From A to Z

K is for Knowledge

img_9065-1K: Knowledge

They say “Knowledge is Power”.  I believe that knowledge can also be growth, compassion, and love.

Have you been diagnosed with DM?  Has a loved one of yours been diagnosed?  Are you looking for answers for strange symptoms that have been happening to you lately?  Could it be DM?  I can not make a diagnosis or assist medically but I can give you what I know and have been through in hopes to make further sense of it all .  This is the mission of my blog after all.

You are a DM fighter.

If you have been diagnosed with DM you know all too well what we autoimmune warriors go through.  You know that everyday can be different and that the roller coaster ride of living with an autoimmune disease can be extremely nauseating and stressful.  There are two different circumstances you could be in right now:

  1. You are on your daily regimen of medications and battling those meds all the while battling the actual disease.  These medications help us in our desperate time of need but can also have unsettling side effects.  When our bodies have reached that point of no return and our immune system starts to work over time this is when we are prescribed the medications and then after a while of being on them you are ready to be off of them.  It’s a double edge sword really…you are grateful they saved your life and now you are ready to say goodbye to them.  If you are like me, you are at a point of wanting to find a way to help the process of finding a time of remission, hopefully a lifelong one.  This is where a new lifestyle change is in order.  I have found that leading a lifestyle of eating non-inflammatory foods, cutting out dairy, grains, gluten, sugar, caffeine, and eggs has already helped my overall being.  It will take time but with persistence and devotion to a happier and healthier life I hope to be in remission sooner than later.  In future posts I will be going into more depth on the steps I am taking to get there.  Just remember to be patient and hopefully in time we will get there.                                                                2b09fa06d76bacc58b877594665a15ea
  2. You are in remission!  If you are I am sending you a huge congratulatory hug, high five, and a happy dance!  If you are in remission, please share your story of how you got there.  What did you do, if anything, to help get there?  How long did it take?  How long have you been in this beautiful world of remission?

Your loved one has been diagnosed.

If your loved one has been diagnosed, either recently or they have been battling DM for some time now, it is always a good time to learn more about what they are going through and possible ways to help and support.  I know that when a loved one of mine is sick in anyway I feel inclined to help in any way possible so let me help you out with a few tips.

First, let’s take a look at how they might be feeling.  Everyday is different but they could be feeling extreme fatigue, weakness, dizziness, mood swings, insomnia, itching, pain in the joints and skin, headaches, and nausea.  While the DM causes the weakness and rashes that itch and are painful, the medications can cause all of the above and more.  Please do them a favor and if they are not feeling up to much today cut them some slack. Even though they may look fine on the outside, they are fighting numerous battles on the inside.

They will have many doctors appointments and blood tests done.  My blood is drawn every two months now, it used to be every two weeks in the beginning.  This is due to a medication I am on and the doctor needs to monitor how my body is handling the drug.  If your loved one has children maybe offer to watch their little one(s) during these times so that they can get the most out of every visit.

If they are starting a new direction, such as myself, and following an autoimmune protocol diet be supportive and help them not be lead into temptation.  Yes, those brownies might seem like a nice gesture but it is far better to gift them sweet fruits that won’t hurt their progress.  Ask them what they can eat instead of what they can’t.  When we list the “don’ts” it is far more exhausting and overwhelming than listing the “cans”!  Last but not least, please for the love of all things holy, do not, I repeat do not criticize or question their new lifestyle.  Do not interject your opinion on why gluten free is a fad and that it doesn’t make sense for them to be gluten free if they are not celiac!  Until you have stood a day in their shoes and are facing what they are facing, please, let them be.  Support them.  Help them rise up and stand by their side.

I also urge you to learn as much as you can about their diagnosis.  This way, even though you will not physically know what they are going through, you will have an understanding of the disease and what it entails.  This will help your loved one not feel so alone in the process of all things autoimmune.

Knowledge is Power, Growth, Compassion, and Love.

The following websites are great resources for all to visit.  If I can be of any help, please feel free to contact me as well.  Happy Learning!

 

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10 thoughts on “K is for Knowledge

  1. I have amyopathic dermatomyositis (I don’t have the muscle involvement). I am trying to find the page with your story, especially what you did to allow your body to go into remission. I am treating with a functional medicine doctor, but still feel like I am taking three steps forward and two steps backward (sometimes three!). I have lost half my hair and have large bald spots on the back of my head, not to mention my skin issues. I am treating with probiotics, prebiotics, omega 3, turmeric, vitamin D, melatonin, DHEA, magnesium and I am on a gluten, dairy, sugar and alcohol-free diet (I fudge on the alcohols sometimes). I have been on the diet for a year now and have been treating with the supplements for four months. Just this last week, my skin turned bright red (especially on my chest and face) and I’m itchy all over–a major regression. I could really use some encouragement, but don’t know anyone else in my situation.

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    1. I am so sorry to hear of your struggles! It is a rotten disease to deal with!! I️ followed Dr Amy Myers, she is a functional medicine doctor out of Texas. Her book The Autoimmune Solution changes my life! Are you on any medications?

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      1. i tried Plaquenil, but had an allergic reaction. I’ve tried methotrexate and it made it worse. I tried chloroquine and that helped, but the side effects were awful. I’m not on anything but supplements right now. How long did it take you to go into remission? I’ll check Dr. Myers’ book. My doctor had me read The Immune Recovery Plan by Dr. Susan Blum. i think it’s very similar to Dr. Myers’ strategy.

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      2. Have you been on Prednisone yet? I am fully 100% behind healing with food but trying to get the inflammation tamed down a bit in the mean time will help you out. How about IVIG? I myself have not done that but I️ know others who have and had success. It took about 3 years for me to hit remission. I️ was on all my meds and tapered off as soon as I️ could and followed my diet strictly.

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  2. I was on prednisone when I first showed symptoms because they thought I was having an allergic reaction (seven years ago). It’s really been under control until this last year, which is when I starting working with a nutritionist to change my diet and she introduced me to functional medicine. I have been working with a functional medicine osteopath for six months and have been on probiotics and prebiotics for four months. I haven’t tried IVIG, but I just read about it and was going to ask my doctor about it. I know there is something I am doing/eating that is triggering the redness, itchiness and inflammation, but I’m having a hard time figuring out what.

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    1. I️ am going to assume you are on an elimination diet or Atleast started one before. My triggers that I️ know of so far are rice and eggs. We do know that gluten is a culprit to a leaky gut especially since we are “over glutenized” as a whole. Have you kept track of what you eat and to see if you notice a difference?

      When I️ first started showing symptoms I️ was told to take a Claritin! How did you respond to Prednisone? I️ don’t think it did much for my skin problem come to think of it, it helped more with my muscles (I️ know you don’t have that part so kind of a null point).

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  3. I did a complete elimination diet with my nutritionist (no gluten, dairy, sugar, caffeine, alcohol, rice, night shades). The strange thing is, my skin symptoms got worse! When I started seeing the functional medicine osteopath, I added back in rice and night shades, but am basically off the others. I still have never completely cleared up, so it’s hard to reintroduce things to see if I react. That’s the most frustrating part! When I went on prednisone, it cleared up the skin beautifully and when I went off, the skin rashes came back. That’s when we knew that it wasn’t an allergic reaction.

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