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Thread: my vent rant

  1. #21
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    Wow, thanks for the tip on the antibiotics Sangye. I wasn't aware of that. I try and rotate my stock but I will have to take extra diligence on those things that expire- lest I hit my own expiration date.

    I know what you are saying Sangye about over and under reaction and I'm sure you are not missing the attitude of Marta's doc . That to me was what was so offensive. WG is very difficult to deal with and the 'right' choices are not always made. I accept that. I forgive my docs their humanity but first they have to show they have some by not being rude and dismissive. We weggies are a pretty easy bunch to talk to as far as I have seen and are as deserving of respect and compassion as the next crazy auto-immune person.

    WG requires an unusally high level of docs being able to listen to their patients. Many docs don't have what it takes. In my experience they can't be taught either and when I run into it... I run away from it and find a doc that can listen. Thats all I want is to really be listended to. Then we cook up a plan. Its really not that hard for those with the apptitude- just a touch of compassion, humility and open mindedness. If they have, or develop a deficiency in one of these then the patient suffers.
    I have been able to defibrilate my doc with a touch of anger when he starts to pass out on one of these qualities but doing that won't work a long time.

  2. #22
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    Quote Originally Posted by marta View Post
    I love you guys. Thanks. It's nice to hear that I'm not over reacting, but I knew that we'd be on the same page.

    .
    I think you are lucky to find out the doctor's true character before you really needed their care for an even more serious situation. Hopefully you will find a competent doctor that remembers patient care is what they are supposed to provide.

  3. #23
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    Marta. I'm speechless. What gall to call you up just to ream you out.
    Jolanta

  4. #24
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    Thanks guys. I'm so glad I've found you and have you to lean on when I'm feeling poopy. I'm still feeling crappy, my esr is now at 35 - after being at 11 max throughout the entire summer, and my head is killing me. I went to see the local doc today but she's off (I'm also sportin' a UTI - woo hooo) so I'll see her on Wednesday to do the referall. I also see my other GP that I've been going to since the get go on Friday and see what she has to say. I'm OK with having to go back up to the big guns if we have to, what I don't like is the prospect of letting it smoulder and do damage underneath while we sit here and guess.

    Am I correct in my assumption that you know you're flaring based on a combination of symptoms (as per the patient) and blod/urine analysis? If that's the case that I don't know why buddy would be sitting on his hands. Oh well. I'll figure it out. I'm going to take some decongestant and see if that helps the headaches a bit.

    On a much lighter note... Last night was Halloween and I sat at my door (I took out the window part of our screen door) and sat inside reading my book with a light above me and the rest of the house all dark. I put on a witche's hat and painted my face green, put on a blue bunny scarf, covered myself with a blanket so I don't get cold, and the effect was hillarious. Kids were genuinely spooked when they came up to me. It was hillarious the effectiveness of such minimalist effort. " How much is that Weggie in the Window? - woof woof" I did look scarry. Here's a glimpse. Hana dressed as a witch too, so here's a little mother daughter witch action...

    Attachment 774

    Take care everyone and thanks so much for the support. It's interesting to see how many have headaches as their main, nasty, early sypmptom. It gives me ammo.

  5. #25
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    Marta, you are learning very well. With an ESR that has climbed like that in a short time with nose and sinus pain and bad headaches it may well be a flare. But it could be a sinus infection too. I have learned to keep track of my ESR, CRP, White cell count, Creatinine, and ANCA. These results, along with symptoms, allows me to better gauge what is going on. For me the C-ANCA is a very reliable marker for disease activity. When I am in remission it is usually below 4 and sometimes 0, but when I am flaring it spikes up to the 20's or higher. But I usually rely on my symptoms first to let me know what is going on and then if I am in doubt I look back to my blood work. It is a good idea that you get copies of your bood and urine results - good for you. I hope you can get to see this doc in Calgary right away. Let us know when you get to see him and maybe I could meet you there. There are some other Weggies in Calgary that I have talked to as well. You will know soon if this is a flare or not. Try and look back to when you were first sick and go over your symptoms again and see how they progressed and this will probably give you a better idea of what is going on.

  6. #26
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    hi marta
    you have my sympathy on the headache front it was one of my major problems when i first flared it got to the stage when i could not let anyone touch it'
    imuran not holding things down at mo and have been nursing a sore head again this weekend waiting for blood results from today before wg consult decideds what to do
    when i have the headache i sometimes feel dizzy too
    and does not always affect my eyes but i know this might silly but i get a buzzing noise !!!
    hope things work out for you DEEx

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    Dee, you don't sound good. Let your doctor know about the dizziness. Yes, a bad/severe headache that doesn't go away despite decongestants and antibiotics is a good indicator that the WG is behind this. Been through this many times.

  8. #28
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    I agree with elephant. ESR is one of those numbers that rises slowly and decreases slowly, but C-reactive protein and platelet numbers are very good at showing changes in inflammatory response over short periods of time.

    It takes months of treatment and discussion with your doctor to figure out whether P3 numbers and ANCA numbers will ever 'mean' anything to your particular case beyond their use in your original diagnosis. My P3 numbers started close to 100, and have now 'bounced around' as my doc says, in the 60s since the spring. Yet, in three months, if the current clinical (no symptoms) presentation holds, he will start reducing mtx with the goal of medication free remission.

  9. #29
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    Marta, I don't know how things work in Canada. I'm wondering if there's such a thing as an urgent referral. Your ESR and symptoms are disturbing.

    Dee, I hope your Wegs doc gets things sorted quickly. I agree with Elephant--sounds like Wegs.

  10. #30
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    Quote Originally Posted by marta View Post
    ...the effect was hillarious...
    " How much is that Weggie in the Window? - woof woof" ... Here's a glimpse.
    ...here's a little mother daughter witch action...


    Attachment 774

    After reading this, I became very curious.
    ...onfortunately the link doesn´t work...

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