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dsunshine
04-12-2009, 02:10 PM
Hello Everyone!!!
I just joined at the advisement of my therapist. I was diagnosed with Lupus in early November 2008 after experiencing a sore throat and swollen feet and hands, which at first I was told I had post virul arthritis. The pain was un bearable and I was walking around grunting from pain and looking like the Michelin Man. Finally, after a rush to the emergency room and lab test I was told I had Lupus. I cried initially and uncontrollably as I felt like I was handed a death sentence. Then I thought Lupus not terminal cancer and I can beat and will beat this.
I was off of work for 4 weeks. Constant doctor visits, in office treatments for my flare ups, more visits to walgreens pharmacy than I can count or remember. I couldn't squeeze toothpaste, take the cap off of my deorderant, comb/brush my hair or get on and off the toilet by myself. At the time I thought I have a wonderful boyfriend who did initially help take care of me but after two years of being together he left me in December 2008. He said he lost hisself in our relationship and needed to regroup. This was devastating and just a traumatic to deal with as Lupus. Coupled together with Lupus flare-ups, which were new to me and having someone I love abandon me only made my symptons worse.
Here I am at 35 thinking I was ready to have a baby, be married and really get this part of my life started there were other plans for me. I cried everyday/night from the pain emotionally I go through and from the physicall pain I feel from flare ups.
The good news is that initially I was on 30mg of Predinsone but I am down to 5mg. I recently joined the gym and I work out when I feel up to it and I don't push my body. I have learned my mind says I can do it but some times my body says not today or take it easy.
I started seeing a therapist to help me cope and deal with Lupus and my break-up. During the past 2 years I have undergone: being laid off from my job making over $60K a year as an escrow officer (aug. 2007) living on unemployment for 8 months, temping, going back to school to complete my degree (still working on it) filing bankruptcy in july 2008, getting hired on from my temp. position as an escrow assistant and taking more than a $20k pay cut BUT I HAVE HEALTH INSURANCE, and then being diagnosed with Lupus in Nov. 2008.
Yes, I have undergone a lot but as I testified in church I HAVE LUPUS IT DOES NOT HAVE ME!!!
I have lost more thna 30lbs and who knows how many inches but I eat chicken, fish, turkey and lots of veggies/fruits/water everyday. Junk food is no longer an option.
During the last week I was written up at work for a few slip ups as well as my absences/early leaves. I called out sick about 8 times in 2009 due to flare ups and I left work early due to follow up appoint. to check to make sure my liver/kidneys are still doing well. Lupus has not attacked any major orgins. My employer/human resources were notified of my illness as soon as I was diagnosed and when I received the write up mentioning my abscences I was hurt and felt discrimenated against. Yes, my job is trying to fire me. As muchs as I don't want to be in escrow any longer I need the health insurance.
Living with Lupus has been a whirlwind and all I want is to be healthy, have children and live my life!!!

mountaindreamer
04-12-2009, 04:07 PM
Hi dsunshine,

I send to you my sincerest welcome to our little family of the sky. I sit here unable to convey the words that respectively reply to your plight. You have been overwhelmed over and over for the past two years, and yet you still manage the strength to reach out to us. You are facing the downward spiral that a lupus diagnosis creates like so many of our members, and you will find comfort and strength from sharing stories with us. You will also learn coping techniques that will enable you to live your own life with lupus dragging behind you, yes, but at least this hateful disease won't be leading you around.

We have members who have lost their jobs, lost their homes, lost their partners, and some who almost lost their lives. We are all still here, though "normal" and "goals/ambitions" have changed. We help each other through this process, and we congratulate each other as we overcome obstacles one by one. I am so glad that you decided to join this group.....please jump in to any coversation that you want to.

I am sure that many members will be along very soon, and they will share common stories, and they will shower you with open arms. As a matter of fact, you will probably find a little laugh in some of the welcomes, just as your little "Michelin Man" brought a giggle out of me, because it is so true, we have all been there and it was nice to laugh about it for a moment....so thank you for my Easter giggle.

Welcome again, we are like Waffle House....we are always open.

tasha
04-12-2009, 07:56 PM
Welcome to our forums dsunshine! I'm glad you found us :)

you have definitely been through a lot and you are such an inspiration for coming through everything with flying colors and for continuing the fight! way to go! you will find that a lot of people on these forums have been through many hardships as well and can really relate to you and give you a cyber shoulder to learn on.

i ended a relationship about a month ago myself, so i feel your pain. even though it was my decision, it's been hard dealing with both the lupus and the romantic loss. but hopefully everything happens for a reason, right? i'm glad you haven't given up and you seem to be a very positive person!

i'm hoping i can lose 30lbs and get down to only 5mg of prednisone too!

maguadalupe
04-12-2009, 10:49 PM
Hi,
I totally understand i have 4 kids they were very young when they found out i have lupus i got so sick that i lost my job ,at that time my oldest child was 10 yrs. she help me in the morning to get dress and help me take a baths and shower know she is 20 yrs old . just take one day at time , Just eat right make sure you rest and don't stress so much becuase lupus feeds on stress we our all here for you

maria

Angel Oliver
04-13-2009, 12:01 PM
Just to say hello and welcome and im sending you gentle hugs.We understand you.Keep posting and we will help you trough some of lifes difficulties. Glad you found us.

love
Angel.xxx

dsunshine
04-13-2009, 01:03 PM
Thank you all for responding and welcoming me. Reading some of the entries/stories on not just this site but on the internet just breaks my heart. I have never been such a cry baby now commericials I would normally laugh at I find myself crying. SUCKS!!! I have good days and bad days like all of you but what I long for is being healthy and being my usual fun self. I just wanted to put in a quick reply and say thank you. I will enter more later.

pamjw
04-13-2009, 01:44 PM
You found a good place to learn and share.
I am still new here but it helps reading about other people, makes you feel not so alone.
Welcome
Pam

Rastagirl
04-13-2009, 03:29 PM
Thank you all for responding and welcoming me. Reading some of the entries/stories on not just this site but on the internet just breaks my heart. I have never been such a cry baby now commericials I would normally laugh at I find myself crying. SUCKS!!! I have good days and bad days like all of you but what I long for is being healthy and being my usual fun self. I just wanted to put in a quick reply and say thank you. I will enter more later.

Hello dsunshine and Welcome.... :wavey:

You've really been through a tough time...I'm so sorry....this is not a fun road to travel. But you don't have to go it alone...we all understand, better than anyone else, exactly what the pain, and fear, and frustration is like. How lonely it can feel.

I, too, have felt like you when I read all the stories of people battling this everyday. It's overwhelming to hear about all the pain and suffering and sadness this brings. And I'm willing to bet every single person with Lupus has deeply longed for the day when they have good health again, and they can be that fun, happy person they were before all this. That's got to be a universal thought for all of us.

I'm glad to hear you're not doing this all by yourself, that you're talking with a therapist. That can be a very positive thing when you're dealing with such a unpredictable illness. I spent many years after I was first diagnosed, thinking that it wouldn't do me any good trying to tell a stranger what was going on in my head....what my feelings were about Lupus. I just kept it to myself and thought I could figure it out on my own. When I finally made my way to a therapist, it was life changing for me and really made a huge difference in my health. I found a place where I was safe to say anything, or ask anything, and there was no judgement, only understanding and kindness and solutions. It was the best thing I did for my health and sanity to deal with my anger about being sick. I applaud you for seeking help.

I'm sending you caring HUGS :hug: to let you know you've found a place with people that care about you.

Fondly,

Lori :heart:

dsunshine
04-13-2009, 05:32 PM
I am having a great day physically and emotionally. I took an up hill walk with a co-worker during lunch (had on my visor at the discretion of my grandmother when I am in the sun) My joints are feeling great but I know I have to be careful not to over due it when I am feeling this way. Emotionally cause I feel like I have found a pot of gold at the end of the rainbow thanks to you all responding to me. I really appreciate it and it warms my heart. I was feeling like the new kid at school having Lupus for a while and it is comforting knowing you all have what I do and understand what I go through. I hate feeling like people pity me or feel bad. I hate when I explain things like not being able to squeeze the toothpaste or take the cap off the deorderant and my friends/family try to reason with me about it. The bottom line is things such as everyday routine things are a challenge to Lupus patients when we are having a flare up or recovering from a flare up. I walked around looking like Amy Winehouse about the head because I couldn't comb/brush/wash my hair. I am someone that never leaves the house without taking a shower/combing/just overall grooming. YES...that all went out the window at the height of me being sick and off of work for 4 weeks. I went to the doctor looking just as crazy as I felt.
I also have to say that a lot of days I am so angry...angry that I am the only one in my family with it and my great grandmother's who did have it have passed away about 15-20 years ago. Angry cause I want to wear my regular clothes and shoes...not tennis shoes with insoles or Uggs. I really want to wear all my cute 3 1/2 inch heels and clothes...new clothes since I have lost weight/inches. Angry cause I want to eat thick cut pork Farmer John Bacon everyday and eggs but I am on a low sodium NO TASTE DIET...YUK. I crave salt/spicey so instead I treat myself to sushi on the weekends and I have low sodium soy sauce and wasabi!!! I don't eat sweets anymore either...just fruit fruit and more fruit. Highlight of my day is a granola bar which I am too happy and excited to eat.
Wow...one day I will reflect back on this and laugh/cry/smile and thank God as I do now for blessing me enough to spare my life and for allowing me to have a different out look on life all around.

I will say this in closing...Having Lupus has pointed out who my REAL friends are and who really cares/loves me in my family. It pointed out that the man I was/am in love with and planned to have children with and marry was not at all the man I want to come home to at all. When the going got ruff...he got going and good riddens and good bye to him. He missed out on me healing, getting better, droppin weight and looking even better than I did 2 years ago when we met. He missed out on my small victories I have everyday...he missed out on this journey and just how great I really am!!!
HEY...I gotta believe it before anyone else will right.

TobyJug
04-14-2009, 04:18 AM
just wanted to say welcome...

Saysusie
04-14-2009, 01:39 PM
Hello DSunshine;
I am Saysuse - Moderator/Administrator of this beautiful global family:yes: I want to welcome you with much understanding. I have always advocated that, with this disease, it is just as important that we take care of our mental health as we do our physical health. Loneliness and depression abound with Lupus patients (and justifiably so!). So, we must make sure that we are getting treatment for both and I am glad to hear that you are.

Like you, I eat only fish and fowl (no four-legged animals)..I eat very few (almost none) sweets, lots and lots of fresh fruit and fresh vegetables. However, I do crave a big fat juicy hamburger once in a while. No, I don't fall off of the wagon..I get myself a big fat juicy veggie-burger, with soy cheese...that actually takes care of my craving.
When I do want to eat meat, I usually eat ground turkey, turkey sausage, and turkey bacon. I can't tell the difference in taste.

I had thyroid cancer and had to go on a no sodium diet..talk about restrictive! There is sodium in almost every single thing that we eat. But, I found that most health food stores have so many wonderful alternatives so that we can still enjoy the things that we like, without consuming what we should not have. Take a leisurely stroll through your local health food store, just to see what they offer. You might be very pleasantly surprised!

You are in the right place to always be with people who are understanding, informative, supportive, and comforting! I hope that you stay for a while, make yourself at home and let us be your friends!!

Peace and Blessings
Namaste
Saysusie

dsunshine
04-14-2009, 02:19 PM
Thank you for your reply. I do have the cravings and they usually come when I am at work and my co-workers have ordered food for lunch. Last week I think someone ordered a burger with chilli and cheese and like a hound dog I smelled and and I wanted to slap whoever ordered it. I had to walk out of the office and take a break. I know what I shouldn't have but I would like to indulge every once in a while. Instead, I indulge in sushi on the weekends…my vice!
Thank you for the support with the therapist. My family (mom) was mainly against it. I am black(African-American) and I think a lot of times African-American's believe it going to church/praying and I am all for it as I pray all day and talk to God BUT given everything I have gone through in the last 2 years I thought it best to talk to a therapist and deal with all these issues so that in 5 years when I feel everything is going great I don't have a nervous break down.
I am going through so much and I love this site. I love that I can relate to the stories, questions, and responses. I am addicted to this site now and not that it is a great thing but I was feeling like only African-Americans/Asians get this disease and from what I see this is simply not true. I don't like that any of us have it but I don't feel so picked on.
I am currently battling my job with a write up and feeling isolated and ignored and that is okay cause I know God has the last say and he will protect me. I just don't care for the eerieness in the office and the fact that almost all of my work has been taken from me and I am bored. I don't want to be on the internet either to give them anymore reasons to try to terminate me so I browse this site to help pass the time but I collapse it and write my replies.
People can/are so cruel and I find out everyday how cruel people are being at work. One thing I can/will say is that the same supervisor that wrote me up for my absences/early leaves due to Lupus had a flare up yesterday due to eating nuts. He has gout!!! Talk about Karma!!! I smiled a little inside and it really made my Monday. All I could think was Thank you Lord when he decided to talk to me after ignoring me for more than a week to disclose why he was limping!
Thanks for the reply and for allowing me to vent!

dsunshine
04-14-2009, 03:17 PM
Hi Tasha!
Thank you for the kind words. I guess I wish I was the one who did the breaking up as he did cheat on repeatedly and all I could think was work it out as he did put a promise ring on my finger and told me repeatedly that he wanted and would marry me. He said we were going to have children. Needless to say he sold me a dream and I bought it...Stupid me! Live and learn. Now my heart/mind/body are so guarded!
The weight loss was a surprise to me. I was bed ridden the 4 weeks I was off of work and all I remember was pain and wanting to be out of pain. I was told by my rhematologist that I need to loose weight but never how much or how to go about it. My mom and grandmother took care of me and I belive that their love/support/help aided in me going from 30mg to 5mg of predinsone along with preparing my food for breakfast/lunch/dinner was the key. Due to my grandmother taking care of my greatgrandmother, who had Lupus, my grandmother knew exactly what needed to be done and she did it. I am truely lucky and blessed to have the mother and grandmother I have!
Now that I feel a since of independence again...driving, walking, working out I am able to talk about Lupus and not be so sensitive or angry. I still get angry and undergo more emotions than I thought a human could have. BUT I am here and alive and like I said I HAVE LUPUS it doesn't have me. I beat this and I plan to be in remission before summer!!!

Ria0331
04-15-2009, 12:24 PM
Hi i'm Maria G. and I just want to say welcome to the family. I have found that this forum isn't just a group of people that want to share their stories but we have become a family. Our individual families are wonderful and supportaive but when it comes to understanding what we are feeling or dealing with only other people with the same or similar issues can fully relate and give valueable info. I hope you start to feel a little better and are able to find the love and support that we are all here to give you very rewarding. I know I have.

Saysusie
04-16-2009, 08:47 AM
DSunshine;
I am, also, African-American and you know I understand you when you say that many African-Americans believe that we do not need therapy; that we need only to read the Bible and pray. When we lost our daughter, we went to a support group at a church. We were told that all we needed to do was read the Bible, everything would be healed if we read the Bible.
Well, after just losing our child, we knew that we needed emotional help to guide us through the stages of our loss. I believe in the Bible, truly, and it has been valuable in my life. But, I needed a different kind of help at that time, I needed someone who could talk to me about the specific things that were occurring with me emotionally....I needed a therapist.
I remained in intensive therapy for three years (going 1-2 times per week) and I continue with my therapy (now only once per month or quarterly..depending upon my need). Lupus, as a disease, causes chemical imbalances that leads to depression. Also, having the disease causes depression...so it is important that we have treatment that understands these issues and addresses them specifically! That is our emotional guidance (treatment)!
IN ADDITION .....we turn to our Bible to give us spiritual guidance. The combination of medical treatment, emotional treatment, and spiritual guidance should help us to navigate the many facets of this disease! Also, remember that we are ALL here for you whenever you need us..You Are Never Alone!!

Peace and Blessings
Namaste
Saysusie

Oluwa
04-29-2009, 05:52 AM
Hi DSunshine...Love the moniker..

Welcoming you with open arms. Hugs...squeeze...

Regarding your work writes up have you contacted your EEOC representative at your workplace? If not, do so..today.

Here is a link..follow the yellow brick road...http://www.eeoc.gov/types/ada.html

If you think you have been discriminated against in employment on the basis of disability after July 26, 1992, you should contact the U.S. Equal Employment Opportunity Commission. A charge of discrimination generally must be filed within 180 days of the alleged discrimination. You may have up to 300 days to file a charge if there is a State or local law that provides relief for discrimination on the basis of disability. However, to protect your rights, it is best to contact EEOC promptly if discrimination is suspected.
You may file a charge of discrimination on the basis of disability by contacting any EEOC field office, located in cities throughout the United States. If you have been discriminated against, you are entitled to a remedy that will place you in the position you would have been in if the discrimination had never occurred. You may be entitled to hiring, promotion, reinstatement, back pay, or reasonable accommodation, including reassignment. You may also be entitled to attorneys fees.
While the EEOC can only process ADA charges based on actions occurring on or after July 26, 1992, you may already be protected by State or local laws or by other current federal laws. EEOC field offices can refer you to the agencies that enforce those laws.
To contact the EEOC, look in your telephone directory under "U.S. Government." For information and instructions on reaching your local office, call:


(800) 669-4000 (Voice)
(800) 669-6820 (TDD)
(In the Washington, D.C. 202 Area Code, call 202-663-4900 (voice) or 202-663-4494 (TDD).)

No matter how old we are, no matter what work environment times people act just like they are still in elementary. There are always a bully, people out for themselves...I am sorry you have encountered that at your place of employment.

When you are up against the employer, supervisor...fellow employees will either run and hide or side with the employer. You may find one alliance, but more than likely you will go it alone. And that is okay, you have us.

I wouldn't speak to anyone at your worksite about your write ups, just speak with the EEOC department...and keep a journal of all remarks, disparging... that anyone has said to you, employer or employee...date and times..

And note any cases where they are treating your differently than an another in the same circumstances..like has anyone else been wrote up for excess absences?

As for your supervisor he shouldn't be eating nuts if he a gout...contains purine.

Happy days...there are many to come...
Hugs.
Love,
Oluwa