Viva la Vida?

A very important list for those with Rheumatoid Arthritis, and/or Lupus, and/or Fibromyalgia. (aww hell, for any of the auto-immune arthritic diseases)

How not to Cripple Yourself

1. Do not scrub your bathroom tub tile walls until your hands can no longer hold the brush, and your back appears to be stuck in the bent position for the bottom half.

2. Do not do wash in the middle of the night after a long day.

3. Do not do a lot of writing and errands the next day, forgetting that sometimes the swelling and pain takes a while to set in.

4. DO try to hide the fact that you are crying in frustration and pain for hours and hours.

5. DO take pain killers before you get to that point.

6. DO text/talk with someone who understands and asks the right questions and doesn't say dumb things like 'It will be ok.' (Uncle K, thank you)

7. DO hope/pray/light candles etc that you will get an appointment soon with a new rheumatologist since you really don't like the one you have now.

8. DO go for the yummy! ;-)

9. DO play silly computer or iphones games to distract yourself.

10. DO remember that it won't be ok, but it will get better than right now.

be well...

Surrender

I have my own version of Fantasy Island.

I am on a gorgeous tropical island. There is no Tatoo, just me screaming to the heavens, 'Da pain, Da pain!'

With that, a shirtless Wolverine (Hugh Jackman, for the uninitiated in comic based movies) arrives at my side, waves his beefcake arms and...

POOF!

The pain disappears, I return to my pre-diseases self (lose near about 80 lbs and some wrinkles), turn to my Hubby and kids laughing, and we head to the beach to the live happily ever after.

Yeah. NOT LIKELY TO HAPPEN.

So, instead, I realize today that yes, after suffering with this nightmare flare for the last week and a half (although it has been building longer) I will give in and go for the prednisone taper.

Surrender.

I hate taking the vicodin but I have been and you know its bad when doubling up ain't cutting it. That was always the benchmark that my original rheumy recommended.

For those who don't like TMI, avert your eyes now, for the brave, stay for a glimpse more.

It has been so bad that I have been avoiding washing my hair. Today, I suffered thru it the first time since Sunday. It was awful. Elbows screaming while shampooing and rinsing and conditioning. Feet hurting from the tension of clinging to my balance.

Thank heavens I am blond and sparse in the hair department. No leg shaving happening this week either. I could go for about 3 weeks before anyone would ever notice. BUT, I know.

Usually nothing stops me from shaving the 15 stubbly hairs under my arm, because Hubby HATES hair. It's a thing with him. Actually gags when they show the girls on Survivor with underarm hair. I laugh at him. Anyhow, I always, always, always do that shave - unless it is in the midst of the flare from hell.

Yep. No shaving the pits today. Bending the elbows more than I had to do for the hair? No way. Holding that small handle in my sore hands? Nah uh. Not gonna happen.

Yep. Time to surrender.

Thankfully, I have the prednisone in the house. Will probably do 60-40-30-20-10 -5mgs. I won't sleep the first night because of the jitters. Second night, I may get some winks of sleep but it will be fitful and full of nightmares. By 24 hours in I will become voraciously hungry. And, thirsty which means lots of potty trips. Ugh.

BUT, but about day 3 I will start to realize... wow, my joints are not as sore and I am able to move better and with less pain.

Yay.

New rheumy thinks this is more Lupus and Fibro than RA. Old rheumy thought more RA, maybe lupus, probably Fibro too.

I think it all SUCKS.

Surrender.

Thank heavens for the COFFEE.

be well...

Thankful Thursday

What started out to be a crazy overscheduled week really settled down rather nicely!

I went to the new rheumatologist yesterday with Hubby. I was not happy to have to go to a male doc, as I have found that female docs tend to be more understanding and in tune. However, I found the new rheumy very understanding and he really listened and heard all my concerns.

It was actually great having a new set of eyes on my issues. He did xrays and a sonogram of my hands and wrists, right there in the office, along with a complete blood workup! I loved one stop shopping!! I usually have to run to one place for xrays and another for blood.

I have a lot of neuropathy issues, always have, his fresh eyes have given us a new plan of attack as well as another diagnosis. He is confident that Fibromyalgia is also rearing its ugly head in my body. Not surprising as it goes hand in hand with Lupus and RA.

The plan is to try Lyrica which will address the neuropathies. The numbing, tingling, weakness and balance issues. As I have mentioned, MS has been ruled out before, and we are sticking with that assumption unless there is a reason to revisit it.

Also to be added will be Provigil, a medication that will help with what to me is the most debilitating part of the disease - fatigue. And, also the cognitive issues. Hopefully, I will be sleeping better with Lyrica and the Provigil will do its magic and I will be like a new person in a few months!

I am happy to have a plan of attack! And, I visit him again on 12/1.

Okay... on to my blessings! :-)

1. New rheumy. So far so good! And, a plan. I like plans.

2. Hubby! Home with me yesterday for the doctors, which was a very long comprehensive 3 hour visit. BUT, today he surprised me by staying home again! Yay!

3. Piano. Pumpkin is having her lesson as I type this... I love it! Christmas carols... have to get ready!

4. Hammer. We have spent this week preparing his application for Eagle Scout and planning his project. Part of that process was gathering letters of recommendation for Hammer. There has been an overwhelming outpouring of love and respect for him. :-)

Kathy, Karol, Dave, Bill, K, you all overwhelmed me with your letters. Thank you. Mom and Dad and Hubby... perfect and just as I expected... we have such a special boy and I am honored that he is ours.

5. Fuzzy. In the last week or so, he has been trying harder and pulling up into A's. If he wanted to he could have straight 100's... it's all about what you put into it, he has the ability. Just needs to work it!

6. Coffee!!!! After months of coping with our Keurig coffee maker malfunctioning and needing to be tweaked each and every day... My dad gifted Hubby and I with a new one for our anniversary - early! YOU ROCK, Dad! ;-)

Well, I think I have taken up enough of your time!

Go to go farm! LOL

be well...