Tag Archives: doctor

I Swore in My Doctor’s Office Today

http://kubalak.com/wp-content/uploads/2012/01/Swear1.jpg
Picture taken from http://eclecticdad.com

 

Yes I did.  Fucking too.  I said fucking, which is VERY rare (except in my head).  Now before you start thinking this isn’t a big deal, I don’t swear a lot.  Grew up Catholic and still won’t swear around my parents.  I am also patient – to a fault (my ex is an alcoholic and we were together 12ish years, I waited until my bones were dissolved and almost unsavable before going to the surgeon, I didn’t get loud enough with my knee surgeon, I can go on).   It has to stop.  One has to be realistically patient, but there are times a full on fucking tantrum is not only acceptable, but needed.  Here is why, and it will not include the story of today since I am still with that doctor.

Bad Record Keeping

This is huge.  I dare you to go get your medical records.  Do it!  You won’t get the results you expect, especially if your physician uses electronic record keeping.  I experienced this MULTIPLE times in Georgia, and with one of the “best in the state”.  The highlight of it was when I was injured and had knee surgery.  The surgery didn’t have the expected positive outcome, and I needed longer opiate care.  My surgeon called and spoke with this doctor every month, and sent written letters.  I also was in there – specifically to document the bad knee and that this wasn’t RA related!  She did not keep the documentation on the opiates, so when the pharmacy called about the prescription – she claimed she had no clue what was going on.  Now, I was in the week before SPECIFICALLY for this issue and documentation.  My knee documentation was in there though right?  Nope.  There were a few things, but not the majority of the issues.  When I got the call from the pharmacy, I even brought them AND this doctor the documentation she was lacking (from the surgeon), but she refused to take it!   I was livid, so I got a copy of ALL my medical records and fired her.  This is why we are being targeted by the DEA folks!  My doctor’s lack of record keeping could have resulted in something very serious for me, and I know I was not the only one in that boat.  Thankfully, I kept records and now I keep my own medical as well.  I get copies of everything before I leave the office.

Too Many Patients to Care

Yes, most doctors are good people who truly care about their patients, but not in an “I know you as a neighbor and human” care.   I know this sounds mean, but when your doctor has so many patients, it is impossible for them to deliver that gold standard of care.   The practice becomes more about numbers than people.  Wait times to get into doctors that only see you for 15 minutes are atrocious.  Generally, you can get a thorough check on your first visit, but after that – nada.  You become very numerical.  Ever have a physician see you get worse, yet keep you on the same treatment for over a year?  I had one that would talk about switching things around for over a year, but again never document anything.  When I asked the office staff or a nurse, the usual response was “let’s wait until the next time I see her”.  I actually got to the point I stopped ordering Remicade, because the drug was no longer working and I wasn’t paying that much for nothing.  When I did that, the doctor’s office ordered it without my authorization and it was charged to my card.  Needless to say, that was also stopped immediately after a tantrum with both Aetna and their office.  That did, however; finally get her to switch me to Actemra.  She had so many patients that the average wait was 2.5 hours to even get in a room, so the documentation was something that never happened.  That causes my next issue.

Autoimmune Marginalization

Most doctors are trained without the current research, and most of the symptoms associated with autoimmune diseases are still scoffed at.  We are the “too sick, but not sick enough” to matter in society.  We don’t look sick (most of us), and we aren’t going to necessarily going to die soon.  I truly believe a lot of our doctors buy in to this mentality.  Many rheumatologists don’t  consider autoimmune arthritis potentially fatal, and others don’t even recognize certain organ involvement with ones like RA.  (Despite the extensive documentation.)

I am always shocked at my doctors reactions as I tell them my symptoms.  Every single one seems utterly surprised that I have the issues I do.  Surely, I am not the only person with dissolved bones, organ involvement, muscle seizures, etc.  I cannot be the worst or even close!  Judging by the groups on social media, there are many more like me!  So why the shock and awe every time they see an MRI or x-ray?  Because they don’t believe we hurt or feel THAT bad.  The doctors have marginalized our symptoms and are treating only the squeaky wheels.  So time to be a fucking squeaky ass wheel and unleash some “bite-chas”!  I stole the “bite-chas” from an awesome friend!

Tantrums Can Be OKAY

While I do encourage you to be patient and always use kindness (I did not personally insult anyone today), there are definitely times you need to let that dragon out.  We are also allowing them to get away with these things otherwise.  No one wants to be angry, heck it uses MORE spoons than I get in a month – but I am done being nice.  I am done waiting until something is broken beyond repair before I push to get it fixed.  I am just done with people screwing up my health.   I always wonder if I had started Actemra earlier, and at the right dose (another issue with this doctor), if I could have avoided some surgeries.  I wonder if I wouldn’t have lost so many knuckles had I gone to my hand surgeon sooner.  (Best hand surgeon EVER actually.)  This also means I need to get my undiagnosed, diagnosed, my knee looked at, my back xrayed, and my feet xrayed.  So this will be a “hear me roar” year for all these doctors involved.  I somehow sense several tantrums and some “difficult patient” labels.  Bring it.  This may not be the last time I swear at a doctor’s office.

How I broke the chain of Opana ER

**This is my story, and know upfront I have been working with my Doctor on this.  ALWAYS CONSULT A PHYSICIAN BEFORE CHANGING YOUR MEDICATIONS.**   (Phew got that out of the way.  I don’t want someone reading this to attempt it without their doctor’s supervision.  It could kill them if not done properly!)

So before I get started, I want to mention that medical marijuana is like any other medicine.  (See the blog about the marijuana pharmacy).  There are strains like aspirin, strains like ibuprophen, all the way to strains like Opana.  Some are like Ambien and some like Zofran.  Basically, you have to do some research and try different things out.  Don’t give up if you don’t find a good strain the first time.  It took a couple weeks before I found the Alien OG that replaced my Ambien.

Most of you know that this was a forced process, but for those who don’t here is a short recap:  I was unable to reliably get the narcotic extended release medicine that I had been on over 18 months.  In total, I have been on narcotics for almost 5 years.  Not as long as some, longer than others.  So I really just walked into a recreational shop (no red card at the time) just as clueless as could be, told the budtender what I needed and followed their recommendations.  I don’t recommend you start that way.  I walked away with one strain that worked well for sleep (Nehi Grape) but 2 that didn’t work too well for me.

My research was done after having cannabis in my possession.  Because my initial reactions to cannabis were not that fantastic, I had not been considering it as a medicine.  However, my ability to sleep was really amazing!  That was what kept me interested enough to start the plethora of research that led to this blog!  I was sleeping!  That was HUGE!  I usually got no more than about 10 hours of sleep a WEEK!  Sometimes I would be awake for 7 days straight!  I did not sleep well before marijuana, but had been consistently sleeping since (but was waking up with a little grog)!  So the more research I did, the more I knew what to ask for and how to find it.  I also saw the CBD information which completely made me salivate!  By this time I was almost out of the Nehi Grape (I only bought a joint to vaporize, but it lasted almost 3 weeks.)  I found a store that sold Harlequin and R4, so I decided to head up to Denver.  (I don’t live in an area that allows recreational marijuana sales.)

Whilst in Denver, I was able to get the Harlequin, but I was exposed to Alien OG!  That was the best strain for my insomnia!  No groggy feeling in the morning and continuous, restful sleep!  Finding something that effected me so differently let me see that the different strains all offered different possibilities!  Still though, I was only looking at relief for my insomnia.  UNTIL…

No pharmacy in my entire city had ANY Opana ER.  None.  Some pharmacies mentioned that they had ordered it, only to be shorted that in their shipments.  The soonest any of the pharmacies would get it would be 7 days from that time.  Unacceptable.  I had used the same pharmacy for the last 7 months, but now the DEA decided to short the enitre city of patient’s medicine.  Nice.  I started calling Denver (60 miles away) and the only pharmacy that had it, only had half.  I decided to fill that part, but this fiasco left a bad, bad taste in my mouth.  I didn’t want to half to worry about this any more.  Abruptly stopping Opana ER can cause both respiratory and cardiac arrest.  Running out is a trip to the ER, and not having medication for 7 days is a serious flare in addition to the withdrawal!  There had to be another option.

Doing the research prepared me to actively wean off the oppressive narcotics.  While I am not off ALL narcotics (as you will see), I am off Opana ER, which is HUGE.   The first thing I did was google weaning stories.  Most were written by addicts  and recreational users, anyone who has been on them for a long period of time is physically addicted to them.  Try to glean any important information from these articles.  What worked and what didn’t?  Take notes.  Research what options are available to you, and come up with a treatment plan for after narcotics.  It is easy to say that you want to wean, but you need to work out a plan that both you and your physican are comfortable with.

Once my research was complete enough for this, I presented a plan that I thought might work for me.  I was currently taking Opana ER 60mg daily for long term pain management and tramadol 50mg for breakthrough.  We decided to switch the Opana ER (oxymorphone) for Ultram ER (tramadol) then switch out the tramadol 50’s for oxycodone 10mg.  This would allow me to continue weaning, but have something for breakthrough whilst coming up with a plan for daytime pain management.  I have not told my doctor about using cannabis.  This is a new physician for me, and I don’t know him very well.  Ultimately I would like to address this with him (he is an awesome rheumy, and the apprehension is very unreasonable with this doctor.)

The idea was to reduce the Opana ER by 25% every 5-7 days.  When I got to 20mg, I would switch over to the Ultram ER while replacing my breakthrough medicine with oxycodone 10mg to complete the wean, if possible.  Remember, I can’t take NSAIDS because of my kidneys.  My pharma options are tramadol or narcotics.  This is it.  This last phase is where I am at in the process.  I am off the ER narcotic and down to about 20mg daily of oxycodone.   Basically, I am off 2/3 of narcotics and on a less dangerous one for the other 1/3 of pain management.  Despite the fact that I am not completely off narcotics yet, I am incredibly excited to be able to say that I no longer need 3 pharmacuticals that I had been on for years!

Tips:

  1. Only wean one medicine at a time to see how your body reacts to it.  Not everyone is going to be able to wean, simply because their pain may be too great.
  2. Wean slowly.  Never reduce your opiates more than 25% at a time, and some may require an even slower reduction.  Listen to your body.   If you are using cannabis to ease the withdrawal symptoms, be sure you stay on top of it.  Us ladies know when you let the cramps get super bad, they are harder to stop.  Same principle here.  Don’t let the withdrawal get bad before you use cannabis to treat it, else it will be harder – if not impossible to treat.
  3. For the first few days you lower a dose, you will feel some withdrawal.  The idea is to keep your dosing to where the withdrawal is minor and managable.  You don’t want to reduce so much that you are in a dangerous situation.  Keep in mind you are weaning, and be okay with that taking some time.  Some people take months before getting to where they are comfortable.  Be willing to adjust your dose back up if you have to, and to be on specific reductions longer to allow your body more time to adjust.
  4. When using cannabis to help, it is a good idea for you to be using cannabis about a month before you start the weaning process.  You need to know how you react to cannabis and have found both daytime and nighttime strains/products to meet your needs.  You don’t want to be withdrawing from opiates and experimenting with cannabis regimens at the same time.  First decide if cannabis is right for you – and IT IS OKAY IF CANNABIS IS NOT FOR YOU!
  5. Be okay with what ever end result you have.  Not everyone will get off narcotics.  I am actually not expecting to be able to discontinue ALL my narcotics.  I am a former JRA patient and now have 40 years worth of damage and morphing into that ridiculous autoimmune soup that we all eventually get.  Even if I stay where I am at, 20mg of oxycodone daily, I am super happy with where I am at!