willows4u

A response to a post I made has me feeling horrible. The fact of the matter is that no one knows the entire story of anyone's life on here. What you read is only half the story.I have been verbally...

Today has been a bad Lupus day. I hurt and I feel like I have not slept in years. Ugh! I am feeling very emotional and sad.I was diagnosed with Lupus in 2004. It put a strain on my marriage but it...

Well, no infusion today. The clinic called and said that they did not have any spare medication for me. Blah!My parents know everything that is going on with my marriage. Mostly because I had to...

The pharmacy called me at 4:30 to tell me they were ready to set up delivery of my infusion medication to the clinic. Um, I am scheduled tomorrow morning for the infusion. They said they would see if...

It has been a while since I posted a journal entry.In April 2015, I was finally able to start Benlysta infusions for Lupus. The first few infusions were brutal. Flu-like feeling, extreme fatigue,...

Well, it is 4:30am. I am awake. Still had another whole hour to go before the alarm went off and I had to start moving my joints around before getting up and getting the kids ready for school. I woke...

It has been an up and down kinda week so far. On Tuesday, I got my Benlysta co-pay card. I called and ordered my meds which were shipped next day. Got the vials on Wednesday. I can't say I believe...

Well, I got a large Fed Ex envelope in the mail today. I opened it to find a copay assistance mastercard for Benlysta. It is about F***ING time something went my way. I scheduled shipment of the...

All three of my kids had school yesterday. My little one only goes to kindergarten on Tuesdays and Thursdays and occassional Mondays. Supposed to be every other but with the rotation for the other...

Well, I have been off work for nearly a month now. I still hurt and I am still tired but I have noticed a slight improvement in the level of fatigue. When I am tired, I lay down instead of facing a...

I have been off work now for two weeks. I have noticed a slight improvement in my energy level but that is probably because when I get tired, I lay down. I don't have to push through a 12 hour shift...

Well, it is official!!! I have a new label. It's not "mom". It's not "nurse". It is "disabled".I saw the employee health doctor at work today. He watched me for a few seconds and from that was able...

Yesterday I had the functional ability test. What a waist of time!! I was in so much pain and so exhausted after the test that I came home, slept for 3 hours, got up for 3 hours, then went back to...

Well, yesterday I stood myself up and did what I had to do to get what needed to be done, done....but then I got pushed back down again!!Got a call from my nurse manager. Some of my certifications...

Today pretty much sucked!! I woke up exhausted and sore with a 12 hour shift ahead of me. I kept pushing through like I always do.I have been trying to figure out how much longer I can keep doing...