Frustrated that I am still in a lot of pain. I’m having weird pain that started after my infusions. I feel like we are going backwards a bit as it’s becoming hard to put a shoe on my left foot again.
The doctor made a note in my chart that if I didn’t respond to the infusions that the next step would be the Peripheral Nerve Stimulator to my left Sciatic Nerve.
So, now I will have a Spinal Cord Stimulator and a Peripheral Nerve Stimulator? haha Are you sure there is enough room in my body for all of this stuff? ;)
I’m going to take a little vacation as November holds lots of new surgeries. I just want to clear my head before going back into surgery. :)
The only thing that is eating at me is that I am tired all the time and it’s really hard to wake up. Is anyone else going through this? Even with some tea or a cup of coffee, I still feel like I’m in a zombie state.
I never updated about what happened in Lubbock during my surgery! My apologies.
The first few days were a roller coaster. My pain level would range from a 8-6 out of 10. Actually, the first day, they completely numbed my whole left leg and foot, where my RSD/CRPS is the worst. So, that was amazing as I had zero pain!
By the fifth day, something went horribly wrong, I couldn’t sit and my back felt like it was on fire. Not the same RSD/CRPS fire pain but it was defiantly a burning pain. I called the nurse in and she freaked out when she saw my back. She decried it to me as a horrible rash and called the doctor right away. They immediately stopped the infusions and removed the catheter that was in back.
They started me on antibiotics and informed me that I had a Staph infection. So, for the next three days, I was on heavy IV antibiotics. It was insane! I couldn’t eat and just wanted to throw up.
Thank goodness, the Staph infection didn’t spread and I was able to fly home as scheduled. The only bad news was that since they had to cut the infusions short, I didn’t get the results they were expediting. My pain level before I went in was a 9 or 10/10. Right now it is hovering around a 7 or 8/10. So, that is better than nothing. They also gave me these nifty patches made by Synera to help get my muscle spasms under control.
On a super positive note, the Medtroics Rep in Lobbock was able to get my Spinal Cord Stimulator to cover my RSD/CRPS whole leg/foot! So that is wonderful! :)
I have been distracting my mind by engrossing myself in photography and editing until my eyes hurt. Which has been helping!! :))
I also started writing again, which is such an amazing release. :)) I was up until 4am last night just developing my characters. (hence why the title of this post is Zombie as I feel like one right now…)
Anyway, so Dr. Racz was disappointed about the results but said, “you need to get better soon as I am the only one who can fix you.” I guess he can say that as he is the expert in his field and he is 75 years old! haha He also said that I was the most difficult case he has had in a while. This caused major eye rolling. So, in October Dr. Racz wants me to go back to Lubbock for more surgery. They want to do an SCS Revision (move the battery pack to the other side of my back), Sympathetic Never Block (and maybe burn some nerves…fun,fun), Botox to my left foot contracted muscles, and a Peripheral Nerve Stimulator to my left sciatic nerve.
I think the most encouraging thing that Dr. Racz said to me was “If you are running and your guts are falling out, you have to pick up your guts and keep running.”
RSD/CRPS will not defeat me! NO WAY! :)
Today I did a shoot and not only was I the photographer but also the model. It was so much fun!!
I think the reason I had so much fun is because I had Skype on and two awesome friends helping me through the shoot. Don’t get me wrong, when I am just the photographer, I normally don’t need any assistance unless it’s just a group of us shooting together but being the model is a whole different story!
So, first Nastya was on Skype with me and she helped me pick out my outfit and made sure my makeup was photo ready. Then, we did some test shots and she had me laughing the whole time. I really love her to death! I can’t wait until I get to go back to Russia again as she is going to do a few photo shoots with me and she will be the model. She is an excellent model!! Since we are best friends, I feel like we will be laughing through the whole shoot.
Then, Steven got on Skype with me and gave me one of the best compliments. It was about how I get when I am shooting. :) He is going to edit a few of the pictures from the shoot. I’m really interested to see his perspective! He is a really talented photographer. :)
I have been told more than once that I kinda go into my own little world when I am taking photos. I love it!!
Now, I’m trying to edit the pictures from our shoot today and Girl Talk just came into my ears…
I wish I had a video of me dancing while editing…you wouldn’t be able to contain your laughter.
It’s kinda like this: http://youtu.be/vq9ecOPbD1U
At least my pain level is down (7/10)! :) New game plan, I will beat RSD/CRPS with photography! ;)
I’m super happy!!
I never understood the power of RSD/CRPS until I lost the use of my legs last week. It was a horrifying experience. I was sitting on the sofa and tired to get up to do something and my legs wouldn’t work. It wasn’t that they were asleep, it was as if I couldn’t put any weight on them. This continued until the next day when I was able to at least limp around the house.
I decided that since nothing is helping with my pain, that the Racz Procedure or “pain vacation” with Dr. Racz might just be what I have been looking for to help with pain relief. I scheduled my surgery and booked my flight and am leaving today for Lubbock. I will go into surgery on Sept. 11 and will be in the hospital until Sept. 17th. I’m very nervous but am looking forward to positive results!
Will keep you updated. :))