Monday, May 23, 2011

Heigh-Ho, Heigh-Ho It's off to work we go...Part 2

The logistics of staying gainfully employed with ra isn't just knowing the "hard facts" of the law or the fine print in insurance polices. It also involves your ability to get up at all and to keep moving. And we all know that with ra, just doing that can be impossible at times.

Even to this day, I still use many of these hints to help me get going or to keep me moving.  As with all things ra, what works for me might not work for you. All I can offer is the hope that maybe one of these tips will help you in some way to get to whatever it is you want to do. Even if it isn't a job.

After being diagnosed with ra, I was forced to set my alarm several hours earlier. Why you may ask (although I am suspecting you may already have guessed)? To take my medications and give them time to kick in before I had to get out of bed.  My ra kept me in such pain, early on, that I had no choice. If I didn't make sure that all my medications where fully working, I couldn't put one foot on the floor. And I was desperate to keep my job and to keep going.

Ahhhhh...the bliss of water. Yes, the joy of standing under a hot shower to loosen up those oh so stiff joints. A good hot shower in the morning definitely got me a tad bit more revved up. But it does add to the prep time. I also always picked out my clothes * the night before (as well as my children's) and prepped all of our lunches. I purchased a timed coffee maker so I could prep the coffee the night before as well. This way, coffee was freshly brewed and waiting for me.

Breakfast usually consisted of cereal, oatmeal or possibly quiche (if I had previously double batch cooked). I also tried to keep fresh washed fruit available.

Guys you are so lucky! Ahhhhh...the dreaded hair and makeup. For this I usually pulled my hair back into a ponytail and I was pretty minimalistic with the makeup. A touch of eye shadow, mascara, rouge and lipstick did it for me. Back when I was working they hadn't come out with Bare Minerals which I swear by now. And for those that insist on blow drying your hair, there are blow dryer devices that some swear by (a stand of sorts so that you don't have to hold the blow dryer in your hands).

My son had the job of clearing the table and stacking the dishwasher while I gathered my daughter, 7 at the time, to walk her to the bus stop. My son walked to high school on his own. He was 17 at the time of my ra diagnoses.

Next I headed onto the 5 freeway running between Valencia and Burbank, Ca.  At that time, I owned a Sabb with a stick shift. Needless to say, one of the very first things I wanted to do was get a car with automatic transmission. We couldn't afford one at the time. Oh how I wish we could!

I know that one of the most frustrating things for me were doctor appointments. None of the rheumatologists in the area stayed open past 5pm. Why? Don't they realize that patients work? Don't they realize how difficult it is to juggle a job, child care and getting to their offices for followup visits, lab work, etc.?  I was lucky in the sense that I could play around with my start and finish time at work. Not flex time per se but something like that. Unfortunately, when I did switch my hours I also had to juggle the care for my 7 year old. My husband worked 24/7 and I swear during those years I was a single parent. Ironically, this practice of closing the doctor's office at 5pm still seems to be prevalent.  And if their office is open past 5pm, it is almost impossible to get an appointment because so many people need later hours. Duh! Hint to rheumatologists or any doctor for that matter!

Think me crazy if you will, but I often went out in my car for lunch to take a nap. I used the excuse that I needed quite time. Truth be told, I was exhausted and needed to sleep. I had a portable alarm clock. We have cell phones now with alarms that will work just fine. And my car was parked in a safe area where I didn't have to worry.

My cubicle, or office, was as ergonomic as I could make it.  I also would get up and stretch, walk around, find any excuse to move every hour so I didn't become like the tin man stuck in my seat. I even kept chemical hand warmers in my desk drawer. These are usually used by hunters for frigid weather. I used them to ease the pain in my hands when they were at their worst.



Twelve years later, I tend to prefer ice packs on my hands and wrists. You may want to rotate between the two (heat and cold) depending on what works best for your individual relief.

Driving home was always a challenge for me. A big challenge because I was so exhausted by then I feared falling asleep behind the wheel. I kept the a/c pumped up and the music pretty loud. I also would sing, talk to myself and yes, tap my face at times to keep awake. And of course, I always had that extra caffeine boost before I left work.

Once home, after hugging the kids, I would crash. Literally. From the sofa I would help with homework or take a nap.

Dinner was usually me reheating something I had double batched cooked from the weekend. And yes, at times I did bring food home from a drive thru or order pizza delivered. We gotta do what we gotta do to keep working.

In hind sight, I wish I had hired a housekeeper. I kept telling myself we couldn't afford it and we probably couldn't. Even one day a week or one day every other week would have been a immense help.  My children have always been very helpful and pitched in all the time but having someone to do the laundry and change the beds would have been such a relief. If you can afford it, do it.

And my last tip for the day...


* For women's business clothing I highly recommend the pant suit. I always tried to buy clothes I could wash as we were tight on money and I have a problem with dry cleaning smells. But if you can afford dry cleaning, by all means buy clothes that require dry cleaning. That is one less chore you have to take on. I also purchased business shirts that required no ironing. For me it was either a wrinkle free business shirt, a shell type blouse (used on days when I couldn't button a thing) or turtleneck in the colder weather. And always...flat shoes. After ra I could never wear heels and even on my best day, my feet just couldn't handle them. The "best shoes" for ra feet needs to be an entire post of its own :-)  We women sure do love our shoes!

So the short of this post is:
* Be sure you let your meds kick in before starting your day
* Take a shower in the morning if you can to loosen up those joints
* Keep breakfast simple
* Use a timed coffee maker so you can prep the coffee the night before
* Keep hair styles simple and consider makeup that has dual purpose
* Buy clothes that don't require ironing and have as few buttons as possible
* If possible, improve your work environment to accommodate your ra
* Use heat and/or ice to relieve joint pain
* Drive a car that is easy on the joints (automatic transmission number one on the list)
* Hire a housekeeper, lawn care, child care help...whatever help you can afford to keep your job
* Find a doctor that has evening hours or one that fits your schedule not theirs
* Order in, do drive through (until your medications allow you to cook more) or double batch cook
* Divvy up the chores and responsibilities among family members (you are family and should share the responsibilities)

4 comments:

Dutch said...

I was just diagnosed with ra 10 months ago & I have a daughter that is going to be 17 in a few weeks. I can't imagine raising young children & also working. My hats off to you for being about to do everything. Thanks for all the suggestions. I really appreciate it.

Deb aka murphthesurf said...

Thank you for your kind words and you are so welcome! When I was first diagnosed with ra my youngest was just 7 at the time. I have had ra for 12 years now, she is now 19. The main reason I decided to write this blog was to hopefully "hand over" what it took me 12 years to learn. I am forever searching for easier ways to do it all with ra. The longer I have ra the more I realize just how much easier I need to make my life :-)

tye66dragonz said...

Good morning, my name is Teresa, my doctor ran my bloodwork and I'm going to be seeing a rheumatologist soon. I think i have had this for last 11 years. I learned to just grin and bear it. But for the last 3 the pain has been unbearable. I can't even pretend i can fake it till I make it anymore. My hands and feet give me sooo much grief. Thank you for all your tips. I've no choice but to figure out some on my own. What bothers me most is I have 2 yorkies I love to walk and play and groom. Their leashes are hell on my joints and we get tangled up and fall in a heap at the park. I just laugh and we wrestle. My husband was quite impatient with my lack of coordination but he is more understanding now I think. My family doctor put me on prednisone for now it helps. Thank you for sharing your story, you have given ne strength.

Deb aka murphthesurf said...

tye66-I am soooo glad you are getting to a rheumatologist. Getting on the correct DMRADS can help with the progression (slow it down some hopefully) and with the pain. 11 years is a long time to go without treatment and my heart goes out to you with the pain you have right now. I had to chuckle about the yorkie story...laughing with you/not at you of course! I have two kitties but know how caring for animals with ra can be such a challenge. And did anyone say Yorkie training? Ever consider taking your Yorkies for training somewhere on how to behave on a leash. Not sure the cost but maybe it might be worth it. They shouldn't be pulling on you while walking and the only thing to fix that is to change their behavior or fence in a yard where they can roam free..lol! Yup...Yorkie training has my vote. And pregnisone is that med we love to hate. Works great but so many docs hate to use it long term. Hope you get diagnosed and on some meds that will help you! I look forward to seeing your comments on my blog. People like you and the others here give me the INSPIRATION every single day. The BEST pain med I know about :-)