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Life With Lupus

Relationships


#21

I agree Cassie, surround yourself with people who care about you. I have been working on that for over a year now. Out with the old and in with the new...

cassie40 said:

My advice is to be honest- up front- speak from your heart-don't hide anything. He must love you - Lupus and all. If you pretend - then you will have to keep that up though out your entire marraige. Be sure you both know if you can do it TOGETHER- before walking down the isle. You do no favor to him or yourself if you don't acknolwlege that Lupus will make your life a little more challenging.

I didn't get that chance- my Lupus came years into my marriage and my husband does not love the "Lupus me". He knew me as the strong- outgoing- never say no to any challenge- girl I used to be. The old me and the new me do not come together in his mind. He thinks I just need to be my old self. He will not accept the fact that drugs can never restore me to my formor glory. We may not make it and it totally breaks my heart.

Please, be true to yourself. Be sure to surround yourself with people who will love you always. In sickness and in health.

Cassie


#22

After my 2nd trip to my Rheumatologist, I came home and read the pamphlet he gave me and cried. My husband came home and took me to the couch, and held me while he read it. The first thing he said to me was, "I'll take care of you." I cried even more. My first visit I was dianosed as RA, and then I come home with this bomshell. My husband asked to go with me to the next visit. My husband doesn't like to see me in pain. Even when I think I'm doing ok, he'll ask me to rest cause he sees me limping.


#23

My husband left me prior to my diagnosis, I feel it was mostly because he felt like I was neglecting his needs, which at the time we were going through incredible strife and he fell on hard times. I stuck it out, but when I needed him he just couldn’t see outside himself to be there for me. We have been separated for almost 2 years. He has been trying to come back, but I realize I don’t need anyone who can’t be there for me in my time of need. I’m dating someone, and he doesn’t completely understand Lupus. He is a neat freak, and hates a messy home, he doesn’t realize the kind of pain I’m going through, and when I tell him, I know he still won’t understand the amount of energy it takes to carry out simple tasks. I guess it’s hard for him to accept, because on the outside, I appear so normal. The only person he knew to have Lupus, was so sick that she died. I don’t think he wants to relate that to me, because he knows the seriousness of Lupus.I guess if we ride it out, I’ll see if he truly gets it. One day he said to me "I don’t know how you do it. Everyday in pain, I can’t imagine what that’s like. "He told me I was very strong. I’m always upfront with anyone that I maybe interested in about Lupus. If they can’t be supportive, I’d rather not have them around. I believe that there is someone for everyone, no matter what. I’m hoping that the guy I’m with is the one, because I care for him, but if not I will accept that and move on.


#24

Hi Risa,

I am sorry about your seperation with your hubby and whether it be a man or woman in a relationship/marriage it's terrible when your other half take ill and the quickest way out is by walking out.

Do really hope your relationship with this man corrects itself and you stay together firm but i really can't understand why he is like he is when he had a friend with Lupus and you have it...he must know how it affects your body besides being physcially drained....you need to state to him about his friend an i would ask what do you know about it and if you don't get the proper answer you want...then you know he was hurt by his friend who had Lupus but never really went into the facts of how it affected her....if you don't know is friend, then you never really know what her saw of her suffering.

I mean i have OCD and my hubby's life at times is terrible, he's not really untidy but more easy going but odd things he did have been stopped and he's altered in his ways for me, knowing alot of things are to much.

Well i believe like yourself there is someone for everyone but when that happens nobody knows, i really hope he can learn to understand how you are more and if not like you say move on.


#25

I know my realtionship has suffered more because of it. Actually, my diagnosis is what has made things change for better and worse. I got diagnosed last summer, and my husband said, "well there's medicine for that." End of topic. And I was to just go on with my life as if nothing was wrong. But yet his knee hurts and the world will end. My diagnosis with Lupus has actually made me realize that life is really short, and sitting in the house miserable is not how I want to end up. SO now Im getting up, taking care of my kids, as if he wasnt there. Doing what needs to be done, hanging out with friends more. And work and go to school. He can stay along for the ride and participate or get off the bus. I would say at this point, express to him how you feel, emotionally and physically. And do your thing!!! You are tough....


#26

Hello Cannabearrx,

I hope your keeping fine the best you can? and did member's advice help in anyway possible with you and your fiance...it would be lovely to hear off you when you possibly can as you've not been on the site since you added your thread.

Love to you Terri xxx


#27

5 yrs 3 dogs and 2 cars and 1 broken heart it is over folks I should have reached out to you guys a lot sooner. I’m hoping he just really needed a vacation from me. Or he was the last frog and my prince is right around the corner


#28

I think they think you can’t possibly be sick that much so they think we get better when we stop listing our symptoms. Maybe every 2 yrs we oughtta give them a refresher course, "it didn’t go away it is still around,so don’t get too comfortable with things the way they are now.




Tez_20 said:

Hi Risa,

I am sorry about your seperation with your hubby and whether it be a man or woman in a relationship/marriage it’s terrible when your other half take ill and the quickest way out is by walking out.

Do really hope your relationship with this man corrects itself and you stay together firm but i really can’t understand why he is like he is when he had a friend with Lupus and you have it…he must know how it affects your body besides being physcially drained…you need to state to him about his friend an i would ask what do you know about it and if you don’t get the proper answer you want…then you know he was hurt by his friend who had Lupus but never really went into the facts of how it affected her…if you don’t know is friend, then you never really know what her saw of her suffering.

I mean i have OCD and my hubby’s life at times is terrible, he’s not really untidy but more easy going but odd things he did have been stopped and he’s altered in his ways for me, knowing alot of things are to much.

Well i believe like yourself there is someone for everyone but when that happens nobody knows, i really hope he can learn to understand how you are more and if not like you say move on.


#29

Oh i am sorry mate it's terrible after 5yrs, fingerscrossed he just needs a break...if you never get back together never look on the black side as none of we know what's around the corner but thankfully your with us now...so we can show true love and support.

A large hug your way Terri xxx

Cannabearrx said:

5 yrs 3 dogs and 2 cars and 1 broken heart it is over folks I should have reached out to you guys a lot sooner. I'm hoping he just really needed a vacation from me. Or he was the last frog and my prince is right around the corner

#30

Cannabearrx

I'm really sorry, I understand how you feel, I've been through this with my husband when we were still dating. My kids were too much for him at times. Many times, he walked away and I thought that's it, its over. Concentrate on 1 day at a time, that's all you can do. You can't change the past and the future hasn't come yet, take care of yourself today. Have you heard if you love something set it free: if it comes back to you it was meant to be, if it doesn't it was never really yours? I'll pray for you, and I'm here for you Trisha


#31

Even though I broke up with my man I will still keep trying to find someone who can stand by my side. Don’t let lupus run your life



Tiffany89 said:

I’m sure it’s difficult being in a relationship and dealing with lupus! That is what I’m scared about. I’m 23 & single. I don’t even wanna get involved with anyone, because I feel like all I would do is burden them. And thats the last thing I wanna do. It’s hard enough with family! If u have any tips please let me know. And I wish u the best of luck!

#32

Thanks that is exactly what I am trying to remind myself but I think I need a break from my lupus too




Trisha said:

Cannabearrx

I’m really sorry, I understand how you feel, I’ve been through this with my husband when we were still dating. My kids were too much for him at times. Many times, he walked away and I thought that’s it, its over. Concentrate on 1 day at a time, that’s all you can do. You can’t change the past and the future hasn’t come yet, take care of yourself today. Have you heard if you love something set it free: if it comes back to you it was meant to be, if it doesn’t it was never really yours? I’ll pray for you, and I’m here for you Trisha


#33

Cannabeera

That is a very difficult adjustment for any relationship to make. And if there were any small problems (what relationship doesnt) a chronic illness tends to magnify and intensify them. All the suggestions to educate him on this illness and how it effects your life are right on absolutely. I would just add that maybe a little couples counseling might help too. Hope that helps God Bless


#34

He is one of those egos that prevents him from going to groups or therapy. He is usually pretty good about coming to grips with most of life’s issues, which i thoughy was pretty remarkable. But here is a little synopsis.

2 years ago I quit working in my family business that has been alive since 1980 in abq &is actually a break off of what petco started from. we are extremely tied to our community busy and very serious about healthy pets and natural solutions. I am pretty damn good at computers, teaching myself new skills writh no help, I have been trying to finish nursing school for the past 10 yrs, have become a mini guru or crossing guard to the world of alternative therapies for us and pets, have taken ethics courses, statistics, and literally every course my community college has to offer in psychology, i have amazimg people skills, ive been a student/ scolar of philosophy, maybe I’m a savant lol…i mean my interests are my veiwfinder to the world and it has been this way for all 30 yrs of my life. that is until 2 yrs ago my demands at work were to great and my jack-of-tradededness tripping me every minute of my excruciating symptomomatic days, and my yearning for my own path to finally be my only goal, (insert spoon theory here, YouTube) my family losing their patience with my attendance performance and stuffing down some childhood abuse and control( not a bad kid,just the first born). I needed time off to get me right so I quit. 3-4 months into it I started with lmphopthy(?) and trouble swallowing (6 months) then my pooper stopped working (got on the laxative and pain pill train, 1 yr and 9 months). no answers just a Grimm prognosis of taking a double dosage of miralax daily to give myself diarrhea ). then the farting stopped too. spent my life crying while he was away at work, (7am-8pm, 4 days a week). Suffice it to say the house fell apart. not able to shower but 3-4 times a week, having sex only 2x every 2 wksr. I don’t have friends because they all disappeared about 2 yrs into the lupus diagnosis. My family is very busy and now evem more so? Now there are only 3 of them left, very busy and a little sore about leaving yet understandin and not calling very frequntly. Ifelt like i was losing myself, like i was dying all over agian ( i was diagnosed on the verge of death because my initial appointment was 1 yr out).My fiancé is very humorous can talk to anyone and connect, he is also macho,a man’s man likes guns, grew up in Kansas, moved to abq to help his mother start her business 10 yrs ago (I like to call her the wicked bitch of the Midwest good one! Lol) he has self motivational issues, has been overweight his whole life, parents were divorced when he was 5; dated for a bit again, 9 months later he has a brother. He is such a baby when he is sick and a little mean too. When he is upset he needs to pull away and think then he is back & no q’s are to be asked (not dealing with his own child hood issues?).so I can’t be out & about much and he hates to be in bed or idle even. I tried to keep my rolling and moaning, I probably look like a schizophrenic, and I don’t show that to anybody.

I’m going to split this up into a few posts so I don’t loose valuable work.


#35

I forgot to mention he was the one who even presented the possibility that cannabis would have a therapuetic advantage over “true narcotics”. And all of you know out there the trap that these barbituates and narcotics do to us when we have to be on them practically every day and you know how imprtant yet difficult it is to bring youself to take them, but those hideous pains and the way the pain affects your personality, its flip’n difficult.


#36

We recently became a medical state. He became my care giver and my grower and he is amazing at it it is the smoothest stuff and most medically advantageously piece of smoke able healing and it helped me get well. I know some will think this is blasphemous ( republicans) but I see it as pure love, no other medicine Has given me the ability to be myself and continue trying to give my “spoons away” to every one cuz that is what I am made of emotion and empathy and charcter. But I used my " lupper-powers" in a not so graceful way. But I am hoping that he and I were good enough people that this universe will ope up and give him back to me!


#37

Hi Cannabearrx,

As other's have said, if he loves you and you him, it is definitely worth the effort of trying to help him to understand more about the illness. Also, for you to understand how he feels as your carer.

My husband and I have been married for 10 years now and while he is an amazing husband and father to our kids, he is kinda bored with the whole lupus topic now. Don't get me wrong, he is supportive and when I am really ill he helps more, but generally I don't feel like he truly understands. I think this could be because I don't fully understand either! lol! Every day I hear that something else I have been feeling could be related to this illness! lol!

I think that understanding on both sides is needed along with patience and honesty. If I work it out and find the magic potion I'll let you know hun. xxxxx


#38

Hi Cannabearrx,

I definitely agree with "Lisa" about getting him to understand more.

My hubby as stood by me with all issues nd ailments going and when i was diagnosed by my dermo...ste was'nt with me or a couple of times after on appointments to him and when i tried explaining he kept saying you'll be ok...i felt totally lost so when i went to the rheumo i asked him to come along and after that visit besides asking questions himself now...he knows what i'm suffer besides reading up on it, he's took alot on his hands besides which Lupus as stopped me doing besides knowing what a few of the members are going through on here as he reads the discussions if i point issues out....but finding LWL and all these lovely members topped the cake for me.

I don't feel alone anymore where Lupus is cncerned. :) xxxx


#39

A post was split to a new topic: Medical Cannibis