Month: May 2018

My decision to have surgery had been made.  Although, I really wasn’t planning on having it within 24 hours! Funny thing is, I’ve known that about plans all my life. They change. All the time. Not sure why I was so shocked about it this time. I spent the night before surgery physically and mentally preparing. Leaning on God for strength and praying for wisdom and accuracy of the doctor. Thankfully, God blessed me with strength that morning because it ended up being a morning of confusion and doubt.

By the time we left for surgery, my emotions had taken over. I was scared. I was nervous. I was afraid. And, quite frankly, I was angry because I was still dealing with this after almost 2 years! When would I ever be able to say I don’t hurt? Maybe this surgery was just what I needed to get rid of the pain and be myself again? After checking in, the prepping process began. At that very moment, the confusion and doubt started setting in. The doctor and staff were confused, and I had serious doubt on my part.

Thankfully, God gave me an amazing nurse to help me through the confusion. (Thank you, Jesus!) Her name was Stephanie. Such an awesome name. The doctor’s notes said he was operating on my left calf to remove a nerve. (Ummm…I don’t think so!) His note also DID NOT mention any of my topical allergies. I’m allergic to every antiseptic there is. EVERY ONE OF THEM! The nurse wiped my wrist down and inserted the IV before I knew she didn’t have my allergy list. When I smelled the alcohol, I immediately asked her if she had my medical history. Apparently, she had what the doctor gave her. Lucky me, it didn’t have any correct information. (Sense the sarcasm?) As far as I’m concerned, nurses do not get the credit or money they deserve. Without this special lady, I would have had surgery on my calf and would have had a rash over my entire leg! She even knew what CRPS was! Score!

Doubt started filling my mind. Why wouldn’t it? I mean, seriously, if the plastic surgeon was going to cut me open in the wrong spot, I would prefer him to do it somewhere else!  HA. This incredible nurse brought in the doctor, the anesthesiologist, their entire surgery team, and some sort of office manager. While in the small (I was feeling really claustrophobic!) curtained room, she sternly went over my allergies with ALL of them. She placed Post it Notes all over my body and my charts. She had the doctor look over the note about surgery of my calf and got clarification. He said something like, “Oops, I meant the ankle. I just saw her yesterday.” My doubt was increasing. Maybe I wasn’t supposed to be having this surgery so quickly.

I started feeling a sense of relief when the doctor put his initials on my ankle, and the team developed a plan for me. (I guess they call me high maintenance for a reason!!) As I was being wheeled off to the surgery room, there was still a little bit of doubt in my mind. Was the medical staff going to be confused about my situation? Was the surgery and recovery going to go as planned? The next thing I knew, I was being put under for the surgery to begin. I know I don’t remember anything during the surgery, but at least I wasn’t hurting or doubting anymore. However, when I woke up, I was once again reminded about plans and how they change. All the time. Now I was the one confused. And it wasn’t because of the anesthetic! (Well, maybe just a little bit.)

Someone once said to me, “Don’t let your emotions make your decisions.”  At the time, that saying made perfect sense to me.  If I was scared or afraid of something, I realized that fear shouldn’t necessarily hold me back from taking a chance or making a decision. During the two years leading up to now, I had only been able to make a few decisions about my care.  Nonetheless, each decision took a lot of thought and research. It was my health and well-being I was deciding about, after all.  That meant I needed to be certain and confident of what I was deciding. Unfortunately, these last few years have been an emotional roller coaster for me. Because of that, I was very meticulous about these decisions.

Once the new doctor told us he could remove the nerve neuroma with no problems, I had to decide if I wanted to have the surgery done.  Supposedly, this surgery wouldn’t be as invasive as my tendon repair surgery.  In fact, the doctor said he wouldn’t need to cut into much of my old incision and that I would probably be walking out of surgery wearing a boot. (Now that’s my kind of surgery!)  Everything he said sounded great.  I still had A LOT of concern about him cutting into my CRPS foot/ankle as any surgery could cause the pain to spread to other parts of my body.  That frightened me.  But…he was very confident it would be a simple surgery and easy recovery.

Steve and I agreed that going ahead with the surgery was what I needed to do.  Although my emotions were telling me no, (because I was scared and nervous) we felt it would be best for me to try it.  Immediately after meeting with the doctor, we met with the surgery coordinator.  Here’s where the next lemon comes into play.  She was getting off the phone as we walked into her office.  After sitting down, she explained to us the person on the phone was calling to cancel his surgery for the next day.  She asked if I wanted that appointment and said the next available opening was in two and a half weeks.  HOLY COW! That’s quick.  How could I make a decision like this that fast?  My heart started racing, the burning in my foot started spreading up my leg, and my palms started sweating.  My emotions were telling me no, don’t do it.  That’s too fast.  My mind and Steve were telling me just get it over with.

Steve looked at me, we talked, and then we told her I’d take it.  WHAT?? When I agreed to the surgery, I thought I’d have at least a few days to process the decision and mentally prepare.  With hesitation, I agreed to take the opening as I realized nothing had ever gotten approved that fast. NOTHING! There was no way surgery would happen tomorrow.  No way! There were only 1½ hours left in the working day, and it had to be approved by the day’s end.  (I actually laughed quietly to myself and started to relax a bit.) We left the office and headed home.

Within 15 minutes of us leaving the office, I received a phone call.  Did you read that???  15 minutes.  The surgery had been approved, and I was scheduled to go in the next day at 9:30 am.  Once again, I was speechless.  SHOCKED, really.  How could I be mentally ready for this?  My emotions were saying no, no, no.  I kept telling myself to relax, just relax.  Breath in, breath out. It took the entire car ride home from Kansas for me to accept that this was really happening.  Once home, I was able to start processing the fact I was going to have another surgery.  Surgery in less than 24 hours.

Ultimately, I guess it was good I didn’t let my emotions make the decision.  I knew if I didn’t at least try this, I would always be questioning the choice I made.  However, after surgery, I didn’t feel the same way.  It’s sad how those of you reading my blog could probably figure out things didn’t go as planned.  Nothing could be that easy, right?

April 2018

After graduating from The Lemon Center (TLC), I was excited to put what I learned into practice.  Although I still had pain, I had faith what I learned at TLC would help me manage it, and I was proud of the hard work I did while there. The next several weeks would give me a chance to practice what Dr. Lemons had preached.  “Pace and space. Be still and know you’ll still be and relax.” My plan was to continue with those practices as well as the physical therapy I learned.  I had a plan. (You know I LOVE plans!)

While attending TLC, I continued to see my referring doctor. After a few more nerve blocks, he decided he wanted to do a diagnostic test on my ankle. He thought I might possibly have a nerve neuroma which could be contributing to my pain, so he wanted to rule that out before releasing me from his care. Frankly, I had no idea of what a nerve neuroma was. Come to find out, it’s a growth of nerve tissue that causes pain. Of course I knew I had pain; however, I didn’t know if a nerve neuroma was contributing to it.  After researching more about it on Dr. Google, I found that these can sometimes be present in CRPS patients.

The doctor’s diagnostic test consisted of numbing my ankle with several injections of lidocaine.  If I didn’t have pain after the injections, that would indicate I actually had a neuroma.  He would then send me to another doctor to have it removed which could very well help my pain.  Or even better, get rid of it all together.  Listen closely to this…  After the injections, I was pain-free for close to 6 hours.  Did you hear that?  PAIN FREE, people!  I wanted to run around the block, clean the house, and scream with excitement at the top of my lungs.  While I didn’t do any of those things, I felt another sense of hope about my situation.  Maybe this excruciating pain of mine would go away. Soon. Maybe???

The doctor was excited to find out that his assumption was correct.  Or at least that’s what he thought.  I was referred to another surgeon for a consultation.  (My 7^th doctor, by the way, but who’s counting?) To say I was excited about this possibility was a bit of an understatement.  To say I dreaded the appointment, is the honest truth.  Another doctor.  Another appointment.  Another telling of my story.  Another explanation of my illness.  Another, another, another…  Although I was incredibly optimistic about this new information, I was also thinking to myself, “Here we go again.” Chronic pain does that to you.  Having a rare disorder does that to you.  Going to doctors who have never heard of CRPS does that to you.  These things cause you take something that may be a positive and turn it into something negative. Trust me on this.  I know from experience.  You know my story.  There have been a lot of ups and downs and turn arounds.

But… (We all know there’s always a BUT with one T!) This time I was equipped with the tools I needed to get through the days leading up to the appointment as well as to get through the appointment.  What I had learned at TLC prepared me for these things and helped me manage my pain and nervousness. The day of the appointment came and the doctor said he could surgically remove the neuroma.  Great news!  Then BABAM, there came another lemon! I had a decision to make, a quick one. Maybe, just maybe this was the lemon I needed to feel better.  Maybe?!?