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JoanPenfold posted:
Hi,
I am Joan and have had Lupus for about 5 years. It has been a long hard road and I am working hard with my family and my Dr's and my God to improve and some days are much harder than others.

I was recently interviewed on a website for SPF clothing and skin cancer focus as I also have dealt with that the past few years:
http://spfstore.blogspot.com/2012/08/spf-from-heart-series-interview-with.html
This is great to learn about sun exposure and Lupus


A Little About me:
I spent many years nursing and when I got totally burnt out I looked for a new career and used my knowledge to proceed with medical sales. I found my niche' and my love. Then suddenly one day I was feeling funny in the office and went to the ER to find I was having a stroke. This happened several times before I was diagnosed with a clotting disorder, Lupus, and Fibromyalgia. I was working hard to get out of that hospital and back to work when I had a heart catheterization blow in my leg, leaving me in ICU and very ill, fighting for my life. I am fortunate to have my life but was forced to go on disability. I spent my days on line and was introduced to blogs with giveaways! Although all this was fun, I was still missing something. I thought and thought and said to myself, having a review/giveaway blog is a lot like sales and marketing. I had to search for products and services to review, write them up, and offer the giveaways. This seems to have filled my void and thus my site was born! I live in Florida with my husband and my DD. DD just got her BA in Biz. I also have a son in the US Navy. I am proud of both. Then there is my spoiled brat Basset named Freddi, the love of my life. My husband and I have been married 15 years and he is my soulmate. Took me 3 times to find him. He had 2 strokes in December so life is interesting in my household. My poor daughter got our of college, got a job, goes to work, then comes home and cooks dinner. I told her it prepares her for marriage and kids. Neither my husband nor I can stand any length of time standing as it kills our backs with pain. I do try and do as much as I can for her.
I look forward to meeting others, making new and seeing old friends, and learning what you all have to share.

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lupylisa44 responded:
Hi Joan! Welcome!

This is a great place to come for information, ask questions or just to vent. Lupus is such an unpredictable disease, it really helps to have others who completely undersstand what you are going through!

I have had lupus for 29 years and am currently going through a tough time as my lupus nephritis has started to raise it's ugly head again. I have had long remissions and long flares and have been through a lot with this disease, but overall I have had a pretty good life. I, too, am on disability since 2000. I don;t have any kids but I do have 5 dogs. There is never a dull moment with them around! I have a loving man in my life who is also very understanding, but sometimes it is hard for him, especially when I don't feel well for long periods of time.

I am glad you found us and look forward to gtting to know you better!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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Patientofmanydiagnosis replied to lupylisa44's response:
Hello Lisa, First I wanted to congratulate you on being assign for WeMD! I'm only checking it back out for that reason. Go figure I already typed a few sentences and by 1 tap lost and am now having to rewrite. The back ground is still blinding to trigger headaches so not sure how much I'll be on here but sorry, I don't mean to be gripping. I'm actually happy for you! I know it can be hard having priority things to take care of and staying on top of them while dealing with Lupus. I myself have been getting more involved with the Florida lupus foundation and Shine org. Which of course takes spoons. Regarding the survey; I do have anti-phospholipid antibodies 2ndary to SLE and I'm on anticoagulant, (rat poison). I've had a couple DVT's and a few PE's and I think I had a TIA. My routine follow-up with the Hemo. happens to be today. Since my blood has to be checked so often they did finally approve and get me my own finger pricier testing machine for the PT/INR which has helped a lot. No more constant nurse visits or me trying to get to a lab. I wanted to also mention to Joan, depending where in Florida you live, the Florida Lupus Foundation has support groups that meet every month. Let me know if you're interested in attending and maybe we can find one close to where you live.


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