Re: miserable and do not know what to do

[Guest guest]

Amber,

First let me say gentle hugs. Girl, I know what you are going through. There

are days my body is demanding that I remain in bed and rest but life

prevents that from happening. I review and edit books, I do in home spa

parties for The Body Shop At Home and I am the Publicist for Dean Van

Scoyoc, a gothic/horror author. I can do most of my work from home but there

are days that I have to go out and do the in home parties...it takes alot

from me and quite frankly, I am thinking of dropping from in home party job

because the toll it takes is becoming too much. I love it, I have a blast

and I love the money but the next day, even the night of, I pay for it

dearly physically. I have one this coming Thursday night and I don't know

how I am going to pull it off as my sleeping has been very little, my pain

level very high....just not sure how I am going to do it but I will, with a

smile on my face, a bounce in my step and a friendly smile. Then when I get

home, I will cry to myself as I take my pain meds, rub on the tiger balm,

plaster on the Salon Pas and spend half the night looking for a comfortable

position to sit/lay in. I have a car payment to make and that is my

incentive to get out of bed and go about my day. I know it's hard sweetie, I

do. All I can say is hang in there. It saddens me that we all suffer

needlessly so and compassion is a hard thing to find. You have it here

honey. Vent/rant away. I am sure we are all here to listen and offer a

helping hand when we can......I know I am

Peace and fabulous smellies!

Katrina

[Guest guest]

sounds like you are having a flare or getting ready to. you need to call your

rheumy and tell him/her what is going on. I have had flares like this, the best

I can tell you is to rest when you can. You can also get help from your support

family or anyone who can help you with support at home. The more support you

have the better, the more rest you will be able to get. I have my kids help me

out and they are only 2 and 4. My daughter who is 4 will get things for me.

When I do laundry I take my son with me and he helps me put the clothes in the

washer and after they are done he helps me put them in the dryer. My daughter

can now brush her own hair to a point and she even helps her brother get dressed

now. Its the little things that my daughter does that helps greatly.

[ ] miserable and do not know what to do

I am soo miserable today, i just do not know what to do. Since i have

been working i have felt 2 times as bad but i have to work or we loose

our house and cannot eat, we are VERY broke right now and all the

medical cost (having a baby and this ) is not helping either. I swear

they just hurt like crazy today. I do not know what to do to get

through these awful days. how do u all manage these kind of days?? i

have dropped everything i touched, my feet are tingling, throbbing with

stabbing pains, it feels like i am walking ON something. I just do not

know how to pull through days like today. I am taking the prednisone

but it has not done anything much yet..... day 3, taking my lyrica

(have not increased the dose yet to 300), even took a hydrocodone

today, i hate taking them but i do not know what else to do......

anyway i guess i am venting.....i got to work the next 3 days in a row,

pray for me i know i will be insane.

amber

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10:48 AM

[Guest guest]

thanks to all, this morning I am feeling a bit better. I took an extra

lyrica and I am going to start to up the dose like the one doctor suggested. I

was

just hoping the prednisone worked faster than this. I know work tonight is

going to kill my feet again, I am a nurse in a nursing home so I am up and down

halls all night and on my feet a lot (on concrete floors). I guess I have to

keep holding on until the prednisone kicks in some. I go back to my doctor

this Friday and to the rheum next Friday. I just sat last night and cried

wondering what I did to deserve this misery. I have so much to do, so much I

need

to get done, kids require a lot and I am just not up to it at all.

I hope today keeps a better day, thanks for all the support

amber

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[Guest guest]

Hi Katrina:

Thanks for your nice e-mail. I live in North Port, and my Rheumy is Dr. Tatiana

Huguenin, in the Sarasota Arthritis practice. I see her in Englewood

office, and they also have offices in Bradenton, Venice, Sarasota. She is so

wonderful. I see her every 1-2 months, depending on how I am doing.

How are you doing today? I hope you are feeling better. My feet are better

today. I was ready to chop them off they were that bad. Went to the derm.

yesterday, and had 2 sites biopsied, one on my forehead, and one on my right

foot. I will have sugery on my face in 3 weeks. Between the R.A. and

prednisone, my skin cancer has really escalated. I was up most of the night

with pain, especially on my foot. Today is better, but I am off my feet today.

I have been thinking about you, and how you are hurting so much. What do you

take for pain? Have you called your Dr. to tell them how you are feeling, etc.?

Maybe they can call you in something to ease your pain. I know how hard it is

for you to sike yourself up, so you can get dressed, go out, and do a house

party. It takes a lot out of you, that's for sure. You have a good motivation,

your car payment!!! I can imagine how you feel when you get home, hurting,

suffering, and trying not to cry, etc. Then, awake half the night, trying to

get comfortable. Sometimes sleep does not come, and the pain just takes over.

I feel badly for you, and have been there many times. It is hard to even watch

t.v. or read. The morning arrives, and you are beat, so tired you can't get out

of your own way. One thing is good that you can do a lot of your work at home.

You know how it is, when you hurt so much that the thought of getting dressed,

and into that

car, is just too much to do.

I hope today things will be better for you, and your pain has lessened. I

care..........

Barbara

Re: [ ] miserable and do not know what to do

Amber,

First let me say gentle hugs. Girl, I know what you are going through. There

are days my body is demanding that I remain in bed and rest but life

prevents that from happening. I review and edit books, I do in home spa

parties for The Body Shop At Home and I am the Publicist for Dean Van

Scoyoc, a gothic/horror author. I can do most of my work from home but there

are days that I have to go out and do the in home parties...it takes alot

from me and quite frankly, I am thinking of dropping from in home party job

because the toll it takes is becoming too much. I love it, I have a blast

and I love the money but the next day, even the night of, I pay for it

dearly physically. I have one this coming Thursday night and I don't know

how I am going to pull it off as my sleeping has been very little, my pain

level very high....just not sure how I am going to do it but I will, with a

smile on my face, a bounce in my step and a friendly smile. Then when I get

home, I will cry to myself as I take my pain meds, rub on the tiger balm,

plaster on the Salon Pas and spend half the night looking for a comfortable

position to sit/lay in. I have a car payment to make and that is my

incentive to get out of bed and go about my day. I know it's hard sweetie, I

do. All I can say is hang in there. It saddens me that we all suffer

needlessly so and compassion is a hard thing to find. You have it here

honey. Vent/rant away. I am sure we are all here to listen and offer a

helping hand when we can......I know I am

Peace and fabulous smellies!

Katrina

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[Guest guest]

Hi Katrina!

Welcome to the group! You do some of my favorite things!

Reading/editing/publishing and spa!!! I am 36 and live in Michigan. I have

three dogs too. A black lab, Sierra, a sheltie, Sky, and a chipoo, going to be

2 named Bella (she is also a service/therapy dog for my anxiety). I was

diagnosed with CFS in college when I was 19. At 28, I became ill and it took 2

years to diagnose with FMS. Then 2 years later along came the inflammatory

arthritis. You have come to a very supportive group! Everyone is so caring,

understanding, and supportive here. It's a great support system and a great

learning experience as there are always updated research we learn!

Katrina Stiles <spaladyfl@...> wrote: Amber,

First let me say gentle hugs. Girl, I know what you are going through. There

are days my body is demanding that I remain in bed and rest but life

prevents that from happening. I review and edit books, I do in home spa

parties for The Body Shop At Home and I am the Publicist for Dean Van

Scoyoc, a gothic/horror author. I can do most of my work from home but there

are days that I have to go out and do the in home parties...it takes alot

from me and quite frankly, I am thinking of dropping from in home party job

because the toll it takes is becoming too much. I love it, I have a blast

and I love the money but the next day, even the night of, I pay for it

dearly physically. I have one this coming Thursday night and I don't know

how I am going to pull it off as my sleeping has been very little, my pain

level very high....just not sure how I am going to do it but I will, with a

smile on my face, a bounce in my step and a friendly smile. Then when I get

home, I will cry to myself as I take my pain meds, rub on the tiger balm,

plaster on the Salon Pas and spend half the night looking for a comfortable

position to sit/lay in. I have a car payment to make and that is my

incentive to get out of bed and go about my day. I know it's hard sweetie, I

do. All I can say is hang in there. It saddens me that we all suffer

needlessly so and compassion is a hard thing to find. You have it here

honey. Vent/rant away. I am sure we are all here to listen and offer a

helping hand when we can......I know I am

Peace and fabulous smellies!

Katrina

between 0000-00-00 and 9999-99-99

[Guest guest]

You are in the early stages, where you are just learning how to cope w/ this

disease. Each person must find what works for them and sometimes make some hard

decisions. Find the medications that work for you. Find the lifestyle that

works for you. Some days will be harder than hell, most days will be manageable

and tolerable. Some days you will feel GOOD again. Cherish them.

Take pain pills if they help until the other drugs can work. Decrease them on

good days.

If one treatment plan doesn't work, look for a new one. Know there is no

cure, only management and that changes constantly.

I chose to attempt to keep my VERY active lifestyle as close as possible. It

means a harder drug regiment that will probably shorten my lifespan. But it is

what I chose. My mother had SLE and an inactive lifestyle. I would rather die

younger than live the life(?) she did her last few years. We each must choose,

then find the doctor(s) that will work with you.

It does get easier as you learn how to manage it.

God Bless

Garrett dvm

amber michelle <ambermich@...> wrote:

I am soo miserable today, i just do not know what to do. Since i have

been working i have felt 2 times as bad but i have to work or we loose

our house and cannot eat, we are VERY broke right now and all the

medical cost (having a baby and this ) is not helping either. I swear

they just hurt like crazy today. I do not know what to do to get

through these awful days. how do u all manage these kind of days?? i

have dropped everything i touched, my feet are tingling, throbbing with

stabbing pains, it feels like i am walking ON something. I just do not

know how to pull through days like today. I am taking the prednisone

but it has not done anything much yet..... day 3, taking my lyrica

(have not increased the dose yet to 300), even took a hydrocodone

today, i hate taking them but i do not know what else to do......

anyway i guess i am venting.....i got to work the next 3 days in a row,

pray for me i know i will be insane.

amber

between 0000-00-00 and 9999-99-99