Living with Lupus part 2
What I do to keep healthy
JoeUser Forums
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!
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I swear, some of these drugs they give you side effects sound worse than the condition you are afflicted with...
