More To Come!

Credits: Sports Galore by Magical Scraps Galore

Nanimoji created with Bitmoji app on iPad

If you're reading this, I hope you got a chance to see the debut of The Chronicles of Nani vlog. I'm posting a blog episodes here as well because the YouTube channel and The Chronicles of Nani blog are partners. I'm still learning a lot about the YouTube channel and I'm sure I'll get better as it grows. I don't know for sure that you have to have a YouTube account or a Gmail account to subscribe to a YouTube vlog. But even if you watch the videos here on the blog, I'd really appreciate it if you stop over at the YouTube channel which you can get to from the videos on the blog and hit subscribe. You only have to do that once for me to get the YouTube credit and then you can continue just watching the videos here.

My second vlog, about sports restarting in 2020, will debut tomorrow, Friday, at 8 AM. My future vlogs will all debut on Friday at 8 AM. The only reason the first one debuted on a Tuesday is because I wanted my YouTube channel to launch before I turned 54. I turned 54 last Wednesday. One thing I've definitely discovered with the first two vlogs is that it's a lot easier for me to do the video and a little bit of editing, which I love video editing, than to type or speech to text and go back to fix the text.

I record video on Saturdays, because that's the day that David has to go in the office to work instead of working from home. (That's the reason why I can't do anything that requires a lot of typing during the week. I need to be quiet when he's working at home. So speech to text is not possible at that time.) Put in earbuds or put on noise canceling headphones and I can edit the video pieces until my hands fall off. Plus I've been told that I have a good voice and a nice smile. Also, if it's video, you’ll KNOW that I'm telling the truth about how I feel or am feeling. I've never been able to get away with lying if you're looking at me.

I have discovered that if it rains or there are gray skies on Saturday, I have two problems. First my main source of light comes from the big picture window in front of me, so if it's gray outside the lights not so great inside. Also, it may be more importantly, when it's gray outside and the barometric pressure is low it tends to make my MS symptoms worse, that usually means my legs hurt more, my arms are more numb and worst of all my speech seems to be a little worse because there seems to be a delay in the connection of my brain and mouth. But I still make it work.

My video stuff is the biggest thing in my world right now. I'll try to make my next BLOG entry about something else! In the meantime this week, I hope you come back tomorrow and see the next vlog!

I Need To Vent

I really hope that things can get moving on replacing the seat of my wheelchair. That's been “in the works” since May. The company that's in charge of that project keeps dropping the ball and letting it sit there. Don't think that that's not gotten to the point really getting under my skin. They did the measuring and put the order together for the new seat around the end of May. When all the paperwork is completed and filed for the insurance company, I’ll have a new seat on the existing base. Except for the dust on the bottom, it’ll be a whole new chair. But the company isn’t having problems with brain-burps. They are having out and out loud brain BELCHES.

When I call to get an update of what's going on from the sales rep, because my therapist told me that's the only way I'm going to get them off their butts is to call her a couple times a week, I get to listen to her whine about how hard her job is and how difficult doctors are to work with. Personally, I think she's in the wrong line of work if it's that tough for her.

Life without the new seat for my chair is becoming even tougher for me. I've been worried for the last couple months that some of my advancing physical problems I've got are related to the MS taking a new turn for the worse. The pain in my legs has become almost constant, losing muscle control of my hips, pain in my back and the incessant sore feet have become very difficult to exist with and very stressful with me thinking that the disease is worsening. After doing some reading I found out that these issues I'm having are issues that result from being in an improperly fitted wheelchair all the time. In May, when this process started, the rep who did the order and measuring told me my wheelchair wasn't fitted properly for someone who is in it all the time. Five months later I still don't have a chair and all the things that are hurting worse are hurting worse because I still don't have a chair. I don't know. I think my job being someone who needs a wheelchair who's experiencing worse pain every day because I don't have the right wheelchair is WAY HARDER then a sales rep who doesn't like calling doctors.

I've talked to lots of people about this and there is a timeline with the date this coming soon where all the paperwork that's been done will be outdated and have to be redone. It was suggested to me, when I asked about switching vendors, that at this point in the game too much paperwork has already been done to start over but if that time where the paperwork becomes void happens before I have a chair we will definitely switch vendors. I honestly kinda hope that they screw up and we have to start over so they don't get the business because I've already been given more business from them than I should have to endure. Mobility-care is a big business, but it's still a niche market.

Happy Little Pill and Happy Little Pumpkins!

Yesterday was a really rough day, I mean the type of day I just don’t have, rough! I know that’s rough because I’ve been told that many of what I call “little challenge days” are “shoot me please” days to others. You see, yesterday I got to find out what one of my meds really does for me! I ran out of the medicine I take for spasticity and stiffness and put in an order for the refill just at the right time that I wouldn’t be able to have it delivered or ask David to pick it up before I’d been without it for a day. It’s just 2 pills in the sea of a gazillion I take and it’s not even a specialty pharmacy pill. How much harm could missing ONE day be?

Let me tell ya, all pills are NOT created equal! A thin little round pill can be a lot more potent medicine than one of those big horse-pills. I still had the giant anti-inflammatories that reduce swelling in areas and thus quell pain, But the smaller pill seems to do a strikingly lot more! I don’t think there was any place on my body that wasn’t stiff and in pain. Even sitting at the table, when I usually don’t feel pain and little discomfort, was an excruciating experience yesterday. When there weren’t little shots of pain beaming through my legs and arms, there were stiff spasms I had little control over, some in my legs so strong they almost made me slip out of my chair!

If you’re even thinking for a moment “Oh, Nani I feel so sorry for you,” then trust me; you didn’t want me to write a blog post or visit/comment at your blog yesterday. My Papa was a Navy sailor in WW2 and the language and decibels those words were screamed in when I tried to lumber into the bathroom would have confused and offended him. (I’m not proud of that but owning my shortcomings gives me the right to be proud of my accomplishments, right?)

Today, properly medicated in the right amounts at the right times I’m feeling like me again. I speak like me again too. I find it easier to live with the PG rated version of Nani too!

Tonight is Game 3 of the World Series. It’s tied 1-1. It was sad to see The Royals lose their first game of this post season in Game 1, especially so brutally. I harbor no ill will to the Giants or their fans, but Kansas City is such a great story since it’s been so long since they won the World title and the momentum and downright joy the team and the city brought into this season and especially the playoffs is just electric. Are they heads and tails better than the Giants? No way, they both deserve to be where they are right now. But with two World Championships since 2010 (and it doesn’t matter that in 2012 they swept the Tigers) I’d just love to see a fresh logo in that World Chaps spot.

GO ROYALS!

Since we already didn’t end up able to pass out candy last year because it rained on Halloween and the reschedule night David and I weren’t in town, I made the sad decision to stop doing the door service. It had been getting difficult for me by 2012 when we had 169 kids visit. I’d prepared 150 candy bags for last year that were donated to the school David’s work sponsors sine I couldn’t share them in person, I still shared with kids. This year I’m just not physically up to it. Maybe if I could figure a way to remove the door and be able to sit there without the house getting cold or any cats getting out… I ran several legit scenarios through my head too. I love giving candy out and seeing all the kids in their costumes. The truth is being home while trick-or-treating is going on outside the door will really compel me to fix this problem before next year. David is one of those no-kids guys who works on Halloween so coworkers with kids can make sure their kids can get out. (One of the many things that makes me adore him) It means I’m the only one home, so there’s no one to fill in or help if I start to wear down. For next year I think I’ll see if I can find a local volunteer through the MS Society to come over for a few hours and help me set up and pass out candy. (That idea just popped into my brain and I’m kicking myself for not thinking of it a month ago.) That would actually be pretty cool. A volunteer to help me pass out candy and then after we close shop I can have a bus scheduled to take us to Bob Evans and I’ll treat them to dinner as a thank you. I might have a good plan for Halloween 2015 – I’ll be back, kids!

Last thought today: It’s the heart of Pumpkin Spice Season! It’s a huge fad at this time of year now! I’m proud to be one of the setters of that trend because now I get to reap the benefits of everyone trying to one-up the last guy on the pumpkin goodness. I really was pumpkin when pumpkin wasn’t cool. From pumpkin pie and the fresh pumpkin seeds Pop used to roast after making our jack-o-lanterns when Dave and I were kids to using a can of pumpkin spice and Cool Whip to make low-cal desserts many years ago, I was a pumpkin pioneer! There wasn’t even a question the first time I saw pumpkin spice cheataccino in a gas station. Now every fall holds some magical new pumpkin discovery. This year is the almonds.

Oh my, the Blue Diamond pumpkin spice almonds are incredible! Similar in style to the cinnamon roasted almonds that can draw you into any festival on their smell alone, the pumpkin spice almonds are little cans of euphoria for the pumpkin aficionado. They are 7 for 1 Weight Watchers point and a healthy fat if consumed in the proper portion. My RDA 2 heathy fats a day is 14 almonds, by the way. You know the first thing I had to do after I tasted them was figure out how many I could have in a day! There are lots of ways to make that seasonal pumpkin spice addiction fit into a healthy eating plan; and I know every one of them!

Wheelchair Fashion

Okay, THIS makes me sad:

It’s a ruana called Tassels and Scrolls. I love it! The colors, the style, not the boots, but with black leggings; SO Nani! I can totally afford it, so why does it make me sad? I can see those gorgeous long fringed hems getting stuck and subsequently ripped in the wheels of my wheelchair.

It’s not a one thing in the online store either! There are these ones in style and color that seem made for me too:

Wine Country Ruana

Willow Cardigan

I love fringe and dangly things, always have. But even my favorite type of jewelry, bracelets, battle with the chair for existence! That’s not so true with the power chair because I’m using the toggle controller, but when David and I go out someplace nice or if I go out with friends it’s usually with the manual chair. Kelly made me a wonderful Pandora-style bracelet with very personal charms, 4 of them dangly. Three of them got caught in the wheels and were flung off to the side, and lost. Even my medic alert charm was ripped from the bracelets.

I’ll be honest, through dealing with getting used to MS, the chair and dealing with the depression I shook in March after actually living with it for a couple of years I’d abandoned my personal style. I’d try to get it back, but the depression thing had me giving up pretty easy. Well now; no more!

Kelly visits, then Rina and I see family in Michigan. Then I travel for a week with David. I’ve not been so good at counting my Weight Watcher points. I need incentive, rewards. So here it goes.

I’m going to reward myself for every ten pounds lost. With slow and healthy loss that’s about once a month. I’ll give myself one piece of clothing or costume jewelry as a reward. I’m not going to lament what I can’t wear in a wheelchair because what I can’t wear in a chair just looks foolish like I didn’t know how to dress. Besides long uneven hems with fringe look better standing up. There are lacy and dangly things that are still Nani-style and cute when sitting without winding themselves in the operating parts of the chair.

Stay tuned for my new style…

MiSery Loves Company But Company Kills Misery

I signed up yesterday for Walk MS on March 30. I joined late in the game with less than a month for fundraising, but I also set my goal low for this first year I’m doing it.

Now I bet you’re still trying to process the fact that I said Walk MS, right? I mean I’m in a wheelchair after all. I found out some things about Walk that inspired me at the Buckeye Chapter of the MS Society’s Open House this past Thursday. First of all you don’t have to walk! There are 1, 5 and 10 mile routes and you can walk or use a wheelchair/power chair. A lot of the walkers don’t have MS but are raising funds to find a cure because they are affected by it just the same because a family member, friend or coworker has it. Our Walk MS team leader walks because both of his daughters, in their early 20s, have been diagnosed with MS. You can also participate by volunteering or simply attending the event.

No matter what kind of MS symptoms they have, participants who have the disease may or may not be able to actually walk on walk day. This is why the donations are not per mile as they are in many charity walks. Weather or an exacerbation on Walk day can change the drive of as “MSer” to actually do the walking. For my part, I hope to do the first mile in my power chair. You can see my profile page and donate if you are able at my Walk MS page here: http://main.nationalmssociety.org/goto/davonna

It’s been a full, but in a good way, week in the MS part of my world since we got back from our short Maryland trip. March is Multiple Sclerosis Awareness month, so it makes sense that it’s a busy MS month!

The day after we got back was my first of four training teleconferences to become an official MS Society support group leader. Our self-help group had to select a leader and a new location. We’d been at our chapter’s local office, but we need to officially meet off-site. I’ll have a coleader who is planning to go through training after the busy season at her job is done. It’s a little overwhelming with all the information and organizing to do, but the jobs I’ve loved the most have started the same way. This is a volunteer position, but it will add current project management work to my resume!

Speaking of organizing jobs and MS, Christine is a member of our self-help group who not only has MS but is also a breast cancer survivor. She’s the leader of the Leap Frog for MS team at Bike-To-The-Bay in June. She not just the team leader, even with foot drop from MS, she’s going to do the 35 mile ride! Be sure to visit her Leap Frog for MS blog and see her updates on the team and her training progress and read her inspiring story! For any of you who’ve considered me to be an “up” person, you’ll love Christine!

Thursday night was the Toledo office of Ohio’s Buckeye Chapter of the MS Society’s Open House. I’ve never seen the chapter office so full of people! I was introduced to reps from the MS Society’s main chapter office as the “newest self-help group leader.” Having a “title” again actually feels pretty good. I networked with some other group leaders and got some information about Walk MS, which is how I ended up joining that after meeting members of the team I joined. It was a fun evening and I actually won the raffle for an MS gift basket! I also brought home some window clings for car windows. I gave one to David and I’m going to give them to other members of my family with a “please put it in your car window?” I’ve said I wanted to start being more active in awareness and doing everything possible to help in solving the mystery of this disease and the past couple of weeks have been a big step in that direction.

I also met a friend for lunch yesterday who I’d been emailing with for over a year but had never met in person. She was diagnosed more recently than me and we’ve been able to support each other through the trials of adjusting to living with the challenges of the disease. We talked through lunch for a couple of hours which seemed like no time at all and we’ve agreed we need to make it a frequent lunch meeting!

The past few days have definitely been the first time MS has made me feel empowered, but I know it’s not the disease itself that empowering me. It’s he supportive and other optimistic people who have or are affected by it that empower me. We fight together and what knocks one person to the ground can still be punched back harder by an army.

Disabled and Disenfranchised?

The powerchair might fit if it had no arms

It’s not quite as bad as the title infers, but this morning was, um, interesting. It wasn’t too cold and our polling location is very close to our house so David and I “walked” over to vote. That’s something I haven’t been able to do since the location for our precinct moved to so close because this is the first year I’ve had the power chair. So we closed up the house and made our way to place our votes. However there was a problem.

We crossed the bumpy parking area to the doorway between the school and church and lo and behold the door opening was not made to accommodate my chair! Last year we went downtown for early voting and the year before we took the manual wheelchair and I guess David must have pushed me through the door with my arms forward because there’s no way I could have done it myself without bashing my elbows and/or skinning my knuckles.

Here is where the interpretation of the ADA term “reasonable accommodation” comes into play. If I go to a store and my chair can’t get through the aisles, reasonable accommodation may include bringing me a variety of items to choose from and letting me select the items I want to buy, essentially bringing the store to me. It can also mean taking my order and delivering items to my home with no delivery charge as I wasn’t able to use the store in the same way other shoppers can.

Today, the reasonable accommodation, since I couldn’t get in to cast my vote, was that a provisional absentee ballot was brought out to me. Had it been colder, snowing or raining I’d have been sitting outside in the weather waiting for all the paperwork to be brought out. Regular voting for me is adjusting the screen down and using the touch screen method everyone else uses. Absentee voting is filling out an envelope and choosing which candidate and issue responses by filling in spaces by hand. One of my MS issues is the inability to write well and sometimes to even hold a pencil. There was a book to hold under things to write on but no table and maybe it's just me but I don’t really like the idea of people circled around me able to read and see what votes I’m casting. The voting machines have privacy walls for a reason. So, I backed up a little and colored in the spaces for my choices in midair. If I’m voting absentee, I’d prefer to do it from the privacy and practicality of my own home or at least the more private back table of a crowded coffee shop.

The two gentleman who tackled the problem of there not being accommodation for a powerchair to get into the building were great in their efforts to make sure I could vote and very sincere in their apologies for the situation, but it’s an issue that should not have come up. It’s a building that’s open to the public and should be accessible in accordance with the Americans with Disabilities act as updated in 2010.It's also a location selected by the board of elections that does not offer equal access to voters with disabilities.  I can't believe they don't consider this when choosing places people go to vote.  Updates should have been made to the building by spring 2011; full out construction renovations should have been completed by March 2012. It’s November 2013; it’s unquestionably in legal violation.

Today the accommodation was as reasonable as could be given the circumstance but it should be a call to attention of a bigger problem. In 2014 it won’t be acceptable.


(The Board of Elections will be getting a letter.)