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pharmacygirl34
03-19-2005, 07:29 PM
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:

Evenstar
03-21-2005, 07:10 AM
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

derlinda
04-04-2005, 07:41 PM
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

Evenstar
04-06-2005, 05:08 AM
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. :oops: what other changes have you had to make? I am open to any self help techniques yourself or others may have.

Carly

derlinda
04-06-2005, 07:01 AM
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 :D . 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

TracyDawn
04-06-2005, 12:22 PM
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

Evenstar
04-07-2005, 04:30 AM
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

TracyDawn
04-07-2005, 05:38 AM
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

derlinda
04-07-2005, 12:57 PM
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! :wink:

melinda

dency
04-07-2005, 07:44 PM
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

Evenstar
04-08-2005, 05:28 AM
Hi Melinda,

Thanks for the hot yoga explanation!! About the heat thing, I'm not sure. I do find that heat is a pain relief and comforting for me. I also find that hot tubs/baths increase swelling though?

I hope you are feeling better today. I know what you mean though it is a constant battle. You have done the best thing by finding this site, I just can't believe that it took me so long to do this kind of thing. Although we have lupus and obviously that is bad, I really do think that it makes us better people. We have put up with so much cr*p and we are learning from it. I think that eventually we learn more about ourselves and gain a better understanding of what makes us tick. That is an advantage of having a chronic disease - we are more compansionate and are more in touch with our emotional side and can deal with a hell of a lot more than someone who just bums through life without a care. Especially though this site where we can help each other, we are doing good things. Don't get me wrong I am certainly not positive about having lupus and sometimes I cry and wonder if I did something bad in a past life. I cannot wait for a day when I can accept having lupus, if there is such a thing, or even better wake up one day and not feel pain or sick or tired etc. The reality is that I am struggling to get on with my life, but deep down I know I have to in any case as this lupus is not going to go away. Then that makes me feel worse as I think why should I have to struggle when there are so many healthy people. Although, there are so many other people much, much worse off. At least I am alive and have all limbs intact, it can always be a lot worse. I feel guilty for feeling so blue for myself too. I think maybe I have two brains and they constantly argue and reason with one another -ha ha. Who knows, if ever you need to chat just contact me - you have my email address.

Carly
X

Ellen Becker
04-08-2005, 03:08 PM
It was confirmed in December, 2004, that I have Lupus. My mother died of Lups complications last January. I have had symptoms and flares, incuding heartattack. I am taking prednisone and plaquenil now, but my biggest complaint is this constant pain in my upper left tummy. Does anyone have any ideas what it could be. Gastroen says IBS, CT shows nothing. I have hearing loss+vertigo+tinnitus, multi-nodular goiter, GERD, Kidney Inflamation, simple cysts in liver and spleen, enlarged heart and spleen, bouts of pleursy, sinus and urinary infections, gastritis, hair loss, Raynaud's, joint inflamation, pernicious anemia, and lots of weird blood test results. What is the best course to take?? I know I can't get rid of it, but I would really like to have a better quaility of life.

derlinda
04-08-2005, 03:53 PM
dear ellen,

my symptoms are much diffrent then yours so i will not be of much help. but know that you are not alone and that many people with your symptoms and worse have pulled out of it. you life does not have to look like your moms.
i'm sending you a prayer. keep pushing forward!

melinda :P

itsbecka
04-08-2005, 04:40 PM
I too had pain nearly constantly in my upper left abdomen. Finally I got my doc to do an Upper GI endoscopic peek, as well as a full abdomenal sonogram. They finally found the problem, or should I say problems. I have an enlarged liver, enlarged spleen, hiatal hernia and nodular Brunner's gland (which means polyp-like growths) and which is thankfully benign.

Talk to your doc, insist that he do at least the sono on you (though I'd shoot for both).

Becka

derlinda
04-09-2005, 05:58 AM
hi carly,
tryed to send you a email at work but it came back, im going to try to send you my address...
best,
melinda

val
04-10-2005, 05:09 PM
Hi All,
Sorry for my late response. I am 3 years from start of illness 18 months since diagnosis. I have retired on ill health and the pressure is off me. It certainly has made a difference.
I have found other ways to occupy myself. I have set up a support group in Leicester England. Where I live. I have built three message forums, A fun one, A gif one as I have learnt to personalise gifs and a Lupus one. I have started writing poetry. All these activities don't mean I have to do to much moving about so I can sit at my computer even on bad days.
I enjoy most days. i tolerate the bad days.Its not going to go away so I certainly won't let it destroy me.
I guess I am lucky I have reached total acceptance.
I will chat to anybody who wants to talk. all my links are in my signature
Val

ANewDay
04-16-2005, 11:40 AM
I have not been in here for a bit and its nice to know that good people are still dropping by. I was diagnosed a one year and one month ago.. (talk about keeping track). I was devastated but you really do get over it.. Well not in its entirety but I guess you learn to accept it little by little. Sometimes I even forget I have it, until the joints start to hurt, or the hives, or the soar like stuff on the roof of your mouth; But in spite of it all, I have great days, good days, so-so days and just plain horrible, you just gotta be ready to accept it and deal with it. You must really really take advantage of them and enjoy! As far as support, its ok although my family doesnt really get it, especially my sister. When I get tired often, she says, "stop being lazy," or "you always have something wrong," I have learned to overlook those things. Because if i dont it will stress me and then I am worst off.

I have promised to make some changes, but I just cant get around to doing it... such as, eating healthier, excercising, etc. I start but never continue. We Lupie's have to have a good diet and excercise. I am just lazy and overwork myself (with the office).