The Art of Chronic Illness

As I have sometimes mentioned, I have a chronic illness. It’s number three on the arthritis list, and sometimes I think it’s number one, but that’s just me. Most people think that there are just two version of arthritis—wrong!! When I started this little journey I was told there were 60 forms of arthritis, but if you count the subheadings in the lists, it’s probably more like 120. You know Venus Williams’s Sjogren’s disease? That’s a form of arthritis, although it doesn’t have the word in the title. Unfortunately, any form of arthritis is pretty much a chronic illness—you get it for life; there is no cure. Fortunately, for mine there are drugs that help mitigate the problems to some extent.

But what do you do with those problems? In my case, I’m lucky; I’m considered to have a mild-to-moderate case, and I really can’t imagine how bad it gets with the moderate-to-severe cases because I’m really not happy right now with where I am with this. Apparently I’ve been in a “flare” for almost two months now (based on what my rheumatologist said the other day), and counting. He can’t predict when it might end; all he can do is tweak the meds in order to try to make things slightly better. Hopefully, the weather will improve and the rain will stop soon. A couple of drier, warmer weeks will definitely help things improve and my attitude will turn up again. (Frankly, it's been so rainy here that not only are we out of the moderate drought people were predicting, but I haven't had to water the lawn yet, and that's really unusual for late June. But, that's also beside the point.)

The real issue is in deciding that you will live your life in spite of the disease, and not let it dictate what you will do. At least, that’s how I do things. 

So, what happens?

I refuse to give in to the problem. Therefore, no matter what, I get out of bed at just about the same time every weekday, sometimes more slowly than others, and I go about my business. What does that mean? I just touted up numbers and essentially, I just about doubled my business income this quarter over the last one. Now, having said that, I should admit that the first quarter of this year was not great. There just wasn’t enough work out there from my clients and I had trouble finding new ones. Fortunately, in mid-March I picked up a very steady assignment plus another new client, and had work from some of my steadier clients. It was a big help, and this next quarter is also looking decent. But the issue is that I never missed a deadline, and only had to cancel once—and not for arthritis, jbut for a stomach bug that made things difficult.

I have crocheted for years. I committed to making a dog-shaped afghan for my granddaughter. It was an easy pattern that went fairly quickly, but the winter and spring were not good for my kind of problem and I had to stop for a bit so my hands could recover. Oh, and I had then said I’d make a matching afghan for her very close friend. What I thought I’d deliver by late March was actually delivered at the end of May. Not sure when I’ll be picking up a crochet hook again, but it probably won’t be one of the really skinny ones unless I have a thick handle on it. But, they got done. Now, I’m working on an alphabet needlepoint for the anticipated second grandchild—I’ll need it done by Thanksgiving. Any idea how many little holes you have to fill with the thin floss and really thin needle? I work for a couple of hours at a time, and then come back a few days later and have at it. No matter what, it will be done, and framed, on time.

My family came to visit on the Memorial Day weekend, and I kept up with everything. Yes, I sat down sometimes when I got too tired but I’m hoping it wasn’t wildly noticeable. They know my hands are not in great shape so my issues in picking up my granddaughter were not considered all that big. After she left, I sat down for the afternoon—and cleaned up more the next day. Everything gets done, but on my schedule.

What’s the point?

If I were to let the arthritis have the last word, none of this would happen. I’d just sit here with an e-reader (much lighter than an actual book) and do next to nothing. Instead, it’s better for anyone with a chronic illness just to live. I still go walking as often as I can (usually the floors are flat there; if there’s even a quarter-inch lip on a sidewalk I’ll find it and fall over it so the mall is just better). The issue is to choose to do; not choose to sit. I know that not everyone can do that, but then again, I believe that even if my illness was in the severe category, I’d make the choice to do I have to believe that everyone can do something, even if lying down; it’s the only way we can have productive lives.

Even my rheumatologist is sometimes surprised that I keep going regardless. My impression after my last visit was that he wants me to slow down just a little bit in order to handle the flare. My greatest fear, though, is that if I give into problems any more than I already do, it will start to take over. I imagine that at some point in the future I will have to slow down to accommodate it, but right now, I just refuse to let it further impact my life.

I think that dealing with everyday life along with a chronic illness is an ongoing fight for everyone, but has to be done on our own terms—and those are different for every “victim.” With any luck, no one else will notice my fights.

And yes, it’s been a long time since I’ve posted here. The weather and the illness were part of that issue, as was the avalanche of work. Plus, can’t seem to find the lists of topics I have on index cards on my desk. I write them down as I think of them, then can’t remember what I wanted to do. That issue will be handled this week when I absolutely promise to clean out that desk. I’ve got a new work setup that I think will be better in the long run, and it’s time to clean out anyway. A good purge of “stuff” always makes me feel better.

Regularly Scheduled Dinner--Maybe      

I do Thanksgiving dinner. Actually, I’ve done it 35 times so I’ve been preparing it regularly since before my children were born. Supposedly, it’s “my” holiday. The only two I missed were when my great-aunt invited my family to join hers (and to bring my in-laws), and last year, when it came out 6 weeks after my granddaughter was born—she was deemed a little young to travel.

But back to my dinner. It’s a blend of traditional turkey/stuffing/cranberry sauce (the usual) with traditional Jewish foods. Potato latkes are a staple and I’ve also been known to serve derma—a stuffing of meat and some form of grain that’s part of a sausage—although that has kind of stopped since we don’t seem to have a decent kosher delicatessen in the area. In the last few years, my older daughter has become the fastest potato peeler anywhere, which makes the latkes a lot easier to do, and my younger daughter consults on the desserts. Everyone offers suggestions for sides. And I improved the turkey when I heard Bobby Flay recommend adding chicken stock to the bottom of the pan. I do that twice—at beginning of cooking and in the last hour—and my husband is singing its praises. Who knew it could be that easy?

The strength in Pyrex

This past Thanksgiving, I had another mission. My granddaughter was past 13 months old and I decided it was time for her to walk. Total success. She arrived here crawling 80% of the time—we reversed that and she left walking 80% of the time. Now she’s almost up to running. Plus, there’s a step down from the kitchen to the family room. She figured that out on her own—although after managing to go down head first and hitting herself. She’s a quick study. She also moves around with a twinkle in her eye that says, “I know you don’t want me to do this but I’m going to try anyway; going to stop me?” Usually, unless it’s dangerous, we don’t because even falling down is a learning experience. The best one came when she realized she could open two cabinet doors at once—walking gave her a new level of reach—and bang them together. She loved it. But, when she managed to pull most of a set of Pyrex bowls out and let them fall onto the floor, even she scared herself. However, it seems that Pyrex when dropped 6 inches is pretty indestructible. Fortunately, it didn’t fall on her very small foot. Once she realized she was fine and there were no terrible repercussions, it was back to door banging. She loved that. Unfortunately, she had to leave, so we’re back to Facetime every weekend, and sometimes during the week. Now that walking was so successful, when we go out in February I'm going to work on getting her talking more. It's time.

Small explosion

On Thanksgiving night, though, after the food was eaten, and leftovers put away, and while the baby was playing with everyone – did I mention that she knew within 15 minutes who her great-aunt was in the room, and who her great-grandmother was? If you asked her, she knew who to look at, which we thought was, was usual, brilliant—I dropped a small grenade into the room. Not even the hubby knew it was coming. It was my last Thanksgiving. It’s not an easy meal to plan, or put together –making the latkes alone, which is done same day, usually takes at least an hour and a half. Plus, I think it needs new blood. I’m happy to buy the food for whatever menu others want, but I’m not getting up so early again to cook it. And my arthritis is really not happy with me that weekend. After 35 dinners, it’s time for me to hang up my potholders and let someone else take it on. I’d even be happy to cater it, if I know what people want; or to go to a restaurant and let them serve it. We won’t discuss the whole set up and clean up issue. I’ll know the verdict on what we do in August, because plans still have to be made. Otherwise, it’s going to be a really small dinner for hubby and I. I'll be able to watch the entire parade.

The Art of Listening

I was just catching up on my blog reading—others, not mine— which made me stop and think. Do I appreciate the right thing when my child does it?

I stayed home and raised my children for 16 years. I was lucky to be able to do it. And I enjoyed being there when they got home from school, and helping them with homework—especially the projects they had to do that went beyond writing a paper or a book report. It was a wonderful time in my life. And I think I could better appreciate what they were doing because I didn’t work. Before anyone gets upset, that doesn’t mean that people who work don’t appreciate the things their children do. It’s only that, for me, when my mind wasn’t divided between work at home and work at an office (and my first office when I went back to work was very chaotic; I can get witnesses to attest to that), I concentrated better on what they were saying.

Looking back, I feel badly about that because I probably missed things. My older daughter probably needed to just talk things out more (she’s always been extremely verbal) and wasn’t asking for an opinion, just for someone to listen. And I probably offered too many opinions. I’m grateful that she still does ask for my input—and sometimes she even listens to me. I’ve been working on better hearing what she is saying these days, rather than hearing what I want to hear in the conversation.

And my younger daughter probably could have done more extracurricular activities in high school. I had just read so much on overscheduling kids that I wasn’t as aware of what she could, and wanted to, handle. Now she’s grown, and living on her own, and she probably is starting to schedule more into her life. Odd how that works. First I almost forced her not to overschedule, now I push her to get out more. But I’m also happy that she does seem to reach out to us more lately—usually while walking her dog in the evening—and does ask for our opinions. It seems to have come full circle.

New Generation to Hear 

Now I have a granddaughter and I’m thinking that as a grandmother, I really need to work on the happy medium between the two styles. We live 1700 miles from our children; it just worked out that way and since we’re still working it makes more sense for us to stay on the East Coast and not base our lives in Denver. But I still want to be able to understand how that child will think; and what his or her opinions come from. That’s where FaceTime comes in, by the way. We get to talk to her every weekend. Yes, my daughter and son-in-law are doing most of the conversing, but my granddaughter has been known to focus on our faces, appear to be into us, and when there’s a lull in the conversation, she offers a few words. One day, we’ll even understand what she’s saying—and then the real listening can begin.

Now I have a granddaughter and I’m thinking that as a grandmother, I really need to work on the happy medium between the two styles. We live 1700 miles from our children; it just worked out that way and since we’re still working it makes more sense for us to stay on the East Coast and not base our lives in Denver. But I still want to be able to understand how that child will think; and what his or her opinions come from. That’s where FaceTime comes in, by the way. We get to talk to her every weekend. Yes, my daughter and son-in-law are doing most of the conversing, but my granddaughter has been known to focus on our faces, appear to be into us, and when there’s a lull in the conversation, she offers a few words. One day, we’ll even understand what she’s saying—and then the real listening can begin.

The only thing I can think of to say for that: Praise the inventors for Skype and FaceTime.

Reason for Parenting

Reason for Parenting

I’m on a plane back to New Jersey. I was out of town for better than 2 weeks visiting the newest member of the family—my granddaughter, Sela. She is our first grandchild, born to our firstborn daughter. There’s something very poetic about that. And while I’m all right to be heading home, I already miss her. No, she cannot walk or talk, and probably has no idea of who I am, yet to me she is gorgeous, smart, and one of the greatest additions to our lives.

A friend of mine told me that there is an old Welsh proverb, one that I can paraphrase here but also totally agree with: there is no love so pure as that for a grandchild. To that concept I’ll raise a toast (in my case a diet soda or glass of water) and say, “Hear, Hear!” I don’t think there is anything more true Yes, I love my children, but having Sela can only expand our hearts—and theirs.

I have spent a lot of the past 2+ weeks helping my daughter out, and reassuring her that she will be a great mother (which she will) even though she’s getting very little sleep these days. I have ignored the cranky – Sela isn’t cranky, she just can’t talk yet so has to scream to make her feelings known – and been able to hold a grandchild who wants to hold her head up, even though it comes crashing down, usually on her nose, very quickly. Who thinks that standing up is a great idea—although we all know that once she pushes up there is only one way for her to go. She has a lot of patience, although when she’s in her crib and manages to roll to her side you can also see she is startled, trying to figure out where to go from there. Her hand went by her face and she was fixated on it. Helped her stop crying, although she had no idea where it came from—or where it went when she put her hand down.

I’m entranced by a baby’s ability to be totally focused on you for one second, and be totally conked out and sleeping the next. And as she’s sleeping, and making faces, you wonder what she’s dreaming. Most of the time I think they’re good dreams, but there are those grimaces I wonder about—nightmares already? Her life is good. There are regular feeding times, and diaper changes. She already knows the touch of both her parents and instantly calms down if they hold her. So, why the grimaces? Not enough adulation? We’re all in awe of her.

And the Flip Side

 And as I finish this I have to also wonder about the end of life. Less than a week after Sela was born, I lost a friend I held in high regard. No, we weren’t in touch often, but when we did speak we could just pick up where we left off as if no time had passed. Unfortunately, it seems no one I knew had even heard he was sick—and it seems he had been for a long time. But I have to admire him; knowing he was sick he continued to work and travel as much as he could. That’s how he chose to live his life; I can only hope that Sela does as well—and for longer.

A Grandchild Is Coming!
A Grandchild Is Coming!

Finally, it’s coming. We’re going to be grandparents in just a few weeks. My mother will be a great-grandmother. My sister will become a great-aunt, which I suspect she’s more into than she was when she first got nieces. All of our friends are anticipating this event. For us, we’re almost the first in our circles to hit this milestone.

Speaking of my mother, she’s ecstatic. I think she thought it might never happen – her late best friend was up to five of them, but now there is no way to, as they say, “kvell” about it there. But every day I am asked, “What’s the word from Denver? How big is the baby now? I’m telling everyone I know.” I’m with her; I want to talk about it too—to everyone.

Have you seen how many tests the mother-to-be now has to go through? In my day, there was a little blood work, and if there was any concern, maybe an ultrasound. Even amniocentesis didn’t happen too often, and it was usually done only in select hospitals. Now they have whole panels of tests for very specific areas. Ultrasounds are commonplace, with pictures sent home with you. The only one that really bothers me is the digital one, which can show the face of the baby. And there are also prebirth tests to make sure the delivery can’t transfer germs to the baby. Who knew about this stuff years ago? And yet the kids usually arrived just fine.

How do I feel about this? I think I’m ready for the next generation to arrive. I like the idea of another member of the family, although this time I don’t have to be the primary caregiver and will be there for play dates. I’m with the group that believes grandparents are there to provide support—especially mentally and emotionally—but also to play with the kids, wear them out, and then return them to the parents and let them calm the kids down. I’m not sure I’ll overwhelm a kid with sweets though. This time around, it’s just payback.

I haven’t had the heart to tell my daughter and son-in-law that while they’ll always be special people, the grandchild has moved to the top of that ladder.  And what can be more special than that?  It’s the main rule of grandparenthood. Now I make sure to check out baby clothes in every relevant store I pass. Don’t know what we’re getting yet but I’ll be prepared.

Time to get to the big event.