View Full Version : need advice on so many changes, body, mind, love life

11-08-2007, 10:01 PM
well, i guess i just need to kind of talk about a few things that i have a hard time dealing with since getting sick. I was diagnosed with lupus in august after being very ill for about 9 months. one thing that is difficult lately is the change in my body. with all the meds, prednisone, plaquenil and methotrexate i have gained about 25lbs. i feel so vain talking about this stuff. people keep telling me i am being stupid to worry about it but it is very hard to deal with.
before getting sick i ran in races, went to the gym and was strong, fit and healthy. now my body is lumpy, swollen, squishy and i have only one pair of pants that fit me at all. i wear them everywhere, to work, going out, around the house, everywhere. it sucks. but i don't have money to spend on a new wardrobe and now my tops are not fitting very well either. it is getting to the point where i am buying only very necessary items but i just can't bring myself to buy pants in such a larger size. it is like i am paralyzed. i feel so yucky inside and then feel like i look yucky.
worse still is that i feel unatractive to my live-in boyrfriend and keep getting worried he is cheating on me. i feel like recently he is cheking out younger women (i am only 26) who are more fit and i know he misses my healthier, thinner body. to top it off i am now losing my hair, something i never had a problem with before. i think it is the methotrexate. it is like my whole body is betraying me. i don't know what to do to solve this image problem i am having. i know i was attractive before but now i just don't feel secure. it is a tragic feeling and no matter how many people tell me it should be on the bottom of my priority list, i feel like it has started to bother me more than the pain i feel.
has this ever happened to people? am i being vain? is it horrible to grieve for my healthier body and to not feel pretty anymore? i just don't know these days. i feel crazy sometimes. i also wonder if anyone here has experience with a husband, partner or boyfriend who cheated? sometimes i find stuff on my boyfriend's computer that makes me uncomfortable, even though it is not physical cheating, the mental cheating or online flirting with attractive women makes me feel cheated on. what can i do? any advice from anyone who has felt or experienced this would be a great help and comfort to me. thank you all for reading this and offering your help and support as always. :?

11-08-2007, 11:59 PM
Hi cranbrycloud,

I am sorry you are having such a hard time with meds, weight, relationship issues. Honestly, I think it is normal to worry. Stop worrying, go to Wal-Mart and/or Goodwill and buy yourself another pair of pants and a couple of blouses. You will feel much better about yourself. You don't have to spend a lot of money and you have some new clothes that now fit you.

I understand your frustration of not being able to work out. I used to work out 3 hours per day at the Gym and swim laps in the Summer in our pool. I would run 5 miles easily per day. After being diagnosed, I would attempt to run on my treadmill at home, joint pain, etc., was not worth it. I am resigned to walking; it's not running but I am still getting exercise. It's hard learning to accept that we can't physically do what we used to do. Now, I rarely get on my treadmill. I really need to if just for 20 mins a day. What about a 20 minute walk per day? It's a start, see how you feel afterwards and then take it from there.

If you are uncomfortable with what you are finding on your boyfriend's computer, maybe talk with him and express how uncomfortable you feel. Honesty is always best for your peace of mind and health. You are in a place where you need as much positive support as possible. I don't have any personal experience with flirting or cheating spouses. My husband and I have always been honest with each other and have been happily married for almost 20 years. I am not saying it is easy; but it is worth fighting for.

I am sending you gentle hugs and you are in my thoughts.

Take care,


11-09-2007, 11:16 AM
Faith said it so very wonderfully! I'm sending gentle hugs as well.

I'm a lot older than you (I'm 55), but I remember the adjustment when I was diagnosed as well. It takes time, and patience (Yes DANG IT LORD, WILL YOU PLEASE HURRY UP AND GRANT ME PATIENCE!!!! )

I still go to the gym - my workout routine has changed a LOT since lupus. I used to do at least an hour and a half a day, 5 days a week. Now? my goal is 4 days a week, for at least 1/2 hour each time. Sometimes that 1/2 hour is spent on the treadmill at 2.5 MPH. Or the recumbent bicycle, slowly. Weights have dropped a lot - but I still do them. While you may need some time away, it may not be forever, but when you do go back it may be at a different level.

Talk to your boyfriend, express your caring for him and your frustration with your situation and your fears. You two live together for a reason - I'm sure there's love there. Together you two can make it through. Maybe take him along when you hit WalMart and buy a couple new slacks and tops. Let him weigh in on what looks good.

If you're working, or if he's working, find out if there is an Employee Assistance Program (EAP) available - they're a wonderful resource to talk with, supportive, helpful, and able to help you find a way to make it through each day. If not, ask your doctor to recommend someone - perhaps s/he has someone in the office who is there for support.

Many many gentle hugs dear - and warm thoughts.

11-09-2007, 11:21 AM
I am right there too. I live in Southern California and image is everything. Or so I thought. I was always a perfect size 2. My hair was full and shiny. My skin was flawless. I exercised daily and took a 3 mile walk every night. No one believed I had a 10 year old grandson. Paradise.

Then I got sick. I gained 45 lbs in 9 months. My hair is falling out in massive quantities. You can see my scalp. I get rashes and I itch when I wear makeup. I can no longer work out, though I try to walk once a week.

I refused to buy new clothes too. I didn't have the money. I felt like a failure. Like my body betrayed me. But my husband insisted I buy something comfortable. So I bought one pair of jeans, now a size 12! OK, they ARE comfortable, but my self image is still bad.

I am learning that I have this disease, it does not have me. I will deny it the privilege of making me crumble. I may be larger now, but I can still wear nice clothes, even if I have to shop at Goodwill. I will make the best of my thinning hair using scarfs, etc. I will use only hypoallergenic makeup when I feel up to wearing makeup. I will walk in the evening, if I can. If I can't, I will give myself permission to stay home. I will give myself permission to grieve for the person I once was because that is a normal, human response to loss.

I am learning to accept the new me, and it has been a long and lonely road. Nobody else knows how we feel living with this disease that robs us of who we were, and giving us this broken person instead. But the point is, WE ARE LIVING. And it is up to each one of us to make it the best life we can. Stick around here. We are here for each other, good days and bad days. We celebrate the good things life gives us, and comfort those having bad times.

11-09-2007, 11:44 AM
I so know how you feel. I don't even take meds, except neproxan, and have same problems. I used to be smaller, strong like the guys, very active. Now I'm always tired, thinning hair, weight gain, always in pain, weak feeling. Thats the most common of my problems. I didn't want to buy larger clothes either, but I did. I still have my smaller clothes in hope that I can eventually get back in them. I bought cloth pants and larger shirts and dresses. Wasn't to thrilled, but comfy and happy.

On the subject of your boyfriend, I know how you feel. No one knows, kept it between my hubby and me. I'll confide in you here since know one here knows me personally. My hubby did cheat a few years back. He says because I was always sick. At least it wasn't from the way I looked (lol). I was going to go more into detail, but still to painful. We talked it out, he said it crushed him to see the pain it caused to me. I still have trust issues, but in the begining of all relationships we all have to learn trust. I just had to do it again. We've been together for over 15 years. For me I decided to work it out, we had been married so long I wasn't ready to give it up. Are you ready to give your relationship up? Or are you willing to work at it. All relationships take work. Unfair, but seems to take more work when ones ill. Take care of yourself first. Relationship second.

I try also to walk on my tredmill at least 20 min. a day. I do stretch my muscles every morning though. Just try to exercise as often as you can. Thats what I was told here, and it does make me feel better. Try it out, maybe you'll feel better about yourself.

I hope I have been some help to you. I don't mind listening if you wish to talk, cry, vent, or whatever you need. Keep your head up, everyone gets in slump moods. I've had a few myself. Good Luck sweety.

Pretti in Pink
11-09-2007, 05:20 PM

I too echo your feelings, as many others. I have gained weight along with dress/pants sizes and purchsing a larger size ( as hard as it maybe) is better for your self worth. Trying to get into clothes that are too little and make you feel uncomfortable only adds external fuel to an already blazing interal battle.

I believe you should talk to your boyfriend about how he feels because sometimes when we feel bad about ourselves we assume others do as well and that may not be the case. If he loves you unconditionally, he loves you regardless.

In another post, I believe the one with the subject, Embarrassing question for women, Oluwa gave me some good tips on food, exercise, and self worth. So NO, you are not alone this is a recurring subject as many of us are going or have been through this.

11-10-2007, 04:34 PM
Hi Ladies,

I couldn't help myself, I just HAD to jump into this conversation!! I've been away for awhile and in the midst of changing doctors, working, etc.

For the newbies who don't know my story, I'll share a snapshot for you. I always took such pride in staying in shape, working out, my favorite form of exercise believe it or not used to be dancing....my girlfriends and I would go out a couple nights a week and dance like we had nowhere else to go and nothing else to do (smile). I've worked for CEO's most of my life, so looking professional, dressing nice and staying in shape were "expected".

About three years ago my life bomb went off and my world changed in literally an instant. I suffered a heart attack, stroke, kidney failure....and a multitude of "backlash" symptoms as well. My hair fell out, my skin looked awful, started turning black in places, I went into the deepest depression you can imagine. I couldn't grasp what in the world was happening and all at once?? It truly became more than I could handle.

I have to say, I learned life's hardest lessons through those difficult times. I finally understood that "pretty is - as pretty does"; when my circle of friends disappeared and my circle of doctors grew and when my faith in friends had drawn to a close; God found me in the midst of my pain and He sent into my life people who mattered to me most when I felt so lost. I didn't know who I was, if I wasn't running someone else's life/business....and I found my self worth in how good I looked and felt. Now I see that God needed to take away the distractions of life and allow me the opportunity to see that "what I did in this life" will never be as important as "why I did what I did" in this life. I learned to start leaving the house with my big bald head and SMILE when I felt like crying. When I hurt so bad that walking wasn't possible, I filled my bathtub and soaked away the tears (and my body felt better too).

I have finally been able to be thankful for Lupus. It has taught me lessons about me and others that I would never have taken the time to learn - except that I needed to be knocked out of my own way to finally get the "lessons" of life. Security in anything is difficult at best with lupus - your life, your mind, your body, your career, your relationships ALL are inclusive of dealing and living with lupus. I found that the more I included those who mattered most to me - the better and stronger our friendships became. Romantically - takes a courageous soul to sail through these waters. You not only see your body changing, there are days you don't feel pretty anymore, etc. I SAY TO YOU.....YOU'RE HEART REALLY IS WHAT MAKES YOU BEAUTIFUL....confront your loved one - express your concerns, fears, hopes and goals in this new "altered" life. I've come to consider it my "life makeover"...my new "norms" change all the time (and accepting that brings such peace).

If you need to morn the life you once lived; do so - BUT DON'T STOP LIVING THE LIFE YOU HAVE TODAY! Just redefine your "satisfactory" and make yourself fall in love with breathing everyday....that's what I do anyway. I consider it the grandest prize on earth when I wake up every morning, and I can smell the rain - feel my blanket brushed up against my skin....and my puppy snuggled next to my feet....when I open my eyes I laugh at the thought that TODAY I GET TO CHOOSE ...JOY over pain....TODAY....I CHOOSE FORGIVENESS OVER ANGER...TODAY I CHOOSE TO MAKE SOMEONE ELSE SMILE FOR A CHANGE....TODAY, I WILL GET DRESSED, THANK GOD FOR THE AIR I BREATHE...AND FOR EVERY BLESSING THAT COMES MY WAY.....TODAY!

That's my two cents worth (smile).

Much love,

11-10-2007, 06:20 PM
to everyone, warm hugs from the Philippines.

even if i'm at the other side of the globe, i can't help but nod my head and agree to everyone who posted their insights in this thread.

i also felt the anxiety over the physical changes that have been happening in the past months.

thank you for sharing your thoughts. now i know that i am not really alone in this struggle. thank you for making me realize that there is a choice we can make.

i wish wellness for everyone.

11-10-2007, 06:35 PM
Just wanted to say, love your post browneyedgirl. Great view on life.

11-10-2007, 07:39 PM
Browneyed girl;
Your response was beautiful. You have said everything that I wanted to say (and so much more eloquently and with so much of your heart in there). Thank you for everything.
As you've seen, you can always come here to share your feelings and someone (like Browneyed girl, Faith, Hatlady, Cheryl, and Prettyinpink) will always be here to give you comfort and support!
Your beauty is in your heart and those who truly matter recognize and acknowledge that beauty!

Peace and Blessings

11-11-2007, 07:35 AM
hello everyone,

i just got in today. i've stumbled into this great site through google. i had lupus. i was diagnosed last 2001, when i was just 22 years old. now, im 28 and would you believed i'm into remission for 2 years now. praise god!

but when i was diagnosed with lupus, i went through what you are going through now my dear Cranbrycloud. i felt so ugly as if i'm a monster. i got rashes all over my body and my face. my hair kept on falling that i almost went bald. at that time, i also have a boyfriend.

its difficult to have a relationship when you are fighting the evils of lupus. i know. but ironically, life with lupus is bearable if you have someone to share your sufferings with, right ?

talk it out. be vocal with your insecurities with your boyfriend. i guarantee you it will help you a lot. you have to communicate. that's the key!

you know what ? my boyfriend then when i have lupus, is my husband now. he was the one who motivates me when everything is tough! just one look at me and he knows what i was going through. yet, that was not an instant thing. we have work on that by expressing myself to him and him telling me what to do.

it works.

now, we are a family. we have a beautiful daughter.

11-11-2007, 04:33 PM
Thanks for the kind words - I have found so much comfort here; sharing my thoughts is just a small part of giving back to this wonderful healing site - a place where we ALL can gain wisdom.

Much love,

11-11-2007, 06:32 PM
You are all such an inspiration - I'm always so touched by the heartfelt posts here - sharing (and caring) so much. I hope you can feel the love, Cranbycloud. What you're going through is so very, very hard. Everyone here has lost, and it's natural to grieve when you lose something. Browneyedgirl (and all of the others!) gave you such wonderful advice. I hope you find the help you need in their words.


11-13-2007, 11:25 PM
wow, i have just returned to see if there were any replies and was so surprised, pleased and comforted to hear all these stories. i have been looking for a safe place such as this where i can receive the words i need. everyone who has shared here has made me realize what is important. i am still struggling but it feels good to know there are other people who understnad what i feel and fear.
today was a hard day, but the weekend went well so i need to focus on that i think. it is funny how one day i will feel a certain way about a subject and the next day it is completely different. thanks to all :)

11-14-2007, 06:45 AM
Wow, I've been away from the board for a few days, been so busy with work and visiting my mother!

Browneyedgirl, your post was so moving - it takes time, doesn't it, to learn the gifts this condition brings with it. You described it all so well...

This condition has been a gift in many ways - notice I no longer call lupus a disease but a condition - it is part of my life, I try to always be at ease - not dis-eased - with it. To me, it has given the gift of understanding - of myself and others. Of realizing that sometimes I just can't, but instead I need to lean on someone else to do things I used to do.

Of realizing that others face struggles as well - when someone comes into my office complaining that a coworker is parking in the handicapped space and "with those high heels, she CAN"t be handicapped" I can say "Some handicaps aren't as visible." She doesn't know that coworker has MS, and as with lupus, her energy is limited. She needs that parking space to conserve enough energy - enough spoons - to make it through a work day.

I take time now to enjoy the garden - weeds and all. Kinda like life - the good with the bad.

Hugs to all, this post has been so helpful to me, and I hope to you as well!

11-14-2007, 06:16 PM
Welcome back ladies Crnbry and Hatlady!!!!

You know, I was just thinking today......God delivered to Saysuzie His precious Lauri...and because of Lauri, we have woven a wonderful web of new loved lupie friends (wow).

Today, I want to thank Suzie-Q for bringing to us the hope of her daughter, the love of her life....and for bringing us all together. Lauri's mission on earth was so much bigger than I think her own mom and dad could have ever imagined; and thank God they had the courage to step forward so that we could fall into the arms of understanding here at this website.

Sending you lots of love,