Hi, I am Lilly. 23 years with Wegener Dz

[Lilly]

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This is my first time being in a support group. I hope I can learn how to use this site to help me learn more about my disease. I have had Wegeners for 23 years, so you would think I would know plenty. I know about having lots of surgeries, that Wegeners is a dz that likes to eat your cartlidge and take away a lot of your stamina, and leaves permanent damage to places like "your face" (saddle nose) and sometimes helps you lose your identity. It will keep you from doing some things your friends can still do. But I have also learned that you have to have a good attitude about these things and not let the disease define WHO you are, and also, so many have it much worse. I wrote an introduction to who I thought was the person with whom I joined a group with only one member when I first registered today. But then the site said I wrote it to myself! HaHa! So here it is below.

I am a new member and am just learning about this support group. I am not sure if my biography will be in the realm of what you are interested in, but I thought I would just say "hi" and if we can help one another, all the better! I had bilateral eye and total sinus scraping and cleaning surgery 3 days ago, Dec. 24. I am still recovering, and in much pain, but it is nice to have my sinuses cleared and maybe my eyes will not tear constantly for awhile. I have had several of these surgeries. I joke that I am just like an older car, you just have to fix what breaks, and keep it running! So far, so good! I have been very blessed! I hope you are doing well. Lilly :smile1:

[windchime]

Welcome Lilly, Sounds like you're in a rough spot right now. I'm happy you found us. There is much information on this forum and many knowledgeable people ready to share. Since this is a global community there is always someone around to talk to if you just need to vent your frustrations. I hope you feel better in the coming days and that your surgery ultimately turns out to be a success. Keep us posted on your recovery and when you can please share a little more information on when and how you found out you had wegs. Feel Better :smile1:

[Debbie C]

Welcome to our group Lilly. Since you've had this disease so long, I'm sure there is alot we can learn from you.Sorry to hear you had to have the surgery right before the holidays. Hope you feel better for the New Year.There are people on here from all over the world so if you ever want to talk to someone or to vent ,there is usually someone here. I look forward to hear more of your experience.

[annekat]

Nice to meet you, Lilly, and welcome to the forum. You will feel a lot less alone by getting acquainted with all of us here who also have Wegeners. We are interested in everyone's story, since each one is a little different, which keeps it interesting. And we can all learn a lot from each other, especially from one who has had it as long as you have. I hope you recover easily and quickly from the surgery and enjoy your newly cleaned up sinuses. We would love to hear more about your history with Wegeners and how you are doing these days.

[Lilly]

Thank u all for your encouragement. I feel like I have found the place here where I can help people and they can help me! I am looking foward to getting to know you better and share anything wants to know about my 23 years with wegeners. I have trouble sleeping, but am going to try to get a little, so I will b in touch. Goodnite. :)

[vdub]

You found the right place, Lily!! Check back in when you wake up and tell us about yourself.

[mishb]

Hi Lilly and welcome to the forum.

Wow, 23 years - great effort.

I look forward to hearing of your WG journey

[drz]

You found the right place, Lily!! Check back in when you wake up and tell us about yourself.

Her profile has some biography info and pix of her. Thanks, Lilly for joining us and welcome to our international forum.

[Lilly]

Hi Everyone. I am overwhelmed by the warm welcome! I feel like I just received a new "family". It will be really nice to talk about how I feel to people who know and understand! For instance....No one, I mean No one I try to explain that I have to take a little nap each day if possible, because if I stop doing what I am doing, I will pretty much fall asleep instantly! They say they COMPLETELY understand. But then when I say I am too tired to go on an all day excursion, they act like I am lazy and just using an excuse not to go. :( Its difficult to not be able to "Plan" many things that someone will be depending on you to be there and do what you promised. I have to wake up and see how I feel before I know what my day will be like. I can PUSH myself if need be, and do something for a full day, but then I will usually CRASH for a couple days to make up for it. Dont get me wrong, I am not ALWAYS so tired. Some days I wake up feeling like cleaning my whole house! Or work in the yard! I Love those days, and use them to their fullest. I feel so fortunate to celebrate each Birthday! I am 48!! So Very Blessed to be here. In 2010, my 20 year marriage was over. I was completely Blindsided! I had NO idea my husband wanted a divorce. I think that one thing was his midlife crisis. Another, I was beginning to have problems with my knee, and had gone through 2 arthroscopic surgeries for floating cartlidge from years of "Stand Up" Jet Skiing.....which uses your knees as total balance and turning the ski. After those 2 surgeries, my knee began to fall apart and eat itself. We lived in Tuscaloosa, Al. So the doctors were athletic doctors, working on the football players of the Crimson Tide.....So I stumped them. The Dr did a total ACL replacement. 2 weeks later, I was back. MRI showed the new ACL was detached and just floating around. The Dr. said he would not touch my knee again. My husband was getting a bit tired of the surgeries, dr appts, and Me not being able to do the things I used to do and on pain meds, etc. He could not handle it. After being my best friend and a pretty good support system for me, he just gave up. So I moved to Mobile, Al and moved in with my parents. Then went to UAB in Birmingham and had a total knee replacement. It has been doing great ever since. I am now on disability because I have a lot of surgeries, and cannot really be depended on, and I am on strong narcotic meds for my face, since my sinuses are gone, my nose twice rebuilt, and tubes in eyes and ears many times. Needless to say, my income is small and I have not been able to get a computer. I am using my Mothers since I am here recuperating from my last surgery. I have an I Phone I got for .99 cents when my phone company went to the new I Phones. I have a Data Plan but it is limited. So I am not going to be able to be freely writing like I would like to until I get a computer, which I am working on. And I just got a part time job, 20 hrs a wk. I sit and do insurance checking for an eye Dr. I am hoping to get my budget rearranged and cut some unnecessary bills (????) not sure which ones those are! lol But I live close to my parents and will be writing each time I visit, plus, I will be checking on my phone. I just cant a lot. I am so ready to talk to some of you already! This will surely encourage me to really get creative in ways to make money to get my laptop and data plan that will let me keep in touch with you all. My Mother is probably going to register on here, she is my major caregiver when I have surgeries, or just bad days. She is very interested in others with Wegeners, and this seems to be the place! I should be here for a few hours. I hope I did not bore yall too much. This is just where I am now, and a tiny bit of background. So I will have to be patient (no pun intended) to be able to be in touch as much as I want. But I still appreciate what I have. Thats about it for now I guess. One more thing........I came across a quote this morning on FB and it seemed so perfect for me, and maybe for some of you. Some may already have heard it, but it was right up my ally......
Dear God, I did not sleep well last night, but I did wake up. My muscles are sore, but they work. My wallet is not full, but my belly is. I may not have all I want, but I have all I need. My Life is not perfect, but my life is GOOD. Thank you.
Bye Yall! Ill be talking to yall soon! Lilly

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[annekat]

Lilly, this is a very loving group of people, and I think we love you already! No, nothing you wrote is boring. We are here for you, whenever you are able to write. I am also on disability but must scrounge for other income, since it isn't enough, so I know something of what you are going through. I have a laptop but it is old and I don't know when it might crash. A friend just gave me a newer netbook, like a small laptop, that he wasn't using and said he couldn't get a lot for, and for some reason it has no operating system installed. So I will have to work on that, so I'll have some backup in case this one malfunctions. But you might look around.... technology is updated so fast that there are always older units floating around that are still in working condition. You really scored on that iPhone! I would love to have one of those, even an older one. Here in my town we have a place run by volunteers that fixes up old computers for people and helps them with any technical problems, probably for a small fee but not a lot.... maybe there is someplace like that near where you live. Having a computer savvy friend would help a lot, too. Good luck! BTW, in case you were wondering, I'm 61 years old but still feel about 48.

[Alysia]

Hi Lily,
welcome to our weggie family. I feel that my weggie family here understand me more deeply then my family. sometimes only others who are going through same things, know how it feels like.
23 years with wg is impressing. and giving hope :thumbup:
please continue to write.

[woz]

Hi Lily, sounds like you have had one hell of a journey, good to see that you have a strong attitude, and 23 years, now that is really impressive. I have only had this for 1 year, a lot of people think I am a little lazy some of the time, but the energy isn't always there. I hope you can keep in contact with this group, as they are a great source of information, and support, all the best.

Regards woz.

We'll be friends, till we are old and senile.....then we will be new friends.

[Debbie C]

Welcome back Lily, You have been though alot the past 20 years. Sorry to hear about your marriage,I know that must have been hard,especially being ill. My husband and I divorced after 16 yrs but we remained best friends afterwards until he died.BUT on another note great to hear your knee replacement is doing good so far. Also if there is a library around you they always have computers you can use ( or you can be like Phil on here and get admitted to the hosp. and use there's !!! )Hope to hear back from you soon and that you and everyone have a Healthy, Happy New Year !!!!

[annekat]

Lilly, I hope a cheap or donated, yet more than halfway decent, used or new computer will come your way. I have seen some inexpensive netbooks and tablets advertised at Big Lots, if you have that where you are.... and I have heard of people being happy with what they've bought there. It can be very tough without any kind of computer these days. I know because I've had them break down in the past. If you have to use the library, I hope the lines are shorter than they are here! Just based on what I've heard. Good luck!

[Debbie C]

Anne ,I don't know about where you live but the Big Lots here are closing. I went yesterday for the going out of business sale and the shelves were almost empty. Unfortunaty I still managed to spend way to much money on crap I didn't even need.

[annekat]

Anne ,I don't know about where you live but the Big Lots here are closing. I went yesterday for the going out of business sale and the shelves were almost empty. Unfortunaty I still managed to spend way to much money on crap I didn't even need. Well, here, the Big Lots store I went to did close, but it moved to a much bigger location elsewhere in town, which I haven't visited yet. So I gather by that they have done well and aren't in danger of going out of business. I don't know how it might be elsewhere. I don't spend much there because I don't have much to spend, and didn't get in on the liquidation at the old store. But I have picked up some good deals on gardening accessories and other kinds of tools, as well as clothing such as sweatshirts. They also seem to have good kitchen and houseware stuff. You might check to make sure yours didn't just move.

[Lilly]

Thank u for the idea! I am lookingat many different ways to obtain some sort of computer I can afford and also afford to use. I have 3 wonderful sisters whom are helping me also. One sister knows a guy here in Mobile, Alabama who works and builds computers. He sometimes gives one to people who cannot afford one, so my sister is looking into that. It would not b a laptop, but it would certainly serve the purpose and b a Blessing! The Lord always takes care of me in his time, so I trust him with everything, even a computer! :) Thank u so much and I'll b talking to u soon!

[annekat]

That guy sounds like a good resource, and it's likely that he has more old computers than he knows what to do with. A desktop would be fine... you have Wegs, you need to stay home a lot, anyway! He probably has old monitors and keyboards and mice, too, that work.