1.1.13

Remission, now what?

I typically post about diet and exercise and how you can alleviate lupus/autoimmune symptoms through those means. Looking back over emails and comments that I have received over the past year, I see that many have found this information helpful. I'm so glad that I have had an impact on or helped at least one person!

While my disease is completely under control, I have never talked about the other problems related to lupus that I still have trouble with despite my remission.

My lupus markers are still positive. I still test positive for antinuclear antibodies (ANA) and I still test positive for anti-double stranded DNA antibodies (anti dsDNA). I still test positive for Sjogren's syndrome. I don't know if those will ever change, I hope that one day they will and I'll be rid of any evidence of ever having lupus. These markers don't give me any physical problems as they are just measures of antibody presence but it is a reminder that my body doesn't forget easily and is still armed to attack my own dna, tissues and organs.

My immune system is an all or nothing kind of defense system. When I am in a flare, it works overtime, overproducing white cells and antibodies that literally destroy my body from the inside out. But when I'm in remission, as I am now, it pretty much goes on vacation, only to react to really serious things like flu (in a very untimely fashion). My 'normal' white cell counts are incredibly low when I'm healthy/lupus symptom free. This means I'm at the mercy of colds and flus, especially in winter. I have felt really well 4 days the entire month of December. This year is pretty bad because I have 3 kids under the age of 5. So, between kindergarten, playgroups and childcare at the gym, I really don't stand a chance! I do not get a flu shot because I instantly get the flu or some other nasty sinus thing. While this sounds awful; compared to taking meds and chronic pain, I'll take a month or 2 of this anytime!! I am weary of taking any supplementation that boosts your immune system like echinacea, etc. I avoid them altogether because I'm afraid of triggering an immune response that gets out of control.

Finally, I still have a teensy, tiny voice in the back of my head that wonders every night before I fall asleep if I'm going to be able to get out of bed the next day. Everyday that I get up symptom-free, that voice gets smaller. I wonder how long it will be there?

::Robyn

5 comments:

  1. I am so curious about your diet? I was diagnosed in Sept of 2012. I wish so bad I could run away since my pain sometimes is so unbearable. I also have two young boys and a very hard working husband. Are you currently on meds? How long did it take for you to go into remission?

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    Replies
    1. I'm sorry you're in so much pain, I know exactly how you feel. I talk about this a lot in past blog posts but the short of it is this, I was pretty much pain free after only a few weeks going paleo and I was med free after a couple of months (I had to wean off). It has been just over 9 months since I gave birth and I'm still symptom/pain/med free despite the fact that most women have major flares after pregnancy. I feel fantastic (except for this cold/flu season with a kindergartener)!! Please read all my prior posts to get a sense of my journey and start researching this way of eating. It changed my life and if you're willing, I know that it will minimize, if not get rid of all together, your pain, stiffness and overall state of dis-ease.

      I also have a facebook page that I update daily that you might find interesting https://www.facebook.com/PaleoForLupus.

      Please, if you have questions, just message me on my facebook page or comment on the blog. I'll get back to you as quick as I can!

      Delete
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