heart breaking story, posting for a friend. can we help her ? please ?

[debra]

Dale,thank u. And you're right. I haven't had the chance to sit down and Realy talk to him yet. I joined at a busy time. He knows I'm sick,as I needed the ride thing and I sent him a few articles... But Realy need to sit down with him. I will ask Nancy,today as I'm sure she will call to see if I'm up to coming. The pastor did connect me with her,and I'm so happy he did. She loves to help so..... I know God is working here for me,so believe something good is coming,beside all the good so far that's come.. thank u Dale! You're lucky Dale that you're there! And not here! It's like the twilight zone up here! Ha ha..... Deb.

[annekat]

Pete,hi! Pete,thank u! I know huh? I'm trying Pete! Thank u guys,again... Should here soon about the anca,though I expect a negative for sure. These crazy lab results,just makes more frustration for me. As if I needed more! I love u guys.... Deb.

It really doesn't matter about the ANCA, in the long run. You can be negative and still have Wegs. We have seen it again and again. I was barely positive, but very sick. A good Wegs doc, like Dr. Monach, will not let a negative ANCA get in his way if all other signs point to Wegs. As for the other aspects of your blood results, you need a more experienced doc who understands why your blood needs different treatment and the results will otherwise be off.

[annekat]

Annekat, get back to work.
Dale

Dale, I'm eating breakfast at the moment. Can't do that and work at the same time.

[annekat]

Deb, did you say there were 2 ERs in Nashua but the ambulance would only take you to one? If someone can't take you to Boston, or there isn't time, maybe they could at least take you to the one you prefer and not the one you've had such bad experiences in.

[debra]

Anne hi! I totally agree here. U guys,if this can't wait and I go to er,up here of course,no choice,what do I do about the cat scan if they want to do this? Contrast is terrible for kidneys and I have had problems since 2012? Even without contrast is still not good for people with kidney issues. They won't even believe because of my blood work! There's something also in the upper left pole of my kidney that I haven't followed up on. This happened right away in 2012 when hell broke lose. It was found via ultrasound. No one mentions this either.... Even exrays scare me,cause that's where things got very strange for me. I'm may 2012 when this broke out I went to er and was in tachycardia,they did an exray of my lungs,and something very weird happened. I have some metal in my mouth,fillings ect. So what happened is when they put me back in the room thing,all of a sudden my eye felt weird,turned out to be scleritis,found out on emergency few days later,but my mouth and throat started burning like someone put a small fire in my mouth? Everything in my mouth turned bright red and burnt looking? This remained so painful for weeks while my gums completely changed,and teeth came lose,and started losing bone. Even my tongue was burnt. Why would this all happen? This was the start of losing my teeth gum and bone. Also my eye problems. I'm guessing the weg dog was looking for another stressor to come out? I asked them if something went wrong with the exray,they looked at me like I was crazy. Like they would tell me anyway! Isn't this weird? So now I'm terrified of even an exray! And I was trying to turn it down to begin with! Very weird huh? Deb. Apologizing for the typos that no dought r there...

[renidrag]

Anne, multitask. Seems everything went well yesterday at the Doctors? Anyone heard from vdub?
Dale

[annekat]

Anne, multitask. Seems everything went well yesterday at the Doctors? Anyone heard from vdub?
Dale

I WAS multitasking. Eating and typing at the same time. No clay on the keyboard, no clay in my food or in my mouth. Maybe some food on the keyboard, ha,ha. I'm now done with what I can do in clay for right now... waiting for things to dry so I can continue the process. Drinking some sugar-free cranberry juice and taking my vitamins. Things that have to get done.

No, haven't heard from vdub! We'd better check and see how he is doing!

Things seem OK at the doc's office. I have moderate inflammation level, kidneys and liver are fine, did better on respiratory function test, have gotten down to 10 pred, still have a slow-growing nodule in lung which appears to be cavitary and air-filled. Did not have me get another xray, as I seem fine, breathing better, not coughing up blood, etc. He said I'm a little anemic but I forgot to ask what to do about that. It couldn't have been a lot or he would have acted more concerned. Thanks for asking

[debra]

Anne! Hi! I Iove seeing you're beautiful face... Anne keep an eye on the anemia,cause it can make u even more tired. Lord knows we have enough with just this! Anemia,is one of my life long problems because of the thalacemmia. Do u like raisins? There high in iron. I heard of a lady that got her iron levels up with raisins,but get this,she used to soak them in vodka! Yikes! I don't like vodka,but wondering if the vodka helped her iron levels? Deb. Xo who isn't a big fan of rasins or vodka.....

[annekat]

Raisins are OK, not a big fan of them, either, but will eat them... there are bags of mixed dried fruits I can get that include raisins. I think the anemia must have been slight or he would have said more. It usually reads OK on my bloodwork. I'm not even sure which reading it is, though I do have a copy. Is it hemoglobin? If so, it reads 10.9 when normal is 12.0- 16.0. Hematocrit is even a bit more low. So, yeah, I could use a few more raisins, but I don't think it's a big deal. I've actually felt more energetic lately, overall. I'm not too worried about it, will look into it some more, though... thanks!

[debra]

Anne! Hi! Anne is there a ferritin on there? It's been so long since I studied this,but there's a special iron saturation test they do,that's more precise I guess. I should remember since I've dealt with this all; my life. But I didn't know about the thalacemmia until 2007 I think. Anyhoo,raisins can't hurt right? Or other dried fruit,as long as the vodka is left out? Funny,maybe there's something in the vodka that helps! ope you're taking time out for u Anne...... Love Deb.