Mom of Wegeners patient for many years

[LillysMom]

m
Preferences

§
1
2
3
4
5
6
7
8
9
0
-
=
Backspace

Tab
q
w
e
r
t
y
u
i
o
p
[
]

Return



capslock
a
s
d
f
g
h
j
k
l
;
'
\

shift
`
z
x
c
v
b
n
m
,
.
/
shift


English


Deutsch


Español


Français


Italiano


Português


Русский




alt

alt





Preferences


Our daughter has had Wegeners since she was 24 years old. Until the Rutuxan infusion, it seems there has been only the standard steroid, bactrim, and chemo. I would love to see some other treatment come along that would enable more true remissions. The forum has helped our daughter to not feel so alone in her pain, surgeries, and feelings of vulnerability. Now we can get information together and share. After what she and I have been through with her surgeries (average 2 a year, and some minor ones in doctor offices in between), the end of her 20-year marriage due to his inability to deal with the life changes that go along with her disease, we are basically more like sisters than Mother and Daughter. We need to learn together and feel more informed.

I wonder if there are more parents out there who would identify with what it's like having a child with this disease. By 'child' I mean of any age . . . our daughter just turned 48.

Thanks for listening. Now I just have to learn how to work this site! LillysMom
Preferences

§
1
2
3
4
5
6
7
8
9
0
-
=
Backspace

Tab
q
w
e
r
t
y
u
i
o
p
[
]

Return



capslock
a
s
d
f
g
h
j
k
l
;
'
\

shift
`
z
x
c
v
b
n
m
,
.
/
shift


English


Deutsch


Español


Français


Italiano


Português


Русский




alt

alt





Preferences

[mishb]

Hi Lillys mum and welcome.

There are many parents of WG kids (young and old) on here - and my mum, lurks in the background reading as much as she can, and sympathizing with members on here. I am also 48, but still my mums kid :thumbsup:

I am so glad that you are there for Lilly, not just for her WG but for her other life journeys.

Thankyou for coming on and we welcome any information that you can share, and we will hopefully all learn new idea's together :hug3:

[Alysia]

Hi Lilly's mom.
It is awesome that you care so much for your daughter. I think that sometimes it is much more tough to be the caretaker then the sick one.
Michelle, you are very lucky with your mom. mine doesn't know exactly what I have and I don't want to burden her.

[Debbie C]

Hi Lily's mom, she is lucky to have you to want to learn more about this disease and to stand by her through all her struggles. She seems like a very strong woman to have gone through all she has and to have this disease for so long. Alot of us have just found out within the past few years or so. Please feel free to ask,vent or just chat about anything,there is usually someone on here 24-7 since this site is worldwide.

[annekat]

Welcome, Mom, and I'm very glad to meet you. If my own mother were alive I'm sure she would be reading the forum, too, and learning all she could about this disease. Lilly is lucky to have you, and I hope we will hear more of your thoughts and feelings and get to know you better. :smile1:

[windchime]

Welcome to the forum and ditto what everyone else has said. Lilly is very lucky to have such a warm and supportive partner/parent to go through all this with. There is a lot to learn on this site. So spend some time doing a little research it will further help you understand the disease.

[LillysMom]

Thanks so much for your support! Guess we are both teams with your mom and my daughter. It has helped her so much to talk with others and see she is not 'alone.' Generally WG patients don't meet people socially that have their same challenges. Most people say "She looks great," and don't understand at all. When asked how she is, I reply "good, she's doing good" and don't mention her last, and usually recent, surgery. There is no point. It can be very frustrating, as am sure you know. This site is going to help me too, and hopefully can lead to useful information.

LillysMom
Preferences

§
1
2
3
4
5
6
7
8
9
0
-
=
Backspace

Tab
q
w
e
r
t
y
u
i
o
p
[
]

Return



capslock
a
s
d
f
g
h
j
k
l
;
'
\

shift
`
z
x
c
v
b
n
m
,
.
/
shift


English


Deutsch


Español


Français


Italiano


Português


Русский




alt

alt





Preferences

[annekat]

Lilly's Mom, I so know what you mean, as do we all. Even my own family of siblings and probably all of my friends think I'm somehow "out of the woods" with this disease because I "seem fine", etc. They don't understand the unpredictability of it, how tired I get by the end of the day, why I hesitate to make plans..... the list goes on. I can tell them this stuff, and they will act like they get it, but then they will turn around and show that they do not understand. That is what is so refreshing about this forum. Everyone here gets it, no matter whether we are doing well or not, in remission or not, or still having issues but managing to function in life. I can certainly tell that YOU get it, and probably would even if Lilly was not having surgeries and such. She is lucky to have you.

[Lilly]

Thank u all so much for the kind words to my Mother. She is my best friend! She I ALWAYS there for me, and I feel guilty sometimes because of how much she has to do for me. I dont like to ask, but I have also gotten to realize that I cannot be dumb, and do something I shouldnt, like drive after taking strong pain meds, and she is always happy to help. We Are like sisters! She has spent the nite with me, I could write a book about the things we have done, how she has been there for me, how she has helped me and never complained about being there for me for every surgery since my husband left me. She also comes to many dr appts w me, I love it because she will remember something the doctor said that I may forget! We are a team! I love her so much. My Daddy is there for me too. He helps in different ways, like taking care of grandkids for mom if she is with me, and things like that. He is a Wonderful support, and there for me as we sometimes have long talks about my pain of divorce, and he has great advice. I am very fortunate, and I dont take it for granted. I try to "Pay it foward" to anyone I can because I know this disease can make you cry at nite, take your identity, make you feel sorry for yourself, but then feel guilty because others have it worse. Its a confusing, mean disease. But with friends like yall, I think Ill be OK!
:)

[whatthewhat]

Hi Lily, and Lily's Mom!

It's nice to hear about your partnership; thank you for writing. My daughter was diagnosed 10 months ago, when she was 14. I hope I can be a support to her, and that she feels like she can lean on me, for the next 30+ years!

[Alysia]

Happy birthday, Lilly's mom.
lots of health, peace and joy to you and to your family :hug3:

[mishb]

Happy Birthday Mom :hug3:

Today is the day that your daughter/s has to look after you.

Spoil her well Lilly :biggrin1:

[Lilly]

Hi Michelle and Alysia.....Oh My! How silly I feel.....I just saw the Birthday wishes to my Mom! I Read them to her. I cannot believe I did not see it before, but I am still learning how to use the site, and getting my laptop has helped my learn how to find posts written to us. Thank You and she Thanks yall too, We treated her very well!! We all pitched in and got her a Pandora Bracelet. We got her 3 charms (those little darn things are expensive!LOL, but are all sterling silver, as is the bracelet.) But worth it for her. We got her a charm that is a paint pallet and brush. The paint on the pallet are colored cubic zirconias, and sparkle really nice. And a White "Pandora" bead that is the original looking bead and had little cubic zirconia crystals in it, since her birthstone is diamond. And we got her a little watering can charm/bead with a precious enamel flower on it, since she gardens all the time! She really loves it. It was a special year because she turned 70. Thank yall again! Love yall ~~~ (next im gonna learn how to make all those smiley faces that move, and jump, like yall put on your posts. They are soooo cute! )