View Full Version : New Life New Prayers
04-02-2008, 03:44 PM
Hi! My name is Adrienne and I was diagnosed with SLE Sept 2007.... I've been struggling every since.. I hate the medicine, I dread the vomiting... I feel so unattractive. I'm just scared... I'm glad I found this support group.
sick n tired
04-02-2008, 08:29 PM
Let me take this time to welcome you to the forum. I was diagnosed last September, also. It is the pits. I don't like how the meds make me feel, either. I have been told that it takes time to get used to the meds.
What do you take? I have had my appearance change drastically.
This forum does help. It is nice to talk to others.
I look forward to getting to know you.
04-03-2008, 06:49 AM
Thanks for the reply. I am taking methtextrate and prednisone. I have to have a kidney biospy on the 10th due to the amount of protien in urine... I was up all night due to vomiting. I am on other medications but I am at work right now and I have so much brain fog I don't have a clue what the name of the other medications are. I am so scared. I use to have beautiful skin, beautiful nails, beautiful hair, I use to love to dance, joke, play, drink, run, and just live... But now... I am know as the "sick girl". I try so hard to live my life but if I do to much, I am sick for 3 days to make up for one day of fun... People at work look at me and stare... They tell me when I am having a bad day... I was teacher of the year for my school district. But know I tend to forget my daily routines and words to say... I am always sick. My kids are so concerned that they told me they were going to find a cure for me. I am so scared.
04-03-2008, 07:07 AM
Hi AdrienneBrown :lol:
Welcome to our family where everyone understands your fear. Lupus is a chronic disease, but it is not, necessarily, a life threatening disease. There are many people who have lived 20+ years with Lupus and who have been able to manage their disease and live a relatively normal lifestyle.
Your disease is, apparently, active right now and may remain so for a while. However, with medication and lifestyle changes, you may be able to get your symptoms under control. This could take a while, but it is entirely possible.
The entire purpose of treatment for Lupus is to reduce the symptoms of active disease and to hopefully prevent further activation of the disease. It is the dream, of Lupus patients, to eventually achieve remission. In order to hopefully get to that place, you must be willing to make the appropriate lifestyle changes in order to help your body, and your medications, get your symptoms under control. All of this takes time.
Unfortunately, many of our medications (such as Methotrexate) have unpleasant side effects (like the nausea that you are experiencing). Sometimes, Methotrexate can be given intravenously. Some patients find that they can tolerate it better this way. Also, there are alternatives to Methotrexate if you find that you just are not able to continue to take it. Some of those alternatives include: azathioprine or leflunomide. I am not saying that these alternatives do not have side effects, because they do. It is just a matter of which drug you can tolerate the best.
Your fear, as I mentioned, is totally understandable and we all have felt that fear at some point in our disease. Please try not to let your fear lead to undue stress. Stress is our WORST enemy! Stress can aggravate our symptoms, making them worse; stress can bring on a flare-up and make that flare-up worse or last longer; stress makes it more difficult for our medications to work and stress makes it much easier for us to develop new symptoms. Do all that you can to lessen and/or avoid stress.
Part of what you can do is come here to us and unload all of your fears, frustrations, anxieties and anger. We are here to help you navigate through this disease and we will do that for you in any way that we can. If you have any questions, need information or just want to talk, we are here!
Peace and Blessings
sick n tired
04-03-2008, 09:54 AM
I do understand the fear. It seemed that I fell apart when the diagnosis came. My hubby wanted to know what had changed if I had it for years. I am not sure unless the flare I was in was worse than the rest.
Like Saysusie says, stress is one of the worse things for us. As a teacher with deadlines and dealing with parents that can be very laughable I know. I actually laughed at my rheumy when he told me to stay away from stress. I have many kids, most of whom are in teens and young adult. :) When dealing with kids it is hard to live a stressfree life....sigh...
Prednisone made me so sick...It also made me feel almost no pain...
Prednisone I can't live with it , can't live without it. :|
I do hope your fear abates some as you get used to the meds.
04-03-2008, 10:32 AM
Glad you found this site. Saysusie is a blessing with her forum and information. She's made a nice little home for us to share with and comfort one another. I have no experience with the medications your on. What does your doctor say about them making you sick? I'm just wondering if there is a timing or method of taking them that could lessen the effects. The plaquenil I take messes me up if I dont take it just right. Which is both pills right before bed with the right amount of food.
If I take it wrong I'm throwing up with diahrea and virtigo. If I get it right, then I'm perfectly fine the next day.
I know those medications are alot stronger than the plaquenil, but perhaps you can lessen the effects to a tollerable level.
04-03-2008, 02:35 PM
I am sorry you are having such a difficult time with the meds. I have not experienced the meds you are taking, but I think it is safe to say we all understand this difficult journey. Saysusie is a wealth of information and comfort, as is everyone on this forum. Stick with us through your difficult times so that you can share some laughter with us when you are feeling up to it.
I will keep you in my thoughts and prayers.
04-03-2008, 03:50 PM
Welcome to our family of support. You will find sympathy, empathy, concern, and it's nice to bounce problems or ideas off of someone who has been there.
Pretti in Pink
04-04-2008, 05:10 PM
Many of us have been where you are right now and we pulled through, so there is light at the end of the tunnel, just keep on pushing to get there. Yes, there may be change life alterations but there is still life and it can still be joyful, just in other ways. Coming to this forum can be one of them. This is a great group of people, that I call my cyber family and they will give you laughs along with support while providing knowledge, and understanding with a side of empathy- Now who can pass that up :roll:
Again, welcome and hang around
04-04-2008, 05:58 PM
I am glad you found us too...we are all scared to some degree. Some of us all the time, some of us, sometime. I fall in the middle. Scared to live, scared to die. I find Christian praying, Buddhism chanting and beliefs help me to be not so scared. And coming here and talking with everyone, about hopes, dreams, anger, frustration, home, spouses, children...helps a bunch.
It takes time but you will find a prescription regime that works...you may have to add, or omit as time goes on, but your body adapts. How are meds making you feel physically or is it mentally? How long has the vomiting been going on? Had you spoken to your doctor about the side effects?
Are you feeling unattractive because being sick, the medicine, weight gain. We can all relate to that. Maybe a new do..a few new outfits can perk one and takes us away from focusing on our looks too much.
I know what you mean..one day of fun, 3 days to be abused by IT. I know that routine well. I learned my lesson. I listen to my body..and not drain the life out of me in one day thought. The intense day of work, of fun is not worth what follows...pace yourself. Find your limit line...
Make a list of what you want to do today, then cut it in half and that ought to be just right...said Goldielocks...
I live in SC too, near Charleston.
You get an Oluwa head hug...squeeze...it'll be alright Adrienne...talk to us..okay..
04-08-2008, 08:52 AM
I find everyones words to be very comforting.This pass friday was almost my end... I felt so suicidal... Ready to end it all. I prayed and prayed and now... I live.. I went and got a haircut and color and am now able to want to style my hair and feel good about it... I have spoken with my doctors about my symptomns and I will be at MUSC in Charleston, SC thursday and friday having some blookd work and a kidney biopsy... I'm nervous but i just want this to be over. I have stopped with my medication because I vomit so much. I feel really tired but guess what... No more vomiting! Oh, how did the medication make me feel?? Loopy, unstable, dazed out and over all medicated... I would have diarreha and such...
04-08-2008, 05:02 PM
I am so happy you took Oluwa's advice for the new 'do. It is amazing how comforting it can be sometimes just to have someone else wash your hair. As for the meds, I will pray you find a better combination. In the meantime, I am glad you have some relief from the side effects. Best of luck on Thursday. Keep us posted...BTW, isn't haircolor one of the most divine products on the face of the planet????? :)
04-09-2008, 04:42 AM
Oluwa, My family lives in Orangeburg, SC...well really St. Matthews....
05-22-2008, 05:33 AM
Thinking of you..wondering how you are. The site was down for a few weeks, did you get lost in the change? IT happened around the 13th of April and all posts from that day went poof, gone. I am hoping you have your thread mark for email replies to say someone is talking to you...
Still enjoying the new do?
How did you tests at the MUSC on Rutlegde go on the 10th of April...hope better than mine when I was there. Who was your doctor?
Different prescriptions? Reaction the same, vomiting...gosh I can never remember the name of the drug, but it helps to prevent the vomiting that occurs from medication.
We're still here...hope to see you soon, Adrienne..
05-22-2008, 06:44 AM
I am blessed. In better spirits. I feel much better. My appt. on April 10th was scary.. Ended up staying in hospital for a week with internal bleeding at the kidney biospy spot. PainfuL!!!!! Started new meds after that. CELLCEPT. I feel much better since I started this treatment. Gained lots of weight on Prednisone and Cellcept. Biopsy was performed by Doc Anthony Joseph @ MUSC and I am seeing Ashely Beall in Rhem. @ MUSC> GOD's Gift to Man are these doctors. I am still experiencing alot of swelling, difficulty sleeping and spells of nausea BUT it is MUCH better than it was. You guys were right.... I can get through this... I just have to monitor and adjust. I ended up taking a leave of absence from my teaching duties for two weeks. I went home to my father and just rested. It's amazing what a little TLC can do for the mind, body, and soul. God Bless and continue to pray for us. Love all!
05-22-2008, 10:15 AM
I am so happy to hear that you are doing better, both physically and emotionally. Yes, having good doctors is like a blessing. And having a loving and caring family is a true blessings
It is amazing what a little rest, an elimination of stress, and the right combination of medications can do for us :lol:
I hope that you continue to feel better and that your spirits continue to soar. Yes, you can do this..with some adjustments and changes....you can do this!
Peace and Blessings
Pretti in Pink
05-22-2008, 01:53 PM
I'm glad to hear the appt. went well but more excited to hear that your spirits are lifted. That was probably some much needed rest and that two weeks really helped. God Bless you and continue to hang in there.
05-22-2008, 05:08 PM
There you are...
You stumble, I stumble...we do get through it. Though at the time it seems impossible...we always come through and amaze ourselves, we are stronger than we know..
With IT , yep...evaluate, adjust, adapt, readjust. Reinvent ourselves.
A week stay, I bet that was scary especially if they said a biopsy was routine. I have never had a kidney biopsy. I am so glad you are feeling much better. Pain is a spirit robber...don't ever feel you have to suck it up, pain. See your doctor when it becomes too high.
They have such cute tops out now that cover the extra weight we put on from our meds. So cute and complimentary to our assets. ...Have you been to JCP lately or there is a place called Ashley Stewarts nearby. They have an online store too. www.ashleystewart.com for misses...and nice too. The actual store has more. Target even has some nice things too...
They have such cute summer dresses out...with cute little jackets, sweaters to protect our arms..Tops that have empress waist lines...check it out. Sometimes we have to change styles, so bring dozens of styles in the fitting room...even things you wouldn't dream of and two sizes of each. And keep an open mind and no cutting yourself down...too tight, move on to the next size, the next outfit...
Enjoy your three day weekend...soon off for the summer? Rest does our body good...
It was really nice to see you Adrienne...hugs...hope we see more of you.