Re: home from hosp/bad day

[Guest guest]

Oh sweetie! While I AM glad you're home, I think those Dr's need their heads examined! So, you didn't get your infusion? With Tysabri that can be almost worse then getting it! Dang, don't they read their own medical journals? At least they'll cover your continuing treatment, that's a help. But that's a helluva way to find out they think you have SPMS! What a bunch of insensitive boobs! I am glad to see you posting again, though. I'm sure you have a zillion emails to wade through... HUGS and welcome home!! Akiba -- home from hosp/bad day Dear Friends,I cannot thank you enough for your outpouring oflove, prayers, good thoughts and phone calls--from Cassy andDan a. Not sure if there were others who attempted to call, butsuffice it to say, it was difficult to get through on those 2 phones!So...home from hosp., yesterday, and ready to jump into CDT-todayContinuing day treatment--a structured day program filled withgroup therapy, art therapy, etc., etc. to find out that at FIRSTthat my insurance did not cover, but, after 2 hrs. of my sobbingand their phone calls, it was realized my insurance DOEScover, and all I have is $18 co pay each day....phew! Thenthe interview/intake procedure was tedious and emotional asthey delve into EVERYTHING imaginable! Yet I appreciate thatit is only for the good of serving me. I still have another hour orso of intake tomorrow....Then, part II of my day....going back a bit--I had a neuro consultwhile in the hosp. to make certain I was not having a flare, whichI was not. The consulting neuro was a bit abrupt; ordered a brainand C-spine MRI and when they came out fairly good--one lesionappears smaller!, he looked at me and said, or asked, why wouldyou want to be on a drug that could potentially kill you, i.e.-tysabri!!I was so shocked I was speechless, not to mention being in thehospital for severe depression and suicidal ideation! So--he unilaterallydecided to cancel my infusion for yesterday! Outrageous! Don't you think?My psychiatrist rather sided with the neuro saying, well, you do seemto have what this neuro calls a mild form of MS...I said, he is NOT mydoctor, and he is not the one to chose my treatment, that is my choiceand between me and my neuro... Needless to say, today, after thewhole emotional insurance debacle, I called my new neuro (who I beganseeing in Oct.) and told her the story. The consulting neuro used to sharean office with her, that is an aside, however....anyway, she was livid. She said he had no right to do that, and MRIs do NOT determine MS andlesion load does not dictate severity. Then she hit me between the eyes...At least it FELT like it...She said MS is based primarily on clinical findings,and you (me) definitely have Secondary Progressive! I kinda wished shehad given me a heads up on this back in Oct....once again...speechless, soI was rather unprepared to say ANYthing... I am sorry this is so long winded,it has been a rather unsettling, upsetting 2 wks, and then to come home andnot have the house as I was hoping it would be--picked up a bit...then today'semotional rollercoaster, well....I am still reeling a bit. Perhaps SPMS is NOTwhat I have. I may well call my last neuro who dx'd me originally 12/8/05 (although I believe I have had MS since 19) and see if I can talk with him onwhat he thinks and his opinion....any thoughts on this? Or any thoughts oradvice at all? I'd be grateful for any feedback. Well, long enough here...I love you each and all, and am blessed to have you as family, always, KatePlease visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

[Guest guest]



Welcome home Cate

home from hosp/bad day

Dear Friends,I cannot thank you ! enough for your outpouring oflove, prayers, good thoughts and phon e calls--from Cassy andDan a. Not sure if there were others who attempted to call, butsuffice it to say, it was difficult to get through on those 2 phones!So...home from hosp., yesterday, and ready to jump into CDT-todayContinuing day treatment--a structured day program filled withgroup therapy, art therapy, etc., etc. to find out that at FIRSTthat my insurance did not cover, but, after 2 hrs. of my sobbingand their phone calls, it was realized my insurance DOEScover, and all I have is $18 co pay each day....phew! Thenthe interview/intake procedure was tedious and emotional asthey delve into EVERYTHING imaginable! Yet I appreciate thatit is only for the good of serving me. I still have another hour orso of intake tomorrow....Then, part II of my day....going back a bit--I had a neuro consultwhile in the hosp. to make certain I was not having a flare, whichI was not. The consulting neuro was a bit! abrupt; ordered a brainand C-spine MRI and when they came out fairly good--one lesionappears smaller!, he looked at me and said, or asked, why wouldyou want to be on a drug that could potentially kill you, i.e.-tysabri!!I was so shocked I was speechless, not to mention being in thehospital for severe depression and suicidal ideation! So--he unilaterallydecided to cancel my infusion for yesterday! Outrageous! Don't you think?My psychiatrist rather sided with the neuro saying, well, you do seemto have what this neuro calls a mild form of MS...I said, he is NOT mydoctor, and he is not the one to chose my treatment, that is my choiceand between me and my neuro... Needless to say, today, after thewhole emotional insurance debacle, I called my new neuro (who I beganseeing in Oct.) and told her the story. The consulting neuro used to sharean office with her, that is an aside, however....anyway, she ! was livid. She said he had no right to do that, and MRIs do N OT determine MS andlesion load does not dictate severity. Then she hit me between the eyes...At least it FELT like it...She said MS is based primarily on clinical findings,and you (me) definitely have Secondary Progressive! I kinda wished shehad given me a heads up on this back in Oct....once again...speechless, soI was rather unprepared to say ANYthing... I am sorry this is so long winded,it has been a rather unsettling, upsetting 2 wks, and then to come home andnot have the house as I was hoping it would be--picked up a bit...then today'semotional rollercoaster, well....I am still reeling a bit. Perhaps SPMS is NOTwhat I have. I may well call my last neuro who dx'd me originally 12/8/05 (although I believe I have had MS since 19) and see if I can talk with him onwhat he thinks and his opinion....any thoughts on this? Or any thoughts oradvice at all? I'd be grateful for any feedback. Well, long enough here.! ..I love you each and all, and am blessed to have you as family, always, KatePlease visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

[Guest guest]

Thank you Anne and Akiba for the welcome home!2 wks was a long time! Psych hosp on Thanksgiving....bit of Opity party I had for meself.I managed to wade through 1400+ emails and zap themdown to 14! I actually breezed through them, subject lines,etc., before I 'zapped'. I love you all, Kate home from hosp/bad day> > Dear Friends,I cannot thank you ! enough for your > outpouring of> love, prayers, good thoughts and phon e calls--from > Cassy and> Dan a. Not sure if there were others who attempted to > call, but> suffice it to say, it was difficult to get through on > those 2 phones!> So...home from hosp., yesterday, and ready to jump into > CDT-today> Continuing day treatment--a structured day program > filled with> group therapy, art therapy, etc., etc. to find out that > at FIRST> that my insurance did not cover, but, after 2 hrs. of > my sobbing> and their phone calls, it was realized my insurance DOES> cover, and all I have is $18 co pay each day....phew! Then> the interview/intake procedure was tedious and emotional as> they delve into EVERYTHING imaginable! Yet I appreciate that> it is only for the good of serving me. I still have > another hour or> so of intake tomorrow....> Then, part II of my day....going back a bit--I had a > neuro consult> while in the hosp. to make certain I was not having a > flare, which> I was not. The consulting neuro was a bit! abrupt; > ordered a brain> and C-spine MRI and when they came out fairly good--one lesion> appears smaller!, he looked at me and said, or asked, > why would> you want to be on a drug that could potentially kill > you, i.e.-tysabri!!> I was so shocked I was speechless, not to mention being > in the> hospital for severe depression and suicidal ideation! So-> -he unilaterally> decided to cancel my infusion for yesterday! Outrageous! > Don't you think?> My psychiatrist rather sided with the neuro saying, > well, you do seem> to have what this neuro calls a mild form of MS...I > said, he is NOT my> doctor, and he is not the one to chose my treatment, > that is my choice> and between me and my neuro... Needless to say, today, > after the> whole emotional insurance debacle, I called my new neuro > (who I began> seeing in Oct.) and told her the story. The consulting > neuro used to share> an office with her, that is an aside, however....anyway, > she ! was livid. She > said he had no right to do that, and MRIs do N OT > determine MS and> lesion load does not dictate severity. Then she hit me > between the eyes...> At least it FELT like it...She said MS is based > primarily on clinical findings,> and you (me) definitely have Secondary Progressive! I > kinda wished she> had given me a heads up on this back in Oct....once > again...speechless, so> I was rather unprepared to say ANYthing... I am sorry > this is so long winded,> it has been a rather unsettling, upsetting 2 wks, and > then to come home and> not have the house as I was hoping it would be--picked > up a bit...then today's> emotional rollercoaster, well....I am still reeling a > bit. Perhaps SPMS is NOT> what I have. I may well call my last neuro who dx'd me > originally 12/8/05 (> although I believe I have had MS since 19) and see if I > can talk with him on> what he thinks and his opinion....any thoughts on this? > Or any thoughts or> advice at all? I'd be grateful for any feedback. Well, > long enough here.! ..> I love you each and all, and am blessed to have you as > family, always, Kate> > > > > > > > > > > > > > > Please visit: http://www.bicycleman.com> awesome guy, fantastic site. All types of bicyles, many > recumbents; perfect for an MS Bike Tour!> > > > > > > > > > Please visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

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[Guest guest]

Welcome home, to your own home,

and home here, too!We have been pulling for you, Kate!

Love,

n

[Guest guest]

Kate I am glad you are home. Continued prayers.

Hugs

nne

Dear Friends,I cannot thank you enough for your outpouring oflove, prayers, good thoughts and phone calls--from Cassy andDan a. Not sure if there were others who attempted to call, but

suffice it to say, it was difficult to get through on those 2 phones!So...home from hosp., yesterday, and ready to jump into CDT-todayContinuing day treatment--a structured day program filled withgroup therapy, art therapy, etc., etc. to find out that at FIRST

that my insurance did not cover, but, after 2 hrs. of my sobbingand their phone calls, it was realized my insurance DOEScover, and all I have is $18 co pay each day....phew! Thenthe interview/intake procedure was tedious and emotional as

they delve into EVERYTHING imaginable! Yet I appreciate thatit is only for the good of serving me. I still have another hour orso of intake tomorrow....Then, part II of my day....going back a bit--I had a neuro consult

while in the hosp. to make certain I was not having a flare, whichI was not. The consulting neuro was a bit abrupt; ordered a brainand C-spine MRI and when they came out fairly good--one lesionappears smaller!, he looked at me and said, or asked, why would

you want to be on a drug that could potentially kill you, i.e.-tysabri!!I was so shocked I was speechless, not to mention being in thehospital for severe depression and suicidal ideation! So--he unilaterallydecided to cancel my infusion for yesterday! Outrageous! Don't you think?

My psychiatrist rather sided with the neuro saying, well, you do seemto have what this neuro calls a mild form of MS...I said, he is NOT mydoctor, and he is not the one to chose my treatment, that is my choice

and between me and my neuro... Needless to say, today, after thewhole emotional insurance debacle, I called my new neuro (who I beganseeing in Oct.) and told her the story. The consulting neuro used to sharean office with her, that is an aside, however....anyway, she was livid. She

said he had no right to do that, and MRIs do NOT determine MS andlesion load does not dictate severity. Then she hit me between the eyes...At least it FELT like it...She said MS is based primarily on clinical findings,

and you (me) definitely have Secondary Progressive! I kinda wished shehad given me a heads up on this back in Oct....once again...speechless, soI was rather unprepared to say ANYthing... I am sorry this is so long winded,

it has been a rather unsettling, upsetting 2 wks, and then to come home andnot have the house as I was hoping it would be--picked up a bit...then today'semotional rollercoaster, well....I am still reeling a bit. Perhaps SPMS is NOT

what I have. I may well call my last neuro who dx'd me originally 12/8/05 (although I believe I have had MS since 19) and see if I can talk with him onwhat he thinks and his opinion....any thoughts on this? Or any thoughts or

advice at all? I'd be grateful for any feedback. Well, long enough here...I love you each and all, and am blessed to have you as family, always, Kate

Please visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

-- Breast Cancer Patients Soul Mates for Life

http://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.group.yahoo.com/group/AnxietyDepressionandBreastCancer

Angel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com

[Guest guest]



so who better than us to have a pity party or two -

home from hosp/bad day> > Dear Friends,I cannot thank you ! enough for your > outpouring of> ! love, prayers, good thoughts and phon e calls--from > Cass y and> Dan a. Not sure if there were others who attempted to > call, but> suffice it to say, it was difficult to get through on > those 2 phones!> So...home from hosp., yesterday, and ready to jump into > CDT-today> Continuing day treatment--a structured day program > filled with> group therapy, art therapy, etc., etc. to find out that > at FIRST> that my insurance did not cover, but, after 2 hrs. of > my sobbing> and their phone calls, it was realized my insurance DOES> cover, and all I have is $18 co pay each day....phew! Then> the interview/intake procedure was tedious and emotional as> they delve into EVERYTHING imaginable! Yet I appreciate that> it is only for the good of serving me. I still have > another hour or> so of intake tomorrow....> ! Then, part II of my day....going back a bit--I had a > neuro consult> while in the hosp. to make certain I was not having a > flare, which> I was not. The consulting neuro was a bit! abrupt; > ordered a brain> and C-spine MRI and when they came out fairly good--one lesion> appears smaller!, he looked at me and said, or asked, > why would> you want to be on a drug that could potentially kill > you, i.e.-tysabri!!> I was so shocked I was speechless, not to mention being > in the> hospital for severe depression and suicidal ideation! So-> -he unilaterally> decided to cancel my infusion for yesterday! Outrageous! > Don't you think?> My psychiatrist rather sided with the neuro saying, > well, you do seem> to have what this neuro calls a mild form of MS...I > said, he ! is NOT my> doctor, and he is not the one to chose my tre atment, > that is my choice> and between me and my neuro... Needless to say, today, > after the> whole emotional insurance debacle, I called my new neuro > (who I began> seeing in Oct.) and told her the story. The consulting > neuro used to share> an office with her, that is an aside, however....anyway, > she ! was livid. She > said he had no right to do that, and MRIs do N OT > determine MS and> lesion load does not dictate severity. Then she hit me > between the eyes...> At least it FELT like it...She said MS is based > primarily on clinical findings,> and you (me) definitely have Secondary Progressive! I > kinda wished she> had given me a heads up on this back in Oct....once > again...speechless, so> I was rather unprepared to say ANYthing... I am sorry > thi! s is so long winded,> it has been a rather unsettling, upsetting 2 wks, and > then to come home and> not have the house as I was hoping it would be--picked > up a bit...then today's> emotional rollercoaster, well....I am still reeling a > bit. Perhaps SPMS is NOT> what I have. I may well call my last neuro who dx'd me > originally 12/8/05 (> although I believe I have had MS since 19) and see if I > can talk with him on> what he thinks and his opinion....any thoughts on this? > Or any thoughts or> advice at all? I'd be grateful for any feedback. Well, > long enough here.! ..> I love you each and all, and am blessed to have you as > family, always, Kate> > > > > > > > > > > > > > > Please visit: http:! //www.bicycleman.com> awesome guy, fantastic site. All types of bicyles, many > recumbents; perfect for an MS Bike Tour!> > > > > > > > > > Please visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

[Guest guest]

Dear Kate,

I was so sorry to hear that you had been in the hospital, but I am so pleased to hear that you are out now. I haven't been online much since my computer crashed. Only been able to send emails through the cell phone. So I have missed so much. I'm using my roommates computer, that she has so graciously offered for the day. I wanted to be sure to remember to get to you and tell you that you are always in my thoughts and prayers. I hope you are doing much better.

Have a wonderful holiday season.

Love and blessings...

Val

MS and BPD Awareness

valsafemail@...

Woomail.com/Val

Subject: home from hosp/bad dayTo: MSersLife Date: Wednesday, December 3, 2008, 1:54 AM

Dear Friends,I cannot thank you enough for your outpouring oflove, prayers, good thoughts and phone calls--from Cassy andDan a. Not sure if there were others who attempted to call, butsuffice it to say, it was difficult to get through on those 2 phones!So...home from hosp., yesterday, and ready to jump into CDT-todayContinuing day treatment--a structured day program filled withgroup therapy, art therapy, etc., etc. to find out that at FIRSTthat my insurance did not cover, but, after 2 hrs. of my sobbingand their phone calls, it was realized my insurance DOEScover, and all I have is $18 co pay each day....phew! Thenthe interview/intake procedure was tedious and emotional asthey delve into EVERYTHING imaginable! Yet I appreciate thatit is only for the good of serving me. I still have another hour orso of intake tomorrow....Then, part

II of my day....going back a bit--I had a neuro consultwhile in the hosp. to make certain I was not having a flare, whichI was not. The consulting neuro was a bit abrupt; ordered a brainand C-spine MRI and when they came out fairly good--one lesionappears smaller!, he looked at me and said, or asked, why wouldyou want to be on a drug that could potentially kill you, i.e.-tysabri! !I was so shocked I was speechless, not to mention being in thehospital for severe depression and suicidal ideation! So--he unilaterallydecided to cancel my infusion for yesterday! Outrageous! Don't you think?My psychiatrist rather sided with the neuro saying, well, you do seemto have what this neuro calls a mild form of MS...I said, he is NOT mydoctor, and he is not the one to chose my treatment, that is my choiceand between me and my neuro... Needless to say, today, after thewhole emotional insurance

debacle, I called my new neuro (who I beganseeing in Oct.) and told her the story. The consulting neuro used to sharean office with her, that is an aside, however....anyway, she was livid. She said he had no right to do that, and MRIs do NOT determine MS andlesion load does not dictate severity. Then she hit me between the eyes...At least it FELT like it...She said MS is based primarily on clinical findings,and you (me) definitely have Secondary Progressive! I kinda wished shehad given me a heads up on this back in Oct....once again...speechless, soI was rather unprepared to say ANYthing... I am sorry this is so long winded,it has been a rather unsettling, upsetting 2 wks, and then to come home andnot have the house as I was hoping it would be--picked up a bit...then today'semotional rollercoaster, well....I am still reeling a bit. Perhaps SPMS is NOTwhat I have. I may well call my

last neuro who dx'd me originally 12/8/05 (although I believe I have had MS since 19) and see if I can talk with him onwhat he thinks and his opinion....any thoughts on this? Or any thoughts oradvice at all? I'd be grateful for any feedback. Well, long enough here...I love you each and all, and am blessed to have you as family, always, KatePlease visit: http://www.bicyclem an.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

[Guest guest]

Thank you so much, Val. Your words andsentiments mean so very much to me! Ihope your new place is everything yourheart desires. Prayers that your son andhusband are happy and healthy as well.Blessings to you during this wonderfulseason too! love, Kate home from hosp/bad day> To: MSersLife > Date: Wednesday, December 3, 2008, 1:54 AM> > > > > > > Dear Friends,I cannot thank you enough for your outpouring of> love, prayers, good thoughts and phone calls--from Cassy and> Dan a. Not sure if there were others who attempted to call, but> suffice it to say, it was difficult to get through on those 2 phones!> So...home from hosp., yesterday, and ready to jump into CDT-today> Continuing day treatment--a structured day program filled with> group therapy, art therapy, etc., etc. to find out that at FIRST> that my insurance did not cover, but, after 2 hrs. of my sobbing> and their phone calls, it was realized my insurance DOES> cover, and all I have is $18 co pay each day....phew! Then> the interview/intake procedure was tedious and emotional as> they delve into EVERYTHING imaginable! Yet I appreciate that> it is only for the good of serving me. I still have another hour or> so of intake tomorrow....> Then, part II of my day....going back a bit--I had a neuro consult> while in the hosp. to make certain I was not having a flare, which> I was not. The consulting neuro was a bit abrupt; ordered a brain> and C-spine MRI and when they came out fairly good--one lesion> appears smaller!, he looked at me and said, or asked, why would> you want to be on a drug that could potentially kill you, i.e.-> tysabri! !> I was so shocked I was speechless, not to mention being in the> hospital for severe depression and suicidal ideation! So--he > unilaterallydecided to cancel my infusion for yesterday! > Outrageous! Don't you think?> My psychiatrist rather sided with the neuro saying, well, you do seem> to have what this neuro calls a mild form of MS...I said, he is > NOT my> doctor, and he is not the one to chose my treatment, that is my choice> and between me and my neuro... Needless to say, today, after the> whole emotional insurance debacle, I called my new neuro (who I began> seeing in Oct.) and told her the story. The consulting > neuro used to share> an office with her, that is an aside, however....anyway, she was > livid. She > said he had no right to do that, and MRIs do NOT determine MS and> lesion load does not dictate severity. Then she hit me between > the eyes...> At least it FELT like it...She said MS is based primarily on > clinical findings,> and you (me) definitely have Secondary Progressive! I > kinda wished she> had given me a heads up on this back in Oct....once > again...speechless, so> I was rather unprepared to say ANYthing... I am sorry this is so > long winded,> it has been a rather unsettling, upsetting 2 wks, and then to > come home and> not have the house as I was hoping it would be--picked up a > bit...then today's> emotional rollercoaster, well....I am still reeling a bit. > Perhaps SPMS is NOT> what I have. I may well call my last neuro who dx'd me > originally 12/8/05 (> although I believe I have had MS since 19) and see if I can talk > with him on> what he thinks and his opinion....any thoughts on this? Or any > thoughts or> advice at all? I'd be grateful for any feedback. Well, long > enough here...> I love you each and all, and am blessed to have you as family, > always, Kate> > > > > > > > > > > > > > > Please visit: http://www.bicyclem an.com> awesome guy, fantastic site. All types of bicyles, many > recumbents; perfect for an MS Bike Tour!> > > > > > > > > > > > > > > > > Please visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

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