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Thread: having to stay home alot- venting and long sorry

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    Angry having to stay home alot- venting and long sorry

    I want to go somewhere. Ok now that I got that out of my system.
    For over a month now I have been stuck at home, One due to the heat hear in Carolina, I had a bad flare about a month ago and had to go to the hospital. Secondly the dr does not want me out much cause of all the meds that I am on. My husband agrees with me staying home and yes I understand and agree to a point. the most I have went out was to and from dr appointments and to and from the grocery store a couple of times and once to my mom's house but it was an emergancy. My husband and I have spent every weekend together for the last 16 years, until now. he works for his self and durning the week he goes off to his job like most, but on the weekends we got all our friends together and we worked. Now I am home none of our friends really know what's going on, we did tell one but decided not tell the rest at this point. At first when I started to stay home, I was cool with it but now I am not sure.

    Every Saturday we always got up at 3 am and left to go out of town as I call it, well it's about an hour from where I live, This morning when my husband got up I was awake and all I could say was wish I could go. I know he felt bad leaving me at home, but it's driving me nuts. We had a decussion about how to deal with this as I told him, I felt that he was out leading his life and I was getting left out, He's one to come home and tell me everything that went on with his day and I hear all the things that he and our friends did together that day and realize that I am missing out on it because of this stupid lupus that I wish someone has packed up there... nevermind that last comment. Anyway I doin't want my husband to feel like he can't tell me what he did for fear that it will up set me. but dang this is crazy. Hubby keeps saying when the meds are changed and the weather is cooler he will take me somewhere. Which is great but that don't change the fact that I am stuck here now.

    On the days that I feeling some what better, I clean house and take care of my 3 dogs and 2 cats and 1 turtle, and my grown son(who still lives with us) but you can only do so much of that. I think I have also watched every movie known to man kind right now, and have checked out every lupus website there is durning this time.

    So how does a person cope with something like this, a really good friend of mine, keeps calling and checking on me and asking if I am getting depressed from having to stay home, no I don't think I am I think I am more or less mad with the situation at hand. Angery is what I keep telling everyone. My friend she had a stroke about 2 months ago and when she got out of the hospital she couldn't drive for a few days but it was only a few days and yesw if she needed to go somewhere someone took her. She makes the comment that she understood how I felt, As I explained to her "she could still go somewhere, she just couldn't drive" not the same thing at all. If I go out side and stay for more than 10 minutes in this sun and heat I swell up so bad that I can't move at all.

    Now that I am dignosed with lupus (which I hate that word right now) I feel so much of less a person and feel that life is going on with out me. My husband is trating me like a baby and when he goes out of town he feels the need to bring me stuff home. So every Saturday he returns with lots of goodies as if it were christmas or something. I keep telling him he doesn't have to do this, but he insist, even one of his friends that knows what is going on, has started helping him bring me goodies. what do I do about it or do I just let my husband and his friend keep bring me stuff every weekend. I feel it's wrong.

    I just want to get out of my house, I want to run away for awhile and then come back and so ok now I can handle this and take on the world but that's not a good idea either.

    Maybe I am just being a big baby about this...
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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    Lea,

    I don't think you are being a baby, not at all. Having lupus sucks and I hate it too!!! I live in Georgia, so I understand what you mean by this heat, it's been murder. I can't be in the outdoors for more than a few minutes without feeling sick. I do leave the house though to go to the store etc., but not for any fun outdoor activities. There are days when all I feel like doing is screaming and using some unacceptable language,( but I don't.) Refrain, refrain!!!!!

    Summer will be over before long and maybe we will be lucky enough to catch a break and enjoy the weather again. Try,(I know it's not easy) but try to stay positive.

    And shoot if my husband went out on saturday and came back with goodies I'd jump for joy. lol

    Take care and((((( HUGS))))).
    Sue

    'Friends are like stars.....You don't always see them, but you know they are there.'

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    Hi Lea, I can't tell you I know how it feels to be homebound, except when I am sick for weeks at a time. I go about nuts when it happens. The way I coped, was to try to be productive in the moment. I am a women of faith and I try to see how I can bloom where planted. I write letters to encourage folks who are really sick. I make plans for when I am feeling better. I write every detail down for when I can get out again. I get lost in books as I have not had a TV for 6 yrs. I learn new things like knitting. I do pretty well with finding ways to cope, if I am not in extreme pain.

    As for your husband, he feels powerless to help you. This is the only thing he can do, so I encourage you to let him do this. Gift giving is a love language for many, so let him love you the best way he can right now.

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    hi leaann,
    Unfortunately, I know full well how you feel. I have BAD reactions to the heat and strong sunshine and it's been HORRIBLE in Texas this summer. So, I've been stuck inside for months and hate, hate, hate it. I can't wait until the cool weather comes.

    I wish I knew what to suggest. I'm just taking it a day at a time. That seems to be the only way to handle it without losing my mind, lol. here's hoping for an early cold snap!!!!

    Julia

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    thanks everyone,
    I think my problem is I have always been able to go and come as I please and I know feel like lupus is my parent and I am the child and it is tell me I am grounded and can't go anywhere. I do how ever have company, My son is here most of the time, but he goes back to college next week.

    I don't see how anyone can do this. I mean how are you not suspose to get depressed about this. It gets very up setting at times and I don't feel getting depressed at this time would be a good thing. (well it's never a good thing) but you understand what I am saying. What gripes me is the fact that in 1998 I lost my 6 year old son and after his death, I spent 8 years in severe depression so much so that I almost lost my whole family becauce of it. So for the last 5 years I was finally getting my life back together, when all this lupus stuff came up. So if my family thinks I getting depressed any way they tend to freak out. I have come a very long way and it seems like no matter what I do there is something knocking me back down. I guess over time I will get use to it.

    As far as my husband I understand that this has to be hard on him, he is brave and he doesn't let alot of things show when it comes to me, because I have put him through so much. When we got married, we have big plans and only 5 months into our marriage my son died, then when I come back to life from that my mom was dignosed with kidney cancer and now is in stage 4 of kidney failure, and all along I am fighting this lupus things. It has to be very upsetting for him. I some times feel that he didn't ask for all this. His life should have been better than this. So many of our friends don't understand our relationship and act as if he would be better off without me, because of all the issues. My husband says that we have made it better than most of have gone through what we have and he keeps saying that we will come out better and closer together than we were before the lupus. My husband is alot like my dad, when my mom got sick my dad would go out and buy her stuff to make her feel better, when they dignosed her with cancer, my dad bought her a new car, would giver her diamond rings and stuff. She was just in the hospital 2 weeks ago and we were picking at my mom asking her what dad was going to do this time. All sitting around wondering what she was going to get and telling her that she was just going to the hospital to see what she would get, but mom is like me, she didn't wont anything, she just wanted my dad to be happy and not worry about her. My dad ask me what he could buy or do for my mom and I told him she wanted him to buy me a new car. He thought that it was funny and said I see where you are going with this. I told him it would make her happy if he made me happy. Heck I figured I would give it shot, it just didn't work. I guess when yoou don't know what to do for someone that you love, you try to find things that help and make them happy.

    I guess I can look at it as I am lucky to have a husband that does the things he does for me, but I still feel bad for him, he has to take on all the responsebility for everything now more than what he use to and because of it I worrie that it will get him down and he want tell me. He has his own medical problems and sometimes he refuses to take care of himself because of taking care of me. I feel he can only stay strong for so long and then he will break. He's the type to put up a good front and hold everybody together when needed but one person can only take so much.

    I guess that once the shock of them telling me I have lupus wears off, things will go back to some kind of normal but until then we live with that we have been delt with and go on.

    thanks everyone for listening.
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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    Wow Lea what terrible history you have. I'm so sorry for all your sorrow. Yes there is a grief period when diagnosed with lupus and it is similar to the grief of a loss of anything or anyone. It has stages we must go through. You will discover the new norm for you. I was diagnosed 5 years ago. I lost a farm and my world was turned up side down. But this weekend I went backpacking. It gives me hope for other things. I thought my days of adventure and fun were over. I have to work around this stinking disease, and this angers me, but I fight like cazy to keep it from having me! Bless you on your journey dear. May the next years be filled with huge blessings.

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    Hi there. I do hope today finds you feeling better.

    I live just outside of Houston. we broke a record yesterday. We have now hit 100 degrees 33 times this year and 22 of those were consecutive. I do understand heat. I have learned the hard way how my body reacts to it. I . I am not sure what temp you mean when you say hot. I have found if I am dealing with the 80s or low 90s I can wear protective clothing (hat included) and use sunscreen I can go out for awhile. The UV protective clothing can be found pretty cheap and it lets me go out for short bits of time. The other thing that my daughter and I have done is live like vampires. We hang around the house during the day and head out as the sun goes down. We go out to eat or a little shopping. I can't do much due to some of my issues but it allows me to get out and feel a little more normal.

    Whole you didn't say what your hubby and your friends did during their weekly meeting but could it be done at your house once a month? How about everyone getting together there for darts, cards, domino's etc? The men could BBQ and the ladies could get the rest of the meal together inside. Just a thought

    I would also suggest that you talk to your doctor and let him know about the depression. He may be able to help with you with that
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    We live just outside Augusta Georgia, in Carolina the temps have been in the triple digits. The humidity is what kills us here. Yesterday I I had the bright idea to get up early and try to do something. Went in the yard while hubby was doing some yard work, after about 15 minutes I couldn't take it. My hands were swelling so bad couldn't get my wedding ring off. So I went back in and cooled off for a bit and tried to get over it, but yet another idea came up, hubby was going to check on some of his customers (He manages several rental properties in the area and does construction work) so since he was not actually doing a job I thought I would try to go just to get out of the house. He said if it got bad on me he would drop me off at his moms house for awhile until he got finished. We live about 35 miles from the town that he works in and his mom lives in that town as well.

    Well I found out my dad and my brother were in town doing a job (landscaping business) so we dropped by to see them, Dad and brother live in Georgia about 50 miles from us don't get to see them much. Any way the whole time I was there I could tell I was starting to swell up again, My brother does not know what is wrong with me, because he is mentally challanged. So had to make up excuses and leave. so hubby decided to head over to his mom's. Some freinds dropped by which was nice. Was able to actually sit my mother in law down and explain the lupus to her since we had not told her at this point. She was alot more understanding than I thought.

    Even with all the sun screen and everything I did even wearing my big fancy hat. I still had alot of issues. I do feel that I am going to have to do the vampire thing, which my son thinks is cool (he loves vampies) lol I think it is what is going to be easiest on me. The hubby has been really great about all this and he gets so worried and upset when I go out and come back home sick and have problems.

    ***Oh the weekend thing that we do is go to flea market every saturday, We get together with several of our friends we all bring stuff and set up. There is usually about 15 of us that get together and go, it is about an hour away from here. It starts about 4 am in the morning and is usually over by 12 pm the bad part is that it is in a huge open field in the middle of no where. The sun is shining right on top of you there. The last time I went was about a month ago and had to go to the emergancy room after it was over with. So hubby and dr out there foot down and told me I waws going back until the weather cooled off.I agree it was to much on me. I just really miss is and all the friends and stuff that goes on. My son is going back to collage this week and I will be left at the house with no adult company but I go to the dr in about a week and think I will talk to him about this.

    Thanks everyone
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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