Re: Painful and alone

From: DT (
Wed Sep 21 21:50:09 2005


No - I'm done. - at my limit. For the last three years I have struggled working fulltime (more than 60 hours a week, taking Tae Kwon Do (I am one belt away from my black belt), volunteering for the Red Cross as a disaster action team leader - volunteering as an auxiliarly police officer - all the time with the pain getting worse and worse.

Finally I had to start taking pain medicine so I couldn't do the police work

any more, and the increasing pain meant that there were times that I could not lead my disaster teams when they were called put .. then I couldn't do TKD any longer, and finally work became more and more difficult (no elevator, three flights of stairs, lots of stress). One by one all of the things that I love and that bring meaning to my life and soul were stripped away. I never used to take much more than a motrin or aspirin - now I'm on so much pain medicine and I still hurt bad. I made it for three years but I

can't go any longer. Believe me, I've done years of research and I've had the blockages and adhesions blocking off the bladder and I've searched for "specialists" and medical advances and I hadn't found a single one that I felt comfortable with. I know the risks of my surgery very well and as scared as I am of having this one, I believe that this Dr. can help me. He and I both spoke at length about my disease and we are considering some additional treatments post-surgery such as immediate strong doses of steriods for short period of time - or even considering using some of the Cox-2 inhibitors in stong dose for short period immediately following surgery just to see if it helps to slow the adhesions - he will also use the

one of the barriers - Seprafilm or Interceed - dependent upon what he sees when he goes in.

I waited a long time and searched around before I found him - I only pray that he has the skilled hands I believe he does and that I wake up with an opportunity for at least a year or more of less pain than I have had so I can get back to my life.

Surgery is a very personal decision and I fully understand the risks. I pray that the potential complications do not occur - but if they do then I will deal with whatever I have to deal with. I can no longer live like this - I have no life. I am in bed 14 hours a day and when I'm able to get out I generally only make it a few hours if I'm lucky with the pain.

That doesn't win you much in the love and friendship department because people tend to get "compassion overload". I have been sick for so long that

its irrelevant to ask "how are you" any more by my partner. I know that I have the support from family and friends, but they are also dealing with death and illness in their own family and lives. And work - well I'm a department head who has two new employees whom I can communicate with basically only by email (I work with laptop in bed). We are responsible for

millions of dollars and I'm giving directions in the blind to people with little or no experience. And while all this is happening sometimes I feel so sick I don't think I have enough strength to evven answer the emails.

So, the long anser to your question is yes, I have thought way more than twice. I know more about this disease than I ever wanted to konw. I understand I will more than liklely face surgery in potentially 1 to 5 years - both my Dr. and I know. But he is willing to give me that opportunity and I am at the point that I have to grab onto this last line.

I never get upset when people suggest having no more surgeries because I know it comes from your heart and love and more than likely experience. I've said to many others - this is a VERY perrsonal decision. I thought my surgeries were a lot until I read some folks have had 30 or more. I sure hope not to get to that point - day at a time.

So - wish me luck next week and hopefully I'll be writing to you all in a few weeks about how wonderful everything went.

Best wishes to you Dawn - thanks for your thoughts and concerns. DT

>----- Original Message -----
Sent: Sunday, September 18, 2005 7:24 PM Subject: Painful and alone

> Hi DT,
> I understand what you are going through!!!!!
> It sucks!!!!!!!! But, You should think twice about
> more surgery, just because I know everytime I had
> surgery it made the pain twice as bad!!!! Maybe
> that's why the doctor's don't wamt to do it. My
> doctor told me everytime you have surgery you
> run a high risk of getting more adhesions and
> pain. Plus look at what other people have wrote
> about more surgeries, and what you have already
> gone through!!! Can you handle any more pain????

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