Tag Archives: autoimmune disease

6 Simple Ways to Cope with a Chronic Disease

If you’re dealing with a chronic disease (lupus or otherwise) there are so many things that are out of your control and it can be hard to find anything good.  If you’re dealing with an active flare, or just the normal every day aspects of disease, it can be hard to focus on anything else.  I have found that it is the simple things that keep me going… and happier.

  1. badesalz-1620261_1920Taking a hot soak in the tub with some epsom salts and/or essential oils.  The salt can help with body aches along with the hot water. It also will help to relieve muscle tension.  I throw the oils in just because I like it to smell good too. 🙂
  2. Drinking lots of water.  Seriously. I try to drink at least 80 oz of water a day.  I know it is good for my kidneys (which I try to keep as healthy as possible).  My brain feels clearer.  I feel less hungry (I eat when I’m stressed, bored or sad).  My body craves it! Plus, my skin always looks the best when I’m been drinking my water regularly. It is one GOOD thing I can do for my body no matter what else is going on.
  3. Watching funny videos on YouTube.  I know this is all stupidly simple stuff, but it works! As a mom I end up watching a lot of toddler cartoons and the news during the day, and maybe a show or two at night… but The Walking Dead isn’t exactly funny and gets my adrenaline going too much.  Watching some stupid videos on Youtube helps take my mind off things for awhile, and most of the time I find something funny and I can finally laugh a little bit.
  4. Going to bed early.  Sometimes you just have to.  My body tells me when I need it. By 6 or 7 pm I feel it. That exhaustion that only people with chronic disease can understand.  You don’t even want to eat or brush your teeth, you just want rest.  Let yourself go to bed early. Everything will still be there tomorrow, but you yourself will feel better and can face it all then.
  5. Look up an inspirational quote for how you’re feeling.  When I need some oomph because I am feeling physically or psychologically garbage-like I will do some Googling and find a quote that really speaks to me.  I try to share them with you all too, because from your emails I know a lot of you go through the same things.  I try my best to focus on that quote for the rest of the day.reading-1142801_1920
  6. Curl up in a comfy chair with a blanket and read a book with a cup of tea or coffee. Now, I haven’t had much time to do this lately, but this is absolutely one of my favorite things to do. No matter the time of year or what is going on, this is a surefire way to help me feel more at ease and help me cope with whatever is going on.

So. Very simple things. And this isn’t all of them, but just a few that are easy to accomplish in a day when you don’t feel like you can do much else.  Take care of yourself! Try to do at least one simple thing to bring a little joy and peace to your day.

What are some things YOU do to help yourself?  Please share!

POP!

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

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We Have News to Report!

Pregnancy Announcement

 

So, now that I am finally into my second trimester, we can tell everyone!!!

 

We found out right away that I was pregnant. In fact, I kind of felt it.  We were in Chicago on a trip for A’s work when I took a test… and it was VERY positive!

Pregnancy Test

 

We of course were elated and our families were so excited.  It was kind of nice to be on vacation (at least a vacation for me) because it gave me time to do all the calling I needed to… doctor’s offices galore!  I wasn’t very far along at that point, but it just felt so awesome to know there a little being growing inside of me! It was so hard not to tell anyone!

 

We had our first ultrasound at 8 weeks and got a cute little picture of the little one… which I still think greatly resembles a baby seahorse.  But everything was looking great, I was feeling pretty good outside of the normal pregnancy stuff!  It was all great news.  🙂

baby1

 

My sister took that great shot of us with the pumpkins for our announcement.  I wasn’t really even showing yet, but we were just too excited to not tell everyone!

Last week, we had our next ultrasound and I had bloodwork for sequential testing.  We were set to meet our perinatologist for the first time and had a quick check up with my ob.  We were only doing the sequential testing as a precaution.  I am only 32, but we just wanted to know for sure if something were going on.

We had our ultrasound first.  We figured it would be routine… check on the baby, get the nuchal measurements and we would meet with the perinatologist and we would be on our way.

The ultrasound tech got started on the ultrasound.  She asked if we had had an ultrasound yet this pregnancy, and I told her yes, we had, the month before.

She replied, “So, then you know there are two in there, right?”

Cue immediate shock on our parts!

Yes, we are having twins!

I started crying and I think A was just in awe.  There are definitely two little babies in there!

Defying Lupus - Twins

They are fraternal twins, each with their own sac and placenta. Everything is looking great so far!

Now that the cat is out of the bag I will update again soon, I promise!

 

Twins Announcement

Lupus and Pregnancy

pregnancy and lupusI’ve always known I’ve wanted children.  It’s never been a question in my mind, I just knew it would be somewhere in my future.  However, once I learned of my lupus diagnosis I had a lot of questions about whether it would be even be possible.

At my last rheumatologist appointment, he gave me the okay to start trying to conceive.  I had been doing some reading, but also needed many questions answered.  I’d like to share what I learned with you!

If you have ANY type of auto-immune issues, you MUST talk with your physician and please use this information as only that… information and not advice or medical orders.

All the changes that come with pregnancy have a huge impact on someone with lupus or other auto-immune issues and so it is very important to discuss with your physician (or team of physicians) when it is safe for you to try and become pregnant. Possible health issues you may have to deal with or treat first?  Hypertension, antiphospholipid antibodies, low platelets, blood clots, kidney or blood sugar issues.  The general rule of thumb is to wait until you have been healthy for at least six months before trying to conceive, this will give you the best chances of having a flare-free pregnancy.

All lupus pregnancies are considered high-risk, and therefore you will be referred to a high-risk obstetrician and a perinatologist (basically a physician specifically for the baby during your pregnancy).  You will also probably need to see your rheumatologist more often.
pregnancy lupus
You have a great responsibility to yourself and your unborn child to pay even more attention to what your body tells you than you normally do.  Normal pregnancies can leave a gal with fatigue and a host of other issues (nausea, body aches, etc) but lupus can add even more difficulties.  Get plenty of sleep and rest.  Eat healthful foods.  Try to keep moving, but don’t over-exert yourself if you are in pain or too tired.  And of course, please don’t smoke, do drugs, drink alcohol, and try to limit your caffeine intake.

What are some possible issues you may face?

  • Lupus flares
  • Miscarriage
  • Stillbirth
  • Preeclampsia
  • HELLP Syndrome
  • Impaired kidney function
  • Intrauterine growth restriction
  • Neonatal lupus in your infant – About 3% of babies born to Lupies will have this.  Most often it will go away, normally when the baby is 6-8 months old.  It usually consists of abnormal blood counts and a rash, but in rare cases the baby may have an abnormal heart rhythm that will require surgery to implant a pacemaker.
  • Preterm delivery – about 50% of pregnancies in Lupies will result in preterm delivery because of lupus complications.

Some women see improvement in their lupus symptoms during pregnancy.  And while flares are reported in about 30% of Lupies, most of them are mild. There are some medications used to treat lupus that cause minimal harm to your baby during pregnancy as they do not cross the placenta.  If you do encounter difficulties, your physicians may discuss some of these possibilities with you. Healthy pregnancies are possible with lupus, it may just take a little more work to get that baby safely in your arms!

Once you have your baby it is just as important to make sure you take great care of yourself.  The changes in hormones and the stress of caring for a newborn are a lot for any new mother, let alone a new mother with lupus.  Rest, healthy eating, and asking for help if you need it are very important.

baby lupus

Hope this may have answered some of your questions about pregnancy and lupus! And while we don’t have any news to report yet, hopefully we will soon!

Protect Yourself!

sun lupus

After 4 days on a Florida beach in 2008 I got a skin rash caused by the sun. At that time doctors just diagnosed me with polymorphic light eruption, or your basic sun sensitivity. Looking back now, we know what really caused this: lupus.

Did you know that over two-thirds of people with lupus have some type of reaction to sunlight and UV rays? These reactions include butterfly rashes, rashes over areas of the body touched by the rays and thirdly, lupus flares.

sun rash lupus collage

Why is this? One job of a normal immune system is to get rid of old, dying or defective cells, which is called apoptosis. When your skin is exposed to ultraviolet light, it may cause your skin cells to die. In lupus patients, apoptosis seems to occur more often which may lead to inflammation in the skin, furthermore leading to a lovely pink rash. Inflammation may then cause a flare which can affect joints, muscles and other organs.

Protection from the sun is an important part of managing your disease, but that does not mean you have to become a vampire and deprive yourself of the outdoors and sunlight! You can still lead a healthy and active outdoor life.

Here are some tips and tricks to protect yourself!

SunscreenSunscreen! Every day, even when the sky is overcast. Make sure to use an SPF of 30 or more. Apply 30 minutes before you head outside, and make sure not to miss any spots. Stay out of the sun during the mid-day hours when the sun is strongest.

Wear a hat to protect your face and neck… but also your scalp! Lupus can cause hair loss or thinning which in turn leaves your scalp less covered. Wearing a hat will take care of this problem.

Get yourself some sun protective clothing. Make sure what you do wear has a tight weave. Normal manufactured cloths may not provide enough protection, but they now have specially made clothing with built-in SPF to help keep UV rays from permeating through to your skin. Be sure to follow the recommended cleaning directions for these particular types of clothing as the SP factor can be decreased dramatically by regular washing and drying.

flor lightStay away from other sources of UV lights including fluorescent lights. And of course, tanning beds are not good for anyone, but are especially terrible for people with lupus.

Get your car and home windows tinted or use screens to help block the suns rays. I spend about 2 hours in my car a day… so you know what is next on my list to get done to my new car!

Be sure to ask your physician about medicines that may you more sensitive to light.

 

Here are some items and ideas I’d still like to try:

UV Blocking Sun Sleeves

A nice, big sun blocking patio umbrella. So I can sit outside without worrying about the sun.

A 360 degree sun protecting chair!

Rit Sun Guard Laundry Treatment UV Protectant

What are some things you do to protect yourself from the sun?

sun protection for lupus

How Healthy is your Liver?

Just when you think things are going well with you Lupie-health-wise!

I had my regularly yearly physical with my PCP this past week.  I had normal bloodwork done and a lot looked the same: low white blood cell count, (mainly neutrophils, my norm) a little anemic, slightly low platelets.  Actually pretty normal/healthy for me.

What wasn’t normal? My liver enzymes.

liver

A couple of years ago when I was having gallbladder issues, my enzymes were slightly elevated which led my doctors to know something was going on, along with the gallbladder attacks I was having.  Once I had my gallbladder surgery, they evened out and were in the normal ranges directly after my surgery, and then again when I had my physical bloodwork last year.

The highest my AST was 43 IU/L previously, this time: 83.  Normal is 12-32 IU/L.

My ALT? Normal is 4-36 my highest before was 61 IU/L.  This time? 127!

WTH?  I am not a heavy drinker (normally 1-2 glasses a wine a week, 3-4 at the most) and do not take a lot of Tylenol or ibuprofen. I have still been taking Lexapro, and so we are reducing my dose to see if that will help.

I’ve been having some abdominal pain (not liver area though, more on my left side) and hives.  My PCP ordered an abdominal ultrasound for me, and everything came back normal.  I am beginning to wonder if it is a digestive issue, mainly gluten intolerance.  It would make sense as the BEST I have ever felt was when I was eating strict Paleo.

I see my rheumatologist Tuesday morning and have more bloodwork.  I am going to talk with him about being tested for gluten intolerance/Celiac Disease.  Unless they have any other bright ideas.

I am just trying to focus on being positive, and hopeful that we will figure out what is going on. I have not been having any other Lupus flare symptoms (knock on wood) and I have been off Prednisone for over 2 months now, which is darn exciting!  Plus I have been learning a lot about the liver.  🙂

I WILL get some answers and try to be as healthy as I can in the meantime!

healthy-liver

Anyone else out there have any liver issues?

What is your experience with gluten intolerance or Celiac Disease?