Let’s be honest, it’s be a rough couple of days for me. First we got 15 plus inches of snow, which ok, that happens…
we live in the Midwest and with that comes snow.
I had naively just lulled myself into believing that maybe we’d make it through this winter unscathed….
Ok I can deal with that.
It really started for me on Thursday last week. I had an appointment with a neurology at the Cleveland Clinic specifically for neuropathy. You see, I have developed this random numbness in BOTH of my feet. My left foot has always been bad since I had the stroke in 2009, so bad in fact that I didn’t feel myself literally burning myself on a campfire in 2013, that episode left me with a 3rd degree burn that required a skin graft. Yeah so, it’s serious numbness. Now the numbness doesn’t hurt per say, until the evening hours, just before bed. OK well I’ve pretty much just dealt with it and thought I would look further into it once Jeff graduated and we had health insurance etc etc. The right foot numbness started shortly after a second brain bleed I had in 2010, which occurred about 10 months after my stroke. This was a “short” brain bleed because by the time I went to the ER and they did a Cat Scan the bleeding at stopped, but the significance of this bleed is that it occurred in the thalamus o the brain. At the time, no one really educated me on the significance of this area of the brain. Anyway, with this brain bleed, right foot numbness came just like the left side. VERY annoying and at times somewhat painful, but I’m still able to walk etc. So my Cleveland Clinic appointment was to get to the bottom of what’s going on in my feet. I was able to have some testing done at Baylor Neurology in Houston when we lived there for a minute and their conclusion was that I had neuropathy from an unknown source, so up until this point, that’s just what I was going with. I honestly just needed the Cleveland Clinic to take over my medications and start writing them for me.
Well that’s not exactly how it went.
After 4 hours and a frustrated neurologist, he determined that while I do have some neuropathy, the bleed in my thalamus caused more damage than I first realized and that I now have something called “thalamus pain syndrome”
Upon his exam where he poked me with a safety pin and scraped some instrument up my feet, now I knew this would be like poking a sleeping bear and I would “pay” for it later, little did I know how badly I would pay.
So Saturday rolls around and by this point, I’ve been trapped inside since Thursday from a blizzard, which means my routine was completely wrecked. So by 8pm that evening, I wasn’t overly surprised when my feet started to flair up, as this is their usual time to start acting up. I was however a little taken aback when the numbness turned into a pain that included a sensation of itching,tingling,picking sensation over my entire body, to the point that I couldn’t sit, lay or just be. I took Tylenol 3, a med that usually calms things down, waited an hour….nothing…
.Then I took hydrocodone….
waited an hour….
I don’t know if you’ve ever experienced this sort of phenomenon but it can throw you into a very dark place in your mind.
The only other time I’ve ever experienced this was around 2004 when we lived in Michigan and I had had a migraine for approximately 60+ days had been to the ER several times, put an air mattress in our walk in closet because it was dark and I remember calling my neurologist’s nurse and I literally said, “you better put me in the hospital because I’ve been in so much pain that if I have to live like this for one more day I will just kill myself” and I meant it. That type of pain, I would wish on my worst enemy. It’s chronic. It’s a slow death to your soul. I can’t describe it accurately enough to do it justice, but it’s where I was again on Saturday and I haven’t been in that place in a long long time and it scared me.
You see, I’ve worked really really hard to change my entire life to distance myself from the sick girl I used to be, primarily because that’s how I lived my life. In pain. Pain was all I felt from the time I woke up until I went to bed was pain. A lot of times the only way I could survive was to take medications that would ‘knock me out” to where I would sleep for 4-6 hours at a time or one dose, ok so got the picture?
So back to Saturday, I’ve taken some serious meds and they aren’t working, at this point it’s about 11pm and Jeff is sleeping and something I’ve learned is that you do NOT wake that man up unless you need to go to the ER and I didn’t think I was at that point, yet, although I did think I was getting close to that point. But the ER poses a dilemma here in this small area as well, you see there is a HUGE prescription drug epidemic here so pill seekers what do they do? They go to the ER and say they have “pain”…..ARGH…..not what I want to be labeled as, so I figured unless I blacked out and an ambulance needed to be called I would NOT be going to the ER, so I got on a Facebook group and asked for some advice. I was told to take a hot shower. At this point, I was willing to try anything, I would have stood on my head and counted backwards if that would’ve helped, so I jumped in a scalding hot shower. I don’t know if by this time the meds started to kick in or if the shower actually worked, but about 30 mins later I drifted off into sleep and sleep for about 5 glorious hours. The next morning I was dealing with a medication hangover, something I have spent the last couple of years trying desperately to avoid and still in about a 7 out of 10 pain. I thought for sure I would wake up out of pain, sadly this didn’t happen. That 7 pain scale was just enough to send me over the edge pretty quickly. I had breakfast and then retreated back to my room, texted my daughter to go get my husband, who was outside shoveling snow at this point. When she returned to my room with his response, this is where this whole blog post comes into play. When she told him I needed to see him. Which I was going to ask him to drive me to the next closest ER which was about 45 miles away because at this point I’m still in pain, exhausted and knew I couldn’t deal with a full day like I had the night before. His response to my daughter? “Tell your mom to take some meds and go to sleep” what the bloody hell? Livid my emotions ran the gamut. I get that this saint of a man has walked through hell and back to watch his wife go through unimaginable health crisis. I also know that it’s just easier, when you are a control freak, to deal with someone who’s mostly just comatose and that seems to be where Jeff would prefer me 9 out of `10 times. I’m trying really hard not to be bitter here, but it’s hard. I’m trying to be grateful for the things that he does do, which is a lot. He really is a great guy. I think we are just at a place where we are trying to figure out where this new “Angie” fits into our life. This Angie that doesn’t really require as much physical help like she once did. This new Angie that while still needy in a lot of ways, is discovering a new independence that is perhaps scary. I don’t know. These last 9 months have been a whirlwind of crap and that’s putting it mildly. Something that I’m learning is that it doesn’t really pay to have expectations or big life dreams because from what I’ve found is that they just go to crap anyway. So while I’m not this sick, helpless, frail girl that I once was, comatose, laying in a bed more days a month than out of it. I’m this more healthy vibrant version of myself with less of an optimistic perspective on life, perhaps a little duller more realistic version of me. I’m learning who this new Angie is shaping up to be and sick, in pain is NOT one of them!!