Caregivers

[Sangye]

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]

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]

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.

[Mitch]

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]

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]

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]

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]

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]

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'

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]

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)