Eleven Years? Truly?

The wonder of the internet. Somehow, through the magic of Google, the blog that I kept for two and a half years more than 11 years ago is still here and accessible. Not only that, but easily I have found myself still connected to it. It’s true what they say: Nothing ever goes away on the internet.

While I haven’t read all of those earlier entries, I’ve read enough to remember why I started and why I stopped. So many health issues in our core family unit, with myself as the primary caregiver, initially I found a need for an outlet and so I started. It’s tough to share so much that you want to say to even your closest personal friends without them coming away with feelings you’d rather they not have. The beauty of a blog is the ability to connect with persons experiencing similar challenges or maybe just persons who can provide a needed cushion or viewpoint that you won’t - or can’t - get to on your own. 

Those early years of RSD (now CRPS) and fructose malabsorption were more than challenging, but this blog and the people who responded helped to sustain me. They gave me a place to share, anonymously in my case, some tough truths without impacting my family or my friends. Again - and I know I said it then, but it bears repeating - thank you for being there for me! Simple acts of kindness that made a very large difference in my life.

Now 11 years later, I will at some point need to change my tagline which says something about caring for the needs of my parent. My mom, who had Alzheimer’s, passed away in January 2016. I’ll write about it at some point, but just not today.

There have been other significant changes in our lives: My youngest daughter, the one with fructose malabsorption, is 24 years old, still living with us as she navigates college. She has her AA and is currently working on her BA. Her grades are outstanding, I’m so proud of her. Late in high school she presented with a seizure disorder, which is now kept at bay with meds, but as a result has put off becoming a driver, which works for me. 

My husband over these last eleven years has had multiple medical incidences (MRSA in a leg bone, heart attack, multiple surgeries on both legs, nearly losing one or the other), but having kicked the opioid meds introduced by his CRPS doc, he’s now using marijuana as his pain management tool, a fact about which I am very happy. He and I had made it into our sixties never having done drugs of this type at all (yep, we’re geeks), this choice has brought him back to us as a whole person and allowed him to manage his diabetes better, so much so that he’s now off insulin. Hallelujah!

All of our little dogs over time passed away (yes, there were four, who together totaled about 30 pounds, so like having one midsize dog in four little bodies, haha), and we have added a bigger dog to our family. Not intentionally - she was supposed to be a mini, but I guess that ship has sailed. She’s about 45 pounds, so much more dog (and hair!) in the house than the four little ones. She’s the love of my life currently, though she has some serious behavior challenges - anxiety, leash reactivity, resource guarding - and we’re working through those challenges slowly but surely.

We now have five grandchildren! At the end of my writings before, we were only at one. Amazing! Grandparenthood is the best!

And we’ve so far survived COVID-19. By that I mean as far as we know none of us has had it, but mostly I mean it’s been more than two years since we’ve had a family gathering that included all of us with the grandchildren. My husband’s conditions make him more compromised than most people, so we have been pretty diligent about not exposing ourselves unduly. We have had Zoom calls, Echo Show calls, I’ve stopped and seen them on my own, we worked through how to do remote Easter, Halloween costumes, Thanksgiving and Christmas, but I have really hope that this year (THIS YEAR!) we may have an actual Christmas gathering with the whole family.

This post is just a “catch-up” of what’s gone on for eleven years. Obviously that’s not everything, but the highlights. On to new and better things, I hope to find time to keep the blog fed in the future. And, who knows, maybe some of you who were here with me before are still out there. I’m going now in search of your blogs. I hope I find you! Happy 2022, people! I can’t wait to reconnect!

A Time Capsule

The house is in disarray, but is it possible to have "good" disarray? Ask me if I feel that way in a couple of days, when the mess is still here... :-)

Actually, my son, who moved back in a couple of months ago when he joined the unemployed - along with so many more - has tackled the bedroom he is supposed to be living in. Since it had become a storage room because I have no attic or basement space, there was a lot to be done! The room is looking better, but now there are significant piles of organized chaos throughout the rest of the house. Hopefully it doesn't take too long to get through them all, and hopefully, again, I can bring myself to let go of some of these things!

Why do we hang onto the past? What is it that makes us feel that it was a better time? Really, was it?

As my son and his girlfriend made their way through the room, they made it a goal to get rid of anything that they labeled "garbage," which to them many times meant paper products: newspaper, invoices, school papers, etc. They had spent more than a day filling plastic bags with this garbage when I came upon just a couple of examples where we might disagree:

1. In one pile of newspaper I located the group that had been saved of the coverage of my husband's dog attack.
2. Located only by the obvious goldenrod color, my copies of a school newsletter I had worked on for many years had made it into the garbage bag already.

Why do I keep these things? What makes me "need" them in the future? Certainly my son didn't know or understand the significance. Shouldn't my memories keep me; do I really need the papers to help me remember?

The single most obvious answer for me is: Yes. Watching my mom deal with her Alzheimer's for just the short three months she's been here now, I can tell you that in time I won't even think about these things anymore, let alone be able to remember the details. I keep them as a sort of a "time capsule" - something I can pull out later, wander through and remember what was going on during that period of my life in a very specific way: they are dated! Even with photos it's becoming more and more difficult to do this. I have whole collections of photos that have no date on them, and those are the ones that have made it to be printed. I won't even talk about the ones stored on my computer, that, while they are dated, run the risk of hard drive failure.

Along with the two examples I've already cited, you can also find in my capsule: A spiral bound book of hand-drawings from my third child's 2nd grade class, entitled "Five Little Monkeys Jumping on the Bed;" every report card I received in high school, and an assortment from other years; a copy of my SAT scores and my college transcript (two single pages, seriously!); notes from a Cub Scout planning session with info from each family (names!) on who would be responsible for what items at the upcoming camping trip; various assorted drawings and photos drawn or taken by my artsy kids; and two copies of my daughter's scoliosis x-rays, one early on and the other as her spine was beginning to resolve - much straighter!

Really, there's more. Obviously. My kids just roll their eyes at me, but I'm not ready to give up these things yet, if I ever will be. I am looking forward to the day when I pull out the - hopefully single - box that contains these precious items and can spend a couple of hours just perusing my past, remembering the teacher who went the extra mile and documented early drawings, the efforts that went into college, the 10 years as a Cub Scout leader (yes, I'll be remembering all three groups for whom I was den leader, as well as my three years with the Girl Scouts!), the wonderful fact that I gave birth to different kinds of people - some with artistic talent, and just how far we were able to come to better my daughter's life as she walks into adulthood much taller and straighter.

I can feel the warmth of it all already. The gratefulness of a life well-spent, the acknowledgement of the many years as a parent, and earlier as a young adult. For all of this I am thankful. And hopeful - in less than two months I will become a grandparent for the first time. Think of all the new things I can add to my box!

Overall, I would say it has been a good week. :0)

Diagnosis...

As a blogger, I really am terrible. Trying to get a handle on expressing myself, it's difficult to find the time in the day for this. However, it has been pointed out to me that to take proper care of oneself, you must do it every day. For example, walking is great exercise, but not if you do 20 miles one day and then don't do it any more for three months. Half an hour a day will do ya! But you really do have to make the time each day. So here I am again, planning a specific half-hour period to force myself to participate in thinking about my day.

I suppose most bloggers have a much better plan in mind, but I'm really here to maybe touch the lives of others or be touched back. Specifically, I started out thinking that I could just talk about everything, but really, I need to talk about two things: Alzheimer's (my mom) and RSD or CRPS (my husband).

My mom made the move back up to where we'd grown up, and where I still live, just a little over two months ago. I'd made the arrangements for her to live in an independent facility; a place that offers the ability to move to assisted and further for her care as we move forward. She is now fully installed, new doctors have been found, and we're beginning to settle into a routine. I see her two to four times a week, but mostly on Sundays when I take her to church, then to brunch, and after that we do something of her choosing. Life with mom right now isn't bad: she's bright and intelligent, though having trouble with her memory, but the biggest problem appears to be paranoia. It's not terrible, but I can see that it is the one thing that causes her the most grief - and those around her.

I've begun reading books on Alzheimer's and hope to better educated about what to expect as we move through this process. I had a close friend at work whose father lived for nearly ten years with his diagnosis, and towards the end it was very difficult for all concerned, but it helps me to have some perspective.

My husband was diagnosed with RSD (reflux sympathetic dystrophy, now more commonly known as CRPS-chronic regional pain syndrome) five years ago. Unfortunately, the diagnosis came late for us, as if it's caught early there's more help for the patient. Most likely his disease process came about as a result of one of the many surgeries which followed an initial injury more than ten years ago when he was attacked by two dogs, Rottweilers. He had actually recovered fairly well, though with significant pain and problems in one forearm, but was back to work and a contributing member of society. He began having more serious swelling in his lower left leg, one of the other serious dog attack sites, which progressed rather rapidly and later moved to the other leg. As anyone with CRPS knows, there are other symptoms, but it's not really my intention to educate people here about the disease, there are much better sites for that information!

So here we are today: my husband spends more than 23 hours a day in his bed to keep his legs elevated and help alleviate both the swelling and the pain. He's on significant medications, which have really changed him as a person. I don't think even he realizes how much. Though he has a reasonable disability package through his last job, he has become addicted to online purchasing. He's run through quite a number of items of choice but nothing which I'll be able to make much money off of in return.

Though I have tried not to go there, I am now taking over everything - though with much struggle. He doesn't feel like he's contributing and so doesn't want to give anything up: paying the bills, etc. Our relationship has deteriorated to the point that I don't even know whether we can save it, or if he really wants to. I don't plan to leave him, but I do have a young daughter for whom I'm responsible and I will do whatever I have to in order to make certain she has what she needs to thrive - and that includes a good atmosphere in the house.

Recently having hit a real wall in the relationship, we came to agreement on four specific items, one of which was me taking over responsibility for most things. Assuming he follows through, then I will stay, but I have nearly reached the point of no return. I have to be able to know that the bills are being paid and that we are at least solvent, or I will go and find a place where I can be solvent on my own.

That seems like enough for today! I've danced around these two topics for a while now, and now they're really out there. Maybe tonight I'll be able to sleep - something that's eluded me for a long time. From here on out I hope that I'll be able to just talk about our daily activities and how we're dealing with the two significant health issues in our lives - and looking for any insight as to good ways to deal with them!

Assisted living...

And so it begins...

Today is the day my mom returns to California, to spend her time relinquishing herself of as many personal items as she can bear to part with. It appears that over the course of the last two weeks, as we've visited assisted/independent living facilities here in our fair city, she has finally come to terms with moving back into our "rainy" environ.

You see, she hates the weather here. Absolutely loathes it, really. She is convinced she is a sufferer of SAD (Sun Affective Disorder?), the condition where she gets depressed unless she has a healthy dose of sun every day. Each and every place we visited, she asked whether she would be allowed to install lamps with vitamin D lights -- of course, we had no detractors.

But she has come to terms, at least it seems, that she must return to Tacoma. While one could argue the point, since three of her children, plus five grandchildren (and 2 spouses), live here, she really is just hoping to reconnect with her family in her later years.

She has spent the last 12 years in California, living near to her eldest child. However, with her husband's passing three years ago (is it really that long?) and her 81st birthday having arrived this year, plus the addition of an Alzheimer's patch to her medical regime, even she can't deny that being closer to the bulk of the family is the best choice.

I am saddened. It's difficult to believe that these are the times we find ourselves in. It's a bit overwhelming to know that in the next few years I will become pretty accustomed to the terminology that surrounds the physical/mental and care tactics for an Alzheimer's patient. I am looking forward, though, to being available for her medical visits. At this time, being long-distance supporters, we are at the mercy of HIPPA (spelling?), where most of the information we get comes from mom. It's impossible to argue with the medications she's being given, or the fact that over the last few years she's undergone more surgery and chemotherapy for breast cancer. One doesn't need to speak with the doctor to understand these things.

But that being said, I really want to talk to a doctor. Her doctor. Most of my information comes second and third-hand, from mom, from my sister, from the internet. I want to sit in the room when he/she explains to mom the possibilities for progression, what can we expect, what should we/she do for her. And I know that once this happens, I will be sorry that it's what I wanted. There will be no denying at that point. But doesn't having more and better information allow a person to be more proactive? At least with knowledge in hand, you must make a move. A move can be to "not move." But it's still a choice at that point, an informed choice.

Today's blog is about Alzheimer's, breast cancer, old age, assisted living. But today's blog is also a celebration of sorts. One that speaks of 81 years of real living, of making it to a point in a life where you can say you didn't leave too many stones unturned. My favorite card on the planet is the one that points out that the alternative to having a birthday is to not be here to have it. 81! 81 birthdays! And, no, we're not done yet.

Here's to many more happy ones...