Tag Archives: autoimmune

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Need to know exactly what lupus is? Go to: What is Lupus

I’m Putting on Purple today, are you?

The important days.

I worked 9 of the last 10 days, and the day I had off I helped my sister and her family move.  Life has been super busy, and I am SO glad today is here!

Other than heading out with some friends this afternoon and then movies with my new hubby, we don’t have anything planned!

When you have Lupus you find out just how important these ‘off’ days are.  Even though I don’t think I am in a flare right now, I still need time to rest and recharge.  And working 9 out of 10 days is a little bit too much for this Lupie.

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I have learned you have to take every opportunity you can to rest.  Some friends of ours were having a bbq last night. I didn’t get off work til close to 8 pm after a busy day, I had my hour commute home still to go.  I would have to run home, get a change of clothes, then head to our friend’s house.  I knew I would be overdoing it if I tried.  So instead, I begged off, went home, had some dinner and was in bed way earlier than I would have if I had gone to the bbq.

It does stink that I sometimes miss out on things, just another sucky thing about lupus… but I am learning to make the best of things.  🙂

I hope everyone has a relaxing and rejuvenating weekend!!

-Erin

Malar – Butterfly Rash

Well, it wasn’t just one day.

My malar rash showed back up.

What is a malar rash?

A malar rash, also known as a butterfly rash, is often seen in Lupus.

It can be red, or even purplish, and can sometimes feel a little scaly. It can stretch from cheek to cheek across the nose like a butterfly’s wings and normally stays away from the nasolabial folds (smile lines on your face). It can appear as faint as just a flush, or bright red.

Here are some pictures of what it may look like:

rash1 rash2

For me, it is one of the first symptoms I had. Mine never completely goes away, leaving my face looking a little flushed. However, when it brightens and spreads I KNOW my disease is flaring.

I have still been feeling very achy. It isn’t much fun, but I’m just trying to keep moving.

I got in contact with my rheumatologist’s office yesterday and we are going to up my Prednisone for awhile. Not really what I want to do, but I also want to feel better.

Here’s hoping today is a better day!

Fa·tigue [fuh-teeg] noun

I slept 11 hours last night, and I could have slept more.

The last few days have been pretty busy for me at work.  By Wednesday night I felt wasted.  Not binge-drinking wasted.  A wasted where your whole body hurts and is exhausted at the same time.  I slept about 7 hours that night, and woke up the next morning already tired.

It affects your brain, too.  You feel cloudy and tired and you can’t think clearly.  I left the house yesterday morning ready to go to work, panicked and drove all the way back to the house thinking I had forgotten to put makeup on.  Got back, looked in the mirror and realized I HAD in fact completely put it on.  Scary.  Your brain isn’t making all the connections it should.

It can leave you feeling exhausted, overwhelmed and wondering how you’re going to make it through the day. You just feel weary. And all you want is to have energy and to feel normal.

I don’t feel like this every day.  But when I am going through a flare, if I overdo it, or don’t take care of myself… this is how it is.  It isn’t a case of just wanting to sleep in a little, being lazy or is something that is all in my head.

Fatigue isn’t a symptom that shows on the outside.  You may look a little tired, but most people can’t see it as they would a rash or hair loss.  It is a silent symptom that unless you tell someone, they aren’t going to even know you have.

Unfortunately, as many as 80% of lupus patients experience fatigue. Experts aren’t sure what actually causes the fatigue, and they don’t really know how to treat it.  Sometimes people can have their lupus symptoms and problems pretty well under control, but still have fatigue.  This is just another lupus mystery.

So, as someone with lupus, what can you do?

  • Get plenty of sleep.  Aim for 10 hours.  See how you do with different amounts of sleep.  Find your happy spot and aim for that or more every night.
  • Try to get some naps in! I am not a napper, but if I am feeling tired, I will try to take a nap.
  • Don’t overdo it with activities and exhaust yourself. But, that doesn’t mean do nothing.  Try to stay active and if you can, get in some exercise.  Just take a short walk!
  • Prioritize your activities.  Figure out what you have to do that day that is important. Put your energy towards that activity or event and let the rest go if you don’t have the energy to do anything else.  Be flexible and don’t be hard on yourself if you aren’t able to get everything done that you would have liked.  Do it another time.  Let it be.
  • Eat real food.  Eat foods that are going to give you energy and not bog you down.  Vegetables, fruits, protein. Real, simple food.  Drink plenty of water to stay hydrated. Don’t rely on caffeine or other stimulants.  They aren’t going to help in the long run, and you’ll only end up crashing later on.
  • Communicate with your loved ones when you are feeling tired.  Try not to complain but just explain that you are tired, and that you are doing the best you can with what energy you have.

Try not to feel overwhelmed.  Do what you can and just let the rest of it go.

Get some sleep!

Your Life with Lupus

A lot has been thrown at you.  You hear all kinds of terms thrown around. You may still be in shock. Your life has taken a drastic turn. Your doctor just told you that you have an autoimmune disease.

You have lupus.

What do you do now?

There are important things you can do… right now!!

 

Whenever something unexpected comes up in my life, I like to have a plan of action. There are a ton of resources on the web, but I would like to tell you what helped ME.

  1. Find a second opinion. Even if just to ease your mind.
  2. Find a doctor you feel you can trust, and who knows what they are talking about. This is your health that is on the line, and you need to be able to work with your team of doctors to get the best help you can.
  3. Educate yourself. Talk with your doctors first, and don’t be afraid to ask questions. Read respected resources on the internet. Find books at your library and online.
  4. Talk with your loved ones and ask for their support. Keep them updated and let them know how they can support you. Don’t be afraid to ask for help, or accept help that is offered. Share The Spoon Theory with them.
  5. Allow yourself to feel the different emotions you may feel… Anger, sadness, relief that you finally have a diagnosis. Your life may change in a lot of ways. Work through your feelings and try to learn to live with the person you are now.
  6. Prioritize your time and energy. Figure out what is important to do, and let the rest of it go if you’re tired. Don’t be afraid to say no!
  7. Find out what triggers your flares, and do your best to avoid those triggers.
  8. Get plenty of rest and eat properly. Your body needs fuel to create energy and to heal. Eat real food and aim for getting nutrients! Get rid of the junk!
  9. Keep moving. Mild to moderate exercise is best. Even if you only have the energy for a 5 minute walk, do what you can.
  10. De-stress as much as you can. Meditation, yoga, massages, relaxing baths, time with your family and friends… whatever helps to make you happy and lower your stress is great.
  11. Remember to be thankful and grateful for the life you do have. Don’t forget to give back. Giving can help to give your life purpose and meaning. It can help to make the bad times not as bad, and definitely give you more good in return.
  12. And last, but not least: stay positive. Having a negative mindset, and letting yourself get stressed out will just tax your body more. Stay positive and keep hope for your future. There is research being done about lupus. New treatments and breakthroughs are being made. You will find support and love. I promise there is hope for me and for you.

If you ever have any questions, feel free to send me an email! I am open and willing to answer anything I can help with, or together we can find the answers.

Your friend through this journey,
Erin

 

What do you wish someone had told you when you were first diagnosed with lupus?

What insight have you gained along the way?

Lupus & Hair Loss

According to the LFA, “Hair loss occurs in about 45 percent of people with lupus at some time during the course of their disease.”

A silly cartoon, but I do think this is probably what I look like in the bathroom every day.

The loss of your hair, especially if you are female can feel very devastating.  It was one of my first symptoms of lupus and definitely one of the most noticeable to me.

There are two different types of hair loss (alopecia) with lupus.  One type is the hair loss associated with discoid lupus, which is normally caused by a rash which can lead to scarring.  Both the rash and the scarring can cause the hair loss.  In this case, the hair loss is normally irreversible, which is why early detection with discoid lupus is so important!

The type of hair loss I’ll mainly be talking about today is caused by systemic lupus.  Your body attacks your hair follicles.

Poor, poor hair follicles.

It is normally loss all over the scalp, but can fall out in patches.  When I had my first real flare, I had loss over most of my scalp, but had one half inch bald spot!  Sometimes even just tugging on your hair can cause it to fall out into your hand. This type of hair loss is normally reversible once you get your flare under control.

Sometimes drugs, such as prednisone and other immunosuppressive therapies may cause the hair loss and may make your hair thin or brittle.  Once you stop the medication, your hair loss should stop.

So, what can you do for SLE hair loss?

  • Get your disease under control.  I know, I know, if you could, you would.  Just do your best, and sometimes the knowledge that you’re doing all you can will help your peace of mind.
  • Try not to tax your hair and scalp.  Some experts say that dyeing your hair and having perms etc are not going to cause more damage and loss… but I can’t imagine that all those chemicals are just GREAT for your scalp.  In my own experience I can tell a big difference if I try to be gentle with my hair. I lay off the blow dryer and straightener except for a couple of times a week and try to cut down on my washings.  I may not look like a fashion model, but if it means I will have MORE of my own hair, so be it.  Besides, air dried hair just goes along with the malar rash, right? 🙂
  • Take some biotin.  My rheumatologist recommends taking it, and I notice my hair has grown faster (as do my nails) which is great if you’re getting any new growth.  Or, if you’d like to get more biotin from diet alone, up your intake of brewer’s yeast, nutritional yeast, liver, cauliflower, salmon, bananas, carrots, egg yolks, sardines, legumes, and mushrooms.
  • Don’t use Rogaine.  It isn’t made for this type of hair loss.  Ask your doctor about it and he/she will tell you the same thing.
  • If your hair loss is significant, don’t be afraid to look into a hair piece or wig.  Be careful with extensions as they can be damaging to your hair, but there are all kinds of clip in hair pieces and extensions.
  • Be patient.  Unfortunately, hair loss happens fast, and regrowth can take awhile.  I think this is just another way we learn to really appreciate our health.  I appreciate every little new hair I get. 🙂

I have been losing my hair the last few months, and though it isn’t super noticeable to others, it is to me.  It is scary and frustrating.  I am doubly scared because I am getting married in about 6 months and I’d like to have some hair on my head!  I try not to stress about it, because stress doesn’t help my flare AT ALL.

A couple weeks ago, my fiance and I were getting ready to leave to go out. I combed my hair after a shower and my hands were FULL of hair.  I couldn’t help it.  I cried.

My fiance saw me and just hugged me a long time.  He said he loved me, hair or not.

I’m not going to tell you it isn’t tough.  But be strong, because you are.  You can deal with it.  Your hair does not determine your worth as a woman.

Hair or no hair, I’m going to look fierce at my wedding.