UPDATE - Feeling Awful - Off All My RA Meds

[Guest guest]

Hi all.

Since having that fun episode of vision/depth perception distortion and

my right leg going numb last week, and ending up in the hospital, I have

been taken off ALL my RA meds. I had the option of staying on my

MTX, but have opted to stay off it until I have been properly diagnosed.

Was sent to the Neurology Clinic at the hospital on Monday, had a 1

hour exam, and still no answers. I have bloodwork to complete and

have to wait up to 1 month to get an MRI....the waitlist here is long, and

I am getting in on an URGENT basis. Until that test is done, there is no

way to determine what is going on with my body. The docs feel it's a

Neurological issue, but need to do the MRI to make a more precise

diagnosis.

Had my eyes checked at the Opthamologist on Tuesday, and all is well

with that. Left there with my pupils dialated and a bill for close to

$200.00 including my eye drops for my Sjogren's.

I did not realize how dependant my body was on my RA meds until I

stopped taking them. I am horribly swollen and my fingers and toes are

all inflammed and hot. Every single joint in my body from my toes to

my jaw joint is killing me. I am on pain meds, but they are not cutting it

at all.

In hospital, they told me that the " normal " end of high for an SED rate

(test to determine inflammation/pain in RA patients), was 20. Mine was

at 52 !!!!!!!!! Just think, I wasn't even anywhere near as much pain last

week when that test was done as I am now. Would hate to think what it

would be. After they discovered that, I was given a second Morphine

shot, and two Percocet. all within an hour or so. Sadly, it still did not

relieve all the pain. I don't want to think how much pain medication is

needed to get this under control. While it didn't relieve my pain 100%, it

made me feel better than I've felt in 10 months since first being

diagnosed. As weird as it may sound, I felt so relieved to hear that the

nurses and docs understood just how much pain I was in. When you

have chronic pain everyday, after a while you start to question whether

or not it's really that bad or is it all in your head. I am relieved that

someone has validated what I have been saying and feeling all along.

Lastly, I received my walker, bath bar and bathing chair yesterday.

Although it was a HUGE blow to my ego, I know it's necessary to

have. I am so thankful that I have these items on loan for 3 months

through a local Red Cross program where I live. After that time, if I find

I need to purchase these items, I can do so at a discounted rate.

Financially, this is a huge blessing, as I don't have the money to put

into that sort of stuff right now.

Almost killed me to type this message, but I needed to vent about all

this stuff. I have made some wonderful friends through this group, and

that has been what's kept me going during the rough times.

Please, pray that I get an MRI soon and that I have a diagnosis as to

what is going on with me. I am terrified. I have two boys to raise on

my own and I can barely keep up as it is. I can deal with the RA, but

last week when I couldn't see or walk properly because of it....I was

terrified. The RA has restricted my body's movements....but loss of my

vision would deprive me of the few things I have left to do

independently - go online, send e-mails, watch TV, watch my boys play

football.

Thank you everyone for reading,