Hello. My name is Lisa and i just recently was diagnosed with Sjogren's. it started for me back in March when i got sick with a viral infection and was sick for about a week. i seemed fine and got better and went on with work and living. but a few weeks later, i noticed that i would get short winded after walking or climbing, but me and my husband just thought of it as being "out of shape". but as time went on, my shortness of breath got worse. and by the time June got here, i could barely walk from one side of the room to the other without fighting for air and getting so exhausted that all i wanted to do was sleep. so i finally called my gyno and asked who they would recommend me to go see for a PCP since i didn't have one and didn't trust the docs in my home town. they recommended someone and i called to set up an appt. when i went in to see him, he told me it was just stress and raised the mg on my anti-depressant. i knew it wasn't stress cause i had been the least stressed i had been in years. he said he didn't think it was asthma, but he scheduled a chest x-ray and a pulmonary function test anyway to rule it out. well i found out by the time i got there that he already had ruled it out even before i couldn't perform the test. i ended up going to the walk in clinic next door cause i was so bad. they said it was anxiety and gave me colonopin (excuse the spelling), which was some bad stuff, and sent me on my way. after 2 doses, i stopped taking it. i was sent for a leg ultrasound that week and ended up in the ER. i spent 5 days in the hospital and had several EKG's done, several blood tests, chest x-rays, CT scans, a ekocardiagram, and a heart cath cause the eko showed some mild pressure on the right side of my heart (i'm only 31!). luckily the heart cath was normal. after being released, i started seeing a pulmonologist, a rheumy, and new PCP whom i have more confidence in. after total from June til last month, i had at least 70 tubes of blood taken, a skin biopsy, a eye test, a hearing test, and was finally diagnosed with SS. i was on oxygen for a month and just recently traded it in for a walking stick due to the bad joint pain i have in my hips, knees, ankles, and now in my shoulder, wrists, and elbows. i have to be checked every 6 months cause my ANA testing showed so many positives they said i could develop RA or lupus. every day is tough not just physically, but emotionally and mentally too. i haven't worked since June 26th and most of the time my personal life is effected as well. it is hard to stay positive most days even tho i know everything, including this, is happening for a reason. i worry about being able to go back to work and the effect the stress from this and all my doc appts and therapy has on my husband. he is a wonderful person and has been so supportive, but this would have to get to him since it def gets to me. i get so exhausted so easily, even with rest and a lot of days just don't feel that good. i see a counselor now that said it might be a good idea for me to join a support group for Sjogren's cause it would help to talk to people that understood where i am coming from. some days i don't feel all the docs i see are that understanding and think i should be able to go right back to work now with no probs even with all the pain. one even said " if you don't use it, ya lose it". i try to push myself as much as i can. last week i did that for 4 days and have paid for it since. for 2 days i hurt so bad i cried. and now i am sick with a cold or virus. i just wanna scream some days. does anyone else feel that way???
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