And every day, we thank you, G-d.
Tonight it snowed . . . wet snow. And now it is raining. A mess outside. Rick conveniently fell asleep on "Tracy's recliner" that we bought when she came home from Germany unable to sit in a regular chair, and I had not only Tracy's, but also Carly's (who leaves for L.A. in the morning) dog to walk. It was really gross outside, but I really didn't care. I walked the dogs, put my hood up, and I smiled to myself as my ugly UGGs got soaked. It's like that these days. And Tracy's in Florida with her cousin Marissa at "Casa Block-a" in Sarasota - and it's rainy there too. But still we all smile and we smile brightly. Tracy may have to get a spray tan before she comes home if she wants to rid herself of coma/winter pallor. But she truly looks fabulous, is walking like herself (Charlie Chaplin is history!). And she's getting back to life.
On our way to NY to Marissa's last night, we asked Tracy if she's beginning to accept her new life as though the RSD never happened. She replied that she doesn't - that she thanks G-d every day she wakes up and can just get up out of bed, and without any pain. She is fortunate enough to have no RSD pain, just muscle aches after working out with new resistance exercises in the pool. She's planning to walk a lot in Florida where it's warm. She was really getting bored walking our "indoor house-track". She's been told to stay warm, and she's now in the right place for it, at least for a few days.
She'll be back Monday night, and Tuesday morning, we head down, bright and early, to Dr. Schwartzman's office in Center City, Philadelphia for her next two-day outpatient ketamine boosters. It will have been five weeks since her previous treatment. This will be her last set of infusions before she returns to Bethesda to begin her life anew there, pain-free and able to participate! Before, she couldn't even be a spectator! The miracle of this still-experimental protocol, together with so many prayers, and Tracy and our refusal to think anything but positive thoughts going into this have gotten us through. We continue to think positive, and look forward to the not-too-distant day when she will return to teaching! Dr. Schwartzman will evaluate her and make his recommendations next week. After this booster, she will have none scheduled for three months. Pray that she sticks to the protocol, for that will mean everything is continuing as it is now, the best outcome we could ever have hoped for!!! We are blessed.
Judy, while generally also doing well, is unfortunately having one stubborn area of her body where RSD has not totally released its stubborn grasp - her left arm. She's had five extra ketamine boosters, and although it's "not too bad", more just the allodynia (sensitivity to touch), Dr. S wants to get rid of it before it worsens and/or spreads to other parts of her body. She's waiting for admission for ketamine infusions along with a continuous brachial plexus block to stop this in its tracks. Unfortunately, with the addition of the brachial plexus block, this has to be done by an anesthesiologist with experience doing both simulataneously, and in a hospital where the concomitant therapy is approved, and that is extremely limited. There is a wait time for admission. Meantime, she remains active and has begun aqua therapy this week. Please keep Judy in your prayers so she can get this behind her.
We are so incredibly grateful for Tracy's continued recovery from RSD/CRPS and the effects and the Ketamine coma and the staph pneumonia. It's been 2½ months since her final extubation. It's been such a long ordeal, so many years of pain, but I had always promised Tracy we'd get her through it. I told her we'd find an answer and we did. I didn't know if we ever would, but I did know I'd never give up searching for answers. And finally, we've found her answer. Thank yous to Dr. Craig Winkel who listened to me as I called him at home after his retirement and thought outside of box and sent us to a neurologist. And thank you to my old high school buddy, Dr. Randy Rosenberg, who spent a four-hour first visit with Tracy, did a work-up and diagnosed her with RSD/CRPS. And, of course, to Dr. Robert Schwartzman our RSD maven, and last, but certainly not least, Dr. Hans-Peter Rohr, anesthesiologist at Klinikum Saarbruecken for getting Tracy and Judy through the ketamine coma (and complications). And thank you all for becoming the astute and caring physicians you are.
Now we have a new dilemma regarding Tracy, and it's about opening our protective arms and letting her go. She will have to be very careful not to injure herself, and we know she will be but "things happen". We'll just have to pray for the best. We are nervous at the thought but we can't put her in bubblewrap and expect her to be normal. We know Tracy is nearly ready to return to Bethesda and she cannot wait to live on her own again. I'll drive her back in her own car (she's still not allowed to drive long distances just yet) and help her get set up (food shopping, unpacking, etc.) again. And once done, I'll have to have the strength to kiss her goodby, walk out with just my suitcase, and get on a train for home. May g-d bless her and allow this to happen.
And on the pay-it-foward front, I've been busy with details of the Brooks Family Foundation for RSD/ CRPS. Donations have been coming in steadily, and for that we are grateful. Hopefully, those of you who've contributed have all received your acknowledgements; I am trying to get them out as they come in. If you want to do Honor/Memory donations through the year, this is a great idea. Acknowledgments will be promptly sent to the Honoree or family of the deceased.
Some people have called/e-mailed that they're writing out donations which have not yet arrived. And some we've not heard from at all. We appreciate all donations, and some have been extremely generous. Every bit helps. Please help us to help others. There's so much need. Literally, every day we hear new stories of people suffering with RSD, and some who've been suffering and are just beginning to realize from our site that RSD may be what they have and are seeking neurological help. Dr. S's office is now referring people considering Germany and the ketamine coma to call me. It is such a scary proposition; it's "where the desperate go when the desparate get desperate",(Philadelphia Magazine, May 2007) and we did . . . and others will follow in our footsteps . . . I pray that for them and their family member(s), that life will begin anew. For these reasons, I will keep writing, and running this foundation to create awareness for earlier detection/diagnosis, and to raise funds for research and treatment to help erase the pain!
Today, one of Rick's patients told us her husband has a client whose son underwent the Ketamine coma in Germany five years ago, and he's been pain-free ever since. This is my kind of story!!!!! May Tracy, and soon Judy, gain permanent membership in this club!!
You will receive updates on planned events, etc. Please forward any questions or fund-raising ideas to me at gayle.brooks@verizon.net.
Good night from slushy Bucks County.
Have a safe trip in the morning, Carly!
With Love and Hope,
Gayle
On our way to NY to Marissa's last night, we asked Tracy if she's beginning to accept her new life as though the RSD never happened. She replied that she doesn't - that she thanks G-d every day she wakes up and can just get up out of bed, and without any pain. She is fortunate enough to have no RSD pain, just muscle aches after working out with new resistance exercises in the pool. She's planning to walk a lot in Florida where it's warm. She was really getting bored walking our "indoor house-track". She's been told to stay warm, and she's now in the right place for it, at least for a few days.
She'll be back Monday night, and Tuesday morning, we head down, bright and early, to Dr. Schwartzman's office in Center City, Philadelphia for her next two-day outpatient ketamine boosters. It will have been five weeks since her previous treatment. This will be her last set of infusions before she returns to Bethesda to begin her life anew there, pain-free and able to participate! Before, she couldn't even be a spectator! The miracle of this still-experimental protocol, together with so many prayers, and Tracy and our refusal to think anything but positive thoughts going into this have gotten us through. We continue to think positive, and look forward to the not-too-distant day when she will return to teaching! Dr. Schwartzman will evaluate her and make his recommendations next week. After this booster, she will have none scheduled for three months. Pray that she sticks to the protocol, for that will mean everything is continuing as it is now, the best outcome we could ever have hoped for!!! We are blessed.
Judy, while generally also doing well, is unfortunately having one stubborn area of her body where RSD has not totally released its stubborn grasp - her left arm. She's had five extra ketamine boosters, and although it's "not too bad", more just the allodynia (sensitivity to touch), Dr. S wants to get rid of it before it worsens and/or spreads to other parts of her body. She's waiting for admission for ketamine infusions along with a continuous brachial plexus block to stop this in its tracks. Unfortunately, with the addition of the brachial plexus block, this has to be done by an anesthesiologist with experience doing both simulataneously, and in a hospital where the concomitant therapy is approved, and that is extremely limited. There is a wait time for admission. Meantime, she remains active and has begun aqua therapy this week. Please keep Judy in your prayers so she can get this behind her.
We are so incredibly grateful for Tracy's continued recovery from RSD/CRPS and the effects and the Ketamine coma and the staph pneumonia. It's been 2½ months since her final extubation. It's been such a long ordeal, so many years of pain, but I had always promised Tracy we'd get her through it. I told her we'd find an answer and we did. I didn't know if we ever would, but I did know I'd never give up searching for answers. And finally, we've found her answer. Thank yous to Dr. Craig Winkel who listened to me as I called him at home after his retirement and thought outside of box and sent us to a neurologist. And thank you to my old high school buddy, Dr. Randy Rosenberg, who spent a four-hour first visit with Tracy, did a work-up and diagnosed her with RSD/CRPS. And, of course, to Dr. Robert Schwartzman our RSD maven, and last, but certainly not least, Dr. Hans-Peter Rohr, anesthesiologist at Klinikum Saarbruecken for getting Tracy and Judy through the ketamine coma (and complications). And thank you all for becoming the astute and caring physicians you are.
Now we have a new dilemma regarding Tracy, and it's about opening our protective arms and letting her go. She will have to be very careful not to injure herself, and we know she will be but "things happen". We'll just have to pray for the best. We are nervous at the thought but we can't put her in bubblewrap and expect her to be normal. We know Tracy is nearly ready to return to Bethesda and she cannot wait to live on her own again. I'll drive her back in her own car (she's still not allowed to drive long distances just yet) and help her get set up (food shopping, unpacking, etc.) again. And once done, I'll have to have the strength to kiss her goodby, walk out with just my suitcase, and get on a train for home. May g-d bless her and allow this to happen.
And on the pay-it-foward front, I've been busy with details of the Brooks Family Foundation for RSD/ CRPS. Donations have been coming in steadily, and for that we are grateful. Hopefully, those of you who've contributed have all received your acknowledgements; I am trying to get them out as they come in. If you want to do Honor/Memory donations through the year, this is a great idea. Acknowledgments will be promptly sent to the Honoree or family of the deceased.
Some people have called/e-mailed that they're writing out donations which have not yet arrived. And some we've not heard from at all. We appreciate all donations, and some have been extremely generous. Every bit helps. Please help us to help others. There's so much need. Literally, every day we hear new stories of people suffering with RSD, and some who've been suffering and are just beginning to realize from our site that RSD may be what they have and are seeking neurological help. Dr. S's office is now referring people considering Germany and the ketamine coma to call me. It is such a scary proposition; it's "where the desperate go when the desparate get desperate",(Philadelphia Magazine, May 2007) and we did . . . and others will follow in our footsteps . . . I pray that for them and their family member(s), that life will begin anew. For these reasons, I will keep writing, and running this foundation to create awareness for earlier detection/diagnosis, and to raise funds for research and treatment to help erase the pain!
Today, one of Rick's patients told us her husband has a client whose son underwent the Ketamine coma in Germany five years ago, and he's been pain-free ever since. This is my kind of story!!!!! May Tracy, and soon Judy, gain permanent membership in this club!!
You will receive updates on planned events, etc. Please forward any questions or fund-raising ideas to me at gayle.brooks@verizon.net.
Good night from slushy Bucks County.
Have a safe trip in the morning, Carly!
With Love and Hope,
Gayle
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