Wednesday, July 1, 2009

Health Update

I haven't been blogging much. I haven't been doing much of anything. My boys get the best of me, the time when I am awake and well enough to do things with them or take them out places, and then I'm too exhausted for anything else. I'm having constant sore throats and aching, the weight loss has been non-existent and I was feeling as though my doctors had given up on figuring out what was going on. Depressing would sum it up nicely.

I had a scheduled appointment with my general specialist. I put it off a month ago, and was extremely tempted to cancel this one as well. Out of all my doctors I quite possibly had the least amount of faith in this doctor and the place I am in right now didn't feel confident about going to see him. Thank goodness I did, and I will freely admit I was totally wrong about this doctor.

In the two months since I have seen him, this doctor has been researching, going through all my records since childhood, in contact with all my current specialists and in touch with an Immunologist whom is going to come in on my case. I had more bloods done yesterday after my visit, ones ordered by the immunologist who will also be receiving a full account of my medical history in case he believes further bloods are necessary. At this point in time it is the immunologists firm belief that I have an active Autoimmune Cardiomyopathy. The next step for me is to have a Myocardial biopsy. Basically with a fine needle/grabber the Doctor can go in through a vein and grabby some cells off your heart for testing. While you are awake. Now, if I didn't already have PTSD I certainly will after that. At the same time I am pleased to be moving forward again, and thrilled someone is still reviewing my case and trying to work it out. I go to see the general specialist again in two months, in the mean time I see my GP on Monday and will find out about scheduling the biopsy.

The saddest thing about this past month or more that I have been quite unwell again has been the loss of a couple of friends. I knew it was most likely to happen at some point, I'm extremely unreliable when I feel unwell coupled with feeling depressed. I tend to take far too long to return phone calls, emails, post on my blog. I'm on autopilot just trying to get through the day while finding those little moments of joy, such as spending time with my Nieces and nephews or watching my boys play, to brighten my day.

Due to the weight issue as well I've not been feeling the best about myself. So the loss of these two friendships has seemed to reaffirm to me that I'm not a good person or friend to have. Then I worry about the time when I'll have no one as everyone has gotten sick of my illness.

I don't know if it was good to get this out or not, but I'll leave it. How I feel right now, but I'm working on it. The positive doctors visit has helped sooo much.


  1. Big Hugs

    Let me know if I can do anything

  2. Thank you Niki, your message has helped to cheer me up :) *hugs* for you too!

  3. I'm not going anywhere, EVER, so don't worry about that :)
    See you soon for your birthday :)

  4. Oh Claire, I am so grateful to have you in my life. Thanks for being such a good true friend :)

  5. Aw, I hate that you're feeling flared these days (or were, I'm catching up on reading and saw a later post that said you're feeling some better).

    Yay for the primary care doc who surpassed your expectations and brought in another doc who sounds like he has a clue. Yay! Although I agree the biopsy sounds horribly scary. Maybe they'll sedate you, where you're technically awake but not fully aware? I'm a big fan of Versad for things like this!!

    And sigh, I'm sorry some of your friends have fallen by the wayside. I think that's probably the worst part of these chronic illnesses -- people just don't know what to do or say, so they avoid you. I know it happened to me, too. And it's sad, and it hurts. On the upside, you find out who your true friends are (like Claire and Niki above) and I think that's worthwhile too. It's always good to know exactly who you can count on when things get tough.

    I'm enough of an introvert that after I went through a lonely period, I'm sort of grateful for the fewer friends to keep up with. That sounds bad, but it's true. It takes so much energy to keep track of everyone else's lives.

    Ok, I'm rambling and getting depressing sounding. Sorry for that! Wasn't what I set out to do. :-)


    Hoping you're already feeling lots and lots better! And that you get some good answers thanks to the new doc.

  6. Thank you Aviva, I loved reading your message, it really cheered me up. I wish you didn't know what this was like, but it's so good to hear from someone who gets all this.

    I am very much going to ask to be sedated for the biopsy!

    I'm very introverted too. We seem to be on the same wavelength :) Thank you Aviva, hoping and wishing you lots of 'good' days :)