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  • tgal's Avatar
    04-06-2014, 01:20 PM
    First let me say welcome to the WHL family! We are glad you found us! Next I have to say that those last two post are exactly the kind that brought...
    3 replies | 80 view(s)
  • tgal's Avatar
    04-05-2014, 01:20 PM
    Hello and welcome to WHL! We are so very glad that you found us. I am so sorry you are having a hard time but sadly it often takes us a long time to...
    2 replies | 45 view(s)
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35 Visitor Messages

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    There is an entire thread on here about meds lol I'm on more than I would like but I need them because I got really sick a few months ago. I finally went to a rheumy when my fingers and toes started turning purple. They did blood tests and everything was very abnormal and they told me they thought I had lupus. I was always achy and tired and had stomach aches and head aches all the time. But everyone just thought I was a complainer. I suddenly had a cause for everything and had never once thought all those little things were connected! They put me on plaquenil and then that summer I had other problems like swelling and joint problems. I think my symptoms were just progressing, and I bet anything that being on that medicine probably helped me a lot of getting even worse.
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    No one wants to take meds especially me but they are needed to keep you healthy with autoimmune problems, no matter what yours might be. The doctor you need to try to see is called a rheumatologist they specialize in autoimmune diseases. Did you have any blood tests with the doctor you have now?
  3. View Conversation
    i thought i would say, hi.
    this site is for anyone who is looking......
    being diagnosed is not a prerequisite to be here.
    so welcome.
  4. View Conversation
    From personal experience I had what I thought was almost no problems at first because I didnt see all the varied problems as being symptoms of anything. But I had more problems I think than I initially realized. Many drugs used to treat lupus and many other autoimmune diseases are not harsh as you said. For lupus, and I think other autoimmune diseases as well, there is a drug called plaquenil and it is our first drug. If the disease isn't very active it may be the only drug needed. I was given it as a preventative drug to make sure this disease didnt begin to attack my organs. That is one purpose of medications; to prevent the disease from getting worse. I wouldnt wait until you get really sick to try to get on some medicine because then you are more likely to need harsh drugs to treat your disease.
  5. View Conversation
    Hey welcome =) I just read your bio and wanted to say that there is definitely ALOT of benefits of seeing a specialist, as this is what they SPECIALIZE in lol they will be able to get you to a diagnosis and get you the medicine you need. Even though you dont have insurance I would try to get in to see someone and worry about the cost later. Autoimmune diseases can be easily treated for the most part, especially lupus, but they can be deadly if your not getting the treatment you need. I dont want to freak you out saying that its just my opinion. And again welcome! =)
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About Elo

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About Elo
Biography:
Hi there, I’m Elo! (No relation to the band E.L.O.) My full name is actually longer, but I go by Elo (rhymes with mellow and Jello), because it's much easier to pronounce and spell. Plus I like it.

I'm a dork. I love goofy humor, drawing, reading, baking (Caution: Does NOT mean I am good at it by any means), this forum, music, singing, and dorky MMO's (Though I’m not on any currently).

I value quiet, I think when you're really comfortable with a person, there are times when there's no need to speak.

I’m much more outgoing online than in person.

I babble when I'm nervous, the smallest things mean the most to me, and i'm quite possibly obsessed with cupcakes.

I got sick in November, 2010, and saw about 4 doctors and had multiple tests taken before being blandly diagnosed with an autoimmune disease / low level connective tissue disorder. Still awaiting a more specific diagnosis, of possible Lupus, MCTD, Sarcoidosis, Fibromyalgia, or a concoction of the few.

Due to minimal funds, and being caught with my pants down without insurance, I still haven’t been properly diagnosed. I’m hoping to remedy that soon – though it may take a while to even get to a specialist. One step at a time though, eh?

In the mean time, I’m just hanging out, bugging the forum goers, and taking it day by day. I’m unemployed – too sick to work, and living with my completely healthy (Thank Gad!) boyfriend, who is currently attending College.

That’s about all there is to it! You can follow me on twitter (yes, I caved and joined because of the Spoonie community) @ai_elo

Thassabout it!
Oh! My Avatar (since so many have asked about it) is an angel, with one black wing, and one white.
Location:
Indiana, USA
Interests:
Baking, Reading, Music, Walking, Animals, Anime, Drawing
Occupation:
Entertaining myself - and sometimes those around me.

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One day at a time, one breath at a time... We can get through this.

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Sometimes I think my Librarians know me better than my friends. and walking with cane

by Elo on 08-11-2011 at 05:14 PM
Sometimes I wonder if I'll ever get over being embarrassed while walking with a cane. I know I need to get over myself, but it's just, so... almost mortifying, really. Being seen at such a vulnerable point, when i'm in enough pain and sick enough that i have to use one. I just got back from the library and small grocery, and im still slightly nervous, even though i'm home safe now, away from the public's watchful eye. Today at the library, a man sitting in a chair next to the section i was looking

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