About empathy..

[katarzena]

I wanted to share with you guys a little story about me when I was first diagnosed. I was completely depressed, lost, confused and just wanted to die. I pictured myself that I'll be fat with thin arms and legs, have huge bald head, lose vision and hearing and just go crazy. Geesh it was horrible. I only thought about negative things. At that time (6 months ago) I lost my best friend (I still don't know why we aren't friends anymore) and the other friend died from carbon monoxide poisoning.
My sister kept telling me that I'm insane, why arent I going out? What's wrong with me, I am sick and antisocial. She mad me cry a lot when I was at my lowest point. Even now when I'm feeling much better I can't forgive her for the torture she let me go through, her and I will hardly ever be close as we were before because I hardly forgive when being mollested from someone so close to you.
I wanted to say something about how, in the beginning, I lost empathy towards other. Now I think that's normal with patients newly diagnosed. I was so angry and full of rage that I couldn't stand people moaning about things, like headaches, stomachaches, even when they were sad when a close person died. I turned into a complete bitch and thought; how can you come to me and moan about such unimportant things when I'm dying? That's exactly what I thought.
What I wanted to say is that I believe it's normal to act (well mostly ;D ) that way when you're newly diagnosed. Who wouldn't be mad when diagnosed with such disease?!
I must say a lot of things that were happening int he past half of a year made me stronger and at some point I simply decided to think positively. It was hard and a complete roller coaster of emotions but I think I'm succsseeding.
In two months I'll be done with my 6 month IV cylo. I'll be put on Imuran (most likely) and lower prednisone (I am currently at 10mg) and I stick to thinking that all of it will soon be done. There's not much else I can do, right?
I just wanted to say to all newly diagnosed people to be strong, cry when they feel like crying, but know that you will get through this just like many other people did before you!

Cheers =*

[elephant]

Katarzena, thanks for sharing and being so honest. You are a survivor and love your bravery thru all that you went through.

[DEE]

take care of u Katarzena DEEx

[Luce]

I went through the hatred for everyone else who complained that they were ill - how could they be that insensitive, I'm the one having chemo and all they have is a cold!
You do get over it and I think it's perfectly normal when you go through what we all have. You come to accept that you're kinda on your own with this thing so might as well try to make friends with it and hate has no purpose in this situation.

Pred also changes your moods and behaviour, friends and family find it hard to cope with. My husband thought I was going nuts for a while, but it was just the horrid mood swings that pred causes.

I'm sorry your sister didn't understand your situation and couldn't show compassion and understanding for you. Perhaps she thought that getting back to your old way of life would help you, but didn't consider that it just wasn't possible for you.

[LisaMarie]

Katarzena,
Oh I am so there right now....not as bad as I could be ...but there just the same...had to explain this lovely disease more in depth to my 15 yr old yesterday...tried to play it off as "no Biggie"...cause I don't want to scare him...he is staying with my parents due to family issues at my home...he is doing well there and it was the hardest decesion to make but the best one for him...I skated around the disease for the past month...but the more fatigue and sick I get the more I know I have to fill him in alittle.....My parents are not too happy I am sure but I don't wanna freak him out when i loose more hair and have a chubby face...and am too tired to make my visits with him or go to his games...Lord I do not want him to think I am abandoning him...My mom is under the belief that it is not such a bad disease and most people get remission and live drug free...at first she refused to believe I have it...Ughhh ...she thinks I need drug to calm me down from the pred...because i am looking at the negative..I don't just look at the negative...but truth is there is not much positive about WG...and....the way I am wired is prepare for the worse and hope for the best....Yes I am angry that I have WG...and at times I have my "it's not fair!!!!" moments....but I try to focus back on getting the care I need to keep me going...I am blessed that I can still work.....and Blessed to have found this forum....Thank you for sharing ...you are truly an inspiration
Lisa Marie

[jola57]

Dear Katarzena and LisaMarie, you have been thru your darkest moments ans survived and are stronger for it. No matter if we have support or not from our families, they are not able to see what it is like for us. Outside we look normal(well a little or more round) and our lovd ones an not so loved ones, don't understand tha we feel like chewed up slippers. Please know that we are all in this together, we are a family that understands, supports and does not judge. Comming here is my lifeline. As the song says 'YOU ARE STRONG, YOU ARE INVINCIBLE , YOU ARE A WOMAN"

[Lightwarrior]

Dear Katarzena and LisaMarie, you have been thru your darkest moments ans survived and are stronger for it. No matter if we have support or not from our families, they are not able to see what it is like for us. Outside we look normal(well a little or more round) and our lovd ones an not so loved ones, don't understand tha we feel like chewed up slippers. Please know that we are all in this together, we are a family that understands, supports and does not judge. Comming here is my lifeline. As the song says 'YOU ARE STRONG, YOU ARE INVINCIBLE , YOU ARE A WOMAN"

Ditto to everything Jolanta said....Well said Jolanta!!!

[Sangye]

Ditto from me, too. I honor your courage in beginning this thread, Katarzena. And for everyone who has contributed to it. We are tough cookies.

One thing that sustains me on this road is remembering that as I deepen in compassion for my own suffering, I can extend that same compassion to others. Some days it's harder to do than others. I have the same habit of thinking "Oh for Pete's sake" when someone complains about something that seems trite to me. But I keep on myself about it. In my belief, if I don't use Wegs to become more compassionate, then it's a wasted opportunity. In the end nothing else in the world matters more than compassion.

[Lightwarrior]

Ditto from me, too. I honor your courage in beginning this thread, Katarzena. And for everyone who has contributed to it. We are tough cookies.

One thing that sustains me on this road is remembering that as I deepen in compassion for my own suffering, I can extend that same compassion to others. Some days it's harder to do than others. I have the same habit of thinking "Oh for Pete's sake" when someone complains about something that seems trite to me. But I keep on myself about it. In my belief, if I don't use Wegs to become more compassionate, then it's a wasted opportunity. In the end nothing else in the world matters more than compassion.

To quote a very wise lady "I love our group"

[pberggren1]

Well put Sangye.

That is how I feel most of the time.

With my best friend recently passing I have felt much for compassion for people in general.

[Col 23]

Oh Kat, I can feel the pain youve been through, whats that saying what doesnt kill you makes you stronger. I went through alot of the above that you went through and became very depressed. I too had a hard time with relatives and siblings and my kids to start off with. I learnt to narrow my circle and anyone that what stressing me out I lessened the contact. My self esteem has taken a battering and Im only now starting to deal with things a bit better and be a bit more postive but some days its not good.
I think the Pred does cause weight gain but depression can also make us overeat. The soap suds taste in my mouth makes me want something sweet so I can taste it. I think I could have watered the garden for a year with the tears I shed initially.
Thinking of you
Col 23

[katarzena]

Thank you all for your support and kind words. :)
We really are all in this together, somehow, no matter how many continents and seas are between us.
I hope that all of us will soon get out of this nightmare, one by one.
Cheers

[Terri]

[QUOTE=jola57;18851] we feel like chewed up slippers.

Thanks Jola. Sometimes I'm at a loss for words to describe how I feel today. That is perfect.
Worn out, little on the rough side but still useable. That will be my favorite quote from now on. Unless of course, some miracle happens and a cure comes around.:rolleyes: Luv you all & luv this site

[Jack]

But I don't want to smell like my old slippers! :(

[Sangye]

Aww, Terri.... big hugs from your East Coast neighbor. I hate those chewed up slipper days. It'll turn around, you can count on that with Wegs. Love to you, my friend. :)

[LisaMarie]

Having a rough patch right now....plan on step two of cutting the rest of my hair off before i go home to start ctx....my best friend here understands my need to be able go control some form of this roller coaster ride..see i have always had long curly blonde hair since i was a teenager shortest i ever cut it was sbout 2 inches below my shoulders...i just cut 10 inches off and plan to cut the rest off tomorrow.

..it will be about 1-2 inched long but cute i hope this way if it continues to come out with ctx as it did
with mxt..it won't be so drastic and if it does not fall out it'll grow back ...problem is n
no one back home understands and my best friend is here in florida ...i keep hearing think postive ...keep fighting...what they do not understand is that this is one way i fight back....i have been off mtx going on a week now waiting to start ctx while i continue my fight for rtx....my head feels like chewed up leather...i hate this funky chest pain...my jaw hurts and is starting to swell again...and 60 mg of pred sucks...but at this point and time i have no choice but to deal with it....So i m cutting my hair...ughh....sorry so long but i had to vent...and am trying to avoid the milk dud urge ....have found a chip called veggie straws that help with the pred craving...but fotgot to pack some....thanks for listening

[pberggren1]

I know what you are going through. My heart goes out to you Lisa Marie.

[Deanne Hull]

We are all in this together, and thank goodness for the lovely people in this group who do not judge
but have compassion for each other...

[Sangye]

Lisa Marie, I'm so sorry. I can also empathize with everything you expressed.

Unless someone has been through something similar, they don't understand that Wegs is often like trying to hang on during a hurricane. No one prepares us to do that! If a hurricane hits, you grab onto whatever solid thing you can for as long as you need it. For an outsider to say or imply that you're doing it wrong means they've never been in such a storm. (Or they didn't learn empathy if they had)

Few people in the world know how to be gentle and kind towards themselves. That harshness winds up being projected onto others. It's about them, not you. You're a tough cookie, and you are doing great. :)

[LisaMarie]

Lisa Marie, I'm so sorry. I can also empathize with everything you expressed.

Unless someone has been through something similar, they don't understand that Wegs is often like trying to hang on during a hurricane. No one prepares us to do that! If a hurricane hits, you grab onto whatever solid thing you can for as long as you need it. For an outsider to say or imply that you're doing it wrong means they've never been in such a storm. (Or they didn't learn empathy if they had)

Few people in the world know how to be gentle and kind towards themselves. That harshness winds up being projected onto others. It's about them, not you. You're a tough cookie, and you are doing great. :)

Thanks for letting me vent love my new hair cut..it is really short ..i have been reflecting on my get a way ....yes i am extremely tired and could not do everything i wanted to do....but opting to use the electric motor chair at disney ..once i figured out how to use it..lol..allowed me to spend the whole day with my friends and we all never had to wait in line for rides...great bonus....got front row for the parades...so this trip was good for me.....head home today...wish me luck getting everything in my bag so i don't have to check anything....the big joke on this trip was when i was in the motorchair i was my old self "speed racer"...i tend to be the energized bunny...not pokey the turtle...but atleast i can still work and walk and breathe so i will choice to rejoice in the positive and deal with the rest....thanks again for being there

[Sangye]

I'm glad you had a good time. My friends laugh at me when I'm driving the grocery store scooters. They think I'm going too fast (as if you could on those things!) and are constantly telling me to be careful, be careful. It's because they only see me staggering around on my feet and they assume I'm just as "off" when I'm behind the wheel. But hey, I haven't busted up a store yet. :D

[Lola]

I'm having a visual of 2 ladies with very short hair - speed wheeling through the store with their scooters. I gather my courage and grab onto the back of one of the scooters to hitch a ride - careening around corners. What a thrill! The wind ruffling my very thin hair. Whoo Hooo

[Sangye]

LOL-- You just know Jack is gonna come on here and ask if you're on too much pred, Lola. In 3...2..1... :D

[Jack]

Hi Lola,
Do you think that perhaps..........................


;)

[Palmyra]

I was so angry and full of rage that I couldn't stand people moaning about things, like headaches, stomachaches, even when they were sad when a close person died. I turned into a complete bitch and thought; how can you come to me and moan about such unimportant things when I'm dying? That's exactly what I thought.
What I wanted to say is that I believe it's normal to act (well mostly ;D ) that way when you're newly diagnosed. Who wouldn't be mad when diagnosed with such disease?!
I must say a lot of things that were happening int he past half of a year made me stronger and at some point I simply decided to think positively. Cheers =*

So Katarzena, how did you get over the anger? What was the turning point that made you decide to think differently/positively?

My daughter has been sick for so very long. I think at this particular moment she is simply tired..really sick and tired of being sick. She does not want to go in for blood tests and another Rituxin infusion. Its time, but along with the rtx have come infections and surgeries. She is tired. How can one motivate and provide that needed empathy for a loved one? Living with chronic disease is different than the care free, old normal.
Mom Palmyra

[Sangye]

Palmyra, does your daughter see a therapist? It's been a key element for me being able to deal with Wegs. I've gone weekly since I was dx'ed in 2006.

[Palmyra]

She did at one time. I will encourage her to re-engage (We'll have to find a new one, as her old one past away! Happens to the best of us..)

Good news is she picked up the ball today. She called her local rheumy for an appointment, and requested the proper tests ASAP. I am learning not to be directive, plant a seed, and let her pick it up when she is ready.

And yes, the therapist is a really good idea. Thank you Sangye :-)

[Doug]

Praise God! [I mean that sincerely, not as a provocative statement, LisaMarie.]

[Sangye]

Palmyra, you're welcome. Many times my docs have surprised me by saying I had to do a treatment/drug/dose I wasn't expecting. My habitual tendency to receiving shocking news like that is to say "No." It takes a lot of back and forth discussion, asking questions, making sure it's really necessary, etc... to get me to agree. I'm better at it-- Wegs has taught me a great deal about flexibility-- but I still struggle with it.

[drz]

Palmyra, you're welcome. Many times my docs have surprised me by saying I had to do a treatment/drug/dose I wasn't expecting. My habitual tendency to receiving shocking news like that is to say "No." It takes a lot of back and forth discussion, asking questions, making sure it's really necessary, etc... to get me to agree. I'm better at it-- Wegs has taught me a great deal about flexibility-- but I still struggle with it.

Learning to expect the unexpected or to accept whatever treatment is deemed necessary is certainly one of the main things i have learned from my WG treatment. When I was really sick shortly after diagnosis it was easy then cause I was not in any shape to question or even understand much of my treatment so I had to be a passive object of what they deemed necessary to keep me alive. My family did monitor my treatment and kept track of what they were doing which I appreciated.

[Palmyra]

Learning to expect the unexpected or to accept whatever treatment is deemed necessary is certainly one of the main things i have learned from my WG treatment.
Isn't that the truth. We now practice a worst case scenario, like preparing for battle with deep breathing and all, when we go to Mayo.....if we get a better answer than expected, its always good news. But prepare for the bomb. Then go do something fun!

[drz]

Isn't that the truth. We now practice a worst case scenario, like preparing for battle with deep breathing and all, when we go to Mayo.....if we get a better answer than expected, its always good news. But prepare for the bomb. Then go do something fun!

Which Mayo do you visit?

[Doug]

I was pretty much like you, drz, in the initial stages of my treatment. You brought up an important point for people who are out of it, so far as being able to be much more than a science project until they are in better shape: It is important to have someone asking the questions for you. The bad part, most of us come down with the disease, and that person may not exist in our circle of family and friends. In my case, no one in my family was prepared to deal with my near death, let alone the steps necessary to restore me to a new normal, where I could take an active part in my recovery.

My boss at the time, an anal-retentive sort of fellow (he knows we talk about him that way- it's in a good sense!) who asked questions, became informed through the internet and contact with my doctor (who'd been his father's doctor for another issue earlier that year, so they already had this comfort zone built up between them) and those doctors he consulted with, was the point person for me. I signed some paperwork, of course, allowing this relationship with my healthcare providers, probably the only coherent thing I did at the time!

More and more, I've come to see this forum as the place people like my boss could have come to learn what he needed to know and where to go if he had to to get additional information.

[Palmyra]

Which Mayo do you visit?

We visit Mayo, Rochester. My daughter's primary diagnosis was made by Ulrich Specks, (primary involvement was pulmonary). Subsequent problems of major proportions have been addressed by Mayo R. staff to our utmost satisfaction. One gets dependent on these large medical centers, but we have to remember this is a rare disease with few docs focused on acaedemia and the science of treating these specific diseases. I lack confidence when presented with the typical US model.

She most recently had a fungal sinus infection diagnosed and treated by Mayo...so fast and efficient and surprisingly cost effective compared to seeking out treatment here in the Southwest. Her local ENT and rheumy missed it. Very happy with that system of collaborative medicine.

[drz]

We visit Mayo, Rochester. My daughter's primary diagnosis was made by Ulrich Specks, (primary involvement was pulmonary). Subsequent problems of major proportions have been addressed by Mayo R. staff to our utmost satisfaction. One gets dependent on these large medical centers, but we have to remember this is a rare disease with few docs focused on acaedemia and the science of treating these specific diseases. I lack confidence when presented with the typical US model.

She most recently had a fungal sinus infection diagnosed and treated by Mayo...so fast and efficient and surprisingly cost effective compared to seeking out treatment here in the Southwest. Her local ENT and rheumy missed it. Very happy with that system of collaborative medicine.

Is the Mayo in Arizona a good resource. A former work colleague who lives in Tuscon now goes there for his WG treatment and follow up. He has had three remissions and three relapses since 2004 but is doing well right now.

His initial treating doctor told him, "If you can survive the treatment, things will get better." He has told me this several times when i get discouraged by the constant changes from forward progress to backward steps with new problems and complications

[Palmyra]

I just cannot answer your question without resourse. We have only been to Mayo, Rochester, and that was under dire circumstances upon her initial symptoms of severe pulmonary problems and early questions raised by her local pulmonologist. To be entirely honest, I have not heard that Mayo locations outside of Rochester are great sourses of information for Vasculitis patients.

I would think many on this site have had experience with one or more of the major vasculitis centers in the US, and could provide resourses for you. We hate the food in Rochester, but love the docs!

JTF

[drz]

I just cannot answer your question without resourse. We have only been to Mayo, Rochester, and that was under dire circumstances upon her initial symptoms of severe pulmonary problems and early questions raised by her local pulmonologist. To be entirely honest, I have not heard that Mayo locations outside of Rochester are great sourses of information for Vasculitis patients.

I would think many on this site have had experience with one or more of the major vasculitis centers in the US, and could provide resourses for you. We hate the food in Rochester, but love the docs!

JTF

I have found several good restaurants in Rochester I like and even thought the food at the Mayo Clinic was pretty good. I like food though and might be easy to please.

[Palmyra]

PS....I did recently attend a local VF meeting in the Dallas area. A Rheumy that trained under several of the brilliant minds of John's Hopkins doc's, now lives in Dallas and has a private practice here. He stressed that his experience was key.....seeing many, many vascultitis patients for years. Even then he differed to the specialists that do the research and treat only autoimmune vascultis. He said he does not make patient decisons without consultation.

I think all things considered, the specialists depend on training within one of the major vascultis centers, as they have seen and treated concentrations of this disease beyond the normal rote population of MD's.

I hope this helps!

[Sangye]

Is the Mayo in Arizona a good resource. A former work colleague who lives in Tuscon now goes there for his WG treatment and follow up. He has had three remissions and three relapses since 2004 but is doing well right now.

No, Mayo AZ is not a great resource. It's better than seeing a local rheumy, but they don't see much Wegs there. I was treated there for about 1.5 yrs and it was nowhere near the care I received once I began at JHU. At the time I didn't know about the major centers, but in retrospect I'm surprised at how poorly my case was managed when the doc had direct access to Mayo Rochester docs.

[LisaMarie]

I'm having a visual of 2 ladies with very short hair - speed wheeling through the store with their scooters. I gather my courage and grab onto the back of one of the scooters to hitch a ride - careening around corners. What a thrill! The wind ruffling my very thin hair. Whoo Hooo

Lola ...if we can ever arrange it we better put it on u tube and makes lots of money for WG research....I am lucky for now I only use a speed scooter..lol...on big trip days...ike trying to keep up with everyone at disney...other wise I just go along the best I can....thanks for the laugh....It is always good when we can laugh at ourselves

[Jack]

Sangye's scooter -

http://images.allegrocentral.com/4C/F2/jet-powered-mobility-scooter-560811-MEDIUM.jpg

[elephant]

Don't forget the little pedal pushers. :)

[Palmyra]

Absolutely love it Jack...especially the little basket on front.

[Jack]

It would be no good for shopping if it did not have a basket!

[pberggren1]

Those look like Rolls Royce to me!

[Sangye]

ROTFL-- Oh, it's perfect! I can see myself heading down the canned foods aisle of a grocery store with the wing sticking out--- clank, clank, clank, clank... Big sale on dented cans the next week! :D :D :D

[elephant]

Jack we need to give that wing a trim for Sangye's sake. :)

[Lola]

Very cool ride, Jack! You are a talented designer.

[Jack]

Sorry, not my work. I stole it! ;)

If I had designed it, it would have been more practical - wider track, lower seating and some sort of bike engine I think. (sorry, I can't help it ;) )

[Lola]

You're right, Jack. I can see that this is definitely NOT your work. You have much more class than this represents. Cornwall, huh? I am truly jealous.

[LisaMarie]

:mad:ok talk me down guys.....my lovely family member told me that once I am in remission i should just forget WG cause it won't come back...she read the little blip on the vasculitis page that say s some obtain remission for 20 yrs with no meds.....it sucks cause I really need her support.....they say it is because she is scare...but hell if I listen to her ...i'll be doing the worse thing possible...once you have WG,,,it's always there and you have to watch it...ughh....maybe i need a milk dud ....i just wanna shake her...she is an educate nurse in denial ...i wanted her to go with me when they have another conference....guess i 'll be going it alone...if it is in the midwest that will be sweet....thanks for letting me vent...

[pberggren1]

No problemo Lisa Marie. You won't be alone at the next Symposium, some of us will be there. I plan on attending. I tried to get to the 2004 one -not enough money, 2006 -not enough money, 2008 -not enough money and other plans came up. But I am already saving and planning for 2012. It is tough when someone close to you like that, your sister, does not want to take the time to understand what you are going through with Wegs. I have alot of cousines and Aunts and Uncles that don't even believe that I am sick. They just think I am being lazy and trying to use the system.

[Lightwarrior]

:mad:ok talk me down guys.....my lovely family member told me that once I am in remission i should just forget WG cause it won't come back...she read the little blip on the vasculitis page that say s some obtain remission for 20 yrs with no meds.....it sucks cause I really need her support.....they say it is because she is scare...but hell if I listen to her ...i'll be doing the worse thing possible...once you have WG,,,it's always there and you have to watch it...ughh....maybe i need a milk dud ....i just wanna shake her...she is an educate nurse in denial ...i wanted her to go with me when they have another conference....guess i 'll be going it alone...if it is in the midwest that will be sweet....thanks for letting me vent...

Maybe she is in the bargaining stages of loss, if some can obtain remission then you must be in that group, bargainning and denial..I hope she comes around. This is always a safe place to vent.

[LisaMarie]

thanks guys...it's my mom...and it just really suck.....

[Terri]

Sorry to hear you are going through this. It's not like you really need to have the extra stress put on you.
Be careful. Every time I end up with a flare it is usually from some stressful situation that I can't let go of.
You have "us" for support so don't let mom get to you.
I know where you are coming from. Just the other day I had to ask my husband, "and would you like to know how I feel today?" very seldom does a family member ask how I feel. When I get really cranky it doesn't take them long to figure it out. I have 7 siblings and only 1 calls to see how I am doing on a regular basis. My mom has rheumatoid arthritis and is 85, we have some of the same complaints so we actually have alot in common. Sometimes I feel 85.....:mad:
I have a sister-in-law that told me I dwell too much on this disease and several members of the forum gave me their support and made me realize that knowledge is power and she doesn't know how I feel either.
Things will get better, it takes time.;)

[LisaMarie]

Thanks Terri i am trying not to dwelll and decrease stress...it can be hard at times...I just don't get it ...she is also a nurse ...we are trained to look at the whole picture...to research ..to listen to our patients and ..it's like she just wants to put her head in the sand....It makes me feel like I am making a big deal out of nothing but deep inside I know this big bad dog is just waiting....I am not even in remission yet...so it may be a long hoe but If i prepare maybe it won't be such a rough roller coaster ride.....

[elephant]

I feel your pain, My family has been pretty good, and some have come around and ask questions about WG, but my friends don't get it. Some are doctors/nurses! Hello!! They always say you look great! Even in my worst expect when my kidneys failed and my hemoglobin was 4!

[DEE]

I think we should wear a badge that says ............. yes i know i look great but i feel c...p !!! i find nothing worse than having to stand in front of someone when they are telling you how well you are on a bad
moan over DEEx

[Jack]

One advantage of looking thin and drawn and being in a wheelchair is that I now get priority treatment. But I have noticed that people tend to speak to my wife instead of to me!

[DEE]

Jack you need a badge thats says ......... I CAN SPEAK TOO ..... :) DEE X

[Doug]

Dear Lisa Marie - I can't imagine losing a critical member- your mother- of your support group, and I can only say that I am committed to add whatever I can, whenever I can to postings on this forum to remind you, as a weggie myself, that I absolutely appreciate what you are saying, that you are not alone.

If we can't be there physically, we still can send you electronic hugs! >big hug!<

I hope your mother doesn't have to see you in a hospital to appreciate the fact of Wegener's for life, and I do hope and pray she comes around. It is hard to have a child with a potentially fatal illness, as you doubtlessly can appreciate. It's something that happens to others. She's probably seen cases of it as a nurse, and, as is suggested above, is going through the five stages toward acceptance.

Have you had a chance to talk with her, privately, about WG, how you feel about it personally, and how you feel about her current inability to accept a future where you may have flares? She needs to know you need her support.

You might be able to reassure her, too, by noting that you, as a diagnosed weggie, are more apt to recognize the symptoms of a relapse (which usually include those you had initially- perhaps others who've had relapses can get more specific), so less damage is done before you seek treatment, and recovery then remission or a "new normal" state come faster.

The main thing now is not to stress out. Easier said than done, right?! Well, let us help you on the forum as long as it takes.

[Sangye]

Lisa Marie, how awful for you.

Without knowing your mom I can't comment on whether the root of her attitude is from denial or if she's generally ignoring your suffering. My own mom and sister (my entire family at the time) deserted me 3 months after dx and I've never heard from them since. I was in obvious dire condition physically and financially. It wasn't denial, it was cruel--no way to sugar-coat it. Before they left, their indifference to my suffering was a painful and ongoing source of stress.

If you feel she's just uninformed, it may help to share the statistics that JanW posted from the Symposium (what % flare and what % don't ever achieve remission, etc....) Also, a print out some of the New Member stories might jar her out of denial.

Regardless of her reasons, it's a chance for you to develop compassion for yourself, which allows you to stand up for what you know is in your best interest. The more clear you get in your own mind about it, the less others will try to impose their will on you. If you need others to get it, they will probably continue to disappoint you. I've learned this in therapy and hope it helps you or someone else. :)

[JanW]

Lisa Marie -- I will tell you that at the symposium most weggies (and others) were there on their own and they seemed to luxuriate in being around "their people." While you may think it's a great idea to go with a caregiver or family member one thing I noticed about some of them who were committed enough to go was that when talked to them it was almost as if they "owned" the disease and the pain of the disease (because it was so tough to watch, care for, the family member, etc. etc.) and I found it really difficult to talk to the patient (and sometimes the patient found it difficult to talk if their caregiver was right there). People with their caregivers were going on to meals on their own, speniding breaks with one another and generally probably keeping a little more to themselves -- and you miss out on a lot of the benefit of the conference. Caregivers are very active and vocal in this organization and it's wonderful to see...but the best ones also let their patients go off and be with other weggies. This seemed especially true of the parents, because if the children are fairly young they are pushing them away (as is appropriate and good).

[Sangye]

I've seen what Jan is describing with friends. Caregivers who are very involved in all aspects (eg dr appts, drugs) often express things like "We're in this together" which is great on one hand, but on the other it denies that the patient is the only one who's actually experiencing the physical, mental and emotional fallout of the illness. I've actually heard caregivers say "We're having a lot of pain today." I always think, "Really?"

[Doug]

A confusing issue. Like the disease itself, it seems we each have different issues and experiences with caregivers.

Mine have been very positive.

Well, at one point and within a couple days, four different church ladies brought over chicken and noodles to save us making meals. It took me a while to eat chicken and noodles again! But, bless their hearts, they were helping my family when I was at my very worst!

[Sangye]

I've had great support from friends, too. I was referring to people who are in a caregiving role on a daily basis for years. There is ample opportunity for the caree and the caregiver to become self-absorbed and not see the others' needs.

[Doug]

OK! Again, different experiences come into play. I've not had the need for long-term caregivers, fortunately, but you've had a ride from hell with your WG, Sangye.

[Jack]

Problems with friends and family over their attitude towards all the issues surrounding Wegener's seems to be very common. I've hinted in the past that I'm saddened by my wife's lack of sympathy which does not fit in with the character of the person I thought I had come to know. This even resulted in her leaving for several years before eventually returning. She is torn by a conflict between her compassion and the fact that this disease has not only wrecked my health, but ruined a large part of her life too. This is not what she planned when we got married and she resents this. I don't think we can appreciate just how much strain this illness puts on our close family when we have so many of our own problems.

I would not want my wife or children to run around trying to help me and fretting over everything, that would annoy me too. In fact, my youngest daughter has a tendency to do this and I have to tell her not to. However, when things are going wrong, it is difficult hearing how bad things are going for them when it is me that is experiencing the problems first hand.

[Sangye]

When I was first dx'ed, my mom ran around telling everyone--friends, nurses, doctors, grocery store clerks-- that she had had a premonition that her life would drastically change that year, and this was it. It never even occurred to her to say "in addition to my daughter's life." She was completely blind to the shocked expressions from the people she complained to.

[LisaMarie]

Not sure where my mom is at ...she went with me to almost all my appointments for my trach...but as soon as Wg was mentioned she felt it was a miss diagnosis then when she researched it on the vasuclitis page she read a bleb and feels I should just focus on remission and never being on meds....there is a wall there I can not open...I don't take anyone with me to appoiintments anymore because they only half listen....or get too scared to listen.....so I deeply rely on you all and appreciate it more than you know...I just got a call they are giving me my first dose Of rituxan at 1pm so...i better get...thanks for all your support:rolleyes:

[Sangye]

I don't take anyone with me to appts, either. Since you're a nurse you already speak their language, as do I. In the past when I've taken others with me for appts, I've had to explain everything to them during and after the appt. And during the appt they just wind up wasting the dr's time with basic questions I already know. It was more exhausting than going in alone.

Best of luck with the rtx today!

[Doug]

I prefer to go alone, too.

[Jack]

My wife went with me to my last one because of being stuck in the wheel chair - she was great - pushed me to the clinic and then went back to look after the car (double parked). Collected me when I was finished a few minutes later. I don't usually take anyone with me to appointments because I don't see the point of them sitting around with me wasting their day.

[pberggren1]

If I need a long term caregiver I think I will get Megan Fox.

[Lightwarrior]

If I need a long term caregiver I think I will get Megan Fox.

I want Antonio Banderas and he has to say at least once a day "Did you miss me"?

[Jack]

Maybe the ability to cook and willingness to clean up crap should be coming a little higher on the list? ;)

[Lightwarrior]

Maybe the ability to cook and willingness to clean up crap should be coming a little higher on the list? ;)

LOL...you forgot my vivid imagination Jack, Antonio cooks, does laundry and cleans up crap. At least he does in my lala land world.

[pberggren1]

I just assumed she can cook and clean.

[pberggren1]

Oh, and sponge baths too.

[marta]

I'm glad you had a good time. My friends laugh at me when I'm driving the grocery store scooters. They think I'm going too fast (as if you could on those things!) and are constantly telling me to be careful, be careful. It's because they only see me staggering around on my feet and they assume I'm just as "off" when I'm behind the wheel. But hey, I haven't busted up a store yet. :D

Funny that you ladies are talking about that. After the diagnosis, and my time being very layed out and immobile after the diagnosis and surgery, I felt quite defeated. After a couple of weeks hanging out with my folks - in horizontal - we drove back to my home (4 hours away from my folks place and the hospital), my dad let my mom and me drive home with his new BMW 835 LI (or something like that - can't remember with my pred brain - Jack will know for sure) anyways, it has 8 cylinders... it really 'goes'. I drove the last hour home after not being able to walk for two and a half weeks. I felt so alive, and in control of my immediate surroundings... something I hadn't felt for weeks. It was exhillirating. My mom was holding on to the 'holy crap' handles with white knuckles, but it was the first taste of life I had had in a while, so I wasn't giving it up. That moment will stay in my life for ever.

[Jack]

Driving does that for me too. It is one of the few things I can still do relatively unimpeded, although I am no where near as sharp as I used to be. I feel normal again for a few moments!

[Sangye]

I drove the last hour home after not being able to walk for two and a half weeks. I felt so alive, and in control of my immediate surroundings... something I hadn't felt for weeks. It was exhillirating. My mom was holding on to the 'holy crap' handles with white knuckles, but it was the first taste of life I had had in a while, so I wasn't giving it up. That moment will stay in my life for ever.
I know just how you feel! Driving is the one thing I can do as well as I did before. I can go fast and not be exhausted just by moving. I love to drive anyway-- long trips on the highway are great. While I appreciate that I have help from friends when I can't drive, I sure love when I get my independence again.

[Doug]

The first day I drove after hospitalization and resting at home was 2 1/2 months after I rode to the local hospital in an ambulance.

At one point, because of pyschosis of some sort related to Prednisone, I didn't think I would ever be able to drive safely again.

I got into my car, that fine February day, drove an hour loop by way of a small town north of here, parked my car in the driveway when I got home, stepped out, and promptly fell on my can! Ha! I didn't tell my family that, though. I told them I was able to drive again, which meant they (my elderly parents, with whom I was living at that time) could go places again, too, and our dependence on two neighbors to go to grocery shopping, among other auto-related tasks, was over!

[pberggren1]

Now Marta, getting back to the BMW. It was probably a 750Li. Is it a large 4 door sedan?

[marta]

Now Marta, getting back to the BMW. It was probably a 750Li. Is it a large 4 door sedan?
I just called dad and it's a 745Li. Man does it go like snot.
I was going in warp factor 10 (I know where the police hang out on that stretch of highway)... he he he... and it has so much room in there, the airlines could learn a thing or two from that model.
I too love driving. It reminds me of life before Wegs. Love it!

[Hammy8241]

Maybe it's because i drive for a living that I can continue to manage to work. Career change idea for WGs?

[elephant]

That is a great idea Hammy, perfect job.

[Doug]

After I retired, I realized that was the job I was born to do!

[pberggren1]

I believe they stopped making the 745 in 2004 and in 2005 was replaced with the 750. The 745 is a very nice car. Ask your dad about the iDrive system. Ask him if it was easy for him to learn. Did he buy it new?

[Hammy8241]

After I retired, I realized that was the job I was born to do!


lol. not got the qualifications yet but as soon as i have....................

[Psyborg]

Anyone else ride motorcycle? I did for the first time in a while yesterday and it felt great (Head felt clear for first time in a bit)...that said I feel pretty lousy today. Doesn't feel like a workout to ride a motorcycle but I can't figure out why I'd have issues today otherwise.

[Doug]

Psyborg ~ Sometimes I wonder if any of us has adult supervision: First Cindy climbs Mount Everest, then a bunch of us confess to driving our cars "enthusiastically" after we were barely able to get around out of hospital, now you admit you rode your motorcycle and apparently over did it. What will come next?

Seriously, I wonder if just the vibration is sufficient to fatigue your muscles, challenge your tendons and joints while you ride? Hope you feel better later on today!

[elephant]

Maybe too much air rushing in the sinuses?? Take an easy today Psyborg. Ditto to what Doug said.

[Jack]

I would love to ride a motorbike again, but I no longer have the strength to hold it up and if I fell off it would probably kill me. (in other words - my wife would not let me! ;) )

[Sangye]

Doug, that was hilarious! I have no adult supervision. My dogs are not good supervisors at all.

[Jack]

Dogs just like to have fun!

[LisaMarie]

we are WG we fly by the seat of our pants with our meds and disease so why not life....we only live once...so i say no adult supervision....we all do what we have to do..even drive home alone and upset people when we do ....but they also upset us when they do not undetstand or show empathy....so i say live and let live...and of course "listen to our bodies"....have a great week

[Lightwarrior]

~ Sometimes I wonder if any of us has adult supervision:

ROTFL Doug, I have no adult supervision and my MSR (equivalant to administrative assistant, actually works for ICU Director but I get to share her) often laments that working with me is like hurding cats.

[Psyborg]

I love the motorcycle...but I have to say I have WAY more trouble keeping it balanced than I did when I was pre-wegs :) I avoid it when my balance is off, but to be honest my strength isn't as high for just keeping it upright either.

[marta]

I believe they stopped making the 745 in 2004 and in 2005 was replaced with the 750. The 745 is a very nice car. Ask your dad about the iDrive system. Ask him if it was easy for him to learn. Did he buy it new?

Ha ha ha, there is so much on that car he hasn't figured out. He did not buy it new, and it didn't come with a manual, so one day the car started talking to him, and after the initial shock of being spoken to by his vehicle, he didn't respond, and then it started to give him a hard time... repeating something along the line 'talk now' 'talk now' over and over again. My dad's old school Eastern Euro, so it got him going good. It's funny. So no, he hasn't figured out the iDrive system. Although that sounds like it would be a gong show to watch.

[coffeelover]

Adult spervision! Seems Doug was trying to give my husband advice regrding Weggies slowing down thier lifestyle.....WHICH HE THROWS IN MY FACE OFTEN. Doug, you ruined my chances to be freeeeeeee.

[marta]

Anyone else ride motorcycle? I did for the first time in a while yesterday and it felt great (Head felt clear for first time in a bit)...that said I feel pretty lousy today. Doesn't feel like a workout to ride a motorcycle but I can't figure out why I'd have issues today otherwise.
I rode my mountain bike for about an hour yesterday and felt just like you. I was wondering as I was puffing up some previously insignificant hills (previous to becoming a Super Weggie) if I was going to pay for it today, but alas no physical ailments today. I had a hard time sleeping last night, but that is the norm now and no longer the anomaly. Going downhill and feeling the wind and navigating the rocks and roots and trail sure makes me feel alive though.
One day I'll learn how to ride a motorcycle... but I think it's the weight that you're working on keeping balanced that might be making you feel tuckered today. My mountain bike weighs less than 24lbs, I bet yours is a bit more :)

[Doug]

Lisa Coffeelover ~ Tell Dennis I've learned to throw all caution to the wind since them, and support full running amok in general, and walking my cat wherever he takes me, hoping it's not too far and I can't get back!
If we ever meet up again, Louie can benefit from meeting your furry guys because he never exercises unless forced too. (He's my enabler!)

[pberggren1]

Marta, your Dad could go to the local BMW dealer and ask for a manual and ask for help in operating the system.

[marta]

Marta, your Dad could go to the local BMW dealer and ask for a manual and ask for help in operating the system.
You obviously don't know my dad. ha ha ;)
He doesn't ask for help, he gives it, and advice... whether you want it or not. Don't get me wrong, I loooove my daddy, but he ain't going to ask for help, ever.
But now that you mention it, I might do that for him and just bring him the manual next time I'm in the city. "How to run the Starship Enterprise".

[pberggren1]

I think the Enterprise would be easier to operate!

[LisaMarie]

Ok i need to vent in a big way ...suddenly my mother wants to go to my appointment for my trach next week and i do not want her there..........she has not been there for anything since the WG diagnosis ...she been stand offish and basically tells me to buck up deal with it and once i go into remission i will not have to deal with it any more ..she is soo nieve when it comes to WG and she 's a nurse like me ...so now why does she wanna come.....she was there for everything before but once I had my surgery to open my trach she was like ok you are fine now it won't return stop worring then when it closed off again she went into this denial mode ...ughh.......Now i have to find a way to tell her NO....she asked me if i wanted her to go ...i said no i 've been going alone all this time ...and there was really no need for her to go ...she suddenly had to go and said we would talk about it later......what part of no did she not understand:predrage::predrage::predrage:...i have found it easier to go alone with my typed list of questions...no distractions...ughhh...sorry to be so negative....but she knows I feel like crap and have no energy so if i say no ...it should be no and done...ughhh

[pberggren1]

Talk about frustration Lisa Marie. I'm not sure how I would deal with a mother like that. Mine has been so understanding and supportive even though she knows very little about Wegs compared to me.

[jola57]

Being a parent I know that anything my kids get (they are 23 and 25)I am horrified and wish it would go away as if it never was there. Maybe your mom has a quirky way of dealing with this issue. Would it be very bad to have her go along and see that this is real and it is not going to go away? It might open her eyes and get her back to the way she was before, think about it,

[shauneva]

Talking of supportive family members my aunt called the other day to see how i was doing to which i replied the usual im fine. She then proceeded to tell me how lucky i was that i have wegeners and not this terrible lupus that she has heard so much about. LUCKY ME!

[elephant]

LisaMarie, I understand your frustration. I am thankful my mom is supportive, but I have a family member that tells me I'm fine and my disease is not as bad as so and so's disease? She says, "Now that your better you can do this, you can do that...blah, blah." So I have to tell her multiple times...I'm on medicine, I take naps, my immune system is low, I have many side effects to the medicines. My conclusion is that she is insensitive, and will not change. I am talking about my family member.

[pberggren1]

My parents are really the only family members that are truely supportive. Living with them helps as well in this regard. I have a very good friend that I barely ever see that is very supportive as well. Most other family members on my Dad's side are not supportive and some believe I am not sick at all and just using the system. And most people in general don't care to understand about the Wegs.

[Sangye]

Lisa Marie, I suggest you ask her what has changed--why is she interested in going to an appt now? It's best if you can get yourself into a neutral, open state of mind before asking this. If you come from a place of inquisitiveness versus suspicion or defensiveness, you're more likely to get an honest answer.

I totally understand your not wanting her to be there. You can't understand or communicate with your doctor well if you're distracted by wondering what she's thinking or going to say. I support you in whatever you decide. Your comfort during the appt is the only thing that matters.

It's your decision in the end no matter how she answers the question. I just think it might be helpful to know what she's really thinking.

[LisaMarie]

Will try ur sugestion....but not sure i can mediate enough to get there by my appointment ....i have so much anger now because of other things going on with my mom and I .....and i do feel less destracted when i can have him focus on my questions....this is a big appointment not just a routine check....i will keep u posted ...thanks for the support and undetstanding ..i just feel so abandond by my mom and it is so hard for me to open that door to her again

[Sangye]

I know I've said this before, but I totally understand. My mom was horrible to me after I got dx'ed--very self-absorbed, erratic behavior. Three months into it she literally abandoned me with no way to take care of myself. I was barely able to walk or stand. If it weren't for my friends swooping in to take care of me, I would have been in deep trouble. If I weren't able to get a fast line of credit on my house, I would have been unable to buy food or my drugs within a week. It's been 4 years and she's never contacted me to find out if I'm dead or alive. I was the daughter who always looked after her. Therapy has shown me her pattern of abandoning me started a long time before Wegs came along and was the cause of ongoing tension between us.

Just remember, Lisa Marie-- it's a statement about her, not you. You are deserving of love, kindness, compassion and understanding. If she is unable to provide that, it's her deficiency, not yours. Hugs to you--

[pberggren1]

I'm so sorry Sangye that your mom has abandoned you.

[freakyschizogirl]

Katarzena and LisaMarie thank you for what you wrote and being so honest about your feelings. As most will know i've just been diagnosed and have a family that doesnt really understand this disease. Like LisaMarie they think it'll all get sorted and then its done with. I'm struggling to come to terms with it and i know i am so lucky that at the moment its localised to my nose.

I am also bless that i have a friend who has a rarer disease than WG and it is so comforting when we can talk and bitch in general about how much having a disease sucks and how hard it is getting the right treatment and having the support you need. We've even been joking about getting tattoos with "Limited Edition" written on us somewhere.

I always tend to look at the worse and it it comes out better than i am thankful. The first thing i did after beign diagnosed was trawl the internet for info...i have always been one for knowledge and i wanted to know more about this disease.

Thanks to this group i'm hanging onto my sanity and have recieved some great advice and support. So to all of you who've helped me so far and those who wil help me in the future thanks for being there. x x x

[Sangye]

Thanks Phil. My sister joined her! But you know, I can honestly say I'm happier without them.

Freaky, you have a good attitude. I love your idea about the tattoo.

[jola57]

Love the idea of limited edition, that fits us to a tee. Sangye, I am so sorry about your family's reaction. With everything that is happening to you, it is a marvel you are so upbeat. Big hug to you.

[freakyschizogirl]

Ya me too...was just a jokey suggestion but i'm kinda liking it now.
Wel my friend could have One in a Million cos with her disease she literally is.

[LisaMarie]

hey ...can we get a tattoo with WG?...I like Limited Edition too...but was unsure if we could get one...when I went on my little get away to see my best freind in florida she wanted matching ones but I was unsure since i 'm on all these lovely drugs...also it would be one way to get my mom awway for a while she hates tattoos..lol....oh no am I getting rebellious in my 40's...must be the pred..lol......well i go for my recheck tomorrow wish me luck...going solo ...avoid mother so I can go solo ...got my questions typed and my updated med list...hoping no surgery for a bit but the way my trach feels it will probably be sooner than I have hoped....have a great day yall:razz::flapper::rolleyes1:

[Sangye]

I hope your visit goes well tomorrow, Lisa Marie. I don't know about tattoos with Wegs-- maybe a source of infection? Good question for your list! :smile1:

[jola57]

I agree with Sangye on the tsttoos.
good lucck tomorrow

[freakyschizogirl]

i had a tattoo done last year (pretty certain i had WG then) and it didnt get infected, as long as you do your homework and get a good artist and they use clean sterile needles i dont see how it would be a problem...depending on the state of your disease. Just keep it clean and covered and you should be safe.

And i'm pretty sure i want this tatto now...unless anyone can think of something better?

LisaMarie it wasnt til i was walking home after my first tattoo i realised how much like my dad i was and how rebellious i was. Its fantastic and quite liberating.

I walked proudly (sheepishly) into my kitchen and anounced that i had got a tattoo and both my mum and sister answered in unison "what, a real one?"

[marta]

What if we make some temporary tattoos? For Weggies of course.

[elephant]

That would be fun. We can have a variety of them ...like princess WG...

[LisaMarie]

ok here's the gest trach is stable small amount granulosis tissue ....if i behave i can recheck in 3 months no exercise yet...nerve damage to my right ear with hearing loss candidate for hearing aide but want to re check in 3 months to see if it is better or worse...right jaw lesion worse as it is 3now so going to denist to ensure no abcess is starting will try to get in before i see the WG specialist...zo i promise to behave....and wait and see going to bed now talk to u all later

[Sangye]

So glad the trach is stable! I'm also glad to hear you're going to rest. Take good care of yourself, Lisa Marie. :smile1::hug1:

[elephant]

Thanks for letting us now Lisa Marie. Sleep well.

[LisaMarie]

ok guys now that things have sunk in ....has anyone had a hearing aide placed for nerve damaged hearing ....i only know of cochelar implants?

[pberggren1]

I have sensorineural hearing loss. I am totally deaf in my left ear and have 60% loss in my right ear. I have had hearing aids for a little over 5 years now.

[LisaMarie]

what kind did u get....do they fit outside or are they implants?

[pberggren1]

Lisa Marie,

I got behind the ear style. My left one is a microphone that transmits to the right one so I can hear stuff from both sides. One is Phonak and the other is Widex.

[LisaMarie]

and WG caused it?...right...o am just amazes that sincejuly when i notice i was loosing it i was on treatment to put me on rwmission and it still happened anyway...ighh

[jola57]

LisaMarie, I too am one of the unlucky ones and my hearing does not improve with my overall getting better. I still have as much tinitus and alwasy and hearing loss in both although slightly better than at the beginning.

[marta]

me three (or four or five or six....) my hearing is totally in and out. I am just having a discussion with my hubby about my hearing. He keeps telling me that it's fine, and I keep telling him that it's so NOT fine. I hear him talking but can't hear the words, so I have to make up what is being said based on context and the situation at the moment. I'm not at hearing aid stage, but nowhere near where I was before my friend Wegener came along to play. My hearing is better some days than others, but some days it's quite bad and on those days I also get tinitus with it. I just keep hoping that one day it'll surprise me and go away. How's that for ignorance is bliss?

[pberggren1]

Marta that sounds like fluid in the middle ear to me. When you swallow do you get a popping or gurgling feeling of some sort in the ear?

[Sangye]

Marta, have you had a hearing test? Very important to get one to monitor it.

My ear docs said tinnitus is usually permanent, regardless of the cause. It can wax and wane, but it doesn't completely resolve.

[jola57]

Thats true, I get once in a while tinnitus in my right ear, fortunately I think it is only what they call transference from the bad tinnitus in the left ear. I hear you Marta (no pun intended:flapper:) it is the same with me, and worse when I am in a restaurant or other noisy place. Then I can't hear at all. Surprisingly, when tests were done my hearing was not that bad, only 35% loss. I too think you should get a hearing test. You need to see where you are at and to have a base line. These tests should be free.

[elephant]

I get my hearing test yearly. When I had very active Wegeners I was almost completely deaf, my hearing is so much better now.

[LisaMarie]

unfornately my loss is quite noiticeable and does effect my life.....but i am gonna wait 3 months to have it rechecked then decide on the hearing aide....i only have hearing loss and at times pain but no ringing .....i hear partial words at times and some times nothing at all........this is one side of WG i do not like ..it makes work difficult....well off to have my jaw xrayed by the denist wish me luck

[marta]

Yeah, I've just recently had a hearing test, and it was better than just before I got diagnosed, but it also took place on a better hearing day. It can't be fluid in my middle ear because I'm still sporting the ear drains living in my ear drums that I had put in three weeks prior to diagnosis. I can still plug my nose and make my ears whistle - it's a cool party trick, too bad I don't go to those kinds of parties anymore.

[Sangye]

Marta, it's best to get your hearing checked on a better hearing day-- that shows what your ears are actually capable of hearing. If you got them checked on a bad day, you wouldn't know how much was damage and how much was just an off day.

[drz]

LisaMarie, I too am one of the unlucky ones and my hearing does not improve with my overall getting better. I still have as much tinitus and alwasy and hearing loss in both although slightly better than at the beginning.
Is a cochlear implant an option for your? They said I could get one for left ear once I get off cytoxan?

[DEE]

Is a cochlear implant an option for your? They said I could get one for left ear once I get off cytoxan?

i have an hearing aid which was fitted whilst on cyotaxan and has improved things gratly even helped reduce the tinitus the consultant said it was better done now to proyect what hear i still had

[LisaMarie]

Is a cochlear implant an option for your? They said I could get one for left ear once I get off cytoxan?
It was mentioned but i was too over whelmed to discuss it.....so opted for the retest in 3 months and discuss it then.....chicken I know but just too much to handle on that day....I am lucky i have no ringing in my ears

[Sangye]

Lisa Marie, you've got a lot on your plate right now. You're no chicken... :smile1: