Hello everyone. I'm new to the forum world but it seems like a great way to give and receive support. Over the past several years I was experiencing reoccurring -intermittent ear, sinus, bronchitis, UTI infection, trouble concentrating ( especially at work-fast paced) office environment and foot cramps , fatigue etc.. Last year I started having numbness on the right side of body, shoulder pain (arthritis)and after ruling out MS etc. based on brain lesions and positive ANA I have begun taking cellcept 500mg twice a day which keeps me bloated but otherwise no issues.
How do you cope with not being as sharp as you once were, it's really affecting my job performance because my paced is Very slow and the demands are already un realistic for normal person, my self esteem is horrible and I'm really working hard at improving my mindset (reading & listening to positive info, meditating but still problematic. (taking anti-depression meds) thanks for letting me whine :)
Glad you found this site.
All those here are so helpful and supportive.
If you use the search you will find lots of threads about the challenges you mention.
You are so right about remaining positive. Take the time to nourish yourself.
You cant afford the luxury of a negative thought!
There is a book by that title that I keep meaning to read.
Hope you enjoy your weekend.
Sorry you have to have sjogren's.
Thank you and I will look that book up :D Wishing you a wonderful weekend also!
hi Lizzyp
Yes, I too work at a fast paced job.
I am an LPN working in a dermatology office. Other than the dr. I am the oldest there. I see the 20 and 30 year old gals zipping around with clear minds.
I am self concious b/c they are younger and "healthy" and it shows. I am not as fast as they and I really have to concentrate (shut out distractions) when talking with a patient, drawing up meds, pharmacy orders, etc...cut way down on multi-tasking.
What I once took for granted...a clear mind and fast body movements is gone.
Maybe someone else can come up with a suggestion for you.
I just wanted to say hello and let you know there are others (me) who have noticed and thought the same things.
keep posting.
eye2dry
Hello eye2dry,
I"m 49 and I can fully relate , I see my co workers running circles around me and being so much more productive. I've mentioned to my supervisor my Dx and challenges, they are understanding but at the end of the day, you must produce and there's a expectation. Thanks for sharing, it really helps to know others are dealing with the same issues as I.
Enjoy your weekend!
Hi Lizzyp :)
Welcome to Sjogren's world. Brainfog is not good. Make sure they check your thyroid function regularly because if it goes awry the brainfog gets even worse!
I hope you find the site useful.
Take care - Scottie :)
Hey, Lizzy, welcome to our family! I hope you find comfort and knowledge on this board and make good friends. We are here for each other!
hey Lizzy,
I too have noticed such a change at work in the past 8 years.....especially when we go for training of new technology or patient care protocols, meetings (I never liked) but now they boggle my mind. For so long I thought I was losing my intelligence and then I noticed I was not as quick on my feet so I walked a 5 mile walk for ALS and my muscles turned into rubber! Comparing myself to the young folks is really bad......my "old" is screaming out to everyone who knew me there when I was younger. Oh well.....I've lost some confidence but then it picks up a bit when I'm writing a grant for funding and sitting at my desk wracking (sp?) my brain for months!!
Welcome to the world of crazy Sjoggies :D
I felt this a lot this week. Doing some exciting stuff as part of a team at work. But when I go to explain anything the wrong words come out of my mouth. I mean, I'm making words up! I used to do a lot of public speaking and now I'm afraid to talk to small groups even because I struggle with my words. I'm in technology. I can't keep up! I'm starting to think that maybe I do need to get the lip biopsy so hopefully I can get an official diagnosis incase I need disability before I'm ready. But I'm also afraid that I won't be diagnosed even after the biopsy. Then what?
I agree with so much that others have said here - I just wanted to add that you might think about seeing a nutritionist and trying different supplement/diet options, if you are into that sort of thing.
Every person's body chemistry is different, but for me the ones that make a big difference are Vitamin D, Vitamin B12 (often people with A-I diseases need a LOT more of those than normal people do), magnesium, CoQ10, and niacin.
Every couple of days I take a chlorophyll supplement too, which helps with red blood cell production and seems to give me a bit more pep. There is only one brand I can use, because I can't eat any wheat products (many supplements are made with wheatgrass), and because of lupus I also can't have alfalfa (also a common ingredient in "green" supplements). There is one called "ChlorOxygen" that is made from nettles, and I like it. It's drops you put in water or juice.
DHEA is a supplement that is a bit controversial, but on the advice of my neuro I take 25mg/day and it seems to help a bit with the brain fog. But be sure to research it and talk to your doc because it acts a bit like testosterone in the body and there are lots of legit medical reasons NOT to take it. It just depends on YOUR individual situation.
Also, I have recently started taking SAM-E once a day, and it REALLY helps!!! I don't know if my body was deficient in it or what, but it's pretty dramatic. I generally feel sunnier, more optimistic, and more ready to tackle problems/tasks. I'd say of all the supplements I have ever taken (and I have tried a ton of them - some help, some do nothing at all so I stop taking them) SAM-E has made the most dramatic difference.
Again - nutrition is SO individual, so just because it works for me doesn't mean it'll work for anybody else, but nutrition is maybe a place to look for some help. I'd definitely suggest talking to a nutritionist, and ABSOLUTELY check with your doc before taking anything.
I have run into a lot of very educated, well-meaning folks in vitamin stores, "natural health" places, etc who think they understand what you are looking for and they end up recommending things that can be QUITE HARMFUL for people with autoimmune disease. Usually they want to give you "immune support" formulas, not understanding that the problem for us is that our immune systems are already TOO ACTIVE. Ingredients like garlic, Chinese mushrooms, astragalus, echinacea, ginseng, etc can throw you into a SERIOUS flare - enough to be hospitalized. Vitamins and herbs are DRUGS, make no mistake, and your medical team needs to be on board with anything you take.
That being said, if I research something and feel strongly about trying it, I will "argue" with my doc about it - I just refuse to try stuff without telling him - I rely on him to help keep me healthy. He can laugh at me for wanting to spend money on vitamins, but I think he also finds my little "experiments" kinda interesting - if only for his own amusement. :P ::) ;D
Hope that helps....
Wow. Thanks everyone for the great advice, I will definitely be trying a lot it not all of what's been suggested (I will keep my Rheumy& Neuro) in the loop. I now take vitamin D, fish oil supplements, B-12, Geritol, gabapentin and cellcept with regards to Sjogrens...
I take it day by day and sometimes moment by moment. I can not afford to retire so I must carry on as I've heard others mention. Family & friends are supportive but really don't get it because I look ok, it's nice to not have to justify why I'm tired a lot or seem anti sociable.
Thanks again ladies & gentlemen!
hey Lizzy....I haven't heard the word "Geritol" in ages!!!! wow.....what do you take it for or should I say what positive things have you noticed since taking it?? :)
Hi gold55, you made me LOL.. Geritol is a vitamin-iron that old folks take for energy :), and it does seem to help. When i was younger, many years ago I took it because I was always exhausted (my kids were young) and it worked so I decided to give it a try again.
Welcome Lizzyp, and I am with the rest of them on all the goodies that we endure with sjogren's. We will have to do the sjogren's shuffle. ;D
susanep :)
Welcome to the group. Lots of nice understanding folks here! 8)
The only advice I can give is try to prepare for things and write down stuff. Writing down stuff is kinda like a double memory thing and it does help.
I know we can't totally prepare for everything that might come up but even a little bit helps. I was a caretaker for my folks for some years so I just learned / tried to be that way for them. My mother used to kid me a lot as on any 3-4 day vacation I got soooo prepared you'd think we were going on Safari for a month! LOL ;D
I too have a demanding job but it is sitting at a computer all day and remembering stuff, procedures, etc. etc. I notice my memory isn't as good as the younger folks but I use the PostIts when I miss something (we are quality checked) and it helps. I come in a bit early and start off the day reviewing stuff and checking emails for updates, etc. Yeah it is more work but it does help and boss is happy with the job I do.
Hello all, I had a better work week. I've created a plan-schedule for working on task(s); filing, returning calls, preparing letters, processing mail, ordering etc... I'm also using the microsoft office calendar more for reminders.. Thanks for all the great suggestions, brain fog has been a major problem at work so the extra efforts paid off..
Have a great weekend everyone... TGIF!
Hi Lizzyp,
Let me also welcome you to the SJS World and family!
I'm like you, gotta work insane hours in a fast paced environment....its insane and necessary (can't afford to retire either).
I'm glad that you're putting things together to help, and let me tell you, that's half the battle (don't ya just hate the brain fog?).
Again, welcome and I hope that you find this site as informative and welcoming as I have.
Take care of yourself now -
Patze