Archive for the ‘Fibromyalgia Men’ Category


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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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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The Stalking Tiger, such a pretty, seductive, sneaky girl when she’s trying to convince you that her presence is really not a big deal.

I thought I had my eye on her well enough. I thought she was being soothed and kept in her cage.

It turns out her cage wasn’t locked securely. The door has been open and I didn’t even realize it.

It’s a dance we do. It’s a dance I’ve done my entire life. I’m used to hearing the purr grumbling in the throat of The Tiger. Even with treatment, I don’t know if I can say that I’d know what I’d do if I didn’t have the breath of the tiger behind me. When she’s laying at my feet or at the foot of my bed, I can fool myself into thinking that it’s manageable. I can fool myself into thinking that she’s not stalking me, but protecting me, and that she’s keeping her distance.

But I keep feeling her bump into me, and now her teeth have scraped my calves. She’s drawn blood, and there’s simply no denying that. The rivulets of anxiety drip upward and sideways, making their path to my brain. Odd… odd how I’m associating anxiety with blood. Or maybe not so odd considering the state of the world right now, and the current headlines over the past month. Maybe it’s not so odd with the anniversaries and end of the year anxieties in work and the usual holiday worries.

I’ve noticed the depression getting increasingly worse over the last couple of weeks, as the symptoms I feel become too much to ignore. I’ve been forcing myself to take some stock in my language, my outlook, and how I’m feeling in general. I’ve been feeling as if I’m floating and watching myself act and react, or not act and react enough.

I’ve been feeling as if I’m separated from the Me part of me. It’s somewhat surreal. It’s almost as if I’m a different me taking care of Me, but I’m not doing a really good job. It’s likely been affecting me and my performance in, well, life for longer than the past month and it’s only just now caught me bleeding.

I’m having trouble concentrating in conversations.

I’m having trouble socializing.

I’m dreading most events.

I cry at the news. I cry at blogs. I cry at happy stuff.

When I should cry, I can’t even shed a single tear.

Laughing feels forced.

I dread leaving the house every day. Of course this hampers errands and shopping for groceries.

I’m having trouble remembering details, even when I write them down.

I’m losing focus.

It’s harder for me to care about getting ready for work. I do it… but the drive isn’t there. Physical pain, of course, is a huge driving force regarding that.

My emotions are leaning towards sad, extremely sad, anxious, angry, frustrated, annoyed, flat.

Dread.

A perpetual state of anxiety.

I can fake happy. OK, I can try to fake happy and the truth is, I’m not really sure that in the stage of depression and anxiety I’m in if I’m really pulling it off.

I can almost fake being able to tolerate my physical pain levels. I can’t tell if I’m covering up any of the feelings that would make other people uncomfortable. I hope and pray people only approach me when the pain isn’t so high that I can concentrate on what they’re saying and it’s not making me feel like throwing up.

I don’t know if I’m making enough of any of it work to succeed at Life right now. I can’t tell.

I want to withdraw into myself but there’s too much going on, and that’s making things worse.

And oh, the CFS. I find that I don’t want to fight it. It gets me through excruciating physical pain and yes, it gets me through emotional pain and the non-ness that I feel. It’s not intentional going through CFS, or to be forced some days to give in to it. Accepting it is a different matter. The CFS can drain the Jessica part of me although it can give some of the Jessica part of me back when I can give in. Refusing to give in to the CFS makes the Depression worse, sapping even more of the Jessica part of me. The pain worsens the depression and the CFS; the pain steals more of the Jessica part of me and I’m just less.

I’m Non-Jessica.

It’s like… an in between of existence. There’s a less-ness in how I affect others lives, and a less-ness, a non-ness in what might happen if I just disappeared. But being Non-Jessica can be a skill, too, helping me to be successful in that one thing… hiding, making the Jessica part of me less noticeable, so that she won’t be missed and no one will be angry if she can’t participate.

Can Non-Jessica still be a good person? Is my Non-Jessica-ness even still a person at all? Because what I get is a feeling of non-presence mixed with indeterminate value joined together with the un-, in-, non-. I suppose I know I’m here, but I’m still feeling unseen. Or maybe needing to be unseen. Needing to hide in plain sight so that Non-Jessica can slip away unnoticed. All of that is non-ness. Non- whatever. Non. Non-ness.

I’m not necessarily losing my bits of me. Those bits, those chunks that the Stalking Tiger likes to bite away in nibbles, then chunks, the times when even Non-Jessica is nowhere to be seen and Eaten Whole Jessica has taken her place, because when the Tiger nibbles, when she thinks I won’t notice because she’s feeding off other pain, she’s really stowing some of it away in little Tupperware boxes with little lids to be dusted off when it’s safe to take them out again, without even a dash of cinnamon sugar.

I feel as if I need time and space, which is difficult at this time of year. Everyone and everything else needs me. The problem is that the Jessica part of me, floating above Non-Jessica and watching the movie, trying to direct Non-Jessica, is forced to take control for spans of time to be functional enough to get through each day.

I need a time out, and a better lock for that cage. And also, maybe a better shrink.

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I’ve been excited about this news: On October 1, 2015, fibromyalgia was finally officially recognized as an official diagnosis in the new ICD-10 list of codes being adopted across the U.S. This is the beginning of the medical community being forced to take a look at what Fibromyalgia sufferers have long known: that what we endure is a real medical condition and is biologically based deserving of its own unique, individual, singular diagnostic code.

We are now, in the new system, able to use the diagnostic code: “Fibromyalgia (M79.7).”

Until now the ICD-9 list of diagnostic codes has NOT listed a specific code for Fibromyalgia. Instead doctors have been using “Myalgia and myositis, unspecified (729.1),” which includes any disorder causing muscle pain or inflammation. As we sufferers have long known, muscle pain and inflammation are a big part of Fibromyalgia but are only part of it, and there is so much more to this disease. It deserves much more than a generic and unspecific terminology. It’s sort of like PDD and PDD-NOS (Pervasive Development Disorder/Not Otherwise Specified), getting to call itself Autism officially diagnostically.

Now the ICD-10 is out; freshened up with a new coat of paint with modern colors, track lighting, and levered door handles. That formerly dimly lit room now opens into a spacious room with plenty of windows, soothing shades of purple on the walls, providing more opportunities for funding and services from more sources.

There’s hope that we won’t be viewed as doctor shoppers, lazy do-nothings on welfare, and feckless drug addicts desperate for our next fix.

We can point to this code when we go to emergency rooms that haven’t caught on yet and look at us with knowing looks when they hear the word Fibromyalgia, even when we tell them that we want to find out why our appendix is hurting and if it’s infected and we’re not interested in pain meds. That in fact we stopped taking the pain meds in order to figure out where a particular new pain was coming from so that we could describe it and see if it was causing additional symptoms. That we would like a CT Scan, X-Ray, MRI, blood tests, urine tests, stool tests, anything at all to figure out if we’re going to have a burst appendix or gallbladder removal or if it really is, in fact, the ridiculousness that we live with daily thanks to Fibromyalgia.

There will be changes in the insurance industry with “Fibromyalgia M79.7” as a diagnostic reason for particular tests and medications to be ordered.

We can inform friends and family when they ask what Fibromyalgia is and they’re interested in looking it up.

It’s vindication.

You can’t see me smiling right now, but I am.

What’s ironic to me is that the Federal Government was ahead of the medical community on calling this one. Fibromyalgia has been considered a Federally accepted disability for Social Security Disability claims since 2012. Why did it take over three years for the health care industry to catch up?

 

Source: The Health Care Industry Finally Recognizes Fibromyalgia | National Pain Report

 

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I stumbled across this article on a new-to-me blog that I’m now following. It has some great tips that I never considered when thinking about going to the emergency room as someone who has chronic pain and related issues. This blog entry is talking about CRPS, which is Complex Regional Pain Syndrome. It’s a chronic pain disorder that is separate from Fibromyalgia but can be a co-diagnosis with Fibromyalgia. Each disorder can also be misdiagnosed for the other. She goes into more detail with each bullet point, and you should click the link to see the reasoning why. I’ve begun using these suggestions at work and although it’s been a couple of years since I’ve broken down and gone to the ER, I’m going to be taking this advice.

Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain. |.

 

  1. Make sure that you have a regular physician who treats your chronic pain.
  2. Show that you have tried to contact your regular doctor before you go to the ER … only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.
  3. Bring a letter from your doctor.
  4. Bring a list of medications.
  5. Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it.
  6. If you have a CRPS card, hand it to them and ask for it to be put in your file.
  7. Ask for a nurse advocate or make sure someone is with you.
  8. If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place.
  9. …keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me

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Mini vent: There’s a support group I belong to, and the vent I need to make isn’t very supportive. :p  Frequently people in this forum complain about the lack of government funding towards Fibromyalgia research. There are frequently petitions that are essentially and literally only “Fibromyalgia Awareness should be important! Get the word out!” and then 8,264 people sign that one while 2,937 more sign one that says, “Make the Government Aware of Fibromyalgia! Make the Government Support Fibromyalgia!” and every single one of them are angry.

The most recent post that tipped my kitten was:

“THE GOVT CUT THE FUNDING FOR YOUR DISEASE TO $0. GET MAD.”

Well… what I WANT to say is:

Don’t rely on the government. If you want funding to go to the right places, to the independent scientists that are invested in the research for Fibromyalgia or Autism or Crohn’s Disease or Alzheimer’s Disease or anything at all that you have an interest in then you do the research to find out who can be trusted, who is legitimate and taken seriously in the scientific community among their peers, and you donate to them yourself. Don’t invite the government into your home unless you have no other choice.

Fibromyalgia awareness and acceptance isn’t something you petition for. It’s something that you talk about. You educate people about. You create noise about it. You advocate regarding Fibromyalgia, and you self-advocate. You share information and research from peer-reviewed scientists and get your doctors involved in the discussion.

The government IS AWARE of Fibromyalgia. They’re not ignoring it. In fact, there was this huge announcement back in 2012 about Fibromyalgia being added to the list of recognized disabilities eligible for Social Security Supplemental Income (SSI) and Social Security Disability Income (SSDI). That’s a big fat statement right there that the government recognizes and accepts Fibromyalgia as legitimate.

Finally, if the government cut funding to NASA, who is responsible for things like better mattresses, coats, boots, and many other social advances that make us happy, the government sure as hell isn’t going to fund Fibromyalgia research.

I’m not going to get mad. It’s not that I don’t want the funding. I think it would be fabulous. We need it. We just need more discussion and education and advocacy out there and we need to do more than create silly petitions that only rile people up and don’t accomplish anything real.

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This came to my attention on Frday of last week, and I’ve been trying to write something that isn’t using profanities every other word. I’ve had about 60 drafts. [There is a new edit at the bottom of the post]

There’s a YouTube video called Autism Mom FURIOUS is over Steve Harvey’s comments – 3.26.15 – YouTube that brings attention to something despicable, something that she has every reason to be furious over. Something that I’m furious and sickened over.

Steve Harvey used his radio show as a comedy platform (as Sister Odell) to make fun of disabled adults attending Church.

I’m not being overly sensitive or too politically correct. If you were to tell me that, you’re defending his actions and diminishing the lives of disabled individuals everywhere.

I’m not infringing on anyone’s right to free speech to call out a comedian’s, or anyone else’s, behavior and speech. This may be cliche at this point, but if he has the freedom of speech to behave badly and speak in a degrading way about disabled people and laugh like a fool over his own (lack of) cleverness, then he’d better be damned sure to be ready for others to use THEIR right to free speech to call him out.

His words were like acid, caustic and issuing a damaging blow to the disability movement. It tells people in cultures where shaming and being embarrassed about their disabilities and their disabled family members that it’s appropriate and even “funny.”

It tells people that those who can’t always speak against this very same sickening attitude that the world is not even attempting to change to be more sensitive, let alone accommodating, to them.

It tells them that this hatred, being thinly veiled with so-called humor, not only exists in their own homes with family members, but likely at work with employers and co-workers, with neighbors… and out in the world in the media and with other people in the public eye that are looked up to for heaven knows why.

It tells disabled children in school that the bullies who claim they’re just joking, using humor as their mask, will be allowed to get away with it because they’re not really doing any harm. And no one will do anything until someone commits suicide; then everyone blames the child’s parents for not realizing how disturbed s/he was in his disability and why didn’t the parents get him/her the right help or realize how mentally ill they were before s/he committed suicide, when the real issue is that demeaning disabled people and making them Less Than Human is damaging.

Disabilities do not make disabled individuals Less Than Human. They… we.. are fully Human. We’re simply different. And in the words of Temple Grandin, disability (although originally from the point of view of Autism) merely means Different, Not Less.

It’s not unrealistic to expect that some things should be completely off limits as jokes. It’s more than “in poor taste.” We can take poor taste. What Steve Harvey did is cruel, bullying, and calling it comedy somehow gives it free license to say truly hurtful things and it shows exactly how he feels when he sees someone with Autism or similar disabilities that have nonverbal learning disorders and additional conditions.

Calling it comedy means that some people will repeat the so-called jokes because it’s “funny” and of course funny means that people won’t be able to conceive of the idea that it could be hurtful. They’ll repeat it because they’ll have reinforcement that attitudes such as Steve Harvey’s about disabilities and disabled individuals are acceptable and correct. You know, because we’re the ones who are humorless and touchy and overly sensitive.

Those attitudes are not acceptable. Not. Acceptable. But I suppose with Steve Harvey being who he is, I shouldn’t be surprised.

I’m disgusted and sickened. This is the sort of attitude that I feel I’m swimming upstream through chunky peanut butter to end. I’m allergic to peanuts.

No, Mr. Harvey, there’s no way you’re getting out of this with anything less than some very public reconciling to do as well as some reconciliation of the divine sort.

Share. Please. Share that link. Listen to what Steve Harvey thinks about disabled people from his talk show. Then boycott him. If you can’t do that, then write to his producers and tell them exactly what you think about his behavior. Let them know that if you were a fan, you’re not any longer. Let them know that if you hadn’t watched or listened before, there’s no chance in hell now.

More importantly: If you ever have behaved or spoken in a way that’s degrading to any individuals that have any disabilities at all, please stop. Think about the damage you’ve done and are doing if you don’t stop. You don’t know who has an invisible disability that hasn’t come out to you about it, so you don’t know who you’re harming. Be an ally instead of the villain.

#BeAnAllyNotAVillain #FlashBlogBoycottSteveHarvey #BoycottSteveHarvey

[EDIT: I really didn’t want to add what it was he said because I think if you watch that video above, she illustrates what’s wrong with what he said. But I should have included that he joke was made during his morning talk show on March 26th as his character “Sister Odell.” He has since apologized except that his apology wasn’t really an apology. It was a “y’all can’t take a joke” jab.

It started out on Facebook as,

“To everyone, please accept my sincere apologies. It was not my intent to hurt anyone.”

He should have stopped there. That would have been perfect.

He continued with:

“Sister Odell is a made up character, she is not real and my intent was not directed at any other real person. And most certainly was not directed at anyone you know. Again my apologies. The problem with comedy is ALL subjects can offend someone. Please forgive me if you were. DON’T TRIP HE AIN’T THRU WITH ME YET.”

Apology? Do you see what he did there? Exactly what I said he’d do. He excused his behavior. He blamed those offended in the disability community, for being offended that he said offensive things he should have never said. Under the claim that it wasn’t really him but the character he was playing.

When you apologize to anyone you’ve offended, you simply apologize and you don’t qualify the behavior. You don’t excuse the behavior. You don’t turn it around and blame the massive group of people you offended for being rightly offended.

This was a non-apology.

How does one exactly blame the fictitious character that one writes and plays? It’s not MY fault, it’s Sister Odell’s fault for making fun of someone that doesn’t actually exist.

No, it doesn’t work that way. It can’t.

Those “jokes” only barely thinly mask a very real opinion. He wasn’t being sarcastic in the jokes, using them to describe a behavior about disability bigots that he was disgusted with. He was the one making fun of disabled individuals. It doesn’t matter if it wasn’t directed at a specific individual… that makes it even worse because now we also know what his stereotype of a disabled person looks like. They’re all intellectually disabled, unable to speak, unable to control themselves and their bodies, unable to control the sounds coming out of their mouths, looking foolish.

This is what such “comedy” perpetuates. That a thin mask of hate of disabled people and their disabilities, and hatred their audacity to be disabled in public, can be called comedy and therefore not be considered hate speech or discrimination. No, if it’s comedy, it couldn’t possibly be a mask of hate and discrimination.

What saddens me is that there are people commenting on his pages that they are or know someone close to them (like a son or daughter) who is disabled, and not only are they not bothered but they found it funny too. They want him to continue, and they support him and believed an apology was not necessary. That anyone offended had no reason to be offended and basically, we’re all party poopers without a sense of humor.

That’s what couching hatred of disabled people in humor perpetuates. Not acceptance, not a desire to learn more, not even tolerance.]

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