New plan…….

Anyone who deals with a chronic illness that requires medications or treatments can tell you that it becomes routine.  It becomes “normal,” whatever that is.  It started with my lupus diagnosis in 1998 and goes on up to this minute.  

At one point, I was using medication patches. That only lasted a little while.  My allergy to adhesives took control and they began destroying the skin wherever they were placed.  Fun, right?  Back to a plan involving oral meds only.   

During the last eighteen years, I’ve intermittently been on various medications and had innumerable treatments.  Calculating that figure both stunned and horrified me!  I’ve benefited from some of them and had bad experiences with others.  I even had an anaphylactic reaction to one med when I was home alone.  Talk about scary.  From that day on, my husband and I have had a deal: No new meds will be tried unless he is home. My sensitivity to certain drugs seemed ridiculous at times.  “Are you allergic to any medications and what were your reactions?”  “Well, let’s see……how much room is alloted for the answer?”  

As I write this, I’m reminded of an experience dh and I had a few years ago.  My legs started swelling up ridiculously and, naturally, I thought it was the RSD.  Nope!  My doctors diagnosed cellulitis in both of my legs.  I was told to go straight to the ER to be admitted.  Mind racing, I began bargaining with the doctor.  I needed to go home and settle things there first.  My promises of elevating my legs and not leaving the house were deflected with an enthusiastic  “NO!”    My doctor would call for an ambulance to drag me there if she had to. Finally, I agreed that I’d check myself into the hospital later that evening.  My daughter wasn’t even out of school yet and arrangements had to be made.  Plus, my husband needed updating about this fresh drama.  

We arrived, as promised, and waited to see a doctor in the ER.  When our time came, I was greeted by a young man who seemed friendly enough.  After he spoke to us, fairly stunned by my medical history, he excused himself to “check on the room situation upstairs.”  There was a phone outside in the hall.  We heard him calling the unit, as planned, but then he lowered his voice – though still audible to us – and said something to the effect of, “You need to get down here.  This one is a medical freakshow!”  What do you say to that?  How do you recover when someone says that about you but returns smiling normally???   I’m pretty sure we let him know that the ER walls are not soundproof.   That was just one of my many lovely experiences as a patient.  

I got away from my main point with that crazy story. We have all had experiences like that. It seems, sometimes, like we have very little control over ourselves.  That’s scary.  It’s terrifying actually.  As a registered nurse, I always made a point of trying to make my patients – and their families – comfortable. I was astounded to see the the lack of respect and compassion from certain medical professionals.  It’s just not how I work or how I conduct myself in any aspect of my life.  

Back to my update! I really want to get an updated list from my pharmacy to see exactly how many different meds I’ve taken over the years in an effort to function “normally.”  Since the pump was shut down and withdrawal kicked my backside all over the place, I’ve been trying to get back to routine.  It will absolutely be a surprising walk down medical memory lane.  “Oh, I forgot about that drug!”  “I don’t even remember taking that one.”  Those are just a couple of the phrases I anticipate saying.  

The various patients I’ve spoken to – with RSD – have had similar experiences over the years.  One day, I was sitting in the waiting room of one of my many doctors, talking to two other patients.  This younger woman and middle-aged man told me about their chronic pain.  We bonded over good days, bad days and all of the in-between.  Other than our illnesses, we had very little in common.  But chatting amiably with these two strangers somehow made me feel less alone.  Does that make sense to anyone?  There’s an online RSD group that I belong to.  It’s so wonderful having people who can relate 100% to my experiences !  We give advice, ask questions and just share the day to day stuff.  When I was first diagnosed, I traveled about an hour away to the nearest pain support group.  It was lucky that one was even that close to home.  When it disbanded, it was so lonely.  Having problems that no one has ever heard of can be emotionally and mentally painful.  So I recommend looking for kindred spirits, even if it’s online!  Make sure it’s a reputable group.   Tell me in the comments section about your experiences.  

So my new plan involves the news that my lupus has returned.  That’s my spectacular immune system for you.  Back on plaquenil and still on all of the other meds, my body is trying to adjust – it’s not easy.  I’m exhausted and am more forgetful than before.  At least I think so. 

My intrathecal pump is still off.  I decided to wait a month and then reevaluate starting it again.  My docs said they’re ok with it as long as I keep moving, without overdoing it. Obviously I’ll keep up my meds. And I’ll try to desensitize my skin when it acts up.  It’s a bit like a self-imposed physical limbo, but I need to do it.  It’s like hitting the reset button on my medical chart.  

Once the withdrawal started to ebb a bit, I realized that I was uncomfortable, but not incapacitated.  I was exhausted, but managing.  It was like waiting for the other shoe to drop, but it didn’t.  So I put the brakes on the surgery.  Don’t get me wrong, I have pain and fatigue like I haven’t had in a long time, but maybe that’s what I need to feel right now. I’m not being cavalier about any of this.  

We were thinking back to why I got the pump put in at all.   I had maxed out the safe number of procedures involving epidurals and the like.  I mean, my husband and I were there so often (every 5-6 weeks or so for years!) that everyone from the security guards to the docs knew us.  “Where everybody knows your name!” The pre-op nurses would be smiling, “She’s back!” But then we’d all be sad that the previous procedure hadn’t worked.  It was too much.  So, finally, my doc announced that we’d arrived at “the last resort.”  When all of those other treatments started, he always said that “the last resort” would be getting the pump.  I knew it was coming. 

Before you can get the pump, you undergo a trial.  The patient is admitted and stays in the hospital for a few days to a week to see how their body reacts to the medication.  My trial was a great success, but fear kept me from taking that last step for two more years.  

Once I decided to have it done, we realized that there was something more serious happening with my back.  It needed to be addressed before the pump could be placed.  After x-rays and MRI’s were done, I had to have spinal surgery to repair the congenital defect they found.  I had a spondylolisthesis and spondylitis.  They performed a lumbar fusion and a laminectomy.   Stabilizing my back was priority one.   After a recovery period, we opted to get the intrathecal pump placed. 

After five successful years, it must seem silly to wait for a new one.  When you’ve endured all that I have, you start to believe that you can’t do things.  That perhaps your self-control is gone.   I’ve taken my choices back.  It’s entirely doctor approved.  My family supports me.  They are my greatest champions and advisers.  The pump can be replaced at any time.  But these moments are mine to experience.  Any successes or failures lie with me.  And I’m ok with that.  It is liberating. Exhausting, uncomfortable and liberating.  

I march forward, new plans in hand! Well, in hands, spine, legs – you get it.  

Please leave me comments about your experiences.  Until next time……..

Peace and painlessness

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