Archive for the ‘introspective’ Category


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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I forget where I got it, other than Google

Candlelight Vigil

In the aftermath of the Orlando massacre, a three hour nightmare, I’ve realized that the moment it occurred and was made public was a moment that changed America forever.

I hope that none of us loses sight of what’s really important in this tragedy. These people matter. The 49 who were massacred. They’re important.

Edward Sotomayor Jr., 34 | Stanley Almodovar III, 23 | Luis Omar Ocasio-Capo, 20 | Juan Ramon Guerrero, 22 | Eric Ivan Ortiz-Rivera, 36 | Peter O. Gonzalez-Cruz, 22 | Luis S. Vielma, 22 |Kimberly Morris, 37 |Eddie Jamoldroy Justice, 30 | Darryl Roman Burt II, 29 | Deonka Deidra Drayton, 32 |Alejandro Barrios Martinez, 21 | Anthony Luis Laureano Disla, 25 | Jean Carlos Mendez Perez, 35 | Franky Jimmy Dejesus Velazquez, 50 | Martin Benitez Torres, 33 | Luis Daniel Wilson-Leon, 37 | Mercedez Marisol Flores, 26 | Amanda Alvear, 25 | Xavier Emmanuel Serrano Rosado, 35 | Gilberto Ramon Silva Menendez, 25 | Simon Adrian Carrillo Fernandez, 31 | Oscar A Aracena-Montero, 26 | Enrique L. Rios, Jr., 25 | Miguel Angel Honorato, 30 | Javier Jorge-Reyes, 40 | Joel Rayon Paniagua, 32 | Jason Benjamin Josaphat, 19 | Cory James Connell, 21 | Juan P. Rivera Velazquez, 37 | Luis Daniel Conde, 39 | Shane Evan Tomlinson, 33 | Juan Chavez Martinez, 25 | Jerald Arthur Wright, 31 | Leroy Valentin Fernandez, 25 |Tevin Eugene Crosby, 25 | Jonathan Antonio Camuy Vega, 24 | Jean Carlos Nieves Rodriguez, 27 | Rodolfo Ayala-Ayala, 33 | Brenda Lee Marquez McCool, 49 | Yilmary Rodriguez Solivan, 24 | Christopher Andrew Leinonen, 32 | Angel L. Candelario-Padro, 28 | Frank Hernandez Escalante, 27 | Paul Terrell Henry, 41 |Antonio Davon Brown, 29 | Christopher Joseph Sanfeliz, 24 | Akyra Monet Murray, 18 | Geraldo A. Ortiz-Jimenez, 25

The 53+ people who were injured, maimed, and hurt matter and are important. Their families and friends are important. The first responders, the police, and the nurses and doctors at the hospital who interacted with them, tried to save them, watched them die, are important. The people outside the club who watched it happen are important. The 9-1-1 operators who answered those calls are important. The off duty officer who was outside and realized something was happening and was the first to engage is important.

As a Christian, as a Catholic, I believe that above all else, we need to remind each other to make it a priority to choose love, compassion, empathy, generosity, loyalty, humanity, kindness, open mindedness, duty to our family and communities. This is my call to Faith. This is my call to Action. The only way we can make sense of things: remembering those who have died. Praying. Giving blood. Giving hugs. Communicating with Equality Florida (click here). Letting our LGBTQI+ family and friends and coworkers know that we support them, love them, need them… ESPECIALLY when we’re Christian… ESPECIALLY when we’re Catholic.

We all have such a capacity for love that most of us are still learning to tap into the potential of it. Well, it’s time to put down the chisel and grab the wrecking ball. We need to break open the dam and forget about the flood gates; we need to forget about holding it all in.

We’re a nation that is filled with diversity, and therefore intersectionality. We all experience the same emotions and have the same needs.

Everyone has an opinion, and they’re clamoring for their voices to be heard about what they believe is the most important thing. I have some opinions. I’m not so sure they’re lining up with what other people are talking about. I don’t really care. It’s my blog. I can talk about what I believe is important, especially based on what I’m experiencing in my home with my children.

I’m trying to imagine how hard it must be for the people who were actually involved. But I imagine the people I love who are in the LGBTQI+ community. I imagine my daughter’s friends that in that community, and how she feels when they tell her about their fears and grief. I imagine them going on vacation to Orlando, and being in the wrong place at the wrong time. I imagine it happening here, in a place that’s supposed to be a safe zone for them when “out there, somewhere outside” isn’t so safe. Fear and grief clutch at my heart, and again, I try to imagine that feeling in someone with more ties to the community.  Those are the people who deserve the empathy and connection and consideration. Those are the people who need protection, love, generosity, caring, and a sense of safety equal to that of what anyone else feels.

I have a difficult time with the people who choose to identify with the murderers, to the point that they become apologists and empathize with them. In this instance, there are vile people out there cheering him on believing he should have been hailed as a hero.

I don’t want to empathize with the shooters or those assholes who do.

Most people in the world agree to live by the codes, laws, mores, and social systems established in the societies they live in. Most people who don’t enjoy the society and have the will to change it go about changing the system legally and without violence. Most people live in a world where they care about their community as well as their core family.

We need to accept that we belong to more than our simple family units; we belong to our towns and cities, our states, our nation and yes, we belong to the Global Community. We all need each other. We have more similarities than we do differences. No single one of us deserves more than another, or is worth more than another. We form closer bonds with our parents, spouses, children, siblings, and friends, and that makes them important… but our value as human beings is all the same. Our needs are all the same. We’re all equal in God’s eyes, and so we should all be equal in each other’s eyes. We must be. God loves us all. Maybe he loves all of us enough for himself, but I believe that we were all put here to love and be loved. To respect and be respected. To learn. To build relationships. To see God in each other. To see ourselves reflected in others. To appreciate where we are, and the wonders of the Earth and the Universe and each other. To learn as much as we can before we look forward to the big pearly gates. Doing all of this while still honoring a relationship with Jesus, with God, while accepting everyone BECAUSE OF their differences can only fill our lives with more love.

I’m certainly not perfect. I have a hard time with this. I try my best to at least “not hate.” I may not love murderers or Donald Trump but as my daughters point out, “It’s not Christian to hate them. Jesus would say don’t hate anyone.”

So trust me, it’ll be hard for me to follow certain aspects of my own Call to Faith and Call to Action, but I beg you to try with me. Please. Let’s pay it forward with a kind act each day. It shouldn’t be a token act, but it doesn’t have to be a grande gesture all the time either. It SHOULD come from the heart and be genuine.

I’ve written far more than I intended to write. I had hoped to be much more succinct. My brain is just so full up. So sad. I don’t know what to do with it all.

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It’s too much, lately. Too complicated. There are too many terrible, vile things happening in the world to people by people. I’m feeling overwhelmed. I have so many thoughts and feelings about everything that’s going on that I’m having trouble sorting them out. Some of them are tied together, but are also separate issues and so I need to figure out how to simplify the way I need to write about the topics.

In the meantime, if there’s any topic that YOU would like me to discuss please let me know. I’d be happy to give it a shot. It would be something new for me. Otherwise my next post will most likely be something akin to generic store brand microwave pizza that tastes like cardboard.

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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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No, I’m not going to write about that miserable son of a bitch, Lucifer (in the flesh 👹, whom God has apparently forsaken if anyone were to have listened to early campaign claims 😇) having dropped out of the campaign for the Presidential nomination.

I’m not going to write about how I’m wondering what his political wife is doing right this instant, since she had hoped to be President herself and then dropped out of the race, and then suddenly she had the chance to be VP and now suddenly that was snatched away too. But I’ll bet there are flaring nostrils and wild, staring eyes involved. Red rimmed and glowing.  👿😲😤😠👾

Nope, I’m not going to write about that at all.

I’m not going to write about the apoplectic conniptions in the GOP 🐮 that I’m sure are running like The Wave through a full crowd at Fenway Park during an awesome game in a winning season, due to the come-to-Jesus realization that Donald Trump “appears to be” the presumptive nominee.

I’m not even going to write about how telling that particular little phrase is. Presumptive nominee. It makes me half think that Mitt Romney is going to jump out behind a curtain and shout, “SURPRISE!” with spirit fingers waving gleefully as a weird, creepy reality show mid-season finale cliffhanger that announces he’s the Party Nominee for the general election, with Paul Ryan’s oily ooziness peeking out warily, like Voldemort before he had his full powers.🎪

By the way, I tried to do a Face Swap with Voldemort and Paul Ryan and I swear on a stack of Harry Potter books, THERE WAS NO CHANGE!!! Either that or it didn’t work but I don’t accept that. Someone else try it, ok?🎭

Left: Bearded Paul Ryan; Center FACES MERGED WITHOUT CHANGE!; Right: Lord of All Evil, He Who Shall Not Be Na…Screw it, it’s Voldemort

 

And, um, apparently that Kasich joker 🃏 “suspended” his campaign to be the Presidential nominee just a bit ago.  But I’m not going to write about that either.

I guess there’s nothing to write about right now. 📰📝Sure was a boring day in politics.  🙃

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Good morning, Loves! I know it’s belated, but I hope that you had a wonderful Easter weekend. I hope that you have an equally wonderful Easter week.

It was wonderful seeing most of our immediate family. We missed a couple of my husband’s sisters, since they took their families to Florida, but we’ll see them this coming weekend for my eldest girl’s Confirmation.

It’s been hard for me to get to Church lately due to the pain, but it doesn’t reduce my spirituality or love for Jesus at all. It doesn’t reduce how amazing Easter is for me. It’s my favorite holiday, actually. It’s my favorite not just because it’s in the Spring and usually there isn’t a hint of snow (every now and then, there’s snow on Easter in Connecticut).

It’s my favorite holiday because of all of the typical reasons we usually give, the reasons that sound trite and cliche. This year we have two babies that are a year old running around, and baby that’s a month old. We have a four year old giving my three girls a run for their money. We have teen and tween nieces for my girls to get in trouble with. We have each other.

More than all of those things,  Easter lets us know that there’s… what’s the word… potential? promise? We have potential and promise to make the difference in our lives that we want to make. We can make changes that we need to make. We have get to be the ones to make the decisions if we choose to make them. We have the potential to affect change in others’ lives if we change our behavior and attitudes. Just as Jesus died and came back, every Spring we have the chance to remember what he did for us and grab onto his promise and take advantage of it. We can look at life with a more positive view if we choose, and slow our lives down even for just a few days.

We can reassess our schedules, routines, budgets, friendships, entanglements, careers, diets, etc. We can simplify our lives. We can choose what makes us happy, but is also considerate of and is a positive change for those we live with and have very close relationships with. We can choose which relationships need more attention, and which are toxic and need to be released without anxiety.

Easter is a release in so many ways, as well as a chance to focus, eh? It’s a reminder for us to take care of ourselves, our families, and friends. It’s a reminder to tend our relationship with God. God is in every positive change we make. He’s in every bit of potential, and every single promise. He’s in every lift of attitude and release in simplification. He’s the strength in the chain that holds our relationships to family and friends together.

Take good care of yourselves and Happy Easter. If you don’t celebrate Easter,have a beautiful day and take care.

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Using All The Spoons

Using All The Spoons

I think it was one of my doctors that said,

“There is nothing noble about having to endure severe pain when there are options that will help alleviate the pain. I don’t care if its severe physical pain, or if its severe emotional pain. We put ourselves through too much pain, because we think that it’s some sort of spiritual, strengthening experience and it proves something about us as an individual. I don’t believe that.  Asking for help and pain relief is not a sign of weakness but of pride. Knowing when to ask for help is a strength.”

That’s been rattling inside my head for months, and I believe it’s true.

I’ve seen people online in support groups and in real life say that they endure the pain of Fibromyalgia and Lupus and other chronic pain disorders without asking for any relief from doctors or any support from friends and family because it’s a test from God. If Jesus could die on the cross for our sins then the least they could do is endure their pain without complaint outside of the Fibro support group.

I want to scream at those people that the entire point of Jesus dying on the cross for us was to sacrifice himself for our sins so that there would never have to be another blood sacrifice again to God. No more pain from sin, because he was carrying it. So any pain we’re going through isn’t because of sin, or because God wants us to go through it as some sort of test. God created scientists and doctors for a reason. God created nutritionists and yes, even homeopaths for a reason. To help us improve our health and ease pain. If we try and it doesn’t work, we simply (ha) having found the right combination yet.

So many of us that have chronic pain like Fibromyalgia seem to think that showing signs of pain and asking for help or support is a sign of weakness, and if we show any kind of weakness then others will walk all over us and take advantage of us.

We think that obtaining pain relief and admitting that natural remedies we’re trying don’t work well enough or are no longer working and we need to try something else is a sign of weakness.

We don’t want people to think we’re faking.

We don’t want people thinking we’re exaggerating.

We don’t want people thinking we’re whining.

We don’t want anyone to think we’re trying to suck The System dry and take Your Tax Dollars In Benefits We Don’t Deserve.

We believe that you have a right to judge our pain relatively while at the same time, believing that you have no right to judge.

We believe that we should be able to endure any kind of pain in silence, that we shouldn’t burden other people with our pain.

We believe we’re burdens.

We hope our spouses and loved ones stay by us steadfastly  no matter what, and refuse to see us as burdens and make great effort to understand us even when we’re at our worst moods and least ability.

We believe that our children shouldn’t see our pain and disability and how we handle it…. just like how so many people believe children should never see their parents fight and make up… without realizing that children who witness and learn to deal with disabilities in their families grow up with compassion and an ability to understand disabilities.

We believe we’re burdens even to our doctors ( if we don’t already believe Big Pharmacy is out to get us, poison us, take all our money, and all doctors are in on it). We forget that doctors are our employees who work for us and with us, and we get a say in our treatment. We forget that we have a voice, but that we need to learn to use it.

Our burden shouldn’t ever be someone else’s burden. Yet… when our loved ones don’t ask us how we’re feeling or offer to help us, offer to try to relieve us some how, some way, so many of us are hurt and insulted and complain that our friends and family must not care. We spend so much of our lives hiding our feelings, emotions, pain, and disability that we forget we’re not really letting them in. They don’t really know us because they only know what we’ve shown them until now. If it appears as if we don’t need help or care or support, they’re not going to offer it. If we don’t tell them we need anything, they won’t offer it. If we don’t ask, no one will help.

And if we don’t inform spouses and children that they’re expected to help, they won’t.

Yet we take on their burdens as if they were our own without complaints even if we can’t afford it, and we’ve nearly run out of spoons. Why do we do that? Because we need to prove ourselves. We need to prove that we’re fine and can handle our own burdens, those burdens that no one else is supposed to notice, as well as be helpful and loving to everyone else.

We need to prove that we can overcome. We can bust through disability that’s in our way. We need to defeat disability and illness and disorders and differences. If we can’t we need to pretend and try to pass so as not to make others uncomfortable.

We need to always be Hope and Inspiration. We need to be wanted.

The stigma of pain and disability has been built into  our society for so long that people who endure challenges from disabilities and chronic severe pain perpetuate that stigma by behaving as if we’re ashamed of our pain. That’s what hiding our disabilities and pain really does. When we minimize our experiences and we even go so far as to say,

“Someone else has it worse than I do. I shouldn’t complain.”

We’re saying that we don’t matter enough to be taken care of and to be paid attention to and to be pampered. We don’t matter enough, period.

Do I always want to look for strength in my disabilities? No. Hell no. I have some terribly horrible days where I don’t have any strength of any kind at all mentally, emotionally, or physically. I’m not an inspiration or hope to anyone on those days. I’m not trying to be.

The strength lies in our ability to ask for help.

More of us need to learn to insist on help from our loved ones, and explain what we need when we ask for help and support.

It’s not enough to hope and beg and pray that our loved ones will simply know that we need them, and that they will know what exactly it is we need. The problem is they’re not mind readers. How can they possibly know what we need if we don’t tell them explicitly what we need. Our doctors don’t even know unless we tell them explicitly. And when we tell people we love, as well as our doctors, we need to use a strong voice. We need to use our no nonsense voice in order to get our message across. I’m known for bringing printouts with a list of things I want to talk about. I’m also known for bringing printout of research I’ve done, and I bring links to online research which I know my doctors probably should have done or have already done so that they know there’s a resource that they can go to. When loved ones don’t seem to understand what I’m going through I have learned to show them research. I’m still learning to show my pain rather than hide it. I’m learning that hiding my pain and enduring my pain is not Noble. It does not make me a stronger person. When I need help I am learning to ask for help.

But perhaps even more importantly, when I need help and someone offers their help I am learning to say yes and accept it. It’s hard to do that because of pride, but I have learned that more people than not do have a good heart and even if they don’t understand what I’m enduring if I let them see my pain even if they cannot empathize with me they still want to help. If they can see an actual physical need that’s obvious to them they’re more likely to help. Someone sees simply pain and they don’t know what to do it’s hard to endure it it’s hard to know how to help. People feel helpless when there’s not an obvious task to say here let me help you with this. It’s hard to say what can I do to help you when there’s no clear solution to expect the person they want to help.

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