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Thread: I dont know how much more I can take

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    Post I dont know how much more I can take

    I am frustrated. Sorry if this is random. I am at my wits end. My name is Erin, 27, wife and mother of one, 4 year old boy. I was running a daycare in my home, but had to shut it down because I just couldnt do the 12 hours/day 5 day/week anymore. Plus I was always sick from all the germies the kids brought into the house.
    I posted on here about my symptoms a few months ago. Over the last month I have had confirmation of lupus. I went to get a biopsy of the painful, red lumps on my legs and the report came back as lupus panniculitis. I have had joint pain, muscle pain, the butterfly rash an other various rashes, my hair is falling out like crazy . My ana was positive, C4 borderline low. I am just exhausted as you all know what that feels like. Recently the right side of my face was droopy and dr said it was bells palsy. Luckily that went away with 3 days of starting antivirals. When I was at that appt my blood pressure was 146/103! My normal is 120/80. Since the recent diagnosis I have started 200mg of plaquenul 2x's/day. I go back on 3/2 and if I am not improving then rheumy said he will start me on antirejectants.

    Yesterday was the worst. I had a major realization that my life as I know it will never be the same. My family and I went out to do some shoppping. I made it half way through the store and I could barely walk. My ankles and legs were so swollen. By the time we got home my lovely lupus fever kicked in and I curled up in a ball on the couch for the rest of the evening. I just dont know how I am going to survive this without any pain meds. I've tried 800mg of ibuprofen and Tylenol Arthritis and neither work! All this pain and stress and making me depressed. I just dont know what to do or how to cope with all this. Sorry if I sound like a whiner I just cant live like this. How do you cope with the pain and the ups and downs. It seems one minute I'm fine and then the next I can hardly walk.

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    There are definite ups and downs...it sounds like they need to get you regulated on the proper meds. It sounds like you need to take it easy right now and even though you have a good day...don't over do it. Wait til you really have a good period to do physical things. It is a definite emotional adjustment..but you must remember there are good days ahead. If you are not happy with your medical care..seek another opinion. Why no pain meds??At least at night to get some rest? Hang in there.
    Andrea

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    ErinNicole (02-09-2010)

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    Hi Erin,

    I am sorry, that you are having such a hard time. BTW, you are not a whiner. Sometimes you just feel better, when you write it all down and people who understand what you are going through, read it.
    Most of us have been, where you are and will get there again, because this illness is very unpredictable. You will always have bad days, really bad days and you will have good days.
    Your doctor will find a way, to help you.
    I take NSAIDS for joint pain and they help somewhat.
    I wish you better days and painless days.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    ErinNicole (02-09-2010)

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    Thank you so much for the caring responses. It is comforting having someone who really knows how I'm feeling. I broke down and called the rheumy. I got in for an appointment at 10 this am. He wrote me an rx for Imuran and for Meloxicam. Hopefully something starts to work because I just dont know how to carry on. I quit my job, dropped out of school this semester(nursing) and I have a 4 year old to care for. I have a family to care for. There isn't any time for Mommy to be sick.

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    Hopefully you will get some relief..you can always return to school when you get yourself on track. Sounds like you had a VERY full plate. Young child/job/school....are you Wonder Woman??? My daughter who was just diagnosed (23) is applying to nursing school in a few weeks.Hope she can do it...! She has really bad fatigue. Take care of yourself...be well...keep your chin up
    Andrea

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    ErinNicole (02-10-2010)

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    Hi ErinNicole,
    Welcome to WHL. We all understand what you're going through. Just being a Mom or just being a student are both things that take a lot of energy. Running a daycare takes superhuman strength - I know - I did it back in the early '80s.
    Like you, I've recently had to quit my job (teaching in a large high school) and it has been tough getting used to a slower pace.
    Is it possible for you to take any of your courses online and then get back into the classes at the nursing school when your son goes to school next year? I'm sure that once your doc finds the right combination of meds for you, you will be able to accomplish your goals. It may take a little longer, but be patient with yourself, and you will do it.
    Gentle Hugs,
    Marla

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    ErinNicole (02-10-2010)

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    hi ErinNicole,

    welcome back. I am sorry to hear about your worsening symptoms. Sounds like your dr. is taking a very aggressive approach to treating your lupus, and i am glad. I don't take Imuran, i take MTX, but there are a few here who do take the imuran. I hope it starts helping with your swelling and aching joints very soon. Like Marla said, hopefully, once the dr. gets your symptoms under control, you will then be able to return to some of your activities.

    Yes, it is very difficult when we realize that our lives will have to change, but change is ok....we just have to learn what we can do, and make sure that we don't overdo anything. I also can't shop....the fluorescent lights wear me out very quickly. When i can, i use a shopping cart, and prop myself up on it while walking through the store.

    I know your little guy is the light of your life...enjoy lots of hugs.
    Phyllis

    share a smile today

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    ErinNicole (02-10-2010)

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