Thanks for the recommendation of the symptons journal - I think its a great idea! I'm trying to get myself organized, I used to be so organized LOL.
Trisha
Julie said:
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.
i completely understand, i too was newly married and working full time when i was diagnosed. People mean well, but no they really do not understand. My husband still doesn't understand and it has been two years since my diagnosis.
Things are still crazy for me. I was forced to quit my job, drop out nursing school and sit in the house all day like a hermit. I was once working full time, going to school full time, and taking care of my husband and son. So it sucks! now i can barely cary a laundry basket up stairs. And my meds....i cant even count them! i know exactly what you are going through and my heart goes out to you...i'd say stay strong, but its hard. Good luck OH and i was fired because i was taken to the ER from work and used all of my sick time and they fired me the day before i could have claimed disability...what goes around comes around i hope...
I think sometimes other people are uncomfortable since they don't understand. Its like telling an alcholic - well just stop drinking. If it were that simple- they would. On Wednesday, it was pretty hot at work, and my co-worker asked if I was ok and she said I looked a little pale. (She is one of the few at work who I confided in) She didn't offer any suggestions or try to 'heal' me, just noticed and asked. I said I was ok, and I felt ok other than a little headache. Sometimes that means alot.
I strongly believe in what goes around, comes around. I know how you feel, I was fired a week before I had a surgery - like its not enough stress already. The employer doesn't exist anymore. My son has made the comment that alot the places I worked at aren't around anymore - and he said because they couldn't survive without me. Isn't that sweet? lol.
RD13 said:
i completely understand, i too was newly married and working full time when i was diagnosed. People mean well, but no they really do not understand. My husband still doesn't understand and it has been two years since my diagnosis.
Things are still crazy for me. I was forced to quit my job, drop out nursing school and sit in the house all day like a hermit. I was once working full time, going to school full time, and taking care of my husband and son. So it sucks! now i can barely cary a laundry basket up stairs. And my meds....i cant even count them! i know exactly what you are going through and my heart goes out to you...i'd say stay strong, but its hard. Good luck OH and i was fired because i was taken to the ER from work and used all of my sick time and they fired me the day before i could have claimed disability...what goes around comes around i hope...
I think it took about 3 weeks after my diagnosis - to realize that I am the same person now as I was the morning of June 1st prior to my dianosis. It's a blessing to have found this site and be able to connect with others, the only ones who really understand . My husband is wonderful, although he doesn't understand fully - his priority is my health. Right after we were married and returned from our honeymoon, he found out he was diabetic. When they tested his sugar it just said HIGH. They tested him about 3 or 4 times, and I don't know why they didn't send him to the hospital, but they put him on insulin immediately. His vision was blurry, he was feeling pretty miserable. We changed his diet and packed his lunch with lots of snacks and veggies and he's off insulin and just taking metformin, which his doctor said he would never get off insulin lol. So when I was diagnosed - he told me he'd take care of me. I cried tears of happiness. Prayers go out to you Terri and all my LWL family.
Trisha
Tez_20 said:
Hello Trisha,
How you feeling now in yourself youngen.lol...since you've joined and also added the thread.
Of course your the same person, it's just that you've been given something life at an age where you can do without it because although i'm 44 soon, it's more of a time for enjoying your life with the years you have left, than to be wondering each day how your going to be feeling when you wake....that's how my morning stem out for me anyway.
I'm pleased the site and member's have handed you a treasured gift of the love you need because there's nothing better than speaking out to one or more who know what you have...i've really found that out plus it gives my hubby's ears a free break at times although he loves and supports me well.
Your hubby will get to know more in time visiting the specialists with you and asking questions himself besides listening to you and the specialist will help him alot more.
I am sorry to hear about in being a diabetic and being put on insulin, i'm surprised they did'nt try him with tablets first like my mom, that's what they usually do here, give you a certain amount to bring you down and if the tablets don't work then it's insulin besides seeing a dietition concerning your foods.
Oh well that's good news off the insulin...see what i mean they could have tried him with tablets first...some do go the extreme from the first.
Oh bless you both and i hope you really learn by one another's love...that support is always fully needed by both sides.
