Long Time, No Post

   Well folks. It has been a hot minute since I have written on this thing. To be honest, I have been through a million things since 2019. It's 2023 now. Is there anybody out there?

    So, an update on my conditions. I recently have been diagnosed with Dermatomyositis. I still dont know a lot about it yet. However, there's a risk of cancers so now I have to have blood and urine tests, EMG, CT scan of my upper body, MRI of my muscles, a pelvic internal ultrasound and pap smear,  and colonoscopy. I am scared and very overwhelmed with the sheer volume of tests and magnitude of having to do this. I don't think I have a cancer. (I hope not) but it has to be done. But it is overwhelming.

   I also am back on the Methotrexate. Injection starting 0.5ml 1x a week. Low dose. But I generally tolerated it well in the past. But in times of CoVid I need to be more careful now. 

   Through this, today I left the clinic strong and stoic, head held high. No one can see my tears. But as soon as I got in the car, I started to shake, and cry. The panic and fear, and exhaustion, and uncertainty, and years of everything, combined with the sheer volume of what I must endure now left me sobbing in the car. I pulled it together and started to drive, stoic again.

     I called my niece as I was driving and had to be careful because I was crying again. She is such a beautiful soul and I felt bad for unloading my fears on her. But I know of anyone understands anxiety it is her. She's really a light in my life. I love my nieces and nephew. With my whole heart. They are part of why I fight when I feel like it's too hard. Because my love for them far exceeds my fears. 

   Then there is my wonderful boyfriend, such a sweet man. He is sipportive as well and can always be counted on when I need him. He is a gift to me and one I cherish every day. I only hope I can find some way to show him how special he is to me. I can not think of anything that is big enough to show him how much I love him, and how I will always be there for him, as he is for me, to the best of my abilities. I need to get him a special gift. Not for any reason but because he is a delight and my heart. 

   My mom she is a gentle soul. She has been through so much with me since childhood. Illnesses, hospitals, CSA, domestic violence, you name it, she has been there to help me as a child and an adult. She really doesn't see how much she means to me. But she is my heart too. I only hope I make her proud despite my life's plans taking a turn away from it's intent. 

    My cousin, she is so kind and gentle. She understands pain and feeling sick and how it affects you. She makes me feel. Less alone and more understood in our shared experiences. We have always been close and I hope we can always stay that way.

   My friends, the 3 that have been there through thick and thin, I wouldn't be able to say I am who I am without them. God I love them. Without question.

   So I have people who are there for me, and I will fight and keep going despite the fear and uncertainty. For them and for me. I just need to ensure that my mind doesn't roll down rhe rabbit hole into oblivion. So this blog will be updated more regularly now. 

Love to you all,

Tamara

Before You Praise Christianity Today

Everyone applauding Christianity Today, Evangelicals, and Christians for finally breaking with Trump, remember this: They KNEW Trump was a liar, a racist, a misogynist, an all out greedy and corrupt person. And they turned the other way when millions were suffering because of him. They DEFENDED him while the rest of us decried his behavior. They ONLY decided to cut ties and cut their losses after they realized that he was making them look bad. There are Bible verses that flat out describes these types of so called "Christians": 

 

"You hypocrites, rightly did Isaiah prophesy of you, saying, ‘This people honors Me with their lips, But their heart is far away from Me." ‘But in vain do they worship Me, Teaching as doctrines the precepts of men.’”

(Matthew 15:7-9)

“Not everyone who says to me, ‘Lord, Lord,’ will enter the kingdom of heaven, but only the one who does the will of my Father who is in heaven. Many will say to me on that day, ‘Lord, Lord, did we not prophesy in your name and in your name drive out demons and in your name perform many miracles?’ Then I will tell them plainly, ‘I never knew you. Away from me, you evildoers!’” (Matthew 7:21–23).

In the last verse, the evildoers whom Jesus does not to know are fake Christians, false teachers, and nominal adherents of religion. 

So before you praise them for doing the right thing, one needs to ask, if they really followed the teachings of Jesus: teachings of love, equality, helping the poor, helping the foreign as if they were your neighbors, and helping the most vulnerable, or did they simply use God's name to gain more power, enforce that power through deceiving their followers to worship a false idol, and allowing those in power to hurt the very people Jesus Christ himself said to help, respect and love?

They did not do the right thing. They are doing image damage control, and that is way different than doing what is just and right.  

Shattered Glass and a Cautionary Tale

 

   I have anxiety. It is not a big secret. Some days are better than others, and sometimes I need more help than others. Today was a bad day, and I have no food I can make in the house. This means I need to go to the store, and it being a terrible day for anxiety, I wanted to ask my mom if she would be willing to come to the store with me, just for support. I find going to the store with another person helps me because I can talk to them and not focus on the noise and lights and bustle that overwhelms me. 

     Well, my mom didn't want to go. That's fine, but then the questions and comments inadvertently berating me about my weight and food started:

"You have to have chili left. You already ate ALL of that food you made?" (This is a reference to a large pot of chili I made five days ago, to which I replied that I had after eating it for multiple days. She scoffed.)

"I don't have fancy food. I see what you buy. You're just picky. I don't need mayo I just put tuna on bread" (This is her way of critiquing my food choices. I have multiple rare diseases, and the meds really mess with my stomach. I can only eat certain things without getting sick at times. And it changes. One time all I could eat without vomiting was nutty buddy bars! That is why I usually buy Ensure because I know that if I have this problem, solid food doesn't work, and if it does, eating one thing is not nutritious. I buy what I can afford, cook when in pain, and can eat without puking.)

Then came this beauty: 

"I seen you eat. You shovel your food in your face and if you eat like that it is no wonder you have no food" (One day when I was running my mom around to help her, I had to stop and get a Burger King meal. I hadn't eaten in over 16 hours and was dizzy and shaky. I asked her if we could stop and we did. I was just eating at a normal pace, and the whole time she was making comments about what I got, and how gross it was, and how she doesn't understand how I can eat that fattening crap, etc. That whole meal I felt like a fat, ugly piece of shit. Like I am to blame for my condition. But I am not. I have a fat disorder called Lipedema. I will write a blog post about that later)

     So, I just hung up the phone after she said this last comment. I suffer from eating disorders. I alternate between binge eating and anorexia. I really do not eat a lot. Ask anyone who is around me a lot. They always yelp at me for not eating and force me to eat sometimes. That on top of my stomach being torn apart from my meds. 

     Now I feel like I am just a fat, ugly, useless piece of crap. I am looking at my body, the one I have worked so hard to save, and to love, like it is a disgusting blob and I am fighting those inner demons of self hatred and that little voice I worked so hard to stifle that tells me to do whatever it takes to prove I am worthy of love, love that society tells me I do not deserve because I am fat. Fighting that feeling that tells me I have to punish myself for being so gross and ugly. 

      I am writing this to tell anyone who makes little remarks, you may think you are helping. You may think you have a right to nitpick someone's weight. But you do not know their struggles. Your words may very well create a door for those demons they are privately fighting to walk through, allowing them to attach to the soul of the person.

     Your words are powerful. You have the power to heal, to help. To spread love and compassion. Or you have the power to tear down. To hurt. To mock. To harm someone. Words hurt. I implore you all, before you speak or type something remember that you never know what demons someone is fighting. You don't know their pain or struggles. 

     Remember your words are like bricks. Will you use them to build someone up, or throw those bricks into the fragile glass door someone else has worked so hard to create that keeps their struggles at bay, shattering it, and the person? Your words. Your choice. I hope you make the right ones. 

Obsessive-Compulsive Mindfuggle

     Anyone who says stuff such as "I am so OCD" when they neatly organize their DVD collection by title, or clean their room so it is nice and organized, or who is bothered by an "unsatisfying video", please take a moment to listen to me.

     YOU DO NOT HAVE OCD! True, you may have some Obsessive-Compulsive tendancies. You may like it neat and orderly. But frivolously tossing around the words OCD like it is nothing actually causes stigma against those with the disorder. How? Let me tell you.

     When you frivolously toss words like OCD or Bipolar around, you negate the reality of the diseases that millions suffer from. You create an image of the disorder, one that is false, and it becomes what people think of when they think of the disease. Think of OCD. What comes to mind? I bet images of neat and orderly books or a clean house comes to mind. Maybe even hand washing a lot. What does not come to mind is the horrifying intrusive thoughts that precede a compulsive action (called the obsession), nor does the anxiety and terror come to mind. Nor does the complete compulsion to do something repeatedly that you in no way can control.

      Here is an example. I came home from my therapist's office to find blood on the bottoms of both the outside doors. My OCD stems from fears of contamination. I seen that and I froze. I began to panic. My mind whirled with thoughts of HIV and dying of AIDS. Logically I know that HIV doesn't live long at all outside of the body. I also know that if you do not touch it you have zero risk. But logic doesn't help OCD.

      I became a prisoner in my mind. I got in my home, and the rituals began full force. Washing. Sanitizing. I put bleach on my shoes. I threw away my food I bought even if it was in a bag and in no way touched the ground. I scrubbed my floors and doors. Then I went into full blown OCD mode. The fight within my brain to stop the rituals caused me to be unable to leave the bed for four days. I was terrified to leave my clean house. I ate two chicken strips and a cup of Mac n cheese that entire time. The thoughts of disease and contamination screwed up my brain so bad I couldn't talk, or do anything but wash things. It was horrific. I had to fight my brain to not be terrified to leave my house even after it was sanitized of the blood outside. I still am unsure if I will win that fight but I hope to.

      I know this sounds crazy, and it is. But that is the nature of the disease. It is insidious and hides just waiting to get you. A drop of blood. A sneeze. A thought. Anything can become a trigger for an OCD flare. And my contamination fears are not the only kinds of things OCD can cause. Others have fears of words or places, rituals around numbers, sex, violence, religion. Literally anything can be ruined by OCD. It is like living in your own personal hell. A prison that you can not escape. An anxiety induced void that leaves you drained, depressed, and terrified.

      So when I say please stop trivializing my disease with quips and quizzes, it is not to be mean. It is because we really need more awareness and education on the disease. You wouldn't share a quiz called "what kind of cancer are you"? Or say  "I got a cold must be my AIDS!" So why trivialize OCD?

     

On the Culture of Rape and Objectification

This may upset some people but I was asked before why I am against people who talk vulgar about women, and objectification of women. This is very personal and this is why. 

I've been a victim of childhood sexual abuse. The man acted like my body was his property. Commenting how I was beautiful and developing nicely just for him. He seen me as an object. I was objectified. 

I've been a victim of attempted rape by a man who bartered with someone I thought was a friend to use in exchange for a drug deal for them (a so called friend set it up for me to be raped by a friend of theirs as payment for them to get drugs). Again I was objectified. 

To both men I was property. They were very macho like. Catcalls. Talked vulgar and made jokes about women. And they acted like they owned my body. My body was an object to be used for them. It was not me being a human being with body autonomy.  No. I was a thing. A comment. A receptacle for their actions. Something to control. Not a human. 

That's why I refuse to condone males being pigs under the guise of boys being boys and it's just how men are. Not true. Abusers are that way. Bad men are that way. Good men don't act that way and do not see women as playthings. I also do not condone taking away women's rights to their own bodies. Doing so reduces women in the eyes of the law to property. A thing to be used for a purpose with no body autonomy and no rights. 

Anyone condoning that behavior of being vulgar "grab em by the pussy", taking away women's rights, "redefining rape", telling girls their clothes distract male students, slut shaming etc,  also condones what happened to me. Condones rape. Condones sexual abuse of girls and women. They also condone both men who abused me getting into less trouble legally combined than I did writing a bad check. Because what happened to me is a product of that thinking. The rape culture we live in. Women as punch lines. As property. As something to use instead of someone to respect. 

Until no more women are followed in dark parking lots by men looking to rape, until little girls are no longer considered sexual objects targeted by schools dress codes, until women can report abuse and rape and regardless of race or money, and the perpetrator gets harsh punishment and not a slap on the wrist, until women and girls are SAFE AND RESPECTED, I will not shut up. My body has been attacked. My psyche has been victimized by a culture that sees females as something instead of someone. I hope you stand with me to make our country safer for us. 

Thank you for listening and feel free to share.

Skeletons and Phantom Pains

Just like that the skeletons in my closet have rattled out.  So tired of fighting these fuckers and shoving them back into submission. Who’d have thought what happened over 30 years ago would still haunt me randomly? How the actions of others could have scarred me so deeply that I fear I will always be damaged. Don’t get me wrong. The wounds have healed. But like a lost limb, the phantom pains of  what was there but is no longer still attacks me at random. Leaving me to fight with myself, that little girl inside of me who just wants to be loved, but not like that. Maybe I just need to embrace her instead. She doesn’t deserve to be forever locked away in the dark. She is me and I am her. Once I can accept what she endured enough to fully love her, maybe we both can really heal. 

Just ramblings from a lunatic. 

is “living” with pain really living?

I just can not understand why some doctors, and obviously most politicians don’t understand the realities of chronic pain. I understand the need for me to wean off of the morphine, as it is not working well any more and I didn’t want to go up on it. That’s tolerance and a sad, yet true effect of taking opioids. But here I am, near the end of weaning, and I am hurting so badly I really and truly feel suicidal. I really feel like my life is not worth living. All I do is sit here. When I try to go out, like now to meet with my mom, the pain was so bad I am in tears and my mom is scared for me. She sees me struggle to move, walk, stand, drive. She sees me collapse in pain and barely catch myself. Even with my walker. To top it off my tooth is busted and infected and it is hurting so bad I can’t eat or drink. And I am scared to go to the walk in cause high wait times and the flu which, if I get, can kill me. I already had a bout with the flu, and don’t think my body can take another. 

      My point is, in weaning they need to do better to keep a continuity of pain relief. I get that on morphine days mixing drugs is dangerous. But now that it is every other day, on days without it it is like pure hell. It’s bad on days with it ffs as the dose is so low. Right now I sit here, suffering. Thinking thoughts about death being better than this and of going to buy alcohol just to numb this pain. I get there is problems with addicts. But do not cause suffering on those who need the meds for a quality of life. 

      I am hoping I can get my doctor to at least get me something for the off days. The doctor knows I am not addicted to the meds. They also know I desperately need help. Hopefully they can help me soon before I do something dumb to stop the unending pain. 

      As for the acute pain, Medicaid, Medicare and tooth care are a whole other rant for another blog. For now I am going to hopefully not vomit as I go to be with my mom and grandma and try to get through it. Oh I took NSAIDS I was so desperate and the doctors said under no circumstances should i take them as they are a danger to my kidneys, stomach, and due to NSAID induced bronchiospasms, my lungs. I had to do a nebulizer twice to breathe. Lets hope it helps the pain and the asthma attacks were worth it.