Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Some good things come out of ITP :)

More
13 years 6 months ago #23642 by rachaely
Some good things come out of ITP :) was created by rachaely
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
More
13 years 6 months ago #23646 by eklein
Replied by eklein on topic Re: Some good things come out of ITP :)
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
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
13 years 6 months ago #23654 by Sandi
Replied by Sandi on topic Re: Some good things come out of ITP :)
LOVED that story! I'm so glad you found a positive spin!
More
13 years 6 months ago #23663 by milly
Replied by milly on topic Re: Some good things come out of ITP :)
That was the BEST story, what a fantastic guy you have there. Good luck for the future!!

There is no practice run in life.
More
13 years 6 months ago #23665 by alisonp
Replied by alisonp on topic Re: Some good things come out of ITP :)
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.
More
13 years 4 months ago #24645 by markhudson
Replied by markhudson on topic Re: Some good things come out of ITP :)
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
More
13 years 4 months ago #24966 by Don
Replied by Don on topic Re: Some good things come out of ITP :)
That has to be the best thing Ive ever heard relating to ITP.

Congrats !!
More
11 years 10 months ago #38074 by Nsteel
Replied by Nsteel on topic Some good things come out of ITP :)
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
More
11 years 10 months ago #38078 by CindyL
Replied by CindyL on topic Some good things come out of ITP :)
Congratulations! When's the big day?
More
11 years 10 months ago #38080 by openhanded
Replied by openhanded on topic Some good things come out of ITP :)
Congrats to you both!

Diagnosed: August 2013, lowest count 2k.
Treatments: IVIG, Prednisone, transfusions.
Current Count: 233k, 12/23/2013.
Currently: Watching/waiting.
More
11 years 10 months ago #38086 by Winnifred
Replied by Winnifred on topic Some good things come out of ITP :)
Beautiful story! Sounds like you two were meant to be! Congratulations.



and since no one asked I will does he have a twin?? hehehehe
  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
11 years 10 months ago #38099 by dru
Replied by dru on topic Some good things come out of ITP :)
That is such wonderful news! Congratulations!
More
11 years 10 months ago #38110 by jeffrey71
Replied by jeffrey71 on topic Some good things come out of ITP :)

rachaely wrote: 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
More
11 years 10 months ago #38111 by jeffrey71
Replied by jeffrey71 on topic Some good things come out of ITP :)
When is the big day?

Congratulations to you both!

Jeff B) (just to cover the eyes a bit)
More
11 years 10 months ago #38140 by rachaely
Replied by rachaely on topic Some good things come out of ITP :)
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!
More
11 years 10 months ago - 11 years 10 months ago #38141 by rachaely
Replied by rachaely on topic Some good things come out of ITP :)
Reply to winnifred's question about Neil having a twin, he's definitely a one off, sorry!
11 years 10 months ago #38143 by
Man I love a happy ending - my best wishes to you both Rachael and Neil, you two have a bright future ahead of you!
More
11 years 10 months ago #38152 by Winnifred
Replied by Winnifred on topic Some good things come out of ITP :)
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!
More
11 years 9 months ago - 11 years 9 months ago #38450 by Christine
Replied by Christine on topic Some good things come out of ITP :)
What a great story to tell your grandkids. Hopefully by that time ITP will be in the medical history books!!
More
9 years 3 weeks ago - 9 years 3 weeks ago #55532 by Nsteel
Replied by Nsteel on topic Some good things come out of ITP :)
27th August 2016, we finally tied the knot (quite literally as it happens) at a lovely remote venue on the Eastern side of Scotland.

This image is hidden for guests.
Please log in or register to see it.


This image is hidden for guests.
Please log in or register to see it.

This image is hidden for guests.
Please log in or register to see it.
More
9 years 3 weeks ago #55534 by alisonp
Replied by alisonp on topic Some good things come out of ITP :)
Congratulations! Great photos too.
9 years 3 weeks ago #55535 by
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!
More
9 years 3 weeks ago #55542 by CindyL
Replied by CindyL on topic Some good things come out of ITP :)
Congratulations! Awesome photos! Wishing you both a long and happy life together!
More
9 years 3 weeks ago #55546 by rachaely
Replied by rachaely on topic Some good things come out of ITP :)
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!
9 years 3 weeks ago #55548 by
More great news Rachael! Congrats!
More
9 years 3 weeks ago #55551 by Winnifred
Replied by Winnifred on topic Some good things come out of ITP :)
Congratulations beautiful pictures and I have to say I like the colours of his Tartan (sorry if my spelling is off)
  • CindyAnn
  • Offline
  • 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
More
9 years 3 weeks ago - 9 years 3 weeks ago #55563 by CindyAnn
Replied by CindyAnn on topic Some good things come out of ITP :)
Congrats!!

May you have MANY happy years together!! and may ITP stay at bay for you!!
More
9 years 3 weeks ago #55564 by Winnifred
Replied by Winnifred on topic Some good things come out of ITP :)
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.
More
9 years 3 weeks ago #55565 by Nsteel
Replied by Nsteel on topic Some good things come out of ITP :)
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!
More
9 years 2 weeks ago #55648 by wquine
Replied by wquine on topic Some good things come out of ITP :)
Lovely read and best of luck to happy couple and your long life together :)