Full disclosure: I am writing this in advance. I am doing so because the morning of today’s dance I will be spending around 4 hours in the hospital getting out-patient Ketamine treatments and if I’m not legally allowed to drive myself home from these appointments or sign any legal documents the day of, I probably better write this up in advance.
“She’s down in it. She tried her best and now she can’t win.”
"And I don't know what I'm supposed to do, but if she feels bad then I do too. So I let her be..."
I picked this song, and I picked it specifically for its subject matter. This song is about Rob Thomas’ wife’s battle with chronic health problems and his feelings of hopelessness surrounding her illness. Because of my own health struggles, I figured I would use this song to address the elephant in the room about why I’m getting Ketamine treatments (which I will discuss in length below for anyone who wants to know), but first the song.
When I listen to this song now, I cannot even begin to imagine what Larry must be going through and my heart breaks for him. I know if given the chance he would move heaven and earth to make me better and believe me when I say he has tried. He currently works 2 jobs because I have been unable to work since August of 2020. He came up with this whole project and I know one of the many reasons was to give me something to focus on instead of the pain. He has been nothing short of amazing as we have taken this journey together, but let’s be honest, most of the focus is on me and how I’m doing. I don’t know how much Larry stops to think about himself and how HE’S doing, but I worry about him all the time. I hope he knows that all he does for me does not go unnoticed or that it’s unappreciated. I will never be able to communicate just how much I appreciate all the sacrifices he has made for me over the years.
NOW ON TO MY ILLNESS……
Aside from Larry and a very small group of friends and family I don’t really talk about my illness in detail, so a lot of this will come as a surprise to most people.
My official (current) diagnosis is non-length dependent immune-mediated small fiber neuropathy with autonomic dysfunction.
Wow, leave it to me to get some condition that you need a medical degree just to understand what’s wrong with you. It reminds me of a time in Mrs. Gardener’s junior high English class when we had to pick our own spelling words for the week (IYKYK). The words had to be at least 3 syllables and whoever found the longest word in the dictionary got some kind of prize. I don’t remember what the prize was (maybe because I didn’t win), but I do remember the word and how to spell it, pneumonoultramicroscopicsilicovolcanoconiosis. Apparently, it’s some type of pneumonia. That memory has stuck with me for many reasons, one of them being the thought of having that and then having to say it, spell it and explain it to anyone who asked. Some might call this foreshadowing. I think fate just has a warped sense of humor.
SO, WHAT IS IT?
The following is a description of small fiber neuropathy from the National Library of Medicine Website:
Small fiber neuropathy is a condition characterized by severe pain attacks that typically begin in the feet or hands. The pain attacks can affect other regions and some people initially experience a more generalized, whole-body pain. The attacks usually consist of pain described as stabbing or burning, or abnormal skin sensations such as tingling or itchiness. In some individuals, the pain is more severe during times of rest or at night. Individuals with small fiber neuropathy cannot feel pain that is concentrated in a very small area, such as the prick of a pin. However, they have an increased sensitivity to pain in general (hyperalgesia) and experience pain from stimulation that typically does not cause pain (allodynia). People affected with this condition may also have a reduced ability to differentiate between hot and cold. However, in some individuals, the pain attacks are provoked by cold or warm triggers. Some affected individuals have urinary or bowel problems, episodes of rapid heartbeat (palpitations), dry eyes or mouth, or abnormal sweating. They can also experience a sharp drop in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, blurred vision, or fainting. Small fiber neuropathy is considered a form of peripheral neuropathy because it affects the peripheral nervous system, which connects the brain and spinal cord to muscles and to cells that detect sensations such as touch, smell, and pain.
IN LAYMAN’S TERMS.
I have neuropathy due to an unknown type of autoimmune disorder; this occurs when a person's immune system mistakenly attacks their own body. There are around 80 different known autoimmune disorders ranging in severity from mild to disabling, depending on which system of the body is under attack and to what degree. My body is attacking these small fiber nerves and wreaking havoc on itself.
WHAT DOES THIS MEAN ON A DAILY BASIS?
Everyone’s experience with this is totally unique (I like to quote Forest Gump and tell people it’s like a box of chocolates, you never know what you’re gonna get) but for me it is constant burning pain over 90% of my body, and yes, I do mean constant. I used to say it was like coming in from the cold after being out in it for too long, you are so cold that it feels like you are burning. But now it’s more like in the movies when they show people through a thermal scope, and everything is all red and looks like it’s on fire. That is how I feel now. Like one big ball of fire. I have severe brain fog. (For those of you who have seen the movie Memento, my brain fog is like that, it’s hard for me to make new memories or remember things unless they happened before I got sick.) I should buy stock in Post-its and thank god for smartphones with all the alarms I set so I don’t forget to do things. I have the worst fatigue; I have literally never felt so tired in my life. I can’t get up or move too quickly or I get lightheaded and dizzy and my blood pressure drops. I am nauseous ALL THE TIME, so eating is now a chore and most times not even enjoyable anymore. There are so many other things that are going on because my body is attacking my small fiber nerves and messing with my autonomic functions (those are the things your body is supposed to do automatically i.e. heart rate, blood pressure, digestion, etc.) This “thing” I have is progressive and what started out as a loss of feeling in my right hand almost 7 years ago has now taken over my whole body. That’s the thing with autoimmune diseases, your own body is attacking itself and unless they can treat the underlying cause it will continue to progress.
THE JOURNEY.
It’s weird to think that 7 years ago I was pretty healthy except for that pain in my right hand and wrist. Since then, I have seen so many doctors and specialists. I have had so many tests run and as for bloodwork, well let’s just say I’m glad it replenishes itself or I think I’d be on empty.
My first appointment was to test for carpal tunnel since all signs pointed to that at the time. The test came back negative for carpal tunnel, and I was referred to a neurologist. The neurologist then referred me to a spine specialist and then another for a second opinion. I’ve seen a physical therapist and an acupuncturist. I’ve been to pain management both the traditional kind that prescribes opioids and a more nontraditional one that preformed an RFA (radio frequency ablation), they literally went into my spine and used a radio frequency to burn very specific nerves and kill them off. That was a very interesting time post procedure because I could feel the nerves dying off for several weeks afterwards. I used to joke at work that I literally had one nerve left and certain co-workers were getting on it. I’ve had MRIs of my brain to look for signs of MS. I’ve had a spinal tap as well. I’ve had Xray’s of my spine and again I cannot say it enough blood test after blood test looking for anything that could help figure out what this was and what was causing it. Blood tests would always come back fine, and I was left feeling like I was going crazy because no one could tell me what was wrong. By the second year of testing, I heard a neurologist mention small fiber neuropathy for the first time ever. He was pretty sure that’s what I had and there were a couple of tests that could help confirm. We did the least invasive one first because it could confirm the small fiber neuropathy without doing the biopsy. Of course, the results came back normal, and this was around the time I was moving back to Kansas. So now I’m in Kansas pretty sure I have this small fiber neuropathy but no longer have a neurologist, and now I’m in a holding pattern once again trying to find a new doctor. After I find myself a new doctor and have the initial visit, I decide I want to go ahead with the biopsy because it will give me a definitive answer on whether I have small fiber neuropathy at all. Low and behold the results come back and confirm the diagnosis of small fiber neuropathy, at that point I had basically lost almost 50% of my small fiber nerve function at the thigh and almost 70% at the ankle. All I can think is “see I told you something was wrong” and now I have the proof. But here’s the kicker, we now know WHAT I have but we still don’t know WHY I have it. The why is so important for treatment otherwise you are just treating the symptoms and not the disease and without treating the disease you can’t stop it from progressing. So, at this point I was given the diagnosis of Idiopathic Small Fiber Neuropathy which is just a fancy way of saying they have no fucking clue why I have this, and for some doctors that’s enough. They are basically like we know what you have so let’s just treat your symptoms, pat ourselves on the back and send you on your way. But for me it wasn’t good enough. I NEEDED to know what caused this and what we could do to stop this from progressing any further. So, I went out and found a doctor who felt the same way. He never called it idiopathic; he preferred to call it causes unknown. Which yes, technically mean the same thing but one implies the search is over and the other implies we are STILL searching.
THE GOOD, THE BAD AND THE UGLY.
Now don’t get me wrong, there are some very excellent doctors out there, they are compassionate, caring and truly want to do everything they can to help you find answers. I know because I have been lucky enough to have a few of them. Unfortunately, not all doctors are like that, and those doctors can be dismissive, rude, and they wouldn’t know compassion if it bit them in the ass. These doctors just do not listen to the patient at all or offer horrible advice/opinions. I’ve had my share of doctors that don’t listen, tell me my symptoms can’t be what or how I say they are because that’s just not how it happens, or my personal favorite tell me it’s because I need to lose weight when the reason I gained the weight to begin with is because you put me on some med that causes weight gain and to top it off the med didn’t even help with my symptoms, but it sure did make things worse with all the side effects. I also had a doctor that would only give me my MRI results personally and wouldn’t return my calls. When I did finally get the results, after calling the office several times and complaining, I was told they found several lesions, but it was nothing to worry about and was given zero explanation as to what could have caused the lesions and why I shouldn’t worry about them. To be honest I still don’t know if I should be concerned about them or not.
THE FUTURE.
The last 7 years have been such a struggle and the road ahead will not be easy either but to just be able to call it by its name is a huge milestone. And that milestone could not have happened without having finally found a doctor who acknowledged me and my pain, who listened to my story, and who refuses to give up until we can find all the puzzle pieces. This is more important than words can convey. Not only is this good for me mentally but it now opens options for treatment that weren’t there before. Which brings me to my Ketamine Infusions. As I mentioned before I have tried countless things to help with the symptoms, my doctors all agree that as of now I only have 2 treatment options left. The first is IVIG. IVIG is very expensive and trying to get insurance to cover it for my particular condition is not always easy. I was denied insurance coverage, so that leaves Ketamine infusions.
KETAMINE, MY FINAL FRONTIER.
Ketamine has been around for a long time as an anesthesia but in more recent years it has been discovered that it can help people with some types of chronic pain. It also helps some with depression, anxiety and PTSD (all of which I suffer from, yay me). My local general practitioner was the first to suggest it to me. After consulting with my neurologist, doing my own research and giving it a lot of thought in August of 2023 I had my first infusion. In the beginning I did 3 infusions a week for 2 weeks. Now we are tweaking things as we are still trying to find what works best for me. Currently I go every 4 to 6 weeks for a 2-to-3-hour infusion. It helps with the intensity of the neuropathy pain but unfortunately it does nothing for all the other physical symptoms, i.e. nausea, fatigue, brain fog, etc. It does, however, help quite a bit with the mental health issues so that’s been a nice “side effect” for once. So, as of right now this is it, my only option is to continue with the Ketamine treatments and hope it continues to give me some pain relief. I am still searching for answers and hope that one day we will not only know exactly what I have but why I have it. I also hope that when those answers come there will be something that, if nothing else, will stop the progression because I’ve pretty much given up hope that this will get better.
Since I referenced Forrest Gump earlier, I’ll end with Forrest Gump: “That’s all I have to say about that…”
Larry’s Perspective:
The Senator from Ohio yields his time to the Senator from Kansas.
To have and to HOLD, in sickness and in health...
Ghost of a Chance 