not been doing well

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.

 

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.

(((((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.

(((((((( 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!

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.