dog was hiding under the covers, and I pet it- it was a white small dog, not like the ones he owned that I remember. I had to go in his old closet to get a checkbook and get some of his bills paid- and his old closet was far deeper and larger than it had been. He was nowhere to be found, but I talked to the air and told him his bills were paid, then I saw another old friend (not Rog- and I presume still alive) whom I haven’t seen in over 2 decades- but none of my friends in the house could see him and asked me who the hell I was talking to…

The most comforting thing was seeing my other friend, who I believe is still alive, but lives abroad. It was so real. I put on a brave face to most people and really don’t get into the emotional aspects or fears associated with this crap, but it does scare the shit out of me.

People EXPECT me to be the tough bird, the crutch for them… except for this blog or my other writing outlets, I tend to not let people in. I suspect a lot of folks are like me, IDK.

Life, for me, is stop whining and get the fuck on with it, usually.

I almost died this month, suddenly, from bilateral pulmonary embolisms. I don’t want to die. I REFUSE.

Rog, I love you, but I don’t want to see you anytime soon. Maybe in 40 yrs. XO

My other friend/s. I love you all, too- even the ones I haven’t seen or neglected to reach out to for a million years. Thank you for reading this and I am sorry I have not been updating very often.

 

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I should be blogging, but life & bleeding & Bourdain & grads & ballet get in the way…

CBHNBKSWYAE0HUF

I should be blogging about my female issues, part 2, but at the moment my innards are weeping the bloodiest of tears. I’ve slept so much this week since the endometrial biopsy- and it jump started my period early. I had no idea that simple uterine biopsies could take so much out of a person. The pain is better, the fatigue is not.

My hysterectomy is scheduled for 12 July.

My endometrial biopsy (the first) should be back early this week, the oncologist says.

My son graduated from high school last weekend, I still need to add this to the blog. I am so proud of him.

Maisie has her 2nd ballet/tap recital of her life tomorrow. I will be herding cats/taking care of the tots back stage, like I did last year. Someone has to do it and I’m evolving into a stage mother at this point.

The other crazy things happening in the periphery are dying down, for now. I’ve had my say and will continue to work through this, as a reminder to myself and others- don’t let people walk all over you. There are some seriously chronically messed up opportunists out there- and yeah, while addiction can account for a lot, that still is not an excuse for what was done to us.

I think about Bourdain and his fragility- and the fragility of those around us. This world will eat you up and spit you out if you don’t stand up for yourself and for what is right. Tony Bourdain stood up against the tides, championed his girlfriend’s #metoo cause against Weinstein- and it still wasn’t enough.

I saw a chilling post Bourdain put up on his Twitter on 22 May. It called out some guy re being found hung (I’m paraphrasing) in a lavatory from auto-erotic asphyxiation. It kind of gave me chills. While I don’t know the circumstances surrounding his death any more than the rest of us (a bathrobe belt, found tied to a door)- suicide or accident- neither is preferable.

He had his child at 50. That alone would make it impossible for me to take my own life, but I don’t live in anyone’s skin but my own.

It’s sad, sad, sad in this mad world.

Death comes to all of us, sooner or later. I think about my own mortality a lot right now. I’d fight tooth and nail against it, just like I fight tooth and nail against any other injustice levied against others and myself.

But life goes on, children grow up and graduate and do their recitals and play with their toys. We grow older. We die.

Over and over, in different bodies and different lives, it is all the same. We all share this common thread- even though we believe we’re unique.

We’re not unique. That is the beauty of it. The sameness, the threads that bind us- that’s the wonderment.

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Court or No Court? Consent or No Consent? Panic Attack or No Panic Attack? PLUS UPDATE and VLOG

Trying not to have a panic attack right now… woke up to a call from the social worker at the psych ward my mother is currently in. Apparently, she can’t tell me much, due to some confusion as to whether or not my mother has given consent to release information.

HIPAA law is an asshole, in my opinion, at this very moment.

I am her POA (Power of Attorney). I’ve been having her ‘flag down’ a nurse every time I talk to her to give VERBAL CONSENT on the telephone since she’s been in this facility.

We did not have this type of runaround at Pine Rest, so it is very frustrating.

Things my mom’s current social worker DID/was able to tell me:

1. No, my parents aren’t compelled to divorce as per the group home owner’s questioning.

2. She is compiling a list of ‘safer’ homes that would be (in their mind) a better fit. AFC homes aren’t locked facilities. The doctor recommends a locked facility right now, as she is not stable on meds.

3. When I asked about the paper I received last night re: the mental health court hearing on the 6th, I was told that I should contact the court house- specifically a person in the probate court that the hospital itself deals with.

Apparently, there may not even BE a court hearing that day, as she was given 3 options and one was to waive the hearing- which would mean she would be agreeing to treatment.

UPDATE:

Left a message with the guy the social worker directed me to and received a call back. He confirmed that my mother had indeed met with her court-appointed lawyer the other day and signed a waiver agreeing to comply with medical treatment… when I asked if this means I should still pursue the guardianship or not, I was told to absolutely do so.

Now I have to go to visitation tonight and have her sign a written consent form to allow these people to talk to me.

I am really anxious about this, all of it.

Pursuing guardianship is a lot of work and a lot of responsibility. I do already make almost all of the health decisions and do the legwork for my parents, but not in any official sort of capacity. My sisters don’t want the responsibility- they live far away and are very ill themselves.

Leaving guardianship up to a stranger would be unhumane and irresponsible, in my opinion.

I am going to vlog the rest. This is too much too type for me this early in the morning.

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I am have been gone for quite a while-

My sister still has cancer, my mom is in a facility getting her bipolar/dementia meds leveled out, I am going through serious family problems and experiencing long term ptsd as a result of past child abuse.

Maisie is doing wonderfully! She is in Montessori school and is three now. She also does ballet/tap and adores it.

I have been on a ketogenic diet this year since July 10, 2017 per my cardiologist’s suggestion. I have also been using/wearing a fitbit charge 2, which has absolutely changed me from sedentary to active and I love it!

I am starting a vlog to chronicle my keto journey and just to be able to vent… xo