Wg destroyed my life

[gigi.palumboshatz]

When I first came to this group I had a lot of support from my husband, as soon as I did Rtx he saw the IV bag that said chemo and he walked out on me after 28 years of marriage. We had no problems, he was just done. This has destroyed my entire life.


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[Pete]

I’m so sad to read this. I hope you’re getting the disease into remission. I hope you can recover from this awful shock.

[Alysia]

I am so sorry, it is heart breaking... I know about other more weggies who were deserted after becoming sick.
Do you have any other support ? Kids, family, friends ?
How are you doing so far ?
Please know that we are all here for you to support you.
Sending you prayers.

[Bing505z]

When I first came to this group I had a lot of support from my husband, as soon as I did Rtx he saw the IV bag that said chemo and he walked out on me after 28 years of marriage. We had no problems, he was just done. This has destroyed my entire life.


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Heart breaking indeed, but don’t allow this to destroy you. Don’t allow your joy to be stolen. We all know the emotions of becoming ill and going through horrid treatments. It’s difficult, and it can be discouraging, and just downright devastating, and I am sure adding in the end of your relationship just magnified the pain. It is easy to stay focused on our difficulties, but that leads us to become more discouraged…defeated…destroyed…ultimately stealing our joy. Don’t allow your joy to be stolen! Remember these hard times will pass. It is easy to fall into that pit, where you live upset, bitter, full of hate, and just drowning in sadness and guilt. None of this is your fault, and know that these hard times will pass. You may be in the darkness of night right now, but you know the light of morning is coming. Stay positive. Keep a good attitude. Stay in faith and allow the joy back into your life as you hurdle these hardships. You deserve joy and you deserve the best in life. Don’t settle for less. I am sure you are beautiful woman, with tons of love and care to offer, so don’t stay focused on the pains of the moment. New doors will open… there will be new chapters to live…new romance and love. Stay positive!

[drz]

Some people lack the ability to handle the role of being a caretaker. Some can't accept the role of being limited by illness or disability. Illness and disability can also change a person's personality and behavior and drastically alter the dynamics of a relationship. I think many of us found out that some of our relationships changed after we were changed by our GPA illness but those who stuck with us became more valuable to us. Some ended and I feel some of the one's that didn't survive were a great loss to us and our identity which might have caused us some depression. But some of those we lost might actually be a blessing or a good thing for us once we get through the stress of the divorce and adjust to our new life as single person again. If you are lucky enough to have an intimate partner who is truly supportive you are truly blessed, but trying to endure the stress of a non-supportive and/or conflicted relationship is very bad for a person's health. I believe we are better off being out of such a relationship.

[John S]

I was saddened to read your experience. This disease may not be curable but it can be arrested. I though that my life was over, re-wrote my will and distributed a number of gifts. I feel much better and see a brighter future for myself now. I may never be 100% of who I was again but I can have a great time living NOW.

And I always try to remember these sage words "Time wounds all heals".

[Masha]

Gigi,
You have already received some wonderful responses from other members. In fact, I found all of them to be substantial, truthful and helpful.
Wegeners did NOT ruin your life. Your husband has attempted to, but don’t let him. I don’t know if your marriage vows were the same as mine, but there is a part in there about IN SICKNESS AND IN HEALTH. We have no control over the actions of others, only our own.
As I see it you must deal with two issues, Wegeners and divorce. When I was born, 69 years ago, I came with no warranties or guarantees. Many people face illnesses and diseases worse than Wegeners. And as I have stated on this site in the past, it would be far worse to be the parent of someone with this disease as to be the patient. Unless your doctor has declared you to be in extreme dire straits, I implore you to look at this glass as half full. You may need to seek outside help and support on the issue of your own physical health. Fist, have a good talk with your Rheumatologist, take someone with you, ask the questions and get the facts.
Now, for the husband. Was he a true caregiver? Sometimes that job is draining. After a 28 year marriage I would say it is imperative to seek counseling. You may do this alone or as a couple. Perhaps there were other issues than the Wegeners. This is very hard for me to say, but you must also look at what role you played. I don’t know you, so I can safely say I don’t know how frightened or panicked your behavior. We all have the occasional pity party. That’s OK. Then it is time to pull ourselves up by our boot straps and give encouragement to those closest to us.
I am not speaking as someone new to this disease. I had it many years before the official diagnosis. I have also faced several very close call life threatening situations, so has my husband of 40 years. In our case we just grew closer. I say my thank you prayers all of the time. Yes, people have dropped out of my life since the diagnosis. At first I was hurt, but now I realize they were not true friends, just people I knew. Many people are afraid to acknowledge their own human frailties. Yes, occasionally people will say things that are just plain mean. Last month, on our way home from a doctor visit we stopped to get something to eat. I looked like hell, my wig was not on right (yes, thanks to Prednisone my thick brown locks are thinning white ones now) but I do have some very nice wigs, and when put on properly I feel like a million bucks.
Anyway, in walked some people we have known for 30 years. They are fully aware that our traveling has been clipped, but they continued to brag about all their trips and travels. This was interspersed with some nasty comments about my wig, with many questions about when would we be able to start living again. I never considered them friends, just people we occasionally shared some time with. No more, my husband and I both agreed that kind of behavior is beneath us or anyone we care to associate with, very unnecessary stress. On the other hand, I have some true and kind friends, not a lot but if they are really friends you will only have a few. So like someone else already said, now is the time to look to your real friends.
Allow Wegeners to make you stronger and kinder. Tune in to the tragedies in others lives. You may not be able to run to them physically but it will help you put things in perspective. If you are able to, then reach out to those going through a rough time.
Gigi, you were strong enough to post on this site. You were strong enough to reach out. Now, be strong enough for you to control your situation and no longer allow it to control you.
Masha

[whatthewhat]

Oh man, what a turd! I am so sorry. You did not deserve him leaving like that - and Rtx does not deserve to be treated that way either! It's not even chemo for heaven's sake. YOU are practicing brave and mature self-care by fighting back the Wegener's beast with a highly recommended treatment, and you deserve nothing but applause for doing so. I hope you continue fighting like that, and not just the WG. Living well is the best revenge, and you can be a contented, joyful and fulfilled person some day - without him.

[vdub]

What a creep! Sheeezeeee! Hang in there -- you are better without him.....

[annekat]

Many wise words have been written above, Gigi, and I don't know what I can add to them. Just know that I feel for you and what you are going through. Now that you are diagnosed and getting Rtx, things should start improving for you. But I can fully understand the hurt and pain that's been inflicted on you by someone you felt close to and depended upon to help you through the difficult times. It is hard to understand how he could do that. We all know that added stress is not helpful in getting WG under control. I'm just so sorry, and I hope that a year from now you can report that you are doing well on your own. In the meantime, (((big hugs to you !))) , and stay with us here on the forum. We care!

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[richard052018]

How ironic that he walks out as you are getting RTX infusions, considering by all accounts on the web and my own personal experience, RTX is a miracle drug that keeps the GPA at bay. If the drug works for you (and the numbers say it should), his life will be full of regret as he walked away from 30 years of his life.

Prayers to you. You will rebound from this.

[gigi.palumboshatz]

Gigi,
You have already received some wonderful responses from other members. In fact, I found all of them to be substantial, truthful and helpful.
Wegeners did NOT ruin your life. Your husband has attempted to, but don’t let him. I don’t know if your marriage vows were the same as mine, but there is a part in there about IN SICKNESS AND IN HEALTH. We have no control over the actions of others, only our own.
As I see it you must deal with two issues, Wegeners and divorce. When I was born, 69 years ago, I came with no warranties or guarantees. Many people face illnesses and diseases worse than Wegeners. And as I have stated on this site in the past, it would be far worse to be the parent of someone with this disease as to be the patient. Unless your doctor has declared you to be in extreme dire straits, I implore you to look at this glass as half full. You may need to seek outside help and support on the issue of your own physical health. Fist, have a good talk with your Rheumatologist, take someone with you, ask the questions and get the facts.
Now, for the husband. Was he a true caregiver? Sometimes that job is draining. After a 28 year marriage I would say it is imperative to seek counseling. You may do this alone or as a couple. Perhaps there were other issues than the Wegeners. This is very hard for me to say, but you must also look at what role you played. I don’t know you, so I can safely say I don’t know how frightened or panicked your behavior. We all have the occasional pity party. That’s OK. Then it is time to pull ourselves up by our boot straps and give encouragement to those closest to us.
I am not speaking as someone new to this disease. I had it many years before the official diagnosis. I have also faced several very close call life threatening situations, so has my husband of 40 years. In our case we just grew closer. I say my thank you prayers all of the time. Yes, people have dropped out of my life since the diagnosis. At first I was hurt, but now I realize they were not true friends, just people I knew. Many people are afraid to acknowledge their own human frailties. Yes, occasionally people will say things that are just plain mean. Last month, on our way home from a doctor visit we stopped to get something to eat. I looked like hell, my wig was not on right (yes, thanks to Prednisone my thick brown locks are thinning white ones now) but I do have some very nice wigs, and when put on properly I feel like a million bucks.
Anyway, in walked some people we have known for 30 years. They are fully aware that our traveling has been clipped, but they continued to brag about all their trips and travels. This was interspersed with some nasty comments about my wig, with many questions about when would we be able to start living again. I never considered them friends, just people we occasionally shared some time with. No more, my husband and I both agreed that kind of behavior is beneath us or anyone we care to associate with, very unnecessary stress. On the other hand, I have some true and kind friends, not a lot but if they are really friends you will only have a few. So like someone else already said, now is the time to look to your real friends.
Allow Wegeners to make you stronger and kinder. Tune in to the tragedies in others lives. You may not be able to run to them physically but it will help you put things in perspective. If you are able to, then reach out to those going through a rough time.
Gigi, you were strong enough to post on this site. You were strong enough to reach out. Now, be strong enough for you to control your situation and no longer allow it to control you.
Masha

Thank you. It’s just not what I ever would’ve expected. It’s nice your relationship is strong. I will stay focused on myself and keep pushing forward.


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[gigi.palumboshatz]

Many wise words have been written above, Gigi, and I don't know what I can add to them. Just know that I feel for you and what you are going through. Now that you are diagnosed and getting Rtx, things should start improving for you. But I can fully understand the hurt and pain that's been inflicted on you by someone you felt close to and depended upon to help you through the difficult times. It is hard to understand how he could do that. We all know that added stress is not helpful in getting WG under control. I'm just so sorry, and I hope that a year from now you can report that you are doing well on your own. In the meantime, (((big hugs to you !))) , and stay with us here on the forum. We care!

Sent from my MotoE2(4G-LTE) using Tapatalk

Thank you so much


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[Masha]

Oh Gigi,
So glad to hear you say you will stay focused on yourself. You go girl! We all only know each other in this outer space world of Wegeners. With good health you will have everything. You may or may not decide YOU want your marriage back. Yes, I can see where after 28 years you wouldn’t have expected this. That’s putting it mildly. I probably would have ended up in the funny farm.
Yes, my husband and I are strong. But we were older when we got married, both had life altering histories and we are brutally honest with each other. Marriage is work. Anyone who has 40 years in and says they have never argued or disagreed is either lying or delusional.
I hope the Rituxan infusions are helping you. They have worked miracles for me. Keep us all posted.
Be well.
Masha

[MikeG-2012]

Some people lack the ability to handle the role of being a caretaker. Some can't accept the role of being limited by illness or disability. Illness and disability can also change a person's personality and behavior and drastically alter the dynamics of a relationship. I think many of us found out that some of our relationships changed after we were changed by our GPA illness but those who stuck with us became more valuable to us. Some ended and I feel some of the one's that didn't survive were a great loss to us and our identity which might have caused us some depression. But some of those we lost might actually be a blessing or a good thing for us once we get through the stress of the divorce and adjust to our new life as single person again. If you are lucky enogh to have an intimate partner who is truly supportive you are truly blessed, but trying to endure the stress of a non-supportive and/or conflicted relationship is very bad for a person's health. I believe we are better off being out of such a relationship.

As much as I hate seeing any marriage drift apart, which is always tragic to both parties. I concur with drz on this one.

Time and space might be in order and over time, maybe things can work out. If not, and this was just his excuse to bail out of 28 years, shame on him. I've been married to the love of my life for almost 28 years, and I am the wegs patient in this relationship. I cannot imagine not having a supporting spouse! My stomach turns for you and as I often have said, "men can be pigs sometimes." (this is where my sister asks if I am sure I wasn't born a a girl--long story).

Praying and hoping that you BOTH will receive comfort, love and wisdom in the coming weeks and months.

HUGE HUGS!

[NatriceRomeo]

Hi Gigi,
I was diagnosed fairly young (17) and I’m 40 now. During this time the longest I have been without treatment is 4 months. When I lived in Australia, I was engaged to be married. My ex-fiancé did not understand nor want to understand this disease. He wanted kids (even threatened to hide the pill), among other more serious issues. I know this is a little different because you dedicated 28 years to this man whereas I only had 5 years & not near the memories you would have. When I finally left I said to myself “you have lived once without him in your life and you can do it again”. I offer this advice & understand that 28 years is so long you may have forgotten what it was like not to have this person in your life, however I have so much confidence that you can do it, find happiness and meaning again. I am cheering you on, sending a virtual hug and I am crying with you as well. It may not be easy but this disease is not for the faint of heart.
Natty


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