Introduction and some questions

[featherduster]

My name is Nancy.  I just turned 40 two weeks ago.  I feel at least 20 yrs older than that.  Five years ago, I was a fairly active mom of three kids.  We homeschooled two of the three kids.  My middle child has always gone to school because he's a special needs kid.  I was busy all the time and fine with that.

About 4 1/2 yrs ago, I started getting really tired and gained 30 lbs in 3 months(while dieting).  I finally called my doc and he ran a thyroid panel--it was in the 70s.  I took my thyroid meds and felt somewhat better.  But since then I have had one issue or another crop up- extreme dry eyes, Meniere's disease(ear problem), chronic sinusitis and sore throats and many other things.  I have felt like a hypochondriac because I always have something wrong with me.  I have seen an eye doc, ENT and endocrinologist and none mentioned Sjogren's.  I recently went to a rheumatologist because my hand joints lock sometimes as well as widespread joint pain.   My test results have not come back yet but he is almost 100% sure it's Sjogren's.

It might sound strange but I'm somewhat happy.  It's reassuring that all of these different problems are connected.  I had asked before about the different problems being part of the same disorder.  I was dismissed by the doctor.  Sigh.

I now need to look forward and take charge of my health.  I put the kids in school this year because I just couldn't homeschool this year.  I would like to work part time at some point.  My special needs child is the biggest reason that I need to be proactive about my health.  He is 11 and around 80 lbs.  We have never had nursing care for him but I may need to have some home care help in the future.  My husband and I can't do it forever.  But he will live with us until I essentially am put in the ground.  I need to be in better shape.

I would appreciate any suggestions on dietary changes, supplements or exercise routines.  I start exercising but I guess I overdo it and then crash.

Thank you for reading my novella:)

[Pisces24]

I kept getting sinus and throat infections that sometimes took 2 rounds of antibiotics to "cure". I got used to having 7-8 of them every year.  Sometimes my partroid gland would swell up real bad too. This didn't come up until I'd estimated about 12 years ago. I started having 5 cavities per year with my teeth starting about then and the funny thing was in my WHole life prior to that I had maybe 5 total!

I also had Hashimotos but that was diagnosed long before this "stuff" cropped up.  Thyroid does a lot of stuff. (Gosh with me I could use some wt gain!  )  I got sent on the "journey to find an intelligent specialist" by my gp who saw #s in my bloodwork gradually going up, got concerned and was durn well going to find out why. He has a different opinion of "specialists" now (Me too) as it took 6 years to get a firm diagnosis thru bloodwork of Sjogrens.  My ANA, SS-A and SS-B were extremely high so it was no doubt by the immunologist that finally diagnosed me.

I am working on getting myself healthier but for the time being I keep getting knocked down with either a really bad cold or that stomach virus/flu that is going around and it takes me longer to recover with the SJS too. I'm also working long hours at work which doesn't help a bit. I got an old exercise bike with a timer and I get on it a little while at a time - at least I feel I am doing something.
We tend to start collecting -ologists for each part/symptom Sjogrens affects. I have 3 so far watching stuff.

I have to tell you this to give you a chuckle.  In my journey I got a lot of "opinion diagnoses" from different doctors. My favorite funny one was "It's the Cat's Fault!" and I didn't even have a cat when tall the stuff started.

[Sha]

Welcome to the treehouse!!

I have lost 33 pounds since november....first 10 came off cuz I had thrush and everything tasted horrible even after the thrush was gone! I work in the intermediate autism room so have to be VERY active as you probably already know

I used to coach gymnastics on and off for about 5 years so know all the exercises to do to get the results, just needed motivation! I use a resistance band (the blue one) for a lot of my leg toning. I use another resitance system with 4 handles for some ab exercises and arms/legs. I also use an exercise  ball for a lot of other exercises. All of them are low impact so don't hurt the joints....no jumping or aroebics! If you gain muscle, you lose weight! You will gain a little before you lose cuz muscle weighs more than fat.

I also haven't changed what i eat, just how much i eat....i cut everything solid in half (not drinks). I fix my plate like normal, then just cut everything on my plate in half and put the rest in fridge for another time. I split it in half and take it OFF my plate so that i am not tempted! It is a lot of discipline, but your joints will thank you for it! Mine has! I beat a kid up the cargo net yesterday in 10 seconds....the other paras didn't even get 1/2 way! Raced a kid up and beat him too, and that was the second time I had went up (goes to the ceiling in the school gym)! This kid was one of the 5th grade buddies we have for project active and plays sports, so the pe teacher was really impressed at how in shape i am in now!LOL 

You can pm me if you want some of those exercises described for ya, but all that I do doesn't take much more time out of my day, or I wouldn't be able to do em if ya have a busy life like i do!

Sha

[Scottietottie]

Hi Featherduster 

Welcome to Sjogren's world.

I know what you mean by a sense of relief. Nothing worse than being thought of as a hypochondriac when there is something genuinely wrong. It has happened to a lot of us!!

There are meds that can alleviate symptoms and SjS is interminable rather than terminal in an overwhelming number of cases. I've had it for about 30 years now although I only got a dx in 2004.

You have to learn to pace yourself. You'll have good days and bad days. Try not to overdo it on the good days and there will be more of them. Also try to minimise stress because it doesn't help.

As far as the home goes work out what absolutely HAS to be done and cut down on all the rest. I have 4 kids and they probably grew up in one of the untidiest houses on the planet but they've all made it OK. They were clean, fed and all did various activities that I could sit and watch. If they wanted clothes ironed - they had to do it themselves and I'm talking about from age 9. My youngest used to make money out of her older brother by ironing for him - at a price! I only found this out later. She kept up the good work at University and bartered dishwashing for others cooking skills!

I hope you find the site useful.

Take care - Scottie 

[Bucky]

Hi Nancy - welcome.

Happy belated Birthday!   

My hat is off to you and homeschooling your children through the years - I could never do that, and I only have one child.

Many of us here on the forum have gone to our doctors with various symptoms through the years and the puzzle pieces weren't fitting into place . . then, bingo . . . we end up with the Sjogren's diagnose.  Even though it's not fun to have Sjogren's - at least we feel validated that all this nonsense has a name!   

Another piece of the puzzle that might apply to you is dental issues.  If you have the dry mouth, the lack of saliva to wash away bacteria in your mouth plays havoc on your teeth.  Many members teeth just crumble and break or they end up with many, many cavities even though they are diligent with dental hygiene.  It's important to have regular dental visits.  In fact, it was my dentist office that recommended I check with my PCP about Sjogren's because his dental equipment was sticking to my dry mouth.

I would guess that getting up from my bed, walking to the dining room and plopping down in my computer chair doesn't count as exercise?!?  LOL  I "know" I should be doing regular exercise, but I'm just not motivated to do it.  Does watching the Biggest Loser count?     Several members use the Wii Fit and really like it - it looks fun, but I don't have a Wii.

I hope you find this site helpful to you on your Sjogren's journey.

Bucky

[featherduster]

Thank you all for making me feel welcome.  I've been reading some posts and getting a lot of great info from them.  It is a comfort to know that I'm not the only one with this.  I've felt slightly alien since I don't know anyone who has dealt with this.

I feel frustrated that I can't seem to have more than a few good days before WHAM!--I feel like I am in a minor car crash.  I took my daughter and god daughter swimming a few nights ago.  The water was warm and I felt great.  I woke up the next morning and wanted to cry.  I try not to cry because of the dry eyes of course   So many different joint pains, sinuses are killing me and my eyes are so dry they feel like they are on fire.  Most of the issues have calmed down some except the eyes.  I need to see the doc in the morning.  I only use artificial tears because I can't use Restasis.  The tears are not helping.  I have a couple bumps on the sclera of my eyes.  They are so bloodshot.  My son uses lacrilube for his eyes.  I may borrow a tube and see if the gel helps when I go to sleep.  Man, I hate this.

We had a family meeting yesterday and told my kids that they must help more.  I want to do the fun stuff with them but I have to reserve my energy on the bad days.  We are hosting a Super Bowl party this Sunday.  We invited a couple other families to watch with us(we live outside Pittsburgh).  I plan on being a lump on the couch Monday.  I even gave the kids that Monday off from school so they can help... ummm I mean relax

Well, I guess being on the computer is not helping my eyes so I'd better sign off   Thanks again for the welcome.   I look forward to chatting with you all some more.

[Meld256]

Hi featherduster,

Welcome to the fold!  I'm sorry you're having these problems, but this forum is a wonderful and caring place to come to for lots of info. and encouragement.

Your "novella" was not that long.  Thank you for telling a bit about yourself. It sounds like you are doing everything possible now to take charge of your health.

That's great that you had a family meeting; communication with family members, especially children still at home, is so very important. I think most kids really feel good being a help at home and having some responsibility, and it gives them a wonderful life lesson.

I understand the frustration of a good day and WHAM. It takes time to pace yourself to your own body's limits. Everybody is different. Please let us know what the doc says regarding your eyes, and keep us updated.
Other's have given some good tips, so for now I'll just say welcome. Feel free to ask anything, we care and will be happy to help however we can.
Blessings,

Melinda

[Joe S.]

Welcome featherduster. Must be a bad day, I forgot what you said in your two post. I hope your kids do well in school. My one grandson that was home schooled had trouble being bullied in regular school.

[sis]

Welcome, glad you found this site.

I used to HS my kids too.

They are both back in school as of last year and it is working out fine.

Glad you had the super bowl party.  I was pulling for your team!

[hikerknees]

Hi Featherduster,
I hate to admit this since I'm a physical therapist, but exercise has always been hard for me.javascript:void(0);  I find use of the buddy system really helps.  And on those days my system just won't come up to bat, I have found that even a little bit is good to help keep the circulation going, even if it is just ankle pumps or 2mph on the treadmill.  I also now schedule a "crash" day where I won't try to do much of anything but rest, currently once a week, and that helps to recharge me.
I feel for you with 3 kids, and have lots of experience with special needs kids since I have worked in the schools for many years.  Perhaps I'm assuming too much, but I'm thinking he must have therapists and SPED teachers that might help you plan for his changing needs at home.  We school-based therapists often overlook this part of the equation if it seems the family has it all together, but you might find some support in that quarter if you haven't already asked.  You will likely need to do some educating about what you are experiencing, I knew nothing about Sjogren's until I got it, and the fatigue and transient weakness is something I have to figure out almost daily.

[Joe S.]

Welcome HikerKnees. Why don't you start a new thread and introduce yourself?