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Posts Tagged ‘frustration’

Hi out there. I’m still alive. My heart still beats, my lungs still breathe, my body still keeps running along, and my mind struggles to handle the situation.

We know now that my back injury is almost 100% definitely all muscular. The only shadow of doubt is that with EDS, imaging studies can be a bit…less than accurate. What our spines and brains look like when we’re laid out prone and what they look like when we’re upright don’t really match up. I’m hoping to get a set of imaging done on an upright MRI later this spring or possibly this summer. I’m afraid of the results, as I have so damn many symptoms of a condition called Chiari, where parts of the brain (the cerebellar tonsils) lie too low and cause pressure on the brain. It would explain so much – the random waves of vertigo, the fainting and borderline low blood pressure, the tingling and pain in my hands, arms, feet, and legs, the memory issues, etc etc etc. It’s one of those situations where neither answer is good, and I probably should be pushing for the answer faster but to be honest I’m a bit tired just now.

I have a new injury to add to the pile – I managed to dislocate two of my ribs just shy of a month ago. It has been exceedingly uncomfortable, and it flared up the back problems again. Things are settling down, and I’ve been fitted for a brace that may make long-term improvements to the condition of my back. The drawback is that it’s a rather bulky thing, and not terribly attractive. In the short term, I intend to wear it over my clothes; in the long term, I am not sure whether I will buy larger clothes that it can be hidden under or continue to wear it outside or perhaps only wear it when I am in pain. I just don’t know. It isn’t the first time that I’ve had to wear a visible brace – my knee braces are visible when I wear shorts or skirts, and my finger braces are visible any time I wear them. It’s just that when more formal dress is called for, I can easily hide the knee braces with a long skirt, and my finger braces are made of silver and relatively attractive (not to mention I generally only wear them for things like typing and crafting). This brace will be harder to hide. If I buy larger clothes, they will not be flattering at all to my body, and you’ll be able to see the outline of the brace under my clothing quite easily. So at least for now, while I am wearing mostly t-shirts and jeans, I’m not going to cover up the brace.

Anyhow, moving along. I’ve had to drop one of my three classes because of my damn injuries, which is terribly frustrating. I’ll end this semester with 78 units, and I need a total of 88 to graduate. Because of the damn dropped class this semester, I’ll need to add a summer course to make sure I have enough units to graduate. It’s a frustrating situation, where I can look back and say (at this point) that I have paid for and worked on 28 more units than I will have credit for, because I wasn’t able to finish them due to injury or illness. It works out to about a year and a half of my life just thrown away, or at least it feels like ‘just thrown away’. Ugh. And having taken so long to get through law school, the finer points of your basic classes are a bit…fuzzy. I’ll need to re-learn the material in order to take the bar exam. It’s terribly frustrating, all of this, and I don’t have words to explain just how angry the whole thing makes me. I just…I just want to be done, I just want to be practicing and helping people. I don’t WANT to be in any more classes – at this point, I’ve been taking classes for 13 of the last 14 years (one of those at half-time while in high school, but I was taking college classes all the same). I’m more than ready to be done with school.

I’ve got to let go of that now, or I’ll spend the whole night awake, frustrated and angry and spinning my wheels thinking about how unfair it has all been.

Bailey continues to be a lovely pet, though she’s a bit of trouble. She’s been getting into fights at our dog park; what seems to happen is that other dogs get somewhat aggressive with her, and then…well, she may not start the fight, but she’s quite willing to finish it. 3 of the last 4 times have resulted in a minor fight. There have never been any serious injuries, just scratches once or twice, but it’s not good all the same.

We’re moving next month, ugh ugh ugh. I like the new apartment, though it is a little farther from school than the current place. It’s on the ground floor, and it’s accessible (!!), so it’ll be easy for me to get my scooter in and out, and one of the bathrooms has a fold-down seat in it. Wonderful! It’s a 2-bedroom place, and very recently re-done. They had intended to make them condos, but then the market tanked and they became apartments. I’m not sure how the size of our current place relates to the size of our new place – the figures I’m finding online for the square footage of our current place just can’t be accurate! I know that the new place isn’t 50% bigger than the old place, but that’s the lie the internet is telling me right now. I think they may be very similar in size and just very different in shape. Everything is squarer, instead of the long narrow rooms you get in row houses. We’ll have a sitting room and a library, and the second bedroom will mostly be storage for my craft stuff, along with things like my drafting table so that I can paint. I hope that being in the apartment won’t make our dog-related allergies worse, but it’s a definite possibility. Perhaps the hardwood floors will make up for it.

I don’t know if my aide will follow me to the new apartment. It’s not convenient for her, but oh will I ever miss her if she doesn’t come with me. I just discovered that there’s a way to get to the new place that will take her the same amount of time as getting to here, so she just might come with us. That would make me very happy. Having a totally trustworthy personal care assistant/aide is not something you can take for granted. I know that Nikki will do what I ask when I ask it, and do it my way even if she’s got a different way she prefers to do it. I also know she won’t steal, as she’s worked for me 4 years and had plenty of opportunity and never taken anything, even money (accidentally) left in plain sight. She’s also very good at her job and hard working. I’ll be all kinds of torn up if she doesn’t continue working for me! To top that off, there’s no longer a good system for me to get a new aide. It used to be that there were agencies that employed the aides, so if you didn’t like yours, you could request another. They made a big shift in my state on how the aides are organized now, and to be blunt there really isn’t an organization of aides anymore. No one I can turn to and say ‘excuse me, I need an aide!’ All of us who employ aides now have to find them for ourselves. It’s not a great situation in my humble opinion. I don’t want to be putting ads in Craigslist or whatever, and hope that the new person is anywhere near as good and honest as Nikki. Besides all the doing her job well stuff, I like Nikki. She’s good people. And if I’m too far away, it works out bad for both of us, because of that lack of organization. There isn’t anyone SHE can go to and say ‘I need another person to work for.’ It’s just a yucky situation all around. Apparently it’s costing the state less (my aide is paid by my state, because I am disabled and broke).

Ugh, enough of that.

As you can see, things have been a bit more interesting around here than I’d really prefer them to be. All this time, and I owe a company a product review for some stuff that I’m very fond of and would like to tell you about! Not to mention how little I’ve written about my life, and being a service dog partner, and being a law student, and being disabled, and so on. I’ve written near nothing that wasn’t school related in ages. I have piles of notes for my various classes, but nothing personal and nothing literary. Blah. I suppose it’s a pretty good reflection on my life lately.

In the to-do box are things like visits to a neurologist, seeing an ophthalmologist and getting new glasses, packing up and moving into the new place (we take possession on the 15th, and have to be completely out of the current place by the end of next month, so we’ve got a bit of time for ferrying things back and forth). I have a knitted project that I really must get finished, as it was sold to someone in exchange for a large donation to helping orphanages in Haiti. I’ve also got to alter my mother’s Christmas present (I knitted a sweater and it just didn’t fit) and finish my nephew’s Christmas presents (a pair of crochetted lions, which just need to have their faces embroidered on at this point, but I’ve little love for embroidery).

So many things to do, and just the two hands to do it, with one of them twitching randomly in a most annoying fashion. I’ve had a very mild intention tremor since I was 13 or so, but now I have this major shaking both at rest and when I try to do some actions, like holding something still (rather ironic, that, isn’t it? I try to hold something still and instead I shake it). One more thing in the pile. I’ve been having my nails break, my skin dry and breaking out, and my scalp hurting and flaking and scabbing over, and we’re not real sure of why just yet either – it could be my thyroid, but it’s rather unlikely, and I don’t know what the next possibility after that is.

Anyhow, I am rather tired now, and when I get sleepy, I must away to bed. My insomnia is a pain if I do something stupid and work through being sleepy. Good night, everyone, and I hope that things have been treating you better lately than they have me!

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As of Friday, I’ve officially been diagnosed with Lyme Disease.  It’s a clinical diagnosis, partially based on my reaction to antibiotics in December (I was exhausted but the pain and swelling totally disappeared).  I’m supposed to get blood drawn (tomorrow, hopefully) to check for Lyme antibodies, but at this point I have enough symptoms that my GP was willing to call it.  See, the tests for Lyme are pretty unreliable – the false-negative rate varies from 30-50%, which is pretty absurd.

I’ve been on antibiotics since Friday afternoon, so I’ve now got 2 days worth of pills in me.  I’m tired, but my sleep schedule has been pretty messed up lately.  Have any of you ever seen a mouse or a hamster (or a rat, I suppose) slip while running on its wheel?  If they’re going the right speed, they kind of get thrown around in there like clothes spinning and bouncing around in a dryer.  That’s what my sleep schedule has been like lately – I’ll get it going reasonable for a day or two, and then it’ll get majorly screwed up again, and I’ll be thrown around for several days by that.  It doesn’t seem to matter whether I take the measured approach to fixing things (adjust by just a little bit at a time) or the radical approach to fixing things (either stay up a huge amount of time or knock myself out with sleeping pills, either way designed to get me asleep at the appropriate time).

This video gives you an idea of what I’m talking about: http://www.youtube.com/watch?NR=1&feature=endscreen&v=buUKHggrhd4 (I wanted to embed it, but it looks like WordPress wants to charge $60/year to let me embed videos.  wtf, man?  I just want to embed ONE now, it’s not something I do a lot…grr)

That?  That’s what I feel like with my sleep schedule right now.  And I keep having to jump back on the wheel because, well, you can’t go without sleep.  Not to mention, a girl’s got to get to her doctor’s appointments and her classes.

I’m also dealing with what seem to be fairly typical Lyme symptoms.

Rage.  Oh my god the rage.  There are things going on that it’s perfectly normal to get annoyed about.  I’m not annoyed about them.  I want to verbally eviscerate my fiance because the house is messy.  The fact that he’s stressed out to the point of being somewhat emotionally fragile at the moment (which means that I feel like I should be more careful about snarling at him than usual) is producing a very counter-productive reaction: I’m even angrier and want to yell at him even more.  It’s at its worst late at night, which would of course be an especially bad time to yell at him because he’s an early riser and tends to be impressively incoherent when woken up in the middle of the night.

The screwed up sleeping schedule I mentioned is another typical Lyme symptom.

The forgetfulness is…I don’t have words for it.  I sometimes lose track of conversations mid-sentence.  I’ll be saying something and then all the sudden I have NO IDEA what I was saying.  It’s exasperating and it makes me look stupid.  It also frustrates the ever-loving crap out of me.  I also can’t remember anything I’m supposed to do, nor can I remember to ask my fiance to do things when he’s awake, which means that I crawl into bed at ungodly hours of the night and wake him up to ask him to do something, which he has trouble remembering (because the poor guy was asleep), which only adds to my rage issues.  Completely unfair, and I KNOW it’s completely unfair.  Which only makes me angrier.  *facepalm*

I suppose I should add a psychiatrist visit to my to-do list, to deal with the anger, and I know I need to see my sleep specialist, only I never remember when his office is open and I’m free to call.

All in all, the collateral damage from this damn infection is impressive and frustrating and ye gods do I need this thing to go away.  I mean, I’m not normally a tranquil person, and I tend to have bad sleep patterns and a bit of being scatterbrained, but this?  This is just absurd and unlivable.

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