Archive for July, 2011

(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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One of the things that comes with having chronic illnesses is new medications.  Getting a new medication is this awful mixture of hope and fear.

You hope it works.  You really do, because you’re sick of the pain and other symptoms.  At the same time, you’re often getting a new medication because either an old one stopped working or because the side-effects were intolerable, and you worry that the new medication will be more of the same.

I’m starting a new medication for the maybe-it’s-RA that has been plaguing me for a while.  We discovered today that it may have moved into my spine; I’ve had pain there for a while, which a horrid nurse practitioner dismissed as being because I’m fat without even looking at it.  I mentioned it to my rheumy today because it seems to be limited to my spine itself and it doesn’t respond to stretching or exercises, only to heat (well, and it gets cranky when I sit up or stay in the same position for long).  My hands, wrists, feet, and ankles are all crying out right now, and my left knee has warned me that it is displeased with me.

So you see, on the one hand, I am desperate for something to help with this.

On the other hand, there’s a reason I stopped the other med.  It worked quite well, and the reduction of pain was astonishing.  But it had side effects I couldn’t tolerate.  I already have stomach problems, and it exascerbated them.  My stomach hurt terribly, and I was nauseated and had heartburn.  I could hardly eat, and felt quite miserable all the time.  I don’t want to go through that again – my stomach is finally behaving itself and I’d rather let it be!  But I need relief from the maybe-it’s-RA, especially as that can do permanent damage if it’s not kept in check.

So I sit here, staring at the bottle and wondering, will this work as well as the last one?  Will it have fewer side effects?  I can only hope.

I go through this every time I add a new medication, hoping it’s effective and that the side effects are tolerable.  Can you imagine doing that over and over and over?  As each new condition rears its head, as each medication loses effectiveness or develops intolerable side effects, a new medication has to be attempted.

Wish me luck.

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Tough Decision

The Dean of Students has offered me a tough decision: do I ask for a withdrawal from my research, or do I ask for another extention?  Either way it would need to be approved by my supervising professor, and I’m honestly not sure which is the better move.  I think he would probably approve either.

On the one hand, I know my friend would want very badly for this work to continue.  On the other…on the other, I do not know if I can do it, or when I will be able to.

What would you do?

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Please forgive me

I’m in mourning.  Please forgive me if the next Assistance Dog Blog Carnival goes up late.

I found out today that one of my friends committed suicide.  He had been struggling with serious medical conditions that caused him a great deal of pain and a fair amount of embarassment, and he had depression.  My heart hurts, and I feel almost ashamed, because I knew he was in a bad place and I didn’t do enough to help pull him out.  I knew that he had fallen out with the three people who he could bare every corner of his heart to, and I should have pushed him more to talk to me when he seemed reluctant.  He needed someone, and I don’t think I was there enough.  His marriage was on the rocks (mostly due to miscommunications), and a very close friend of his had stopped talking to him.  Another had committed suicide a couple years ago, which left a profound scar on my friend.  He was finishing up his PhD dissertation, and panicking a bit about the closeness of the deadline and the fact that there could be no further extentions..

I cannot convey to you how brilliant he was.  At 21, he was revolutionizing cyberprivacy and setting up one of the big conferences for the cyberprivacy community.

To focus on his intelligence, though, is to speak to one of the least parts of him.  He had an amazing well of caring for his friends, and he put an unbelievable amount of effort into helping them.  When my horrid roommate kicked me out in December of 2008, he found a friend who was local to here who could rent me a room until I got my feet back under me.  He also convinced his father to drive me the 40 miles to the nearby Big City (where I live now) to get to a doctor’s appointment because I was not sure I would be able to drive.  When a friend of a friend was dying and her child was likely to end up in the hands of her abusive partner, he rallied people to do research to figure out a way to help her keep custody, and helped find a lawyer and helped with filing the papers and so on.  When his wife was accused of deserting (she was national guard), he spoke so eloquently on her behalf that the state she served in was deluged with hundreds of letters supporting her need to stay out of jail so she could care for her husband.  (We won, by the way – they dropped all charges and discharged her from the military).  He found people jobs, he helped people get their feet in the door, and he offered to help those he loved with almost complete disregard for his own wellbeing.

I will not pretend he was perfect.  He had a temper, a sharp tongue, and his depression made him force people away from him sometimes.  But he was my friend, and a good and true friend to me.  He was one of only a few people I could really talk about disability with when I first got sick; one of the only people from my ‘old life’ who completely got it and didn’t require in-depth conversations to understand what I had lost and how I struggled.

I believe the world is a dimmer place without you, my dear friend.  I know you believed you were too damaged to have healthy romantic relationships; I know that you were deeply suspicious that people you let in might turn and stab you in the back.  But I also know you were kind and generous, and caring.  You were gentle when I needed someone to get it, and you traded somewhat bitter, sarcastic remarks with me about what it’s like to live like this.

I will miss you.  I wish you had not died so far away; a trip to Europe to see you at rest is not something in the cards right now.  Perhaps someday, when we vacation in Europe, I will be able to make a stop at your grave.  If I do, I shall bring seeds of your favorite plants to keep you company, especially a datura plant.

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These times almost always come when a medical professional has declined to recognize that I DO know what’s going on with my body, something unusual is happening, and I want it to be taken care of.

Now, as I think I mentioned in my last post, every time I get the flu, I experience it as a GI bug.  Now, you add POTS into the mix, and you have someone who is easily dehydrated and who is hit harder by dehydration (and the loss of electrolytes that tends to come with it) than the average person.  Just reading that sentence, I think you can imagine that this is not a good combination of things.

The ONLY reason I went to the doctor’s office today is because my GP has told me that when this happens, I need to get in and get fluids so we can prevent ER trips that otherwise tend to result from this sort of thing.  Even if an ER trip might not have ended up necessary, having fluids added to my system helps me bounce back a lot faster – I mean like 2-3 days faster, if not more.

Because I had to make a same-day appointment, I couldn’t get in with my GP.  I saw a nurse practitioner in the same-day area.  I’ve seen this same NP before, and it was an…underwhelming experience.  I had gone in because I had back pain in an area where I don’t usually have back pain.  He informed me that my back pain was because of my ‘central obesity’ – in other words, ‘your back hurts because you’re fat’.  Nevermind that I’ve had back pain issues since I was 15 and weighed 85 lbs.  (No, I didn’t have an eating disorder, I’m small-boned everywhere but my shoulders, and I was mildly athletic back then.)

So when I saw him walk in, my heart sank.

I learned all sorts of fun things today.  Apparently, when you’re 27, 100.0 doesn’t count as a fever – you need 100.5.  And that part of the doctor’s office doesn’t do IV fluids.  Oh, and neither would the ER, if I went there (All the more fun because I’ve gone in to the ER dehydrated a bit further than this and they…give me IV fluids and an IV anti-emetic).  And I wasn’t ‘really’ dehydrated because my heartrate wasn’t elevated and my blood pressure was only a little low.  Oh, and Sharon, just so you know, the NP thinks a Lyme titer on me is a waste of time because I didn’t get a bulls-eye rash (though I was insistent enough about it that he gave in – I didn’t bother mentioning that only 70% of people with Lyme’s get that rash, I just kept on about all of the other tests being negative except one for inflammation and I WANTED it, damn it!).

I’m mad.  I waited over an hour to see him.  He didn’t help me the way my GP said they would be able to help me.  He didn’t even really LISTEN to me.  I think he’s one of those people who went into medicine to be Right, not to help people.  I spent energy and effort I didn’t really have because I believed I could get help, and all I got for my effort was a parking ticket because they weren’t done with me until 1 hour 45 minutes past my appointment time.

I don’t feel good, and I’m sick, and I know the only thing that has consistently worked to make me feel less sick when I’m like this is IV fluids, and I couldn’t get them.  I would have been half-tempted to drop myself off at the ER except I was already at the end of what I could do, and the ER waiting room was PACKED.  (I know this because my roommate got herself sent to the ER today, for what turned out to be a hellish migraine, and I had brought some books to give her in case she was going to be stuck there for a long time.  Said roommate is awesome because even though she was in the ER for 6 hours, she stopped on the way home and got me a bottle of Gatorade.)

The fiance came home early even though it might have meant more traffic because on top of everything else, my normally very responsible aide had a bit too much to drink last night and was too hungover to come in.  We lucked out and traffic wasn’t too bad (I guess because everyone else headed out early for the holiday weekend?).  But yeah, I’m sick and spent energy that could have gone towards continuing to get well on a wild goose chase.

Perhaps the worst part of all is knowing that if I had been able to get in to see my GP, I have no doubts he would have given me the IV fluids.  And the lyme titer test, without a fight.

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