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Thread: New to Forum, Not to Lupus

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    Default New to Forum, Not to Lupus

    Hi,
    I am new to this support group. I have tried to handle my Lupus and other ailments by myself. Well, I can't do it anymore and need to talk to other people who are going through what I am. I have had Lupus for about 6 years ago. It started out as Fibromyalgia. I was just recently diagnosed with Hypothyroidism. I have had plenty of organ complications and surgeries due to the Lupus as well. I guess I need some support. I was divorced in 2003 and have been living with my boyfriend since then. He is always telling me how lazy I am. He yells at me for not getting everything done in the house. He says he is tired of me complaining about my Lupus and how sick I feel. I try to tell him that stress makes it worse, but he doesn't listen. I am unable to work and it is so very hard to take care of my children. I try to do as much as I can on the days I feel somewhat good, but I really haven't had a reprieve from this flare in over 2 years. I am so very exhausted and tired. It takes all of my energy to just get up and get the kids to school in the morning. He gets mad when I can't remember things. Please tell me, is he right?? I begin to question myself. I don't know if I am just going crazy sometimes.

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    Hi Kotybear,

    We will listen. Sorry you are having such a rough time. Well, you came to the right place. I am new too.

    It is nice to be able to have conversations, messages with others who have Lupus, so we don't feel like we are going crazy. You're not!

    If you need face to face conversation too, perhaps you could find a local support group in your area. Have you checked?

    No, your BF isn't right. It is just hard for some to understand, when they don't see a band-aid, a broken leg....they don't think we are sick. Some equate it to being lazy, like he does. But you and I know you aren't.

    I am sorry that you are not able to to nurture yourself without guilt. Has your BF read anything about Lupus? Has he been with you to any of your doctor's appointments? Are you on any prescriptions to help reduce your symptoms?

    I am sorry he isn't sensitive to your needs. I am, we all are here for you so you don't have to go it alone. Keep your chin up, girl.


    Hugs...squeezeeeeeee.
    Keep well,
    Oluwa

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    Welcome Koytbear! You are not alone! Hope we can help you hang in there when the going gets tough.

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    Default Thank goodness I'm not crazy

    Thank you for your replies. My rheumotologist has tried so many different meds and treatments. Right now, I am taking Plaquenil, Cymbalta, Trazdone, Armour thyroid, Estradiol, and pain meds. I had to have a complete hysterectomy in 2002. I have had my gallbladder removed as well as my appendix. I had a pulmonary embolism last year and continue to have problems with chest pain, fast heartbeat, murmur etc. I also have asthma and thyroid issues and IBS
    My BF has not been to any doctors appt. with me. He doesn't even come to the hospital when I need to go. He says he has read about Lupus and it is not all that bad and that dwelling on it everyday is stupid and I should stop complaining. I feel so alone. I don't know what to say to him anymore. He is mad at me all of the time because I can't clean the house every single day. My house really isn't that dirty. It is really pretty neat and clean with the occasional dust and sweeping that needs to be done.
    If there are any spouses out there that understand what their spouse or partner is going through, any advice?
    The closest support group to me is in Wash., DC. I live in Pasadena MD

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    Yes, my spouse understands and has made an effort to educate himself. Many spouses may not understand as well as we do, but do not rise to the level of cruelty that your partner is showing you. I am concerned about his blaming you for your disease and especially not supporting you, even when you are in the hospital. This is taking advantage of the natural guilt you feel for not being your healthiest. Even though you are sick, you are still contributing to this world and your family. Everyone has a purpose and gifts to give others, ones that go far beyond cleaning the house and feeling well all the time.

    We cannot expect everyone else to always understand what we are going through, but we can expect respect and kindness. If you would like to talk more, please feel free to PM me, if you want. I actually work with domestic violence survivors and the things you have described are concerning to me. You deserve better.

    Good luck with everything and please know that I am thinking of you. We are hapy to have you here. I hope you find the support here as helpful as I have.

    Take Care,
    Missy

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    Hi Kotybear,

    How are you this day?

    You sure have been through alot. Gets frustrating to be through so much and never seem to get well, eh? Hopefully soon your doctor will find the right prescription combo for you.

    How is your diet? Types of foods? Have you researched into that aspect of foods association with Lupus. Currently, I am consuming all anti-inflammatory foods. Ground flax-seed, salmon, no preservatives, no sugar or subsitutes, berries, watercress and etc.....and Exercising lightly. My doctor said to work through the pain a bit, to increase the strength of skeletal muscles to support my joints. Do you walk? That will help reduce the stress in the home. Take easy strides. I know it is hard to get that momentum to do it, but in the end you will feel more alive.

    I haven't been doing the food regime very long, but I do notice I don't feel so over stimulated, for the lack of a better word. I guess it could be described as feeling tight and swollen in the inside. Inflamed. Bloated.

    I read in another thread you were asking about fatigue. For me, I find stretching brings more oxygen to the blood which gives me a charge of energy. There are 10 minute routines on DVD. Yoga, Pilates or just plain stretch from head to toe. Meditate. Deep breaths and slowly exhale. Eat well-balanced meals. Avoid sugar and subsitutes. Splenda is fine. Avoid stress. Take naps. Exercise and say a prayer.

    Hey, how long have you been on Plaquenil? Takes awhile to work.

    Since you have two whammies. Lupus and "menopause", have you tried to treat symptoms for menopause besides drug therapy? Maybe contact a womens clinic. Universities also have departments that specialize in womens care. Maybe bring a list of all your medication to your doctor and ask to have them re-evaluate for any drug interactions

    Trazodone is sedating. Have you considered another therapy. I am assuming it is for depression.

    Have you read the SLE symptom topic? You just maybe able to find a tip, idea, regime to help reduce or eliminate some of your symptoms. For me, very warm showers help with the joints aches....

    There is a topic on this board for friends and family of persons with Lupus. Have you took a look-n-see there. I am new to the board also, so I haven't made an opportunity to look.

    Is there a university near you? I do know some universities have groups, studys and etc in there medical department. Check it out.

    Perhaps say no more to you BF in regards to, just do the best you can for you, your children and if there is energy, the house. How old are your children? Do they help with the chores? Never too young to learn.

    My relationship with my husband and Lupus, is different than yours. I didn't tell him enough. Disguised my pain, drudged through with a fake smile. I felt guilty by my own thoughts. But finally I laid it all out, he never realized. Now we are in this together. I am sorry you don't have the support that you would like. Sometimes we have to find it in another.

    Be good to you, your spirit...
    Keep well,
    Oluwa

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    Default answers

    I was diagnosed with SLE about 6 years ago, though I knew I had it for much longer. It does not run in my family in any part. I also have Hypothyroidism, IBD, Asthma, and the whole surgically induced menopause. I take the Trazadone because I don't sleep well at night. I can sleep for maybe 2 or 3 hours at a time. I eat healthy for the most part and have a membership to a gym which I try to go to 2ce a week. I did not go this past week because I just feel sick to my stomach and dizzy. I have been on the plaquenil now for 2yrs.
    My children are 9 and 12yrs. I am also going back to court for modification of custody. I am trying to get disability and have been denied once. I now have a lawyer.
    How does any of you deal with people calling you lazy or you can't possibly be sick this much. None of my family, children, and some friends just don't understand my illness no matter how much I try to educate them. It's like," ok you have Lupus and you're sick, when are you going to be done with it because I am bored". My BF just now got done yelling at me for not cleaning out the refridgerator, but I got 4 loads of laundry done (it took all my strength). I don't think he used the F word no less than 10x's along with lazy and I can't stand living like this. Where do I go from there? What do I say? I don't have anywhere to go. None of my family is willing to help me. I went through all of that when I was going through my divorce and needed a place to stay with the kids. No one would help.
    Thank you all for the caring words and kind messages
    Stacy

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    Hi Stacy,

    I am in agreement with Missy. Your situation is concerning. It seems he is very verbally abusive. Physically? Doesn't sound like a pleasant environment to be in, for yourself and with children.

    Are you on DSHS? Do they have section 8 housing in your area? Friends that can help you out?

    It must not be a great feeling, feeling like you have to stay or nowhere to go....I know it sounds dreary awful, but do they have shelters for women or homeless shelters in your area. It is a step out of where you are at if you need to go.

    Sorry Stacy that you are going through this and illnesses too. You deserve better. Not just because you are ill, but because you are human being. I hope you think so too.

    I haven't been called lazy, nor do I think anyone would. If they had, I don't think I would tolerate it. Though I have considered myself that way for being tired and fatigued before I was diagnosed.

    Hope tomorrow is better.

    Keep well,
    Oluwa

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    Hi Kotybear!

    Welcome to the Forum! I'm really glad that you found us!

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    I am SO sorry to hear that you are having problems with your boyfriend :cry: and I agree with Missy and Oluwa that your situation is concerning. Have you spoken to anyone about his verbal abuse?

    Is there no-one nearby that could help you around the house and help to take care of your two children? Neighbours, family, friends, etc.?

    Please just know that you are in my prayers...

    You are NOT lazy! You have a chronic auto-immune disease and one of the most debilitating symptoms of Lupus is EXTREME fatigue.

    Keep well and God bless you!

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    Dear Kotybear,

    I had a boyfriend once that stressed me like you describe. It made my lupus worse, only I didn't know it until I left him. I am now married to the most understanding and supportive man. He never questions me and takes the kids out on the weekends to help me rest. You deserve better. One clue that my husband was a nice guy early on was that he treated his mom and his sisters really nicely. I know you think you could never meet someone else. I thought so too, but I met my husband just 3 months after moving out. Good luck to you.

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