View Full Version : Hi
08-03-2012, 03:37 AM
I am so new to suppport groups. I am 50 was dianosed with Lupus 5 weeks ago and trying to get into the university. At first I thought it was a death sentence and now I realize it is a one day at a time deal. Like Yesterday my finger tips hurt so bad I couldnt do anything. My right ankle hurt so bad I was unable to drive for long periods not counting all the other joint hurting like ----- and my eyes itching everyday and this getting no sleep but I found if I just accept that is where I am at it easier to deal with then fight it. I have 3 kids Amber who is 26 Bryan who is 29 and Merlin is 8 and I worry more about how my family is going to be then me My husband has been doing the cooking and he works 12 to 14 hrs a day any advice on managing this would be great. I need to be a mom and a wife and these darn steriods sure are keeping me up lol vicky
08-03-2012, 04:37 AM
welcome to whl family we are here for each other in good and bad
08-03-2012, 08:57 AM
Welcome! A finer group of people you'll not find anywhere than here! Visit here for a good laugh or a shoulder to lean on. We'll share with you whatever we know. We aren't doctors nor do we portray them on tv so don't hit us up for free diagnosis but beside that we are a wealth of information. Peruse past threads as they probably contain information you'll find helpful.
08-03-2012, 10:36 AM
... We aren't doctors nor do we portray them on tv...
Ahhh but some of us have stayed at Holiday Inn Express!... Sorry, bad joke, won't happen again.
Welcome to whl, Vicky. As for advice on managing... being a husband myself, I'd hate to throw more on yours, however... tic - Do your older children live nearby? Maybe they can pitch-in a bit more? Family friends? Church? It can be tough to familiarize other folks with what you're having to deal with, but you can only do so much before you drop and then have a "flare-up" or a visit to the hospital, so you do have to take care of yourself first in order to avoid those issues, then take care of the others. I'm not good at it myself, since I'm a whimpy, spoiled, baby of a brat, and my wife is wonderfully patient with me (she has medical issues of her own that aren't easy). Ask more questions, read the threads (especially the "stickies" up top).
08-05-2012, 07:46 AM
i am 1961 baby.
i have had issues for about 35 years, and diagnosed about 3.
there is a section called my profile.
in it we can write what we want others to read about ourselves.
please read mine to learn a little more about me.
08-05-2012, 03:40 PM
Hi thank you so much for your reply. I have so many questions about this lupus. Like do you ever feel better? Will I ever be able to work out? Why did I gain weight and evertone else is losing there's? I h#ve pain so bad that I am laying in bed crying. My finger nails are blue. My lymph nodes in my neck are so sore. I don't understand any of the test. I can't wrap my mind around this how can I expect my family too. I wish that I had a Dr that explained more he said take this and that see you in two weeks. I bet that cost 500. I have noticed if I laugh things off I do better. Like making the bed well lets put it this way sheets did not get tucked in :-) the laundry does not get folded it hurts right now to do those things. Do you take sleeping pills to sleep?
08-05-2012, 05:25 PM
Attitude is very important in this Vicky62. That ole "Cheerio! Stiff upper lip there, with a smile, hear?" kind of thang, when you can, but don't beat yourself up over it... However, yes there are good days, OK days, bad days, and also awful days and great days. Sometimes, you can string a few together and forget all about having lupus. Other times you'll string days together and can't get away from it... Blue fingernails aren't good. That's probably why your fingertips hurt. Do you have a way to check your O2 level? Maybe you're not breathing correctly, and you're low on oxygen. Are your lips blue? However, some folks have issues with their blood vessels, especially in the fingers and toes, with Renaud's, and that can do similar. Sometimes, just wearing heavy socks or mittens (gloves) can make a big difference. Read around on the site, especially the "stickie" threads at the top of each section for general info on lupus and some of its symptoms.
Weight gain haunts most of us, due to the combination of the meds we take, and the fact that this shtinking stuff slows us down so much. I went from dirt bike racing one summer, to being bed-ridden days on end the next. Each year for me seems to bring some other new wierdness into mine and my family's lives. The thing to do with your doctor(s) is to start writing things down. Some folks carry one of those little notebooks in their pockets. My wife uses her iPhone, and will jot things in it, and/or do those voice recording thingies, but however you do it, "record" things that happen when they happen. Try to note times, duration, etc. Take the info with you to your next doctor's appointment, and bring it all up. I've gotten in the habit that I've got a text file on my computer, and I'll update my meds and other doctors' info and appointments, along with a "notes" section where I have that stuff written down. I also have a "surgeries" section, and I have the most recent version of that file in my wallet, in case I end up in the ER (which has happened entirely too many time the last 3 years). Other folks do similar. It's about the only way I can "remember" things at the doctor's office. My wife has started coming with me, since I'd gotten really bad about remembering things when I left the doctor's office. She will now remind me to write things down on my sheet, and she'll do notes in her phone. I'm not an old man (56), I just do NOT have the brain I had even last year at this time. If you need the doctor to explain things further, ask him/her. You pay them a wage for work, so get what you want out of the service. If the doc doesn't do better at explaining, maybe it's time to try someone new...
08-06-2012, 01:35 AM
do you have an appointment scheduled with a rhuematologist.
they are a specialist who has spent years studying our type of problems.
unfortunatelly many of them also have spent years working on a ###### attitude.
but they should be the type of doctor we see atleast once every 6 months.
they also should be able to explain in detail what is happenning with you personally.
we can talk about what is happenning to us.....
but lupus can, (and usually does), show different symptoms with each and every person.
please read a few of the older threads. they are our personal experiences with lupus.
also a good way to find a thread that is about a particular subject.....
near the top of the page, on the right.... is a search box.
play with it and see what happens.
08-06-2012, 04:17 PM
Welcome to WHL.
Autoimmune issues have slowed me down a lot. I no longer bother with making the bed, and it will often take me all day to wash, dry and put away two loads of laundry. I just now hung up my hubby's pants and shirts and put everything else on the bed. After I've built up a bit of energy, I'll go back in there and hang my clothes. I've learned to do things in bits and pieces.
I still do all of the cooking. My husband is so bad at cooking, it's best for our health that I do it. I've resigned myself to the fact that a Rachael Ray 30 minute meal will take me 90 minutes to prepare. I'll do all of the chopping, and then sit down to rest. Then I'll do a few more steps, with another rest. When Jeff calls to say that he's headed home on his bike, I know that I've got 35 minutes to finish, so I get the dish put together and time the cooking for when he arrives.
Since he's such a bad cook, Jeff long ago agreed to do the clean-up, so right after dinner, I retire to the couch.
I've learned to modify my life so that I can still do the things that I love to do, but at a much slower pace. I have mobility problems, so I use a cane and a service dog when I'm out, my rollator to help around the house and a wheelchair when we're traveling.
08-06-2012, 08:49 PM
Hi Marla' Thank you so much for your advice. I'm learning I think the hard way, I am now in bed wishing I had not done all I did today. I got into the university to see there lupus specialist on the 22 and hopefully they will calm my fears I have heard so many different things that I wish I could op on a plane and never come back but the problem is I half to take me along:-). I feel so sorry for my little 8 yr old Merlin and my husband more then me. Do you understand how I feel hugs vicky
08-07-2012, 01:49 PM
... hopefully they will calm my fears ... I feel so sorry for my little 8 yr old Merlin and my husband more then me. Do you understand how I feel ...
We all understand how you feel. I've got two boys, 10 & 12. If I'm not careful, I'll think to myself "I should be out in the backyard with them, playing baseball more" or whatever. Not gonna happen. I'll do what I can, when I can. 'Sides I can't afford to keep replacing the neighbors' windows... So we'll do 'alternative' things, like play more on the computer together, or (shudder) wash dishes together after supper... you have to take care of yourself first though, before you can take care of others. As to the "fear" thang, taint nuthin'. Sort of. While lupus isn't the death sentence it could be just 30 years ago, it's nothing to ignore either. You do want to 'keep it in a box', as my rheumy says, under control, so that its effects aren't as severe or rapid as they would be without proper medication. Unfortunately, that means doctor visits...
08-07-2012, 08:38 PM
Yes, we do understand. Lucky for me, my kids are all adults. We have a lot of Moms (and Dads, like Jmail) with young ones as members here. Kids are fairly resiliant, and they learn to deal with things like playing on the computer instead of playing baseball. I think that Merlin and your hubby will learn to be supportive of you if you are upfront with both of them and teach them about what is happening to you as you learn.
My 13 year-old grandson loves to spend time with me. He understands that Grandma runs out of energy easily. We'll plan out our time together so that we have an activity (like going to the aquarium, with him pushing me in a wheelchair) one day and the next day we'll spend being couch potatoes watching Disney shows and movies of his choice, with popcorn and lots of other snacks.
08-08-2012, 10:59 AM
Hi, I am also new to the site and am still going through the fighting process I was diagnosed 3 months ago I am a mom with 2 wonderful kids Deja 8 and Alexis 6 and a wonderful husband who is in the Army who takes great care of me. I look forward to reading the replies on your post seeing how others are managing this as I know I haven't been doing such a great job at it. Look forward to seeing more of your posts.