Thyroidless Fellow Sufferers

I have not been able to write anything these past days. People tell me they travel, they get out to enjoy the weather, and hope I can do it too.  I know they mean well, and I wish I could tell them I do all that too, but most days now I cannot get out of bed. I even had to miss my yearly physical today. If Guido had been able to drive me I may have gone, but he was there having his physical!

There is comfort out there. I have joined two Facebook groups, ThyroidAssociation NewZealand and Stop The Thyroid Madness, and I get many good tips and advice.  I have also joined a support group, Thyroidless.  The advantage of belonging to an online group rather than to a “physical” one is that it covers the whole country –and also Canada. Besides, I can ask them questions and read their posts any time of day or night.

It also helps me to know that I am not alone.  Here is an example of a recent post that is almost what I would have written (I did, but in a different way). I got the writer’s permission to publish it here:
My name is M. I am a 47 yrs old and had a total thyroidectomy in December 2009 due to thyroid cancer.  I am interested in speaking to others who have gone thru this nightmare.  I take 3 grains of Armour each morning but I still feel as if I have been dragged thru the mud or run a marathon on a daily basis. My life has changed so drastically. Some days I cannot even get out of bed. My appetite is gone, eating is a chore, no longer a pleasure.  My skin is so dry and itches constantly. My hair has stopped falling out. Yay for that!  I do take B12, Vitamin D, and Calcium, and have had to resort to Ensure supplements to keep from fading away completely.
I would love to hear from others who have had this issue and what worked for them.
Thanks for listening.

Several others put together:
Does anyone else get the questions from people asking how you are doing thyroid-wise and symptom-wise and then if you just tell them a tiny bit, they totally don’t understand and often get patronizing. It makes me sound like an idiot when I talk about the support groups on the internet – you know how people talk about all the crazies on the internet!! And, then when you mention the books, the constant research & learning about new stuff related to this disease, they just can’t relate.
Just today I was asked how I was doing – like, haven’t I settled down with this disease yet, do I really need to get labs so often & check in with my doctor so often – what is wrong, I seem to be ok….. I say, yeah, I’m doing somewhat better, but it takes a while to get optimized. It is rather complicated and a lot of stuff needs to be in place for things to work well.  Then they patronizingly say…. well, isn’t this perhaps just aging.  Before my surgery 5 years ago I was quite a bit stronger  and a lot fewer respiratory infections & aches. I am a really fit 61-y/o and I want to feel as strong as I was before surgery.
One just gets to the point where you have to keep your mouth shut & not let people know how very much you read about everything to do with thyroid and adrenal health because they have no way of comprehending what it is all about & think you are obsessed rather than learning a lot of very valuable information pertinent to your present & future health. Also, if I try to offer advice to someone else w/symptoms, they don’t seem to want to hear it & they certainly don’t want to have to do the work involved in getting well.  It’s easier to say “c’est la vie.”
Can’t talk about it anymore. People say:  You look great and feel that if you are walking and talking, then, what’s your problem.  I don’t go out a lot because of all the issues.  Tired of explaining myself.

And, please remember this, after getting out of med school, the only training docs get is from Pharmaceutical companies! They wine and dine them at resorts and “teach” what they (the pharms) want them to know. This is why for 28 years every doc gave me the same stupid little speech about Synthroid being great and natural animal thyroid being “unstable”! I kept telling them that companies were NOT making a batch of medicine with a dozen pig thyroids, but with hundreds or thousands, and therefore it was likely that the meds WERE stable!  Turned out of course that Synthroid changed their recipe many times and were more unstable than most meds the world has seen!
*******

I was about to apologize for all this, when I realized I should not.  After all, this is not going to anybody’s mailbox, and those who have subscribed to my blog (thanks so much, by the way) can choose not to read it. On the other hand, people who don’t know me may read it because of the title, and I may have been able to help somebody. Who knows?

 

 

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About martisima

After over 50 years of teaching literature to undergraduate and graduate students, I feel I have earned my retirement (it happened when I was 72, five years ago). I do miss the classroom, however, but not the meetings and all other requirements of the profession. I love teaching, and wish I could still do it. But now I read for pleasure, and watch films, and listen to all kinds of music (no TV, though). I love to travel, and hope I can resume doing it soon. I need to get over my health issues caused by thyroid surgery three years ago!
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3 Responses to Thyroidless Fellow Sufferers

  1. Of course you shouldn’t apologize! And I know that anyone not going through what you are can’t really understand, but it all makes sense to me. I think it’s great you’re finding information and others going through the same thing on the Internet.

  2. Rafael says:

    If someone hasn’t walked a mile in your shoes, they won’t have any idea how difficult your particular path is. And from what you’ve expressed here and before, you are walking a difficult path. There is no shame in acknowledging the challenge.

    Of course, it may not be realistic to expect others to appreciate your shoes and your path. I heard a person with disabilities say that all “normal” people are only “temporarily enabled”; eventually we all succumb to illness, accidents, and aging. Eventually we’ll all have to walk a path that’s more difficult than the one we’re on now. It’s just a matter of appreciating that our “temporary enablement” is just that: temporary.

    Take courage, Martha. Your path may be harder than is fair, and your shoes may hurt more than they should. But every step you take is a step *only you* can take. So it’s your path to tread and your story to tell. No need to apologize.

  3. martisima says:

    You do have a way with words, dear Rafael. Thanks so much for your support and for your understanding!

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