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Thread: New member, not new to Lupus

  1. #11
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    Hi Susan,

    Arlington,huh.I guess if you still lived here then we would be pretty close. I live just north of the HEB area in Colleyville which is next door to Grapevine. The mall that I broke my foot in was North East. I lived in Irving for 18 years and then we moved out here. It sounds like you have been out of here for a while. Slower pace? Either that or it is really rushed there.

    I, also, have dark rings around my eyes. I was wondering if this was sinusitis but was unaware that the lupus could make it chronic. that would explain it as I have been off the plaquenil for 4 days and the ringing has not let up. I will get in touch with an ENT next week.

    I will tell Tony about the emergency medical leave. Is it the same in all states, I wonder? I guess that we will have to find out.

    I quite agree that it has been nice to "talk" with you. So are you a native Texan? I am. My sister an mom have moved back to my birthplace of Chorpus Christi. My sister lives right on the beach. I wish that I coul enjoy that..Oh well..

    Have a great Saturday,

    Karen

  2. #12
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    Karen,
    I have a friend who lives almost next door to you! She works in Fort Worth, but goes north for home every night. She came to visit me up here once in the 5 years I've been here, and I have been back there a couple of times.
    No, I'm not a native, although, as I mentioned before, Texas is the place I have lived for the longest. My "home" is Mississippi (where my parents and most of my family are), but I have lived all over, due to the military.
    Know that mall well, from going shopping with Rose (my friend from North Fort Worth).
    Your husband is Tony? So is mine - hahaha. Yes, I think the Family Medical Leave is the same in all states, because it is a federal thing. Work places aren't anxious to tell you about it, because they know a properly executed form ties their hands regarding time off to help you. Some places put a lot of pressure on (about keeping your job) regarding time off - this may be true in his case. Well, this would secure his position, because they could be prosecuted for firing him when taking time off to help you, while that is in place. Hope you are able to work it out.
    I don't know if the Lupus "caused" the sinusitis to be chronic, but we are far more susceptable to any sort of inflammation due to our disease.
    It is so cool to talk with someone going through a lot of the same things that I am. I have suffered (diagnosed, formally) for 4 years, and I have yet to meet any other Lupus sufferers, except quick exposures in the Rheumy's office.
    Your icon is a puppy and cat - do you have any? I have one of each. Love 'em both! They are so sensitive to my illness. They cuddle me extra when I am suffering.

    Susan

  3. #13
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    Hi Susan,

    I am so sorry to hear that you are in pain today. I am too. I woke up exhausted. I guess thats what happens when you go off the plaquenil.

    Yes I have one cat and two outside dogs. My cat's name is gato which means cat in spanish. Actually, his name started out to be Don Gato after a song that my youngest Joshua would sing in choir. I actually remember singing that song when I was in school. But anyway his name has been shortened to Gato. Some of the other kids call him ragmop which was the other idea for a name. teehee.

    I do know someone with Lupus, but we havesort of lost contact. We grew up together. She was not diagnosed until she was around 25, but I do remember that she had a problem with nosebleeds as a child. When I was going through the tests I did get in touch with her. She is a nurse and has walked the same road. A few days before Christmas I was real down she called and it was such a comfort. but we do walk in different circles now. Most of the times I would feel so alone if it were not for this forum. In a way it is a lifeline and the people are so helpful.

    I wonder if we do the emergency medical leave if Tony's employer might find something else to fire him over? That is the only hang up. Your husband doesn't worry about that?

    There are times when I feel guilty for my husband having to do so much. He is great, but there are sometimes that I think he is wishing to have me back.
    Sorry, but I am down today. Saturday and I am having a hard time getting up and doing anything.

    Well I do hope that your pain subsides enough for you to have a nice day

    Karen

  4. #14
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    Karen,
    Yes, sometimes I worry Tony will get fired over some other issue, that is not of any consequence, just used to get rid of him because of time off, but we try really hard not to use it, unless I can't get by any other way, and it works out to be only about 5, maybe 6 times a year. Since he uses up his vacation time to do this, he is not really taking any more time than the others, and he is always available to work over time, when I am able to be without him a little extra (and the extra money is nice, too). I guess you just gotta have faith that the Lord will provide another answer, if the job chooses to let him go. So far, this has not been tested for us.
    Are you feeling any better today? I wanted to stay warm and comfortable in bed this morning, but I have felt so down lately, that I pushed myself to get up and go to church. Just getting dressed, doing something with my hair and putting on makeup exhausted me! But my sweet husband takes me around in my wheelchair, which makes it a bit easier for me to get out and about. And, our service emphasized the importance of "letting our light shine", so I know I needed to be there today I hope you are feeling the warm thoughts and prayers coming to you through this forum - I see some from you, too!
    Hope this is a better day and week for you.

    Susan

  5. #15
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    Hey Susan,

    How are you, today.

    Say, what are the natural remedies that you do for your sinus' I take so much medicine that I really need to do something for these sinus' as natural as possible.

    My husband said that he is going to look into the emergency medical leave. He said that he had heard of it and has used it in the past. I didn't know. I think that at his work there is so many days per year that is allowed. I am not sure.

    I haven't been to church in a few weeks. I agree that it is best to go. We are at a new church and I am not in the mood to get to know anyone. I look awful and I miss my old church. Tony says that I need to meet some of the women. I know some of them and they know about the lupus and I don't even get a call from one of them. I wish that I had some friends out here where I live. My mom moved to Corpus Christi and none of my relatives live near anymore. There are some times that I feel soooooooooooo alone. Now is one of them. I do try to keep upbeat but not right now. Maybe tomorrow.

    Well I need to go to sleep now. I am probably going to have to get up early tomorrow. the kids will want to know if they get to stay home or not. You know about the weather here. The newscasters say that a great winter storm is coming and it never does. But the kids are still hopeful.

    "See" you tomorrow,

    karen

  6. #16
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    Karen,
    There are a variety of methods for "flushing" the sinuses. I get lazy and don't do it often, but it really does help when you do. One easy one is called "Sea Spray", I think. It is sorta like nose drops, but you lay on the bed and squirt it up in your sinuses and let it loosen the thick stuff, so you can blow it out. This may be graphic for some of the people reading this, but it is really a relief to chronic sinus sufferers. The problem with having a chronic inflammatory disease with sinus problems is that the mucous membranes are always inflammed (swollen), and the thick secretions can't properly flush out. Then they sit in your sinuses and make matters worse (pressure, infection). That is why flushing is so important. My ENT gave me a device to put on a water pik for a more forceful spray, but I have yet to brave it. haha
    Glad to hear that Tony is checking into it. Believe me, I am thankful for it being in place when I am down and needing my hubby.
    Sorry to hear you were having a down day. I understand the lonliness. I speak to the ladies at church, and I email several friends, but I don't actually see or talk to many people day to day. Sometimes I would give almost anything for a little tea and company! (Not the kind that would care about my messy house, either. Just a kindred spirit to chat with.)
    Yes, the winter is giving odd weather everywhere, isn't it? Here in the Northwest (Seattle area), we have had several days of beautiful sunshine (not that I can get out and enjoy it!!), with cold, cold nights. At least it is not depressing.
    Hope you are having a better day today. Cyber hugs to you and spiritually there with you.

    Susan

  7. #17
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    I use the device on the water pick and it is not as bad or scary as it seems and it works well. My rheumatologist told me that chronic sinus problems are common in Lupus for the reasons that Suzique stated. I also use a nasal spray prescribed by my doctor, so the two together provides a lot of relief. So, believe me, we understand and Suzique, no it was not gross.....it is something that most of us deal with on a daily basis. Thanx :lol:

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  8. #18
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    Hi Susan,
    thanks for your response. I haven't been able to get to the store, but I plan on doing that tomorrow.

    I think that a tea party is great. I'll come there first then you can come here. I would be like the kettle calling the pot black for me to have a problem with your messy house. I'll bet mine is worse. I could sing that song: My house is messier than your house
    My house is messier than yours
    My house is messier 'cause I still have 8 kids living here
    My house is messier than yours.

    I think that I should be the next American Idol and sing that song..........do you think that it would sell?

    Saysusie, Thanks for the info. I talked to my hubby about getting me a waterpick. that sounds interesting but until then, I will try Susan's idea until I get one.

    humming myself to sleep........

    Karen

  9. #19
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    Apology.

    Although you'll find my house a mess.
    Come in.
    Sit down.
    Converse.
    It doesn't always look like this.
    Somedays it is even worse.

    Author unknown
    (A plaque I remember from one that hang from a nail in my Mum's kitchen in the pantry room.)

    My next home will have machines, vending machines.
    I have Lupus. So *^#@! what.

  10. #20
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    I've been dealing with sinus related headaches all winter - and then nosebleeds. Yuk...not sure if I can do the water pik thing, though...hmmm.

    A Roomba...vending machines...dim lighting...(to hide imperfections - both on me and my house.)

    I like that picture - a very low stress household.

    If someone is coming to my house to take the measure of my housekeeping, then I don't want them to come anyway....come for my company, or don't come at all. :lol:
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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