Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 Hugs Girl.... wish I could get on the next flight over there... You know you are in my thoughts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 I am trying to avoid a crash - my sinuses are really painful, and I went on Mucinex and Rhinocort to try to clear them up. I got dizziness and confusion episodes - thought it was the mito, then the cheek and head pain started. Medicines make it feel better, but they wear off a lot sooner than they are supposed to... I'm sorry you are going through so much, take care of yourself, and get the help you need. Regarding the pain mgmt scheduling issues, this might sound strange, but could you possibly talk to the doctor himself and schedule directly with him? I hope you avoid the hospital, you guys are in our thoughts. I have 3 kids too, although lower maintenance (well, except for the baby's pneumonia episode, that was scary), so I hear you about being too busy to be sick. My husband is actually decent about waiting on me when I am ill, so I'm in luck there (and also not picky about the house being clean Take care, RH > > I guess I held out longer than I thought I would. was sick as > you all know for 3 weeks and in the hospital last week. He is doing a > bit better and attending the medical school he used to go to before > kindergarten. He will probably be back to Kinndergarten sometime next > week for 1/2 days until he back to norm. > > I have been having some trouble breathing for 5 or so days now and I > have been to the doc everyday this week. He started me on oral and IM > shots of prednisone Monday and Tuesday. Then we accessed my Port last > night and moved to IV Medrol twice daily with IV D10. Today we are > increasing the IV Medrol to 3 times per day and running the D10 > continously. I will clamp off the port line tomorrow morning and go > back to the office to see if I can avoid an admission over the > weekend. He is worried about all the flu and illness in the hosp > right now. He also has me on Oxygen at home via cannula. This is so > hard to deal with right now. Feeling like crap plus taking care of a > sick child. Taking care of 3 kids, a house and a husband is hard all > the time but right now I am overwhelmed and at the end of my rope! > > Oh ya, you will all love this one! I see a pain management doc for > the chronic neck, head and back pain. He has had 2 people quite in > the last 3 weeks, These are the existing patient scheduler and the > epidural/nerve block sheduler. I was supose to be scheduled for a > nerve block of the cervical nerves 3 weeks ago at the last appt. I > was not allowed to make a f/u appt because the block would be done > first. You can't get meds called in for refills-you have to come in > for a f/u appt. I have called for 3 weeks to make the block appt only > to find out YESTERDAY that person quite as well as the f/u appt > scheduler-SO I can't get the block or refills of meds!!!! You can > imagine how I am feeling now! Three weeks of taking care of a very > sick kid--NO sleep----Can't breath---Hypoxia, pulse Ox of 85 and a > spliting headache all at the same time!!!!! > > Sorry for the rant but this is one over it Mom and Chick! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 I wish I could help in some way. I'm afraid all I can do is listen and send lots of cyber hugs. Please e-mail me privately if you want to. Remember that you can vent to the group whenever. Can you get some additional nursing or respite help while you are doing so poorly? Of course, setting it up and getting approved is more taxing to you than not having it. Hugs, laurie > > Reply-To: > Date: Thu, 03 Mar 2005 18:49:01 -0000 > To: > Subject: Crash in Progress > > > > I guess I held out longer than I thought I would. was sick as > you all know for 3 weeks and in the hospital last week. He is doing a > bit better and attending the medical school he used to go to before > kindergarten. He will probably be back to Kinndergarten sometime next > week for 1/2 days until he back to norm. > > I have been having some trouble breathing for 5 or so days now and I > have been to the doc everyday this week. He started me on oral and IM > shots of prednisone Monday and Tuesday. Then we accessed my Port last > night and moved to IV Medrol twice daily with IV D10. Today we are > increasing the IV Medrol to 3 times per day and running the D10 > continously. I will clamp off the port line tomorrow morning and go > back to the office to see if I can avoid an admission over the > weekend. He is worried about all the flu and illness in the hosp > right now. He also has me on Oxygen at home via cannula. This is so > hard to deal with right now. Feeling like crap plus taking care of a > sick child. Taking care of 3 kids, a house and a husband is hard all > the time but right now I am overwhelmed and at the end of my rope! > > Oh ya, you will all love this one! I see a pain management doc for > the chronic neck, head and back pain. He has had 2 people quite in > the last 3 weeks, These are the existing patient scheduler and the > epidural/nerve block sheduler. I was supose to be scheduled for a > nerve block of the cervical nerves 3 weeks ago at the last appt. I > was not allowed to make a f/u appt because the block would be done > first. You can't get meds called in for refills-you have to come in > for a f/u appt. I have called for 3 weeks to make the block appt only > to find out YESTERDAY that person quite as well as the f/u appt > scheduler-SO I can't get the block or refills of meds!!!! You can > imagine how I am feeling now! Three weeks of taking care of a very > sick kid--NO sleep----Can't breath---Hypoxia, pulse Ox of 85 and a > spliting headache all at the same time!!!!! > > Sorry for the rant but this is one over it Mom and Chick! > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 So sorry . I know how hard stress can be and you have had enough for 10 healthy people. I hope things improve for you soon. Lea Crash in Progress Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Here is a Big Sweet Thanks to all my Cyber Buddies! I am doing better this morning. I just got back from the doc, day 4 and will be back on Monday so it can be a perfect score of 5 visits and a nice round co-pay figure as well, LOL! He has me on the IV Push of Medrol via the Port Every 6hrs round the clock, with IV D10 drip at a rate of 100c for 10 hrs (A full Liter of Fluids overnight so I don't have to lug the pole all day, (AMEN to that!) which is what he and Dr Cohen have discussed in the past as a protocol that they sometimes may need to take when " we get in over our heads " here.) We all know that any Prednisone can increase your blood sugar levels so the additional D10 can really make it unstable. Dr Cohen also only likes using prednisone or any steroid as a last resort drug as I believe he mentions in his Primer in the UMDF Compendium because we Mito patients can have a harder time than the " normal patient " tapering off and decreasing the doses. I am also closely monitoring my blood sugar because I don't need to worry about needing insulin regulation in addition to all the other stuff. Good news is, that I FINALLY have an appt set for Wed w/ the pain doc who will do the block. I have 2 set up so I would appreciate some Prayers to help heal some of the chronic pain. Thanks again to all of my wonderful friends who are like an understanding family ! ps, special note to When you do come out to see me in Fl------and we will get together someday for sure!--------I will have to set you up and appt with the Physical Therapist from Heaven to help your neck too......hehehe! > Hugs Girl.... > wish I could get on the next flight over there... > You know you are in my thoughts > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 I pray for your good luck with the pain block, I will be praying for you and for good results, my foster-daughter, Debbie says she also will be keeping you in her prayers. She is just recovering from a pain block. I will put you on my churches prayer line, if I have your permission. Good Luck and God Bless!! Dolores mitomomtoo mitomomtoo@...> wrote: Here is a Big Sweet Thanks to all my Cyber Buddies! I am doing better this morning. I just got back from the doc, day 4 and will be back on Monday so it can be a perfect score of 5 visits and a nice round co-pay figure as well, LOL! He has me on the IV Push of Medrol via the Port Every 6hrs round the clock, with IV D10 drip at a rate of 100c for 10 hrs (A full Liter of Fluids overnight so I don't have to lug the pole all day, (AMEN to that!) which is what he and Dr Cohen have discussed in the past as a protocol that they sometimes may need to take when " we get in over our heads " here.) We all know that any Prednisone can increase your blood sugar levels so the additional D10 can really make it unstable. Dr Cohen also only likes using prednisone or any steroid as a last resort drug as I believe he mentions in his Primer in the UMDF Compendium because we Mito patients can have a harder time than the " normal patient " tapering off and decreasing the doses. I am also closely monitoring my blood sugar because I don't need to worry about needing insulin regulation in addition to all the other stuff. Good news is, that I FINALLY have an appt set for Wed w/ the pain doc who will do the block. I have 2 set up so I would appreciate some Prayers to help heal some of the chronic pain. Thanks again to all of my wonderful friends who are like an understanding family ! ps, special note to When you do come out to see me in Fl------and we will get together someday for sure!--------I will have to set you up and appt with the Physical Therapist from Heaven to help your neck too......hehehe! > Hugs Girl.... > wish I could get on the next flight over there... > You know you are in my thoughts > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 , Now thats true friendship..sharing the PT guy.... Ill be there sweetie..you made my day... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 , I hope you are doing better. Sounds like its time for mom to recoup. I'm glad to hear is doing better. I've been reading some of the posts, so I saw what trouble you've been having, I'm sorry to hear things have been going so bad.I wanted to email sooner but Leighann's been going through another fight lately with a nasty stomach bug shes picked up. I've been watching her close, but I'm really scared shes going through a crash again. I had to tell you, we went to see Dr. Cimino Wednesday, he is beyond incredible. He is definately one of the best doctors I have ever met. He's not with our insurance, but he gave us his opinion, recomendations on testing that needed to be done, and when the muscle biopsy is to be done, he will help with the insurance company to make sure it gets done in Atlanta, also will refer her there to get her in. He's going to help point her doctors in the right direction. Leighann's neuro is a friend of his but he told us he does not agree with him on Leighann's care. Just amazing to me. I think if he was on our insurance and Leighann could have him as her regular neuro we would be a lot further than what we are. He's definately amazing. Definately a great doctor to have for help. He's willing to do more to help than the doctors we can see all the time. Thanks for the good words about him, he's awesome. Again, I hope you are breathing easier, and is still doing great, and that things can calm down in your house soon. Lois > [Original Message] > > To: > > Date: 3/3/2005 1:49:28 PM > Subject: Crash in Progress > > > > I guess I held out longer than I thought I would. was sick as > you all know for 3 weeks and in the hospital last week. He is doing a > bit better and attending the medical school he used to go to before > kindergarten. He will probably be back to Kinndergarten sometime next > week for 1/2 days until he back to norm. > > I have been having some trouble breathing for 5 or so days now and I > have been to the doc everyday this week. He started me on oral and IM > shots of prednisone Monday and Tuesday. Then we accessed my Port last > night and moved to IV Medrol twice daily with IV D10. Today we are > increasing the IV Medrol to 3 times per day and running the D10 > continously. I will clamp off the port line tomorrow morning and go > back to the office to see if I can avoid an admission over the > weekend. He is worried about all the flu and illness in the hosp > right now. He also has me on Oxygen at home via cannula. This is so > hard to deal with right now. Feeling like crap plus taking care of a > sick child. Taking care of 3 kids, a house and a husband is hard all > the time but right now I am overwhelmed and at the end of my rope! > > Oh ya, you will all love this one! I see a pain management doc for > the chronic neck, head and back pain. He has had 2 people quite in > the last 3 weeks, These are the existing patient scheduler and the > epidural/nerve block sheduler. I was supose to be scheduled for a > nerve block of the cervical nerves 3 weeks ago at the last appt. I > was not allowed to make a f/u appt because the block would be done > first. You can't get meds called in for refills-you have to come in > for a f/u appt. I have called for 3 weeks to make the block appt only > to find out YESTERDAY that person quite as well as the f/u appt > scheduler-SO I can't get the block or refills of meds!!!! You can > imagine how I am feeling now! Three weeks of taking care of a very > sick kid--NO sleep----Can't breath---Hypoxia, pulse Ox of 85 and a > spliting headache all at the same time!!!!! > > Sorry for the rant but this is one over it Mom and Chick! > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Lois I am so glad you have found such a wonderful doctor. laurie > > > , > I hope you are doing better. Sounds like its time for mom > to recoup. I'm glad to hear is doing better. I've been > reading some of the posts, so I saw what trouble you've been > having, I'm sorry to hear things have been going so bad.I > wanted to email sooner but Leighann's been going through > another fight lately with a nasty stomach bug shes picked up. > I've been watching her close, but I'm really scared shes going > through a crash again. > I had to tell you, we went to see Dr. Cimino Wednesday, he > is beyond incredible. He is definately one of the best doctors > I have ever met. He's not with our insurance, but he gave us > his opinion, recomendations on testing that needed to be done, > and when the muscle biopsy is to be done, he will help with the > insurance company to make sure it gets done in Atlanta, also will > refer her there to get her in. He's going to help point her doctors > in the right direction. Leighann's neuro is a friend of his but he > told us he does not agree with him on Leighann's care. Just > amazing to me. I think if he was on our insurance and Leighann > could have him as her regular neuro we would be a lot further > than what we are. He's definately amazing. Definately a great > doctor to have for help. He's willing to do more to help than > the doctors we can see all the time. Thanks for the good words > about him, he's awesome. > Again, I hope you are breathing easier, and is still doing > great, and that things can calm down in your house soon. > Lois > > > > [Original Message] > > > > To: > > > Date: 3/3/2005 1:49:28 PM > > Subject: Crash in Progress > > > > > > > > I guess I held out longer than I thought I would. was sick as > > you all know for 3 weeks and in the hospital last week. He is doing a > > bit better and attending the medical school he used to go to before > > kindergarten. He will probably be back to Kinndergarten sometime next > > week for 1/2 days until he back to norm. > > > > I have been having some trouble breathing for 5 or so days now and I > > have been to the doc everyday this week. He started me on oral and IM > > shots of prednisone Monday and Tuesday. Then we accessed my Port last > > night and moved to IV Medrol twice daily with IV D10. Today we are > > increasing the IV Medrol to 3 times per day and running the D10 > > continously. I will clamp off the port line tomorrow morning and go > > back to the office to see if I can avoid an admission over the > > weekend. He is worried about all the flu and illness in the hosp > > right now. He also has me on Oxygen at home via cannula. This is so > > hard to deal with right now. Feeling like crap plus taking care of a > > sick child. Taking care of 3 kids, a house and a husband is hard all > > the time but right now I am overwhelmed and at the end of my rope! > > > > Oh ya, you will all love this one! I see a pain management doc for > > the chronic neck, head and back pain. He has had 2 people quite in > > the last 3 weeks, These are the existing patient scheduler and the > > epidural/nerve block sheduler. I was supose to be scheduled for a > > nerve block of the cervical nerves 3 weeks ago at the last appt. I > > was not allowed to make a f/u appt because the block would be done > > first. You can't get meds called in for refills-you have to come in > > for a f/u appt. I have called for 3 weeks to make the block appt only > > to find out YESTERDAY that person quite as well as the f/u appt > > scheduler-SO I can't get the block or refills of meds!!!! You can > > imagine how I am feeling now! Three weeks of taking care of a very > > sick kid--NO sleep----Can't breath---Hypoxia, pulse Ox of 85 and a > > spliting headache all at the same time!!!!! > > > > Sorry for the rant but this is one over it Mom and Chick! > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded > of their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one > is automatically moderated or removed depending on the severity of the > attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Lois I am so glad you have found such a wonderful doctor. laurie > > > , > I hope you are doing better. Sounds like its time for mom > to recoup. I'm glad to hear is doing better. I've been > reading some of the posts, so I saw what trouble you've been > having, I'm sorry to hear things have been going so bad.I > wanted to email sooner but Leighann's been going through > another fight lately with a nasty stomach bug shes picked up. > I've been watching her close, but I'm really scared shes going > through a crash again. > I had to tell you, we went to see Dr. Cimino Wednesday, he > is beyond incredible. He is definately one of the best doctors > I have ever met. He's not with our insurance, but he gave us > his opinion, recomendations on testing that needed to be done, > and when the muscle biopsy is to be done, he will help with the > insurance company to make sure it gets done in Atlanta, also will > refer her there to get her in. He's going to help point her doctors > in the right direction. Leighann's neuro is a friend of his but he > told us he does not agree with him on Leighann's care. Just > amazing to me. I think if he was on our insurance and Leighann > could have him as her regular neuro we would be a lot further > than what we are. He's definately amazing. Definately a great > doctor to have for help. He's willing to do more to help than > the doctors we can see all the time. Thanks for the good words > about him, he's awesome. > Again, I hope you are breathing easier, and is still doing > great, and that things can calm down in your house soon. > Lois > > > > [Original Message] > > > > To: > > > Date: 3/3/2005 1:49:28 PM > > Subject: Crash in Progress > > > > > > > > I guess I held out longer than I thought I would. was sick as > > you all know for 3 weeks and in the hospital last week. He is doing a > > bit better and attending the medical school he used to go to before > > kindergarten. He will probably be back to Kinndergarten sometime next > > week for 1/2 days until he back to norm. > > > > I have been having some trouble breathing for 5 or so days now and I > > have been to the doc everyday this week. He started me on oral and IM > > shots of prednisone Monday and Tuesday. Then we accessed my Port last > > night and moved to IV Medrol twice daily with IV D10. Today we are > > increasing the IV Medrol to 3 times per day and running the D10 > > continously. I will clamp off the port line tomorrow morning and go > > back to the office to see if I can avoid an admission over the > > weekend. He is worried about all the flu and illness in the hosp > > right now. He also has me on Oxygen at home via cannula. This is so > > hard to deal with right now. Feeling like crap plus taking care of a > > sick child. Taking care of 3 kids, a house and a husband is hard all > > the time but right now I am overwhelmed and at the end of my rope! > > > > Oh ya, you will all love this one! I see a pain management doc for > > the chronic neck, head and back pain. He has had 2 people quite in > > the last 3 weeks, These are the existing patient scheduler and the > > epidural/nerve block sheduler. I was supose to be scheduled for a > > nerve block of the cervical nerves 3 weeks ago at the last appt. I > > was not allowed to make a f/u appt because the block would be done > > first. You can't get meds called in for refills-you have to come in > > for a f/u appt. I have called for 3 weeks to make the block appt only > > to find out YESTERDAY that person quite as well as the f/u appt > > scheduler-SO I can't get the block or refills of meds!!!! You can > > imagine how I am feeling now! Three weeks of taking care of a very > > sick kid--NO sleep----Can't breath---Hypoxia, pulse Ox of 85 and a > > spliting headache all at the same time!!!!! > > > > Sorry for the rant but this is one over it Mom and Chick! > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded > of their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one > is automatically moderated or removed depending on the severity of the > attack. > > > > Quote Link to comment Share on other sites More sharing options...
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