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German Lady
New Member

Date Joined Jan 2010
Total Posts : 5
   Posted 1/27/2010 2:37 PM (GMT -6)   
I have been living with Lupus for the last four Years and four years is what it took to almost destroy my marriage. I had it in my head that I don't need counseling or coaching and nobody needed to know what is going on with me. I stopped communicating with my Husband about my Pain. And the only way he would know that I was hurting was when I was being mean and nasty with him. And of course he would say things like DID YOU TAKE YOUR MED'S TODAY? and that would put me over the edge and make things even worse.( I want everybody to know my Husband is amazing and put up with allot of well you know what)
Two months ago my Husband asked for a separation and requested that I take myself on and get some help. I hired a Life Coach and went on a mission to safe my marriage and myself from further destruction.I have called every member of my Family and every friend I have, to apologize and to ask for there support. I was so amazed at all the support I had denied myself.
My Husband is back and I am so happy about that. The reason I am sharing this , I want everybody with Lupus to know that communicating your pain and feelings to your friends and Family is key to having less flare ups. I am no longer mad at the world and I have the support I need. I believed letting people know about my pain would make me look week and I have learned that it is quiet the opposite. I am now empowered and have a sense of freedom.
Love and happiness and of course no flares to all of you

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 1/27/2010 4:46 PM (GMT -6)   
Welcome German Lady! I would like to thank you for sharing your story! I have been dx for almost 5 years and my husband has been very supportive but here lately it seems he hasn't been as understanding. I don't know maybe it's just me, sometimes I vow not to complain or talk about lupus to anyone, including my husband. Thank you for opening my eyes and making me realize it is important to communicate how I am feeling with my husband, friends and family. Sometimes I can be very hard headed!

Thank you again for sharing your story and I am very glad you are working things out with your hubby, he sounds like a good one! Take care
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 and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)

Regular Member

Date Joined Jan 2010
Total Posts : 21
   Posted 1/27/2010 5:37 PM (GMT -6)   


My husband and I will be married 1 year in March. He had  a heart attack right after that, he asked me if I still wanted a broken down old man and I reminded him that I said in sickness and  in health. He has to take plavix and all kinds of meds.

So when I started having problems, I reminded him that HE said in sickness and in health. And even though our lives together are still very new, we have vowed to stick to one another to the end. So I've got me a good one. Oh we do have our bad days, but the making up part is fun.

I also have the support of my family, which does make a world of difference. But still have those days where I think I complain too much. Bless my mother''s soul, you know how mothers can be, she's always trying to doctor me up. That's where I had the ? about too much vitamin C. She's going with me to my next appt, just hope she doesn't start whooping on this dr. She's said that she doesn't like him for not taking the time to listen to me.

Regular Member

Date Joined Jun 2008
Total Posts : 363
   Posted 1/27/2010 6:34 PM (GMT -6)   
Welcome German Lady, Just wanted to say that I stopped being open about my pain and just took to secluding myself when I felt bad, which was most of the time. Even still, the bad "vibe" was always there. We just drifted apart until he found someone else to talk to. It was a brief internet fling that resulted in one meeting that I know of and although he says nothing happened, I will always have my doubts. This whole thing nearly destoyed our lives as well as those of our two young boys. It's been a rough 6 months and I still have my occasional worries, but we're working on it. Needless to say the stress sent me into the worst flare ever and I still haven't recovered from it. I am seeing a therapsit and working on things. Good luck and God bless you all.


PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Prednisone 15mg daily added 03/09.   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.



German Lady
New Member

Date Joined Jan 2010
Total Posts : 5
   Posted 1/27/2010 6:38 PM (GMT -6)   
Dear Staci,

I am glad that my Story inspired you. I have learned that every once in a while it is important to give our loved once an opportunity to tell us how it is for them to live with Lupus, because they are too living with it.
I did that with my husband and he had lots to say. My job was to just understand him and not criticize. I know for myself, when I was DX I became very selfish and everything became all about me and people around me ended up resentful but pretended that everything was ok. It all spills over in the end and instead of healthy conversation you end up not communicating at all. So what I am saying is give your hubby the opportunity to express his feelings and his needs and I promise you he will have a new listening and understanding for you. Hope this helps.

Best regards

German Lady
New Member

Date Joined Jan 2010
Total Posts : 5
   Posted 1/27/2010 6:57 PM (GMT -6)   
Dear puccini914, I am sorry that you are in a Flare I hope that you are feeling well soon.Remember communicating your feelings in a responsible way will clear up your flare. When our emotions flare our disease flares as well. I have found for myself that whenever I hold on to anger or resentment I flare up.
You are a brave woman and I wish you well

German Lady
New Member

Date Joined Jan 2010
Total Posts : 5
   Posted 1/27/2010 7:43 PM (GMT -6)   
I just wanted to check and see if any of you Lady's live anywhere near San Diego Ca. The reason I am asking is I would love to form a womans group that perhaps gets together once a week to have some fun. Not your usual Support Group. But going out for a meal or a Movie or playing Cards. I stopped doing lots of fun things since I have had Lupus and I really want to get back out there. Anyone In???

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 1/28/2010 1:05 PM (GMT -6)   
Welcome to our forum German Lady. Even though I'm somewhat of an expert on depression 'cause I've had it so long, I still make major mistakes. Some folks get angry with depression, some get tearful. Like Jennifer, this year I went into seclusion. All I wanted was to be left alone and I withdrew from all friends and family. I started having crying jags. I normally see a nurse practitioner in my psychiatrist's office and she was the one who told me I needed to the psychiatrist. He's made a couple of med changes and matched me up with a great therapist. I see an improvement each day. I appreciate you sharing your story. I'm sure you'll help lots of us. I'm sending lots of positive energy to you and your family. Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, prozac, wellbutrin, klonopin, neurontin, ambien, lisionpril, actos, nexeum, simvastin, lomotil, cholestryramine, claritin, nasonex,  PRN: tylenol arthritis, flexeril, phenegren, vitamins, Acupuncture.  Donna 

New Member

Date Joined Jul 2009
Total Posts : 9
   Posted 1/31/2010 12:09 AM (GMT -6)   
dear german lady............i live in san pedro, which is a fair drive from u & that is too bad.......i don't know if i could do anything like go to a movie, sitting a long time in one position bothers me, but a meal would b nice.........i use to live in escondido, which would have been much closer.......

i know about sharing with ur husband..........i get after him all the time about keeping things to himself "cause he doesn't want to *****"..........but he always feels better when i push at him.........i tell him most everything........i was recently dx, but i debated telling him everything all the time, cause, god as my witness, i married my mother...........she was such a worry wort & always carried those worries to the very ugly husband went off the deep end right away.......he's in iraq as a civilian contractor, he drives trucks for the army.......he was coming home, NOW!........but that would have stressed our living conditions & that would stress me......i take care of the finances........besides i'm not on my death bed........that just calling alot & letting me tell him how my day went was all i really needed........i told him simply, i will not allow him to bathe me, dress me, feed me, he's a terrible cook & i'm picky, is about all he could do for me & the rest i just have to b quiet, calm & lie down & rest.........if i was dying, that would b a different thing altogether...........we had been living with this thing for 8-1/2yrs b 4 it had a name, so the status quo is good for me.........he's happy driving strange places & i am ok alone.......i have my grandkids & kids when i need family around on short notice..........

so that's how we deal..........different strokes, u know??..........chris.........
systemic lupus, adrenal fatigue, hashimoto's disease....57, mother of 4, w/6grandkids, w/ a wonderful, understanding husband.........

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 1/31/2010 5:44 AM (GMT -6)   
Dear German Lady,

I also want to thank you for your contribution. I hope you'll stick around here with us because communication and support is what this forum is all about. I, for example, discussed my lupus with my husband much more in the beginning when we were both learning about the disease. We've reached the point where I can tell him with a word or two what's going on and he's wonderful support.

But it's here that I come to complain and vent, ask questions, and learn from others. This forum has been a real lifeline for me.

You're exactly right -- the initial feelings of being isolated and alone aren't healthy, and communication is key. Thanks so much for sharing.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 1/31/2010 10:52 AM (GMT -6)   
Hi German lady, My name is carol/ I just wanted to say hi and welcome you to the group. Most of the people I talk to are from here. They have taught me a lot. They have a lot of compassion sometimes I feel bad that I don't have much to give back. I have lots of family but they put the FUNK in dis FUNK tional.  My husband went to heaven 10 years ago so I'm not real sure where that is so we don't get together much and my son (who was in Iraq) 03/04 lives in idaho. which is about 1000 miles from here, well we don't talk a lot either but at least he's in the states. Last year really stunk living with my relatives trying to get money to get myself a place. I finally got my own place the first week in dec. yeah Not everything is peaches and cream but I have a choice as to weather I am going to let it ruin my day or not.
I really wish I had someone somtimes, to snuggle up with and be the big strong person that is going to make everything ok but I ain't holding my breath.
I think the counseling is a real good idea. Mostly because if a person think that their (partner) is going to fix everything they will be disapppointed. Not to mention it isn't fair. Half the  time I'm not even sure why I'm mad but I expect somone else to fix it for me.
Most of the time I am not thrilled about being sick but once in a while I think my life is fuller because of it. Some times the sun looks a little bit brighter, the music is a little bit sweeter and the hug from the grandkid last a little bit longer. well anyway I could go on but fortunately for you I'm gonna shut up now. lol.
again welcome to the group I hope you enjoy it here.

systemic sclerosis,scleroderma,sleep apnea, anemia, COPD

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 2/2/2010 3:05 AM (GMT -6)   
Hi German Lady,
Welcome to the forum. Thank you for sharing your story with us. I agree communication is a big part of any relationship. I'm sure your advice will help many people here.

I live across the country in Alabama. Hopefully, there are some members who live near you that can meet up on occasion.

We had a group meet up a couple of years ago in Georgia. It was nice meeting some of the members and putting a face to the names. It was a small group, but we had fun. I hope we can do it again one day.

Take care and good luck.

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