Thought I would post

[Guest guest]

Things have been pretty rough physically. I don't talk about the way

I'm feeling to my Dad or kiddo's because I don't want to worry them.

Honey was here until yesterday morning, was really nice he helped me

soooo much even wrapped the airconditioner's. The separation has been

good for both of us.

I've been on the Methotrexate shots an always on something like

Remicade or Humiria with the Metho for about four years now, was

taken off due to infections almost two months ago. The doctors with

the approval from my Lung doctor had me get back on the Metho and

Humiria about two weeks ago. Use to I would get nausiated off and on

but as time went on and my body got use to the drugs it got better

after surgeries. Oh my I'm sick this time around starting back. It's

so embarrasing Honey and I went out to eat twice and I didn't eat

much at all and had to run to the bathroom, not just the nausia but

can't keep anything down and stomach cramping. I'm taking the

phenergan, the other day couldn't even hold that down. Energy level

is zip. A friend wanted me to go to a Christmas store yesterday and I

couldn't because one my stomach and I'm just sooo tired. I just hate

having to say I can't. Don't want to end up in the bathroom for an hr

and feeling trapped like when me and honey went to Walmart UGH. Has

anyone been takin off there Metho or other Lupus or RA meds and had

this hard of time getting adjusted? My Alk Phos and Sed Rate went

real high Rheumy said I have to be back on my meds UGH. Catch 22.

I posted a while back about the oxygen machine and apnea machine

Pulmanary doc has me doing at night. I try to keep it on but when I

have the eposodes, I wake up and have to sit up taking deeeep breaths

to get the air back in my lungs, like I have to catch up breathing.

When I wake up during this the mask scares me and makes it worse,

have to take it off. Then when I wake up I have bad pain like at the

bottom of my right lung. My respatory therapist with home health care

called my lung doctor and the nurse called me and said my LD was

worried this was going to happen because the problem is more of a cns

problem where my brain is telling my lungs to breath and there not

doing it when I'm sleeping. What a mess, I just want them to fix the

problem because its very scary for me when it happens.

Does anyone have cns involvment where its effecting you in this way?

The Respatory therapist is going to be here on Thursday to set me up

with some more testing Ugh. Thursday night its going to be just the

oxygen for two nights there going to do a monitor that records

respatory events with oxygen levels. From the other testing my oxygen

goes wayyy down and my heart goes way up. They said I was having like

72 per min but I only know it when it is bad and wakes me up.

Just wish they would get things under control. I don't want to tell

internist about my stomach because he'll make me get a colonoscopy

and endoscopy, he mentioned it a while back due for one.

Sorry so long I'm just a big frustrated right now and a bit

depressed. If you have any input or know about this stuff please let

me know.

Love, Theresa

[Guest guest]

Theresa, I don't have much insight to offer, but I ended up having terrible

stomach nausea

for a period of six weeks and was referred to a gastro. He did an upper gi

which really

wasn't bad - went right to sleep. I had gastritis which he believes was from

all the

medication I'd been taking up to that point.

I hope things improve for you soon.

Paige

>

> Things have been pretty rough physically. I don't talk about the way

> I'm feeling to my Dad or kiddo's because I don't want to worry them.

> Honey was here until yesterday morning, was really nice he helped me

> soooo much even wrapped the airconditioner's. The separation has been

> good for both of us.

>

> I've been on the Methotrexate shots an always on something like

> Remicade or Humiria with the Metho for about four years now, was

> taken off due to infections almost two months ago. The doctors with

> the approval from my Lung doctor had me get back on the Metho and

> Humiria about two weeks ago. Use to I would get nausiated off and on

> but as time went on and my body got use to the drugs it got better

> after surgeries. Oh my I'm sick this time around starting back. It's

> so embarrasing Honey and I went out to eat twice and I didn't eat

> much at all and had to run to the bathroom, not just the nausia but

> can't keep anything down and stomach cramping. I'm taking the

> phenergan, the other day couldn't even hold that down. Energy level

> is zip. A friend wanted me to go to a Christmas store yesterday and I

> couldn't because one my stomach and I'm just sooo tired. I just hate

> having to say I can't. Don't want to end up in the bathroom for an hr

> and feeling trapped like when me and honey went to Walmart UGH. Has

> anyone been takin off there Metho or other Lupus or RA meds and had

> this hard of time getting adjusted? My Alk Phos and Sed Rate went

> real high Rheumy said I have to be back on my meds UGH. Catch 22.

>

> I posted a while back about the oxygen machine and apnea machine

> Pulmanary doc has me doing at night. I try to keep it on but when I

> have the eposodes, I wake up and have to sit up taking deeeep breaths

> to get the air back in my lungs, like I have to catch up breathing.

> When I wake up during this the mask scares me and makes it worse,

> have to take it off. Then when I wake up I have bad pain like at the

> bottom of my right lung. My respatory therapist with home health care

> called my lung doctor and the nurse called me and said my LD was

> worried this was going to happen because the problem is more of a cns

> problem where my brain is telling my lungs to breath and there not

> doing it when I'm sleeping. What a mess, I just want them to fix the

> problem because its very scary for me when it happens.

>

> Does anyone have cns involvment where its effecting you in this way?

> The Respatory therapist is going to be here on Thursday to set me up

> with some more testing Ugh. Thursday night its going to be just the

> oxygen for two nights there going to do a monitor that records

> respatory events with oxygen levels. From the other testing my oxygen

> goes wayyy down and my heart goes way up. They said I was having like

> 72 per min but I only know it when it is bad and wakes me up.

>

> Just wish they would get things under control. I don't want to tell

> internist about my stomach because he'll make me get a colonoscopy

> and endoscopy, he mentioned it a while back due for one.

>

> Sorry so long I'm just a big frustrated right now and a bit

> depressed. If you have any input or know about this stuff please let

> me know.

>

> Love, Theresa

>