The Chronicles of Nani - Seasonal Allergies

 A Chronic Illness SHOULD Make You Immune To Common Stuff

If you have a chronic illness like the MS I have, Parkinson's that including some very well-known entertainers have, diabetes that my second adopted big brother had since he was two years old, lupus tormented an old friend of mine, and the thousands of people I've read about with fibromyalgia. I did that book report about Judith Heuman’s book Being Heuman, living life in a wheelchair WAY before the ADA because of polio.

We are SPECIAL. Because we get these wonderful chronic illnesses we should automatically be immune from everything common. The common cold, a common flu, and seasonal allergies should be things that we no longer have to worry about because we’re special. 

I wish that were true. Because today's relatively brief, for me, Vlog is all about how spring allergies have kicked me in the butt… because multiple sclerosis is not enough.

The Chronicles of Nani - MouSe

The Chronicles of Nani - MouSeThis weeks video starts with a great daddy /daughter day that Pop and I shared. Then it goes on to tell you how I describe MS in simple non-medical terms!

Premieres at 8:00 AM

The Chronicles of Nani Face Masks & Pumpkin Spice

While I'm locked up in the house, I've gotten some fantastic gifts from friends. My friend Edna made me a fantastic cool lapghan that gets me outside for a few minutes on hot summer days while staying cool with cotton yarn lap again without having to get fully dressed to protect my dignity to be outside for a few minutes. I got some great FaceTime calls around my birthday and a package of cat stuff from my friend Sheri, that I received on my birthday but it was not a birthday present because she knows I prefer presence over presents, but that included a mask for when I can eventually get out. I also got the gift of some absolutely wonderful cupcakes from one of my aides.

Just this past Wednesday another aide brought me medicinal coffee. It's medicinal because my doctor got me hooked on it, right? Bad doctors will let you get hooked on prescription drugs. Good doctors get you hooked a new coffee drinks!  When I was seeing my doctor every week at the end of 2018/Beginning of 2019, because I had broken bones in both of my feet, she brought me Butter Bear from Biggby Coffee a couple of times and it was enough to get me hooked. As my feet healed she helped me wean off the opioids I was on for the pain, but she never told me to stop drinking the coffee!

This week I talk about face masks, many types of which I've received as gifts, and my favorite - PUMPKIN SPICE SEASON is here!!! It's a combination of fantastic gifts I've received from beautiful enabler's of my of my lifelong passions! (Thank you to everyone of you who has contributed to that addiction over the years!)

The Chronicles of Nani - Symptoms 1

 I hope you enjoy this weeks installment of the Chronicles of Nani vlog.  

I think later this afternoon cats are planning a special blog something. At least I think I heard them saying some thing about "Using mommy's computer while she's catching up on last weeks church on the iPad."

So much going on

credits: Wintergreen by Mags Graphics and Winter Magic 

by Aprilisa Designs, Challenge word art by 

Kristmess, snowman paintings Fair Use from the Internet

Too much going on too? I have two big problems that I'm working on. I am proud to say that I actually am working on both of them. More on that in a minute…

Don't you just love the scrapbook page that started off my blog? I say that with all kinds of pride and I'm not sorry for stroking my own ego. I made that (No I didn't draw the pictures, I can't draw, but I did put it out to gather into a scrapbook page) and I’m very happy with how it turned out. The line referring to children making snowmen as “outdoor Michelangelos making Davids” is one I came up with many years ago and my husband David said it was too much to use on Christmas card. So I knew that eventually I wanted to use it for a scrapbook page and put that single line on a word document and then switched it to a pages document when I changed back to Mac. That's how long I was holding onto that line until I had time to create a scrapbook page I thought was worthy of it. I am VERY proud of that page.


All of my gifts and gift wrap are here and ready for me to put together, or anyway, ask David and/or my aides to put together for me.

To add to my pre-holiday excitement, I just found out that my niece, Rina, will be at my dad’s on Christmas Day after all! Originally, a first year assistant manager, of course has the short straw when it came to getting a holiday off and although she isn't working on Christmas was originally scheduled for Christmas Eve and the day after Christmas leaving no way she was going to drive all the way up to Michigan for Christmas day to turn around four hours later and go back to Indianapolis. As it works out she was able to get the schedule manipulated so that she can be in Michigan for the Christmas Eve feast at my cousin’s and for Christmas morning at Pop’s. I'm sure she feels great about it for her, but I will admit wholeheartedly that I personally feel blessed. I'm not so mobile and therefore not able to see my nieces anymore than once or twice a year now. Good thing at over 50 I'm still well-versed in the way 20-somethings communicate.

All I really need now is to get my wool cape dry cleaned and either spend a night driving around looking at Christmas lights or finding a night that's not quite so cold to go to the zoo and see The Lights Before Christmas. If that can't happen I'll settle for making some space for my little 2 foot tree.

The Lights Before Christmas at the Toledo zoo, 2011

Now back to my two problems. First problem, as I'm going backwards in years, is my hands. First let me describe what MS hands are like. My description of what my untreated hands feel like is imagine that your hands are twice the size that they are, almost like there's a second skin that's blown up over top of your regular hands and inside that second skin it's packed full of tiny buzzing insects and day and night that's all you feel is swollen hands stiffened by the fact that they're packed with these buzzing insects. I've tried so many different kinds of prescribed drugs and dry skin lotions so that I could use my hands, grab more things without dropping them and even type. Frustratingly, nothing was working, one of the drugs even made me sleep so soundly that I’d wake up not knowing what time of day it was and sometimes not even knowing where I was. As a thinker and a control freak THAT was not acceptable!

But now, I've become part of the cannabis generation! I have not taken up smoking or seriously doing drugs. But I use CBD ointment, which is basically the healing part of marijuana without the THC that makes you high (and gives you the munchies which I really don't need right now.) I use a combination of serum and the lotion. And I've been experimenting now with a 3X lotion that I can really feel when I put it on and it starts clearing up my hands right away. The 3X unfortunately stands for triple strength and triple price. But if it works and I can actually feel things and use my fingers to type or at least fix errors that using speech to text makes, might make it worth swallowing the extra cost.

Then there's the other problem that I'm fixing. I'm actually talking with a therapist again to help me sort out the fact that I have a huge list of priorities that's so overwhelming I can't prioritize all the priorities. I've worked with a therapist and psychologist before and as I've said in the past they are the most wonderful people in the world. I think the number one thing is that you have to be open to allowing them to help you and you have to accept that helping you is not doing it for you but it's helping you find it in yourself to do it for yourself. I'm not gonna say that it's difficult or that it's easy, that it's quick or takes forever. That depends on what the problems are that you are brave enough to tackle and strong enough to realize that you can't do it alone. So far I'm already starting to feel somewhat at ease as the professional I'm talking with is already helping me break up my priority list so I can tackle things one thing at a time.

OK now is the time where I mention again that while Rina is the dedicated retail manager moving her way up, just like her great grandmother did, her twin sister, Tori, is a psychologist in Indianapolis. To say that I am incredibly proud of MY millennials is truly an understatement.

Christmas last year

So that's me checking in for now. With a little more control over my hands I should be able to blog a little more. But realistically, I don't think the next blog will be from me because after reading JDs fill ins Marco has been bugging me that it's his turn. But I think I've got some Christmas pictures and maybe even Christmas music to share this weekend.

Please keep me or add me to your reading list. The positive comments really do keep me going.

Now I need to take a break so I can do some reading and commenting myself!

This Year, With Work, It Will Finally Get Better

The title of today's blog is my mantra for 2019. The last few years have been torture in my brain. With the help of a couple of psychologists and some other important people who are helping me there will be some changes in my world this year, changes that will make things better.

I’ve felt like pretty crappy friend the last couple months. Getting to Christmas had been rough.. If you read a few entries back you can kind of get an idea of what the end of 2018 was like for me. For a little bit I kept up with my Sunday Weekend Playlist. But I'll be totally honest. I don't even remember a lot of November with the broken bones and the painkillers I was on so that I wouldn't feel how bad those broken bones hurt it's sort of left me with a very cloudy vision of what November was like. I remember not being happy that with the broken feet there was no way I could go to my dad's the weekend after Thanksgiving for our traditional Thanksgiving dinner. We were going to do mom’s traditional sage stuffing this year too.

I do remember one funny thing. Let me start by explaining that when we were teenagers we would take turns with everybody picking on one of us for the evening every now and then. Somehow I never got picked to be teased for the night I and I voiced concern about that. “You never pick on me. Don't you guys love me?" At that time I was told I hadn't done enough dumb things to be picked on for. I guess that was a compliment but I felt kind of bad that I got to laugh at everybody else and they didn't get a chance to laugh at me. Under the influence of some serious drugs I finally got my stupid statement that I'm reminded about over and over. In fact I love the fact that I’m laughed at for it so much I make sure everybody hears about it!

My nurse picked up one of the mini Hershey's Gold candy bars that was in the candy jar on the table next to my recliner and asked me what it was. I told her it's a Bruno Mars bar. Now I really do referred of those as Bruno Mars bars because his song 24K Magic is used in the advertising and I say with a smirk that they are “Caramel and sweet just like Bruno.” Well in my; drugged up state from the painkillers I told her “they’re Bruno Mars bars because they’re caramel, sweet and crunchy just like Bruno." Nobody, including me, has any idea what makes Bruno Mars crunchy. The candy bars are crunchy - they have pretzel pieces and peanuts in them. But what I said was Bruno Mars is caramel sweet and crunchy. Exactly what the definition of crunchy is I get picked on for a lot. And I have to admit as someone who doesn't get picked on a lot, I love it.

My Christmas shopping is usually done by December 1. This year I’m ashamed to say that the last of my gifts were bought after Christmas, but, though perhaps not as personal as in the past, I did get my gifts out. My brain may not have been working well but my heart was.

Stay tuned. I’ll share some of my favorite photos that made me smile as I was being tapered off the more mind-messing and addictive drugs in mid-December!

Blame It On The Drugs

I'm eventually getting get my parts of the week straight, just not quite yet. The last couple of weeks have been um, challenging. So remember last post when I told you about surgery. The wonderful thing about anesthesia was it didn't affect me, Woot, woot! But now the next day was kind different.

That Tuesday was election day. It was also the day that I planned to give a call across the street because I'm concerned about the neighbors and I wanted to make sure they were okay. But it ended up being the morning that I was put on a stretcher and wheeled out to the ambulance to be taken to emergency.

It had nothing to do with the surgery. Everything was okay there except that there was a little bit of bleeding which is normal and it had to be explained to the EMTs who were just a little concerned. I was having problems with some discomfort in my back I wanted to move back because my bare feet were slipping and pulling me out of the chair. I don't think David heard the first couple times that I asked to please be pushback or something done with my feet sliding because when it became a frightened emergency he complained about everything's a crisis with me and finally put my shoes on so I wouldn't slide. The unfortunate problem is he didn't stick around long enough to make sure I had my balance. I didn't. I fell, quite painfully, forward.

David called 911. My aide, Heather, came in just before the EMTs did, so she had no idea what was going on except that David did let her know “Davonna’s on the floor.” That kind of launched her into instant caregiver freaking out mode. The EMTs got there got me rolled over on sling for the Hoyer lift so they could use it to put me on the stretcher and covered half naked morning me and carted me out to the street to put me in the ambulance and get me to the hospital. NOT the way I expected the day after surgery to be. I was planning to relax all day, take my meds and recover.

So at the hospital, which I requested because I was sure I had broken many bones in my feet, I got to go through all kinds of interesting things. I was lying in pain for a long time before they gave me anything for the pain. In fact that one point I screamed “OW, OW, OW, OW,” when a spasm was making my foot go insane, a foot that I now know was broken in two places, and heard a woman at one of the desks in front of the room where I was mock my screams and she and the man and woman sitting next to her laughed pretty loudly. With all of my pain it was everything I could do to keep Heather sitting down and not running out to kick butt. She did get the photograph of the mocking woman at UTMC election day morning.

People who loudly mock people in pain need to find a different line of work.

You know, one where human beings aren't involved.

They did finally come and give me a tramadol, which is one of the drugs that I do take. They took x-rays of both my feet. I can promise you when you have broken bones and they're turning your feet all over the place so that they can see the broken bones it hurts like you can't imagine when they've only given you one pill for pain. The doctor on staff took a look at the X-rays and said that because I don't walk and have weight bearing on my feet it makes the bones of my feet very pale and breaks very hard to see. They wrapped up both of my feet in ace bandages and sent me home telling me to continue taking tramadol and Advil.

For the three days after my surgery I had aides in for the full day while David was at work. So thankfully after Heather went back to get the wheelchair van, that thankfully David had already put the wheelchair in before he went to work, and brought me home, Patty was already there waiting to takeover. For my part, I just sat the wheelchair and screamed. One pain pill I already take and wrapping up my feet really didn't cut it as far as easing any pain. When we got me in the recliner and got a hold of Diana my primary care CNP, she added taking the tramadol and valium I'd been prescribed already “as needed” and to add putting ice on my ankles a half hour on, a half hour off. Patty came back for a couple of hours to do the ice until I could fall asleep. Between that and the painkillers David was at least able to sleep without me screaming all night when he had to work next day.

Diana made phone calls and hand delivered prescriptions for me so that every four hours I could take tramadol, Valium and vicaprofen together. Vicaprofen it Is Vicodin for people who are allergic to acetaminophen. Taking those every four hours actually did work at relieving the pain enough for me to fall asleep for a few days until Diana could get the full report from the emergency room and come and look at my feet.

Health insurance does a wonderful job of making sure that people in incredible pain can't get the narcotics they need. There are lots of ways for addicts to get the pills they want. For a while I was really tempted to find them and get the pills it took two days for my CNP to convince them I needed. SMH

Diana is visiting me once a week, while she is working on getting the visiting podiatrist to come and decide what will need to be done with my feet. My right foot is sprained with a broken big toe. Spasms have done a great job working the sprain back normal. (Remember we're talking about me and I always look what the rainbow even if it doesn't seem like there is one.) Now my left foot is fractured in two different places, the heal and the bone in front of it. It may need a cast. It may need surgery. The podiatrist will have to tell. Right know, thanks to (sarcasm) wonderful insurance (/Sarcasm) visiting podiatrist is not in network so my broken foot will have to be carefully covered up from cold so that I can be taken to an in network podiatrist. (sarcasm) because they truly believe increased pain will make me a stronger person. (/sarcasm)

For right now, I been moved up to every six hours for my trifecta of painkillers. I'm willing to put up with a little bit of pain, not the incredible pain I am right now without drugs, but Diana also knows my terrible fear of addiction. But believe me, if I have pain after about five hours I have the pills in my hand and I'm ready to shove them down my throat!

David was gone but he did bring 2 bananas and flowers for me.

David left Friday for a football game and a long weekend with his family in Florida and was back yesterday after work. I’ve needed almost 24/7 care while he was gone. I've had two wonderful friends who've had coffee with me every morning. One even brought me two cream filled long johns! My aides have been here longer during the day, my doctor visits once a week and texts daily, and a nurse spent the night every night he was gone. I was well taken care of. The good news is that the ER visit maxed out my out of pocket expense with the insurance company. That means, although they don't cover home health aides, everything else is free. That means the MRI I still need to get and if they have to do surgery on my foot, at least it's free. See? Rainbow.

Send me a prayer, are wish me luck.

Oh Man!

When I rejoined the blog-living it was not my intent to be a weekend blogger. In fact this week I planned to start off Tuesday talking about anesthesia. I had surgery on Monday and spent the last couple weeks scared to death because I’d never been completely knocked out before.

Nani and Pop: “We will MAKE you smile with us”

I cover my fears with humor. That’s genetic. My dad does the same thing. The surgical procedure was a feminine one. I had some bleeding which is totally unnatural because my last period was 14 years ago. More standard testing revealed some polyps, I’d had benign polyps before, so that wasn’t an alarm to me, but the lining of my uterus was thicker than it should be for someone past menopause.

-male readers who are squicked or embarrassed at this point, especially if you have kids, shame on you!-

As I was saying, the doctor ordered a D&C, Hysteroscopy and Cervical Biopsy. The combination of things all done at once required complete relaxation of everything, that meant control freak me taking no part in it. They had to put me under.

Like I said, covering fear with joking is hereditary. Pop even enjoyed my freak out thought that, because finding a virgin in 2018 was so difficult, the second coming would most definitely come from a postmenopausal woman, likely one who never had a child to mimic the original “never felt this kind of pain before.” Well, so that would explain the uterus lining being too thick. The angel just hadn’t visited me yet! My aide, Heather, was laughing with me and asked, “so your the new Virgin Mary?” I said “no, I’m the Postmenopausal Mary.” Then I stopped abruptly.

You see, I was raised Catholic and in the Catholic Church you have to be baptized with the name of a saint. In 1966 there was no saint Davonna. So I was baptized as my middle name, Maria. So according to the Catholic Church I AM Mary!

All jokes aside, I of course do not believe I am destined to carry the second coming. But when discussing the different ways people come out of anesthesia, and my aide describing when she's been under anesthesia it's coming out of it like she's drunk. I realized that, being somebody who is a silly drunk, I probably needed something pinned onto my hospital gown that said “please, please, please, don't be offended by anything that I say coming out of anesthesia!” I’d planted in my brain a very crazy and offensive thought. I’ve always believed God has a sense of humor, but I also believe in never insulting someone else’s beliefs. Now I’d given myself new stress.

The good news is those wonderful genetics that I get from Pop, coming out of anesthesia, I was asleep and then I woke up and it was just like waking up. I didn't have any moments of stupidity or goofiness, it didn't affect me at all. My dad said he did the same nothing when he's come out of anesthesia before. Good genes or a strong brain, my inner control freak resisted all the way through!

The doc promised to call as soon as the pathology reports were available. And that call was Tuesday. I asked if she was calling to post check on me and she said no, the lab results were back already: Benign, no cancer. YAY!


Oh, there is a ton about Tuesday I’ll write about in a few days. Stay tuned! It was quite a week!

Middle-aged Grumblings

When I turned 50 I made the declaration that “now that I am over 50 years old, I never have to be wrong again." In the years moving towards 50, I heard so many people that seemed to believe people younger than them couldn't possibly be doing something right because it was different then they do it. I looked forward two having that superiority.

Okay, that proclamation really was a tongue-in-cheek joke on my part. I personally think people that are that close minded and refuse to continue to grow are both people that should be avoided and pitied. My mom always told me that's the day you stop growing is the day you start dying. But the fun part of the joke is it's a joke that never ends. But sometimes I really have to wonder if complaining about what seems to be change for the sake of change is really a joke.

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My first complaint today, as a 52-year-old woman, is one that I'm a little suspicious might be something that's the fault of someone, or a gang, my age or older. When did it become the custom for hospitals to call patients a couple of days before a surgical procedure and press them for money? This happened with a different hospital and a different procedure a couple weeks ago too. It's something that never happened to me before. In the past, I schedule a procedure, the hospital and my doctors have all of my ID and insurance information, the procedure is done and a few weeks later I received the bill for the portion I owe. Now twice two different hospitals have called me just a couple days before the procedure disguising the call as if it's a courtesy call to be sure you're ready for the upcoming procedure and if you have any questions. Then they tell you that you have a patient responsibility of “X” amount of dollars and can you pay that right now? Wow. It's not enough if I have insurance? Both times I said I'd like to be billed and they said okay and that was really the end of the phone call, leading me to believe that that was the only purpose of the phone call. I haven't been into the emergency room in a while. Do they still treat people in an emergency even without insurance?

I have to be honest, I was both insulted and unsettled by the phone call, especially the one I got today. I'm having a surgical procedure done on Monday and, believe it or not, I’ve made it 52 years having never been under anesthesia. I'm nearing the end of the week where I haven't been able to take vitamins, half of my prescriptions or even drink herbal tea. I'm nervous and frankly, scared. The last thing in the world that I want is for the hospital to be calling me about money days before my surgery. Are they suspicious of something I fear? If I die on the operating table how will they ever get paid?

I don't truly believe that my impending death is the motivation for the phone call. Personally, I’d hate to be the person given a list of phone numbers and money that's not owed yet because services haven't been rendered, and be told that I needed to make phone calls to shake the patients up for their lunch money.

Yeah, it's business, right? It's no different than your favorite baseball player on the home team will probably not finish his career with your team and will probably be playing for someone else's team when he becomes a free agent. If I'm not so important to athletes or teams as a paying fan why should I expect hospitals to give a damn about me as a patient? Surely there are more hospital patients than fans of any particular team which makes us even more expendable.

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My other current social complaint truly is about the whippersnapper generation. I don’t, for the life of me, understand how Dr. Seuss and PG ever end up in the same advertisement. But there's a Grinch movie out this month that's computer-animated and rated PG.

I haven't seen the movie, nor do I have any intention of seeing it. That is actuallyone of the cool things about being 52. I am completely fine with the animated version of the Grinch on TV that's been out every year during the holidays since I was a child. I also don't actually have to see it to criticize it.

A bad guy with a network TV rating 

Oh, but work with me here. Those of you that cyber-know me and especially that know me in person or on the phone, know that I'm not going to criticize something I haven't seen. But what I'm criticizing, what I'm questioning, is what part of a movie that is made to attract young children makes it a PG rather than a G movie?

How is making a Dr. Seuss based movie with a PG rating incredibly different than marketing cigarettes in a way that’s attractive to children? Candy and bubble gum cigarettes don't exist anymore unless you find them in an "Old Timey" Candy store. I used to love the bubble gum cigarettes especially because if you blew on them they puffed smoke like a real cigarette. I think the fact that adults in my world smoked and I wanted to emulate them had a lot more to do with what ultimately made me try cigarette smoking than the fact that I occasionally indulged in the sugary puff. That's especially true since when I was a kid I was more likely to spend 15 cents on a pack of baseball cards or big pickle in a plastic bag with lots of pickle juice.

What did they do to a children's story to earn the PG rating? Does the Grinch say something like"Christmas sucks. I don't care if I'm an ass?" Or does the new version have him deciding to steal Christmas as a result of a drug trip? I just want to know what do you have to do to make a children's story a PG movie? And couldn't that have ended up on the cutting room floor so it's still a family movie that you can take young children to see?

I may be disabled and not working now, but as part of the greater entertainment media field, I'm truly disappointed that my former industry would create this.

Off To A Slow Start

It's January 5 already. Ugh.

I had plans. I actually had a lot of things already set in place the kick off 2018. And I haven't given up on those plans. I’ve just chosen to push them back a little. Well maybe things were chosen for me. (— makes erasing motion in the air in front of me —) Things weren’t chosen for me; challenges presented themselves and my response to those challenges requires a little extra time. Therefore I'm pushing 2018 back a little. It's my hope that I'll find the elements I need by January 15. I might even try to get that schnapps I've been looking for since the beginning of December and do a countdown and toast on January 14.

But I'm getting ahead of myself

Right now in my mind it is still the end of 2017 and I'm making plans for 2018 to kick off in a much more controlled by me way. Right now I feel like I'm still standing in 2017 and I need a scraper to get the year off my shoes. I hated 2017. We lost two cats. I was taken off MS medications because my liver panel levels we're too high and they're still too high. The doctors haven't been able to figure out why and until they do no MS meds for Nani. Where that is bad is that I'm starting to experience more or worsening MS symptoms. The biggest thing that means is that numbness from the elbows down I'm both arms that I talked about before. That makes blogging, scrapbooking, even writing in my own personal journal very difficult and some days impossible to do. The cost of aides, which is in no way covered by my insurance, has depleted the most of my retirement savings and there was a scare that that wouldn't even be something that was tax-deductible anymore. At least that was saved in the reverse Robin Hood tax bill. There were enough people that wrote to their members of Congress and told them "if you let this happen I'll do everything in my power to make sure that you NEVER have a seat in any kind of government again.” (--whistles and looks to the sky--not that I'D say anything like that to a member of Congress that represents me) My aides alone cost close to half of our household income.

My biggest regret in my life as we start the year with a greater threat of nuclear war than there has ever been in my lifetime, is that I didn't register properly and didn't campaign harder in 2004. With the campaign slogan I created in 1983, “An End To War In 2004,” if I'd been serious and louder I might've at least gotten some influential people laughing at the little 30-something who would be a write-in President Of the United States, but giving some thought to what she was saying. My health plan was still better that anything Washington has come up with since then. And getting rid of the designated hitter was part of my platform too. I also still think that's right but it's part of my platform I’d have given up for the healthcare. (—shaking head—) Too flexible to be a politician.

But seriously, my biggest challenge right now happened on New Year's Eve. Not only did one of my regular Agency aides get into a car accident, that thankfully didn't harm her, that totaled her car, but the friend who is going to be my aide on a regular basis starting January 1 also got into an accident that total the only car she and her husband shared. She is fine but she is no longer able to be my aide. In the first four days of the new year there's been someone into help me once. I'm not saying that David hasn't been help when he's home, but that he's not home all the time is why I need an aide in every day. I've been feverishly looking for a couple of aides that I can afford. Sticking with the agency is really not an option. That I can use them at all now is through a grant from the MS Society that now is barely going to last until the 15th. I do have someone coming in almost every day next week. This is the biggest challenge and why I am pushing 2018 back a couple weeks. I simply refuse to allow this week especially to be part of the new year I had so much hope for.

I do have a great hope for 2018… when it starts on January 15. I contacted some potential caregivers from care.com. I don't know if it's nationwide that there're lots of ads for care.com, or if it's just the TV channels I watch. But I've interviewed a few decent caregivers and it's on my schedule to interview a couple more with a job post still running on the site.

My other great disaster in 2017 was that my scrap booking extended hard drive broke. The information is still there but the physical input to the drive came out so I can no longer use the drive with my computer. That means either someone door company that does disk retrieval we'll have to try to save my information or almost 50 scrapbook pages will have to be redone. They hadn't been transferred because of redundant disc yet. The worst part is my scrapbooks we're done until 2017, completely finished. The plan was to start 2018 with just the last of 2017 to finish and I would be scrap booking current and memories that I wanted to scrap. But if I can't save the data from that drive, I'm still 50 pages behind.

The 2018 prep is rescue the data! Finding some place to get that done hasn't been easy. The only place locally the does anything like that gave me a brochure for a place in California but does disk retrieval. They can do it for $700. I call and get a case number but I can put it on my desk and mail it to them. The good news is if they can't retrieve my data there's no charge. The bad news is if they can retrieve my data it's $700! There's a place in St. Louis that will do it for $400. My creative time alone might be worth that much. That’s about $8 a layout. Figuring the faster layouts take a good four hours to do, plus purchased scrapbook kits on that disk, it probably is worth it, but I can print two books for that price. David offered to make retrieving the data my Christmas present. I said no because it cost so much. Dammit little angel on my shoulder. LOL

One of the lost pages. 

Print-quality pages trapped on the drive include 

3 Christmases, the congressional softball game, 

“Nani at 50” pages and the Kaline tribute pages.

It still makes me wonder if I shouldn't have pursued the geekier part of computers instead of the creative. I am the geekiest member of our household, but that and $400 will retrieve my creative data from my drive!

Medic!

Recipe for Mammo-Grahams at Apron Strings

First up was some good news for me. I got my mammogram a couple weeks ago and the very skinny envelope came in the mail once again saying that there were no apparent abnormalities. Yay! No matter what else happens that's negative I can say that I still have perfect blood sugar and perfect boobs. Even if the boobs aren't as great to look at as they used to be, they're still 50-year-old perfect!


Additional medical stuff that might give you a window into why I haven't blogged a lot or even read blogs a lot for a while, I had, and I'll add survived, my first non-dental surgical procedure done this past week. I did say a few blog posts ago there's been nothing that's life or death and I stand by that; it was outpatient surgery and not life-and-death. The big issue of it for me was that I've never had anything in the way of surgery that wasn't dental surgery. I had my wisdom teeth taken out at 18, all of them, and had extractions as a result of abscess teeth because my teeth are hereditarily chalky and don't hold crowns. But, yeah, in 50 years that's all the surgery I've ever had. So the thought of even an outpatient procedure was obsessively scary. It was done with sedation and local anesthetic but general anesthetic was a back up if that wasn't enough. It's the general anesthesia possibility that scared me. I don't think there's anything more anti-control freak than being knocked out so far it takes you a scattered while to come out of it. Thankfully, general anesthesia ended up not being necessary. So I've now had surgery but I've never been completely knocked out. That can stay that way as far as I'm concerned. The doctor ended up wanting to keep me overnight for observation. There was nothing wrong it really was just for observation and they pretty much came in and cleared me for going home Thursday morning. Of course at hospitals clearing you to go home in the morning at 9 o'clock means you actually get to go home about about three.

I prefer not to share anymore details about surgery, but suffice it to say it makes wheelchair living safer, easier and less painful.

I had a setback, but I'm slowly building myself back up with all the optimism I can muster!

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!