Are you suffering or know someone with an Autoimmune Disease?
Hi, my name is Sara No H. I am currently 26 years old and have been diagnosed with Systemic Lupus Erythematosus (SLE) & Lupus Nephritis. I first noticed symptoms of my disease in January 2017 at the age of 25. If you don’t know what an autoimmune disease let me help. Autoimmune diseases are where the body’s immune system attacks healthy cells. There are quite a few autoimmune diseases, so I will mainly stick to Lupus for now. But some of these tips & tricks can help others too!
It’s now been 14 months of having Lupus and I’ve learned and figured out a few tricks to help with the symptoms. I really hope this helps you or someone you know. Just know that what might work for me, probably won’t work for you. Each person experiences this disease differently, but it doesn’t hurt to try!
STRESS & FATIGUE:
Stress and Fatigue is one major factor when it comes to dealing with your autoimmune disease. You just found out you have this lifelong disease that may or may not be controlled. But there are a few thing you can do to help ease things.
- Keep your schedule simple – don’t overwork yourself, this is all new and you need to figure out how your body will handle these changes.
- Exercise – even though you don’t feel like doing this, just taking a simple walk around the block will help drastically.
- Relaxation techniques – I for one personally don’t like yoga, but a little meditation time helps you clear your mind and just focus on you.
- Get plenty of rest – Sleep is major, not resting is not going to help you.
- ASK FOR HELP – don’t ever be afraid to ask for help, for almost 3 months I had to have my parents help me get ready for the day because I was so swollen I couldn’t walk.
When you have Lupus, the sun is now your worst enemy. The harmful rays of the sun actually can trigger your Lupus and cause a flare up or even make your rash return.
- Avoid the Sun – Make sure when you go outside you wear at least SPF50 (UVA/UVB) Sunblock, wear hats, and protect your skin.
- Reapply – Make sure you reapply your sunblock every 1.5 to 2 hours if you are outside. It doesn’t help if you just wear it once.
- Avoid being outside for too long – The sun is at its worst between 10am-6pm. So if you can avoid being outside for too long.
- Stretch Marks – unfortunately with the swelling stretch marks will happen all over your body, find a good stretch mark cream and use it every day. Also, DONT SCRATCH fresh stretch marks, it’s going to itch, just avoid further damage to your skin.
These are just simple things you can do to help.
- Get Vaccinated – Vaccinations are key to staying healthy. Now that your immune system is suppressed and you are very prone to getting sick they are your only defense at fighting any illness you may come across.
- Treat for High Blood Pressure & Cholesterol – even though I’m 26 and never thought about worrying about this, I need to now. Some of my medicines can trigger stuff like HBP so I need to make sure to keep myself in line and as healthy as possible.
- Protect yourself from infections – AVOID SICK PEOPLE!!!!! Once you get sick it very difficult for your body to fight off the bad guys in you. So do your best to stay healthy. I keep hand sanitizer with me at all times, I was my hands frequently, and I even have face masks.
- NO SMOKING – I know you already know that smoking is bad for you so I won’t lecture you on this.
- Get Regular Exams – keep up with your exams with all of your doctors. You will for now on have to have a routine yearly checkup with the Ophthalmologist.
NAUSEA, VOMITING, & DIARRHEA:
Unfortunately, there is no avoiding this, your body is just going to react so poorly to EVERYTHING, but I did find some things that would help!
- Drink Ginger Tea – This was the one thing that I found most helpful. Ginger is soooo good for your body especially when you can’t keep anything down. The best is from scratch. If you don’t know how to make Ginger tea, I’ve got you! All you need to do is boil some cut up ginger root & 1 cinnamon stick in a pot with 2 cups of water, let it boil for about ten minutes. Then you strain it into a cup, add some lemon if you’d like or even honey to sweeten and let your tummy be happy again.
- Carry Barf Baggies – I know this sounds weird, but take it from someone that ends up throwing up at least once a day, it’s going to hit at any time so being prepared helps.
- Carry extra underwear and pants – Okay, I know you’re questioning why, but sometimes accidents happen even as an adult, to avoid the embarrassment and pack extra clothes.
SWELLING, EDEMA, WATER RETENTION, JOINT PAIN:
This part can be very tricky, especially since now that you know what you’re dealing with all of your doctors will advise you to avoid any ibuprofen or Advil medicines. These medicines can damage your kidneys even more.
- Turmeric – as a natural anti-inflammatory compound, it also helps repair any damage. You can easily take this in a capsule form or use the actual root or powder in your cooking. It’s also found in Curry, so if you love Indian food you’re in luck!
- Ice packs – Ice packs help when your joints are really swollen, just remember to never over ice. Just stick to about 20 minutes a day.
- Compression Socks – I know this sounds silly, but when you’re so swollen and you can’t even wear any shoes, the socks will help push the swelling up.
- Elevation – keep your legs elevated, that will also help with the swelling.
- Massage – try to massage your legs daily, that way you can get blood flow through those stuffed puppies of yours.
- Muscle Spasm – These are going to occur a lot, so stay hydrated & eat your bananas!
- Hydrate – even though you’re retaining water, your body needs all the good fluids, so drink plenty of water!
- Avoid Sodium – Sodium is a big factor with edema, so try to stick to a low-sodium or sodium free diet.
Your diet will be key to feeling better especially if you are unable to keep food down.
- Low Sodium Diet – try to focus on a low sodium diet. It doesn’t help with your swelling and plus sodium isn’t that great for you.
- High Protein – since you are losing a lot of protein, you need to replenish that with a high protein diet.
- Eat lots of Veggies – VEGGIES are key. They pack so many nutrients and you’ll just feel better.
- More Fruits less sugar – when you need a sweet treat, go for an apple or banana but don’t eat too many fruits because they are high in sugars too.
- Avoid Carbonated Drinks & Sodas – I know this one is tough, I love a good Mexican Coke, but for now, you need to focus on making yourself healthy. So stick to water or fresh juice.
- Alcohol – unfortunately, alcohol is going to affect some of your medicine, plus it’s not good for your kidneys, so avoid drinking any.
I know this sounds horrible, and it is, but your hair will eventually grow back.
- Rogaine – yes, at the age of 25 I was using Rogaine, and I did see a difference.
- Hair Regrowth Supplements – I’m talking more than the Hair, Skin, & Nails stuff. I have been using a supplement pill called VIVISCAL and I have seen a drastic change in the actual regrowth of my hair. This was suggested by my Dermatologist, this product can be a little pricey but I think it’s completely worth it.
- Hair Extensions – If you’re going this route all I can say is INVEST in good hair, that means spending around $200 for your extensions. I have 2 different kinds, I first started with the Halo Hair Extension which was great with the length and thickness, but eventually I lost so much hair it was too noticeable. Once I was able to get more hair regrowth I switched to Tape-In Extensions with are so easy on your hair and won’t damage it.
- Rock You Natural Hair – I completely understand how much your hair can help how you feel. Just know, IT DOES NOT DEFINE YOU! I’ve recently even accepted my short hair now and it’s done wonders on my own self-esteem.
WEATHER & SEASONAL CHANGES:
This one can be a bit tricky. Each person is affected differently by their lupus. For example, this summer was so brutal for me. I had a hard time when the temperatures were over 85 degrees I would need to stay indoors. Now that it’s getting colder I can feel it in my joints so I typically stay indoors if the weather gets below 40 degrees. You can really tell when a storm is brewing.
- Plan ahead – be sure to check the weather report ahead of time so you can better prepare yourself for a possible “bad Lupus day.” Your body will let you know if you can or can not handle it. Don’t push yourself.
LAST BUT NOT LEAST, HAVE A GREAT SUPPORT SYSTEM:
I can’t even begin to explain how important it is to have a genuine support system, whether its family, friends, or co-workers you need them. This time of your life is so scary because you honestly don’t know the outcome of all of this. Having people that care about you and love you that are willing to be by your side every step of the way really helps. I was so lucky enough to have parents that were able to support me through everything, especially with the medical necessities, my friends that showed nothing but love, and to my co-workers that were so helpful and made work easier for me when I couldn’t walk, eat, or really function. If you feel like you might be alone on this, you’re not. You have ME! I really hope I can help you with any support I possibly can. Please don’t hesitate to message me. I can help you through doctors appointments, or just any question you might have. Just know I’m not a doctor, so if it’s a medical question you should seek professional medical help. But just know I am here for you! We’ve got this!
If you’ve been recently diagnosed with Lupus, check The Lupus Foundation of America website. They have amazing resources & advice.