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Thread: Been forever since I posted...here goes!

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  1. #1
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    Default Been forever since I posted...here goes!

    Hello all,

    Been battling waking up to feel as if every bone in my body is broken and someone is shoving something in my feet as I walk, terrible headaches, a wicked cough that I have had for over two weeks without sign of it letting up or getting better, I have developed two sores on my nose by my eye that are all crusty and icky looking makes me not want to leave the house and I feel as if everyone notices that first! I have lost 27 pounds for no reason and the real kicker I am on steroids right now and can't gain weight to save my life.

    I have a debilitating headache that I can't get rid of, a stabbing pain in my neck that sends electrical shocks down my spine. My back hurts no matter what I do. I was supposed to go to the Rhumy tomorrow but my car broke down and I have no one to take me since my friend is a bus driver and school happens to start tomorrow as well! I have pain in my kidney region but only urinary symptom I have is frequent peeing! Crushing chest pain, heart palpitations that freak me out and wake me up, I wanna give up!

    I had to vent because I feel like a big baby and I know here I will get the I have that too and the encouragement from all of you who have been here done that!

    Should I give my PCP a call and see if they can do anything for my pain til I can get to the Rhumie next week? OR just keep taking the crap that seems to have no help what so ever? I feel like my doctor is going to feel that I am a drug addict soon but who can live with this pain? Seriously?

    Thanks in advance for the help..and the words of encouragement...you guys are truly super!

  2. #2
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    I'm so sorry you feel so bad. Call your doc, we deal with pain daily. So why take on more added pain? I wish I could make your car start for you. You sound as if you need lots of hugs, sending lots now............. Did you get them??lol. Hope you feel better soon, I'll say a prayer for you when I go to bed tonight.
    Cheryl

  3. #3
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    Thanks Cheryl_v, I really need the prayers right now. And the hugs helped a ton! Thanks

    Things have gone from just bad to terribly horrific. I think what brought on all the crap that I am dealing with now, is the fact that my oldest son's dad killed himself in May. I now have my son full time instead of alternating weeks, or months, and weekends. He started school today in yet another new school, I feel so badly for him because when he needed his dad the most, he just up and left. I am dealing with the grief my son has and the grief I have over losing someone I once loved very much, and have no answers as to why he even left us. Ever since Curt died, I have been getting sicker and sicker, and now my son is terrified that I too am just going to up and die on him, and I try to assure him that if they can treat it mom will get better. But since I am still sorta without a diagnosis, it makes things difficult to treat. I am sure when I go see the Rhumatoligist I will get a diagnosis of something, I pray anyway, because this is beginning to feel like it is in my head, and not a real illness! But since I have been dealing with it since the age of 4 I am positive there is something wrong!

    IT seems that when it rains here it pours, I can't deal with much anymore, and have been recently put on anti depressants and anti anxiety meds, because lets face it I am under so much added stress right now it blows to high heaven!

    I am sorry I am complaining about all my aches and pains, and all the things that have gone wrong lately, but lets face it, my husband fails to realize that I am really sick and thinks it is just an excuse for me to be lazy, and lay around all day long, especially since he can't see that I am really truly sick. (gotta love the invisible illnesses!) My kids too are on his bandwagon that I am a lazy worthless piece of poo! My husband has never ever come out and said it, but the actions speak volumes about how he feels about me right now. I just wish there was a way to help him understand that this isn't an excuse, or me just being lazy, trust me I would love to clean the whole house in one day and get it the way I like it when I feel really good, but those days appear to be gone for good now!

    My mom is the only one who seems to believe me that there is something wrong, maybe because she raised me and knew when I was little that there was something very wrong about me and maybe the fact that I spent 4 months in the hospital at the age of 4 because they couldn't figure out what my mystery illness was and just chalked it up to JRA.

    I am rambling but feel somewhat better for being able to get this off my chest, it somehow feels easier to breathe now! It is nice to know that one is not alone, and that there are others out there like me who understand what I am going through and can help support me where at home I am majorly lacking in the support arena!

    Sorry if my rant has confused some, lol...I feel better anyway! Time to call for a doctors appointment! I need to lose this pain and fast!

    I will post after I get back from the doctor to let ya all know how things went and if I am getting any help from them!

    You guys rock..thanks!

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    Your welcome, I know to well how you feel. The "just venting on pain" topic is me. I have a husband and 3 kids who act as if nothings wrong. I still have to do everything around here. Your greif :cry: I can relate too. At the end of April, I lost my sister, brother-in-law, and 2 nephews in a house fire. They could only save my niece before they died. They died trying to save the boys (I think God my other nieces were at a sleep over). Life can be so hard at times, but God never gives you more than you can handle. He must think you're a strong person, we all are inside. Some of us just don't know it, thats all. I'll leave you with my favorite saying I found (author unknown).

    "to the world you may be one person, but to one person you may be the world" Hope this helps, words I live by now.

    P.S. Doesn't venting feel kind of good? It helped me alot, so I'm all ears when you need someone. Let me know how it goes at the doc.
    Cheryl

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    Thanks Cheryl for making me feel less guilty about venting! I really hate feeling like I am constantly complaining!

    I couldn't get into my doctor until today (Thursday) because she was off yesterday and the jerk I detest was on call (he is the idiot who thinks I am just after pills, and since I am in pain...wouldn't be a good idea to see him lol) He is also the idiot who said FM and Lupus were just made up diagnosis so that people could live on pain pills! What an idiot...swear to all things holy he got his Medical license at Wal-mart and on clearance none the less!

    I would like to say I am so sorry for your loss, and I know what that loss can do to someone with our illness!

    I also have three kids who think that I ask them to do things for me because I am "fat and lazy" Since when did 147 on a 5'6 person become fat???

    Contact me cheryl and maybe we can chat sometime on yahoo. It would be nice to have someone who knows what I am going through to be able to compare notes so to speak!

    Talk to ya soon! Hope your day is going better than mine!

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    Jill;

    My thoughts and prayers go out to you and your son! I had a friend die of suicide many years ago - it is such an inexplicable tragedy that so deeply affects all who loved the person. There will always be a hole in your heart, and one in his son's, it may get a bit easier over time, but the memory of the love and the love lost never completely fades. I hope you have those around you who can hold you in their hearts and arms right now.

    If his new school has counselors, please consider calling one of them and asking them to talk with your son regularly during this year - this will probably be the most difficult of his grief.

    And you, young lady....GET TO THE DOCTOR!!! losing all that weight when on steroids, the cough, the sores, you need to see your doctor!

    If you have a counselor available - an EAP where you work (if you're working), your minister if you go to church, or some other means of talking to someone, please do so. Talking helps so much. We're all here for you as well.

    Hugs, dear,

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    I would love to chat, I don't have yahoo though. You can e-mail me though (I'm a slow typer), or we can chat back and forth on this forum. I have no one around me with lupus or FM, so no one understands. I had a jerk doc before, hated women. Nice when my husband was around, mean when he wasn't. Said women were complainers over anything, Thought I was making everything up so I'd have a reason to be lazy and complain all day. I sleep 4-5 hrs, hardly ever sit. I clean, watch kids and run a Day Care from home. I think that qualifies me as not lazy. I'm 5'7 and 172 lbs, so he told me to drop some weight and my problems would go away. That was a couple years ago, needless to say I got a new doc. He's great, listens to me, gave me a dx of FM amd early lupus, says my weight will go when I want and capable of it too. He's going to have to blast me out of his office to get rid of me. I even told him of my former doc, so he understands why I'm uneasy at times. I'm lucky, he's the only doc since its his private practice.

    Sounds like we have lots in common, my e-mail: cherylvanderhoff@msn.com
    Cheryl

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    Hatlady and Cheryl;

    Thanks ladies so much, I have bronchitis and am in full flare! YAY me! :shock: Like I didn't see that coming! Now I get to chow down on antibiotics and more steroids, I am sick and tired of having to take pills daily, it blows, I was down to just my HBP meds and something to help me sleep and now I get to add a few more to the mix!

    If they help, I won't care so much!

    As for my son, I talked to the school counselor the night of orientation, and told her what was up with my son, so that if he had problems, she would be aware of the situation. Man typing is difficult now, feels like my fingers are jerky and don't wanna work!

    I am seeing a counselor myself to help me deal with the loss of the ex, not sure if it is helping any yet or not, I am mad at him for leaving us and sad at the same time, guess it is working lol I gotta love my thought process now too, its screwy!

    I make no sense half the time!

    Thank you ladies for the help, and I will keep you notified of my condition!

    Have a great weekend everyone!

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    Jill -

    I just wanted to say that I am thinking of you, too, and that I'm glad you are coming here to vent and "talk."

    I, too, lost weight on the prednisone. So did my sister. We don't know why. It can also mess with your emotions, and with yours so raw with your recent loss and health, it's very understandable.

    Anyway, I hope your Rheumy is a good one. I work with survivors of domestic violence and sexual assault, so it really irks me to hear about doctors (people in power) propagating myths and stereotypes about women. I hope your experiences start to get more positive with the docs. I do hope they do some kidney function tests, too. My only symptoms of very bad Lupus Nephritis were pain in lower back, increased frequency of peeing, anemia, and fatigue. Is your urine foamy by chance? If so, tell the doc.

    Take Care,
    Missy

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    Holy cow :shock: it's no wonder you went into a flare! Take care of yourself, and let us know how the rheumy visit goes, okay?

    Sending you some extra spoons and ((hugs))

    RG

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