Hey kiddos!

I forget I have this blog. 

Then I remember and I wonder… what is on it?

I cringe.

My life has been through so many changes since I started this blog in May 2017. What have I written? I think maybe I should take it down. Then I get distracted. Oh well.

I am writing today to tell you…

I did another series of ketamine infusions and here’s what happened

I did them because my foot blew up with swelling when I started to use it more. 

The back story with my foot is… I had problems in that foot for over 10 years. I would see a podiatrist every now and then. There was never a good surgery solution. Pay attention! I was offered plenty of surgeries. They all just sounded so, well, stupid. If you have EDS, you know what I mean. 

So I just lived with the pain. I don’t do stupid surgeries just for wishing and hoping. I’ve got better things to do with my time, energy, money and healing resources.

I got a lot of physical therapy for my foot. I read books about feet.

I stopped using all orthotics and went to low support shoes. That helped the most and was great for my whole body. My EDS body needs the fullest range of movement possible to reduce pain. Not moving triggers pain phenomena—perhaps it is protective spasming. Perhaps its because I get weaker. Certainly, muscles imbalances (lopsided strength) is a real source of trouble for me.

Then I broke that foot badly. That took a couple surgeries. There were complications. Immobilization and icing make a joint weaker and prevent healing (which I did not know) so my foot got worse because I did both.

My poor foot was finally bad enough to benefit from a standard, normal person reconstruction. I had that in the summer of 2020. Also, because during a pandemic shut down, seemed like a good use of time.

Just my opinion here on surgery…

Doctors love to offer me surgery! However, I do not want your creative surgery you made up for my flimsy hypermobile body. I’m better off not making myself worse, thanks. I don’t need anyone to go cause more joint damage, thanks. Surgery itself is a physical trauma that will increase my pain and drain my physical resources. 

Got it? Just my opinion.

Back to this chapter of the story.

This spring, I was doing a lot of stationary bike and standing while pumping the pedals. Ouch! My foot blew up in pain and swelling. F*ck! F*ck! F*ck!

The pain was frying my brain. It wasn’t settling down. 

I wanted to go see my foot surgeon because he is funny and sexy. But those surgeries were traumatic. I never want to go back there. Anyway, I figured he’d tell me it would just take time to heal, like he always does because it is true.

Instead

I wrote a check to the anesthesiologist who runs the ketamine clinic I have been to. My insurance covers a good portion of my infusions. Amen for that.

Now remember…

I f*cking hate ketamine

How can this be a party drug?

The trips are disorienting and awful.

You slowly lose touch with your senses and your sense of self. It feels like you leave your body and the room. It’s scary. I get nauseous. I can taste the drug. I can smell it on myself for the next 24 hours. It is just G-R-O-S-S.

But, it f*cking works!

How to dose ketamine for pain could use a lot more research. Here is what works for me. 

• I cannot tolerate more than one infusion per week. That is all the life-ruining I have time for. So that’s my dosing schedule. I don’t care what USC Pain is doing or what any other studies say. This is my maximum discomfort. 

• I have had doses from 35 mg to 85 mg. All were strong enough to cause a dissociative experience. I am a very drug sensitive person.

• In general, I avoid drugs that are really toxic for your brain, like propofol. So that means I will stay at a lower dose. Fine. I find EDS is very much a brain disease. I am passionate about the health of my brain.

• For the same reason I want to avoid anticholinergics like benzodiazepines and Zofran. But how? The trips are frightening! I don’t want to barf! Well, let me tell you a story.

I got referred to Dr. Keith Heinzerling at Pacific Neuroscience.

He studies psychedelics and their therapeutic effects. He also does ketamine in his office with therapists to help people with… whatever. It’s all really interesting. Here’s a podcast if you want to hear more.

I found him quite charming. We hung out for like an hour (hey, I am charming, too) and talked about the work that he does.

It gave me a chance to process what had been going on in my ketamine trips, something that was sorely missing. (Anesthesiologists do not have the best talking skills.)

I didn’t even know I need to talk about my ketamine experiences. Ah, relief!

I also liked Dr. Heinzerling because I got to talk about my opioid experience, which no one understands or even wants to hear about. I still have a lot of feelings about it.

So, yeah, talking to him was enormously helpful.

After that…

I took my ketamine straight up, with a side of magnesium.

I embraced the experience.

I no longer got nauseous.

I did not need any anxiety relief from a benzo.

Without the extra drugs, I get over the yuck of the infusion much faster. Yay!

Now I just make Mr. Pennington listen to what happened during my drug trips.

He's a good sport, a professional caregiver at this point. He even spent one infusion holding my hand the whole time because they are f*cking scary! Isn’t that sweet? We are nauseatingly codependent.  

Let me you about my VERY BEST ketamine trip 

I had from that whole series.

I went to see Dr. Niles, my lovely PCP, for some trigger point shots for my sciatica a couple hours before my ketamine. 

(He sees a lot of us local EDSers if you need someone.)

That was just a happy accident of scheduling, not a plan. 

The stimulation from the shots gave my brain had something to chew on.

During the ketamine IV, I felt my whole body thinking about itself, aware of the sensation going from the trigger point shots through my spinal column to my brain, round and round, sorting things out. Pain is so shattering, you know? I often feel like I am in pieces. This was being put back together. It was absolutely wonderful.

After that, I spread my ketamine infusions out even further, so I could get trigger point shots in painful spots on my back before each one. That’s because you don’t do trigger points very often.

Pay attention! I do not get immediate relief from the ketamine.

I am not an immediate relief kind of girl.

Immediate relief is a fantasy with EDS. Unless I want to go back on morphine. I do not.

I have gotten so much healthier by:

• Strengthening collagen (with intramuscular ascorbic acid everyday, which I have done since December 2012).

• Strengthening muscles (cardio! weights! impact! do it all!). Note - before C shots I was hopelessly! exercise! intolerant!

• Turning down the pain feedback mechanisms in my body. Exercise does this well, especially heavy lifting. Also, get yourself some low dose naltrexone. Get off opioids because over time they make you more pain sensitive.

• Catching up on sleep (thank you, vitamin C shots).

• Refusing drugs that burden my brain (anticholingerics). They make me stupid, fatigued and fat.

• Cognitively challenging myself. What is 2 + 2? After all, the brain is in charge of pain and fatigue.

None of these are immediate relief modalities.

No problem, I can do delayed gratification. I have a chronic illness that will never go away. I am always looking for the best management strategy.

I think loooooooooooooong term. 

Let’s see what happens overall, not immediately. Healing takes time, and that’s the truth.

Good news

These days, my neck and head pain is at zero. Why? From all I do and from being stronger than I have ever f*cking been.

I’ve been going to physical therapy tons, getting my ass kicked, strengthening my core from every direction. I am grunting, sweating and working hard in PT. You, too?

Unfortunately, COVID-19 wiped out my local gym. Fortunately, that got me started doing AppleFitness+ workouts. Those are pretty f*cking awesome. Most days I do one HIIT workout and one strength workout. My cardiologist says I can go up to 25 pounds in each hand. Not there yet, but what a nice goal!

On other days I swim or run.

Swimming is really healthy for the brain.

My endcrinologist encourages me to do impact for my bones, like running. I also toss my 8 pound medicine ball in the air and catch it for my arm bone density.

Oh, hey, go to PT just for your hands and wrists. Hand strength equals quality of life. It means I can do things for myself. Skip occupational therapy — there they taught me how to use my hands as little as possible, which made them weaker and worse. That’s the catch-22 of EDS summed up in a micro-vignette.

I don’t take days off exercise. I will exercise lightly if I am very sore because that builds up the muscle fibers. Very valuable!

I have never been this strong or this conditioned. For sure that is a big piece of the pain-free pie.

Here are a couple of podcasts that explain ketamine. It power washes the brain, resets it, heals the opioid receptors and works on waste in the brain. Something like that. I have bad PTSD from my disability and my family of origin. Nothing has helped as much as ketamine, not even close.