View Full Version : Frustrated

12-18-2008, 11:36 AM
I am new here and recently found this site after finding that my family denies the seriousness of my diagnosis. I feel the need to vent to someone who undertsands so here it goes.

I was diagnosed with a form of Lupus I had never heard of, Cerebral Lupus aka CFS lupus in June of 2007, after a broken leg wouldnt heal. I was devastated but also thrilled because it meant that for the last 9 years i wasnt crazy or immagining the things that were wrong with me.

I told my mother first and she was immediatly racked with guilt since she felt that I was in her care when my the onset of symptoms occured. She passed it off as normal puberty aches and pains and just said i was fragile.

Then I told my husband. No reaction.

I passed off my husbands insensitivity to the subject as his way of coping.

Then in October we founf out I was pregnant, Something we didnt think was possible since I have the underlying secondary diagnosis of Antiphospholipid Antibodies and had only had 1 live birth out of 10 pregnancies.

Obviously treatment was impossible at this point except for blood thinners to keep the cord from clotting.

Well My Lupus symptoms went into remission while I was pregnant and I had never felt better. Then all Hell broke loose after I delivered our baby prematurely due to lupus complications.

Well the baby is doing finee but I am not.
6 moths after our daughter was born I am still the primary caregiver for her and my oldest daughter and my husband. Noone seems to understand that lack of sleep causes my brain to swell, I have seizures, My limbs go numb and I feel like my joints will burst if i take one more step. Well I dont have to go one about the symptoms I have You all know lol.

My frustration stems from me giving my husband choice when I found out I had it, I told him that this will be a long and difficult journey possibly resulting in death (my diagnosis has a life expectancy of 5 years after onset of symptoms its been twice that for me) I said i would be honored to have him by my side through this but i understand if he didnt want to. ( He didnt marry me with this so why should he stick around basically) Well he chose to walk with me but it seems that although he is by my side he isnt there. This post has taken me the better part of the morning to complete due to the pain in my hands and it seems that he doesnt understand how he takes me being here for granted and everything I do. I have tried very hard to maintain the life we used have and it seems that the only way he will truely understand is if he walked in my shoes.
I guess I'm more hurt than anything that everyone including my spouse are discrediting me and denying me and what i've seen in my bloodwork. Shouldnt I be the one denying it instead of embracing it?
Shouldnt I be the one saying it isnt true?
I'm so sick of people telling me the Dr. was wrong and that the lupus is a figment of my imagination and I am creating my sypmtoms by talking about it. I guess I just want recognitionfor the fight we put up everyday. And for all those things people take for granted that we cherish, Opening a jar of peanut butter, walking through the mall, sleeping in peace and waking up refreshed not having to worry about your childrens health an if you gave them this awful future. I guess I just need someone to talk to who understands and wont belittl me and my symptoms. I'm sure my family just is in denial because they dont want tothink of what it means but I'm still here I'm not dead yet.

12-18-2008, 01:35 PM
Hi Gurkinbabies,

My name is Rob, and I was diagnosed with SLE five years ago. I read your post, twice, and it's heartbreaking to read it, and hear the hurt behind your words. Your words really hit home. There are so many of us with Lupus who have the same problems, pain, and emotional heartache that you speak of. I don't know why people are the way they are with us. I was with a woman for six years, and we were set to get married, then my diagnosis came. A week later, she told me she needed a guy in her life with a future, not some guy who will just be dead in a couple of years. She left. I had people close to me who I loved, and trusted, and they accused me of making the whole thing up to get attention, or to get out of doing things, like work. Since I owned my own company, which was my dream job, and practically lived in my shop, the getting out of work part was especially ridiculous.

I wonder if your husband has ever gone with you to a Dr's appt. and heard first hand, directly from the Dr, that you do have a form of Lupus, and it is indeed quite serious. Talking to my rheumo first hand, face to face helped my father realize, and accept the seriousness of my situation, and I do believe that he was simply in denial. He's so helpful now it's like he is a different person. Of course, there will always be some people who will never understand or accept your disease. Sometimes those people are easy to cut out of one's life, and sometimes they are not. I managed to cut out all the non-believers, but it took time, and was a real heartbreak in many cases like with former friends, and the former Fiancee.

I wish there was an easy answer to all this, but there isn't. But, you do not have to be alone on this. I'd say probably every single member here has been through what is happening to you, and believe me, we understand. I think it's a great great thing for your husband to choose to stick with you. He may very well be in denial like my Dad was. I hope you can find the answers, and solutions to these problems ASAP. In the meantime, know that there is at least one place-here, where nobody will doubt you, or judge you. Welcome, and please make yourself at home here. Never be afraid to talk, we'll listen.


Angel Oliver
12-18-2008, 03:02 PM

My name is Angel. I so understand your heart ache. I am so glad you found us '' YOU ARE NOT ALONE'' and we all fully understand what you are going through. I am sorry this is short, as i have a huge headache, but i will catch up with you soon. Just know, everyone here are lovely and caring....keep posting.....we can get you through it with love and knowledge. Some of us like our chocolate too much and may not share that lol but everything else is yours. :) I felt so alone, so ill and like it was all in my head and like an attention seeker.......until last week and i found this site......i know now.....im not alone.

Thinking of you and sending you hugs.

12-18-2008, 03:46 PM

I agree with Rob. If you have a decent rheumy, then the dr. should have no problem informing your husband of your plight. Or, you could let him read some of the symptoms, stories of members of this forum.

When we were fighting my daughter's breast cancer, her husband decided to become a non-member of the team. He even decided that he was going to become a vegetarian. (their children were 2 and 3 at the time.) Everyone kept saying "oh, he is in denial" Well, I did not buy it.....that was the time to stand up and fight, not hide. I was told some people just can't help it.

I have taken my daughters to a couple of dr. appointments, and their eyes were opened. (they are adults). I also gave them this forum web addresss, and they both admit that they have learned the most from reading entries.

Welcome, hang in there. Please feel free to release stressful occupants of your precious mind anytime that you want.

Share a smile today,

12-19-2008, 12:26 PM
Wow I am overwhelmed by the outpouring of support. Thank you to everyone.

And in answer to the question about my husband going to the doctor with me... Your right he has never gone. But I can only blame myself for that. I let my health insurance go after I was laid off from work during my pregnancy (medicaid covered my daughters care and my prenatal care) So I have yet to actually be seen for treatment. We have a huge network of doctors where i live but only 2 rheumys. My diagnosis was an accidental discovery and before i could really grasp what it meant I was pregnant. So I really havent been treated yet just diagnosed. My husbands insurance is picking me up on the 1st of the month and then it's off to the docs for me.

I think he came around a little last night after i showed him this site. (he had read the literature i had posted earlier) After reading a few of the stories from other people and them sounding so much like me it was almost validation that this is real and the difficulties are not being exagerated. I think he needed to see that and hear it from someone besides me. (I kind of have a reputation as a hypocondriac but gee i wonder why...? lol)

In the past 24 hours this site (the people on it) has gotten meout of a depression andshown my husband the light. This is such a blessing and so are every one of you here. It sems thank you isnt enough but it is all I have. :B-fly: