Disability

 

I want to write a book. That’s not news. It’s in the back of my mind just about all of the time. But, I have a million ideas about the kind of book to write. Then, I had an issue this week.  I let the prescription for my SSNRI lapse.

It was unintentional. I had guests and I let them distract me (I also missed an MRI appointment I had scheduled). Next thing I know, it’s the weekend and I’m out of this medication.

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The acronym SSNRI stands for selective serotonin and norepinephrine reuptake inhibitor. I take it for my Fibromyalgia, my IBS (irritable bowel syndrome), my depression, and it also has an impact on my dust, pollen, and mold allergy symptoms. For some reason, I kept delaying calling in the prescription refill.   Mainly because I knew they were expired and the pharmacy would have to call my doctors and I knew I should call as early as possible. Then, in general, I just procrastinate as part of my depression and such.

Yes, you read that right, doctors and prescriptions plural. Originally, my Gastroenterologist prescribed an SSRI (close, but not quite the same thing). Actually, she was a Nurse Practitioner (NP), but she was very helpful and did a lot of blood work for me when I first started having FM symptoms. When I finally ended up at the Rheumatologist, she prescribed an SSNRI and I ended up calling my Gastro Nurse Practitioner and asking if I could swap the two.   Later, I asked my Primary Care Physician if I should up my dose because I can’t get out of bed in the morning. She added a second pill to my dose.

Monday evening I called in the prescription refill and talked to a person at the pharmacy. I had a quilt class Monday afternoon and Tuesday morning, at the place I work. I also had a staff meeting at the same place Tuesday afternoon. I work selling Sewing machines anywhere from zero to 36 hours every two weeks. Sometimes getting out of the house is a great thing for me to do and it’s the catalyst for me to get up and do things with my day. Working a full day is generally too much, but I do it and come home and do nothing else the rest of the day.

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At Tuesday’s meeting, I talked to a fellow employee with RA (rheumatoid arthritis) and discovered that everyone seems to have issues when they reduce or go off their SSNRI. This was great confirmation for me because I had been feeling funny all day after 2-3 nights without that medicine. I woke up late for my class on Tuesday morning and I heard the pharmacy leaving a message that both doctors offices said they had no record of me. I stumbled out to the car anyway to go to class since I’d been late to class the day before and knew my boss would be annoyed with me that. At first, I thought the stumbling was lack of sleep. Though I likely got more sleep than I think I did, I felt like I was waking up every 15 minutes either in pain or gasping for air because of my congestion. After I scraped the idea to go to class, I realized I was feeling sort of, well maybe it could be called dizzy but it was weirder. It was sort of like being drunk, but not. I had the feeling that my body was turning to the right.

I resolved my prescriptions and by bedtime on Tuesday, I felt almost normal. But, I lost pretty much all of Tuesday and part of Monday. This is where I think there is something missing out there—knowledge that a large portion of the population has these invisible disabilities that might impact their life in small ways every day or might impact their life in huge ways. I feel like the average Joe doesn’t know how much these illnesses impact people’s lives.

The little symptoms I had when I was first seeking a diagnosis were annoying but not totally debilitating. Mostly, I spent a good portion of my weekend sleeping or just sitting to try and recover the energy I expended during the week. About 6 months later, my symptoms flared. I remember sitting on my couch, in pain all over that wouldn’t respond to Advil or Tylenol, and thinking that my life as I knew it was over. At the time, I could not see being able to go to concerts or walk around museums or go hiking or pretty much anything any one does for entertainment. It was depressing. After starting the SSNRI, my pain got a lot better during the day. I continued to use topical ointments like Icy Hot and Ben Gay to sleep at night. It took about 5 months for the pain to go away altogether, but it took a couple of years to not be paranoid that whatever I did might send me back into that unrelenting pain I’d been experiencing. Lots of things cause a temporary spike of pain, but I have not had more than a day or two of pain since that original flare of symptoms.

 

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In the information I’ve read about FM over these past few years, I noticed that medical experts do not recommend quitting your job. I left because I felt I needed to have the option of working at home and my bosses told me I couldn’t do that anymore. I didn’t do what I needed to do with the Employee Resources I had at my disposal. At the time, I felt like it was all I could do to get my work done and the most basic of home, child, and self care tasks.  Plus, I was pretty sure I wasn’t disabled enough to get disability retirement.

Now, I wonder how? How can I possibly get a new job when I need so much time to take care of myself? How can I get into a pay scale similar to the one I had at FDA ($50/hour)? How can I go to school to gain credentials? How can I restart when I’m 55 years old and I have no energy?

 

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Facts

I am having trouble with the inability to prove facts these days.  People in the public eye are now claiming that certain published information is fake.

A fact, so far as I know, is a piece of information that is verifiable or provable and/or recognized as true by all parties.  Like the sky is blue (or we see it as a color that we all identify as blue) and grass is green (unless under or over watered).   A cat is a cat.  A dog is a dog, etc.

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In this era of the internet, we have to determine the legitimacy of a website, which should mean whether they verify the information that they publish.  I personally trust the major newspapers and news websites like the Washington Post (my local paper), the New York Times, Huffington Post, etc.  I believe that they follow the journalism ethics code, wherein they verify their facts by whatever method is appropriate by consulting a source record (birth certificate, census, etc.), the person that knows (an expert, for example), or results of appropriate testing.

I do recognize that not all content in news stories is fact.  Some is opinion. Some is the slant of the article.  Even the most dry of political articles tends to have a tone to it that leans left or right.  But there are still facts within the most opinionated of articles.

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If we fail to recognize verified facts as facts.  If we don’t trust sources that take appropriate measures to verify what they publish.  If we place our trust instead in sources that don’t verify their facts, where are we?  If some of us choose to continue to trust the major news sources while others choose to trust sites that do not fact check, how can we discuss issues?  How can we come to compromise?  I have been struggling with these issues nearly every day since last November.

More Big Knitting

Knitted Footstool

I bought this footstool at our local ReStore (Habitat for Humanity resale store).  It cost me about $30.

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I cut pieces of foam for the stool.

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I cut the legs down and sanded off the finish.  Then I stained the legs with an ebony-colored stain.

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Stained stool base

I dyed some plain white medium weight woven cotton to nice mottled gray color with RIT dye to make a lining for the knitted cover I’m making.  I took some measurements and determined how to cut the

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The foam is a bit larger than the top surface of the stool base.  I folded the fabric in half, twice to find the center and then I drew the half of the estimated foam size in the middle of one half of the fabric (picture below is fabric folded in half).  I then extended the lines to the edges of the fabric piece. (Note: from my drawings and calculations, I knew that the fabric piece was approximately the total width and length I would need to cover the top surface of the stool and go down the sides).  After adding a half inch for seam allowances, at each corner.

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After cutting out the corners, I had the following piece of fabric, which is shaped almost like a plus sign.

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I sewed the corners together.  I still need to staple down the sewn cover.  I will then use it to measure the progress of my knitting.  I am using Mondo yarn from Berroco in a lovely gray color for the knitted cover.  Currently, I have about 1 long side of knitting completed, part of which is shown in the following photo:

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I will update this when I’m finished.

I also have a second stool in waiting for another knitting replacement cover.

 

 

Changes

Okay, so a lot has happened since I last posted.  In fact, when did I last post?  August?  Yes, August.  Ugh!

I have two big items going on. Well, maybe three.  I opened an etsy store, Beads on a Wire Designs.  I have bracelets, badge holders, and some resale yarn for sale there.

I have had one online job for transcribing, which I quit doing because I just can’t transcribe fast enough to make that work. I almost started another online job as an editor for non-english writers of technical papers, which I decided was not for me either.  So, now, I’ve applied for three actual, physical jobs that are local.  I decided the bills are just too much to not at least try and get a job.

Last of all, I have ambitions to start a craft magazine and I am putting together some projects and taking some pictures to put together the How-to’s for these crafts.  My intention for the magazine would be having a variety of crafts with the idea of introducing readers to new crafts. The pictures and projects would look clean and well-made, so the majority of projects will need to be easy to achieve well-made results.

Simple jewelry ideas would include the bracelets I have in my etsy shop and a simple earring made by wrapping wire around a pill bottle.

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I also want to make necklaces to hold badges that look more like  necklaces than a lanyard. The current badge holders I make just cover a badge reel, which is illustrated below with green piggy serving as a model.

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I’m still learning the best way to put these badges together, so some are a little wonky right now.

My daughter asked for a mega stitch afghan for Christmas.  So, that started me thinking about super size yarn knitting.

Let me make an aside comment here:  knitting a sweater or afghan is time consuming.  I don’t know how many hours are involved in making the average sweater, but in general its weeks if not months (I usually take several hours a week over the course of 6 months or more to make a sweater). Even knitting a hat or other small item takes hours of actual knitting. This makes knitting for money a questionable pursuit. But supersize knitting makes these things doable in a decent amount of time.

So, I made needles and I found yarn for a decent price (Premier Couture Jazz):

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As you can (maybe) see, the needles are made from PVC pipe.  The tips are made from heavy paper and paper stuffing (recycled junk mail)

I’m experimenting with Tunisian crochet and other yarns, Red Heart Boutique Irresistible. That’s my small iphone to show scale.  I’m thinking about a shawl, but that might be knit, since crochet uses so much yarn.

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Finally, I am looking at covering stools I bought at a thrift store with a knitted yarn cover. I bought upholstery foam and its been cut to fit the one stool.

So, okay, I guess that covers a lot.  I should have split this into many posts, but well this is what I can do right now.

Hopefully more to come, but I will likely start a separate website for the ‘magazine’ posts. Eventually, I’d like to do a print magazine, but right now I don’t have the capital to support that.

Let’s talk about Hotel rooms

On my recent 3 day trip to Colorado (and the corresponding 3 day trip back), I stayed in a lot of hotels; 5 to be exact.  By the time we got to hotel number 3, I had a mini list of what makes a good hotel.

First, you need to assume that the place is clean and nothing is broken.  That is sort of a given for me at the amount of money I am paying.  So here’s the list:

  • Electrical outlets.  We need a lot of them.  Particularly at the bedside since we might be reading ebooks before falling asleep.
  • Bigger vanity space. When you travel with family and it includes more than one adult or children above the age of say 10, you all have your own cosmetic bag or Dopp kit. A lot of hotels have a pretty small surface for all of that.
  • Bathroom fan.  Most bathrooms have a fan.  Lots of them are broken or just don’t work well.  With even 2 people, you can end trying to put on antiperspirant in a muggy bathroom.

On the trip back, we tried to stop at the Courtyard Marriott in Blue Spring, Missouri again, but they only had deluxe rooms left.  How sorry I am that I didn’t at least ask the price on that deluxe room.  They were busy and had a rowdy group in the lobby and we were tired, so we drove on to another hotel, in the rain.

In retrospect, the other hotel probably met the minimum requirement of clean.  But, it was a bit of a mess.  They had a dark decor, which felt to me like it might be hiding something.  The blue ceiling made the whole room seem dark.

 

Also, the bathroom counter was very low.  Okay, I’m about 5’3″ and my arms are typical length for my height.  This dress is shapeless (but very comfortable…) so you can’t see, but the counter is hitting me at about crotch height.  Very low!!  Yes, I did consider that maybe it was intended as a wheelchair access room.  But, actually, wheelchair counters are higher.  Plus, the hall getting to the bathroom was too narrow anyway.

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Additionally, this room was a little had worn.  The sheets had spots that were threadbare and the shade on the lamp in the corner was broken.

The whole thing looked better in the morning.  But still a inferior hotel especially considering it cost the same as the other Courtyard had less than a week earlier.  But then hotel prices are all about supply and demand.

Dropping the Last Child off

For those of you unfamiliar, its a 3 day drive from Maryland on the east coast to Colorado in the Mountainous west. You can do it in fewer days if you want to drive more than 8-9 hours a day since its about 25 hours total driving time alone

I drove out with my daughter and then my husband flew out to help me drive home.  It was a beautiful trip, but long, long, long.

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Both ways, we stopped in Kentucky to see my other daughter, Sam.  She is a Kindergarten Teacher in Kentucky and just started her first real job. I’ve been to Lexington several times and I’ve gotten to a point where I’m pretty comfortable there and I sort of know where things are. (Thank you to all those GPS systems/apps for making me dependent on you to get places!)

Beth is vegan and picked out our restaurants on the way out. We went to an excellent vegetarian restaurant the second night in St. Louis, Small Batch, St. Louis. Let me tell you, I love driving through cities as they unfold from the highway in daylight or, especially, at night with the lights on.  St. Louis, from the east is beautiful.  You get these glimpses of the Gateway Arch and then a more full view of it as you approach from the east side of the Mississippi river.

Now, its been a long time since I’ve gone anywhere without a hotel reservation. On the second night I pulled off the highway near Kansas City, Missouri and walked into a Courtyard Marriott. They had vacancies and it was a really nice place.  Okay, maybe I would have re-arranged a few things, but it was very nice.  We got up the next morning and picked up breakfast in a vegan bakery in Kansas city, Mud Pie Vegan Bakery and Coffee.  Who knew, but Kansas City is a hot bed of vegetarian and vegan options.  Anyway, the bakery was great and we got a no-bake cookie, a scone, and a fabulous s’mores mini bundt cake.

Okay, from then on the trip sucked.  We took I70 through Kansas and it was booorrring.  I’m sorry Kansas, but after you get about an hour west of Kansas city, there is nothing.  It’s miles and miles of fields, barns, and wind farms.  It was kind of brutal. However, we did see a wonderful rainbow on the way back.  Right before we entered the torrential rain zone that followed us for the rest of the night.

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When we crossed into Colorado on day 3, Beth was more than done.  It seemed like it was taking forever and she was losing her patience.  But, I began to notice these flowers at the side of the road.  They look like little sunflowers.

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We finally made it to Boulder after sunset on day 3.  We actually stayed in Louisville, Colorado, just southeast of Boulder.  We got up on move in day and went to Pearl street in Boulder.  Pearl street is a multi-block pedestrian only mall that includes centuries old buildings, the old courthouse, and street performers.  One night we were there they had a fire-eater perched on top of 4 or 5 chairs talking to a small crowd watching him.

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A few days later, I was on my way back.  It was about 3 hours to the Kansas border, where we got sent off the highway for some issue (never did find out what was wrong on the highway).  We found a small bar, but didn’t stop.  Did you know there is a small town at the border called Kanorado, Kansas? (The bar is in Burlington, Colorado, I think)

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So, as I said, Kansas is a boring drive and we ran into rain the second day.  But, we saw wind farms.windfarm croppedAnd some beautiful clouds.

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And soon, we were back home in Maryland.

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Okay, this is Sideling Hill in western Maryland, which is still like 90 minutes from home.  But, its all down hill from there.  So, we’re good.

 

 

Relative

I haven’t written in awhile.  My apologies.

About a month ago, my Father’s sister died; his only sibling.  She was the last of my blood relatives from that generation. You might think this seems an odd way to put it, until you get to this point. It feels like another level of being orphaned.

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Actually, the gut punch of being on the precipice of losing this generation came several years ago, when I saw my Aunt for the first time in many years.  My Aunt and Uncle traveled a lot, but I lived well outside their regular route.  We met at my sisters. My Aunt’s health had started to decline and she looked different.  Being the youngest of the cousins on both sides, I think, sometimes causes me to shirk larger responsibilities.  I know I have raised two children to college age, managed my house, had a job with large responsibilities, etc., but the thought of not having the safety net of a generation older than mine around seems scary.

The loss of another relative also brings up memories of my parents’ deaths. I have always seen my their deaths as falling on the opposite ends of the spectrum.  Dad had a heart attack at 66 years old; well before I had thought it necessary to prepare myself mentally for it. He lingered for a little more than a year while I learned to count on my sister for updates as my mother kept insisting he was getting better.  In hindsight, I know Mom was not only dealing with the truth in the limited way she could handle it, but also battling the onset of her dementia.

We then spent the next 15 years or so watching Mom deteriorate from Alzheimers and similar dementia causing diseases.  It’s a different kind of pain to watch a parent lose aspects of themselves and then basic abilities.  There were still glimmers of her personality that showed to the end.

This is just a brief summary of how I recall the whole thing, in summary. My sister experienced it differently.

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My Aunt loved cardinals and she collected mugs with their image.  I went on vacation right after the memorial service and their was a cardinal picture on the wall in my hotel room.  I think she was saying “Hi.”