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Thread: I am new here and am looking for someone to talk to.

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  1. #1
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    Default I am new here and am looking for someone to talk to.

    I too am new to this. I have left several messages seeking to talk to someone else who has this disease that we share commonly. I am having many different symptoms and because I am in the buisness of pharmacy have came up with my own concoction. It seems to help if only temporarily. I don't know where I will be later on in progression of this but I hope that I can be around long enough to enjoy more of what life has to offer. I would really like to talk to someone and have said so in different posts. I am a mother of 5. 4 of which are teenagers. The last is 7 and he keeps me busy. I have a really stressful job that I will have to be leaving before to long. I can't keep up and the mind isn't working like it used to. If you would like to share some of your experiences I would like to hear from you, even if only to listen. I wish the best for everyone in this site. Until later, have a great evening :lol:

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    Hi Pharmacygirl34,

    I just wanted to say hello to you, I am new here too. I live in the UK and am 24 and married, with no children. I too am having difficulty coming to terms with having Lupus and more importantly not trying to let it affect my life. The trouble is that it does affect you.

    I work in London, although I dont really live anywhere near it so I have to commute daily by car, train and walk. The job can also be stressfull and i seldom work a full week. I am so lucky that my employer understands my situation and they actually encourage me to rest and take time off as they dont want to make me any worse. Beacuse they are supportive I will not work closer to home, as this is where I have always worked and I dont want to change my life in every aspect. My Husband thinks I am having a competion with myself to see how ill I can make myself. Although he is only joking.

    it is so hard to remain positive, dont you think? I have found this website so helpful though. I began to think that it is all in my head even after diagnosis as many of my symptoms vary so much. I began to get really oversensitive with my family as I felt some were being unsupportive and others I felt like I was being suffocated by them. It has really helped me to read that there are so many other people going through the same things, and it has helped me to look at my situation a little differently.

    If you ever want to contact me, please do. I so understand how you feel the need to talk to someone about this as I feel the same.

    Carly

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    hi girls,
    so good to read what you both said. i to am trying to come to terms with the life change. i was told i have lupus 2 years ago, but only now do i feel i really am accepting it as my reality. i have changed my eatting habits and exercise habits 100 % and that has done more for my pain and fatigue then anything my well meaning doc's have tryed.
    there is so much we still can do, but we have to be willing to make hard changes , changes that piss off our famlies and friends.
    if you need to chat i'm hear to listen. i know my spelling is a joke- sorry.

    hugs,
    melinda

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    Hi Melinda,

    Glad you dropped in on this post!!! I too was diagnosed a while back now - about 18 months now i think- and have only now begun to take steps to accept being a Lupie.

    I'm glad that the changes you have made in your lifestyle have helped you. :lol: I do eat very healthily now and avoid things that I know will result in a bad couple of days afterwards. That's hard though as some of them are my favouite things. :cry: So these changes have obvioulsy helped, but still the degree of my health gets worse overall. I feel like i am constantly building myself up for a physical (and maybe mental) breakdown until I take sufficient rest and start over again. Hey ho I know I will get there in the end.

    So what exercise do you take that helps you? I do have to walk most days to work. Some days obviously I cannot do this so I have a taxi account. ops: what other changes have you had to make? I am open to any self help techniques yourself or others may have.

    Carly

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    hi carly,
    thanks so much for writing back, its still hard to believe i am not the only one out there with lupus! i too walk to work (about a 3.5 mile loop), and i take hot yoga, that really has helped with the joint pain and the neck pain. i also take a dance class, thats helps mostly on a emotional level, keeps me from hating my body. when my feet and hips hurt i get on the bike at the gym or i ride around town for a few hours. i know i sound like a fittness nut but i don't do this all in one day . as i said befor what i put in my mouth and what i do with my body has helped so much more the the doc's drugs. also am on my 3rd week of 6000mg of fish oil, it seems to have really helped with the depression and anxiety. it's a little $ but its worth a try. has your husband been supportive of you?
    how much sleep do you seem to need inorder to have a good day? i still can't get that right. what med's are you on. supplements?
    have a pain free day!

    melinda in boulder colorado

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    Default Hey girls

    Carly, Thanks for your reply to my newbie post. Been out of commission but have been thinking about you.
    I have been dealing with this going on 7 years now and still don't have a definitive diagnosis from the rheumy. Soooo frustrating. So for now I am living on Vicodin, Tylenol, Excedrin and Phenergan for the nausea. It's literally a PAIN!!!!!!
    Some days I just can't seem to get my head on straight and feel like I have gotten NOTHING accomplished. This past month has been awful but I know it'll pass sooner or later. Currently waiting on my latest labs to come back to tell us where I am at. It is so hard to get a rheum appt around here but at least my current doctor is supportive and doesn't think I am a nutcase, tho I personally feel like it at times.
    I work in accounting in my job so lots and lots of numbers. Interesting anyway. LOL
    Would love to talk to you girls if you want to email me. Can't really use ym to chat at work but can email all day long.
    I hope you are having a great day (week). Someone has to be right? cause it sure ain't me.
    {{{HUG}}}
    Tracy

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    Hi Melinda and Tracy,

    Hope you are both having a good day. It's so nice to talk to you both.

    What is this hot yoga then? I haven't heard of it in the UK. Speaking of differences in the UK, I think the brand names for some meds are diffiferent so I havent heard of all the names you have listed. I am currently taking Voltoral (NSAID) Sulphasalazine (for crohn's and arthritis) Lansoprazol (more stomach probs) Plavixx ( to thin blood) I also have occasional steroid injections depending on which rheumy I see, some are more sympathetic that others I think. I know that lupus patients should avoid sulpha drugs, but to help with my stomach and arthritis the docs said I should take it and be monitored?? I know I dont understand it myself. I see two different docs and I get a different story from each one. I used to take vitamin B for hair loss, but that soon faded out. I always make excuses to myself and say that I will wait for the medication to take effect first and then try alternative methods. Each time I see a rheumy I changs medication or a dose is upped so I never know where I am. I think it is about time now I looked at alternatives.

    I find the exercise so hard, I am really fatigued and my hips really swell up when I go above my usual routine. Some days the swelling is so bad I cannot lift my legs an inch, so I really don't know what I can do. Some days I get so dizzy when I move a lot I go to pass out until I sit down. I usually walk for an hour a day, split into two parts and that really is all I find I can do. I occasionally do pilates which does help stretch in the hips and lower back, so I think maybe this is what I should concentrate on.

    Sleep wise, I don't know. I usually get around 8 hours, but this is not enough for me. If I had any more I would only be home from work a couple of hours before going to bed. I know this is the wrong this to do no doubt, I normally just plough along with my week and get weaker and sicker until I rest at the weekend or have to be sick from work. Luckily my employer is very good with me, but I hate calling in sick sooo much. How much sleep do you get?

    Blimey I've waffled on again. I have left you both a PP so you can get my work email address if you want to talk more later.

    Take care,

    Carly
    x

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    Carly I sent you an email this morning, did you get it?
    It does sound like your meds have different names over there. I'm not on any of the ones most of the people here are on but do know there names. I can't take NSAIDS anymore, for some reason I start swelling BIG time and that just ain't good with my high bp (which I take two meds for right now )
    My dr said the best exercise for me right now is walking. I have a weight machine at home and need to use it cause she says I am losing muscle but I feel SO bad afterwards I haven't been able to force myself to use it. I'm like you, I keep going during the week and end up in bed on the weekend which stinks. But I too, thankfully, have a very understanding employer. They have been AWESOME with me and it's why I really don't want to go work anywhere else, when I know I'd make more money elsewhere. I have a co-worker here that has RA really bad and they are understanding with her too. It's like a little family and if you need anything they are there ya know? More than my own family actually.
    Um, sleep??? what's that? Seriously I am so exhausted at the end of the days but just cannot relax to go to sleep. So I average about 6 hours a night which I pay for the next day and the next and the next. Vicious cycle ain't it?
    Anyway, I hope you are having a decent day. {{HUG}}
    Tracy

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    wow do i hate hip pain! hot yoga is a room that is turned up to 105, with high humidity. i know it sounds gross but it has really helped me with some of the deeper pain, and it really helps with my loss of range of motion. today is one of those days where i just need reminders of all the good things i have, i needed a reminder of all of the parts of my mind and body that do still work, and are pain free. thank god for positive people who are allso living with illness. not sure yet why i was delt this hand in life but, i'm going to make the most of it.

    thanks again for reminding me that i'm not alone!

    melinda

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    My friends with MS keep telling me I shouldn't use heat because their Dr's have told them that. I have found that a hot tub does me more good than anything else for pain relief. Heating pad helps as well. Sounds like many of you are using heat for relief. Does anybody know any health reason why a person with Lupus can't sit in a hot tub etc? My mother who had Lupus took lots of hot baths for relief as well.

    If I don't get 8 hours of sleep I've got a hard hard day ahead. On the days I work I have to come home and lay down for at least 30 min to an hour. If I don't I really don't function/think well and get too tired and start feeling bad. On the days I don't work I lay down for an hour before I go pick up my kids from school. This helps me get through homework, supper, baths etc. If I miss that rest time I'm useless and set myself up for a flare up.

    My mom rested for an hour every afternoon no matter what except when she worked full time and even then she found a place to rest during her lunch hour. On weekends I call quiet time in the afternoons for the entire family. The kids go to their rooms and do whatever as long as they don't bother me. When my mother worked full time she came home and sat in a comfy chair while the rest of us got the evening meal ready. After that she took a bath and went to bed. She went to work and rested during the week. On the weekends she did lots of things. Of course some nights she couldn't come home and rest as we all know life goes on and we have to go with it. ha ha

    I'm new and introduced myself in the introduce yourself section so please check out that posting to get to know me better.

    Dency

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