lupus and our take on it

January 23, 2013 at 4:18 am (Uncategorized) (, , , , , , )

after giving this some thought i have to say lupus for me is not even worth thinking about.  most of the symptoms are the same as i am already experiencing.  it did raise some questions for me and after reading a bit of research thought it might help someone else.

maybe we have just been through so much that this seems like a non-issue.  today i had the scans for my carotid arteries, i was able to take a look at it and it seems good.  that sounds like good news and in some ways it is.  i have never had a problem with high cholesterol or any type of blockage in my arteries. this is not what caused my heart condition. actually if i had blockages it would be better.  i could have surgery to correct that problem.  having clear carotids  will not stop a stroke.  so there is just not going to be a surgical intervention.  ah well, it is what it is.

this week i have a dear friend visiting so i want to spend time with her, we also have some friends coming down from indiana for friday and saturday.  think we may be going to heather’s on sunday to meet her new kitty and have a great brunch (if i can make it up the stairs).  guess it will be next week before i go to some local facilities to check them out.  also going to talk to a social worker at the hospital to see what the usual procedure would be for post-stroke.

my love wants to have me at home regardless. it may take some work to help him understand i am not saying a facility is my first choice.  it does need to be on the table though.  there is a chance i could go to a rehab bed for 30 days unless we can get outpatient physical therapy.  then he would have time to get help.  we have talked about hiring someone and give them room and board in addition to a salary.  the best thing is take him with me and let him help get answers to his questions.  i will do my best to make sure he makes it through whatever comes our way with the least amount of grief.

below i am sharing some of the info i gathered. i hope it helps someone.

Definition

Lupus is an autoimmune disease.  It causes the immune system to make antibodies that    attack the body’s healthy cells and tissue.

Symptoms

Symptoms can be mild or very severe. For some people, only part of the body (eg, skin) is affected. For others, many parts are affected. Though symptoms can be chronic, they can flare up and get better on and off.

Common symptoms:

Swollen and/or painful joints

Fever

Skin rashes over areas exposed to sunlight (especially on the nose and cheeks)

Extreme fatigue

Other symptoms may include:

Hair loss

Chest pain, coughing up blood, shortness of breath, difficulty breathing

Kidney inflammation

High blood pressure

Anemia or other blood disorders

Sensitivity to sunlight

Raynaud’s phenomenon

Ulcers in nose or mouth

Swollen glands

Headaches

Dizziness

Seizures

Stroke

Inflamed heart, heart vessels, or membrane surrounding the heart

Blood clots

 

Treatment depends on symptoms

Medication

Medicines for mild symptoms:

Aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs)—to relieve joint pain

Acetaminophen (eg, Tylenol)—to relieve joint pain

Hydroxychloroquine or chloroquine—to relieve joint pain, fatigue, balding, and skin rashes

Topical corticosteroids—to treat skin rashes

Dehydroepiandrosterone (DHEA)—a hormone medicine that has minimal benefit

Medicines for severe symptoms include:

Oral and intravenous corticosteroids to control and limit inflammation in kidney, brain, lung, and heart, as well as in cases of severe anemia

Immunosuppressive drugs to suppress the body’s autoimmune system

Mycophenolate, azathioprine, and cyclophosphamide for kidney disease or other life- or organ-threatening conditions

Rituximab for refractory disease

RESOURCES:

Lupus Foundation of America, Inc.

http://www.lupus.org/

 

 

 

 

 

 

8 Comments

  1. jmgoyder said,

    It’s not fair.

    • sbcallahan said,

      but what if it is fair? ahh now that is a different perspective:)

  2. tersiaburger said,

    Oh my friend – I don’t have words. Enjoy your visit with your friend. Hugs and warm wishes

    • sbcallahan said,

      the great thing is so many of the symptoms are the same as the congestive heart failure so not a lot of new going on. it does put a name to the horrible rash and itching along with a few milder components. i am amazed at your generosity! that you could take time now and think of others….

  3. appletonavenue said,

    Great information to have.

    • sbcallahan said,

      it is one of those things that can easily be diagnosed as something completely wrong.

  4. WordsFallFromMyEyes said,

    Your physical body seems extremely enduring, let alone your spirit. You have a great constitution. And I saw your comment ‘what if it is fair?’ Not many people in your situation would even think in that direction.

    You really are awesome. And as for the information – certainly news to me. I wish you the best.

    • sbcallahan said,

      i’m glad the infomation was useful. my body does seem enduring, i like that word by the way, my spirit i have always been sure of and appreciate your validation.

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