What's new with vdub

[vdub]

A lot has transpired in the past 8 months.

As most of you know, we try to RV around the country most of the winter months. We were able to go all the way over to Cape Canaveral last December and grabbed a cruise to the Virgin Islands. VI Nat'l Park was one of the few national parks that we hadn't seen and it is highly recommended. Shortly after getting back from the cruise, I kept feeling very tired and was sleeping more and more and lacking ambition (more than usual :-)).

We generally headed in a direction back to the northwest and after hitting NM, my health had gone south more than I liked, so I decided to turn the RV north, despite the snow, and head home to the Pacific Northwest.

By the time we got home in mid-Feb, I was really dragging. I discussed the issue with all of my docs except my rheumy. My endo is my primary life-saver, so I didn't even think of the rheumy. Most of my issues come from the lack of a pit and not the fact that I have wegs. But, being tired persisted and I was at one point sleeping as much as 18 hrs a day.

Finally, for a totally different reason (split tooth and infection), my endo put me on super doses of steroids around May and I snapped out of the deep sleep. Around this same time, I had a routine apt with my rheumy. After discussing what was going on, he said, "oh, you're having a flare". Now I know what a flare is like -- at least for me. The increase in steroids, popped me out of it.

Once out of the "SnowWhite deep sleep" and once stabilized, I decided it was a good time to have my thyroid removed.

My thyroid has been useless to me ever since the removal of my pituitary due to wegs. Since the thyroid was "weird" (large and had nodules), it was a constant concern for cancer. Plus, I am a "down winder" -- one of those lucky few who grew up in the radiation clouds from Nevada testing and Hanford plutonium production, so thyroid issues are common in this area. So anyway, the thryroid was removed about a week ago and I'm doing fine. I have nice new scar on my neck that reminds me of Clint Eastwood in Hang'em High.


Little daughter is still in Afghanistan. She's relatively safe, but has been involved in a couple rocket attacks and fire fights. She spends most of her time flying around in Afghan, Russian-made helicopters from one location to another. She has seen more of Afghanistan than most Afghans. Five more months and she'll be home and I'll get to change my avatar to something better than a war-zone service star.

[andrew]

Wowsers you've been through the mill! Very happy you're doing better now though. May your daughter stay safe too!!!

Welcome back!

[pberggren1]

And......you might be meeting up with Batman soon.

[vdub]

Banking on it. I think we'll get the rv out of storage this week.

[pberggren1]

Sweet!!!!!!

[mishb]

I'm glad that everything turned out well, in the end, vdub

So where do you take the RV during the summer months - or is that when you finally manage to stay put at home

[vdub]

Usually we stay home during the summer to avoid the "school vacation crowds", but sometimes we do a short trip to BC/AB or WA/OR. This year it looks like were going to go over to MT/WY and meet up with Batman in Helena and then go on to Yellowstone Nat'l Park, Grand Tetons Nat'l Park, and then Craters of the Moon Nat'l Monument, then home. Should be fun -- about 1,400 miles total. Normally, we will travel 300-350 miles in a day and then stop for a couple days for sight-seeing. We don't move very fast or very far -- that helps keep the fuel expense lower. Sometimes we will stay in a place for as long as a month, but not very often -- usually, we only stay a week or two before moving on.

We enjoy each other's company and like traveling alone, so almost always it's just the two of us. The wife has had to take me to various hospital ER's on many occasions and you can not imagine how many times and at how many different places I've had blood draws done, but we keep pressing on....

[HopeinTN]

It's great to hear from you and glad you are feeling better!

[Debbie C]

Glad you had a safe trip and next time you'll know when you are starting to flare. You should take extra steroids on your travels in case it happens again. How great it is that you and your wife are able to enjoy the traveling ( and each other !!! ) Hope your daughter stays safe and and comes home soon....Take care

[Alysia]

Hi Vdub,
Im relatively new here, so I didn't "meet" you yet.
I just wanted to say that I find it amazing and encouraging that you can do these trips, while having WG :thumbup:
I hope your daughter is safe. what is she doing there ?

[vdub]

She is assigned to NATO and lives on a small French base. I guess her high school and college French is coming in quite handy.... :-)

[pberggren1]

Good morning. I am getting anxious for our meeting.

[vdub]

Yeah! Me too!

Hey, great thing happened last night! Daughter flew in during the middle of the night! She is still asleep at the moment. She'll be here for a couple days and then back to the war, but at least I'll get a few days with her.

[pberggren1]

That is so great. I wish she did not have to go back. World War 3 will be breaking out soon. It is very scary.

[renidrag]

Good to see you back vdub and glad the surgery went well. So happy your little girl could come home for a few. I sweated a few times when my son was in the Marines. Right between the two Iraq wars. Thank you and your daughter for your service. When does the meeting happen? Take pictures.
Dale

[HopeinTN]

I want to meet too! Dang, I'm never in the right place. Enjoy your meeting and yes, send pics!

[Alysia]

She is assigned to NATO and lives on a small French base. I guess her high school and college French is coming in quite handy.... :-)

brave girl, and brave parents :thumbup:
my big son is in the army, when he first got there in last December I became so sick...

[Barbara N]

A lot has transpired in the past 8 months.

As most of you know, we try to RV around the country most of the winter months. We were able to go all the way over to Cape Canaveral last December and grabbed a cruise to the Virgin Islands. VI Nat'l Park was one of the few national parks that we hadn't seen and it is highly recommended. Shortly after getting back from the cruise, I kept feeling very tired and was sleeping more and more and lacking ambition (more than usual :-)).

We generally headed in a direction back to the northwest and after hitting NM, my health had gone south more than I liked, so I decided to turn the RV north, despite the snow, and head home to the Pacific Northwest.

By the time we got home in mid-Feb, I was really dragging. I discussed the issue with all of my docs except my rheumy. My endo is my primary life-saver, so I didn't even think of the rheumy. Most of my issues come from the lack of a pit and not the fact that I have wegs. But, being tired persisted and I was at one point sleeping as much as 18 hrs a day.

Finally, for a totally different reason (split tooth and infection), my endo put me on super doses of steroids around May and I snapped out of the deep sleep. Around this same time, I had a routine apt with my rheumy. After discussing what was going on, he said, "oh, you're having a flare". Now I know what a flare is like -- at least for me. The increase in steroids, popped me out of it.

Once out of the "SnowWhite deep sleep" and once stabilized, I decided it was a good time to have my thyroid removed.

My thyroid has been useless to me ever since the removal of my pituitary due to wegs. Since the thyroid was "weird" (large and had nodules), it was a constant concern for cancer. Plus, I am a "down winder" -- one of those lucky few who grew up in the radiation clouds from Nevada testing and Hanford plutonium production, so thyroid issues are common in this area. So anyway, the thryroid was removed about a week ago and I'm doing fine. I have nice new scar on my neck that reminds me of Clint Eastwood in Hang'em High.

Little daughter is still in Afghanistan. She's relatively safe, but has been involved in a couple rocket attacks and fire fights. She spends most of her time flying around in Afghan, Russian-made helicopters from one location to another. She has seen more of Afghanistan than most Afghans. Five more months and she'll be home and I'll get to change my avatar to something better than a war-zone service star.

About your thyroid. When I started this latest flare my hands looked like they had been put in a pot of oil. All the doctors did was give me expensive creams and anti-istory but you scared me with the RV. I thought it was a new disease not a vehicle. It will be wonderful to have your daughter home, I finally got an appt with my country doctor and he said the only solution was to go back on prednesone at least until my hands and skin cleared up plus my kidney levels weren't very good. I have been improving ever since and am feeling really well. The thing that concerned me was he said that my thyroid was part of the cause of my hands due to the flare. I have never had thyroid condition before, is the common in WG?I don't know much about what the thyroid does so would appreciate a little help from the gang. Kermit is always thoughtful and kind and had a wonderful little sense of understated humor.

[Dirty Don]

I don't know much about what the thyroid does so would appreciate a little help from the gang.


Thyroid hormones act throughout the body, influencing metabolism, growth and development, and body temperature. During infancy and childhood, adequate thyroid hormone is crucial for brain development.


Anti-TPO antibodies (http://www.webmd.com/a-to-z-guides/thyroid-and-parathyroid-ultrasound): In autoimmune thyroid disease, proteins mistakenly attack the thyroid peroxidase enzyme, which is used by the thyroid to make thyroid hormones.

Wife had hers removed a few years ago due to cancer. It wasn't fun for her, lots of complications, mostly due to the loss of the thyroid and replacement drugs. On the other hand, she feels much better without it! LOL!

[Barbara N]

Wife had hers removed a few years ago due to cancer. It wasn't fun for her, lots of complications, mostly due to the loss of the thyroid and replacement drugs. On the other hand, she feels much better without it! LOL!

Have you heard of it in other WG cases?. How do you know so much about everything? Do you think it has anything to do with this current flare? I tranmslated and gave all of the symposium notes and the notes on the auto immune new investigation( Lenox translated it)) because he want to understand and know what drugs we are using and what is working and what is not. He is working with a specialist friend from the University in Barcalona. Thank you Rebekah for taking such good notes it will help all of us.I told you he was good. He also believes and has kept records of my analysis from my riding therapy including EKG. I know it is Cardio but don't they always say K ? We have been looking into tickets and they range , in lavatory class, from around $500.00 to 1,000.00 in Business .

[Barry Forshaw]

I loved reading about your adventures vdub! It's truly inspiring that you travel so widely despite your Wegener's. I live in the UK but I've been on two driving holidays to the US - once on the east coast and once on the west coast - and they were the best holidays I ever had.

Enjoy your time with your daughter.