Going MIA

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LPBeier said:
CG. I finally got that dose of good luck! Because of all the asthma attacks, pneumonia, and bronchitis I have been having, I was sent to a new respirologist out here. She started from scratch and ordered every blood test and scan there is. On our second visit, she told me that I tested low for immunoglobulins and apparently it has been that way from birth. So it took 61 years but I finally have a diagnosis for all my infections, fatigue and shortness of breath. I do an infusion once a week. I was trained by a nurse who specializes in this kind of treatment. She showed me how to do it myself and I am getting better at it. I will be doing it for life but hopefully, I will have the energy to do the things I want.
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Outstanding news!
 
LPBeier said:
CG. I finally got that dose of good luck! Because of all the asthma attacks, pneumonia, and bronchitis I have been having, I was sent to a new respirologist out here. She started from scratch and ordered every blood test and scan there is. On our second visit, she told me that I tested low for immunoglobulins and apparently it has been that way from birth. So it took 61 years but I finally have a diagnosis for all my infections, fatigue and shortness of breath. I do an infusion once a week. I was trained by a nurse who specializes in this kind of treatment. She showed me how to do it myself and I am getting better at it. I will be doing it for life but hopefully, I will have the energy to do the things I want.
Click to expand...
That's wonderful, LP! What a relief it is to finally have an accurate diagnosis *and* effective treatment. I'm so happy for you.

Do you mind if I ask you what the medication is?
 
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LPBeier said:
CG. I finally got that dose of good luck! Because of all the asthma attacks, pneumonia, and bronchitis I have been having, I was sent to a new respirologist out here. She started from scratch and ordered every blood test and scan there is. On our second visit, she told me that I tested low for immunoglobulins and apparently it has been that way from birth. So it took 61 years but I finally have a diagnosis for all my infections, fatigue and shortness of breath. I do an infusion once a week. I was trained by a nurse who specializes in this kind of treatment. She showed me how to do it myself and I am getting better at it. I will be doing it for life but hopefully, I will have the energy to do the things I want.
Click to expand...
That’s wonderful and I bet a relief to finally know!
 
I remember that he had a bout with cancer also GG. Dang, I hope Casey is ok.
I'm also really concerned about some others too, like Tenspeed. He was headed to Venice the last we heard from him on post number #2565, and that was 4 months ago.
I sure hope Kgirl comes out to play soon..I miss her.
 
Its a shame that, as much as we enjoy many members, we don't make certain there is a way to make contact beyond the forum itself..

In another food forum I used to follow, a few of us kept in contact after it closed.. Not close friends but just interested in health, family, etc.

I often think of K-Girl, Joel, tenspeed and others.. Now cd is added to those missing persons..

Ross
 
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Just Cooking said:
Its a shame that, as much as we enjoy many members, we don't make certain there is a way to make contact beyond the forum itself..

In another food forum I used to follow, a few of us kept in contact after it closed.. Not close friends but just interested in health, family, etc.

I often think of K-Girl, Joel, tenspeed and others.. Now cd is added to those missing persons..

Ross
Click to expand...
There sort of is a way to let forum members contact you outside the forum, by email. I just enabled it from the User CP. It doesn't show your email. I'm pretty sure that the person using it doesn't get to see your email. But, it does mean that you can receive email from people here, even if you don't get a chance to check in. It shows up on the contact tab of the user profile.
 
Just Cooking said:
That's interesting, taxlady.. I'm assuming that they must be on your "friend" list..

Thank you.. :)

Ross
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I didn't see a place to choose that option for this. I checked from a "private browsing window" and didn't see the option to email me. Maybe it's friends only and maybe it's members only. Do you mind checking my profile so we know?
 
Kayelle said:
...I sure hope Kgirl comes out to play soon..I miss her.
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K-Girl and I are Facebook friends; she posted something earlier this week, so at least we know she's still alive! I miss her hanging around here, too. casey had sent me his business cell phone number when he was in the Rhode Island area a while ago, thinking that there would have been a chance for us to meet up. That never happened, but I did just send him a text now to see if he's alive and kicking. I hope all the other missing people are fine, too.

Just Cooking said:
Its a shame that, as much as we enjoy many members, we don't make certain there is a way to make contact beyond the forum itself...
Click to expand...
There isn't any rule against making a personal connection with someone off the DC platform. ;) I've made off-board friendship connections with a number of DC members, exchanging personal email addresses, maybe phone numbers and home addresses, too. Himself and I have even met up with tinlizzie and Got Garlic (and her DH) in Real Life. It's quite a kick to meet people face-to-face after you have this mental image about them. In our case, it's been all good.
 
taxlady said:
I didn't see a place to choose that option for this. I checked from a "private browsing window" and didn't see the option to email me. Maybe it's friends only and maybe it's members only. Do you mind checking my profile so we know?
Click to expand...

OK... I guess I was looking at a different window.. I see, in your profile and in my profile, a "contact" window which gives the option to send an email.. I'm going to find cd's profile and see if that option is there..

Pretty cool..

Edit... No email option on cd's profile.. :(

Ross
 
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LPBeier said:
CG. I finally got that dose of good luck! Because of all the asthma attacks, pneumonia, and bronchitis I have been having, I was sent to a new respirologist out here. She started from scratch and ordered every blood test and scan there is. On our second visit, she told me that I tested low for immunoglobulins and apparently it has been that way from birth. So it took 61 years but I finally have a diagnosis for all my infections, fatigue and shortness of breath. I do an infusion once a week. I was trained by a nurse who specializes in this kind of treatment. She showed me how to do it myself and I am getting better at it. I will be doing it for life but hopefully, I will have the energy to do the things I want.
Click to expand...

Well, the good news turned into a Stephen King story. I felt good for about 2 weeks then got even more fatigued than normal, slept most of each day, couldn't eat and when I did I lost it shortly after. I "missed Christmas" and could barely take Miley out to do her business.

This lasted 2 1/2 months until I went off it and then I had two weeks of withdrawal. When my doctor was back we decided to try another one and it is working like a charm! It only took two weeks to get started and there are no nasty side effects. The new med is "Hizentra".

To make this fit the MIA title, this is the reason I haven't been around since I let you know things were going to get better...it took a little longer than expected.
 
LPBeier said:
Well, the good news turned into a Stephen King story. I felt good for about 2 weeks then got even more fatigued than normal, slept most of each day, couldn't eat and when I did I lost it shortly after. I "missed Christmas" and could barely take Miley out to do her business.

This lasted 2 1/2 months until I went off it and then I had two weeks of withdrawal. When my doctor was back we decided to try another one and it is working like a charm! It only took two weeks to get started and there are no nasty side effects. The new med is "Hizentra".

To make this fit the MIA title, this is the reason I haven't been around since I let you know things were going to get better...it took a little longer than expected.
Click to expand...

So happy for this good news, LP!!!!
 
LPBeier said:
Well, the good news turned into a Stephen King story. I felt good for about 2 weeks then got even more fatigued than normal...To make this fit the MIA title, this is the reason I haven't been around since I let you know things were going to get better...it took a little longer than expected.
Click to expand...
Well dayumn, Lydia, that sure was lousy about sleeping through the holidays. I hope the new meds you're taking now work for more than two weeks. Continued good luck in your quest for good health - or at least for not feeling lousy. Sometimes middling is all we can hope for some days, right? ;)
 
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