Well, at least there’s news, at last?

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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Test One-two-three (anything but that!)

(Why yes, that title is a Rent reference.  I ❤ the show and the movie)

I have medical testing coming up that I am not looking forward to – some because I think it will be unpleasant, some because there are no good answers.

The one I expect to be painful is an ultrasound of my hands.  I remember how firmly they press on say your abdomen for ultrasound imaging; that kind of pressure on my hands would be AGONY.  I suppose there aren’t really good answers on this test, now that  I think about it.  Either they will find inflammation that backs up the theory that I have something like rheumatoid arthritis (RA), or they’ll decide there isn’t inflammation there and we don’t know why my hands hurt nor why they look swollen.

I’m supposed to have an MRI of my brain done, because my former headache specialist worried that I might have pockets of fluid building up in my brain, due to the kind fo headaches I get on a near-daily basis now.  Again, there aren’t really any good answers – if nothing shows, then we have to keep investigating to see what is causing the headaches.  If it does show, that means brain surgery.  And oh yeah, having a MRI is no walk in the park.  This one will be with and without contrast, so they will fix my head in a specialized vice that partially blocks my vision, put me head-first into a long narrow tube I barely fit in, and then there’s all the noise and the vibration (which hurts a lot!).  As if that wasn’t bad enough, they’ll pull me about 2/3 of the way out so they can put in an IV and inject in the contrast material, then put me back in the tube.  I’m mildly claustrophobic, and both the head vice thing and taking me out and putting me back in considerably aggrivate the way I feel about it.

Then there’s a rotational CT scan of my neck and where the head meets the neck.  I have symptoms that could match up to craniocervical instability (CCI), which is vastly more likely in people who have connective tissue disorders like mine.  If I don’t have CCI, then we have a question about what is causing a lot of symptoms that include pinched nerve symptoms in both my arms.  If I do have it…whoa.  Surgery, but that surgery might take care of a slew of issues that have affected me over the last 4 years.  However, I won’t be able to get the botox injections into my neck that they think would stop my migraines because my head would already be unstable enough on my neck that they would be worried about destabilizing it more.  The test itself isn’t too onerous, at least – I turn my head all the way to one side and go through a mechanical doughnut rather quickly, then turn my head to the other side and go through it again.

I also need an MRI of my mid-back to see if the maybe-RA is attacking my spine or if the pain is coming from something else.  This is another relatively painless test, but the results are something I’m not sure I want to know.  If it is the maybe-RA, I suppose they’ll treat more aggressively.  If it isn’t…well.  We have to figure out what’s causing new back pain, how and why, because this back pain is neither normal nor tolerable for me.

I don’t really know what I want at this point.  I am tired of feeling like crap, so I would like to feel less like crap, but I don’t know what test results or medications will offer that solution.  In the meanwhile, I guess I keep on keepin’ on.  It starts to feel a bit surreal sometimes, and other times it feels like I keep going out of habit or lack of palatable alternatives.

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Heavy sedation feels like whoa

So, I had a procedure today to determine what’s going on with my GI.  The news is good; with some minor adjustments in diet and the addition of a medication that binds liquid, it should be totally managable.  I’ve been on that medication before with no side effects, so this is about 99% positive.  (The only real downside is that I’m going to have to pay a lot more attention to the way my GI reacts to things, and may have to be more careful about substances like caffeine)

But to get to the good news, I had to make it through the procedure.  They gave me a combination of an opiate (to minimize ‘discomfort’ and sedate somewhat) and versed (to borrow my doctor’s words, “to make you forget”).  I remember things clearly up until the second dose of versed…and then I woke up in the recovery area.  I’ve heard of people having all kinds of bad experiences on versed, but this is the second time I was dosed with it, and all things being equal, it wasn’t all that nasty for me.  (Though I did have a reaction to something the first time that had me throwing up for a couple of days, I think that may have been my oh-so-delicate system’s response to the physical stuff they were doing, not the drug.)  I apparently take rather a lot to be knocked out – two to four times the standard initial dose.

There was some minor stress and confusion today.  I didn’t think about the fact that I was going to be knocked out and someone else was needed to mind poor Hudson.  The fiance had headed out for a walk and I couldn’t get him on his cellphone.  For a while it looked like one of the nurses was going to hang on to Hudson in the room with me, which would have worked out okay.  I was really impressed that no one seemed upset or annoyed or difficult about Hudson, even though I’d managed to make quite an unexpected imposition.  Granted, this hospital has always been totally awesome about the service dog.*  Their only concern was making sure that everything was handled in a way that kept the pooch comfortable, and the nurses were willing to totally go out of their way to take care of us – they were great when I explained minimizing interaction with him for the benefit of our partnership, which I’ve found a lot of dog-friendly places have issue with, but not here.  In the end, though, my doctor was running so late that the particular nurse who had volunteered to hang on to Hudson was going to be off shift.  They discovered that my fiance was in the waiting room, though, so he was able to take Hudson. 

Poor fiance was worried that it might be like that instance last summer when the ER barred Hudson, but it was really just a case of trying to keep the stress on the dog the lowest.  At least if he was with the fiance, he was being left with someone familiar to him, and his second favorite person in the world.  Apparently Hudson periodically whined while I was away – poor pooch.  That seems to be his typical response, though.  He doesn’t like being away from me.  I think sometimes he worries about what might happen while he’s not there to watch over me.  The fiance occasionally petted him when he whined, and apparently Hudson took that as a sign that they were going to me, because he stood up looking at the door he’d gone through when the fiance took him back to the waiting room.

Anyhow, so everything went well.  We grabbed an early dinner and had a brief stop in a store I enjoy to get a treat for later.  We got home and…well, they warn you that you aren’t to drive or make major life or business decisions, and I can quite tell why.  I’ve felt kind of…floaty…ever since, and I think I got dosed with the medications about 5 1/2 hours ago.  My head is fuzzy, and it takes longer for things to make sense than usual.  And oh, the bed felt so good to lie down in.  I spent a few hours curled up in bed reading mostly because bed felt so GOOD.  Just comforting and the right temperature and soft and…nice.  (I’m spoiled and have very nice sheets and a thick memory foam topper, oh yes I do.  I love them very, very, very much.)

I’m definitely not entirely back to myself.  I’m…here, but I’m drugged.  Not in an entirely unpleasant way, but everything feels just a little bit surreal.

…I probably should have put off writing the IT guy about my request for a listserv for a project until tomorrow, but at least I had the fiance read it first.  Oh well.  Worst he can say is no, I guess, and then a friend of mine has said he’ll find someone to host it if the school won’t.

*Almost all of my doctors are at this hospital, and the worst thing anyone has ever said about him is either that he startled them or that he’s in the way and needs to move to a different spot in the room.  They are always friendly and positive about his presence, and never once has anyone suggested that I shouldn’t have him with me.  Today was no exception – everyone loved him and wanted to help and even listened when I explained the ‘can not pet or interact’ rules, much as they wanted to love on him.  The way the hospital staff have responded to Hudson is part of why I ❤ that hospital and have everything there, even though it’s halfway across town.  I go where I am welcomed, you know?  It also helps that they consistently treat me as a person, not just a medical question or a disability.  The way this hospital acts?  This is real access, this is real accomodation.  This is me being a person with dignity and rights and intelligence and value and individuality in their eyes.

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I’m sorry, we’re all out of good answers

Or at least, that’s what this week has felt like.

I had three appointments this week: one with my GI for new symptoms, one with a rheumatologist for a collection of new symptoms I mentioned in a previous post, and one with the headache center because my headaches are getting worse and I’m willing to try a preventative again.  All three appointments concluded in ways that I have to admit I’m far from thrilled with.

My new GI symptoms were lower GI bleeding and increased GI pain.  Now, I’ve been diagnosed with IBS, so I’m used to a certain level of GI pain, but it’s usually because of spasms and I have medication to treat that.  This pain doesn’t respond to those pills, and GI bleeding is always a concerning symptom.  There are two basic possibilities when you’re dealing with lower GI bleeding: hemmorrhoids and inflammatory disorders.  While hemmorhoids are a vile thing to consider, they would definitely be the lesser evil here.  One or two treatments could get rid of them, and while there’s a chance of recurrence, it’s not a huge lifetime thing.  Inflammatory disorders are a whole other boat.  Both Inflammatory Bowel Disorder and Crohn’s Syndrome are auto-immune issues, which means that your own immune system is attacking your GI.  We’re talking medication probably for life and the possibility of major surgeries to remove parts of the GI system that get too badly damaged.  Not pretty.  Both are currently on the table, and will remain that way until I get a sigmoidoscopy done next month.  I’m sure you can imagine, with GI pain, how much I want to have a camera shoved up my derriere.  Especially since the last time, I ended up in the ER a few days later with one of the few episodes 10 out of 10 pain I’ve ever had.  Ugh.

The rheumatologist appointment wasn’t a whole lot better.  I’ve seen this rheumatologist before; in the summer of 2008, he was the first doctor who suggested I had Ehlers-Danlos Syndrome.  He struck me as a kind man and a good diagnostician, so when I needed to see a rheumatologist, I asked for him by name.  We talked about symptoms, and he could see the swelling in my wrists even if he couldn’t see it in my fingers (because I have exceptionally slender fingers, they look about normal when swollen).  I didn’t like his answers, either.  He said that there were a couple of possibilities that sprang to mind.  Because of the GI symptoms under investigation, he said that I could have Inflammatory Bowel Disorder or Crohn’s, which can cause generalized arthritis-like inflammation.  I could also have a sero-negative rheumatological disorder like rheumatoid arthritis or Sjogren’s; the main confirmation for either of those would be a negative diagnosis for bowel issues and a positive reaction to medications that treat them.  In any case, he suspects something I’ll be dealing with for the rest of my life.  Joy.

And finally, on to the headache specialist.  I stopped seeing them a year ago because I tried two different preventative medications and reacted badly to both – sleeping 16-18 hours a day, having trouble doing simple things like feeding myself because I’d get sidetracked somewhere in the process (usually after putting food into the microwave).  Thing is, the headaches have gotten worse again.  I’m now having positional headaches, which scares the crap out of me because I know that can be a sign of Chiari, which is way more common in EDSers than in the general population.  It can also be a sign that the cervical settling I was diagnosed with a bit over 2 years ago is causing problems.  Well, the headache specialist threw in a new possibility – he said I could have pockets of cerebro-spinal fluid developing in my brain, which apparently is also more common with EDSers than the general population.  Aw fuck.  If that’s the case, they have to go in and patch them because they can cause brain damage if left unchecked.  Gah.  Because of this possibility, I have to have a MRI done, with and without contrast.  That’s pretty much torture to me.  I’m mildly claustrophobic, and having my head bound in place and then being slid into a tube that barely has enough room to fit me is pretty horrific.  Worse yet, to do a with-and-without contrast, they have to do one set of scans, bring you back out so they can inject you with contrast, and then put you back in.  It is one thing to deal with being put in once; something about being pulled out and put back in heightens the sensation of being trapped enormously for me.  And of course, for an MRI, you have to stay perfectly still.

They also are having a little trouble with preventatives because of my other conditions.  Migraine preventatives tend to be drugs that were originally intended for other uses that were discovered to have headache-preventing qualities.  They fall into 3 major groups: anti-depressants, anti-seizure meds, and blood pressure meds.  They don’t want to give me an anti-depressant because I’m bipolar.  I’ve reacted badly to 3 anti-seizure meds, so we don’t want to try that route again – no sense beating a dead horse.  Which leaves blood pressure meds…which have the potential of making my POTS worse.  I guess that’s less scary than messing with things that can affect bipolarism because I have a better chance of catching POTS symptoms before something bad happens, not to mention that the gap between theraputic for headaches and theraputic for the original use is wider for blood pressure meds.  That is to say, the level of anti-depressants needed to prevent migraines is closer to the level needed to treat depression than the level of blood pressure meds to prevent migraines is to the level needed to treat high blood pressure.  The really bad news is that they think the main medication I’m on to manage my generalized body pain may be making my headaches worse.  They want me to think about coming off of it.  The idea of coming off of the medication that makes the pain that encompasses my whole body tolerable is enough to make me want to scream.  I have to sit here and try to figure out which is worse: the possibility that my headaches will continue to get worse, or what it will feel like to come off the medication.  Pain is a funny thing; being on opioids is known to make pain worse in some people, so it might not be as bad as I think.  Except I remember what it was like before I got on the opioid medication.  I spent all of my time either at school, doing homework, or asleep, because being awake was too damn painful.  I don’t want to go back to that – it’s a frightening possibility.

Which is to say, this week was full of catostrophic SUCK.  I got answers I didn’t want at every turn.  It sucks up your energy, dealing with stuff like this, as if I didn’t have all kinds of other things eating up my energy.  I’m exhausted and sad and frustrated and angry, and feeling very vulnerable right now.  I feel like I am walking on thin ice, and anything could send me plummeting into the deadly cold water beneath.

In some different news, I am not the only person who has been dealing with sucky stuff lately.  A friend of a friend has had a crisis happen where she cannot get the treatment she needs to be as healthy and well as she can be.  My friend, Sharon of aftergadget.wordpress.com, organized an auction to help out.  There are a variety of things included in the auction, from artwork to services.  Please check the auction out at http://heathersauction.blogspot.com/!

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Pain attack

I hope you will all forgive me if I have been quiet or not quite seemed myself lately.  You see, I am living with a pain attack.  My doctor and I are in the process of figuring out what it is.  So far, we have eliminated thyroid, blood sugar, infection, and cancer.  Still potentially on the table is auto-immune disorders, though I would have to be what they call subclinical (that is, the blood tests do not show certain types of activities).  My personal pet theory is Sjogren’s syndrome, which is a type of auto-immune disorder.

It hurts.  I type in short bursts because it quickly becomes too painful for me to type.  It makes me very grateful that I type extraordinarily quickly, else I fear I would never get a chance to say anything.  My hands feel like someone stepped on them, or like I missed a nail and hit myself with the hammer, that kind of intense but dull aching.  My feet are so tender that some nights, standing long enough to feed Hudson is a torment, with much the same kind of pain..  I am swollen and having pins-and-needles sensations in my hands and feet, and sometimes into the forearms and the lower legs.  I think it is also attacking my bad knee and bad hip.  My hip feels like there is a jagged shard of pain stabbed into me, and not only does it hurt where it is lodged, the pain is seeping into the general vicinity.

I am upset, and a little scared.  There are other symptoms that may be related that started a little earlier.  My memory is terribly interrupted, and I cannot remember things that I normally would remember with great clarity.  My mouth and eyes are painfully dry, but my throat is full of thick mucus, which sometimes gives me a little trouble with breathing.  I am having lower GI pain and other troubles that may be related to all of this.

In three weeks I see a rheumatologist.  In the meantime, I will be talking to my doctor in the hopes of trying something like steroids in the short term to help with all of this pain.

I suppose what this all adds up to is that I feel lousy and I hope you will all keep me in your thoughts.

~Kali

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(Not) coping

Wednesday, Sept. 23-

I didn’t make it in to school today. Today, I’m a pinball machine that has been bumped off balance one too many times, eyes blinking ‘Tilt! Tilt! Tilt!’

It’s something you can’t make a habit of, missing school – especially in law school, where a huge part of what you learn, you learn in class. But sometimes, life catches up with you a little too hard.

It is one thing to know you are having a test done to discover whether you have an auto-immune problem with your thyroid. It is, as it turns out, entirely another to actually be having it done. In half an hour, I leave to go drink some radioactive iodine. Sounds yummy, doesn’t it? They scan my thyroid, and I leave, and come back to the house that is empty because the boyfriend spends two days a week at his school, 90 minutes away, where he works as a tutor (which pays his tuition and gives him a stipend to live on). I do so hate coming home to the empty house.

And really, it’s not just the thyroid. It’s the headaches, too. You see, in the last month, I’ve had out of control migraines. Headaches bad enough that my medications don’t begin to tame them, far more frequent than they’ve ever been. We don’t know why there was this sudden shift in activity. Counting yesterday, I’ve had 3 migraines in the space of a week. It’s absurd, disruptive, frustrating, and frightening. My disability level is bad enough without losing 3 days a week to migraines.

I ended up in the ER on Friday because of the most severe migraine I’ve ever had, and now they think things are at a new level: ‘complex’ migraines. Thursday and Friday, I kept having minor problems with my vision – blurring, moments of double vision, complete loss of depth perception from time to time. They tell me that means there’s some neurological involvement with the migraines, which isn’t good news. Not that it’ll do any permanent damage, just that the migraines have the potential to be that much more debilitating. It was also the most painful my head has ever been, so severe that the first day of the migraine, I came home from class and took my migraine medications, and even though they didn’t work, it didn’t occur to me to go to the hospital.

___

At that point, I had to leave to make it to my thyroid testing. I found out, when I was there, that whether my condition was autoimmune or not, it would be treated just as it has always been treated – a dose of synthroid to balance things. Nothing more, nothing less. It was, in its way, a very soothing answer. There would be no new treatment, nothing to change the balance of the way things have been with my thyroid for the past 6 years. It was a little uncomfortable, the thought that if your body is attacking your thyroid, they don’t do anything about it, but I suppose it is what it is.

I saw my doctor on Friday, and he went over the test – he said that I have nodules in my thyroid, which are affecting its productivity, but that it’s not auto-immune. A good thing, he said, as it meant no new treatment and no surgery. Eep! Totally not what they told me would happen for AI thyroid problems on Wednesday, but I suppose it doesn’t matter since I don’t need it.

I’m finishing this entry now, on Sunday, because it felt like something worth posting.

I suppose it gives a little view into the headspace of living with this boggling array of disabilities and health problems. It’s a shade embarassing to admit I have days like that, but well…I do. I think that, too, is part of living with all of this. Sometimes, it just overwhelms you into shutting off for a bit.

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Not the next entry I intended

Well, I’d meant to make my next entry the second half of my Access and Accomodation musings.

Instead, I’ve gotten another piece of very rough news, so bear with me here a little.

I recieved the report from the geneticist who diagnosed me yesterday. It had some…unexpected things in it, none of which were good.

There were the little things that weren’t good – need to get my hearing checked because I wasn’t hearing things evenly on both sides, signs of gingivitis in my mouth, that sort of thing.

And then there was the big one.

While I’ve been diagnosed with EDS, I’ve been diagnosed with what is considered one of the relatively more ‘benign’ varieties. You see, while classical and hypermobility types of EDS will destroy your joints pretty thoroughly, and cause a variety of (relatively) minor problems with your organs, not to mention the…interesting…scars and stretch marks all over, they don’t have the high potential for fatality that vascular type has.

But now I need to be tested for vascular type. Or rather, my grandfather needs to be, because if I have vascular type, it comes through him, and all of my aunts and uncles need to be tested. If he won’t do it, apparently, I really need to.

I’m upset. I mean, I mentioned my suspicions of possible vascular type in the appointment, but really felt like the answer was that it wasn’t likely. I now know that I have markers that match up with vascular type – I have grey scelera (that’d be the whites of the eyes) and my most profoundly hypermobile joints are the small joints of the hands/fingers. Both of those match up with vascular type. I hadn’t thought this seemed likely, and yet…well, here we are, facing expensive genetic sequencing. The vascular type is the only one for which there is a conclusive genetic test.

The life expectancy of someone with vascular type is on average 50 years.

I’m sure you can imagine, my boyfriend and I are devastated. I haven’t told my parents what the implications are yet, because frankly until we know I have it, I’m not willing to do that to them.

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