thankful for the experience

I don’t need to be reminded of what i used to be able to do and can no longer do.  That is not lost on me. Even if this high dose c helps me, don’t wait for me to snap back to my old self. It’s not gonna happen.

I feel like I am a better person having gone through what i have. I’m happier.  People don’t get that (maybe this bitchy post threw them off).  I’m not going to say i don’t ever get upset and want more. But then i remember (very quickly) that things were so terrible and that I had real fears about not ever walking again.  I then feel total relief that i can walk.  I might be lucky as far as RSD patients go because i didn’t have an injury that anyone thought i would recover quickly from. What happened to the nerves that control my ankles was awful.  So i get to feel relief that perhaps others do not.

But i am hoping someday that people close to me (thankfully some already do) will see that i am not a victim and that i am better for having experienced what i have. Stop waiting for the old me to show up.  Old me had stupid priorities. She’s gone.  Say goodbye.

I was humbled by not being able to do much for myself for a while and i haven’t lost that.  To this day, two plus years after going out on my first walk, i am still so happy to put on my shoes and go outside. I hope I never lose that. I wish i could help others see how wonderful that alone is.

I had a feeling today was somehow important in my story

And so I just looked at a timeline i have of how my symptoms came on in early 2009.  On 1/26/2009 I think i showed my first RSD symptoms. I was put on Neurontin 5 days before.

The bone from the graft just overgrew a little around the one year post-fusion mark (we have a CT scan showing that) and then i grew a ton of bone in a short amount of time. Inflammation is what grows the bone graft in a spinal fusion. RSD brings on crazy inflammation levels which would explain how i baked myself so much bone and completely baffled my surgeon.

Here are my notes from 1/26/09:

Morning: Numbness in my legs
Night: Tonight legs went from prickly to full on pain in both legs. At one point there is shooting pain to the pinky toe on my left foot. Pain level at 9-10. Cried. The sheets hurt me when I lay in bed.

Note: i would learn later that agony from the touch of bedsheets is a common complaint with RSD patients.  Mom, before you start crying, i rarely get like that now so calm down. I am stunned that it’s been 4 years.  Not stunned in a bad way. Just stunned because it feels like it was a year ago but also a lifetime ago.

February 2, 2010

I have been in more pain as of late – a lot more. Today it was so bad that I made an SOS to my qi gong healer and he helped me but then he suggested that i needed acupuncture to help with my stagnant blood in my feet and legs. So i underwent two hours of crazy acupuncture and cupping and was crying through it. I literally feel like someone beat me with a shovel. I am told I might feel a lot better tomorrow….I don’t ever feel good but it’s times like this when i feel the need to tell you just how awful the pain is. I have had 3 oxycodones since 6:30…still miserable.

Where I came from

I’ve been reading a lot of twitter posts (I refuse to say it… you know, tw*et) and blogs of other RSD patients and it’s heartbreaking but it made me think of what I used to be like…i’ve been looking at old emails…

10/20/09

Today i told my acupuncturist that when i am well i want to go to my pain drs and yell “suck it!” He said he would love to come and watch. 🙂 He is the reason I am going to get well.

11/16/09

I just had an EMG. I cannot describe to you the pain i am in and the barbaric test that I clearly blocked out from March. I had the electric  currents and then the large needles in my muscles with electric currents.

I do not have full report yet but he did show me most of the results and told me i have nerve damage in several areas, mostly in my foot and ankles. The good news in the totally abnormal, shitty test is that i appear to be on the moderate end of damage rather than high. He said that he thinks there are some therapies he can recommend in order to help the pain in my feet. He also said that one of the readings shows that there is healing going on at L5S1. I guess L 5 is worse and the left side is worse than the right. He had to do more calculations before i get my full report but he gave me that much so i was not just wondering.

The pain is unreal and i want to jump out the window. I will probably not jump out. I left there in tears.

Note: I learned later that doctors do not traditionally put RSD patients through EMGs because it’s considered inhumane. Inhumane indeed. I went about 10 days in bed, under the covers, feeling as though i was being constantly electrocuted before someone took me seriously and gave me bilateral nerve blocks to stop it.