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Mitch
03-06-2011, 12:36 PM
I feel that the caregivers need some help here, and we should start some sharing. Andrew agrees. So let's start this up.

pberggren1
03-06-2011, 03:54 PM
I don't think my parents would join on here but I may be able to convince my mom.

Jack
03-06-2011, 09:58 PM
I'm in a similar position. My wife and daughters would not want to join a group like this and after all these years they probably don't feel the need to seek any advice.

DEE
03-06-2011, 10:43 PM
My husband BARON joined the forum about six months before i felt able too , it helped him sort things out when i was busy trying to sort me if that makes sense DEE x

Sangye
03-07-2011, 01:56 AM
Well, we already have Danell (for Mitch), Palmyra (for Allison), BrianR (for Marta) and others I can't remember off the top of my head. That's certainly enough to start. I say you guys go for it. :thumbup:

Palmyra
03-07-2011, 05:19 AM
I will jump in :thumbup: on this topic! It is my speciality...I am literally a professional caregiver (dentistry/oral medicine) and have had the honor of learning and dealing with the problems that you all face in dealing with this disease while assisting my daughter. While not feeling the physical pain, I can tell you that the emotional pain and stress involved has changed my life. I am now at the interesting stage of "handing over the reins," transitioning the responsibility to my daughter, which is a slow process. I have found much support on the Yahoo 'Parents' site, which is for parents of children with vasculitis. They have been a wealth of support and information when my daughter has been in crisis.

parents4wegeners : Parents of WG / Vasculitides Patients (http://health.groups.yahoo.com/group/parents4wegeners/)

I also appreciate being able to come here for the knowledge of this brilliant collective. I have encouraged my daughter to browse this site, with the hope that one day she will join and interact. Best wishes to all, and thanks for starting this thread.

Daggar
03-07-2011, 06:29 AM
Thanks for the link Palmyra!!

There are a number of parents on this site that have been very, very helpful and we appreciate it!!

WeggieParent ... JeriOrleans... to name a couple.

As a "caregiver" there are times when you'll have that "deer in the headlights" look..... it's not easy but we should still consider ourselves very lucky to still have that loved one with us!!

WeggieParent
03-08-2011, 07:15 AM
I think caregivers have the same questions as WG patients. Why is this happening? What can I do to fix it? (That's a parent thing!) What does it mean when that hurts? How long should we let that go on before calling the doctor?

Even though my 16 yr old has WG, our whole family suffers with her every ache and pain. We worry and obsess over every breath she takes when she's not feeling 100%. When she's feeling good, I still worry and obsess that there might be something going on inside her that we don't know about.

This website has been a wealth of information. I'll read a thread that may not pertain to her symptoms at the moment but I always keep that information in the back of my mind because I've learned in only 1 year, WG can do a big U-turn and do the unexpected. As a caregiver, I appreciate all the exchange of information and candid discussions!

Skicpa
03-09-2011, 07:04 AM
I'm up for a caregiver thread. Anything that may help with coping would be helpful.

Mitch
03-16-2011, 03:14 PM
Let's do it!

Daggar
03-17-2011, 03:28 AM
Is that Mitch or Danell? How did the Monday appointment go?

What should we start with for this thread?

How about .... how many times a day do you find yourself trying to hunt down answers to a "new" development with the disease or treatment of the disease? I can't remember a single day since Holly's diagnosis where I haven't been hunting for information at some point. I've got so many sites in my "Favorites" under Holly's name I've completely lost track of which is which. Working with computers all day doesn't help!!

How about .... doctors call them "patients".... what should we call them?? Must be a lighthearted name we could come up with -- winner gets a day off!!

How about .... when you do receive that day off -- how many have difficulty shutting off the internal "caregiver"? Do you find your mind wondering back to what can be done to improve "care"?

drz
03-17-2011, 10:04 AM
I'm in a similar position. My wife and daughters would not want to join a group like this and after all these years they probably don't feel the need to seek any advice.

Does your family ask you for advice or info on Wegener's disease? I would imagine they have learned a lot from you over the years.

pberggren1
03-17-2011, 10:36 AM
Some of my family has asked what it is all about. My parents know a bit since I have lived with them since dx in 2003. Other than that my one Aunt and Grandma have asked a few questions but that is about it.

Jack
03-17-2011, 08:46 PM
The subject of my disease does not come up very often in our house. It is something that the children have always lived with and think is near normal and the problems that I have are ongoing and don't require any further explanation. The only times it becomes an issue are when I am not well enough to take part in something or on the very odd occasions when something happens that tips me over the edge for a few minutes. I try not to let the children witness that, but my wife sees it and understands.

Palmyra
03-18-2011, 02:29 AM
My daughter and I are very close. We talk almost every day about a miriad of subjucts, with Weg being just one of them. For those of us that have raised a child with chronic disease(s), our role as a parent/caregiver has naturally been different. It disrupts normal adolesence and early adulthood. They have missed a lot of school. Activities have been limited. The transition to independence/adulthood is squewed because of medical emergencies and huge financial expenses (a college aged 20 year old can't take that on). I know a few from the parent's site whose kids have been able to finish college, but then have difficulty finding and maintaining a job due to frequent interuptions for tests, treatment or serious flares. Can one imagine going to high school everyday on high doses of prednisone, or on a feeding tube? Better now, but it was not good. Really not good.

As a caregiver now, I find my job being to allow my daughter to learn about and control her disease in her own way. It will be different than how I might have previously decided, but its time for me to gradually step back and let her take over. That is part of my acceptance, and it has been difficult for me. I don't call everyday and ask how her lungs are, and if she has been using her netipot :biggrin1: She probably really appreciates the decreased nagging! As a consequence, I am on these 'support' sites less. Partly because the emergencies are less frequent, but because if she chooses to utilize this forum for support, that will need to be her choice.

There are not too many parents on this site, but a few. Jack and Pberggren, you are lucky to have even the small group of support that you have. My daughter really only confides things with me, and is only gradually learning to allow her husband to 'catch up'. Yea!!

Daggar
03-18-2011, 03:15 AM
.........As a caregiver now, I find my job being to allow my daughter to learn about and control her disease in her own way. It will be different than how I might have previously decided, but its time for me to gradually step back and let her take over. That is part of my acceptance, and it has been difficult for me......

That is the transition we're involved in currently -- determining how much and how soon is the conundrum when it comes to someone who has just turned 15. Considering they still have to deal with catching up at school, catching up with friends, catching up with "normal" activities and still come to grips with having WG and all that it encompasses -- it'll be a slow and careful process. I know Holly does get frustrated at times with the "amount" of care but it allows her to try and get back to a normal routine -- as much as possible. She has started to set up her meds and plan her meals for the week -- keeping sodium below 1500-2000mg/day is a challenge in itself.

Palmyra
03-18-2011, 05:59 AM
Yes Daggar,
I remember that road. Allowing them to set up meds, and meal plan sounds like a very good step. Just like all teens, they will make mistakes, and I can remembering how crazy that would make me. One year she choose to go on a trip to see cousins, rather than have an infusion at its regularly scheduled time. We had gotten into a pretty heated row about it. She went on the trip, and came home sick as a dog. She still remembers the event, and that's how teens learn...from consequences. She had to go to school for a long time, while being feed thru a nasogastric tube at night or when home. She didn't use it at school, but couldn't eat in the lunch room with all her buddies, and then would intubate at home. I found out years later her friends would slip her food all day long. Geeze! You don't want to allow them to slide into an irreversable or life threatening 'mistake', so where do you draw that line?

Kids with type I diabetes actually go to camps, specifically for that purpose. Wouldn't it be a good idea to have a camp for kids with rare or life threatening disease? They alway listen better to younger adults or peers at that age. I hope you have some other adult support around to help you establish those 'rules'.

Palmyra
03-18-2011, 06:05 AM
To the adults on this site, how much support do you need? Do you wish you had more?

Are you able to ask for help directly? That would be really tough for me. I have gone in with several friends when they were faced with a dire diagnosis, just to take notes and ask questions. Sometimes I think just the shock of hearing all that is 'real' is difficult to take in, if you are the one that is ill.

I do believe in having a medical advocate.

pberggren1
03-18-2011, 06:47 AM
I was dx when I was 26. I had to move back in with my parents and have been living with them ever since. When I first got sick in 2003 my parents were quite worried and stressed, but was fortunately dx a couple months later. My parents still worry a lot about me and I know it is a major stressor in their lives.

Daggar
03-18-2011, 01:29 PM
“Kids with type I diabetes actually go to camps, specifically for that purpose. Wouldn't it be a good idea to have a camp for kids with rare or life threatening disease? They alway listen better to younger adults or peers at that age. I hope you have some other adult support around to help you establish those 'rules'.”

Holly has been very good at following doctors' orders so far and she was very aware of the severity of the disease (kidneys) from day one so I think it is helping to keep her on track. She has quite the support group around her as well -- both adults and youth. Being diagnosed at any age without having someone to lean on would be very difficult.... the importance of family has been realized for us.

The camp idea is a great one.... we send our daughters to summer camps every year and it is going to be difficult to send Holly off without worrying but we're hoping she is transitioned to the "maintenance" treatment by then (Imuran).

Sangye
03-18-2011, 01:55 PM
To the adults on this site, how much support do you need? Do you wish you had more?


I have variable support. I'm a very independent person though and have enjoyed living alone for many years. For the most part when I ask for help I can get it.

pberggren1
03-18-2011, 03:19 PM
I am glad you are able to get help most of the time Sangye. I worry about you living alone, but I do understand how you enjoy it.

Sangye
03-19-2011, 02:07 AM
I think in general I'm much better off living alone because I'm not exposed to other people's bugs. I also don't have to constantly explain how I'm doing. I wouldn't enjoy living alone as much if I didn't have my dogs and bird, though. They're my little family. :smile1:

Mitch
03-26-2011, 04:53 PM
This is Danell, Dagger, and it will always be Danell because Mitch is mostly in a slumber mode. We're in a different part of our lives than you are...from seeing your photos. You're probably young enough to be our child. We're "fortunate" that we are in the latter stages of our lives, etc., etc. So, you see, that we have different situations. I cannot imagine what you must be going through. I truly wish there were some way I could help. I'm trying to think here. Can you get Holly help through any type of social service? Have you tried this? This would give you some time alone, maybe.
This **** will leave the caregiver in all kinds of emotional crap. I'm still in it...you're for sure in it. The only thing that has helped me was finding the right doctor, which happened 3 days ago. I felt like I was carrying everything on my shoulders. I poured out my frustration online. Had no where else to go. So that's what you do....dear man. Hang in there...get the right doctor....Holly will eventually be fine...and you will be also.

Palmyra
03-27-2011, 08:59 AM
So, this is a bit random, but the correct thread on which to make this announcement. My daughter will receive her forth 'round' of Rituxin this week (which is good news, her B cells are re-populating and she has felt the Weg dog lurking...). But this will be the first time I will not be physically present for that first infusion. Her husband will go, and see what she goes through, for the first time. For those of you that have experienced that anaphylactic type of reaction with Rituxin, you may understand a bit of anxiety that goes along with it...

I work in a medical/surgical environment, so used that as a 'reason' for me to be there..to make sure the right meds are being pumped in, to make sure a crash cart (and someone trained to use it,) was available. So now I hand that job to her and her (wonderful,) husband. It is hard to let go....one develops a great deal of anxiety with a sick child, even if that 'child' is grown.

This is part of the caregiver's "emotional crap" that Danell mentioned in the preceding post...anxiety. I really do understand Danell and Dagger. The good news is things really do get better. Remember when your children were too young to leave alone when they took a bath? That (thank goodness!) passes and kids really do grow up. As parents, we do the best we can, then step back slowly, one step at a time, as they learn how to take the ropes.

Good luck with those doctors! Keep pounding until you find the right fit!

Mitch
03-27-2011, 12:41 PM
I still haven't mastered this site; however, I think/hope I'm in the right place. Palmyra, I, too, have a daughter who is grown and married, so I can identify with what you are saying. I'm trying to put myself in your place to see how you feel. It's difficult to go there, and my thoughts are with you.

I wrote drz today to explain to him what has happened in the meantime, since I last made a post. He had recommended that I check with the University Hospital in Chapel Hill, NC. Now, all of you who are located in the South, please take note! Mitch was in the hospital in Pinehurst, NC last week for a few days. His Wegener's was active. Our pulmonolgist there called and had an appt. within less than a week, upon his release, with the vasculitis clinic at UNC. (I did not know this existed, because I had been looking online under rheumatology. This place is located in the Kidney Center there.) Anyway, we go tomorrow back to Chapel Hill for Rituxan. His doctor, Dr. Patrick Nachman, spent at least an hour with us, after having reviewed Mick's records and scans. This doctor's info online shows that he has done many publications in the area of ANCA vasculits and Mick is a part now of his clinical trials. We've FINALLY found the place where we feel we are in excellent hands.

I do hope for all of you who have shown kindness and interest in Mitch that you are doing well. I especially want the Weggies in the southeast to know there IS a place to go.
Danell

Palmyra
03-27-2011, 01:13 PM
Peaceful thoughts to you Danell, and all the best wishes for Mitch. He is lucky to have a strong advocate by his side, and you seem to be managing this site very well indeed. I am pleased for you to have found a doctor and facility in which you have confidence. That said, I will share that as a long term caregiver, the experience of helping someone you are close to make major medical decisions is very difficult, and has a stress that has been unmatched in my experience.

I found my online connections to be invaluable when early in diagnosis and treatment for my daughter. I would come back to our hotel while at the Mayo Clinic and feverishly post questions and concerns to a similar online support group, and found many words of wisdom, comfort and support. Keep that in mind while undergoing treatment, and best wishes to you both!

Mitch
03-27-2011, 01:39 PM
I feel overwhelmed at this moment by your kindness, Palmyra. We have so many good friends here in this small town who help us so very much; however, these kind folks don't know what we're going through. Mitch made the comment at one point in time that he would rather have cancer. He said that at least the doctors and he would know what they were dealing with.
This site...being able to discuss this insidious disease with those who have been there or who have loved ones who live with this has been a true blessing.
I wish the very best for you and your daughter. I'll even send my phone# if you want to talk. Just let me know. Thank you.

Palmyra
03-27-2011, 02:11 PM
Hey Danell,
You will find that this disease is rare...meaning none of your friends have had it, and you had certainly never heard of it before. Every time I go to my hair dresser or try to explain to a neighbor about what my daughter is dealing with, they stare at me like, "Uhh, what?" But the good news is you do have a diagnosis, and now have a means to treatment.

The really good news is all the fine people on this site. They are all survivors, and most are doing really, really well considering. This community has learned so much about this condition in the last 10 years, I have great hope for the future. Yes, it is scarey at first, but look at all the wonderful, smart folks here. Knowledge is power. Learn and not be afraid. Time helps too, unfortunately it 'takes time' :wink1:

Sweet dreams! (You are up late on the East coast, that is the mother in me talking :-) Sent me a note, we can chat anytime!

Mitch
03-27-2011, 02:30 PM
Thanks so much, Palmyra. Yes, I have tried to make myself as knowledgable on the subject as possible. In fact, I began questioning the doctors, and, needless to say, some became quite irritated. HA! (I really didn't care, however; I just wanted answers, which now, I understand, they didn't have.) I'm learning that there are not always clear-cut answers with this crazy stuff.

Yes, let's do stay in touch. And we both worry, as all mothers and wives would do.

BTW, I'm a night owl. Sleep late in the am. Retired school teacher. Have served my many years of getting up against my will at 6:00, so I just do my own unstructured, natural thing now.

Thanks again.
Danell (and that's my real name...no pseudonyms)

Daggar
03-28-2011, 01:41 PM
....I cannot imagine what you must be going through. I truly wish there were some way I could help. I'm trying to think here. Can you get Holly help through any type of social service? Have you tried this? This would give you some time alone, maybe. This **** will leave the caregiver in all kinds of emotional crap. I'm still in it...you're for sure in it. The only thing that has helped me was finding the right doctor, which happened 3 days ago. I felt like I was carrying everything on my shoulders. I poured out my frustration online. Had no where else to go. So that's what you do....dear man. Hang in there...get the right doctor....Holly will eventually be fine...and you will be also.

Hey Danell... awesome that you've found a doctor that works well with you and Mitch -- that's so important!! Holly is doing well and we're working through all of the difficulties that WG presents. We do have a strong "family and friend" network and the doctors have been great as well. I may come across like we're struggling at times but I do feel that there are certain things that you just can't communicate to folks who have not been through it or are going through it. This site has been a great place to vent and gain knowledge from those on the frontline .... who are living it on a daily basis. Hope you receive the care you require and wish Mitch all the best for us!!