not been doing well

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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/25/2008 10:09 PM (GMT -7)   
I am going to update before I say anything else and forget my news
1. I had a car accident because of weakness in my right leg and problems focusing
2. I am on 20mg of prednisone and have been for a month with little improvement
3. Neurological issues have become a major concern- concentration, focusing, thinking, recall, etc...
4. Imuran was bumped up to 150 from 100 and in a week I go up to 200 (mg)
5. I am on provigil now so we will see how that does
6. I have an mri of the brain Saturday
7. I see the rheumy again the 13th
8. I see a kidney specialist the 3rd
9. I see a potential new pcp the 1st
10. Alexander is doing very well
11. I feel like crying see items 1-9
12. The doctor used the following words, "We may need to consider cellcept or even cytotoxin"
13. I am terrified
 
 
Okay, I have been offline, haven't done much of anything except sleep and care for Alexander but I need support.
 
While all this is going on my family has begun their toxic bull again and I just want to glo slap a few people until they get a few brain cells to function again.
 
My husband is inheriting 1/5th of 90% of (10% fee by auction company) whatever an absolute auction held at 6pm netted the family (25th) we hope to see tomorrow how much it will be. In 21 days the money has to be paid in full so a few weeks later maybe we will get a check. Ironic that is the best news I have especially when they expect it to be 10,000-15,000 that will be split.
 
Wait I am wrong on my best news cause my roof is finally being replaced tomorrow and I am not paying for it. We qualified for a grant to fix it.
 
Okay, I know this is choppy but it is the best I can do right now. I just need ppl who understand.
 
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/26/2008 8:21 AM (GMT -7)   

I am relatively new here, and certainly not at my best mentally.  One of my "off" days.  but no one else has responded to your post yet.

I can certainly identify with number 3.  I am there myself, and hate it when it rears its ugly head.

and I can understand about the car wreck and your need to cry.

The medication and tests, I don't feel qualified to advise you on. 

I can cry with you however and hold your hand if you need me to do so, until someone better able than me can arrive to give you the advice you seem to need asap.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/26/2008 11:03 AM (GMT -7)   
thank you Hester. Usually I am the one offering support or advice when I can. Lately though I feel I have lost all the ground I gained when we finally began treatment.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/26/2008 3:28 PM (GMT -7)   
redrose77 said...
thank you Hester. Usually I am the one offering support or advice when I can. Lately though I feel I have lost all the ground I gained when we finally began treatment.

you are quite welcome. 
 
I can certainly understand your position with all that you have just so newly endured.  Dialysis is not a minor thing just by itself, and you have had quite a bit happen to you.
 
I cannot remember all the ground you have covered prior to this date, due to my disabled mind (most likely), or I wasn't here for the details.
 
Just speak to us when you can, when you need to, and get as much rest as you possibly can.
 
I wish my mind was not on vacation so that I could respond to you better.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/26/2008 6:16 PM (GMT -7)   
(((((Redrose))))). I've been wondering how you have been doing. I figured you probably didn't have much spare time to be online while caring for a newborn. I'm really sorry to hear that your health is so bad again. I have read that some women with lupus can have bead flares after childbirth. The last thing you need right now is all the family stress. Hang in there and I hope the docs can find a med that will help you with very few side effects. Try to take care of yourself through all of this.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/26/2008 7:56 PM (GMT -7)   
Redrose I've been wondering about you too.  I'm so glad that Alexander is doing well.  I hope the increases in your Imuran will take care of this for you.  Trying new medications isn't something we like to do is it..... Well, you know you're in good company here and we do understand.  I think a lot of us have had major issues lately.  When it rains it pours.  Are we all more stressed than usual?  I don't know.  Just know we understand.  We're here for you,
 
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, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/26/2008 8:55 PM (GMT -7)   
(((((((( Redrose ))))))))

I am at a loss to respond to your post. SO much happening.

I would, though, think about "letting go" of the expectations you have of your family. It only sets you up for disappointment. No expectations, no disappointments. Then any good thing to come from them will be a blessing.

So much of life is in our perception. Having said that . . . you are certainly in a bad way.

Sending you hugs, prayers, hot tea, and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


blushladybug
Regular Member


Date Joined Sep 2008
Total Posts : 32
   Posted 9/27/2008 6:32 AM (GMT -7)   
redrose,
you have a newborn......what a wonderful gift. I am so sorry you are having to focus on so SO many issues at a time when i'm sure all you want is to snuggle down with the wee one. I also have had "flareups" after both of my two sons were born. I am sending you hugs and more hugs.....It is so hard to deal with our health when we have the little guys. Put pain and stress and sleepless nights together, and it's almost too difficult to think, as i remember, (i think-;) Here is what i did on some of my bleakest post-partum days. I set aside an hour or two. locked the door. get out your favorite jammies and make sure the wee one is clean and settled. make sure you have a yummy snack and a glass of wine (and why not?) then take a hot shower or bath. use the good smelly soap and just relax. comb your hair. wash your face, brush your teeth. use moisturizer. do not answer the phone. take your time. then just relax on the bed with your newborn....eat your snack.......snuggle. I think the couple of times i used this routine are the only ones i can remember from those early days. Please take some time and try to enjoy alexander!!!!
sending hugs and de-stressing vibes,
krista

ps. I also have ptsd......I have found that it is hard to 'feel safe' and that any little sound or ringing phone or interruption can set your mind spinning out of control all over again, just when you are carving out some comfort for yourself. Sometimes....alone is actually less lonely....if you know what i mean.

Post Edited (blushladybug) : 9/27/2008 7:42:31 AM (GMT-6)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/27/2008 6:11 PM (GMT -7)   
Thank you everyone. The provigil is helping some with being awake though no real energy or strength. My mri got canceled because of an insurance issue I don't understand. I am going to see if my local hospital will do it and ask for something to prevent a panic attack while in the darned thing. I hate enclosed places. I really wish I had a tub I could soak in. Ours is too small for anyone who is bigger than 4' 8" or a size 3. I am taller and definately heavier than the biggest person it was made to accomodate. Hubby said he wants to redo the bathroom for me because he knows how much being able to soak in hot water helps me. Plus he figures I deserve a decent bathroom. But first our kitchen has to be redone sink the sink is supported by a paint can and my food is all in boxes on the floor instead of in the cabinets (afraid the cabinets would collapse from the weight of anything).

So far I am sick to my stomach from the imuran increase. I expect it will only get worse when I go up next week lyto 200mg. I hate new medications because of all my allergies but cytotoxin scares me so much because my grandpa did cytotoxin when he had his cancer and it left him so weak and ill I think it contributed to his death rather than helping. I am so tired and feel so weak already I really don't need anything else that drains my strength away.

Alexander and I spend most mornings cuddling quietly, I talk to him and read to him but mostly we just cuddle and he coos and is beginning to babble at me. Afternoons we play as much as I am able and evenings he spends playing with daddy. I nap when he does so I get rest. He is so wonderful and just such a bright spot no matter what else is going on. I want to get this under control for me, but I also want to get it under control for him too.

I have rambled a bit, but I am having one of my clearer moments so I thought I would post. I tried a few other times today but couldn't make sense of what I wanted to say.

It is wonderful to be able to come here and talk to others who understand. I am so afraid I will lose who I am because of the neurological stuff. I could handle just about anything physical even never walking again but only if my mind remains intact. Without my mind living in this body isn't worth much, I have always viewed my mind as compensation for my body. I just want more time with me able to be me. My rheumetologist brought up the more extreme treatments because she is very afraid for me. She said that uncontrolled cns lupus can kill when she brought up cytotoxin. The fact I return in 2 weeks and we are being this agressive scares me. I don't know for sure just how bad it is but it would seem she thinks it is pretty darned bad because she usually tries to use the least medication and the mildest ones she can. She even tries to avoid too many xrays and such. She has always tried to keep me on the least medicine that we can and still control things. The fact I am on 20mg prednisone with my bones being thinner than they should but not at osteoporosis stage yet is a really big deal with her. She has always tried to avoid steroids with me for that reason.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


thickchic
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 9/27/2008 9:20 PM (GMT -7)   
Hello
 
Its been a wile since I been on here myself. I suely can attest to what you are going through, especially #3. After I had my son (who is now 16 mos) I had post pardum so bad I thought about hospitalizing myself. But im here to tell u prayer changes things!! Because of lupus I still have some anxiety especially right before my period. I began taking St John's Wort and it has worked I would say a lot.
 
Like you, I also have been feeling bad heath wise lately. I went up north twice and once i got back to fla...it was down hill...my body cant figure out if it wants to catch a cold or not which happens alot to me. (the flu symptoms)
 
I just hate it cause imma single mom and basically the only caregivier for my son...so trust me, I cry too!
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