Lupus/RA - yes, 😢both - came into my life 'uninvited' 9+ years ago and they have been unwelcome guests ever since, only leaving me 4 mos of "peace" thru remission last summer.
I've been thru the "ringer" - tried every medication, Alternative therapy, Herbals, Dietary, just anything & everything KNOWN TO MAN to try to get some quality of life!
The latest has been an 'assault' on my heart which has left me with a heart arrhythmia and EXHAUSTED! My body feels TERRIBLE & SICK.. and sometimes I wonder when it's just going to "give out" all together!
Really all I want is to see our children grow up. It makes me sob just considering a life without their Mother - without ME! I cannot imagine how they could ever be ok without me .. & so I pretty-much have been in "denial" for yrs and yrs! I think there is a fine line between "denial" and "hope"! I think I've always known things would get bad but I was just trying to get thru each day & not worry.
I have pretty-much had one LONG, GIANT "flare" for the past 9 years & pain everywhere is excruciating.
In 3 wks, I am to start Actemra, a newer IV INFUSION "Biological Agent" to try to achieve remission. Nothing has worked so far. It seems I get "mild relief" fro prednisone, but only in high doses.
I am actually "scared out of my mind" to try this but it seems that I've exhausted all else/other efforts!
The Rheumatologist says it's the "BEST COURSE OF ACTION" but I'm worried @everything bc I am a Pharmacist and i know far too much about these meds, their dangers/precautions, ADR's (adverse drug reactions), statistics, etc etc. I'm a WRECK @it quite honesty as I have nearly died several times (GI bleed, Liver shutdown x3 times, heart arrhythmia). And I think I SHOULD be scared! This is a very dangerous med to try which is why it is "at the end of the line" & I am afraid if the Dz doesn't kill me, the MEDS will! 😞
I feel TERRIBLE all the time😁and pain is WAAAAY out-of-control! (I see Pain Specialist on Tuesday) & I hope that helps a little bit.
So so tired / no sleep due to 1). Heart arrhythmia, 2). high-dose steroids & 3). level 9 pain all the time!
I am a "FIGHTER" - I've fought long & hard! And I must MUST continue to do so bc our children DESERVE to have mother, albeit a "sick & broken one". Our kids have been great but this is beginning to take its toll on them too! They've watched me suffering their ENTIRE lives! I can SEE the worry in their eyes & it breaks my heart. My husband has been like a SAINT but it has began to affect him too as NO ONE wants to watch their life partner fall deeper into the trenches of illness!
I sometimes feel it's not fair to him .. He didn't sign up for this! But he continues to love me & support me in every way possible, which I am MORE than grateful for!
It's been a long night - slept maybe 4 hrs and just want pain gone!
I praying for a miracle & many others are praying for that too.
The last few days have been good for "soul-searching" and I've found info that I think may help as much if not MORE than medication! I have been given these "signs" numerous times but I have otherwise ignored them bc of our families religion & the fact that they do not support it.
However, I am beginning to see that much of what we may "believe" is actually quite wrong! People do not give themselves enough credit when they have "God-given" tools to help us! We have them right INSIDE OF US - in every 1 of us - and if one "quiets the mind" & really listens to their spirit-self (& NOT the "voice" in our head which is "EGO") I think we can accomplish ANYTHING in this life!
Our "Spirit-Self " HAS all the answers! We just didn't KNOW who to address the questions to!
Well, I DO now & thus I am going to MAKE THIS MIRACLE HAPPEN & kick Lupus/RA OUT OF MY RESIDENCE!
