I don't know either….LOL… How old are your little ones?
I have a 2 year old and a 7 year old (both boys) that are mine then I babysit 3 other 2 year Olds and a 1 year old during the week. I’m doing good to make dinner at the end of the day let alone pick up lol
Stacey,
I have good days and bad days as far as being easily distracted goes- regrettably no one around me seems to understand how severe this can be at times, nor do people seem to understand how bad it can be when I’m distracted and foggy headed- people still expect me to carry on conversations with them- silly people.
I got lucky with my son- no teenage antics. He was actually a good kid and still is, the time does go by quickly though. Here’s something to keep in mind- ‘It isn’t about quantity- it’s all about quality’. Have you by chance read the Spoons article that talks about energy?
I’m glad to hear that you know about varying lab results but I’m glad I could remind you of that little tidbit. Have you only had blood work done? Is there a family history? I have other family members with SS and my doctor decided to send me for the lip biopsy which was positive.
For the dry skin- nothing at all seemed to be working for me and the dryness kept getting worse. The worst for me was showering and having to wash the towel I had patted myself dry with after a shower because it was just covered in dry skin and clothing was so uncomfortable as it scraped across my skin- coconut oil is working for me, you might want to try something like that. Let us know if you find something please.
I used to really hate meds- didn’t even take vitamins! Drs would give me pain meds, I’d take them for awhile, then I’d go off them until it got so bad that I would go back on them- I’m now on the opposite side of that and fear ever switching Drs terrified they’ll take my drugs away because they are working. I completely understand your sentiment about’ take me out back…’ I have told my family that I may only be 44 but I have very little desire to see 80. The thought of another almost 40 years living like this is just too much to accept--we'll see.
You’re right- it does feel good to just say all this stuff to other people that understand- say everything you need to, the vast majority of us on this site are going to completely get it!
My husband does pretty much the same thing. He tells me- just ask if you need help- then when I do need help he doesn’t seem to understand, no one around me really does. Just try to be patient with him, and keep communicating- maybe one day he’ll figure it out.
Yep- you have dry eyes, and dry mouth by the sounds of it. Be careful with rubbing your eyes, use a warm washcloth on your eyes and use eye drops (I just use OTC ones).
I hope you have a lot more 'proud crazy lady' days. Steroids haven't worked so well for me in the past, my dr. keeps threatening me with them, so far I just take other meds and deal with having little energy.
Virtual hug received TY- sending you one too.
Rae, I have noticed the same thing in having good days and bad days. it seems some days I have it all together and can remember everything and other days I can be walking into a room trying to remember why I needed to be in there. My hubby has found milk in the pantry instead of in the fridge that I have put away and so many other little things like this too. He gets it BUT doesn't get it at the exact same time. his explanation is that I am trying to do to much at once. I'm just like "really? getting a simple bowl of cereal before sitting down was too much for me to concentrate on' ; ) lol and yes I have noticed more and more that simple words will completely leave my memory making easy conversations nearly impossible. instead of silly people I feel like silly me lol
Kids do grow so fast. I look at my little ones and how fast it has gone already, I have good kids too but man they keep ya busy lol. Its hard when as a mother you feel like you fail daily anyway then you add something like this to the list of mom fails and you may as well stick your head in the sand and give up. lol I don't, and I wont but just saying : )
you asked about the spoons theory, I actually did stumble upon that a year or so back when I was having more frequent bouts of feeling like I had the flu and the doc was ruling out Lupus at that time. When I found it we were actually on our family vacation and I unknowingly over did it and was down for the last couple days so stiff and achy just feeling like I had the full blown flu, sitting in our cabin I found it and found personal comfort in it.for a long time I hung on that theory lol its still in my head but I need reminded everyonce in a while that it is ok to not be able to do it all. I have noticed I have a very difficult time expressing to my loved ones just how bad I feel because to them its just that I need to do something about it, don't give in kind of mentality.
Yes I have only had labs done. it all started with my Raynaud's, and my fingers splitting open, the doc I worked for at that time (who is one of my best friends and is amazing) ordered some labs to be safe and helpful, he called on the weekend to inform me that my ANA was high/positive and he wanted to send me to a Rheumatologist so that's how I ended up with the first guy who knew nothing lol. That Rheumy did a complete work up, My ANA came back still a really high positive I cant remember the number now though, but all the lupus antibioties were neg along with more than half of the rest of the labs. Sjogren's B was the only thing that came back pos although I don't remember the number or the range for that one now as that was about 3 years ago. since then the only thing abnormal has been an occasional ANA the Sjogren's B is consistent and my ESR and Liver I believe along with my WBC. There is actually a huge family history. My Dad was diagnosed with Sjogren's and Rheumatoid Arthritis of the eye, with labs even similar to mine from the same doc? and my Grandma (Dad's mom) was also diagnosed with Sjogren's and Rheumatoid Arthritis (not specifically to the eye like my dad) Although Grandma has never had any issues with dry eye or mouth she does have the dry skin and the achiness she says due to the arthritis. My Dad on the other hand has had severe problems with his eyes on occasion but usually goes away with treatment then he will go months...even years with no problems at all. BUT my Dad is also one that hides A lot and refuses to give in to anything so I don't know how much he is actually feeling and not saying if that makes any sense.
The dry skin... I have been using lotion on top of lotion on top of lotions lol I can get out of the shower and pour lotion on me and in less than 10 min its like I never put any on in the first place. my feet split open which is terribly painful and my fingers will to if I am not careful. My legs look scaly all the time and have just recently started to itch but that rash I had mentioned before that they biopsied and showed dry skin just showed up within the last couple 2-3 months too.I will try the coconut oil though and see if this helps at all, at least for the legs. and will def let you know if I find something that works better for me too!
I understand the fear of switching doctors for many reasons lol like you said anytime you get on something that works someone wants to change it but also, I'm having a hard enough time finding one that understands me now. lol I cant go another 4 years trying to find another after I finally get one ; ) And I understand completely about what you said about the next 40 years. I have said that before too. If I feel this bad at 30 how is 60 going to be?
My husband tells me to ask if I need help but then other times its well you made dinner so I thought you felt good? lol its like no but we need to eat lol. I am patient and try to remember he doesn't feel it so to him its not happening. but he can tell my real bad days and really steps up to the plate then so I cant complain to much about him ; ) lol
I kinda thought maybe my eyes and mouth were dry. I will need to watch because it seems like I am rubbing them all the time anymore, I have to call tomorrow to get into my yearly eye doc apt. I can request testing when I call? Or is this something my GP needs to order? I don't know anything about this
And you are welcome for the virtual hug lol thank you so much for mine as well : )
I thought I would add that you may want to look up "An open letter to those without Sjogren's". Its a little more concise than Spoon theory. It says a lot of things I think people in our lives need to know but rarely understand, even if we do try to explain. That may help also.
I have started using the in-shower lotion too (the severe skin one) and it seems to help. You put it on while your skin is still wet, quick rinse then done. If you can let the skin mostly air dry, it works even better. I don't know if it would be enough to help but it did me some good.
I am also terrified of changing docs...mostly because I finally feel like I have "my team". It is unnerving to think of having to start all over once you've been treated horribly in the past.
Hi Stacey
I know exactly how you feel. I feel the same way all the time the brain fog,daily headaches,lack of sleep, fatigue, stress.
Believe me you are not alone. I hope you find better answers soon. It can be frustrating.
Good luck!
I’m new on this site and just reading your stories, I no longer am alone. I hope to continue reading and share my story.
Glad to hear it, nk….it was a huge blessing for me to find this site in the beginning too.
Hi Stacy,
Welcome to the roller coaster of autoimmune disease. I have Rheumatoid Arthitis, SS, Fibro. And never know what will happen next. Sometimes when I get ready to go out by the time I’m ready I’m too tired to go.
i was diagnosed in 2009. I’m a nurse but had to retire because my hands got so bad.
Your words make perfect sense to me, especially the part about doctors wanting to send you away.
It sure is a rollercoaster. What's troubling me is the lack of knowledge about this disease, particularly among physicians.
Kquixtar said:
Hi Stacy,
Welcome to the roller coaster of autoimmune disease. I have Rheumatoid Arthitis, SS, Fibro. And never know what will happen next. Sometimes when I get ready to go out by the time I'm ready I'm too tired to go.
i was diagnosed in 2009. I'm a nurse but had to retire because my hands got so bad.