BE AN ICON

https://www.merriam-webster.com/dictionary/icon defines it this way

1: a person or thing widely admired, especially for having significant influence or significance in a particular sphere  a civil rights icon  an actor and fashion icon

2: EMBLEM, SYMBOL   Rosie the Riveter, a WWII [World War II] cultural icon with her blue jumpsuit and red bandana, represented the women who went to work at manufacturing hubs across the nation

3   a: a graphic symbol on a computer display screen that represents an app, an object (such as a file), or a function (such as the command to save)

b: a sign (such as a word or graphic symbol) whose form suggests its meaning

I bought a t-shirt at a garage sale that said “Be An Icon” in bold print. Underneath in tiny letters it said justice. Justice could be branding, I’m not sure But the T-shirt got me thinking about this part of the definition “a person or thing widely admired, especially for having significant influence or significance in a particular sphere a civil rights icon an actor and fashion icon”.

I was thinking more about civil rights and social justice or simply being a person people can look up to or look to.  Not necessarily famous but someone you can rely on. I picture civil rights icons like John Lewis or Martin Luther King as people that could be relied upon. 

Living well working on healing and helping others heal or work through whatever they are going through. This is what I strive to be.  Not perfect but honest and forthright with what I’m going through. Being able to stay focused and positive is goal worthy. Life can be hard when all you see is the negatives of what you deal with.

Dealing with all that life throws at you these days is hard. Life is sucky. Medical appointments have been many,  19 in 14 days, it’s exhausting.   I have an appointment on Tuesday and two appointments on Wednesday this week.  

WHAT DO I do?  Life just gets crazier. I would love to feel better and have permanent teeth. This is another thing that bothers me. I could have posts implanted in the top but I am afraid that it might cause more problems. I’m not sure what to do or what to think. How do I make a sane rational decision? I also think that the upper plate is too thick. No one listens to me though. I don’t see the 0dentist until December. I also have another pet scan in December. So what do I do? Perhaps I need to message the dental specialist and tell her what I am thinking. I hate putting the teeth in. it’s uncomfortable. But I need to practice. What does Bruce think about implants? It has to be a decision made by both of us.  

Until a decision is made…

Eyes Forward 

ME

Something Needs To Change

I have been busy lately with a new puppy, and medical appointments.  Selene is doing well though she has more of the temperament of a chihuahua than the Shihtzu.  Puppy training is hard. Even the trainer said the smaller breeds are harder to train by virtue of their size.  She can be an angel or a demon. Medical appointments are exhausting.  Needing medical appointments is exhausting. The world is exhausting.  I am thoroughly wiped out.

I am in pain most of the time. I live in a constant state of anxiety, depression, and frustration.  I feel incapable of doing anything that I enjoy.  There really isn’t a joint that doesn’t ache.  The discs in my back, low in my lumbar and lower thoracic vertebrae, and my neck are compressed or compressing. My CMC joints, the base of both thumbs, are blown and I have carpal tunnel in both wrists.   I take medication for everything.   The pain meds help some of the pain; generally, my pain is not where it was a year ago, but it is still at a 6-7 out of 10.   I would like it to be below a 5 on the 1-10 scale.  I wonder if that is too much to ask?  

My mental health fluctuates, and I would like to find a baseline that doesn’t have me thinking that I am a burden and I would be better off unalive. Every day is hard.  I get that there are people worse off than I am than we are, but things are still rough. Pain is pain. Pain is subjective.  Mental health stuff, issues still cause problems. I cry a lot. I don’t sleep well, and I tire easily. 

I get sick and tired of people telling me just to pick myself up by my bootstraps. If it were that fucking easy I would have done it 40 fucking years ago. 

It’s amazing that the world’s events bother me emotionally and spiritually. They affect my mental health. The current state of affairs in this country and the world keeps me isolated and in the house. November vote, Covid, Violence, white supremacy, hate, RvW, DJT stupidity, Maga insanity, violation of the espionage act by DJT, War in Ukraine, southern border separations, Brittany Griner, and other Putin political prisoners. It continues to build and build and build until it feels like I can’t breathe, or think, and I can’t see an end in sight to the insanity. 

What can I do? How am I supposed to feel? How should anyone feel? It’s overwhelming. I’m not sure if one of my Psych medications is working. I feel sometimes like I am drowning. I look around and I wonder if there is any hope of anyone understanding.

I want to get my crafting/office space neatened and organized but I find it difficult to function. I find my energy lacking. I want to scream. I want to walk my puppy, but once again my energy is fundamentally near zero. I get easily frustrated and angry with myself for the lack of energy and motivation.  Just writing this has been difficult. 

The one good thing I have been able to read again. I have read 2 books in 4 weeks, one that was 800 pages by Sarah J. Maas that was truly epic. The other is a thriller by Jack Carr that struck way too close to reality.

What do I do? I sleep too much or too little, I eat too much or not enough. I do nothing or overdo everything. I am exhausted by everything. I hate watching the news so I escape into fantasy or home or cooking shows. An endless loop of escapism. Until Bruce is done with work, then reality slams into my brain because he actually likes the news. I can’t deny him that. He has been walking the puppy. I feel bad about that. He does all the cooking.  He does a lot of the work around the house plus works and takes me to all of my medical appointments. I am the luckiest woman in the world to have him. 

Long story short, I am afraid. I need to do something to get out of this funk.

Until then

Eyes Forward

Me

Me, the World, and Everything Else

The world or at least this country is fubarred. 

Right-winged super legislators have taken over the

Supreme Court. They have officially turned women into

2nd class nothings who can’t handle decisions about their

own bodies. We are quickly becoming a male-dominated,

theocratic autocracy. What else? The EPA has no right to

do its job regulating the bad stuff that is destroying our

planet

Then we have the DINOS in the Senate. Senator Manchin

and Senator Sinema keep the Democrats from doing things

that would move the country forward. Getting rid of the

filibuster is perhaps a bit dangerous, but necessary to pass

legislation protecting voting rights. How about codifying

Roe vs Wade or doing something about climate change?

Personally, I would like fewer subsidies going to big oil. I

don’t know how much they get, but I bet it would go a long

way towards funding Solar or Wind energy programs. How

about doing something regarding privacy laws in addition

to R v W so that LGBTQ+ rights are protected. Another oldie

but a goodie we could do something more

about–commonsense gun laws. And no, I DON’T want to

take away your effing guns. I just want the mass shooters

to have a harder time getting them. And if you want to be

an originalist the constitution was written at a time when

guns referred to a ball and musket. Not an AR-15

assault-style weapon. You don’t go hunting with an

AR-15; you use a long gun, a rifle, or a bow and arrow. The

assault-style weapon is made for one thing only, killing

human beings. An AR-15 would render any target prey

unusable. What is the point? The point is sane rational

people do not need AR-style weapons. And please don’t get

me started on hunting for sport. How about raising the

federal minimum wage? People need to be able to not

worry about not having enough money to feed the kids or

buy diapers.

Something needs to get done about supply chain issues and

the price gouging that goes along with them. How about

inflation? Damn it! Do the fucking job you’re paid to

fucking do. The rightwing theocratic fascists are not your

only constituents, and neither are your high-priced donors.

It’s hard to deal with my health, both mental and physical.

Plus the insanity of this country, and the world at large.

He that shall not be named has turned this country into a

shit show of constant disgusting discourse. I can feel the

hate every time I go outside. I feel it every time I go on any

Social Media site. It makes my anxiety worse. It makes my

depression worse, And when there is violence like Buffalo

and Uvaldi, the war in Ukraine, I start falling down the rabbit hole of my childhood which is filled with anger and ugliness and abuse, and that triggers my PTSD. No, you don’t need to have been in the military to have PTSD.  This all means life becomes more challenging than it has to be. I still need to be able to function

I want to be able to function better. I need to get downstairs

and clean. I need to work on training my puppy. I need to

work on my office. I need to be here, working on my

writing. I need to be walking and exercising. But my brain

revolts, and I have a difficult time sleeping, waking, and

functioning. I feel awful.

I’m done in. How do I dig out from under the weight I put

upon myself? I want to save the world. I want to save every

cat and dog out there. But what I need to do is take care of

my husband Bruce. I need to take care of our house and our

animals. I need to take care of myself. That’s the bottom

line I guess. What are the priorities? They have to be right

here at home.

Until next time

Eyes Forward

Me

Kitties and Puppies and Politics Oh Myyyy!

Come follow me

EYES FORWARD

Where to start. I do have some awesome news. PUPPY! I am getting a small puppy that will become a small dog. Part Schitzu, part Chihuahua. Her name is Selene. She is named after the goddess of the moon. She is the tiniest of a litter of six and she is adorable! I have some pictures and I will post them. She will be a welcome addition to our family. She will also be my ESA. She comes home to us on May 12th when she is old enough to be away from her momma Luna. Her human carer regularly sends videos and pictures of her to me. We also have been visiting regularly so that Selene can bond with me. We want her to only come to either Bruce or me. I have bought her an enclosed playpen with extra bedding for nighttime until she gets a bit bigger…

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Kitties and Puppies and Politics Oh Myyyy!

Where to start.  I do have some awesome news. PUPPY!  I am getting a small puppy that will become a small dog.  Part Schitzu, part Chihuahua. Her name is Selene. She is named after the goddess of the moon. She is the tiniest of a litter of six and she is adorable! I have some pictures and I will post them.  She will be a welcome addition to our family.  She will also be my ESA.  She comes home to us on May 12th when she is old enough to be away from her momma Luna. Her human carer regularly sends videos and pictures of her to me. We also have been visiting regularly so that Selene can bond with me. We want her to only come to either Bruce or me. I have bought her an enclosed playpen with extra bedding for nighttime until she gets a bit bigger.  She might always go in there at night to prevent getting into things or prevent getting stepped on.  I am going to have to get used to being downstairs more as it will be much easier to take her out to potty (and quicker) since I am slower on the stairs. We do have puppy pads and all things puppy. Here’s to animals and their healing energy.My medical issues are always changing. I now have a new diagnosis. Well, not really new it was in the records. I just advocated for myself for it to be taken into account with everything that has been going on. 

Borderline Personality Disorder 

A borderline personality disorder is a mental health disorder that impacts the way you think and feel about yourself and others, causing problems functioning in everyday life. It includes self-image issues, difficulty managing emotions and behavior, and a pattern of unstable relationships.

With borderline personality disorder, you have an intense fear of abandonment or instability, and you may have difficulty tolerating being alone. Yet inappropriate anger, impulsiveness, and frequent mood swings may push others away, even though you want to have loving and lasting relationships.

Yeah. I wanted it to be looked at because of certain behaviors I realized I was exhibiting.  It meant an adjustment and change in medication, and a suggestion of a new type of therapy I need to work on scheduling but have been procrastinating about called DBT. 

Dialectical behavioral therapy (DBT) is a type of cognitive-behavioral therapy. Cognitive-behavioral therapy tries to identify and change negative thinking patterns and pushes for positive behavioral changes. DBT may be used to treat suicidal and other self-destructive behaviors.

Another thing going on is a wave of absolute anger bordering on rage at my medical team. I was told that I could get both an upper and lower plate (teeth) after my cancer surgery and radiation. So I went and had the upper plate done. I asked the dentist who made the plate if he would be making the lower one. He said yes.  He said he would see me the following day with my surgeon since it was my 6-month follow-up.  He. Did. Not. Come. Instead, he went to see my surgeon prior to my getting there and apparently told her I could not get a lower plate. No one has explained why. I was in tears. My surgeon said we would see what was going on at our next appointment. That appointment is May 5th. I get to have a swallow test as well to hopefully help with my speech. I have not been wearing my upper plate because I see no sense in it. I can’t use it to eat. If I don’t get a lower plate what good does the upper plate do? I am stuck eating the same things over and over and over again, and all soft or softer foods. I want to east something that crunches. An apple. A Cracker. ANYTHING CRUNCHY! I hope my surgeon has some answers for me this time.

I am still not sleeping well nor sometimes very much regardless of medication. Or I am sleeping way too late.  I am unable to fall asleep until quite late. Then I sleep too late and spend all day doing nothing. Staring at the TV, or the phone and TikTok. Sometimes I might crochet and do one of the others at the same time. Or I spend too much time on Amazon shopping or dream shopping. Or I cry and snuggle my cat Phryne. It’s really really hard to stay positive.

I recently went to see my primary care doctor. We were going to do all the tests that ladies need, but apparently, my insurance (medicare) doesn’t pay for one of the exams because most people on medicare are 60 plus and no longer need this regular exam. But she noticed my one ear was very waxy.  I also told her that sound was muffled in that ear. They went to clean it and it started to hurt so they stopped. I got my covid booster and she told me if my ear was still bothering me in 3 days to call her office. This I did and I went back in and my ear was still red. She was worried that I might have a perforated eardrum.  Drops were prescribed 4 drops 2x a day for 7 days. I am on day 6 and there has been no change in either the discomfort or improvement in hearing.  I have a feeling a visit to an ENT is in my future, that is not my ENT surgeon from my cancer. 

I am truly exhausted from being sick and tired.  Tired of crying, tired of the pain (don’t get me started that’s a whole other post), tired of everything that I go through daily.

Well, I think I will save the political rant for tomorrow, there is a lot to unpack and it all seems to affect how I feel.

Until then

Eyes-Forward

Me

WOW, IT HAS BEEN A WHILE

EYES FORWARD

It has been a long while since I have felt good. Whether it has been the cancer (more on that later), the mental health issues or the chronic physical issues and the chronic pain, It has been dealing with the medical establishment. None of these things are easy to deal with alone, but when you compound them all it’s exhausting. I have “met” a group of supportive strangers in an unusual forum that I thought I would never use (again more on that later.) The one person I can count on IRL is my hubby Bruce and perhaps my cats. Secondarily his family. His family has been my family for 24 years.

I have been dealing with some severe depression bordering on suicide. I don’t want to live but I don’t want to unalive myself either. Medications have been added, and I am still on fentanyl patch from surgery and…

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WOW, IT HAS BEEN A WHILE

It has been a long while since I have felt good. Whether it has been the cancer (more on that later), the mental health issues or the chronic physical issues and the chronic pain, It has been dealing with the medical establishment. None of these things are easy to deal with alone, but when you compound them all it’s exhausting. I have “met” a group of supportive strangers in an unusual forum that I thought I would never use (again more on that later.) The one person I can count on IRL is my hubby Bruce and perhaps my cats. Secondarily his family. His family has been my family for 24 years.

I have been dealing with some severe depression bordering on suicide. I don’t want to live but I don’t want to unalive myself either. Medications have been added, and I am still on fentanyl patch from surgery and soon I will add at least one more doctor to my insane amount of specialists that I deal with regularly.

An idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation.

Right now I spend a lot of time crying and not sleeping well. I decided to renew my domain and website for another year and work on writing more frequently to talk about the cancer, being a”spoonie” and “neurodivergent”. I want to talk about chronic pain and the opioid crisis and how it affects people with intractable or chronic pain. I want to talk about Medical PTSD and some in the medical establishment gaslighting chronically ill patients and neurodivergent patients.

l’ll also talk about happier things I hope and share some cool things that I have discovered while being scary alone inside my own head. Depression, anxiety, PTSD, medical PTSD and BPD make my life difficult. That’s just what makes me neurodivergent. I hate myself right now I hate how I look and how I feel and it is all jumbled up with what I said above plus the physical chronic illnesses and pain.

More soon ME

The Countdown Continues

A day and a half to go before surgery. I feel fine. I’ve never felt sick. I feel tired, but that could be because I don’t sleep well.


I’ve had bad teeth since I was a kid. We never had good medical or dental care. It seemed an afterthought for my parents, so dental care was something I have been afraid of. I never learned how to take care of my teeth. I really never went to the doctors until I was an adult. I never went to the dentist out of fear.


I was a smoker. When I was young and felt invincible. I always had sinus and upper respiratory issues. Smoking aggravated them.I gave up smoking 8 years ago. I started getting better and better medical care, but not dental. 


My health was a bit sketchy. I needed to have some serious health issues taken care of. The problem? Being poor and living in a red state. 3 years ago. we moved to Minnesota.I started getting great health care with Mayo. but I still did not have dental care.


Now I have oral and lymph cancer. Luckily, the cancer is not below my neck. The doctors consider neck and head cancers to be “curable” vs. lower cancers which are


“treatable”. I’ll have major surgery to have my tumors removed, and a portion of my jaw removed and reconstructed from a bone from my leg. Is it because I smoked for years? Good chance. Doctors tell me not to blame myself. I didn’t know. I really didn’t. I am so scared.


Sorry if I am repetitive, but this is what is on my mind. I’m trying to stay positive. No blame. Focus on the future and my family.

We have kind and generous neighbors who are taking the time to take care of our cats while I’m at Mayo. Another will water the garden and take the garbage cans back to the back of the house. I am thankful for the help.


I’m very thankful for Bruce and the family that cares for me.  I am thankful for the awesome team of doctors and everyone who will be there for me.

I continue as always … eyes forward.


Me.
.

COUNTDOWN

It’s been a long couple of weeks. Since last writing, the first step I took was a PET scan. This test lights up areas of concern. In my case, they were looking for the origins of the cancer they found in the lymph nodes in my neck. And it did. After that test I went and met with the ENG surgeon Doctor Tasche. She said that there was no cancer below my neck which in itself was a relief. She said something lit up in my mandible area. She did a biopsy on the area to confirm the cancer was in that area. Waiting for the biopsy results was overwhelming. I spent a lot of time crying, waiting and crying some more.


In the mean time, I met with my medical oncologist Doctor Price. She talked to me about chemo and the general idea as to whether I’ll need it. I won’t find out what needs to be done until later. The next step was to see the dental specialist so that I would know more about what could happen inside my mouth. And what they could do to reconstruct my teeth.

MY HAIR


This past Friday, I got the results of the biopsy in a phone call from my surgeon Doctor Tasche. We had quite a long conversation about everything that it means. On Monday the third, I had another see ct scan. It was to see if anything had changed since my cat scan a month ago. It was also to see the shape of my jaw so they could reconstruct it.


On Tuesday May 4th, I met with Doctor Tasche and Doctor Van Abel and had a third CT scan. Yesterday I met with anestesia t0 determine whether I was healthy enough for the next step. I’m exhausted. I’ve spent a lot of time crying. I am angry, frustrated, terrified, and things are moving very fast.


The next steps are scary, but need to be done. Major surgery. 12 hours long. They will remove tissue and part of my lower jaw. They will surgically remove most of the lymph nodes from my clavicle to both ears. I’ll have an incision that will look like a necklace.


To do all this, I will also have a tracheotomy so they can work in my mouth. They will also place a feeding tube. I’ll go home with the feeding tube. After removing the cancer which hopefully won’t involve the tongue, the longest part will begin.


They expect a lot of swelling that is also the reason for the tracheostomy. I will be in the hospital for at least 5 days. I won’t be able to talk for awhile. I won’t be able to put weight on the bone donor leg. The feeding tube is so that nothing bothers all of the microsurgery. I will also have new teeth. They expect me to be in a lot of pain. All my meds in the hospital will be administered through the feeding tube or IV. I will go home with a boot on the donor leg to help support the ankle joint and help keep the weight off of it. I will also go home with the feeding tube. Hopefully, that will only be for an additional week.


I have one more test on Monday, an ultrasound of my thyroid and a possible biopsy. The doctors saw some sort of nodule or calcification on the thyroid. They will also look at the lymphs next to the thyroid which thus far aren’t affected. But if they find something on the thyroid all of this will be taken care of during surgery.


Today is Thursday May 6. My surgery is in 5 days on Tuesday. Getting through the next few days is going to be difficult. On Monday the 10th, I have the ultrasound, my millionth Covid test, and I meet with the radiation oncologist. They send tissue out during surgery and bone as well, I know I’ll need radiation. We’ll find out from the results of pathology as to whether I’ll need chemo as well.


I am terrified. I’m not sure of anything. I hate feeling so out of control. On the other hand I feel like the luckiest woman in the world. I have Bruce who loves me, my stepdaughter who will be coming in on the 17th (hopefully home from the hospital then). My stepson Brent sent us a GrubHub gift so we don’t have to cook dinner every night. Bruce’s family  are wonderful and supportive. So are my friends including Angela, Susan, Eileen, Christine, and others, my cousin Tracy, my brother Shane, even my stepkids’ mom Michele. I am lucky to have all these people who love and care about me.


I am also really lucky to be at Mayo, the best medical facilities and staff in the world. The coolest thing is all the female medical surgical, dental and oncology team I have. 12 hours of surgery requires multiple surgeons. There are 2 female lead surgeons, Doctor Tasche and Doctor Van Able. There is also Doctor Silvers, physician’s assistant Lizzy and more that I haven’t met yet. Not sure about anesthesia, but my dental team leader is female and so are the radiation oncologist and the chemotherapy doctors.I have faith in my medical team. Tons of it. But that does not alleviate the fear and anxiety. I am not looking forward to 12 hours of surgery, weeks of recovery, then 7 weeks of radiation and possibly chemo.

Photo by Olya Kobruseva on Pexels.com


I am trying to focus on the future. My daughter’s wedding, and the birth of our second grandchild-a boy due in October. Trips with Bruce, eating an Apple with new teeth, being able to do more things.


I am trying to focus on the future. I will have to be concerned about my nutrition. If I start losing too much weight too fast, I’ll wind up back on a feeding tube.


5 more days.


Eyes forward always.Me.

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