Showing posts with label Family. Show all posts
Showing posts with label Family. Show all posts

Thursday, February 25, 2016

Rest And Be Thankful... An Update

Photo by David Ralph Johnson
"Rest and be thankful."   ~William Wadsworth

I have so much to be thankful for these days. Even in the midst of all that is going on with me health-wise, there is never a moment that I am not thankful for all that I have. On two separate occasions now, my neurologist as taken the time to ask me how I am doing mentally. It's an odd moment when a doctor gets quiet and asks you if you ever think about harming yourself, if you are ready to "give up". A moment packed full of emotion - alarm, embarrassment, defensiveness, worry, confusion.. But even with all of that going on, there is a clear and very focused "me" that says, "No, it's simply not an option." I'm thankful for that. I'm thankful that even in my darkest moments I long for life. I long for my family and my friends. I long to live my days, my moments with the man that I love with all of my heart. These things keep me moving forward. These are the things I take rest in.

I've not yet taken the time to really let people know what has been going on with me the past few months. I've eluded to it in my blog, on facebook and in messages to friends, but I've not really been too public about the nitty gritty. Not so much because I don't want people to know. More because we (myself and my medical team) really have not known. And until things become clear, I would rather not worry people. But, as is usual with these situations, it seems to be dragging on so I thought this would be a good time to give a bit of an update.

Last September, after tapering for months, I finally made it "off" prednisone. The first time since becoming ill in 2009. It was a horrible tapering with an even worse outcome. But I was determined to see what happened. I was determined to see if my body could figure things out on it's own. I wanted to know if I could "recover". Quite often when going off a medication, there is a period where things get worse before they get better. I wanted to know if this would be the case with steroids. Well, for me, it was not. I ended up creating an inflammation process, a kind of domino effect, where all of my tendons and muscles were affected. Wherever there was a tendon...I had tendonitis. I could barely walk. Then it crept into my muscle tissue, causing some rather serious conditions, mainly in my left shoulder. Of which I have had various treatments that have been unsuccessful.

Then it began to affect me neurologically. My doctors immediately put me on higher doses of chemo and steroids. For those of you who understand the medication regimen, my cocktail consists of Cellcept, Methotrexate, Hydroxycholorquine, Prednisone and a host of other medications for symptomatic treatment. A total of 37 pills a day and weekly injections.

These symptoms are quite frightening. I began having weakness and numbness in both arms and legs. It then moved into my torso and my face. This was also accompanied by extreme nerve pain all over, but especially in my legs. Nerve pain that would immediately wake me up out of a deep sleep or prevent me from sleeping altogether. Some days better than others. Some days difficult to even stand upright. This, combined with all the tendon and muscle pain, the fatigue, the headaches, the GI problems - well, it became overwhelming. That's what led to the hospitalization in January. It is also what kicked off all the extensive testing, of which I am still doing.

The number one suspect - MS. It's not the first time they have suspected this. Over the years I have been tested and the results have been inconclusive. I have had one "bad" spinal tap and two "good", although they have not been completely clean. I have five lesions on my brain that have remained unchanged over the years. My neurological exams have declined and the nerve conduction tests have slightly decreased, with some new issues. But nothing that conclusively says that MS is the culprit.

So this is where I am at right now. My team of doctors are working together to decided who should take the lead at this point. If there is no new diagnosis to be added, then my neurologist does not want to be the one deciding which medication I should be on. They all agree that something needs to change. The problem with that is that any "new" medication is going to be quite risky for me. It's a step up (or down, depending on how you look at it) on the scale of possible negative side effects and complications. They're just more dangerous to my already compromised immune system.

I'm still in a holding pattern. Things got a bit delayed the past two weeks when my rheumatologist got ill and was out for two weeks. My team has been good to communicate with me every few days, for that I am extremely thankful. It makes a huge difference to know I'm not lost on the radar. There have also been a number of other things that have kept me going during this time.


And...then there is YOU. My family and friends. Those near and those far who have continually checked up on me. Those of you who have "liked" my posts on facebook, commented on my artwork, BOUGHT my artwork, sent me messages and cards, stopped by for visits and basically supported me every step of the way. For me, oftentimes captive to these four walls, this outpouring of kindness has literally been what brings me through each day.

I am so thankful for you. I hope you know that. I hope you know how important you are to me and how much I cherish your friendship and care of me. I was completely bewildered (and overjoyed) by your response to my need for a new bed. Within less than a month, my dream became a reality because of you. And let me tell you, I could write another thousand words about how helpful this new bed is. Immediately I noticed a change. Immediately I was able to get more hours of restful sleep. Immediately I noticed a difference in my waking hours because of that sleep. All because of the compassion of family and friends. You purchased my artwork and in turn, you gave me rest. What a beautiful thing. Truly, truly beautiful and I thank you with all of my heart.

This has been a tough one, that's for sure. And where I go from here is a somewhat worrisome for me. But this I know - I can do anything with my family and friends beside me. To really know that you are there.

This I take rest in.




Friday, November 8, 2013

Seven Months

Seven months. That's how long it has been since I last posted on this blog. As I sit here and type, I wonder where I went. I wonder where you have been. I wonder if you wonder. Life is so funny. No, actually, Life is Life. We are the funny ones. Life just is. It is, in this second, like it was 5000 years ago in a second back then. The sun rising and setting and all that happens in between. We stick things in there like "time" and "good" and "bad". We organize and label that which either works in our favor or doesn't. And then we tell ourselves the appropriate story for the situation at hand. This was good, this was bad, this made me happy, this made me sad, this should have happened, this should not have happened... and so it goes. Winding ourselves up and calming ourselves down. It's so easy to get carried away in our idea of Life. I have had more than one doctor tell me I spend too much time up in my head. It just happens so fast. Electrons firing off in our brains like busy little ants preparing for... I don't know, everything!'s just Life. So natural and so easy. It sits there looking at us like a kind Grandmother, smiling. Patiently waiting for us to figure it out, all the while, smiling. We cover the earth with a sort of frosting, trying to make it just so. But it already is just so. Just perfectly so.

Seven months. Where to even begin. I've got seven months worth of things to write about in my head, but I feel like I need to catch up. Put a few things out there and let you know how I am. I think that if I was following someone with a fairly significant health problem and they disappeared for seven months, I would want to know a little bit about what's been going on. The nuts and bolts. So here it is, seven months of nuts and bolts for you to make of it what you wish.

There was love and there was lots of it. 

There were also difficult days. Last winter was a tough one on me in regards to being or feeling home bound. We had months and months of snow.

In fact, this one came in April and we had another one in May. 

I did manage to get some painting done. This one arrived out of a space of great pain and ended up in a space of great love. This was also the last painting I did. With Spring on the horizon, I didn't want to be cooped up in the basement. I longed for the outdoors. 

Dave and Maddie spent the winter caning the seats for their canoe. April saw the finished product.

I learned to not store popcorn in the oven, even if it does keep it from getting soggy. One has to actually remember it's there before doing something like....oh, say, preheating the oven. 

May saw the last of the BAC dates. (Big Ass Canoe) Here Maddie and Casey are helping Dave and Grandpa put on the gunnels. It takes many strong, quick hands to accomplish this task!

Gunnels complete! Ready to finish her up for the scheduled Father's Day Launch.

Ta-dah! Father's Day weekend the long awaited canoe saw it's first voyage. The canoe was seven years in the making. This was a glorious day.

Dave and Maddie, father and daughter, sharing one of life's best moments. 

June brought lovely, lovely weather. By the end of the summer these baskets touched the deck floor. I spent as many moments as I could out here, listening to the birds, smelling the fresh air, watching the clouds float by. Being still. 

July brought a new bike. For the first time in four years I felt well enough to venture out into nature on my own. I'm not sure if it was the fact that I began a much more rigid diet or if it was just a wonderful gift, but July and August were the best two months I have had since becoming sick in 2009. We went on a mission to find the most ergonomically correct bike for me and after one miserable attempt (and return) we found this one at a bike shop just blocks from our home. 
It's like riding the wind. 

And off I went, almost every day, in a different direction, for two months. 
Some trips only minutes long, and some hours.
It was glorious.

The wonderful thing about where we live is that depending on where you go, there is always a wide variety of landscapes to see. Just turning down a road can lead from farmland to woods or from woods to rivers or from rivers to lakes. And every road is paved. There were days when I ventured out that I never saw a single car except for when I was close to home.
The quiet is nothing short of holy.

These are my feet, outside, near water...and not in bed at home. They were very, very happy feet indeed!

Less than a mile down the road from our home lives the Apple River. I would stop on this bridge and just listen. Alone, hearing her voice, knowing the words being spoken had never been heard and will never be heard again. Listening, letting go, listening, letting go, listening... As her voice slipped though my fingers and landed in my heart. 
Listen....let go. 

In July the crops looked healthy and strong. It seemed as if the season would be perfect. But summer would have a different idea. The rain stopped and the drought moved in. It was difficult watching the luscious green leaves turn gold before their time. Harvest would come early, if you were lucky, but for most, not at all. 

These guys live right down the road from me. I'm pretty sure they think I'm crazy. 

This is the road that leads past the cows. One of my favorite as there are very few hills to speak of. It also leads to miles and miles of nature preserve wetlands. 

One of the many ponds/lakes along the way.

The land beyond this sign is covered in grasses and wildflowers native to this area. It also surrounds a beautiful lake that is almost impossible to get to. I would park my bike behind this sign, go stand out on a hill and just wait. All kinds of wild life would surround me. Mice, gofers, deer, eagles, hawks and more birds than I could even begin to name. All busy moving about. Like life does.
It was this day, just moments after I took this picture that Dave called me to say that we needed to leave right away for Florida. His sister Linda was nearing the end of her battle with cancer.
I'm glad I was here when he called. I didn't rush off. There were things that I needed to hear. Holy things. Peace-filled things. 
I will never forget this moment.  

These guys played a little game with me. As long as I was moving, they were moving. If I stopped, they stopped. It was actually quite hilarious. It felt like an odd combination of Red Light Green Light and Duck, Duck Goose!

Horses are big around here. I would have loved to spend more time visiting with them like I did with the cows, but where there are horses, there are horse flies! Not something I am even well enough to peddle FAST enough to outrun. They are NASTY. Period. 

I so wanted to open this gate and walk in. Maybe next year. 

Another wonderful tidbit about this area, unless you are where there are horses (and horse flies) there really are no bugs to speak of. Not sure why, but it is so nice to find a spot like this and just sit on the grass and soak it all up, un-devoured by the common mosquito. 

In August we took this picture. We (Sara, me, Dave, Emma) were going somewhere, I can't remember where. That's not the significant part. The significant part is that I felt really good here, and we were going somewhere

One place we could not seem to get to was our trailer. So we brought her home and made the decision to let her go. I think what we realized most was that having seven daughters and being chronically ill does not bode well with being a weekend warrior. As much as we long to "get away", what we truly long for is to be with our family. SO... she now resides in a morton building somewhere in Wisconsin and a lovely couple from DeMoines, IA will pull her somewhere in the Spring. 
And so life moves on...

And these kids are here to prove it! This summer found all sorts of fun with these couples. From left to right - Aaron and Anna, Tucker and Emma, Drake and Sara. Three sisters, three really wonderful young men. Endless fun and laughter. I just can't get enough of them. 

This just makes me happy. 

August also saw the wedding of two of my dearest, most treasured friends, Jeana and Susan. It was a monumental event in many regards, but most of all
it was an event of the heart. This was a long awaited
day and it is one that will be etched in my
memory for all of eternity. 

I'm glad I listened to the river. And the wind. And the mice. And the birds. Because September brought a change of seasons for me as well, and I had to let go.  I tried, for most of September, to weather the storm on my own. But this one was relentless. Most of September and most of October looked just like this, and I am still struggling. There were some occasions where I managed to get out (thanks to major pain medication), but for the most part, this was my space. 

One of those occasions was to watch my oldest daughter Aleela run in the Twin Cities Medtronic Ten mile. This race is part of the TC Marathon weekend and very difficult to get in. She and I used to run marathons together, but since I have been sick, she has promised me to not stress her body to that extent any more. This is me, in the brown coat, waiting for her to run past. 
I tried numerous times to cheer the runners, but the emotion was so stuck in my throat that every time I opened my mouth I started to cry. 
I stood silent and waited for her 
to come. 

And here she is. In all of her fullness and beauty. She is a wonder and a miracle to me. Her journey on this earth has not been easy, yet she has walked it with the grace of a women much wiser than myself. 
Every time I am with her I learn something new about life. 
I am in complete awe of the women
she is becoming. 

October brought Amanda and Daniel home from California to celebrate their engagement! They don't get to come home often, and many times it's only Amanda. This time it was both and it was for almost an entire week! 
Other than the celebration dinner, most of our time together was spent in the kitchen over a cup of coffee. One morning we started talking and the next thing we knew, the day was almost over. Minutes fly by like seconds with Amanda. I always tell her that I wish I could have had her as a friend in my youth. 
But even better yet
she is my friend now. And that's as good as it gets!

My five daughters at the engagement party. This maybe happens once a year!

And here we are! Me and Mr. Johnson!
The love of my life.

The Three Amigos. 
The Three Musketeers.
The Three Mousketeers.
The Three Stooges. 
The Three Little Pigs. 
These three absolutely CRACK ME UP. They spend a lot of time at the house simply bringing joy to everyone around. I cannot imagine a day without these three in it. 

Aleela, Adella and Keith. 
Wow,  no one could have ever prepared me for being a Grandmother. 
Just when you think your heart can't get any bigger, 
grandchildren come. It's a love like none other and I just can't
get enough of it!

And then there is engagement number two! I guess I should be prepared for things such as this. I imagine that with seven daughters events might begin to overlap and pile up a bit. But what a wonderful and welcome surprise this was! 
Aaron and Anna. 

So the days are getting darker here again. Lions are laying down with lambs and the chaos begins to still. We had our first real snowfall yesterday and there seems to be some sort of quiet announcement in the air. No use not listening. 

As I type this I am rushing the last letters in order that I should hop in the shower and get ready for yet another doctor appointment. This one with my neurologist, the good Dr. Walk. He's been with me from from the very beginning, one of the best.

Doctor's appointments have a way of creating a bit of anxiety in me. There is a certain amount of "emotional investment" that never seems to do any good. Remembering to keep my expectations in check is key. I told Dave the other day that there is always this small part of me that thinks things will be better. Like really better. Like "this is the answer" better. But most times its just finding out that nothing has gotten any worse and coming up with a temporary solution to the issue at hand. I walk out of the PWB building where Dave is always waiting for me. I climb in the car, he asks me how it went, and I cry my tears. By the time we hit Highway 280 he has worked his magic, gently held my hand and brought a smile to my face like only he can do. 
No need to frost this life of mine.
It couldn't possibly be
any sweeter. 

Just perfectly so.