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Thread: New member, not new to Lupus

  1. #21
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    Default Support

    You guys are all wonderful! You make me laugh and feel much less stressed about the little things. Funny how you can let stuff like a messy house get on your nerves, until you put it into perspective.
    Love the little song. I have a 7 year old that things his toys are excellent decorating pieces. Then my husband likes to go around the house looking at a section of the newspaper then laying it down the last place he was! Clutter, clutter, clutter. Oh, well. The toys and newspapers hide the dust! haha
    I am on my second day of double (20 mg) prednisone. I was afraid it would have to go up to 40 to get some relief, but I feel a little better already, just at 20. I have not been below 10 for 5 years, so a small jump to 20 wasn't necessarily expected to do the trick.
    I learned something at the rheumy's yesterday. The nurse practitioner told me that us lupus patients have been bombarded with viruses this winter, and even if they don't hit us with the same symptoms that they hit others, they are challenging our poor immune systems and causing lupus flares. Sometimes even with flare symptoms we have not experienced in the past (I read about some of you having weird rashes that you haven't had before). She said we have to give in to our bodies and rest, as that is the best weapon we have for the viruses.
    Thought I would pass that on, so maybe the urge to rest would be heeded...

    Susan

  2. #22
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    Hi all,

    I think a rhoomba.....vending machines.....a housekeeper too. Possibly a robot or at least one like Alice of the brady bunch. I do like the dim lights( mood lighting) sounds great to me.

    Susan, I hope that the 20 mgs of prednisone helps and you don't have to go on more. It is great that you are feeling better, though.
    It is interesting what you heard at your docs office. I have had some symptoms that have made me suspicious of that, too.

    well, Hi-ho, hi-ho, it's off to bed I go,

    Karen

  3. #23
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    Machines....Since my wrestling match with a jar of Aunt Nellie Whole Beets I've been eyeing up jar openers. Big jar size..pickle size.

    Oh, my aching hands,
    Oluwa
    I have Lupus. So *^#@! what.

  4. #24
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    hey Suzique,

    How are you doing? I haven't heard from you in a while, but I was off for some of it. Pain, stress(family), and just depression has been the cause of not replying to you.

    I am still having trouble with the sinuses, oh well.....

    I am having a hard day today, also. My family does not realize the one step forward and two steps back of this illness. They think that if I was able to get dinner for the last week then I must be well. must admit that I am still trying to get to know IT myself.
    Tell me if you experience this: when stress or hard work comes along a delayed reaction from IT. That is what I seem to experience.

    How are you doing on the prednisone? Have you been able to get off and just go onto plaquenil?

    I do hope that all is well with you.

    Lazing around,

    Karen

  5. #25
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    Karen,
    Gosh - sorry to take so long to reply. I haven't popped in on this section in a couple of weeks. I was doing pretty good (down to 20mg of Prednisone - not off, yet), then had a reaction to the new cholesterol drug. Made me sick, weak, and basically go into a flare. Spent last Thursday in the ER (doctor's office sent me straight there and wouldn't let me drive - I mean, I was SICK). Still really weak, but doing better.
    Did you ever get to that ENT for your sinuses? What did he/she say?
    I have caught a few of your threads regarding the family meeting, your large family (7 kids!!), and your activities in general, so I have kept up by reading them. I generally pop in here every day or two and read for 45 min to an hour before I tire. Sometimes I try to respond to what I think I can be helpful with, sometimes I am just too tired to do anything but read. Still, I am able to keep up with all of you, just by reading. It is nice to hear your support of each other. Gives me a sense of peace knowing you are all there. And Oluwa makes me laugh all the time!
    Hard to know if the Plaquenil is helping, yet, with this drug reaction. Hopefully, by the time it (the chol drug) is fully out of my system, I will be able to see a response to the Plaquenil, and begin the weaning of the prednisone.
    Thanks for checking in on me. Hope you have some good news regarding the sinuses soon.

    Susan

  6. #26
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    Hey Susan,

    So sorry to hear that you are in a flare again. That is terrible. Did you stay in the hospital? Maybe this time the flare will only last until the meds filter out of your body.

    No I have not been to an ENT. This has been an awful month. I think the best part of February, this year, will be March .

    My daughter, 18 yrs. old, is ill right now and I am at a loss what to do. She has had what appears a recuring illness only it seems to be getting worse. Not sure what it is, however, because she does not test positive for what the doctors want her to test positive for. (flu,bronchitis,strep,etc...)

    All I know is what she doesn't have. She doesn't have the flu and bronchitis and pneumonia and stomach flu.... Whoopie!.... She has pain in her chest,back of her neck,head, and very high fever. The higher the fever the worse the pains. The only thing that is keeping the fever at bay right now is a regular dosage of tylenol. Now tylenol does not bring it back to normal it brings it back to 100. or 101. Ibuprophen does nothing for her and aspirin doesn't either.

    We went to the emergency room on Saturday. All they did was test her for flu and do a chest scan. No blood tests. The diagnosis was possibly flu even though the test is negative. He then prescribed antibiotics for the virus. If you ask me he was just trying to strike in the dark and hedge all his bets. A high white blood count (something she found out the day before at a clinic) and high fever means infection.

    I made him angry when I asked him, "which part of 'mother has lupus' do you not understand? I know he is not a rheumy, but this is the 3rd doc that I have taken her to and get the same stuff. It is like there is an unwritten rule, if you can't see it it does not exist. I am so exasperated.

    So how high is your cholesterol? Has the doc placed you on another cholesterol drug? I understand that there are times that you don't feel like answering a post. I find if a day is particularly draining, I just dont have it in me. I think that it is a laugh to say to stay away from stress. This month that is all I have been under.

    So ....here is to March.

    Praying for your flare to go away,

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  7. #27
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    Karen,
    You are so sweet - thank you for the prayer.
    Have they even mentioned spinal or brain issues? I would be concerned about ruling out meningitis, with the neck and back pain along with fever. Also, as you said, Lupus. Fever without know cause is certainly a known symptom of IT.
    You have really had a month, haven't you. So sorry to hear it. I will pray for you, too. Sounds like you could use the support. Are you getting any rest with all the things happening? Hard to keep facing the challenges without strength.
    My cholesterol is quite high. 260's, I think. I eat little fat, never have liked fatty foods or much red meat. But both parents have very high cholesterol, and they eat a nearly vegetarian diet (they have a huge farm and grow their own). I was on a combination drug and tolerated it, but one of the components has been found to be useless, and my insurance made me pay high co-pays for it, so the doc switched me. Guess I need to switch again. Sigh.
    Well, I really need to get to my studying. I have neglected them lately with being so sick. Gotta catch up.
    Take care, my friend.

    Susan

  8. #28
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    Hi Susan,

    I had the insurance problem with a drug that was prescribed for my esophugus problem. the insurance refused to pay for the nexxium even thought the drug they say works the same does not with me. Even with the doctor writing them, they refused to cover it. I am trying another prescription, but with all the "drama" this month, I have been sick many nights. i actually think that Barretts will take me out long before the Lupus.

    So, What degree are you pursuing and how long will it take you to complete it? It sounds great that you are trying this approach. It is like the saying, When God closes a door he always opens a window. Maybe you found the window.

    My husband has high cholesterol and refuses to take meds for it. He is trying to control it by diet. The only problem is he is pretty fit and tries to eat right. It seems like he views it as a weakness to have to take medicine.

    Well, it has been quite a day. Nadia still has fever. I am trying a new doc tomorrow. I was worried about meningitis myself, but she was able to look down.

    "see you" later,

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  9. #29
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    Karen,
    That is good (that she can look down - big suspicion if her neck was "stiff").
    My hubby is the same way! Even taking an advil for a bad headache is stretching it for him ("Oh, it'll go away, if I just give it time.")! Being fit and eating right is not always enough with cholesterol. There are those of us who have a hereditary predisposition to have high cholesterol, and none of our good efforts seem to work. I've seen it many times.
    I have been an RN for 25 years now. I have tried all sorts of areas in nursing to work around my illnesses (primarily Crohn's Disease and Lupus), but it just doesn't work. Too many days of not being strong enough to just "make it" through the day. Makes me an independable employee (Only a problem with the last job. I finally gave up and went on disability.). I needed something that I could schedule when I was up to it, but let no one down when I was not well. In my searching, I found that there is a fairly new speciality in nursing called Legal Nurse Consultant. They can work in Risk Management in a hospital, work for the government, insurance companies, attorneys, etc., reviewing medical records and rendering summaries and/or time lines. It can be done as an independent, scheduled to my convenience. Also, since it would not necessarily be full time, I am allowed to earn up to a certain amount without being forced off disability. Let me get my feet wet before plunging in, so to speak. Anyway, the course of study is a year long, and it is primarily legal training. It is really interesting. Some of my nursing friends are a little "put out" with me, as if I have deserted them for "the other side." Many nurses view attorneys, particularly personal injury attorneys as trying to catch them doing wrong. My point of view is, if a nurse is not doing wrong, she/he has nothing to worry about. If they are doing wrong, they should be called on it. I know there are "frivilous" law suits, but a good legal nurse consultant would tell the attorney that just cause is not there and refuse to have anything further to do with that case. I would be that way.
    Oh, well, anyway, I have rattled on enough. I am very excited (as you can tell) to be doing something specific with my future. I love quilting, crocheting, gardening, and so on, but I needed to be doing something more. I am hoping this is the answer.
    By the way, I had the same fight for 8 months with the insurance company over Nexium. I didn't respond to the other drugs, either, and I have severe reflux. I was up with pain in my chest and "reflux" in my mouth many nights, before they finally gave in and approved it. I still have to be careful what I eat and how much, even hours before bedtime, but it is manageable. I hope you are able to get some decent resolution to your suffering. If you ever get it approved (after failing two of the other drugs, I think most insurances will go on and let you have it), call the company (AstraZeneca 1-800-796-3948) to get on the Purple Plus program. They send you a bunch of literature about reflux, etc., and Nexium, but the important part is they send you a card you can use at the pharmacy to help with your co-pay. It takes off up to $30 of your co-pay! Mine is $50, so I really appreciate the help. Any other friends out there taking Nexium, please take advantage of this. We pay enough for medications, that I for one think giving us a little relief is great! I can't remember if they do this for 6 months or the full year, but either way, that is a lot of savings.
    Well, that is all for now. I should get back to the books. Take care.

    Susan

  10. #30
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    Hi Susan,

    I hope that today was a great one for you. Your new work sounds fasinating to me. I really hope that you enjoy it as much as nursing.

    Not able to talk much, today. I feel like a huge weight has landed on me. I am sluggish, and tired. My whole alimentary tract is acting up. Cant keep much down, no appetite, what stays down causes watery intestinal distress. I am very depressed but it could be because I feel like I am walking through jello........soooooo sluggish. Maajor brain fog. Started yesterday when I was writing you. Could not remember how to spell door. Tried dore,doar,doer, etc...Finally I went on word and typed a sentence with the word dore in it and pressed spell check to find out it was door.

    We took Nadia to another Dr. today and he thinks the pain is pluresy. Her fever still persists. He thought maybe it was a little bronchitis, but not sure that he heard anything except the pleuresy. She seems in better spirits, though.

    Well I am going to go to bed as I am not worth much right now.

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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