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Lilly
02-04-2014, 02:57 PM
I have an issue that basically took me by suprise, and I just wonder if anyone else out there has a similar situation? I was diagnosed with Wegeners Dz. April, 1990. I was married in September of the same year. My husband was my rock, always there for me. Of course as time goes on, the disease changes, medical bills are expensive. Insurance is expensive. Dr visits, surgeries, CT scans, bloodwork, etc. get old. Its pretty much always something, sometimes there are some months that go by with no issues, then POW.....Flare Up!!! Well in 2010, my husband turned 49, he started having his midlife crisis. He was so sick of my disease, that he just couldnt take it. But he didnt tell me. My knee was literally falling apart after 3 arthoscopic surgeries and a total ACL replacement by a top surgeon in Tuscaloosa Al, who is the dr to the University of Alabama Football team. So when my ACL detached, the Dr just kind of freaked out, and so did my husband! It was the beginning of the end of my marriage. I just thought we would go to Birmingham and get my knee replacement, Me and my Husband by my side, not happy about it, but he would go through the motions. Well, Things did not happen that way. The details are still excruiciating for me to think about, but in a nutshell, he said he just was sick of all the disease issues, and could not take it. It had taken its toll on our 19 yr marriage, and he was unsure about his feelings for me. We took a 3 month "time" away from each other, I got a total knee replacement.....He got time to think, and continue his midlife crisis, and I begged him to let us get some counseling, but he was just not ready. I moved in with my parents in Mobile, 4 hrs from him. I thing I was in shock for a year!!!! I really could not believe the man I thought I was going to grow old with was gone......So as time went by, the disease and I were taken wonderful loving care of by my family. They watched me as I went through the divorce, as some of you know, can be like a death of your spouse. I felt like my entire life was ripped away from me because of this stupid disease! I was trying to stay busy, my sisters were here for me. My parents were helping me get back on my feet. Then my Mom saw that I really needed some of my own space. I needed a place of my own. So she helped me get an apt while I was trying to get my disability. I had a little old poodle I found 1 week before I left Tuscaloosa to move to Mobile, and he was my best friend. We were Buddies. He was about 12, and couldnt hear. He was very dependent on me. But I really needed that. I had taken care of a husband and stepdaughter for years, and suddenly.......that was gone. I feel the Lord put me and my Buddy, Who I named Bo, to help me through the time of transition of suddenly losing everything. We had each other! He was soooo cute, and loved me so much. I would be in the kitchen, and I would feel his little wet nose on the back of my calf, letting me know he was there, so I wouldn't trip on him. When the apt lease was up, I moved back in with my parents and decided that I would fix up a little rental house my dad had, and move in there. I could afford it, and I would have my own little house! My money would be going toward a purchase and not an apt rent. So thats exactly what I did. I had the attic totally emptied out and re insulated. I removed all the interior doors and bought new ones, new door knobs, new paint in the whole interior, new carpet, new windows! So Bo and I moved into our new little house. It was close to my parents, and my sisters. Ive been there about a year and half. Bo passed away about 5 months ago, and so now its just me. Well, I have never been so depressed! I dont want another pet right now, because of the expense and if I want to go somewhere, I have to make sure I do not stay away too long. But instead of putting the finishing touches on my house, that I was so excited to do......I just cant get started, and when I do, I lose interest, and start something else and around and around it goes! I wake up in the mornings crying! I mean, exactly that! I wake up and I am crying and drag myself out of bed and lay on the couch, sometimes go back to sleep. I do have good days. It seems about half and half. I swear, I just stay depressed, and just have a few good days! I am a good housekeeper, and my house is not dirty or messy, but I just have not unpacked all my boxes, set up my easel and painting items, so I can paint. Get my jewelry items out, and start creating again. Is there anyone else out there that are in a similar situation? I dont go out with friends, I feel like I am only Half Living. Half the time, I am doing what I need to do to be a good person in society, I get things done that I have to do, and participate in Church, family events, etc. Then other times, Im just a weekend recluse, living in my pajamas, eating food that makes me gain weight, and I just cant get control of my life! I know I try so hard to say, Today is the day! Then after 2 or 3 days, Im back in the hole. The depressed hole. I sleep for hours, days sometimes. Is there anyone out there who has this disease, lives alone, is in their late 40"s and is able to live a relatively happy life and feel like you are where you want to be in your life? Hmmmm.....after writing this, maybe I should write a book! :) (Andrew is probably saying "you already have! on this website!" Well, I love all you fellow weggies. I hope I have connected with someone out there. I am open to constructive critisism, ideas, other peoples stories. :)

carriej22
02-04-2014, 03:30 PM
I really think you should go speak to someone who specializes in mental health, as I think that would really help you to get yourself out of this hole.

It sounds to me like you feel like you have nothing to live for and just go through the motions... You need to find a hobby, or a person, or a job, or something that you're passionate enough about to keep you going.

pberggren1
02-04-2014, 03:40 PM
That was very well put Lilly. I live with my parents but do feel the way you describe from time to time.

There are many days where I don't even leave the house. Sometimes I won't go out Thursday, Friday, Saturday and Sunday. This is mostly not from depression usually but more from not having enough energy and breathing issues as well. As the months go on now this feeling and situation just gets worse and worse.

Lilly, how are you energy wise? Do you have enough energy each day to do all the chores and walk your dog, etc? How is your breathing?

I think going to a counselor is not a bad idea for you. You have recently gone through very traumatic events that are life changing. When I get depressed or when I just stay at home because I am not feeling well, I also will eat junk food and lounge around. I think a lot of us are guilty of that.

I wish you lived close to me then I would come over often for visits. I think that would boost both of us up. And who knows, maybe we might fall in love and get married. Just because you are in your 40s and not in top health does not mean that someone will not again fall in love with you and marry you. I still have hope that I will get married.

NikkiNicole
02-04-2014, 04:10 PM
While not in the same exact situation, I understand where you are coming from. I just turned 34, I have been married for just about 4 years. I got sick and then got worse starting two years into our marriage. I feel this deep rooted fear because of being sick. I haven't yet reached remission, I haven't been able to return to the life we had before all this began.

Will he tire of it as your husband did? Does he wish he had someone who wasn't broken? I mean, if I am already broken at 34, isn't it only going to get worse?

My dog and two cats are my best friends. I do have friends, yes, even best friends. But, nothing compares to the true unconditional love from my pets. I would be absolutely devastated without them right now.

I also believe that talking with someone would help you. Phil is absolutely right. We are not too old and busted to find new loves and begin new chapters in our lives. I know that you can get through this. I know you will have happy days ahead of you.

Sending you hugs and a smile.

annekat
02-04-2014, 06:33 PM
I live alone and have for a long time, so I'm used to it. I have three cats. But I have some of the same issues as you do, sometimes waking up depressed, leaving boxes unpacked for a long time, having days where I don't do much of anything. I also have artistic pursuits, as a maker of pottery, which I sell at a local farmers market to supplement my disability income. It can be hard to stay focused on that if things are bothering me. I'm not sure how similar our situations are. I haven't been through the pain of divorce, having never been married. But I could probably use some mental health counseling, too. At my age, 61, I think I could meet someone to possibly marry. There are a lot of old single codgers around; however, I'm pretty picky. But I think it might even be easier than if I was younger, since then a potential mate would see the WG as something to interfere with a normal life, whereas at my age, a lot of the codgers will have some health problems too and/or already have lived a full life, had families or fulfilling careers, and are now retired and living out their "golden years" the best they know how, which could include taking up with someone like me. I'm really just ruminating here and will probably let all this sink in, read your post again, read responses from others, and see if I have anything else to add later.

windchime
02-05-2014, 12:30 AM
Lilly, I agree with everyone else some counseling might be in order. I've had major depression on and off for years. When it gets so bad that I have anger issues I know it's time to get medication. That is probably letting it go too far and I should, no doubt, be on meds all the time, but I don't want to. With that being said the meds have been good for me when I've taken them. In addition, I see or did see (lack of money did get in the way), a therapist. That also helped a great deal. When you talk to a therapist it's all about you and sometimes we need that. I hope to resume my therapy visits later this month. I ended up having to stop right when all this stuff was going down in Nov/Dec. I miss my talks with her. I would suggest first talking to your PCP about depression and getting a diagnosis and taking it from there. Thank you for sharing your story.

LillysMom
02-05-2014, 01:40 AM
Thank you all for the advice you gave Lilly. She has been struggling with this, and we as a family try our best to keep her busy! :) I feel like just reading all of your different, yet similar situations, she will eventually pick up her painting soon, which is something we both do. And she is very into nature, and her jewelry making shows it.....I'm hoping she picks up on that again. She is very proud of her little house, but finds it difficult to get started on any projects because of her being tired......you all know about that! Thank u all again, u are always in my thoughts and prayers.

Lilly
02-05-2014, 02:10 AM
Nikki, I appreciate your reply to my lengthy story! Not all men are like my husband. We had a fun and great marriage, but he was selfish, and it was always "all about him". We were very active, and went out of town to concerts, and roadtrips on our Motorcycle, etc. I LOVED those times, and when my knee started getting in the way, I just put up with the pain, so I could continue on with my life. When it got to the point that I couldnt go anything else until my knee got fixed, he pretty much said I couldnt keep up with him, and since I couldnt drink alchohol in excess to "party" equally with him, his selfish side came out, and he did not want to understand my dz anymore. His selfishness came out and all he thought about was himself. He should have been with me at night when I got home from work sitting on the couch, rubbing my knee, watching tv with me, and just showing me he was sad I was hurting. But instead he went down to the basement, drank beer, played on the pool table, got in the hot tub, .....he would come upstairs and say...come down with me instead of sitting there feeling sorry for yourself. I say all this, to say that your husband may be the sweet kind that wants to be there for you, wants you to let him into your life, and you will not feel so broken. I feel broken too, and I have lots of opportunities to go out, listen to live music, (which I Love to do), but I dont go because I know I will b ready to leave early, and I cant drive myself at night because of my pain meds. Vicious cycle!!!!! But if your husband wants to b a part of your life, disease and all, let him in. Your original dreams may have changed, but there are new ones that you can make with him. And I feel like you will go into a remission sooner or later. Also, I read your blog. I left a msg. but it disappeared and I dont think you got it. I have been wanting to start a blog but dont know how, and I suppose I need a computer first!! lol Take care....Blessings, and thank you for your advice......hugs to you <3

Lilly
02-05-2014, 02:17 AM
Cindy, you are right, counseling has really helped me in the past, and I have thought about getting back into seeing someone at least 2 times a month. Just to help me stay on track. Its amazing what someone telling you what you know you need to do will help you!! Thank u so much for your advice. I so appreciate it. I know how you feel having to stop going, lack of money, etc. It is so difficult, you just want to give up! But we have to keep on going! By the way.....I love your "before" pic! And I love the eyeshadow!!!! You look so pretty!!! Thank you so much for helping me.......Blessings and hugs <3

Lilly
02-05-2014, 02:22 AM
Anne, I love your sense of humor about the age and finding a husband or boyfriend! So funny!!! We do have similar issues about just having a lack of energy for doing things we want. Then we feel guilty! Arrrrgggghhhh!!!! Thank you for sharing, Its good to know there is someone else out there that does have the same issues about getting things done, and having artistic pursuits........I really feel like if I could do my painting, I would feel like I was accomplishing something!!! Thank you! Blessings!
Talk to you soon :)

Lilly
02-05-2014, 02:31 AM
Hi Phil, Thanks for writing me. I love your outlook on things, of "What could be", and "what if" I like that~ As far as my energy level, some days im just lay around with no energy, then some days I have a lot of energy, but after a half a day doing anything, if I sit down, Ill fall asleep without even realizing it! I am not going to the dr today, the office called yesterday and rescheduled it until Friday. I spent the nite with my parents last nite so that is why I have gotten to write so much to everyone. So If I seem to have left the site.......its just because Im at home and cant use all my minutes on my phone getting on the site. But I can get on there and read yalls posts, so I want to know how your dr appt goes about your breathing. Mine is difficult sometimes, I feel like I cant get a deep breath. So Friday, I told my EENT's nurse that after he checks my post op eyes and nose, I want him to look into my throat and see if I am having any issues with my throat narrowing. I will let you know! Thank you for sharing , I enjoy your posts, and pray for you because you have a lot going on right now, and are still so concerened for others. You are a Jem. Take care, Blessings and hugs.

Lilly
02-05-2014, 02:37 AM
Thank you Carrie. I do have a small part time job 4 days a week, appx 20 hrs. I sit and verify insurance. My sister works there, its an eye dr. So we have fun. She can tell when I am going downhill, and tells me "Sis, time for u to go, u still have to drive home!" So I do have that. You are so right.....I am passionate about painting and creating jewelry. I have everything I need to do both, I just have not unpacked the boxes!!!!! Because of all of your advice and just listening to my story, I already feel like going home and getting started! Thank you so much! You look beautiful! Take care~

Pete
02-05-2014, 02:40 AM
The boxes can get unpacked one at a time. Glad to see you have the energy and motivation to start.

Lilly
02-05-2014, 02:44 AM
I cannot wait to get a computer so i can talk to all of you every day!!!!i miss my friends and can only talk when i am at my parents. Please dont think i am ignoring anyone. It wont be long! I am going to get a computer soon!!!!!! Love all of you!!!!!!

LillysMom
02-05-2014, 03:00 AM
Everyone has a different story, but each of y'all have some things in common that help each other know you are not alone in your challenges. This is good . . your stories help me as a Mom . . . and I am so thankful for them.
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renidrag
02-05-2014, 04:05 AM
I too have had periods of depression from time to time. I take medication for anxiety but not everyday and sometimes not every week. You have your painting and I had my guitar. I haven't touched it in six years or so. I am so afraid my fingers will cramp up like they do with my plumbing tools. I used to sing also and with COPD it would be very difficult. I'll make a deal with you. You get your easel and oils ready and I will get the guitar and picks out, maybe we will both feel better about ourselves soon.

Alysia
02-05-2014, 04:15 AM
Dear Lilly,
you touched my heart with your story. thanks for sharing.
you are a charming loveble lady and you can find a boy friend. your husband lose you and not vice versa.
no wonder that you are depressed. you just lost Bo and your marriage. and being a weggie is very depressing :crying:

I feel depleted of energy most of the time, sometimes I have pains, I feel that my health is detriorating over the years. it is scary and depressing. my husband doesn't understand. he can't. neither my friends or family. only one who feel it, can know what I feel, like my friends here. this forum is a life saving for me, mentally.
I am also going to psychologist, since 1990. the last year I am going twice a week. less the once a week is not enough.

I think that you should take a cat to take care of. it is not very demanding, and it is fun. you will have someone to talk to, to snugle with and to laugh at. cats are great pets.
I am sending to you lots of hugs. I am glad that you are here with us. please continue to write.

Alysia
02-05-2014, 04:17 AM
p.s. I will be delighted to see your art works. here or/and at fb.

annekat
02-05-2014, 05:04 AM
I too have had periods of depression from time to time. I take medication for anxiety but not everyday and sometimes not every week. You have your painting and I had my guitar. I haven't touched it in six years or so. I am so afraid my fingers will cramp up like they do with my plumbing tools. I used to sing also and with COPD it would be very difficult. I'll make a deal with you. You get your easel and oils ready and I will get the guitar and picks out, maybe we will both feel better about ourselves soon. Dale, I've gotten the hand cramping from time to time. It is usually when doing an activity I haven't done for awhile or maybe even a few days. I have found if I just persevere and try to ignore it, it goes away and then the next day may not happen at all. I would hope that could be the case with you and your guitar, though I know everyone is different and we all have varying degrees of these problems. I hope Lilly takes you up on that deal!

windchime
02-05-2014, 08:27 AM
Lilly, I'm also one who hates unpacking. When I move it takes me forever to get things unpacked. I mean months and months. Amazingly the stuff doesn't go away, it sits there and makes me feel guilty. Oh well. I just don't like doing it. I do need a hobby though. I'm drawn to painting but have no clue where to start. Any suggestions, anyone?

NikkiNicole
02-05-2014, 08:33 AM
Lilly, there is a website I do most of my gift shopping from. It's called Etsy.com Everything on the site is either handmade, or vintage refinished. There is a LOT of jewelry on there. Perhaps, you could start making jewelry and sell it. Make some Wegener's Awareness stuff in Red and Black. (myfavorite colors!)
I know I would buy your stuff, I know lots of people who love handmade jewelry!!!
It's just an idea. I was trying to think of ways for you to love what you love even more.

Lilly
02-05-2014, 02:22 PM
Ok, u have a deal! It's been 3 years since I've painted. It is a real stress reliever, as I'm sure your guitar playing is for u. I know u have to get those callouses back on your fingers and get ur hands back in shape, but u really need to pick that guitar back up! I'll let u know how I'm doing getting my easel and paints out and organized.....you better get some new strings and get ur guitar tuned up! :)

Lilly
02-05-2014, 02:32 PM
That is a really great idea! I'm familiar with the etsy site, me and 2 of my sisters had a site on there a couple years ago called "Bloomin' Fancy Sisters" and we had fun, but then I moved and it just kind of fell to the wayside. But u have given me an inspiration about making things related to Wegeners Awareness. What a great idea! And I love the colors, black and red too. :) I may have to begin sketching some ideas.....I thank u so much for that idea! I'm lovin it and the wheels in my head are turning, already thinking of ideas~

NikkiNicole
02-05-2014, 03:32 PM
That is wonderful to hear that you are starting to think up ideas.

I've been trying to get my novel off the ground, but I am my WORST critic and I find myself either deleting it or ... changing the entire thing. Ugh. I'm at 32 pages tonight and stopped writing because I'm not in the mood.

mishb
02-05-2014, 08:55 PM
Lilly, I agree with everyone on here and everything they have said.........there is such a great bunch on people on this forum :love:

I agree with Alysia's 'get a cat' idea. They just love being cuddled.

Dale, I think you could play the guitar again. Your fingers are probably going to hurt for a little while, but it will only be from playing too much :wink1:

Cindy, have you looked at the Adult paint by numbers. They are similar to the ones we did as kids, but much more advance - or harder, if you want for a better word. It's a place to start :smile1:

Nikki, the book will all come together when it is ready - don't push it too hard.
I could proof read it for you if you like, my bookclub would love a challenge like this

Who have I forgotten......Anne, get out there and find Mr. Right :flapper:

Alysia
02-05-2014, 09:14 PM
I'm drawn to painting but have no clue where to start. Any suggestions, anyone?
Hi Cindy,
start with learnning it. in a group it might be better. and post what you are painting, to we can go with you in that road.

Lilly
02-06-2014, 12:15 AM
Alysia, thank u for your reply, it made me cry because u r so understanding of my situation. It is so true, this site is such a lifesaver! People just don't get us weggies. I truly feel my mom n dad do, and my sisters. I am truly blessed by that! But it makes me a bit of a recluse because if I "go out" my friends won't understand if I need to sit down, or go home. You are a sweet soul~I would love to share some paintings I've done......but I have a feeling the ones I do now may b different. I'm a different person now after divorce. My paintings are not professional but I paint different thing thank u so much for your reply. Many hugs to u.....I'll b writing more soon.... :)

Lilly
02-06-2014, 12:23 AM
I am so impressed with u Nikki, u have a blog, and u r writing a novel! I have always wanted to write, but only have about 5 pages. Maybe once I get organized I can write on it when I feel the creative side if me, eventually a book could come of it! My mom is writing a book as is my sister, both true stories about things that have happened to us. I feel we have a sort of connection. You are so pretty and your pic looks sad. I hope u r happy a lot of days, although I know u r young and afraid. I'm here if u need to vent! Please know I've had many hard times!!!!! U have helped me soo much, Thank You! I'll b writing soon. I gotta get off this phone! It's gonna cost me! Hugs!!!

NikkiNicole
02-06-2014, 06:14 AM
Oh gosh, you are writing all this from a phone! Run away! Run now! Those cell phone people love to steal our monies.
I was writing last night, I'm up to 40 regular pages, with a little research about what manuscript lengths should be, I realized that in a book format, I have 80 pages! That makes me feel a little better about the flow of things. Who knows?! I would LOVE to write full time. Dreams, I still have some of them.
Thank you for you lovely compliments. I was not sad in the photo. I was trying to be sultry! hahaha. Oh those were the days.
I write more now because I am inspired by you. You want to make these forward changes in your life, to start doing what you love again and I feel like I can do that too.
We can do this together.
We are all in this together.
When no one else in the world understands, we all have each other who know this disease more than anyone else.
((((HUGS))))

LillysMom
02-06-2014, 11:54 AM
Lilly underestimates herself! Her paintings are very primitive, but I love them. I take pictures of her paintings and frame them in 5 X 7s. She doesnt have many, but she needs to begin to do more, as y'all said. With the part-time job it is hard to get started on anything like painting or playing guitar after so many years because it will take a day to get started, and then more effort after. All of you have challenges, and I understand. When energy levels are low, even every other day, don't beat yourself up for not getting motivated. As my signature says, if you can get past all the letters and stuff at the end of my message, "Be gentle with yourself, you are doing the best you can."
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Lilly
02-09-2014, 02:59 AM
Hi Nikki, I am finally at my parents house, I spent the nite with them last nite so I could use their computer. I was too tired last nite, but am up drinking my coffee and could not wait to tell you I got tickled about you telling me to run from the phone people, Yes, the do LOVE to charge us for every little thing! Ive got to look into changing my phone plan. ~~~I think its really great how you are handling your dz. Your blog shows me your talent for writing. That is so therapeutic. And the fact that your book is twice as long as you thought, thats very encouraging! I bought a special notebook to write my autobiography. I have had many things happen in my life (as we all have) and I would like to be able to help people through a couple things specifically ive been through, and write about how these things that were "terrible" at the time, turned out to be blessings in the long run. Of course you have to live as long as me to have some things come full circle and turn into blessings, but still, I do want to help people, I always have. I admire you, and I hope you dont look at this disease run your life. Im not really sure exactly what your daily sufferings are. The first 10 years of mine, I was sooo active, and I would have flare ups where I would have joint inflammations that were so extreme I would have to walk with a cane, and my husband and our best friend Chris who we rode Jet Skis with, and I would just laugh about me being young and using a cane and my husband would help me and we would go to the pharmacy and get my mega dose of prednisone. Then I would be good for 6 months, and we would be going jet skiing and to the beach every weekend. I was in incredible shape, these Jet Skis were not SeaDoos. They were stand up, no seat. You would have to use your whole body to ride these. So I fought wegeners, and never really thought about it much. I was young, in love, and my dz was in the background because thats where I put it. I took my meds, did what the drs said, but I just lived my life. My Dr told me that was very good for me, staying so active and taking care of myself. But now, I just feel tired mentally, because so much has changed. Now I want to turn it around and make my life a happy new chapter. You are encouraging me to get going on some things I just put off. Just because im 48 does not mean I cant be in decent physical shape. And the vision I have for my little house is getting sharper in my head. I am saving money, and that is a change, because before I didnt have enough money until my sister got me a little job. Its amazing what a little extra money will do, and cutting back on tv add on channels I dont need and things like that. Its a slow go, and I get discouraged when something comes up I dont want to do like find a new dr. or look for dental insurance, etc. But you have shown me if I stay focused, and think of the end result, it helps me keep going. OH, I forgot to tell you,,,, I am beginning to sketch ideas for jewelry for Weggies! I need to think of a recognizable symbol, like breast cancer has the pink ribbon. So im going to design one for all of US! Ill let you go now, Im going to get back on the computer before i leave Mom n Dads, and see whats going on. Gotta check on all my Weggie friends. I miss them all. :( Talk to you soon,

Oh, BTW, about your pic. I laughed so hard about what you said. Now that I look at it, I see it so differently.....You dont look sad at all! You look very......hmmm.....SULTRY! Yes, very sexy! :)

NikkiNicole
02-09-2014, 04:05 AM
I'm so glad you are feeling more positive and getting motivated. That makes me feel so happy inside to have helped you even if just a teeny tiny bit. I cannot wait to get to a point in this mess where I can continue with my normal life.
I did find a trainer who works with women, and is a cancer survivor like myself, who runs this little group fitness thing and I am going to start seeing her. I will switch back to my other trainer when I am much stronger because he specializes in what I did before ... the real hard core training.
I think I was really down because I was hit with the double whammy cancer and autoimmune. The cancer treatment made my Weg's fatigue 10000x worse. Then, the depression set in. I am trying to battle back against everything and I will. I know I will.
I hope that I can finish this book (I haven't been in the right mindset the last couple of days) and actually see it published. Wow, I would feel on top of the world if that happened. We'll see what happens!!
Keep looking up, eyes forward, we still have a LOT of life left to live.

mishb
02-09-2014, 03:10 PM
Lilly, there is a lovely lady that creates jewellery for specific causes and all profits from her sales get donated to the actual illness or cause that the item/s were sold for.

The Wegener's colour ribbon is Red.

Below is the link to this ladys' jewellery. I have two of the Wegeners rings. They are made out of beads and swarovski crystals and are elastic, so basically one size fits all.

Wegener's-Granulomatosis Awareness Ring (http://www.cathyscreationsjewelry.com/Wegeners-Granulomatosis-Awareness-Ring-Wegeners-Granulomatosis-r-1.htm)

annekat
02-09-2014, 03:30 PM
Who have I forgotten......Anne, get out there and find Mr. Right :flapper: OK, Michelle! :flapper: Back atcha!

annekat
02-09-2014, 03:38 PM
Michelle, the WG ring and the others are awesome. I have saved the link in my bookmarks under "fun stuff". But it is obviously much more than that. Bless this lady for her generosity in donating a portion of her sales of these products.

mishb
02-09-2014, 04:10 PM
Michelle, the WG ring and the others are awesome. I have saved the link in my bookmarks under "fun stuff". But it is obviously much more than that. Bless this lady for her generosity in donating a portion of her sales of these products.

If you like her fb page you will see all of the great stuff she does.
Currently she is leaving hundreds of blankets on park benches for the homeless :thumbsup:
She also donates clothes and gifts to hospitals etc.
Yes. bless her and many that are helping her to try and make a difference

Alysia
02-10-2014, 12:49 AM
Lilly, there is a lovely lady that creates jewellery for specific causes and all profits from her sales get donated to the actual illness or cause that the item/s were sold for.

The Wegener's colour ribbon is Red.

Below is the link to this ladys' jewellery. I have two of the Wegeners rings. They are made out of beads and swarovski crystals and are elastic, so basically one size fits all.

Wegener's-Granulomatosis Awareness Ring (http://www.cathyscreationsjewelry.com/Wegeners-Granulomatosis-Awareness-Ring-Wegeners-Granulomatosis-r-1.htm)

WOW, who is this amazing lady ? is she here in the forum ?

mishb
02-10-2014, 07:32 AM
No, she is not on the forum......I couldn't see how should would have time
She is a very busy lady - works fulltime and also makes jewellery and other care packages.

Lilly
02-12-2014, 02:41 AM
Hi to all my weggie friends! I wanted y'all to know that test results from my Rheumatologist all came back good 😄 No blood cells in my urine, CXR was unchanged, ANKA was negative! Sounds like I'm in a remission!!! For some reason, my lethargy and low energy and pain in my face is still there,he said my body is still fighting the dz, right now my body is winning. He wants me to stay on my 5mg of prednisone, (every time I stop it completely, I seem to flare) and he said prob no rituxan infusan as we had scheduled! Yay!!! Also, my EENT did my post op sinus/eye check-up, and he said I look fantastic! No infection, my eye tubes are in the right place.......he shook his head and said "I don't know how u keep your nose so clean and handle those tubes in ur eyes, but ur doing a great job! He also checked my throat, .....no stenosis, throat looks great, vocal cords look good. 😊 I asked him why, when I clean my nose, along with the scabbing and crusting I get out, I also get out stuff that looks like soft cartlidge, it's white and has shape? He said...."I don't know what it is, but I can tell you that you do not have ANY cartlidge in your nose! It's an open cavity, with the tubes and the plastic holding up your nose" lol!!!! So whatever it is, I'm just gonna keep on cleaning! I just wanted to share. I love u all, and will talk to y'all after work today~

annekat
02-12-2014, 03:29 AM
The stuff that comes out of my nose often has shape, from where it was pressed up against the nasal cavity lining or sinus openings. IIt is not usually whitish, although maybe it sometimes can be, and I don't think it is cartilage, but thickened, built up mucus that has often been in there awhile. I think I still have cartilage, although my bridge has dropped, but I have never known where the cartilage that caved in went, if anywhere. I only know I have a hole in my septum. My understanding of the anatomy is quite limited, and no doctor has explained it to me really well. I guess I'm just supposed to look at the picture on the wall at my ENT.

I'm sorry you have lost the whole inner structure of your nose, Lilly. That is pretty hard to imagine. You have a great attitude. I'm so glad all your tests came back so positive and you can think of yourself as in remission. That is awesome! :thumbsup:

Alysia
02-12-2014, 03:52 AM
Hi Lilly, great pic. I am glad you are doing better. take care.

windchime
02-12-2014, 03:52 AM
Lilly that's great news. Keep on, keepin on. BTW love your new pic. Hugs to you. :hug1:

mishb
02-12-2014, 07:34 AM
That's excellent news Lilly and deserves a little happy dance :hug3::hug3::lol::hug3:

I also can't get of pred and at least 5mg is not the worst thing you have to deal with in this crazy life :unsure:

Lilly
02-13-2014, 03:19 AM
Thank you all! I feel kind of weird posting my "good news" when so many are fighting so hard. Don't get me wrong....I still live with this dz every day....meds, permanent nose, face pain, daily irrigation, you know, the things the dz was so happy to give me! And the uncertainty of when and if it rears it's ugly head again. But I hope my remission gives hope to everyone who is not, that it can happen! Michelle, I LOVE the Happy Dance! Soooo cute! Thank y'all for your kind words, and I'll talk to y'all tonite.......much love...

Alysia
02-13-2014, 03:53 AM
Lilly
it is so important to post good news. it gives hope. thank you.

MikeG-2012
02-13-2014, 11:24 AM
Lilly
it is so important to post good news. it gives hope. thank you.

I'm with Alysia on this one Lilly! NEVER, NEVER apologize for good news, never! We ALL need a beaming light of HOPE that there is possibly a light at the end of each one of our tunnels! Plus, we all get to celebrate when someone has good news!

windchime
02-13-2014, 11:28 AM
Good news for you is good news for all of us. So please continue to share your good news. We live vicariously through you........LOL :rolleyes1:

mishb
02-13-2014, 08:41 PM
I'm with Alysia on this one Lilly! NEVER, NEVER apologize for good news, never! We ALL need a beaming light of HOPE that there is possibly a light at the end of each one of our tunnels! Plus, we all get to celebrate when someone has good news!


.........and of course, there is the happy dance :hug3::lol::hug3::hug3::hug3:

It's not often that we get to do the happy dance.........come on people, we need the exercise - it's time everyone had some good news :flapper:

me2
02-14-2014, 01:49 AM
I like this thread . Thanks for everyone contributing. I'm going through a tough patch and it really helps to read some good news. I like your picture Lilly. You look happy there hugging your husband even though he appears to be quite a bit shorter than you and avoids looking right at the camera. He's still a keeper.

annekat
02-14-2014, 04:04 AM
Lol, Kirk, about Lilly's "husband". Yes, he's a cute little guy. I'm sorry about your tough patch, and I know it is often best to work through these things alone, but let me know if I can help in any way. I imagine I could get to your place in about a half an hour. If I run into any abundance of good firewood, I could bring you some. The pine kindling you brought me is pretty amazing stuff.

me2
02-14-2014, 04:12 AM
Thanks Anne, that is very kind of you. I think I'm doing ok though, just slow - or not moving at all. ha The weather is cooperating a little and the wood is holding up better than it was. I'm glad you like the kindling. Let me know if you run out , I'll bring some more over.

annekat
02-14-2014, 04:21 AM
Thanks Anne, that is very kind of you. I think I'm doing ok though, just slow - or not moving at all. ha The weather is cooperating a little and the wood is holding up better than it was. I'm glad you like the kindling. Let me know if you run out , I'll bring some more over. You're welcome, Kirk. Same here with the wood, with the warmer weather. But I've still got some scrounging to do. We can communicate more in private messages. That kindling should last me awhile. I like the crackling and popping noises it makes.

Alysia
02-14-2014, 04:44 AM
to my dear weggie family

http://files.myopera.com/ladysweetie27/albums/9235852/family%20isn't%20always%20blood.jpg

Carol
02-19-2014, 09:23 PM
Hi Lilly I am the one who spoke about Meditation ages ago. there are many meditation CD's around - you just put them on and listen. Kelly Howell is well know for her meditations - but you need to use headphones to get the sound in stereo. Google her name and her CD's. I do like spoken ones rather than just music or sounds as sometime I get quite agitated with those. there are singing bowl meditations which are quite nice and no words. go into a alternative shop and you will find heaps. There may even be some in your local library or medical centre. The thing is to find a couple - do not do too many different ones I have been told - that you like and feel comfortable about. Someone gave me a self hypnosis one but my husband was not comfortable about me doing it so I didn't. You can google a mantra ie a single word and find one that you feel comfortable with and just say this silently to yourself. Don't force it - if other thoughts come into your mind eg must buy some bread..... then gently push it out and return back to your mantra. Goodluck with it. Meditation in a group seems to magnify the benefit and I'm sure that you will find something in your community. Just ask around - you will be surprised just what is going on locally. Meditation heals in a different way to sleep I found. Oh yes I never meditate or sleep in my bed - that is soley for sleeping in at night. I had 3 other positions in my house according to the sun, time of day, etc where I could meditate. Because I was so sick I didn't sit up on a chair. hope this is helpful even if it is so long after the original post you made. Regards Carol Australia

Lilly
02-21-2014, 02:07 AM
Hi Carol, Thank you so very much for the information. I have written it down, and Im going to look into groups in the community, and just get one or two CD's for myself. Ill see if I like the music only, or the speaking. I have a feeling I will prefer the speaking. No need to apologize for taking awhile on getting back to me. It was just at the right time for me! I will let you know when I begin and how I like it. Sometimes I do a little meditating when I am really stressed...(I guess you may could call it meditating). If I feel overloaded or just sad, or aggravated about something, I will just sit and close my eyes and clear my mind. I Pray for peace, and just give myself time for myself. I am looking forward to learning how to really meditate. Thanks again! I hope you are doing well, feeling well, and are happy. I will talk to you soon~

LisaT
05-11-2014, 01:12 AM
Lilly, I'm also one who hates unpacking. When I move it takes me forever to get things unpacked. I mean months and months. Amazingly the stuff doesn't go away, it sits there and makes me feel guilty. Oh well. I just don't like doing it. I do need a hobby though. I'm drawn to painting but have no clue where to start. Any suggestions, anyone?

perhaps this his will make you feel better about the unpacking: we moved three years ago and still have so many boxes fill of stuff and extra furniture in our garage that we have no room in there for a car. :blushing::blushing::blushing: I try to put blinders on and ignore the yet to be unpacked boxes (if we haven't needed the stuff in three years we should probably toss it), half-finished or barely-started projects, things and places that need reorganizing... I have an ongoing guilt-inducing list of things I want to do and that need to be done, and most days it's all I can manage to feed my family and occasionally clean up the mess in the kitchen that results from feeding everyone. My kids sometimes (ok, often) dress themselves from the clean laundry sitting in baskets because I haven't put it away.... It is hard not to always feel bad about these things but we can't push ourselves or we get sicker and I try to go easy on myself about it. Our kids, pets, even we ourselves will appreciate and remember fun, creativity, time with loved ones. We will not look back and be pleased that we kept our houses perfect and unpacked all of our boxes at the expense of the truly important things!

LisaT
05-11-2014, 01:53 AM
I could really relate to your feelings at the beginning of this thread, Lilly. I often get depressed and anxious and that can be very isolating because we tend to want to be alone and not around others when we feel this way. I call it 'turtling'. I hide in my shell and mope or cry until I'm more presentable for the rest of the world. The key, I think, is to have a few people you can allow in so that you're not always so alone during these times. I have been meaning to find a counsellor or psychologist to talk with too, as others have suggested. I know in Canada, people who are on disability etc. can also access publicly-funded social workers who provide counselling. Perhaps there is something similar in your area?

Finally, your painting and creative outlets: for me, this is key to stopping the ruminating, anxiety, grief... One of the only things that takes me out of my own head and into the present moment is the creative process... Drawing, painting, writing, whatever. Last week it was string art after I helped my daughter and some of her friends do a project! I would love to see your paintings and/or jewelry. In fact, I've been curious about all of the creations mentioned in posts elsewhere on the forum. Maybe on the Weggies talent outlet thread people could post pictures of their visual arts in addition to written words? I'd love to see them all. Art, colour and things that sparkle are some of my favourite distractions. I've recently started trying to do 'zen tangles', a meditative sort of doodling. I'll post one if I can figure out how... It really helps me relax when my inner critic lays off about it being a waste of time that should come at the end of the list after all of my responsibilities.... This is what I say to her (the inner critic): :flapper::flapper:

Joanne
05-11-2014, 03:59 AM
Hi Lily, I am a new member and I was really touched by your story, and particularly your gorgeous little dog Bo. You must miss him terribly. I don't live alone as I am fortunate to have a very active and lively 18 year old son who keeps me on my toes and laughing constantly, even on very bad days. From your story, you seem to be a very loving, giving and talented person who has certainly been through the ringer, and I'm so glad you've got great family to support you. Don't give up on finding a new boyfriend or partner. Why shouldn't you find love again, when you've got so much to give? It happens all the time, and in all circumstances! Even though you may not feel too positive right now I think there's so much hope for, and you clearly have a lot going for you, despite your illness. I didn't realize myself how depressing long-term ill health and pain can be, and if there's any good that's come out of it for me, it's given me a deeper understanding of what other people endure which I didn't have before. I wondered if you had thought of helping out at an animal shelter when you've feeling better? We have them in the UK and they never have any shortage of volunteers and I'm sure they'd make allowances for when you're not so good. I haven't had any pets since I started getting ill as ours were elderly and eventually died and like you, I didn't want to take on the responsibility again because of my health etc. Losing my dog was the worst pain ever too! But recently a little scraggly cat from over the road has befriended us. She was initially very grumpy and anti-social, now she is the sweetest little thing ever, and she's taken my mind of a lot of things. It's amazing what a little mutual tlc can do! When she's wailing at the door, I have no choice but to get up and see to her, even if I'm in a lot of pain and discomfort. Focusing on someone or something that you love or care about really helps. I'm sure you'll be feeling better soon and I also agree that counselling can be really helpful, as it's your chance to focus completely on yourself. Good luck with everything and I that hope you are feeling so much better soon.

windchime
05-11-2014, 07:05 AM
perhaps this his will make you feel better about the unpacking: we moved three years ago and still have so many boxes fill of stuff and extra furniture in our garage that we have no room in there for a car. :blushing::blushing::blushing: I try to put blinders on and ignore the yet to be unpacked boxes (if we haven't needed the stuff in three years we should probably toss it), half-finished or barely-started projects, things and places that need reorganizing... I have an ongoing guilt-inducing list of things I want to do and that need to be done, and most days it's all I can manage to feed my family and occasionally clean up the mess in the kitchen that results from feeding everyone. My kids sometimes (ok, often) dress themselves from the clean laundry sitting in baskets because I haven't put it away.... It is hard not to always feel bad about these things but we can't push ourselves or we get sicker and I try to go easy on myself about it. Our kids, pets, even we ourselves will appreciate and remember fun, creativity, time with loved ones. We will not look back and be pleased that we kept our houses perfect and unpacked all of our boxes at the expense of the truly important things!

I agree with if I haven't used it in 3 years it can probably be tossed. I do that with clothes. The boxes still need to be gone through, however. Never know what valuable tidbit might be in there. :w00t: How about 1 box a week. Now with me I don't have a garage so I've got to go haul mine in from storage. Got me to thinking.....scary as that is. :biggrin1:

LisaT
05-11-2014, 01:37 PM
I really think you should go speak to someone who specializes in mental health, as I think that would really help you to get yourself out of this hole.

It sounds to me like you feel like you have nothing to live for and just go through the motions... You need to find a hobby, or a person, or a job, or something that you're passionate enough about to keep you going.

I've been thinking about your situation, Lilly. I wonder whether there are support groups in your area? Ideally, someone with Weg's but even people with a similar disease and experience. I think it helps so much to know that someone really gets it, and to be able to help that person because you get what they're going through too. You sound like you have a lot of love to give and perhaps have trouble finding a sense of purpose if there isn't someone around to give it to, whether it's a pet, friends, family (it's great that you have a close and supportive family to lean on), or other people going through similar experiences. It makes sense that that would be difficult. So much of what used to be part of one's identity is gone or radically changed by the illness; relationships and connecting with others can be a big motivation to keep moving. I keep looking and asking around for a support group near me because even my best friend who suffers her own disability and understands and empathizes more than most, can't really understand. I feel like it would make such a difference to have even one person who goes through similar experiences to get together with, commiserate with, celebrate the successes and help each other out whenever able. The closest thing I've found so far is an arthritis group that meets in the evening half an hour from my house, which just isn't feasible with my fatigue. I'll keep looking though. I wonder whether there might be a group or even a person that you can get in touch with. I hear you about your little dog Bo, too! We got a dog a year ago and she is my little furry saviour. Unconditional love and cuddles can be such a comfort. Maybe you could consider a pet again if you could have a plan in place to leave him or her with family or friends if you go away. We found a really nice lady through the rescue agency from which we adopted Lexy, who will dog-sit her at her own home when we're away.

I don't live alone but I can see that it could be lonely and perhaps scary with this illness. When we don't feel well and can't go out it can be isolating even living with family. Are your parents and sisters able to pop in and see you and help when you're not up to going out? Sometimes it's just nice to feel taken care of a little bit...

I'm glad you've been inspired to start painting and making jewelry again and can't wait to see some of your work! And I agree with Phil and the others who've said you may well find love again. You are so much more than your disease.

acker
05-12-2014, 04:35 AM
Hi Lilly, Oh yes I can relate to your story, I had prostate cancer a few years ago, so had an op and they have been monitering me ever since, my partner of 15yrs didn't understand how that affected the way it changed me mentally, so we split up, but after a while a year or so, she realized how much I did with and for her, so wanted me back. by that time I had grown away from her and felt better about myself, and didn't feel the same way. It was just after that she commited suicide, and wow then the guilt feelings hit me hard. After quite a long time I met someone else, but that didn't work out, since then I have met a few others but nothing seems to go right and I feel it must be something in me that's not responding how I used to be. What happened next was my left hip was getting bad, so I had x-rays and they found out that I had arthritis badly, and then to top it all off I got this Wegie thing and couldn't walk for about 4 weeks after coming out of hospital. Luckily I had a really good friend, a mate who I met through the motorcycle club I used to run ( I don't have any family ) apart from a sister who rings me and asks how I am, then before I can answer, tells me all about how ill her and her husband are. Just before last Christmas my best buddy died, the one who used to help me out. So yes I can relate to your lonelyness, and lack of energy, crying, depression and not wanting to do anything. I do force myself to go out on a Saturday night as I love live bands, and there is a Pub quite near that has them on, but even that makes me depressed seeing couples together, going back home on my own afterwards. I feel so lonely most of the time, the phone only rings when someone is trying to sell me something or one of my friends has trouble with their car, motorbike, plumbing, clock etc, as I am a very practical engineering sort of guy. None of them understands my illness, but I have found a wonderful new tool, it's a leaflet by John Mills of Vasculitis UK, called "Understanding Vasculitis" so I am going to pass it round to friends, neighbours, doctors, nurses etc, and just hope that someone understands how I feel, at last.

I think this site is wonderful, but nothing can replace face to face talking, or a kiss and cuddle with someone who cares.
Look after your family, they are one of the most precious things in the world !!

Sorry I don't think I've been much help to you, but remember you're still young. Not an old cogger like me at 69.


I wish you all of the best for the future :thumbsup: Acker

annekat
05-12-2014, 11:09 AM
Acker, you have been through a lot of hard times.... I hope that being a member of this group will bring some light into your life, as it certainly has to mine and I'm sure many others. It's spring, summer is coming, get out and go to the pubs, ride your motorbike, and have a good time! I've kind of gotten over feeling bad at seeing couples together... I figure they probably have their problems just like everyone else. I think your time will come to be with someone special and enjoy life more fully!:thumbup:

Alysia
05-12-2014, 03:32 PM
thanks for sharing your sad and touching story, Acker. now that you are here, I hope that you will feel less lonely. you can always come here and share.

acker
05-12-2014, 11:16 PM
Acker, you have been through a lot of hard times.... I hope that being a member of this group will bring some light into your life, as it certainly has to mine and I'm sure many others. It's spring, summer is coming, get out and go to the pubs, ride your motorbike, and have a good time! I've kind of gotten over feeling bad at seeing couples together... I figure they probably have their problems just like everyone else. I think your time will come to be with someone special and enjoy life more fully!:thumbup:

Hi, thanks for your kind words, yes it's good to be part of this group, a real lifesaver, I'm so glad you find it's the same for you too, it's so good to just get it off your chest now and again. Most of my friends don't even know about things that have happened to me, mostly because I'm the one that tells all the jokes and funny stories ( which is a great outlet for me ) and I love to hear people laugh.
This site and the wonderful people on it, as yourself, are the only one's I have opened up to in years, and what a relief it is. Your right summer is on it's way, that alwas makes me feel so much better, there are some lovely country rides around here, and getting out on my bike is a huge release for me.

I have also started to learn to play the blues harp ( harmonica ) and would love to join a band again, as I was in one for 20 odd years before, just hope I will be able to keep up with them though.
Thanks once again :hug3: Acker

acker
05-12-2014, 11:26 PM
Hi Alysia, thanks for sending me all those new friends on facebook, that was lovely of you. I haven't opened up to people for years, and this site and wonderful people, as yourself, have been a huge help to me already.
Thank you. :biggrin1: Acker

LisaT
05-12-2014, 11:34 PM
I've kind of gotten over feeling bad at seeing couples together... I figure they probably have their problems just like everyone else....

We (those of us who are half of a couple) certainly do! I've lived both on my own and in relationships including marriage--each has its pros and cons, but I have at times felt more lonely with a partner sitting right next to me than when I've been alone... Like in Lilly's original post about her husband just heading downstairs to do his own thing and ignoring/minimizing her pain. When you are feeling misunderstanding, criticism, lack of empathy, etc. from the person who is supposed to be your biggest supporter, it can be very lonely, just a different kind of loneliness. I would not trade my family for anything, but I sometimes long for a day where nobody judges or misunderstands or makes demands on me, or even silently notices what I haven't done... And I silently notice them silently noticing.... Or completely minimizes my pain and negates my experience by a blanket denial like, "oh, I'm sure it's nothing and you'll be fine..." Um, no, it's NOT nothing and there's no guarantee that I will be fine.

Oops, did I accidentally rant for a minute there?!? :predrage: Just a little window to the grass on the other side of the fence. I certainly feel for you, Ackerman, and everything you've been through. I hope you are able to make some more connections with people and feel more supported in your journey. Great idea to provide information to friends; hopefully some will understand. It's amazing how much it can help when even one person tries their best to 'get it' and support you. The pub with live bands is a good idea too. Maybe you'll meet someone there who shares your interests. And this forum is amazing. I have quickly become addicted because nowhere else do people so completely understand what I'm going through... I hear you though about needing some in-person contact and I hope you find it. I wonder whether there are any support groups in your area? Arthritis, Wegs or even autoimmune diseases generally... That might be worth trying.

acker
05-12-2014, 11:56 PM
We (those of us who are half of a couple) certainly do! I've lived both on my own and in relationships including marriage--each has its pros and cons, but I have at times felt more lonely with a partner sitting right next to me than when I've been alone... Like in Lilly's original post about her husband just heading downstairs to do his own thing and ignoring/minimizing her pain. When you are feeling misunderstanding, criticism, lack of empathy, etc. from the person who is supposed to be your biggest supporter, it can be very lonely, just a different kind of loneliness. I would not trade my family for anything, but I sometimes long for a day where nobody judges or misunderstands or makes demands on me, or even silently notices what I haven't done... And I silently notice them silently noticing.... Or completely minimizes my pain and negates my experience by a blanket denial like, "oh, I'm sure it's nothing and you'll be fine..." Um, no, it's NOT nothing and there's no guarantee that I will be fine.

Oops, did I accidentally rant for a minute there?!? :predrage: Just a little window to the grass on the other side of the fence. I certainly feel for you, Ackerman, and everything you've been through. I hope you are able to make some more connections with people and feel more supported in your journey. Great idea to provide information to friends; hopefully some will understand. It's amazing how much it can help when even one person tries their best to 'get it' and support you. The pub with live bands is a good idea too. Maybe you'll meet someone there who shares your interests. And this forum is amazing. I have quickly become addicted because nowhere else do people so completely understand what I'm going through... I hear you though about needing some in-person contact and I hope you find it. I wonder whether there are any support groups in your area? Arthritis, Wegs or even autoimmune diseases generally... That might be worth trying.

Hi Lisa, thanks for your advice about types of groups in my area, I will certainly give them a try.
I always keep my eye out when I'm at the band gigs and motorbike do's, I think I'm more impatient the older I get :confused1:
Don't worry about having a rant, I do quite often, and feel much better for it :hug3: Acker :thumbsup:

kathy.parkerwhite
09-10-2014, 05:41 AM
Lilly you sound like a very nice person with a loving spirit and a giving heart! I'm sorry you have gone through such emotional trauma along with dealing with WG signs and symptoms! I have had WG for 11 years now. Both my husband and I had to retire early. I was diagnosed first in Aug. of 2003 with WG then a month later my husband was diagnosed with Nash's liver disease and ended up having to have a liver transplant. There were days that were so overwhelming I thought we'd never get through all the problems from medical to financial to emotional upsets it seemed unending! We still both have recurrent medical problems but we found that we're glad to both be alive and even though there are challenges along the way there's always hope of finding happiness you just have to be open to it! Making new friends, hey you might even try a dating service you never know you might meet the new man of your dreams who will support you and share every aspect of your life and love you through every adventure your world finds you living through! Finding Mr. Right isn't always easy and maybe there's some things you need to do first to fix your emotional well being, but you must remember you are worth whatever effort it takes to be happy! Wegener's can be a real drag, I can Totally empathize with your plight, but your world and your life if far from over! You just need to find that something that drives you to want to get up every day and be happy to be alive!!! You take care of yourself and be good to yourself start a new chapter in your life. A concerned fellow WG friend, Kathy

Carmen11
09-13-2014, 12:18 PM
Hi Lily , Your story really resonates with me . I hate hearing that you hurting like this but at the same time it gives me a sense of validation knowing that there is someone else out there that is going through what I am . Although I was already divorced by 6 years when I was diagnosed , I too feel very alone . I too have days when all I do is stay in my pajamas all day and barely get out of the house and I too have a little dog that is my best friend, I don't even want to think about what I will do when she goes which hopefully is no time soon. I've seen you on here before responding to other post and just from your pic , I would have never thought you were so sad =-( YOU are BEAUTIFUL ! Inside and out ! I wish I still looked like I did before all the prednisone , I look like a troll right now =-( What's so ironic about this is that before I gained all the weight and moon face etc. etc. I still thought I wasn't worthy ..aaahh ..what I would do to look like my old self again . I feel like it's something I'm doing wrong but my doctor says it's not , I trying to have faith but sometimes it's soooo hard , I know in my heart that this is happening for a reason , God only knows . I just really wanted you to know , you are not alone and I'm thankful for finding this forum , it truly is helping to mend my broken heart. Much love to you xoxo <3 Carmen