exactly that

Posts tagged ‘fibromyalgia’

Where I jump in and defend pills…

DSCN4456When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug.  Or, they will insist that we are just addicts who refuse to find ways to manage our pain.

And for some of us it is a type of shaming that is hard to get out of our heads.  For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them.  It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.

I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care.  It was incredible and refreshing.  She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back.  That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications.  She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s.  This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors.

So, now there are pills.  Seven of them.  Only two daily use, and the rest to be used “as needed”, which is something I rather like.  The Lyrica and the Topamax are gimmies, because I actually get some benefit out of them.  They improve my quality of life in a general manner.  Those are the the red and white one and the tiny yellowish one next to it (the jelly beans in the picture were my idea of a funny…HA!  C WUT I DID THERE?).  Lyrica helps me not want to throw myself out the window* (which would be a feat w/ the window protectors on our sliding door-sized windows).  In other words, it means mobility and movement, once I have adjusted to the side effects.  Yes, it takes a while to adjust, but it is worth it.  The Topamax, and anti-convulsant, is given to me off-label for the constant Not Migraines that I have (24/7 for almost 5 years now).  It dulls the daily pain, and sometimes gives me mostly headache free days, which liberates me to do silly things, like stand up.  It also has side effects, such as a metallic taste in my mouth.  But I know this, so I expect it, and the benefits outweigh the gains, and eventually they fade.  For now, I switch to plastic cutlery and all is well with the world. (more…)

5 docs, 3 years, 2 psychs, 1 day in the life of…

Moderatrix’ note:  I wrote this on 16 November, 2008.  For some reason I thought I had written it here and I did not.  I am sharing it now, because I want to show how disability and medical care intersect with Military and Veteran’s issues.  Something I want to bring attention to is just how difficult it is to get continuity of care as a Veteran, and the challenges involved in getting disability from the Military or the VA.  If I had a way to work in the system to improve it I would take the opportunity.  For now, I will work on bringing awareness to the topic.

Thursday I met w/ a new Primary Care Manager.

This is my fifth official PCM in about three years. I have also had several other general practitioners b/c each of those PCMs was either retiring, deployed, or otherwise unable to treat me. The most I have seen any of them is about five times. I have also in that same amount of time been seen by two Psychologists, one Psychiatrist (b/c it’s all in my head, yo!), a Chiropractor/Kinesiologist, a Physical Therapist, two Neurologists, a Rheumatologist, and a Dietitian (b/c if only I wasn’t a big fatty I would feel better!).

I have been on Vicodin, Oxycodone, and at least three other narcotics over the last three years, no less than five sleeping medications, two allergy meds (for inexplicable rashes), three different anti-depressants, two anti-convulsants, any analgesic that is available, and five medications that hadn’t been available for more than a month.

I have been over medicated, under medicated, drugged out of my mind to the point where taking all of the pills in my cupboard sounded like a good idea (but I didn’t, I flushed them and got help instead), tried herbal remedies, vitamins, supplements, diets, and countless other suggestions. I have tried hypnotherapy, electroshock therapy, heat therapy, cold therapy, and physical therapy.

(more…)

A Letter to “Normals”

I take issue w/ the word “normal”, but wev.

Found this a long time ago at fibrohugs.com

The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,

Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand….

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The wonders of patient care…

Yesterday I am pretty sure that the doctor I met for the first time is the fifth Primary Care Manager I have been assigned in the last three years, and I have seen at least three doctors who were not my PCM out of necessity during that time.  During that same period of time I have also seen two Psychologists and one Psychiatrist, two Neurologists, a Rheumatologist, a combination Chiropractor/Kinesiologist, Physical therapist, and a number of doctors as part of a team in a Chronic Pain Clinic.

But as far as PCMs go I see the same one maybe twice before being shuffled off to another doctor.

When I met Dr. W yesterday, the first thing he told me is that he doesn’t really treat chronic pain patients, but from looking at my record he could tell that wouldn’t be new information to me.  He can tell from my record that I am frequently shuffled from provider to provider.  He said it looks to him as though I am being shuffled on purpose to make me look like a drug seeker, which is funny, b/c I will rarely allow a doctor to give me narcotic pain medication.  Normally I will tough through it as best as I can, much to the dismay of my loved ones.  I am not surprised by this information, b/c the last doctor I went to desperately in need of help did in fact treat me like a drug seeker, only to apologize to me later.  Dr. W felt sorry for me, seeing that I can’t seem to get constant care.  He wanted to know why I wasn’t in the Pain Clinic, which I informed him is only for active duty personnel, and I am no longer that.  He wanted to know why I wasn’t in physical therapy, and when I explained that all the other doctors seem to want to pump me full of anti depressants and shuffle me off to Psych, he said that made sense, and that he was sorry.

Then he listened.

He listened when I told him there is nothing wrong w/ my mood, except that being in pain all the time pisses me off, but that I don’t see any benefit from anti depressant therapy, so I am disinclined to continue that course.  He understood.

So, we are back at square one w/ meds for migraines (actually, yay!), labs (oh how I love labs), and a promise to follow up in a week.  Oh, and I get to go see the same Rheumatologist who told me I have fibromyalgia but who made sure to not put it in my Navy med board so that I couldn’t get any benefit from the Navy for it.

So here we go again.  The only difference is that this time, I seem to have a doc who will listen.

I am not holding my breath.

i am officially

Photobucket 

(Pic via)

out of spoons today.

 

so, since i will not be available to amuse you all, Readerland, please, visit my blogroll, hit up the archives, check the Thursday Blogwhore and hopefully i will be back in full swing tomorrow.

the shoulda been Tuesday post

i have been a little tired lately.  i have a lot of projects waiting to be finished, and about half the energy to complete them.

the ones that involve the Kid come first.  she and i have a project to finish up soon.

but then i have a few rants in line.

so, if i am light on blogging lately, that is why.  i am tired.

but don’t go away, readerland!

i will be up in full babble mode soon.

so much to do

and so little time.

i have a thank-you post to write for birthday goodies.

i have to respond to being tagged.

i have to finish a few posts i have been working on.

 

all of that, and i am working the 0400 shift at work all week, which means i have to be up at 0200 (c’mon, gods don’t get up that early).

i forgot to wish my awesome young cousin happy birthday yesterday.

i have to finish my taxes (tomorrow!  i am getting it finished tomorrow).

i have several emails to catch up on, including one to a new(ish) friend, and one to a dear old friend, that is going to take a while to write.  i have missed hearing from you, friend.

and i need to rest my body, b/c it is hurting me right now.  a lot.

 

but i need to take a moment, right now.

although my blogroll is diverse, w/ a little bit of everything from feminist sites to sites written by dogs, there are some on there that i have included b/c i first loved their sites, and then valued their friendship as a result.  this blog thingy, while giving me the outlet i have so greatly needed has delivered me into a community of people among whom i have found a niche.  if you have become a friend in my blogroll, you should know who you are.  if you are unsure, you probably are, but go ahead and ask, i will only mock you slightly in reassurance.

lastly, thank-you to anyone and everyone who stops by here, w/ your comments and support.  you keep the blog thingy going.

and now, i rest.  if i feel better in a little bit i may do my Thursday blogwhore, as i have been compiling for it.

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