So Frustrated w/SLE!

Susie Baumgarten · Posted: Mon Jun 03, 2002 5:03 am Post subject: So Frustrated w/SLE!

Dear All:

I am in desparate need of some answers in dealing with the pain some of the other symptoms associated with SLE. I have absolutely had it! I'm sure you all can relate.

I was dx with SLE about 2 years ago and have had 3 Rheumatologists. The Rheumy I have now is so wonderful and understanding, and I feel fortunate to have found her. I live in Northern Virginia so I have a wealth of information within the area and am well-informed. I am also a breast cancer survivor of 7-1/2 years and have a wonderful online support group for that, but the lupus is a totally different ballgame!

I am searching for a way to go into remission and have been having adverse side effects from the Plaquenil. I was smoking marijuana for dealing with the pain but stopped because my husband was threatening to take the children away from me. This was about 2 months ago. Long story. Big time marital probs which have attributed to my 6 flare-ups within the past 1-1/2 years. I am so sick. I am down to 113 lbs., have no appetite, severe joint and muscle pain, throwing up, get confused easily -- needless to say, my lupus is still active. I am just so tired of it.

I am also scheduled to have a hysterectomy next Tuesday, but this has no affiliation with the lupus whatsoever just another medical inconvenience.

Has anyone ever used the Marijuana Pill? I am going to do everything I can in my power to get Marijuana legallized for medicinal purposes. It is so ridiculous!! Sorry to be so straight forward, but I'm looking for some answers. I can't function on the prescribed pain meds while looking after my children.

Looking forward to hearing from you. Hugs.

Love -- Susie

Saysusie · Posted: Sat Apr 05, 2003 10:01 am Post subject:

Susie - I am sorry to hear of your health and your personal problems. I have never tried the M.j. pill and I know of no one who has - sorry.
I am currently in remission - but I couldn't begin to tell you why. The plaquenil was like a God-send for me as was the prednisone. I believe that the biggest factor in my ability to achieve remission was the elimination of my biggest stressors (like my job!).
You may find that, until you are able to reduce the stressors in your life, you may have a very difficult time achieving remission.
I hope that you find a way to do this - discuss it with your doctor!
In the meantime, try to find ways to get some peace - take time for yourself; quiet, meditation time. If you just need to talk and/or to vent, we are here for you.
Take Care
Peace and Blessings
Saysusie

tropically · Tadpole Joined: 28 Oct 2003 Posts: 18

Saysusie
I undestand that less stress will help reduce lupus. My wife seems not to understand the fact. She works as a computer quality engineer. and it seems that stress is part of her job. I can't persuade her to quit as she is reluctant. any ideas as to how to approach.

thanks
tropically

Saysusie · Posted: Thu Nov 06, 2003 11:03 pm Post subject:

Topically;
That is a hard one!!! I did not quit my job until after the passing of my daughter. I wish that I had done it sooner, but somehow we seem to think that our worth and value are wrapped up in our jobs. It is very hard to convince someone that being successful, dependable, respected and promoted are truly not the most important goals that we should have (in my opinion). To me, it is so much more important to be loving, compassionate, loyal, giving, embracing, forgiving, accepting and encouraging to our loved ones and to those who need us (which, most of the time, does not include co-workers!).
I, too, have a friend whose job is almost causing her to have a nervous breakdown. But, her position is a very impressive one and her income is equally impressive. So, it is very hard for her to even consider leaving her job. Even in the interest of her own physical and mental well being. She is afraid of being "no one". That is such an injustice to the spirit that guides us all...to the magnificence of what we are. But, like I said, these are just my opinions.
My only suggestion is that you try, as hard as you can, to convince your wife of the fact that she is worthy, she is valued, she is cherished and she has so much more to offer this world than she even realizes. Her job is just a small reflection of what she has to offer or what she can accomplish. Then, support her in whatever decision she makes.
Best of Luck To You Both Wink

Saysusie

tropically · Tadpole Joined: 28 Oct 2003 Posts: 18

trhanks susie. just one thing I would like to particpate more on the board and want to encourage others to particpate more. Let me know if you have any suggestions.

Saysusie · Posted: Mon Nov 10, 2003 8:28 am Post subject:

Tropically;
I am so glad that you would like to participate more and I will accept any assistance that you want to provide. You can share your story as a caretaker of a LUPUS patient and as a spouse of a LUPUS patient. I think that it is very important for loved-ones to be educated about this disease and all of its symptoms. So many LUPUS sufferers feel terribly lonely and alone because their loved-ones do not understand the disease and, therefore, minimize their symptoms and suffering. Perhaps you can be a voice for and to the family and loved- ones of Lupus sufferers.
Otherwise, just participating with us in this forum is enough and I truly thank you for that!!!

Saysusie

epyron · Posted: Tue Sep 27, 2005 12:30 pm Post subject:

Susie Baumgarten

I need some serious help. I read that you have been to 3 rheumatologists. I live in gainesville also and am looking to find a good dr. that will take time to listen and really help me. I am in the process of being diagnosed and am getting worse day after day and am at the breaking point. I am so FRUSTRATED!! Please help me!!!! I just turned 25 and feel like im 80!!! HELP!!!!
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Thanks for all the support and help!!
One day at a time...
Elise Pyron

catlady4520 · Posted: Fri Sep 30, 2005 5:18 pm Post subject: SLE

I've been going to a rheumatologist since 2001 and up until this year, only had UCTD. In April started having seizures and have since been diagnosed with SLE of the brain.

I know exactly what you mean about the pain, frustration and the confusion. I thought I was losing my mind...having the lupus fog...forgot where I would put stuff down and couldn't find it again. Also the other day i took a wrong turn and got lost...I've lived here for 10 yrs!

Just know that all of us are here for you! Hope your rheumatologist can help...has she suggested Cytoxan???
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Catlady4520

honeyshell69 · Posted: Tue Nov 29, 2005 2:43 pm Post subject:

IM sorry your husband just dont seem to get that when you feel like this, you will do just about anything to get a breck from the pain, i also smoke pot when i can find it, it helps so many things eating, pain, mental wellbeing, I too will do everthing in my poewr to get it legal, it sure would be nice to cut down on all these man made pills and all there sideaffects. the only side affect is eatting everything in sight.lol alittle humur i know very little...lol hang in there and dont let people who dont understand bring you down................. hopes and wishes. your new pal michelle Very Happy

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michelle