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Back from Seattle


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#1 susieq40

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Posted 15 August 2009 - 03:23 PM

Hey everyone. What a trip. My sister drove the whole way..it was a very interesting drive...We caught up like we hadn't seen each other in years..She works all day and I have all the kids...so we don't get much time to spend with each other and just have girl talk. We arrived at about 4pm and found our Hotel. Thank goodness she used Mapquest to get directions to everywhere we needed to go or we would have been lost for years...lol. We checked in and headed to dinner. Then we tried to get on the internet and without success, just headed to bed. Got up and had breakfast, It was raining so we went shopping for jackets, when we left Montana it was nice, Washington was so gloomy and stormy. But we tried to enjoy ourselves anyway. Buy the time we got jackets, road the monorail, it was time to leave for my appointment. The doctor was very informative..He had a thick accent, so his assistant would repeat things he said. They think I also have the skin type of Sclero...but doing tests and won't know much til next week. He looked me over really well, couldn't really recommend a treatment cause he didn't have the films that were suppose to be sent with the records...but had a print out..So he told me since my lungs are so bad, just follow what the pulmonologist wants to do..which is cytoxin..I feel better after seeing him, but still a little scared, But he also thinks I've had this for years at least since I was 25 or younger. All the other symptoms..like reflux, and bowel trouble, then the pain in the joints and stuff, I've been sick most of my life from one thing or another. They would have probably put me on methotrexate anyway, to treat the joints and pain..but now with the lungs, have to choose a different path.
After the appointment..my sister mentioned she had no idea what I was going through and had a much better idea of the situation. I was so glad she was there with me. We went to dinner and saw there was a sailboat ride for just $25 each..I said we had to do it...because we would be leaving in the morning..So we did a rush dinner and took a boat ride, the skies had cleared up so it was so beautiful! Afterwards, I was totally exhausted, and we headed back to the hotel and crashed. We woke in the morning and my sister had decided to go next door to have her car checked, it was making a horrible noise after we had gotten to Seattle. It turned out it was the breaks, and was gonna cost her $750-so she wasn't up to do much else, and they couldn't get to it til 10 and would be done at 2. So I wanted to go see the orca whales, but turned out we'd have to stay another night. couldn't really swing it anyway, but it's been a dream of mine...but all the sudden the day before hit me and I was exhausted. So she went to the market with her daughters mother-in-law, while I slept for 2 hrs or so...turns out I really needed the sleep. We ended up driving to Spokane got there about 8 or so, then drove the rest of the way the next day. Which was a better way to go..breaking it up like that. Got home at about 4pm. layed down til 7. and well
The next day I had a appointment in Bozeman with the pulmonologist for a lung function test, riding the bike with a hose in my mouth with my nose plugged..The doctor pushed and pushed me to keep going...I was exhausted!! Drove home and slept again..2 hr each way.
So today I'm recovering from all the driving, and paying attention to the kids..trying to..
Anyway so glad I got someone to watch the baby separate from the other kids..worked out great! Well, will update more when I have results...Hugs to everyone!! Thanks so much for the great support! I've needed this site so bad! Thank you Thank you Thank you!!!

#2 debonair susie

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Posted 16 August 2009 - 01:12 PM

Hi susieq40,

I am so glad that you and your sister had a good trip over to Seattle. I'm also happy that the two of you got the opportunity, albeit for your health issues, to get caught up and really enjoy one another without interruption.
Before I go further, I must tell you...I got 2 smiles out of your thread! The first was having time to yourselves and a chance to visit. My sister-in-law and I find the only way we are able to do that...is to go off by ourselves...away from my brother (who loves to talk, hence he's the only one who's doing the talking!lol) The second smile came about your name here on the forum. My folks had a friend who always used to shake his finger at me while calling me "SusieQ". Because I was so very shy, I would run behind my dad's legs to hide from this man! Anyway, I just had to share that with you :D

What a great thread...thanks for sharing with us about your appointment in Seattle. I hope that you begin to feel a bit better, the more you are able find out and once you are able to get help with your pain. It sounds as though you were quite exhausted, for good reason, so I'm really glad you had the opportunities to get that much needed sleep. (I have no children at home any longer, but I don't know how you and so many of the young moms here are able to care for their young families and not be tired ALL of the time! My hat is off to you and them)!

Keep us posted on how you are doing?
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#3 susieq40

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Posted 16 August 2009 - 02:36 PM

Susie,

Thanks so much for your reply..my middle name is sue so my mom has always called me susie or susieq. I can't believe I was able to raise my kids pretty well being undiagnosed all these years...But I guess what we don't know...don't hurt us..? We have 8 kids 3 of which are foster kids one 16, one 5 and one 11 months. Then our other kids are 22, 21, 18, 5, 4. We adopted. They bring a lot of joy to our lives...can't imagine our lives without em... So glad that the worst symtoms have waited til the older kids are off to college. And the younger ones will be kindergarden and preschool. Can't believe that we had our youngest original graduate in june, and now our first adopted starting kindergarden.
Life is crazy! We never know what it's gonna bring..But I am truely blessed with a great family. I am starting to look forward to treatment, cause the pain is getting to me...I hope all will go well...I will keep everyone informed. Hugs!!

#4 debonair susie

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Posted 16 August 2009 - 06:58 PM

Oh MY, susieq! You have your hands alot more full than I even imagined...Kudos to you! :rolleyes:

I will tell you a little "Secret"...I never realized how much pain I had adapted to...until I ended up with pleurisy and was put on a medication. What a difference! I was even able to SLEEP at night!
Plus, when I would get up in the mornings, I was only stiff for the first 3 hours and I rated the pain at a 4, instead of being stiff for most of the day and rating the pain at a 7.
I was so grateful.

Thank you for sharing about your family and we look forward to your having less pain, susieq!
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#5 Sweet

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Posted 17 August 2009 - 08:40 AM

Hi,

So glad you feel better after seeing him. Sounds like you and your sister had a great time!
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#6 Jeannie McClelland

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Posted 18 August 2009 - 05:21 AM

Hey SusieQ,

I loved reading your post - I've always wanted to go to Seattle and I kind of felt like I was riding along! Your description of the trip sounded so familiar, what with having to shop for jackets and the brakes going out.

I hope the cytoxin works well for you and also that someday you get to make a 'fun only' trip and see the orcas.

Warmest wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
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International Scleroderma Network

#7 smac0719

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Posted 18 August 2009 - 01:31 PM

SusieQ,

I am glad to hear that you had a good appointment. I travel a distance to see my Sclero specialist and it does make the trip much more enjoyable when you spend it with good conversation and get to do some fun things as well. Best wishes with your results and course of treatment for your lungs.
I may have Scleroderma, but Scleroderma doesn't have me!

#8 Shelley Ensz

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Posted 19 August 2009 - 02:22 AM

Hi SusieQ,

I'm really glad you had a good appointment. And to think, you got a "Mom Vacation" on top of it all! :rolleyes:
Warm Hugs,

Shelley Ensz
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