Results 1 to 8 of 8

Thread: New...1st Post

  1. #1
    Join Date
    Feb 2012
    Location
    Missouri
    Posts
    4
    Thanks
    6
    Thanked 0 Times in 0 Posts

    Default New...1st Post

    Hi Everyone,

    I found this site about a month ago, and was impressed with the vast knowledge of members and the info that is available. When I read through some of the posts it was like...finally, someone who understands and has walked a similar path.

    About me, I was diagnosed with SLE in 2009, though I now know lupus has been with me many years. After 2 knee surgeries, shoulder surgery, and gall bladder surgery( all of that during 2yrs.) All my symptoms intensified and the doctors were finally able to connect the dots and come up with the SLE diagnosis. Since the diagnosis, I have been on Plaquenil, and every once in a while Prednisone. I have trouble keeping my vit. d levels in the normal range, and so I'm back to taking the 50,000 units a week. I also have had AVN of femur(knee end), and still have a lot of bone pain to go with all the joint pain.

    I'm thankful for my supportive family...married 28 yrs. and have 3 wonderful sons(ages: 27, 23, & 20). I have found with this illness you need all the support you can get. So, I'm looking forward to become part of this community.

    Take care,
    Karla

  2. #2
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,940
    Blog Entries
    1
    Thanks
    1,403
    Thanked 1,631 Times in 1,118 Posts

    Default

    hikc, and welcome.
    it is good to know that some of the people who read our posts become members.
    thank ypou for deciding to become part of the family.

  3. The Following 2 Users Say Thank You to steve.b For This Useful Post:

    kcduner (03-06-2012), Saysusie (03-06-2012)

  4. #3
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Hi and welcome to the WHL family! Your story sounds like so many of ours. Years of "stuff" before some finally figures it out.

    Thanks for joining and I look forward to getting to know you!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  5. The Following 2 Users Say Thank You to tgal For This Useful Post:

    kcduner (03-06-2012), Saysusie (03-06-2012)

  6. #4
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,738
    Blog Entries
    9
    Thanks
    1,604
    Thanked 924 Times in 587 Posts

    Default

    I am so happy that you decided to join us. Welcome to our family. You are right, this place is filled with some of the most knowledgeable, caring, supportive, and understanding people on the web. We are a global family, but our care for one another makes us a very close family and I am so glad that you decided to become a part of that family.
    Many of us, like you, suffered from symptoms for many years before we finally received a diagnosis. Getting a diagnosis is always like a doubled edged blade - we are glad to finally have a name for what has been plaguing us, but saddened to know that we have a life-long illness. However, we are here to help you to find a way to discover your "new normal" and to support you as you do. Again...welcome to our family!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  7. The Following User Says Thank You to Saysusie For This Useful Post:

    kcduner (03-06-2012)

  8. #5
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    Hi Karla,
    Welcome to WHL. You sound very much like me. I have an overlap of several AI diseases.
    I also have dealt with AVN of my right knee and had surgery for that. I was told that after having the AVN dx, I could never take steroids.
    I'm only on Plaquenil, plus Restasis and pilocarpine for the dry eyes and mouth caused by Sjogren's.
    Like you, I also have the bouncing vitamin D levels. It seems to be common for many of us.
    We're glad you've joined us, and I hope to see you on future threads.
    Hugs,
    Marla
    (a former resident of Mo.)

  9. #6
    Join Date
    Feb 2012
    Location
    Missouri
    Posts
    4
    Thanks
    6
    Thanked 0 Times in 0 Posts

    Default

    Quote Originally Posted by magistramarla View Post
    Hi Karla,
    Welcome to WHL. You sound very much like me. I have an overlap of several AI diseases.
    I also have dealt with AVN of my right knee and had surgery for that. I was told that after having the AVN dx, I could never take steroids.
    I'm only on Plaquenil, plus Restasis and pilocarpine for the dry eyes and mouth caused by Sjogren's.
    Like you, I also have the bouncing vitamin D levels. It seems to be common for many of us.
    We're glad you've joined us, and I hope to see you on future threads.
    Hugs,
    Marla
    (a former resident of Mo.)

    Thanks everyone for the welcome!

    Marla everytime I see your name I think of a grade school friend who had the same name. My 2nd grade teacher used to call us "The Rhyming Twins" ! She was always switching our names. Haha, a former Mo. resident, didn't happen to have Mrs. Neely for 2nd grade?

    My AVN dx came 3 years before the lupus dx. Orthopedic dr. originally thought it was spontaneous AVN from a previous work comp injury...rollerskating. Now they are not too sure so two yrs. ago my rheumy stopped steroid treatments, but I always have to remind my GP. I'm allergic to aspirin and unable to take anti-inflammatory drugs so when I had bad flares(involving swollen joints & skin issues) my GP would prescribe short burst of steroids...usually 5mg 3x a day for 5-7 days. It is sometimes difficult to get two dr offices on the same page...now that my rheumy's office has urgent care I don't have to use my GP as much.
    I also have trouble with dry eyes and mouth but so far able to use OTC meds. If you don't mind me asking-what kind of surgery did you have for your AVN? Mine was also the RT. knee and I also had a small ACL tear & lateral meniscus tear. They did the drilling chondroplasty to stimulate bone stem cells.

    Again, thanks for the warm welcome.
    Take care,
    Karla

  10. #7
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    Hi Karla,
    I actually grew up across the river in Hartford, Illinois. I went to college in Mo - St. Louis University. I met my hubby there, and we both taught and lived in Florissant, Mo. until he joined the Air Force. The AF sent him to Mizzou in Columbia, Mo. for his engineering degree. We left Mo. in 1983, and we've traveled all over since then. I'm guessing that I'm probably a bit older than you.

    My knee surgery was just an arthroscopy in 2008. The surgeon trimmed the torn meniscus and shaved the dead part of the bone. He claimed that I should have been pain-free at the six week check-up, but it took me much longer than that. I think that the joint didn't feel quite right for 6 or 8 months.
    I've been on Plaquenil for three years now, and my joints feel fine. My problem now is that my calf and thigh muscles are in a constant spasm, so I have a really difficult time walking. I have Spasmodic Dysphonia - the vocal cords spasm uncontrollably. The otolaryngologist who treats me for that thinks that I have dystonia in my legs, too. He calls it Spastic Paraplegia. Aren't AI diseases fun?
    Hugs,
    Marla

  11. The Following User Says Thank You to magistramarla For This Useful Post:

    kcduner (03-10-2012)

  12. #8
    Join Date
    Feb 2012
    Location
    Missouri
    Posts
    4
    Thanks
    6
    Thanked 0 Times in 0 Posts

    Default

    Quote Originally Posted by magistramarla View Post
    Hi Karla,
    I actually grew up across the river in Hartford, Illinois. I went to college in Mo - St. Louis University. I met my hubby there, and we both taught and lived in Florissant, Mo. until he joined the Air Force. The AF sent him to Mizzou in Columbia, Mo. for his engineering degree. We left Mo. in 1983, and we've traveled all over since then. I'm guessing that I'm probably a bit older than you.

    My knee surgery was just an arthroscopy in 2008. The surgeon trimmed the torn meniscus and shaved the dead part of the bone. He claimed that I should have been pain-free at the six week check-up, but it took me much longer than that. I think that the joint didn't feel quite right for 6 or 8 months.
    I've been on Plaquenil for three years now, and my joints feel fine. My problem now is that my calf and thigh muscles are in a constant spasm, so I have a really difficult time walking. I have Spasmodic Dysphonia - the vocal cords spasm uncontrollably. The otolaryngologist who treats me for that thinks that I have dystonia in my legs, too. He calls it Spastic Paraplegia. Aren't AI diseases fun?
    Hugs,
    Marla

    Hi Marla,
    Well you might be a few yrs older, but probably not as much as you think! I too, went to Mizzou(80-81) and then transferred to Northeast Mo. State University-which now is Truman University. I saw in another post that you used to teach Latin- Quid? Lol, that was always my response in my 2 yrs of High School Latin class. I think I still can count and say I love you, but that is all I remember.

    My two knee surgeries were arthroscopic also, and I took much longer to heal. Especially my last one where I had no weight bearing for 8 weeks. After both surgeries I had to have ultrasound on my calf and thigh because they were in a constant cramp. They just knew I had blood clots but nothing ever showed up. I still have trouble with them cramping every once in a while but I always attribute it to over doing it. It is very painful, and so sorry you have to endure it daily.

    Take care,
    Karla

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •