November 16, 2013

The school district here recently implemented a total ban on nuts of all kinds. This is, of course, in order to avoid accidental anaphylactic shock, because that’s often fatal. Bean doesn’t have any food allergies but plenty of other kids do and I can imagine that this new policy is a huge relief for those children and their parents. 

Here’s the weird part: My doctor is quite young and new to her practice. She replaced a much older doctor who retired. There is only one other doctor in the practice, who I have never met but who is in her 70s. For some reason she was asked by the local newspaper to share her view on the school nut ban. 

Her view is this: The nut ban is dangerous because nuts are good food and so a nut ban will cause eating disorders. 

Never mind that the nut ban in no way dictates what anyone can eat outside of school. Those who are so inclined are free to eat all the peanut butter they want — at home. Never mind that an eating disorder is a mental illness that is more about control than food. 

I wouldn’t even care except this is the same doctor who sent me to the ER over the summer, because - according to her - I had to detox. It turned out that wasn’t the case. I spent several hours at the hospital but everyone I met in the hospital was clear: Detox was not appropriate for me. I was never admitted. 

That was several months ago but I’ll never forget that night in the ER. I was treated like a drug addict from the moment I walked in until the moment my blood work came back. At that point they wanted to know why I was there and who had sent me, because wow, who asks for detox when they don’t need to? 

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October 30, 2013

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July 13, 2013
Saturday Seven

1. My mother was kind enough to take some pictures of me in my Wonder Woman shirt using an actual camera. They are way better than the photo booth shots I posted a bit ago, but I don’t do photo spam anymore so WEDNESDAY.

2. My dad just sent me an email that he signed “ODB”. I really wish he’d stop doing it. It was hilarious the first ten years, but now… Not so much. 

3. Tumblr clothing swap. Ruminating. 

4. Technology has not been my friend this week, so I’m going to mount a campaign to steal her boyfriend. 

5. The other day I was at Barnes & Noble looking for neuroscience and/or Java books, and lo! I saw Hello Kitty bookends. Too bad they were pink. I have nothing against pink I just don’t want to wear or decorate with it. Unless it’s a breast cancer pin. 

6. The color for fibromyalgia awareness color is purple. Am I on Candid Camera or what? 

7. This morning I went into Bean’s room to wake him. The first thing he says is he just figured out what bras are for and will I go put one on please?

July 11, 2013
[This photo because it was an accident but I thought it was beautiful and it reminded me of trelvix’s work, except missing the word poetry. I showed it to him. He said something both sweet and humble and that’s one of the last times I “spoke” to him.]
Totally unrelated BUT VERY GOOD NEWS EXCITING story: Just got off the phone with a former client. Really great guy. Sort of like an Elvis according some of his students. (I don’t think they’d appreciate the comparison but it’s 100% accurate unless you’d rather I start talking about the Donny Osmond, Danny Partridge, the Jackson 5.)
[Please also note I said an Elvis, not just plain Elvis. Metaphor. I apologize in advance for being an asshole and not editing but not really sorry, no.] 
Anyway. I just got off the phone with this guy and I feel like I just spent the weekend with a holy man. My former client, whose name I’m not going to share, told me that he is usually able to solve the problems of anyone he cares about by writing a check, that he realizes he can’t this time, and if I ever think of something else he can do, please let him know. 
I also told him that last January, at the first class of his I attended, the first thing he and his co-teacher did was ask us to write what we were hoping to get out of the training we were about to start. I wrote down that my personal goal was “authenticity”. I knew what the word meant, but I don’t know why I wrote it. It was a “muse” kind of thing, which usually only happens when I’m freewriting. It knew it was worth exploring. 
But I started thinking about it that week in January 2012 and looking at me now, I’m closer than I’ve ever been. To authenticity. Living an authentic life, even though I’m not yet totally sure what that means. What that means and how am I going to get there. And former client and co-teacher taught me how to shed my armor and get there. I made sure he got that.
Former client also offered to help me financially. I assured him Bean and I are comfortable as long as my parents and brother are here and my dad is nearby and that they are all helping me, each in a completely different and totally necessary way. We are in no danger of being homeless and hungry, I said. He had me promise I’d call him directly if that changed or something unexpected came up. I agreed. I asked him if it would be OK if I sent him holiday cards ever year. He seemed to really like that idea, and now, for the first time in my life, I’m going to send holiday cards.
Other positives I told him and should tell you: I’m getting the medical care I need, including physical therapy, which is going to change my body. I’m still young and strong enough I can manage my pain simply by relearning how to *really *listen to my physical self. (I assume most people do this naturally, but what do I know. Maybe we’re all makeshift.)
Did I mention that this was scheduled phone call I’d been dreading? And that this was the resolution of a situation that’s been eating away at me since January. Well, he called and I saw the call in time EVEN THOUGH THE RINGER WAS OFF. I answered, and after we finished with small talk I went straight to the heart of the matter and cut away everything unessential and said yes, I checked out the second half of February, because I knew my contract wasn’t being renewed and it was childish but my feelings were hurt because I’d been so committed to the project. Also, my health problems took a bad turn around that time. We talked like that, for maybe 15 or 20 more minutes. We agreed that he’d pay me for the second half of February. I told him didn’t have to. He said it seemed fair to him. So I agreed. Then I told him a little about what was really going on with me personally the second half of February. Not as an excuse but as an explanation. Lots of realness. And I guess that’s why I feel like I was just in the presence of a shaman. Because he’s really that good. 

Authenticity. Authenticity. Authenticity.

[This photo because it was an accident but I thought it was beautiful and it reminded me of trelvix’s work, except missing the word poetry. I showed it to him. He said something both sweet and humble and that’s one of the last times I “spoke” to him.]

Totally unrelated BUT VERY GOOD NEWS EXCITING story: Just got off the phone with a former client. Really great guy. Sort of like an Elvis according some of his students. (I don’t think they’d appreciate the comparison but it’s 100% accurate unless you’d rather I start talking about the Donny Osmond, Danny Partridge, the Jackson 5.)

[Please also note I said an Elvis, not just plain Elvis. Metaphor. I apologize in advance for being an asshole and not editing but not really sorry, no.] 

Anyway. I just got off the phone with this guy and I feel like I just spent the weekend with a holy man. My former client, whose name I’m not going to share, told me that he is usually able to solve the problems of anyone he cares about by writing a check, that he realizes he can’t this time, and if I ever think of something else he can do, please let him know. 

I also told him that last January, at the first class of his I attended, the first thing he and his co-teacher did was ask us to write what we were hoping to get out of the training we were about to start. I wrote down that my personal goal was “authenticity”. I knew what the word meant, but I don’t know why I wrote it. It was a “muse” kind of thing, which usually only happens when I’m freewriting. It knew it was worth exploring. 

But I started thinking about it that week in January 2012 and looking at me now, I’m closer than I’ve ever been. To authenticity. Living an authentic life, even though I’m not yet totally sure what that means. What that means and how am I going to get there. And former client and co-teacher taught me how to shed my armor and get there. I made sure he got that.

Former client also offered to help me financially. I assured him Bean and I are comfortable as long as my parents and brother are here and my dad is nearby and that they are all helping me, each in a completely different and totally necessary way. We are in no danger of being homeless and hungry, I said. He had me promise I’d call him directly if that changed or something unexpected came up. I agreed. I asked him if it would be OK if I sent him holiday cards ever year. He seemed to really like that idea, and now, for the first time in my life, I’m going to send holiday cards.

Other positives I told him and should tell you: I’m getting the medical care I need, including physical therapy, which is going to change my body. I’m still young and strong enough I can manage my pain simply by relearning how to *really *listen to my physical self. (I assume most people do this naturally, but what do I know. Maybe we’re all makeshift.)

Did I mention that this was scheduled phone call I’d been dreading? And that this was the resolution of a situation that’s been eating away at me since January. Well, he called and I saw the call in time EVEN THOUGH THE RINGER WAS OFF. I answered, and after we finished with small talk I went straight to the heart of the matter and cut away everything unessential and said yes, I checked out the second half of February, because I knew my contract wasn’t being renewed and it was childish but my feelings were hurt because I’d been so committed to the project. Also, my health problems took a bad turn around that time. We talked like that, for maybe 15 or 20 more minutes. We agreed that he’d pay me for the second half of February. I told him didn’t have to. He said it seemed fair to him. So I agreed. Then I told him a little about what was really going on with me personally the second half of February. Not as an excuse but as an explanation. Lots of realness. And I guess that’s why I feel like I was just in the presence of a shaman. Because he’s really that good. 

Authenticity. Authenticity. Authenticity.

July 10, 2013
Perfect example: Hypersensitivity

titlecullensubtitle replied to your link
This is great. My oldest was diagnosed with fibro back in late 2011. It’s a very difficult thing to contend with. She is essentially hyper physically sensitive to most everything.

Perfect. Hypersensitivity is huge for me too. Many times it’s auditory. Other times someone accidentally gets me in the eyes with a flashlight and it HURTS. For the longest time, I thought I was just bitchy and difficult. 

July 9, 2013
Today was mostly a very good day. JSYK.

However. 

I love it when people complain that I don’t open up enough and then I start talking and they tell me that me I talk too much.

I love that almost as much as I love people asking when my chronic illness will pass.

Motherfucker, get a dictionary. Look up chronic. 

June 29, 2013

I’ve mended some fences since I got really sick. Got in touch with people I hadn’t spoken to in years. Let go of pettiness and tried to make sure no one would ever have to wonder if I’d really cared. If I still remembered the time with the thing in the place. 

I’ve also had conversations - mostly with my mother, some with close friends - in which we acknowledged the reality of what my life had become. Bittersweet. 

There are long stretches of time when I am perfectly fine, totally healthy. I even have good cholesterol. I eat and sleep well, I function professionally, I am a patient mother. 

But since November or so, I’ve been struggling with almost everything. It’s a long story. And not one that I’m planning to tell right now, I just wanted to say this: 

When loud noises hurt, when bright light makes you explosively angry, when you are in physical therapy because you need to relearn to walk, you start losing the power to control your emotions. You’re so stuck on basic needs. Can I shower today? Will I have to take a nap if I floss my teeth? Do I have enough energy to keep two doctor’s appointments on the same day?  

Somewhere along the way, you forget to be patient, considerate, thoughtful. You fly into rages. You burst into tears. On a really bad day, this happens several times an hour. You oscillate, and the worst part is there’s no real “why”. You know this is hard on the people around you, but you can’t help it, and you miss the signs. You don’t notice that no one really wants to hear you talk. Or you are aware of their distance, but you figure they know how hard you’re trying, and that this too shall pass. 

It doesn’t work that way. Not forever. 

Some people will never believe you could have gotten healthy if you’d really wanted to. Gotten healthier faster. Gotten healthier without complaining so much. As if you were malingering. Exaggerating. 

When I came back to Tumblr I promised myself it wouldn’t be to vent, endlessly, about the mess that is my life. But, here we are. 

I promise there will be sunnier moments to report soon. As a wise man said to me today: 

I know how you’re feeling right now, and nothing will soothe it for a while. Just do the best you can to get through each day, and some clarity and resolution will eventually come. You’ve been through waaaay worse in your life, and you are remarkably strong and resilient.

I have, and I am. I’m going to be fine. (I’m going to be fine.) If I go a little quiet, it’s because I’m regrouping, not because I’m going to disappear again. Pinky swear.

June 26, 2013
True story. (TL;DR)

Last night, after politics finally went to bed, I spent the rest of the night/morning researching painkillers. I needed something fast-acting, non-habit forming and without any hideous side effects. So I stumbled across a class of drugs that are similar to marijuana except they don’t have THC and you don’t smoke them. So, not really marijuana at all. A bit weaker, in fact, as far as I could tell, and maybe even safer. (Not that you can get much safer than ganja, but I digress.)

So when I called my psychiatrist to tell him I’d been up for three days and every joint in my body hurt, and what did he think about trying this drug, he told me he wasn’t comfortable prescribing that, he never does, and that I could try calling my regular doctor. Then he hung up. No other option offered. I was devastated. 

I’ve only met this guy a few times but this is not like him. So I do a little more research and find some fine print that tells me I’ve just asked my nice new doctor to prescribe me a controlled substance that is officially considered by the DEA to be more harmful than morphine injections. 

The IRONY here is I asked for this specifically so that I would not smoke weed while on all on pharmaceuticals. For me, it’s one or the other. I prefer herbs (hops, corydalis, valerian, etc.) but since I have health insurance they cost way more than weed, and dammit I was trying to do the right thing. 

I even taught myself how to make marijuana chocolate so I wouldn’t have to smoke up my lungs. But apparently I’d be better of on morphine, which is basically heroin, WHICH KILLS PEOPLE ALL THE TIME. 

Ain’t nobody ever died from weed. 

But no. Apparently synthetic cannabinoids are worse than morphine. And this is coming from the guy who (not exaggerating at ALL) wrote me a script for 150 1mg Klonopin the day I met him. 

Medicine is a game of darts, and the doctors appear to be drunk. 

June 23, 2013
And here’s the thing Mr. President.

If you’ve lost me, you’ve lost almost everyone. I’m a single mother. WOC. On Medicaid. College educated but disabled and un- and/or underemployed for most of the last decade, which is most of my adult life. I have a chronic illness and have given up most of my dreams. It’s not my fault I’m sick. It’s not my fault I can’t work. It’s not my fault that my Ivy League education is completely useless.

So I literally need the things you promised. I believed you would fight for me and my son and others like us. HeadStart. Food stamps. Reasonably priced housing. Quality public education. I believed you would end these senseless acts of imperialism. I even believed you cared about the planet.

I was wrong. 

I voted for you from overseas. Do you have any idea how difficult and expensive that was? I bawled like a baby the night you were elected because I was so happy. Yes we did!

Except no. No we didn’t. 

You’ve got some time left. Make it count. 

June 12, 2013

There should be an internet database of prescription medications and their side effects, etc., compiled by real people reporting their own experiences. CrazyMeds.us is great for psychiatric medications, but that leaves out too many of what I like to call “brain soup drugs”. For example. Anti-convulsants like Lyrica and Neurontin? We literally don’t know how they work, and yet people are I am taking them.

2:30pm  |   URL: http://tmblr.co/ZDfGaynBOIAr
  
Filed under: fibromyalgia musings 
April 3, 2013
Mom: We need to address your drug-seeking behavior.
Me: Drug-seeking? You think I'm an addict.
Mom: *shrugs*
Me: Would you say that if I "wanted" insulin? How about chemo? Would you say that about chemo?!
Mom: *tears up* I'm sorry. I get it. I won't say that again.
April 2, 2013
messy glory: thirteen things (yesterday edition)

1. I got up and took my morning meds.

2. Went to my cousin’s house for Easter.

3. Had a few glasses of wine. I know you’re not supposed to do this, but when i was only taking one pill a day it didn’t end the world.

4. I remember my cousin walking me through the garage to the car. (I was not driving.) They keep beer in the garage and I wanted one but she told me that I’d had enough. 

5. I distinctly remember getting home. I ate a piece of bunny-shaped cake with jelly beans in it. 

6. I have no memory of going to bed, but I must have because I woke up in my regular pajamas. 

7. But apparently I did because I woke up in my regular pajamas. In Bean’s bed. At 10PM today.

8. Also, there’s no way I slept last night, because Ron tells me I was texting and calling him until noon today. 

9. Let’s not talk about the orders I placed at GoDaddy.

10. My brother says I was up this morning too see Bean off to schol, but again, I don’t remember that. 

11. I missed my appointment with my therapist. 

12. Tomorrow I’m going to have to beg for an appointment for my doctor, and then I will go to her office and sob, like I always do.

13. I don’t have a psychiatrist because my old one retired. 

14. I don’t remember fourteen but editing fourteen is how I lost the original post. I am SO not speaking to 14.

The moral of the story is my brain is TOTALLY on top of SOME things.  

(via teatimefor2)

March 10, 2013
I had vertigo for 13 days. It’s over now, but I’m hoping that

this is the most sick I will ever be in my life. 

Forget vertigo. Forget that fibromyalgia episode from hell that felt like a 96 hour panic attack. Forget laying awake at night wondering what my neurotransmitters are plotting next. 

It’s over now so we move on as before, yet gingerly. With more deliberate care. I’ll be fine.

Mostly thanks to Ron, who is the best boyfriend of all time, I’m sorry I’m not sorry, he’s mine, you can’t have him.  

Anyway, hi. What’s up? 

February 9, 2013
TL;DR

My dad asked why I haven’t finished my disability application yet

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February 6, 2013
Almost forgot:

trouble typing on my phone AND my keyboard, extreme difficulty of ocular and mental focus, and these are side effects, not symptoms. 

The final straw was when it took me 10 minutes to dial the cell phone number that I’ve used to reach my father since 1999.