Welcome to my coffee shop in the cyber neighborhood!

Yes, I’ve been gone a while…a long while. I’ve had some other physical and subsequent mental issues. I don’t really want to talk about them. It enhances the stress and potential depression. I read an article that explains the MIA from blogging probably better than I could.

Isolation: When Our Disease Makes Us Withdraw

So whether it’s starting over or
just continuing like I was never gone…

Welcome to my coffee shop in Cyber Space
Try the pumpkin spice scones!

Contact Nani at

Sunday, January 31, 2016

Projects and Goals For 2016

I go back and read the Project and Goals post for the year ending before I write the current one to get some perspective and a clear look behind so I can look ahead with a clean view. It kinda makes me sad that 2014 ended with “don’t let the fireworks burn your butt on the way out.” Hmmm…

It seems that the end of 2014, especially December, was the beginning of 2015. I seem to have an issue with the number 15 in my life. The only other year that I really just wanted to erase from my book of me when it was over was 1981, the year I turned 15. 1982 was a great turn around from 81, so I’m pretty optimistic about 2016.  I think I’m done with 15s until 2081 now, when, of course, I’ll turn 115.

2015 was rough. I mean, it started with TWO books I just wasn’t getting into. Now, I really didn’t like the ebook and I was having a hard time reading the hard cover physically. I may try that one again this year after a few other things change around. Alternatively, I may see if I can find it in an ebook. I got it in a book swap, so it came highly recommended.

Before 2015 was over, I ended up canceling a few trips because of mobility problems, gave up a ticket to a concert and I had a car stolen by a supposed friend. And believe it or not, the thief who stole the car came in SECOND for the “Worst Person In The World” award in my 2015. The worst person in 2015 was that sales person I wrote about a while back who has such a “hard job” that it was too much of a pain to tell me she wasn’t bothering with doing that hard job to get my wheelchair. That wasn’t just stealing a car, that was stealing a chunk of my life, as the current chair has messed up my hips and causes actual pain when I’m in it for a while. I guess the fact that there were TWO despicable people in my world last year is what floors me. 

Everyone has bad days and I try not to judge people on a single bad experience but I do run into those who are just not nice people or have questionable morals. Ancient knowledge, Aristotle said “We are what we repeatedly do.” Therefore, repeated dishonesty is just a dishonest person. I dealt with two people who had seemed to be decent people, but turned out to be ugly people. They were toxic and I’m glad to have them out of my life. I pursued repossession of the stolen car to the extent I could afford for a vehicle that was taken out of state and I did the most a person could with the wheelchair rep; I took my business to another vendor and I make no bones about telling the healthcare professionals who make the referrals to their patients to avoid Rehab Medical because of their bad customer care.

I can usually find a bright side or at least appreciate a lesson in a circumstance to lessen the blow. The car thief still owed over a thousand on the car that she left the state with and decided to stop making payments on. I still have the lien and original title, but as one who currently can't work at all, since I can’t spend a full shift in the chair without pain, the monthly payment was important. I do have the option of tapping heavier into my savings, but I shouldn’t have to. I will never recoup the payments on the stolen car, but I won’t extend beyond what is my legal right;   I don’t think it would make me feel any better to be as ugly as she is. I’ve always believed that you don’t lend money, or sell a car on a payment plan, to a friend unless you can afford to lose the money or the friend. In this case I lost both, but the money ended up being worth more, which is rarely the truth. I won’t stop trusting my friends. I’ll just be more careful about what level of trust I give to whom.

The increasing chronic pain from the chair has me cursing that rep from Rehab Medical every day and she is more loathsome to me than the car thief. I have done the strongest thing I can think of in that instance, taking my business to another vendor, but that meant the paperwork needed to start over again so what was started in May was officially back to square one in November. So far I’m pleased with the new vendor and the communication.  Of course, while I was in the nursing home for 2 weeks all progress on the new chair stopped. The reason there is the bureaucracy of our Second World excuse for healthcare in the United States, but that is a long-existing soap box in my world.

So that was the worst of 2015. The two worst people and the source of most of the bad things in my 2015. Counting down the last of 2015 on December 31, at the stroke of midnight I said out loud, ‘Thank God it’s over!” But ya know what? I survived 2015 to build 2016 into a better year.

As I move on to this year, there were many goals that were not met last year and many projects undone. I am officially erasing them all with the same HUGE eraser I’m getting rid of the whole year with. I’m not erasing the lessons, just the bad things that made it necessary to learn them. So here are my projects and goals typed on a clean screen for 2016. 

Wellness Projects & Goals

First and foremost this year is a new wheelchair! This circus has been going on for 8 months now, actually just 2 with the new vendor, but the current chair has messed up my hip flexors and they won't start to repair without proper support. When I'm in the chair I have now, there is pain and my legs also swell.the new chair as ordered fixes the hip problem, better supports my hips, back and legs, reclines and lifts legs and lifts to enable me to reach out to a grab bar or counter and strand. It also has seat padding that will help avoid pressure pain.  This has the potential to open as many doors as the current chair closed last year.

I have a hospital bed that Lynn, my occupational there therapist is working with me on  transfers and utilizing the triangular trapeze bar for strengthening excersize.

Weight Watchers changed their plan system to one that is more fitness oriented. I understand changing the program every couple of years is common with them. When there wasn't anything interfering, the old points program, using the grams of fat, carbohydrates, fiber and protein, worked well for me. There were activity points, but using them wasn't so emphasized. The new points system requires entering more label information than I have time or hand dexterity for and why change something that worked for me? I bought an app that works on exactly the same system as the old Weight Watchers plan. Saves me $20 a month. My goal is simply to be sure that I record my food very day, even if that means 3 Snickers bars and a half a pint of Cherry Garcia. Own it; all of it.

Paperwork is being completed to get help to afford and aide for at least a few hours every day. The plan there is continued pursuit and implementation.

Cleaning and Organizing 

A couple of people from Molly Maid came in and boxed up the clutter in the room the hospital bed is in now. I've asked for an estimate to clean that room, the kitchen and the accessible bathroom biweekly. I really do hope that's affordable.


It's my plan to seek a part- time telecommuting opportunity once I have the new chair is here and I can think productively. I already have the the doctor letters necessary to request vocational rehab assistance.


For scrapbooking, I'm going to continue with my page-a-day goal.


I'm sticking with the 2 books a month goal.

Both scrapbooking and Reading goals begin on February 1

As ever, my goals are:
This, or something better.

Saturday, January 30, 2016

I Am Home!

2016 started with the last of 2015 loose ends. David went on a one-week respite trip that ended up turning into a 3-week break from caregiver duties. I went to extremes to give him that!

The MS Society helped me with a grant to pay for part of an aide to come in twice a day while David was in Arizona. Promedica private pay home aides was my vendor of choice and their aides were great. I was especially fond of Ashlea, the aide I had every “tuck-in shift” and a couple of mornings. She was awesome and I’d love to keep her, except that having recently passed the test for her nursing license, she’s on to a bigger and better career that just taking care of lil’ old me. (And she will be awesome and I wish her the BEST!)

Now as the week neared the middle, things started to go downhill for me. I was feeling weak. I fell Wednesday morning getting out of the recliner and into the wheelchair, even with an aide there! The nice EMTs put me back in the recliner and the aide packed my swollen ankle in ice while she cleaned up in the kitchen. When she came back and moved the ice, the swelling in my ankle was gone, but I still had a sore knee. She got lunch, juice and filled my water cup before she left me, the TV remote and my iPad in the recliner.

When Ashlea came in that night she was perturbed that she wasn’t notified that I’d fallen that morning when the aide was there. We tried to get me up and transferred into the wheelchair so I could get dinner, but my right knee was in lots of pain. We agreed that it was better to stay in the recliner for the night and she chopped up some cheese and vegetables for me. Ashlea was scheduled to be my aide the next morning and she called to get a second aide in to help with the shower transferring.

Thursday morning I got into the power chair but I couldn't even get to the toilet in the bathroom with two aides. 911 was called and this time I asked them to take me to the hospital because I gotten so weak and so tired. I really figured they keep me and I was okay with that, even looking forward to it. I spent the entire day in the emergency room in unit 15… OMG 15! (make sure you read "Projects and goals 2016” to understand the terrifying irony of being in room 15 in emergency!) They did a urine test and discovered that I had a UTI, X-rayed both ankles my right knee and my chest; nothing was broken everything was working the way it was supposed to, they gave me an IV antibiotic for the UTI and I waited for a doctor from the neurology department to visit, thinking my weakness might be an MS exacerbation. The neurology doctor told me she really didn't know why she was there except that I have MS. after all of the test, The IV antibiotic, and the check up from the doctor from neurology, it was concluded but they didn't need to keep me and I'd be discharged. What?? The social worker at the hospital had to arrange for an ambulette to take me home.

Overnight I had nasty problems with bladder spasms and a dislodged catheter that have me on the phone with the 24 hour nurse line. Jessica, my regular case nurse, was here first thing in the morning to get me cleaned up and change the catheter. She was incredibly concerned with my weakness and the UTI still looked bad. By the end of the day in communication with supervisors at Promedica and my insurance company they had things set up for Ashlea to come in an hour early and help me pack a bag for an ambulette to take me to Heartland of Perrysburg where I stayed for two weeks.

During those two weeks I had antibiotics for a very bad UTI and a yeast infection. That is a nasty double whammy that no one should have simultaneously. I also got physical therapy and occupational therapy. Between that and the extra antibiotics I was pretty well exhausted every day. But it did help. I’m still weaker than I was on January 1, but stronger than I was on January 6! And the nurses and therapists I see at home have all commented about how good my legs, ankles in feet look. The swelling has gone way down and my blood pressure has been very good.

So now I'm ready to get this new year started!