Archive for the ‘CFS’ Category


I have good news! Are you interested?

I went to my pain management and spine specialist last Wednesday after work. During the appointment we went over the X-Ray results for my hips and lumbar spine due to the exacerbated pain I’ve had since the fall my beastly dog caused on a walk. There was a concern that my hip fractured or broke.

I’ve mentioned before that my lumbar spine already has bulging discs. The X-ray was for just the lumbar and hips, and since my MRI during the summer, that’s deteriorated, likely due to the fall.

Neither of my hips, which have arthritis, are broken or fractured. That’s the excellent news. The arthritis, however, has also deteriorated and has done so more significantly in my left hip. That’s likely due to the fall.

I’m relieved that there aren’t any fractures. That means that we can take “putting a pin in it”off the table. That’s a huge relief. I guess now I’m wondering what my treatment options are, because I met with the APRN instead of the doctor. When I have pain that, in the moment, is at least a 10 what do I do? I can’t support my body when I’m standing up because the pain is so severe. I feel as if my skeleton is being ripped apart and shattered with a hammer. It’s scary, and it takes my breath away.

Since I’m 42 and never had a bone density test, I’ve requested one to be ordered. I know that it’s been an issue in my family, and with the arthritis, maybe it can help with therapy. I’m already doing aqua-therapy but anything at all that might help relieve this pain and I’m in. The APRN didn’t indicate that the degeneration is severe enough for surgery to repair the arthritis, so I’m guessing that’s not an option right now. And honestly I think that has to be a last resort.

It’s funny, though… my PT for aquatherapy seems to think that surgery with additional PT is preferable to additional medications. She has Fibromyalgia, too, so I’m assuming that she’s aware that every time someone like us has a surgery it further suppresses our immune system because the body has to fight so much harder than is typical to heal, and to fight off even simple infections and illnesses. We also have to cope with having all of the medications administered during a surgery coursing through us for months which affects the medications we’re already on. Anesthetics stay in the body for up to two years, especially when it’s administered in large doses.

I would rather exhaust all other options before considering surgery. Just like before I agreed to try pain medications, I exhausted every other possibility first. And sure… I kicked myself and wondered why I didn’t go to the pain management specialist years sooner when my PCP first suggested it, but this isn’t the same thing. I have a hard enough time healing from paper cuts. 😉

I know, I’m putting the cart before the horse. It was just a conversation I had with my PT on Friday. I’m just trying to work it out in my head a bit. And maybe the APRN didn’t let on how bad it really is. She’s been known to do that.

Oi. I need chocolate. Good chocolate. Better yet, I want someone to give me good chocolate.

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You know what I just realized? I write a lot about disability and advocating for disabled individuals. I write a lot about acceptance in disability, whether you’re a parent, friend, coworker, or even someone who has never met someone with a disability (that you know of); and yet I’m not sure that I’ve ever explained in the simplest of terms what a disability is.

I just get so fired up.

Disability is a physical, neurological, or mental condition that limits a person’s movements, senses, or activities. It may cause impairments, infirmities, and disadvantages, to performing activities in society due to the barriers that exist.

What I try to address is this:

Barriers exist not because someone is disabled, but because society as a whole hasn’t figured out how to:

  • Fully accept disabilities as normal and nothing to be ashamed about
  • Fully accommodate all disabilities and invest in the people who have them
  • Incorporate Universal Design so that ALL PEOPLE may participate in ALL ACTIVITIES equally

And those things are important because people who have disabilities are PEOPLE. People who are deserving of being treated with dignity, respect, grace, and equality to be viewed as valued members of society that contribute as equally as anyone else can.

This is a lesson that you’ll learn well when you become disabled through an accident, illness, or age if you’re not presently disabled. 🙂

 

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I don’t get paid to write this blog. I’m not good enough. So take me at my word when I say, as a very hyper-critical caramel-in-coffee-but-I-love-it coffee drinker that this is THEBEST salted caramel… nay, caramel creamer for your coffee. 

I say this, admittedly, as someone who already enjoys Natural Bliss. It’s the only one besides pure organic cream that I can drink in my coffee without contributing to pain issues and migraines.

I was skeptical about the flavor before buying because so many caramel creamers leave a weird aftertaste. No worries. I’m not buying any other caramel creamer brands now.
COFFEE-MATE Natural Bliss Salted Caramel Creamer 

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I don’t write about this often even though I’m sure a lot of you could empathize. Fibromyalgia and weight issues often go hand in hand.

The thing is, it’s usually not for the reasons you might think. There are many who have Fibro that are underweight, and can’t seem to gain no matter how much effort they put in to make sure they get a calorie packed diet. There are many who are overweight and can’t seem to lose no matter how healthful and active they are in spite of the pain.  I don’t know if people realize just how hard it is to have an appetite when you’re in moderate to severe pain 90% of the time. Pain suppresses the appetite. Many medications suppress the appetite as a side effect. With Chronic Fatigue Syndrome as a co-diagnosis, it’s hard to eat if you’re so fatigued you can’t even chew or blink, let alone cook a full meal or go grocery shopping very often.

The fact is that no matter how healthfully we eat and are active in spite of the pain and fatigue, we have to deal with the biology of the disorder and additional health issues and co-diagnoses that are part of the very real chronic disorder that has a mind of its own. We do the best we can when we can as often as we can. We just hope it’s enough.

I’ve been fat, and I’ve been slender. I’ve been in between too. People treated me better when I was in between than when I was fat. People treated me far, far, far better when I was slender than when I was in between or fat. Because due to Fibromyalgia, my weight blew up to 280 lbs on a 5’4″ frame.

Give me a moment to digest the fact that I’m divulging this sort of information.

When I was That Fat, people treated me shamefully in public. People, nurses, treated me shamefully in doctor’s appointments. People feel obligated to say nasty things about food intake and exercise, and apparent lack of willingness to conform to anything healthy yet have the nerve to complain about being heavy. It’s still acceptable to fat shame here in America because A.) people think it’s helpful to point out the fat and ugliness of it and B.) they think it’s motivational to be rude and mean and C.) some people just think it’s funny to shame people due to their size and act like bullies.

Since I started to lose the weight, in the typical Fibro start and stop fashion, I have dropped 85 lbs so far. This number is accurate as of 1 1/2 weeks ago. And let me tell you, I’m thrilled over breaking that 200 lb barrier. It took me six months to do that with tripled efforts, which means for me trying to fit in 2500 calories a day with as much full fat in whole foods as possible. I try listen to my body when the fatigue takes me down. Managing the pain, managing the relief so that I could move more easily has helped. A few months ago we got a wonderful new mattress so being more rested helps.

During all of time, with each 15 lb mark of weight loss, I see and feel a difference.

Oh, not a difference in how I feel physically. My pain is still there in full force and in fact I’m in far more pain than before I started to lose the weight I gained. That weight that never belonged there.

There’s a difference in how people are treating me and looking at me. People are offering me their places in line again. They’re smiling at me again, more smiles with each pound I lose. More doors being held open for me, where when I was fat, people made it a point of looking me in the face and letting the doors close.

There are people asking me if I need help. People are complimenting me out of nowhere lately on my clothes when I run errands after work. Strangers.

People are noticing my pain now. They are actually seeing my face. They see the pain in my face AND my body, and then they see my cane, and they’re kinder.

I’m not behaving any differently. I’m still me. The only real difference is my weight. This all feels good because I never realized before how kindly people treated me when I was slender. I sure did notice while at my fattest how poorly people treated me. I was invisible to many, less important. Even certain family members. Slimming out somehow is legitimizing.

That angers me a bit, but saddens me more. I think maybe I don’t need to explain why. You guys are pretty intelligent.

But guys… I’ve lost 85 lbs. I know I’m poopooing it, but I am happy about it. Maybe my pain isn’t better, but I know that my risk of Diabetes is down; my risk of Heart Disease is down; and even though I have very low cholesterol intake, my body was producing more bad cholesterol on its own while heavier. I was also drinking more coffee, though, which raises the bad cholesterol readings. Yes…. yes…. while still a coffee fiend I did reduce my coffee intake to two cups tops a day.

My next goal is 25 more. I know it’ll be slow, and that’s okay. If I never lost another pound but suddenly magically had Disney Princess hair, I’d die happy in old age (somewhere in the far future, I hope).

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Falling Down the Rabbit Hold

Falling Down the Rabbit Hole: Image found on Baby Steps on blogspot by Katelyn Elizabeth

What do you do when you’re falling down the rabbit hole, and the one person who should be able to pull you back is someone who seems to keep dropping pianos, shoes, lamps, couches, teacups, hats, dinner plates, and potted plants down onto you?

I need a new psychiatrist. Beginning and end. I’ve lost all loyalty because I finally realize that the amount of time I’ve spent there can’t be a reason I stay. Reminding myself that she used to be a great doctor with great advice can’t be a reason I stay. Liking who she used to be can’t be a reason I stay. Feeling in my gut that maybe she has something wrong in her own physical health or neurological health can’t be a reason to stay. In the past two years, she’s gone from: a great psychiatrist; to quirky; to OMG Who Is This Woman; to I’m Going To Throat Punch You Hard If I Stay.

The only reason I’m still there is because I’m having trouble finding a new psychiatrist and I need someone who will prescribe the two medications I take. I’m warning anyone right now, there will be cussing. If you have sensitive eyes or tend to clutch pearls when there’s an F-bomb then this may not be the post for you. I think there are more F-bombs in here than I’ve said or written in my entire life. I know God forgives me because he loves me. Baby Jesus might have a hard time with it, but he loves me too so he’ll eventually forgive me. As soon as my stove works I’ll bake him some cupcakes as an appropriate apology.

The reason I’m writing this post is because I needed to get it all, or most all of it, into one spot so that I can see it and realize that I’m not imagining things. I’m also writing it because it’s important for people to see others who are having issues with mental health providers that they’re not alone. Finally, it’s important for others who are experiencing mental health issues to see they’re not alone in having mental health problems, and it’s okay to talk about issues surrounding mental health and the mental health industry. We have to be the ones to change how we’re treated. We have more of a voice than we realize. We CAN self-advocate. We CAN’T wait for other people to do it for us most of the time.

 

Reasons To Find A New Shrink:

  1. She likes to talk about herself for most of the appointment and you still have to pay the co-payment
  2. She’ll even go so far as to walk you out of her office into the break area to show you all of her vacation photos to
  3. She sometimes confuses your file with someone else’s file
  4. She confuses YOU with other patients to the point of calling you a bad mother; too permissive; passive aggressive; not a good example to my children; and you know for sure she’s not talking about you when you’re ready to cry when she finally says that I’m “not strict enough especially my son” except, well, I don’t have a son
  5. She tells you that you have unreasonabe, unattainable high expectations as a complete and utter perfectionist about anything and everything, being rigid and essentially comparing you to Mommy  Dearest when moments before she told you that you were too permission, passive aggressive, not strict enough with your non-existent son, etc.
  6. I’ve been seeing her for 11 years now and she apparently hasn’t heard a word I’ve said
  7. She can’t read her own handwriting most of the time in my multiple files
  8. She complains about how Americans are very petty with the whining they do during sessions
  9. She mocks Americans for “all of the medications” they need when she figured out the proper foods and spices to take to get of any and all illnesses because apparently, ALL ILLNESSES ARE IN YOUR HEAD AND YOU CAN GET RID OF ANY PHYSICAL AILMENT IF YOU ONLY CHOOSE TO
  10. She used to consider herself a one-stop psychiatrist: Talk Therapy plus Meds-If-Needed plus Natural Methods and skills
  11. Not any longer; She seems to consider Talk Therapy beneath her and a waste of her time EVEN THOUGH SHE’S GETTING PAID
  12. She forgets to tell you diagnoses she’s made and lets them slip out such as diagnosing Fibromyalgia within months of beginning therapy with me but waiting until I told her when I got the diagnosis from two other doctors with, “Oh, I know, I diagnosed it seven years ago! See? It’s in your file.”
  13. In spite of physical, documented, scientific, medical proof with DNA and at the cellular level narrowed down to an actual thing of its own…
  14. AND Fibromyalgia having an actual physical MEDICAL diagnostic code of ICD-10 Fibromyalgia M79.9
  15. She thinks it’s a junk diagnosis and purely caused by uncontrolled anxiety a.k.a. it’s all in my head [when she told me that last appointment I said, “Yes, you’re right… the pain I feel in every nerve and cell and fiber in my body is interpreted in my brain and it destroys grey matter. And THAT is in my head but not the way you think it is.”]
  16. This is relatively new: She thinks that childhood traumas should simply be “let go, forgiven, and forgotten” and that’s the path to happiness, especially if you simply look at the situation from the point of view of the person/people who abused you
  17. She used to be nice to work for, based on observation; now she goes through office assistants like Post-It Notes
  18. This is very, very new: She thinks that the way to heal yourself is to simply choose to be happy; choose to never have anxiety again; discover the secret to perfect health and you’ll never ever be sick again and she has found the secret to complete health and happiness but SHE WON’T SHARE THE SECRETS, GUYS!
  19. She’ll share every detail of her life but SHE WON’T SHARE THE SECRETS TO COMPLETE HEALTH AND HAPPINESS!
  20. WHAT THE ACTUAL FUCK?!?
  21. I think she’s closing in on 75 and possibly flirting with Dementia because she’s had a complete personality change since I met her and it came on suddenly within the past two years
  22. She holds opposing viewpoints in the same conversation, sometimes the same sentence

 

At least she’s stylish?

Maybe I expect too much out of my psychiatrist.

That would be the old me talking. That would be the old me questioning myself and my  judgment. I may not stand up to her as much as I ought to, but I’m finding that the more angry she makes me the more I’m speaking up. For a while I thought that she was testing me. I thought she was saying some rude asshole things to me to get a rise out of me to see how I would handle it and if I could control my anxiety visibly. Telling me that pain is all in my head, searing screaming pain that requires pain management plus back pain due to injury, is really all in my head and reliance on pain meds is why pain increases. I reminded her scrawny ass how I was completely without pain meds except for occasional Advil for 36 years and she brushed me off. I was SEEING HER BEFORE I EVER TOOK PAIN MEDS. She knew the lengths I went to with naturalistic methods.

I reminded her of all of this:

 

“Of course the pain meds work, you want them to work. You’re reliant on them. It’s all psychosomatic. If you could just control your anxiety and eat properly, eat vegetarian, you wouldn’t have any at all. You choose to be this way.”

“Doctor, I’m vegetarian. I use yoga. I do everything right and I still had emergency room level pain. No meds equals level 10 pain.”

“Of course! Because you don’t know any better! You’re dependent on those medications because you don’t know any better!”

“I’m dependent because I want to live and not be suicidal. I’m dependent, not addicted. As a doctor you know the difference. I’m not on anything addictive. But I depend on my medications to work, and because they do, I rely on them and depend on them to keep me healthy and productive.”

“Why are you so argumentative today, Jessica?”

“My session is over. Do you have my scripts?”

“Yes, don’t forget them. You clearly need them. What are they again?”

 

Nope, she’s just turned into some strange, rude, sometimes mean, forgetful, immovable asshole.

I don’t really have many expectations.

I certainly don’t expect that if you advertise yourself as a talk therapist that you should then tell your patients they ought to find a therapist in addition to meeting with her because she prefers not to deal with it. Right. Separate my services so that I have to pay more on a very low income with a tight budget.

I just… I can’t. I’ve lost all of my even. Gone. Withered away.

It’s funny how in the current culture, expecting kindness and honesty are”high expectations.” It’s funny how when you tell someone exactly what it is you need, want, or expect, their response is one of confusion. Now… this following conversation occurred a year ago with The Mister. I remember this conversation well and I’ll simply refer to it for cake-making purposes this year so that the conversation need not occur again regarding cake.

 

“Honey, would you like chocolate or vanilla cake for your birthday?”

“What do you mean? Why go to the trouble?”

“Because I enjoy it and it’s less expensive. Plus the kids want to help. So would you like chocolate or vanilla cake? Or another flavor?

“What? What do you want from me?”

“WHAT what? I want you to tell me what flavor birthday cake you want. I’d like you to do it kindly. That’s all I expect.”

“Oh. Can you make chocolate chip cookie cake? It’s kind of… my favorite.”

“Sure thing. That’s all I needed to know. I love you.”

“Love you too. I have things to go do.”

 

I don’t know if I forgot how to use the English language with my cognitive impairments thanks to ICD-10 Fibromyalgia M79.9 😉 but this isn’t uncommon throughout weekly interactions. It can’t all be me. It’s like people forgot how to interpret language, and their receptive language skills are just dead. I don’t think my expressive language skills are totally shot yet. I know I can be wordy but most of the time it’s in an effort to be sure I’m understood. I try to make sure that my expectations are clear. I guess that makes me a control freak.

I know that not all of my expectations will be met. I don’t expect all of my expectations to be met. They’re just expectations. I’m fine as long as I know that best efforts were made. Best efforts and truthfulness are huge. So is responding to me when I say something. Acknowledge me when I speak. Acknowledge my presence. When I call you, when I say your name, don’t call back “WHAT?” in annoyance or stare into space. Come to me. Look at me. Treat me like a person. That’s a reasonable expectation.

That all said, there are some jobs that you would think have established expectations built in and there are standards for the field that would be observed. A code, even. I know that many psychiatrists are “only prescribers” and don’t offer talk therapy but many, many, many do and so when they advertise their practice that way, then there are reasonable expectations of what that job entails.

Hence:

 

Reasonable Expectations To Have Of Your Psychiatrist:

  1. Listen to your patients more than you speak because that’s your fucking job
  2. Remember that the appointments are about your patients and their lives, because that’s your fucking job
  3. Appointments are not time for the Dr. Whackadoodle-Pants Show where you show your patients how much better your life is; It’s appropriate to sometimes draw a vague comparison to your own life but your patients don’t need or want to know about your personal life because sharing every aspect of your personal life every chance you get is NOT your fucking job
  4. Offer advice, tools for coping, and emotional support because that’s your fucking job
  5. Discuss various additional options for self-regulation with Depression, Anxiety, Mood Disorder, and other psychiatric issues because that’s your fucking job
  6. Discuss pros and cons of medications because that’s your fucking job
  7. When your patient tells you that a particular medication gave her A, B, C negative and/or allergic reactions you listen, take it seriously, and you report it because that’s your fucking job
  8. When you make one or more serious diagnoses of your patient, you TELL THEM ALL OF THE DIAGNOSES like a fucking boss because A. That’s what they’re there for and B. It’s your fucking job
  9. When you feel superior to your patients, as if your patients are whiny complainers, and you can’t get your shit together enough to have the correct files in front of you, close your office and quit your fucking job

 

Really.

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There’s such a great not-knowing because there’s the privilege of not *needing* to know until one *must* know in the so-called abled world. I hate that word, abled, as if having disabilities means someone isn’t abled or, in the common vernacular, capable of performing tasks of worth for the self, family, or society. There’s also an unawareness about intersectionality regarding multiple disabilities, as if it’s not possible to have more than one disability. But wait, there’s more… intersectionality with disability also includes gender, culture, ethnicity, abuse history, poverty, and other marginalized groups overlapping with each other.

It’s a privilege, but it’s also insensitive and inconsiderate. I’ve written about disablism before, ie. the attitude people have against disabled people and the discrimination. The article I’m sharing talks about how so much of it isn’t blatant and in your face cruel, and may seem like it’s not a big deal to those who don’t have (or don’t accept they have) disabilities. Very often, the person that’s engaging in disablism (ableist behavior) may even think that they’re showing compassion and being kind and not realizing that they’re being condescending, rude, or even harmful to the individual and disabled community.

I can give an example or two.

I drop my cane often, sometimes in public. Yes, I keep it with me always even if I don’t need it at that second because at some point in the near future I’ll likely need it. I can’t really leave behind what’s usually my third leg. 😉 Anyway, I drop that thing frequently and there are times when I do it in public, strangers will pick it up for me.

That seems so kind and considerate, right? In that immediate moment their instinct was to pick up the cane so I wouldn’t topple over into the egg display. The problem is that they didn’t ask first. It’s a little presumptive that I can’t pick it myself, even if I may actually be in so much pain I can’t pick it up myself. Most people who haven’t been around others who use canes (or haven’t used canes themselves) don’t know where to touch the cane when picking it up, and instead pick it up by the handle… and I don’t know if they wash their hands after using the bathroom or sneezing or coughing. I simply need someone to ask,

“Hi, do you need help reaching that?”

 

People do that so-sorry head tilt with a pout and sorrowful expression when they hear that one of my daughters is autistic.

“Oh my god, how do you live with pain like that? I couldn’t live that way. Plus three girls? And one with Autism? I really don’t know how you can handle all of that. I couldn’t do it. But I ADMIRE YOU. You’re SUCH AN INSPIRATION.”

Not enough of an inspiration that you’d imagine yourself living with a disability or living with a child that’s disabled, apparently.

People send me tons and tons and tons and tons of advice from anti-modern medicine and anti-doctors and anti-education and anti-science propaganda web sites that they think will “cure” my pain and depression as well as my daughter’s Autism, and my other daughter’s ADHD. If I take the time to respond and actually refute the trash with proof and science, the response is usually,

“Yeah, but what if? So and so said that they used it and after six months they felt better, and their cousin’s friend was actually cured!”

Mmm hmm. What if. What if the snake oil salesmen are right, and all of those hundreds and all of those thousands of dollars of tainted “essential” oils I’m supposed to use for the rest of my life are a great “cure.” Along with the food supplemental companies that are so much better than actually eating real food, that really want you to join and sell their food-like products that are packed fully of allergens. Not to mention the insistence on avoiding real medicine for special filtered waters you can only buy from wherever. All of this instead of eating real good whole foods and exercise that’s tolerable with good medical care. Everyone else has the cures. Everyone else knows The Cause and who to blame.

My favorite is,

“Exercise helps. That Lyrica commercial says a body in motion stays in motion. How active are you, like REALLY? You ought to join a gym and try Lyrica.”

 

Yeah-no. All my nope. That commercial is irresponsible, and I could throw a tantrum about it right now, but that’s not the point of this particular post. It’s the disablism in the meaning well, the knowing better, the feeling so sorry, forgetting to ask permission, and so much more.

And here, now, is the post that inspired me from The Caffeinated Autistic. Much more eloquent than I managed to be.

Blogging Against Disablism: Sometimes it’s subtle…. – The Caffeinated Autistic

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I’m going to start right out of the gate admitting that I realize there are probably hundreds of blogs addressing displeasure, calamities, and reasons for and against DST.

I’m not those blogs. 🙂

I know it’s a struggle for households that don’t have children, and households that don’t have children or adults with any sort of disabilities or neuro-diversities.

We’re not those households. 🙂

I could talk about the fact that during the week after Daylight Savings Time kicks back in and we’re forced to move our clocks ahead an hour on that predetermined agreed upon day, are the most car accidents and fatalities. People are late to work that entire week. It takes a week or two for most people to get their sleep cycles adjusted because it may seem like a simple one hour change, but we’re actually shifting our entire day to accommodate this change. We’re losing more than an hour of sleep.

I could do more than mention them and go into lots of detail, but I won’t. I’m too tired.

In a household where there’s someone with physical disabilities (me) and someone with neurological diversity (two teens) there’s far more involved. As small children and through elementary school we would try to prepare by adjusting bedtimes two weeks prior to DST. We’d try to adjust meals as well. Slowly, but surely we’d try to adjust the routine and schedule.

It didn’t matter. We end up dealing with a minimum of two weeks of tragic drama, and with Sweet Girl it’s gone as long as six weeks. With Dear Girl she usually adjusts within the two weeks, but it’s a tough two weeks. Youngest, Darling Girl goes with the punches.

This year, it’s only been five days in and I’m wrecked. My five hour work day should feel like it’s over earlier in the day, but it feels longer, and so I hit my wall earlier than usual. I’m up earlier than usual this week, that’s what my body is saying. I get home and if I don’t prepare supper early to heat up later, I know I won’t be able to from the pain or chronic fatigue. Already this week I’ve had days where I had to go straight upstairs to have a good lay-down.

Sweet Girl’s already-difficult time due to needing a break from school (our town skipped February vacation and they have to wait for April this year) has just been exacerbated. Mornings are already difficult, so ultra-creative motivations and soothings are in order. I just feel terrible because some days I have to simply get Completely Parental and use my I’m Serious Because I’m Your Mom Voice. 😦  Prior to coffee sometimes. Sometimes I’m so tired and grumpy right along with her that I actually forget to make my coffee.

Dear Girl informed me on Monday or Tuesday that I need to get to The Guy Responsible For DST prior to having my early-morning coffee while still in my prior-to-early-morning-coffee-mood and Have A Talk with him. I wouldn’t be making any friends. But he WOULD stop fucking around with time changes.

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