Painsomnia | Just A Lupie Day

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Painsomnia.  Have you experienced this?  You are completely exhausted but in too much pain to sleep.  

That’s been me for the past few weeks.  

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Malar Rash | Just A Lupie Day

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This is what my malar rash looks like on a good day.  Called the “butterfly rash” because of the shape across the cheeks, the malar rash can look different from case to case.  It can even look different from day-to-day, in my experience.

If I have had a rough day, for example, I notice right away that my malar rash is more prominent, redder and at times the skin is hotter than heck!  Most times,  I cover with makeup, just to see it reappear later in the day.  However,  I do save a bundle on blush! I haven’t needed it for over 2 years now…lol

I {heart} ice-cube trays | Just A Lupie Day

lemon-ice-cubesI {heart} ice-cube trays.

Seriously, I do. One of my favorite things to do is cut up pineapple, oranges, limes, lemons and berries and place them in the ice-cube tray, then add water or fruit juice.  Freeze.  Then I add them to plain or seltzer water each day for a refreshing drink!  It also helps when I have fruit that is ready to be eaten with no one to eat it.  🙂  I like to use fruits that have benefits to my specific health situation.  I am always watching what I eat to see what causes flares.  The ones I like the most are blueberries, strawberries, citrus fruit and pineapple.

Last night, I was making my lemon ice to use in my water and my oldest son decided I was crazy!  He can’t understand why I would want to make this!  Teenagers.  sigh…

Love / Hate Prednisone | Just A Lupie Day | Lupus Medications

Love / Hate Prednisone | Just A Lupie Day | Lupus Medications

It is really a love/hate relationship. Prednisone is the most commonly prescribed steroid for lupus.  It works quickly to decrease the swelling, warmth, tenderness, and pain that are associated with inflammation, by lessening the immune system’s response.

Since it is a steroid, it produces a variety of not so fun side effects. Overall, the benefits do outweigh the discomfort of the side effects, but it is really hard to deal with them at times.  The most common changes are in appearance and mood.  A moon-face, weight gain, acne & fluid retention are some of the most common physical changes, while irritability, agitation, excitability & insomnia are the most common changes in mood.

Swelling | Prednisone | Just A Lupie Day

I am newly diagnosed, and so my rheumy prescribed Prednisone at my first appointment, prior to a diagnosis.  The difference in how I felt was noticeable within  a day of taking my first 20mg dose.  It did not relieve all my symptoms completely, but I felt better than I had in years.  I actually had some energy, and my joint pain went from an 8 to a 4 on the pain scale.

Since I was not yet diagnosed, my rheumy prescribed a week at 20mg and then a week at 10mg. Believe me when I tell you that I could tell the difference between 20mg & 10mg!  My 4 migrated back up to about a 7 and when I finished the 10mg course, I was up to a 9 again.  He prescribed Plaquenil about 2 weeks later (more on that in another post), and then put me back on 10mg until the Plaquenil starts working.

I totally can tell the difference.  I am thankful for it, even though I can be quite irritable, excitable and agitated.  My husband and kids are saints, they deal with me on a daily basis.

🙂  More next time…

Lupus Awareness Month – Fact of the Day #31

Today people with lupus are leading healthier lives and living longer than at any time in history, thanks to researchers who continue to discover more about the underlying science of the immune system.

http://www.lupus.org/newsite/pages/lupus-awareness-facts.html

Lupus Awareness Month – Fact of the Day #30

The first ever Congressional Lupus Caucus was established in July of 2012 and is co-chaired by Representatives Tom Rooney (FL), Jim Moran (VA), Ileana Ros-Lehtinen (FL), and William Keating (MA). To this date, 32 representatives have joined the caucus.

http://www.lupus.org/newsite/pages/lupus-awareness-facts.html

Lupus Awareness Month – Fact of the Day #29

With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to a normal lifespan.

http://www.lupus.org/newsite/pages/lupus-awareness-facts.html

Lupus Awareness Month – Fact of the Day #28

Advancing technology and better understanding of the disease have improved pregnancy outcomes. Today, 80 percent of women with inactive lupus can have successful pregnancies.

http://www.lupus.org/newsite/pages/lupus-awareness-facts.html