Saturday, May 11, 2019

Lupus Awarness Month

One thing I do not do is share my story for attention! I do share my story to raise awareness ! Also if someone like me happens upon it! 
I had heard the name lupus even in my family. Still I had no clue what this disease was until I sat across from a cardiologist who told me I am almost certain you have lupus! You need to see a rhuemotoligist.
I know my jaw hit the floor. I had just had a thorocotamy. Major heart and lungs surgery at the same time! 
Now your telling me this  is probably not the end of being sick.... 
After one really bad experience with a rhuemotologist and being sent time to oncologist. I was sent to an amazing rheumotoligist that found answers that were hard to hear. Still once we have had them so many things made sense
The very first thing I did was going home and Google SLE Lupus! Ooh my word my heart was not ready it was a lot! A lot more than I ever expected. 
I learned to make list and ask lots and lots of questions!
However when we started telling people even before we knew about lupus.  If I mentioned the first thing that they would say is well you look good! As if I had make-up on and fixed my hair for the day. They thought I felt fine.... No matter how bad I felt! I will never ever forget this one Sunday I was burning up with a fever and I put just make-up on to hide my butterfly rash and pulled my hair up. When I walked in the door, someone looked at me and said Mrs. Shellie you don't look so good are you sure you should have be here? I looked at him and said with tears streaming down my face. I said I feel this way every Sunday almost.I try to put make-up on and fix my hair. Put a smile on my face and pretend I am okay. So I can be here and serve. My illness does not make an appointment before it decides to flare! It just shows up and it is never a convenient. So the last thing someone with a chronic illness wants to hear. When you tell them you feel bad is well you look good!
So let me give you a glimpse into the life of lupus lupus.
Here are just some of the symptoms 
extreme fatigue (You never know how tired you are until you need a nap after a shower! lol)
painful joints
Muscle pain fever
extreme weight loss or weight gain
swelling  in feet,hands legs, around the eyes
pain in chest upon deep breathing
butterfly rash on face 
rashes on the body
brain fog
sun or light sensitivity
hair loss
sleepless nights
abnormal blood clotting
fingers or toes turning white or blue when cold
mouth and nose ulcers
low grade fevers

Lupus effects and can permanently damage the following:
Mouth -  painful ulcers
Skin- butterfly rash and red patches 
Kidney - lupus nephritis  
Heart- Myocarditis &  Periarditis 
Lungs- pleurisy & pulmonary embolism
GI System- gastroperisis, irritable bowel, severe abdominal pain, constipation,& diarrhea
Blood- inflamed vessels, high blood pressure, anemia, blood clotting problem, blood clots
Muscles and Joints- pain and swelling in joints, arthritis, and inflammation.
Brain- memory problems, brain fog,headaches dizziness, vision problems, strokes, & seizures
When Lupus attacks our major organs. Our diagnosis is changed to SlE Lupus with organ involvement!
This becomes really scary  fast! I like to explain it like I am allergic to myself!

Most Lupus fighters will down play their symptoms so their loved ones will not worry ! The last thing we want to see on some one we loves face is fear of loosing us.
Lupus is a scary unpredictable disease! We never know what is coming next.
My lupus has effected my heart and lungs. My hear that has been effected the worse. I recently spent 23 days in the hospital and was diagnosed with constrictive pericarditis of the heart. The only cure is a very dangerous surgery. Mine has not reached the point of needing surgery! 
We pray it never does!
I was diagnosed this week with collagen vascular disease it causes inflammation of nearby joints. Pedal Edema
which causes lots of swelling mine is due to my heart! It landed me a 2 night stay in the hospital this week! along with 2 emergency room visits.
aren't my feet lovely!

this was actually after two shots of lasix through IV!
Remember our immune systems are compromised we can not fight germs the way you do! Please if your sick don't visit, kiss, or hug  a lupie!

Lupus is not only hard on us but or families. They have to pick up and do things we used to do! Like in my case laundry, heavy house cleaning, I am unable to drive, and depending on the day this list can grow really fast.
For them they are forever wondering and worried about me. You family won't leave me alone for long periods of times. I need a walker and was wheelchair now... Their life as they knew it is forever changed.
I  can't help but feel guilty about it even though I didn't choose it.
So I encourage you to check out this website and learn more about lupus!
Lupus Foundation of America
May 17 is wear purple day to support some one you love who has lupus! It's to help raise awareness and fight for a cure!
I hope you will stand with me! I will be wearing our pleasure that day for me!
Help us fight for another day! I take 17 medications a day to control my lupus! Benlysta is on of them it's the only drug of it's kind made specifically for Lupus and that has been 50 years ago. 
This just apart of what we go through! There are more days than not I talk my self out of bed! 
Thank you for stopping by! 
~Prayerfully Yours Shellie~

No comments:

Post a Comment

I love to hear from you! Take time to say hello and let me know what you thought!

Merry Christmas 2023

It is hard to imagine that 2023, has slipped away so quickly! I feel like I went to sleep one night, the year slipped away, and I woke up ha...