Just a little over a month ago, I was diagnosed with Lupus. I'm still a newleywed, I rarely went to a doctor much before. My life was pretty normal, I had pain but nothing new. I had been living with pain in my right foot, and we couldn't figure out why. Finally it got so bad, my FP sent me for an MRI and I went to an orthopedic surgeon and found out I had tendonitis and a ruptured tendon. Then my blood work came back and my FP sent me to a Rheumatologist for elevated ANA levels. Initially, I was given a diagnosis of RA and sent for more lab work. On my second visit, my Rheumotologist said one of the labs for Lupus just said "High" like off the charts kind of high. Sometimes when I read about Lupus as a rare disease l have to stop and remind myself - I have a rare disease. Two months ago, I didn't take any pills, now I fill a weekly pill reminder with morning and evening pills. I get advice to "rest up" this weekend and my feet will be fine. Co-workers mean well, but they don't understand. Sometimes I just have to accept life on life's terms and be willing to adjust to my new life.
I’ve been diagnosed and on treatment since 1990. I’ve been thru the coworkers being downright mean thinking I just wanted attention. Last year I got fired for being sick. Boss actually asked if I was gonna die so he could know if he needed to hire someone else. Adjustments are constant with this disease and each new one is difficult to accept at times. Acceptance is a constant struggle but having others that endure the same illness to talk to is the 1st step toward that goal. I’m here to help anyone who needs me. Good luck and hugs to you!
Sheri
Thanks for sharing this. WOW - what an inconsiderate boss you had. I can imagine a boss saying something like that, because I've had a boss call me into his office with my direct supervisor and lecture me about my excessive doctor visits and that I was abusing the system. I'm just taking it one day at a time. I had a really good day yesterday - virtually pain free. Today is a different story. I didn't sleep well, and I'm feeling dizzy and headachy and my pain is back. Adjusting to the unpredictability of this is tough. Now that I have a name for my pain, I can look back at my past and understand why and when I had my first flare. I developed pneumonia days after my mother died. I lost alot of hair, which I attributed to the pneumonia and stress, I never in my wildest dreams thought I had anything more serious.
Dear Trisha,
Acceptnace can be a tough road for us, especially if we go in search of the 'quick fix', that illusion usually does not last long. For such a young gal, you have incredible wisdom, it will serve you well in coping with a chronic disease. If you have a tough day accepting it, don't be too hard on yourself, it happens, but I surely commend you for your courage.
Wishing you WELL,
SK
Hello Trisha,
Sorry to hear what you've got and only being young but the disease and issues it causes don't go away...unless you enter into remission and then it's a great bonus.
The only way to deal with it is to except it, you may find it hard at times but never give in as depression can over ride we quickly with the symptoms....you will need to slow down your daily routine in order to help your body.
I dearly understand what your going through and i was born with Lupus and it's caused me to have seizures and my life plus work stopped at 18 i had no choice...the form i worked for kept my job open for 6mths, i attended back and on that first day back i broke down and symptoms kicked in and "BANG" i was finished and i'm 43.
My life span even to this day as been nothing but illness but with good determination and staying strong will help you a great deal.
((A large hug to you)) Terri xxx
SK and Terri
Thanks for the compliments, and I wish I were a young gal again. I just turned 50, and was just diagnosed. Looking back, I understand why I had pneumonia days after my mother died, and then I lost alot of hair, which I attributed to the pneumonia and stress. I've had chronic fatigue for several years, I've lost count how long. I guess this just caught me off guard, to be diagnosed now. I've probably had flares, but didn't really know that's what it was and nothing compared to what you've gone through Terri. I'm trying to learn about this illness, and my husband and I are just taking it one day at a time. We've discussed a change in job or reduced hours. Its a blow to my ego to have to quit now, when I wasn't really mentally ready. But with the heat this summer has brought, I know that I can't handle working another summer at my current job. I could probably suffer through it, but I don't want to risk my future health.
You are both inspirational to me and I thank you.
Trisha
Hello Trisha,
I thought you was young because of your Avatar you've added.lol
You most likely had the pneumonia because of the lupus, i myself have had it 3 times and pleurisy twice and it causes the fatigue and hairloss, mine kept coming out that much while trying to grow it i've kept it at the skin head now.
Trisha i felt symptoms from when i was 5yrs old besides have congestion on the lungs and my parents nearly lost me and i just growed up being freezing cold so that would be my Raynauds plus i used to dribble bad from my mouth from a child and still do it and i must have had the sjogrens then also.
That's all you can both do trisha is take it one step at a time and with the threads which go up besides contact with member's you'll learn alot...even changing jobs you need one where there's less hours you not constantley on your feet all day plus where your working a steady pace, nothing which is mad because all the factor's i've pointed out will just ware you down.
Trisha your welcome from both me and Susan and we'll help best we can anytime.
Love Terri xxx
I thought she was young from her photo! Bet I made your day again Trisha! Since I blew it with the 'young gal', I'll rephrase if you like and tell you that you seem like a 'very together lady'!
Yep, I knew it the first one was the best!
Good day to you!
SK
Hello sunrisetrisha, how are you doing today? I understnd how you feel about your life changing. Your lucky enough to continue working. I have been on disability for 3 years now. I loved my job and was devistated when I had to stop working. I've past the "feeling sorry for myself" stage and try to take one day at a time. I hate the fact that I am on 7 different meds. I miss the old me. I hae an 8 month old grandaugter who keps me going. Do you have kids? Keep your chin up, we are all here to support you!
Hi Renaic,
I haven't had the pleasure of talking to you yet, When you talked about grandkids, I had to jump in, just had my great grandson who is 2 for 2 days, with the help of my Mom and husband, he is just the sweetest little guy, begs and bawls to come to be with us!! "Eat" and "outside" are the most popular requests! Also have a 9 year old grandson, and two granddaughters, one a Senior in HS, and the othere in her 20's (darn 'fog)!
They keep my chin up!
I also know about not being able to work anymore, breaks your heart, BUT through years of personal struggle and growth, I have come to this place, 'perhaps I was meant to have this time with my grandkids' and that is keeping me going.
Of course all of you get some of that credit too! Lovely to talk with you!
SK
Terri
Wow, that's a big compliment. The Avatar is a a photo from last year on my wedding day. The happiest day of my life. I was blessed with a second chance at love. I've probably had symptons for at least 10 years, that's when I noticed the fatigue. I just blamed the fatigue due to my daughter's hyperactivity. She's 17 now, but is still such a bundle of energy. Toughest thing for me to have to tell her I can't go to the mall with her, my feet just can't handle it right now. I really enjoy all your posts!
Trisha
Tez_20 said:
Hello Trisha,
I thought you was young because of your Avatar you've added.lol
You most likely had the pneumonia because of the lupus, i myself have had it 3 times and pleurisy twice and it causes the fatigue and hairloss, mine kept coming out that much while trying to grow it i've kept it at the skin head now.
Trisha i felt symptoms from when i was 5yrs old besides have congestion on the lungs and my parents nearly lost me and i just growed up being freezing cold so that would be my Raynauds plus i used to dribble bad from my mouth from a child and still do it and i must have had the sjogrens then also.
That's all you can both do trisha is take it one step at a time and with the threads which go up besides contact with member's you'll learn alot...even changing jobs you need one where there's less hours you not constantley on your feet all day plus where your working a steady pace, nothing which is mad because all the factor's i've pointed out will just ware you down.
Trisha your welcome from both me and Susan and we'll help best we can anytime.
Love Terri xxx
Sk,
Yes, you did make my day. And no you didn't blow it, I appreciate it so much. Some days I feel so old, when I have trouble getting up. I think I'm more stiff and sore at the end of the day, than I am first thing in the morning. Is that weird? My husband is so considerate and always offers his hand to help me up when we are out somewhere. Sometimes such a simple gesture means so much.
Trisha
SK said:
I thought she was young from her photo! Bet I made your day again Trisha! Since I blew it with the 'young gal', I'll rephrase if you like and tell you that you seem like a 'very together lady'!
Yep, I knew it the first one was the best!
Good day to you!
SK
Dear Trisha,
My tough time is after being in one postition for a while, especially in the morning, if I am lucky enough to sleep, having to get down on the floor can be a disaster as far as getting up, I have nearly pulled down large heavy furniture pieces getting up. But stiff is bad no matter what time of day it comes to call!
Your husband sounds like a Prince! Hang on to him, girl! Usually all of that wears off too soon!
Always a pleasure to hear from you,
SK
Sk,
My husband always opens doors for me, and always offers his arm to me while we are walking anywhere. We've been together off and on for 4 yrs, and it hasn't changed. In fact I think he's more aware of my needs now. He's a keeper.
I've tried to soak in the bathtub a few times to ease my joints after a long day, but I have trouble getting out of the tub. I enjoy a hot shower, it really helps. Sleep is inconsistent for me, I have good days and bad days. I'm really looking forward to meeting with Vocational Rehabilitation next week. My counselor suggested it for me, he said they work with training and placing disabled people in new jobs. I have been underemployed for several years, and I want to keep working, but I can't keep it up on my feet so much. If they can't help me, then it would be time to consider disability.
Trisha
Hello Trisha,
Well if that was you last year and just gone 50 my god your looking good on it mate, as you only look in your 20s....come on woman let us all know what your secret is concerning lupus and stopping years younger.lol....you look fab for your age.
I was blessed with a second chance like yourself and this month we've been married 7yrs....yes some things do make you look at other issues such as your daughter but it's to what extent they get that's when you realize it's something else.
Even though you can't go to the mall with her, she most likely understands and thank you about my posts.
I hope your ok and you have a better day with your feet.
((All my love to you)) Terri xxx
I hear your heart and can only imagine how hard it is to adjust to marriage and lupu together. But you have a great attitude and I note you are busy encouraging others on thissite. You have what it takes to "survive." I have found a long time ago, some will never understand our illnesses. I'm not sure I do, but it is for us to accept and never give up and hope that something is around the corner that will help. am a 'granny' and well meaning friends try to talk me into accepting, giving up, and expect the worse. Well I will never give up hope! That is what allows us to awake in the morning and able to get up and face the day. You are young...and have even more years to hope for real help and a cure. Stay strong. I will pray for strength for you to deal with all the adversities you will face in the couse of a day. Please keep in touch. I care about you!
Faye
Terri,
I can't take any credit, its all in the genes. My mother looked amazing until the day she died. No one ever believed she was 74.
Congrats to you on your anniversary!! Hope you are well, take care of yourself.
Trisha
Tez_20 said:
Hello Trisha,
Well if that was you last year and just gone 50 my god your looking good on it mate, as you only look in your 20s....come on woman let us all know what your secret is concerning lupus and stopping years younger.lol....you look fab for your age.
I was blessed with a second chance like yourself and this month we've been married 7yrs....yes some things do make you look at other issues such as your daughter but it's to what extent they get that's when you realize it's something else.
Even though you can't go to the mall with her, she most likely understands and thank you about my posts.
I hope your ok and you have a better day with your feet.
((All my love to you)) Terri xxx
Faye,
Thanks for the encouragement. I am with you, I'm not sure I understand Lupus either. Sometimes I don't understand how or why. I have faith that carries me through each day and I expect the best. I guess that's what sets us apart, from those that don't understand our illness - our acceptance.
Trisha
Faye said:
I hear your heart and can only imagine how hard it is to adjust to marriage and lupu together. But you have a great attitude and I note you are busy encouraging others on thissite. You have what it takes to "survive." I have found a long time ago, some will never understand our illnesses. I'm not sure I do, but it is for us to accept and never give up and hope that something is around the corner that will help. am a 'granny' and well meaning friends try to talk me into accepting, giving up, and expect the worse. Well I will never give up hope! That is what allows us to awake in the morning and able to get up and face the day. You are young...and have even more years to hope for real help and a cure. Stay strong. I will pray for strength for you to deal with all the adversities you will face in the couse of a day. Please keep in touch. I care about you!
Faye
Hi Trisha,
It's nice when you carry god genes regarding your mom looking well for her age but you do look young.
Thank you for the best wishes on my anniversary.
All my love Terri xxx
Dear Trisha
I too am an older woman of 49 I was diagnosed with lupus at 29 but I had multiple symptoms before that going back to my teens. unexplained fevers and the like. If no one has suggested it start keeping a symptom diary and when you get test results and discuss treatment with your Rhumy write it all down. take the diary with you to every doctor you see because sometimes doctors dont share wells with others even if you tell them its OK. As for the hair loss I feel that pain too. I snake out our drains on a monthly basis because of the hair going down the drain. Nioxin shampoo helps to slow it down after a few weeks give it a try. If you need to bend an ear just let me know. I do understand.
sunrisetrisha said:
SK and Terri
Thanks for the compliments, and I wish I were a young gal again. I just turned 50, and was just diagnosed. Looking back, I understand why I had pneumonia days after my mother died, and then I lost alot of hair, which I attributed to the pneumonia and stress. I've had chronic fatigue for several years, I've lost count how long. I guess this just caught me off guard, to be diagnosed now. I've probably had flares, but didn't really know that's what it was and nothing compared to what you've gone through Terri. I'm trying to learn about this illness, and my husband and I are just taking it one day at a time. We've discussed a change in job or reduced hours. Its a blow to my ego to have to quit now, when I wasn't really mentally ready. But with the heat this summer has brought, I know that I can't handle working another summer at my current job. I could probably suffer through it, but I don't want to risk my future health.
You are both inspirational to me and I thank you.
Trisha