Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Hello All!

  1. #1
    Join Date
    Jan 2009
    Location
    NW Indiana, USA
    Posts
    117
    Thanks
    7
    Thanked 2 Times in 2 Posts

    Default Hello All!

    I am a 43 year old male. Over the last 2 years I have been diagnosed with Lupus, sleep apnea, FM, and myositis. I am currently on MTX 1cc / week, Plaquenil 20mg 3x / day, Folic acid 5mg / day, Androgel 5mg / day, Solumedrol 16mg on and 32mg off / day, and Lortab PRN 4x / day. I also use a CPAP for the apnea.

    I am a maintenance manager in a steel mill and got FMLA back in July of 08. I am still not sure how my employer is going to treat me overall cause I just recieved a bad evaluation that was based on when I was off sick while adjusting to my MTX going from oral to IM. My family tries to understand as much as anyone possibly can. It is still hard for them as they do not have to live with this.

    I came here cause I want to find people that are unfortunate to be going thru similar problems so I do not feel like I am going crazy. I am not at all sure what to expect with these illnesses as my Rheumy told me that she is in aw that I am still working. I do so cause I need to to keep my family going financially. I also want to be able to contribute any knowledge that I might have for anyone.

    Thanks for reading and here is hoping for a pain free day!!

  2. #2
    Join Date
    Jun 2008
    Posts
    915
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Cptblah,
    Welcome to the site. There are a lot of good folks that come in here. Rob our moderator has SLE and he has a lot of good information from the male perspective. I have had Lupus and several other Auto-immunes for most of my life and I just turned 50 in December. Rob will see your post and I am sure that he will respond pretty quickly. I hope that you keep posting. There are several men with Lupus that come in here.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #3
    Join Date
    Feb 2008
    Location
    Nova Scotia, Canada
    Posts
    1,692
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Welcome to the site cptnblah

    Glad you found us

    How long have you been on the plaquenil? It can take up to 6 months to kick in.

    I was about to give up on it, when it finally started to work for me. It's made a huge difference. Hopefully it will for you as well.

    Lupus affects every one differently. But there are alot of common issues.

    I'm not diagnosed as yet. I've had mixed ANA test results, and possitive malar rash as well as butterfly rash and a few other goodies.

    My sister has been diagnosed with lupus but is currently in remission...Yah!

    My mother also had lupus.
    Oh look ... a cookie

  4. #4
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 79 Times in 69 Posts

    Default

    hi cptnblah

    welcome to the forum. As you will find, there is an incredible amount of knowledge and compassion within this group.

    sorry to hear about your bad luck, I hope you can overcome any misunderstandings/non-personal rules that have occurred within your professional environment. A letter from your dr. might help resolve thes issues, but at the same time, it might result in a position change. this is a sticky area, and is governed by so many variables. I just hope that you can find a resolution, because stress is a huge bad guy when it comes to lupus and associated diseases.

    stay true to yourself, don't let anyone make you question your sanity.

    as far as family goes, I agree, it appears very difficult for them to understand the full capacity of this disease....after all, we look fine, so why do we do feel fine. My daughters spent some time reading posts on this site, and going with me to drs. appointments. these two things seemed to help them see some of what i go through, but thank goodness, they do not know the full aspect. You have to have this disease to really understand it, and i would not wish that on anyone.

    take care, welcome, and use us as a sounding board. we all care about each other.

    share a smile today,

  5. #5
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default hi

    Im just here to say welcome and so glad you found us. Im sure someone will be along soon to help you with the knowledge,help and support you need.Sending you hugs.

    Love
    Angel.xxx

  6. #6
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,721
    Blog Entries
    9
    Thanks
    1,578
    Thanked 919 Times in 582 Posts

    Default

    Hi Cptnblah :lol:
    Welcome to our family. I am glad that you are here and you will, most certainly, find people here who understand what you are going through and who can provide you with information and camaraderie.
    Like many of us, you suffer with several co-existing illnesses and trying to manage our health and our lives with all of these diseases can be extremely difficult.
    I know that the ADA has great information about job accommodation. Perhaps you can contact them to see what type of help you can get so that you will be able to retain your job.
    In the meantime, we are here to help you in any way that we can and we want you to know that you are not alone!

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

  7. #7
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    2,998
    Thanks
    256
    Thanked 146 Times in 77 Posts

    Default

    Hi...CaptainBlah...

    Thank you for reading us and sharing a part of you too...warm welcoming hugs.

    That is wonderful such love and importance to find a way to continue to work. To provide for those you love, your family. Hugs. Please ensure you too, take care of yourself...rest to replenish, manage stress as I am sure your job is demanding...

    Unfortunately, we don't know what will happen to any of us. We all have Lupus, but our symptoms may all be different but I know we understand one another what this disease does to the heart, spirit, to our livelihood from the pain, uncertainties..the changes in our lives it may bring.

    It does change us. In small degrees or large. We sometimes, more often than not change unwillingly...but change can lead us to places we would have never thought to journey. Physically and spiritually.

    Think of yourself as a machine.... preventive maintenance. Key is to care for ourselves to prevent other symptoms from occurring, breakdown. Through, eats, rest, drugs, exercise. Try not to isolate, be social in some form...interact. And enrich the mind and spirit.

    Remission is obtainable. Living a full life is possible, some with little or no restrictions.

    Crazy? We have all been there and back a few times, eh? You're not...Sometimes we get lost in our heads, thinking, worrying, fearing...when you find you are on that ride, post, write, talk about it. It helps.

    Be well...
    Love,
    Oluwa

  8. #8
    Join Date
    Jan 2009
    Location
    NW Indiana, USA
    Posts
    117
    Thanks
    7
    Thanked 2 Times in 2 Posts

    Default Thanks

    Thanks to everyone (KathyW1958, sits_inthe_corner, mountaindreamer, Angel oliver, Saysusie, and Oluwa) for all your kind words and warm welcome.

    In answer to a question that I saw...I have been on Plaquenil for about a year to a year and a half. Don't get me wrong...I do feel much better than I did when I was 1st d/x. Back then I could hardly get out of bed.

    I know that everyone here has their own issues to deal with also. It also helps me while I help others so I will be here to help also.
    Money cannot buy you happiness but it can buy you a big enough boat to allow you to pull up along side it!!! - David Lee Roth

  9. #9
    Join Date
    Dec 2008
    Location
    Chelmsford, Essex, England
    Posts
    1,044
    Blog Entries
    1
    Thanks
    15
    Thanked 14 Times in 9 Posts

    Default

    not just for another knotch on the bed post lol

    welcome to the forum, i thinnk you will like it here

    xx
    **The next or $ raised WILL be the cure for LUPUS**



    ☺☻If YoU gOt OcD aNd YoU kNoW iT....wAsH yA hAnDs☺☻

    ..♪♫**.❤.**☆.。.*✿♪♫**.❤.**☆.。 .*✿

  10. #10
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Hello Captain,

    I'm Rob, I'm 40 and was diagnosed with SLE five years ago. The fact that you are still working is really amazing. I've been on full SSI disability since not long after my diagnosis. I was a smallarms designer, and owned my own business. My cognitive problems made me a safety hazard both in the machine shop as well as at the test fire range, so my early retirement was not a choice. A handful of my employees pooled their resources and purchased the business and are carrying on nicely, but I miss it very much.

    Anyway, there aren't many of us out there, so it's always good to talk to other men with Lupus. You may feel like you are going crazy, but you are not. This disease can be hard on a person. It can also be controlled, and many people live a full and fulfilling life with it. Some lucky ones even go into remission. There are a bunch of reasons to have hope. I'm glad you decided to speak up and join our group.

    Rob

Posting Permissions

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