Hey hey hey!
So today I wanted to talk about my life post-ketamine infusion. Its been a hell of a ride thus far, both hard and amazing. I know I touched a bit on it in a previous post but wanted to get a bit more in depth.
I was discharged after 6 days.
I begged them to let me stay another day but they had other patients who needed the bed. My discharge day I was feeling “ok”, pain was around 6.5. I was nervous about getting unhooked but happy to go home and excited about the relief that would hopefully continue. After unpacking and freaking out about an invasion of ants in our bedroom I decided to take a nap and did so for 2 hours.
When I woke up my pain was through the roof.
It was AWFUL. Like my leg bones were being broken while being attached to a TENS unit on the highest setting and also feeling like your feet do when you put them under hot water after being out in the snow. Thats how my CRPS usually feels. It was truly upsetting for many reasons.
A) It was SUPER high, like 9.5 high and horrible feeling
B) Because I had been staying at lower numbers in the hospital, this pain was shocking, even though I have certainly been in this kind of pain before
C) It was tremendously disappointing. I immediately felt like the ketamine had not worked and that nothing would ever work and that I was truly never going to get better.
I posted about it in a ketamine for crps group I belong to and gosh I am SO glad I did. MANY people responded that they had had flareup/ rebound pain too after being discharged and many also said that it took a few infusions to really start feeling better. I cannot begin to tell you how grateful I am to have people tell me to not give up on ketamine and also to be patient. It was very much needed information.
During the next week I felt very much as I did before the infusion.
In lots of pain, unable to tolerate wearing shoes, most of my pants or going outside the house. I tried to stay positive as much as I could and stayed committed to doing what PT stuff I could tolerate doing. Towards the end of the week I started notice my pain was getting lower at times but was unsure if this was because my pain dr had upped my morphine to help me with the flare up. I lowered the morphine to see…
The following week something AMAZING happened.
I went to an appointment and when I came home went to pee (TMI? Sorry bout it). I looked down at my foot and it wasn’t red or swollen! My foot and leg are red/purple and swollen anytime I am not laying down. I also realized that it wasn’t hurting that much. Me being me I frantically got finished and then started yelling for Sean.
In our kitchen I walked for him with the ability to put my foot flat on the ground. My foot was a little pink but not its usual SWOLLEN HUGE PURPLE.
I couldn’t believe it.
I lay down in bed and tried bending my toes and I could!!!! No spasming!
I immediately called my parents and texted my two best friends. I couldn’t wait to share the news that though the ketamine took a bit to kick in that I was FINALLLLLLLY seeing positive changes in my pain. I of course immediately got flared up from all of this activity and had to lay down but it was WORTH IT!!!
This video is a really special one taken two and a half weeks after the ketamine. This is the best I have walked since last June.
Now I am by no means “cured” and I have a LONG way to go.
My pain is still up and down.
I am writing this from bed because I am have had over a week of AWFUL pain days. Before this rough spot I was still hitting high numbers BUT found that there were breaks from the pain too. I even had a few rare moments where I was able to be at a 2.
I couldn’t tell you when I was last in such little pain.
Before this recent flare up I was still using my wheelchair at least 90% of the day but when my pain was down I was able to practice walking with more of my weight on my left foot. A few times I could walk like I am in the video with my left foot flat on the ground, sometimes I walked more on the outside of my foot but mostly I still walk on my heel which looks dumb but its all I got. Walking normally is going to take time both with PT and probably more infusions.
Those moments of relief have made my high pain moments more tolerable at times and then also harder.
It has “reminded”me how strong I am, something I often doubt. When I am in those high levels of pain I remember that these are the levels I have been functioning at for a long time. I marvel at that now. I have survived 1650+ days in pain most people couldn’t comprehend and I haven’t killed myself.
I am stronger than I give myself credit for.
My whole life I have doubted myself and talked down to myself but in being sick, I have seen new sides to Genevieve. I have spent over 4.5 years in often very severe pain. Pain higher than amputation or child birth. I have experienced multiple types of pain at once and I have kept going as best I can. I have pushed to work until I physically couldn’t and have done everything I could to help the illnesses I have been stuck with be it drive many miles to different drs, eating strict diets, taking terrible tasting tinctures, and treatments that made me feel worse. 2015 led to my illnesses reaching new limits and 2016 so far has been hard but Im still here. I haven’t jumped off any roofs or rolled my wheelchair into traffic.
Some days it is hard to be in A LOT of pain after having small tastes of relief. I find myself willing and begging my body to go back to two weeks ago. So far it hasn’t worked.
I start PT next week.
I am a little scared to be honest. I have done PT for my CRPS a few times now with an amazing competent PT (who actually first figured out my CRPS before any dr ever did). Unfortunately because of me also having Lyme Disease and Ehlers Danlos Syndrome things were complicated. I was “fired” from PT one time due to how severe my Lyme Disease was and though later on when I restarted, I could make small improvements but the pain always stayed the same. (This was before my CRPS got so severe)
I know part of my PT means pushing myself and I also know that part of PT will be taking my body past its limits to where I will most likely be flared up. That is scary to me but I know in my heart that I will never be able to walk normally if I don’t do this. More pain won’t kill me.
So I’m doing it and whatever happens, happens. Hoping to get my next ketamine infusion scheduled for June!
I can’t wait. More relief is waiting in the wings of the hope in my heart.