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Hi, I’m Kat.

04 Sep

My name is Kat.  I’m 34.  I work as a bartender, but desperately yearn to do something more meaningful and more daytime oriented.  I am smart and pretty, though slightly deformed and aging; I’m in a relationship with the love of my life; I make soap; I love to ride my bicycle, hike, camp, or anything outdoors; I struggle with body image; I live in Atlanta but feel my home is in Colorado, I have a 4 month old niece who lives there.  My favorite thing in the world is to laugh.  I could tell you more, but who could ever put the complexities of a person into words, effectively?

Part of the reason I started this blog was to shed the shame I’d been feeling due to certain symptoms of Graves’ Disease Gaylord Gary’s Rainbow Disorder.  But the other was in the hopes of connecting to people with my specific and apparently rare situation.  In the past five years, I’ve searched the depths of the internet; found a single, local support group; been met with disappointment…  Most of the information out there is geared towards people who are hypothyroid either from Hashimoto’s or post RAI/surgery for those with Graves’ or Thyroid Cancer.  There is not much material out there for those of us who choose long term ATD treatment. I’d feel safe in saying that half of the  Endocrinologists in this country won’t support the patient who leans toward ATD meds, pressuring them towards a more “definitive” treatment; while the other half don’t even inform their patients that ATDs exist.

I was struck by a comment on a previous post by someone who feels like they’re a stubborn hold-out a year into treatment.  My dear, there is no reason for you to feel this way, and my guess is that when you do, it’s because your doctor prefers another option.  The generally accepted time line for remission after ATDs is between 6-18 months.  So you’re well within range.  It may be that at 18ish months, you’re advised to go off meds, but you still only know your progress 6-8 weeks at a time.  I achieved remission for over a year after my first course of treatment that lasted about a year and a half.  Also, you want to talk stubborn hold-outs…  I’ve been on ATDs for four of the five and a half years since I was diagnosed.  I don’t necessarily think this is the best course of action for everybody, but it’s the right one for me and I absolutely, 100% refuse to let any professional pressure me into doing something before I’m ready, especially something of this magnitude.  It may end up that I get surgery, but when the time is right, I’ll know it, and it won’t have anything to do with what someone else tells me.  Any medical professional in my eyes is not fulfilling their oath to “first do no harm” by not listening to or respecting their patients who live in the bodies they’re altering.

Granted, I know there are a lot of people in this country who have been raised with the mentality that you just take a pill for your ailment rather than take some responsibility to do all they can to contribute to their own total health and well-being.  I am not one of those people, but I used to be.  I think this may be where some of the doctors are coming from.  But in turn, I think they miss a LOT of people who know their bodies, who listen to their bodies, and who trust that their bodies are complex miracles that can do amazing things if given half the chance.  I also realize that there are people who tirelessly read, research, and take action, but are just met with frustration.  It makes me think of a book  I read after my second flare of hyperthyroidism, called Coyote Healing, written by a medical doctor who is also a Native American healer.  In it, he tells stories of people he’d worked with in an attempt to heal physically, spiritually and emotionally.  Many of these people who had experienced such terrible degeneration of their bodies did not heal physically and died from their condition.  However, by the time they died, they had healed.  Healing isn’t always about the body being “fixed”, but sometimes the only thing you can heal is the emotional and spiritual component.  This is what I’m looking to do, at least, though I don’t necessarily know the way.  Intuitively, I feel that connecting with others in my narrow experience of thyroid disease is the first step.

With this in mind, please, if you feel like reaching out, do so.  I believe you can email me through this blog.  If I’m wrong, let me know.

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10 Comments

Posted by on September 4, 2011 in Graves' Disease

 

10 responses to “Hi, I’m Kat.

  1. Jen

    September 5, 2011 at 8:33 pm

    Stubborn hold-out here 🙂 I should clarify that my dr is actually pretty great (though in a perfect world I’d probably have an integrative/holistic thyroid specialist) and has not pressured me to have surgery or RAI. I think my feelings of being a stubborn hold-out stem from the fact that all the people I know personally with GD have had RAI, and most of them were sort of rushed into it because it was THE treatment. It can be tough to explain why I don’t want to irradiate my thyroid to people who have had it done; I certainly don’t want to criticize the decision they made, but I’ve done well on methimazole, and aside from the weight gain (ugh!) I feel healthier than I have in years. I can’t imagine I would feel better after irradiating my thyroid, and I would hate to do something irreversible that could make me feel worse.

    It is really helpful to hear from people who have done long term ATD therapy. I’m sure it’s frustrating to go in and out of remission, but I admire your persistance.

     
    • houffenglaarfert

      September 6, 2011 at 3:49 pm

      Same here, my Endocrinologist hasn’t put too much pressure on me, though she strongly recommends… I go in to every appt with my guard up, just in case. The one time I didn’t, she told me it was time to take another approach, but that was due to an inconsistency with the meds while she was out of the country and another doctor filled in for her. I would also prefer an Integrative doctor, though they don’t come cheap and the ones who take insurance are so booked that they aren’t taking new clients…

      The weight gain is no fun. I feel like I’m constantly counting calories because it’s so uncomfortable. Even when I’m a lesser weight, I know the muscle deterioration during times of hyper have changed my body composition and I have more fat and less muscle. No proof that it’s true, but that’s what it feels like. Especially since I’ve always been athletic and I don’t feel as strong as I used to doing the same activities.

      I hear you, though. I’m happy to connect with someone who feels similar to me. Do you have any symptoms? I struggle with goiter, occasional arrhythmia, caffeine sensitivity – gives me the shakes and anxiety. Those are the more daily stuff. Also, the puffiness, yet bagginess under my eyes has become really prevalent the last year or two. I equate it with both aging and this disease taking its toll as well.

       
      • Jen

        September 8, 2011 at 10:11 pm

        I had a lot of symptoms until my levels got under control (always hot, high bp and pulse, pounding headaches, getting out of breath easily, digestive problems), but now it’s just very mild eye symptoms. My doctor said I had a goiter (I couldn’t tell) but apparently it’s gotten much smaller. I did have the big crazy looking eyes for a while but I think they’re more normal looking now. My nails are all dimpled and thin now…I keep thinking they will grow in normally since my levels are “right on the money” now, but maybe it’s the meds.

        The other week I was donating blood and the woman taking my info looked from my weight on my driver’s license (from 2004!) to my current weight (27 lb difference, though I probably needed about half of it) and said “What, did you have a baby?” I can laugh about it, and she was otherwise very sweet, but geez, what a stupid thing to say! I’ve been running more and more, and I eat really healthy food, but I guess I just need to learn to eat less. It’s hard, but I have heard of people gaining 50, 60 lbs, so I guess it could be worse.

         
      • houffenglaarfert

        September 9, 2011 at 1:38 pm

        It kills me, the things people say without thinking… I’ve read those stories as well and they scare the shit out of me. Mostly the ones where people’s lab numbers are normal, but they don’t feel well. Most of my symptoms abate when my levels come down as well, but they do fluctuate daily, and I can feel when they’re slightly up, because I’ll get palpitations. My levels have been within normal range, except for TSH is super low, so my symptoms are pretty much limited to occasional positional vertigo (happens regardless of levels), arrhythmia, anxiety, and fine muscle tremors (if I’ve had caffeine).

         
  2. Rob

    September 7, 2011 at 9:36 pm

    Bags under eyes can be sign of kidney problem as well

     
    • houffenglaarfert

      September 8, 2011 at 3:10 am

      Yes, I’m aware of that – digestion also. Just not sure what to do about it but drink lots of water…

       
  3. Integrator

    September 8, 2011 at 6:46 pm

    How about your blood sugar level?

     
    • houffenglaarfert

      September 9, 2011 at 1:34 pm

      Haven’t had it tested. Not really sure why I’d need to.

       
  4. sungtongx

    September 12, 2011 at 9:11 pm

    Hey, I just stumbled upon your blog after having sporadically kept one myself the past few years. My blog isn’t necessarily about any diseases, but I did read your post about the ten day food cleanse. I’ve heard of people doing that before but I’ve never actually attempted it myself. However, one thing that I’ve done and have also heard amazing stories about is eating raw. If you have a juicer, (or can buy one cheapest $50), you can pretty much juice vegetables and fruits throughout the day, also eating raw nuts and seeds, and find amazing results. Raw fruits and veggies are the most natural proteins… they come from the earth and are filled with tons of antioxidants, minerals, vitamins etc. Maybe try incorporating more raw into your diet and see how it makes you feel? Not that this is comparable necessarily, but it’s helped get people off heart, cholesterol, blood pressure, and diabetes medications. And regardless, it’s a really healthy natural way to be.
    Thanks for sharing your experiences!

     
    • houffenglaarfert

      September 12, 2011 at 10:51 pm

      Thanks for the info. I agree about raw. At least 50% of my diet is raw – fruit, veg, nuts, seeds – but you know, sometimes your preparedness level changes, life throws things at you and you kind of get lax on what are normally priorities… That’s where I’m at. I believe by using this cleanse to press the “reset” button on my diet, I can get back to making food choices a higher priority. Fortunately, I don’t have any of the lifestyle diseases/medications that diet contributes to/prevents and I want to keep it that way 🙂

       

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