Posts Tagged ‘Oww’

Two weeks ago today, I picked up my back brace.

We’ve been thinking about getting me a back brace for some time now. Ever since I dislocated two ribs in March, really. After that happened, I had bought a soft posture corrector online. It seemed to help reduce my rib pain, and had the added bonus of keeping my posture a bit better. I’ve had back problems since I was 15, and shoulder problems since I was 17, and this seemed to be helping a little bit with both.

So my doctor decided that if the soft, kind of generic shaped posture corrector was helping, perhaps we should go in for something a little more structured. He sent me off to an orthotist, and the orthotist picked out a brace for me. It’s pretty new to the market, and part of what we all liked about it is that it’s a slim, light weight design. The California Eco brace seemed like a good answer for what I need – it provides support to both the lumbar and thoracic (that is, lower and mid-back, which covers most of my problem answers), and it helps pull the shoulders back and keep the spine aligned from the sacrum (the pelvis/hip bones) to the base of the neck. If you’re curious about it, you can see a good description and picture of it here – http://www.orthomerica.com/product/1606696-california-eco.

Now, I was supposed to pick this thing up MONTHS ago, no exaggeration. But we moved, and while I was still in physical therapy for the ribs and the back issues that came with them, I started my summer class. The summer class ended, and then my auto-immune thing flared wildly. I had bigger fish to fry than picking up a brace. Then fall classes were starting, and the auto-immune thing was still giving me problems, and my insomnia decided it needed to be a bigger part of my life. And frankly, if we’re being honest here, I procrastinated a bit about picking it up. I didn’t want to wear it. I didn’t want to be deciding whether I would deal with it making me all lumpy under my clothing or whether I’d wear it on the outside where it’d be visible. Anyhow, the stars and planets finally cooperated, and I was able to pick it up two weeks ago.

They told me to use the usual wearing-in schedule. For those of you not familiar with braces intended for long-term wear, this is how it works. You have to gently accustom your body to the new piece of equipment. So typically, you wear it for one hour on the first day you have it, and slowly increase the amount of time you wear it until you’re able to wear it for as long as you’re supposed to. I suppose ideally, I’d be working up to wearing it whenever I’m not in bed. Anyhow, the point here is that you start with one hour of wear typically. Being a somewhat cautious soul, I started by wearing it for 40 minutes.

It felt weird to have my posture altered like that, but not bad. It did feel good to take the brace off at the end of that 40 minutes, but anyone who wears braces will tell you that it pretty much always feels good to get the brace off at the end of the day, even when you’re completely adjusted and accustomed to it.

It was perhaps 6 hours later that problems started. I was watching TV and relaxing, and suddenly there is a horizontal bar of pain about an inch wide slicing across a space slightly broader than my spine. There were only a few minutes left to the show, so I figure I’ll just watch to the end and then go and lie down. The pain starts spreading, first the bar extending horizontally, and then increasing vertically. It traced down my spine and up my spine. My head began hurting terribly. And then it started affecting other things – my abdomen hurt so badly that I started retching. I went and lie down in bed, and the pain was bad enough that I was making noise and woke my fiance. I ended up throwing up, and it took me a while to figure out that I wasn’t having a tension-induced migraine (which was how I initially interpreted the combination of headache and nausea/vomiting). I got out my tennis ball and started working on the muscles right around where the pain started. It took me a good long while, but I finally got the worst of the pain to abate.

I spent the next week using heat, the tennis ball ‘massage’, and stretching to try to get the whole thing under control. I was doing not too badly by the weekend, but come Monday it got worse. So Tuesday, I got in to see the same day clinic at my doctor’s office. He’s impossible to get a same day appointment with, but the doctor I saw was quite pleasant. She gave me 2 weeks’ worth of muscle relaxants, and perhaps more importantly, a prescription for physical therapy.

I bumbled through a week of feeling truly dreadful, and then today was finally able to see my physical therapist. He does think that the brace is a reasonable choice, but we need to do some work on my back before my back is ready for it. And I need a much slower wear-in schedule, starting with no more than half the time I originally attempted. Shoot, I think I’ll probably just do 10 minutes to start! Anyhow, he did a lot of mobilization on my spine today, because that was a big part of the continuing problem – the muscles that support the vertebrae had locked up so badly that nothing could move. It was definitely not the most pleasant physical therapy session I’ve ever had, and my back is very tender now, but I am hopeful that this will help. The physical therapist also believes that in the long run, the brace will likely be good for me. It’s just getting to the point where I can tolerate it that’s the trouble.

In other news – I got my results for my blood work. It’s not going to be helpful in diagnosing me. All of the tests to pinpoint more specifically what kind of auto-immune condition we’re dealing with came back in normal ranges. Whatever I have, I apparently have the sero-negative version. While that’s not unheard of, it is a bit unusual. I suppose given how often I have the unusual version of conditions, I shouldn’t be surprised! I see the rheumatologist a week from tomorrow to see what he has to say on the matter. I hope that he’s able to put me on something that isn’t the prednisone I’ve now been on for almost two months. It has my insomnia acting up, and I have terrible heat flashes (to the point where I’ve been keeping the house about 4 degrees cooler than I usually tolerate, which is 6 degrees cooler than I normally like), and a couple weeks ago, I chewed out the fiance so badly over something utterly inconsequential that he was afraid to come home from work. Oh, and I’m sweating buckets, and I’d like to eat the whole world. Quite the unpleasant little drug. Necessary, but unpleasant. I’m worried that my doctor will want to keep me on it. If that’s the case, they’re probably going to need to increase my dose again, because the hand, foot, knee, and back pain is all coming back, and my hands are visibly swollen again. this is all getting old, body! I’m fed up with being swollen up. I just want you to go back to playing nice and not beating yourself up.

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Most of you who read my blog have done so for quite some time, and I’m sure you’ve noticed that in the past couple years, I’ve been much more quiet than in the past. I’ve been dealing with pain and inflammation and mental fog and all kinds of fun new symptoms while desperately trying to finish law school. It’s been a rough two and a half years, since the ‘new’ symptoms started.

For a while, my doctor and I thought it might be Lyme Disease. I responded positively to the right antibiotics, and very swiftly. We did several courses, and things improved a bit each time, then got worse again. Despite multiple blood tests, the only things that ever showed up were markers of increased inflammation.

I got frustrated with the status quo this summer, and asked to be sent to the rheumatologist again. If it was Lyme Disease, we had treated it pretty aggressively, and yet I saw no improvement. Besides that, I started having symptoms that are not as much associated with Lyme Disease. For example, I have psoriasis on my scalp, which has been there for most of a year, though it was only diagnosed this summer – I just kept forgetting to ask about it after the dandruff treatment did nothing to help.

Well, we have a general answer now. I probably never had Lyme Disease, but instead have had an auto-immune disease at sub-clinical levels. Basically, that means that my immune system has been attacking me, but not in a way that showed up in blood tests. I got the first positive auto-immune test – an anti-nuclear antibody or ANA test – about two months ago. About a month ago, whatever is going on kicked into high gear – my hands puffed up so that there were days I couldn’t even hold a fork, my feet were bad enough that some days I couldn’t walk, and boy has it been awful. The rheumatologist gave me a steroid to bring down the swelling, and then a week later had to increase the dose because the inflammation rebounded. My hands are now back to about where they were before this latest flare, though I’m still on the steroid so they’d definitely be worse without that. I’d like to eat the whole world and drink a lake. I also have a new found sympathy for menopausal women who complain about hot flashes. I was pretty dismissive before (internally! I’d never say such a thing to someone complaining about them!), but now I’m waking up every hour or two at night because I’ve sweated so much that the sheets are plastered to me and I’m so miserably hot from the waist up – and that’s with the apartment turned down cooler. It took me a week or so to figure out how to more or less balance things; until then, I was freezing from about mid-thigh down and frying on at least my head and often all the way down to my hips. On a good night, it’s only my head that gets hot, so I put a blanket over my body and turn the air down cold and then I only wake up a couple of times. On a bad night, I’m alternating between frying and freezing, and it’s making me groggy during the day.

At this point, there are definitely forerunners in the list of conditions that I might have. Psoriatric arthritis, rheumatoid arthritis, Sjogren’s Disease, and Mast Cell Activation Disorder/Disease are the current hottest suspects, as I understand things, but frankly none of the auto-immune diseases are entirely outside of possibilities. MCAD in particular has been observed to happen at higher frequencies among people who have EDS, so I suppose that may be the most likely, though it’s much harder to test for than the others. The second panel of more specific blood tests is due back any day, so hopefully I’ll have an answer soon. Unfortunately, the answer may well be that whatever I have, while it has been identified as auto-immune, can’t be identified more specifically via blood test. I pray that with an answer will come a more direct treatment. While the steroid is helping, and while steroids are often used in bad flares of rheumatological disorders, they are treating a symptom (inflammation) instead of dealing with the immune system itself. (Technically, MCAD seems to be classified as a hematological disorder rather than a rheumatological disorder, so I may need to be sent off to a whole different specialist, and people who treat MCAD are harder to find than people who treat what are more or less bog standard rheumatological disorders.)

I’m still feeling emotionally blitzed. On the one hand, there is a chance – an admittedly very small chance, but a chance all the same – that the past 7 years of health issues may all be linked to this, and thus may all markedly improve given effective treatment – I might get some semblance of the old Kali back, and the old Kali’s LIFE back. On the other hand, this has been going on for at least 2 1/2 years, and on some level I’m very angry about how long it’s taken and how little my doctors have been able to do to help me. Part of me feels like someone should have figured this out long before now – if the drugs to treat auto-immune disorders were not quite so powerful, I would have pushed for a trial of one long before now, because at least it would clearly eliminate auto-immune conditions, which can run at levels a blood test cannot detect for years, and may very well have done just that in me. I’m worried that the blood tests will be inconclusive, which means the possibility of less pleasant tests like biopsies to look for Sjogren’s. And I’m tired. I’m tired of it being one new thing after the next, tired of being sick, tired of being sickER, tired of the progression, tired of having to watch new symptoms blossom and often be present for long periods before anyone does anything effective about them. I’m frustrated with the whole medical industry, which I know is not completely fair to particularly my GP, who is a very caring individual who has invested a lot of time in learning to treat a patient as complex as I.

Hopefully, I’ll have another update for you all soon with an answer, and then we’ll get to start the treatment merry-go-round. Most medications for auto-immune disorders come with heavy side effects – oh, certainly, nothing to compare to the damage and pain of letting the condition run unchecked, but unpleasant all the same. I’m not looking forward to that part of a potential diagnosis.

And I’ve got to manage to hold things together through December. This is my last semester of law school, and at the end of this I’ll finally have enough units to graduate in May. Finally. It will have taken me twice as long as the average student, but finally I’ll be there. Then…well, I guess I try to open a law firm, which is its own terrifying adventure – new attorneys almost always join other firms, for good reason, and I probably won’t even have the money to hire a paralegal to help make sure things get done right. But that’s the next chapter, right? And hey, if my health evens out…maybe I can find a small firm that is willing to take on someone whose law school career doesn’t look all that great, so that I don’t have to figure out every step of this alone.

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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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Boy am I ever glad I had done some reading about Lyme treatment before I started it.

Doctors rarely think to warn their patients about likely side-effects of treatment. In the case of Lyme, I’m not talking about the direct side-effects of the antibiotics, though to be perfectly honest those are pretty nasty too. Instead, I’m addressing what happens to a body when you treat a major infection. You see, if you have a lot of just about anything growing in your body and start killing it, you get some fallout. That is true whether you are talking about bacteria, viruses, yeast, or bigger parasitic organisms like worms.

In my case, it has meant an enormous increase in fatigue. It is also affecting my ability to think and communicate clearly. My memory is an absolute crapshoot, with more trouble remembering comparatively recent events (in the last year) and not as much affect on older memories. The Lyme was doing all of those things to me before the antibiotics; the antibiotics just made things worse. Ugh.

On the other hand, there were some swift gains. The swelling in my hands went away very quickly, and my pain levels dropped substantially. Fortunately, the fatigue and brain side effects seem to be fading, so I am getting closer to my normal. This is definitely a good thing.

Now if only antibiotics didn’t tend to result in yeast infections for me. This long course of antibiotics has caused excruciating yeast infections. I didn’t know they COULD hurt like that; I had always kind of assumed that people who complained about pain during yeast infections just had low pain tolerance. I really should know better, being someone who lives with chronic pain. Ah well. At least I can just take a pill and it improves things enough to make the pain stop for a couple of weeks.

Anyhow, all of that is why I’ve been so very quiet lately. I’m having trouble making it to my classes (which meet for a total of about 8 hours a week), so things like blogging have been a little extraneous. Not to mention, it takes more brainpower for me to blog than it does for me to do more frivolous stuff like muck about on forums. I don’t know how ‘back’ I am yet, but I am trying!

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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*

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It looks like I’m on my way for an official diagnosis of rheumatoid arthritis.  (though I suppose the new news doesn’t knock out Sjogren’s, which is one of the other contenders, though my rheum thinks RA is more likely)

Today I had a musculoskeletal ultrasound.  I had worried that this would be very painful, as I remember how much pressure it took to do abdominal ultrasounds.  Fortunately, musculoskeletal ultrasounds require much, much less pressure.  Unfortunately, it was still enough to be quite uncomfortable.  My hands are still crankier than normal, 4 hours later.

The ultrasound determined that I had inflammation in all of the joints they looked at, though they could only see ‘flow’ in one of them.  ‘Flow’, in a musculoskeletal ultrasound, helps to make certain that you’re looking at active inflammation rather than scar tissue.  However, as all of my swelling has happened since March, they’re willing to accept that it’s extremely unlikely that I have scarring.  As far as the exam went, there was one piece of good news for me: no bone degradation/damage anywhere.  That’s a big deal with RA, as it is known for eventually damaging and deforming bones and joints if it is left unchecked.

I’m trying to think of this as a good thing.  The proof of inflammation, which I could easily see but my rheum wasn’t as certain about, should mean more effective treatment.  I desperately need this under better control – I’ve missed an intolerable number of classes, and if I continue at this rate, at least one of my professors will fail me for absences from class.  (Yeah, as an undergrad you can get a waiver of that sort of thing, but the American Bar Association has rules that have stood up to challenge in courts about attendance, and all schools that are ABA certified have to follow those rules)  And oh, the pain…the idea of being free of this pain seems almost like a dream.  Not to mention, my fiance and I want to get an engagement ring, and my fingers have been too swollen to make sure it fits for AGES now!

Anyhow, sorry for the silence lately.  This probably-RA has been causing me a lot of pain and keeping me lying down on my side, and I haven’t figured out a good way to use my computer from that position so I haven’t been on it much.

In other news, until I see my rheum (3 weeks from now), I’m switching back to one of the meds I tried and went on from.  Salsalate upset my stomach pretty badly, but it worked really well.  That’s better than what I’m dealing with now – Mobic isn’t working well and it’s giving me badly disrupted sleep with hyper-vivid dreams.

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Anyone who has any degree of PTSD will tell you this: you tell people you have it and at least half of the time they don’t take you seriously.  The same goes for phobias.

When I was 17, I got a twist in my intestines.  It sent me into a high fever (around 105), dehydrated me, and generally made me very ill.  I was somewhat delerious.  When they sent me to the ER, the ER nurse couldn’t get a line in.  He blew the vein on the back of my left hand so badly that the entire back of my hand was bruised, and the bruising showed through to my palm.  Then he tried to get one in my right thumb, and couldn’t find it, so he was sawing around and ripping up the back of my thumb trying to find it.  He gave up and when someone else came to try to put an IV in, I was curled up on the corner of the gurney screaming “no more”, with my fist cocked back to hit someone if they tried.  (They did a lot of things that night that honestly register as torturing me, like putting in a catheter and filling my bladder painfully, then doing an ultrasound on my very tender belly.)

Thursday night, we went into the ER because I had horrific abdominal pain.  As usual, they had trouble getting an IV into me, so they ended up putting the smaller size one into my hands after 3 failed attempts to put bigger ones in other places.

They wanted to do a CT of my abdomen with contrast, which requires the regular size IV because they flood the contrast into your body pretty fast.  After another several failed attempts (we were up to 7 at this point).  I told them that I was going to lose my shit and start freaking out if they tried to stick me again – I had done as much being poked as I was capable of without freaking out.  I asked them to sedate me before they tried again.

They said oh, we’ll do the next one guided by ultrasound.  It will be fast and easy.

I did, indeed, lose it.  Screaming and sobbing and shaking uncontrollably while they keep poking me and trying to get the IV in.  The guy doing the IV kept asking me if it hurt or if I was scared, and the answer was both, damn it!  I was freaking out badly enough that it was making everything hurt worse.

Eventually they did sedate me, and once it kicked in, we were able to get an IV in and I was able to stop freaking out so badly.

What I want to know is this:  why the hell couldn’t we have STARTED with that before the ultrasound-guided IV?  I told them I needed it.  If they had sedated me, it would have been a nothing-doing procedure that wouldn’t have triggered me.

Instead, I’ve now been triggered badly enough that they’re going to have to sedate me to get a FIRST stab at me next time.  It took me a decade to get to the point where I could accept IVs without getting worked up, and now…now I feel like I’m back to square one.

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