A Day in the Life – Then

Contrasting what my life is like now, compared to when I was diagnosed, the difference is striking.

Sleeping was hard. My hips hurt so much that I finally bought those egg-crate shaped foam cushions for some extra-soft padding.  One helped, but I found that two layers were even better.  When I managed to sleep despite the hip pain, my body’s temperature regulation would malfunction.  It was almost like having a fever.  Sometimes I’d feel like I was freezing, but other times I’d wake up drenched in sweat.  Sleeping on a large bath towel was a necessity if I didn’t want to have to change the bedding daily. Normally I’d only get to sleep 2-3 hours at a time before waking soaked, or shivering, or by a toddler who needed some middle-of-the-night TLC.

Upon waking in the mornings, I’d work my hands open and closed, first attempting to make a fist, then opening my hands and trying to straighten my fingers. Back and forth, back and forth, until finally my hands no longer felt swollen and the fingers would move as I wanted them to move.

I’d lay there waiting until my husband went to shower, then I’d roll over and slide out of bed.  As soon as my feet hit the floor, I’d yelp and fall back onto the bed.  Then, after recovering from the pain, I’d gingerly lower my feet to the floor and gradually add weight — a little at a time — until I could stand.

Once vertical, I’d shuffle to the computer and sit there, checking email and catching up with friends’ & relatives’ Facebook pages while awaiting my turn for the morning ablutions routine.  While sitting at the computer, occasionally I’d lean forward and rest an elbow on my desktop, then quickly jerk my arm back while searching fruitlessly for the needle or push-pin or whatever it was that had jabbed me.

In time I discovered tricks to make mornings easier:  sitting down in the shower, staying in the shower to comb my hair before rinsing out the conditioner, slipping into a terry-cloth robe as a simple way to dry off (no more trying to reach my back with a towel), setting clothes out the night before instead of having to bend down to reach low dresser drawers first thing in the morning when I was stiff, and rearranging the closet so that all my clothes were on the waist-high rods (my husband’s shirts and slacks got moved to the top because his shoulders work just fine).

Eventually I’d make my way down the stairs.  The occasional stab of pain in my knees would make me think of my father, and how (even in his 40’s) he’d joke about being “old and decrepit.”  It’s not quite so funny when you’re the one who seems to be falling apart prematurely.

On his way out the door, my husband would tell me, “I love you. Don’t overdo it today!”  Then I’d sit down to figure out exactly how much I might be able to accomplish. That usually involved examining both the chore list and the calendar to see what was most pressing.  I knew that if any errands had to be run, they had to be done between 9 and noon; I couldn’t have the kids ready to leave before 9:00, and I’d be out of energy by noon.  Another constraint was that I could go a maximum of three places; after that, I would be too exhausted.  Little did I know that things would get worse.

I recall going to see my grandfather in eastern Washington one weekend. It was a miniature family reunion, and although it was great to see people, all I’d done was sit and talk, but I was wiped out. On the last day, we cleaned up our meeting hall and everyone was ready to leave right after lunch. Me, though?  I was ready for a nap and dreaded having to drive back across the mountains when all I wanted to do was collapse.  When it was time to get into the car, my daughter got sick.  I felt awful for her, but a little part of me was thrilled to phone my husband and tell him we were staying another night.  We got to sit in the hotel room and rest, and I was fresh for our drive home the next morning.

Things got worse.  I was teaching swimming lessons two half-days a week, and was also head of the kids’ program at our church’s midweek service. What people didn’t realize was that I was getting worse and couldn’t do anything else.  I would drag myself to the pool, then go home and collapse.  Aside from those teaching commitments, I didn’t leave the house. I went from three-errands a day to three a week.

Back then, it was hard to get things done.  When you have the flu, you have no energy.  It was just like that.  I could wash the laundry one day and fold it the next, but never get it all done in one day.  I’d make a grocery list and email it to my husband, who would stop and do the shopping on his way home from work.  Just about all the meals went into a crockpot right after breakfast, because by mid-afternoon I’d be too tired to cook supper.  If I didn’t manage to get the crockpot started, everyone knew we’d be eating either beef-n-beans or pancakes (because I can whip up a batch of pancakes nearly as fast as you can pour a bowl of cold cereal).  We had always had a garden, but that year never got one planted. I was perpetually exhausted.

Exhausted… and confused. Why did it feel like there was something sharp poking my elbows even though there was nothing there? Why did raising my arms make my shoulders hurt? Why were my feet and hands swollen in the mornings? Why did my hips hurt so much?

That was then.

Continue to Part 2

Dear Walgreens Specialty Pharmacy

Your “service” stinks and I hate you!

If I take a prescription to my local pharmacy before 8 p.m., the pharmacist orders my meds and I can pick them up the next day. Simple, straightforward, reasonable.

Your pharmacy, Walgreens, is a different story.  After speaking with your representative, I faxed you my prescription on Wednesday afternoon.  You should have phoned me promptly to arrange delivery of my meds. What happened?

  • Wednesday:  nothing
  • Thursday:  nothing
  • Friday:  nothing
  • Weekend: nothing
  • Monday: you contacted my doctor

Why would you contact my doctor on Monday when you were supposed to contact me last Wednesday? Will you be compensating my doctor’s office for the time they must expend in dealing with your ineptitude?

I am only ordering from you because my insurance refuses to pay my local pharmacy, and I can’t afford $3,000 every four weeks.

You should have delivered my medicine by now, but I have nothing. Your service is deplorable.

As far as I am concerned, everyone should avoid Walgreen Specialty Pharmacy, because Walgreens Specialty Pharmacy is difficult to work with and does not fill prescriptions in a timely manner.

Life Goes On

First, a big thank you to the people at Healthline for their kind words, and including ∞ itis in their list of Best Rheumatoid Arthritis Blogs of 2014.  Thanks also to those readers who continue to follow despite my sporadic posting of late.

To those who emailed and asked how I’m doing, well… I’ve been better, but I’m on still on the top side of the grass. Our family has now met our annual $1,500 deductible on two family members.

My shoulders have been bothering me for quite some time (even worse than usual), and then my back joined in. For a while my back was so bad that the muscles would spasm any time I moved. The first time was quite scary, and I wondered if I was having a heart attack. Fortunately, that was not the case.  The pain, however, made getting into and out of bed impossible, so since December I’ve been sleeping in a recliner.  With flexeril and rest the muscles finally stopped spasming, but I still have not been able to sleep in my bed.

Based on my discussion with my rheumatologist’s PA (which is a whole ‘nother rant), I thought the treatment was going to be a referral for PT and a quick steroid taper; then the MD came in and decided that all we needed was spine x-rays. I swear that doctor has ordered more x-rays than I ever thought I’d see in a lifetime.

It doesn’t seem to be asking too much to feel well enough to live my life with some semblance of normalcy. Rheumatologists tend to focus on different things than I do. She’s wondering if what I have is PsA instead of RA (which I have thought from very early on), and recommended a biopsy of my rash.  When I reminded her that the dermatologist said a biopsy isn’t necessary because it’s definitely nummular dermatitis, not psoriasis, she suggested a second opinion.  However, it will not affect my treatment one way or the other; it’s just to satisfy her academic curiosity.

Umm… No.  All procedures have risks.  If she wants to foot the bill to satisfy her curiosity, then we could discuss the risks involved, but I’m not going to take on additional risk and expense when it won’t make any difference in my treatment.

This means that I left the rheumatologists office still feeling crummy, with orders to be irradiated again, and quite frustrated about this entire situation.  My family physician saw me a week later, injected one of my shoulders with kenalog, ordered an x-ray (!) of said shoulder, and wrote a referral to PT.  Interestingly enough, the shoulder injection made my back feel better.  The physical therapist suspects that the back pain is due to compensating for my shoulder issues.

Thanks to PPACA, my insurance is so fussy about PT that there have been numerous complaints filed with the insurance commissioner. I can only have five or six visits, then have to have a new evaluation and wait for them to decide whether or not to approve another handful of visits.  This means that every time a person starts to make progress, they then go two weeks without PT, negating all benefit of the previous visits.

It’s all quite frustrating.  In the past, three or four weeks of PT were all that was needed for me to feel much better — at least enough that I could be released to do exercises on my own at home.  Now, my shoulders hurt worse, and in more places, and the biceps have both started hurting, too (which the PT says it because the biceps are doing work that the rotator cuff muscles should be doing). I’ve even started having trouble with one of my elbows, which makes the PT wonder if something is torn. I really don’t need the expense of an MRI on top of everything else!

Apparently, the fact that I’ve been doing some gardening despite “claiming” that my shoulders hurt is an issue for the insurance company.  It’s not like I’m swimming or rock climbing! I’m making sure that my family will have food to eat!

Despite RA, I still have a life. My two sons still at home played basketball this winter, followed by baseball this spring. Now the high school is gearing up for summer basketball and the baseball coach wants the kids to play $500 summer ball which conflicts with $150 basketball. My younger son is also playing on a year-round select basketball team.  If you think that means I have been driving from one sporting event to the next and wondering if I need to get a job to pay for all this, you’d be right.  Due to these sports, somehow I also ended up in the high school booster club.  Last season there were some decisions made with which I disagreed, so now I’m juggling meetings on top of everything else, trying to have a say in what happens.

And life goes on. I’m still figuring out how to cope, how to do things with the least expenditure of energy (so that I’ll have energy left for fun things like watching my kids’ sports teams), and how to have a full, un-whiney life with RA.