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bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 3/14/2007 10:38 AM (GMT -7)   
I've tried to post this several times I'll give it another try. Derm's office had the wrong fax # that is why rhuemy was of no help.They said my labs was fine, ana has not changed & then after several attempts of me trying to find out the rest of the results & telling them that I didn't understand why I was so sick she came out & told me I am positive for sle & scle. This has made me very uncomfortable. I feel like they are hiding stuff from me! She said they would fax my labs to new rhuemy & that she should be calling me (that real reassuring lol !) She just acted like I was another nut case! It could take her days to even look at them! I know I have to start plaquenil now but I can't seem to find the right time. My son took my truck to work & I'm scared to start it with no way to get somewhere in case it makes me sick. To top all this off here a couple of days ago I found out my husband is tired of all this. He doesn't understand lupus & doesn't want to hear anything about it! He told me I've put him in a hell of a situation! ( shame on me) It is amazing to me to be married for so long & be done this way. It makes me wonder how long he has felt this way & how long I've been living this little lie! Girls if you have a man that stands behind you you've got a good man & I envy you. 

keepnitreel
Regular Member


Date Joined Dec 2005
Total Posts : 68
   Posted 3/14/2007 10:54 AM (GMT -7)   
Oh honey ((((((hugs))))) I am so sorry to hear about your situation. I know it's scary to hear you have lupus. I don't know what scle is but I'm sure it's along the same lines of an auto immune disease (contaneous lupus maybe?) Anyways, my husband for years didn't understand. He didn't come around until I took him to my second Ruemy appt. when I was officially diagnosed with SLE. He asked the Dr. questions and she answered them. I think our spousesneed to hear how serious it is from the Dr. themselves before they really get it. If he isn't willing to go to the Dr's. with you, maybe he'll come around eventually. I really hope so! Until then you know you can always get comfort from us here. If you need someone to talk to, just let me know. We can go to the chat room and continue. I wish the best for you and will keep you in my prayers. Maybe joining a support group will help you to learn how to deal with your disease. I know you want your husband to be there for you, but in the mean time, till he comes around, you still should have support from people who DO understand. Like I said, if you need to talk, I will be here for you. How long have you been married? Do you have any children? How old are you if you don't mind me asking? It's really none of my business. The bottom line is...if you need support, we will be here for you. I will say a prayer that your husband see's how he is acting. Give him some time though, this is not just a battle you are dealing with, it's all new to him too! But life throws you curve balls and part of being in love is being supportive through good and bad, sickness and health, till death do us part. It's not like you did this to HIM! This has happened to YOU, but effects him just the same. Maybe talk to him and let him know how it hurts you and let him know that you didn't want this to happen. Of course you didn't, but saying out loud sometimes helps. I wish you well. You are in my thoughts sweetie! Take care, Jyllian
SLE (Lupus) Dx'd - Nov. 2005, Raynaurd's - Dx'd Nov. 2005, GERD - Dx'd 2006, Fibromyalgia - Dx'd 2005, PCOS - Dx'd Jan. 2007, Migraines - Dx'd 1995,
Optic Neuritis - Dx'd 1984,

Currently taking - Plaquenil 200mg, Prozac 20mg, Spirnolactone (Aldactone) 50mg, Vit. A

Occassionally take - 1/2 500mg Vicodin (2-3x/wk), Maxalt as needed for Migraines,
Clonazepam 1mg as needed for sleep and muscle pain,
Relafen 500mg as needed for pain, Pepsin for Gerd
Prednisone (for emergency use only)


bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 3/14/2007 11:11 AM (GMT -7)   
Yes it is cutanious. I am 38 & have 3 children ,21,12,&16. we have been married over 16yrs. The problem is I'm mad now. How selfish could a person be? I never shut him out before. The problem is his family does'nt believe that I'm sick. His mother has told me that I need to get over it, that she knows people alot sicker than me! his aunt who was once grandmothered in nursing thinks that all I need is anti-d 's. They don't believe me. I am too sick to even care at this point. I shouldn't have to prove anything to them! I am so hurt Idon't want to even hear from anyone of them.

Bitzi
Regular Member


Date Joined Mar 2007
Total Posts : 89
   Posted 3/14/2007 12:09 PM (GMT -7)   
bhkhhh,
One thing I have learned from my own husband is that men feel like they should be able to solve their family's problems and when they can't they feel like they have failed. What typically happens next is that frustration takes over and they respond by slamming the door on the situation. I really think that his reaction says more about him and how he feels helpless than it does about you. Tell your disbelieving relatives that if you were going to make up symptoms you would be more creative than aches and pains. I tell people that treat me this way that I was born with a tail and that usually shuts them up ! lol
B
ps ( I was not really born with a tail)
HANG IN THERE
 
Bitzi


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/14/2007 12:40 PM (GMT -7)   
Hi Bh,
  (((Hugs))) I'm sorry your having to go through all this! It's hard enough being sick alone, but when your family isn't suportive it makes things alot worse. You don't need that stress on you. I hope your husband will come around soon to give you the support you need, and your right, you don't have to prove anything to any of them! You know your sick and they will just have to accept it and be there for you.
  I hope you will get more definate answers when you see the rheumy on your labs. I know this is so hard on you. Just know that we are here for you when you need us. You are not alone in this!
  Please keep us updated and take care. You will be in my thoughts and prayers.
                                                            ((Hugs)) Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


montecarlo
Regular Member


Date Joined Feb 2007
Total Posts : 235
   Posted 3/14/2007 12:52 PM (GMT -7)   
BHK,
I am so sorry to hear the SLE,but now you know-as hard as it is,but maybe now you can get med's to help you,I am so ,so sorry.
I do agree with Bitzi,some men need to ''fix'' a situation,but I know there is the odd day were my husband starts the ''compare'' game-I think he looks for validation and support in a weird way(he's gonna loose that finger if he doesn't stop p'ing/moaning about that wart! )
Family and friends that either don't believe or are burying their head in the sand,have to realize ,we were not put on this earth to live up to their expectations,(nor are they to live up to ours).
I said I agree with Bitzi,and I do,but there is also the possibility that this may be quite ''normal'' behaivor ,I think that only because I get that feeling from my husband sometimes,it's like they want to pretend everything is fine(medically)-my husband I use to go at each others throats before I was diagnosed,no matter what I said,he was doubtful and angry,and when I was hiding it ,he was questionable and angry as well-I just couldn't get it right. Do you think you can talk it through?
My thoughts and prayers are with you ,along with best wishes,and for the record,I care about you a great deal and would no matter what the circumstance,I think you have alot to offer and think you are a doll!xx00
crystal

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/14/2007 2:25 PM (GMT -7)   
bh, I'm sorry for all you are going through and what your husband said to you. I don't blame you for being angry about what he said. I don't know if you have heard
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/14/2007 2:31 PM (GMT -7)   
bh, I'm sorry for all you are going through and what your husband said to you.  I don't blame you for being angry about what he said.  I don't know if you have heard us mention it here before or not, but there is something written called The Spoon Theory and you can find it at butyoudontlooksick.com  The Spoon Theory does a great job explaining to healthy people what it is like to live with lupus everyday.  I printed out several copies and gave them to my family and a few close friends.  It did help my husband understand things better.  Even though my husband is supportive most of the time, I still worry about the effects of my lupus on our marriage since I have very little energy for him or our relationship on a lot of days.  I try, but I'm not always able to.
 
I hope things settle down for you soon.  At least you found out what was going on with your labs.  Just try to be gentle with yourself right now. 
 
Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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