I'm supposed to be

General
1

I'm sure many of you who are currently reading this are "supposed to be" doing something else. Some might even think of this board as something "extra" that they do in their day, when, in fact, it's a great part of your treatment for PsA! Connecting with others who understand and support us is vital to our emotional well-being and reducing our stress levels. :)

So...what are you "supposed to be" doing?

I'm supposed to be taking care of eight kids, figuring out dinner, packing for vacation, planning homeschool stuff, doing work for my non-profit organization, and cleaning my house. But I'm doing something for ME instead. :) (ok...in addition - I AM taking care of the kids!!! )

2

Whatever it is I'm supposed to be doing, I guess deep in my heart, I am still looking for that 'magic bullet', Oh I know very well that there isn't one, they don't have a cure, it's debatable if they have a clue as far as a cause and a cure. I happen to believe that they do have a clue, just hope it's the right one, so that I can be out living my life instead of complaining that I can't!!

What would I do? Drive, ride in the car, to go anywhere, because it hurts so bad to drive down the road to the grocery store, every little dip or bump about kill me! I would travel, and I would like to work, really do a job or task that took physical labor, something I could stand and look at as complete, like dig up a big part of the yard and put in a tulip bed, perhaps build a small pyramid! Always wanted one!

3

So up date us on the vacation plan Nym...... Are you doing new underwear or old????

And is Dmara going to Portland?????

I'm going nowwhere (unless I take a break running in circles....)

4

Vacation: We leave at around 3AM Saturday for the 8.5 hour (if we're lucky) drive to Pennsylvania to visit my in-laws. (No internet there - eek!!!) I have to fit clothes for a week for seven people, a tent, an air mattress, celiac-friendly food, entertainment items for the kids, sleeping bags, pillows, a cooler, my wheelchair, etc. etc. etc. all in a minivan!!! Saturday we'll just hang out, set up the tent in the yard (my husband and some of my kids sleep out there, as there's not a lot of room in Grammy's house), and play cards. Sunday we'll go to church, then a civil war reenactment (Happy Father's Day!). Not sure what our plans are for Monday and Tuesday - probably go to the lake for a picnic, hike and swim one of the days... and do the paperwork and get a temporary registration for the 12-passenger van my FIL found for us. On Wednesday we pack up our "new" van and head to Maryland, where we'll be spending 2 nights in a hotel, going to the science center and aquarium in Inner Harbor, and visiting my grand-in-laws. My kids and dh will do lots of fishing at Pop's house. We make the trek home on Friday, spend Saturday doing laundry and re-packing, and then we both work Sunday - Friday. That Friday, we pack our van again and leave early Saturday for Camp Calumet in New Hampshire. My oldest three are going to resident camp (one is doing drama camp, my 13 year old aspie surprised us and signed up for adventure camp, and Z is still trying to figure out what he wants to do). Our 6 year old will be going to day camp, which leaves my husband, our four year old and I to have our own adventures during the day. We're camping at the family campground at Calumet. My parents and friends of the family will also be there that week as well. We return after nine days, and then I have a day of child-wrangling, then my third remicade infusion. It's going to be a crazy few weeks!!! A friend is cat and house-sitting for us while her landlord is having work done on her apartment. Oh ... new underwear for all! LOL

5

Hey nym,

Sounds like a wild time for all! I am wishing that you have a wonderful time! You know, no stress, no flares. Hope you can handle the riding, my DC told me to stop every 30-60 miles/minutes to get out, stand up straight, and walk around, but if I take enough morphine to tolerate that kind of trip, there is no standing up or walking around! LOL!!

You know, you may want to consider a car top carrier for all of that! They're wonderful, not too expensive, surely Wal-mart would have them, just a thought in case you have a space crisis, Uhaul has them for rent too, I've had to rent/buy them for a trip home twice if I recall correctly. Things never seem to fit as well going home.

We're near Antietam Battle field, or are you going to Gettysburg? Inner harbor is great, the aquarium is wonderful, but word to the wise, too many steps, my brother and I took my granddaughters when they were little, had to check the strollers and carry them in their backpacks, that was when I still had a back! Don't think you will run into that at the Science center though. Anyway, it's great fun there, we're about 70 miles west of Baltimore. FYI Baltimore Inner harbor is great fun, it is just not a place you want to be after dark.

I can give you a phone number if that might make you feel a little safer knowing someone in the area. Let me know, no problem either way. Personally I would rather have someone and not need them, than need them and not have them.

SK

Oh boy, nothing like new underwear! LOL!!

6

I don’t know if it would make a huge difference for you in the car, but yesterday, I bought an electric heat & vibrating massage seat cover that comes with a car adapter. I tried it yesterday and it helps me some. I hope your vacation goes well. It’s scary traveling. I know how you feel…


SK said:

Hey nym,

Sounds like a wild time for all! I am wishing that you have a wonderful time! You know, no stress, no flares. Hope you can handle the riding, my DC told me to stop every 30-60 miles/minutes to get out, stand up straight, and walk around, but if I take enough morphine to tolerate that kind of trip, there is no standing up or walking around! LOL!!

You know, you may want to consider a car top carrier for all of that! They’re wonderful, not too expensive, surely Wal-mart would have them, just a thought in case you have a space crisis, Uhaul has them for rent too, I’ve had to rent/buy them for a trip home twice if I recall correctly. Things never seem to fit as well going home.

We’re near Antietam Battle field, or are you going to Gettysburg? Inner harbor is great, the aquarium is wonderful, but word to the wise, too many steps, my brother and I took my granddaughters when they were little, had to check the strollers and carry them in their backpacks, that was when I still had a back! Don’t think you will run into that at the Science center though. Anyway, it’s great fun there, we’re about 70 miles west of Baltimore. FYI Baltimore Inner harbor is great fun, it is just not a place you want to be after dark.

I can give you a phone number if that might make you feel a little safer knowing someone in the area. Let me know, no problem either way. Personally I would rather have someone and not need them, than need them and not have them.

SK

Oh boy, nothing like new underwear! LOL!!

7

Am supposed to be job hunting...

8

After careful consideration., I just don't think I'm ready for a big trip to Portland, OR. However, I'm committed to going to a homeschool conference this month in Fredricksburg, VA from Greenville, NC. I decided to do the homeschool conference because it will be the first time I can attend in all these years as a regular person, not a support staff, a workshop presenter, or a group representative for Special Needs Homeschoolers. I'll be sharing a ride and can zone out on Mtx day and let the other gal drive. I'm excited for the opportunity. This whole PsA flare experience is just so new, and everyday is so unpredictable now. I really need to feel some results from the med first before planning a big trip, Especially since it seems that Hubs is getting quickly frustrated with me. I don't complain, and I don't even like to tell him I hurt, even when he asks because he just gives me this "snap out of it" kind of look. I was hoping to see some results by now, but nothing so far. I thought we may try to go to DC as a family. I'm not scared to travel at this point, just resigned to the fact that I've got limitations while this flare is going on. If the meds and diet start to work, I'd love to go back to Pittsburgh and visit my family and friends. It is a 11.5 hour drive with 2 kids and 2 dogs. I made that trip about 3 times last year. I have trouble with 1.5 hours in a car now. Time will tell. Remaining hopeful.

tntlamb said:

So up date us on the vacation plan Nym...... Are you doing new underwear or old????

And is Dmara going to Portland?????

I'm going nowwhere (unless I take a break running in circles....)

9

Well, I'm watching my homeschool friend's kids (4 of them) while she is in for surgery today.

I'm supposed to be getting dinner prepped while the 22 mo. old is napping, but I just left the keyboard and came back to bandage a shin from a bicycle mishap. (did I mention I've got 3 extra boys on top of my 2 today?) Thankfully the 22 month old is a sweet little girl. I never knew what it was like to have a girl around. : ) She "helped" me with lunch today...so sweet.

Anyway, the laundry basket of whites is beckoning me to come forth and fold.

I should take a Tramadol, but I cannot remember when I took the last one.

I should be correcting math papers from both sons.

I should have brushed my hair.

I should have taken a longer nap while 'A' is down for hers.

Things I DID do: fix a one year old billing issue with our previous utility company who messed up.

Mailed my Dad his Father's Day card

Made lunch

did 3 loads of laundry

helped the 2 older boys research how to fletch arrows the primitive way (and they used duct tape anyway)

8 trips to the bathroom with 'A' who is learning to potty (only 2 false alarms)

remembered to cancel the dog's shots for this afternoon

reminded hubs of the HOA meeting tonight and the scout campout this weekend.

stopped a spray bottle water battle in the boys bedroom

...and a partridge in a pear tree!

The kids are all spending the night tonight.

Fun stuff, and times I will cherish, though I know I will feel it tomorrow. I used to be able to go non-stop like this all the time with one hand tied behind my back. LOL now I don't need to "tie my hand" as it is already kinda useless these days.

10

I'm supposed to be asleep, it's almost one AM here in India, but I'm just so excited about finding soooo much information and so many stories about PsA that it looks like I'm gonna be up all night.

11

I should be cleaning my house. However, I am resting for the next hour.

I have already gone to the bank, then the thrift store. Picked up three kids, took them all to the dentist (2 had appointments, one just wanted to hang out because she loves it there!), then to the grocery store for a few things. Then home, put groceries away, and made lunch. I then packed some more of the kids' clothes, sorted laundry, and caught up with some stuff online. I still need to make dinner, then go to choir rehearsal.

12

SK ... I'd love your number if you don't mind. Thanks so much! It will be nice to have just in case - if something happens, my grand-in-laws really can't help out much. We've been to Inner Harbor many times before. My husband grew up visiting his grandparents in Pasadena many weekends throughout the Summer. My kids LOVE the Science Center and the National Aquarium - we get into the Science Center free with reciprocal admission through our Children's Museum membership. :)

Wens - I'll definitely have to take a look at them - great idea!

DMaraJade - Sounds like you had/have your hands full!!!! Don't forget to take care of yourself!!!

Anisha - I hope you get some sleep!