February 2012

On day 2 now and feeling pretty decent for a change.  Still haven’t pooped, but I did bring a giant jar of Miralax with me and am doing my best to keep on with it.  The weather is nice and sunny with a bit of a chilly wind.  I am being sure to put on lots of sun protection.

I am also doing my best to get a lot of rest.  I woke up early yesterday and sat around the hotel room until noon.  Then went into town for some shopping and lunch with friends.  Afterwards, I came back and took a 30 minute disco nap before having my massage.  The massage was not very great.  Amateur masseuse with strange technique.  That is always a huge disappointment.

Ended up ditching my friends for dinner because Mr was so tired after his long day working.  We opted to order some gross room service and a bottle of wine instead.  Fell asleep pretty early, but then woke up at 2am and couldn’t get back to sleep.  I eventually took an Ambien and read some before passing out again.

Woke up, or should I say, was woken up this morning at 7am when Mr was getting ready to go.   Couldn’t go back to sleep.  I went down and had breakfast from the buffet including 3 chocolate mini-donuts (ugh, why did I do that?), drank a few espressos and now am back in the room to plan the day.

Thusfar, feeling good.  No longer achy.  Only problem is the lack of poop…

I am currently sitting in Barcelona after having travelled for the last 24 hours straight.  I am really worried that I am going to make myself sick again, so the plan is to keep it simple here.  I got a decent night’s sleep with the help of some Ambien and melatonin.  Woke up early and had a little breakfast and now am passing the time in my room staring at the beach and waiting for the spa to open for my 75 minute jetlag massage.  So far, so good.  I felt like garbage travelling and it the hours of layover at Heathrow were pure torture.  But I made it here safe and sound.

I need to readjust my meds schedule and keep a careful watch on how I am feeling.  Also need to keep my alcohol consumption to a minimum which is hard to do in Barcelona, but I will do my best.

Four days in, one bottle of Miralax consumed.  Results – not so much…

I started out on Monday taking 2 doses of the Miralax.  One in the morning and one in the evening.  I have to admit that I was a bit frightened because other laxatives have a pretty powerful effect on my system.  They usually cause cramping and an urgency to get to the toilet – FAST.  So when taking the Miralax, I was pretty convinced that it would be the same old story.  According to the bottle, Miralax should not cause bloating, gas or any of these other issues, but I feel like all of them say that.  They also say “gentle, predictable relief”.  Yeah, if by predictable you mean that you might explode from 2-12 hours later whilst in the middle of a shopping mall, then sure.

Day 1 – Nothing

Day 2 – Nothing.  Drank tons of water.

Day 3 – Nothing.  Doc said to “double down” on the dosage.  Up’d to 4 doses.

Day 4 – Some gurgling in my gut.

So I sit here waiting.  In the meantime, I have discovered that people are far weirder than I am and actually make youtube videos about Miralax.  I am totally confused by this.

My fingernails are totally gross.  They are peeling and thin and cracked.  I can’t seem to get them to heal despite taking biotin and all the other supplements that I take on a daily basis.  This has only been happening in the last 6 months or so.

I used to have the most amazingly thick and beautiful nails as you can see in this photo.

I think that the combination of Raynauds and lupus has really taken a toll on my nails.  They simply aren’t getting enough oxygen and nutrients.

You know they say that you can tell the state of someone’s health by the state of their nails.

Well, you can then imagine the state of my health.

I love red wine.  But, sadly, it seems that red wine doesn’t love me all that much.

I have found that it really increases my inflammation and joint pain.  To the point that it isn’t worth it at all to drink it.  I have long suspected this and had switched to only drinking white wine.  With that said, I am a picky white wine drinker and I really disliked chardonnays.  Especially California oakey ones.  I find them undrinkable.

Last night we went to a wedding and they only had a cheap chardonnay as the white, but they had a cabernet savignon as the rest – albeit totally cheap as well.  I opted for the cab.  Note that I didn’t eat anything unusual either – just salmon, mashed potatoes and green beans. This morning I woke up with swollen fingers and joint pain.  Ugh.

Therefore, I am off the red again.

I’m wondering if anyone else has this issue with drinking red wines?  Is it the sulfites?

According to this post, red wine actually combats inflammation.  And this post states that researches have also found that resveratrol blocks the activation of the COX-2 enzyme, the real culprit in igniting inflammation and pain in the body.

Then why do I have the completely opposite result?!?  Darn it.

My ongoing poop and pee issues continue with no relief.  I tried for the appointment at the urologist, but had to cancel due to work issues.  Was unable to reschedule.  We finally gave up and called Mr’s brother-in-law who also happens to be an ER doc to talk about it.  He suggested that the urine retention issue was due to constipation.  I explained that I had taken a few laxatives because I also believed this to be the case and he asked me which kind.  I told him Ducolax.  He suggested that I try MiraLAX which won’t harm the body and also doesn’t require your body to metabolise it like the Ducolax so it is much safer to use and you can continue using it daily.

From what I have read online, people are really pleased with the results and a lot of folks take it every day.  This seems extreme, but at this point I am willing to try anything out.

According to the MiraLAX website, it relieves constipation by bringing water into the bowels to help the digestive system naturally cause a bowel movement. This water also softens the stool, making it easier to pass.  This also means that you can get dehydrated and need to drink plenty of water.  Thankfully, I always drink plenty of water despite it being such a pain to urinate.

Last night we celebrated Valentine’s Day a day early.  We shared some beef which neither of us eat that often these days.  I think that I was having trouble digesting it because I slept really poorly and so did Mr.  He was tossing and turning which ended up waking me up.  I did try my new sleep phones and they were pretty decent to sleep with, but my sleep was troubled and I kept waking up regardless.  Which means that I am paying for it today.  Very tired.  Just woke up from a 1 1/2 hour nap.  And now I have to fly somewhere.  I can’t wait to get back into bed and sleep some more.  I really hope that tonight is good.  I hate sleeping in hotels.

I am feeling pretty good these days.  My energy levels are way up compared to where I was at a month ago.  I can go through the entire day without a nap – although I probably shouldn’t.  I have been passing out at night around 10pm or so and mostly sleeping through the night.  I have been having this annoying thing where I fall asleep for about 4 hours, but then I wake up and having a lot of trouble falling asleep again.  I mentioned this to a friend of mine and he said it is because the first 4 hours of sleep is for your body and the last 4 hours of sleep is supposed to be for your mind.  If you are stressed then you will wake up.  Not sure if this is really the case, but still would explain why I get up and start thinking.

I read up a little more on sleep cycles here: http://helpguide.org/life/sleeping.htm

I need to figure out the best way to put my mind at ease when I wake up.  When I am by myself I listen to Meditainment soundtracks.  I find that the soothing voice and soundscapes distracts me from my thoughts and I fall right back to sleep. Unfortunately, I don’t want to disturb Mr with my noise, so I don’t listen to them in bed.  Putting headphones on is really uncomfortable and hurts my ears after a few minutes.  So I went looking for sleeping headphones and, of course, there were some on Amazon that looked pretty reasonable and comfortable.  I ordered some and await being able to try them out.  I’m sure that it will look pretty weird with my eye mask and this other thing around my ears.  I’m wondering if I can just use the fleece heaphones to cover my eyes and then all issues might be solved!

Sleep Phones from Amazon – $39.99

I think that I was overly stupid and jumped the gun on doing the juice cleanse…

I lasted a day and a half and started to feel really ill and decided that it was probably not the best idea to be so extreme given my current state of health.  I got a splitting headache and my glands started to feel swollen, so I stopped.  I wasn’t actually feeling hungry and I’m sure that some “experts” would have said that I was simply getting the toxins out, but I still figured that playing around too much at this point wasn’t a great idea.

So I have ended up sipping the rest of the juices and eating.  Next time I need to think a little bit more about what I am doing instead of jumping from one fad to the next!

Oh and I think I will make more healthy green smoothies for breakfast instead of for every meal.

This is one of the great mysteries of my life.  I am not entirely sure what sets off my flares.  There are some really obvious things like too much travel, not enough sleep and stress.  But then there are other times where I really can’t say what is causing it to kick off.  I suspect that there is a lot to do with diet, but I haven’t been able to pinpoint what exacerbates my symptoms.  I am trying to cut down on the wheat products because my digestion isn’t that great and I notice a difference when I consume wheat products for sure.

I also am in a constant state of fear that I am about to have a flare.  I do tend to notice that I start to feel dizzy and foggy when I am in the danger zone.  I start to feel tired and zoned out.  I have trouble concentrating.  The other big one is getting splitting headaches and some swollen glands.  When all of this starts to come together, I try to make sure to get a lot of rest and drink tons of water.

What kicks off your lupus flares?  Have you had any issues with certain foods?  Would love to hear from people.