That Sneaky Bastard has a Name: It’s Lupus.

That Sneaky Bastard has a Name: It’s Lupus.

by Kimberly W. Floria

silentlyheardonce

I posted The Sun aka Lupus Enemy #1 and a few people showed interest in lupus.  It’s not widely known but there are thousands of sufferers.  I have a blog http://meverselupus.blogspot.com/  On that blog I tell my life story in between dealing with my emotions of being newly diagnosed with lupus. I was considering starting a new lupus blog here, titled me verse lupus round 2. But I found keeping up with one blog is enough work. If anyone is interest in hearing more about lupus please let me know and I will post more information from time to time. In my first blog I was whining and crying I was scared thought I was going to die soon. But today I am living and have no intention of letting lupus KO  or TKO me. I’m old school I got 14 more rounds to go.

Ever been in a department store in the clothing section and there’s this bratty kid running around, bumping into everyone, climbing under the clothes racks, creating havoc with whatever he touches. His mom running after him trying to control him but it’s no use. She fights a losing battle and just snatches him up and leaves the store. That’s what lupus is in the body.

 Lupus is an autoimmune disease that attacks your natural antibodies. Somewhere along the way your immune system got confused and mistaken your healthy cells with weak cells. Therefore making you sick. These sneaky little autoimmune soldiers march around your body finding vulnerable unsuspecting organs and attack. These soldiers are hiding and lurking in unsuspected places, biding their time to wage a full-blown attack. Until then they perform unsuspecting maneuvers. They are so subtle not you or your doctor is aware of the war against your body. It may take years before Mr. Lupus is recognized.

 Let me arm you with some of the tactics he uses to weaken his prey. Have you ever been outside in the sun, just enjoying a game of softball, or at picnic? It’s normal to be tired after such activities. Right? Should you be so tired the next day after a good night sleep? It was so hot that you got a little prickly heat rash on your arms, neck and that sun burn across your nose. Hum, normal huh?

 Winter arrives and your knee hurts where you fell running to catch the bus a couple of years ago. It’s just the cold troubling that arthritis. Your hands are swollen and hurting. Maybe you did too much when you cleaned out your closet, lifting those old boxes and things. Let me ask you, did the doctor tell you, you have arthritis? Or did your grandmother tell you. You have arthritis because she had it when she was fourteen? Did you go see a Rheumatologist and get a blood test for arthritis? There are test to show if you have any form of arthritis in your body. There are test to tell if you have any inflammation in your body. Of course there are X-rays and MRI’s to see deterioration.

 You had a bad infection and got even sicker from the antibiotics the doctor prescribed because the drug contains sulfa. Now that you’ve taken all these drugs to get well, your hair suddenly begins to fall out. It must be all the medications you were taken. Years later your beautician finds a bald spot in your hair and tells you it’s’ a fungus and sells you this stuff from her country that will help the hair grow back. You think nothing about it.

Did your doctor do a complete blood culture and found your triglycerides were out of whack? Did he say your syphilis test came back positive, but when he did the viral test it was negative? Just so you know that’s a false positive result. Did the results say you were anemic?

Those are the little clever tricks lupus uses to invade your body and weaken your defenses. It may take years before any of these symptoms become obvious that there is something seriously wrong. I had all those tell-tale signs over the years.

 Lupus is so sneaky, conniving that he fools the doctors, so much so that they ignore your complaints and you begin to think it’s all in your head and you’re a hypochondriac.

 You have a baby and you find yourself so tired, but it’s normal you’re a new mother. Running around toddlers is a lot of work, especially if you’re going out to work every day. Forget it if you’re a single mom with no help. You can’t wait until the kids get bigger and can start taking care of themselves some. But you’re still tired. What is wrong with you? Some days you just don’t want to get out of bed, your body feels drained. You take vitamins and you hope you’ll feel better, but you don’t. The reason the vitamins don’t help is because lupus is hyperactive just like that kid in the department store. The more you chase that kid around the store, the more he laughs and the more energize he gets. The more you try to combat lupus with supplements the more you boost your immune system and make it easier for the lupus to attack you.

 Scientist has known about lupus for years but still they don’t have a clue where it comes from. It may be hormonal, it may be genetics, and it may be environmentally triggered. Have you noticed that your monthly periods are for either a day or hangs around too long. Did you start menstruating late say around 14, 15 even 16? Did you have a hard time getting pregnant? When you did get pregnant, did you suffer from miscarriages? Did have a lot of cramping, nausea feeling and the diagnosed with fibrous tumors? Did you have a hysterectomy? Did you start to feel better after the hysterectomy like doctor and everyone else who had one told you?

 Do you have headaches that don’t go away even after Tylenol? Do all the symptoms keep reoccurring but you just accept it because the doctors never find anything wrong and after while you feel better. Do you have a rash that won’t go away?

 There isn’t any blood test, urine analyst, x-ray or other type test that will diagnose lupus. There are eleven markers to determine if you have lupus. The above are the ones that I suffered since I was a young child. I was told I was allergic to chocolate and that explained the rash. I noticed that the rash usually developed after sun exposure. I’ve told doctors this but they always dismissed it, like I didn’t know what I was talking about. My mother had lupus and the sun was an issue for her. This and the joint pain were the only symptom I knew about.

 When I complained about my hands, the doctors would laugh that I was too young to have arthritis. I was a teenager when the pains started. I asked to be tested for lupus and they would run test that I knew nothing about and they would say they were negative. No lupus. I was never asked about any of the symptoms I was having. If I could go back in time I would keep a record of all the illness I had and the symptoms. I would record all the changes, the pains, the swelling. I would asset my tiredness, try to figure out if the activity I did was enough to make me so exhausted. I would have gone to the doctor for everything no matter how minor. But as it was, the doctors who never had any answers for me so I would just wait for whatever complaint I had to pass.

 If you have any of the above symptoms I mentioned get an appointment with a Rheumatologist, tell them you think you may have lupus and they will run the test and evaluate you based on your symptoms. I believe if I had been diagnosed earlier my lung may not have gotten involvement. So don’t be ignorant to this sneaky bastard of a disease seek help if you suspect he’s lurking around your body bidding his time to attack.

 The “Eleven Criteria”

 1. Malar rash: butterfly shaped rash across cheeks and nose.

2. Discoid (skin) rash: raised red patches.

3. Photosensitivity: skin rash as result of unusual reaction to sunlight.

4. Mouth or nose ulcers: usually painless.

5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.

6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleurisy)

7. Neurologic disorder: seizures and/or psychosis.

8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine.

9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count.

10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin

11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. A special note on the ANA test

Common complaints include the following:

 • Swollen, stiff, and painful joints

• Fever over 100 degrees F

• Fatigue

• Rashes on the skin and/or sensitivity to the sun

• Swelling around the ankles

• Chest pain with deep breaths

• Unusual hair loss

• Pale or purple fingers from cold or stress

• Mouth ulcers, often painless

For more information or to find out how to obtain help please contact the following links.

http://www.lupus.org/

http://www.lupusny.org/

http://www.mayoclinic.com/

29 thoughts on “That Sneaky Bastard has a Name: It’s Lupus.

  1. I wish you strength in tackling it all.

    Is there a known cause for lupus?

    (Me, I live with a wheat allergy. It took me four years to finally discover it. I changed my diet and am starting to feel better now.)

  2. It is amazing how much there is to learn about the human body and all that can go wrong with it. You described lupus in such a clear comprehensive way. It is a great service to those suffering and those trying to understand/help/live with those who are suffering.

    Me, I have Crohn’s Disease, which has many of the same symptoms as it is another autoimmune disease. But I’ve had it for about 40 years so that the newness is gone and I have been fairly lax in talking about it. Mostly I try to ignore it until I need to focus on it.

    Like grief from a personal loss, there are stages to dealing with a chronic illness!

    1. I know of Crohn’s Disease and I’m sorry you are suffering with that. You are right about the human body it puts us through so many changes. Thanks for you reading and encouraging words.

  3. Such an important post (and good on you for starting the other blog too!) I’ve met quite a few folks with lupus through my work with the Crazy Sexy team (Kris Carr)….it can be so devastating going undiagnosed for so long. I applaud you for being your own advocate…and for sharing things like this post to spread awareness. Good job, girl!

    1. Thanks a lot. I was going to start the other but decided to post lupus articles and such here. This way, hopefully, it will help make others aware as well. Thanks always for stopping by. 😀

  4. No you don’t. I joined all these on-line support groups and on FB and these people are sick. I mean scarey sick. I had to back up because as I read their stories I became more depressed and more scared.

  5. I have heard of Lupus before yet never really knew what it was. My sister has a good friend diagnosed with it and has never been able to have children because of it. Thank you for this information. As with any condition, education is so important. We need to look upon one another with kindness because we never know what someone is going through in life. So many illnesses cannot be seen. I am glad that I read this… I am more informed and have a better understanding. Thank you for sharing. ♥

    1. I’m glad you found it interesting. You’re sister friend probably has APS. I explain more about it in the future. Her blood probably clots, it’s common to women who have lupus. My blood does too. I take blood thinners. The doctors believe I had a bunch of blood clots in my lungs which was giving me breathing difficulty. But any way thanks for reading. 😀

      1. That had to be a terrifying experience… I am glad they got it figured out for you. I imagine, by the description, that it kind of changes course and you never know what is coming next??

  6. We had a family friend who died of lupus about five years ago. Until then I had never heard of the disease and it is rarely known here in Ghana, though I am sure some awareness has been created over the years. Our friend’s parents set up a fund/foundation in her honour but I’m sorry to say I never followed up on that. This is a very good and informative post. I will also help to disseminate the information somehow in my country. I am happy to know that you have found God’s strength to sustain you. He is the greatest Physician! Keep healhty and safe. God bless!

    1. Thanks for reading and I am pretty sure that there are many in Ghana that will benefit from this information. Off my head I can’t give you precise numbers but the largest number of people are black woman, next are Latino and Asian, white woman. Men are the least effected. I will share this information with facts in a coming post.

  7. Once again Kim; great post…
    You impress me so much with the ‘light-hearted’ way that you address this issue in regard to yourself; very philosophical… I do appreciate that it’s better to ‘play it down’ and ‘cheery-like’ rather let it ‘get you down’; though I’m sure that you have your ups and your downs…. However; you are very inspirational to those of us who do not suffer this malady; and I know that you would be inspirational to those who do….

    1. Thank you Carolyn, It is what it is and I can’t change it so I have to live with it ans accept it but I don’t have to accept its limitations. The doctors use to always say, you’re very sick and I use to feed into that even though I didn’t feel “very sick”. So I don’t think of myself very sick any more and it changed my whole out look.

  8. Thanks so much. I have never personally known anyone with Lupus. Other than being familiar with the name, I did not know anything about it. Your post is so informative and educational. I am terribly sorry that you have to go through this constantly. Day in and day out.

    Have you read the “spoon theory”? When I though I had MS, I was searching the internet wanting to find as much as I could and somehow I came across a blog that had posted the “Spoon Theory.” I loved it so much I posted on it. That described perfectly how I was feeling at that time…. and the author has Lupus.

    Well, thank you again for sharing.

    1. Michele I happy you found my post informative. I was very sick during the first 3 years. The lupus attacked my lungs and I didn’t have insurance and was misdiagnosed. In October 2010 I was able to get affordable healthcare for people with pre-exsisting conditions. I was able to get the test, heart cautharization which diagnoised me with pulmonary hypertension. I’ve been on the right medication for over a year. I no longer need O2 and the doctors are reducing some of my meds. So I’m doing very well. I know the spoontheroy I met Christina at one of the lupus events. We call ourselves spoonies. Often saying things like I have a lot of spoons today or I need some more spoons. It seems people are interested in lupus so I’m going post more information. I’m using kindle fire to type this, it’s just like using a cellphone 🙂 Thanks for reading and have s good night.

  9. Ty for sharing, a few months ago I for the scare I may have it! All I could think of GOD don’t let it be true! SCA is enough for me! You so right more then one blog is enough! As you know I try and make dis blog all of me! I have started sharing about hospital visits since a nurse gave me ideal to blog about my illness! As its not much awareness, blogging give us the chance to educate as many people abhor want to know and learn! God Bless U

    1. You are so right, it would be a lot to bare Lupus and SCA. Both are autoimmune and it’s not unheard of. You know God can be a comedian and giving us things we may think is too much to bare may be the test He wants us to pass. Or of a task He wants us to complete. I don’t know what He wants of me but my writing interest is always sparked. I wrote about my lupus and a lot of what I faced over the years in my first blog. I thought it was enough, then I come to WP and I’m apart of this community and I think He wants me to share me. Maybe that’s my way to help others through life. So I keep on. He will guide me and I will accept what ever He gives me to carry. I was on Oxygen last year, this year I don’t need it and I can walk further and further and the doctors are reducing my medications. God is able and He has blessed me.

      1. Amen! Nothing that he can do! Your truly BLESS! 🙂 Thank you for sharing, and I hope you continue to bring it over to wp and share it with many others who is going through it as well! God Bless

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