All Blog Posts (376)

Dear Friends and Family of LifewithLupus,

As you well know, living with lupus can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!

Explore more how our community had helped members face the…

...well, I was prepped and ready to go. But was impacted and had to go home. Have to do this mess all over again next month!!! I was so sick when I got home, I felt like I had the flu. I can't explain, how bad I felt. It wasn't until evening that I started in with hot flashes and cold chills. My feet got so hot they felt like they were on fire!! My skin felt tingly and I got a migraine. Maybe all that…

My test results came back good, no nerve damage in my arms.  Doctor is now saying that I have Fibro along with Lupus.  The numbness in my fingers are caused by the swelling and water retention ??? I tried to come off the prednisone again but with no luck, had to go back up to 10mg everyday.  What should I do now ?? I am still trying to wrap my head around having Lupus and now this.  My family already think I am "faking" the Lupus part (I've explained this in a earlier blog).  

Today I attended my cousins funeral while it was painful to say goodbye it was joyful to hear how she persevered through the pain of MS.  I learned that even with her pain, her inability to walk sometimes, being blind in one eye and just fighting MS to the end you would never know she had a disability.  She walked, talked, smiled and encouraged everyone she came in contact with in such a graceful way.  It made me start to think about how I'm handling my…

I accidently used dirt to pepper the meatballs back in 1986; my daughter had filled an empty pepper tin with sand to stock her plastic kitchen set and brought it in while I was cooking. I didn't realize it was dirt until I bit into sand. But the crazy thing is everyone had started to eat before I got there and they loved the meatballs.

Since that day I am usually careful about what goes into the soup pot.

The other night I was already in mid-pour when I caught myself…

I have been trying for days to get over this fatigue that I am feeling, the problem that I am having is trying to accomplish housework.  I have not been able to complete any task that I start.  To understand why this bothers me, I must first confess to being a perfectionist.  I don't have a spotless house but I believe that everything has it's place and that the bathroom and kitchen are the two most important places to keep clean.  I may be wrong with that but that is how I grew up.  Now I…

As all my friends know i have been having trouble with having MRSA in a few places, well i went back to the doctors on Thursday, having got the day wrong and going the day before, i did feel silly. Anyway i have been given a couple more weeks of antibiotics, and some stronger pain killers, and a steroid injection, and have to go back in a couple of weeks time. I also have to get some bloods done, and have an appointment with my Rheumy on the 1st of March, so things are being done, it is…

For years the pain in my back was so excruciating that it became the center of my life. I was either focused on the pain or doing something to distract myself from the pain. At some point my mind became convinced that if I could just get the pain down to a more bearable level then I would feel wonderful.  Well, the back is now manageable.  My pain management physician has done his part and my surgeon has been great. Yet, I still feel much less than well.  

Of course all that means is…

For months I have been complaining about my favorite pair of eyeglasses. I fussed that somehow the lenses had gotten scratched because I could not see through them no matter how hard I worked at cleaning them.

Today I went to the ophthalmologist for my regular Plaquenil check-up. He told me I have cataracts. Well now I know why driving and reading have become more difficult. There are some cloudy lenses, they just are in the glasses.

Now I have to decided when…

It looked like a miniature Tyrannosaurus Rex, or maybe the bones of a large bird.

But if it was a bird, did it have “ribs” in its wings? I don’t know much about dinosaurs.

The harder I looked at it the more I was confused. And the more disturbed.

I thought it might be a giant bug that had mutated from radio active poisoning…or too much food dye and pesticides.

“That’s it.” I said, “I have to get up and find out what it is.”

I approached with caution and had…

I hate waiting on test results (the nerve conduction test they did on my arms)..  I am going Monday to hear the results.  However a new (old) condition has come up and I am truly thinking it's because my immune system is  shot, I just am getting over a case of Pneumonia not as bad as last year but it knocked me down for a little bit, plus threw my back out a week ago.   Now Cellulitis has come up on my bad leg (this is the third time in 13 months).  I have around 15 blisters that has come up…

First, THANKS TO ALL who gave me birthday greetings, they really brought me smiles!

Last week I had a bad fall. My whole body weight fell on my neck and back of my head, legs in the air. I fell from ceiling height. I have a slight concussion and pretty painful spine, but I'll put up with that, just being grateful that it wasn't worse. The way I fell, I seriously could have broken my neck and fractured my skull. I have…

I tried to tell the story but decided it is much better said coming from the one we have missed:

A Note From Kaylhan (re: the  accident)

I just feel silly. Only a fender bender, no one hurt but me and the dr says if I hadn't panicked and stiffened up, I might have gotten off with bruises and a sprain....but w/ my history of auto accidents, I am a real coward about them.

You can mention me to anyone who asks, I don't mind honestly, but warn them I am very…

Woke up this morning with the same headache that I've had for the past three days but I say to myself...Keep smiling.  My joints are aching and I'm so tired I can't stay awake but I say to myself....Keep smiling.  Don't quite understand the things that transpired today but inspite of it all I say to myself....Keep Smiling.  Lord I thank you for this day and for so many other opportunities to wake up and enjoy the sunshine, so many didn't wake up this morning, so many aren't able to keep on…

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

I've been invited to go watch the superbowl over a friends house but I'm just not feeling well today and I decide to decline the invitation.   Then it starts...that look like you really don't like all that tired or sick, can you please just go to watch the game.  It would mean so much to them (the couples house I was invited to go to)....well what about the fact that I just said I'm not feeling well today.  My mom asked me to go with her to get her taxes done.  Wouldn't you know that it…

When you get a grip on life something happens and reminds you that life is way to short.  I had a loss this week in the church family. It was sudden and unexpected. I feel like it was a gift to have known this person and I can't help but think how hard it is to have this much my life and not feel thinkful everyday. I am so thankful with the problems, pain, health issues and hurt.  I am not going to waste a day feeling sorry for myself cause I have to be better than that. God gives me the…