Being a burden and a reality check

[Velma]

okay so I need to vent.. one of the hardest issues other than accepting you have a disease that is rare and very complicated and all the ups and downs associated with that in general, is the feeling of helplessness and dependency on others. I am a very independent woman with 4 children.. three of which cannot attend doctor appointments (one is only 15, one is out of state, and one is pregnant with a 17 month old and in nursing school), so it is hard for me to ask for help. The sad part of it all is that I rarely ask for help and when I do I feel as if I am being a burden because she has to stop and change her life to take care of me. She hates it and so do I. I cannot go alone to the the next apt. Thanks to Bob from this site I have an apt at the Cleveland clinic in two weeks and they have scheduled a full day of testing and a bronch the next day. She has to miss work one day and class the next to take me. I hate this but it has to be done. No one else can go with me. Reality is for anyone new to the disease ... have a team of support you will need them and they will need others to help out too. End of vent. Thanks for reading/listening. Battle on.

[mrtmeo]

Hi Velma,
If I was in that area and wasn't working 24/7 with my mom's vasculitis, I would drive u.
I used to think about the imposing on family members, but I decided that this is really quality time with a family member and not a burden.
We only have so much time on this earth and with our family members and if life is that consuming, than we need to take a step back and appreciate why we are here and who we are here with.
Too many just want to shuffle their parents off to a nursing home, but I refuse to do that with my mom.
No one should ever be left alone like that unless they want it.

[drz]

okay so I need to vent.. one of the hardest issues other than accepting you have a disease that is rare and very complicated and all the ups and downs associated with that in general, is the feeling of helplessness and dependency on others. I am a very independent woman with 4 children.. three of which cannot attend doctor appointments (one is only 15, one is out of state, and one is pregnant with a 17 month old and in nursing school), so it is hard for me to ask for help. The sad part of it all is that I rarely ask for help and when I do I feel as if I am being a burden because she has to stop and change her life to take care of me. She hates it and so do I. I cannot go alone to the the next apt. Thanks to Bob from this site I have an apt at the Cleveland clinic in two weeks and they have scheduled a full day of testing and a bronch the next day. She has to miss work one day and class the next to take me. I hate this but it has to be done. No one else can go with me. Reality is for anyone new to the disease ... have a team of support you will need them and they will need others to help out too. End of vent. Thanks for reading/listening. Battle on.

Learning to accept and yes even ask for such help was probably the most difficult thing I had to accept about my life after Wegs. I was lucky enough to recover to the point i could leave the hospitals and even the nursing home and get by in a light assisted living complex where I can be rather independent again but know this can change again rapidly and require that i again learn to be more dependent upon others.

Today i drove 400 miles for a medical appointment with a specialist three hours away. These trips are exhausting and often require an over night stay when I get too fatigued to make it home. Next week I will stay over night for at least one day for visit to same clinic. There are some commercial work arounds to driving oneself like hiring some one to take you and accompany you but they can be rather expensive and exhausting but I found it some times necessary to use, like when my volunteer drivers got ill or weren't available. Large clinics like Mayo often have volunteers to help out of town visitors find lodging and assistance getting between appointments. Does Cleveland Clinic offer such services too?

[NikkiNicole]

I have struggled with this as well. I have been fiercely independent in my life ... so when people would offer help, I would decline. I got my rear chewed by my stepmother when I told her I was fine and not to come to the hospital while I was there having tests only to find out I had appendicitis and was being taken in for emergency surgery. She let me have it. So now, I have to tell her every single time I have anything going on that requires assistance.
It is OK to ask for help. We need to ask for help and ... we need to let people help us.
As someone already said, take it as additional time together. As we learned recently, time is incredibly precious and we don't know how much if it we have.

[Debbie C]

Hi Velma, I never officially welcomed you to our " sick little ( but always getting larger ) family. It is very difficult to have to change the lifestyle you was knew but it is something that unfortunately both you and you family will have to accept. Things will never be the same but hopefully in time will get better. I also go to the Cleveland Clinic and generally the motels will give you a discounted rate when they know you are going to the clinic and the motel I stay at has a shuttle service all about town and to the clinic. So if your daughter doesn't want to be there all day while you get the tests the are several different places she can go on the shuttle
I also live and take of my 87 yr old mother and would not leave her, I figured she took care of me most of my life now it is my turn. This is all new to your daughters and I think in time they will realize that on occasion you will need them. Good Luck at the clinic.

[Velma]

You are a good child.. My girls are 23 (twins), 20 and in NC with her hubby to be-he's in the military, and 15 who is full of everything wonderful and teenage angst. The twins are both in nursing school and the one who is taking me to all my apts also works as an ER tech so it makes her schedule slammed crazy. She will miss a day of work, possible night of classes, and we both may possibly miss Gracie's (15 yr old) first theater performance. This disease robs us of so much and family events are the worst ever. Thanks for the positive outlook. I just needed to vent. You are absolutely right and a good kid!

[Velma]

Thank you for the support.. you would think after 20 years I would be use to this.. the disease yes but not the impact on my adult children. I had been able to handle it all as they were little but now as things are crazy complicated this is what we have to do. The new normal I guess. Life lessons are never easy are they?

[LisaT]

I'm not good at asking for or accepting help and tend yo do all of my medical stuff alone... Probably not the best way. My extended family is elsewhere and hubby can't miss work usually, and with two young kids... I just go while they're in school and occasionally call a friend or hubby if he's not in court, to discuss the appt. afterwards. One time only I asked my mom to come, when I was getting two potentially scary test results on the same day and was very anxious. Shd booked to come visit and stayed with us for a week. I know I can count on my family when I need them and am 'saving' them for crises... But it's lonely. I hope your kids don't make you feel like a burden. As others have said the time together really is precious.

[cjhnsn29]

Velma, I feel the same way as you. I don't like to depend on anyone else. I learned that sometimes we just have to, doesn't mean that we are a burden or shows signs of weakness. It is just hard to do everything alone all the time. I can't imagine having WG with 4 children it's got to be tough. It's hard for me with all the surgerys and tiredness, pain, sleepless nights to even think about having children. Trust me you are a strong woman.

CJ

[daystarr8]

Hi I'm new to this forum but definitely not new to WG. I was diagnosed in 1979. I'm still here. When I was diagnosed I was told there were no females or children with this disease. I was 7 when my symptoms really started to flare and 9 when I was finally diagnosed. My dr of 34 years retired last year and I feel alone for the first time. Any information on California WG special is please let me know

[me2]

Wow, daystarr8 you have had WG for a long time. About one year longer than I have. I was 20 when I was blessed with it and I am male. It sounds like you received bad info about the disease early on just like I did. I guess we have to accept that a bit as WG treatment had only very recently been figured out. We were lucky it was because survival without treatment is very unlikely.

My original doc is about due to retire but he is not the one I see anymore. I had to go through a couple of docs to replace him and I am very happy with the one I have now. I know how difficult it can be to find a new doc- especially depending on where you live. I have to drive 2 hours one way to get to the best doc I can find.

Let people here know where in California you are and maybe someone will have a doc they can recommend. If that doesn't happen I would go the Vasculitis Foundation Web site and look at the list of consultants. They also have another suggestion on how to find a doctor.

I see that one of the consultants is at Stanford. I don't suppose you live close? VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

[daystarr8]

I'm near Fresno Yes I was on a regimen of cytoxin and prednisone for large periods of time but since bactrim came about I've had a 9 year remission and current at 11 years now. I suffered bladder cancer 11 years ago as well but I'm 11 years cancer free. And yes cytoxin exposure gave me bladder cancer I'm experiencing a lot SOB as of lately just found out vit D was super low. I hope this helps. I have sub glottis stenosis so I'm not sure I'm going to be needing some treatment for that. Thank you for responding

[me2]

I see Fresno is more than three hours from Stanford. Perhaps the consultant at Stanford could suggest someone closer to you. I take vit D supplements every day so my levels look pretty good.
I've had sub glottic stenosis a few years ago. Find someone with experience treating WG patients for this. Some doctors are not skilled at treating us and can cause more damage. The good news is that the good docs can treat the stenosis very effectively.
There is no guarantee how long the treatment will last but it is not a major procedure. I have had it done I think three times. The first time I was pretty scared but now I know it is not that big of thing. I go home the same day. And it feels WONDERFUL to be able to breath again. I have not had any signs of stenosis recurring for quite some time.
If stenosis is interfering with your ability to be active I would encourage you to seek out a good doctor for dilation.

That is great you got through the bladder cancer. I have been on lots of cytoxan for a long time so I know it is more likely that I might develop it too. It is encouraging to hear about someone like yourself who had it and was able to put it well behind. Thanks for sharing that.

[daystarr8]

Yes check your bladder regularly. I had stage 4 and lost my bladder but went to USC Norris hospital and I have a brand new bladder and it hasn't had cytoxin!!!!!! Yay!

[Girly3800]

As my husband's primary care giver I can tell you that you have to let other people help. Yes, it can be inconvenient for me but I need to feel a part of what is going on. I can't make the disease go away but I can participate in the treatment. It is as important for me to help as it is for him to accept it. I can also tell you that it is the little things that are the pay back. When my husband does something as simple as getting me a cup of coffee that somehow relieves all of the burden - on him and on me - it becomes a non-burden. As much as possible, short of neglecting yourself or causing possible harm to your treatment, schedule things around their schedules. There have been a number of comments on this forum about patient advocacy - that is imperative in your treatment. If someone isn't helping you don't have that advocacy. Just a few thoughts from the care giver side of things.

[Tom]

okay so I need to vent.. one of the hardest issues other than accepting you have a disease that is rare and very complicated and all the ups and downs associated with that in general, is the feeling of helplessness and dependency on others. I am a very independent woman with 4 children.. three of which cannot attend doctor appointments (one is only 15, one is out of state, and one is pregnant with a 17 month old and in nursing school), so it is hard for me to ask for help. The sad part of it all is that I rarely ask for help and when I do I feel as if I am being a burden because she has to stop and change her life to take care of me. She hates it and so do I. I cannot go alone to the the next apt. Thanks to Bob from this site I have an apt at the Cleveland clinic in two weeks and they have scheduled a full day of testing and a bronch the next day. She has to miss work one day and class the next to take me. I hate this but it has to be done. No one else can go with me. Reality is for anyone new to the disease ... have a team of support you will need them and they will need others to help out too. End of vent. Thanks for reading/listening. Battle on.

Venting is good! I know where your coming from on the independent person. I have 4 grown sons and I hated to ask for any help. I was always one that I would rather do for myself so I don't have to explain my every move and I just hated watching someone do something that I knew I could do better and easier. In simple terms, I was hard to work for. Easy to work with! An example, when my now 40 yr old son was a teen, he complained I wanted him to mow the lawn and he let me know that I pay him any allowance and so why should he have to mow when one of his other brothers was supposed to but couldn't I told him that if I paid him I would have to fire him! He replied that if I did pay him that he would quit. In the end, he mowed the lawn and he still didn't get a set allowance. I figure I worked on their cars, gave them money for trips to the state wrestling tournaments and money just if he had a need.
I thought that I was the worst dad ever, but to this day. I don't ask for help but they come over and do things. I try to do it my way but I am told to just go sit down. I have severe COPD as result of my WEGS. so when I try to help I get into straits and they let me know to get out of the way. I too feel bad about asking for help and I don't know exactly how to accept it but what I do know I would be nowhere with out my wife and kids. It is a thing where lives are rearranged to accommodate us but its not the helping they hate, its the disease that we all hate. Don't refuse and don't be timid about asking for help. Im working through that process now. I don't think your daughter hates attending to you but she hates this disease. Best wishes and vent on!

[Donna-from-Philly]

I fully understand this situation. I'm 1000 miles from my family but have been lucky enough to have always helped out others and now friends and neighbors help me when I'm in a bind. I hate asking for help but found it easier after a friend said "all these years you were okay with helping others; now it's your turn to receive help". I try to continue to help others as much as I can and then I don't feel so guilty