Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
You can be curious but I want to know Lilly's internet and computer situation first.
Phil Berggren, dx 2003
Well, All my awsome Weggie friends.....I went to the Dr. yesterday,,,, My rheumatologist. I flat out told his nurse the day before, that I was worried about my lungs, I was wheezing and my lungs sounded weird sometimes at nite, and I was afraid something may be going on. I was chocking sometimes when I swallowed, and I had just gotten over a bout with shingles. So.......after I took a breather, she quickly said I could come in the next day. So that was yesterday. CXR looks Totally clear!! No funny sounds in my chest. Yay!!!!! My doctor told me that that the way I describe the sounds my chest makes, it could easily be my throat~I should ask my EENT to look down my throat with a scope when I go for my post surg sinus checkup, and just ask him to look down as far as he can into my throat. See if there is anything that could make me have that wheezing off and on at night. Soooooo.......He is even thinking about not keep doing the rituxan every 6 months. He drew blood work yesterday, and depending on how that turns out, and the results from my EENT visit, he will decide. Well, it goes to show me that sometimes I become a bit of a coward before I push myself to the doctor, but I feel so much better now! I am going to continue my walking and good eating habits to lose some weaght, about 15 lbs. I have just been eating too much because I have been scared about my chest. Boy! That weight gets on Quick!!!!!! But I have already started waking and doing the olliptical machine. Its better for my "bionic" knee. (they seem to have about a 20 year life span, so I try to treat mine gently) But other than that......I am very fortunate for this good news. I pray that anyone that is afraid to get things checked out, go ahead and get it done! I am talking to myself too!!!!! Love yall!!! Thanks for every kind words and encouraging words, and tough words.....I need them ALL!!!!! I am a bit stubborn heehee! I will b in touch. I will be going back to my house tonite, but on the 22nd my Data minutes start over, so I will be back online on my phone. And I will b over here at Moms too so I can keep in touch. Thank you for the information on the "dialation" Phil. My Mom told me what that was. Is is painful (or should I say... is it very painful?) I may be looking at that when I go to my EENT about those weird sounds in my throat! I can defitately handle pain.
Well, bye for now all. I will be in touch soon, and as always, thank you for your support!
Life is a Gift~ Lilly
Hi Phil, I come to My Moms house and use her computer. I myself, Have an I phone 3. I have a data plan, so I can use it at home until I get close on my minutes going overl Then the phone company tell me im getting close, and if I go over, they give me more minutes,,,,,but charge me an extra $15. So I try not to do that ! lol But my family is keeping a eye and ear out for a computer for me. S0 it shouldnt be too long until I have SOMETHING!!! But since my Divorce, I do not own a credit card, I do not do "loans".....everything I have is MINE. It may not be a lot! But its all MINE!!! And I am blessed to have It! Thats just me. My X-husband kept us in the hole, and it stressed me out soooo much, that I dont care if I dont have all the new things coming outl I have exactly what I need! Thanks for letting me bend your ear !
Life is a Gift~ Lilly
Lily,glad to hear your x-ray came back good.You aren't supposed to see your ent for awhile yet right..I don't remember when you said. Maybe you can get the appt. pushed up if you tell them what's happening.
That would be nice if you didn't need to do the rtx, I figure the less you have to do the better.Take care and keep us posted when you can
Life isn't about how you survive the storm, but how to dance in the rain !
Good idea seeing the ENT, maybe sooner than later. But keep in mind the coughing could be a minor thing, now that your CXR came back clean. My coughing sounds awful lately, and I'm doing a lot of it, because my windpipe is aggravated by the colder weather, either damp or dry. It gets worse toward the end of the day. But I still think it's just stuff dripping down from my sinuses and collecting in my bronchii until I manage to cough it out of there. What I cough up is usually a very small amount and brings relief. This may or may not be the same scenario you have, there are so many scenarios in Wegs!
Anne, dx'ed April 2011
Hi Lilly, the dilations are not painful at all. A bit of discomfort after the procedures but nothing major at all. I'm glad to hear your family is trying to get you a computer and you can use your moms a lot as well. Keep us updated on your breathing. Does it ever seem tight to you? Like, do you get short of breath after going up stairs?
Phil Berggren, dx 2003
Hi Lily, I'm glad your chest is clear and you are getting better. I had a whistle when I was breathing a couple of weeks ago. It drove the pulm dr nuts until he figured it out. The back of my throat was swollen because of post nasal drip. This caused the uvula (sp?) the thing that hangs down the back of your throat to swell. So between my tonsils roots, the enlarged uvula, and irritated throat I had this whistle. His notes called it pharyngeal stenosis. The whistle is gone this week so I'm happy. Keep healing and I love your positive attitude.
Cindy
Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers
Cindy, some of my breathing stuff stumped my ENT, too. I may have had a whistle at times. I was having a lot of problems around my larynx/pharynx (forget which is which), and he couldn't understand why I sounded asthmatic when I breathed through my mouth but not when I breathed through my nose. It seemed simple enough to me; the air flowed differently over the area depending on the direction and route it was coming from. He did do a scope, and I think it was mainly just extra thick mucus all throughout the area. My voice was just awful during that time; I could barely talk. I haven't had any of that exact scenario since WG treatment, though the excess mucus still causes problems and I imagine it always will.
Anne, dx'ed April 2011
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