I am sorry for all that you have gone through. I have and ex and one of my sons that are the same way. However, I have found that many of my family that have taken the time to educate themselves has caused us to actually become closer. It is important that you do what you can to keep yourself healthy. If your family is not understanding, find another "family".
We will be here for you always. But if you can find a support group in your area, it would very likely be helpful. Even one that doesn't deal with lupus specifically, one that works with people with chronic diseases. Even a cancer support group should be helpful. I found that my health was more important than what others say about my condition. If they are unsupportive, they are not allowed in my home...just that simple.
Advocate for yourself and leave room only for what is positive.
I am sorry it's been so difficult for you. I know that you aren't going to want to hear this, but you cannot change anyone but you. The one thing that you can do is share information about your disease and let them make of it what they will. It's amazing how much is laid at our feet by people with zero understanding of this disease.
I was lucky that, although I met my husband during a short period of remission, he saw me go downhill and wanted to marry me anyway. An absolutely invaluable experience was him accompanying me to many of doctors appts.. He was able to hear straight from the doctors what was going on, how lupus attacked the bodies.
And although I know he would like very much to be able to do the things we used to do, but we have found ways to compensate, i.e. resting before a trip, planning in advance, sleeping as much as I can before arriving at our destination. Your health is paramount and stress is not good for you. It's important that your family understand that, but again you can't make anyone change. It's up to you to take in the positive and leave out the negative.
I truly hope that you can find a balance.
hugs,
DeAnne
Annemarie said:
My story is a bit different in that I developed Sjogren's syndrome at 7, then Raynaud's, fibromyalgia, vasculitis, migraines, through my teens, then was dx'd with lupus, kidney issues, severe fatigue and brain fog. My husband and I have been married 19 years but together 21. So I knew going in that pregnancy would be difficult. I was on bed rest with all of them in the last trimester with twice weekly stress tests. I lost our daughter at 32 weeks, her heart just stopped, probably related more to the sjs antibodies than the lupus. My oldest son is now 18 and is not understanding at all about my health issues. My 16 yo son is awesome, very understanding about my limitations and my youngest son is 7 and has only known a mom who is in bed most of the day. He just crawls in with me and we read and do homework together. My husband tries to be understanding but he still wants his old wife back. The one who could keep the house clean, make dinner, go to work, and to the gym everyday. He has made me feel pretty bad about myself at times. I try to not let it bother me but I feel like a huge leach because I can't work and we're really struggling financially. I've been denied disability twice and I'm about to try again but with the help of a disability atty. I've learned to let the crap that comes from other people roll off my back. My real friends accept my limitations. The only comments that really bug me are the ones that are made when I park in disabled parking. One woman was rude enough to say to me, "that spot is for disabled people only, and you can walk just fine" I very politely replied that I was disabled, I just try hard to not look like I am. I dress neatly and try to keep my weight down etc... I really wanted to smack her and say I didn't cause my disability by overeating like you! I was born with it...lol I would never say that but boy did I ever want to. My question for all of you is how do you manage your "good" time and do what has to be done as well as what you want to do? My husband's biggest complaint is that our house is a mess. I made the choice to save my good days for my kids over housework etc... If my kids would help out more then I could do both but right now it's one or the other. I've tried to get my husband to go to counseling but he doesn't think he needs it. I know (my BA was in psychology and I had started my Masters) that he is depressed but he won't go in. I'm about ready to grind some of my antidepressants up and put them in his coffee or something...lol Sorry this is so long, it just hit a sore spot. I'd love to know how others have gotten their husband's support and understanding. He wants me to go back to work even though I can only stay on my feet for about 30 minutes before I have to lay back down. Any advice would be greatly appreciated. Annemarie
I was single mom too w/1 girl trying to keep a roof over our head. No one thought i was really sick. just lazy they said. So I kept trying to work but couldn't keep jobs. so kept trying to work. Then i decided to not work. boy did it get everyone on my back. luckily found a dr. that beleiever i was sick and started tests to see what was wrong and she told me not to worry about what others said. I was releived.!after 3 wks of test, I got results. she said i something that couldn't be cured "lupus" and I couldn't work anymore. I was happy and sad. I told my family. course they didn't believe till later. Dr. told me to appy for SS. and keep applying. finally got a date with judge and he gave me disability social security. thanks to all the people who told me to keep trying and to God who kept me from going crazy. it's been since '83 and my lupus has been relativity inactive. So hang in there all of you! there will be an end to the struggle w/naysayers. God bless you, sunshine. My daughter has grown to a wonderful God-Filled woman. and supports me al lthe time. later more..
I will never understand how people can think that you are "just lazy". Shame on them!!! All they have to do is a little research. My friends and family know that I am really sick. Everytime anyone comes over I am laying down and they accept that.
Those are good questions! Sometimes I just give it Jehovah for him to work it out! Am not going to stress over things that make my Lupus flare, but I do relate to what you are thinking…Beverly L.
I know but it drives me crazy having to slow down. Last Thursday I couldn't get up and go to work, I had over done it. Spent most of the day in bed asleep. Frustrating, but I could only blame myself for going every day and evening!
This is for you, especially, NicMic. Approximately 1% of lupus patients are in fact ANA neg, myself being one. My Rheumy, who taught at the Mayo Clinic, and UCIrvine, which specializes in lupus, in effect told me I have been her ONLY ANA neg patient. Were it not for a kidney biopsy (which at this point I would insist on for you) she would be hard pressed to diagnose lupus herself, even though many other symptoms are obviously present.
So to put it in perspective, you are very rare. Of the approx. 3-5% of the population, only 1% of that is ANA neg. I am surprised that I have actually met another ANA neg. patient on the site. The odds are very slim. I am terrible at math especially after my stroke, but you can imagine there are not many of us out there.
With you kidney's acting up, insist on a biopsy before you lose function permanently. I was within about a week from kidney failure when I found a Nephrologist that insisted on the biopsy. He saved my life.
Best of luck and hope you feel better soon,
DeAnne
NicMic said:
Hello - This is Nicole from Australia. I want to sincerely apologize if in my post I came across as negative. I was talking about past events to demonstrate how I empathize with others who experienced a similar thing.
I work very hard at being positive however I'm struggling at the moment because only last weekend I was rushed to hospital with a burst blood clot. I live in a rural area and it took an hour to get to my place. The ride to the hospital was AGONY! On top of that I had pneumonia AND only that day my kidneys stopped making urine.
I understand this might be hard to believe but because I tested ANA negative. My Rhuematologist doesn't believe I have Lupus. He diagnosed me with Fibromyalgia. I have Hashimotos and Psoriasis which is Auto Immune.
I really don't know what to do because I'm dealing with this on my own. Trying to be positive though Lol!
I really hate you are having to face this. I had a high ANA and still took a very long time to get a diagnosis. I can only imagine how difficult it can be for you. Hope they get their act together for you.
whathappensinvegas said:
This is for you, especially, NicMic. Approximately 1% of lupus patients are in fact ANA neg, myself being one. My Rheumy, who taught at the Mayo Clinic, and UCIrvine, which specializes in lupus, in effect told me I have been her ONLY ANA neg patient. Were it not for a kidney biopsy (which at this point I would insist on for you) she would be hard pressed to diagnose lupus herself, even though many other symptoms are obviously present.
So to put it in perspective, you are very rare. Of the approx. 3-5% of the population, only 1% of that is ANA neg. I am surprised that I have actually met another ANA neg. patient on the site. The odds are very slim. I am terrible at math especially after my stroke, but you can imagine there are not many of us out there.
With you kidney's acting up, insist on a biopsy before you lose function permanently. I was within about a week from kidney failure when I found a Nephrologist that insisted on the biopsy. He saved my life.
Best of luck and hope you feel better soon,
DeAnne
NicMic said:
Hello - This is Nicole from Australia. I want to sincerely apologize if in my post I came across as negative. I was talking about past events to demonstrate how I empathize with others who experienced a similar thing.
I work very hard at being positive however I'm struggling at the moment because only last weekend I was rushed to hospital with a burst blood clot. I live in a rural area and it took an hour to get to my place. The ride to the hospital was AGONY! On top of that I had pneumonia AND only that day my kidneys stopped making urine.
I understand this might be hard to believe but because I tested ANA negative. My Rhuematologist doesn't believe I have Lupus. He diagnosed me with Fibromyalgia. I have Hashimotos and Psoriasis which is Auto Immune.
I really don't know what to do because I'm dealing with this on my own. Trying to be positive though Lol!
Wow!! Your friend did this to you!! Am so sorry this happened. The doctor was wrong for what he did,you should report him. You did what you had to do, reporting this to the police. Which I can seriously say , you don't need to be or have friends like that, taking away the pain meds that you have to take! I,myself would have nothing to do with him /her. When I can't trust you I am through with that person, no matter how long we have been friends! But of course we have to choose the right people to have around us, because there are people that know we get these type of pills and they will watch our every move , and mark the time when they know we will forget and don't pay attention what we do! That's when they make their move, it really is sad!well hope that you will get something to help with the pain, and don't have people around you that don't have heart for you about your health!!...Beverly L.
NicMic said:
Hello and thank you so much Ann for your reply. Unfortunately I've just had another trip to hospital. On Saturday my urine turned dark brown. I also had severe pain in my lower abdomen. I don't really understand what's happening.
To top it off my so called friend stole my narcotic pain relief from the locked glove box of my car. I reported it to the police however when I told my Doctor he was so angry he discharged me.
Honestly I have no idea why I deserve this. My 'friend' works for disability services. She took me to the hospital in my car and picked me up. I locked the medication in my glove box but when I went to get them they were gone. Dr's have a zero tolerance for lost or stolen Narcotic pain relief and I can not take anti inflammatory's. I also have a ruptured L5.
I realise I sound like I'm looking for pity but I'm not. I just wish for once someone (eg. a DR) BELIEVE me.
Like I said earlier, there is no excuse for someone who you trusted to help you, and take something (pills)that they know help you! That would be the first and last time she would be around me-seriously!! People that don’t care about me and use me, I leave them alone(stop dealing with them ). I have no use for them , I can’t trust them regardless what they try to talk to me about!! Sorry this happened and again hope that you get something for the pain, and do what you have to do your friend!!..Beverly L.
Ann A. said:
Dear NicMic
My pain management contract also specifies that lost or stolen drugs will not be replaced. But what a dastardly thing for her to do. Please follow through on the police complaint and prosecute her to the fullest extent of the law.
I had problems with my husband stealing mine all the time, so I dealt with the pain, mostly with heating pad. Now that we are divorced I have been able to take it regularly and maintain my pain a lot better. And by the way I did hide the pills but he searched diligently, even finding them in my kotex. He knew I had them nothing would stop him from searching every nook and cranny.
Yes! People that have addiction problems think of the storage places where something would be hided from the normal place, it is like they think about it , then find the spot with a doubt. And people think did I move it somewhere and forgot where-I have 2family members like that. They will also pretend to help look for it, that is why I watch them very close when they come to visit-that is crazy!!well hope you don’t have to go through that no more…Beverly L.
I am a single mom. I was sick before I got pregnant. Went in remission during pregnancy and now have a beautiful daughter who is about to turn 3. She keeps me fighting. In fact, she’s laying next to me right now. She knows when I’m in a flare and wants to sleep next to mommy. It’s sweet.
Blondie said: My son is completing everything this month and will be getting his Eagle
Blondie said:
Being a scout leader is like a full time job, thanks for your support, very happy for your grandson. My son is a star right now working toward Eagle. I just thank God for keeping me going.
freightliner said:
Hi Blondie
I just had to mention that my son was a "den mother" and then scout master. My grandson just got his Eagle. Thanks for your help with the cub scouts. Its a lot of work. As my son says "it's one hour a week lol.
