Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Poor Megan

Hi Megan...Big Hugs & Much Love!!!

What a good friend you are, Lisa

Hope that even if Megan isn't able to read these messages right now, she can sense that we are all thinking about her, and look forward to hearing about how she is progressing

a way will be found to figure out what is going on, I'm sure of it!

Oh Megan I'm so sorry you're suffering so badly right now and the docs are no help. It makes me FURIOUS and it's a complete injustice that you are going thru this. I'm not a doctor-hater but yours need a slap big time!

I feel so helpless and just wish I could do something for you my friend.

Please hang in there and just take it day by day or hour by hour as you probably have to!

Lots of Love

Dearest Megan, we love you
You are at the top of my Prayer list sweetie.

Cindy

Megan - I am so sorry this is happening.

Lots of love and hugs and big wishes for you to feel better soon and that someone will get to the bottom of what you're dealing with.

Hope you feel better soon, Megan.

Megan

I hope you start feeling better soon. We miss you here!!

Dear Megan,
I am so sad to think of you struggling right now. You are such a presence of light here. Please know that I am thinking of you, sending you best wishes for healing. I am imagining you feeling well, the pain lifting, and your lovely smile. Please let me know if there's anything you need, and know that I am always just a PM away if you want me to listen.
xoox Jan xoxox

I often think of you, Meggy. I hope that the info Gerry has will help you get the treatment you so desperately need. I wish there was something more I could do for you. Hopefully your spirits will be boosted by all the messages here.

Oh you guys.... you all are just the best, most awesome, hugely caring people on the planet! Thank you so much. It means the absolute world to know there are people out there who care. I'm really not coping so well anymore, so the hugs and well wishes are very encouraging.

I just keep getting worse, and it's really, REALLY hard dealing with the "nothing wrong with you" from doctors when I'm barfing all the time and the neuropathic pain is through the roof. Fighting depression now. My hematologist (after cancelling the last 2 appointments with me, long story) has decided I do NOT have porphyria, but I have all the markers and symptoms. That's fine with me - it's not like I WANT to have it - but it would be nice if he would help me figure out what's really going on then. He only ran 2 tests on me - a CBC and urine porphyrin markers. I argued with him again that I DO have AS, since that whole crazy thing where my GP told him that I don't have AS. He thought he would "call my bluff" by suggesting that maybe he should call my rheumy right then and there, and I said "yes, please!!!" Unfortunately he only got the secretary, but I'm really hoping that eventually they connect. Guess it doesn't matter since my hemo has dismissed me from his care now that he can't find anything. Probably for the better - most of my appointments were just trying to get the guy to believe anything that came out of my mouth. If I told him the sky was blue, he'd question it, I'm sure.

I have a referral to an internist now though, after breaking down, completely losing it, and flat out begging for it in the hemo's office... the waitlist is only a year there. lol I guess at least it's not 2 years, right?

Unfortunately things are going to get worse - my rheumy told me that when enbrel totally wore off, to call him, and we'd start remicade. I have insurance issues and won't be covered for any more meds until July, but I figured I could make it. I called to book that appointment, and apparently I can't get in until DECEMBER!!!! So no biologics for me until 2011!!!!n Not even a refill on what I'm taking now.

My GP has also told me there's nothing else he can do for me. Nice. My mom and Glen were both with me at that appointment. Can't believe I'm paying for him in a private clinic. Guess I won't be signing up for another year there. I just can't get over that he won't even help me find a specialist in the USA, or try to run any more tests. I've only just done basic stuff.

The health, doctor, medical system, and drug plan woes go on and on... I fall through the cracks at absolutely every turn these days. 100% of the time. Doctors always cancel, test appointments suddenly disappear, med plans conveniently find a way to drop me, wait lists are always a year long... it's kinda spooky. I'm applying for disability, but it looks pretty lame considering there's "nothing wrong" with me.

But enough of that - a bit of good news - my mom was able to fly out and see me for a couple of days, and actually escorted me to Vancouver for a night so that I could see my baby niece Mackenzie, who is 4 months old already! She's such a cutie. Only an hour flight away, and it's taken 4 months for me to get over there, just because I'm a wreck. That's pretty much why I've been away from KickAS the past few days - I've been sleeping for 2 days just recovering from trying to be "normal" on my trip. So sorry about that guys - wasn't expecting this. I don't realize just how hard it is to be "normal" until I'm actually trying to keep up to healthy people. Shouldn't be this messed up at 34 years old. I don't mean to doctor bash - I actually wanted to be one until my body gave out on me.

Anyway, thanks to you all for your thoughts. I'm really going to need you guys even more in the coming months. It could be rough.

Love you all.