Brain Scans and Unwashed Pans

Seriously. I have been dealing with a small issue that has me scared and at the mercy of doctors and their fabulous timing. See, i had a headache for four months. Every damn day. Combine that with stupidity at a communication level you have one weirded out neurologist who will stop at nothing to find what lies beneath. So I had a CT scan done of that piece of tissue between my ears, the brain. They seen on one slice a "hyperdense 2-3mm focus" and "motion artifacts which made reading the scan difficult".  Of course the small hyperdense focus is near the "foramen of monro" in the "anterior ventricle of my brain" in laymans terms despite the terrible issues with the scan, this small hyperdense focus is in the prime spot to be something called a colloid cyst. A colloid cyst is a growing cyst made up of all sorts of fun funky crap. It can block the flow of fluid in your brain and cause an enlargement of the ventricles and kill you. The cure? Invasive brain surgery to remove the cyst. Anyway they said it is not ruled out and i had to do an MRI to confirm or rule out said potential cyst so, i have been scared as hell processing a potential little asshole in my head that could change my life forever, and I schedule the MRI. I go there and thanks to my big ole lipoedema arms i barely fit in the MRI tube. Of course they can't scan you like that. Not to mention i nearly died of a panic attack going into that god forsaken tube of creepiness. The only thing good was the awesome people who were there. (Waves to buffy) So they scheduled me for an open MRI. Seriously, that thing looks like a giant hamburger bun and my butt was smack dab in the middle. This made me the meaty goodness inside the MRI bun. So i have the scan yesterday complete with a very bloody IV with contrast (i was being a thin blooded bleeding freakshow for some reason yesterday), and creating songs in my head when i heard the hellacious noises that machine makes (i may have created the next hit industrial song from my time in the scanner. trent Reznor should hit me up for the melody)... And now i wait. I'm trying to stay hopeful but it is scary facing something like this. I guess it has taught me to have gratitude for my life now, and that i need to stop sweating the dumb things. You learn from fear i think, and i hope to god this turns out to be nothing. Time will tell. Now to resist stalking the doctor until they give me the results. (Seriously. I will sit outside of his house with binoculars and a large 44oz soda hooting like an owl just for effect lol) I just want to move on with whatever the next step may be. Either rejoicing in a head free of lumps of blobby crap, or facing having my head poked in like some sort of zombie appetizer on a stick. Time will tell. Just breathe. And for god sake wash the damn dishes. Your kitchen looks like hell. 

Relief With a Side of Back to the Old Drawing Bored

My MRI scans came back clear! They originally thought I had what appeared to be a colloid cyst in my brain. Comparative scans and a team of specialists reading the scans and the original one as well ruled that out. I am so thankful i am in tears. The thing is while I really did not want a cyst or tumor in my brain, now I need to keep doing testing to figure out the causes of my symptoms. So it is gratitude followed with a side of "well now what?"

Now on to an EEG to rule out seizures and some neuropsych testing to rule out organic brain issues. Grateful and relieved beyond measure right now. I need a hug cause all these weeks of worry and fears have hit me at once now that i know i am okay with that part. Thank you to all who prayed for me and sent healing. 

Attitude of Grattitude

Lately people have been so kind to me. Little things, helping me clean the house, picking up and buying food at the vet for my cat, grabbing food and tampons and other stuff I need, and now gifts of coloring books and colors!!!! My life has been rough as of late. My legs are swelling terribly. I am not doing well with pain and fatigue. I injured my knee and came down with an upper respiratory problem. This is bad because I can't take my chemo and other immunosuppressive drugs when I am sick, so the Vasculitis takes over. I have been barely scraping by on the finances. It has been really hard. But these small acts of kindness, they change my life. They make it bearable and give me strength to keep fighting when I want to just give in. I need to remember God puts me where I need to be. Not where I want to be. Sometimes the bad stuff puts me into the middle of events that I can use to change lives. Chronic disabling diseases are hard. But small acts of love, they tame the beast. Like my niece drew during the Fargo ND Violin 4 Vasculitis event, Vasculitis is a vampire, but with love it becomes a little nicer". That rings true. Thank you to the Angels bringing me just a glimmer of happiness and hope. May you receive the blessings threefold. 

Hillary, DNC, There is A Way to Restore Unity...

Dear Democratic Party, 

     There is something that can bring unity and restore democracy. Please, hear me out. See, we all know Bernie or Bust is a problem for the election this year, but it can be overcome. Lets explore how to do this, shall we?

     What upsets Bernie supporters, and hear me out, is that, after outing Debbie, Hillary could have completely denounced the actions of this election cycle. She could have distanced from it. Said no I wont support this. But within minutes she had offered her an honorary position in her campaign, even praising her work. 

     Even if its not an official spot, that move, it was a huge F you to all of us. She literally in one move said, screw you, what they did is fine, lets reward it buddy. You misbehaved, but here is a reward for it, you did great Debbie.

     Then at the convention (I was and am close to the delegates in two states, and I was one of them for my state who helped get them elected and fundraised to get there), they said that, while our local State party was amazing, they felt hated, and were being treated like irritants so to speak by the National Party. Like flies on a horses behind. Wether or not it is real, or perception, is irrelevant. Just having an atmosphere that was volatile enough to Bernie supporters where they felt unwanted there, IS a problem. 

     After all they ARE a type of elected official, chosen by the voters for a purpose. Treating them anything less than what they are, elected servants for us, is a disgrace.  Having their sings stolen. Refusal to help people get food drinks etc but yet Hillary supporters were ushered in and treated like queens and kings. I seen instance after instance. And seeing the Hillary delegate friends I have's experience versus the Bernie delegates experience was shocking even to me. 

     

     Literally the differences between state and national was like a local credit union vs a too big to fail bank. One they care about your needs, even with a job and a bottom line, they work together for you, but the other will do whatever they want, even throw up a metaphorical middle finger, because they feel like you should accept it and just roll over. Nothing you do will sway them because their minds are made up. Its horrible. I watched my amazing friends heartbroken, treated bad, their cherished Bernie signs ripped from them (Hillary signs were not taken away. Some unity huh?), and more. My Bernie sign is cherished by me. Because I cherish the work I did for him. If they ripped my sign, I am sorry, but a fight would have ensued. Because that sign is a part of my work. My history.  My job. My fight and passion. To have it ripped away and tossed aside for a forced Hillary unity sign is despicable. 

     It was not all bad though. When Bernie came on it was a true moment. A thing of beauty. Tears of joy, passion, pride, love, all the thing that are needed to win against someone like Trump in November. None of the pro Hillary people caused that reaction. None. Not one, besides Michelle Obama, came close to a drop in the bucket of stirring the passion thats needed to win, and grow to November. 

     If Hillary really loved America, she'd step down right now. Seeing what has been done, regardless of it's validity, perception is everything right now. And most people's perception of her and the party right now, is negative. 

      Every good point raised was all Bernie's doing. Not hers. They were all his ideas, echoed. Concessions to us to make us shut up. Not real and passionate beliefs of hers. Everything said just weeks ago she was mocking as unrealistic. She reluctantly agreed so she can win. 

     She just isn't seen as honest. Too many scandals. Shes not a good candidate. She will suck money like a sieve trying to repair her image, taking away from all the down ticket democrats we need right now. (Lets face it. The Republicans have the money to outspend all our local state and federal democrats. We need to spend that money wisely, spend it on something other than the constant mudslinging dodging that we will have to endure with Clinton  running. 

     And  it wont work anyway. The damage is done. The Only thing that would repair her tarnished image, and wipe the stain off of  the Democratic Party in the eyes of the people, the only way to restore both her integrity for the future, and the party is if she steps down. Anything less at this point is moot. 

     Hillary if you live America, realize that, while I admire your fight as a woman in a hard spot to fill, some things right now are more important than your status as the first female president. America needs something, and right now, it needs integrity. And you Hillary, I believe you have that enough to do the right thing. Step down and let the repair to your name and your party soar. Do something that will actually defeat Trump without costing all the down ticket democrats. And something that will go down in history as a great sacrifice that you made for our great country. 

     It is called integrity. And it is something we need more than pride and status right now. Our very lives depend on it. The very lives of millions depends on it. Is it reasonable to demand millions of angry disenfranchised and hurting people swallow their pain and just accept things, or is it more reasonable for one great person to sacrifice and usher our country into a new history that will forever be one for the books? 

     Your choice. Your move. Checkmate. 

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?

     

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. 

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. 

Crinkles and Boredom

All work and no play makes Tamara a dull girl. All work and no play makes Tamara a dull girl. All work and no play makes Tamara a dull girl. Seriously if I do not find something to do and someone to do it with soon, I am going to start hallucinating simply to entertain myself. My brain can only handle so much dull in one day.  I wish many of my friends, such as Maureen was closer. Never a dull moment around that girl! I am going to go stare at my wall. Maybe I can hallucinate a fun pattern or something. *grin*

High as a Kite, Low as a Grave

So, today my mood is better. The stupid thing is, now my body won’t cooperate. So here I lay, bedridden and alone. Nothing but my imaginary friends to keep me company. (Hands off my unicorn you ruthless trolls!!!) 

It is interesting to say the least, how a sound mind doesn’t always equal a sound body, and vice versa. 

I give up. I’m going to pour coconut oil over my life and hopefully that will fix everything. After all Dr Oz and that Avacado dude say it cures everything. 

I’m going to bed and if I’m not a sane, thin yet curvy, perfectly healthy and rich person, I am suing Avacado and Dr Oz for lying to me. 

Goodnight my friends, and don’t talk to strangers. Especially ones with imaginary friends!

The hardest post I have ever written.

 I literally have been thinking hard about if I should do this. After all, it is a secret I have held on to for years. Ever since I was a child. What would it accomplish? Who would it hurt? Is it really needed? In these questions I have decided that I need to speak out, to speak my truth even if it is hard for others to stomach. Even if it shatters the illusion around the person who literally ruined my life. 

     I am a victim of childhood sexual abuse. The perpetrator of that abuse was a well known, well respected musician in my state. He is even in the ND music hall of fame. His name is Jeff Mooridian. 

     When I was a child near 8 or 9 my mom and he were friends. I loved garbage pail kids and I would do chores for people to get money to buy them. Because he was a trusted friend I agreed to help clean his house. So he would pick me up and drive to Sabin, to that white house and I would clean for a few hours while my mom got stuff done. Seemed really neat and it was. 

     Then one day it wasn't. I was in the bathroom one day and he had a scale. I was on it cause I was a chubby kid. Not huge but I was called chubby. He came into the bathroom and told me "the scale will be more accurate if you take your clothes off. You'll weigh less". So I told him to leave and he did, and I got undressed. I got on the scale. He came in and I sat down on the toliet covering my body. He moved my hands and said "you are developing into a beautiful young lady. Don't cover up". Then he forced my legs apart. I fought but he was stronger.  He touched me telling me he was checking me. He moaned and said I was beautiful and felt good. I felt scared and alone. When he was done I quickly put on my clothes and sat there trying to process this. 

     Then it started. Regular abuse just like that. He was not violent or mean, and I was so confused. So scared. I became depressed and more isolated and angry. I was told that he would hurt my sister if I didn't do things he wanted. And he said my mom would blame me and hate me if I told her or didn't do what he wanted because I was supposed to follow his rules. 

     Another incident happened when he told me to take and clean out the box in the closet. I did and it was filled with pornographic photos and magazines of women. He walked in and said to me "do you like that?" Then he sat on the bed. He said "you don't have to if you don't want to but come sit naked on the bed with me." I told him no but I would sit with my clothes on. He tried pressuring me to take off my clothes, telling me I was beautiful, and touching me in my shirt and pants. He forced his hands in my pants. In my shirt. He put his fingers inside. After he was done, he said that I could make him feel good and he could make me feel even better if I took my clothes off. I told him I am not comfortable and after a few more minutes of tugging and begging he left. I now see he was giving me the illusion of choice, making me feel like I had control even though he had all the control. I now know that, had I taken my clothes off, I most certainly would have been fully raped. More than just with his fingers. 

After that I ran away from there but I was in Sabin. Where would I go? i couldnt run home. He chased me and when he got me he threatened me saying he wouldn't take me home, and that if I told my mom would hate me again. 

I stopped going over there after awhile. I told my mom I didn't want to. So he came to the house. He offered to take me to Hardees and I said I don't want to but he gave me that look and I went cause I knew mom would blame me (now I know my fears were from his lies. If my mom knew shed have killed him). We went to Hardees and I got a pound puppy doll and a meal. He drove over to where 30th Ave S in Moorhead was and parked in a lot. He put his hands in my shirt and pants again. Rubbing and grunting. I screamed at him no and I want to go home. He said I got you the puppy doll you wanted. I owed him. I said bring me home and he did. 

I never seen him again because one day my mom was playing duling banjos, a song Jeff used to play on his banjo. I came downstairs and took the tape out and screamed at her to turn it off. I hated that song. She got mad and I started to hit and become violent. She held me and asked what was wrong with me. I started to sob and curl up (about 10 years old or 11?) and I said I hate it because he plays it, and I spilled everything. My mom was livid. She busted the tape. She held me and told me he wouldn't hurt me again. She called the police. I had to give a statement and go to the hospital. I cant recall if they examined me or not. 

He was arrested and admitted to it all. I never knew what his punishment was. But mine was lifelong. I tried to kill myself at the age of 11 and 12. Hanging with a belt and overdose. And that abuse led to the situations where I became medicated, depressed, panic stricken and more. I am 41 in a few months, and I still have nightmares. I am nauseated typing this. 

     He was forgotten except by my subconscious until I seen a news story. Local Musician died. Jeff Mooridian. And I went into a panic attack. I curled up like a baby again and cried. My sister couldn't believe what she was seeing with the story. How great he was. How he was an amazing man. Friends of mine who did not know this or me at that age taking prt in tributes to him. He was in the ND rock country music hall of fame. He went on to do great things for himself. Remarried. Dunno if he had kids but I pray they were safe. And my life has been pure hell. 

      I haven't spoken this truth except to my old therapist when I brought up his name. Turned out my therapist knew who he was. I guess from the community. I never went back to him as I was ashamed for speaking his name. Like I was a bad person for speaking my truth. 

     Despite what he has done, I forgave him. For myself. But I can't hide it any more. I may lose friends because I spoke his name. But I am a survivor. What do I hope to gain speaking this. Saying his name? I hope to gain freedom from this hellacious secret that has been carried all these years. Hope that others will have the courage to speak up way before I could. 

    Say their name. Jeff Mooridian. He hurt me. I shouldn't carry his guilt and shame inside of me. And I am done doing so. If you know him I am sorry. I held it in because I didn't want to hurt others. But I can't hang onto it any more. It is killing me and his actions took most of my life already. 

     Jeff Moordian I set you free from my thoughts and my heart. You no longer have power over me. I'm not going to let your actions be my legacy. That is your legacy and even though you are not here any more it is time you owned it. I am done carrying it. 

     Thank you for listening. 

My Journey Out of Madness, Day 1

      First a disclaimer. I use the term madness to describe my symptoms, not my illnesses. I do not see mental illness as "crazy", nor those who suffer them as "mad". I am describing, for my own self, how it felt being in the condition I was in, my own internal experiences. While words such as crazy looney psycho or madness may be okay for me, in history those terms have been used to exploit, and isolate Mental Illness sufferers from society.

      I use them to take back my power. Take back my dignity. Take the bad out of words and use it to empower. While that is my way of dealing and coping, please remember that others may find these word degrading. This blog is my journey, and I ask that you remember every person coping with illnesses of the mind are very individual. Find out what is comfortable for each person before using words like these. 

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     So, I started Partial Hospitalization Program again on Tuesday, May 22, 2017. Partial hospital is an intensive mental health treatment program that runs from 9am to 3pm (other programs nay vary, these are my program hours), and I go home at night. It is for those sick enough to need more support than outpatient treatments (weekly or monthly appointments), but not sick enough to require 24/7 round the clock care (inpatient hospitalization). Often it is a bridge between inpatient and outpatient, but can also be used for my purpose, to not deteriorate into needing full inpatient care. It incorporates med nanagement, skills training, activity therapy, group and individual therapy. 

     For me, my life has been slowly spiraling out of contol for awhile. Usually, I get this way because I do not follow through with some aspect of my care. This time I did everything right, but circumstances became more than my coping skills, and medication can only do do much, so I spiraled downward. 

     If you view my blog post called My Twin Flame is Lost , you will see that one of my biggest supports, my first love, and my best friend, passed away quite young and tragically. I haven't dealt well with it at all. Combine that with an increase in my medical issues (I suffer with two rare autoimmune diseases, Microscopic Polyangiitis and Behcet's Dise ase, as well as a fat disorder called Lipoedema. I also am recovering from an Acute Pulmonary Embolism secondary to the Behcet's.), the loss of my grandfather, the loss of my job, feeling like a burden to others, and isolation due to my illnesses, it was all bound to flare up my mental health problems. 

     Over the past few months, I found myself slowly losing interest in things I enjoyed. I made plans with friends and family, but just could not follow through. I just had no will to participate in my own life, let alone the lives of others. This avoidance turned to isolation which turned into a full fledged phobia of leaving my home. I felt artificially safe in my house, eventually that safety narrowed to my bed. I was now a prisoner in my own head. Fear, self hatered, paranoia, and extreme depression led me to neglect my appointments. I cancelled them citing various reasons. None of which were "I am losing my mind, my head is full of horror and I am being held hostage by my own brain!" 

     When I did manage to override the fear and go to an appointment, when they asked "do you feel safe at home?" I wanted to say no. That my brain was slowly beating me down, and holding me hostage in bed like some prisoner being forced into solitary confinement. I wanted to say "the only danger to me is myself ", and that I was being held hostage by thoughts of suicide and my fear of acting on them. So, do you feel safe at home? My answer? "Yes". 

     My medical health declined rapidly as I barely ate, couldn't shower, stopped or missed meds, because I couldn't go get them, and that further dragged me into darkness. My body became the warden, my mind a prison. My soul was the prisoner. Pain, both mental and physical became so perversely prominent that I debated even why I was worth saving. I felt like I would be better off dead, and others could be free of my burdensome existence. I went numb. When I lose ability to feel, the next step is suicide.  Having recently lost a person I looked up to to suicide, as well as one of my best friends in 2003, and a man like a dad to me as a child, to suicide, I eventually reached out. Funny thing is, I cancelled the assessment more than once, but that teeny speck of hope sonewhere inside propelled me to go the third time. So here I am. 

      So I have a few days in at PHP. That's three days of not isolating. Three days of support. Of course last night I ended up in the ER. My months of neglect for my health caught up to me so I couldn't go today to PHP, and programming doesn't resume until Tuesday due to the holiday. I am feeling better medically. (I was drowning in fluid, and thanks to the medication I have peed over 30 times in the last 35 hours, which is good!). I can breathe and pain is decreasing some. So is my headaches and other things. However I have four days to wait until I can go back to PHP and I am scared. 

     My goal is to go to any event on Memorial Day I can. Usually my NA groups have a picnic. If I can my goal is to try to go. At least for an hour. Or at least do something. Will I be successful? I hope so. Time will tell. I have to pee again so this is bye for now! Stay tuned for daily updates!

     

My twin flame is lost

When will I ever be able to go a day without the day I lost you running through my head. It rises the bile into my throat, the panic, the fear as I watched them run into your room. Hearing the sounds, lights, running. Them bringing us to a room. Numbness prayers. Disbelief. I replay every second of that day, could I have done anything? It looked so good. But it took a wrong turn. I always end up with tears streaming down my face, broken hearted. I feel like you took part of me with you. There's a hole inside my soul that can't ever be patched. I tried. I tried to numb it. Work, until I got fired for losing it at work, psychiatric hospital for a month, desperately hoping to help myself. I just don't know how to go on without you. Still. Tears. Swallowing pain, trying to get by without the twin flame that I lost. Losing, you, losing me. God, why is that lump in my throat so big today? Everything I see or do reminds me of you. I want to escape but I can't. I will cry until the tears run dry, and I know I will be okay. But I need to know you are still out there in some form, watching over me. I need you. 

Chronic Illness is hard...

     Sometimes being chronically ill is hard. I am used to the appointments, the medications, the pain, the feeling like crap, what I am not used to, and what I will never get used to, is the fact others are disappointed in me because I need rest, or I can't do certain things. I am feeling like I would be better off if I just had no relationships with anyone,and just kept to myself. At least then I have no one to disappoint, and hearing the people you care about the most say to you that they are sick of you not being able to do anything, to be told that I am lucky I do not have to work right now, that I have it made and they wish they could have it as easy as me, well...it hurts. I really feel right now as though no one can possibly understand. I really do not feel as though I am anything right now to people but a bother. Someone people invite places out of it being the proper thing to do, but not really being into being with me because I can't do what they can. I dunno. I am very close to shutting down again, pushing everyone out of my world and being alone. It really hurts less.

A Note to Those Who Are Mad I Often Back Out of Plans

     I am so tired of people who are angry with me for having to cancel plans, or even forgetting them, or not showing up for them, especially early in the morning, or later evening. . I have flat out told EVERYONE I am sick. I have a rare, auto-immune vasculitis called Microscopic Polyangiitis, a painful adipose tissue disorder called Lipoedema/Lipedema, Sleep Apnea, and Mental Health issues. It is not like I have kept that a secret. 
     Early in the morning I am groggy and often have a hard time getting up. Why? I am on medications at night to help me sleep. It is called PTSD. In PTSD I have nightmares, horrible nightmares, so I take medication to stop them and help me sleep. Often these meds leave me groggy, particularly if I do not sleep well that night from pain. Horrible pain that hurts everywhere and NOTHING helps. Of course I also add vicodin on top of the meds I take for nightmares before bed, otherwise I am up all night unable to sleep, in pain and full of anxiety. 
     Anyway try this experiment...take Benadryl every day for a week. 50 mg benadryl in the liquigels. Take them right before bed. Tell me it is easy for you to get up and rush right out and do things. But start it when you are overtired after spending a night getting only an hour of sleep. That is the only way you will understand how I feel.

     During the day I attempt to do things to secure my future, and keep me alive. I pay bills, shop for food, go to appointments, undergo medical testing many times a month, study for school, do school work, go to classes if I can, and try to go to my meetings. By the end of the day, I can barely walk, even with pain meds. I often pull myself into my vehicle and cry because I can not move. Here's how I suggest you learn. Get a pair of spanx, but get them two sizes too small. Force them onto your body. Then you can feel what it is like to not be able to breathe, and to hurt when you move.    
     Also take many ace bandages, and wrap your arms and legs and feet...but wrap them just tight enough to where you feel sharp stabbing pain when you walk or stand. Cut off the circulation just a little, not enough to hurt your limbs but enough to make them hurt. Then leave them on, doing your normal day. Wear them all day for one week, only taking them off to shower and put them back on. Then you will understand the pain I feel as the day progresses. 

     Eventually you will not be able to walk. The pain will be so great that the minute you sit down, you will be unable to get back up to do your normal plans. Watch as you do whatever it takes to rest...desperately wanting to go to your friends, to do stuff, to take and make dinner for your family, to go to a movie...but you can't because the pain is so great, the fatigue is so immense (keep doing the benadryl too after all...I live with both).

     Next add on something that causes nausea. EXTREME nausea. I dunno what is safe to take that can do it, but if you know take it. Now try to go on about your day with the bendryl in your body, the wraps and pain, and now nausea. Add a rubber band on your head, and feel the pain and pressure of the head pain.  While you are at it, why not put on a mask over your mouth and nose in addition to everything else. That mimicks the hard to breathe and lack of real oxygen in your body. 

     Now, do all of this and then you can come at me angry for me not making it to things I have planned. Because only then will you kind of understand why I do it. I am not doing it to inconvenience you. Trust me, I would rather go to events, meet with people, go to church, go to people's homes, go to movies, go to the fair, walk, etc than deal with this crap I do every day. Maybe it is high time you all get off your high horses and start to see something as it is, not as you think it is. 

     And for the record, if you are angry I don't make it to something talk to ME. Don't badmouth me to others in my life. That makes YOU a jerk, not me. I ALWAYS find out. And it pisses me off. I don't do it to others. If you bitch about me to others it solves nothing. If you talk to ME you might understand what happened and why. Am I angry? Yes. I am tired of  people treating people like myself like dirt. Take time to understand. 
     After all you will find that we understand every time something comes up with you. We understand when you are sick. Of course we understand what it is like to be shunned and gossiped about. But trust me, it is NOT about you and how we just don't wanna do it. Far from it. It hurts us more than it ever could hurt you.

Update (again)

The above photo is the medications I take on a daily basis. I must say that it is annoying being sick all the time. I have been stuck in bed much of the time, unable to stay awake. Chemotherapy meds have caused mouth sores, nausea, and such severe fatigue that I can't even sit up at the computer. I hate this, but people die from this disease. It killed actor Harold Ramis of Ghostbusters recently. I need to keep fighting because of that fear of death. It is getting better now however.
I have been horribly behind on my school work, but I am catching up slowly. Two of my three professors are allowing me to submit my work I am behind on for full credit, and that is helping. I hope the third one will allow that as well, as this is extremely difficult to juggle to start out. I am pretty used to the chemo meds now, and I am feeling better despite everything. I have caught a cold however, and I have to watch that. A cold for me can kill me due to my immune system. Back to the doctor I go tomorrow!

A new update is my mobility issues have been attributed to another disease called lipoedema. It is abnormal fat cells, a disorder of the adipose tissues in the body. It leads to huge fat deposits on your legs, thighs, butt, and sometimes arms. Often mistaken for obesity, this fat is not responsive to anything, diet, fitness, even bariatric surgery. It is essentially forcing my body to live in a fat suit forever. It sucks major! There is no cure, but the compression wraps and surgery can help ease symptoms. We will see if I can gather the funds I need to get surgery. As for now that is my legs (above). Lipoedema can make you look fat. The worst part is it happens to abnormally thin to obese people. It is not a disease of obesity, but a disease of the adipose tissue.. I will post a few pictures about it below. Anyway I hope all is well. Much love!

More lipoedema photos:

Lipoedema Stages 1-3

Lipoedema Legs, Typical Manifestation

Buttocks and Leg Fat Deposits 

Lipoedmea Fat

Lipoedema STages 1-3

Arm fat in lipoedema

Sleep Study, Thyroid Fun times, and REMISSION!

So, I went inpatient for a sleep study. It was creepy being hooked up to literally 50 or so wires. I had to have a cannula in my nose, with a small microphone by my mouth, and an oxygen sensor on my finger. I have been having major problems with staying awake lately. It had gotten so bad I haven't been able to keep up with school work deadlines. I literally sleep so much, up to 20 hours a day at times, that there is not time to do the work. Thank goodness my professors have been wonderfully understanding! I am behind but I WILL catch up. Anyway, I became so depressed that I was ready to give up. After all, in my mind I may as well give up if I can't live my life anyway. Fortunately I went to the doctor to discuss these issues, and they took a thyroid test and stuck me into a sleep study. My thyroid was 4.37, which is within the normal 5.0 range...and one doctor dismissed it as I Am fine. I went to my other doctor who said the prednisone actually can artificially cause a lower TSH level on a test, so my 4.37 in reality could be more like a 7.0 or above, but is masked from the meds. The endocrinologist confirmed that, so they are getting me in for thyroid help very soon. Hypothyroidism makes you tired, cold, gain weight, your skin is dry, you lose hair, get a hoarse voice etc...all of which I have.
Anyway, during my inpatient stint Wednesday/Thursday I kept waking up. I honestly felt like I hadn't slet at all, and then they came in and woke me up. Evidently my breathing does not stop, but gets so shallow my blood oxygen level rapidly drops. It was to 80% and they decided to intervene before it went lower. They were not going to chance letting it go to see how low it does get. Anyway they stuck a CPAP machine on me, with a cannula type mask/nose prong. It was amazing. I slept all the rest of the night, about 6 hours. I had my first dreams in awhile and woke up refreshed. Now I am home again and I am back to tired all the time. I have to wait for the recheck appointment in a week to most likely get the prescription for the CPAP machine. I hope that these two things being taken care of, the thyroid and the shallow breathing at night will help me get back on track.
On a neato note, I am in remission (beginning stages) of my Microscopic Polyangiitis. They are going to start with lowering me off the prednisone first, then the methotrexate will be switched to imuran. We will see after awhile on that if I can get off the meds, and if I stay in remission or have another flare. This will be my second remission. With this comes the working on repairing the damage the illness has done to my heart, lungs, body. I will be working on Physical Therapy to strengthen my muscles which are terribly weak and prone to injury. I am goign to therapy for the lymphedema I ended up with in my legs. I am going to the weight clinic, and lung doctors to try to get my lungs and weight under control again. This disease is not actively producing the damaging proteins to my blood vessels right now, so I have to play repairman to my body now. It's rehab time, and it is going to be hard work, but I can do it. 
What does the future hold? Right now a nap...then hopefully I can finish my homework. Until then I hope you all are doing good. Much love.