Thursday, October 28, 2010

Which do you want..?

Good news or bad news first?

Tuesday I saw my GP and let me just say how lucky I am to have found her. 
She is as far as I can tell, wonderful, thorough and is thinking outside the box.

Good news - yes, it is in fact lupus. (duh) Still a struggle to get new doctors on board, you hear this Dr. House? 

Bad news - it's also possibly MS on top of lupus, fibro and RA. Not much a surprise, since these autoimmune monsters travel in packs. 

She's upped my lbp (little blue pill) which is Amitriptyline from 10 mgs to 25 mgs /night. She agreed with me that the other pills other doctors keep trying to push on me is too dangerous for me - namely the MTX and the plaquinel. There is a possibility she will put me on Celebrex, but she offered to try 3 ibprofins a day, however I do have an allergy or intolerance to it. So less of many evils perhaps.

The real heavy news now.

She has ordered new tests for me - Peripheral Arterial and Ankle Brachial Pressure tests, which I will have at the same centre that I had the radiation. 

The third test is the scary one - the DVT on both legs. This cannot be done at the same time as the other, and is actually urgent. The centre says that I have to call at 7:30 am everyday to see if they can take me  - however transportation is not so easy since I am so dependant on others, and they of course work. Public transportation is not an option.

This centre told me that if I can't get in,  to please go the the ER - asap. 
I have called my GP again and am waiting for anything she can advise me to do, with the many challenges that I have. 

Since I can't drive myself, I do not have my car anymore. It's so hard to depend on people, and I am so grateful for the time they do take off to help me. 

My feet do turn blue and go from blue grey to red with white spots. I know my blood is messed up - since I am not producing many of my own cells, and since I had the transfusion. 

There is something severe that is wrong, but this urgent, and telling me I have 48 hours to get tested, with the other voice at the end of the phone saying she begs me to to the ER asap, is scary. 

I'm very overwhelmed and sicker than even I thought. And that is not so good at all. 

Will try to update as I know things, currently just a waiting game right now. Waiting means thoughts in my head, and this also means I am beating myself up over it. 

Thank you for your wishes, thoughts and words. Every little bit means so much, and is treasured.


  1. Rhi... call an ambulance tomorrow please. I know it'll be shit but take a book and get it all over with. I know I'm not one to talk but thats really what I think u should do.

    I'd come over and drive u but my car can't swim :-(

  2. Oh my goodness, love. Get there as soon as you can. Is a taxi an option? Or ambulance? Something, you need to get it done, babygirl.

    Much love from our household to yours. We'd be there to help you physically if we could :(

  3. Much love, sweetness. I know how scary everything is but you do need to get the tests done. Knowing is much better than not knowing. You have people to support you emotionally even if we can't be there for you physically.

  4. The lack of support there, such as paratransit, may never cease to amaze me.
    It may be worth calling around to see if anyone runs a stretcher taxi service. Tho cost might be an issue with that.

    *offers a gentle hug*
    well, at least the new Dr found something so she isn't thinking it is 'all in your head' but damn... I wish it hadn't been so scary sounding.

  5. I loves you Rhian and please do call anyone, even if it is an ambulance to get these tests done. You need to do it <3