Comments on: What a difference a year makes http://blogbitesman.net/2008/05/07/what-a-difference-a-year-makes/ A personal blog about marketing stuff and life stuff. Sat, 20 Feb 2010 07:34:35 +0000 http://wordpress.com/ hourly 1 By: afulford http://blogbitesman.net/2008/05/07/what-a-difference-a-year-makes/#comment-14458 afulford Thu, 05 Mar 2009 13:27:39 +0000 http://blogbitesman.net/?p=157#comment-14458 I read this blog with huge interest and can relate to it totally. My mother came down with Churg Strauss a few years ago and it was an extremely traumatic experience. She also started with various ailments such as asthma, rashes and cramps and got progressively worse and we had no idea what it was (neither did the doctors). It finally got so bad and she was in such severe pain that we had to call 999 (we're in the UK) and an ambulance rushed out. It took 9 specialists to come up with the diagnosis and after treatment she made a recovery. Unfortunately she did suffer some neural damage in her feet, which causes some trouble from time to time, and she still has the asthma but other than that she is back to her normal healthy self. I think the worst part was the not-knowing - watching someone you care about get progressively sicker and not having any explanation or anything you can do to help. I read this blog with huge interest and can relate to it totally. My mother came down with Churg Strauss a few years ago and it was an extremely traumatic experience. She also started with various ailments such as asthma, rashes and cramps and got progressively worse and we had no idea what it was (neither did the doctors). It finally got so bad and she was in such severe pain that we had to call 999 (we’re in the UK) and an ambulance rushed out. It took 9 specialists to come up with the diagnosis and after treatment she made a recovery. Unfortunately she did suffer some neural damage in her feet, which causes some trouble from time to time, and she still has the asthma but other than that she is back to her normal healthy self. I think the worst part was the not-knowing – watching someone you care about get progressively sicker and not having any explanation or anything you can do to help.

]]> By: Elaine http://blogbitesman.net/2008/05/07/what-a-difference-a-year-makes/#comment-14325 Elaine Sat, 24 Jan 2009 18:07:24 +0000 http://blogbitesman.net/?p=157#comment-14325 Hi All, Recently been diagnosed with CSS (Sept 08), been on Cyclophosphamide for 3 months intraveneously as well as Prednisolone (down from 60mg to 15mg to date). Started Azathioprene but am aggressively intolerant to it (severe sickness etc) so am awaiting consultants advice as to what is next. Unless you have this syndrome/disease no one understands the kind of toll it takes on your body and mind. Extreme tiredness, dizziness, heart palpitations (my heart was involved also), the list goes on and on... Although I am determined to be well again. I am in the UK and my health care practitioners are second to none. The Cardio Consultant that I had the good fortune to attend me (Thank God for him) when I was first admitted to hospital, came up with the diagnosis. He saved me from severe internal damage and possibly even death. Its lonely having this condition and Lew, I couldnt agree with you more, health professionals should make more people aware of this disease and the signs and symptoms to look out for. I wish you all continued Good Health because, if you have that, you undeniably have everything! Elaine X Hi All,

Recently been diagnosed with CSS (Sept 08), been on Cyclophosphamide for 3 months intraveneously as well as Prednisolone (down from 60mg to 15mg to date). Started Azathioprene but am aggressively intolerant to it (severe sickness etc) so am awaiting consultants advice as to what is next.

Unless you have this syndrome/disease no one understands the kind of toll it takes on your body and mind. Extreme tiredness, dizziness, heart palpitations (my heart was involved also), the list goes on and on… Although I am determined to be well again.

I am in the UK and my health care practitioners are second to none. The Cardio Consultant that I had the good fortune to attend me (Thank God for him) when I was first admitted to hospital, came up with the diagnosis. He saved me from severe internal damage and possibly even death. Its lonely having this condition and Lew, I couldnt agree with you more, health professionals should make more people aware of this disease and the signs and symptoms to look out for.

I wish you all continued Good Health because, if you have that, you undeniably have everything!

Elaine X

]]> By: bluecollar49 http://blogbitesman.net/2008/05/07/what-a-difference-a-year-makes/#comment-13974 bluecollar49 Tue, 23 Sep 2008 18:42:36 +0000 http://blogbitesman.net/?p=157#comment-13974 Hi John. A positive story, and one that I can relate to...I was diagnosed with CSS back in June, came out of the hospital with 12 different meds and now I'm down to 3 including one for the asthma. Actually just came back from a long delayed (26 years delayed )honeymoon in Maui also. :) I'm on pred and a drug called Immuran, which was a step down from the Cytoxan I was originally prescribed. Anyway, I have started a blog about CSS, because I am finding that most folks are not aware of this disease and I think that people should be made aware that this disease exists and what to look for. Lew Newmark Hi John.

A positive story, and one that I can relate to…I was diagnosed with CSS back in June, came out of the hospital with 12 different meds and now I’m down to 3 including one for the asthma.

Actually just came back from a long delayed (26 years delayed )honeymoon in Maui also. :)

I’m on pred and a drug called Immuran, which was a step down from the Cytoxan I was originally prescribed.

Anyway, I have started a blog about CSS, because I am finding that most folks are not aware of this disease and I think that people should be made aware that this disease exists and what to look for.

Lew Newmark

]]> By: Bruce http://blogbitesman.net/2008/05/07/what-a-difference-a-year-makes/#comment-13658 Bruce Sun, 06 Jul 2008 18:09:50 +0000 http://blogbitesman.net/?p=157#comment-13658 For information and support, see http://www.vasculitisfoundation.org For information and support, see http://www.vasculitisfoundation.org

]]> By: Austin http://blogbitesman.net/2008/05/07/what-a-difference-a-year-makes/#comment-13632 Austin Thu, 19 Jun 2008 22:49:52 +0000 http://blogbitesman.net/?p=157#comment-13632 What an incredible story. I think we all take our good health for granted at times until we read a story like this. Thanks for sharing! What an incredible story. I think we all take our good health for granted at times until we read a story like this. Thanks for sharing!

]]> By: Jon http://blogbitesman.net/2008/05/07/what-a-difference-a-year-makes/#comment-13472 Jon Fri, 09 May 2008 03:13:30 +0000 http://blogbitesman.net/?p=157#comment-13472 Thanks for commenting, Kevin. Maui sounds like a good 2nd year anniversary, thanks for the idea! :) Thanks for commenting, Kevin. Maui sounds like a good 2nd year anniversary, thanks for the idea! :)

]]> By: Kevin http://blogbitesman.net/2008/05/07/what-a-difference-a-year-makes/#comment-13471 Kevin Fri, 09 May 2008 01:06:47 +0000 http://blogbitesman.net/?p=157#comment-13471 Very positive story. I'm nearing the 2 year anniversary of my diagnosis with Churg Strauss and it is very similar to yours (except I had heart involvement). It truly is amazing what a difference a year makes - my wife and I (and my parents) spent my one year anniversary snorkeling in Maui... it was a wonderful, symbolic life-affirming event. Now a year later, we have a four-month-old son and life goes on as it always has. Prednisone truly is a wonder drug - people can complain all they want about weight gain and night sweats, but the fact is that it is our lifeline. It is incredible how a dose of prednisone can take me from outright sick and asthmatic back to perfect health in 90 minutes. Congrats on year 1 - its good to know there will be many more to come. Very positive story. I’m nearing the 2 year anniversary of my diagnosis with Churg Strauss and it is very similar to yours (except I had heart involvement). It truly is amazing what a difference a year makes – my wife and I (and my parents) spent my one year anniversary snorkeling in Maui… it was a wonderful, symbolic life-affirming event. Now a year later, we have a four-month-old son and life goes on as it always has. Prednisone truly is a wonder drug – people can complain all they want about weight gain and night sweats, but the fact is that it is our lifeline. It is incredible how a dose of prednisone can take me from outright sick and asthmatic back to perfect health in 90 minutes. Congrats on year 1 – its good to know there will be many more to come.

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