View Full Version : first time here
05-26-2008, 09:10 PM
Hello. my name is tasha. I am 36 years old and was diagnosed with sle when i was 29. I also have several other health issues for which i am also taking medicine. I take plaquenil, and prednisone. I think that my doctor needs to increase both. My favorite activities are reading, both fiction and nonfiction, writing in my journal, watching cartoons, and sports, which i rarely play,but i love to watch.movies. I prefer horror and action and sci-fi.
05-27-2008, 07:42 AM
Welcome to our family :lol: You will find that you have several members here who love Sci-Fi & Horror (myself being one of them).
Plaquenil and Prednisone are pretty much the corner stone treatment for Lupus. Lupus is a disease whose symptoms change and/or develop slowly. Your medications will, most likely, also change in response to your symptoms.
Throughout these forums, you will find that our members have provided excellent suggestions for ways to avoid flare-ups, ways to eat healthy, ways to deal with medications, etc. Everyone here is very helpful and this is a place where you will always find friends who are supportive, understanding and comforting.
I'm glad that you found us. Once again....welcome!
Peace and Blessings
05-27-2008, 03:26 PM
Welcome Tasha :)
I like sci fi fanticy, I dont do scary movies :shock: or I'ld never sleep again. Mostly I like comedies :D
I used to read alot, but now I find I have trouble focusing, and I get aggitated. Sigh.
I putt in my garden, and torment (oops) I mean play with my cat and my dog. Other than that I spend most of my time trying to keep my life in order so I can manage the house and get to work and to my appointments.
05-27-2008, 04:51 PM
What are the names or your cat and dog? I am still trying to decide between either two cats or one dog. According to my building rules. 8) I can't wait. But first i am going back home for the fourth of july. By the time i come back, i hope that by then i will have decided. :D
05-27-2008, 05:49 PM
Well I got my dog first, he's a german short haired pointer. I named him Schultz for Hogan's Hero's. He's a beautiful dog but not very bright :D
I got my cat 2 yrs ago, he's jet black and I called him Hogan :D he's best buds with the dog, as a matter of fact they are curled up together sleeping at the moment.
I wanted to call him Willya.... come here Willya, stop that Willya heehee, but Hogan seemed to fit him better.
Pretti in Pink
05-27-2008, 06:45 PM
I am 36 too. You have joined a great cyber family. Glad to have you, chat w/ you later...
05-27-2008, 06:48 PM
Hi, Tasha...glad you found your way here. It's a great 'family' and you'll get lots of support here.
Let us know what you decide....dog or cat! We've always had both - but now just 2 kitties and we dog sit our son's English Setter a lot. One thing you should know....doctors say changing cat litter is NOT the best thing for people with a compromised immune system...very 'germy.' My hubby has that lovely job these days. (....the lupus is just a smoke screen to get out of changing the litter...heh, heh, heh :twisted: ) You may need to take extra precautions if you go the kitty route!
05-27-2008, 07:24 PM
I want to thank everyone for such a great welcome. I feel welcomed here. This does sound like a nice, big family. I never thought about joining a group for lupus, because i thought it was better to keep to myself. But ever since i moved into my apartment building i have been a lot a very good people. I have met two other women who have lupus as well and one of them had told me about this group. I am really glad that i joined. Thanks again.
05-29-2008, 07:38 AM
You are most welcome and we are very glad that you are here. The woman who told you about this group..is she a family member here also?
05-29-2008, 09:09 AM
Yes she is a member of this group, but she says that doesn't chat. She also likes it a lot which is why she recommended this site to me. I find that there are a lot of information here that i can pass on to family and friends. :)
I'm 40, and was diagnosed with SLE when I was 36. I'm a sci-fi fan, and avid reader myself. I have three cats. Sasha, Sophie, and Big Fuzzy. Sasha was a stray I rescued, Big Fuzzy is one of her Kittens, who is now bigger than her mother. Sophie came from the Humane Society. Sasha and Fuzzy are tuxedo cats, and Sophie is a Russian Blue. Their antics keep my spirits up, and bring alot of enjoyment to my life. This is really a great website, with plenty of understanding, caring people. I'm glad you found us.
05-29-2008, 08:51 PM
Another reason that i joined this group was the fact that i have other health issues as well. I am diabetic, i have high blood pressure, anemic, and i have celiac disease, which i am still trying to adjust to. I am trying to find out how all health issues are going to effect me as time goes on.
05-30-2008, 12:50 PM
Welcoming you with open arms...
I don't have any personal info on the other issues you have coupled with IT..I have other crud though...
I have both a dog and a cat...a fat cat. A huge cat, whom I love. My dog is a Jack Russell and my cat I think has a bit or Persian and Siamese, plus a breed that has only 3 inches legs. The poor girl was ripped off. She looks like a personal size watermelon with four toothpicks for legs and a tennis ball for a head...
Her name is Pookie...Pookie Monster and Riley Mildred is the Jack.
Like Jody, my husband does the kitty box. He assumed the chore completely when we were attempting to have children. I run from the dust, when he is the garage...
I know peat moss aggravates my IT...
I too like horror and scifi flicks...
Chat about, search the forum...engage..see you on the board...
Keep looking for your wellness.
05-30-2008, 12:54 PM
there are several members here who also suffer from the other ailments that you've described. Feel free to ask any question about any of them and I am sure that someone will research an answer for you and/or share their experiences with you.
I am very happy that you found us :-)
Peace and Blessings
05-30-2008, 05:00 PM
My sister has lupus and ceiliacs as well. She's been feeling much better eversince she switched to the ceiliac diet. The Ceiliac society puts out some very helpful shopping guides for grocery stores and restaurants.
05-30-2008, 06:06 PM
Here's my biggest issue. Both lupus and celiac disease compromise my immune system. Which is worse? Add my high blood pressure and diabetes and i feel like a ticking time bomb. Some days like today it is very very hard to be optimistic. On top of that i just ate something i shouldn't have ate. A big mac. I already suffer from major depression, so my health issues do not help. I was suppose to go this support group that i have on Fridays. I missed the van so i guess i won't be going. It's already more then half over. Thanks for listening. :cry:
05-30-2008, 06:15 PM
Awww hugs Tasha,
Look, you've been hit with bad news on top of bad news. Give yourself time to adjust; you will adjust.
My sis was very very ill for months....then she got diagnosed with the ceiliacs. At first she was very overwhelmed with all the information and the shear amout of things that contained gluetin (spelling?)
but she's got it figured out now and she feels great. You will too. Hugs.
05-30-2008, 06:18 PM
Thank you. Sometimes like today. I feel very alone and overwhelmed. I guess that's it for now. Thank you to everyone for their support.
05-30-2008, 08:06 PM
I have had Lupus for a while but never had insurance to get treated ,But things have looked up for me in that aspect and I am currently seeing a Dr in the Lupus Research dept , Which has its ups and downs , she is never around. she is always out on conferences and out of the country, Its so hard to find a Doctor where I am at and then I find one that is good but never there !
Its so depressing no matter how I look at it
Has anyone applied for SSI because of there Lupus ?
05-30-2008, 09:54 PM
When i applied for ssi years ago. Lupus was a factor , but it wasn;t the main problem with me. I have been suffering with major depression since i was 14. I tried to take my own life then. At eighteen i started to harm myself. That's what they looked at. Plus the fact that i couldn't work. I started hurting myself at work. I believe that they look for physical disabilities as well as emotional ones.
05-31-2008, 01:46 AM
Do you have a Ceiliac's support office near you? That's a wonderful resourse. They can provide you with a grocery shopping guide that gets updated often, and they have lists of common every day items that contain wheat products that you wouldn't think to check. Plus other helpful tips.
For example. Colgate toothpaste is a BIG no no. They use flour as a filler in the paste. You also have to be careful with sandwich meat. Flour is used when it is packaged. Not sure why but it is. So the meat is like coated in flour. You would know to just look at it.
Some pills use flour as filler as well. You can ask your pharmasist about any medications you are using.
Look around you for Ceilac bakeries. I live in a small city so I was surprised to find we have several Ceiliac bakeries as well as several restaurants that are either all ceiliac menues or partial menues.
I took my sister out for her 50th birthday to a very nice restaurant with out telling her it was 100% ceiliac friendly. When the waitress came over my sis asked what she could have on the menu and the waitress grinned at her and said what ever you see on the menu you can have, its ALL for you.
She ate like lumberjack hahahaha we had a great time and go back there often.
It's all a matter of time to adjust. My sister was so sick, I was very worried I might lose her. She lost so much weight it was scarey, she was basicly starving to death be cause she could obsorbe an nutrician.
She did a complete turn around once she got all the flour and wheat out of her life.
Even for the lupus it's important to eat healthy, exercise and get proper rest. It's amazing what taking care of your will do.
I'm not even close to 100% but compaired to where I was a yr ago I'm thrilled. When this all started I stopped working out cause I was in so much pain and so swollen that I though working out was aggrivating it.
I was very very wrong. I started working out again and it's helped my joints emmensly. K I'm babbling now :lol:
Good luck and let us know how things are going :)
05-31-2008, 08:27 AM
well I do suffer from depression also, my problems is my Lupus Doctor will not see anything other than Lupus . She thinks Fibro is a joke and will not even discuss it and I have every sympton of that also. My primary care Doctor ....Well I will be seeing him soon and talk to him about the Fibro.Its so hard when they said get rest don't be stressed but yet I am stressed because of the pain and being so tired. I am a single mom and not able to work but a hour or so a day.I know you all know what I am saying .I just get so angry. And I know I am not alone but sometimes I just feel that way .
Tasha thanks so much for answering me.and My prayers are with you! you also have alot to deal with
05-31-2008, 09:14 AM
SITC is right, their are so many tasteful foods out there for Celiacs. I have a problem with some wheat products, but I am not a Celiac. I just would get a bloated gut and run about and jabber like I was inebriated. Exhausted, airhead...an intolerance.
Are you a cutter when you self injure? Do you still...have you sought or found out how it came to be. Sometimes knowing what incite it as we dig through out minds isn't as important as finding a resolution to stop any self abuse. Mentally or physically. I think I know somewhat of the pain you are going through. Being a recovered anorexic/bulimic, it pretty much evolves, comes to be ...through the same path as self-injurer...
I am truly sorry you found yourself in a place at 14 to try to end your precious life...how are you doing on the emotional front of that?
I hope you know you are not alone, alone in life, alone with your diseases, your depression. We are here, do you have family and friends near. One on one face to face support...
Have you had your medications, supplements if any evaluated recently to see if they increase your depression. Possible any interactions. You'd be surprised how many drugs we take that increased depression, mood swings, suicide thoughts..or the combination can create it..or increase the effects or lessen the effects of another...check it out...
I know life is hard, we lose our stride, we lose hope...we wander aimlessly...but there is help, there are books, people, me, us...that can make your journey easier, to change it...to even liking it daily...
Life happens, good and bad..it is how we perceive it that can make a whole lot of difference in our life.
Big Mac....Celiac..depression..sometimes we have to weigh things out and make ourselves more important. More important than a Big Mac on our taste buds. You are important, your health is important..
Turn the kaleidescope a bit and see life for you in a different way. Change is hard, but the change will make you feel better.
Like a bulimic..the days I would stuff, feel in control thinking ah this food would ease my emotions, ease the stress...but in the end it did nothing but create depression, stress, guilt and shame...
Bulimic lied, never made me feel better, just like a Big Mac...Okay, maybe a second when the fat raised the serotonin levels but what followed for you, ugh, gut, sick..damaging your intestines..and guilt probably, I shouldn't have..
Tough words, maybe..but I want you to know you are more important than a sandwich. Please take care of you, like you would care for me, care for another...
I care..head hugs,
I have other health issues too. I'm dealing with a recent diagnosis of Multiple Sclerosis, on top of the SLE I've been dealing with for a few years now. I have been fighting depression as well. You're right, it is so hard to be optomistic. I too, tried to hurt myself, permanently. I had no hope after my SLE diagnosis. The woman who I thought loved me, left. My dream of my own business had just been realized, and it was taken away before I could even begin to enjoy it. The majority of my friends, just stopped calling, and coming around. I felt as though people only liked me, or wanted to be around me for what I could offer them in a material way. Since I could no longer offer such things, I no longer had friends. It was an awful time in my life. I did things to myself, tried to end my life, and I hurt many good, caring people in the process. Today, yes, I have two incurable (for now) autoimmune diseases, and problems with depression that can be very persistent. But, a few days ago, I steered, I piloted, a sailboat in the middle of the ocean. I had porpoises swimming along side. My father was with me on our "fixer upper" boat we've been trying to get seaworthy for a couple of years now. I felt alive again. And I still feel it today, right now. I have to start a new round of IV Methylprednisolinone treatments this coming week. The side effects will not be pleasant. But those side effects cannot take away what I did the other day. Yes, I lost much of what I dreamed of in life, a wife, a family, a business of my own. But, I've always dreamed of sailing a boat, on the ocean, with no land in sight, and nothing but the wind, and I did it. I did it in the midst of a battle for my health like I've never seen before. What I am saying is, you still have good days ahead of you. You can still realize dreams, they may be smaller than your big plan for your life, but they are still dreams. At this point, for me, a small achievement is far better than nothing at all. Have hope Tasha. There are hard times ahead for both of us, but there are good days, and little victories along the way that will keep us going, and give us a reason to live.
Hang in there, and go easy on yourself,
Susan, that is a very cool thing you did for your sister. I started reading about Celiacs after you mentioned it to me awhile back. The waitress telling your sis that the whole menu is for her, very cool. I'd eat like a lumberjack too!
05-31-2008, 12:50 PM
There seems to be more and more people possitive for Ceiliacs, Halifax is not that big of a city so word of mouth is still effective. We've been hearing about quite a few restaurants here that are Ceiliac friendly. There's one called Sweet Basil, it has an online menu with clearly marked foods that are for Ceiliac and I must say YUM! Think my next dinner out with sis will be to Sweet Basil's.
Bangor is not a big city either. Plenty of word of mouth here too. I've heard of Sweet Basil. I think there may be one in Portland. BTW, the record store had some Jesse Cook cd's! I bought the one called Frontiers. Gonna unplug the phone, turn down the lights, and listen to it tonight.
05-31-2008, 02:20 PM
:) enjoy! That's the album I have as well. If you got the double one there's a dvd in it with a live performance. I went to see him play when he was here.
All I can say is WOW, the violenist is from nova scotia. There's alot of tallent that records and travels with him. It was a completely entertaining show.