random babble…

When 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.

Sometimes, though, the headaches still break through.  That is where the pill above the Topamax comes in.  If you have had major surgery you might recognize it.  It’s Promethazine, or Phenergan, usually prescribed for nausea caused by anesthetic, but has an off-label use of relieving headache pain, and being a mild sedative.  This I can cut in half and only use during those times I have headaches not held off by the Topamax, and greatly reduces my need for a narcotic pain reliever.  Because it works as a pain reliever it also helps me sleep when the pain is bad.  Always a good thing.

Which brings me about to the big pill…my buddy, House’s and yours, Hydrocodone, or Vicodin.  I have given up any delusions that I can live my life without one, and my doctor gently agreed.  She understood my concerns of addiction and dependency, but reminded me that regular OTCs won’t help me with the breakthrough pain that my regular meds won’t cover.  Something I often forget is that Vicodin does something that a lot of scoffers don’t think about (something apparent if you watch House); it gives me some of my life back.  It lets me do frivolous things like get out of bed, cook meals, go places with my family, and even have sex with my husband, which is something that many doctors don’t consider in patient care.  People are too quick to assume that someone using Vicodin is automatically an addict, or that they aren’t “managing their pain”.  But those of us using Vicodin are doing exactly that are managing our pain, with the advice of our doctor, in a manner that is right for us and our families and loved ones.  That choice is between the patient and hir doctor, and family/loved one if zie chooses to share.  If.  A 30 day supply, thanks to the Topamax, Lyrica, and the as-needed Phenergan will last me about 90 days, give or take.  It’s a total win for me.  Plus, my doctor is so awesome that she has given me her email to allow me to renew the prescription without a lot of hassle.

The pink pill is Meclizine, or Antivert.  It is an as-needed pill for dizziness and nausea caused by Labyrinthitis, which puts a picture in my head of David Bowie whirling like a dervish.  It is chewable, and I have to take it with a small amount of food.  The dizziness was a new symptom, because for some reason my tympanic membrane has been billowed out for quite sometime, causing me intermittent vertigo.  Again, since it is as-needed, I don’t mind it so much.

The last pill is for the chest pain I have been having, which is apparently the result of a suspected spastic esophagus, and is Zantac.  It is another as-needed pill.  The chest pain is rare, and new-ish, so there is no reason to have a regular med.  I can also try to take Tums first, the doctor tells me, so the need for this med might be less than that.

There is also a cream for the inexplicable rashes that recently have developed on my arms and legs, which sometimes respond to a topical Benedryl, but sometimes doesn’t.  It is a steroid, so it is another thing that I can take only if I need it, and only if Plan A doesn’t work.

I can not stress enough how wonderful it is to have a doctor who prescribes things that I can take only if I need them.  This keeps me from taking too many things at one time, and reduces the chance I will have an interaction complication.  I also can not stress enough that pill are not all bad all the time.  It is certainly true that there are probably people out there who abuse pills and take too many of them.  It is probably equally true that some doctors are too quick to prescribe too many meds too quickly to make a patient go away.  But at the bottom of the medication issue is the fact that how much or how many meds a person takes is between a patient and hir doctor.  It isn’t the job of a drive by concern troll to judge or offer suggestions on the care agreed upon by those parties.

*That’s a joke.  What that means is that it keeps me from being in so much pain that I literally can’t get out of bed, while letting my life pass me by.