Instincts

Nothing feels better than having a doctor agree with you.

Had my GP appointment today and again, I am so lucky to have found her. She is wonderful, really trying to get some answers - and is very much on my side. She even says I look great, much better than when I first saw her last year. 

When I mentioned the dermatologist put me on Tetracycline, she said "No, you don't have to take it, it is a horrible medication." Done, awesome. No more TZ's for me. She gave me a prescription med for the
same results wanted but it is a topical cream. However, this is not covered by my current drug plan so full pop is very expensive and we'll have to see what we can do about that.

Again she wants me to increase the LBP (amitriptyline) dose - so I am considering that, but I do not want to balloon up, I know that shouldn't be a concern especially from where I am coming from - but it is a concern, I don't have the funds for new wardrobe if I do. 

She ordered new blood labs, full round of ANA's to see where that is now as the last ones did show possible remission for lupus however that could be false since it was shortly after the blood transfusion. 5-6 vials of blood vampired today, plus other samples had to be given.

Next will be starting the official path for MS testings. I wait for the call to go into the hospital for these rounds. 

Never ending, always a mystery - however hoping for more answers, even if they are non-answers. 


What it is is hard to determine, what it isn't is almost harder. "Are you there doc, it's me, Rhian.

One more tripped out even of the day, I drove home. My usual 3 mile walk round trip - I drove home. A real car. The drive was fine but due to the pain it was hard since the pain in my legs and feet is so bad that I had a hard time feeling the gas pedal - I sometimes had to physically look at where my foot was. Interesting, and much better than before since I never thought I could drive again, this was quite the big accomplishment!

Rebel

Rules? Who needs them. I've never been a good one to follow rules, however this being so sick crap I might have to be.  My natural instincts is to do the opposite of what I'm told. I'm not a brat, or an asshole, but I don't like being told what to do. I am my mother's daughter for sure and that's why we tend to get into trouble whenever we are together. It's the only life I know.

I got my Immunosuppresants tonight, and the booklet on the rules should be a novel. This will be hard. The pills are huge too, and if I do have to take them with me anywhere the bottle won't fit in my little red purse. Yes I know I have pill separators, and smaller containers but it's the principle.

The rules:

• If in sun, highest sunscreen/hats/sunglasses 
• but don't be in the sun.
• Empty stomach, 2 pills twice a day
• Do not lie down for 10 minutes after taking the pills.
• Don't take it at bedtime
• Nothing containing magnesium, 2-3 hours before or after
• No Calcium 2-3 hours before or after taking the pills
• No antacids, buffered tablets, vitamins, minerals.
• No dairy, or zinc.
• No iron (This is the big one since I need iron to you know, keep alive).
• No aluminum - yes including applying deodorant 2-3 hours before or after taking the pills. 
• No juice

I will really need to track everything that I do.

Tomorrow I start in the adventures of immunosuppresants. If you have a cold or a flu, I love you but please stay away.

World Lupus Day - May 10th, 2011

In addition to the severe pain that changes lives. This is real, and can be fatal. We need attention and awareness. We need hope.

Image reblogged from http://whatthejules.tumblr.com/