Please welcome emusedone (Susie)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/10/2007 1:46 PM (GMT -7)   
Welcome Susie!! I pulled your reply from the other post in case it got overlooked. I want to welcome you to HealingWell and the Lupus forum.

Take Care

emusedone said...
Hi, I just joined. I have Lupus sle and was doing a google search on guilt. Feeling guilty all the time because I have to makeup excuses why i can't do this or that, and finally telling my husband that I don't feel well!!! And then all the fallout from that. It was good to read your posts here. I am not the only one that feels these symptoms and feels the guilt and wishes my life was like it used to be. Now I can bookmark this and read your posts. I don't belong to any support groups and I'm alone most of the time in a city I moved to for my husband. So I needed to find some sort of support or forum to answer my questions or help me. Thank you all!! Susie

"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


http://www.healingwell.com/donate


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/10/2007 3:53 PM (GMT -7)   
Hi Susie,

Welcome to the forum. This place is a wonderful support group and you don't even have to leave home to make friends with a group of folks who are going through the same thing you are. We can all identify with feelings of guilt!

It sounds like your husband doesn't really understand what you're going through, and being alone in a new city must be so hard. I've lived in my city for over thirty years, and yet lupus has made me feel so very isolated so I imagine it must be doubly hard for you. It took me a long time to get my husband to really understand what I go through and I finally printed off a thread from this forum that dealt with the awful fatigue we get. When he read several pages of everyones comments he finally got it. But we have to revisit the whole topic from time to time.

Let us know more about you. I hope you'll become part of our little family and that you'll make some new friends here who will help you feel more connected to people who care.

Take care,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 8/11/2007 7:56 AM (GMT -7)   
Hi Susie,
   Welcome to the forum. I'm sure you will find this forum very supportive and helpful. There are some of the most warm, caring people here that will help you in anyway possible.
   Please take care and I hope things get better for you soon. Keep us updated and you will be in my thoughts and prayers.
                                                          Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/11/2007 8:33 PM (GMT -7)   
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


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 8/12/2007 4:57 AM (GMT -7)   

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
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/12/2007 8:48 AM (GMT -7)   
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



emusedone
New Member


Date Joined Aug 2007
Total Posts : 3
   Posted 8/12/2007 11:38 PM (GMT -7)   
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

sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/13/2007 5:02 PM (GMT -7)   
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/13/2007 5:11 PM (GMT -7)   
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
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/13/2007 8:46 PM (GMT -7)   
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

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 11:16 PM (GMT -7)
There are a total of 2,736,222 posts in 301,362 threads.
View Active Threads


Who's Online
This forum has 151452 registered members. Please welcome our newest member, sarajseri.
215 Guest(s), 4 Registered Member(s) are currently online.  Details
bluelyme, geop, Girlie, jrpsf


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer