[lorigood243]

Dear friends

how i have missed you all and thank you for your well wishes!
i went in the hospital june 3rd with a lung infection. while i was there my new primary care said lets try to take some of this fluid off your abdomen, i have wanted this for a very long time so i said yes! they were able to take 20lbs of the 85 off...but then bad things happened. my potassium and salt dropped dangerously low and my kidneys were messing up. i felt like i had the worst flu ever.
it took them a week to stabilize me. i just got out on saturday night the 19th. i have had a few rough days at home, but feel stronger today.

i have resigned to the fact that this swelling is here to stay and i will just live with it, i am done trying to get rid of it. so pain mgt is all i have and that will have to be enough! i have learned my lesson.

thank you for your prayers and thoughts
Lori

[catra121]

I am glad that you are feeling a little better today. I am so sorry that things didn't work out the way that you wanted them to...but at least you know now. And with the way things advance all the time in the medical field...maybe someday they will be able to do something for the swelling. I keep praying for you and hoping that things work out well for you. Hugs!

[SandyRI]

Don't ever give up!!!

Have you considered Lidocaine or ketamine yet? Both have been very effective for me, especially ketamine.

Yes, some treatments are definitely going to wear you out in the short term. Getting better is HARD WORK!!! This stuff is not for the faint of heart. All together I've had over 50 infusions between the lidocaine and ketamine. The veins in my left hand (the ones that haven't collapsed or broken) can't be used anymore for inserting lines because I've got phlebitis so I'll be having a port-a-cath put in my chest soon. My right side has RSD.

But as of this week is my one year anniversary of returning to my FT job!! I made it one year! Ketamine has given me a good chunk of my old life back, and it's awesome! I have to work very hard at it compared to everyone else, and my husband is an enormous help. Where there is a will, you may find a way...

like I said before, don't ever give up!!!

XOXOX. Sandy

Originally Posted by lorigood243

Dear friends

how i have missed you all and thank you for your well wishes!
i went in the hospital june 3rd with a lung infection. while i was there my new primary care said lets try to take some of this fluid off your abdomen, i have wanted this for a very long time so i said yes! they were able to take 20lbs of the 85 off...but then bad things happened. my potassium and salt dropped dangerously low and my kidneys were messing up. i felt like i had the worst flu ever.
it took them a week to stabilize me. i just got out on saturday night the 19th. i have had a few rough days at home, but feel stronger today.

i have resigned to the fact that this swelling is here to stay and i will just live with it, i am done trying to get rid of it. so pain mgt is all i have and that will have to be enough! i have learned my lesson.

thank you for your prayers and thoughts
Lori

[gabbycakes]

Originally Posted by SandyRI

Don't ever give up!!!

Have you considered Lidocaine or ketamine yet? Both have been very effective for me, especially ketamine.

Yes, some treatments are definitely going to wear you out in the short term. Getting better is HARD WORK!!! This stuff is not for the faint of heart. All together I've had over 50 infusions between the lidocaine and ketamine. The veins in my left hand can't be used anymore for inserting lines because I've got phlebitis so I'll be having a port-a-cath put in my chest soon. My right side has RSD.

But as of this week is my one year anniversary of returning to my FT job!! I made it one year! Ketamine has given me a good chunk of my old life back, and it's awesome! I have to work very hard at it compared to everyone else, and my husband is an enormous help. Where there is a will, you may find a way...

like I said before, don't ever give up!!!

XOXOX. Sandy

Hi Lori,

Glad to hear you are home and feeling a little better.

It's exhausting to try and find someone to help you when you have a medical condition that nobody knows whats going on and they don't want to know. I experienced this when I had my accident. I was told by several doctors, "you'll never use that arm again", "I can't help you", "maybe this doctor can", "you have a 1 in a million situation that occured". I'm not going to go on but it took me 2 years to find the correct doctors, then once I did they where not even so sure they wanted to get involved. But there was 1 doctor he was my pain doctor who knew what needed to be done and knew the doctor who could do it correctly and from what I have been told he is 1 of only 5 doctors in this whole country who could fix it properly. So I was introduced to him and even he kind of was not sure. But finally that pain doctor worked for me like I will never forget just kept pushing this surgeon, and pushing for me. He knew I was misrably in pain at this point, RSD flaring out of control and 1 armed, help please. So the point is don't give up. Today, I work PT and can do most things to a point. It took from 2005 to 2009 many surgeries, 3 - 5 day inpatiend ketamine treatments, but I got there and if it was not for that one doctor who just kind of took me under his wing who knows where I would be today.

When I was searching I would look up my condition using the computer, my condition did have a name, and then see who was doing research in that area. I would see this doctors name all over the place. So when somebody recommended a pain doctor from the same hospital I jump on it and that is how it all happened. Would you believe I got a doctor from Hopkins to email direct and he still does and wants me to come down so he can see my arm. I still have left over nerve damage that is impossible to find anyone to fix, even my surgeon just thinks it's to risky. The doctor from Hopkins claims through email that he can correct my nerve issues through surgery. I think I'll wait on that one.

Keep well and enjoy the summer.

Gabbycakes

[lorigood243]

Thank you all for your well wishes and advice!
i am so glad to be home. i never ever want to be in the hospital again.
what i did realize is that i have not been doing all that i can for myself.

its up to me to stick to a daily exercise plan, to eat very well.
maybe then i will feel a little stronger and better.
hugs and love
Lori