Feeds:
Posts
Comments

Posts Tagged ‘day in the life’

I saw my rheumatologist last week. I still don’t have an official diagnosis, but thankfully I DO have medication. I mentioned before that I’ve been on prednisone for a while now. Prednisone, while it treats inflammation, does not do anything to deal with the immune system malfunction that is CAUSING the inflammation. It also has a host of really lousy side effects – the hot flashes, emotional instability (including great anger – I think we’ve all heard of “‘roid rage”, and prednisone can definitely cause it!), weight gain, fat deposits that alter the shape of the body (usually rounding the abdomen greatly and adding a ‘hump’ of fat on the upper back), ‘moon face’ (the face getting all puffy and round), bone degradation, and all sorts of other fun things. The longer you’re on it, and the more you take, the greater your side effects. The original dose I was on did not seem to help, so my rheumatologist had approved doubling it. The week before I saw my rheumatologist, things were getting worse and worse. The on-call doctors at his practice increased my prednisone twice in response to my phone calls, which meant I was taking three times what he had prescribed when he started me on it. Lucky me, that was enough to trigger the ‘moon face’ effect. If you saw only my face, you would think I had doubled my weight – I have an enormous double-chin, and my face just LOOKS fat. I don’t think I’m a vain woman, but it was quite upsetting to see all the same.

My rheumatologist said that the latest two increases meant I was taking far too much, and lowered me down to twice my original dose.

He also started me on Plaquenil. It’s one of the first-line medications for rheumatoid arthritis, though it’s used in other rheumatological disorders. I suspect that at this point, the working theory is that I have seronegative rheumatoid arthritis. It’s a good match for my symptoms – I’m affected most in the small joints of the hands and feet, and in my spine, and that combination is not uncommon in RA. All of my blood tests other than indicators of inflammation and a very generalized indicator of autoimmune activity have come back normal, so whatever I have, I have the seronegative version of. At that point, it’s a clinical diagnosis, purely based on what the doctor sees in terms of my symptoms and how he thinks it fits together. It is entirely possible that at some point in the future, something will change and the blood tests will show precisely what’s going on. That happens for some people; for others, the blood tests are never conclusive.

So I’ve been on the new medication for just over a week. While apparently it has nasty gastrointestinal symptoms for some people, I have so far been spared that, despite my usual sensitivity to such things. I don’t wish to jinx anything, but the swelling in my fingers is already down slightly. I’m now back to normal, but I’m definitely slimmer. And the moon face effect seems to already be coming back down slightly.

Unfortunately, the muscular problems in my back are not succumbing to my efforts to help them. I did figure out that I seem to be exacerbating my troubles by using my iPad when I’m laying down. The worst of my muscular problems are between my shoulderblades at this point, and those muscles are working when I hold my hand up to type or navigate on the tablet. My physical therapist had some ideas about better positions to set myself up in, but then the tablet is far enough away that I can’t see what I’m doing! I think I may just have to accept that I can’t spend much time online until my back is doing better.

That’s really all that’s going on around here. I have projects that are just waiting for me to have my hands and back behaving at the same time – a hair clip I am repairing the finish on, a sweater that needs to be sewn together, and I’ve joined in a hair craft exchange for the holidays. So far, the only thing I’ve been able to do is knit, because neither my hands nor my back needs to be at its best for that – it doesn’t put as much pressure on my thumbs as sewing, and it doesn’t require sitting somewhere other than my couch the way other things I’d like to work on do.

I’m enjoying one of my classes, and the other two I’m just trying to keep my head above water. I’ve missed SO much class, the professors in those two classes would be well within their rights to refuse to let me take the exam, but it seems like both of them are willing to let me slide. Thank heavens. I don’t find the classes particularly useful for one of them – the cases are pretty self-explanatory – and while I do like the other class just fine, I think I just don’t get as much out of class as most people do anymore. I’ve been at this so long that I’ve gotten pretty decent at teasing out what’s important in decisions, I think. It’s funny, it’s much harder (to me, at least) to tease out what’s important given a set of facts than it is to tease out what’s important from a case. A case is all about principles, where a fact pattern is more like…matching recognition. You have to be able to pick out which pieces are like cases, and then apply the principles from the right cases. I hope that makes sense, I’m not certain I’m explaining in a way that makes sense to someone who doesn’t work in this field. It’s one of the reasons that there is talk about how useful law school really is. That, and unless you do a clinical of some kind, you learn very little about what the process actually looks like. Okay, someone comes into their office and gives you a bunch of facts…so what do you do then? What should this form or this request to the court or this motion or this filing look like? What order do you do things in? Who do you need to send things to, and how? And people are taught perilously little about how to bargain, which is often at the heart of legal work. Very few cases of any kind actually go to trial; most settle. And if you don’t know the very basics of how to bargain, how on earth are you going to get your client what they should get? I see this in exercises, where instead of giving an opening offer, someone will give a range of what they might accept. No, no, no, you start at the best end of your range and know in your head that you’re willing to accept less, and then see what their opening number is, and then both sides work towards a compromise, if possible. If you give them a range straight off, they’re going to START at your low end of acceptable and try to work you down from there. I never realized how much shopping at places where one haggles could be helpful professionally until I saw how very badly some people do at this sort of thing.

Anyhow, enough about school.

The fiance and I need to do something to insulate this place – the heat keeps cycling on, and admittedly it’s quite cold out tonight, but this is expensive. Unfortunately, we have electric forced air heat, which is terribly pricey. I don’t even want to think about what our heating costs are going to look like this winter. At least with my horrid prednisone hot flashes, we’re keeping the apartment relatively cool (64 degrees, where I normally am uncomfortable under 68 or 70), which I suppose is probably helping matters. I am realizing that the big bay window that I love in our living room is going to be a horrible heatsink all winter, because we can’t really put window film up to help keep it warmer. I guess we’ll just have to do all the other windows in the apartment, and get draft-blockers for the doors we rarely use (we have 3 outside doors – one to the ramp, one out of our kitchen, and one into the building), and just hope that helps keep us warmer in here. I definitely expected a place that was extensively rehabbed less than a decade ago to be better insulated! The worst part is that the room I need to be the coolest is the room that is consistently the warmest. I have the worst time with the heat flashes at night, so I like the bedroom cooler, but the heating system does not agree with me. So it’s sweaters and blankets in the living room for us. Ah well, at least we aren’t worrying about keeping guests comfortable, just us and the pooches.

Advertisements

Read Full Post »

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!

Read Full Post »

A great many people take Thanksgiving as a time to reflect on what they are grateful for, and how great their lives really are.

I’m not.  It’s the end of Thanksgiving weekend, and I didn’t get more than a couple hours worth of schoolwork done all weekend when I was hoping to get caught up.  My concentration is shit and I keep dozing off over my books.  I may not be allowed to take one of my exams because I missed a ton of class due to this muscular whatever the hell that seems to be tangled up with the arthritis.  While I feel better once I’ve been awake for about 3 hours, that’s longer than I can manage to be awake before class (that is, I can’t wake up 3 hours before class).  Were I to try it, I’d have to stay lying down because I’ve had a very limited amount of sit-up time, and I’d fall back asleep.  I did try once.  Fail.

I’m tired.  I’m sick – I have something that has completely stuffed up my head and blocked up my ears, and I have a GI bug giving me diarrhea.  Monday, I fainted and we don’t know why – I wasn’t having any dysautonomia/POTS symptoms, I just turned my head to the right, had shooting pain, and woke up slouched against the couch.  On Tuesday, Hudson did the unbelievable – he pooped in the building where my physical therapists’ is.  My sleep schedule is utterly and completely screwed up.  I keep forgetting to make the phone calls I need to make to get doctor’s apts and other things set up.  Not getting those appointments means I don’t get help with the things that are causing problems.  It’s a lovely catch-22.

The arthritis-of-some-kind is improving dramatically, but the improvement in my joints has made something else very clear.  I think at the beginning, about 1/2 of my pain and loss of motion was muscular; at this point, I’d say that’s 3/4 of what I’m experiencing.  I suspect I couldn’t separate the two out because with EDS, the pain is as much in your muscles and surrounding ligaments as it is in your joints themselves.  And it doesn’t improve.  Heat makes it very slightly better, motion starts as agony but eases into more comfortable motion.  Rest just means that I’ll be in pain when I start moving again (though if I do not rest and try to move all the time, the result is even worse).  I don’t really know what to do about all of that.

I forgot to get some critical paperwork filled out, and the deadline was 2 weeks ago.  I’m not sure if they’ll be able to work with me.

I had this dream several weeks ago, that I was diagnosed formally for the arthritis.  I quit law school, and between us my fiance and I put together a shop where I could do just about anything artistic I wanted.  It was quite a nice dream.  The best part was that I no longer had massive deadlines hanging over my head.  I’ve fallen behind on everything and blown every deadline since this all started in March.  I’m tired of always waiting for someone to get upset with me because I’m not doing enough, not present enough, et cetera.

It’s funny, I dream about not going to law school and I’m not sure I want to finish, and yet my first response to an email that suggested I might not be allowed to finish a class (and possibly more than one)  was to be so deeply upset that I was wildly nauseous and very upset.  I am less upset now, and the nausea is mild compared to how it was, but I still am loathe to accept an external force causing me to quit rather than choosing it for myself.  Because I’ll admit, it is a possibility.  It’s just not one I like much when I don’t have a choice, and when I have gotten So Damn Close to finishing law school.

I’m not saying I don’t have things to be thankful for.  I do.  I’m just refusing to be a Pollyanna and pretend that those things are in and of themselves enough to make life all good right now.  My fiance and my dog are wonderful, my lawschool has been pretty good about working with me, I have health insurance and a roof over my head and a car that functions, and all of these are good things.  Just life as a whole is…on the rough side right now.

Bleh.  My stomach is roiling again, and hte muscles of my arms, legs, back, and abdomen all ache and hurt.  This kind of pain makes me think of over-twisted rope, ready to snap.  *sigh*

Read Full Post »

Thank you.

Alan,

I know you will probably never see this blog, but I wanted to put this out here.

This afternoon in the ER, when they wanted to put in an IV to draw blood, I got hysterical.  My last trip to the ER involved what was even for me a rough time getting an IV in.  I was borderline phobic before, and have crossed into the real thing once again, I think.  I was when I was younger, and being re-traumatized didn’t help.

Without meds, you talked me down and distracted me, and hit a vein on the first try with minimal pain.  Thank you for NOT treating me as if my reaction was unreasonable or inconvenient.  That basic kindness and decency is so deeply helpful in situations like this.  It seems to be much the character of the ER you work in, but this was an unusually strong exemplar of just how awesome you guys are at this ER.  There’s a reason we don’t like to go anywhere else – I get treated compassionately, kindly, and thoughtfully here.  There are never issues with my service dog, and people actually care if I am okay.  ERs like yours seem to be a sadly rare phenomenon.  I can’t tell you how often I have been treated as if I was nothing more than a difficulty in other places.

So thank you.  Thank you for caring enough to not want me falling apart and sobbing.  Thank you for making this a non-traumatic experience.  But most of all, thank you for being patient and kind.

 

(P.S. – if you’re wondering about why I ended up in the ER, it’s kind of an odd story.  You see, this afternoon, right after I posted my most recent post before this one, something weird happened.  I had had a headache since last night which was neither a migraine nor a tension headache, as treatments that work on those had no effect on it.  I turned my head to the right, heard and felt a crack in my neck, felt shooting pain going to my left armpit and down the left side of the spine, and passed out.  I came to less than a minute later, dizzy and nauseated.  A little while later, I got to my phone and called my doctor’s office, where they advised me to go to the ER.  I threw up shortly after that, called myself a cab, and decamped off to the ER.  They did a little bit of testing (ekg and bloodwork), poked me a bit, and decided to send me home.  Apparently, I’m not urgently in trouble, but they do want me back in with my GP to try to get to the bottom of this.  Precisely what I needed with exams starting in two weeks, ah well.  This will certainly be…entertaining.

Read Full Post »

Right now, I’m on a combination of meds they don’t allow me to drive on.  It’s annoying, but before that my fiance was doing most of the driving anyhow, so the only change is that now I use cabs when he can’t give me a ride.  On the whole, it hasn’t been a big deal.

Friday, I called a cab to take me to physical therapy.  The cab got here and I walked out to it, with Hudson, a novel, and a change of clothes for exercising at physical therapy.  When I get to the cab, the cabbie is talking on his radio, and he locks the doors right before I try to open them.  I heard the sound of the locks going, and I assumed he was unlocking the doors.

He gets off the radio, and gets out and announces to me that I needed to tell the dispatcher that I have the dog, and that he has to put newspapers down on his seat.  He then spends the next 5 minutes scolding me for not having something to cover his seat.  He tells me that the city government will fine him, and that the other driver of the cab will give him a hard time over the smell (from my very clean dog?), and goes on and on and on.

Look – I’m disabled.  By the time I have all the things I need to be running around on a chilly day and waiting for people and doing physical therapy (or school, for that matter), I’m about maxing out my carrying capacity.  I can’t bring along one of the rugs I put down for Hudson when I have someone else to carry things.  And I don’t have a responsibility to do so.

We get to my physical therapy location, and I use the credit card machine in the back, and then he asks me if I am going to tip him.

No.  I do not like people who expect me to do all kinds of bending over backwards for them because I have a service dog.  I do not tip people who scold me.  No way.  You want a tip, you treat me with respect.  I would not have objected at all to him putting newspaper down for the dog, even though it made Hudson uneasy to lie on crackling paper.  But scolding me?  Uh-uh.

Read Full Post »

We flew back home Sunday (arrived early Monday morning), and on the way we had one experience that just shocked me.

My fiance had gone to take Hudson out to do his business, as it was a long connection so we had time for it.  I was on my scooter and headed to check in with the gate agents so they knew to pre-board me so we had time to get everything taken care of and settled properly.

A man started snapping pictures of me.  I couldn’t believe it!  He didn’t ask, and by the second picture I was giving him the ‘WTF is wrong with you?!’ look.

When my fiance returned with the dog, the guy once again took pictures.  When my fiance rode the scooter back to the gate agent so it could be checked, even more pictures.

I’m furious.  I don’t know what the hell people are thinking when they pull shit like this.  It’s not the first time it’s happened, and most of the time it’s people of asian descent.  I don’t know what’s going on, but I don’t like it.  It feels like being fetishized – people are taking pictures of me because I look disabled.  Or maybe it’s people who are taking pictures because I’m fat and disabled and use a scooter, so they can har har over the way I use a scooter because I’m fat (nevermind that I’m fat because I have a disability and have been on meds that increased my weight, and the scooter is to relieve pressure on my feet and knees that they can’t take because of my multiple, overlapping disabilities).  It makes me so damn mad.

I’m not here for you to take pictures of and amuse yourself with.  I’m just living my life and I’d like the space to do so without being a THING to you, thankyouverymuch.

(On the other hand, the guy who wanted to take a picture of Hudson because he’d never been on a plane with a dog before?  He asked first, and I was totally okay because A) the picture was of the dog, not me and the dog, and B) he ASKED and waited for me to okay it rather than just jumping in and taking pictures.)

Read Full Post »

WHOMP

Every now and again, you have times that really shove it in your face that you aren’t an able-bodied person.

For me, one of those times is when I get the flu.  What everyone ELSE gets as a regular flu bug, I get as a horrible stomach bug that almost always lands me in the ER due to dehydration.

I’m dealing with one of those right now, which is why I’ve been so quiet of late.  I hurt, and I’m sick, and I have the mental agility of a drunk.  Sadly, the fiance is working for a program for brilliant kids that has him hours away from me, and the roommate is also quite sick, so there is nobody here to take care of me but me.  Well, and Hudson, but sadly I can’t send him to the corner store for gatorade or to the pharmacy for regular medications.  I am hoping my doctor’s office can get me in tomorrow and give me a bag of IV fluids so I can stay out of the ER.  If my general practitioner’s office can’t see me, I’m going to call the GI’s office and hope they can manage to give me fluids even if they can’t get me in with my GI (which  I don’t think is necessary – all I’m after is something to keep this ‘just’ a flu and not flu + severe dehydration).

I feel like a rollerblader colliding with a lamppost.  Like I’m going to peel off and fall on the ground any moment like a cartoon, but for now I’m kind of hanging there stunned.

Read Full Post »

Older Posts »