The info that Pat directed me to

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The info that Pat directed me to

Postby Teddi » Sat Oct 14, 2006 7:32 am

I took the info on my condition (MLL pseudosarcoma) that Pat directed me to and sent it to my doctor. I was so thrilled to finally know that what I have actually can be dealt with safely. So when my doctor called me, I was in a really "up" mood. I asked her what should my next move be and she said, "I don't know!" Talk about the balloon deflating pretty fast. I insisted that someone at Iowa City should be willing to contact one of the doctors who have written papers on this condition and she said that it isn't done that way. She said that the only way I could get this taken care of would be if one of these doctors would accept me and I could get there and then I would need to pay for it myself as my insurance only covers things done in Iowa!

I begged, pleaded and insisted that there has to be a surgeon in IC who would be willing to try and she finally said well, I can make you an appointment with plastics but I wouldn't hold out a lot of hope.

I sincerely hope that this surgeon is nicer and more open than the last one I saw down there who told me to shut up and stop eating or the internist who said this thing is terminal and you're going to die and there's nothing you can do about it.

I'm beginning to think that no one anywhere gives a rat's behind about how uncomfortable I am and how disabled this makes me. If i could just get this thing removed, I am sure I could walk - if I could get my lets together, I could exercise and i could get stronger.

Anyway, to make a long story short, I have gone from a feeling of hope to one of depression. Sorry to lay all of this on you guys who have been so supportive, but I have to tell someone. My husband is tired of hearing it, not to mention how tired he is of having to help me with just about everything.

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Postby patoco » Sat Oct 14, 2006 8:19 am

Hi Ya Teddie :)

Hang in there my's a big encouragement hug to ya :wink: :!: :!: :!:

Let me tell ya, Teddie, just how much I understand how you are feeling.

I went through a lot of the same thing when I as a hereditary lymphedema person came down with lymphoma. The *%*$*#* oncologists would not listen to me and acted as if I was dumber then a barn because (I) was a patient and not one of them.

It wasn't until I found an oncologist who specialized in lymphoma and who knew about lymphedema to finally get the kind of treatment I needed. This oncologist can not believe the way his collegues had been to me.

What really makes me so flippin angry is that since the first diagnosis in 1995, there has been a tremendous amount of research done...and guess what??? Every bit of research has validated what I was telling tthese morons a decade ago.

Just know we're with ya :!: :!: :!:

Pat 8)
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Postby silkie » Sun Oct 15, 2006 5:45 am

Hiya Teddi

Well hun you got the bit between your teeth don't let em get you down keep the pressure on this is for you donn't let ignorance and indifference beat you down


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