Another (nearly) sleepless night…

[00:00:03]All right. Um, I am up.

[00:00:10]It is going on 3:30 local time. Um, I slept for, sorry, math is hard. I have major brain fog and I slept for less than 3 hours, 2 hours 45 minutes.

[00:00:35]Um, if I were home, I would be in my bathtub.

[00:00:43]Um, water seems to really help um with my nerve pain and function.

[00:00:56]Um, that was an accidental finding um last summer swimming in the lake um by my in-laws house.

[00:01:08]um got in the lake and realized my um my pain was pretty much gone and my hand my right hand which is most affected um it worked. I could do um different exercises um that I had learned at physical therapy that I wasn't able to do without um using my left hand to um make my right hand do the exercises.

[00:01:48]Um it might not be making sense. My brain doesn't really work. That's obvious.

[00:01:54][laughter] Um, so anyhow, if I were at home, I would be in the bathtub. Um, cold water. Um, is my preference. However, since being at Spiro, I'm told no more ice. So, no more ice baths. And I live in a camper now. So, um, no bathtub here. Um, so no baths. Um, anyhow, so I'm up. I've got my uh recovery unit on. Um, it's on some muscles that I have an electrode here on my pectoral muscle and one here on my bicep. Um, these are areas that were worked yesterday during NMR therapy at the clinic. NMR stands for neuromuscular re-education. It is the therapy that is most like physical therapy. It is the most difficult therapy at the clinic. Um it I call my therapist, my drill sergeant. Um she's very sweet. But she did inform me that this week we entered our lovehate phase of our relationship. So things are moving really fast because it was only my um eighth day.

[00:03:44]Yeah. Eighth day of treatment yesterday.

[00:03:48]Um, so, okay. So, I've had some questions.

[00:03:54]Um, I haven't looked through all the comments.

[00:03:57]Um, a text from a close friend um asked about kind of explaining CRPS a little bit. Um, so it is a rare neurological condition.

[00:04:20]Um, I didn't realize how rare it was until until things got really bad and I was just desperate for help. And so I was actually planning to go to China with my cousin, my cousin's wife.

[00:04:43]Well, actually, my husband's cousin's wife [clears throat] when you've been together over two decades. Um, your spouse's cousins or your cousins. So, you know, anyhow, I was going to go to China for holistic care. Um, and I was googling.

[00:05:06]Sorry, I fidget a ton. Um, to try to reduce the pain. This is just like a travel pillow. Um, anyhow, I was going to go to China and I was googling what are they going to do for me in China for my CRPS and um, Spiro Clinic popped up. Spiro Clinic is in Fagetville, Northwest Arkansas.

[00:05:42]Um, if you're from Indiana like me, it is similar to Bloomington. It's a college town.

[00:05:53]My leg's um but it is bigger than Bloomington, I believe, populationwise.

[00:06:05]Um, and it's more spread out. There's six exits on the interstate for Fagatville. Um, so anyway, Spiro popped up, Northwest Arkansas, I was like, "This is where I'm going to go." So I told my husband and um, you know, we can't afford this. Most of the therapies are not covered by insurance. The ones that may be covered, um, we'll see.

[00:06:42]So, we can't afford it. I'm saying I'm going to go here um like respectfully like agreeing and disagreeing, but it is clear we're both on the same page like this is um this is where I need to be to try to heal. Um, so just constantly praying that um, Spiro will be the vessel that heals me before um, we run out of money.

[00:07:18]Uh, only in America, I guess. I don't know.

[00:07:23]Healthc care is crazy here. Um, but that's a whole another thing. So, back to CRPS. I have major ADD tendencies too. So CRPS stands for complex regional pain syndrome.

[00:07:40]Um I believe in this country it was named during the Civil War.

[00:07:50]I could be wrong, but I believe in my, you know, learning about my problem. Um, or one of them, [laughter] uh, I believe that's when it was first kind of named here in America. Formerly it was called reflex sympathetic distrophe. Um so I was diagnosed about a year ago. Um recently found out there are two types.

[00:08:26]So type one is 90% of people um where you know could be from an original injury. So, my wreck in 2020 could be from um a combination of an original injury and like surgical procedures to try to uh ease um symptoms.

[00:09:00]Um, so yeah, lots of nerve blocks, ESIs, that stands for epidural steroid injections. Um, selective nerve root blocks. Um, and then my last two, uh, right before I came here, I had a, um, stellate ganglen block on the right and then a week or so later on the left. Um, so yeah, the one that the CRPS showed up after was a selective nerve root block. Um, [clears throat] it seemed to go as smoothly as possible.

[00:09:52]um meaning I didn't have a ton of odd sensations during the procedure itself. Um I always deny sedation because I have the MTHFR mutation. So uh specifically my body does not process um drugs well. So, um if I were to go under like anesthesia, um pretty much my whole day is like ruined. I'm just sick. Um so, anyhow, there's lots of other drugs and medicines I've tried over the years.

[00:10:39]Uh we won't get into all that now, but um having all of these nerve blocks um without sedation is like an outof body experience.

[00:10:51]Um yeah, we'll have to go into that another time, too. There's just so much. Um so, back to CRPS, type one or type two.

[00:11:04]Um, type one, I think I covered pretty much formally RSD.

[00:11:11]Um, type two, um, is only 10% of people people um, it was formerly c called causalgia maybe. Um, I'm probably not pronouncing these things correctly. Um and that is when there is a um like a specific nerve injury.

[00:11:39]So, when I started asking questions to my spine doctor back home, whom I adore, um, I didn't even know that there was a type one and a type two of CRPS. I'm not big on Dr. Google. Um, so yeah.

[00:12:08]Uh, don't Google CRPS. [laughter] If you Google it, you'll find out yucky things like it is one of the diseases that are nicknamed the suicide drug because uh, yeah. So, uh, anyhow, I'm not a fan of Dr. Google, which can be a good thing and a bad thing. So, I start asking my spine doctor back home questions like, "Am I type one? Am I type two?" And um pretty much contact is kind of cut off or dramatically slowed with his office on their side.

[00:12:58]So, hot. and my neurologist who is in a separate practice. Um, same thing. I go in for um an appointment with a nurse practitioner and because my neurologist couldn't get me in um 3 or 4 months was her weight even though I'm a current patient. Um, so I see a nurse practitioner there who was great. Um, very sweet.

[00:13:35]Unfortunately, most of the questions I asked, she uh could only say, "I'm so sorry." And um, I don't know. I don't have the answers to your questions. Um, I was told that I would receive a call later that day um, that afternoon after she spoke with my neurologist. Um, I never received a call. I three days later called to follow up. I left a message. I said, "It's okay if you don't know. Um, can you just tell me? Um, are you going to refer me somewhere else? Um, are you still looking into it? Are you just busy? You haven't had time?" Um, still haven't heard back and That was sometime in May. Um, which seems so long ago, but I know it's just June.

[00:14:35]Uh, [sighs and clears throat] yeah. So, again, had a good relationship, I felt like, with my neurologist and this nurse practitioner that I just met that day. I felt like I had a great relationship with my spine doctor. um talked a lot about his family, talked a lot about my family. Um and then you start asking questions and they stop communicating with you and then you just have more questions.

[00:15:03]Uh yeah, so I thought I knew when my CRPS started our wreck in 2020.

[00:15:19]Um, and then now I question if it was the the block that I had last May.

[00:15:27]Um, which I lost the use of my right hand shortly after. Um, and then when they ruled out MS, a stroke, and a brain tumor through an MRI. And then I saw a neurosurgeon um for consult. No, I saw him first the neurosurgeon and then he sent me to um you know for further studies because CRPS my my nerves are shot and it's not even my kids or my dogs or my husband that shot them.

[00:16:15]>> [laughter] >> Uh yeah, I always say I have to laugh because if I don't I will weep.

[00:16:26]So um anyhow my nerves, those of us who have CRPS are central nervous system. Our nerves are telling our brain is telling our nerves.

[00:16:46]This is all in the brain. Our brain is telling our nerves pain pain.

[00:16:54]Um and the pain is real and the pain is severe. Um but our physical injuries um are not as severe as the pain. So my physical injuries, my cervical spine issues um my nerves should be going pain pain, but they're not. They're like out of control.

[00:17:30]So, trying to get my brain right, okay, so my nerves can behave. Um, so at Spiro, they are holistically trying to reset your central nervous system through um a variety of therapies um and indiv individualized treatment plans.

[00:17:57]Um, yesterday I had nine appointments.

[00:18:03]Um, I think today I'll have eight. I'm so tired.

[00:18:09]Um, so yeah. Um, sleep is hard because the pain is so bad.

[00:18:22]uh a friend who well friends a friend who has her daughter here at the clinic. She offered to make me a um a wart catnip tea and that helps with sleep.

[00:18:46]And I used it the night before last and actually slept 6 and 1/2 hours and I only adjusted once. And my I actually like could move in the morning. So, I I attributed that the movement to this rescue unit because at home, if I were to ever sleep, you know, pretty good, um my pain was through the roof because I hadn't adjusted properly um through the night to um cope.

[00:19:20]Uh, I I drank the tea again, you know, last night, whatever, tonight, earlier. Um, and fell asleep quickly. Um, but then woke up, um, let's see, 2 hours 45 minutes later with severe right shoulder blade pain. Um I tried for 45 minutes to fall back asleep and while I am exhausted in all ways um sleep eludes me um the pain is so severe in my right shoulder blade. It feels like there is a knife or perhaps just a piece of something that has impaled me and it is just grinding into my shoulder blade relentlessly. Um, it's hard to describe the pain sometimes. Um, yeah. So, CRPS, my nerves are shot, pain is severe. I didn't know how bad the pain was. Um, overall, so I knew how bad it was for me.

[00:20:56]I thought I had a good pain tolerance.

[00:20:58]Turns out I do. There's this scale called I think Migill um so it com compares like um child birth to CRPS in other uh pain you know instances.

[00:21:17]So, I have three children for those of you who don't know. Um my older two were um vaginal births and then my baby who's seven now um was an emergency cescareian without adequate pain medicine due to the fact that I was on um Hepin, which is a blood thinner. um at the time of placental abruption. So emergency cescareian that again will have to be a story for another day. Um but I uh was able to endure a an emergency cescareian without adequate pain medicine and without being put under if um if you can believe that. But my um gyn is she's she's incredible um in most ways.

[00:22:29]And um not only did my baby survive, but I survived. And so yeah, that's a story for another day.

[00:22:39]But the moral of the story is um CRPS pain is um unlike anything I have imagined I have experienced.

[00:22:55]I would not wish it on anyone but the devil himself.

[00:23:00]Um it typically is in one limb to begin with. Um, so for me, right, hand and arm, um, I've asked my husband hundreds of times to get the saws all out and cut my right arm off, including my shoulder blade, and then the pain would be gone. But people have had amputations with CRPS, and I believe most times the pain is not gone. they have the phantom pain like one might have with an amputation.

[00:23:40]Um the pain in CRPS can move to your other limbs. It can move to your digestive system.

[00:23:51]It can go full body. Um uh in my experience um it is moving into my right foot, specifically my big toe.

[00:24:09]Um it's been giving me pain in my heel. Um my joints.

[00:24:17]Um mine is mostly rightsided.

[00:24:23]um my donia which I've learned that term since I have been here uh that is like hyper sensitivities. So I had if you can believe this my husband measured it an 11in ponytail before um I don't know before I came here. So, a few weeks ago and um my pain changed and my hair felt like razor blades on my um on my neck and on my shoulders. So even though I was telling myself um it's our hair, you know, telling my brain it's our hair, um my nerves would not listen. And so my hair had to go. And while I asked my husband and family members and friends if they would cut my hair off, um no one while everyone supported that, no one wanted to be the um the vessel to provide that relief. Okay.

[00:25:42]So, um so I ended up going into a great clips um a few days later back home and got over some, you know, [laughter] PTSD with great clips from my middle school years there. Had a great um stylist who um yeah, cut my hair um back home. Um, [laughter] I walked into the Great Clips and I was like, "Can somebody please cut my hair off? I'm going to Britney it if not."

[00:26:27]And if you know, you know. I was for real. This is not a joke. So, once they looked at me and realized I was, you know, pretty sane, uh, they made that happen. So, yay.

[00:26:39]Um, and then since getting here, oh my gosh, so my hand is electric. Uh, it's like an electrical fire in my bones and it's pins and needles and it's I'm going to be shooting lightning bolts out my fingers for a superpower. So, anyhow, that'd be cool. Um, yeah. So, I had hair a few weeks ago and then since getting here, the destonia has moved to my face.

[00:27:18]So, when it's touching my face up here now, cuz it's a little longer up here. Oh, when it's touching my face, it is feeling like razor blades. Um, so I'm probably going to have to have this top part cut more, but not yet. I have a bunch of testing um or that just got ordered yesterday.

[00:27:48]Um, and I so they have to do a hair sample and I don't have much in back.

[00:27:54]So, we're already um concerned if we're going to be able to get enough hair for the hair sample for this test.

[00:28:02]Um, I might have bald spots. I hon, what my hair looks like is so far from my uh priorities at this point. Um, yeah, hair. But I got my haircut again here, which again, I found a great stylist.

[00:28:28]She knew what CRPS was. I've been to the ER for migraines and doctors don't know what CRPS is.

[00:28:41]and the stylist here who was uh recommended by another patient at the clinic, not a CRPS patient, a stroke patient. Um, but the stylist knew what CRPS was because she follows someone on Instagram um who has CRPS.

[00:28:59]I mean, wow.

[00:29:02]So, anyhow, she was great and cut it shorter for me. And I'm probably going to have to go back to her to get enough hair for the sample for this test and then also to cut it to where it's not touching my forehead at all. Um because um the donia and the migraines are least receptive. if the migraines are least receptive to the therapies thus far. I thought for sure it would be my hand. Um, but my hand has been um it's not relaxing now, but it has been um it has been able to they've been able to release it from what I would call extreme ri rigidity where my fingers are digging into my palm. my index finger was hyperextended.

[00:30:06]As my brain tells my hand to relax, it's like it just clenches all the more and the pain is just excruciating.

[00:30:16]Um but yeah, the NMR, the drill sergeant therapy, um a water bath with electrodes, it's as terrible as it sounds. It really is.

[00:30:28]But the exercises during that um actually did release my hand. I went into the therapy that day. It was last Wednesday afternoon um with my with my hand being super special. Um and I was like, "Do do I have to do it? Do I have to do the water bath?" And she's like, "Yes, it will release your hand." And she was right.

[00:30:52]And it released my hand. So, I've actually been able to pick up a pen and I've written some words. I'm right-handed, so but I've become left-handed since this happened a year ago. Um it did go into remission um last summer um through physical therapy back home and um I don't know but yeah flaring it up this time I think will have to be another story for another day cuz I'm looking at Timer 31 minutes. Holy smokes. If anybody bears with me that long, I mean, y'all must be bored.

[00:31:48]Uh, okay. I didn't There was one more thing I wanted to talk about, but I'm boring myself. Okay. Byebye.