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Belle vs. The Reaper {or How We Live Today}



I wonder how many calories you burn when your panic ramps up to the point it is hard to breathe and your fingers can’t stop typing terrifying things into Google? Can I count that in my daily calorie expenditure cause I’m pretty damn sure I burned at least 300 calories in panic alone yesterday. You see, I’m terrified of this mystery autoimmune disease. I’m horrified that my life might be consumed by chronic illness for which science has no cure. I’m SO FUCKING SCARED of spending my remaining years, however many they may be, sick and wasting away because scleroderma is making it impossible to move or lupus is shutting down my kidneys or sarcoidosis is suffocating me or…. the list goes on and on.

I waited a full 18 months between rheumatology appointments specifically because they ALWAYS send me into a month-long tailspin of panic.  It is utterly exhausting and probably takes more years off my life than whatever disease I actually have.

Last night I found myself madly Googling scleroderma. The Rheumatologist muttered this while inspecting the telangiectasias that have appeared on my neck, chest and arms. Telangiectasias  can be caused by lots of things, including pregnancy, sun damage and aging. They can also be caused by scleroderma or CREST Syndrome. Normally little red things on my skin would not bother me  however, as soon as a correlation between them and my mystery autoimmune pop up it sends me into a complete “I am going to die and leave Mr. Husband alone and without a child” melt down.

I know this is ridiculous. I see the best rheumatologist in the area – if he saw reason for alarm he would have ordered more tests than just a repeat of my ANA. I also realize that it is WAY more likely that these are the result of sun damage – I grew up in Florida, I am always outside walking or biking to work and I shamefully never wear sunscreen or cover up. OR they could have popped up from my brief pregnancy or all the bloody IVF hormones I have been shooting up and shoving in my twat. Right?

Can I get a “Calm the hell down sister”?

This morning I woke up and actually spent 5 minutes snuggling my husband. I never snuggle him in the morning. Sadly, we rarely snuggle at all these days because I’m just to over loaded to think of anything other than my broken parts and the potential Grim Reaper looming over my world. This morning I had this moment of clarity and I was able to see through all the scientific mumbo jumbo – If I am sick and my life is going to be shortened do I REALLY want to spend the time I have here worrying and pushing people  away? Dying at 35 or 85 is no different if you lead a life that was consumed with worrying about yourself.

I know this is dreadfully morbid for an infertility community. We deal with enough morbidity with miscarriage, still births and infant death. However, I feel the need to put this out there. Even though your infertility might not shorten your life, it does weigh heavily on your spirit, it does affect how we interact with people and it does hinder the person we could be. That last statement does not mean the mother you could be. It means the PERSON you could be. The person you ARE who is hiding under infertility, under lupus, under endometriosis …

Am I making any sense here?

This morning I made the conscious decision to be better. I can’t control what is cooking in my body. I can’t control that my uterus is empty. I can control what I do with my life, though. I can be a better human and make the most out of what time I have here – be it healthy or otherwise, be it as a mother or not – or I can waste it.

This morning I:

  • Chatted with the nurse at the blood lab and informed her that she is the best in the clinic and I’m always happy when she draws my blood
  • Joked with the mechanic when discussing our broken car
  • Laughed with the bus driver
  • Said hello to my coworkers
  • Ordered a cookbook and sent it to a friend in London who has recently made the switch to a GF life
  • Took three deep breaths and wrote this post

I know I’ll falter and I know, without a shadow of a doubt, that I’ll have days when I am over whelmed by all the unknowns and all the scary possibilities, but hopefully with a little effort I can pepper that panic with the memory that I ultimately still have control of today and how I live it. I don’t think worrying ever stalled the Reaper so I might as well suck it up and enjoy the day.



Post a comment
  1. July 24, 2012

    Calm down Belle, and we’ll worry for you. You know, your photo challenge helped many people in this community pass some hard times. Maybe it’s time for something distracting? Because the waiting is awful, all it does is remind us of how little control we really have.

    Good for you for cuddling with your husband and remembering to breathe. You are stronger than you know.

  2. Jay #
    July 24, 2012

    Scleroderma is associated with specific antibodies, many of which will stain positive on the ANA test- if you don’t have them, you probably don’t have scleroderma. So the ANA is enough. But also remember that if it is a low titer, it probably means nothing, a lot of the healthy population has very low positive ANA titers.

    Symptoms alone really don’t mean much. I had a friend who sent herself into a tailspin of panic that she had lupus because she had the butterfly rash, or something resembling it. 4 days later, it was gone.

    I’m a champion panicker and worrier, so I totally understand, but snuggle up to your hubby, take your vitamin D (that is REALLY good at shutting down inappropriate autoimmunity), and stay away from Dr. Google, if you can. You’ve totally got the right attitude in this post!

    • July 24, 2012

      I knew I could count on you for a little scientific input 🙂 My ANA was moderate 1:640 and I believe speckled, but I would have to fish out the notes. Everywhere I read scleroderma is not a biggie that pairs with bi-lateral uveitis, either. The eyes are the main seriously scary thing that is going on, and even that could just be a pain in my ass for the rest of my life. It is way more common than a lot of people realize. I’ll have to look into some Vitamin D – I don’t take that right now. Maybe I’ll pick some up with my lutien tonight. Thank you!

      • Jay #
        July 24, 2012

        About your titers, I can’t say, because I don’t know what the normal cutoff for concern in the human population is.

        Vitamin D is HUGE with autoimmunity. There was this fascinating study a while ago, they looked at D levels in people in Minnesota and lupus- they divided them into 3 groups, Completely healthy people with no ANA (11 % were vitamin D deficient, which is the normal in any healthy population), people with full blown lupus (70% (!!!) were vitamin D deficient) and people with ANA but no lupus- strikingly, this population too, was highly vitamin D deficient (70 % again). Basically, one conclusion one could draw was that their low vitamin D levels was allowing the breaking of B cell tolerance resulting in autoantibody production, which can drive pathogenesis leading to eventual disease—- in some but definitely all cases. You need a lot of things to go wrong before you get fullblown autoimmune disease, the body has about a gzillion safeguards against this.

        I harp on vitamin D- the one place where it is probably the most important is the immune system. I’d check your levels before supplementing though- you don;t want to take too much!

  3. S #
    July 24, 2012

    I in no way want to minimize your fears because I understand that autoimmune disorders are difficult to live with and can be deadly. Hoping for the best possible outcome for you.

    I did want to share that I have three friends with lupus and two with rheumatoid arthritis, all of whom are in their 30s or 40s, who manage to live healthy, productive lives. (They have all had children as well.) These diseases can be hard to manage to be sure, but they are usually managable with good medical care and good patient compliance. I’m sure for someone like you, who is committed to good health, the compliance wouldn’t even be in question, and it sounds like you are getting good medical care.

  4. July 24, 2012

    Amen sista, LOVE your attitude. Thanks for the reminder to live each day to the fullest!

  5. July 24, 2012

    Have I ever told you that you are amazing? No, well you are amazing. I admire your strength and perseverance. Oh and you got mad sewing skills too. 😉

  6. July 24, 2012

    Of course you make sense.

    The other side of infertility, and I do hide as a result of it, is that I’ve become a better person in a lot of ways too. I’m more aware of my personal strength and perserverance. So, when I get to the other side, mother or not, I’ll be a stronger person with more confidence.

  7. July 26, 2012

    Calm the hell down, sister, you’re making perfect sense! I’m so proud of you!

  8. July 27, 2012

    I totally second exactly what Chanel said!

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