Medication is My Frenemy

Once again, I feel like I've hit a roadblock with my treatment.  I'd be lying if I said I didn't feel defeated right now.

In case you are reading this and don't know the backstory, about a month ago now, I found out that the tacrolimus side effects were becoming too strong.  I went off for a few days and started having skin and stomach issues, so I then resumed a lower dose to see if things would even out, to see if I could get the benefits without the overwhelming side effects.  At first I was handling it ok.  Then in the last few days, the weakness side effect started becoming overwhelming again.  My legs started to feel shaky and I felt faint and dizzy all the time.  I started struggling with the abilities I had just discovered I could do again.

The reason I say "medication is my frenemy" is simple.  When I look back at how I was doing at this time last year, I was in pretty pitiful shape.  I had to have help for just about everything, and my mom said I felt pretty much like dead weight when she'd help me out of chairs and stuff.  I had a lung function test and found my lungs were weaker than normal, and I wasn't even surprised since I felt short of breath all the time.  My heart was racing quite often and my chest hurt, and the echocardigram showed inflammation of my heart.  I could tell this was not just affecting my muscle strength anymore, but my organs.  I felt terrible and pretty much helpless.

Now, after a year of tacrolimus, I have regained some strength back.  (Strength I didn't realize I had gained back until I was off the medication.)  I still have so many abilities I can't do and I am still working on, but I'm actually doing some things I couldn't do a year ago.  Even something as simple as opening the refrigerator door is a big deal for me right now!  My lungs feel a good bit stronger and it's been a long time since I had a heart racing episode.  So it has done a lot of good.

The problem lies that while I'm on the medication, I can't feel the good it's doing.  The fatigue and weakness become so overwhelming I don't even feel like myself.  The problem is, without it I could lose the progress I have made, and I definitely do not want to return to the place I was a year ago.

Without the medication, things could get dangerous again.  With it, I'm exhausted and feel like I'm losing my mind.  Both my friend and my enemy.  Ugh.

So here I am, dealing with my frenemy.  My weakness from the disease is better; but the weakness from the medication is just counteracting that.  I really had no idea I had gained strength back until I was off the medication.  Then I started to do things I couldn't do previously.  More so, I felt like me again.

So here I am again, not sure which direction to turn from here.  I am praying for peace and strength and wisdom right now.