Stress, flare and pred

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 3/12/2009 2:05 PM (GMT -7)   
Hey Y'all,  Well things are getting worse here.  My Hubby has been having trouble getting work, he's a painter and new construction is about at a stand still.  Since he's self-employed, we have no health ins., no un-employment and no stimulus aid.  I don't qualify for disability because I have been home with my kids for 7 years.  I've applied for SSI and medicaid but that's waiting on the second appeal decision.  All of this has thrown me into a horrible flare.  I'm sooooooo tired, my joint pain is now in my feet as well as my hands and back and any sun exposure makes me break out in a rash.  My doc doesn't want to go immunosuppressent road yet, because of all the damage it does and having two small children I would be sick all the time.  He gave me a script for a larger pred taper dose, but with my stress level where it's at I'm afraid it will make me crazy.  I feel like I'm some horrible junky popping pain pills and neglecting my kids.  Don't get me wrong, they're fed and clean (relatively clean for boys), but I just wish I had more energy to play with them and entertain them.  I find the most attention I can give them is snuggles while I lie in bed, and you know young boys(20 months and 6) won't sit still for long.  We've been applying for assistance from the state, which means more appointments.  I had to get a statement from my doctor stating that I can't work and it just about crushed me to see in writing "duration of illness-lifelong, nature of illness-chronic,progressive, debilitating".  It's like the last thread of denial I was holding onto was just snapped.  I can't talk about these fears with my DH because he's so stressed about work or lack there of.  Thank God I have you guys, where I can vent these feelings, ask for prayers and know that everyone here knows what it feels like at one point or another to feel so incredibly broken.  I even have trouble going to church these days because when I look up at the Crucifix I just want to surrender myself and break down, but I just can't let my kids see that.  Well, I guess that's the end of my rant, thanks for letting me vent.  It helps so much just to get all of this out.  God Bless you all.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/12/2009 3:18 PM (GMT -7)   
((((( Jennifer )))))) bless your heart, give it to God.......you will definitely be in my prayers. This disease is very hard to cope with from day to day. I am very blessed that I am still working and I will just as long as I can. I am feeling more and more run down each week cry but I will keep on keeping on.

I am not sure what immunosuppressant meds your doctor is thinking about but I've been on Imuran since 2005 and MTX since last Feb, knock on wood I think I have only 1 cold since that time, of course everyone is different. They both have been a life saver and I don't have to take pain pills on a daily basis.

I pray all works out with SSI, etc and that your hubby finds work soon! Hang in there, lean on the Lord and vent whenever you need to, that's what we're here for!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 3/12/2009 6:16 PM (GMT -7)   
Thanks so much Stacie. Part of me wonders if my doc is saving the mtx so if things get worse I'll have some options. I also think he's concerned about liver damage, etc. Thanks for the kind words.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/13/2009 4:27 PM (GMT -7)   
Jennifer, I had such terrible joint pain and the imuran, nsaids and plaq didn't eliminate it all. My rheumy suggested MTX a year before I started it. I am on a pretty low dose, only 3 tabs a week and it works pretty well for me and I have labs done every 2 months to monitor my CBC, liver and kidney function. It mainly relieves my horrific hip and low back pain. So even the low doses work! Good luck to you!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/14/2009 10:16 AM (GMT -7)   
Jennifer, I am so sorry you are going through a rough time. I know exactly where you are girl! God will see you through. I can't tell you how many times i've looked back and wondered how I made it through but somehow God made a way. Hang in there. You are in my prayers! judy

puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 3/14/2009 5:22 PM (GMT -7)   
Thank you all soooo much! It is so good to hear some hope. A friend of mine said she knows someone else who has Lupus and is in a clinical trial and feeling totally healthy!!! My doctor syas, that if it's a good drug it may be available in 3-5 years, so lets really pray for this one. I went to lupus foundation website a while ago and it said that it was 50 years since a new drug for lupus was apporved, I was really depressed about that until my mom said that maybe that means they're due for a breakthrough. I just can't help thinking that my boys deserve so much more from me then I can give them right now. I cry at night when I've lost my patience with them because I'm so darned tired all the time. I pray for the stregth to be a good mom, but sometimes it's so hard. With all that's going on in the world it seems wrong to be so focused on myself and my troubles. My prayers to you dear ladies (and 2 gents). May God be with us everyday and give us stregth and healing. Bless you all.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 

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