A silly place filled with caffeine induced ramblings of this person named KarmaGirl....or something.
What I do to keep healthy
Published on March 1, 2013 By KarmaGirl In Life, the Universe and Everything

My previous article was a bit of a glimpse into what it is like to live day by day with Lupus.  It was just a slice of my daily life, but I didn't talk about things that I do to try and help myself stay healthy and active.

There is a balance that has to be found in life.  With me, my biggest struggle is finding a way to manage pain enough to stay active, but to not take so many medications that I'm stressing my liver.  You can't live without your liver, and since mine's not that great, I concentrate on making sure I do what I can to help it out.

There are 4 main categories that I will throw things in for this article: 1) Diet, 2) Activity, 3) Medication, and 4) Daily routine.

#1- Diet.  Don't underestimate food.  If you eat like crap, your body has to deal with that crap.  I have spent the last 14 years of my life trying to figure out what foods trigger flares, rashes, and fatigue.  Here is some of what I've learned about myself:

Meat- it's what's rotting in your colon.  It produces ammonia during digestion, which then causes your liver to have to convert it so that your kidneys can rid it from your system.  This taxes your liver and kidneys.  You also then get the cholesterol to deal with, and animal protein to digest, which is much harder on your body.  In the past 5 years, I have gotten my cholesterol into the "normal" range, and have increased my liver functions by not eating meat.  I was a vegetarian longer than that, but I was also making other changes, so I'm not sure what affected what before the past 5 years.

Veggies- Eat them.  Get at least 6 servings of fruits and veggies a day.  They have nutrients that your body needs to heal itself.

Dairy- Dairy can be evil.  I am allergic to it (gives me hives).  I would suggest using it in moderation.  You don't need dairy to get calcium and Vitamin D- there are plenty of other foods that will provide that, assuming you aren't just eating junk.

Eating out- Don't do it often, and don't eat fast food.  There is too much salt and fat in restaurant food.  There is no sense in getting a flare over food.

Soda- It's a can of delicious chemicals that you should really moderate.  It doesn't help your body at all, so only have it as a treat.  

 

#2- Activity.  Keep moving, even if it hurts.  When I was diagnosed with Rheumatoid Arthritis 27 years ago, the thought then was "if it hurts, don't do it".  Luckily, a doctor told me that I would be in a wheelchair by 21.  Why was that lucky?  Because, being the young shit-head that I was, I thought "well, if I'm going to be in a wheelchair anyway, why should I care if I'm hurting my joints?"  Luckily, I kept active and ended up staying mobile.  If you don't keep moving, you will end up in bed feeling sorry for yourself, and soon you will decide one day to just stay in bed and let somebody else clean up your poo.  Don't do that- get your ass up and move.

 

#3- Medication.  Now, this is a tricky one.  Everyone senses pain differently, so not all pain meds work the same, and not everyone needs the same treatments.

This is what I take on a daily basis:
1) Armour Thyroid - I've had my whole thyroid removed due to 32+ cysts and nodules
2) Hydrochlorothyazide - BP medicine.  Most people with Lupus have high blood pressure
3) Effexor XR- This is for pain management, though it has helped my OCD a bit.  I rather be on Cymbalta, but my insurance won't pay for it, and I don't want to pay $200 a month.

Now and then I get a flare that won't go away and I go on Plaquenil for a couple months.  I could avoid some flares by staying on it, but I just don't want to put my liver through that.

Pain Management:
1) Good Old Naproxen
2) Tramadol for when Naproxen just isn't enough
3) Vicodin for when Tramadol doesn't cut it
4) Flexeril for when my muscle spasm for no good reason

Then I have a very interesting one- vaporized nicotine.  Now, this is not "smoking", it's nicotine in a suspension that is used for other medical uses, such as asthma inhalers.  Nicotine is not cancer causing, and after many tests, it has actually lowered my bp.  Seems like an odd treatment?  Well, they have been testing nicotine post-op for quite some time.  There are studies going on, like the one I'm in, that shows that it is very effective at pain management.  Why? It is believed that Nicotine raises the level of dopamine in the brain.  The brain converts dopamine into norepinephrine.  Now, if you look at Cymbalta, which is approved for pain management, one of its main features is that is raises levels of norepinephrine.  If anyone is interested in further information of how I use Nicotine and what equipment I use, let me know and I'll write its own article.

 

#4- Daily routine.  This seems like something that isn't a factor in keeping healthy, but it is.  It's important to go to bed and get up at the same time each day.  Now, I have insomnia and sleep apnea, so I don't always sleep much, but keeping yourself in a routine is a good thing.

I have also identified skin irritants, such as perfumes, anything that's not cotton, many lotions, soaps, etc. that I avoid.  I make sure that I start my day with a shower, check for any body parts that have a new rash or other afflictions, and then apply topical treatment to the rashes.  Keeping clean and keeping the rashes under control is important since Lupus effects the skin heavily, and your skin can really throw you for a loop if it's not healthy.  I also use very little make-up and try and be as gentle on my skin as possible.

Eat at about the same times everyday.  Eat smaller meals and more of them.   With Lupus, as mentioned, your liver is at risk.  Smaller, frequent meals are easier on your digestive system, are less taxing on your liver, and help maintain glucose levels.

Have downtime.  It's easy to get so busy that you get too stressed and cause a flare.  Make sure that you take at least 30 minutes each night to just calm down before going to bed.  I find sitting in a quiet room petting dogs is the best for calming me down.  It lets my brain settle, and it's always great to snuggle with wiener dogs.  If I am really stressed, I will opt for a 20 minute session of meditation.  I see it as a "reset" for my brain.  Lupus also effects brain chemicals, so it's easy to get a bit on the bat shit crazy side.  Prevent that my giving your brain a rest.

 

Well, I probably have more to say, but I've already written a book.  If there is anything that anyone would like more detail on, or has questions about, let me know! 

 

 

 


Comments (Page 4)
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on Mar 05, 2013

PoSmedley
Is there not a generic version available there? I

I was using the generic version... but that, too, has been removed from the PBS, along with a number of other meds pensioners and low income families relied on.  It will come back to bite the government at the next election, but the next bunch of liars won't restore any of them.

No, I'm back to speaking with my doctor and hoping to be prescribed something effective that will remain attainable, cost-wise.

PoSmedley
I just don't understand how they price this stuff

Me either!  I seems to me they assess how much they think the market can bear and add a couple of bucks for good measure.  This means the wealthy and high/middle income earners can afford it, and pensioners/low income earners will have to sacrifice food on the table or forego other items to fill the scripts.

on Mar 06, 2013

starkers
No, I'm back to speaking with my doctor and hoping to be prescribed something effective that will remain attainable, cost-wise.

Can you or I should ask..'do your countries laws' permit you to order 'on-line'?

 

http://www.pharmacychecker.com/compare-drug-prices-online-pharmacies/tramadol-50+mg/40027/67895/

on Mar 07, 2013

PoSmedley


Quoting starkers, reply 46No, I'm back to speaking with my doctor and hoping to be prescribed something effective that will remain attainable, cost-wise.

Can you or I should ask..'do your countries laws' permit you to order 'on-line'?

 

http://www.pharmacychecker.com/compare-drug-prices-online-pharmacies/tramadol-50+mg/40027/67895/[/quote]

I'm not sure what the stance here in Australia is on that..  I will check up on it, however.... and thanks for the link, Po`... if the legality works out okay I'll certainly investigate it.

on Mar 07, 2013

starkers
if the legality works out okay I'll certainly investigate it.

There are a lot ..a LOT of links and info on this. There are a lot that say they can sell it to you 'without' a prescritption'. I would avoid those unless it comes down to having to take such a chance. I don't think the legality is as big an issue as whether or not your are getting what you pay for and not a bunch of sugar pills, ya know.

I just got the call this morning that my insurance has approved the spinal cord implant. I go in on the 26th for the trial. Very nervous.

on Mar 07, 2013

Best of luck to you, Po'.

The online meds thing is risky... one doesn't know if the med is real or not, was stored/shipped properly or not.

I'd make darned good and sure the "Pharmacy" has an excellent reputation and that it's "kosher".

 

on Mar 07, 2013

DrJBHL
I'd make darned good and sure the "Pharmacy" has an excellent reputation and that it's "kosher".

What the doc said. 

Not to be a smart ass, but Jafo always seems to have information when no one else can find it. Maybe he knows something about the laws where you are or about some of these online pharmacies.

on Mar 07, 2013

PoSmedley
approved the spinal cord implant.

 

 wow.... You and 2of3 will be like brothers...  Maybe he'll let you join his unimatrix....         

Seriously though.... I hope it works out well for you....you need to get a break from all this pain...  

on Mar 07, 2013

sydneysiders
You and 2of3 will be like brothers.

He has one?????????!!!!!!!!!!

on Mar 07, 2013

PoSmedley


Quoting sydneysiders, reply 52 You and 2of3 will be like brothers.

He has one?????????!!!!!!!!!!

Don't you remember how his nick came about? He has two siblings. 

on Mar 07, 2013

DrJBHL
Don't you remember how his nick came about? He has two siblings. 

I'm medicated, dammit. What does his having two siblings have to do with having a spinal cord implant? Don't mess with my stupor, people. Don't. It's a fragile thing.

on Mar 07, 2013

DrJBHL
Don't you remember how his nick came about? He has two siblings. 

 

of course..... But this could make Po'....   4of4 In the unimatrix...      

on Mar 07, 2013

PoSmedley


Quoting DrJBHL, reply 54Don't you remember how his nick came about? He has two siblings. 

I'm medicated, dammit. What does his having two siblings have to do with having a spinal cord implant? Don't mess with my stupor, people. Don't. It's a fragile thing.

on May 07, 2014

Has anyone got any news on Angie? 

on May 07, 2014

Jim, she just had a birthday, she's at work and doing fine...and scarfing down Thai food.

All very good signs.

on May 07, 2014

 

 

Thanks Doc.

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