PCA Shortage/Enotional Day

It's been a long time, but I really feel the need to post. Minnesota, and I, are in a PCA crisis. PCA stands for personal care attendant.

I am unable to do most of the activities of daily living, like grooming, dressing, cooking, bathing, toileting, Etc. I can only raise my hand about to eyebrow level ,  and I have difficulty grasping things at times with my hands. If it were not for the system of PCA's, I would be in a nursing home for the physical care. Cognitively, I am intact ( for the most part, LOL)

Since the middle of May I went from 7 staff members ( 24-hour care), (which meant I could sleep in my bed, instead of my chair, and have help whenever I needed it) to 3/4 of a staff person ( she was in a car accident, so she can't dress me excetera but she can help me with my household stuff). They left for financial reasons, family emergencies, and life changes. I have asked non PCA friends to come help change me excetera and they have been wonderful but they can only do so much

Without staff, I am forced to sleep in my chair, which has secondary negative effects: it causes my legs to swell, which can cause sores, and potential infections. I nearly lost my foot a few years ago because of it. I'm much better prepared now to deal with it so it doesn't get that far, but it's still a risk

For toileting, when I have staff I get on the toilet in the mornings, and in the evening. In-between I use incontinence products kind of like Depends. If I'm forced to sleep in my chair, chances are I won't get changed before hand, and I sit in a wet diaper for up to 24 hours if not longer. The word unpleasant doesn't cover it. Usually I'm in my home, I have food, water, and I'm safe, but I'm trapped inside until I can get changed . If you know me at all this is torture in the summertime. Not being able to go outside is a huge frustration. It's hard to plan anything because I might have to cancel because I'm not fit to go amongst people.

Today is that day, and it's really frustrating and hard. This too shall pass but boy it's tough.

I have no idea how to solve the problem, or what we're going to do in the next few years because it's going to get so much worse as more baby boomers get more frail. This has been the only time in my life when I wish I had a family of my own, but that doesn't always guarantee help either.

So I keep my head up, hug my puppy dog, work on projects in the house that I can, be grateful for every minute that I can have outside, and try to remember that this too shall pass.

If you've read this far, thanks for letting me vent.

My Christmas Wish List

I tell my girls (my staff) that one of the hardest things I had to learn was to ask for help. It can be humbling, embarrassing. (I choose those words over humiliating and shameful.) I tell them how letting people know there is a need to be filled allows others to become a blessing. If others don't know there's a need, how can it be filled? 

As most of you know I'm on a very low, fixed income. I have learned to carve a life within those boundaries, but there is very little wiggle room. When an unexpected expense comes up, such as an ongoing expensive medication that is not covered by insurance, or a staff member accidentally breaks a dryer in the laundry room and I'm financially responsible, or the van needs more than just an oil change, etc., I have to go without the more "frivolous " things. I never go hungry, but eating healthier can be more expensive, so I have to choose carefully, plan ahead, and/or gratefully make use of the food shelf. Eating out becomes a treat. Rent always comes first. I'm safe, and fed, and cared for--and very grateful. 

So, (taking a deep breath here) I put forth my Christmas wish list in hopes that a need/want can be fulfilled. Some will judge this inappropriate - I honor that and hope you will be kind. 

I have a number of friends on here that are in the same situation. They work hard but receive less than a living wage, while trying to raise kids. The “working poor”. Perhaps they will find the courage to make their wishes known as well. 

MY CHRISTMAS WISH LIST 

**Gas cards so I can pursue MN Master Naturalist volunteer opportunities elsewhere ($ for workshop fees as well), or visit out-of-town friends, or go see the Christmas lights, or go to the Cities to see ol’ college friends, or go visit out-of-town family, etc.

**Subscription to the local newspaper 

**Postage $ to send things to my grandnieces, etc. 

**The rechargeable batteries to go with the charger I was given 

**Subscription to Ancestry.com, and/or a DNA test so I can continue the quest to find my paternal grandmother's people. She came out of an orphanage. 

**Print cartridges for my printer 

**$ for the medications/medical supplies that are not covered 

**Archival framing of my mother’s childhood dress and provenance

  

**Digitize 16mm/8mm family home movies 

To all the angels who have been there for me over the years, THANK YOU SO MUCH! I hope you are blessed tenfold in return. You will be forever in my heart. 

Merry Christmas all!

A New Adventure Begins

As many of you know, I am out every single day, during the warm months, in my power wheelchair down by the local river, my beloved river, on the river trails. I have often wished I knew more about my surroundings than I do, and now is my chance. I have begun studying to become a Minnesota Master Naturalist. It's offered through the University of Minnesota Extension Office. This particular class is called "Big Woods, Big Rivers" and concentrates on the area of the state from approximately the Fargo/Moorhead area in the northwest corner of Minnesota and angeling through the middle of the state down to the southeast corner of Minnesota. The title of the textbook reads "Big Woods, Big Rivers--An Introduction To The Natural History of Minnesota's Deciduous Forests".

My first education into the environment in which we live was when I was in 10th Grade. My homeroom teacher was also my biology teacher and he started a class called "Ecology". Although I had grown up at our lake cabin deep in the woods, this was my first journey into the education of what I was seeing around me. That man's name was Roland Johnson, and he started something called "The Ecology Site" down by the Crow River (named after the Sioux leader Taoyateduta, also known as Little Crow) just across the street from the high school. This was in the early '70s.  Last summer (2017) the site was dedicated to Mr. Johnson, and rightfully so. I remember during that class we were each given a one inch patch of grass outside the building. We were to observe and make a record of every different thing we saw, from a blade of grass, to bugs, to mosses, to dirt quality, etcetera. All in a one square inch patch of earth.. From that one inch patch he taught us how everything is interconnected and that if you change one thing, you change everything. That tiny little patch of grass expanded wider and wider until we could see just how much we were affecting our planet Earth.

Now over 40 years later, I get to learn even more about this world around me. As a part of the program we are required to do 40 hours of volunteer work, spreading the word about environmentalism and conservation and trying to light new little fires in our young ones. I'm not sure what my project is going to be but I think I'm probably going to use this format to pass on what I've learned, perhaps using pictures and videos as well.

So, week one I have two chapters to read. The first chapter is an introduction to the Minnesota Master Naturalist Program.  The next chapter is entitled "Rocks, Ice, and Dirt--Geology of the Big Woods. Minnesota is located right on the edge of what has become known as the Big Woods, and the tall grass prairies.

I really am quite excited about this. I feel like I can use my brain again. I can begin to pass on what I've learned on my own, and when I've finished this class, I will try to teach the next generation of environmentalists and conservationists  just how important their surroundings are and that what they do affects everyone and everything around them. I hope to try to raise awareness of how important our environment is and that the biggest changes start at the smallest levels, in this case our babies.

Wedding And Babies

My first grandniece was born in 2016. My brother's first grandchild. She is such a joy.

I had a quilt sitting in a drawer that was unfinished because I ran out of sashing material. It was square and so I wasn't quite sure what to do with it all these years, until my grandniece's birth. My PCAs helped me back it, tie it, and bind it, and I gave it to her the first time I met her. When she arrived she was wearing a sweater that I crocheted for her, and it meant so very much to me.

This precious one lives about 8 hrs awaty, so I don't get to see her very much, but thanks to social media I get to see pictures and videos and talk to her online. She's growing so fast. I know she loves birds from what I hear, and she already speaks German as well as English (or is beginning to anyway :-))

The niece I mentioned in a previous blog, Elizabeth (my brother Mark's oldest daughter) has, in the last year or so, gotten engaged, moved twice, married, bought a house, started a new job, and had a baby. That's a lot of rites of passage in one year!

On April 16, 2017, Easter Sunday, Reagan Alma Neseth was born.

Alma is my middle name, was my maternal grandmother's name, and was also the name of one of Reagan's dad's grandmother's, or great-grandmothers (I can never remember), so obviously I'm thrilled with her name.

I drove down to see her the day after she was born, and got to hold her. She was all of one day old. (I'm crying right now just thinking about it.) I gave her one of her great grandma's pins, and showed her the unfinished quilt I was making for her (actually one of my PCAs did the sewing, I did the designing).

During all the festivities for Elizabeth's wedding, I came to know a dear lady named Nona. She was a big part of Elizabeth's life growing up, and one of Mark and Julie's (Elizabeth's parents) dearest friends. She'd been diagnosed with a neurological disorder and was in a wheelchair. Because of that, she had an aluminum ramp, which allowed me to go to Elizabeth's bridal shower and her baby shower. I otherwise would not have been able to attend. To say, being able to do that meant the world to me, is the biggest understatement I have ever made. I will forever be grateful to her for making that possible and for allowing me to become closer to my nieces and my brother's family. The neurological disorder has since taken Nona. But I know I for one, will always be grateful to her, and will never ever forget her.

I have plans to go down and have lunch with Elizabeth and Reagan next Monday and am so looking forward to it. Now I just need to find someone to sew the binding on Reagan's quilt before then.

UPDATE 12/8/2017: I thought I'd published this but I didn't. We did go to Mankato to have lunch with my niece and grandniece. She loved her quilt.

My Mother's Jewelry

My mother loved jewelry. Most of it was costume jewelry, but back in the day costume jewelry was beautiful. After she passed away I ended up with most of her jewelry. On days when I was lonesome for her, I would pull it out and look at it and remember her. It was bittersweet.

This summer during garage sale season, I happened upon three memory frames for a very reasonable price. I bought them immediately, knowing just exactly what I was going to do with them. Flash forward now to November.  I made the above for Christmas using mom's old jewelry. It turned out beautiful, much better than I even expected. There are some very unique pieces on this one, and I smile every time I look at it. There is a sewing machine key, very ornate old-fashioned key, the ballerina pins, earrings that she wore fairly often. There is a gold leaf with a pearl that is actually from Avon and has a small cream perfume dispenser inside that still has perfume in it -- it still smells like mama. There's some beautiful brooches and some stray earrings. I had to make the hard decision of taking the backs off of all of them. I kind of hoped to be able to keep them wearable in case somebody wanted to wear them one day, but it just didn't work. Anyway, I suspect those days are long gone.

I hope they become heirloom pieces for the family one day. Now I think about it, maybe I'll put a small informational sticker on the back for future generations.

     ====================

It amazes me how the little things can bring comfort, like looking at a piece of jewelry, or a Christmas ornament made long ago. Many will say they're just things, and they are, but they're precious things filled with the energy of loved ones. They bring good memories filled with love and light, and more importantly comfort. I do not believe when we die it is the end. I believe we are all light and energy, and that we choose to come into a physical existence. I believe when we die we are just released from our physical bonds. We still exist, just in a very different form. While we are in physical form we are here to learn what it is to love and to care, without guilt or negativity. We learn to forgive ourselves, and others. Forgiveness is a powerful force.

I believe that we choose our lives, before we are born, with a great deal of guidance and wisdom. Some of us choose harder lives than others, choosing to experience things that we do not understand, or did not understand, in previous life experiences, in order to choose more wisely – – to learn that we can do no wrong, that everything we experience (no matter how horrendous) has a reason and purpose, and to remember who we truly are, and in so doing, why we are here.

I don't understand it all, and sometimes it's very, very hard to experience, but I know in the end it is all for good. To those of you who are born-again Christians, I am as well. I know some of this flies in the face of what we have been taught, but I'm not so sure it does. One night I was laying in bed and I thought to myself, "Why are the people in my church not getting better?" The next thought that came into my mind was, "How big is your God?" My life has never been the same after that moment. God is beyond so much more than what we are taught, and that's saying something. So much more.

I hope this holiday season is a blessing for you all. When things get really tough, just ask yourself, "How big is my God?" You just might be surprised by the answer.

Spring Day on February 17, 2017

It was a beautiful day in the neighborhood today. Sunny and in the 60s, and yes it's February in Minnesota. (But climate change isn't real, she writes sarcastically. ;-))

UPDATE: I Have Experienced My Mortality Face to Face

I just discovered this draft from 2011. Not too dissimilar from what I just went through, Feb. 2017.


I have just returned home from a stay in the intensive care unit at Abbott-Northwestern Hospital in Minneapolis.  I experienced a number of infections that caused my heart rate to rise to as high as 155, a white blood cell count of 30,000 something and a blood pressure that was 50's over 70's.  I just returned Sunday (today is Wed.),and it's just hitting me how very sick I really was.  Much of my family was at my beside.  I heard today that my home health aide nurse was told I might not be coming home.  Bottom-line: I was dying. 

Medical Update and Popsicles

So much for blogging more once I got voice-recognition. But here I am now.

Last Wednesday evening, February 8, 2017, shortly after going to bed, I started to cramp terribly in my lower abdomen, followed by bowel incontinence, and the dry heaves. Initially I thought I had food poisoning, but after about six hours I finally called the ambulance.

I found out later that my first blood pressure was fiftysomething over 25. Not so good. Once they got me stabilized, they had to send me to a different hospital because ours was full. I chose St. Cloud hospital over Abbott Northwestern Hospital and I'm very glad that I did, for the most part. They were very thorough. They have a unit there called Medical Progressive Care Unit. The care is partway between a regular medical surgical floor and intensive care unit. They watched me closely and were very gentle with my overwhelmingly painful body.

The final diagnoses, after some varying conjectures, was an antibiotic resistant E. coli UTI that had gone septic (in other words the bacteria had gotten to my bloodstream). I was a pretty sick little girl.

That was one week ago tonight, February 15, 2017. I'm still pretty tired out, but I'm here and getting stronger every day.

NEED INNOVATIVE HELP

I'm putting this out to the cyberspace universe to see what happens.  

I am/was a quilter and love to sew but because of Rheumatoid Arthritis my shoulders have degenerated, which makes sewing at a sewing machine almost impossible. I have use of my forearms and hands for the most part, I just can't raise my arms up and forward in order to sew the way most do. If the machine were at lap level it would be more doable but I'm in a power wheelchair full-time and couldn't handle the weight directly on my lap.  

Here's what I'm asking: Is there a mechanical engineer, inventor, tinkerer, mechanical R&D, etcetera, out there that would be willing to work with me to develop something? 

Please pass the word: you never know whose reading. Thanks.

UPDATE ON MY TABLET EXPERIENCE AND LOTS OF RANDOM STUFF

It ended up that the first tablet I got was Windows 8.1 and was very difficult to use, so I traded it in for a Fire HD 6.? and it works much better: it's an Android. I also just discovered that it has a voice recognition program so I can type more easily just by speaking. Hopefully I'll do more blogging because it's been so difficult and slow to do until now.  As I speak, I'm sitting outside under the tree, with my dog, on a beautiful summer day, blogging . I could really get used to this, it's really fun . Now just to think of things to write about .

I planted a garden this summer. A local church offered free garden plots and they gave me two. I planted some Honey Bear squash, tomatoes, potatoes, onions, some lavender, herbs and some flowers. I'm already harvesting onions, a few potatoes, cutting flowers, playing hide and seek with baby bunnies, and looking forward to the squash and some more tomatoes .

The biggest challenge with the garden has been keeping up with the weeds. Either it's been too hot, or there's not been enough staff to help me. Now we're just pressing them down with "our" feet or when we do pull them out, we place the dead ones on top of the live ones. [Don't you just love the "we"? I can't do any of the physical labor, my staff does it all. LOL]  I also had numerous "volunteer" plants come up, including cucumber, pear tomatoes, cherry tomatoes, spaghetti squash, other tomatoes..

I haven't been on Facebook very much this summer because I've been outside so much. It's hard to keep up with all the posts. I usually check in at least a couple times a day. Sounds like everyone's having a wonderful summer. I'm so glad.

I sure miss Tia [my Yorkie] this summer. It was hard losing her after 14 years. She was the love of my life. Tia's godmother got a hold of me shortly after she died, and told me of a lady who wasn't feeling well and needed to find a home for her dog. So on June 6, 2015 I adopted 5 1/2 year-old, 9 pound Ava Jo. I'll try to attach a picture to the blog .

She is a sweetheart and very very smart but she is a very different puppy dog from what I'm used to . They are two very different little beings and I love them both . Ava seems to be settling in well and we're both getting used to each other. She loves to lay outside on the grass while I'm reading or playing with my tablet. I am grateful for her love, for her being here. I believe Tia let go so Ava could have a new home. I have so many conflicting feelings: sad that Tia is gone yet happy that she was here, happy that I have Ava, but missing Tia deeply. I definitely feel torn at times.

 I started going to the Courage Center again. I'm still having trouble with this wheelchair and it's been three years and still it's causing me problems . We may not be able to get a new chair yet but we're going to try and update the seating to see if that helps with the pain . I'll be going once a week for eight weeks. It's about an hour and a half drive.  (Update since first writing this : I only went to Courage Center for a few weeks. They're sending me to a clinic affiliated with Gillette Children's Hospital where they have the ability to adapt the equipment on sight.)

I now have almost full-time personal care attendant (PCA) hours, though I don't use them all. There's been a large turnover of staff the last couple of months because of health issues. A couple blew out their back,  one is going to be having surgery, another one's going on sabbatical for a while but she'll still be able to help fill-in, and one fell in love and moved up north (she has since moved back and has returned to my staff), so it's been trying but I'm very grateful for all the help I have and when I get discouraged I just remember I'm not in a nursing home, I'm in my own home with my dog, and  I can come and go as I please. The girls I have are great, I love them dearly, but it is hard work. As my mom used to say, I'm a high maintenance broad.

About a month ago, on a spur of the moment idea, my PCA Cheryl and I drove out to our old lake cabin at Lake Jennie. I had the wonderful surprise of seeing one of the gals I grew up with next door out there. She's was there from Virginia with her family . It was good to see her. It was also nice to see that their cabin was still in the family. We wandered around the old place

for a little while and then said our goodbyes. It'd been a long time since I'd been out there and it was nice to see it again. I did a lot of my growing-up out there in the summers . It was a bittersweet trip.

It's been a beautiful summer here in Minnesota. I especially love the balmy warm evenings. On the hotter days I've been sitting under a tree, with Ava Jo lying in the grass, reading books or playing with my tablet a little bit ( I'm close enough to my apartment that the Wi-Fi works if I'm in the front circle of the building, so I can use it outside. It's kind of nice)

My niece, Elizabeth K, my brother Mark and S-I-L Julie's oldest daughter, got engaged while she was on the road trip of a lifetime this summer. I'm very excited for her and her family. She is one half of the Buffalo Lake-Hector Junior High Social Studies department. Her fiancé is the other half of the department.

She's been there about two years now, I think she's starting her third year this year. Next June brings wedding bells.

As for my health, it seems to be slowly improving . I haven't been in the hospital, except for elective procedures, for at least 2 to 3 years. When I went down to the initial appointment at the Courage Center this time, I could do much more physically than the last time I was there (3 yrs ago). That was encouraging. I'm in the process of getting what are called AFOs (ankle/foot orthodics), which are braces to keep my feet from rolling. They cast you with the casting material and then they make the braces from there. They're made out of plastic with some foam padding. Hopefully my legs will be much more comfortable after I get them. (I now have them and so far so good.) The recurrence of infections seems to be getting better, not as close together.  I've had three separate skin cancers removed, two on my scalp and one on my cheek.

I hope you've had a rewarding summer/winter.  I have enjoyed it.

The future brings many exciting changes for my family and I for one can't wait!

I'VE ENTERED THE WORLD OF TABLETS - 1

I bought my first tablet yesterday [Friday, 3.13.15]. I actually started out to buy a GoPro camera. What I need is video capability to capture things like, how to adjust my headrest, how to put my braces on, etc. It will be used to train staff.  Along with "need", I also "want" to be able to take videos and stills of my precious, beautiful community.

So, how did I get from GoPro to a tablet?  I was looking for pictures of the buttons on the GoPro to see if my hands could handle them.  During the process, I read that if you have a newer phone or a tablet you could use them as a remote. [My phone is a dinosaur, so that option was out, but the price is right.] That discussion lead to a discussion on the attributes of tablets. My budget liked the on-sale tablet better than the price of the GoPro, I could use it in many other ways, and so now I own one. It's a little heavier than I would prefer but it'll do.  I would have loved an iPad so I could Facetime with my family, but I like to eat way too much.

The tablet is a TRIO with Windows 8.1. I thought it would shorten the learning curve a bit since I use Windows 7 now. We'll see. The touch screen is harder on the neck and shoulders than using a mouse. I bought a stylus and that helps.

I've spent the last few hours trying to figure out how to exit out of apps. My BRILLIANT PCA sent me to YouTube, my new best friend when it comes to learning Windows 8.1.

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Today [Sunday, 3.15.15] I took the tablet on a trial run to video my cruise on the river trail.  That lead me to learn about OneDrive, where you can upload to the "Cloud" and no matter what happens to your electronics, whether they break down or become outdated, you can still access your precious photos, videos, and documents. I have quite mixed feelings about putting it all "out there", but it is convenient.

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[Monday, 3.16.15]  I'm going to try to put the video on this blog, more to learn. We'll see how it goes.
  Hope the link works. Remember, I'm new to all of this, so be kind.  http://youtu.be/wVCHsWVWd84

KIDNEY STONE EXPERIENCE

The last time I had kidney stones it was on an emergency basis.  I was transferred to Abbott Northwestern Hospital in Minneapolis.  Because I was on Coumadin the surgery had to be delayed, so excruciating pain it was, for over 24 hours.  Long story short, I became septic (usually sepsis is a bacterial infection of the blood stream but this time it was fungal - not good) and I was rushed to the Heart Institute for a couple of days.  Two weeks and two surgeries later I was discharged, sans kidney stones.

Knowing that, now you have some understanding of why I was so anxious about this kidney stone experience.  This was an optional surgery instead of emergency, but necessary because the stone had started causing infections.

I arrived at noon, surgery being scheduled for 12:45. I arrived in the OR well after 2:00 pm. They had trouble getting an IV in because of being dehydrated due to the pre-surgery fast - nothing unusual, right? Ha! I wish. (More on that in a moment.)  Surgery went well and I was awake before I left the OR.  Recovery was uneventful except one of the failed IV sites was bleeding more than it really should be. We seemed to get it under control and I arrived at my room for a 23 hour observation period (usually it's a same day procedure, but I requested the overnight just to be safe and it turned out to be a wise choice.)  My dear classmate Denise and my beloved PCA Mary Kay were there waiting for me. (Having them there meant the world to me.)

Later that evening the old IV site began to bleed quite profusely - uncommon. For 2 1/2 hours I experienced bone crushing pressure while they: tried ice; tried to find a physician for advice; considered sending me to the ER since they couldn't find a doctor to come; finally they called the Rapid Response Team.  Just as they got a hold of a physician to come in to suture it (remember, we're 2 1/2 hours into this - sure glad it wasn't more serious than a torn vein [she types sarcastically]), it stopped on its own.  Sure glad I insisted on staying overnight.

I never seem to be able to do it by the book - maybe one of these days.  At least I was wise enough to know I should stay for a while.  I was not impressed with the lack of availability of physicians that night, especially since it was the med./surg. floor.  To be quite frank, all but one of the nurses I had, really didn't know what to do.  Finally the one holding the pressure on (and whose hand was quickly starting to cramp) called her supervisor with her free hand and her supervisor was the one who told them to call the RRT.  Well it worked, I think it scared the vein into clotting!

I still have to get the stent removed on Thursday but only have to go to Glencoe (nearby town) and then antibiotics for another week or so.

I made it through another one, thanks to all the love, support, prayers, healing energies, faith, and humor.  You all have been such blessing to me. THANK YOU SO MUCH. 

MUSINGS FROM THE RIVER TRAIL

I had a great many wildlife sightings on my cruise down by the river today.  My hometown of Hutchinson MN is blessed to have the Crow River running through it. Along it is a beautiful river trail system that once was the Luce Line Railway.  It includes a wildlife sanctuary, playgrounds, ball fields, horseshoe pits,  RV/camp grounds, boat landing, etc. I go down there almost every day during the warm seasons.

Today, on my way in to the sanctuary area I heard a large number of Crows, along with a Blue Jay, raising a very loud rucous in the trees across the river from me.  They usually don't do that unless there's a predator present.  I waited a while but whatever was bugging them wasn't budging so I moved on.

A few yards further on, a Crane was perched on a dead log stretched out over the river, along with a family of Mallards.  We sat/stood and looked at each other for a very peaceful period of time and I moved on. Again just a few yards further down I turned around to look back at the Crane again and smelled something very foul, the smell of death and decay. Sure enough there was a dead bird, but the stench was too strong to just be the bird; there was also a young, very small buck lying dead amongst the Milkweed Pods and yellow Lambs Quarters. I felt so sad and wondered what happened to him. My first thoughts were that I hoped no one had harmed him, then I wondered if  maybe he'd succumbed to the recent heatwave.  It's a mystery I'll ponder for awhile.

On the way back I heard an Eagle across the river near the same area where the Crows had been.  The sound stopped me in my tracks.  Sure enough, a fully mature Bald Eagle flys out of a tree that's in the backyard of that white art deco house across the way.  It was amazingly beautiful. I watched it soar for awhile until I realized I was late to get home.

I went back down later and this time it was 13 Turkey Buzzards, many dogs on a walk, and my shrink...hehehe...

Along with beautiful wildflowers and a baby turtle as well, it was an adventurous and memorable trip along the Crow River.  So that's what the Crows were so worked up about...hmmm...

Dear Momma

Started writing this a few weeks ago.  

Dear Momma,

You would not believe the weather this Spring.  Right now it's snowing really hard and it's incredibly windy. I'm sure glad you don't have to go out and smoke in this weather. You would hate this.

I got a wonderful surprise from Becky and Randy today; they moved to a new house (they're downsizing) and I now have your old jewelry box, the one the industrial arts guys from the high school made for you (at least I think that's where it came from!)  I also have some of your old jewelry now too. I was surprised at how much I missed seeing it so I'm thrilled to be able to enjoy it again. It makes me cry. I put your Christmas pins on my Christmas tree as ornaments.  Some pieces are on display as part of my decor, and some pieces I wear.  Grandma's shoe clips go on the Christmas tree as well.

I miss you terribly for some reason, especially when we used  to sit by Abby's yard BSing.  I miss looking up and seeing you looking out your apartment window.  I still go to get things that are no longer there, like the dutch oven, or a favorite pin...just little things that were there all my life and now they're not.

I get lonesome for you...so does Tia.

I got pretty sick after you left but I'm making my way back and doing much better. It's been rough but I come from tough stock...as you would say, I'm a tough broad.

I'm so sorry you had to spend your last days in a nursing home. I was able to keep you out for about 12 years but in the end I just couldn't do it anymore. Looking back I wish I'd put you in the hospice house instead. Live and learn right. I hope you can forgive me.

I love you and miss you so at times,
Jo Jo

JUST MISCELLANEOUS THOUGHTS

My brother Mark surprised me with a visit Saturday. He lives in a nearby town  (rural Dassel) and recently took an out of town job (Glencoe) so I see him even less than I did. His visit was a wonderful  surprise. I wish we could spend more time together, he seemed so tired and sad.

The re-staffing continues, I train in a new person two days this week. Training is always a challenge but even more so when I'm in pain. I'm not looking forward to it.

I need Spring so badly.  The outdoors is my therapy, my release.  Nature is my healing balm, it is my heart and soul, it is everything to me.  I desperately need to be outside. We're in a blizzard warning tonight - go figure.  Ah the sadistic irony!

This week the leg brace man is coming, the home health nurse for her weekly check, then the wheelchair man with my replacement Hoyer-type lift (the original one never worked right), ending the week with a trip to Courage Center for an occupational therapy appointment.  Plus training...whahooo...

It's a long story but I came into possession of my mother's jewelry again. (I'd been dreaming about one of her cobalt blue broaches for about a week and aching to see it again.)  It has been such a joy and I have many creative plans for it all. The broach already has a place of honor.

I've been aching to create: I would love to be able to pot, quilt, make small metallic sculptures, paper mache sculptures/art, book making, papermaking, scrapbooking, genealogy...with the pain in my arms and shoulders it's not possible right now.  Writing will have to be my outlet for now.

Have a good week everyone.

Prednisone Wean

It's hell, just plain hell. For 3-4 years I took 20 mgs of Prednisone a day. I'm down to 13mgs a day. My Rheumatologist would be happy to get me down to10 mgs a day but my goal is 5 mgs because that's the point where the fluid comes off [last time I peed off 17 pounds in one week]. Right now I'm experiencing exhaustion, chills, sweats, emotional upheavals, a nonexistent tolerance level, nausea, crappy appetite, increased pain, despondency, and on and on. Withdrawal. Suffice it to say, I'm miserable. One milligram a month - that's about 8 more months - yeah, we'll see. Just get me to Spring - just get me to Spring.

In the meantime I continue to interview new PCA staff and train them.  It takes approximately 5 staffers to have enough backup for illnesses, vacations or weekends /holidays. I'm a high maintenance broad! I'm so grateful for all of them, it's a tough job.

I need to get seen for a spot on my face, plus my teeth are rotting out thanks to the Prednisone and antibiotics, but I've been avoiding going to the clinic to avoid all the wintertime creeping crud - so far so good. My only exceptions are I go to the Courage Center and my wheelchair place. No groceries, shopping, etcetera.  Staff does that for me.

The pain is brutal today, it's as excruciating as the pain I experience when I'm septic.  It's like my nervous system is overly sensitive and everything hurts horribly - and this is with painkillers. I hope tomorrow is better.

A BIT OF MY STORY

     For those who may not know, my primary diagnosis is Rheumatoid Arthritis. The first symptoms began when I was 20 years old. I felt shooting nerve pain in my fingertips and toes. Then a knuckle swelled up. My oldest brother cracked his knuckles at the time and I thought it was cool so I did it too. I didn’t think much about the swelling in my knuckle until it didn’t go away. Then my left ankle swelled, followed by my left knee. Overwhelming fatigue came next. That was around 1980. By 1982, I was declared legally disabled. I had to leave my job as an Administrative Assistant for a large Lutheran church in the Twin Cities and move back to my home in Hutchinson. I was 23 years old. (Just a side note: I worked for a life insurance agency when I was 19 and one of the agents talked me into buying a disability policy. At age 23 I was using it.)

     Years later I had to give up my health insurance for a period of four years and that’s when my knees went. I didn’t know about something called “contractures” which basically means if you don’t keep the range of motion in your joints they freeze up, and that’s what happened to me: I can’t straighten my legs. (I wrote about that decision in a prior blog.) That’s why I’m in a wheelchair. I’m in a power wheelchair because my left shoulder is gone as well.

     I went the holistic health route for many years and did really well but eventually I couldn’t afford it. I miss the holistic modalities, and I have suffered greatly from the Western medical paradigm. I awoke July 28, 2004 and could not get up out of bed. I tried for hours, unsuccessfully, and eventually I urinated all over myself. I called my mom, weeping, and after she came and got Tia (my Yorkshire Terrier), I called the ambulance.  My life fundamentally changed forevermore. I went from no medications to way too many medications and have had great difficulty tolerating most of them. In the beginning of my Western medicine journey my primary care physician began an acupuncture practice and that was such a blessing because it was covered by insurance as well. But, yep, you guessed it, the practice voted to discontinue the program because it wasn’t financially feasible, regardless of how well it was working for the patients. We discovered after the fact that it was minimizing the side effects of the other medications, and it has been hell since.

     Currently I’m going twice a month to the Courage Center Rehabilitation Center for physical therapy. The summer before last I was in the hospital numerous times and nearly died a couple of times. Those experiences left me quite weakened and I’m still fighting to regain my strength. I learned more at my first appointment at the Courage Center than I had in the previous 30 years of physical therapy. I had developed Scoliosis but now it’s gone, they’re helping me with my wheelchair, and they’re the ones that got me writing again. We’ve only just begun! Whaahoo!

     I have many more stories I could tell, but enough for now. I just wanted everyone to be on the same page, so to speak. Don’t hesitate to ask me questions. 

FINALLY BLOGGING AGAIN

I haven’t blogged for a long time because I haven’t been able to type more than a few sentences at a time, but now I have a new way of typing. I now use an on-screen keyboard.  Using the mouse, all I do is scan the cursor over the first letter (or so) of the word I want to type and a selection of words appears at the top of the keyboard. I then scan the cursor over my word selection and it appears on the screen, automatically spacing after each word as well. No fingering, and the way I have it set up I don’t even have to click. It’s so much fun and so much easier! I’m a little slow at it right now but it won’t be long before I’ll be back up to speed--the learning curve with this program is very low.

I’ve been thinking a lot about what I want to do with my blog now. I didn’t go to college until I was 30, and my first class was Composition 101. The professor drilled into our heads repeatedly, “Write what you know”, so that’s my plan. What I know (among other things of course ;-0) is living with physical disability and all that entails. My biggest decision is how detailed, how graphic to get. Recently my oldest brother came to pick me up from the hospital. As the nurse began to go over my medication list, he exclaimed, “You take that many medications?”  The list was two pages long.  I felt very embarrassed. I hemmed and hawed something about many of them being vitamins, etcetera. I thought a lot about it on the drive home and realized how very little he knew about my life: my health, my beliefs, what brings me joy, what makes me sad, what truly matters to me – and he’s my healthcare representative.  It was a powerful wakeup call. So I’ll be writing about my life, in detail. It may not be pretty at times, but I promise to make it as interesting, enlightening, and hopefully humorous as I possibly can. Hopefully you’ll learn something. At times you’ll feel uncomfortable, so be forewarned.  The point is, if you are moved or challenged in any way--if I've helped ease your own journey in any way--then I’ve achieved what I desire. If in the process you learn more about me, well that’s cool too.   So, sit back, relax, and enjoy the ride.

Addendum: After giving it more thought, I know I’ll be writing about more than just disability; I’ll also write about the outdoors (because I love it so), animals (especially one certain 6 lb. Yorkshire Terrier), and whatever may come to mind. I may even write about spiritual stuff (and my spiritual path is quite esoteric, so it could get interesting).  We’ll see how brave I get!  Be sure to leave your comments, become a follower, or at the very least let me know you stopped by.  Also, please let me know if you have a blog so I can follow yours as well.  (This is so much fun!)

Where Have I Been You Ask?

I've been offline for awhile due to internet wireless issues but mostly because I was in hospital again: 11 days with the majority of them spent in the intensive care units of my hometown hospital and Abbott Northwestern Hospital in Minneapolis.  I've been home about two weeks.  I went septic and had difficulty with high heart beat rate coupled with very low blood pressure due to fighting atleast two infections and maybe three.

I'm beginning to realize I almost died...It's been difficult to integrate...it's been a frightening experience.  My family has been so supportive and I love them dearly.  I'm experiencing a great deal of fear...what's coming next...will I have the strength to fight it...?  I have the option of a new medicine but had I been on it this time I truly believe I'd be dead right now.  Instead I had decided to follow my gut and not take it and it seems to have been a wise choice.

My brother suggested I start using Caring Bridge but I think I'll keep using this blog for now.

So, happy belated birthday to all those I missed, prayers and good healing energy to those who need it/them, and many thumbs up to you all.

11/10/10

November 10, 2010.  We buried our momma today.  A warm day in November just as the rain was beginning, yet we were given a dry spell in between.  Nothing formal, we're waiting until Spring for that.  Simple, quiet...good.  She's back with her family, no longer the orphan she often spoke about.  She was born in 1924: by the early 1960's her entire family was gone and then she buried her husband at the age of 48.  Four funerals in 48 years.  I don't know how she did it.  I now understand the burden of the pain that she bore all those years.  She raised three kids through it all, and a significant portion of it alone because daddy's job kept him on the road except for weekends, vacations and holidays.  I understand so much more about her now: her pain; sadness; isolation...and during an era when there wasn't the support for (nor the understanding of) grief that there is now; how strong she really was inside...resilient...she had no choice.

After she died a blossom grew on a 12 year old Geranium she had which is now a part of my indoor garden: the biggest, fullest, most red blossom it has ever produced and it lasted until today - about two weeks - I cut it and took it with me to the cemetery.  A dear friend buried a gold guardian angel pin in the ground afterwards and her husband brought memorial candles for momma and daddy: they only stayed lit for a short time due to the rain.  Precious gifts: both they and what they brought.

It stayed warm this long - for that I am so grateful.  I sat up there and watched the clouds...momma loved to look out her window and watch the storms roll in.  It wasn't a traditional burial by any means, but it was peaceful and in some ways apropos.

My middle brother shared with me that when he was in his deer stand last weekend he saw a shooting star -  A very full, long lasting, bright red Geranium, and a shooting star.......rest in peace momma...