Tuesday, July 24, 2012

what i heard the specialist say and a wee bit of a rant about it.

i heard him tell me that i am more anemic now than when i started this whole journey 3+ years ago
and then i asked him to print out the numbers for me and there they were...
lower and lower
i'm at an all time low.
and  that's pretty darn low people.

i heard him tell me that i was making my life more difficult for myself by being on a liquid diet and that there is no reason to not eat whatever i want to.


he told me that my reactions to food have nothing to do with my colitis and i have a different disease that is causing the flares and the love affair i have with the bathroom.

he told me that  the side effects to the remicade were not good and that it wasn't working  since i'm not in remision and so i wouldn't have to take it anymore.

the call was made. the remicade was discontinued.
just like that.
a gut wrenching decision that took me so long to accept was so easily reversed.
i found this disconcerting. even though i don't want to take the medication i still was rattled by the ease of the decision.

that was after i described my recent symptoms and side effects and he asked me
"are those known side effects of the medication i put you on?"

does he not know? does he not know?
this was not some easy going medication. remicade is serious stuff.
 i just think he should know.
that's all.
just know what you are giving to people who are trying to trust you and trying to get back to living.

he spoke about the waste of money it was to eat organic and how there was no difference between the two
and i tried to explain that i grew my veggies and my mom in law provided me with kefir
i wasn't wasting money i felt like i needed to say
i'm trying to get my life back.
i felt like i needed to defend myself and i'm not good at defending myself and i cried hot tears at this point.

"what's kefir" he asked?
and then proclaimed no difference between raw goats milk and store bought cow's milk.

he was full of proclamations
and no answers
and i felt like i was frustrating him because i'm not responding to the treatments the way i should be and i'm not improving no matter how many prespcriptions we try.
the next one's are all in the research stage and i whispered
"no thank you, i'm not really into being researched on"

and finally, he looked me up and down and said
"you're not really sick. you don't have a fever or malaise do you?"

and i reilized this relationship was over.

i cried all the way to the beach.
and then i let the wind and the waves wash away the anger and the confusion and the hurt and the shame.

when owen got home from work i asked him if what i heard was true
"did he really say those things?" i asked him,
wondering if maybe i was misunderstanding and too upset to be accurate in what i was taking away from the visit.
i think i was secretly hoping he would say yes.
yes, i did hear wrong and here is what he said...

but owen shook his head,
 looked at me with great sadness in those hazel eyes of his because he had been there with me and he knew, just a little bit, how hard that whole visit would have been for me.

and again i'm staggering.
 not under the weight of loving words though, like last week.
just under a weight.

i looked up the definition of malaise this morning.
check it out..i think it  describes how i've been feeling pretty accurately.
i guess my outside's just don't look like my insides so i can trick people still.
should have worn my pj's and not done my hair.
maybe then he would have taken me seriously.

oh life.


  1. Oh my gosh I want to walk right into that doctors' office and give him a big piece of my MIND! The piece of my mind that is attached to my FIST! GEEZ! God save us from our doctors, seriously!!

    1. "God save us from our doctors"...i love that:) thank you for offering up violence on my behalf but really there must be a better way- perhaps a sharing circle with a talking stick;)

  2. arggghhhh I know exactly what you're talking about... I keep my GP so I still have access to the medical system for ex rays and tests and fortunately, if I steel myself and tell him what I need, he's pretty good however, I do not leave without some kind of dismissive lecture... other than that, I consult with my Naturopath and walk away feeling heard and even counselled.... I'm so sorry that happened to you... keep looking for the right health practitioner.. seek and you will find, knock and the door will be opened, ask and you will hear your answer.... love you (((hugs)))

    1. Thanks for the love April. I have just started building a telationship with a maturopath:)

    2. I would also have to recommend the "Naturopath route". A friend of mine has been struggling for years with a unique form of chrones, and she, too got nowhere with doctors except, she tried remicade and pregnozone without much success and was then offered to be "researched on" with new drugs...she's been seeing her Naturopath for years now and it's not perfect but she has more good days than bad, and definitely feels the difference between when she's taking her remedies and when she runs out. What an a$$ that doctor is, I am so sorry Tania! And just because he's a doctor doesn't mean he knows what's right for you, AT ALL. Why some have to suffer so much I don't know, but keep asking God for direction and then keep doing what you believe is right. I have watched my friend struggle along and it's just not easy. HUGS to you :)

  3. Oh my goodness Tania, I am so sorry this happened! This doctor does not know the Tania we all know, the Tania who has and is struggling to be so strong and so badly wants to be well. His cruel words are proof of his ignorance of how to treat people with dignity. How could this doctor tell you that you are anemic, and then ask you if you are really sick? Seriously? Don't doubt yourself and your efforts towards wellness. Big hugs to you, my dear <3

    1. I love you and your love for me. Thank you!

  4. is he ALLOWED to say those things?!? of all the nasty twits!

    can you get a new specialist? or maybe a naturopath who actually knows things? or ANYONE who will listen?

    I love you! don't let him tell you how you feel.

    1. I know, right? How does he know how i feel? I barely know how i feel from one moment to the next! And yes, i found a naturopath and am going to see what happens there.

  5. I think you should take Becky up on her offer. Or maybe get her John to do it - he'd plant the guy into the opposite wall. And we'd all stand around and cheer and tell Dr. Jerk he's not really hurt. No fever, no malaise. But we would offer him this experimental pain-killer, presently under research by baboons...

    It was the forebears of this guy who refused for a century to wash their hands - even after the proof was right there in front of them. They probably talked just like he did. Jerks.

    So guess what? You get to be in total control of your own research and diagnosis and treatment...goody-goody-goody. But at least there's no where to go but up!

    Love you. Keep kickin'.

    1. P.S. Eat some beets. Want any liver?

    2. Oh, i think there might be some down before up sister of mine- this body is pretty mixed up inside. Yes to beets! No to liver, but thanks:)

      When i first read your comment i thought ypu were offering up YOUR John and i was so confused. I told Hannah that i was sure violence was not his way:) i am glad i double checked:)

      And the total control thing- scary for a girl like me...i shall become so clever and bossy with myself amd of couse lavish myself with love too xoxo!

    3. Oh, i think there might be some down before up sister of mine- this body is pretty mixed up inside. Yes to beets! No to liver, but thanks:)

      When i first read your comment i thought ypu were offering up YOUR John and i was so confused. I told Hannah that i was sure violence was not his way:) i am glad i double checked:)

      And the total control thing- scary for a girl like me...i shall become so clever and bossy with myself amd of couse lavish myself with love too xoxo!

    4. Ha! No, that's not my John's style. In our marriage, all the belligerent righteous-indignation is fully my responsibility. 'Cause I'm good at it (or at talking it, anyway). And - I think clever and bossy and loving sounds like the way to go!

  6. How horrible to be on the receiving end of all that crap.

    He asked YOU what the side effects were?

    Your food reactions have nothing to do with the colitis AND you should be eating whatever garbage is in the grocery store?

    No difference between raw and pasteurized, pesticides and no pesticides?

    You have anemia but you're not sick because you don't have a FEVER??

    And the worst of all...having to defend your choices against the arrogant hostility of an Authority Figure when you are beaten down by sickness already.

    I'm so glad you're free of him and his drugs. But unfortunately you are free to do all the research and experimenting yourself.

    Blow the hurt and shame and confusion back at the doctor, but keep the anger. He was wrong and you were right.

    1. Thank you mama bear:) i have much to learn from you about following one's own path.

  7. I send love. I send light. I send shared fury at this man's insensitivity. I have no answers, but I have lots of prayers. And I am praying them. LOVE TO YOU!

    1. thank you Erin! Love right back to you!!

  8. Here is one more Stearns-Smith women seething at that miserable doctor!!! I am so sorry you had to go through that! At least now you can try other things feeling like you gave the medical establishment all the chance it deserves. Not that they are all as bad as Dr. Jerk. It's just that "There are far more things in heaven and earth then are dreamed of in their philosophy", so to speak... And they hate that. I have been, and will continue to, pray that you find some answers and relief. LOVE from Madison!