Lupus - Jacksonville, FL

L.-

My wife did not have Lupus but she did have Still's disease which has many similarities. I believe that Still's is much more severe than Lupus. We have a daughter that is 2 also- I would recommend that you budget the amount of tasks you do in a day and request as much help as possible from family, friends, neighbors and etc. I recommend you do a web search on something called the "Spoon Theory". It explains why I recommned to you that you budget the number of tasks that you do in a day. You can also share this theory with others who do not understand the difficulties that you will experience with every day life. Even the simpliest of tasks are not always simple. Add a 2 year old to that and you will need help. I wish you the best and don't be afraid to ask for help when you need it- that's the best advice I can give you.

Ron (M.'s husband)

I really don't know much about lupus, however I know a ton about husbands deploying and being left with little ones while suffering from a painful medical condition. I have endometriosis and my husband has been gone more than he has been home. I am going to assume you are a military family. If I am right let me know, I know some wonderful was to help you out. Also, are you near any family or have family that can help you out while he is gone (or really great friends you consider family)?

Hi L.,

My mother was misdiagnosed with Lupus years ago, and was treated with LOTS of medication. These autoimmune disorders mimic themselves and are very hard to pin down. Even with a positive diagnosis your first step is to build up your immune system. After reading a few of the other responses I have to tell you that some of these women are dead on! Start with your diet... eat LOTS and LOTS of fruits and veggies. Juice them if you can and start seeing a chiropractor immediately. I know in the beginning you might have low energy, but do some sort of physical activity and add more as you feel you are able to. Check out mercola.com website for some good information. I can tell you if you choose to only follow the medical route you will be in for a long hard journey. Do as much alternative medicine or conservative care as you can. You will be amazed with the results. Good luck to you and I know you will do great!

Hi L.,
A friend of mine has Lupus and I introduced her to natural lotions specially made for sensitive skin. She said it's the only thing that has helped her skin.
Give me a call or you can go to my website and find out about it: www.createwealth.myarbonne.com go to Shop Online and look at ABC Arbonne Baby Care.
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Good luck,
S.

First of all, start eating your greens. You need to eat items with more chlorophyl. I have a friend that can help you almost cure yourself.

Not sure what your diet is but you feel much better if you start juicing and eat less meat.

Her name is Dr. Elizabeth Kapadia and her # is ###-###-####. She can start you on your new path.

I'm sorry to hear that. I don't know much about it, so others will give you more detailed advice...

but - isn't it one of th autoimmune diseases? Go to WebMD.com. That's where I get a LOT of RELIABLE valuable advice about medical issues. When it comes to our health, old wives tales, new wives tales and superstitions are nowhere near as helpful as research based, knowledgeable advice. And - having to wait for appointments, or seeing a doctor with less than adequate communication skills or less than useful understanding of the type of life YOU need to lead - it is good to have another place to go for that kind of good advice.

And - if it IS one of the auto-immune diseases - it will be important to maintain perfect healthy habits, nutrition, exercise as you can tolerate it (something that does not make things worse), avoiding bad stuff (drugs, alcohol other than in extreme moderation), no fad dieting (only the food pyramid stuff that we learned in school will do - check out the American Diabetes Assn web site...their diet is the one we should all be eating, anyway...it is not as strict and severe as it was in the olden days, it is totally reasonable and can be adjusted to allow you to have most anything you love...

Learn healthy ways to alleviate stress in your life. (Not smoking, not Xanax - take a walk, listen to music, meditation and/or prayer, yoga, talk to a positive, supportive friend...there are hundreds of ways to do it - because you WILL have stress raising a 2 yr old! :-)

All the auto-immune diseases get worse when the body / spirit / mind is under stress. It will be helpful learn to forgive yourself for not getting it ALL done - and learn to ask for and accept help - etc, etc, etc...

Good luck. I hope folks have practical ideas for you in the meantime...my ideas probably are more for the long-term, prevention of flare-ups...

OR - and this is important - I may be wrong about it being an auto-immune disease and - well - we all ought to do this stuff, it's just even more important when stress levels raise, or illness strikes. Good luck to you - and don't forget WebMD!

My mom has had Lupus for a good while now. This year is has been the worst for it too. Check out this website. It just might help you with information.
http://www.lupus.org/newsite/index.html

Good luck.

Hi L.,

Although I don't know alot about Lupus, a mom in one of my online groups runs a Lupus website called "But you don't look sick". It has a ton of infomation that might help. http://www.butyoudontlooksick.com/

Take care,
T.

L., Call me, I have sooo much to tell you!!! I am a mom of 2, 39 yrs old, have Lupus (in remission) diagnosed when I was 21 and my husband was medically retired from the Army after 17 1/2 years!!!! I can talk to you about the Lupus and the deployment there is just toooo much to write here..........Just call me I'll be happy to talk to you about everything!!! ###-###-####
J.

Hi L., I am sorry to hear you have been diagnosed with Lupus. My mother has had it for 10 yrs. At first her doctor had her on alot of meds but she was not my mother at all. She would go to work come home sleep and go back to work for her afternoon run (she is a school bus driver) and come home and sleep again. I think the meds was making it worse. Well a few years ago went went and researched on natural vitamins and herbs for lupus. She has now been taking herbs and vitamins instead of the chemical drugs and my mother is my mom again. She doesnt sleep all the time or doesnt complain about hurting. So maybe do your research and do it the natural way. Best wishes on getting to feel better...

L.

Hi L.! I'm sorry to hear that you have lupus, but want to let you know that you can go on to live a normal life with lupus. I was diagnosed with lupus in 2003 and have done a lot of research on the disease. I've been able to modify my lifestyle to remain relatively healthy over the past five years. I am sure you may be overwhelmed with the diagnosis, but you will be able to survive with your husband in Japan! First of all, what are your symptoms when your lupus is active? Each person can have different symptoms. Is your lupus affecting your kidneys? Also, where do you live because I have a rheumatologist that may be able to see you sooner than in 2 months? Let me know any questions you may have because I have probably researched it. Just know that you can handle this! I work from home and have two children under 2 and I can handle my disease. It's all about accepting it and moving on! I don't let the disease rule my life. Hope I can help! J.

Hi L.,

I don't know much about Lupus, but I know all about the deployment part of life. I'm a Navy wife stationed in Kingsbay. I also have a 2 year old and 4 year old so I know all the stress they are. I've read that you have to keep your stress level down so If you ever need to take some time out I'd love to get to know you and your little girl that way I can watcher her sometimes so you can go out and relieve your stress or if you just want to talk to another military wife I'm here. Hope you start feeling better and God Bless!!!

Hi, L.. Wow, that's heavy, but at least you have a name for it and there are some things that can be done for you medically.

I don't have Lupus, but I have been diagnosed with Fibromyalgia. We have similar symptoms: pain, weakness, fatigue, feeling these things and others for no particular reason that anyone can see on a blood test or an X-ray.

Some things I do that are helpful to me in managing the fatigue and living through the pain: #1, I live according to the energy I actually know that I have. That is, in times when my energy feels high, I know that it won't stay that way very long, and I pace myself. I try not to plan to do too many things all at once, and especially, I try to space things out every day so that I am not on my feet for very long at a stretch, nor am I on my back too long, either, because that makes me stiff. For instance, the way I wash dishes is thus: I have a small to medium sized dish drainer, and I do just enough dishes at a time to fill it up, but not to overflowing. That's about 10-15 minutes worth of work, and then I stop to let them air dry. If I'm not exhausted, I will also wipe down the stove and counters, but then I force myself to sit down at that point for 5-10 minutes. If there's something I can do sitting down (I've learned to sweep, vaccuum and mop from a chair or couch), then I do that, but otherwise, I will congratulate myself on doing what I just did, and find nice things to think about. I might send a text message with a joke to a friend, or an inspirational thought or Bible verse. Yes, I also pray a lot, that God will give me the strength over the day to accomplish what has to be done.

It's really, really important to keep your spirits up. It's really, really important not to get down on yourself or blame yourself because it's hard to do certain things, and it's hard to keep up with people who do not have a chronic illness. That's the biggest challenge for me. For instance, I have a hideous amount of pain in my wrists and thumbs, and last Sunday in church, I was determined to clap my hands during the singing, but then I got this awful pain like a lightening bolt in my left hand. I wrapped my other hand around the pain in my left hand, and then I started to cry softly. The pain was bad enough to cause that, but on top of that, I was so frustrated and disheartened by the fact that I couldn't clap my hands to make a joyful noise! Then I remembered that God knew what was going on, God knew before I went there that morning that that would happen, and He has compassion on me...and besides, He doesn't REQUIRE hand clapping, it's just a nice thing to do while singing praises. So I lightened up on myself, and gave myself permission to have arthritis this bad, and I just let go of it.

The mental and emotional challenges are far greater than the physical ones.

If I were you, I would also get some help. Rally friends and family around you to help with chores at least a couple of times per week. Don't give yourself the ghost of a chance to feel isolated and alone! It's not healthy, and it will become another thing to overcome. Get friends, family and trusted teenagers into your circle to play with your daughter on a regular basis so that you can rest a little more and conserve your energy...plus, if she gets used to having people help out before you have a really bad spell, she will be less likely to freak out when you really, really need the help.

I am a huge believer in smooth, gradual transitions. Kids seem to adjust so much better when there is not a huge, sudden crisis in the house.

And give yourself the loving attention you would give to anyone else who has your condition. ( : Give yourself permission to work out your strategies for dealing with the symptoms the same way you would cut anyone else some slack. And don't let anyone, and I mean, ANYONE, make you feel badly for not having a perfect house during the times that you need to cut back on your activities. I can't tell you how many people love to criticize and just don't understand that a chronic illness means that you are physically unable to push yourself to the last ounce of strength the way a healthier person can. A little bit of dust or a little something that wasn't put away is not a crime! But some crazy, judgemental people will think that it is. Learn to tune them out or tell them off.

Anyway, I hope these suggestions are helpful. Anytime you just want to e-mail someone who has an idea of what you are going through, even though we have slightly different diagnoses, please feel free to write me.

Peace,
Syl

Hi L.!

You're going to get LOADS of advice and opinions. My sister has lived with lupus for over 20 years, and I for almost 19 now. Lupus mimics other diseases' symptoms. The first thing is to know what kind you have. If it's discoid, STAY COVERED! There are things you can do to stave off the sores. If its systemic then your body is constantly attacking itself. Stress will bring it on!
It's a difficult time, but it's a cake walk compared to what you went through before you were diagnosed.

The most important thing to remember is that YOU KNOW YOUR BODY BEST!!! Don't let ANYONE tell you how you SHOULD be feeling. It's different for everyone - make sure your doctor listens to you!

Good luck - you can email me anytime.

M.

In my opinion, illness has a direct link with stress and anxiety. Those can lower your own immune system. Lupus is an autoimmune disease. I am sure your plate is full ith a two year old and a husband leaving.
I would do everything I could to eat better, sleep better, and laugh more. I would also seriously do some research about changing your diet to more whole foods, more anti-oxidants and getting more sleep.
Find a warm, genuine group of caring women who you can share your heart with and share in helping you with your child so you can take some quality time to just "be".
I recommend the amazing 100% fruit beverage called Mona Vie. I gave it to my cousins daughter with Lupus and she has felt relief within a very short time. It's a very high anti-oxidant and has met with a wonderful response from over one million people drinking it. Take responsibility to care for this challenge.

Good morning, L.. I'm sorry to hear about your diagnosis. I have a very good friend of mine who has had Lupus for many years. She was on 17 different meds until her mom introduced her to Shaklee nutritional products. She manages her Lupus entirely through Shaklee products, she is off all meds, and leads a very active lifestyle. Her mom's name is Shirley, and her e-mail is ____@____.com you would like her phone number, please e-mail me and I'll send it to you privately.

Take care & God Bless.
E.

Hi L.,

I don't know how open you are to alternative therapies but they help trememdously. My good friends mother was diagnosed with lupus, rheumatoid arthritis, celiac and sjogren's. They are all in the same family because they are all autoimmune disorders. She didn't get any relief from medications but from elilmintating foods that she has allergies/sensitivities to, nutrition therapy and gentle chiropractic care. She hasn't had any problems in years since she's been doing this. I know another woman with Lupus that chiropractic helped too.

Bless your husband for serving our country and bless you for having the strength for it!

Let me know if you have any questions!
C.

Hi L.,
I know you feel overwhelmed right now, but this situation will make you see you have strengths you never thought possible. I do not have Lupus, but I have Multiple Sclerosis which is also and autoimmune disease. And, I have two very active little boys (19 months and 3 years) and a husband who owns his own business and is gone about 80 hours a week. I know my situation is not the same as yours, but wanted to let you know there are other moms out there dealing with and thriving in similar situations. Take each day one step at a time, do as much as you can and know that is enough, and enjoy your daughter and mommyhood - that is what makes it all worthwhile.

Hi L.,

I don't have Lupus, but am a nurse and did some research on the disease for an old neighbor that did have it. One of the most important things is to try to keep your stress level down (which it doesn't sound like is going to be easy with all you have going on). Try to find an activity that you can use as an outlet, treat yourself to regular massages, etc. Don't think of it as a slurge...its actually good for the lupus. Eat a healthy diet and keep a good attitude. My mother has MS, which is another auto immune disease...she had a horrible attitude (kept harping on how she is disabled, etc) Well, her body began to believe all she was saying and she became completely dependant on everyone around her. Stay positive and good luck! God Bless. T.