Re: Jai home from hosp PART 2

[Guest guest]

Oh Jai,

You’ve had such a rough time of it. I

am so sorry you are going through all of this. Sounds like you’ve kept

your chin up and are fighting hard. I’m glad you had family with you…I

will keep you in my prayers.

Alyson

[Guest guest]

Jai,

Rest up dear one.

Luv Laurie

[Guest guest]

hello jai. glad to see you are home. you must have a whacked out immune

system. i am 54 and my bones are at least 90. not good. the chemo is

taking my calcium out of my bones. hope the infection goes away

quickly and you feel better soon. love ya cathy

[Guest guest]

Jai really glad that your home hopefully things have to get better..... your such a caring person ...thank you and i will keep praying for you...soft hugs Pamjaismonkey@... wrote:

In a message dated 2/13/2005 6:42:26 A.M. Eastern Standard Time, RSD-CRPSofAmerica writes:

Well, I got home from the hospital aka medical prison yesterday. I was in for 10 days. I was in a terrible flare and suffered at home for about two weeks. I had an appt with my GP to follow up from the hospitalization in January when I had the seizure. Well she took one look at me at put me in the hosp right from her office. She knows that if I am crying and say I hurt then something is very wrong because I do not complain much. Usually I fight going into the hosp but not this time, I hurt sooooo bad. It was beyond pain, it was AGONY. It felt like my legs below the knees were doused in gasoline, lit on fire, beat with a baseball bat and stung by 1000 bees. I had been running a low grade temp about 100 degrees spiking

occasionally to about 101-102. I had many many docs in to see me at the hosp, a lot I did not know as well as my "team" including my pain doc, ortho, neuro, infectious disease, GP, etc. These docs know me, I have been with them since 2000. They have never seen me in such a condition.The weird thing was that my left leg was just as bad as the right (my RSD leg). I have had occasional flares where the left acted up but NOTHING like this. They were so swollen and painful I would not let anyone touch them. I had to wear those big puffy ankle protector thingies that old people wear because I could not even rest my feet on the bed it hurt sooooo bad. My GP said "you have about fifteen doctors scratching their heads right now". They could not figure out what was going on. The first bone scan was positive in both ankles, heels and on the right the foot too. The

infectious disease said I had osteomyelitis (bone infections) on both ankles and the ortho said fractures of both ankles, heel and right foot. Then a couple of days later they did a second bone scan which was more specialized. It is called a Leukocyte-tagged bone scan. They take out sixty cc's of blood, send it to a lab, mix it with something called Indium, it's a radioactive material. Then they bring it back re-inject it back into you and wait about fourteen hours and repeat the bone scan. The theory is that the Indium will accumulate wherever there is increased uptake of white blood cell indicating infection. Well, this one was positive too. Not good. I apologize, but I am so very tired. This is getting very long. Consider this PART ONE. LOL!!!!! I will try to write PART TWO later. If not tonite, then tomarrow. I am going to try to read more then lay down. GOD

bless to all!!!!!! Take care, love Jai

Hi Everyone, here is PART TWO LOL!!!!!

Well, since the bone scans were positive they have to treat me for osteomyelitis as well as fractured ankles/heels and right foot. I am in CAM walkers on both legs and need a walker to get around. Thankfully right away I was treated for the severe pain and was very grateful for that. The SCS wasn't even touching the pain but the increased meds took my pain from off the scale to about a tolerable 4-5.

I have a very significant history of severe infections and have had osteomyelitis twice before. Once in my middle finger of right hand after cutting it on a can at work, and second in the right clavicle (collar bone) due to being septic with MRSA (Methacillin Resistant Staphylococcus Aureaus) a very severe infection that is hard to treat. I also have a history of cutaneous tuberculosis, I had a chronic wound of the RSD leg for about 2 years. This in it's self puts me at high risk for future infections. I was on isolation for 7 of the 10 days in the hosp. Thankfully it is a very nice hospital and the rooms are very patient-friendly LOL!!! All private rooms, they are quite homey, with a nice soft recliner and a big sofa too!!! Private bath and shower also. The nurses are so nice and many know me from my extensive time spent on this floor. It is the Orthopedic/Neuro floor.

One very scary thing is that at my tender age (LOL!!!) of 30-something I should not be having pathological fractures, this is something that you see in the very old. I have had Osteoporosis due to the RSD and am quite scared because my bones seem to be just crumbling. Does anyone else have this too????? I have had 2 previous pathological fractures, one of my RSD foot, I was sitting at the computer one day a couple of years ago and stood up, heard a "pop" and had really bad pain in the foot. The x-ray showed a fx of a bone in my foot. Then last July I fell and fx my wrist. Not good

While I was in the hospital I stupidly leaned over the bed rail to get something out of the bed side table and hurt my rib. They did a x-ray and I fx a rib!!!!! HELP - I am falling apart!!!!!! They started using Lidocaine patches on the rib and it helps a little.

OK this is getting long, let me wrap it up!!!! Since the dx was osteomyelitis they said that I would have to be on IV antibiotics for six weeks. Well, Medicare would not pay for a nurse to come to the home and I would have to go to a nursing home for six weeks!!! I just fell apart!!! My infectious disease doc came to see me and said that there is a med taken by mouth called ZYVOX that could be used but it is extremely expensive. I thought, I don't care, I'll pay ANYTHING not to go to a nursing home. It is made by Pfizer and I thought great!!! because I have a Pfizer card that allows me to get meds made by them for $15 co-pay. My Dad called Pfizer to see what the deal was and unfortunately THIS particular med is not covered and my co-pay was going to be $5000.00, yes FIVE THOUSAND dollars!!!!! OMG!!!!!!!. Well, my Dad, who sometimes I think is God, LOL!!!!! got Pfizer to give me the drug for $5.00 YES FIVE dollar co pay!!!! I don't know what he

did or how he did it but I AM HOME!!!!!!!!!!!!!!!

I was on a IV med called Zosyn 3X a day to treat the osteo. I will be on the Zyvox for 6 weeks then they will repeat the bone scans. Glad to be back, I have missed you all. Love Jai

[Guest guest]

Jai,

Ah.. what you had to endure! Thank Goodness the nurses and the setting made it

at least tolerable.

I'm glad you were able to come home. Thank your Dad for us, too, tell him we

appreciate him getting you home.

Rest, get better and keep in touch!

Hugs,

Jo

[Guest guest]

Hi Jai!

I am also welcoming you home from the hospital again and hope things are still improving. I cannot imagine going through what you have been going through - sounds much worse than my pain, although some days in my life for the last 16 yrs have been pretty awful too.My thoughts and prayers as well as Pam's are going out to you. Take care. Hugs. ConniePamela Fredette wrote:

Jai really glad that your home hopefully things have to get better..... your such a caring person ...thank you and i will keep praying for you...soft hugs Pamjaismonkey@... wrote:

In a message dated 2/13/2005 6:42:26 A.M. Eastern Standard Time, RSD-CRPSofAmerica writes:

Well, I got home from the hospital aka medical prison yesterday. I was in for 10 days. I was in a terrible flare and suffered at home for about two weeks. I had an appt with my GP to follow up from the hospitalization in January when I had the seizure. Well she took one look at me at put me in the hosp right from her office. She knows that if I am crying and say I hurt then something is very wrong because I do not complain much. Usually I fight going into the hosp but not this time, I hurt sooooo bad. It was beyond pain, it was AGONY. It felt like my legs below the knees were doused in gasoline, lit on fire, beat with a baseball bat and stung by 1000 bees. I had been running a low grade temp about 100 degrees spiking

occasionally to about 101-102. I had many many docs in to see me at the hosp, a lot I did not know as well as my "team" including my pain doc, ortho, neuro, infectious disease, GP, etc. These docs know me, I have been with them since 2000. They have never seen me in such a condition.The weird thing was that my left leg was just as bad as the right (my RSD leg). I have had occasional flares where the left acted up but NOTHING like this. They were so swollen and painful I would not let anyone touch them. I had to wear those big puffy ankle protector thingies that old people wear because I could not even rest my feet on the bed it hurt sooooo bad. My GP said "you have about fifteen doctors scratching their heads right now". They could not figure out what was going on. The first bone scan was positive in both ankles, heels and on the right the foot too. The

infectious disease said I had osteomyelitis (bone infections) on both ankles and the ortho said fractures of both ankles, heel and right foot. Then a couple of days later they did a second bone scan which was more specialized. It is called a Leukocyte-tagged bone scan. They take out sixty cc's of blood, send it to a lab, mix it with something called Indium, it's a radioactive material. Then they bring it back re-inject it back into you and wait about fourteen hours and repeat the bone scan. The theory is that the Indium will accumulate wherever there is increased uptake of white blood cell indicating infection. Well, this one was positive too. Not good. I apologize, but I am so very tired. This is getting very long. Consider this PART ONE. LOL!!!!! I will try to write PART TWO later. If not tonite, then tomarrow. I am going to try to read more then lay down. GOD

bless to all!!!!!! Take care, love Jai

Hi Everyone, here is PART TWO LOL!!!!!

Well, since the bone scans were positive they have to treat me for osteomyelitis as well as fractured ankles/heels and right foot. I am in CAM walkers on both legs and need a walker to get around. Thankfully right away I was treated for the severe pain and was very grateful for that. The SCS wasn't even touching the pain but the increased meds took my pain from off the scale to about a tolerable 4-5.

I have a very significant history of severe infections and have had osteomyelitis twice before. Once in my middle finger of right hand after cutting it on a can at work, and second in the right clavicle (collar bone) due to being septic with MRSA (Methacillin Resistant Staphylococcus Aureaus) a very severe infection that is hard to treat. I also have a history of cutaneous tuberculosis, I had a chronic wound of the RSD leg for about 2 years. This in it's self puts me at high risk for future infections. I was on isolation for 7 of the 10 days in the hosp. Thankfully it is a very nice hospital and the rooms are very patient-friendly LOL!!! All private rooms, they are quite homey, with a nice soft recliner and a big sofa too!!! Private bath and shower also. The nurses are so nice and many know me from my extensive time spent on this floor. It is the Orthopedic/Neuro floor.

One very scary thing is that at my tender age (LOL!!!) of 30-something I should not be having pathological fractures, this is something that you see in the very old. I have had Osteoporosis due to the RSD and am quite scared because my bones seem to be just crumbling. Does anyone else have this too????? I have had 2 previous pathological fractures, one of my RSD foot, I was sitting at the computer one day a couple of years ago and stood up, heard a "pop" and had really bad pain in the foot. The x-ray showed a fx of a bone in my foot. Then last July I fell and fx my wrist. Not good

While I was in the hospital I stupidly leaned over the bed rail to get something out of the bed side table and hurt my rib. They did a x-ray and I fx a rib!!!!! HELP - I am falling apart!!!!!! They started using Lidocaine patches on the rib and it helps a little.

OK this is getting long, let me wrap it up!!!! Since the dx was osteomyelitis they said that I would have to be on IV antibiotics for six weeks. Well, Medicare would not pay for a nurse to come to the home and I would have to go to a nursing home for six weeks!!! I just fell apart!!! My infectious disease doc came to see me and said that there is a med taken by mouth called ZYVOX that could be used but it is extremely expensive. I thought, I don't care, I'll pay ANYTHING not to go to a nursing home. It is made by Pfizer and I thought great!!! because I have a Pfizer card that allows me to get meds made by them for $15 co-pay. My Dad called Pfizer to see what the deal was and unfortunately THIS particular med is not covered and my co-pay was going to be $5000.00, yes FIVE THOUSAND dollars!!!!! OMG!!!!!!!. Well, my Dad, who sometimes I think is God, LOL!!!!! got Pfizer to give me the drug for $5.00 YES FIVE dollar co pay!!!! I don't know what he

did or how he did it but I AM HOME!!!!!!!!!!!!!!!

I was on a IV med called Zosyn 3X a day to treat the osteo. I will be on the Zyvox for 6 weeks then they will repeat the bone scans. Glad to be back, I have missed you all. Love Jai

[Guest guest]

Hi Jai!

I am also welcoming you home from the hospital again and hope things are still improving. I cannot imagine going through what you have been going through - sounds much worse than my pain, although some days in my life for the last 16 yrs have been pretty awful too.My thoughts and prayers as well as Pam's are going out to you. Take care. Hugs. ConniePamela Fredette wrote:

Jai really glad that your home hopefully things have to get better..... your such a caring person ...thank you and i will keep praying for you...soft hugs Pamjaismonkey@... wrote:

In a message dated 2/13/2005 6:42:26 A.M. Eastern Standard Time, RSD-CRPSofAmerica writes:

Well, I got home from the hospital aka medical prison yesterday. I was in for 10 days. I was in a terrible flare and suffered at home for about two weeks. I had an appt with my GP to follow up from the hospitalization in January when I had the seizure. Well she took one look at me at put me in the hosp right from her office. She knows that if I am crying and say I hurt then something is very wrong because I do not complain much. Usually I fight going into the hosp but not this time, I hurt sooooo bad. It was beyond pain, it was AGONY. It felt like my legs below the knees were doused in gasoline, lit on fire, beat with a baseball bat and stung by 1000 bees. I had been running a low grade temp about 100 degrees spiking

occasionally to about 101-102. I had many many docs in to see me at the hosp, a lot I did not know as well as my "team" including my pain doc, ortho, neuro, infectious disease, GP, etc. These docs know me, I have been with them since 2000. They have never seen me in such a condition.The weird thing was that my left leg was just as bad as the right (my RSD leg). I have had occasional flares where the left acted up but NOTHING like this. They were so swollen and painful I would not let anyone touch them. I had to wear those big puffy ankle protector thingies that old people wear because I could not even rest my feet on the bed it hurt sooooo bad. My GP said "you have about fifteen doctors scratching their heads right now". They could not figure out what was going on. The first bone scan was positive in both ankles, heels and on the right the foot too. The

infectious disease said I had osteomyelitis (bone infections) on both ankles and the ortho said fractures of both ankles, heel and right foot. Then a couple of days later they did a second bone scan which was more specialized. It is called a Leukocyte-tagged bone scan. They take out sixty cc's of blood, send it to a lab, mix it with something called Indium, it's a radioactive material. Then they bring it back re-inject it back into you and wait about fourteen hours and repeat the bone scan. The theory is that the Indium will accumulate wherever there is increased uptake of white blood cell indicating infection. Well, this one was positive too. Not good. I apologize, but I am so very tired. This is getting very long. Consider this PART ONE. LOL!!!!! I will try to write PART TWO later. If not tonite, then tomarrow. I am going to try to read more then lay down. GOD

bless to all!!!!!! Take care, love Jai

Hi Everyone, here is PART TWO LOL!!!!!

Well, since the bone scans were positive they have to treat me for osteomyelitis as well as fractured ankles/heels and right foot. I am in CAM walkers on both legs and need a walker to get around. Thankfully right away I was treated for the severe pain and was very grateful for that. The SCS wasn't even touching the pain but the increased meds took my pain from off the scale to about a tolerable 4-5.

I have a very significant history of severe infections and have had osteomyelitis twice before. Once in my middle finger of right hand after cutting it on a can at work, and second in the right clavicle (collar bone) due to being septic with MRSA (Methacillin Resistant Staphylococcus Aureaus) a very severe infection that is hard to treat. I also have a history of cutaneous tuberculosis, I had a chronic wound of the RSD leg for about 2 years. This in it's self puts me at high risk for future infections. I was on isolation for 7 of the 10 days in the hosp. Thankfully it is a very nice hospital and the rooms are very patient-friendly LOL!!! All private rooms, they are quite homey, with a nice soft recliner and a big sofa too!!! Private bath and shower also. The nurses are so nice and many know me from my extensive time spent on this floor. It is the Orthopedic/Neuro floor.

One very scary thing is that at my tender age (LOL!!!) of 30-something I should not be having pathological fractures, this is something that you see in the very old. I have had Osteoporosis due to the RSD and am quite scared because my bones seem to be just crumbling. Does anyone else have this too????? I have had 2 previous pathological fractures, one of my RSD foot, I was sitting at the computer one day a couple of years ago and stood up, heard a "pop" and had really bad pain in the foot. The x-ray showed a fx of a bone in my foot. Then last July I fell and fx my wrist. Not good

While I was in the hospital I stupidly leaned over the bed rail to get something out of the bed side table and hurt my rib. They did a x-ray and I fx a rib!!!!! HELP - I am falling apart!!!!!! They started using Lidocaine patches on the rib and it helps a little.

OK this is getting long, let me wrap it up!!!! Since the dx was osteomyelitis they said that I would have to be on IV antibiotics for six weeks. Well, Medicare would not pay for a nurse to come to the home and I would have to go to a nursing home for six weeks!!! I just fell apart!!! My infectious disease doc came to see me and said that there is a med taken by mouth called ZYVOX that could be used but it is extremely expensive. I thought, I don't care, I'll pay ANYTHING not to go to a nursing home. It is made by Pfizer and I thought great!!! because I have a Pfizer card that allows me to get meds made by them for $15 co-pay. My Dad called Pfizer to see what the deal was and unfortunately THIS particular med is not covered and my co-pay was going to be $5000.00, yes FIVE THOUSAND dollars!!!!! OMG!!!!!!!. Well, my Dad, who sometimes I think is God, LOL!!!!! got Pfizer to give me the drug for $5.00 YES FIVE dollar co pay!!!! I don't know what he

did or how he did it but I AM HOME!!!!!!!!!!!!!!!

I was on a IV med called Zosyn 3X a day to treat the osteo. I will be on the Zyvox for 6 weeks then they will repeat the bone scans. Glad to be back, I have missed you all. Love Jai