Re: Hi my name is Jessi thought I would introduce myself

[Guest guest]

Hi Jessi,

Welcome to the group. I'm glad you found us and finally posted. It does help us

to know we aren't alone and to have support from others of us who are in

constant pain also. I can't imagine taking a pain holiday. You're right, doesn't

sound like fun at all. I get a few day holiday next week as I'm about to run out

of pain meds. I've been in more severe pain this month so I used more. So this

is the price I have to pay.

My doc has just got to change my meds this month. These don't work very well

anymore. I've been on these for nearly 3 yrs and I guess my body just doesn't

respond to them anymore as well.

Does the pain pump not work well for you anymore? How long have you had it and

what med is in it if you don't mind me asking? You must have gone a few years

with your back broken? Did it happen while you were a gymnast? That is just

unreal. I've heard of that happening before though. One of my sisters was a

nurse and she had a broken neck from lifting a patient and didn't know it for a

while. It was only a few months though, not years. That's just amazing.

I'm glad your family is supportive, and they should leave you alone about your

meds. If they understand you are in pain then they should be able to understand

the pain meds. What, are you just supposed to suffer according to them? That is

horrible. I'm sorry you go through that. My family isn't supportive on any

level, they don't even come around, so I don't have to worry about being

condemned about my pain meds. I only talk to one sister really. It's a shame,

they are missing out and so am I, but that's life I guess.

You have to do what you need to do for you, they will just have to get over it.

And maybe if you could just see that they really lack understanding, and forgive

them, maybe it will be easier on you. I got to where I just didn't talk about my

pain to my family.And when I wasn't up to doing things with them, I just told

them I didn't feel good so I took pain out of the equation. So the condemnation

stopped for the most part. Now, when and if I'm around them, they might notice

that I'm hurting by my face. I'm so transparent. And they'll comment about me

hurting. I just confirm it and go on. I won't engage in conversation with them

about it.

I hope you will have a decent day today. Take it easy for your sake.

Hugs

~Tommie~

www.myspace.com/tommiejj

PH, CFS, FMS, Diabetes, Sleep Apnea, Restless Leg Syndrome

Don't waste energy second-guessing what you're missing or

what can go awry. If you put enough energy into doubt,

something will undoubtedly go wrong.

Instead, focus on the positive possibilities with a hopeful attitude.

Hi my name is Jessi thought I would introduce myself

I joined this group hoping to get some emotional support (not the

spanx kind, I need that too) I have a great family but I know they

look down on me for having to take pain meds. My Dad is the only one

who understands and that is because he also broke his back. We are

best friends!

I was a competitive gymnast my whole life. In my late teens I quit

competing, just coached. I got married and had 2 great kids. After I

had my kids I noticed that I was in a crap load of pain. After many

tests they noticed my back was fractured. So, I had 2 failed back

surgeries and a couple other surgeries. I was still in a lot of pain

so they sent me to a pain doc and I was taking enough pain meds to

kill a horse. I now have a intrathecal pump. Along with all of the

back stuff I also suffer from migraine headaches about 15 days a

month. I was doing well until my insurance quit paying for some

things so now my quality of life has taken a nose dive. When you

feel almost " normal " for awhile and then you go back to hell, things

are not okay. At my last visit the PA said " Have you ever thought

about taking a drug holiday? " I said " Aren't holidays supposed to be

fun? " She laughs and says " Yes " I said " Well, that does not sound

fun to me and my emotional bank is overdrawn so,I will book that

holiday another time. "

I am trying to be positive. I always say if I quit laughing and

joking around then you know I am not going to be around much longer.

Sorry for the long intro. It feels good to say/write all of this.

Thanks again,

Jessi-IN

[Guest guest]

> The doctors think I fractured my back when I was a gymnast and my

two pregnancies just pushed me over the edge. They were not sure

what it was at first. I was in the hospital for over a week because

I was in so much pain. They thought I was having " female " problems

so I had 2 unnecessary surgeries to rule that out. Then they thought

I had cancer. Where is Dr House when you need him?

My pump does work but I just received a letter from my doc saying

that they would no longer put non FDA approved meds in pumps. Which

translates to " We don't make money off of you " So I had the choice

of leaving (been there 6yrs) or finding another doc that deals with

pumps, which is hard to do, I live in Indiana. I had Fentanyl in it

now I am back to Morphine praying that I don't swell up like I did

last time. It isn't fair that your insurance company can dictate

your quality of life.

I have noticed if I talk about anything to do with my health issues

my famly starts to stare off into space. It really hurts my

feelings. I am a very sensitive person. You would think that after

all I have been through they would know that I am not faking this. I

am going to try what you did with your family and see how they

react.

I hope that your pain level has gone down. Don't you hate those self

imposed drug holidays, what else can you do when you have more pain

than normal.

Thank you for the good idea regarding the family. I will let you

know how it goes.

Jessi

> Does the pain pump not work well for you anymore? How long have

you had it and what med is in it if you don't mind me asking? You

must have gone a few years with your back broken? Did it happen

while you were a gymnast? That is just unreal. I've heard of that

happening before though. One of my sisters was a nurse and she had a

broken neck from lifting a patient and didn't know it for a while.

It was only a few months though, not years. That's just amazing.

>

I got to where I just didn't talk about my pain to my family.And

when I wasn't up to doing things with them, I just told them I

didn't feel good so I took pain out of the equation. So the

condemnation stopped for the most part. Now, when and if I'm around

them, they might notice that I'm hurting by my face. I'm so

transparent. And they'll comment about me hurting. I just confirm it

and go on. I won't engage in conversation with them about it.

>

>

[Guest guest]

Jessi,

You are most welcome. Yes, I do hate how the pencil pushers know more about our

healthcare than our docs are supposed to. It really ticks me off too. Being on

Medicare, I of course have a Part D Insurance Company. I have taken this certain

potassium that is prescription for about 10 yrs. They covered it last year, but

then this year decided they weren't going to cover it. It makes absolutely no

sense as the pill form in the dosage most of us on Lasix takes are HUGE. I break

them in half and still have problems with them getting stuck in my throat. They

do cover some liquid potassium that is the most awful tasting stuff and some

powder packets that's equally as horrible. So I've gone back to the horse pills.

And I'm speaking for many elderly people who used these effervescent tablets

that I used. Dissolve in water and drink and it wasn't that bad tasting either.

And they are semi cheap, so why they discontinued covering them is beyond me.

So I fully understand how you feel. I had the swelling problem with the Morphine

pills, the ER type. When he got me up to a good therapeutic dosage, my ankles,

legs and feet would stay swollen. It got so bad that my feet, ankles and legs

turned different colors. I finally weaned myself down to 100mg's 3x's a day and

sure enough the swelling went away. The docs wouldn't listen to me. I kept

telling them about it and showing them and telling them I thought the Morphine

was doing it. Sure enough, that's what it was. My right foot is permanently

discolored from it. By the time I went down off the medicine, my right foot was

pink, red, orange, yellow, blue and brown and starting to turn black in places.

Now it's stained brown. He really needs to change meds for me this time. I'm so

tired of hurting.

Ok, I'm going to stop my ranting about this. lol It's going to be ok. I keep

telling myself that and it does help.

I hope you are having a low pain day today.

~Tommie~

www.myspace.com/tommiejj

PH, CFS, FMS, Diabetes, Sleep Apnea, Restless Leg Syndrome

Don't waste energy second-guessing what you're missing or

what can go awry. If you put enough energy into doubt,

something will undoubtedly go wrong.

Instead, focus on the positive possibilities with a hopeful attitude.

Re: Hi my name is Jessi thought I would introduce

myself

> The doctors think I fractured my back when I was a gymnast and my

two pregnancies just pushed me over the edge. They were not sure

what it was at first. I was in the hospital for over a week because

I was in so much pain. They thought I was having " female " problems

so I had 2 unnecessary surgeries to rule that out. Then they thought

I had cancer. Where is Dr House when you need him?

My pump does work but I just received a letter from my doc saying

that they would no longer put non FDA approved meds in pumps. Which

translates to " We don't make money off of you " So I had the choice

of leaving (been there 6yrs) or finding another doc that deals with

pumps, which is hard to do, I live in Indiana. I had Fentanyl in it

now I am back to Morphine praying that I don't swell up like I did

last time. It isn't fair that your insurance company can dictate

your quality of life.

I have noticed if I talk about anything to do with my health issues

my famly starts to stare off into space. It really hurts my

feelings. I am a very sensitive person. You would think that after

all I have been through they would know that I am not faking this. I

am going to try what you did with your family and see how they

react.

I hope that your pain level has gone down. Don't you hate those self

imposed drug holidays, what else can you do when you have more pain

than normal.

Thank you for the good idea regarding the family. I will let you

know how it goes.

Jessi

> Does the pain pump not work well for you anymore? How long have

you had it and what med is in it if you don't mind me asking? You

must have gone a few years with your back broken? Did it happen

while you were a gymnast? That is just unreal. I've heard of that

happening before though. One of my sisters was a nurse and she had a

broken neck from lifting a patient and didn't know it for a while.

It was only a few months though, not years. That's just amazing.

>

I got to where I just didn't talk about my pain to my family.And

when I wasn't up to doing things with them, I just told them I

didn't feel good so I took pain out of the equation. So the

condemnation stopped for the most part. Now, when and if I'm around

them, they might notice that I'm hurting by my face. I'm so

transparent. And they'll comment about me hurting. I just confirm it

and go on. I won't engage in conversation with them about it.

>

>

[Guest guest]

Hi and welcome,

Sorry this is gonna be short...this is one of the BAD days...its weird because

yesterday I felt great, even did some light house work. But not today...have

been on muscle relaxers, pain killers and the usual epilepsy/ bp/allergy/hormone

and what ever else you can think of I take. Any how welcome again, I am on my

way to try to sleep and I will write you a nicer note hopefully tomorrow?? Who

knows.

Welcome again and please come and vent with us!!

Lynn  

 

Lynn Latham

blue_texasgal@...

lynnlatham@...

" I Don't Do Mornings "

 

Hi my name is Jessi thought I would introduce myself

I joined this group hoping to get some emotional support (not the

spanx kind, I need that too) I have a great family but I know they

look down on me for having to take pain meds. My Dad is the only one

who understands and that is because he also broke his back. We are

best friends!

I was a competitive gymnast my whole life. In my late teens I quit

competing, just coached. I got married and had 2 great kids. After I

had my kids I noticed that I was in a crap load of pain. After many

tests they noticed my back was fractured. So, I had 2 failed back

surgeries and a couple other surgeries. I was still in a lot of pain

so they sent me to a pain doc and I was taking enough pain meds to

kill a horse. I now have a intrathecal pump. Along with all of the

back stuff I also suffer from migraine headaches about 15 days a

month. I was doing well until my insurance quit paying for some

things so now my quality of life has taken a nose dive. When you

feel almost " normal " for awhile and then you go back to hell, things

are not okay. At my last visit the PA said " Have you ever thought

about taking a drug holiday? " I said " Aren't holidays supposed to be

fun? " She laughs and says " Yes " I said " Well, that does not sound

fun to me and my emotional bank is overdrawn so,I will book that

holiday another time. "

I am trying to be positive. I always say if I quit laughing and

joking around then you know I am not going to be around much longer.

Sorry for the long intro. It feels good to say/write all of this.

Thanks again,

Jessi-IN

[Guest guest]

Tommie and Jessi,

Tommie, it's so funny you said that about your face giving away your pain. When

I went in to see my therapist on Thursday, when she came out to get me, she

said, oh, you're not having a good day are you? It's so funny that my therapist

can see it and my family can't! My husband usually can read my face and know

something's wrong, but I get a kick out of the fact that he still doesn't

realize WHAT'S wrong. LOL Or maybe he does and we just don't talk about it?

Family is tough. They expect us to keep doing the things we were able to do

when we started out, and it's so hard for everyone to accept that we are

disabled and simply can't. I'd like to see statistics on the divorce rate for

people who become disabled. I'd bet it's pretty high because " in sickness and

in health " seems to be mostly so many words. I just happened to get lucky and

my husband takes it seriously. I'd bet that most people don't.

Chelle

[Guest guest]

Jessi,

As far as I can see (and House is my favorite show), he puts his patients

through sheer hell to get to his diagnoses. While he usually ends up with the

right one, it takes a lot of tests and surgeries and pain before he gets there.

I'd have to think twice before having him as my doctor! But then again, I guess

the medical field just can't figure things out right away, which is why most of

us suffer, right?

I'd love to know what exactly I have. I've been diagnosed with osteo-arthritis,

fibromyagia, osteopenia, and irritable bowel syndrome. But now they're doing

tests for lupus, thyroid issues, and mono. The doctor thinks that I'm so

exhausted all the time because of the fibro but they want to rule the other

things out. And it just goes on and on and on..... LOL

Chelle

[Guest guest]

Chelle,

My husband told me that the vows were just a ritual that every one said at their

wedding. This was very shocking to me as we'd been together for 20 yrs and I

thought I knew him better than that. So that was a major slap in the face. Then

I have my youngest son, . He can be so mean to me. I want to kick him out

and if I had the strength, I'd beat the crap out of him on most days. He doesn't

like helping me out when I'm down and can't function well, like this morning. He

was so mean and ugly just because I asked for his help. He did the things I

asked, but with great haste. I just wanted to hit him. And if I had of been

strong enough, I would have.

~Tommie~

www.myspace.com/tommiejj

PH, CFS, FMS, Diabetes, Sleep Apnea, Restless Leg Syndrome

Don't waste energy second-guessing what you're missing or

what can go awry. If you put enough energy into doubt,

something will undoubtedly go wrong.

Instead, focus on the positive possibilities with a hopeful attitude.

Re: Hi my name is Jessi thought I would introduce

myself

Tommie and Jessi,

Tommie, it's so funny you said that about your face giving away your pain.

When I went in to see my therapist on Thursday, when she came out to get me, she

said, oh, you're not having a good day are you? It's so funny that my therapist

can see it and my family can't! My husband usually can read my face and know

something's wrong, but I get a kick out of the fact that he still doesn't

realize WHAT'S wrong. LOL Or maybe he does and we just don't talk about it?

Family is tough. They expect us to keep doing the things we were able to do

when we started out, and it's so hard for everyone to accept that we are

disabled and simply can't. I'd like to see statistics on the divorce rate for

people who become disabled. I'd bet it's pretty high because " in sickness and in

health " seems to be mostly so many words. I just happened to get lucky and my

husband takes it seriously. I'd bet that most people don't.

Chelle

[Guest guest]

Tommie,

I would guess that most people think that those words we say at our wedding are

just a ritual. I am so lucky that my husband takes them seriously, but he could

just as easily have not. I'm sure there are many people like you whose spouses

bail when their loved one gets sick.

I think all of our family members start to hate doing things for us after

awhile. I try to think how I would feel if I was the caregiver, and I don't

know if I could be as patient as my husband is. He's definitely one in a

million.

Anyone read or heard of any statistics? That would be an interesting study.

Chelle

[Guest guest]

Chelle,

You're right, he just couldn't handle the fact that I was sick. He didn't know

how to deal with it and didn't want to. The reason he is dead right now is

because he was dx'd with Bipolar and Hep C. He got Hep C from his brother who

died from it just 5 months before he committed suicide. He wasn't going to live

like that. So he took his life. He couldn't stand illness. But it still hurt

that he treated me the way he did just because I was sick.

~Tommie~

www.myspace.com/tommiejj

PH, CFS, FMS, Diabetes, Sleep Apnea, Restless Leg Syndrome

Don't waste energy second-guessing what you're missing or

what can go awry. If you put enough energy into doubt,

something will undoubtedly go wrong.

Instead, focus on the positive possibilities with a hopeful attitude.

Re: Hi my name is Jessi thought I would introduce

myself

Tommie,

I would guess that most people think that those words we say at our wedding

are just a ritual. I am so lucky that my husband takes them seriously, but he

could just as easily have not. I'm sure there are many people like you whose

spouses bail when their loved one gets sick.

I think all of our family members start to hate doing things for us after

awhile. I try to think how I would feel if I was the caregiver, and I don't know

if I could be as patient as my husband is. He's definitely one in a million.

Anyone read or heard of any statistics? That would be an interesting study.

Chelle

[Guest guest]

For pity sakes Cory and I have been together for 20yrs this October

and he STILL can't read me right most of the time. I know that my

disability takes it's toll opn everyone in our family not just me. I

try to always remember that. When I am down with a migraine for days I

start to feel so guilty because I am not the person I once was.

The " perfect " person who could take care of everything. Heck I am

doing good now if I manage to take a shower twice a week. I know some

of you are saying eeww but then you are also saying " I know just what

she means " hee hee I think our families know something is wrong, they

just want to ignore it. Maybe if they ignore it long enough...it will

go away, even if it is just for that night. Hope you are all having a

good day. It is beautiful here in Indiana!

Jessi

My husband usually can read my face and know something's wrong, but I

get a kick out of the fact that he still doesn't realize WHAT'S wrong.

[Guest guest]

Tommie,

I think the " successful " suicide rate for bipolar patients is 20%. That is

outrageously high, and I also think it indicates a failure in our health care

system to properly care for people with mental illness.

Of course, when the patient won't take their medications, that's another

problem. It's too bad they can't rush the research and figure out a way to fix

all these problems, isn't it?

Again, I'm truly sorry that your ex is gone. It must have been very hard on you

and your boys the last four years without him.

Chelle

[Guest guest]

Chelle,

Yes, it has been very hard. Today seems to be a day to talk about him as he has

come up in many conversations I've had today. I'm worn out from the emotions of

it all. I can't believe it will be 5 yrs in Feb. since he's been gone. Time

flies too darn fast.

I'll be so glad when gets home. It's now going to be Monday. I told him it

better not be one more day later as I will kick his rear end when he gets home

if it is. I miss him so very much. I can't wait to see him. He graduated from

school today. Thank God Stacey was able to be there and took lots of pictures

for me. I'm still waiting for them in email, she's pretty busy today at work, so

she'll get it done today some time. I wish he could and wanted to get out of the

Army, I don't want to be without him. But this is his choice for life. I have to

support him.

I hope you are having a decent day Chelle. Are you feeling ok?

~Tommie~

www.myspace.com/tommiejj

PH, CFS, FMS, Diabetes, Sleep Apnea, Restless Leg Syndrome

Don't waste energy second-guessing what you're missing or

what can go awry. If you put enough energy into doubt,

something will undoubtedly go wrong.

Instead, focus on the positive possibilities with a hopeful attitude.

Re: Hi my name is Jessi thought I would introduce

myself

Tommie,

I think the " successful " suicide rate for bipolar patients is 20%. That is

outrageously high, and I also think it indicates a failure in our health care

system to properly care for people with mental illness.

Of course, when the patient won't take their medications, that's another

problem. It's too bad they can't rush the research and figure out a way to fix

all these problems, isn't it?

Again, I'm truly sorry that your ex is gone. It must have been very hard on

you and your boys the last four years without him.

Chelle

[Guest guest]

Tommie,

Today seems to be a feel like crap day. It started out okay, but just went

downhill from there. Maybe tomorrow will be better.

Chelle