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