Need to vent

[Guest guest]

Sorry to hear about your doctor! We live in South Africa and our ped had also

never heard of . He diagnosed virus after virus but the good thing is that

after about 6 months of this he agreed that it must be something else and that

he is out of his depth and referred me to a pred rheum who diagnosed Emma with

. I still use that ped who wasn't able to diagnose and he has always been

interested in learning and has given us scripts for steroids based on his trust

in my research. So you can find supportive doctors even if they don't know

yet. I think you need to go find a new ped!

Take care

Inga

__________________________________________________________

Not happy with your email address?.

Get the one you really want - millions of new email addresses available now at

http://uk.docs./ymail/new.html

[Guest guest]

Sorry to hear about your doctor! We live in South Africa and our ped had also

never heard of . He diagnosed virus after virus but the good thing is that

after about 6 months of this he agreed that it must be something else and that

he is out of his depth and referred me to a pred rheum who diagnosed Emma with

. I still use that ped who wasn't able to diagnose and he has always been

interested in learning and has given us scripts for steroids based on his trust

in my research. So you can find supportive doctors even if they don't know

yet. I think you need to go find a new ped!

Take care

Inga

__________________________________________________________

Not happy with your email address?.

Get the one you really want - millions of new email addresses available now at

http://uk.docs./ymail/new.html

[Guest guest]

are you very far from cincinnati?? Sounds like its time for a new

pediatrician...I did the same thing with mine. I took my daughter to Children's

Hospital even though she felt " It wasn't necessary " - They kept her for 4

days..If I wouldn't of, my daughter would still be fevering! We had an

excellent pediatrician when we lived in Cincinnati..we always called him our

family angel! We have been away from Cincinnati for 13 years and my kids still

remember him and I called him up when we were having so many problems and it was

like we never left - he remembered us and the kids! If the tonsils removing

didn't work, we were going to pack up and take Sami to him.

Trish

[Guest guest]

are you very far from cincinnati?? Sounds like its time for a new

pediatrician...I did the same thing with mine. I took my daughter to Children's

Hospital even though she felt " It wasn't necessary " - They kept her for 4

days..If I wouldn't of, my daughter would still be fevering! We had an

excellent pediatrician when we lived in Cincinnati..we always called him our

family angel! We have been away from Cincinnati for 13 years and my kids still

remember him and I called him up when we were having so many problems and it was

like we never left - he remembered us and the kids! If the tonsils removing

didn't work, we were going to pack up and take Sami to him.

Trish

[Guest guest]

Eirc,

My son was just diagnosed at Children's Memorial Hospital in Chicago.

Our pediatrician referred us there (to Infectious Disease) after he

couldn't identify anything after a few visits. They were VERY familiar

with and gave us a prescription for prednisone (is that different

than prednisolone?). Really all they did was a quick physical exam

(nothing different than a pediatrician would do), listen to my

history/account and review the recent (and comprehensive) blood work

ordered by our pediatrician. I actually wished they had been a bit

more thorough in ruling out other things.

Anyway, they are familiar with (even the nurse that came in

before the doctors said she suspected what the diagnosis would be).

They are anti t & a, as they feel that hasn't really been proven to

eliminate the problem, but they do prescribe prednisone.

My son is going on 11 and does not necessarily present in the usual

manner. He's a bit older than most and his fevers are very manageable

(as they rarely top 101-102). So far, giving prednisone at the first

signs seems to be working and has not increased frequency (although

we've only given it twice now).

Anyway, good luck with your search.

a

[Guest guest]

Eirc,

My son was just diagnosed at Children's Memorial Hospital in Chicago.

Our pediatrician referred us there (to Infectious Disease) after he

couldn't identify anything after a few visits. They were VERY familiar

with and gave us a prescription for prednisone (is that different

than prednisolone?). Really all they did was a quick physical exam

(nothing different than a pediatrician would do), listen to my

history/account and review the recent (and comprehensive) blood work

ordered by our pediatrician. I actually wished they had been a bit

more thorough in ruling out other things.

Anyway, they are familiar with (even the nurse that came in

before the doctors said she suspected what the diagnosis would be).

They are anti t & a, as they feel that hasn't really been proven to

eliminate the problem, but they do prescribe prednisone.

My son is going on 11 and does not necessarily present in the usual

manner. He's a bit older than most and his fevers are very manageable

(as they rarely top 101-102). So far, giving prednisone at the first

signs seems to be working and has not increased frequency (although

we've only given it twice now).

Anyway, good luck with your search.

a

[Guest guest]

Can he get off the meds? Talk to a homeopath? I'm sure the drugs are killing

him. my aunt died of a some RX mix-up or some such

Nita (crew chief) and the crew: 16, Jon 14, 12, 10,

7, Christian (7/16/03 to 8/22/04), 3 and Isaac, 1

http://momof6.dotphoto.com <http://momof6.dotphoto.com/> for not

necessarily current pictures

http://nitasspot.blogspot.com

Learn from the mistakes of others. Trust me... you can't live long enough

to make them all yourself.

[Guest guest]

I think that they've both been brainwashed to believe that they will die without

them. My parents are both in their early eighties and of the generation

which has been trained to think that doctors are gods and pharmaceuticals are

healing potions. I feel SO powerless to help them!

 

)O( 

From: Venita Garner <nitagarner@...>

Subject: RE: need to vent

Vaccinations

Received: Sunday, March 1, 2009, 4:32 PM

Can he get off the meds? Talk to a homeopath? I'm sure the drugs are killing

him. my aunt died of a some RX mix-up or some such

Nita (crew chief) and the crew: 16, Jon 14, 12, 10,

7, Christian (7/16/03 to 8/22/04), 3 and Isaac, 1

http://momof6.dotphoto.com <http://momof6.dotphoto.com/> for not

necessarily current pictures

http://nitasspot.blogspot.com

Learn from the mistakes of others. Trust me... you can't live long enough

to make them all yourself.

[Guest guest]

Hi, . I also have the elderly parent dilemma. It's very frustrating. I

find the best thing is to go along to their doctor appointments, if they'll let

you. Ask them to humor you. I find that if I demand to be involved, they get all

teenagery on me.

Bring a list of meds, doses, etc. and tell the doctor you're concerned about the

number of meds, and what ones he/she thinks could be reduced or eliminated. Chip

away at as many as you can, and keep more from being added, especially

antibiotics. The flu shot is a tough one to get them away from.

If your dad has dementia, he is likely on those awful dementia drugs that

actually produce dementia-type symptoms, or maybe anti-depressants. Suggest

going off of them to see what happens, since they aren't cures or a lifesavers

as other meds are promoted to be--nothing to lose.

At the same time, if something comes up (cold, urinary tract infection, etc.)

ask them to try something natural. Sometimes they'll go for it just because it's

doing something. They like to take pills, I find. Sigh. Good luck!

Winnie

..

need to vent

Vaccinations

> Hi All;

>

> This isn't a vaccination issue - other than the fact that my

> elderly

> parents both get the flu shot every winter. Seems odd that

> nobody gets

> the flu in the summertime, but once these shots are administered

> in the

> wintertime, there's suddenly the flu bug everywhere. My beef (if

> you

> will) is that my parents are on a combined total of TWENTY-FOUR

> prescription drugs for two separate conditions!

>

> My mother has hypertension and my father has senile dementia.

> Last week

> they visited and my father had to lay down for a couple of

> hours, as he

> became very weak. I sense that he is so overmedicated that it is

> literally killing him faster. Prior to being medicated, he had a

> lot of

> energy and enjoyed taking care of his organic vegetable garden

> every

> year. I understand that this situation is called polypharmacy.

>

> Any comments would be appreciated and sorry for the rant!

>

> aka Olwen )O(

>

>

[Guest guest]

Sound advice. I would also recommend geting a copy of the Physicians desk

reference

and taking it with you, it would take the BS from the doc and give you solid

ground to stand on.

Jim

________________________________

From: " wharrison@... " <wharrison@...>

Vaccinations

Sent: Sunday, March 1, 2009 9:05:13 PM

Subject: Re: need to vent

Hi, . I also have the elderly parent dilemma. It's very frustrating. I

find the best thing is to go along to their doctor appointments, if they'll let

you. Ask them to humor you. I find that if I demand to be involved, they get all

teenagery on me.

Bring a list of meds, doses, etc. and tell the doctor you're concerned about the

number of meds, and what ones he/she thinks could be reduced or eliminated. Chip

away at as many as you can, and keep more from being added, especially

antibiotics. The flu shot is a tough one to get them away from.

If your dad has dementia, he is likely on those awful dementia drugs that

actually produce dementia-type symptoms, or maybe anti-depressants. Suggest

going off of them to see what happens, since they aren't cures or a lifesavers

as other meds are promoted to be--nothing to lose.

At the same time, if something comes up (cold, urinary tract infection, etc.)

ask them to try something natural. Sometimes they'll go for it just because it's

doing something. They like to take pills, I find. Sigh. Good luck!

Winnie

..

need to vent

Vaccinations

> Hi All;

>

> This isn't a vaccination issue - other than the fact that my

> elderly

> parents both get the flu shot every winter. Seems odd that

> nobody gets

> the flu in the summertime, but once these shots are administered

> in the

> wintertime, there's suddenly the flu bug everywhere. My beef (if

> you

> will) is that my parents are on a combined total of TWENTY-FOUR

> prescription drugs for two separate conditions!

>

> My mother has hypertension and my father has senile dementia.

> Last week

> they visited and my father had to lay down for a couple of

> hours, as he

> became very weak. I sense that he is so overmedicated that it is

> literally killing him faster. Prior to being medicated, he had a

> lot of

> energy and enjoyed taking care of his organic vegetable garden

> every

> year. I understand that this situation is called polypharmacy.

>

> Any comments would be appreciated and sorry for the rant!

>

> aka Olwen )O(

>

>

[Guest guest]

This is why it's important to go their appointments with them and get the doctor

to agree. Then it's off of you and you can say, " well, the doctor said... "

It's sort of like if another adult tells your child the same thing you've told

them a thousand times, all of a sudden they listen.

Of course, they have to agree to let you accompany them.

Winnie

RE: need to vent

> Vaccinations

> Received: Sunday, March 1, 2009, 4:32 PM

>

> Can he get off the meds? Talk to a homeopath? I'm sure the drugs

> are killing

> him. my aunt died of a some RX mix-up or some such

>

>

>

> Nita (crew chief) and the crew: 16, Jon 14, 12,

> 10,

> 7, Christian (7/16/03 to 8/22/04), 3 and Isaac, 1

> http://momof6.dotphoto.com for not

> necessarily current pictures

>

> http://nitasspot.blogspot.com

> Learn from the mistakes of others. Trust me... you can't live

> long enough

> to make them all yourself.

>

>

>

>

>

[Guest guest]

Thanks everyone for your support! I will see my parents later this week and ask

them if I may accompany them to their next appointments.

 

As a result of this dilemma, I have started a Facebook group called,

" Polypharmacy and Overmedication. "   I use my pagan name there and it is Olwen

Moondancer, assuming some of you are Facebook members and wish to join.

 

Saluatations,

aka Olwen )O(

 

>

> From: Venita Garner

> Subject: RE: need to vent

> Vaccinations

> Received: Sunday, March 1, 2009, 4:32 PM

>

> Can he get off the meds? Talk to a homeopath? I'm sure the drugs

> are killing

> him. my aunt died of a some RX mix-up or some such

>

>

>

> Nita (crew chief) and the crew: 16, Jon 14, 12,

> 10,

> 7, Christian (7/16/03 to 8/22/04), 3 and Isaac, 1

> http://momof6.dotphoto.com for not

> necessarily current pictures

>

> http://nitasspot.blogspot.com

> Learn from the mistakes of others. Trust me... you can't live

> long enough

> to make them all yourself.

>

>

>

>

>

[Guest guest]

Bridget,

My heart goes out to you - it must be doubly hard when you have a young

child to care for. But here's my words of encouragement: Last year at this

time I was almost wheel chair bound. I had no diagnosis - was undergoing

tons of neuro tests to determine what was wrong and would STILL be

undergoing those tests if I hadn't had the good fortune of having an LLMD

tell me that it sounded to him like I had lyme. At that point, I had

already had 3 negative lyme tests and told him so and he told me that 50% of

all his lyme patients had NEVER had a positive lyme test result. In March

09, he put me on a 4 month trial of antibiotics and at month 3, I thought

that perhaps, maybe, well.... is it just hopeful thinking???.... maybe maybe

there's the tiniest bit of improvement?????? At month 4, it was clear that I

was improving - though at a very very slow rate. The only way I knew for

sure was that I wasn't on pain meds 24/7 - I was able to slightly reduce my

need for pain pills. Last month, I had improved to the point where I quit

my meds. Unfortunately, it was too soon and I just went back on as I

started having very mild symptoms again. However, I have improved to the

point where I can now walk with no problem - I have none of the associated

pains that were so debilitating and my energy level - while not all the way

back, is ALMOST all the way back. I'll be back on the meds for another 3-4

months and then try again and see if I'm through. If not, I can live with

taking the meds because, for the most part, I have my life back.

What meds are you on? How long do you think you've had lyme - how long have

you been symptomatic?

Hang in there,

Kathy

On Thu, Dec 31, 2009 at 9:46 AM, bridget <blueyes7648@...> wrote:

>

>

> So I need to vent to some people that understand....I have late stage

> neurological lymes, I am 28 years old and feel like a 70 year old. I have

> lost all that makes me, me. I have no energy, physically or mentally, I

> never want to do anything, I used to be nonstop, fun, happy, energetic. I

> used to live every day like it was my last, getting every last second out of

> it and enjoyed it, now I just survive thru the day so I can go to bed where

> I can sleep and not be a burden to anyone. My daughter needs her mom, before

> she is a teenager, she is 4 and already I have missed out on a year of her

> life, we haven't been able to do the fun stuff I looked forward to, we stay

> home, I don't want to be a hermit and I don't want her wanting to be one

> when she gets big. I wake up each day feeling like shit and don't even want

> to get out of bed because I know what lays ahead. people dont even invite me

> to do things anymore, I don't know if it's because I am such a miserable

> companion, or because I refuse to make a committment, not knowing how I will

> feel one day to the next. I just need to hear that it will get better, I

> can't live like this anymore, I don't want to be this person. I want to be

> able to go camping, hiking, fishing, ride my horse again. I can't feel my

> fingers or toes anymore, I have pain constantly, I am crabby and sad, what

> the hell is with this disease???? I honestly would rather lose an arm or

> leg, or have cancer. at least then I would know what to expect and deal with

> it and live with it, I have no idea if I am going to get better from this,

> or if the damn antibiotics are going to start working, after 3 months on

> them...

> Uuuugggghhhh

> sorry, I just needed to vent, I couldn't sleep last night, couldn't wake up

> until 10:30 am, my daughter bouncing on the bed to get up, and found out my

> friends went somewhere with all of their kids without even bothering to ask

> me if I wanted to go. I just feel like a horrible mom.

> Again, sorry, just needed to get that out

> Bridget

>

>

>

[Guest guest]

Bridget: Believe me, I know how you feel and it is hard to put into words.

After 15 months on salt

and C I am a different person. Have you considered that maybe some of your

problems are caused by

something that anibiotics don't work on? Maybe you should look into some of the

alternative's and

at some of the co-infections. I now have NO migrane headaches, NO severe sudden

pains from the back

of my neck, NO sensation of crawling, burning, etc., NO pain in the bottom of my

feet and ankles

that make it difficult to walk when I haven't for a while. I did have rapid

heartbeat the other day

but it was the first time in months and very brief. My tooth pain has subsided,

the pains that

shoot from my joints and bones are very rare (almost completely gone). I have

so much more stamina

and don't panic at the thought of learning something new, ie., a new computer

program. My friends

are amazed and see the difference. There is hope. I've pretty much given it a

shot gun approach,

taking lots of advice, ignoring others, treating symptoms. When I reduce the

salt and C I start

getting the shooting pains first, and get somewhat discouraged, but I can only

recommend to you that

if you aren't seeing results, keep searching for something that gives you some.

There is hope and

the tendency is not to share the good news and good results. Hang in there.

Bonnie

------- Original Message -------

From : bridget[mailto:blueyes7648@...]

Sent : 12/31/2009 9:46:44 AM

To :

Cc :

Subject : RE: [ ] Need to vent

So I need to vent to some people that understand....I have late stage

neurological lymes, I am

28 years old and feel like a 70 year old. I have lost all that makes me, me. I

have no energy,

physically or mentally, I never want to do anything, I used to be nonstop, fun,

happy, energetic. I

used to live every day like it was my last, getting every last second out of it

and enjoyed it, now

I just survive thru the day so I can go to bed where I can sleep and not be a

burden to anyone. My

daughter needs her mom, before she is a teenager, she is 4 and already I have

missed out on a year

of her life, we haven't been able to do the fun stuff I looked forward to, we

stay home, I don't

want to be a hermit and I don't want her wanting to be one when she gets big. I

wake up each day

feeling like shit and don't even want to get out of bed because I know what lays

ahead. people dont

even invite me to do things anymore, I don't know if it's because I am such a

miserable companion,

or because I refuse to make a committment, not knowing how I will feel one day

to the next. I just

need to hear that it will get better, I can't live like this anymore, I don't

want to be this

person. I want to be able to go camping, hiking, fishing, ride my horse again. I

can't feel my

fingers or toes anymore, I have pain constantly, I am crabby and sad, what the

hell is with this

disease???? I honestly would rather lose an arm or leg, or have cancer. at least

then I would know

what to expect and deal with it and live with it, I have no idea if I am going

to get better from

this, or if the damn antibiotics are going to start working, after 3 months on

them...

Uuuugggghhhh

sorry, I just needed to vent, I couldn't sleep last night, couldn't wake up

until 10:30 am, my

daughter bouncing on the bed to get up, and found out my friends went somewhere

with all of their

kids without even bothering to ask me if I wanted to go. I just feel like a

horrible mom.

Again, sorry, just needed to get that out

Bridget

[Guest guest]

Bonnie...how much of the salt and C do you take...my symptoms are so severe and

not getting any better after months of being on amoxicillin...

From: oakridge@... <oakridge@...>

Subject: RE: [ ] Need to vent

Date: Thursday, December 31, 2009, 4:49 PM

Bridget: Believe me, I know how you feel and it is hard to put into

words. After 15 months on salt

and C I am a different person. Have you considered that maybe some of your

problems are caused by

something that anibiotics don't work on? Maybe you should look into some of the

alternative' s and

at some of the co-infections. I now have NO migrane headaches, NO severe sudden

pains from the back

of my neck, NO sensation of crawling, burning, etc., NO pain in the bottom of my

feet and ankles

that make it difficult to walk when I haven't for a while. I did have rapid

heartbeat the other day

but it was the first time in months and very brief. My tooth pain has subsided,

the pains that

shoot from my joints and bones are very rare (almost completely gone). I have

so much more stamina

and don't panic at the thought of learning something new, ie., a new computer

program. My friends

are amazed and see the difference. There is hope. I've pretty much given it a

shot gun approach,

taking lots of advice, ignoring others, treating symptoms. When I reduce the

salt and C I start

getting the shooting pains first, and get somewhat discouraged, but I can only

recommend to you that

if you aren't seeing results, keep searching for something that gives you some.

There is hope and

the tendency is not to share the good news and good results. Hang in there.

Bonnie

[Guest guest]

Bridget,

Hang in there. We do improve-you actually are improving even though you

don't feel it yet. The antibiotics are doing deep work and causing herx

reactions, which cause symptoms to flare. By the time your daughter is 5 you

will be feeling better. This is just temporary. Try to remind yourself that

" this too shall pass. "

Sometimes I get really down about being sick. My LLMD reminded me that most

patients are on antibiotics for at least 2.5 to 3 years to get improvement.

Sometimes, though, I feel good. It changes constantly and all I can do is

ride the waves. But I was able to camp with my husband last summer and I was

unable to do that the summer before. You'll do it all again, too.

Try to focus on what you can do rather than what you can't do. Try not to

beat yourself up about your daughter and what she's missing out on. Can you

ask a friend with a child to take her along for the afternoon of activities?

Also, do everything that is nurturing for you. I like aromatherapy oils,

which I diffuse or just smell or wear on my wrists. I use beautifully

scented (naturally scented, of course) soaps. I light candles sometimes. I

listen to music that is uplifting or fun for me. Each person has something

that helps them get through.

My wish for you for the new year is relief physically and comfort

emotionally.

Janet

[Guest guest]

I hope your new opinion gives you better answers than you have gotten.

Barb

>

> Okay i had my last apt with the neurosurgeon he is letting me have second

oponion and i am glad. I have spondyloethesis grade 2, bone spur and bulging

disc, he said he does not think surgery will help that i will have to live with

it. he wrote on records as i get them all the time and i am mad, he put on it

several times the patient tells me she is in pain however she looks comfortible,

he then tells my primary dr all i need to do is walk. i have been doing that .

he said in record no nerve entrapment well then why do i have pins and needles

all the time,weakness in legs, when ever i start to do something the pins and

needles start up well anyway i am going to see a better one at uMc in tucson he

is so good. have to wait for insurance to approve it.

> Barbara

>

[Guest guest]

Dear Barbara;

Venting is good!. Were I you and I'm not so please take this as a suggestion.

11 years ago I broke of a piece of L5 lifting a patient. To date I've had 3

spinal operations now. The first was to repair the damage of the initical break.

The second was to remove the scar tissue that had built up around the original

site, and the third which I am still recovering on was a full fusion which has

been NO picknick believe me

Upon reading your vent, I would get a second opinion. Pain is " invisible "

unless your venting and crying and pull away when ever they touch you and your

tissues are hot to the touch which they do not need to be, to still be painful.

Between the Spondylothesesis and your bone spurs you will eventually have

impingment which will need a surgery to repair but NOT a fusion if you have a

good neuro. Bulging discs can decompress back into normal position. With proper

care.

From the sounds of it your seeing a pompus idiot who doesn't really care about

your health and state of mind only his. However I'm not there but justing going

by what I see here.

Sincerely

Mist

>

> Okay i had my last apt with the neurosurgeon he is letting me have second

oponion and i am glad. I have spondyloethesis grade 2, bone spur and bulging

disc, he said he does not think surgery will help that i will have to live with

it. he wrote on records as i get them all the time and i am mad, he put on it

several times the patient tells me she is in pain however she looks comfortible,

he then tells my primary dr all i need to do is walk. i have been doing that .

he said in record no nerve entrapment well then why do i have pins and needles

all the time,weakness in legs, when ever i start to do something the pins and

needles start up well anyway i am going to see a better one at uMc in tucson he

is so good. have to wait for insurance to approve it.

> Barbara

>

[Guest guest]

Oh Barbara I am so sorry that you have such a jerk for a doctor. There are

better doctors out there that understand that pain can not be seen and realize

that you can not " look " at someone and understand their pain level. That is

INSANE. I am in pain all the time, and I smile and I try to laugh as much as

possible. Does that mean I am not in pain? NO that just means I am not going to

frown all the time and let everyone else know how much pain I am in. I am so

angry at your doctor. Please, please get another opinion. Nobody deserves to be

treated as he has treated you!!!!!

Barb

> >

> > Okay i had my last apt with the neurosurgeon he is letting me have second

oponion and i am glad. I have spondyloethesis grade 2, bone spur and bulging

disc, he said he does not think surgery will help that i will have to live with

it. he wrote on records as i get them all the time and i am mad, he put on it

several times the patient tells me she is in pain however she looks comfortible,

he then tells my primary dr all i need to do is walk. i have been doing that .

he said in record no nerve entrapment well then why do i have pins and needles

all the time,weakness in legs, when ever i start to do something the pins and

needles start up well anyway i am going to see a better one at uMc in tucson he

is so good. have to wait for insurance to approve it.

> > Barbara

> >

>

[Guest guest]

Hi everyone,

    This is Steph in Virginia. I just wanted to vent. For the newbies on the

list, I've been living with RA for 11 years and have been successfully treated

with Remicade for 10.5 of those 11 years.

     First, I wanted to share some remarkable news. My mom had been on the NYC

area lung transplant list for 4 years. Last night she received two brand

spankin' new lungs! I am so humbled by the person whose last, selfless act was

to be an organ donor.

    Secondly, my need to vent. In June 2009 I stopped methotrexate because my

hubby & I wanted to try and get pregnant. We started trying in September 2009

and, despite several attempts at IUI, we are still not pregnant. It is a very

depressing cycle, particularly because of my RA. Since I stopped MTX I can tell

that the Remicade is not as effective. As a result, I'm constantly exhausted. I

leave the house at 6:30am for work, get back at 6:30pm and just do not have any

energy to workout on the treadmill we bought last year. As a result of not

working out, being depressed & all the hormones I have gained 40 pounds in the

past year -- not good for my RA or for my health overall.

    On Monday night, for the first time in a long time I actually felt okay so I

decided to run on the treadmill. BAD IDEA! About 10 minutes into it, I lost my

footing & fell face first into the running treadmill. Hubby brought me to the ER

(my first ER visit since I first got sick 11 years ago) where the doctors said I

had severe road rash -- on my face, right arm from elbow to wrist & both legs

from knees to ankles. And I broke my glasses in half!

    Now, my reason for venting -- despite the very nice people in the ER, they

completely ignored my knowledge of my body. Even though my tetanus shot is

current, I advised them to give me antibiotics anyway because of my low immune

system. They said it would be fine. They said they would give me something for

the pain (which was awful). I told them I have a high drug tolerance. They gave

me 10 vicodin tablets, which barely touched the pain.

    My rheumy and PCP are 60 miles away so I can't ask them for a refill on my

pain meds. My two options are to take lots of Tylenol or ask my fertility doc

(whose office is across the street from my house.) Decisions, decisions.

Thanks for letting me vent!

Take care,

Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~  " Never underestimate the

power of a small, dedicated group of people to change the world -- indeed, it's

the only thing that ever has. " (Margaret Mead)AmeriCorps Alums -- Still Getting

Things Done

Advice for people living with RA -- www.newwayra.com -- click on Real People,

Real Stories and from Virginia to see my videos

[Guest guest]

,

I wish I could reach out and give you a great bug hug right now! I wish I knew

what to say to make you feel better!

First off, let me say CONGRATS TO YOUR MOM! How lucky your mom is to have

received such a gift. I have a family member who was recently taken off the

liver transplant list and it was (and still is) devastating to deal with..... I

wish her a speedy recovery!

Go back or call the ER and tell them you are still in pain and need more meds.

Why can’t your rheumy or PCP call something in? I guess they would probably

want to see you however you could have the ER fax over the reports.

Is there any other DMARD you can take while TTC that will help the Remicade last

longer?

((((HUG)))))

*~ Kami ~*

From: DeNicola-

Sent: Wednesday, October 27, 2010 8:31 AM

Subject: [ ] Need to vent

Hi everyone,

This is Steph in Virginia. I just wanted to vent. For the newbies on the

list, I've been living with RA for 11 years and have been successfully treated

with Remicade for 10.5 of those 11 years.

First, I wanted to share some remarkable news. My mom had been on the NYC

area lung transplant list for 4 years. Last night she received two brand

spankin' new lungs! I am so humbled by the person whose last, selfless act was

to be an organ donor.

Secondly, my need to vent. In June 2009 I stopped methotrexate because my

hubby & I wanted to try and get pregnant. We started trying in September 2009

and, despite several attempts at IUI, we are still not pregnant. It is a very

depressing cycle, particularly because of my RA. Since I stopped MTX I can tell

that the Remicade is not as effective. As a result, I'm constantly exhausted. I

leave the house at 6:30am for work, get back at 6:30pm and just do not have any

energy to workout on the treadmill we bought last year. As a result of not

working out, being depressed & all the hormones I have gained 40 pounds in the

past year -- not good for my RA or for my health overall.

On Monday night, for the first time in a long time I actually felt okay so I

decided to run on the treadmill. BAD IDEA! About 10 minutes into it, I lost my

footing & fell face first into the running treadmill. Hubby brought me to the ER

(my first ER visit since I first got sick 11 years ago) where the doctors said I

had severe road rash -- on my face, right arm from elbow to wrist & both legs

from knees to ankles. And I broke my glasses in half!

Now, my reason for venting -- despite the very nice people in the ER, they

completely ignored my knowledge of my body. Even though my tetanus shot is

current, I advised them to give me antibiotics anyway because of my low immune

system. They said it would be fine. They said they would give me something for

the pain (which was awful). I told them I have a high drug tolerance. They gave

me 10 vicodin tablets, which barely touched the pain.

My rheumy and PCP are 60 miles away so I can't ask them for a refill on my

pain meds. My two options are to take lots of Tylenol or ask my fertility doc

(whose office is across the street from my house.) Decisions, decisions.

Thanks for letting me vent!

Take care,

Steph in VA

[Guest guest]

, congratulations to your mom! What a wonderful gift she

received.

I'm sorry you had such a bad accident on the treadmill. Hopefully, you

will soon be healed up and the pain will lessen.

Sue

On Oct 27, 2010, at 8:31 AM, DeNicola- wrote:

> Hi everyone,

> This is Steph in Virginia. I just wanted to vent. For the

> newbies on the list, I've been living with RA for 11 years and have

> been successfully treated with Remicade for 10.5 of those 11 years.

> First, I wanted to share some remarkable news. My mom had been

> on the NYC area lung transplant list for 4 years. Last night she

> received two brand spankin' new lungs! I am so humbled by the person

> whose last, selfless act was to be an organ donor.

[Guest guest]

Steph-- The phone reaches 60 miles with no sweat! Call your Rheumy. They call in

a script.

 

Chris