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MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 8/14/2008 10:01 AM (GMT -7)   
Hey girl!  I haven't seen you around much lately?  Are you doing Okay?  Just checking in on ya!  Judy

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/14/2008 12:35 PM (GMT -7)   
Hi Judy,
 
(((hugs))), Thank you for asking how I'm doing. I'm not doing well.  I'm scared and upset about "my state". I was doing so much better since last Friday, and now today I'm back to feeling the way I did 2 weeks ago.  Everything hurts, I'm so fatigued, and just feeling crappy.  I've had a nice quiet week too.  No demands.  I do have my period though, which might be a big reason for how I'm feeling...
 
I finally see my rheumy next Wednesday. I'll do all my blood work on Monday so she'll have up to date results to share with me. 
 
Just feeling really low.  I feel like I'm only exisiting, not living. Life isn't fun right now. I'm having trouble finding my joy. I'm praying a lot and that really helps. Calms me down when I'm in melt down mode. Like just now. shakehead
 
You're a good friend Judy.  Thank you for being here for me.  How are you doing? Are your eyes better?
 
God bless,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/14/2008 1:38 PM (GMT -7)   
Ginny,
My eyes are much better, thank you. I go next week for some type of testing to see if the retina is damaged from plaquenil. I'm so sorry you are having problems. I wish I could do something to make it all better! I had the feeling you weren't up to par. Please know that you are in my thoughts and prayers! Let me know what the doc says. I see my doc on Wed. too. I hope your doc has a trick up her sleeve to get you back on track! God Bless you, Judy

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/14/2008 2:48 PM (GMT -7)   
((((( Ginny & Judy )))) you both are in my prayers. I hope your doctor appts go well.

Ginny, I sure hope your doctor can give you something to relieve these terrible symptoms you keep having, of course it could all be related to your period.... just a few more months and hopefully you will start feeling a lot better.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/14/2008 4:47 PM (GMT -7)   
Thanks Judy and Stacie,
 
You always know the right things to say smilewinkgrin
 
You know.  I have wondered about my period being the culprit. Or even just my hormones in general. Although, I haven't been able to track a trend. I will definitely be getting all my hormones checked. 
 
The worst part of these symptoms is the overwhelming fatigue and how my limbs feel like they weigh 200 pounds each.  I feel like I'm moving, walking, thinking, talking, seeing, doing everything through a vat of honey.  My head feels like it's full of gauze.  If I knew how  to treat this, it wouldn't be a big deal.  But going up on the prednisone makes it 100x worse, and going down on it makes it bad too.  I'm stuck!  I feel like my medications aren't working anymore.  I used to be able to recognize the symptoms, do my thing with the prednisone and be back to normal in a day or so.  Not now.  This is new territory that I've never been in before. I feel totally and completely different. 
 
Has anyone else had their lupus or fibro change so dramatically in such a short period of time? This has only been going on for me the last 4 months or so.

Judy, I'm glad you're seeing your doctor on Wednesday too.  I'll pray that your eyes are okay and there is no permanent damage.  We'll touch base next Wednesday and see how each other did, okay!  Love ya!


I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/14/2008 5:06 PM (GMT -7)   
Oh Ginny, I'm so sorry you are so sick. I read where you said you were in a flare recently. I was hoping you were doing better. It's so frustrating to feel like you are almost a normal human being and than WHAM. you're down again. It's a horrible feeling. When I get feeling good I almost am afraid of it because it's such a let down when I get sick again. It sounds like maybe you are coming out of somthing though. Somtimes I will have real bad days and then a good day and a few more bad days as I continue to improve. (just trying to think possitive), That's good you will have your blood work up to date. Hopfully what ever the problem the doctor will be able to get a handle on it and get you back to enjoying life again.
I'll be praying you have a good weekend
hang in there
love ya
carol
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/14/2008 5:09 PM (GMT -7)   
Ginny,
I will touch base with you on Wednesday. I have been in this "territory" before. It is miserable and depressing. Although the mental picture of you functioning in a vat of honey with gauze for brains was a little humorous, although a 'dead on' description of how it feels. It will be interesting to see if you are anemic. That is what i'm battling here lately. I can't sustain my counts. Are you short of breath at all? Please keep me informed. I will be worried until they get to the bottom of it! Love ya, Judy

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/14/2008 5:48 PM (GMT -7)   
Ginny, I've noticed a few new symptoms and old ones that are worse than ever before. Here recently I haven't felt like cooking dinner, even sitting on the couch hurts my legs, feet, hips, something! Earlier my feet even turned blue! I too feel like my meds just aren't doing as well as they were. It amazes me all the meds I take, most of them for the joint pain and I still have A LOT of joint pain.... I wonder how it would be if I wasn't on meds.... now that's a scary thought. Yesterday I had some weird chest sensations, very hard to explain, things just didn't feel right. I've also had some pain around my kidney's and my labs revealed that my BUN was up from 14 to 18, not a huge bump but maybe enough to make me feel weird. As I have said before.... my body hates itself and it sucks (sorry, just the way I am feeling)!!!!

I pray you feel better Ginny, I wish there was something I could do. ((( hugs ))))
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/14/2008 6:58 PM (GMT -7)   
Thanks you guys. I love you all too....
 
Judy, I'm glad to be the source of some humor.  Seriously!  I laughed out loud when I read that you laughed out loud! Hahaha... Oh, some comic relief is so needed.....
 
But you're right.  I"m getting depressed.  I know I am. I cried more than once today. Mostly because i'm just so tired of the pain and discomfort I'm in.  I picture myself having to live with this for the next 40+ years and that thought makes me bawl. 
 
Stacie, I don't ever feel like cooking either, LOL.  And sitting on the couch makes my back, hips and neck hurt too!  I can't be comfortable anywhere, even in bed.  There is no escape from this pain.  I think that is getting me down more than anything.  The BIG BULLY is back and it's picking on me.  I DON'T LIKE THAT.  nono
 
Carol, I wish I knew what this was.  It's nothing like I have ever experienced.  Is it residual from what happened last summer?  Is my body changing?  I just don't know.  I know you understand what this is like. You've been through the wringer too.  How do you cope? Obviously my coping skills suck because I'm having a heck of a time getting a grip. 
 
Thanks for hearing me out you guys.  I need to go have a good cry.
 
Love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/17/2008 7:38 PM (GMT -7)   
Ginny,
I get so frustrated when I get on a crying jag. But, it can be therapeutic and cleansing! Have you ever hear the joke about the man that is sitting in the doctor's waiting room and everybody that comes in, he catches what they have? A cold, a rash, etc. Then a pregnant lady comes in and he jumps up and leaves! I feel like that man! It's like every thing that has been coming up in the forum, i'm experiencing! What a hypochondriac! If somebody pops up in the family way, I aint comin back!! :) I see my neph. on Wed. and my eye doc on Friday. I'll be praying for you this week. I know you have an appt. Wed. Are you any better? I went back up on the dreaded pred tonite. take care! Love ya, Judy
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