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My name is Holly, I am 28 years old and I am very happy I found this community! In March I was diagnosed with SLE, Rheumatoid Arthritis, Connective Tissue Disease & Fibromyalgia. I have been sick for about 8 to 9 years, have been to countless doctors & basically was told I was crazy & that there was nothing wrong with me. As the years went by my health continued to get worse & my energy was nonexistent but still no answers! Eventually I had to drop out of college & lost countless jobs. I had numerous tests done, even my family & friends began to doubt the legitimacy of my illness! About a year ago I woke up at 4am with the worst pains in my joints, I drove myself to the ER & they discovered that my ANA levels were through the roof! They gave me pain meds & told me I needed to see a Rheumatologist, I live in Key West, FL & we only have one on the island so I had to wait four months to get in, as soon as she looked at me she knew I had Lupus! Classic butterfly rash, purple hands & feet, finally someone believed me! She ran the tests & sure enough I had all the diseases I mentioned above. Although it was devastating, it was also a huge relief that I wasn't crazy & that finally this wonderful woman listened to me & I finally had answers! It has been a LONG road, I am sure a lot of you can relate & I can't wait to share stories & information! I finally got Medicaid & just got my 1st Disability check, but I miss working terribly & am very lonely!
 

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Hi there and welcome to the site!

You certainly have been through a lot, but I'm glad that finally things worked out with a diagoses and treatment!

I do hope you find this site friendly and informative and feel free to pop into chat too!

Take care,
 

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Hiya Holly and welcome, sounds as if you have had an interesting journey..:( glad you have finally been given some proper medical time and attention and I hope you are now on good meds to help you function the best you can. It is such a long journey to diagnosis.. well done for your perseverance... I wish you all the best and don't forget you can always pop in here for support, advice and kind humour!! There is the chat room too...take care,
Claire X
 

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Hi Holly and welcome to the site. Sorry for your diagnosis though. This site is very friendly and full of interesting info. It can be hard to adapt to not working, but it can give you more time to do the things you enjoy. Join us in chat some time!

Deb
 

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Hi holly, I too lived in Key West when I was diagnosed with my Mixed connective tissue disease and I am fairly certain I know which doctor you are talking about. she is caring and will do just about anything to make her patients feel more comfortable. But she is no Rhuemy if I remember correctly, she just specialises in it. I made the journey to Miami for help too but found a doc that was less than helpful. finally settling in to New England I fouond a terrific rhuemy who has done wonders for my care. We are considering moving back to Key West this year and would love to meet with you if we do.
 

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Welcome to the site Holly. I am glad you have joined us. The site is a great way to meet others who understand what you are going through. The chat room can really be a quick pick me up on a bad day, you should really check it out.

Once your medications get the disease under control better you will be able to lead a more normal life. After being diagnosed I was able to return to the workforce for many years. Hopefully that will be the case for you also.

Take care,
Lazylegs
 
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