To chemo or not to chemo

Yesterday I read this piece written by a fellow autoimmuner, Ashley, about her reluctance to call her rheumatoid arthritis drugs "chemotherapy." It was interesting timing for me, as I'd recently had a conversation where I'd referred to my meds as chemo and then immediately regretted using the term. Once it was out of my mouth, I realised it sounded far more melodramatic than I'd meant it too.

Ashley's article gave me some things to think about. Firstly, I'm truly sorry if I have offended anyone by using the term. I was in no way intending to "compete" or compare myself to cancer patients. My mother died from cancer a few years ago, and during her journey went through chemotherapy. I do understand that cancer and chemotherapy chemotherapy are horrible experiences, and I mean no disrespect to anyone who's gone through that by using the same name for my medications. 

I don't always refer to my injection as chemo. In the conversation I mentioned above, I'd been about to say I was going home to "shoot up," then realised that might be a bit inappropriate, so changed tack at the last minute and said I was going home to "do my chemo" instead. I usually just call my medications pills and injections, unless someone specifically asks what my drugs are in which case I explain that the injection is a low-dose form of chemotherapy, one lot of the pills are an anti-malarial drug (I actually took this same medication as a malaria-preventative at times as a child) and that I'm not quite sure what the third lupus med I take is. I also explain that the point of all of them is to squash down my immune system, so it won't be able to attack my own cells anymore.

So why do I use the term "chemo" at all?

Ashley suggests that for some people this might be a way to draw pity, or to misrepresent the situation to make things seem worse than they actually are. I don't think this is the case for me. I don't like having people pity me, and to avoid it I usually make jokes about my situation. This works pretty well, except for the fact that it does then make it harder to communicate the more serious aspects of these diseases when necessary. I find I can't tell someone something serious without wanting to follow it up with something funny or to cut the conversation off completely. As soon as I see people making what I call Pity Faces, I want to make the conversation lighter because it's hard enough to deal with my own feelings about this stuff without making other people feel upset as well.

In a way, using the word "chemo" makes it easier for me to communicate these serious aspects and answer people's questions without having to actually have the conversation properly. Some examples of this are:

Question: Why are you vomiting? Why would you take a medication that makes you so sick? Isn't this supposed to be making you better?
Answer: Well... it's chemo. (Also, stop asking me asking me complicated questions while I'm vomiting!)

Most people think of medication as something that makes you feel better, so it's hard for them to understand taking something that at times makes you feel worse. Explaining that it's a low-dose chemotherapy helps people understand that while this might make me very sick for a few hours, it is ultimately still the thing keeping me healthy. No it doesn't make me as sick as someone receiving chemotherapy for cancer - it is only a fraction of dose - and no I'm not the same type of sick as a someone with cancer. But it is the same concept.

Question: Why did you just back away when I tried to hug you? I've only got a cold. Are you germ-phobic or something? (coupled with sad/offended look)
Answer: Sorry, it's just that I'm on chemo, so if I get a cold... I can get really sick.

I hate offending people, and, depending on who you are to me, I probably would hug you back if you weren't sick. But when you're on any kind of immunosuppressant medication, getting sick - even just with a cold - does actually become a big deal. Something I've learnt the hard way after many respiratory infections! I used to try and explain to people that my immune system was squashed down by the medications I'm taking and therefore I can't fight off bugs. So, if they have a cold or the flu, I'd prefer to keep a little more distance than usual just for now. But by the time I'd got through that they'd either already hugged me before I could stop them or taken umbrage at my refusal. I also found the explanation didn't seem to stick. The next time someone was sick, we'd have to have the whole conversation again. Using the term chemo seemed to clarify this with people. Now, after I've explained once, people usually remember and automatically give me a bit more space if they're not well.

Question: Why aren't you coming out tonight? You seem fine.
Answer: Yes, I'm fine right now, but I'm doing my chemo tonight.

Not everyone gets side effects from autoimmune arthritis meds, but unfortunately I am one of the ones that do. I got very bad side effects on the tablet form because of the inflammation in my stomach, which is why I'm on injections instead. At lower doses, I didn't have too many problems, but now I'm on a higher dose I do get sometimes get nausea/vomiting, the shakes, bad headaches, or pass out, on injection night. It can mean that in a short space of time, I go from being fine to really not. So I don't go out and don't let people come over on the night I do it. I'm also a bit careful about what I plan for the next morning as if I do it too late in the evening I'm still sick the next day. I don't want people to feel sorry for me about this, but I do want them to understand that I'm not just ditching them - I would like to be there for whatever it is they're wanting me to do, I'd just also like to save our friendship from ending with me spewing on them! 

Question: Why aren't you drinking? One drink won't hurt. Oh, go on...
Answer: I can't, I'm on chemo.

To be clear, I only end up saying this if people won't accept "No, I really don't want a drink" and continue to press the issue. This one is complicated, because there are a lot of reasons I don't drink and blaming it all on my meds a little misleading, unlike the other examples I've used here which are honest answers. I have had problems with both my liver and kidney function in the past, because of my medications. These are both okay at the moment, but the tests do still fluctuate a little. When I was still drinking alcohol occasionally, I did notice a correlation between when I had a drink and when my tests results went out. The other major reason I don't drink is that I get uncontrollable muscle spasms and tremors when I do, which are inconvenient and distressing for everyone involved. This isn't something that people can be expected to comprehend, unless they've seen it, so putting it all down to "being on chemo" is the easiest way to get the message that I can't drink, and won't change my mind, across succinctly.    

 As I said, Ashley's article has given me a lot to think about. Again, I am very sorry if my using the term in this way has upset anyone. This wasn't my intention, I just hadn't thought through how it might feel for some people hearing a word like "chemo," when it's not fully explained. I'm going to give some consideration to whether I continue to use it, or whether it's time to find a new way to communicating this stuff to people when necessary.

Thanks for reading.
Little Miss Autoimmune

Nothing is ever simple

I went to see my GP on Monday, as there were several issues I felt were starting to get out of control – the weird bulge growing on my forearm, the even weirder red painful dots on my skin, and the ridiculous number of coldsores I’ve had recently.

The weird bulge in my arm is, as I’d suspected, tendonitis (inflammation in the tendon sheaths.) It’s likely being aggravated by the fact that it’s on the side I use Molly Stick, and I’ve probably been typing/using the mouse a bit too much lately (bring on the voice software!) My GP suggested the best course of action would be to ask my nurse to give me a local steroid injection, to bring down the swelling and to stop it interfering with the function of my hand. I always get significantly worse for the first 24 hours after a cortisone shot, so I’m guessing the days after having it done I won’t be able to use Molly Stick, making life a bit difficult. My nurse is away at the moment, so fingers crossed the tendon will have un-inflamed itself before she gets back and I won’t end up needing it.

My GP also noted that there is some swelling around my joints, in addition to the soft-tissue inflammation I’ve been getting, which may mean my PsA has decided it’s tired of being in remission. That’s kind of upsetting, especially as I can’t take anti-inflammatory meds because I have gastritis (inflammation in the lining of the stomach) but I just keep reminding myself that I was incredibly lucky to go into remission in the first place. 

I’m pretty superstitious, so I was fairly sure that the coldsores were down to a combination of suppressed immune system and the fact that I tempted fate with this facebook status a while back: 

“Tubes of Zovirax are specially designed to disappear somewhere in your house, in between coldsores. Someday I will find their secret hiding place, but on that day I will probably not have a coldsore.” 

I’ve been getting them once or twice a week ever since then. My GP agreed that it is most likely down to the immuno-suppresant effect of the medications, and said I’ll need to contact my nurse to find out what I can and can’t do to support my immune system without it becoming counter-productive. It is in a round about way a good thing, because it means the meds are having an effect. But a little frustrating to find that my immune system is still over-achieving when it comes to attacking healthy cells and yet simultaneously becoming incompetent when it comes to fighting actual diseases.

When it came to the red dots, she said she honestly had no idea, other than to say it definitely wasn’t hives, shingles, an infection, or vasculitis (inflammation of the blood vessels.) All good to know, but it didn’t really get us any closer to what it was, so she got on the phone to my dermatologist. My dermatologist quickly added “a complication of the coldsore virus” and “a reaction to medications” to the list of things it wasn’t, but unfortunately, by the time I got in to see her, the red dots had all passed the point of being biopsy-able, so she couldn't give me a firm diagnosis of what it was. She did say, however, it’s likely folliculitis (inflammation of the hair follicles.) From what she told me (and a quick google search) there are a few different types of folliculitis, ranging from mild irritations to much more serious. The type I have is not caused by an infection or ingrown hairs, but by inflammation from the autoimmune diseases. To make things more complicated, the medication used to treat this kind can’t be used in people who have a positive ANA blood test, which I do (ironic when the fact that I am ANA+ is likely the cause of the inflammation in the first place!) Fortunately my dermatologist was able to give me a topical treatment instead, which should hopefully help to settle it down. 

When I mentioned the coldsores, she said that I may need to go on tablets for a year to eradicate the virus. I’m a little reluctant to do that, as I’m already on so many medications as it is, so I’ve said I will wait a while to see if they calm down on their own first.

So all in all, I’m feeling a tad –itisy at the moment. It feels at the moment like I’m not only fighting all of these diseases, but that they’re fighting each other, either making each other worse or complicating treatment options. I’ve never been a particularly zen person, but I do know that thinking like this, or getting upset and frustrated about it is just going to make things worse. So the other day I decided that any time a medical profession uses the words “Because you’re complicated...” I will mentally replace them with the words “Because you’re awesome...” Because I am.

Thanks for reading, 
Little Miss Autoimmune

And we’re back to lupus... I think

I had an appointment with my rheumatologist on Thursday. I wasn’t really expecting much to come out of it. I don’t mean that as a criticism of her, just that I was under the impression that I had no treatment options left. I wasn’t expecting that she would be able to do anything for me and I really didn’t think the confusion over the diagnosis was going to change.

Surprisingly, I was okay with this. I blogged a few weeks about the pitfalls of hope when it comes to believing illnesses will get better, and I think the opposite can be true. If your expectations are low, and you find a way to be okay with that, then anything above those expectations happening is a bonus. There were a couple of questions I wanted to get answers to, and I was really hoping that a cortisone injection in one of my fingers was a possibility, but other than that I was okay with nothing really coming out of the appointment.

It turns out the joint in my hand is too small for a cortisone shot. I realised afterwards that I wasn’t sure if my rheumy meant this is always the case with finger joints, or it’s just because my hands are unusually small for an adult (they’re the same size as my nine-year students’) but either way it wasn’t going to happen. Instead my nurse gave me an intra-muscular steroid shot. I’d mistakenly thought this wasn’t an option at the moment, as I’d got the time frame wrong as to how often you can have them, so it was a bonus to be able to have something that would quickly get some of my out-of-control symptoms back down to a more manageable level.

I was pleasantly surprised to find I do actually have a couple of other medication option still to try. My rheumy was at great pains to point out that a couple is not many, and as always there are risks with any medication, but given that I thought I had zero options left a couple is good news. I know very well that these may not work and, since I have to wait for some blood tests to come back before I get the go ahead to start, it may turn out not to be possible for me to even try. I’m not allowing myself to get too invested in the idea that these will help but, at the same time, they have more chance than nothing.

Then there was the diagnosis situation. During the appointment, I thought my rheumy had actually come to the conclusion that I didn’t fit any diagnosis clearly. I was pleased to find that I was fine with that. In the past I have unintentionally placed a lot of significance on the diagnosis, and all that has done is left me upset and confused. I cried when I first got the diagnosis of lupus, and I cried when the diagnosis went away again so clearly neither option was going to make me happy.

At the end of the appointment, my rheumy suggested of the medication options available we go with the one that works best for lupus, and she handed me a blood test form which had PsA and SLE (Psoriatic Arthritis and Systemic Lupus Erythematosus) written under clinical details. My nurse explained that sometimes people do have both running concurrently, and that that may explain why I’ve managed to simultaneously get better and worse on certain medications as they work differently with different diseases. I don’t really know if any of that amounts to a diagnosis. It sort of seems like it, but the last time someone actually said to me “yes, it’s definitely lupus” and yet later they were surprised when I thought I had been diagnosed with it, so I’m not making any assumptions.

The thing that I do know for sure, is that I was okay with it either way. I didn’t feel the need to cry, nor did I feel any relief or positive emotion about it either. The strongest thing I felt straight after the appointment was a desire to go buy some chocolate, but I think that was more down to the fact that I had the injection and four vials of blood drawn all within the space of about five minutes.

I think the reason I’ve placed significance on diagnosis in the past is that there was still a little part of me that felt maybe it would change something, and I was in a round about way still looking for that “better.” Of course I would still really really like it if things did get better – I wouldn’t be looking at new medications if I didn’t – but I’m doing my best not to hang everything on that. My new mantra is going to be: “Things are okay now, and anything else is just a bonus” and I’m going to do my best to listen to my own advice.

Thanks for Reading 

Little Miss Autoimmune

Better the Monster you know...

On Thursday, I had an appointment with my new Rheumatologist. The result? Apparently I now don’t have a diagnosis of lupus.

This was a bit of a surprise for me. It was quite confusing, as it almost seemed the doctor was implying that I’d diagnosed myself with it. I knew very well that I hadn’t, but I did start to doubt myself. Had I totally misunderstood what my previous doctor and nurse had been saying? Eventually she explained that yes, I had been told I had lupus, but that was based on some of my blood tests being positive, but others done later (which are more specific to SLE) came back negative. 

We went round in circles for a while, as I tried to understand what was going on. Basically, though I don’t have drug-induced lupus, which is curable, there is still a possiblity that one of my medications could be causing an ANA-type reaction, which would explain my symptoms and blood results without the lupus diagnosis. Well, it would explain them, if most of the symptoms hadn’t started years before first taking this (or in some cases any) medication. So after discussing this for a while, the doctor decided that actually I do meet quite a number of criteria for lupus, though still not enough for it to make a clear-cut diagnosis. She said they haven’t ruled out lupus, so essentially I don’t NOT have lupus, but we can’t call it lupus yet either.

I was quite upset when I left the office, but I wasn’t entirely sure why. Shouldn’t I be happy that I potentially don’t have a rather horrible disease? Well, happy might be pushing it. The name lupus doesn’t actually change anything. I have the same symptoms either way, and my treatment options (or lack of) are the same. So why was I so upset?

I kept going over one particular part of conversation in my head. For several years, I’ve had reoccurring symptoms where it seems like I have a urinary tract infection. Every time this happens, my lab tests come back abnormal but showing no infection. A couple of weeks ago this happened again, and the GP I saw said it was most likely down to the lupus. This didn’t really change anything, as it didn’t provide a solution, but it at least provided an explanation for symptoms that had been a mystery for years. I asked the rheumatologist about this, and she said “well, inflammation in the urinary tract could cause those symptoms and produce those lab results, and that is something you might expect to see in lupus, but we don’t want to call it lupus because then we might not investigate and miss something else.”

Something else.

For years, being sick with symptoms that didn’t have an explanation was kind of like having a dark shape in my room at night. Maybe, when the light was turned on, it would be nothing. Or maybe it would be a monster. At the end of last year, when I was told I had lupus it was like the light had been turned on, and there was indeed a monster in the room. But at least now I could see it, and if I could see it then I could control it and maybe it wasn’t such a big monster as I’d originally thought.

I realised the reason I was so upset after this appointment was I felt like the light had been turned out again. It was back to being just a shape in the room, which was maybe a monster I knew, or maybe “something else.” “Something else” really is quite frightening. “Something else” potentially puts more than one monster in my room. “Something else” makes me feel powerless especially when it doesn’t really feel like anyone is investigating to see what it might be.

Despite the anxiety that this produces in me, I don’t really think there is something else. I’m fairly certain that what I have is lupus, even if a clear-cut diagnosis can’t be made. So for the moment, the other monster in my room probably is just made up of fear, and anxiety monsters can be pretty damned scary if you let them.

I’m going to do my best not to let this one be.

Thanks for reading

Little Miss Autoimmune.

Moving House

I think everyone probably comes out of moving house with a few mystery bruises, but add to that illness and medications that cause easy bruising and you're going to come out a bit blotchy!

Anyway, apart from sore knees I seem to have survived moving with only minor flaryness - I was expecting a major one, but it hasn't arrived *knock-on-wood*

I'm now pacing my way through the last of the unpacking, and getting settled.

- Little Miss Autoimmune