This is part 2 in autoimmune, (AI).
My mom and I were always into herbal health so it was easy to instruct Mr. M. on what to make for me after firing all of the medical idiots. Once I was able to see my computer again. I started in with research. I joined the lupus organizing, signed in with the Mayo clinic and Johns Hopkins. I was a mad woman learning everything I could. Gleaning what I thought would work for me and tossing the rest.
So what is lupus?
It's an inflammatory dis-ease where the immune system produces numerous auto-antibodies caused when the immune system becomes overactive and attacks its own tissues. This includes but not always in ever person; joints, skin, kidneys, blood, brain, heart, lungs, digestion, chronic fatigue, malar rash, fever and sunlight. Also damages appendix, gallbladder, eyes and teeth. For women all reproductive organs. After a few years of learning to walk again. (I did walk with a cane for many years.)I found a doctor that sat down with me and went over every medical problem I had since birth. He noted that most of my problems were from lupus. Again doctors treating a symptom and not finding out the why of it.
The testing for lupus is pretty straight forward. Certain types of blood work will tell what is going on. Then there is a criteria of 11 symptoms and if you answer yes to at least 4 of them you are considered a candidate for lupus. Except, for some fricken reason doctors don't want to diagnose.
Like all AI there are no cures. You really don't want to know my opinion on why there aren't ANY cures for AI.
So doctors and big pharma invent medications that alter the brain, reduce inflammation, suppress the immune system, and make (me) people sicker than the lupus.
Getting the right herbs, vitamins and minerals. This was difficult because I had to research each herb and its properties, making sure nothing overlapped or conflicted with. I did finally come up with a regime. However, these have changed over the decades as the dis-ease changes. That is another thing that doctors neglect to do. As one gets older there are changes in the body that may change the dis-ease and medications need to accommodate that. Now I take mostly anti-inflammatory herbs such as ginger, turmeric, cur-cumin, peperine, flaxseed oil supplements for omegas, and bee propolis.
This is the best for antiseptic, anti-inflammatory, antioxidant, antibacterial, antimyctic, antifungal, antiulcer, anticancer and immunomodulatory.
The idea is to calm the immune system. I hear people taking the wrong herbs. They take things that stimulate the immune system and then they wonder why they feel like crap. Educate before taking anything new. Prescribed or OTC.
I take a host of vitamins. NOT a multi-vitamin. Multi-vitamins make me very sick to my stomach. The list is long but some of them are magnesium for migraine, Zinc to keep normal immune, Triple Boron for bones and teeth, of course B12 for energy, and several others. A,C,D3,Calcium,B complex,and potassium. Then if I flare badly, like I am right now, I take a 5 day dose of prednisone. I am allowed to keep it on hand for when I need it. I also exercise everyday, in the form of dance and fitness walking. I try to eat right but ya know there are days I just have to have something that isn't good for me but tastes soooo good. LOL Ya know all the backing I do? I don't get to eat any of it. Sugar is horrible for AI.
I can't and won't say that any of this will work for you and I am NOT prescribing to anyone who reads this.
Remember that autoimmune IS autoimmune. If you have one you will likely have at least 1 more. Our bodies are confused and weather one takes medications from the doctor, or goes another path we all have to keep up with the research of our dis-eases and do what ever we can to keep ourselves healthy.
I have spoken to hundreds of women and men who have shared their stories with me, asking for guidance. What I tell them is this. Research, investigate, educate. Talk to medical people, join the organizations of your dis-ease, email reputable hospitals. DO NOT READ WEB MD!!! If you remove a medication find out what will take it's place, an herb, a mineral? Learn what diet is best for your AI. One of the most important things I tell people is.... Don't sit still! Move everyday as much as you can. Walk, dance, stretch. If you can't get up move sitting down. I have people tell me that moving hurts. Well it's because you are NOT moving. Once you do your body will love you for it.
This in no way is comprehensive of lupus and I didn't even speak about Sjogrens that I share with my body. However, if you learn just one thing from this then I have made a difference.
If you have any questions just email me.
Wishing all of my AI friends health and everyone else understanding.
Good post Nicole, I do the same for myself-research and figure out options,
I don't have an AI but I have other issues. For years the docs have wanted to treat my cholesterol issue with statins. I tried them one time and it nearly killed me, so I said "No, I will not take them."
I have used flaxseed oil and red yeast rice among other things to keep it "reasonable." Some of the other things I wasn't educated on enough and they caused other problems.
Two years ago, I joined a group plan through my insurance for losing weight and reversing diabetes. It worked. Many people are carb intolerant as I am. I can't use sugar or grains much at all now. That is fine, I am eating food that I love and doing so much better.
The right medical care AND being your own advocate is necessary.
...I have always had faith in the medical community.
You are your own best doctor, it sounds like! More power to you, Nicole!
I knew someone once who had lupus, and I'm glad you have resources that weren't available then. I take calcium and D. I eat prunes daily for the boron. Do you use fitness walking videos, or do you do that outside?
It's not easy to cope with this disease and you are doing really well!
I will be wary of Web MD. Thanks for sharing.
Doesn't it sound weird that in this modern era when science of all kinds has really advanced doctors can't diagnose reason behind this disease or may be they are confused or afraid of Contradiction of opinions they can face once they revealed whatever.
Thank you for sharing your story dear Nicole. You are such an inspiration and I feel proud to have you as a friend.
I have been suffering with chronic stomach issues and extreme anemia for what I been given zinc and b12 for many years. But since few years I realized that meditation physical exercise and causation with eating habits is only way to keep up with both health.
Thanks, Nicole!! :)
Woooo boy! Guess the Universe led me here today. Haven’t checked in on you in a while. I’ve been trying to get my doctor to take me seriously on AI for years. Sjogrens is in my immediate family and at one time I tested ‘between Lupus and Sjogrens’. Now years later with no diagnoses or help from doctor, my skin is a wreck and my hair is so thin I wonder if I will have any in another few years. I am still waiting for GP to schedule more AI blood work. I will go back and more closely read your recents posts related to this. Thank you so much for sharing with us.
I just left a comment on your last post and it’s as ‘anonymous’. I’m Angie from threadcatcher.blogspot.com
Everyone will and should have a different opinion. We are all different. Whatever works for one may not work for all. Being your own advocate is important and will bring you the most peace. I always try to do that but I don’t want it to take over my life.
Do what works for you especially in areas of medicine that is so poorly researched and understood. Self-care is needed as no one else will care for oneself. Hope you are managing the symptoms through herbal remedies. Problems with herbal medicine is quality control and liver toxicity.
Thanks for this honest review and instructive information on AI. I agree we must all figure out what works best for each of us. That is why I take NO medication and have to be on my deathbed before I take something for my headache.
It's important to know about your disease, that is for certain. And to get info from as many sources as possible. It's important to know how you feel too, and what works for you. My big complaint with modern medicine is that they treat all people as though they are exactly the same, and body biology is generally the same, but not an exact science. Hugs-Erika
Thanks so much for all of this info. I will now be wary of Web MD.
Thank you for the excellent two posts on autoimmune conditions, Nicole. You have been through a long and difficult journey. I'm sorry you are experiencing a flare right now, and I hope you get on top of it soon. You are so right about how doctors were viewing woman decades ago (even now). I'm sharing some of my background to back up exactly what you've said.
I have fibromyalgia, and by 1992 I didn't know if I would be able to continue to work. But in early 1993 my primary care doctor sent me to a rheumatologist who diagnosed me right away. I learned very quickly that I had to research fibromyalgia and take control of it. There was not much known then, and many doctors viewed women with fibromyalgia as hysterical or wanting attention. I had to become an advocate for myself.
Like you, I read everything I could find, and I began experimenting with different things. The first thing I learned was to keep moving. That was quickly followed by a healthy diet and adequate sleep. I learned to recognize the beginning of a flare and nail it immediately with a painkiller my doctor allows me to always have on hand. I also learned that massage was an effective treatment for me, although I had to start very slowly and with a very light touch and gradually build up what pressure my body could handle. And it's always good to engage in a passion, like your art and my photography and writing. Passions absorb you and take your mind off your pain and misery.
Then nearly two years ago I developed Graves Disease, a hyperactive thyroid condition that wreaked havoc on my body and eyes. I'm mention it only in the context of prednisone which I needed but gave me horrible side effects. Tell me ~ does your hair come back? I've lost at least 3/4s of mine.
We all need to be smart, aware, and informed about what is going on with our bodies and minds. We all need to be advocates for our medical selves. We are all unique and we have to be persistent in discovering what works best for us. Thank you for sharing your journey. I'm sure it will help or affirm someone. Take care, Nicole.
Every one of these words/points are thing to take to heart. You have done amazing work and research and while I am so sad that you are continually experiencing flare-ups, I am relieved to know you have been so proactive and not giving up. Research is essential and you are acing it. I know you must have some very challenging days but you are doing it, hanging in, having a live and I so admire that.
You have had such a hard journey with your issues starting as a baby. I feel like my issues started as a teen, but they were relatively mild and infrequent. But my immune system has been issue from day one. As a baby I had milk allergies (my mom couldn’t breast feed for long). As a teenager pollen and mold allergies that I would eventually need desensitization shots for - twice, because I kept developing new ones. Fortunately, the shots were helpful. Then fibromyalgia with little to no help (recent research indicates it is likely autoimmune too) And now PMR and sero-negative RA (my rheumatologist is in the process of diagnosing that one). The hydroxychloroquine is actually helping me - including the fibromyalgia fatigue. My inflammation markers are now normal, and I’m relieved about that about that. But I still have a ways to go.
I am so glad that you have found something that works for you. For some people such as yourself the medication can be worse than the disease. And that’s saying a lot when the disease is lupus. Like you, I research everything, and have used “alternative” treatments. I have also used magnesium for migraines. The difference was amazing! (One good thing about menopause is that I no longer have migraines. :D) And I have myofascial release body work done every few weeks. It’s made a huge difference in the stiffness that accompanies PMR.
Thanks for sharing your journey.
Many thanks for taking time to write and share both your previous post and this one ...
Sending positive and healing thoughts.
My good wishes too.
All the best Jan
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