Posted 8/11/2007 10:33 PM (GMT -6)
Hi Susie--
I'm glad you found this forum. the people here are so wonderful and they have helped me so much and there is always someone to talk to here it seems. I understand the move. I'm very isolated, moving to where my boyfriend could work and we could afford to live, and it is extremely rural. I'm very isolated and cut off and this forum has really helped me. I can relate with the guilt and the excuses and the family just not understanding and it is so hard to explain to them how you feel, how tired you get, how painful, stiff, nauseaus, etc all the things that you can feel that get worse with activity sometimes. And the thought of running strong, being really active, for me is terrifying. But you shouldn't feel guilty, though I know sometimes we cant help how we feel, maybe not so much guilt as sadness, but either way, it's not your fault and they will come to understand with time, and this is great place to talk to people about it. Thanks for joining and I hope things work out for you and your family.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Posted 8/12/2007 6:57 AM (GMT -6)

Hi Susie and welcome to our forum. One of the most accurate and touching explanations of what it's like to live with SLE is at www.butyoudontlooksick.com. Go to this link and have your husband read the Spoon Theory.  I think almost all of us at the forum have read it, probably several times.  Once my daughter read it, she really understood what I go through every day.  Anyway, I'm glad you joined us and please let us know how you're doing.  Hugs!

 


Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone 10mg, flexeril, prozac,  celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 

Posted 8/12/2007 10:48 AM (GMT -6)
Hi Susie and welcome. As you can already see we are a very supportive and caring group of people. Living with this disease can really make a person feel isolated and alone especially if you feel like you don't have a lot of support and understanding from those around you. Even with support, there can be times of feeling very lonely.

Please do look at the site that Donna posted and read the Spoon Theory and share it with your husband and other family. It might help your husband understand things a little better.

I'm really glad you joined us and I look forward to hearing more from you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Posted 8/13/2007 1:38 AM (GMT -6)
Wow!  I just happened along my official welcome post!!  Thank you all so much!  Yes, I am SO happy to have found this forum.  Living like this alone isn't healthy in itself!  No, my husband isn't the most understanding OR helpful, plus he is younger than I as well, so maturity plays a large part in his lack of compassion on any level.  I just feel for everyone that has this stupid disease and have such a heart for everyone because I know, on some level, what they are experiencing.  I just never have been able to talk to anyone about it because I have always had to "act" well, but it has gotten too difficult and I don't care to act well because I can't and it is too dangerous to my health. Plus, when you end up in the hospital, or have a seizure, or go on prednisone, or can't get out of bed, it is hard to deny you've got a chronic illness.  So I am taking steps to seek support, talk to others, and learn ways to cope with the emotional problems as well as the physical that lupus brings on us.  I want to live, even with the pain, I want to live and I don't want to have to try and hide the pain or the fatigue so that everyone around me is happy and can do the things they want to do.  So this forum is wonderful to network with others who endure.  I admire everyone who has to deal with this disease, and just keep on keeping on! Thanks again for the wonderful welcome!!!  Susie tongue
Posted 8/13/2007 7:02 PM (GMT -6)
Hi, Susie. I'm fairly new to this forum myself. It is a great source of support and encouragement. The people here very quickly, make you feel like part of the 'family"! You can get some very helpful information here since we all can share as we learn things to help ourselves with the disease. You certainly can't get this kind of information at the doctor's office! Do you go to a local support group for people with lupus? If not, there may be one in your area. The one I attend is very helpful and supportive as well. If you're interested, you can go to www.lupus.org. Go to the Resources tab, find local resources; then search for the chapter nearest you. Welcome aboard!
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Posted 8/13/2007 7:11 PM (GMT -6)
Hi Susie, Huge HUGS and welcomes! I'm sorry I didn't post sooner. I been taking a couple of days off. I can't imagine what I can add to this post that the others have not already said. Like at my church the pastor says "The first time your a visitor after that your just home folk!" So welcome home! Looking forward to hearing more from you!
hugs
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

Posted 8/13/2007 10:46 PM (GMT -6)
Susie--
I have a younger bf as well and you are totally right about maturity, but I'm sure he, like mine, will get much better over time. sometimes I think alot of men fall in love over years, due to fear of commitment, while women fall in love more quickly. Its just a generalization based on my experience, but with the type of men I date it is true. But in some ways, I think men love more in the end, and I'm sure your guy will grow as you do and find his way. I'm glad you are here. Take care and look forward to hearing more from you!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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