Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

“I can bear any pain as long as it has meaning.” ~Murakami

Written by Katie. Posted in Ehlers-Danlos Appointments, Prolotherapy

I had prolotherapy again on Wednesday.  This was intentional scheduling on my part.  I knew when I finished gymnastics camp, I would be one hurting zebra, so I figured having shots right after camp ended would be a good way to tune everything up, and help relieve some of the pain.

It was a very early morning complete with a few choice words when the alarm went off. 

By the time I downed a huge cup of coffee I was in a much better mood and was ready for the road. We did our usual “fill up the gas tank, and get Subway stop,” and then it was on to the office.  As I talked with Dr. Cantieri about my recent neck pain, he explained that he still believed I could actually be experiencing more nerve pain than ligament and tendon pain at this point.  He checked out how I stood and pointed out how I hold my left shoulder a lot higher than my right.  I reminded him of everything that happened with my arm years ago, having the median nerve accidentally removed.  I explained that I hold my arm like that to protect it because of the shocks and tingles I still get from the median nerve stump in my elbow (where it was cut).

Well, I did not see this coming but he asked if we could feel around my arm for painful areas. I did not have to say much.  I think the look on my face did all the talking.  Everyone close to me knows that no one comes near that arm.

No one.

Not even me.

Dr. Cantieri promised he would be gentle, reminded me he would stop at any time, and that I was still in control…so, I closed my eyes, held my arm out, and tried my hardest to go to my happy place…the beach.

As we was feeling around, and as I was jumping off of the table, it hit me that he was thinking about putting shots into my scars.  I sat up and asked him point blank what his plan was.  He told me he thought the nerve injections could really help desensitize the nerves and bring down the swelling.  Because I have a lot of scar tissue in that arm, he was sure I had a lot of nerve entrapment making the pain worse.  It took me about a minute to come to my senses and remember what I always tell myself when I feel that kind of fear: “Do it afraid.”

I laid back down, held out my left arm and told Dr. Cantieri I would try it if he believed it would help.

At that moment, I really felt a level of respect for Dr. Cantieri for being the pain detective he was, for thinking outside of the box, and for sharing the belief that everything is connected in our bodies.  Because of years of arm/nerve pain, my arm issues most likely WERE playing a part in my upper back and neck pain. As he was giving me shots, he said to me, “You know, Katie, one thing we have in common is that we are both pitbulls when it comes to wanting to get to the bottom of something.”

I took that as a compliment.

After I survived the arm injections, it was on to the normal prolotherapy injections in my neck and first rib. It was during this time that I had a weird kind of meltdown.  I think I hit a wall and was so over tired and sore.  Don’t get me wrong, I think meltdowns are completely normal once in a while; especially when dealing with chronic illness on a daily basis, but what was weird was that this one came out of no where.  With tears in my eyes, I started to doubt my treatments and if I was reaching the end/plateauing with prolo.  I explained that everything I read said that with so many visits of prolo, you should not need it anymore.  Nothing I read said anything about coming for 2.5 years and counting.

Well, I got the needed talk to a) stop reading the Internet so much, and b) what I am reading refers to people with injuries; not people with chronic diseases like EDS.  I believe Dr. Cantieri’s exact words were, “When you have EDS, all bets are off.”   I think I needed that reminder and the perspective that when I first came, I was basically getting my whole torso injected; pelvis, ribs, SI, thoracic, upper back, neck, and jaw.  Now I am down to upper back, neck, and occasionally the jaw.

I realized in that moment that sometimes it takes someone to stop you in your tracks and point out the progress that has been made. No, I don’t come into the office in a neck brace anymore.  No, I don’t talk about needing a wheelchair anymore.  Yes, I just made it through 4 days of dancing on my feet.

Perspective and progress.  So important.  So necessary when dealing with illness.  So easy to forget.

People living with EDS ARE complicated, and it’s okay to sometimes get tired and reach a limit.  We are all human. What’s not okay is to quit.  Dr. Cantieri that visit got to be part osteopath, part pain detective, part shrink.  Thank goodness for GOOD doctors with patience and hearts.

Sometimes we do get by with a little help from our friends

012

Less points! Progress!

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Breathe!

"He must be crazy."

“He must be crazy.”

"I must be crazy."

“I must be crazy.”

Beach, beach, beach!

Beach, beach, beach!

The normal.

The normal.

Last one.

Last one.

 

 

 

 

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Comments (2)

  • Kelley VanHorn

    |

    Katie, you are amazing, and one tough little cookie! We love you!!!

    Reply

  • Michelle

    |

    Thank you for blogging your journey. It’s a bad today. I inboxed you about how you have connected with these amazing doctors. I’m 35 (well.. 36 today) and my two daughters have EDS as well. My 10 year old wants to dance, but can’t because of pain and so on.. We were all diagnosed 4 years ago. I pray I can find the medical help you have. Your blog and Facebook page has given me strength.

    Reply

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