An Update from Jen

Hello everyone!

It has been quite a while since my first entry.

Truth to be told, so much has happened between then and now and I have no idea where to start!

Let me start off with the month of March.

I started feeling chest pain and it didn't go away overnight. But before I continue let me give you a word of advice: NEVER leave chest pain unattended, it could be just that chest pain or it could be something major and you don't want it to be something major. You know that saying. "Better safe than sorry"

In the morning I had to choice but to go to the ER when I saw the pain wasn't going anywhere, and when I got there, they suspected I was having a heart attack. Blood Pressure sky high elevated, pain irradiating to under my left breast, arm and left leg pain, neck and lower back pain, etc.

They started off testing my Heart Failure enzymes which came back off the charts, had a chest X-Ray, then a chest with contrast and the last thing I know, a full Medicine Team is on top of me, and am getting admitted.

Everyday I had to give blood 3 times a day, get a ton of meds for everything a day and slept none of the time I was there. That's without adding the endless amount of hours I spent crying because I missed my kids and husband.

after nearly 4 weeks in the hospital, I was finally allowed to go home. Just in time for my next Benlysta infusion. (For those of you who aren't familiar with Benlysta, you should look it up. A miracle drug, and the first approved specifically for Lupus in over 55 years by the FDA)

The next day, I went to Memorial, all ready for my Infusion. Everything went fine through my infusion. First to avoid the itch, we started it at 75 drops per minute increasing 50 drops every 15 minutes. Over the curse of 3.5 hours, I was done with y infusion, my vitals where normal, and I was sent home.

Little did I know.

The next morning, I woke up with the same chest pain that was haunting me 4 weeks before my infusion.

Having had my chemo infusion in Memorial, the nurses at Evans Army Community Hospital, advised me to go to Memorial. 

Once I got there, the same story started all over again, and I was admitted for another 3 weeks, and since I got home, I have been on and off the hospital at least 5 times.

I am currently home and I have been in total at least 9-10 days all together but I'm enjoying every second of it.

I had my Benlysta Infusion last Friday and it has given me enough energy to go to the Zoo, the Aquarium and went out to eat with my family.

I wont deny that I'm a little exhausted but it's all worth it and even though, Lupus has reached my heart and its the cause of the issues I am experiencing rightnow; I won't let it win.

I might have bad days like the rest of you, but I can let it kick my butt and let it define me or I can kick Lupus's butt to the curve and show that my determination to live is bigger than its will to put e on my knees.

I am so thankful for having 2 amazing ladies that have been praying for me and cheering me up from the sidelines, giving me love and hope to make it another day.

My Lupus Sisters are everything to me and I am more than blessed to have found them and have them in my life.

I believe we can achieve many things together and already are touching many lives. But a lot of the merit if not most, goes to Melissa aka Missie. She has done most of the work and she is an example to follow. She goes through so much on her day to day basis with her seizures and taking care of a family and still has the energy to do all that she does.

If you can, please leave a word of kudos to her for all that she does, she is really amazing.

Also, don't forget to follow us in Twitter, Instagram and Facebook. We also have bracelets available with our logo available for sale. They are beautiful!

Lots of love, Spoon dust and prayers for all.

I am Jen McCulley-Montes. A Lupus survivor.

I may have Lupus, but Lupus doesn't have me!

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I am Jmona, A Lupus survivor. 

I may have Lupus, but Lupus doesn't have me!