Hello my fellow Lupus livers!!! I am so happy to be starting this blog. First let me introduce myself. My name is Kenya Lonesome. I am a 26 year old female and I have Lupus. I was diagnosed in 2001 when my daughter was diagnosed with third degree congenital heart block inutero. It was a very trying time for me because I was a young mother (19) and I had no idea what the hell Lupus was. There were a lot of ups and downs with my daughter but she made it and now has a pacemaker but is a healthy 8 year old child!!! I felt strong!!!
In 2004, after I had my second daughter, My health went down hill. I lost 90 pounds. I couldn't breastfeed as long as I wanted because I was so weak and in so much pain. I was put on high dose prednisone (our miracle but destructive drug). Of course I gained weight (160 lbs...and I'm 5'4 ugh). I felt stupendous. I was weened off the prednisone. During this time I was in school, taking care of my kids, working, and dealing with my illness. Guess what this is...STRESSSSSSSS. Our worst enemy!!! In 2007 I suffered a stroke that affected my speech. The stroke was caused by a clot that was on my heart valve due to endocarditis and a protein S deficiency. It was SCARY. Fortunately I recovered but had mini strokes called TIA's.
This was a major event, besides the birth's of my children, that happened in my life. After that many health problems surfaced. High blood pressure, stage 5 kidney failure, pleuritis, thrombocytopenia (low platelets), avascular necrosis of the hip (due to the high dose steroids), a hip replacement (due to the avascular necrosis), shingles, hair loss, joint pain, depression, tiredness, lupus fog (when you forget or can't come up with words right away), and most important dealing with Lupus.
So This blog is my experiences day to day with Lupus. I would love to hear what other people are dealing with. Anything from relationships, to family, to school, to you just want to rant! I am and the world is here for ya!
*smooches* xoxoxo
Kenya Lonesome
Hey lady! i think you starting this blog is very forthcoming and good hearted of you. Same way i happen to stumble upon a pic that made me ask if you had lupus, hopefully someone else out there may have it and stumble across this blog just to talk, and can share what they know and their experiences. :)
ReplyDeleteCongrats on your first post, Kenya. My mother has also had Lupus since I was a baby. It's rough to say the least. It's been in remission so she's doing well day to day now. I'm sure a lot of people will draw a lot of support and knowledge from your blog.
ReplyDeleteWow. I am so happy that you guys are aware of it. Demetri I'm happy she's still in remission. Hopefully one day I will be too. Danielle thanks a lot and stay strong
ReplyDeleteCheck back for more information coming soon.
Hey Kenya,
ReplyDeleteI'm really glad that after all of these obstacles you were able to maintain a positive attitude. I don't know many people that are like you. I'm glad you have started your blog, expressing your trials and tribulations of your illness. I think your words and experiences will definitely help others going through similar problems and stresses. You have definitely given me hope, in my own situation even though I know it is nothing like you have been through in the past few months, even years. I wish you a lot of luck and keep writing. To me, you're still a writer with a great passion. A few months back we recently, reconnected as associates on a surface level, putting everything behind us. I know now, why your spirit has been and will always be carefree. "Why stress the small things in life? Life is too short," you said.
I really look forward to reading more.
Chastidee
@ chaste *BBM HUG*
ReplyDelete