In my last post, which I appreciate you all allowing me to share my excitement with you, I promised that I would catch you all up on everything that has been going on around here. This last year has certainly had its fair share of challenges. It’s had its high points, I suppose, but the challenges were difficult to overcome.
Last July, I had surgery to fuse my foot/ankle, remove an offending nerve, and take a look at the integrity of a tendon. The surgery appeared to go well, but recovery… Well, not so much. I was in a lot more pain than I had been with the other two surgeries, and when I had to have my casts removed/reapplied, it was awful. Nauseating and shiver-inducing kinds of awful.Of course, that’s not normal.
In September, when I began physical therapy, we knew something wasn’t right. It was incredibly sensitive to pain—hypersensitive to the point that even my bed sheet touching it at night made me nearly want to vomit. And then it started changing colors. First to a darker pink than my other foot, then it became darker and darker, until it was nearly plum purple. My doctor agreed something was very wrong, and suspected CRPS (Chronic Regional Pain Syndrome—formerly referred to as RSD or Reflex Sympathy Disorder). He sent me to a specialist in CRPS who was able to see me the next day. This was in October.
This doctor took my history and then took one look at my foot and said, “There’s no doubt about it. You have CRPS. There’s no cure, very few treatments that consistently work, and can spread to other parts of your body. I want you to go to a surgery center right now so we can try a spinal injection. I’ll meet you over there.” And that was pretty much it. I had zero time to process, no time to take any of it in, and suddenly where I was supposed to just have a regular doctor’s appointment and head back to work, I was now being directed to a surgery center. O.O I picked my husband up from work and off we went.
I won’t bore you with the details, but suffice to say my veins and IVs have a hate-hate relationship. The spinal didn’t help, but the doctor told me that it could take up to 4 injections to notice any changes, so we scheduled 5 more. By the fourth one, my poor arms and hands were bruised and literally bloody thanks to multpile IV tries. Even their “vessel specialist” (who is the one they go to for all the “hard sticks”) tried several times unsuccessfully. That last injection really screwed me up as the anesthetic never really was administered (the IV wasn’t secure) and I felt him when he first went into my spine with the needle, and I jumped, shoving the needle deep into a nerve cluster. I couldn’t walk for a few days and had horrible spasming. OMG It was awful. The only other thing my doctor could offer me was a spinal implant, or more specifically, a DRG (Dorsal Root Ganglion) implant. But thanks to my metal allergies, it appeared I wasn’t a candidate. I still went through all of the psych evals necessary to get insurance approval and such, just in case they found a way around the metal issues, but it was ultimately a no-go. I decided to pursue a second opinion.
Unfortunately, the second opinion doc pretty much concurred with the first, with two exceptions: she could offer me ketamine infusions (a rather long and grueling process) or I could try an over the counter supplement that she’d had some success with in her practice. The supplement was called Alpha Lipoic Acid (ALA) which is a really enhanced anti-oxidant. As it appeared most insurance companies won’t cover ketamine infusions (it’s a lot of rigamarole and hoops to jump through to even get them to consider covering it), I decided to try the ALA.
Thankfully, I’d found that keeping a mild compression on my foot/ankle helped. Meaning, an ace bandage, a custom brace, and even my walking boot tightened up. They allowed me to stay mobile. Sure, it hurt like hell to put those things on and take them off, but I did it. And I’m glad I did, because it’s allowed me to stay mobile. I tried the ALA and didn’t notice much difference—until I ran out and suddenly my foot was all afire again. That’s when I realized it helped more than I realized. Went back to the doctor and asked how much I could take at one time (triple my current dose), and my doctor looked me in the eye and told me, “This is your life now. You need to accept that your foot won’t get better than this, and will likely get worse. You may have periods of brief remission, but this is your life now.” Then he handed me paperwork for Permanent Disability parking, and sent me on my way.
Well, I *don’t* accept that. So, I went home and started the highest dose of ALA allowed. And I feel good! Discoloration is all but gone, hypersensitivity is way down, and I’m even considering going back to PT to see if I can get some strength back. Sure, I still can’t stand for long periods of time. I can’t walk far distances without the pain shooting back. I can’t get my foot into a regular shoe (I’m either in a walking boot or surgical shoe, depending how the foot is feeling any given day). But I’m mobile. I’m living my life. The pain isn’t the forefront of my life anymore. And for that, I am incredibly grateful. I have a friend who also has this condition, though hers is much worse, and much farther advanced than mine. The majority of treatment options have failed for her. I know she’s undergoing a spinal implant trial soon, so I really hope it works for her. She’s been in far too much pain for far, far too long. She’s been an immeasurable source of strength for me as I’ve gone through my own journey. I only hope I can repay that to her ten-fold.
At any rate, things didn’t start to really calm down with my foot until mid-January or so… A good half-way point. So I will leave this ridiculously long blog post here and pick up the rest of the story later. Thanks for reading, if you made it this far.