Moving along…

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.

Advertisement

Read Full Post »

Still Lyme-y

So I continue to be sick.

I finished my course of antibiotics some time ago. Within a week it was clear I was rebounding. I’ve been measuring my wrists and trying rings on my fingers, so I have objective measurements that show that the antibiotics helped and that things got worse when I was off of them. My GP is very, very popular, so it was hard to get in with him. I saw other people in his office, and they didn’t want to continue treating me with antibiotics. They wanted to send me off to specialists – first the rheumatologist, and if he wasn’t happy treating the probably-Lyme, then to Infectious Diseases. Certainly, they didn’t want me in their hands.

I finally got in to see my GP yesterday. His take on the situation is that either I have Lyme or I have some other systemic infection that is causing generalized inflammation. Regardless, the antibiotics bring down the inflammation and give me ENORMOUS benefits to my quality of life, so he is happy to continue treating me with them. Thank god. As of yesterday evening, I am back on the amoxicillin. We talked about options, and agreed that A) I am going to see an Infectious Diseases specialist and B) we are going to use an IV antibiotic. For treating Lyme, the oral drug of choice is doxycycline, which I react very, very badly to.* Because of that, I am taking the second line drug, amoxicillin. According to my GP, oral doxycycline can be as effective as the IV drugs (though that doesn’t match up with my recollection from researching this – my recollection is the IV drugs beat doxy), but amoxicillin cannot compete on the same level. That’s why he agreed to the IV antibiotics.

He’s still treating me relatively conservatively – not really high doses, not really long courses – but given all of my other conditions and my general sensitivity to medications, I think it’s for the best. If this round doesn’t take care of things, we’ll have to reconsider what we’re doing, but by then we’ll have a specialist on board to advise. I can only hope that the people in the Infectious Diseases department believe in Lyme as a devastating, long-term illness that can be hard to wipe out rather than the image some organizations present, where Lyme is supposed to be easily knocked out with a single, relatively short course of antibiotics. I do not want to continue living like this – I am in an enormous amount of pain, to the point where it’s hard to care about anything because existing hurts. Even lying on my very soft, comfortable bed hurts – if I lie on my side, my ribs and oblique muscles on the side that is up feel like they’re getting worked or stretched very hard and become painful (which makes me need to flip often), and if I lie on my back, my back and neck start complaining. And lying down is generally the most comfortable thing I can do. Right now, I need to wake up at least a half an hour before I need to start moving, so I can take a pill for the pain and wait for it to kick in. Best of all is when I wake up 2-3 hours before I need to get up: I can take the pain pill then, and go back to sleep. If I’m lucky, I’ll wake up again a little while before I have to start moving, because for some reason, the pain fades slowly if I am simply awake. I have no idea why, I only know how it works.

Blah. All of this pain, this frustration, and I have other things that need to be dealt with. I need to see my gastrointestinal specialist because my stomach has been very, very bothersome of late, and I need to talk to my sleep specialist because of a medication mix-up. I need to make an appointment with the Infectious Diseases person, who I am quite nervous about. I need to decide whether or not to cancel the rheumatologist appointment I have for Monday (my instinct is to cancel). I need x-rays and possibly an MRI done of my neck because I have pinched nerve symptoms; for that matter, the headache people wanted an MRI of my head, too, due to my headaches.

All of that, and I am sitting here in a cloud of smelly dog-fart, writing this post, because…well. Because I know people come here to read what it’s like to live my life, with my conditions and my service dog and my dreams and my fiance. Because on some level, this gives me a feeling of having some meaning, if only to get people to understand a bit more about what it’s like to be disabled but not in one of the ‘typical’ ways. (I tend to think of being blind, deaf, and having some form of paralysis as being the better understood forms of disability, though I know that even with those, the understanding of outsiders is horribly inaccurate.)

Nnf. This rambling, wandering, probably less-than-polite post is brought to you by probably-Lyme. (Why the hell is it always probably-something in my life?! I swear, not a single condition that I’ve got was easy to diagnose, and every stinking one of them was either missed or nearly missed by at least one medical professional before I found someone who got it, and then started getting the treatment I needed.) Anyhow, I think that’s intended to be and explanation, and perhaps something of an apology. I know I am neither at my best nor writing as often as I would like (by a long shot on the latter at least!). I am, nonetheless, here. That has to count for something.

*It starts with flushing in the face and on the chest, then moves to a kind of dazed confusion. Finally, my tongue and throat begin to swell, which is called anaphylaxis. It’s one of the most dangerous reactions to medications that exists because it will eventually make it impossible to breathe. Especially in someone with asthma (like me), there is potential for the swelling to go all the way down into the lungs, at which point you are DEAD – nothing they can do. Fortunately for me, anaphylaxis set in quite slowly, so they were able to get antihistamines and adrenaline into my system before my breathing was even labored.

Read Full Post »

Ack! Ouch!

I went off my most recent rheumatological med yesterday morning.

I guess I hadn’t realized how well it was working, because man am I ever in bad shape now.  I feel like I was trampled by a herd of horses.  My hands are in loads of pain, my back is agony, my feet are tender, and my knees rebel every time I even think about going upstairs.  I’m on percocet for the pain until I can get a hold of my rheum and ask for a new med.  My fingers are up 1/2 a ring size, and my wrists are about 15% larger than normal.  It hurts where my ribs meet my spine and where they meet my breastbone.  I’m actually nauseated from the pain.

I’m annoyed.  I auctioned a lace scarf almost two months ago to support some rebuilding efforts in Haiti via Random Acts, and I haven’t been able to finish it and send it to the (very understanding) buyer.  I really feel bad as the buyer had wanted to give it to her mother for her birthday last week.  And now it’s delayed until I can get a new med, AGAIN.

I’m very glad I dropped my research class, because all of these days I’ve lost to physically not being well this summer would have added up to a very poor project.  Certainly not anything worthy of my friend’s memory.

I’m frustrated that I’m having to try another new medication for the pain and swelling.  This makes three I’ve had to be pulled off (though one of those was only intended to be a short-term fix, but it didn’t survive even the amount of time we hoped it would).  Two went down to GI side-effects, and this one went down to fatigue and generalized muscle cramps.

I’m sick of this.  Sick of being sick with whatever it is hitting my joints, sick of the meds, sick of the side effects, sick of having to stop taking things that are working.

Read Full Post »

ARG – down it is.

Well, this newest med has to be stopped.  I got two of the ‘call your doctor immediately’ symptoms.  From what I’ve read, they aren’t immediately dangerous (that is, it’s not for example an allergic reaction or thrombosis) so I don’t need the ER, but I do need to stop the new rheumatological med.

I was sleeping an extra 3-4 hours a night and last night, I started getting muscle cramps everywhere.  I’m still feeling painfully sore from that, but it is improving.  Grr.  I hate the medi-go-round.  I guess I’ll be starting a new med when I talk to my rheumatologist again.

You just can’t win sometimes!

Read Full Post »

Up? Down?

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.

Read Full Post »

Mental health is difficult

I have bipolar disorder.  It’s a real challenge to live with, because you have to be eternally vigilant about your moods.  Am I sad because something went wrong, or am I getting depressed?  Am I awake at all hours because of my medications or because I’m manic?  Am I thin-skinned and easily hurt because I’m stressed out or is it a mood imbalance?  And I’m not the only one who has to watch out – the boyfriend has to, as well.  I tend to notice before he says anything, simply because I’ve lived with this for more than half of my life and he’s only dealt with it for 2 1/2 years.  Even if I notice something is off first, he makes a great sounding board, because I can ask him, “Do I seem to be more snappy and snarly lately?” or “Am I sleeping more than usual?”  He’s around and observant enough that he can venture an opinion on questions like that.

The boyfriend kind of got a crash-course in my disabilities not long after we met.  The same month we met, I had a professor do something incredibly hurtful, which sent me into a suicidal depression.  The boyfriend and a couple of friends had to babysit me, and other people had to portion my pills out into my weekly pillholder because I didn’t feel safe with the bottles.  (he also got a crash-course in some of the physical disabilities – I had invited him back to my place for tea and snuggling one night, and en route from where we’d been to my place, I had such a bad IBS attack that I lost control of my bowels and needed a shower immediately upon getting home.  When I explained what had happened, his only worry was that I’d feel too icky to want him to stay)  Anyhow, he ended up driving into the city several days a week to just sit with me and make sure I didn’t do anything to harm myself.  He also, by virtue of being an interesting and intelligent man, managed to distract me a fair amount when I needed it most.

Now, in addition to the lived experience of mental health being difficult, there’s the issue of medications.  I choose to be medicated because the benefits are greater than the costs for me.  That’s not true for all people.  It’s really bad form to assume that you know better how to treat someone’s illness (mental or otherwise) better than they and their doctors do.  For some people, that means medication, and for some, that means other things like lifestyle modification.  Unfortunately, the most common two forms of medical prostelytizing with mental illness that I’ve seen are the people who try to tell you whether or not you should be using medications at all.  Either mental illness is terribly dangerous and miserable and all people who have one really must be medicated, or people who use medication have been duped by Big Pharma into believing that medications are necessary.  I see those two arguments the most from people who don’t have mental illness – talk about ableism!  “I don’t have your mental health condition, but look, I know better than you or your doctor how you should treat it!”

We also get told we should be on a different medication.  We tend not to like that much – after all, we and our doctors have figured out together what works for us.  Why should we change, just because you believe that another pill will suit us better?  It doesn’t really matter if it’s from your own experience or from watching other people – we’re more likely to know the best medication for us than you are.  The medication you push may have horrible side effects for me, or it may not work well for me.  I may be happy enough with my current medication that I don’t want to take the risk of trying other medications.  When you’ve gone through enough failed medications, the idea of trying a new one can become…very anxiety-producing.

Which is exactly where I stand now.  I’ve put on some 50 lbs in the last 3 years.  My bipolar medication, Seroquel, is known for causing weight gain.  It’s also the only medication I’m taking that fits that profile that I have potentially viable alternatives for.  We also discovered accidentally that it seems to be suppressing my libido.  I forgot to schedule with my psych, so I ran out of Seroquel 3 days before I saw him.  Immediately, I was wanting to jump the boyfriend’s bones.  I’d thought that my lack of desire was because of some physical stuff going on, but I sure found out otherwise!  I also noticed, in the last few months, a lot of feeling…flat.  It’s kind of like having your emotions switch from color to black and white.  There’s just less range.  It feels kind of numb.  I think it’s because we added Cymbalta a few months ago.  Cymbalta is a psychoactive drug that also affects chronic pain, which is why we added it.  And for better or for worse, the Cymbalta makes enough difference to my daily pain levels that I don’t want to remove it if I can avoid it.  I may end up not having a choice.

So now I’m going to be slowly adding a new medication, Lamictal.  Lamictal has a relatively low incidence of side effects, but one of the potential side effects is very, very dangerous.  Lamictal can trigger a condition called Stevens-Johnson Syndrome, which can cause your skin to just…die.  So they start you on a very low dose and you watch very carefully for rashes and blistering in the mouth.  I was started on Lamictal once before, but I get little stress blisters in my mouth, so that psych (wanting to be cautious) stopped the medication and tried me on other things.  Other things that turned out to be positively horrible, one of which caused the worst depression of my life.  But that’s neither here nor there.

Starting a new mental health drug is really, really scary because you don’t know what will happen.  Will it work?  Will it make the depression worse?  The mania?  Will it deaden my emotions and leave me feeling numb?  Will it affect my ability to think?  Will it kill off my libido?  Will it make me feel like the world is at a distance from me?  Will it have physical side effects, like headaches and nausea?  And of course, some mental health drugs have truely scary side effects, like Stevens-Johnson Syndrome and potentially permanent tics or spasticity.

Knowing the risks, you have to wonder a little sometimes if the mental illness is really so bad that it’s worth it.  It’s a decision each person has to make for his or her self.  For me…for me, untreated, I don’t do so well.  I have periods of such severe depression I can’t get out of bed, and I have periods of mania so bad that I can barely resist the urge to just spin the wheel of my car and see what happens.  My bipolar is something that I can’t manage without medication to rely on.  I know for other people, medication isn’t a good choice, but for me, for my body and my mental illness, living without it is the greater evil.

Read Full Post »

A ‘duh’ moment

So, between a friend and my boyfriend, I’ve had a pretty good ‘duh’ moment.

I mentioned before that because of the way my insurance is handling things, I’ve had to go on a pain medication patch twice as strong as what I was on before. Now, these patches look a little bit like the clear plastic nicotine patches for someone trying to quit smoking.

So my friend today asked, why don’t I cut a quarter of it off, so that I’m only going up in dose by half as much?

Wow, thought I. This is an incredibly simple fix.

When I mentioned this to my boyfriend, he asked why I couldn’t just cut the patch in half and apply half of one every 2 days – effectively doing the same as what my doctors and I had originally wanted to do.

Oh. Well. DUH. Why on earth not?! We’ll have to test it out and see how it works, but as long as the glue doesn’t develop a problem if it’s opened but not applied until 2 days later, this is a perfect solution. I get the level of the drug I actually need, so that the pain is minimized but I’m not dopey, and I get to change the patch often enough that it doesn’t wear off before my next patch change.

So, the insurance may not be helpful, but a little bit of ingenuity and I’ll be getting what we wanted all along. Yay for ingenuity!

Read Full Post »