Been a while!

I haven't realized it's been since January since I've posted, but life has been taking me in all kinds of directions, although, as per usual, most of them haven't been good, but hey, what else is new! You guys know me though, I just roll with the punches, let the bruises heal, and wait for more hits to come! Lots to catch up on, so this might be a long one!

Yes, you guys know me, I've been right on top of world events, and I'm just heart-sick at what is going on in Ukraine. As a child of the 70's/80's, it feels like I'm living in the Cold War era again, and I can't say it's not giving me nightmares. I'm not going to go too far into politics here, but I literally have not been this scared since I was a kid. What is happening to our world? It's like we're regressing...we need a reset on the entire world, everyone just needs a good slap in the face and a "snap out of it!". And people wonder why I'm scared to leave my house.

But anyway, enough of things I can't control (like I have control of the rest of this post either), I've finally got back in to my neurologist last month and got my meds back after 7 months without them, so I'm sleeping again (as much as I can sleep), and my headaches are starting to wane a bit. I also got the results of my nerve test that they did back in October (you guys remember, the one that I had right after Disney World that was absolutely horrible and I cussed like a sailor all the way through in a busy doctor's office?). Well, turns out I have moderate to severe nerve damage (nothing I didn't already know) in my feet and legs. Again, it's probably why I have a high tolerance for pain. My nerves are shot (in more ways than one!).

They also did an EEG because I had an episode where I completely lost a day of time. I have NEVER done that before and I really can't even explain it, but I'm still terrified over it. But the EEG caused numerous panic attacks as well (although I managed to avoid it during, although I don't know how), so I guess I won't be doing that again either. It was the fact that I was forced to keep my eyes closed in a medical setting that I was unfamiliar with, and I'm pretty sure it probably skewed the results of the test. At one point, I was singing a Duran song, reciting Shakespeare, quoting Wentworth's letter to Anne Elliot from Austen's Persuasion, reciting Snow's hope speech from Once Upon A Time, and walking through Disney World in my head, all, pretty much, at the same time. To say my mind was racing, was the understatement of the century! I literally didn't think I was capable of that much thought processing at one time, but the more upset I got, the more layers I kept adding on to distract myself (none of it worked, FYI). I just kept having flashbacks to that damned psych hospital. The joys of PTSD.

I don't know if any of you guys have ever had an EEG, but they basically put this cap on your head, screw in these little electrodes (and I had sores on my head where she screwed them in a bit too far, although I didn't realize it at the time), and then make you close your eyes while they run a series of tests. They eventually do these series where they blasts these flashing lights in front of your closed eyes. For someone who is a seizure risk, that was pretty stupid. I have to admit, by about the third sequence, I rolled my eyes as far back in my head as I could get them to block out as much light as I could (and yes, they were so bright, closed eyes or not, the lights hurt pretty bad). Yes, I'm sure I ruined the results, but I didn't care. My greatest fear is a seizure and I wasn't willing to risk it. When the test was done, she had to pry my hands off the chair and I had torn it with my nails (although it was a pretty crap chair in the first place). I was crying and shaking and I fell back down in the chair and couldn't get back up for about 10 minutes. She had to just let me sit there until I calmed down. Once I got out, I almost started crying again, but my Sister (who went with me, but they wouldn't let her in the EEG room), does that thing that she does that keeps me in check and I immediately stopped myself and I was able to stay composed until I got home that night (and I totally lost it for the rest of the night...thank god I got my Xanax back!).

I've also got in with an ortho and got my knees MRI'ed (MRI's I have no issue with, although between both knees separately and my head, I've had three MRI's in a two-week time span, so that was a bit much). One knee has a benign tumor (what is it with me and benign tumors? More on that in a mo-mo), and both have torn meniscus, very little to no cartilage left, and severe osteoarthritis. I think, of all that, the arthritis was the most surprising part. I don't know why having arthritis shocked me, but it did. I will say though, I had to call work and put off coming back for about an hour. I drove around town a bit and even stopped at a drive-thru and got something to eat (a rarity for me). I had to process the fact that I had another tumor. I think I took that harder than I did the one in my brain. Seriously? Another tumor? Crap.

Anyhoo, They did give me the steroid shots in my knees, and, as per usual me, I had the opposite reaction to every other person on the planet...they said it would take three weeks for me to feel relief, it took three weeks for me to get back to normal! My knees swelled up, they hurt like the dickens, and my right knee would get red down to my ankles at the end of every day. I was super pissed! Almost everyone in my family gets those shots in their joints and, once you start getting them, they are almost addictive, because you have to keep getting them, eventually, more and more frequently to get relief. We also had two dogs that pretty much died from the weight gain from them. Which is why I always swore I would never get these shots in the first place and I was kind of shocked at myself for going "OK" like a dumbass when the nurse practioner offered them up. My family also always claimed they are the most painful thing ever, but I didn't feel a thing. I literally watched that needle go in one side of my knee and almost come out the other side and then rinse and repeat on the other knee. Thank goodness for that nerve damage, huh?

So the plan, at least now, is that I'm meeting with the doctor next week to discuss extracting some of what little cartilage I have left, sending it off to a lab to grow more, and then putting the newly grown cartilage back in my knees to repad them. Sounds kind of sci-fi for Arkansas (and I'll be surprised if my insurance covers it), but if it works, yea me! I haven't even thought about the pain of having cartilage removed and then replaced, but then again, this is me here, I probably won't feel a thing. My Sister is also going to that appointment with me. I'll let her do all the talking. She went to school with him, so she can handle it. I'm just not good with dealing with things anymore. Maybe that way I won't do anything stupid like agreeing to steroid shots again!

When it comes to the tumors though, they are usually caused by repetitive trauma, so I have a new theory, although I've done some research online and I can't find much about it (other than the typical CTE, or Chronic Trauma Encephalopathy, which the issue a lot of football players get...damage to the brain caused my repeat concussions that affect them later in life). What I'm thinking is that, kids with Autistic Spectrum Disorder have issues with banging their heads, knees, hands, whatever, against walls, bedposts, or again, whatever when they are frustrated or angry or unable to convey their feelings across (I did this ALL the time as a kid, and still have a scar on one knee to this day from banging it on a bedpost when I was mad a the age of 2, but not the tumor knee). I'm wondering how many Autisic kids have these types of tumors and if there have been any studies about it..from my limited research, there hasn't been and I think there should be. I also think that other parts of my body should be MRI'ed, because I beat a lot of myself against a lot of surfaces (and still do upon occasion). I'd bet I'm riddled with these tumors. They can turn cancerous, but they usually just tend to cause irritation in old age. I'm getting old now and they are irritating me in various joints. Again though, there aren't a lot of studies of Autistic kids when they get old in any capacity, and there really should be...we do grow up and still are Autistic, you know?

Changing the subject, on the home front, my poor little trailer is falling apart. The roof has been taking some serious hits with all the storms we've had lately. Every storm has had hail and they scream tornado everytime it rains (although we have had some close calls recently, stupid global warming). My air conditioner has also been costing me a pretty penny lately too. It's on its last legs. And don't get me started on the floors. 30 years of inside dogs have done their damage. I've also WAY outgrown that trailer and my house is starting to look like a hoarder house. I'm also getting to the point where I don't even take new things out of the box, and that's how hoarders get started...buying crap and piling it up...boxes and boxes of junk piled everywhere.

So, I've finally taken the leap and started seriously house hunting so I can have more room (for more stuff). Problem is, this is the absolute WORST time to be house hunting! Houses are outrageously expensive, way overpriced for what they are actually worth and don't get me started on interest rates. And homes in the town I'm looking in (the town I grew up in, not the town I currently live in), sell, on average, in 2 to 7 days after posting...I am not kidding. And, somehow, people are paying cash (where is it coming from?). I had to apply for a mortgage first to prove I could afford the houses I wanted to look at (there were only two available at the time), and by the time I got the approval in literally 6 days time, both houses were gone. As of now, there are none available, although I check several times a day. There are also no lots for building a new home, so I'm in limbo. Maybe by the time I find a house, the market will be better and I can get the mortgage company to refinance at a lower interest rate.

On the plus side (yes, there is one), I only have three credit cards left to pay off, one of those will be paid off by the end of June at the latest. The more cards I get paid off, the more money I can get to buy a house (although, again, I don't want to spend that much on a house). Funnily enough, mortgage lenders are a LOT like car salesmen...pushy and try their hardest to talk you into buying something WAY out of your price range. The more I spend, the more my insurance, property taxes, and overall expenses on electric, water, and gas bills will be. No thanks! I just want something that works for me and my boys. I also have to be careful about how much I talk about buying a house, or I'll start having panic attacks. I'll start thinking about all the things I have to have, like lawnmowers, weed eaters, shovels, a new vacuum, yada, yada, yada. The list is endless. It freaks me out. Where is this money supposed to come from? UGH. And when I think about buying a house that I don't know who has lived in it and how many bad ju-ju vibes it might have, double UGH! I would definitely be better off building a new house, but I don't know if that's feasible right now with how much building supplies cost. I'm still waiting on word about that.

To top all that off, (and this is the petty thing) both Duran Duran and Tears for Fears are starting a tour, and I can't go to either. Although, honestly, I don't think that I could go to a concert right now, even if I could get tickets, but still. The new Duran Duran album is the best one in YEARS (although, don't get me wrong, I love the last few too, just this one is massively different), and I'm totally bummed I won't get to see it live, like sick-bummed. Let alone most shows are sold out and the seats that are left are horrible (and outrageously expensive, in the $400 range for the crap seats). When it comes to the TFF shows, there are tickets available, but the shows are pretty far away (not that driving a bit has ever stopped me before), but I would have to go by myself, and I can't do that right now. I have NEVER been to a concert by myself Maybe I could manage Duran, but not anyone else. Oh well, I can't afford that kind of money right now anyway.

So, I guess that's why I've been absent for a while. There's been no stitching, no new trips anywhere, and I've just been waiting for WWIII, while I try to buy a house that doesn't exist. Anyhoo, this was long enough, and "again" was apparently the keyword of this post, because I used it enough, eh? Thanks for listening guys, and I'll try to keep you informed on the home front. Keep your fingers crossed for me and hope I find the perfect house for me and boys with a nice big fenced-in backyard for them to play in and go OUTSIDE to the bathroom (probably for Bam to avoid since he hates grass, so he'll need a concrete patio...again, another expense, someone to spray for bugs, ugh). My knees and my head are what they are, they will either work themselves out or not. See you guys soon and hope you're all OK and taking care of yourself and staying safe!

Comments

It made me so happy to see a post from you! But I'm so sorry things are hard right now. I hope things get better soon and every thing falls into place for you :)
Like Khristine, I was happy to hear from you, but yikes, you got a lot going on! I can feel you on the general angst and fear, the whole situation in Ukraine had me scared for weeks as it's just terrible and also way too close too home. By now, I somehow have gotten used to it (and yes, I know how messed up that sounds, on more than one level!) and try not to think about it all the time.
Sorry to hear about your various health issues, I hope you'll be able to see improvement on at least some of them soon. Interesting theory about the tumors, I never thought about that!
Now, house hunting at least is somewhat exciting. Hopefully something will show up soon that looks good and that you can afford. Fingers crossed!
Linda said…
Hi Keiley. So happy to see a post from you. You are one tough cookie young lady and you will make it through. Always sending hugs and happy thoughts your way.

Linda
There's been a lot going on in your life as usual!
Sorry to hear about all the medical issues and so on. Hope you can get some help with your knees at least.
Interesting about the tumours. I can't say I'm surprised about the lack of research though. We have been trying to find out more about the emotional side of puberty in autistic boys. Apparently there have been no studies done because, to quote, every autistic person is different. But so is every NT person and I can buy loads of different books about them going through puberty!
Shame about the band tours. I wonder how much Simon would charge for a personal visit to see you and the dogs!