tag:blogger.com,1999:blog-7460878777979741416.post6363027674322925248..comments2024-03-29T02:05:08.100-07:00Comments on DVArtist, Art, Food, Gardening: Autoimmune part 2DVArtisthttp://www.blogger.com/profile/18389131898875955178noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-7460878777979741416.post-71707434966517610032023-02-07T14:38:24.289-08:002023-02-07T14:38:24.289-08:00Many thanks for taking time to write and share bot...Many thanks for taking time to write and share both your previous post and this one ... <br /><br />Sending positive and healing thoughts.<br />My good wishes too.<br /><br />All the best JanLowcarb team memberhttps://www.blogger.com/profile/07961199165290289611noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-22055421673943708902023-02-07T07:17:59.434-08:002023-02-07T07:17:59.434-08:00You have had such a hard journey with your issues ...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. <br /><br />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. <br /><br />Thanks for sharing your journey. <br /><br />Michelle <br />https://followingmymuse.space Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-33855469124970977772023-02-05T06:59:49.309-08:002023-02-05T06:59:49.309-08:00Every one of these words/points are thing to take ...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.Jeaniehttps://www.blogger.com/profile/17482528482559445943noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-11548648067828204092023-02-03T15:03:53.568-08:002023-02-03T15:03:53.568-08:00Thank you for the excellent two posts on autoimmun...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. <br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.<br />Fundy Bluehttps://www.blogger.com/profile/02132147630106183853noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-50659439193242049082023-02-03T07:30:35.155-08:002023-02-03T07:30:35.155-08:00Thanks so much for all of this info. I will now be...Thanks so much for all of this info. I will now be wary of Web MD.Debrahttps://www.blogger.com/profile/03982370018359352543noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-73348826674403867582023-02-02T16:47:53.031-08:002023-02-02T16:47:53.031-08:00It's important to know about your disease, tha...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-ErikaMy name is Erika.https://www.blogger.com/profile/04834435573574156495noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-71113187541758935582023-02-02T16:16:03.633-08:002023-02-02T16:16:03.633-08:00Thanks for this honest review and instructive info...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.<br /><br />Bleubeard and Elizabethhttps://www.blogger.com/profile/10149710375520733752noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-90882732711576707812023-02-02T13:11:39.123-08:002023-02-02T13:11:39.123-08:00Do what works for you especially in areas of medic...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. roentarehttps://www.blogger.com/profile/11935487193733829245noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-91453160002661995582023-02-02T10:34:57.496-08:002023-02-02T10:34:57.496-08:00Everyone will and should have a different opinion....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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-4286309919410210372023-02-02T10:06:19.136-08:002023-02-02T10:06:19.136-08:00I just left a comment on your last post and it’s a...I just left a comment on your last post and it’s as ‘anonymous’. I’m Angie from threadcatcher.blogspot.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-92113575208840367062023-02-02T10:03:41.423-08:002023-02-02T10:03:41.423-08:00Woooo boy! Guess the Universe led me here today. ...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-68152096949356115012023-02-02T10:00:52.464-08:002023-02-02T10:00:52.464-08:00Thanks, Nicole!! :)Thanks, Nicole!! :)Ritahttps://www.blogger.com/profile/02043285884495492598noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-89255693627337794452023-02-02T09:47:01.089-08:002023-02-02T09:47:01.089-08:00Doesn't it sound weird that in this modern era...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.<br />Thank you for sharing your story dear Nicole. You are such an inspiration and I feel proud to have you as a friend.<br />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. bailihttps://www.blogger.com/profile/06498012175058870980noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-58680201491298215092023-02-02T08:13:06.073-08:002023-02-02T08:13:06.073-08:00I will be wary of Web MD. Thanks for sharing.I will be wary of Web MD. Thanks for sharing.Christinehttps://www.blogger.com/profile/15720030744345215307noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-32804722605605320602023-02-02T07:53:40.378-08:002023-02-02T07:53:40.378-08:00It's not easy to cope with this disease and yo...It's not easy to cope with this disease and you are doing really well!Valerie-Jaelhttps://www.blogger.com/profile/01538850820168903865noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-36827926616675944872023-02-02T07:44:19.418-08:002023-02-02T07:44:19.418-08:00I knew someone once who had lupus, and I'm gla...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?Divers and Sundryhttps://www.blogger.com/profile/01759655568104782267noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-60437734519232737662023-02-02T06:04:45.085-08:002023-02-02T06:04:45.085-08:00You are your own best doctor, it sounds like! More...You are your own best doctor, it sounds like! More power to you, Nicole!Debra She Who Seekshttps://www.blogger.com/profile/01845703092794695023noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-40002904492770635622023-02-02T04:35:09.216-08:002023-02-02T04:35:09.216-08:00...I have always had faith in the medical communit......I have always had faith in the medical community.Tomhttps://www.blogger.com/profile/04082494067802628837noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-32916996345875029812023-02-02T04:21:19.653-08:002023-02-02T04:21:19.653-08:00I don't have an AI but I have other issues. Fo...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." <br />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. <br />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. <br />The right medical care AND being your own advocate is necessary. Gene Blackhttps://www.blogger.com/profile/15731141629634998152noreply@blogger.comtag:blogger.com,1999:blog-7460878777979741416.post-9922936846979189982023-02-02T04:17:15.099-08:002023-02-02T04:17:15.099-08:00Good post Nicole, I do the same for myself-researc...Good post Nicole, I do the same for myself-research and figure out options, kathyinozarkshttps://www.blogger.com/profile/01644138355524729156noreply@blogger.com