I'm in another episode. I hate to call it a flare because I could (and hope to) wake up tomorrow morning and feel fine. But for the last week or so I have been feeling horrible.
I'm quite sure that it's the APS that is acting up again. My INR levels have not been therapeutic for a few weeks. First high and now low. Two visits to the ER. Two sets of blood tests and two CAT scans. One set of each for high levels and then on Saturday another set for low levels. Each time it was head pain that sent me to the ER. Also because I have yet to obtain a doctor. I do have an appointment on 10/2. Hopefully one of the physicians recommended by the the ER doc will see me this week.
What drives me crazy is that when I explain that I have APS (among my other crap) I get that look. That puppy dog head tilt thing. It's frustrating to get that look from a physician. Also, when my blood levels come back I am told that 2.2 is fine. Yup, fine for those with artificial valves but not those with APS. Again the puppy dog tilty thing.
So, this evening I scanned my medical records and found the printout from the coumadin center in NY. This printed listed all my visits, what my levels were and the daily dosages. I found a period on the printout that had the same basic levels I have now. I'll follow that dosage schedule for now.
I am so frustrated.
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9 comments:
praying for you
Deb
That is nasty, Lu Anne, and I just don't understand you have to wait more than 4 weeks for an appointment. Good luck getting your INR back up to 3.5 - if it is really low, you may need to give yourself a one-off bumper dose before going on the regime you found.
I have a heart condition and when I go every 2 months and they check my INR, they always say they like it in the 2.0 to 3.5 range - usually I'm 2.2 to 2.5 and they say it's great. Don't know how this affects or works with your APS, but they like me being lower than at the 3.5 range. Hope the Doctor you see next will be of help to you. Know it's not fun not feeling well dear. Arlene (AJ)
er docs can be real p-i-t-a's can't they? it's like they follow a script (much like a dell customer service person lol)! anyone who is outside the norm is screwed. :( will be thinking of you! =)
((((((((((gentle hugs dear))))))))))) I am praying for you.
loving you
karyl
I LIVE WITH LUPUS ALSO ALONG WITH FIBROMYALGIA, BIPOLAR DISORDER, SEVERE DEPRESSION, ARTHRITIS, ASTHAMA AND LOW IMMUNE DASEASE. I FEEL YOUR PAIN HUN I REALLY DO! IT'S TOUGH TO GET THROUGH EVERYDAY WHEN YOU LIVE IN PAIN AND FEAR EVERY SINGLE DAY OF YOUR LIFE! BUT I HAVE 3 KIDS 2 TEENS AND A 2 YR OLD TODDLER SO...... I HAVE TO TOUGH IT OUT FOR THEM!
HUGS
TRACY FISK
I am so sorry to hear that you are feeling so bad, and that your doctor is being so frustrating.
Lori
Praying for you..I have been working my way through an almost or so it seems forever flare up! I hate hearing that you are not well and pray it is over for you soon..hugs,TerryAnn
Oh Lu!!!! I was so afraid of this for you... it is hard when you relocate... I am praying... and sending you loving hugs!!!!
be well,
Dawn
http://journals.aol.com/princesssaurora/CarpeDiem/
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