I'm Adapting

lupus.cheezburger.com

Earlier in the month, I posted about an issue I was having with constant vomiting.  My GP added a number of anti-nausea drugs into my cocktail.

Then I started having abdominal pains, and she added a laxative.  It helped.

So now, I've got lots of drugs to keep everything moving in the right direction.

But I still have an issue with nausea.

Yep,  the medication's helped, but the problem hasn't gone away.

It's like morning sickness (and I am definitely not pregnant.)

With my first child, I lost weight in the first few months of pregnancy because of morning sickness, so when I say it feels like morning sickness, I mean it's pretty awful.

For the first few days of this, I lived on Ensure (it's the only meal replacement I could find that appeared from the ingredients list to be free from lactose and gluten.)

After a while, I added some solid food back, in the middle of the day.  A couple of times I tried eating in the evening as well, but found I was really sick while I was trying to sleep.

Today, I tried eating breakfast for the first time since this all started.  It was a big mistake, and I won't do that again.

What's causing the problem?  I have no idea, and my GP doesn't seem to have any idea, except that I have always had gut problems.  This just seems to be my normal reflux and irritable bowel just asserting themselves quite a bit more than usual.

Right now, I'm just trying to be very kind to my gut, being very careful about lactose and gluten, trying not to eat too much when I eat, and being careful to eat plenty of fibre.

One thing that lupies learn to do very well is to adapt to whatever lupus throws at us.

I'm adapting.



Related post: Keeping the Bucket Close

Oh Poo!

I turned 50 this year.

In Australia, that's a significant milestone.

It means I can now send the government my poo, and not get in trouble for it.

I don't know how you feel about politics, but I often think having a pile of poo in Parliament House would not be much different to what we have. So I'm eager to contribute my fair share to the pile.

But apart from the delight in knowing that one can give the government poo, there's a serious side to this rite of passage.

Australians 50 and over get a request from the government to provide a sample of our poo, to test for bowel cancer.  I know lupus is quite enough and I don't need any cancers as well, but bowel cancer is very common among Australians.  (That probably says we eat too much junk food and too little fibre.)

My test pack arrived today.

It seems a fairly simple process.  Use the special paper to catch poo, a sample pick thing to pick it up and put it in a dated sealed test tube.  Refrigerate it, and repeat with another set of collection equipment a day or so later. Then put both samples, with a form giving my personal details, in the addressed envelope and send it away.

Clearly, it's not the most dignified of things to do.  On the other hand, if it catches bowel cancer early, it might saves some of the very many indignities of bowel cancer treatment. And all it will cost me is a bit of time, and a bit of politics, er, I mean, poo.

Wait? What?

Yes, I have done a sleep study.

I don't know if you recall, but I had to make a choice about travelling to Brisbane regularly to see the rheumatologist who diagnosed my lupus and has been my specialist ever since, or to go to someone local.

I opted for the local specialist, rather than the train trip.

Right now, I'm wondering if I made the right choice.

On my first visit, the new rheumatologist looked at my blood test results, poked and prodded my sore spots and told me my lupus was inactive, but I had fibromyalgia.

This week, I had my second appointment with him.

He advised me I don't have lupus.

This would be good news. It would be really, really good news.  But for it to be true, a number of other specialists would have to be wrong, and I would need several other diagnoses to cover all the symptoms that one diagnosis currently covers.

So what's he basing this on? I think my blood tests.  Lupus doesn't always show up on blood tests.  When it's not flaring, or is controlled by medication, it's even less likely to show up.  So my blood test looks healthy. (Well, not quite.)

Last visit, this specialist started on weaning me off my drugs.  He started by reducing my methotrexate (for lupus), but also decided I didn't need my cholesterol drugs because my blood test showed my cholesterol was good (with the drugs). He also took me off sulfasalazine (for lupus, but specifically for my gut symptoms.)

This visit, he put me back on the cholesterol drugs.  Why?  Well, because even though my cholesterol looked fine on the blood test while I was taking them, it's terrible when I don't take them.

I reported that without sulfasalazine, I can't even get away with a tiny bit of gluten occasionally.  He said I am coeliac.  Actually, I've had several gastroenterologists over the years check and recheck that. I've had gastroscopies and colonoscopies.  You name it, I've had a camera look at it.  I'm not coeliac.  The new rheumatologist said they're probably wrong, and if they didn't take a biopsy, they wouldn't know.  (Biopsy of what? They didn't find anything abnormal to test.)

I also told him the results of the tests the gerontologist had done, that the only physical thing she'd found was vascular changes in my brain, which she said was "just normal lupus" and would be throughout my body. The new rheumatologist said she was also wrong, and that it would be migraine.

He suggested I probably had sleep apnea, which would explain my fatigue. I'm fat, I must snore. I do snore. I don't have sleep apnea.  Have I had a sleep study done?  Why yes I have. Well, fibromyalgia can cause fatigue as well.

(He didn't mention my frequently fluctuating liver function. Maybe he thinks I drink.  I don't.)

The next drug he wants to wean me off is prednisone. I'm on five milligrams a day. He wants to take it down to four a day for a month, then three a day for a month, and so on until I'm off it completely. I've tried this before.  A previous doctor helped me get from 25mg a day to 5mg a day.  When we tried to get lower than that, I got sick.  I got very, very sick.  I mentioned this to the new rheumatologist.  He said: "People with fibromyalgia feel fantastic on steroids, they don't like to come off them."

My photosensitivity, he didn't attribute to any particular cause, just noted I'd had it for a very long time.

My big fear is that the same thing will happen with the lupus drugs as happened with the cholesterol drugs: that he will take me off them until a blood test proves I need them.  For me, by the time lupus shows up in a blood test I'm in agony, unable to move, too exhausted to get out of bed, and pretty much helpless.  Worse than that, lupus, out of control, can damage any organ of the body. I had a hysterectomy because of unexplained, horrible symptoms.  Who knows if the next organ to go nuts might be one I actually need (like the liver that's frequently iffy anyway)?  Do I really want to take that risk just to prove a point?

I haven't taken my latest list of medication changes to the pharmacy.  Instead, I've made an appointment to see my GP.

The way I see it, I have three options:

1. I continue with this rheumatologist and have to accept that every other specialist I have ever seen is wrong and that my one diagnosis should be replaced with several.
2. I see a different, local, rheumatologist. One that other local lupies have said is good.
3. I take the train trip to Brisbane every few months, and accept I'll need a week or so to recover.

If you're wondering, I'm really only seriously considering options 2 and 3.  I'm going to discuss it with my GP before I make my final decision.

Oh, now another minor point.  Comparing notes on experiences with rheumatologists, another lupie who tried this one and then changed, said this one doesn't actually believe in lupus. I hope that's not really true.  A rheumatologist who doesn't believe in lupus? That's as crazy as a climate scientist who doesn't believe in climate change.


Related Posts:
Fibromyalgia
Not All In My Head
To Sleep, Perchance to Dream
Vampire Life

lupus.cheezburger.com

Top Lupus Blogs of 2015

Healthline

You may have noticed the new badge on the right hand side of this blog. (There's a copy of it above, in case you missed it.)

For the third year in a row, Sometimes, it is Lupus made it to Healthline's list of best blogs.

I think it is the only Australian blog on the list.

According to the email they sent me, that's judged on quality, frequency of updates, and contribution to the community. 

So given the many ways lupies who read this blog also contribute, and form a community, thank you for making this something that was considered worthy of the list.

Oh, and if you haven't already, why not take a look at the other blogs listed?  

Back Away From The Sandwich

Well, that's a big fat fail on the 30 posts in 30 days Health Activist Writers' Month Challenge.

Where have I been?  Well, mostly in the loo, and otherwise I've been on the couch, utterly exhausted, sleeping in front of the tv.

There's something really perverse about lupus.  I've spent days and days hoping I have a really bad case of gastroenteritis, or maybe dysentery.

I've also been waiting for a retest on my latest bad liver function test.  The result of the retest is that yes, it is improving, but still not great. (I was kind of expecting that, my liver function tests are always fluctuating.) There was just this nagging doubt that because I felt so incredibly sick, maybe this time it wasn't going to improve.

So that was my Easter. I didn't even get to church.

Of course, there's a glaringly obvious cause for my abdominal disturbance.  I've been eating gluten.  Not just sneaking a tiny bit now and then, but eating like a normal person.  I keep saying I'm not celiac, just gluten intolerant. It won't kill me.  Right now, it feels like it is killing me, which is probably a good reason to go back to my strict gluten-free diet.

Yes, I hear you yelling at your screen, "Who does she think she is, trying to get away with doing anything like a normal person?"

What can I say?  I'll just put this sandwich down, and back away slowly.

(Oh, a little note to those people who choose not to eat gluten, even though they aren't celiac or gluten intolerant:  Are you insane?  Do you know how much I would like to be able just to eat anything I felt like without getting sick? Having said that, thank you for making gluten free products popular enough that I can get them easily.)

Fibromyalgia

A new rheumatologist has meant a new look at my condition.

There was good news and bad news.

Let's start with the bad news.

I don't just have lupus. I also have fibromyalgia and osteo arthritis.

Is anyone surprised?  Lots of lupies have other conditions, especially autoimmune conditions, as well.  Frequently, it's not just lupus, it's lupus and some other stuff. It's just a part of the whole package.

Now for the good news.

My lupus is actually inactive at the moment.  My current symptoms are all fibro and osteo. (Except for the dry eyes and mouth - those are sjogren's symptoms.)

That means, over the next few months, my lupus drugs can be reduced.  First to go will be sulfasalazine.  Then, over several months, my methotrexate will be reduced to about two-fifths of my current dose.

A bonus is that the methotrexate may be contributing to my brain fog, so I might have a clearer head as the dosage is reduced.

To treat the fibro, I need to increase my exercise.  So, I now need to have a 20 minute walk each day. I also need to get re-started on hydrotherapy. (I haven't been to a pool since my move.  Time to get moving.)