My Lupus Journey

02/14/2025

I very rarely check this page or add to it. I have tried deleting it but can't find the password and when I try changing the password the links don't work. I do share my health issues on my personal page Nancy Bohlman. I have been suffering from a MRSA infection covering my scalp and ears since July. I have been in and out of the hospital during this time including 12 days and another 10 between December 26 & February 5. Supposedly the MRSA would not have been this severe if I didn't have SLE.

02/05/2024

Go back tiJeanBohlman please

11/09/2023

Jean Godfrey profiles

08/27/2023

Scott Goffena

08/15/2023

05/14/2023

Well we
UT Edwin in hospital
For observation of his Alzheimer's. Be free to go see him. He still loves to visit .just have to talk loud!!

01/22/2023

I am barely living. I spend 95% of my time in bed. I am currently giving myself injections of Benlysta & Methotrexate. I shaved my head several years ago because of all of the bald patches due to painful raw open sores covering so much of my head. The only thing that gives me relief from the pain of my scalp lesions is lidocaine products. I don't think this much lidocaine so close to my brain is very good for me. I post more on my personal page Nancy Bohlman if anyone wants to follow me thier.

11/06/2015

Stress has gotten the best of me. I had my Benlysta infusion last Thursday. I haven't been outside for a walk since the day before.

My mother caught a cold the week before and my dad was starting to get sick on the day of my infusion. On Friday my mother started antibiotics for Bronchitis. On Saturday she fell and broke several ribs.

On Tuesday my Dada cold official turned into bronchitis. He started antibiotics and my mother was put on steroids and muscle relaxers along with her antibiotics and pain meds.

I have been spending as much time in my room as possible. I have a salt lamp, an air purifier with UV light that is suppose to kill germs and I have been running eucalyptus in my diffuser. Today my Himalayan salt pipe arrived and I started using that to. So far I have not caught their cold, but I have been in a terrible Lupus flare. Extreme exhausted, severe joint pain, nausea headaches, trouble breathing and every bone and muscle hurts. I have not even been dressed or out of the house since a week ago today except for my infusion. I feel better today and think I am starting to come out of this bad flare.

I think the stress of surgery being on and off again is getting to me as well as my mother breaking her ribs and trying to keep from catching my parents bronchitis. Maybe my over reactive immune system will keep me from catching this.

I am going to go take a long bath with Epsom salts and a good book from The Cat Who series. I have started doing coloring in adult coloring books, postcards, Christmas cards. When I color I can clear my mind.

I found a place in Mexico that I feel comfortable with for my surgery. Now On don't have a companion to go with me. My mother was going to go with me if I went. By the time she will be well enough to travel that far and spend that many days away from home it will be too late for me to have surgery.

10/15/2015

This is the first year that I don't remember attending any of the NILE events. In the year 2000 I watched the horse sales with a broken back. Last year my dad and I stayed at my aunt's and we attended a few of the events, but this year I am not physically able to go. There is too much walking involved to get from the parking area to the metra. The only events that might be an option if I had a good day would be the events at the Super Barn. Someone could drive me close to the barn and drop me off, but I wouldn't last very long sitting in bleachers. I have been having terribly painful muscle cramps and spasms in every muscle of my body this week. I think it's connected to being dehydrated. I was sick a few days and lost 6 pounds of fluid in one day. Right now I am having those muscle cramps and it seems like I should be recovered by now from bee dehydrated. Last time this happened I was given fluid through IV. I should have done that this time but it's so exhausting traveling to Billings, even though I travel laying down in the back seat.

Even though I haven't seen my own horse in weeks and haven't been out of my jammies in over a week I find comfort in our two dogs. I have been enjoying sitting outside watching the dogs play and reading. In the evenings I can bundle up in blankets and listen to the elk bugle and enjoy our best Montana sky and what h the stars. During the day the birds are singing and drinking in the birdbath. I love watching the changing of colors of the outside solar lights. This evening the howling and yapping of coyotes made me glad I was safe at the house and wondered what poor creature lost its life. In the mornings and early evenings the many bunny rabbits are busy trying to find something to fill their tummies. Prior to this last wonderful rain the bunnies were thick in our lawn since it was the only green grass around. Yesterday I was wondering why I wasn't seeing the rabbits like I had been and finally looked outside of the yard and realized their is short new green grass everywhere and surer enough I started spotting the bunnies. They were finding tender green grass away from the lawn. I am trying to focus on the beautiful things that nature has to offer right in our back yard. The only thing that is missing is a fire in our fire pit. I will just imagine their is one keeping me warm.