Yesterday as usual I like to make cookies for my husband to have in his lunch this week. Anyway, I just started huffing and puffing because I just KNEW that mixing that cookie dough would be more pain than I could take for my hands/wrists...it was the first time for me that I faced a 'can't do anymore' moment. Funny thing was he was happy to mix it for me as I poured in the ingredients and he was like..."wow, this is kinda hard..surprised you could do it this long".
He's very supportive but darn, I'm shutting down little by little on what I can do...I don't have a choice...like lugging the vacuum...I'm going to ask him to do that from now on.
I'm not on any medication yet...Just got Dx in Nov. but my long term hand arthritis pain/weakness has been getting worse every month for years....never mind the fatigue !
So here we are then. It starts with cookie batter??? These domestic things around the house...taking care of hubby, cat and two chihuahuas are my joy in life...it's hard to imagine that this chronic, progressive disease won't just run it's course and go away like so many other ailments. I know this whining of mine is SO minor compared to real suffering of so many here.
I feel myself pulling back more and more from things that 'USE UP MY SPOONS' : )
Maybe it's time to buy some more silverware so I can open up a jar.
Just don't eat the cookie batter or the cookies.
The sugar will make it even worse!
sigh, I didn't know sugar makes it worse...I feel stupid now, why doesn't your Rheumy tell you that ! I've been eating sugar all month ..ya know...finishing up the holiday sweets..hummm.
what other foods should I avoid..?
Hi rudytudy,
First of all, whining is allowed here. And you're not whining, you're sharing with us-got it? ;) That's what we're here for.
I DO so understand...those "can't do" moments are annoying and aggravating. Seems like simple things are a chore. I could swear items become heavier sometimes than they were the day before! I picked up a 12-pack of soda for my MIL a while back and swore it must be 20 lbs.
I have my story of "hacking into" a bleach jug with a steak knife because hubby was at work. ;)
It sounds like you've had some problems for a while and just been diagnosed; is that right? You say you're not on any medications as of yet. Is it that your doctor/s have not recommended anything?
Let me say that with treatment you can begin to feel better. Meds like Plaquenil, nabumetone, Cymbalta and others can help some of us. Everyone is different but that's just a sampling. My understanding is Plaquenil was given to Lupus and RA patients for a long time, and now is known to help those of us with Sjogren's too.
And as Liz said, some of us don't do well with sugar. Personally, it doesn't seem to affect me; give me a good cookie any day! But again, we are all different in what bothers us.
This is a new diagnosis for you and it may take a little time to see what helps you, but there is hope that that cookie batter might not always wear you down! 8)
Take care and keep on posting. And never think that your issues are small. We cannot compare ourselves to others since we all have our own things goin' on.
Melinda
1.) Buy refrigerator cookies. 8)
2.) Until they invent a riding vacuum cleaner, I've sworn off. ;) Actually, I have hardwood and vinyl floors that I can sweep and only a couple of area rugs that need vacuuming (along with the chairs and sofa, obvs). But that small amount isn't as bad as vacuuming all the floors. I'd love to try a roomba vacuuming robot!
3.) Don't be so tough on yourself! Of course you don't know everything just yet --- you've only been dx'ed a short time. That's what we're all here for.
Good ideas, A66ey!
I didn't mean to overwhelm you, rudytudy. Keep posting and ask anything.
I've been looking into those roomba robots (or the kind for uncarpeted areas) for my MIL. She has a huge expanse of pergo and ceramic; she can't handle it anymore and her helper (me) can't either.
Hi Rudytudy :)
Don't give up hope yet! You say you are not on any medication yet. When you get on some you may well find that you are able to do some of the things you are having to give up right now. Chances are you will feel better than you do right now.
Take care - Scottie :)
I second what Scottie said. You may feel much better when you get some medication that is right for you, to slow down the autoimmune reactions.
But do look into ways to make what you like to do, easier. I can't beat batter any more, so I use a cheap electric mixer. When that got hard, I looked at stand mixers and lusted after a Kitchenaid mixer. (I changed my diet and bought a juicer instead!) Good grips can opener. Bread machine to knead bread (check thrift stores). Lightweight baking pans. Roomba to vacuum. Really. Save your arms and hands for the things it's important for them to do.
(I've also asked store clerks and pharmacist assistants to open bottles before I left the store!)
My kids found some foam-type grips at a grocery store. I can open a lot more bottles and jars than I used to; gives me a lot more grip. Always be on the lookout for items like that to help.
Hey
i have only been on my strict diet for a lil over a week now but my left eye (bad bad dry eye) is so much better since i cut the bad sugar... I do eat a few thinsg of fruit a day-love my fruit.. i only eat almond butter, seafood, eggs, sweet potatoes with cinnamon, oatmeal with blueberries , fresh or frozen green veggies, celery. raw almonds. beans...etc..
i even noticed all the bad stuff in canned mixed nuts like cottonseed oil-so bad for the meibomian glands in eyes.. i have MGD bad too.. all i can say is the dryness is about 50 % better than it was when i was eating crap or even eating "healthy" like thnking a salad from Wendys was healthy.. Now when i go somewhere i prepare my own salad or side of beans with a piece of fish etc....
other than fruit i am not ingesting extra sugar and notice a big big difference... i will keep everyone posted. i plan to stick to this for about 4 months and see how much better i get..
Thanks everyone....My Neurologist looked for SS in bloodwork based on symptoms I had and found high SSA-ro counts and was diagnosed at that time with SS. When I first saw my Rheumy Dec. 26th he gave me a prescript. for Gabapentin because I had the fibro points that were sore (I think I'm just sore all over..)
He never mentioned Plaquenil. I left a message with his nurse today that I didn't fill the Gaba. and would rather be prescribed Plaquenil. With fibormyalgia your supposed to have trouble sleeping and migraines and I sleep really well and never had headaches. So I'm hesitant to start a med. that I don't think is for me. ya know? Neurologist and Rheumy have be getting a cervical MRI on the 16th. Once I get results of that I'll ask to be put on Plaquenil and also get a lip biopsy...I'm super sensitive to prescriptions drugs and don't want to start on something 'til I get the MRI results. I have tons of this stuff in my family...my Dad had terrible soriatic arthritis..Mom passed of pulmonary fibrosis (I swear she had SS but never diagnosed) My grandma passed from RA in the sense that the meds of HER day really killed her. My Aunt has SS and non-hodgkins lymphoma.. But I will get on something soon. I'm THRILLED to hear from some that I may get a little better with my hands on a med. thanks again for being here...sometimes I just want to call someone I know but they just don't get how frustrating it can be...thanks again.
Quote from: rudytudy on January 09, 2012, 05:16:09 PM
Thanks everyone....My Neurologist looked for SS in bloodwork based on symptoms I had and found high SSA-ro counts and was diagnosed at that time with SS. When I first saw my Rheumy Dec. 26th he gave me a prescript. for Gabapentin because I had the fibro points that were sore (I think I'm just sore all over..)
He never mentioned Plaquenil. I left a message with his nurse today that I didn't fill the Gaba. and would rather be prescribed Plaquenil. With fibormyalgia your supposed to have trouble sleeping and migraines and I sleep really well and never had headaches. So I'm hesitant to start a med. that I don't think is for me. ya know?
I've been diagnosed with fibromyalgia since May of 2000, and Chronic Inflamamtory Demyelanating Polyneuropathy since September 2001. For most of those years I've had no trouble sleeping, and no migraines. BUT I do have the tender points, and I do take Gabapentin, which helps with the pain from both.
As the following link shows,
http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibromyalgiapain.htm
(http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibromyalgiapain.htm)
fibromyalgia pain is much more complex than headaches and insomenia, and Gabapentin/Neurontin is a good medicine for the voodoo stabbing pain (read the link) and some of the others.
Your rheumy may have gone to that first partly because you had seen a neurologist right before.
I would hope you give Gabapentin a chance.
Best,
Soycoffee
Rudytrudy......if you are positive in your bloodwork for Sjogrens, don't bother with the lip biopsy. It should not be necessary. It can leave you with a numb lip and it doesn't necessarily go away. Mine is 5 years old. Because I first has an idiot for a dr, he had me have the lip biopsy and had not even done all the blood tests. Turns out my blood tests were positive.
If you have to prove to someone you have this in order to get a medicine or perhaps a million dollars, then give the biopsy a thought. Otherwise, it's not worth it. Lucy
Hi rudytudy. Welcome! I'm glad you're asking for the Plaquenil. My hands did get so much better after I started on it. I get flares, but I notice a big difference.
It sounds like your Rheumy is still in the process of discovering everything that's going on with you.
Ok, sugar may make it worse, but, sometimes we all need a bit of sugar or chocolate or something comforting sometimes. I think that it's like everything in life . . . Moderation is the key. A cookie or two great just don't eat the whole batch in one day right? ;)
Don't feel silly about things you're just learning about Sjogrens. We're all learning more everyday, and how it affects us individually.
Welcome, Rudy! As you can see, each of us has to explore to find what helps us, whether in diet, meds, or other habits. Try one modification at a time, so that you will know what makes a difference for you!
Like you, I prefer homemade cookies. I have started using the bread machine's knead cycle to mix the dough. (There is nothing extra to wash since it replaces the mixing bowl.)
Wishing you well!
Cheryl
Left a message with my Rheumy's nurse that I'd prefer the Plaquenil prescript. instead of Gabapentin and she just called back to tell me my Rheumy said to tell me that Plaquenil is NOT for Sjogrens. good grief..he must be old school...I've read it works well for RA and SLE but that it is being widely used now for SS. This is what you all mean by " it's a journey with these doctors"...I've read that Plaquenil can have some side effects that must be considered so maybe he's just being cautious. Just an update to let you all know.
One of those standing mixers with a bowl that turns around by itself. Xmas is the only time I make cookies, but it's worth the investment. I have to do rationing, though, or the joint pain gets worse. I did not ration well this year, and only now is it getting better.
The other day at work I was trying to open a dasani water bottle. I couldn't budge it! I was stunned, almost in tears, even my elbow was starting to hurt from the twisting motion. I snagged one of the coaches in the hall (I'm a teacher) and asked him to do it for me...and he couldn't either! He looked closely at the cap, and it turned out that there were no little perforations around the rim...it was solid plastic! He whupped out a knife and cut it, then opened it. I felt so much better, knowing I wasn't as feeble as it first appeared.
RudyTudy, it appears that you're going to have to find a teachable moment with this doc. Maybe print out some information from the internet. Here's something from Mayo that might help: http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147/DSECTION=treatments-and-drugs (http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147/DSECTION=treatments-and-drugs).
I hope you get some relief!
Sugar doesn't necessarily make everyone worse. There is a lot of misinformation out there based on "association" studies that are presented as cause-and-effect studies. If YOU feel better or worse with a particular diet, the go with it. But there is a lot of demonizing of various foods without any justification, and too many people are just plain neurotic about their food.
We have enough problems without adding to them.
I to have fibro n ss n nero issued along with some strokes I also do have migraines bad. They have me on both neurotin and plaqunel. It has helped me a great deal I don't have as much pain but recently I have had a lotta arm (shoulder to tips of my fingers) problems. I can't grasp a glass sometimes or I will drop it when it hits. Dr took a mri/mra of my spine I already have a fussion c-4 to c-6. The test showed I have pressure on my spinal cord / nerve causin this. Not sayin this is what's goin on with u but I have osteoprosis n the bone one arithitus dr assumes. But I do have degenerative disk diease. So I may have to just deal with it but I kn the dr will wanna operate. It's as bad as when he did the others. So have them check to b sure since he's doin the mri. Hope everything works well for you. God bless
I know I have come to many points where I have to let go of what I want to be able to do and start doing what I am actually able to do. You guys are not alone! It sucks to have to face it.
As for cookies....
I now make a lot of freezer cookies.That way I can spread out making them over a few days. Mixing and cleaning up the kitchen on one day and on another day baking them when I have the energy.
For that matter I make slow cooker meals now too. Anyone else got any energy saving tips?