Talk about it

Two years ago I was diagnosed with Lupus. What started with what I thought were allergies just getting worse, were actually flares. There were many chest pains I thought were gas pains, many joint pain I thought were due to age, many rashes appearing then disappearing I thought were allergic reaction or heat rashes, and then comes the fatigue which I blamed on my son for keeping me up through the night or going non stop through the day. All the signs were there but I had an excuse for them all until one day at work ( I work for a company which develops therapies for Multiple Sclerosis patients) we had a guest speaker (an MS patient) who described some of the symptoms she was experiencing before she was diagnosed. Many of her symptoms sound so familiar, which I have ignored and excused for many years. That very next day I made an appt to get checked out. Initially my doctor thought it was all in my head knowing the work that I do so he asked me if I thought I had MS and kind of chuckled at it and I said it has crossed my mind but before discussing further I just let the test speak for itself. Immediately he noticed my neck and did a quick check up stating my thyroids were enlarged and so the tests began. After receiving a positive ANA testing and during our next visit, he mentioned that he bet my positive ANA was due to my thyroids. Yes I did and do have Hyperthyroidisim but I was also showing issues with Scleroderma and for a few months I was back and forth with medications and Doctors for second opinions with my Scleroderma discovery before I was diagnosed with Lupus. For some reason while researching the scleroderma, deep down inside I felt I was also battling lupus all along but until the testing proved otherwise I just followed orders by my drs. Now I have been on plaquinil for almost two years now and for the most part, it has been controlling my flares, but there are still those days where you cannot control anything and try to deal with it the best way you know how. My biggest challenge is the fatigue, I am just so tired, especially just before my menstraul. I was devastated when I first learned of my sickness (both) but after meeting so many ppl online or talking with ppl who knows someone living with lupus and hearing their stories, it has made me alot stronger and easier for me to deal with. I do get those who seem to not want to hear about it and those who make me feel as I am looking for some sort of sympathy so I refrain from talking about it. But I also hear ppl speak of ppl with ailments not realizing I am standing before them dealing with what I am dealing with yet they would never know bc I try to put a smile on my face everyday but yet I am wishing for a bed to rest as I work so hard to keep up with them. Not many at my work place know of what I am dealing with but now I feel it is time to speak out. I dont want ppl to think bc I'm not smiling I'm in a bad mood or because of my empty stares I am having trouble at home or bc I am always tired I am out partying all night dragging myself into work. I need them to know it is part of my life's struggles and just to please join me to help make the best of it After all, I do spend half my life with my colleagues...

Sorry for the story, but I just had to let it out...

Hello cyn,

Thanks for taking the time out to explain your situation and also introducing yourself to us and a good old vent with people who know what your going through does you good.

I have Scleroderma like yourself and that usually comes combined with Raynauds in a majority of people...so you need to really find out if you have Raynauds also...where you have Hyperthyroidisim i have Hypothyroidism have you been put on thyroxine to stabalize it?

Even though you spend time with your friends...you can not afford to over pace your body because all this besides work adds extra pessure to the body and joints and that's why you may ache alot more.

This discussion on fatigue will be worth reading also.

http://www.lifewithlupus.org/forum/topics/understanding-fatigue-in-lupus-and-what-can-be-done

Hugs Terri :)

DEAREST TEX 20, WHY IS IT NO ONE IS IN THE CHAT ROOM OR MAIN ROOM FOR A CHAT.

I FEEL SO ALONE RIGHT NOW, IT IS NOT A FUN THING TO FEEL. I HAVE HAD PROBLEMS FOR THE LAST 2

DAYS. YESTERDAY, STARTED WITH A MIGRAINE, NAUSEA AND SENSITIVE TO SOUND AND LIGHT. I FORCED MYSELF UP TO LET RUSH GO OUT TO POTTY.

TODAY, WORSE I COULD NOT MOVE AT ALL. IT STARTED LAST NITE AND I TOOK PAIN MED. WHICH IS VERY STRONG. I HURT SO BAD IF I SCREAMED THEY WOULD HEAR ME ALL OVER SOUTHER CALIFORNIA.

I JUST FEEL SO ALONE. LOOKING FOR PEOPLE TO JOIN IN ON A CHAT. IF ANYONE OTHER THEN ANN HAD THESE TERRIBLE EXPERIENCES!!!!

I WAS CRYING AND SAID OH DEAR GOD TAKE ME HOME. I HAD ENOUGH. ENOUGH ALREADY

RUSH WAS MOANING AS IF HE FELT THE PAIN, BELIEVE IT OR NOT????? HE IS SO GOOD HE JUST SNUGGLED UNDER MY NECK. I JUST WISH I KNEW WHAT I CAN DO TO PREVENT THIS FROM HAPPENING AGAIN.

THANKS FOR LISTENING

MICKEY AND RUSH

HELLO, THIS MIGHT SOUND CRAZY BUT I AM THINKING OF SHAVING MY HEAD. I LOST SO MUCH HAIR!!!

PLUS, I REALLY NEED TO CHAT WITH SOME OF YOU BECAUSE I AM NOT UPDATED WITH TREATMENTS.

WHEN I RAN THE LUPUS ORG. IN ONTARIO, CA. WE HAD OVER 200 PEOPLE. EVERYTIME WE HAD A MEETING SOMEONE WAS MISSING. THEY DIED.

NOW, IT IS EASY DX. I HOPE MORE OF US ARE LIVING. TREATMENT IS THE SAME. BEEN THEIR DONE THAT.

NOW IT IS PLAIN NARCOTICS FOR PAIN. MY BODY CAN NOT TAKE ANY MORE STERIODS OR CHEMO.

PLACQUENIL ALSO!! I DO NOT HEAR ANY ONE TAKING THE ANTI-MALARIA DRUG. THAT CAUSES GLAUCOMA.

EVERYTHING HAS A SIDE EFFECT IF YOU NOTICE. WE DO NOT GET AWAY WITH ANYTHING.,

THAT IS FOR SURE.

IF YOU WOULD LIKE TO COMMENT BE SURE TO LIST IT ON THE DISCUSSIONS OR TELL ME WHEN EVERYONE MEETS IN THE MAIN ROOM, OR CHAT ROOM.

THANKS

MICKEY AND RUSH

Hi Tez,

Thank you for the article. As far as my fatigue, I have all of the above, mental and physical. Lately I have tried getting back into the exercising routine but I have been taking a break bc of the fatigue. I'm sure as soon as I go through my monthly woman headache (which should be next week) I will be fine for two weeks before I am at it again LOL. I do take thyroxine daily and all has been stabalized. Thank you for the advice. My husband is my best friend and he hates to do anything without me so although we have cut down from going out as much as we use to, sometimes I force myself to attend certain gatherings or events with him just so he doesnt feel as if his life has completely changed bc of me. I was the biggest outgoing ppl person type of girl while my husband was more the humble quiet guy. After meeting him and dragging him around town with friends and family he opened up a whole lot. Now after being diagnosed I have closed myself up to the point where he has made me aware of how much I have changed and how I need to snap out of it. I guess after that speech I tried to pull myself together to get out more so that he and my son can live their lives the way I once did. I've been trying to hide my sickness and not talk about if for so long that even he has forgotten what we are dealing with. Living with Lupus really is a change of life no matter how long you've had it and you never know whatthe next day will bring. I wont sit here and just dwell on it bc I do have some amazing days which is a reminder of how great life once was and do my best to enjoy it to the fullest..

Tez_20 said:

Hello cyn,

Thanks for taking the time out to explain your situation and also introducing yourself to us and a good old vent with people who know what your going through does you good.

I have Scleroderma like yourself and that usually comes combined with Raynauds in a majority of people...so you need to really find out if you have Raynauds also...where you have Hyperthyroidisim i have Hypothyroidism have you been put on thyroxine to stabalize it?

Even though you spend time with your friends...you can not afford to over pace your body because all this besides work adds extra pessure to the body and joints and that's why you may ache alot more.

This discussion on fatigue will be worth reading also.

http://www.lifewithlupus.org/forum/topics/understanding-fatigue-in-...

Hugs Terri :)


Hi Ann,

Thank you for responding and sharing your experiences. Yes I've had the same experiences with some of my colleagues at work and believe it or not with some family and friends. I found that I have been slowly withdrawing myself from certain functions. And when I do find the strength to make my way to other gatherings, some are now curious to know how things are going when I am just a phone call away. I try and focus on my family and their well beings. I thank god for my parents, siblings and husband bc if it werent for them I do not know how I would have found the strength to through this alon, especially having an super active 4 year old whom I love to pieces lol.. My little guy keeps me going and keeps me trying to live as normal of a life as possible. Thank you for making me feel as if I am not alone.

Cyn


Ann A. said:

Dear Cyn

Thanks for sharing your story. Please prepare yourself for a continued lack of understanding even when you tell your story to your colleagues at work. People who have not experienced a chronic illness just have a difficult time "getting it." They will still be expecting you to get well to get over it. I hope that I wrong about your group. But please do not be crushed if you bare your soul to them and their eyes glaze over while you are talking and then the next day it is as if you said nothing.

When I tried to explain lupus to one of my colleagues, a woman with whom I frequently collaborated, she replied, "Well, I beat breast cancer so you can beat this." I promise you that she is a very intelligent woman. She does not get this.

Hi Ann,

That is awesome! God bless and thank you! How did you manage it with lupus? I mean its obvious we have to do what we have to do but did you have help? Did you spend alot of time in the hospital? I am just curious to prep for what I may be facing.

Cyn

Ann A. said:

Dear Cyn

You are more than welcome. When I was dx with lupus my son was an infant. He will be 47 years old next week. Hang in there!

I'm still trying to figure out why we get Lupus, but my Great Aunt Flora had it and she was always very fragile and having to wear a hat in the sun. She lived on a farm in rural Florida. My Mom later got RA and passed away from blood clots in the lungs.

My Grandfather, on my Dad's side of the family, had crippling RA and he passed away from a blood clot to the lung.

I ended up with the Epstein-Barr (chronic fatigue syndrome) virus at 25 and SLE Lupus at 40. I KNOW it must have something to do with genetics since Lupus and RA run on both sides of my family. The RA factor is positive for me, too.

My late MIL had Lupus, too, and we lost her to leukemia. If DH and I had been able to have children, there is no telling if they might have inherited the gene.

My illness didn't allow me to have children and I had to have a complete hysterectomy after having horrible periods since age 11.

I've lost a lot of friends and family over SLE....they just couldn't understand why I had to slow way down and not participate in activities. I used to be the life of the party, but had to take a disability retirement at 45 and I'm 51 now. Most days are spent at home on the PC or in bed. There are no more excuses...it is what it is. This isn't my fault. Each day is a personal battle, but I'm doing my best to spread the word about SLE and will continue until we find a cure.

I try not to think about the future....just take one day at a time since I never know how the day will be. Each day is a blessing and I hope that you find your day a blessing, too. Keep the faith...we were given a mission to help spread the word. Ignore the ignorance of those who don't have a clue about Lupus...educate them!

Lori

Hi Lori,

Thank you for sharing your story. I kind of think my extended family gets it since I am no longer around but some just seem to not want to know or hear about it. I am ok with that because I feel that this is a blessing and a curse for me. Yes I was cursed with this sickness but while I'm here and well, I am going to make sure I bring some good to the table for myself and family while I can... My life has definitely changed and I may have to slow down but I do not have to stop moving forward (well in baby steps now)lol . My job now is to leave footprints behind as I go through my journey and I will do my best to do just that... Thank you again Lori!

Cyn

Hugs Cyn....I've been through it all in my SLE journey. Benlysta killed me last year and I was on life support for 5 days. My rheumy was really excited for me to try Benlysta since I'm his most serious SLE patient and nothing else works for me. I've been on Prednisone too long and it has made me sick with serious side effects. Anyway, after 2 infusions, I developed sepsis and went into ICU. After 3 days, my lungs gave out and I died. The docs caught it in time and put me on life support...I was PISSED when I woke up...my husband knew I would be since I've been suicidal for years. I woke up with tubes in my mouth, nose, pee pee, neck, etc. It was HELL. My body was so weak that I couldn't move and I had to have nurses wipe my butt and bathe me in the bed. Talk about a rude awakening!

My point is, I was given this challenge for a reason. It isn't my decision when to leave this world. I'm supposed to fight with all I have if only to touch one person. If you are that person, then I have done my job.

Lori

Hi Lori, Wow! And here I am dwelling over my fatigue… Although its hard, I really don’t try to stress myself out and worry to much about it but with the pain and fatigue its so hard not to bc you just dont know how bad it’s going to be and how long it’s going to last. Knowing how much you’ve gone through and being able to tell your story shows great strength in you. I thank you for sharing your story, it will definitely keep me motivated to try and continue doing what I love to do while I can. Stories like yours is a reminder of how much worse are for others and how much worse things can get so take it day by day but enjoy life now especially woth my little guy and of course rest in between! Thank you Lori!

{{{{Hugs}}}}}
Cyn.

Wow! I think that you are doing the best thing -working , even when you really want to be at home! There will be many times when it just Don’t matter to you about what people think-trust me I have been there. Faith, Hope, and Prayer goes along way! Just done your best at whatever you can handle! Hang in there and know that you are not alone in this fight with Lupus…Beverly L.

Thank you Beverly! I thought of leaving work but that would probably add depression to my list so I will just try and hang in here for now, working keeps me sane i guess lol… Joining this site has already made me feel so much better! :slight_smile: