Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 06-06-2011, 07:36 PM #1
lorigood243 lorigood243 is offline
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Default Update: Been in the hospital a few days

Hello all...

I am in the hospital and have been since last Thursday. it started with a lung infection from gasteoparisis and having acid reflux about 2 weeks ago...aspirated in my lungs and began a lung infection.

short story is my new wonderful primary care doctor said go to th ER I will have you admitted for the lung problem and while you are there i will get a kidney doctor in to help get some of the fluid off of you. so i have been on heavy diuretics that i couldnt monitor at home. for those of you who dont know my story i have 85lbs of fluid on my abdomen that started with gallbladder surgery 6 years ago. I was just diagnosed with RSD 5 years ago.

so they have gotten about 15lbs of fluid off me but its not coming off the place i need it to and i am getting in the danger zone for kidney problems so they have to take me off the diuretics now.

so the new kidney doctor said i want you to go on the strictest diet you can stand for 2 weeks and lose 20 lbs and lets see if you can lose fluid too. so i explained to him that i have lost 125lbs at one point but i dont lose fluid...but he has only known me 20 minutes and i have dealt with this for 6 years. BUT i said i will do what you have asked since you are new and wed need a starting place for you and i.

then i spoke with the new primary care doctor and told him of the plan. he has made a commitment to me to research RSD and CRPS so he can take the reigns and manage me. he said he really cares and wants to help improve my quality of life. I am so joy filled and have great hope that he has showed this interest in helping me however he can.

So I will be discharged tomorrow and am looking forward to getting back to my hubby and my cat who i am told misses me terribly

a quick word about my spouse Steve. He is my caretaker, my love my best friend of 30 years! He has come up everyday to the hospital and has spent 5 hours each day. he has brought games to entertain me, healthy food to supplement the hospital stuff has brought stuffed animals, flowers and came and shampooed my hair tonight. Some how in this crazy mixed up cruel illness, Steve thrives in caring for me. He misses his old Lori so very much but makes the best he can of the Lori he has to work with because at least I am here and not dead. I am alot to take care of!

It is impossible to pay back our caretakers. I certainly dont want to say that I hope i can take care of you one day like this because I never want to see him in this misery...but 1 month ago I was on my pity pot saying life just sucks! why me why me! 30 days later, my perspective has turned upside down. Life can be better, new days bring new hopes. so i just wanted to share my story for today. you may not have a "Steve" in your life, but I pray you all do! I know many of you have awesome doctors, while up untill this point mine all sucked! So bringing new people in your life friends, doctors, family, can change things...especially all the praying i have been doing for guidance and asking God to help me see a new way to help myself.

Bless you all and thank you for sharing all your stories here too...we all get hope from eachother!
Lori
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Wishing you a day of pain free movement that turns into forever!
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birchlake (06-08-2011), gabbycakes (06-07-2011), gramE (06-07-2011), hannah1234 (06-06-2011), kathy d (06-09-2011), wswells (06-08-2011)
Old 06-07-2011, 04:28 PM #2
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Praise the Lord! What a wonderful report to hear. And not one but two doctors who are concerned about you. Girl, you better mind. The first 3 days of a strict diet are the worst. Heck, if it would help, tell him you will fast for two weeks.

Hallelujah,
pat e
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Old 06-07-2011, 05:31 PM #3
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Quote:
Originally Posted by lorigood243 View Post
Hello all...

I am in the hospital and have been since last Thursday. it started with a lung infection from gasteoparisis and having acid reflux about 2 weeks ago...aspirated in my lungs and began a lung infection.

short story is my new wonderful primary care doctor said go to th ER I will have you admitted for the lung problem and while you are there i will get a kidney doctor in to help get some of the fluid off of you. so i have been on heavy diuretics that i couldnt monitor at home. for those of you who dont know my story i have 85lbs of fluid on my abdomen that started with gallbladder surgery 6 years ago. I was just diagnosed with RSD 5 years ago.

so they have gotten about 15lbs of fluid off me but its not coming off the place i need it to and i am getting in the danger zone for kidney problems so they have to take me off the diuretics now.

so the new kidney doctor said i want you to go on the strictest diet you can stand for 2 weeks and lose 20 lbs and lets see if you can lose fluid too. so i explained to him that i have lost 125lbs at one point but i dont lose fluid...but he has only known me 20 minutes and i have dealt with this for 6 years. BUT i said i will do what you have asked since you are new and wed need a starting place for you and i.

then i spoke with the new primary care doctor and told him of the plan. he has made a commitment to me to research RSD and CRPS so he can take the reigns and manage me. he said he really cares and wants to help improve my quality of life. I am so joy filled and have great hope that he has showed this interest in helping me however he can.

So I will be discharged tomorrow and am looking forward to getting back to my hubby and my cat who i am told misses me terribly

a quick word about my spouse Steve. He is my caretaker, my love my best friend of 30 years! He has come up everyday to the hospital and has spent 5 hours each day. he has brought games to entertain me, healthy food to supplement the hospital stuff has brought stuffed animals, flowers and came and shampooed my hair tonight. Some how in this crazy mixed up cruel illness, Steve thrives in caring for me. He misses his old Lori so very much but makes the best he can of the Lori he has to work with because at least I am here and not dead. I am alot to take care of!

It is impossible to pay back our caretakers. I certainly dont want to say that I hope i can take care of you one day like this because I never want to see him in this misery...but 1 month ago I was on my pity pot saying life just sucks! why me why me! 30 days later, my perspective has turned upside down. Life can be better, new days bring new hopes. so i just wanted to share my story for today. you may not have a "Steve" in your life, but I pray you all do! I know many of you have awesome doctors, while up untill this point mine all sucked! So bringing new people in your life friends, doctors, family, can change things...especially all the praying i have been doing for guidance and asking God to help me see a new way to help myself.

Bless you all and thank you for sharing all your stories here too...we all get hope from eachother!
Lori
Great News and good advice! Most doctors who have treated me agree that even an additional 10 pounds can increase pain. Since I have committed to manage my weight my pain is more manageable!!! Put your nose to the grindstone and work real hard!!!
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Old 06-07-2011, 06:05 PM #4
gabbycakes gabbycakes is offline
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Quote:
Originally Posted by lorigood243 View Post
Hello all...

I am in the hospital and have been since last Thursday. it started with a lung infection from gasteoparisis and having acid reflux about 2 weeks ago...aspirated in my lungs and began a lung infection.

short story is my new wonderful primary care doctor said go to th ER I will have you admitted for the lung problem and while you are there i will get a kidney doctor in to help get some of the fluid off of you. so i have been on heavy diuretics that i couldnt monitor at home. for those of you who dont know my story i have 85lbs of fluid on my abdomen that started with gallbladder surgery 6 years ago. I was just diagnosed with RSD 5 years ago.

so they have gotten about 15lbs of fluid off me but its not coming off the place i need it to and i am getting in the danger zone for kidney problems so they have to take me off the diuretics now.

so the new kidney doctor said i want you to go on the strictest diet you can stand for 2 weeks and lose 20 lbs and lets see if you can lose fluid too. so i explained to him that i have lost 125lbs at one point but i dont lose fluid...but he has only known me 20 minutes and i have dealt with this for 6 years. BUT i said i will do what you have asked since you are new and wed need a starting place for you and i.

then i spoke with the new primary care doctor and told him of the plan. he has made a commitment to me to research RSD and CRPS so he can take the reigns and manage me. he said he really cares and wants to help improve my quality of life. I am so joy filled and have great hope that he has showed this interest in helping me however he can.

So I will be discharged tomorrow and am looking forward to getting back to my hubby and my cat who i am told misses me terribly

a quick word about my spouse Steve. He is my caretaker, my love my best friend of 30 years! He has come up everyday to the hospital and has spent 5 hours each day. he has brought games to entertain me, healthy food to supplement the hospital stuff has brought stuffed animals, flowers and came and shampooed my hair tonight. Some how in this crazy mixed up cruel illness, Steve thrives in caring for me. He misses his old Lori so very much but makes the best he can of the Lori he has to work with because at least I am here and not dead. I am alot to take care of!

It is impossible to pay back our caretakers. I certainly dont want to say that I hope i can take care of you one day like this because I never want to see him in this misery...but 1 month ago I was on my pity pot saying life just sucks! why me why me! 30 days later, my perspective has turned upside down. Life can be better, new days bring new hopes. so i just wanted to share my story for today. you may not have a "Steve" in your life, but I pray you all do! I know many of you have awesome doctors, while up untill this point mine all sucked! So bringing new people in your life friends, doctors, family, can change things...especially all the praying i have been doing for guidance and asking God to help me see a new way to help myself.

Bless you all and thank you for sharing all your stories here too...we all get hope from eachother!
Lori
Lori,

So thrilled for you. Feel better. You are an inspiriation to us all!

Gabbycakes
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Old 06-08-2011, 03:38 AM #5
daniella daniella is offline
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You are in my thoughts. I am glad you have a new doctor who sounds caring and willing to work hard for you. Also that you have a wonderful and supportive husband. I hope you feel better and the transition home is good.
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Old 06-08-2011, 05:18 PM #6
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I am so happy to hear that things seem to be looking up for you...you are constantly in my thoughts. I am glad you have a new, compassionate primary care doctor and that they are actively working to make things better for you. And you are blessed with Steve...I feel very lucky to have my boyfriend and he has been such a joy for me in these hard times. I am glad you have someone like that to help and support you.
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Old 06-09-2011, 06:38 AM #7
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Originally Posted by gramE View Post
Praise the Lord! What a wonderful report to hear. And not one but two doctors who are concerned about you. Girl, you better mind. The first 3 days of a strict diet are the worst. Heck, if it would help, tell him you will fast for two weeks.

Hallelujah,
pat e
Hi Lori,

We are all here to cheer you on through the worst days of the strict diet!!! Try to get out for a little sunshine and think of some ways to reward yourself throughout the day to keep you motivated. If you get frustrated let us know. Don't give up! You can do it!!!!!!!!!!
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Old 06-16-2011, 02:13 PM #8
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I hope this bumps this thread back to the top. I spoke to Lori and she is still in the hospital. Their efforts to reduce her swelling via diuretics only resulted in low potassium and sodium levels. They have leveled the potassium and are working on the sodium. She ask me to post this update because she has been too sick to follow up and she wanted all to know why she wasn't on here.

Her extended stay has been stressful and she asked for prayers that her levels would stabilize and she could return home to her family. She is still looking fwd to working with her new dr on a treatment plan.

Thanks for your support
Pat e
GramE
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Old 06-16-2011, 06:56 PM #9
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Hospitalizations are stressful. Here is a prayer and good thoughts that lorigood gets out of there and back on the mend!
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Old 06-16-2011, 11:02 PM #10
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Loriggod,
I'm sooty to hear that your case still is unstable bit I'm so happy that you are getting better medical treatment in the hospital. You are in my prayers and when you are feeling better let us know how you are doing. I miss hearing from you and also wanted to tell you that you are in my thoughts on a regular basis. Hang in there, I know how much it sucks being in the hospital but you will be back home before you know it and hopefully you will be feeling much better.
Sarah xoxoxo
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