Posts Tagged ‘Fibromyalgia’


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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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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A very important concept in fighting for Disability Rights is moving away from the Medical Model and towards the Social Model. Acceptance over a cure. Creating Universal Accessibility ideals that are helpful for everyone so that no one may be excluded.

To make it easier to understand I’ll give visuals:

This staircase is lovely, with a ramp built into it as an integral part of the architectural design.

The ramp is built into the architecture as art rather than an afterthought at Robson Square in Vancouver by Arthur Erickson

Robson Square in Vancouver by Arthur Erickson

 

 

 

 

 

 

 

 

 

 

This design below eliminates the staircase altogether in the form a beautiful circular, winding red ramp that everyone uses at the Ed Roberts Campus in Berkeley, California. It’s difficult to see from the photo below, but the doors are also wide and airy, and it’s reported that most visitors find this layout to be very warm and inviting.

Circular Ramp Ed Roberts Campus in Berkeley, Calif; example of Universal Design

 

 

 

 

 

 

 

 

 

The Greendale Villa near Disney World is known to be disability-friendly and uses Universal Design in its architecture. They even use it in their swimming pools.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

 

 

 

 

 

 

 

 

 

 

The examples I gave are easy to understand because you can see them. They’re also easy to understand because they’re inclusive for people that have visible physical disabilities for people that use wheelchairs; parents using strollers or are holding a wobbly toddler by the hand; aging individuals or others who need a walker or a cane; people that have a cast on their leg and use crutches; a postal delivery person carrying or wheeling heavy packages; a student lugging around heavy books or an enormous art project; a caterer making a delicate delivery. The fact of the matter is that stairs are clumsy and difficult to navigate.

When it comes to the disabilities that you can’t see, the Universal Design within the Social Model is still not only an ideal, but a necessity. We’re not demanding that the world change to give disabled individuals “special treatment.” We’re hoping that the world will understand that a level playing field is the goal. We’re hoping that by showing care in being inclusive to all, people might start to figure out that disabled individuals are valuable and have as much to offer and contribute as anyone else does.

I see resistance to these ideas because I think some people believe that acceptance of disabilities means giving up, not trying, not caring, being willing to somehow not be enough of something. Human maybe? Even though disabled people are fully People, fully Human, no matter the disability. But for many people, the Social Model means that those who have disabilities have the audacity be disabled; to not hide the disabilities adequately enough to appear to have no disability at all or, worse, to not have overcome the disability or disabilities. The problem with resisting the Social Model is that the Social Model benefits EVERYONE. That’s how inclusion works. Funny, that.

Imagine these ramps that are inclusive of everyone as communication barriers that have been broken down for people that have mental health disabilities, developmental learning disorders, cognitive function disorders, traumatic brain injuries, intellectual disabilities, impaired vision, impaired hearing… and all of the other invisible disabilities that so many people forget about when it comes to universal designs.

It can be as simple as recognizing that there are multiple ways of communicating. Even a newborn baby can communicate through facial expressions, body language, different types of cries, different vocalizations, eye contact, and even how fast or slow they’re breathing. Someone that is classified as non-speaking and “incapable” of speech is still always capable of communicating.

So if you have someone that’s Autistic or has a speech delay and their parents have been told they’ll “never” speak because they seemingly aren’t verbal since they haven’t  (yet) communicated verbally, what do you think the assumption tends to be?

“My child can’t communicate and never will, and therefore they must be intellectually disabled.”

That sounds so dire, doesn’t it? I would bet my left butt cheek that their child uses body language, facial expressions, other sounds, or possibly even sign language of some sort to attempt to communicate. Pointing, shaking the head, refusal of performing a request and performing a different behavior instead… that’s all communication. It doesn’t mean that the child doesn’t understand what’s being said or asked; it simply means they need another way to communicate.

Hear this well: non-verbal learning disorders and delays don’t mean someone has an intellectual disability, or that they’re incompetent. While neurological disorders and other disabilities such as Autism and Non-verbal Learning Disorder and Sensory Processing Disorder and Cognitive Delays can co-occur, they are mutually exclusive of each other.

This means that you need to assume that your child or any other disabled individual you come across should be presumed to be competent. Presume they can hear you and understand you, and maybe even read. Maybe learn to use cards with images on them. Offer a computer keyboard or a tablet. See if your loved one enjoys drawing, painting, or a craft. Art is also communication. So is music. So is math. Everything someone does or doesn’t do is communication of some sort.

Disability does not make one less. It’s not something to be ashamed of. As someone with disabilities I’m not going to sugarcoat it and say that disabilities are fun and everyone should join me and have them. I’m not going to say that the challenges aren’t incredibly difficult, and that some obstacles don’t really seem impossible to ever overcome. I’m not going to say that it isn’t discouraging at times. Being disabled often sucks, but it doesn’t mean I’m miserable.

And that’s something else.

One big assumption about individuals that have disabilities that needs to disappear forever is that “being disabled means being miserable and life isn’t worth living.” That statement is a myth and it’s offensive. It’s why I found it heartbreaking, tragic, and ridiculous when people decided that Robin Williams’ suicide was understandable when they discovered it was so he wouldn’t have to progress with his disability rather than because it was part of his lifelong depression and, thus, “selfish” of him to commit suicide.

Life is more than worth living when one has one or more disabilities and it’s no one’s place to put value on someone’s life, to measure their worth or right to live or whether someone’s life is a tragedy based on the single fact that they have disabilities or make assumptions on someone’s suffering levels. Life is still worth being part of society, part of family and friends, and having society recognize that individuals who are disabled have just as much to contribute and deserve to earn a living wage, with voices and opinions that are strong.

Part of making society acceptable, part of the Social Model needs to be dispelling myths and incorrect stereotypes about disabilities in general, and disability-specific. For instance, individuals who are autistic are not “suffering with Autism” and nor are they emotionless. They are autistic. Very often, in my personal observations, it seems that autistic individuals are more sensitive to emotions and they most definitely aren’t suffering due to their Autism. The suffering occurs from the treatment of others who may be abusive and less understanding, less accepting, and being in environments that are not disability friendly. For instance, lights that are too bright and music that’s too loud in a store that can already be disconcerting makes the experience nearly impossible for some. It’s an assault on the senses.

There are movie theaters that now offer sensory friendly screenings of movies. They will advertise a specific movie with the times, locations, and accommodations being made: raised lights; reduced level of sound for the movie; allowing wandering during the showing within the theater itself; allowing talking; providing ESL interpreters; allowing carers such as PCA’s to accompany without having to pay additional fees.  Universal acceptance, Social Model.

Assimilating universal designs into our society is an acceptance that everyone of any ability is valuable and worthy of having access to anything and everything. It’s a recognition that everyone’s needs are different. It’s difficult when much of society isn’t just afraid of acknowledging disabilities, but disgusted by them. There is a lot of fear of being seen as different, as Other, because once someone sees you as disabled, you’re also seen as weak and incompetent. There are a lot of people who try to take advantage of that perceived weakness, and there are those who use their physical intimidation to put themselves in a powerful position and misuse it. It’s called bullying.

For me to accept my disabilities relating to Fibromyalgia, depression, anxiety is not giving in or giving up. It’s not accepting a suffocating, negative label. It gives me a name for the obstacles I have to cope with, and a starting point to learn. It means that while I accept my disabilities I can still do my best to help myself feel better. I may have some cognitive issues and massive physical pain that would bring down a horse, but I am not weak nor incompetent. I have strong opinions. I’m a self-advocate and I advocate for my children and others. It’s not easy for me to accept my particular disability because it’s physically and mentally taxing. It’s scary to realize that it’s going to progressively get worse. That just makes me work even harder to take care of myself.

By the same token, by accepting my daughter’s Autism, I’m not throwing her to the wolves and giving up her, drowning her with alphabet soup letters and labels. Discipline doesn’t go out the window. Education doesn’t get tossed in the wind. I’m helping her along with her sisters learn about who they are, what they’re going through, and working out the process with them. We’re learning together how to identify their strengths, talents, interests so that they can learn how to best communicate and what their best learning methods are.

Along the way, we’ve figured out which clothing can trigger negative behaviors. We’ve learned which ingredients in particular foods and drinks to avoid. We’ve learned what weather changes can do to health. We’ve learned how to adjust our thinking, our language, our expectations. We’ve learned that these things change and are fluid and that being flexible as parents and caregivers is simply the best approach.

In doing so, I’m trying to make the world more accessible for her. I’m letting her be who she is without trying to change her. I’m not trying to make her “pass” for neuro-typical or, as those of us who are non-autistic are sometimes called by some people in the Autistic Self-Advocate Movement, Allistic. I’d like her to know that she can change her world. She does need to learn how the “Allistic” world works so that she can navigate it, but whether she ever appears to be like her non-autistic peers isn’t really on our radar.

Would you like to know why? Because I don’t want her to grow up believing that Autism is something she has to overcome or that she has to try to cover up in order to make other people feel more comfortable. She should never have to feel like she has to overcome herself or something that is such a major part of what makes her who she is at her core. Her pride in who she is should be empowering for her.

I see the discomfort people feel when they see my cane, see my pain, and they don’t know what to say. I see it in the faces of people who haven’t seen me in a long time and see me now, or those who just can’t get used to seeing me with the cane. That used to make me feel bad, and as if I had to apologize for it. Then I realized that I shouldn’t have to apologize for having a disability. The discomfort of others regarding my disability or them realizing my daughter has a disability isn’t my problem to work out. It’s up to them to figure out how to accept it and make it part of their reality. Maybe I’m not entirely comfortable with my own disabilities, and that’s okay because I’m learning and it’s a process. I go back and forth between accepting it and not… but as someone who is a do-er I tend to lean towards accepting and moving along so that I can find the new path.

It starts in the classrooms, and I’m hoping that these inclusive classrooms are encouraging children to bring their acceptance and generosity of spirit home to their families. If that happens, their parents bring it to work and it spreads.

We’ve learned that neurology is diverse and that they don’t need, or want, a cure. I’ve heard the words come from Sweet Girl’s mouth herself. She just wants to be accepted for who she is.She embraces her Autism and wants to be accepted. That’s all any of my girls want regardless of their neurology. They are not weak nor incompetent. They are not damaged.

We just need a pool that we can ease into rather than having to jump into all at once.

They Don’t Want an Autism Cure – The Daily Beast.

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I had a 6-month check up with my PCP on Wednesday.  Since my Fibromyalgia diagnosis, this has been something she insists on in order to see the progression of my pain and how I’m handling it.  She does what amounts to a physical except I get to keep my clothes on at these check ups.  

7 Kinds of Fibromyalgia Pain

7 Kinds of Fibromyalgia Pain

We talk about exercise (yoga and some walking) and my diet (vegetarian with little sugar, plus no HFCS or food dyes; reduced dairy and reduced animal byproducts).  She checks my weight (hey, I lost ten pounds since my last appointment!).  She checks how I move; motions I can and can’t make; triggers for pain and other issues; posture; word recall; language usage; asthma and lungs; ears; spine; skin issues; eyes; mouth; reflexes; asks questions about the pain itself regarding location and the nature and quality of the pain.  Um, I forget the term for that.  The… the… diffuse pain and describing what it feels like.  It has to do with the seven types of pain that Fibro-sufferers feel.  There’s an info-graphic I’ll have to try to dig up.

My PCP wasn’t happy with the progression of my pain because A.) the flare ups have increased in frequency and I rarely have occasions of tolerable or “feeling really good.” I have a majority of time where I feel sick from the pain it’s so high, and it affects my sleep, moods, and anxiety levels.  B.) Even when I’m feeling “good” the pain is high, which means my baseline pain, the pain I feel at the lowest possible pain level all over my body, can be distracting.  C.) I have a lot of breakthrough pain where I have to take something in addition to my daily med.  And yet, when I’ve accidentally missed a dose of the Gabapentin/Neurontin (only 200 mg, taken 3X a day = 600 per day), the pain is quadrupled.  I don’t feel side effects, I just feel pain so excruciating I feel like throwing up and wish for nothing but being unconscious.  I didn’t explain things quite like that to my doctor, but gave her an abbreviated explanation.  I tried to hold it in for the appointment.  

She was able to see through my bravado (I had one of my daughters with me) that I was in severe pain in spite of taking my meds exactly as prescribed, and with my insistence that they’re working and minimizing the pain. I insisted I was tired, it had been a long day, and the weather being so cold wasn’t helping matters.  She said,

“Mmm hmmm.  The weather.  Yes that has a grande effect but it can’t always be the answer.  You are doing everything right to minimize your disease and it’s not your fault.  But you know Fibromyalgia is progressive.  You are in a lot of pain.  I see it and you need something more than what I can prescribe.  Your current dose of Gabapentin is as high as I can go.  You take the Tramadol for breakthrough pain, but you don’t want to take it often and usage is increasing, so the answer is the pain management doctor.  I know you don’t want to do that, but my dear, you are at the point that you need it.  Please trust me.”

Sigh.

I had refused a referral to a pain management doctor a year ago and again six months ago.  I think this time, I need to trust her as she asked.  Luckily it’s one in my own doctor’s group, who has a great reputation, and my PCP knows her as a coworker in the same building.

Then she asked me about my current Rheumatologist.  

“So, my dear, I have your list of medications: one for allergy, migraine, one for depression, sleep, and one for pain plus the occasional Tramadol.  But I have nothing listed from your Rheumatologist.  What is she treating you with? How is she treating your Fibromyalgia?”

I told her the simple answer: She’s not.  You don’t see any medications or treatment plan from Dr. Rheumatologist because although she considers herself a diagnostician for Fibromyalgia, she doesn’t feel comfortable prescribing medications for it and believes it’s a sleep disorder.  She refuses to accept that an inability to sleep well is a result of being in too much pain to sleep.  She also believes it’s related to anxiety, caused by anxiety and depression refusing to see those things as being mainly/partially caused by Fibro.  She doesn’t even believe it’s a neurological disorder yet feels a Neurologist is better suited to prescribing Fibro meds or barring that it’s the job of the PCP.

I think my doctor’s jaw dropped. Her lips pursed and she huffed through her nose.

And then:

“Hmm.  I know a Rheumatologist who will accept this referral I’m sending, and since you have the diagnosis and this doctor is my colleague, he should accept you into the practice.  Fibromyalgia is one of the specialties.”

 

Guess what? I  had a message on my home voicemail when I got home from work today.  It was from the new Rheumatologist inviting me to call as soon as possible, and if I couldn’t get to them before noon today to call them on Monday to set up an appointment.  

Suddenly I’m remembering my prayer… and The White Rabbit.

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This morning… bright, sunny, and cold… I saw a white Winter rabbit.  I’ve never seen her before.  Usually I see brown or grey rabbits in my yard, as my yard tends to enjoy heavy rabbit traffic.  We even have a rabbit hole or two.

This rabbit was special.  She was so white she almost glowed against the drab dying grass as we near Winter on the calendar.  She was round, pure white, full grown, nibbling at something, and although there’s plenty of noise on my street due to construction workers and equipment replacing a water main she seemed happy and calm.  She wasn’t skittish even though I’m certain she was aware of her surroundings.

Seeing The White Rabbit felt like everything stopped for a moment.  The background noise of the construction seemed to muffle.  I felt more aware of the sun’s insistence on continuing to rise higher in the morning sky.  My breath caught in my throat and my heart started to beat faster.  I remembered a prayer I made, asking God to help alleviate my pain, help me control my anxiety and the creeping White Tiger of depression.  I remembered asking God to help ease some of the fears and lift the heaviness of burdens… not to remove those burdens but simply to help me carry them without the oppressing weight and near-suffocation.  I asked for him to send me a sign that he heard me.

I just know that The White Rabbit is God touching my morning.   Maybe she could chase away the White Tiger.

You can skip this paragraph if you like because I’m about to take the long way ’round.  Now, I’m really not superstitious.  I believe in God, I believe in Jesus and the Holy Spirit.  I’ve blogged through my spiritual journey and occasionally share my thoughts.   I believe that the core faith is my path, politics be damned, and that it’s the best path, and yes the correct path or I wouldn’t have chosen it.  As a default in being a more, mmm, progressive Catholic I tend to lean away from believing in things like totems, animism, polytheism, and the like.  I don’t judge anyone who does believe those things; they’re just not my thing.

My point, after the long way ’round, is that I don’t believe this was a totem or spirit animal even with Native American and First Nation (indigenous/native Canadians) in my family tree.  I suppose it’s possible, but not likely in my mind.

This is why my White Rabbit feels like God sent her to touch my morning as a sign that he heard my prayer. It felt ethereal, and very similar to past events in my life that felt as my own personal proof of God in my life.  I can’t explain it if you haven’t experienced it although maybe in a future post I might.  I have a few stories you might enjoy.

So I did some research online.  I thought it might be fun just to see what white rabbits mean as signs in my Native heritage and in other cultures.  I found something unexpected, but it feels like reinforcement that The White Rabbit, MY White Rabbit was meant specifically for me.

“If Rabbit has hopped into your life:

Reminds us to examine and utilize the tools we have within ourselves. Although our instincts are innate, they also need nurturing and development. Rabbit meanings deal primarily with abundance, comfort, and vulnerability. Traditionally, rabbits are associated with fertility, sentiment, desire, and procreation.

It may also indicate a need for more planning or to check those plans already set in motion. Do not box yourself in a corner. Be aware that you may also need to examine the kinds of foods you eat. Perhaps a vegetarian diet, if only for a short time, can help you strengthen and heal.”

via Rabbit – A Message from one of our Spirit Animals.

 

I connected with The White Rabbit for a reason.

I realize this sounds somewhat, mmm, fantastical and probably delusional and even superstitious.  That’s ok.  However this happened, even if it’s pure chance, it felt important and needed.  That feeling, and the emotions associated during the brief encounter were validated for me.  My prayer was validated.  And I can’t imagine anything more important right now.

God is love.

 

 

P.S. This was my prayer:

 

Dear God,

I’m having a bit of a hard time lately.  I need your help.  My physical pain is higher than usual, and I think it’s my new normal.  It’s increasing my anxiety and ability to cope with everyday tasks and burdens.  Please send your Holy Spirit to ease the pain, and ease the burdens so that I might continue to carry them and follow through with tasks and participating in life events.  Please help me so that I don’t let my loved ones down.  If you read my blog, God, you know about my White Tiger.  Please keep her at bay.  She’s getting too close to me.  Please, please let me know you’ve heard me.  I don’t usually ask for a sign, You know that, but this time you also know that this control freak needs to know that she’ll get through it all.

Thank you.  You’re awesome and I love you.

Amen.

Jessica

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microwave dangerWe packed up the baby factory years ago.  My youngest is 9 years old going on 40.  I’m turning 40 next month.  Well… 30 with ten years experience.  Seeing babies and pregnant women often makes me want to have more of my own.  I miss the newborn and infant stages… all of the littleness stages.The practicality of it is obvious, I suppose, but the emotions of it aren’t gone so I need a new rundown of why it’s probably good that we’re done having babies.

  1. I’m not a spring chicken
  2. We can come and go from the house without having to pack up lots and lots of gear
  3. The children are mostly self-sufficient and independent
  4. I wouldn’t have to deal with morning sickness that lasts 24/7
  5. We don’t have to think up cutesy ways of telling people that “we” are pregnant
  6. We don’t have to decide if we want to wait or find out the sex of a baby and then answer endless questions about it
  7. I won’t have to hear old wives tales about how I’m carrying, eating, looking
  8. No more diaper changing or spit up unless I’m babysitting for someone else
  9. I won’t have to answer personal questions about pregnancy or jokes about how I got that way
  10. We don’t need to see people’s facial expressions when they hear name considerations that they dislike
  11. We don’t need to worry about agreeing on a name together for a brand new human
  12. We won’t have to rearrange bedrooms for a crib
  13. We won’t have to tip-toe around nap times or worry about getting a baby used to a noisy house
  14. We won’t have to answer questions on what style of parenting we’re going to use
  15. I won’t have to take 6 weeks maternity leave from work and then get so emotional that I have to quit my job to stay home because I just can’t leave my baby
  16. I can look at other pregnant women and feel a little jealous or envious, but the feeling passes
  17. I don’t have to argue for or against natural birth or epidurals or c-sections or hospital birth or home birth or magic wands
  18. I don’t have to share my opinion on “push presents”
  19. I can hold other babies and spend time with toddlers, but I get to go home with my own daughters
  20. I get to keep being the cool auntie to new babies
  21. I don’t have to worry about SIDS unless a newborn is sleeping over my house
  22. I baby-talk at the cats
  23. Toilet training is over
  24. We no longer watch Blue’s Clues and Dora the Explorer on endless loops
  25. I can no longer remember all of the names of each Wiggle
  26. I don’t have to worry about whether I have to defend breastfeeding or bottle feeding
  27. I don’t have to worry about whether I have to defend cloth diapering or disposable diapering
  28. Regarding 17, 18, 26 and 27… I don’t mind my brain to mouth filter quite as much as I used to in my old-ish age
  29. I really need the coffee and pregnancy would hinder that, and more children would increase my need for it
  30. I have a chronic pain disorder and let’s face it, pregnancy would exacerbate my Fibromyalgia
  31. Babies are expensive
  32. We would need all new baby gear and clothes
  33. We really need a new dishwasher
  34. And a new heater
  35. And a new hot water boiler
  36. We could also use some new windows
  37. Maybe some curtains too
  38. I’d also love a new living room set
  39. We also need to get the girls some new bedroom furniture
  40. And I really enjoy being able to get my hair done every few months
  41. We also enjoy buying groceries
  42. And affording coffee
  43. My memory is not what it used to be, and a new baby could end up on the middle school bus while my middle schooler is happily sleeping in a crib
  44. I need far more sleep than a newborn would give me
  45. Or a toddler for that matter
  46. I recently had a dream that I was still in high school and left my baby in the gymnasium because the bell rang and it was lunch time but when I went back the baby was gone
  47. My daughters are perfectly happy with our family dynamic
  48. My husband is perfectly happy with our family dynamic
  49. I’m pretty sure the cats are somewhat, sort of, maybe happy with our family dynamic
  50. My daughters are old enough to do chores and a new baby isn’t
  51. I threw away all of my old maternity clothes
  52. It would be really difficult pushing a stroller and using my cane at the same time
  53. Kitty litter is bad for pregnant women and babies
  54. The microwave oven at my work place… just saying
  55. I have already achieved perfection in the three daughters that I have

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