Circles and Second Guesses

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Well, it has been a positive and productive week. I meet with my counselor tomorrow, and I have to bring pictures of my newly finished yoga retreat (the spare bedroom turned zen den) and I am supposed to bring my inspiration board with me. I don’t see the reason behind having an inspiration board, but it’s part of the program, so I am doing it. So far there are a couple of positive quotes and some photos of my cats, my parents, my best friend in the whole wide world, and of course my boyfriend. I really don’t have a clue what it is supposed to look like or entail, but I put things on there that inspire me to be more positive and things that make me happy and a goal or two I would like to see reached in the near future. I hope I am doing it right.

I did a bad thing today. I went to a store, called ULTA, and purchased a foundation makeup for three times what I normally spend. I have never looked so good in my entire life. Oh my god it is an amazing store and I want to try everything in there! Benefit Oxygen Wow in Ivory is my shade. I also got some under eye camoflauge and a mascara called Perversion by Urban Decay…. For once, I don’t have raccoon eyes or mascara flaking into my eyes. I feel so girly! But I really shouldn’t have spent that kind of money on myself. But this stuff has ruined me. I cannot go back to drugstore makeup ever again. I also picked myself up a box of hair color. I don’t have anyone to help me apply it, but as soon as I can find someone, my roots are gone! Splurge a little on myself, feel guilty, look beautiful, feel guilty, it’s a vicious cycle.

I feel like people are avoiding me. My cousin’s wife who usually calls me twice a week isn’t answering my texts or calls. I have seen her once in the last two months. I don’t want to assume it is something I did or said, in fact it would be arrogant for me to assume it is because of me. I just hope whatever has come up is a good thing and she’s been busy for good reasons. My best friend has been avoiding my texts as well. I try not to call her often because she works a lot, and she’s a busy gal in the midst of a health crisis of her own. But I am frustrated by her self pity trip. She acts as if it hasn’t happened to any of us before, and I just want to shake her and tell her I invented the handbook on autoimmune disorder. But I won’t. I will be the supportive friend, there for her at her leisure, with a shoulder to cry on. I love her, and I need to remind myself that I should practice patience when dealing with everyone. I remember what a fresh diagnosis feels like. Hell, I got several fresh diagnosises myself and the only thing that has prevented me from a MS diagnosis too is I can’t afford the MRI on the brain. PATIENCE, EMILY. Breathe in, breathe out, let it go.

In other news, I am currently deliberating on letting an acquaintance go from my life. We have been friends for a long time, but we have never met in person. He has never crossed the line as a platonic friend. But the last couple of years our friendship has been strained. I have grown weary of his complaints and topics of conversation. I long for deep connections with people, and he keeps topics so light and superficial they just flow away. He asks how I am doing, and I say I am fine but…. and he always interjects my attempts at a deeper connection with the same superficial complaints. The only thing we have in common is tattoos, and even those we have differing tastes on. We used to have meaningful conversations, and I have the feeling he has only remained active with me out of his feelings of obligation. I don’t know how to do this properly, or do I continue the fake dance of shallowness we have been doing for a while? At what point to you decide if one is a toxic friend? And then I have to wonder, am I imagining things? Is this part of my mental illness?

I absolutely hate second guessing myself. I do not find it entertaining to have these kinds of thoughts and suspicions. The dialogue in my head has been positive lately, and being in straining friendships and awkward social encounters does make me wonder if there isn’t a common denominator to it all (me). I have done a plethora of research on schizophrenia and bipolar disorder, reading medical journals and sifting through publications. And I have to admit I am extremely judgmental of myself. To a crippling fault. I can be so kind and patient to other people, even if it is at a cost to my own comfort. Why can’t I show myself that kind of compassion? Strict standards is what I hold myself to, and anything short of perfection gets my inner dialogue set to being hypercritical of myself. I would prefer to be mindful of this and start a more loving and caring dialogue within myself.

Enough with this rambling on. I am typing myself into one big circle and even with all these words I am barely making sense. My plans this week are seeing my counselor tomorrow, diabetes class on Wednesday, chemotherapy on Thursday, and Friday, I am taking as a “me” day. Nap, at home manicure, hair color, chocolate, rum and cokes, facial, general spa day. Oh, and all the chores every day but Friday. Friday is my baby, Friday is MINE. As always, thank you for reading.

A Stitch In Time… CBT in action!

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Normally I try to stay positive, but I have no outlet to vent and I need to blow some steam off. There’s many things that have recently been bugging the piss out of me. I don’t know what has gotten into me today but seriously, it seems like every thing I touch falls to shit. I’ve been clumsy. I’ve been negative. I’ve been frustrated.

The last 3 weeks I have been playing “taxi” by giving my Pops a ride everywhere. To work, home, to the store, to the clerk’s office, to the bank, everywhere. Its been eating a huge chunk out of my personal time. Now, I know I should have more respect for my father than this, and I am showing a sorry example of gratitude for supporting me for 17 years, but DAMN. I really look forward to 5:30 when my boyfriend gets off work and we can sit down, relax, and talk. Being gone from 6 to 8pm every evening Monday through Saturday, 10 to 12 hours a week, of my personal space and routine, down the drain. I need to be selfish and boo bawl about this situation. I am a creature of habit. I prefer to spend my evenings quietly enjoying the little things in life. I think for fathers day I am going to fix his car for him. Even if he doesn’t have a license, Momma does, and she can take him places. It is a very passive aggressive gift, and a selfish one at that, but it would make their lives easier and be much more convenient for us all! Sometimes I really wish I had brothers and sisters to help shoulder the responsibility of caring for aging parents.

My cousin Cupcake is also on my nerves. He has epilepsy, and a very iffy memory of everything that happens to him. He needs daily reminders to eat, pay his bills, and basic coordination of care. He refuses to take medication, or get on disability so he could have professional help. He relies on me heavily to entertain him and care for him. I am getting burned out. Its frustrating, his brothers have basically shouldered the responsibility of his care onto me. I’m the only one left that truly gives a shit about him. He is very high energy and ADHD and bipolar and he sucks the energy from me like some sort of vampire in a novel. I really can’t afford to care for him, and the toll he is putting on my mental stability is frustrating and almost bothersome. Okay, in all honesty it is bothersome, and sometimes I just want to throw my phone across the room when he calls because I know he is going to ask me to drop everything and run the hour fifteen minutes round trip to pick him up, just to run him home when I pick my dad up from work and taxi his ass home. Grrr! All I want is a nap once in a while and a quiet peaceful evening full of silence and solitude.

I’m frustrated at my medical conditions. My pancreas has pretty much shut off it’s insulin supply so I am on an injectable insulin which I have to take every evening. I’m going to see an endocrinologist soon to see how abnormal the functioning of my adrenal system actually is. So I am officially diagnosed with type 2 diabetes, and there’s a strong possibility my diagnosis could be changed to type 1. My blood sugars have cut in half, and I feel I am doing better. But the injections every night combined with my Thursday chemo and my Sunday biologic it makes a lot of holes in my epidermis. But thus is the story of my health and my life.

My sex life sucks lately. Its not because of my partner or his willingness to please me. It’s all these mental changes and hormonal roadblocks I have been having as of late. I don’t feel it; I am just not into it. I just want to be able to feel sexy and eager to please. They doubled my estrogen dose at the beginning of the month, but all I have felt from that is some acne on my chin. I have tried and I have even taken two or three for the team, for the sake of the boyfriend’s sanity. I can’t get my head in the game. It could be my hormones, it could be all the mental changes I am going through right now, I don’t know. I want to have a sexy time with the ol’ man but I haven’t been able to have a gratifying experience since we got home from Vegas. And I’ve tried, ha, believe me I have tried.

I’m bored. I have a deep, empty, restless place lurking in my soul. I have a longing for something which has no name. I’ve tried to feel it with thoughts and things and places and experiences, but my soul aches for something bigger, something stronger, something incredible. I’m stir crazy, going mad with cabin fever, and I don’t know why. I long for authenticity and intrigue, a connection on a spiritual level, a profound human experience. It’s a static that crawls up my spine and oozes from my pores like sweat on a hot summer day.

And there’s a laundry list of other things that bug the hell out of me but they all seem so trivial when I take a step back and look at the bigger picture. It’s a frustration with myself that is bubbling up from within and permeating other areas of my life. Wow, I cognitively realized why my life has been out of skew for a few days. Its positive proof that therapy IS working. I am going to meditate on why I am letting inner frustration affect other areas of my life. I prefer to not let negativity into my thoughts and actions, but it is okay that I did. I am allowed to have a bad day, I am not allowing myself to dwell on it or become preoccupied with it. I wrote it out in a journaling process and caught the real reason. And I am going to take steps to let it all go. Be kind to myself, be patient with myself, and love myself.

It’s Been a While

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Good day to you, may I offer up an apology for not writing in two months? I have some really great reasons and it’s not just excuses, there are real and fantastic reasons. I have been manic since the beginning of March. Since I started feeling better, I have accomplished so much in my life! I have shed many possessions and rearranged the house. I have made great progress in therapy but I have been meditating on it instead of writing it down.

Yes, I can sort of meditate now. Darling boyfriend made me a “zen den” out of the former guest bedroom. Complete with a bookshelf full of books I would find interesting and a huge mirror to practice yoga in front of… It’s quite weird to have a room as my own, with only my energy resonating within. It’s a great place to stretch in the morning sun, and contemplate who I am and why I came to be this way.

Therapy has been spectacular. I really click with my therapist and she has earned my total trust. She isn’t going easy on me, either… I have 20 questions I have to come up with answers to, and it’s led to a lot of self discovery. For example, I do realize that at the core of my self obsession is feelings of guilt and unworthiness. I was asked to meditate on the question, “Why are you not worthy?” I worried about it for 5 days before I came up with a solid reason that made logical sense. No one event or person or situation left me feeling that way. I can’t pinpoint when it happened or why, and I have an astute memory. The only logical thing I could come up with is that feeling unworthy of everything was a lifestyle choice. I had never slowed down enough in my negative thought patterns to say to myself, “Emily, you deserve this as much as anyone.” It had simply never crossed my mind. Instead I hung on to the familiar feelings of shame and guilt and self loathing, wearing them like an old holey shirt from college that I couldn’t bear to throw out. I haven’t quite thrown the comfy shirt away, but I did remove it from my wardrobe and put it in a box in my closet. I am looking forward to a new wardrobe, one tattered and battered piece of ego for shiny new thought patterns one piece at a time.

This week, I am to work on answering the golden question, Why am I inclined to undermine my own efforts to live a more pure and authentic life? Again, it reinforces the notion that I do this because it is a familiar pattern. I know what to expect, self inflicted emotional and mental abuse. These feelings trigger the reward center in my brain, and the comfort of the familiar usually overtakes any new (and uncomfortable) positive feelings and thoughts. The cozy shirt theory. I know I would look better and feel better in a better article of clothing and I deserve a “new shirt” from the mall instead of an old tattered shirt passed down or found in a thrift store. I deserve to allow myself freedom and happiness. I prefer to put my energy and efforts into learning a new way of living. I do not prefer to wallow in misery. Negativity takes so much more energy to produce than positivity. And I am trying to be patient with myself. As children cannot learn to read in one day, my evolution will not be overnight.

Reading back on my old posts, I thought I was excited to be on the precipice of major changes. I cannot believe the momentum positivity gathers as it goes from a simmer to a rolling boil. I am thrilled beyond belief. I can see the tangible changes within my thought process. I have become more accepting of myself and my limitations. I have become more aware of my self deprecating thoughts. I am learning tools and coping mechanisms to deal with my mental and physical limitations. And every day that passes, I am becoming more and more hyperaware of the symbiosis that makes up my personal terrascape called my mind, body and soul.

I will make it a point to write about my thoughts and feelings and progression in my journey. I wanted a scrapbook of my change in paths, and I won’t get that unless I put effort into it. Thank you for taking the time to read my post.

A Poem

Stars shine bright this crisp spring night
The cats are in their bed.
The gentle banter of good friends
Runs in and out my head.
It’s a gathering, laughter abounds
The beers flow freely for the men,
The bowls for one and all
And talk turns to summertime
And all the things we will do
And all the places we will go
And all the people we will see.
And all the dreams we will have
That this is the year things happen

A lull in the conversation.
A click of a bottle cap echoes from the kitchen.
Again we roar with laughter.
I’m tired.
It’s only 10:30? Oh my.
Welcome to middle age, sunshine!

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Negative to Positive, Shifting My Perspective

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Well, it’s more doctor appointments this week. I meet with the pain clinic today, in about an hour and a half. I have a mammogram on Wednesday to see what these lumps are in my breast and and armpit. I meet with a surgeon on Friday, to see about closing a fistula that won’t heal (yay butt surgery)… And I get to see my counselor tomorrow for the second time. Also, Thursday night I have a class. It is going to be a busy week for me.

I got to see my best friend this weekend. My soul now feels at ease physically seeing her and hugging her and crying with her. I do feel as though she’s the cuter, younger, smarter sister I never had. My parents see her as another child to them. And although our visit was short, and she brought her boyfriend and his daughter with her, so it’s not like we had any alone time, I think it did my soul better than any prescription could in the way of feeling better. I love that woman. She’s an inspiration, and she makes me want to be a better person.

I am a little nervous about the pain clinic, it is my first visit and I have no idea what to expect. I do know we have some strict laws about opiates in our state, and those are the only things that work on my breakthrough pain. But I am not a candidate for narcotics treatments because, well, if they test my urine or blood for illicit drugs, they will find I test positive for marijuana. If you test positive for any illegal substances you cannot, by law, be prescribed narcotics. Which I understand, pill seekers and other drug users have ruined it for the people who medicinally use weed.

It gives me an appetite, reduces anxiety, and elevates my mood and sense of wellbeing. It calms the intestinal spasms and dulls the aches and pains of swollen ligaments and tendons. It greatly reduces my need for pain medication, and the side effects include dry mouth and absurd giggling. Better than the side effects of anything anyone could prescribe me. It is effective for me, and just because we don’t live in a legal state, I am going to have to choose between pharmaceuticals and Mary Jane.

I did get my homework done for Tuesday, but I have not done all of my homework for my new job. I need to write up a writing sample to apply for the job of social media consultant with the education side and the retail side of the business. I also need to print some stuff out, as well as run some research and development for the education side. I am excited about the opportunities this job is giving me. And to clarify, it is a volunteer position at this point, but I will be compensated for any curriculum I write and any materials I need for research and development.

I have been practicing mindfulness, and catching myself with negative thoughts and redirecting the negativity with positivity. It was hard at first, but research says it takes 21 days to make anything a habit. I have two more weeks and it should be a habit to look at the bright side of things. I am optimistic about this cognitive behavioral therapy and mindfulness redirection. It is going to come in handy when I quit cigarettes, and in just about every other aspect in my life. I think I really like my counselor. She’s really mellow and thorough. She jumps back and forth while talking but she seems to get a lot of information out of me. I know it takes time to establish your background and what makes you tick when meeting with a new counselor, so I am not going to gage my treatment just yet. But seriously looking forward to the positive changes she is bringing into my life.

Speaking of changes, there are some big changes coming to my life here shortly. Today is not the time to go into details about these changes, but soon my whole world will be turned upside down. It’s like waiting for a tattoo, I know the needle is coming for my skin, I anticipate it, I know it’s going to hurt, and all I can do is sit there and wait for the tattoo artist tune his machine, with my eyes closed and my heart racing. I hope it is much smoother and painless than I expect it to be. Rather, I hope the tattoo is on my upper outside arm, not the elbow this time. (Tattooed folks will get the analogy.)

Well, I should post this and get ready for the pain clinic. Check back often for updates on my life, opinions, trials and tribulations. Thank you once again for reading; I do appreciate your time. Also, feel free to ask any questions or comment, interaction is always encouraged! Have a great day!

 

A Productive Weekend

The last two days have been an amazing whirlwind of activity and ups and downs. Tonight I sit here reflecting on events and doing some research, and thought I should write a little to clear my mind. I guess you could call it a meditation for my fingers. It started on Thursday. I met with my rheumatologist and I had a list of questions to ask him. Turns out my paper diagnosis is fibromyalgia! Which is quite funny, I didn’t even know I had symptoms of it. I mean, I know about the Crohn’s Disease, I know about the connective tissue disorder, I know about all the side effects that come with the medications to deal with these issues, but I had no idea that I have fibromyalgia.

So I asked the doctor what signs and symptoms to look for and when should I seek treatment? He looked at me in disbelief and said, “Now!” Okay, I wasn’t even aware of a problem. The people I have known with this diagnosis were in incredible pain and lived with great difficulties. Now I am not new to health issues (I’ve always been sickly.) And I saw them taking copious amounts of narcotics in all sorts of pills and patches. I don’t want to be a pill junkie! I meet with a pain management doctor on Monday. I really hope they don’t want to shove more pills down me. I ended the day with a chemo shot. It made me tired and woozy, which is normal. I was so tired I couldn’t rest well.

On a side note, it seems my blood sugars are horrible, and the other doctor wants to put me on insulin injections. I asked her kindly if we could give it a few weeks on an oral medication and then recheck my blood sugar levels before we resort to something as drastic as injections. Hell, I already take 8-10 injections of methotrexate and humira a month. I don’t want a daily shot playing with my hormones. Am I wrong to take a wait-and-see approach? I don’t know.

Friday brought a surge of frustration and anger, so I flung myself into cleaning mode. I spring cleaned the entire house. Spare room, dining room, and my bedroom too. It’s amazing how filthy a little old farmhouse can get in 6 months! I could have knitted an afghan out of all the black cat hair I cleaned up. I started at 7 and was done by noon. One of my good friends took me to lunch, and roundabouts 630 I was out on the porch smoking a cigarette when I heard someone pull into my driveway. I step out to see who it was and lo and behold- my best friend from Seattle was walking up the driveway! I haven’t been in a physical proximity to her since last July.

We hugged and bawled for about 5 minutes there in the driveway. I’m not exaggerating. It felt so good to be near her, especially after nearly dying three times this winter and her new diagnosis of MS. We stayed up talking and laughing and crying, and then this morning she got up and left again, only passing through town. But I am eternally grateful for every minute we got to spend together. I feel special that she planned to spend the night at my house, when she could have driven on through town. I love her with my whole being. I wish she was my sister. She IS my sister. Bobie.

Saturday, today, I had my first day at my volunteer gig. I was taken on to come up with and road test curriculum for a student education program. It is based in technology, and that I get to test run experiments and write curriculum thrills me beyond belief! Today we did what is called a deconstruction lab. Basically, we sit the kids down and coach them through deconstructing laptop and desktop computers. It was slow today, with only 8 or 10 kids coming in, but I did meet a few delightful young people who are redefining the world of technology. One was 9 and a savant when it comes to computers. The other was 6 and perpetually talked about Windows 95 and how he was going to write his own operating system that will work an all machines, regardless of their manufacturers. This kid was absolutely brilliant and inspires me to take passion in what I find interesting. It was a great first day at work!

Tomorrow is a day of fun and relaxation. I get to work on an inspiration board. I am having my pops print out several images I put together, and he’s bringing them by tomorrow and I get to cut and paste and tape and glue and make it all sorts of pretty. I’m excited to get my creative juices flowing. Also, mom and pops are sticking around for dinner, and I am making my specialty of biscuits and gravy. It’s going to be a very relaxing and low key day. Which I need a low key day. I have been on the go-go-go every day for like 2 weeks. I need a recuperation day. Maybe I will get to sleep in!

All in all this was a very productive week full of celebrations and setbacks. I sit at home, 930 on a Saturday night, in my pajamas, counting out my medication, and waiting on water to boil for sleepy time tea. Next to me sits a wonderful man who would do anything to make me happy. On the other side, a 30 pound black cat named Remington who likes to purr when he eats treats. I will rest well satisfied with my accomplishments this week. Thank you for taking the time to read my blog. I truly do appreciate it.

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A Positive Outlook Today, March 11, 2015

Well, I am officially a volunteer on the education side of a recycle and upcycle nonprofit. I start on Saturday! I am really excited about this opportunity, and to be teaching something to children is awesome. Also, I might be hired on to paint the lab like a galaxy and organize the offices and lab room. Right up my alley! I am super excited.

This evening, I worked on my positive inspiration board, per yesterday’s homework assignment from counseling. My favorite uncle came over for dinner and a few snips of tequila. Today I hung out with one of my favorite cousins, and we had lunch at a New York deli. My few things came from Amazon today, and when I laid down for my nap, I actually fell asleep for the first time in months. It was heavenly and quite refreshing!

I managed to stay positive all day, despite creeping feelings of doubt. I visualized the negativity evaporating off of me, the way a wet fence will steam in the sunlight on a cold morning. It worked. My optimism was so contagious, both my cousin and my uncle gave up their grumps and decided to laugh with me instead. I know there will be days that it will be an uphill battle to stay positive, but once I get my inspiration board physically put together, it should be easier to have something to meditate on when I get to feeling blue.

Something from the counselor is not sitting well. Actually, it started before she even mentioned anything. A month ago, I was taking 22 pills a night along with 2 injections a week. Now that I am tapering off some medications, my pill pile in the evenings is getting much smaller. But I would like to talk to my doctors and see if I can reduce the amount of 12 medications a day to 6 medications a day. It’s not all for my mental illness; most of them are from having organs removed and needing to medicate the body to still function properly. But the physical illness I live with is for another post, another day.

I meet with the rheumatologist tomorrow. I don’t know what he plans on doing, but I have a few questions I am unclear about. I am grateful for the opportunity to learn more about my conditions, and how to manage them. My joints are still weak, especially my left hip, both knees, and right ankle. It is hard for me to ascend a staircase. I can go down stairs just fine. It’s going up stairs that turns me into a wobbly pile of mush.

Well, that’s about all I have to write about tonight. Short post, yes, but I am tired and I am going to indulge in the opportunity to go to bed early. This whole sleeping again thing is great! Damn prednisone, turning all us inflammies into raging hungry insomniac. Thank you for taking the time to read my blog. It is nice my voice is being heard. Questions? Comments? Everything will be replied to. Have a great evening!

 

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