08-22-2008, 06:03 PM
I was diagnosed at 35 when I was 6 months pregnant with my 5th. I was have only been to the rheumy once. I go again next week. I remember him telling me I have lupus and that bloodwork does not lie as I asked him through my tears if it could be anything else. He told me I have the antiphosopholid antibiodies, and that the lupus I have is the type that will go to my brain and kidneys but not my heart. I also have the anti-ro antibiodies. SO, I went for Non-stress test 2X a week the last 3 months and had ultrasounds every 3 weeks. They found nothing but when she was born she did have a heart condition that was mild and she outgrew it as of 2 weeks ago. She will be 8 weeks next week. I have an undergraduate degree in psychology and I have worked closely with a transpersonal psychologist doing all sorts of alternative thereapies. This was all over 10 years ago and unfortunately when I "grew up" and got married and started to become a mommy I lost contact with most of my connections. I was wondering if anyone has had luck with doing:energy work, cranial sacral work, deep muscle massage, and others that I cannot remember what they are as I am in a fog from the obvious and lack of sleep. I am trying not to take the plaquenial and prednisone. I am still nursing but am not producing enough but I know any is better than none. I stopped taking the baby aspirin a week before I was induced and cannot take it when I am nursing. I am considering getting a tanning bed and vamping the lights out to the thearputic ones. I don't do milk. I do all of my meats organic and do the fruits and veggies the same. I buy organic 80% of the time for me and my family. I use all non-toxic body products and cleaning products too. I stay away from parabens. I even buy organic clothing when I can find it. I am in a flare, which I expected post pardum. I don't know if these methods work or if I am just blowing smoke at myself trying to fix it without meds. that are toxic. I have 4 children to raise, all under 7. I need to be 100%. Do a lot of you go for personal therapy to deal with all of the stress of the unknown? I refuse to let lupus be my identity and am still in the mindset that if I do something or see a different doc then they will say I don't have this. But, I am having such severe hand/wrist pain lately that I cannot even type on the laptop and have dropped most of my coveted coffee mugs. My nose ulcers are worse than when I was pregnant. I also have such brain fog that I want to reach into my mind and yell at myself "where did you go?". I really appreciate any advice and guidance. I am so disguisted that there is no local support group and I live in immediately NE of the capitol of my state. Has anyone else lost their ability to spell too? I actually used to win the spelling bees!
Thank you very much.
08-23-2008, 01:10 AM
This is a great site. There is a lot of support and information here. Saysusie Oluwa and several others have gobs of information. I'm not fully diagnosed yet.
My mother had lupus and my sister is diagnosed. I've had a positive ANA test and a few iffy ones, plus rashes fatigue and a few other goodies.
I cannot answer your question about the natural path method of dealing with lupus, as I haven't tried it. But as I said, others will be along who can share some information with you.
However you need to address key issues that aggravate Lupus. You are a busy mommy and that's wonderful (you MUST get proper rest) make sure you have a support system in place for when you are not feeling up to pare. Friend, family or heck pay someone. Being tired makes you run down...being run down invites a flare.
Next diet: There is no magic food that will make us all better. Some people have bad reactions to certain foods that can cause or irritate lupus symptoms. You need to figure out what your food no no's are and replace them with something else. Above all else eat a well balanced diet.
Stress: You can't prevent or avoid stress but you can learn to deal with it in a healthy fashion. I've learned to identify very quickly if something is important to me or not. If not I let it go....completely. Stress is one of my worst enemies. I'll flare right after I've dealt with a stressful event. So I try to minimize it as best as possible. I am learning Tai Chi, which I love. It really does relax my mind.
Exercise: Move your body. The worst thing I ever did was baby myself. I got worse not better. I'm not saying to toughen up and keep going...I'm saying that you need to move your joints and keep your small and large muscles happy, so they can support you when your feeling at your worst.
Boost your immune system and protect yourself. For me, that means getting my flue shot, eating healthy and taking my vitamins.
You're a busy mom so you know the value in being organized. You need to make things as easy for yourself as you can. When you are in a flare the less you have to fuss with stuff the better.
When I fist got slapped down, I was very frustrated and upset. I cried and cried when I had to the simplest task. So I looked at everything I do and thought about ways to make it quicker to do and easier to do.
I also short listed items that could just wait. Heehee I love that list.
Sorry for going on like this. Medication and treatments are always in the forefront of our minds. You are starting on a journey of discovering how YOU are going to cope with the new rules in your life.
Treatments and medications take some time to figure out. I turned my nose up at plaquinel. I was scared to death of it. But the pain drove me to it. I'm not saying it's the way to go. It's working for me, but I have no guaranty that it will keep working. Even if you do decide to use medications...they can take up to six months to build up in your system before you feel any benefit.
I did a little dance of joy cause I thought plaquinel wasn't working for me and I could tell my doctor to take me off it. HA!
Three days before my doctor's appointment I was out in the garden ... it was a lovely day and I was digging and pulling and planting...then I stopped and thought "Well *poop" the stupid stuff is working. Just a few days earlier I couldn't lift my foot high enough to step in to the bathtub and here I was gardening away.
I hate taking medications and the thought of taking them for the rest of my life is very depressing. The bottom line is...I can’t move with out them. My body turns to stone. My bones and joints seize up.
I'm gonna hush now...
I'm sure others will be along to welcome you and answer your questions. We also have alot of mom's that come here as well.
08-24-2008, 09:27 AM
First, let me say that Lupus IS NOT a disease that can be dealt with homeopathically or holistically! There IS NO cure for Lupus and avoiding medications will, more than likely, cause symptoms to worsen. You will find pages and pages of web sites where people are claiming to have cured their Lupus by diet, holistic therapies, or some wonder drug or drink. Do not believe them! What you will not find, in all of these pages, are results from scientific studies, accredited research studies, or research institute studies that verify these claims.
If you talk to your doctor about holistic therapies, you will find that no doctor will condone it. Lupus is an auto-immune/connective tissue disorder. It can affect the entire body (tissue, skins, muscles, organs) and that is why it is a systemic disease. The body turns upon itself; something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and other germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”). In lupus, your immune system creates autoantibodies, which attack and destroy healthy tissue. These autoantibodies cause inflammation of joints, organs (heart, lung, brain), pain, and damage in almost every part of the body.
Lupus is a "chronic" disease which means it is a LIFELONG disease! Again...there is no cure, but there is management in order to lessen the damage and/or halt further damage. Lupus autoantibodies are always at work causing damage. They don't take a break unless medication is provided to slow their attack and hopefully stop it so that we might achieve remission. Without proper medication, the attack will continue and continue until it has wreaked havoc on every part of the body.
It is unfortunate, however, that every medication has a side effect. But, for many of us, the side effects are worth it, especially when we start to get relief from symptoms (like being able to garden again, as SITC stated). We, all of us, have come to terms with taking medication for the rest of our lives in order to manage this disease that we will have for the rest of our lives.
There are some who, with the help of medication, proper diet, exercise, and appropriate lifestyle changes, have managed to achieve remission. There is no formula for who will achieve remission and who will not. Nor is there a formula for when one will achieve remission or if one will ever achieve remission. What we must do is learn as much as we can about Lupus, its symptoms, its medications, its treatments and how it affects us. Then we must take diligent steps towards doing all that we can to manage our disease, to avoid flare-ups, and to live as normal a life as we can.
I am not telling you that you should or should not try a holistic approach. That is entirely your decision. But know that, with reference to Lupus, it has not been "PROVEN" to be effective.
Peace and Blessings
08-26-2008, 02:19 PM
Hi wonderwoman and welcome -
Saysusie has given you good information here and I agree, do not NOT take any medication that is given to you - it can mean the difference between being ill and becoming SERIOUSLY ill....
I was confused in your post in how your doc said you have the type of lupus that affects your kidneys and brain, but not your heart...I am pretty sure there is no specific way to tell how and where (in your body) or when this disease will affect you. Maybe you misunderstood? There are different forms of lupus that affect only your skin and NOT your organs, but not different forms that attack one organ and not the other. Not all lupus patients ever experience organ involvement, and some only involve one organ. But there is no way to tell beforehand which will be affected and which one wont, so I would try not to worry about that.
Also, the best way to try and avoid organ involvement is to take your medicine...Also, there are many different vitamins and minerals that can help (or hurt) your lupus, as well as different foods that can help with inflammation, etc.
Again, welcome, and please let us know how you make out at the rheumie.