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Some good things come out of ITP :) 10 years 8 months ago #23642

  • rachaely
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Hi :)

Thought I'd share one of the (very) few positive things that ITP has done for me ...

Almost exactly 3 years ago, I met someone called Neil at the local indoor climbing wall here in Glasgow, part of a group of us who climbed together on an informal basis. A few months later, I was diagnosed with ITP, and obviously my doctors gave me strict instructions not to do anything dangerous, so climbing was obviously out! So, I texted my climbing buddies to tell them I'd be out of circulation for a while, and they all replied with commiserations and wishes for a speedy return to the other end of a rope :) Neil, however, kept in touch much more regularly, and was immensely supportive - during my first month of prednisolone (75mg per day) when I had severe insomnia, he once came round at 3 a.m. armed with his sister's wedding DVD and the DVD of a skydive he'd done, thinking that watching these would put me to sleep in no time! Needless to say, I watched them both to the end while he dozed ...

He was an incredible friend to me as I was tapering off the pred, and fondly remembers a night in a pub where I had one small beer and reached new levels of euphoric tangential conversation, accompanied by exaggerated arm gestures that entertained the whole pub, unbeknownst to me! Anyway, to cut a long story short, we started going out together in October 2009, and managed to get through the first few tentative month of a new relationship despite the joint pain and hair loss I had from the prednisolone. I then had 18 months remission, during which time we moved in to a new house together (September 2010), so he then got to witness my second course of prednisolone and the associated mood swings and side effects up close and personal when I relapsed in April last year. Again, the levels of support and patience he's shown have been unstinting and unconditional - he talks about "our platelet count" and "our treatment" without realising he's doing it, maybe because he's only really got to know me since I got ITP and it's part of me. Well, part of us :)

So, given a choice between option 1 (no ITP and no Neil) or option 2 (ITP and Neil) - well, no decision to be made, there, option 2 every time!

I said at the start of this that there were a few positives (plural) and I think that apart from bringing me and Neil together, I've got a whole new perspective on life, and an increased awareness on the support people give and receive. This site has been a big part of that, even though I only discovered it a couple of months ago so I wanted to share some positivity with everyone on here :)

Thanks to everyone for sharing their experiences and thoughts, it's like having friends who instantly "get" each other :)

Rachael
The following user(s) said Thank You: marydhondt

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Re: Some good things come out of ITP :) 10 years 8 months ago #23646

  • eklein
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I love how he brought over the wedding and sky dive dvds - that's how you know he is a keeper! My s.o. brought me a folding table and chair because I had zero furniture - who needs flowers, bring us something useful!
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: Some good things come out of ITP :) 10 years 8 months ago #23654

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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LOVED that story! I'm so glad you found a positive spin!

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Re: Some good things come out of ITP :) 10 years 8 months ago #23663

  • milly
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That was the BEST story, what a fantastic guy you have there. Good luck for the future!!
There is no practice run in life.

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Re: Some good things come out of ITP :) 10 years 8 months ago #23665

  • alisonp
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Thats very sweet Rachael - he sounds like a really good bloke! Its definitely worth thinking about ITP positives from time to time. I've got a whole list that I remind myself of on days that aren't so great.

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Re: Some good things come out of ITP :) 10 years 6 months ago #24645

  • markhudson
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Sounds like you have found your counter point :). Sometimes it takes rough seas for you to find out who will stick with you. Its always good to hear about someone finding happiness :)

Hope you have a long happy and great future together

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Re: Some good things come out of ITP :) 10 years 6 months ago #24966

  • Don
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That has to be the best thing Ive ever heard relating to ITP.

Congrats !!

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Some good things come out of ITP :) 9 years 2 weeks ago #38074

  • Nsteel
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A wee update to this thread,
4 weeks ago I proposed to Rachael.
And she said yes!!! :) :) :) :)
The following user(s) said Thank You: Sandi

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Some good things come out of ITP :) 9 years 2 weeks ago #38078

  • CindyL
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Congratulations! When's the big day?

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Some good things come out of ITP :) 9 years 2 weeks ago #38080

  • openhanded
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Congrats to you both!
Diagnosed: August 2013, lowest count 2k.
Treatments: IVIG, Prednisone, transfusions.
Current Count: 233k, 12/23/2013.
Currently: Watching/waiting.

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Some good things come out of ITP :) 9 years 2 weeks ago #38086

  • Winnifred
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Beautiful story! Sounds like you two were meant to be! Congratulations.



and since no one asked I will does he have a twin?? hehehehe

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Some good things come out of ITP :) 9 years 2 weeks ago #38099

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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That is such wonderful news! Congratulations!

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Some good things come out of ITP :) 9 years 2 weeks ago #38110

  • jeffrey71
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Hi :)

Thought I'd share one of the (very) few positive things that ITP has done for me ...

Almost exactly 3 years ago, I met someone called Neil at the local indoor climbing wall here in Glasgow, part of a group of us who climbed together on an informal basis. A few months later, I was diagnosed with ITP, and obviously my doctors gave me strict instructions not to do anything dangerous, so climbing was obviously out! So, I texted my climbing buddies to tell them I'd be out of circulation for a while, and they all replied with commiserations and wishes for a speedy return to the other end of a rope :) Neil, however, kept in touch much more regularly, and was immensely supportive - during my first month of prednisolone (75mg per day) when I had severe insomnia, he once came round at 3 a.m. armed with his sister's wedding DVD and the DVD of a skydive he'd done, thinking that watching these would put me to sleep in no time! Needless to say, I watched them both to the end while he dozed ...

He was an incredible friend to me as I was tapering off the pred, and fondly remembers a night in a pub where I had one small beer and reached new levels of euphoric tangential conversation, accompanied by exaggerated arm gestures that entertained the whole pub, unbeknownst to me! Anyway, to cut a long story short, we started going out together in October 2009, and managed to get through the first few tentative month of a new relationship despite the joint pain and hair loss I had from the prednisolone. I then had 18 months remission, during which time we moved in to a new house together (September 2010), so he then got to witness my second course of prednisolone and the associated mood swings and side effects up close and personal when I relapsed in April last year. Again, the levels of support and patience he's shown have been unstinting and unconditional - he talks about "our platelet count" and "our treatment" without realising he's doing it, maybe because he's only really got to know me since I got ITP and it's part of me. Well, part of us :)

So, given a choice between option 1 (no ITP and no Neil) or option 2 (ITP and Neil) - well, no decision to be made, there, option 2 every time!

I said at the start of this that there were a few positives (plural) and I think that apart from bringing me and Neil together, I've got a whole new perspective on life, and an increased awareness on the support people give and receive. This site has been a big part of that, even though I only discovered it a couple of months ago so I wanted to share some positivity with everyone on here :)

Thanks to everyone for sharing their experiences and thoughts, it's like having friends who instantly "get" each other :)

Rachael


As I read this I got something in both my eyes...I did not know that ITP would make your eyes water. I gotta read more!

Jeff

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Some good things come out of ITP :) 9 years 2 weeks ago #38111

  • jeffrey71
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When is the big day?

Congratulations to you both!

Jeff B) (just to cover the eyes a bit)

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Some good things come out of ITP :) 9 years 2 weeks ago #38140

  • rachaely
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Not got as far as organising the wedding yet, still getting used to being engaged :) was a total surprise for me but I guess Neil's had longer to get used to the idea, what with designing and organising the rings and all! It was his 30th birthday a couple of weeks ago so he just managed to get engaged in his 20s :)

So far, we have managed to make a start on the short list for most inappropriate songs for a first dance, just have to be careful that the older generation doesn't suffer a group coronary!

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Some good things come out of ITP :) 9 years 2 weeks ago #38141

  • rachaely
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Reply to winnifred's question about Neil having a twin, he's definitely a one off, sorry!

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Some good things come out of ITP :) 9 years 2 weeks ago #38143

  • Melinda
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Man I love a happy ending - my best wishes to you both Rachael and Neil, you two have a bright future ahead of you!

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Some good things come out of ITP :) 9 years 2 weeks ago #38152

  • Winnifred
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The one good thing I got from my mom is it never hurts to ask! That said even if he had a twin too young for me lol

I just love reading stories like yours Not because you have ITP but because of the romance and love behind it!

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Some good things come out of ITP :) 9 years 3 days ago #38450

  • Christine
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What a great story to tell your grandkids. Hopefully by that time ITP will be in the medical history books!!

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Some good things come out of ITP :) 6 years 2 months ago #55532

  • Nsteel
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27th August 2016, we finally tied the knot (quite literally as it happens) at a lovely remote venue on the Eastern side of Scotland.




Attachments:

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Some good things come out of ITP :) 6 years 2 months ago #55534

  • alisonp
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Congratulations! Great photos too.

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Some good things come out of ITP :) 6 years 2 months ago #55535

  • Melinda
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Rachael and Neil you are a beautiful couple in more ways than one! Thank you so much for sharing the photos of your very special day! Congratulations to you, may you have a long and happy life together filled with many blessings!

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Some good things come out of ITP :) 6 years 2 months ago #55542

  • CindyL
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Congratulations! Awesome photos! Wishing you both a long and happy life together!

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Some good things come out of ITP :) 6 years 2 months ago #55546

  • rachaely
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Rachael here - we had a brilliant day, and as you can see from the pictures, the sun made a rare appearance in Scotland!

And in ITP news, I was officially declared as being in remission 2 weeks before the wedding, after 15 months on romiplostim - talk about good timing!

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Some good things come out of ITP :) 6 years 2 months ago #55548

  • Melinda
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More great news Rachael! Congrats!

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Some good things come out of ITP :) 6 years 2 months ago #55551

  • Winnifred
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Congratulations beautiful pictures and I have to say I like the colours of his Tartan (sorry if my spelling is off)

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Some good things come out of ITP :) 6 years 2 months ago #55563

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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Congrats!!

May you have MANY happy years together!! and may ITP stay at bay for you!!

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Some good things come out of ITP :) 6 years 2 months ago #55564

  • Winnifred
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I just noticed you had a hand fasting ceremony! Very cool that is what my daughter wanted at her wedding.


Do you do the traditional questions? At my daughters wedding The groom asked if the bride would be burried with his people. and The bride asked the groom if he would hang his laundry with hers.

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Some good things come out of ITP :) 6 years 2 months ago #55565

  • Nsteel
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There was no pre-emptive funeral arrangements or hanging of under garments mentioned during the service :)
It was a Humanist service, so we got to say pretty much whatever we wanted. The hand fasting, and tying of the knot was done in the traditional Scottish sense - my ribbon was the Sutherland tartan, and Rachael's was a coral pink ribbon to match her sash (she's English so doesn't have a clan tartan!) There was also a quaich, a Scottish sharing cup, which the fathers each added whisky to, passed between us and then around all the guests - it didn't last long!

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Some good things come out of ITP :) 6 years 2 months ago #55648

  • wquine
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Lovely read and best of luck to happy couple and your long life together :)

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