Much Goings On

Hospital (Photo credit: José Goulão)

     I know I know, it took me awhile to get around to my blog.  Apologies to all my readers, life has been crazy.

     I’ve always written that I want to be honest and true to myself in my writing, otherwise what’s the point?   It really was a rough summer for me and a personal low.  I think I already wrote about my new ulcer, if I haven’t just know that I have a new ulcer.  I think it was July when I landed  back  in the hospital and my labs were really good so I thought I would be going home, I didn’t realize that right behind me my blood pressure decided to do something ridiculous like be 50/30, so once again I found myself in ICU. 

     I think I’ve always made it clear to everyone that I’m a chronic pain patient in pain management and on some pretty heavy pain medication, and when I can’t keep anything down that includes my pain medicine so by the time I get to the ER I’m in pretty rough shape from the pain.  However I knew there wasn’t a lot they could do for me with my low bp, but by the next morning it was back to normal.  The doctor came in to make rounds and I asked him to put me back on my oral pain meds or injections and imagine my surprise when he said no that every time I’m in the hospital I’m on morphine and  I was a drug seeker.  Really?  I had my meds in my purse not 5 feet away from me.  I explained that to him to no avail.  I was so upset I left and I just managed to stay out of the hospital until last night.  A couple of trips to the ER aside.

     evidently, he was the only doctor on staff who felt that way, because every time I’ve been in the ER I’ve been given pain meds and no, I didn’t ask for them.  I guess I’m now a little defensive about the whole damn subject.

     Last week, my husband had to have arthroscopic surgery on his left knee and he’s been out of work for the better part of a month and I can’t remember a time when we’ve been this  broke.  Don’t get me wrong, we’re getting by day by day but wondering where the grocery money is going to come from is stressing us both out.  Did I mention we’re supposed to move in about 11 days and I have no idea where the money to close is going to come from?  I’m keeping the faith the Lord will provide.

Pain is Consuming Me

     I have had the worst week.  This is NOT how I want to live my life.  My back is on fire and it’s getting me angry.  I feel like I’m fighting to have some grace and I’m losing the battle this week, it’s hard not to get discouraged.  My pain has been out of control and I just haven’t been able to get a grip on it.

     I’ve been putting off getting surgery for my 3 herniated discs, I’m so tired of it, and frankly this one scares me.  However, this morning my left leg was completely paralyzed for several hours then I spent several more hours with the worst pins and needles.  It was hard not to cry out loud and I’m ashamed to say I didn’t succeed.  The dilaudid is finally kicking in and I’m starting to feel some relief.

     So this morning I went ahead and made the appointment with the neurosurgeon, I feel like I’m at the end of the road and I just can’t live this way any longer.  I think I’m indulging in some self-pity today and I’m praying for God’s grace to help me get through this.

     I miss Michelle so much, I have to believe that depression must be part of why I’m going through such a hard time with my pain.  Never pass the opportunity to tell someone you love them.  I’m glad I did that with Michelle.

Speaking of Morphine

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     It’s funny how you start to remember things.  On the same note as my last post, I’ll be speaking of morphine once again.  I don’t remember the particular reason for this admission but I do remember being on a morphine PCA.  A PCA is patient controlled analgesia, which basically is an IV pump with a button allowing you to administer your own pain meds as needed.  Now you can’t just hit the button willy-nilly, it’s programmed with your dose and the timing of that dose.

     What made this particular occasion so memorable is one time when the morphine syringe needed to be changed.  The nurse came in with the box from the pharmacy, sat in the chair next to me while she did some paperwork and then she opened the box.  The box appeared to unsealed and perfectly legit, but when she opened it, the syringe was completely empty.  The look on her face was one of genuine surprise.  I’m sure mine was the same.

     I do know there was a lot of paperwork to fill out, some of which I signed as well.  I never did find out what happened but I do know this seems to be a taboo subject.  I have read that there’s a fairly high rate of drug addiction among the medical profession, but it’s not really something I read about in the blog world.  I read quite a few blogs written by Doctors and Nurses, most of whom blog about all of the drug seekers among patients but I’ve never read a single post about drug use among hospital staff.

     There is so much disdain for the “drug seeking” patients, and I’ve no doubt there are quite a few of them, and I can only imagine what that would feel like day in and day out.  In fact this letter was posted in every patient room in the ER of the hospital I go to.   I was going to take a picture of it but didn’t have my camera with me.  This is the jist of it:  If you are here for chronic pain you will only be given non-narcotic pain relievers.  There will be no refills for narcotics or sedatives of any kind.  Every patient will have their prescription drug use for the past 24 months checked by the ER doctor on the state data base.  If you are not here for chronic pain and you need narcotic pain relievers you will only be given them if you have a licensed driver over the age of 18 to drive you home.

     So, I am aware of what the profession is up against, on the other hand I also try very hard not to appear to be drug seeking whenever I have to go there.  I never know if they suspect that about me or not.  I never ask for pain meds but I do have issues with some meds that might be a red flag.  I can’t take any NSAID‘s due to the severe GI bleed I had with one in particular.  It’s not an allergy, but it is a reaction, also I can’t take a lot of Tylenol because my liver enzymes are usually elevated. 

     I will say that all of these issues are well documented medically and due to my history the doctors and nurses know me pretty well.  In fact some of the ER docs know me so well that before they even see me, being busy with other patients and all, they’ll give orders to access my port, usually running fluids in wide open and in fact will order phenergan and dilaudid, and labs.  However when there is a new doctor he will examine me and usually order toradol, and I have to turn that down I always feel like there’s an immediate suspicion.  They’re also surprised when I give them my med list to find that I’m on dilaudid and morphine at home, and I have to admit to being a little defensive about it.  I guess I have to work on that.

     My philosophy on pain medication is that for me, it’s a tool.  It allows me to live and participate in my own life.  I can do laundry, and make my husband dinner.  I can jump out of the occasional airplane, and kayak, and next summer I want to try paddleboarding.  I’ve been on the same dosage for well over a year and so far it’s still just as effective. So, that’s where I’m at on that subject, as always I thank you for reading and welcome your comments.

What Was this Doctor Thinking????

     A couple of months after the hospital visit in Indianapolis I got really sick again.  I’m 5’6″ and got down to 110 pounds.  On my large frame it looked terrible.  I was having a pancreatitis flare-up and I was throwing up so much.  My poor husband said I looked like I was wasting away, and told me I really needed to get back to the hospital.  I knew it but was trying to avoid it.  It was time.

     I didn’t go to my usual hospital, I couldn’t deal with the 10 mile drive as sick as i was feeling so I went to the one right down the road from me.  They were bought by another hospital and I was starting to hear good things about them.  I should have known better.

     When I got there the nurse was one that I knew and was very kind.  I told her what had been going on with me and gave her my updated med list.  The doctor came in very quickly and asked me about the dilaudid and morphine, he wanted to know if I had the bottles with me in my purse.  I told him they were at home in a lock box and should I have someone bring them in.  He said not to bother that he would just verify with the pharmacy.  No problem though I thought it was unusual given that it had never happened before.  I also gave him my history and one of the things I mentioned was that when I was on antiflamatories before I got a GI bleed so severe that it put me in a coma and when I arrived at that very hospital my blood pressure was 40/20.  Easily verified because it was at the same hospial.

     He ordered phenergan for the nausea and torodol for pain.  Torodol is an antinflamatory which I refused due to the high risk of GI bleeding.  Then he hurt me.  He ordered a shot of nubain which is a narcotic with an opiate blocker, though I didn’t know that at the time.  He knew and verified with my pharmacy that I was on daily narcotics, the dilaudid and the morphine.  Anytime one is on daily narcotics they develops a tolerance to them and going off of them abruptly will cause physical withdrawal symptoms.  The pain medicine he gave me put me in instant withdrawal thereby making me sicker.  It took a good 6 hours to wear off and at that point I really did want someone to bring in my dilaudid and morphine.  I looked up the nubain when I came home and the manufacturer clearly states that it is not to be used with someone who is on daily opiate/narcotic maintenance, due to the risk of withdrawal symptoms.

     I’m so angry, why on earth did that doctor do that to me?  What was he thinking?  As a patient I have the right to appropriate pain management and that is not what I got.  How could I address this in the future?  I feel like anything I do or say is only going to make me appear “drug seeking.”  I wasn’t seeking drugs I have them at home.  I was however looking for pain relief and that is not what I got.  I feel like the doctor saw my med list and made judgements based on that.  The lab work supported that I was sick and in fact was admitted to the ICU.  The doctor making rounds in the morning would not change the ordered meds and I can only wonder if this is the hospital culture, to avoid the use of effective pain medicine.  I gave them my pain managements number and urged them to call him.  Of course that did not happen.  Please comment and hospitals workers please chime in.  Should I avoid this hospital al together?  That’s what I’m thinking now.

Pain Management, A Stroke, and How I Hurt My Arm

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     I saw a pain management doctor last week.  He took me off the percocet due to the Tylenol and my liver enzymes, and changed up some of my other meds.  I really liked him.  He got into how my pain is affecting my life and thinks we can maximize my pain meds to improved my level of functioning.  I’m definitely feeling “stoned” from the new meds but he assures me that my body will adjust.  I’m doing more at home and I’m looking at the meds a little differently,  instead of seeing them as a crutch, I’m seeing them as a tool that allows me to participate in my life.  As Martha Stewart would say “It’s a good thing.”

    A very scary thing happened Saturday evening.  Rudy and I went for a golf cart ride and he ran over the mailboxes in front of our house.  I didn’t really think anything of it except that it was an accident and kind of a funny one at that.  When he turned around he narrowly missed the utility pole and I thought he was just being a smart ass.  We continued on and he was driving so close to the right hand side of the road that it was starting to scare me.  I still thought he was being a smart ass.  He hit a tree that caught me in my right shoulder and pulled it all the way behind me.  The pain hit so fiercely that I immediately vomited and started yelling at Rudy to take me home.  He was looking at me blankly and wouldn’t stop driving.   He kept narrowly missing everything on the right hand side.  I was starting to panic and was yelling at him to either take me home or stop so I could walk home and he kept driving past our street.  He finally dropped me off, and I ran into the house cradling my arm.  A neighbor of ours was sitting outside and he later told me that Rudy hit his truck twice and the fence leaving again.

     When he got back he came into our bedroom and kept asking me why I was so mad at him.  All I could say is “Are you kidding me?”  I told him what he was doing and I noticed he still had a blank look on his face, when it suddenly hit me what might be wrong.  I googled stroke symptoms, asked him a few questions and had him take his blood pressure.  I knew we had to get him to the hospital, but he was so hostile with me it was like he didn’t even know me.  I went to our neighbor and one of our best friends and told him I think Rudy is having a stroke, please come down and see if you can help me talk him into going to the hospital.  That’s when he told me about Rudy hitting his truck and the fence.  He came down and told Rudy what happened and he finally consented to letting us take him to the hospital.  Cat scan showed no brain bleed and we followed up with our own Doctor on Tuesday who told us this could absolutely be a residual effect from the electrocution.  He also said this might never happen again, but he wants us to follow-up with a neurologist as a precaution.  Basically he thinks Rudy might have thrown a clot.  He referred to it as a transient ischemic stroke aka a warning stroke.