Part of the System

This is going to be a bit of a rant. You're welcome to skip over today's post.

I had a CT scan of my colon to better help the gastroenterologist, now added to my health team, determine if I have problems related to the recent bout of diverticulitis. The fact that I have to add another doctor to my list of health care professionals is annoying enough. A double annoyance was the need for the scan. The insurance stepped in and sent me half-way across the suburbs to an imaging center not affiliated with my doctor. Their hours for scans were not conducive to my schedule and I had to be more than a little firm that I can't just drop my life for a CT scan for a non-life threatening medical condition. They were not happy but we worked out a time I could come. The technicians were very nice. The front office staff, not so much.

Now comes word there are cysts which need to be looked at. These require ultrasounds, two, to be exact. Fortunately, ultrasounds do not require insurance approval so I can go to the center I know and where they have hours conducive to working people. But I'm told the cysts are benign so I'm puzzling over the need to have the scans at all. "Because you have RA," I'm told, "we need to watch these things." Seriously?

And, speaking of RA, I'm supposed to be taking Orencia. While the Humira gave me pain-free days, it wasn't doing enough to stop joint damage, according to Dr. Francis. I felt fantastic, as you know, if you've read the blog for any length of time. To me, being pain-free is my number 1 quality of life issue. If the joints are being damaged, wouldn't I have pain, or is the Humira masking that? I don't know the answer to that question, but I'll trust Dr. Francis' judgement and try the Orencia. Might as well asked for the moon.

The pharmacy I had been using is not where the insurance sent me for the Orencia. The first contact with the new pharmacy was pleasant, but the gentleman giving me the hours they are open neglected to tell me the time zone. I had been dealing with a pharmacy in Atlanta. I knew their hours. Just saying you're open 8 a.m. to 5 p.m. doesn't help me. That could be Central Time or Hawaiian Time, for all I knew. Add to this, the amount of travel I've had to do and I'm not home much before 5:30, my time. Those days I haven't been traveling, I don't remember that I need to call this pharmacy because I have this thing called a "life" and clean underwear is more important than dealing with people on the phone.

When I do get in touch with them, I find out I have a rather large co-pay to get Orencia. There is no patient assistance for which I qualify. I'm directed to yet another number to see if they have anything.

Tests. More tests. A new doctor. New drugs. More phone calls. I feel less like a patient and more like a commodity. This is not how health care should feel.

I realize that, as one ages, more things start to simply wear out. It doesn't matter in what shape you find yourself. We're not designed for the same longevity whales achieve. There are more working parts to break. I also realize I have a chronic illness, an illness where my body turns against me. Add to that another illness which can have repercussions with my RA should I have another attack and we want to not have that. One of my friends, who has a number of issues said, "Welcome to the system. It doesn't hurt as much if you hand them your wallet and bend over." Graphic, to be sure, but perhaps not an all-together unfitting image.

I don't want more tests. I don't want to have to call 5 different places for drugs which may, or may not, let's be clear that we're not sure the Orencia is going to do what Dr. Francis wants. I don't want yet another specialist. I'm struggling with all of this because, until 2012, I rarely got sick. Honestly, I don't know how people with worse diseases than me handle a stable of doctors. I remember reading that people in the fire zones in California were told to pack up quickly and one woman grabbed her medications, all 17 of them. 17! I can't even imagine.

So tonight I have list of phone numbers, dates and times of calls and whom I talked to. I have another trip in the morning to finish up a couple of jobs and then, knock on wood, it appears there's a lull before crazy sets in again. I can stay in the office, work some overtime to complete reports and take an aspirin if my joints ache. We measure things on a "quality of life" scale. When I step back, my actual "quality" of life is good. I'd even go so far as to say "great". Yes, I have the occasional twinge, but who doesn't? I have no quarrel with the treatment I get from my doctors. They seem to be looking out for my interests, but I've always been a person who wants to go low on the medical scale. What's the lowest, cheapest thing we can do now, first, to see if it works? Then, if that doesn't work, we step up. Tests, tests and more tests. Changing drugs. Phone call after phone call is not the lowest, cheapest thing we can do. I feel sucked into a whirlpool I don't know I can get out of. That's my biggest frustration.

Beverage:  Water

Deb

"Now is the August of my discontent"

In this soliloquy, which begins Shakespeare's "Richard III", he talks about the reversal of his family's fortunes. "Now is the winter of our discontent" is the exact line. "Winter" in this case, meaning the end of problems. We all know how the play, and the real life Richard the III's, life ended.

It's been a bad month for me. "Discontent" in all it's glorious meaning, is the perfect word to describe this month. So many days have slipped away. So many photos unblogged. There is, however, a reason. I came down with diverticulitis.

On August 1st, I went shopping with Pam. We had a glorious day of laughter and friendship, as we usually do. The next day, I thought I'd eaten something bad. It continued into Monday, August 3rd. I felt like I had the flu. Lots of sleep and on Tuesday, August 4th, I was tired, but I felt reasonably fine. That "reasonably fine" feeling grew ever more tenuous. It seems as if every other day was a bad day. Pain. Excessive tiredness. I felt like my abdomen was full of gas. "If I could just fart, I'd feel better," I would say as a wave of pain overtook me. Finally, self-treating didn't seem to be working and I went to the doctor on August 12th.

I was put on Cipro and Flagyl, two strong antibiotics. One of the problems with an infection is my compromised immune system thanks to the RA. I had to go off all my RA meds and carefully watch when I took my vitamins because they would counteract the Cipro. Unfortunately, one of the side effects of these two antibiotics and going off the RA drugs has been incredible tiredness. I finally gave up trying to remember when I took the Cipro so I could take the vitamins. Even little notes to myself would leave me perplexed. "Why does this say 8:10 and this one say 8:35?" Confusion is a side effect, too. I took to walking around the house with a note pad and pen, writing down what I was trying to remember. This went beyond the "Why did I come into this room?" This was an "I have no idea what I'm doing" memory issue.

Blogging was impossible. I tried, oh how I tried. There are a large number of photos to talk about. A month of photos has come and gone without a comment. I have missed me.

It took 5 days for the pain to subside. I've been off both drugs now since Saturday. I'm still tired, but I know that to be the cost of RA. I'm having twinges of pain in joints that were pain-free just a month ago. Heck, I was reveling in being pain-free. I need to mow the lawn now, after a month of not needing to do it. The idea now scares me. It won't be a 45 minute exercise. I may not be able to do it in one day. I feel I've been sent to jail and I have no "Get out free" card.

Through all of this, I've kept working. The pain wasn't so bad during the day that it interfered with work. It only got bad when I went home at night. I have been lectured about taking time for me. Perhaps I should have. I guess I'm of the mind-set that sick days are for when you're really sick and I wasn't into what I'd call "really sick" state. I did think I'd take this or that day off and then work would get crazy and I'd feel that I'd really inconvenience the office if I called off, so I didn't.

Depression set in. I have stuff all over my house, piles of stuff. I deal with a little bit but I wear out so quickly, that things don't get done and the knowledge that, just last month, none of this wouldn't be put away, mocks me. Even though part of learning to live with RA involves breaking tasks down into smaller, more manageable pieces, when I can't clean all the litter boxes because just doing one leaves me tired, that's minute pieces and even though that's what I should be doing, it depresses me when I can't do more without pain (because I'm off my RA meds) or getting overly tired.

There is a silver lining in all of this. My rheumatologist wants to change my RA medication. She feels the Humira was not stopping the progression of the disease. I measure progression by days without pain and I had a handful in July, before the diverticulitis. She measures it in a different way. So, having to go off all RA meds is good for her because we can go back to tweaking them. She wants to start me on Orencia, another injectable biologic drug. Unlike Enbrel and Humira, it's used only for RA. We're going to see if that helps. I'm not noticing any deformities in joints and, prior to getting sick, I could do a lot of things I hadn't considered before. I have another appointment for the diverticulitis on September 2nd and we'll go from there.

All of this has worn me down. I'm not eating properly or drinking adequate amounts of water. Pam had to come to my "rescue" and get me to Target to buy groceries so I would have things in the house I'd actually eat. Soup is my friend, but there are days when even that looks unappealing. I know this is a side effect and part of my brain says, "You need to eat." But the louder part says, "Shut up. She's tired. Go ahead. Sleep in the recliner." And, lately, that sleep in the recliner has involved a cat scan.

It's kind of hard to see her, but she loves to stretch out in my lap. When we sit, we can sit for upwards of 2 hours. If only the purrs of a cat would cure what ails me. Mija will often jump up next to me and demand ear scratches. With the two of them next to me, I can almost forget this set back.

It feels like I'm going up hill through molasses. I keep telling myself that the aches and pains are old familiar territory. I'm not nearly as bad as I was in 2012, when I first saw Dr. Francis and, once we get the infection cured, I'll be back on the drugs that help with the pain. Things will be back to "normal", or what passes for normal. It's just getting there that is the depressing part.

Beverage:  Water

Deb

Pain Free, Sort Of

Ah, the life of flexibility, when I can cross my legs while propping them up on my office desk and not wonder if it will take a crane to get down.

I've dealt with sciatica, an inflammation of the sciatic nerve which runs through your hip and down into your legs, since December of last year. It would flare up and then go away, depending upon how much I was moving. Aspirin would help, occasionally, but I can't take a lot of aspirin due to the other drugs I take for RA. By April, the pain was affecting how I walked, sat, slept. It hurt to roll onto my side at night to fall asleep. Sitting for a day at the computer, writing reports, was painful but getting up and moving around was worse. It just seemed to be a spiral.

Dr. Francis ordered x-rays of my lower back. I have severe arthritis in my lower back and sciatica. She ordered a regimen of physical therapy. A lot of people have PT because I couldn't get my first appointment until after I came home from my Minnesota vacation. It hurt. I have a bunch of exercises designed to strengthen muscles around my "core" and then around the hip. I found that as I did those exercises, the occasional problems with my knees eases. The pain eased. On one day, when I had PT scheduled, I was half-way through the day when I realized, I wasn't in pain anywhere, not my hands, not my feet, not my knees or hips, nothing.

That weekend, an amazing thing happened.

I mowed the entire lawn without a break, the whole thing, front and back, without stopping other than when I ran out of gas. I swear I filled the mower, but, obviously, I didn't. Not only did I mow the lawn in one pass, but I ran errands after a shower, all without pain. I decided I had earned lunch so I stopped at Culver's and brought it home.

I wound up taking a nap 2 hours after coming home from running errands, but, hey, I'll take it.

Since that weekend, I've had some achy days. The drive back from my vacation to Virginia was long. I didn't get a car with cruise control and I realize that's kind of key to my comfort. That may mean I have to pay more for a rental, but that's the way it goes. My left index finger is swollen in the morning and "clicks" when I bend it. I've had minor achy joints in both hands and my knees. The sciatica is back, but it is very mild compared to where I was when I walked in that first week of June.

You know what? I'll take this. It makes me happy not to have the pain I had in my joints. Is it all from the Humira and drug combination? Is it simply the result of physical therapy? I don't honestly know. I just know that I'm feeling better than I've felt since 2010 and these little aches are easy to dismiss. Dr. Francis is talking about a change in my medications so I'm hoping it will be a reduction. I"m okay with that.

Beverage:  Coca-Cola

Deb

Affirmation

When you live with a chronic illness, as much as you try not to let it define you, it does. Because I have RA, I build my days based upon how much energy I think I will have, how I'm feeling. If I do x, will that completely wipe me out or will I have energy for smaller things later? Can I rest in between major tasks? I try not to be defined by my RA, but the reality is that every major event and even some minor ones, call up these questions.

The guy who has mowed my lawn for the last, at least, 8 years, maybe longer, is moving out of the neighborhood. His leaving is the reason I searched for a company to mow the lawn and, when that didn't work, bought a lawn mower to do it myself. You need to understand how important this is. I get tired. I have to pace myself. I have to plan for rests. Last year, and going back to 2010, I would never have considered mowing my own lawn. My doctor's advice and care combined with switching me to Humira made the prospect of lawn work not frighten me.

I started with the back, since that's where the shed is.

I should have taken a before photo. I mowed around the side and then realized I needed a break. An hour later, I went back out and mowed the front. Here is the before photo.

Here it is after. 

The mower is now stored away in the shed.

The next time I do this, I will need to wear tennis shoes. I wore my sandals, which are sturdy and lightweight, but they felt too light on my feet. The yard is rough in places and I could feel all the rough, kind of like "The Princess and the Pea" story. 

The mower was wonderful. It started on the first pull and it's not a strained yanking. It was easy to maneuver and I felt, very much, as if I was just walking along. The self-propelled feature with the wide wheels made the back and forth across the lawn easy. It was a bit of a chore to pull up and fold down the handle, but that will come as I get used to the mower. There are different settings for the handle, too, so I need to experiment with which one is the most comfortable. The grass wasn't very long so I don't know how it will deal with longer grass. We need rain. 

You have no idea how empowering this is for me. I've been having some problems with pain in my right hip and down my right leg. X-rays show severe arthritis in my lower back. I was stiff. I was sore, but I did it. I mowed my own lawn. Chocolate chip cookie dough ice cream to celebrate? Don't mind if I do.

Beverage:  Water

Deb

A Change of Meds

There was a doctor visit in November. At that time, Dr. Francis and I discussed the state of my RA. I don't necessarily feel worse. I have little aches, but, come on, we all have those from day to day. It wasn't pain. It was an ache in a joint; a thumb, a wrist, a toe, a shoulder. On a few days, at the end of the day, I'd take an aspirin or, if I knew I would be on my feet for awhile, I'd take an aspirin at the beginning of the day. I can't take more than two aspirin in a 24 hour period and, if the need for an aspirin continues over more than 3 days, I need to call Dr. Francis. I felt I was doing well, all things considered. That Vectra test changed the perception of what I'm dealing with.

One simple number, 42, changed everything. Joking aside that it's the "universal answer to life, the universe and everything', it says I have moved into severe levels with RA. Left untreated, joint damage will occur. I'll get the bent fingers I remember a number of my great aunts having. It was time, Dr. Francis said, to add one of the newer biologic drugs to my arsenal.

At first, we tried to get Xeljanz. You might have seen their elegant black and white commercials on TV. It's attractive because it's a pill taken twice a day. It's relatively new to the biologic market. But, my insurer would not approve it. I was going to need to take one of the older established biologics and see if I have an intolerance issue with them before Xeljanz can be considered. They said I needed to start with Enbrel.

You might recognize this name if you watch sports or a lot of TV. Golfer Phil Mickelson is the celebrity spokesperson for this. He has Psoriatic Arthritis and Enbrel was developed to treat that. But it's also useful for RA and for Plaque Psoriasis. Dr. Francis has a number of patients on Enbrel and she likes it. She has fewer on Xeljanz, but they are doing well. It is newer to her than Enbrel is, so she has less experience with it. Still she went to bat for me to get what I thought would be much easier for me to take.

This comes as a pen-type injector which I need to do myself. This scared me to no end. I know of people who have to give themselves shots and I admire their fortitude. But, if I'm going to progress on, I needed to get over my fear and learn to do this. Just telling me "it's easy" is not helpful or mind settling.

For drugs like these, the data sheet rivals a small novel.

I spent last night on the phone with nurses from the pharmacy that sends me the Enbrel and with my insurance company going over the side effects. Unfortunately, there is no magic "by" date to tell me if I tolerate this without side effects. I can say that I haven't grown a third eye or have been covered in hives. One side effect to consider with the holidays approaching is that my immune system is suppressed and I will be less able to fight off colds. That means there probably aren't going to be a lot of "Aunt Debbie" hugs at Christmas, particularly if someone has the sniffles. I got the flu shot this year but am slightly worried about my health since reports are that the flu shot may not help one's immune system fight the flu. I've been informed that what is usually a 7 day battle with a cold, could be a 2 week battle for me. That's a long time to be sick. It means hand washing is huge for me and, although I like you, you might have to stand over there to talk to me. Nothing personal. Just know I don't want to be near you if you're sick.

An interesting thing about this medication is that it comes chilled.

It needs to be kept refrigerated. I had it sent to the office where we have a mini-fridge and I could keep it cold. Technically, deliveries in the winter shouldn't be affected, but the last thing I wanted was for someone to swipe the box off the front porch, too. Since the delivery is next day, I can call for a delivery on a day when I know I will be in the office to sign for it and put it in the fridge.

My first box came with all this stuff.

There are small circular band-aids, alcohol pads for cleaning the injection area and a sharps container. I'm not a bleeder and often, after having blood drawn at my RA appointments, I will forego a band-aid. But I've noticed that there is just a pin prick spot at the injection site and a band-aid is helpful for a couple hours. I don't know, yet, when I will send the sharps container back, but I like that it's small enough to sit on the shelf in the bathroom yet it appears it will hold a couple months worth of pens.

The drug itself arrives in a styrofoam cooler.

It was a perfect fit for the box and getting it out at the office involved removing the top, grabbing both sides and shaking the box so it would drop off. It fits nicely in the office fridge.

It's not very big.

A 6-pack of soda is probably all that would fit in here. The box of pens, 4 to a package, was under and on top of gel packs; 2 on top and 2 on the bottom. Since this is a month's worth of drugs and I have to do this now forever, or until something changes, the thought of all these coolers and gel packs in my house makes me weak. I was informed that, once I've been on this for 3 months and if I'm tolerating it well, I will get my 4th shipment as 3 month's worth. Well, that's still a cooler and gel packs. I don't know if I can recycle those, although the styrofoam cooler I can. The last thing I need are stacks of gel packs in my freezer, although they last a long time and keep frozen dinners frozen.

I went to the doctor's office and learned how to give myself the shot. It went okay under my doctor's nurses' watchful eye. The next week, it stung a bit when I did it on a Saturday in the bathroom. Last week, however, it didn't hurt beyond the initial pin prick. I have to take the meds out of the fridge and let them come to room temperature for at least 30 minutes. This past week, I waited 40 minutes. When I use the alcohol pads to wipe off the injection site, I need to make sure all the alcohol has evaporated or that will sting. Once I see the indicator on the pen go to solid purple, I count to 5 before removing the pen from my leg. This way I make sure all the medication has been delivered.

Do I have an immediate feeling for change? No. Yeah, I was hopeful there would be some dramatic feeling better, that this almost crushing fatigue I fight would be lifted. But, with a drug like this, my body has to get used to it being in my system and that takes time. It could take as long as 3 months. I need to be better by March so I can go back to Virginia and not be completely wiped out by the travel.

And, speaking of Virginia, they provided me with a travel pouch.

It has gel inserts. The whole thing goes into the fridge before I travel and then a month's worth of pens can be put inside the case. The pouch will keep them chilled for up to 14 hours. When I go to Virginia, I'll have this and a cooler for travel. Things you have to plan for that you didn't before.

One of the questions the nurses ask when going over the drug is if you are depressed. I've been thinking a lot about that question on my own. Am I fatigued because of something else? It comes back to no and I expressed that to the nurses. I'm tired. Both the reading I've done and Dr. Francis agree that my fatigue is due to the RA. She doesn't guarantee I will feel better, 66% of patients report an easing of symptoms, but Dr. Francis feels this is the best route to go. Once there is enough drug assisting my body in fighting this disease, then I won't feel so tired anymore.

Here I go, walking down a different road. Right now, if feels as if the road is going up and up and it's hard to climb. It's not filled with pot holes or boulders, it's just steep and I'm struggling to progress. I'm hopeful this will do the trick and give me back my energy. I miss feeling refreshed all day.

Beverage:  Water

Deb

The Cost of Tired

I have been missing here for almost a month. The girls know where I've been and have spent a lot of time with me there. Bed. Struggling to sleep and get rested.

Since coming back from a quick trip to Virginia at the end of October, I've felt myself slide. It's not that I'm in pain. There isn't "pain" associated with my RA. It's more a case of a dull ache here and there, but a dull ache every day. Maybe it's the left thumb or the right wrist or my right shoulder or my left pinkie finger. It's never enough to say, "Oh wow. Does that hurt." I can work through it, but it's there. And please understand that I'm not trying to pull pity out of you. I'm merely recounting what's going on so you know where I've been for the last nearly a month.

One of the markers for RA is fatigue. It figures. Your body is fighting yourself, attacking your joints and your joints are trying to fight back. That internal war just wears out your body, making sleep attractive. RA sufferers are a tired lot and when it gets into the severe area, where mine is, fatigue is as common as sunshine.

Also, we have been extraordinarily busy at work. Since Labor Day weekend, we have received two projects requiring weeks of work in the city. Now, I love the city. I enjoy driving in. You've seen my photos of sunrise over Lake Michigan and over Chicago. I've had a lot of overtime and more is needed as I do the reports for the field time. But, when you suffer from RA, getting up early, working late, being on your feet as much as I have been, comes with a price. That price is added fatigue on top of what you already experience just in fighting the disease. I come home after 12 hours on the job, get the mail, sit in the recliner, add a cat and boom, it's 2 hours later and nothing's been accomplished. I pick one thing to do, say a load of laundry, do that and then I have to sit, which leads to dozing, which leads to, "I should just go to bed". It becomes a sorry cycle.

This can also lead to depression because you just don't have the energy to do anything other than what absolutely has to be done. I'm out of pants. I have to do laundry. Dishes pile up in the sink until something smells. Then, it takes 3 days to do them because I only have the energy for a couple loads. At least they are stacked on the stove. That's good, right? Not really. I come in the back door and have to walk right by the pile which reminds me that I need to do another couple of loads which I don't have the energy to do.

So, I make a conscious choice NOT to eat at night or eat something which doesn't need much in the way of prep time or dishes. Peanut butter  or turkey and cheese sandwiches have been my meal of choice. Frankly, I don't want to fix anything and I've gone to bed without supper many, many times in the last month because I'm too tired to even unscrew the lid off a jar of peanut butter, let alone cook the hamburger I took out of the freezer so I could make meatball vegetable soup. It's a great cold weather soup and it's reasonably easy to make, but not as easy as peanut butter on bread which is harder than just having a cup of tea and calling it a night. Yes, my doctor is not pleased.

I find that I spend much more money eating out. As you know, Dunkin' Donuts is a favorite place and it's been frequently a lot in the last month. Just this week, I've gone there 3 times. A couple of donuts and a large hot tea and I'm set for hours. I also frequent Panera but breakfast there is more expensive as their pastries are more expensive. Still, going to both frequently means I've earned free drinks both places, which does cushion the cost. I also have another person almost "trained" at Dunkin' as to what I get when I walk in. Let's not talk about the healthiness of this breakfast choice.

Lunch is also a conundrum. If I'm out in the field, I can justify having lunch expensed to the client. It's built into the cost of the work. But if I'm sitting at my desk working on reports or processing data, I have to foot the bill for lunch. Recognizing my tendency to take an "easy" way out of procuring food, I bought a bunch of frozen dinners and yogurt which could be grabbing in the morning and eaten for lunch. The operative word in that sentence is "could". When I get up with less than an hour to be at the office, even grabbing a frozen dinner and yogurt doesn't happen. So, when it gets to be 12:45 and I realize I need to eat lunch, it's off to Panera or Subway. There are a lot of choices near the office, but those are my go-to places and are far more healthy than a lot of the other places. With a hearty lunch, I can go the rest of the day without feeling the need to eat, not that that's a good thing, mind you.

All of this leads to feelings of inadequacy. I can't care for myself adequately. I look at the girls. Am I doing right by them? I have Christmas gifts I want to sew yet looking at the patterns stacked neatly on the table in the living room leaves me feeling exhausted and I haven't done anything with them. My house is dirty. I need to clean. The best I can do is sweep a room with a glance and try not to write my name in the dust. All these things I want to do get tossed aside because I have no energy. And let's not consider the cost of breakfasts and lunches out. Uh oh. That's a very real effect of not feeling that I can adequately care for myself.

There was a doctor's visit on November 14th. We went over all of this. You know how, sometimes, you don't feel you can tell your doctor everything you're going through. You're afraid that you'll be labeled a scaredy-cat or obstinate or who knows what else. I don't want to be thought of as a hypochondriac. I know people who fit this description and that's not what I want to be. But I've come to see that telling Dr. Francis everything, all the aches, pains, bumps, non-eating, bad sleeping, falling asleep at my desk at 10 a.m. leads to frank discussions of what's going on and what can be done to help me. She put her hand on my arm and said, "You have to stop trying to tough it out. That's not working well, is it?" No, it's not. I think I'm more tired when I try to simply push on than when I admit that it's not working. I find it so hard to ask for help, so hard to say, "I can't do this".

There was, at the end of November, an article in an online RA newsletter I receive which talks about the tired. That appears to be the number one issue people with RA report. Exercise can give you more energy, but you need a certain pool of energy to begin with to even attempt the thought of walking or running or swimming or, man, that makes me tired just thinking about it. The author of the article said we know we are tired so we, wisely, scale back our expectations. So instead of, "I'm going to clean the house", we decide, "I'm going to clean the bathroom". But, when we are fatigued, cleaning the entire bathroom becomes an exercise in futility which leads to a cycle of mental shaming and sadness. She said that you need to pare a project down even further. Instead of "I'll clean the bathroom", it needs to be, "I'll clean off the mirror", "I'll clean off the sink", "I'll wash the floor". Yes, this may mean the project goes from what you could do in 2 hours to what I need a week to accomplish, but this is what I have to do.

I also need to give myself permission to nap. I can't do it at work, unless no one is here and both the post office and UPS have made their deliveries. Then I can turn off the lights and snooze. But on weekends, I need to give myself permission to say, "I'm tired. I'm taking a nap" and to sleep however long my body tells me I need to.

I also need to give myself permission to admit that this is a struggle and that some days I will win and some days I will "lose". I need to stop seeing those days as losses and see them as adjustments in the road I have to travel. Not blogging has weighed heavily on my mind. I have hundreds of photos to share and have written thousands of posts in my mind as I drift off to sleep. I sometimes think that, perhaps, an iPad would be a good investment because I could write a blog post while I am in the recliner, with my feet up. But I don't want the cost of an additional item on my Internet service.

There has been a change in medications in response to this. I'll detail that in another blog post as this one is getting long. I don't know if the medication has made any sort of difference in my quality of life. Dr. Francis said it could take 2-3 months to see a change. She says this heavy fatigue will lift. You know, the recent end of November cold was rather energizing. I didn't mind it at all.

I also added back into my medications a nightly sleeping pill Dr. Francis prescribed. I thought I was tired enough that I could fall asleep without it, but that's not the kind of fatigue which promotes sound sleep. I found myself waking up two or three times at night. Fractured sleep is not good sleep. Since adding that back into my regimen, I notice that I'm not falling asleep during the day, nor do I need a nap when I come home after work. The brain fog one gets when one is overtired is lifting.

So, if you've stuck with this post this far, this is what's been going on in my life. I can't promise I will be better. I need to carve out time to actively post and my days and nights have been akin to mashed potatoes. Bear with me. Life is a journey and I seem to have hit a slightly bumpy stretch of road.

Beverage:  Dunkin' Donuts tea

Deb

Monday Morning

What a beautifully gorgeous Monday yesterday was. Clear blue skies and the perfect temperature to be out and about.

Well, that's not the office. I had to go to the lab and have more blood drawn. So many things have to be monitored when you have an auto-immune disease. I don't know what all the things are when I get the results back, but I have developed an understanding of what the values mean. It's a rare doctor visit that doesn't result in some sort of blood test. I have to ask Dr. Francis, "Are you sure I don't need blood work this time?" I'm just not used to not going to the lab.

Hence, my Monday started with a visit to the Outpatient Clinic at the hospital to have more blood drawn. The new RA medication we're going to try has specific requirements before you can take it. I've been approved but they needed to know I did not have TB, for starters. These kinds of drugs lower your body's ability to fight off infections. You can't start them if you have TB. My test came back negative.

The next thing I need to be monitored for is cholesterol. These drugs increase your cholesterol. I have to have a test before starting and then a month after starting to see how much they raise my levels. Low cholesterol runs in the family (Thank you genes.) so I'm not real worried about that side effect.

I am getting a flu shot this year for the first time in about 6-7 years. I don't go anywhere there are large groups of people with the potential to have someone be sick. And we are encouraged not to come into the office if we are sick. I tend to stay in my corner and not venture out if I hear someone with the sniffles. Even if I didn't have RA, I don't want your cold. A compromised immune system and the flu is a recipe for disaster and with my RA taking another step forward, I finally felt my introvertedness and tendency to be alone wasn't going to be wholly successful in fighting off anything. It's good that I don't mind needles.

Needing to find gratitude in all of this, I decided I was grateful for having an understanding employer. I was grateful that I could sit and read, when I walked up to the lab and found 15 people in the waiting area. Three more pages ticked off in my current book. I debated on whether to bring the book or the magazine. I decided that I don't have much left in the magazine and it could be a wait on a Monday morning so the book was a better choice. I didn't wait that long. I was surprised.

I am also grateful for walking into the lab room and seeing a technician I've had before. She looked at me and said, "You!" I looked at her and then looked away and said, "Who? No, it's not me." She laughed. "Can I have your name?" I said, "No" and then went silent. She burst out laughing while the student who had called me back, looked at us in bewilderment. I don't know this gal's name, yet. She turned to the student and said, "We know each other." I'm silently resigned to all these sticks so having someone to make it silly and fun is a blessing.

After giving blood, I went to my Dunkin Donuts to get breakfast. I have the clerks so trained that the only thing they ask me now is which other donut I want. I get a large hot tea and a double chocolate donut for sure, every time. Then I get some other donut. It costs $3.97 and I'm a member of the DD Perks club. I recharge my card every month and then sprinkle out the use over the course of the month. Dunkin' isn't the best breakfast, but I find that I feel better when I go there because they know me now and that starts the day off right.

This time, the clerk noticed my bandage and asked if I'd given blood. "I had to do the fasting blood test today so I haven't eaten since 10 p.m. last night. GIVE ME ALL THE DONUTS AND NO ONE GETS HURT!!" He just laughed. Armed with a hot tea and two donuts, I headed off to the office.

Now I wait. The tests came back positive for all values. Nothing was askew. I have been approved, as I said. I'm not sure if I will get a call from CVS that my meds are ready or if I get it in the mail. Dr. Francis wasn't clear on that. Once I start this, we'll see how I do. My hands have not hurt since last week, but, thanks to all the walking last week, it's my hip joints that hurt this week.

I'm not looking for a miracle here, although Dr. Francis said RA can go into remission. There was a recent study which claims to have found the trigger that switches on these kinds of diseases. They were looking for triggers for Multiple Sclerosis but finding the switch brings hope for breakthroughs in the treatment of all auto-immune diseases.

For the moment, I'll be content to head to the lab on a Monday morning and then hit up Dunkin' on the way to the office. It's not really that bad to have a hot tea and two donuts waiting for me.

Beverage:  Irish Breakfast Tea

Deb

Missing

You think you have it under control. Everything's moving along just fine. But, when you're dealing with a chronic disease, you're really at the mercy of your body.

I've been reminded by several friends that I have not posted anything in over a month. I have started a half dozen posts but something would come up, I'd get side tracked, and the post would languish, only to be deleted because I didn't like how it sounded.

I was busy at work at the end of July and the first part of August. It's only recently that things have slowed down. I've taken exactly 2 phone calls today. We kind of don't mind because things ratchet up here in a couple of weeks. Once I got caught up, I realized it was the first time since February that I didn't have a pile of things to my left. My daily work gets done and we have even been dismissed early because we were all sitting around surfing the web. Again, this is temporary, but it's a lull we'll take because we know what's coming.

I had a doctor's visit in mid-August. It was the required visit to see how my RA is doing. It's been a summer of aches. I realized, as I sat talking to Dr. Francis, that there probably hadn't been more than a couple of handfuls of days since I fell May 1st, where I wasn't in some kind of pain. Now, I use the word "pain" because that's the clinical definition. For me, it's been more of an ache here or there. My left wrist hurts. The next day, it's my right shoulder. The next day it's the middle finger of my right hand. (When fingers hurt, it's always THAT finger. "So, tell me where it hurts." Really? You really want me to tell you?) It's sometimes the same place two days in a row, but not usually. And it's not a stabbing pain. It's an ache. Most of the time, it's easy to ignore. Oh I know it's there, but it doesn't impact my ability to get my work done. It does, however, affect my quality of life.

I found, when reliving the summer of 2014, that I had slowed down. I no longer walk. I don't always have pain in my feet or hips, but I lack any sort of energy to put on the shoes when I come home and go for my 6 block walk. I sit which turns into a nap which means I can't fall asleep until 1 and then I'm wide awake between 2-3. Dr. Francis listened to all of this and asked, "Have I ordered a Vectra scan for you? Hmmmm, I have not. We need that."

You can see on the box that it's a test for disease activity. It's used to find out how much of an auto-immune disease is in a patient's blood. It rates markers on a 1-100 scale. The test takes a week. I was told I'd get a call, but I never did, which is fine. Dr. Francis got the results in less than a week.

My RA marker is 52. That puts me at the low end of "moderate". While I don't feel horrible, the daily ache and the fatigue are also marks of moving up, as it were, into the moderate category, from "mild" RA.

I won't lie and say I have dealt with this wonderfully. I was, and to a degree, still am, depressed by this finding. I tried to tell myself, when the blood was drawn, that it would be a low number and I was doing fine. But my heart was telling me something else. I was not surprised at the higher number, sad, but not surprised.

So, what is the next step? My vitamin D level was low, too, so I have added 5,000 unit pills daily. I could also spend 15 minutes every day that it's sunny, sitting in the sunshine to up my levels. I don't go home and sit on the deck after work. I usually have energy at that point so I use it to try to get things done before I feel drained.

Prednisone was added back in to help control the inflammation of and ease the aches in my joints. I had prednisone left over from March so I'm using that up. I had started with a whole pill and then moved to a half pill before going off. I'm back to a whole pill which is 2 halves.

The big thing is the introduction of what's called a "biologic" into my medications. Over a year ago, I was approved for a drug called Orencia, one of a new breed of biologics which were developed only for RA. You may have seen Humira advertised for RA. It can be but it was developed for Crohn's Disease and helping RA is a side benefit. I wasn't interested in that. I wanted an RA specific drug.

Orencia is also available only as an injected medication. Either I would have to give myself weekly shots or I'd need to go to the lab once a month and have them do it. Personally, the idea of giving myself a shot scares me so Dr. Francis is going to try to get me approved for Xeljanz, which is the only RA biologic available in pill form. It will be another week before I know the status of that request.

What isn't shown above is the sleeping pill I now take. The above batch is the Saturday pills. I take the same amount, minus the green pill, on Sunday. Then green and salmon color pills are removed for the rest of the week. I used to look at these and think, "It's not so bad. I just take the methotrexate. Everything else is a vitamin." But I'm also taking a small white pill, a diuretic, to help heal my leg from falling in May. RA slows the healing process. And the sleeping pill was added because I kept waking up at 2-3 a.m. and taking an hour to fall back asleep. It keeps me asleep all night. My hope is that I'm retraining my body to expect to sleep through the night instead of expecting to be awakened at 2-3 a.m. I don't remember why I was waking up at that hour in the first place which would have caused my body to think it was acceptable to be up.

While this helps, RA leaves many sufferers with chronic fatigue that no amount of sleep can dispel. I think that's what depresses me the most. I just can't seem to feel energized by sleep. I sit down to read and am asleep in 10 minutes. Heaven help me if I have to be on my feet working. I come home exhausted and can easily take a 2 hour nap. This influences what I do, when I do it, what I want to do, what I eat, everything. It magnifies the little things that don't need to be magnified. I can't sweep the house because I'm too tired so everything is dirty now. I can't get the kitchen cleaned because I'm too tired, so I see every little thing that needs to be cleaned. I want to sort stuff. I'm too tired to do it so the piles remain for weeks, for months. I make promises to myself I can't keep, which depresses me. I'm scared for the cost of yet another medication, something rather brand new. Will there be enough or will there not? What about Christmas this year? Carole's birthday? I don't feel like eating so I don't. I eat lunch out way more than I should, which compounds my feeling of financial insecurity. I'm too tired to cook anything that could have leftovers which I could take to work. So I get up late and think, "I'll just get Subway for lunch". I shouldn't be doing that, but, to my only credit, I do make very good food choices when I eat out at lunch. I buy food I like so that I will take lunch but assembling it in the morning can be an exercise in futility when I'm stiff and I got up late.

I'm not posting to ask for pity. Oh heavens, that's the last thing I want. I have no use for that emotion. I'm explaining where I'm at in my life right now. I'm trying to remember gratitude. I do get up easier now than I have in years. I'm not as stiff as I used to be. But the gradual fatigue, over the course of the day, wears me out. The minor daily ache of one body part wears me out. I tell myself to keep moving but the reality is that I don't. I'm not sure, right now, what makes me happy, other than the girls.

So, I apologize for not being here, for not posting. I tried, but it has felt as if the world has closed in this summer. We are approaching my favorite season and with Iowa football and hot cider and pumpkins and apples and crisp fall days can come a resurgence of energy. I will continue to keep on keeping on.

Beverage:  Water

Deb

Trauma

I've been missing the past week because I fell. If you don't like to look at bruises, this isn't going to be a post for you.

If you're a certain age, you remember the "I've fallen and I can't get up" line which advertised an electronic monitoring system for seniors. I have had elderly friends all my life and the one thing they mentioned when they reached a certain age was how falling was a death sentence. Your body just never recovered. I vowed that I would never live my life being afraid to tumble. How horrible it would be to be that afraid. Having fallen in 2011 and then again in January, although that was into a snow bank, I suddenly came to the realization that I had reached the "scared to fall" age. And then I fell.

I was working. It was an inspection. The reception area had two kinds of ceilings, drop and drywall. I went to the location where the drywall ceiling was because, if there were any defects, they would be in that area. What I didn't know and no one told me, was there was a step up of about 3 inches. Everyone in the office knew it. The carpet was a dark green and black fleck. I looked around but never saw the step and it wasn't illuminated well. My foot hit the step and I tipped right over, landing on my right knee.

My right knee and I have a somewhat stormy relationship. I hurt it in the 1970's while crawling across the living room floor. It swelled up and there was a thought that I tore something. Those where the days when knee surgery involved slicing the thing open, seeing what was wrong, maybe fixing it, and sewing it back up. If you ever walked normal again, you had an "L"-shaped scar across the knee itself. The days of arthroscopic knee surgery were a decade away. That kind of surgery was not used for teenage girls who may have simply twisted something while crawling across the floor.

Over the years, I have had my share of skinned knees, twisted knees, swollen knees and bruised knees. When I fell in 2011, it never really bruised. It swelled but didn't bruise. Instead, fluid collected behind the knee cap to the point that walking was an exercise in endurance. Once I had the knee drained, I felt like I'd been given a new lease on life. Then things started to ache again and I worried, at the beginning of 2012, that the fluid was returning. Was draining going to be my way of life from now on? Nope, it was merely rheumatoid arthritis.

January's fall didn't cause trauma. I tripped getting out of the Jeep and landed, face first, of course, in one of the piles of snow from all the shoveling I'd done. Other than my ego, nothing was damaged. But I did start to feel that falling was something to be scared of. You reach a certain age and there is no "bouncing back". Any sort of elasticity you used to experience is not a part of your body anymore. The collision with the ottoman leaves a quarter-size bruise on your shin or you can't remember where you got that quarter-sized shin bruise.

I couldn't, after I fell, stop what I was doing, go to my mom's because, of course this would happen when I was out of town, and put ice on it. I had to carry on. I did dash to her house once I was finished and she has the most amazing dog-eared ancient ice bag that we quickly used to cover my knee. I raised it up and continued reading the book (reviewed below) that I'd brought along. The next day, once I finished the rest of my inspections, I filled the car with gas and drove straight home. I had grand thoughts of seeing my brothers after work, but the only thing on my mind was getting home to ice, ice and my own bed, where I could prop up the knee and the foot.

By Sunday, the bruise had spread all across the knee and down the leg.

On Monday, the whole knee was purplish blue. And swollen. Holy cow. Think cantaloupe size. I tried to wrap it, but discovered that I couldn't get my pants on over the wrapped swollen knee. I tried to elevate it at work, but the way my desk sits in my office, I have to twist my torso to do my work. My gait has been radically changed and my hips will ache at the end of the day.

Honestly, I did not think I banged it up as badly as I have. I had a regularly scheduled RA appointment on Thursday and the swelling was easing in the knee. The bruising was subsiding. I have always been able to bend the knee, although only to 50%. I had gone down the basement stairs only once, to get the clean pants I knew were there, but I iced and elevated when I could. I tend to sometimes be too independent for my own good. I should have, just this once, used the valet parking considering where I had to park in the lot to get to Outpatient Services.

My rheumatologist was very worried. An x-ray was taken along with the regular blood work that I anticipated. The x-ray came back with nothing chipped or broken. She was worried a hematoma had built up behind the knee cap but there's no evidence of that. She felt something squishy and tried to drain it. I was expecting something like the first time my knees were drained. Oh lordy, not by a long shot. This was excruciating pain. She got blood not that mustard colored stuff I'd seen before. It's bruised and it's slowly, slowly healing.

The other thing that happened was a bruise at the spot where my blood was drawn.

Now, I have had blood drawn for years, decades even, to test for any number of things. I do not remember ever having a bruise at the drawing site. Maybe it's part of the trauma my body is going through. I don't know. The bruise is about an inch long by a quarter of an inch wide. I'm kind of embarrassed by it but putting a band-aid over it only draws attention to it. I, um, don't have any "flesh" colored band-aids. It's minions or nothing. I'm opting for the nothing.

My doctor called an orthopedist who said I need to get a knee immobilizer and wear it for a week. I looked at this thing and thought, "What the...?" This is well and good if you are living with someone who can drive you to work, do the laundry in the basement because you're out of pants for work or go to the grocery because you happen to be out of detergent to do that laundry. I've never been able to teach the cats to drive and neither one of them likes crowds to begin with. I'm also not interested in spending $50 on something I will wear once, even if insurance might cover it.

The more I thought about this, the more irritated I became and the more determined I was to find a solution that worked for me. I went to CVS and found a stretchy knit brace. I can't quite get it over my swollen leg yet, but it will be fine once the swelling drops a bit. I have at least 5 ace bandages, so I wrap the knee in the morning with a couple of them. Icy Hot cream was recommended and I've used that not on my knee but on my hips. It helps ease the ache from sitting or walking "funny". This has been the best purchase, however.

This is an adjustable gel wrap made by TheramaCare.

Once this one gets expended, I'm going to get another to keep in the freezer, assuming I don't still need it. It's lightweight and has 4 pockets containing freezable gel. It wraps easily around my knee, applying cold where I need it. The minute you mention you need an ice pack, people tell you to use frozen peas because they will conform to the body contours. Yes they will, but I love peas and think that's a waste of a vegetable. This is more expensive, than a bag of frozen vegetables, but it won't turn to mush after the 4th freezing.

So here I am, one week from the event. The swelling and bruising has traveled down the leg.
I was kind of surprised it would do that but I was informed that's normal. My right foot is swollen and tomorrow I'm taking my slippers to work because I don't have a pair of shoes that I can wear all day and be comfortable. I went to the grocery and CVS and did laundry yesterday. Then, I slept most of the afternoon. I find that I am more tired and I'm not sleeping as well as I could be. The knee hurts at night and wakes me up when I roll over. I am meticulous about where I go in the house. If I have to get up, I make sure I do a number of things while I'm up.

My doctor sort of scolded me. "You have to be careful," she said. I was rather hurt. There was a slight implication that I hadn't been careful. I looked at her and said, "I didn't want to fall. I was careful. You think this is fun?" She looked at me and I could tell she realized that she hadn't phrased her comment correctly. I'm not sure she needed to even say this in the first place. It's not that I will go around trying to trip and fall. She patted my arm and said, "I know. I know. You are careful." None of us who have reached this age and have endured a fall would go out of our way to throw ourselves against the ground, even for a physics experiment.

This is where I have been the past week, nursing a badly bruised knee and leg. I couldn't have a cat scan because every time Pilchard jumped up on the leg, the pain was too much. She was her diva self so when I'd try to get her to lie down, she wanted to stand. I've been so frustrated, too, because there are things I want to get done, things I need to get done, like cleaning litter boxes, but standing on the leg is painful. I'm told it will take 6 weeks to completely heal. Well, I'm not wearing shorts until July, that's for sure. And then I need to get into a walking regimen which will help me bounce back a bit better.

Still, I have reached the age where a fall is a life-altering event. I don't want to fall. It scares me, really scares me. It's going to take me a bit to get over this, mentally as well as physically.

Beverage:  Dr Pepper

Deb

Stiffness

At my last rheumatology appointment on January 31st, Dr. Francis mentioned that, of all her patients, only 2 had NOT complained about joint pain or stiffness this winter. She said it's been a very hard winter for those of us with arthritis or other joint problems. She said there's no literature about this theory she has but she thinks the cold shrinks the capillaries that deliver blood to the joint. Without this blood flow, it's worn muscle on bone and that causes inflammation which causes pain. I'm not sure how one would go about proving this either but it's as good of a theory as any other to explain how much I hurt.

And actually, in going through this assessment I do before every appointment, I wasn't quite as bad as I thought I was. I'm not really in a lot of pain. It's more stiffness. It is taking me about 5-10 minutes longer in the morning to get going than it did, even back in December. I try to build that into my morning, by getting up earlier, but I find myself still running behind simply because I'm slow. She put me back on Prednisone for the month of February and, if necessary, into the first 2 weeks of March, just to get through winter's last gasp here, help with the moving about and ease some of the aches that crop up from time to time.

But, in the last 10 days, that hasn't helped. The pain has been in the middle of my butt-cheek, radiating over to the hip and, particularly with my right leg, down the leg to the knee or, sometimes, the top of the calf. As the prednisone kicked in, the left side pain went away. The right side has lingered.

I realized it reminded me of the sciatica I had when I was pregnant. The medications you are given to alleviate sciatica cannot be given to pregnant women so I wound up spending a lot of time off my feet with my legs elevated. I find that now, it's a good way to ease the pain, too. But my friend, Becky, who is a doctor of physical therapy said elevation of the legs needs to be combined with movement. So, once an hour or 3 times a day, if I'm busy, I get up and walk around the office. It helps, but it just isn't making the pain go away.

This is so frustrating. I have a lot of things I want and need to get done. Floors need to be dusted, dishes washed, laundry done. But I can't be on my feet for long periods of time because it eventually hurts, very much, to move or stand or bend. I've moderated my abilities as I've learned what I can and can't do with this disease, but this pain is something else entirely.

Dr. Francis decided I needed to be on a Medpred pack. A what now? I've never heard of this.

I started yesterday with the top row. Each day, the pill count is reduced. It was kind of depressing to see my oatmeal bowl surrounded by all these pills since Saturday and Sunday are my days to take my weekly RA meds and there are a lot of those. But if it helps get through this, then it's necessary.

So, I'm on day two. I've been able to do a bit more than yesterday, but I'm still achy and sore. I'm going to do some reading this afternoon because I can elevate my legs which helps, plus, I've been up and down the stairs to do laundry and move things from upstairs downstairs.

What would also help is if we didn't get snow for a week. Although I take it slow and I bend my knees and not twist to toss the shovels full and I have a shovel that is designed to take some of the stress off shoveling, the sheer amount of snow we've had to shovel this year has contributed to my achiness. Hurry up spring. I'd rather be out raking the lawn than moving white stuff from one place to another.

Beverage:  Darjeeling tea

Deb

Are We Done Yet?

On purpose, I choose to live in an area where crystallized water droplets form in the lower atmosphere and decide they are going to have a party on the ground where I live.

For the most part, I enjoy winter. I like to be out in it, within reason. I like to walk in the December snows before Christmas. When Carole was younger, making snow forts was lots of fun and the occasional snowball fight as an adult is not to be missed.

But, I tell you what, when everyone on the block knows this guy by sight, because it so happens that he's assigned to our street, and he waves at us out there with our shovels, perhaps there has been too much frozen precipitation in the month of January.

The water content of January's snow has been very, very low so getting up to four inches off the front steps or the back deck does not need to involve the shovel.

Yet, as "easy" as this is, it's still rough on the body when you have to do it twice a week. As much as I tell myself that this is exercise, my body is screaming obscenities when I get done.

I had a rheumatologist appointment last Friday. Prior to seeing her, I have to fill out an assessment sheet. They use this to track how well a patient is doing. The ebb and flow of RA is reduced to a number. That number can then be used to decide if a stronger drug regimen is needed.

I hurt. I just do. I have kind of resigned myself to always having an ache or two. I will always, now and forever, be stiff getting out of bed. It will always, now and forever, take me 10 or more minutes to get going. But the achiness and pain of January seemed to be deeper than the usual achiness of RA. It was comforting to find out I was not alone.

My doctor said all but 2 of her patients had complained about joint stiffness and pain. The beauty of winter notwithstanding, the cold and all the shoveling has caused inflammation which makes us hurt. Although my assessment was a couple points higher than last visit, it doesn't mean I need to look at a stronger drug. It means that winter has been hard on people with joint problems. She said she can't prove it and there is no literature to document it, but she suspects the cold constricts blood flow to joints and that reduced blood flow causes joints to stiffen. She put me back on prednisone for the month of February, just to get through what looks to be another tough month of snow, followed by cold.

After leaving the office, I stopped by the grocery and then by CVS but the prescription hadn't been received. They would call Dr. Francis' office and have it ready on Saturday. But Friday into Saturday was to be a day of more snow, so I went nowhere on Saturday. Sunday dawned bright and clear. With a heavy sigh, I set about clearing the deck, front steps and up to and around the Jeep. The snow was light and fluffy so I decided I would simply clear the drive, all of it, including the driveway apron. When that, and the sidewalk and the deck and the front steps were all done, I hopped in the Jeep, drove to CVS and picked up the prednisone. 

The ache is now in my very lower back, down by my tailbone. The prednisone combined with an aspirin helps me sleep at night and part of the pain goes away. I'm still stiff in the morning, probably more than usual, but my legs don't hurt and they did when I went to see Dr. Francis. I was thinking it would be nice to have a week of no additional accumulations, to let my body heal, but that is not to be. This morning, in spite of the weather predictions that I would be on the 3 inch range, I trudged through this to get to the Jeep.

The knowledge that I need to shovel again to take the garbage and the recycling to the curb has me nearly in tears. I would happily send all of this to California. I know there is nothing I can do to change weather patterns, but that doesn't ease my sense of hopelessness and my body's almost instinctual reaction to start the aches now, before the shovel even touches the snow.

And it's only February 5th.

So, what to do? I get up at the office and walk around for 10 minutes. That helps. I have a couple days off upcoming. It's supposed to be partly cloudy and no snow. That will help, but before we get to that part, there is another major snowstorm coming which could dump 8+ inches on my location. We're approaching 60 inches, 5 feet, of snow this winter.

I tell myself that this is normal. We have become so used to dry, snowless winters, due to global warming, that we forget what it's like to have to move the frozen water from one section to another.

I'm more acutely aware of the effort to keep the walks and the drive clear. It's for me as much as it is for Tony, my Oberweis delivery guy, and the mailman. Yet, because I hurt, the addition of another foot of snow on top of what we have reduces me to tears. I had to start today with Dunkin because I couldn't think of another way to cheer myself up. This is one year I will be extremely happy to see spring arrive.

Beverage:  Dunkin' Donuts tea

Deb

"We are such stuff as dreams are made on and our little life is rounded with a sleep."

"To sleep, perchance to dream."

A good night's sleep to someone with RA can, sometimes, be an illusion. I have struggled, in the last 3 years, to find a good night's sleep. It didn't help that the mattress and box springs were old. Consumer Reports recommends you replace the mattress every 10 years. Well, um, yes. That's nice. There are so many kinds and brands out there that you can be overwhelmed trying to decide what to buy and the prices match that confusion.

I felt that a new mattress and box springs would help me handle my RA. Dr. Francis agreed, but warned that the usual 2-5 days of getting used to a new mattress will be longer for me. I just needed to remember that. So, I set up a mattress fund with the target of getting a new one Veteran's Day weekend. Why then? Because that's the weekend for mattress sales. There's probably some reason lost to the mists of time, but the best deals on mattresses is Veteran's Day.

The week before, I spent hours perusing every sale flyer I could find. I had no idea what brand I wanted. I had a budget and I wanted the box springs so the price had to include the set, sales tax and delivery. I eliminated anyone who would not set the thing up for me or haul the old set at least as far as the curb for free. It does me no good to have someone drop them off at the front door if I have to do the rest. I can't.

After a week of reading and rereading and searching through ads, I settled on Bedding Experts. First of all, everything that seemed to meet my needs was at or below my target price. Secondly, there is a store in Wheaton. Lastly, they haul away the old mattress and box springs. Although it would have cost me just one garbage sticker per piece, they recycle old mattresses and box springs so nothing goes to a landfill. That's worth it to me. Sunday, November 10th, I bought a new set and scheduled delivery for the 15th. I took the day off to make sure all the furniture was moved, the floors swept and the bedroom made ready.

The girls knew something was up.

When I change the sheets, I use lavender linen spray on the mattress and the sheets. Lavender promotes relaxation and a restful sleep. I rolled up the mattress pad I have had on this bed for at least 2 years and set it aside. I received it from a friend who was replacing it. Given it's age, I'm going to just toss it. The delivery people wouldn't take the pad.

That was the first sign that something was up. My moving out some of the things I have in the bedroom was another clue. No sheets on the old mattress was yet another clue. I swept the bedroom and living room floors. The final clue something was up was when I moved the love seat recliners away from the wall directly adjacent to the front door.

It's so funny when I move furniture. Cats gravitate immediately to the now open spot. "OOOH. Look at the floor!" But, it looks like any other part of the living room floor. When I do the monthly thorough sweeping, the one where I move their boxes and the rugs and the chairs and the other furniture to sweep around and under and behind, they have to check out the newly opened space.

At 1:15 p.m., the delivery men were here. I marveled at how one guy lifted the mattress onto a shoulder and carried it to my front door. The girls fled with the footfalls on the front steps and the unknown people in the house moving things around. It took about a half hour to bring in, move out and set everything up.

My new set. This is a Sealy Posturepedic.

The big question is how am I sleeping?

Dr. Francis was right. (She should be, but sometimes you think you know more than they do, but I digress.) I am slowly adjusting. This set is taller than the old set. That is wonderful. Instead of getting down into bed, I bend my knees and slide across.

Mornings are always, always, rough for RA sufferers. Doctors don't know why. We seem to have the most pain in the mornings. Because this is new, I'm feeling that pain. I needed to use a cane to stand up Saturday through Monday. Tuesday was just sore. This was in my lower back. Today, there was no pain in my lower back until I sat down for breakfast.

Friday night was rough. I don't think I got more than 2 hours straight at any given time. I tossed and turned. The tossing and turning has eased. Last night, once I fell asleep, I stayed asleep until morning. I still toss and turn to fall asleep as I have not adjusted to the bed yet, but it's better. I'm thinking by Thanksgiving, I will be used to this and will find a quality of sleep I have not enjoyed in years.

I spent a decent sum on this. However, this is for my health. Once I have adjusted, I will be very happy and I think it will improve my RA.

The girls have adjusted happily to the new bed. They didn't seem to have any problems falling asleep on it right away. Oh to be a cat and able to sleep pretty much anywhere.

Beverage:  Huckleberry tea

Deb

Halloween 2013

A little over a month ago, I had a rheumatologist appointment. She wanted to see me in a month and I realized that would be close to Halloween. So, I made my next appointment for Halloween and, in a fit of madness, said I'd come in costume. You might remember me posting about this.

I did some thinking and some Internet research. One of my favorite movies is Despicable Me. As I was thinking about what I could be, I sat down with a crochet scarf project and popped in the movie. It suddenly occurred to me. I could go as a minion.

How hard could this be? Having decided upon the idea, I set about to make it happen.

The minions wear overalls. I have no need of a pair of denim overalls, but, I did check to see what they might cost. $60 was the cheapest pair I could find in my size. No thank you. That alone is over the $40 limit I set for myself in making this costume. Then, I hit on the idea of making a bib and attaching it to a pair of jeans I already have. I could make the emblem the minions have on the top of their bibs and make a pair of goggles. I already had a pair of black gloves.

In early October, all the pieces were procured. A hunk of denim cost me $4.50. The black fabric for the emblem cost $3.50. I bought a pair of blue suspenders at Party City for $7.00. I found a long-sleeve yellow knit shirt for $8.00 in banana color. (If you don't know why that color is important, here's the link. The first 40 seconds is all you need to watch to get the gist of why 'banana' is important.) Everything else, I had. For $25, I had a costume that was trendy, thanks to the second version of the movie coming out in the summer.

The reaction today at the doctor's office was priceless. I honestly think they did not expect me to show up in costume and some of them had forgotten that I said I would. Everyone knew what I was trying to be. My boss didn't. I had to ask if my costume would "Grue" on him and then he said, "OH! Yeah! You're a minion!". The shirt I will keep and will wear again. It's very comfortable and, in the depths of winter, will be great to layer over a turtleneck.

Here is the finished result, taken at the doctor's office.

I forgot to bring my black gloves because it's in the mid 60's today and I didn't need them. As I rode up in the elevator to the 5th floor, I had to tuck my hair up into the hat. There were a couple of kids in the elevator with me and they got a kick out of me becoming a minion.

So, this was very successful. If you'd like to see how to recreate this, there are three posts below. I'm going to hang onto this. It has potential for another year.

Beverage:  Dr Pepper

Deb

You'll Be Needing a Hat - Halloween Costume 2013

To carry off this costume, you'll be needing a hat. Here's where I have a slight advantage. I root for the Iowa Hawkeyes, which means I probably have a hat that is the appropriate color of yellow. Second, I'm a pack rat. So, I set about looking through the winter hat bin. It's the same place where I have all my gloves, ear muffs, hats and scarves and yes indeed, I did have an appropriate yellow beret. But, I wear this hat and I don't want to have goggly eyes on the hat all through the year. How do I make goggles that won't damage the beret. I turned to the Internet for goggle ideas. 

The minion costume idea I found made goggles from styrofoam cups. As I didn't have any on hand and forgot to grab a couple from the event I attended the evening of the 17th, I figured I'd have to buy a package of them. Said package, even the smallest amount sold, would sit, under the sink or in the basement for years, yes, years, before being completely used. I checked under the sink just in case I had a couple I'd forgotten about but no, no styrofoam cups. I found a stack of a dozen of these, however.

They will work just fine.

I measured the length from the lip to the edge of the ring. Then, I put a slice into the middle of the cup and used a scissors to remove all but the top inch of the cup. I found you'll need to make slices in the side so it's easier to remove the cup body.

Once you've cut away all the cup except the top inch or so, you're left with a nifty ring that is just the right size.

The goggle instructions said to use a silver marker and color the styrofoam. Well, these kinds of cups don't take marker very well so I hit on the idea of covering the edge with aluminum foil. Using the measurement of the width of this ring, I took a piece of foil the length of the circumference of the cup.

I measured the width of the ring and added another inch to that measurement and cut two pieces, one for each goggle. I wrapped that length of foil around the rings, keeping the ring in the center of the foil. As I worked, I folded down the top half inch of foil over the edge of the ring and then did the same with the bottom edge. When you're done, you'll have two rings that look like this.

Now you need eyes. I took two paper plates and traced around the largest part of the rings and cut that out. I didn't have a compass at work so I was going to measure the inside iris and pupil, but, in looking about my desk, I found an aspirin bottle and an eraser were the right sizes so I traced around each. Then I colored in the iris with marker.

When this was done, I started to stick one eye into one of the goggles. You'll need to bend it around the edges just a bit to get it into the ring. It kept popping out until I had the thought to anchor the eye to a piece of tape strung across the back of the ring.

It still took a bit of force as a paper plate is rather stiff, but once a section of an eye was stuck to the tape, I added another piece across the first piece at a right angle. This was just enough tape to hold the eye in place.

You want to push the eye down onto the tape and then work around the edges, folding them up against the ring. When you're done, you'll have a couple of eyes that look like this.

Now, position the eyes on your hat.

On a beret like this, I could place the eyes pretty much any place I chose since the hat is almost a circle. Take a couple of safety pins, I used the largest I could find, and safety pin the goggles to the hat.

I made sure the pins went through the iris. They are almost invisible on the front.

One of the problems with the eyes is that on a hat like this, they won't stick together. In trying the hat on, I had one eye pointed one way and the other looking a different way, owing to the stretching of the knit.

I solved that problem with the omnipresent duct tape.

I cut a strip about a half inch long. That was folded in half and affixed to the exterior of the eyes, right were the bridge of the nose would be.

Another small piece was affixed to the front of the goggles right at the bridge of the nose, kind of like the running joke about fixing one's glasses with duct tape.

The small strip is almost invisible against the aluminum foil.

Now to make the goggle "strap". Here's where being a pack rat is extremely helpful. Given that I waited until the sort of last minute to finish this, and the car was in the shop last night, and it was pouring rain, and it was late, what could I use for a strap? I thought about the extra black velvet but that would require seaming and I didn't want to dig out the sewing maching because I'd put it away after making the bib the night before. As I was eating supper, it hit me. Viola.

I had an unopened package of wide bias tape in black. Even though Iowa's colors are black and yellow, I do not want to sew this tape onto the knit hat. The stretchy quality of the hat will tear any stitching I could do, even hand stitching. So, I utilized safety pins.

I put on the hat and wrapped the tape from goggle to goggle, adding an inch on either side. With that hunk of trim, I put one edge up against the goggle and wrapped the rest around the hat. The trim is safety pinned from the back adjacent to the eye and in the back middle. This allows the hat to stretch over my head without breaking any stitching or ruining the hat.

The ends of the trim are folded up onto the side of the each goggle and stapled to the side to they look like they are adjustable. (Finding the stapler was an adventure in and of itself. I'm thinking I don't need all the stuff in that bin.)

The end result is something close to a minion's head.

Plus, all the pieces come off the hat and can be saved for next year. The bias tape can be cut off the goggles and that piece used for something else. These instructions can be used whether you are making the goggles or the monacle.

I hope you've enjoyed these instructions. The look on faces of the staff, my doctor and the two kids in the elevator were priceless and it was an inexpensive costume to make. If there is something else you'd like to know to make the costume for yourself, just ask.

Beverage:  Dr Pepper

Deb