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13 year old recently diagnosed
Well your wrong about me having it all together. I actually feel quite lost and just want to climb in a corner and cry. But, alas, as a mom I can't do that. I can only try to get the best treatment possible and minimize his pain as much as I can. So hard when its your only child and he is such a good kid. So hard when this is the year he has been looking forward to. 13! But as you all have, I just have to remain strong, hope for the best and never lose faith.
When you look back, you will realize how strong you were. Remember, as a caregiver, a mom, you are allowed all the emotions and fears you express. We speak of the "new normal" in this forum. It's that happy place where we are stable at some level, and hold that place for an extended period of time. In that time, people often think we don't look ill because we are thriving again, not fighting for life, ashen, plumped out with horrible drugs, dealing with IVs, hospitals, you name it. Enjoy those times with your son. He's going to have the normal growing up pains, the attitude (no doubt!), yet he still will have drugs to take, will have a level of maturity his peers may not achieve until they are in their late twenties or thirties! Someone else in this forum was described as a 60 year old woman in a 13 year old's body. Or maybe it was 16 year old's body. I'm trying to remember who it was. While your son didn't go through the ravaging effects some weggies have, he has had a pretty big burden put to him: hearing issues that aren't resolved. I lost hearing in my right ear to shingles, and understand how hearing loss isolates and changes your world. While I accept the loss and the limits medicine puts on ever improving hearing in that ear, surgically, because I am a weggie, I still wonder how many ENT doctors does it take to change a light bulb, because (of all specialists) I've had to work on getting over my sense that no number of ENT doctors is big enough to get the job done. But the sun comes up each day. There is lots of joy in living a life that came out of serious illness! And terrible things happen to us that aren't insurmountable, especially when we have the support of family and friends! (p.s. There are great ENT doctors out there, they just can't tell me what I want to hear. Also, great moms don't have to be Joan of Arc. You need to find your own support group, a task this forum is chartered to do! Weggies and their families, welcome here! For that matter, support group people who want to understand weggie issues better so they are better help for friends dealing with weggie issues are welcome, too.)
Last edited by Doug; 09-08-2009 at 05:42 PM.
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Doug said it perfectly! We know you must be struggling with the emotional aspects of this. We're just impressed that you're able to seek out better doctors, question the diagnosis and treatment, etc... at the same time! You'll look back on this time and wonder where and how you had the strength to get through it. So will your son.
Hang in there. Ask us for any help you need. Know that things will get better.
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Jeriorleans,
Sangye is really stong on the issue of getting to a WG Specialist and I wish I would have heard and listened to what she was saying a lot earlier. I have had 2 great doctors working with me but without being specalist they can only go so far with this BFF. I finally talked to my Docs about 2 weeks ago and they have been very helpful in calling the WG specialist in Birmingham and getting a referal so I can get to see the Specialist and the very earliest I could get a appointment was Oct. 7th.
If I can be of any help please let me know. I called the VF and I understand the closiest a WG Specialist to us (I live in Baton Rouge) is either Birmingham, Ala. are Jacksonville, Fla.
My heart goes out to your son and hopefully you can get this thing under control soon. It really seems to go extremely slow when you are begining the fight but don't be discouraged and always know that everyone here is behind you and always ready to help.
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I really learned the hard way about how it is not to have a Wegs specialist. I didn't know any better--didn't know they existed, didn't have a support group or even regular internet access. I just relied on my local rheumy and pulmonologist to refer me if necessary. BIG mistake. With a Wegs specialist at least consulting with them, I would be in far better shape, and probably would have avoided a lot of the complications and damage. So I'm determined to make sure every Weggie knows about Wegs specialists. Then at least they can make an informed decision.
Last edited by Sangye; 09-09-2009 at 01:48 PM.
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Sangye some people like me are hard headed and as I thought everything was under control until it started flaring up in other places. My lungs,
sinuses and ears were the only things involved for 18 months. It seems now that the tear ducts in my eyes are being effected and I really can't get any answers if it is my BFF are something else. I really feel that it is the WG's because the tear ducts are swollen and throbing. This has been going on very mildly for awhile but for the last 2 months it has gotten worse. I'm sure if I were seeing a specialist there would have already been some answers. I have gone to the eye doctor but he just seems to be lost and has just about let me diagnois (sp.) myself.
Thanks for the ragging.
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My head has been compared to concrete, so I get what you're saying....Originally Posted by Dumpy
You betcha. Thanks for not throwing your socks at me. I can't duck very fast these days...Thanks for the ragging.
Phil Berggquist had the same problem, if you recall. Unfortunately, he doesn't have internet at home anymore, and has to rely on his library for internet use. Yes, WG can affect the tear ducts and anything else. My doctor told me he starts from WG and works out from there, since I am a weggie, when dealing with issues I have. He establishes first it isn't WG before he looks at other possibilities, I guess, is a clearer way of writing it.
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Whenever I see my Wegs doc at JHU, I bring a list of all my current symptoms. He takes the list, and goes down it one by one out loud, all at once. It's so funny, because he says, "Mine, mine, mine, not mine--ENT, not mine--hematology, mine, mine, I have no idea, mine, not mine--neurology, etc...." All my specialists regard everything as "Wegs first" then rule that out. It has to be that way with a disease that is so far-reaching and has such unclear symptoms.
I think that's the main way non-Wegs docs make mistakes. They view everything as non-Wegs unless it's a textbook Wegs symptom-- eg, hemorrhaging lungs.
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One of the things I suffer from is Bronchiectasis which is often caused by a severe lung infection. This sounds very much like something that could be the result of Wegener's, but the Specialists say that it is not. Personaly, I think that it probably is although there are very few links that I can find. Perhaps I'm just very unlucky and have two severe illnesses.
I'm not sure that this post is relevant to the thread. I'm tired out and need to go to bed!
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