WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

Cheryl

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Im feeling pretty good and you?

4 weeks ago.

Deanne

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Hi Gladys...Hope u r off to a wonderful day and week. IThe last two days or so I have been sad. The physical health stuff is irritated with a strong, vice-like headache and problems with my allergies. My PCP had me see an allergist who did the skin prick test twice. My PCP had already done the blood work for allergerns and after the skin prick tests I figured we were done and i could learn what I was allergic to and get those allergies in control, but no. The allergist's office wanted me to do inner forearm intradermal testing and that was when I just couldn't move forward anymore.

I had to go off all of my steriods and antihistimines for 3 days prior to each skin pricking test and I was absolutely miserable before and afterwards. I got a yeast infection in my underarm area and on the skin of my inner thighs and had a strong asthma attack in the allergist's office following both skin pricking appts. I am too scared to get the intradermal shots.

To make matters worse, all I hear from my own husband and daughter and--yes, I do it to myself--is that I HAVE to lose weight. I feel so HUGE! I cannot stand putting on clothes and wondering if I look decent.

All of this has mounted for me in the last 8 weeks. In all frankness, you are the second person to ask me how I really am feeling. My friend, Paula, who lives across the street from me, has a daughter with severe life-threatening aallergies and she checks on me now and then. She is almost always available to talk and that helps but I try not to burden anyone...which keeps me sad...

My hands and forearms get shooting aching pain almost every morning and randomly during the day. My rheumy has me on Voltaren and so I am hoping it will kick in soon.

Sorry to have rambled...Have an amazing day!

4 weeks ago.

Crystal

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I'm sorry to hear that! It sucks to have worked so hard to be fired for something you can't control.

4 months ago

Tammy

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REMEMBER.. TODAY IS EARTH DAY!!! 

HAVE A GREAT ONE...

GOD BLESS:>)

4 months ago

Cassie

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Thanks Gladys! Hope you are doing well! Your status states you are graduating with honors in May...congratulations!! 

4 months ago

Jayne

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Thanks lady :) It sounds like your gonna be doing the northern suburbs? walk? I always have my team do the downtown Chicago walk for the scenery :) We've been lucky to have nice weather each year too, not to hot, not too cold. So if your up to doing that one in the fall too, I'd LOVE to meet up with you!!!

5 months ago

Nicia

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Thank you gladys!! If you know anyone else that would write please ask them also :) thank you very much!!

5 months ago

Nicia

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Dear We Are Lupus user,

 

Hi my name is Nicia Ramos I am 18 years old and a senior at Blackstone Academy in Pawtucket, R.I.  I am doing my senior project, on the perspective of the patient and the loved ones of patients with lupus.  If you decide you would like to contribute to my book you can write a story, poem, or even a short paragraph about your experience.  The message I want to send out to people after they read my book is that you are not alone and there are many people who have the same feelings as you.

 

If you’re interested these are the following things you must include at the top of the story:

 

• Name – if you wish to be anonyms write anonymous
• Patient or loved one
• Date diagnosed
• How long its been since diagnosed
• specify when the story is from – good or bad day/When the time was

 Example: Bad day/When I first got diagnosed

 

Take pleasure while you are writing because if you enjoy it others will too.  Put your heart into it and let your feelings out.  Remember you are not alone.

 

If you have writers block remember to look back at this to know how my book is being split up: 

 

Patients – 1^st finding out, learning about it, knowing about it

Family - 1^st finding out, learning about it, knowing about it

Friends and Lovers - 1^st finding out, learning about it, knowing about it

 

Just remember it doesn’t matter what stage you are at we all go through different stages and we all have to do each stage one step at a time.

 

My book is going to talk about everything we go through from the good days, to bad days, from the struggles, to the easy things, from the things we took advantage of before we got sick, to the things we can no longer do or struggle to do.  I want to let people know how this one illness opens the door to other illnesses and with your help I know my book will be successful.

 

I am going to try and publish this book and when people buy them 25% will go to my school Blackstone Academy, 25% will go to me and my college needs, and 50% will go to a foundation for lupus patients.  I am still trying to find one so if you know any foundations that are trying to help us then please let me know.

 

Thank you very much for your time and efforts,

Nicia Julia Ramos

6 months ago

Ati

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Hello Gladys!I am a high school student conducting an experiment to see if lupus patients who participate in online support groups or in person support groups report higher levels of well being. Your privacy will be kept and no names will be used in the collection and analysis of my data. I would really appreciate it if you would take a few moments out of your day to complete this survey. Please! Thank you for your time!

Here's the link to my survey:

http://www.zoomerang.com/Survey/?p=WEB22A7A8L9B5K

7 months ago

james

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 THANK YOU  FOR BEING ON HERE   TOOK ME  TWO  YEARS TO FIND SOMETHING 
   LIKE THIS LINE TO TRY AND RELATE  I ALSO HAVE  6 FEMALE COUSINS WHO HAVE IT    IM  A  BIRACIAL MAN HALF  MEXICAN AND HALF  CAUCASIN   MY OTHER COUSINS  THAT HAVE IT  ARE ALSO  MULTI RACIAL   MEX-BLACK  MEX -WHITE
 ALL MEX        MY AFFECTS MY LEGS EXTREMELY  I WISH I COULD FIND SOMEONE
 ELSE WITH THIS PROBLEM

8 months ago