So here’s a super long blog to make up for my absence.
First I went out to Colorado September 30th-October 6th with my best friend which hard on my body and I unfortunately spent much of my time laying in bed and not doing much exploring. It was really great to go on a trip, I haven’t gone on a trip in a few years except all my trips to NYC last year to see this one neurologist. I will be writing a blog about “Traveling in Wheelchair” soon since I had GREAT and TERRIBLE experiences on our trip.
Once I got home from Colorado, I used the next few days to rest and try to get my body settled since I ended up throwing up A LOT during our trip along with an increase in pain.
My last infusion was an the begining of June and had definitely begun to “wear” off by September (though I do want to say that I haven’t gone backwards in terms of how really severe my CRPS before starting ketamine).
The first two infusions Ive done this year give me some relief for the days I am hooked up to the machine, usually the relief is up and down but I have been able to get down to a 2 for a few hours etc. I then have a “flare up” for a few weeks after discharge and then…the magic starts.
Since starting ketamine infusions, I have been able to go from taking pain meds 2-3 a day to usually only once AND have been able to tolerate doing aggressive PT to relearn how to walk. My leg and feet look less purple and swollen. I have finally been cleared to drive a car again. I can shave my legs (usually have to take pain meds to do so) and am slowly trying to get my lower body used to wearing more shoes and tighter paints.
When I say ketamine has truly been a game charger for me, I mean it.
So I went into this infusion hoping for some relief at the hospital and more relief later on.
Then something magical and unexpected happened.
What I didn’t expect with this infusion was for my pain to go WAY WAY down…and then hold.
The pain first went down to a 3/4 by bedtime on Oct 12th since it took me a bit to get to the right dosage of ketamine due to how easily ketamine can make me nauseous. By the morning of October 13th my pain was at a 0/1.
From Wednesday morning to Sunday morning I was at a zero or a one.
I also had no headaches, no joint pain, and no muscular pain in my quads which I also deal with constantly.
It was the VERY first time I have felt normal in years.
I cannot begin to explain what this felt like or how much it meant to me.
At UVA they have you do PT with the ketamine to keep trying to break that feedback loop that is why CRPS happens (read more here) So October 14th my PT came to get me and I decided I wanted to walk without a walker…and I did. This was a HUGE deal.
I know I sound completely nuts (I cant stop laughing at me yelling “I AM WALKING” but I was on drugs so I get an excuse and anyone who knows me well knows Im really goofy even when sober).
It was amazing.
I haven’t walked normally since February 4th 2015 and while my walking has improved in the pool, I do not walk normally on land and I am pretty much always have to use a walker to steady myself when I try walking normally.
So for the next few days I did EVERYTHING I wanted (well not everything…if I had had it my way I would’ve left the hospital somehow hooked up to the ketamine and go out to coffee with my family and friends and then go bump some uglies with my husband)
I took a shower standing up, I walked all over the 3rd floor of the hospital with no walker a few days in a row, I did sun salutations morning and night. I even MASSAGED my foot and leg which hasn’t happened in I don’t even know how long. I did all my PT exercises twice a day, stretched my poor constricted leg muscles in my left leg and foot, and threw in some squats too.
I was on an amazing mind-blowing high, about as close as I have ever had to a spiritual experience and it wasn’t because I was on a ton of drugs.
It was because my dream to feel better if only for a little bit finally came true.
I cried a lot (all tears of joy).
I left blubbering messages for my main pain dr and also called my PT crying to tell her the news. Friday night I had a private dance party in my room where I danced to all the songs that I have listened to when being sick felt too much to bear. It was pretty intense to look back on how I was thinking of killing myself last year because the pain just felt too much to bear and then to be here..finally getting a break from my 24/7 chronic pain (AND to have my Lyme Disease in remission!)
I just sat on my bed one night and cried and cried and cried and thanked the universe over and over.
My nurse came in at one point worried because my crying was fairly loud and I just laughed and said “Oh no I am so happy now, these are the happiest tears I have ever cried”. I truly didn’t even remember what it feels like to have nothing hurt in my body, its just been too long.
UVA was so thrilled with how low my pain was that they let me stay for almost a week which is not usually how they do things.
I did have some side effects from the ketamine but nothing too rough.
I had a horrible time sleeping my entire stay and no matter how much Ativan and sleeping meds they gave me, my body just didn’t want to sleep much. I didn’t have much nausea except for two nights, thankfully I only had one episode of vomiting because I tried eating some delicious Macaroni and Cheese that was far too rich for my stomach. I have some stomach pain from the infusion (?)but Im pretty sure that will go away if I just take it easy on my stomach.
I was able to have some visitors come and make the hospital stay even more awesome. One of my dearest friends Lila drove an hour to be with me, we wanted to take some photos of me getting the infusion but I was SUPER high that night and instead demanded that Lila lay in bed with me. I do remember elling her that I now knew the meaning of life while I buried my face in her shoulder because I was super dizzy (this is when I ended up puking).
Lila’s the best so she patiently listen to my ramblings and helped me stay grounded.
It was my dog Roxy’s 12th birthday on Saturday so Sean sweetly brought her in to see me. I of course cried and tried to think of a way so she could stay with me the rest of my stay. It was so cute to see her worried little face and then watch it change once she realized that it was me and she wasn’t being taken to the vet to “be tortured”.
Sadly my pain began to creep up towards the end of my stay. I’m not sure if I overdid it with all the physical stuff I was doing or if my nervous system just didn’t know how to stay outside the CRPS feedback loop.
I won’t lie and say that it wasn’t disappointing because who wants to go back to being in miserable pain 24/7 and back into a wheelchair?
That being said, every day of my infusion I prepared myself for this possibility. I have had way too many treatments break my heart when they didn’t work and I didn’t want to lose sight of what happened that week (I will be doing a blog on this topic hopefully soon).
Every day I just told myself over and over and over that if I leave the hospital in a wheelchair it doesn’t mean I will always be in the wheelchair.
I was really pleased that I was able to spend quite a bit of time talking with several pain drs during their rotations. I will admit to pressing them several times that UVA has a chance as a well respected hospital to make sure the drs they have in training learn how to recognize CRPS early so people don’t end up like me because my CRPS wasn’t properly diagnosed for several years.
There’s several really smart and kind drs who are currently doing their fellowship at the UVA pain clinic which really excites me.
Pain management is a hard specialty, you are dealing with a population of patients who feel like shit, have been let down by the medical community and even have had their validity of their pain questioned. While there are some people there JUST for opiates, most of us are just DESPERATE for relief at any cost. The several fellows that came to see me seemed open to what I was suggesting and also seem to really understand CRPS which is hard because its a really weird illness thats incredibly hard to treat.
I also made sure to just repeatedly thank each of them for choosing the very hard job of helping people who are in intense unrelenting pain.
There was one fellow in particular that I really bonded with as she is a runner. As I told her my story about going from being a runner to being disabled, her eyes teared up because she understood how hard that was for me. Her compassion was really evident and I told her that I thought she was going to be a tremendous pain dr and that her patients will truly benefit from how pure her intentions are to make people feel better. She even gave me her cell phone so she could share the video of me walking with some of the other drs.
We even had a special moment one day where we both agreed that the universe wanted us to meet.
There was also some discussion of me considering a new treatment that is showing a lot of promise for CRPS. Its called a Dorsal Root Ganglion Stimulator. I was told that because my CRPS is mainly on my left side I would be a great candidate for it. I am of course interested to learn more but Im also OK staying with ketamine for now because of what it has already given me. I have some reservations about any surgery involving my spine and am also unsure about how much more pain relief it could give me.
UVA isn’t yet trained on it so I told them that I would be willing to discuss it more later on depending on how the ketamine infusions keep working for me.
So now its a waiting game…
While I did leave the hospital in more pain, the pain has definitely ebbed and flowed since I got home. I woke up this morning in pain but not as much pain as last Tuesday when I was admitted. Sadly the pain is definitely getting more intense as I write this blog.
My other goal during the infusion was to bump down on my my pain meds. I was able to cut my morphine from 60 mg to 30mg with barely any withdrawal symptoms! This is something I am trying to continue now that I am home, if I go into a big flare up I may have to bump it up a little.
My game plan is to take the week off PT, see how I do next week and then hit the ground running (so to speak). I really really want out of the wheelchair so I am just going to keep working at relearning to walk and see how it all goes.