Saturday, April 21, 2018

Surprisingly Productive (Week 31 - 10th)

I did not have high hopes for school this week, yet have been refreshingly surprised.

Monday we decided to have our April Amber & Mom day. We shopped and shopped - well, we went to the shoe store for fun shopping and came out with a couple of pairs each; to Target for not fun but necessary items; and then to Kohl's because I had a 30% off and Kohl's cash burning a hole in my wallet. It was a bit chilly, but at least it didn't snow.

Tuesday. I was sure would be a bust and had mentally prepared for an unproductive day. Amber had spa appointments for her eyebrows and hair in the late morning, which always translates to lunch on the way home too. Amazingly, she was able to complete the last of her standardized testing Tuesday afternoon by struggling through the math portion of the Stanford 10 and sailing the OLSAT. Hooray for being finished with the testing.

The rest of the week has been pleasantly productive. Over the weekend, Amber had completed her astronomy homework and finished the final draft of her descriptive essay, so she was set for co-op without any last minute work. Oddly, her homework usually comes from the co-op classes I teach. And on that note, I was more than a little relieved that I had given my essay class the option of turning in their final drafts in class this week, instead of the day before classes. Prednisone has been hard to deal with at the higher dose and longer taper. I wasn't up for grading essays the day before co-op.

Working on her persuasive essay for co-op class 
Still, co-op went well again this week, nevertheless I'm excited to have only two more weeks left. Amber is dreading her summer time away from the busy activity of classes. She just gets another day of at-home lessons when co-op is finished, where I get s reprieve from lesson plans, teaching, and grading.

Amber got herself back on track for a full day of regular school lessons one day this week. Just the one, but our schedule isn't her fault. During that one day she wrote parts of her literature essay and completed all of the introductory assignments for her next novel. This was in addition to her regularly scheduled lessons. I was pleased with her dedication even if she wasn't thrilled with the length of the school day.

Yesterday was a medical day for Amber. Three consecutive appointments at Children's means I don't assign school before or after the appointments, considering  all are the type of appointments to drain her physically and mentally. We appreciate the ability to now schedule these all on the same day and only lose one day of school.

My to-do list for the weekend is extensive, but it's mainly all household items, grading essays, and planning science lab. The prednisone has kept me rather wired, so I'm ahead of where I normally would be this time in the week, but behind overall in household tasks for the season. Yesterday was inexplicably draining on me, so I started the weekend at an energy deficit that merely sleeping late could not fix.

In the evenings, we've started watching the older tv show Firefly as a family. Fred and I have seen it numerous times, given that we own the dvds. We always considered Amber too young for it, until suddenly she wasn't. We decided she was definitely still too young to see Serentity though, except when checking our copy of the movie I noticed it is rated PG-13. I could have sworn it was definitely an R rated movie. So now watching Serenity is up for consideration as Fred and I ponder how faulty our memory might be in respect to the movie. We did skip one episode of Firefly already, because ... Reavers. We gave Amber a nice summary of the plot and moved to the next episode on the disc.

Amber playing Horizon: Zero Dawn
I've also been playing Amber's PS4 game, Horizon: Zero Dawn when I'm too wired to sit still. We gave her a PS4 of her own at Christmas, and ended up purchasing the complete edition of the game again for her PS4 (curse you Sony and your weird account rules). Amber replayed the game on her PS4, and basically abandoned her saved game on the family PS4.  So... since Amber had completed the game, and the DLC, and had a fully loaded character all under my Playstation account, I made a New Game+ loadout to replay the game myself. One of the more recent game updates also added a story mode difficulty option, which I'm using. Amber laughs at how easy it is on story mode. Even her first time though she played on normal - not easy. Story mode makes the easy level look ridiculously hard. Amber has completed the whole gsme on both hard and very hard levels twice, and is gearing up to try ultra hard. I'm a wimp. I'm the person who actively seeks out cheat codes and wants the games super easy. I've always been like this.

My way of playing Horizon frustrates Amber.  She watches me play to give me hints, and help me with my inability to work the map. She is great at sneaking around to compete her tasks. I just bumble through in the brute force method. Because this is Amber's previous saved game character, it has every possible upgrade and piece of equipment. Nothing really can hurt my character configured this way and using the story mode, so it's very low stress. Unlike SimCity years ago. We were discussing this the other evening when Amber was airing her frustration at my methods. I explained that I was always the person using the cheat codes for infinite funds in SimCity, at which Fred chimes in, "And she turned off disasters because they are too stressful." Yep, that's me. I also enjoy cheat codes in the LEGO games. Amber doesn't get me. She likes the challenge, while I like the game play without the challenge. Life is challenging enough. I want easy games. And I'm getting old with hands that are not as quick as they once were.

Unfortunately, I won't have time for Horizon this weekend, or next week. I'm going to have to adult for a while now. At least we made it through the first of our ridiculously busy weeks with some school progress to show. That's a win for the good guys.

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Thursday, April 19, 2018

What's in a Name?

I'm slowly learning what it truly means to have Sjogren's. I've found after the relief of giving your illness a name comes the weariness of continuing to live with the disease. On one hand, it's fantastic to know doctors will no longer treat you like you're crazy for bringing up seemingly totally unrelated and random problems. No longer will doctors tell me my fatigue, pain, brain fog, joint swelling, etc are all from "getting older." I was beginning to wonder if this was some conspiracy that all 40+ people knew about, except me. "Let's not tell the younger people that your body falls apart at age 40, and let them think something is very wrong with them."

To all of you, this probably seems a normal progression: happy to know what is going on, even though the symptoms are still there. And that is a normal path, however in my mind I had dodged the worst.


Last summer I finally received a diagnosis from a wonderful rheumatologist who didn't think was was crazy, although the jury is still out about my primary doctor. It felt then, and still does some days, like he is humoring me. At any rate, he ran the initial screening tests that shockingly came back abnormal and he referred me to a rheumatologist - not the one I chose, but told me to see one.

After a rough summer in 2017 with a myriad of symptoms and then starting Plaquenil, which at the time felt worse than Sjogren's, I leveled out and adapted to the medication. I have no side effects from the Plaquenil anymore, and it clearly is having some positive effects:

  • The anemia is gone, mostly. One count is still low, but it's apparently stuck there. Nevertheless, I'm no longer so exhausted I can't even speak coherently. That was getting ridiculous. Words were hard.
  • My angular chelitis, that I'd had for YEARS, is completely gone! No thanks to my previous primary doctor who assured me it was due to "nighttime drool." I'm serious. The answers she gave me were quite often ridiculous. I should have known something was up besides drool, especially when prednisone for my back would temporarily heal it up the sores that nothing else could touch.
  • I'm not using eye drops daily anymore, nor do I feel like I have mighty boulders in my eyes. 

This was all thanks to the wonders of a DMARD and a diagnosis that allowed me to take the medication. It's not a magical, cure-all medication though. My skin is basically as dry as ever. I'm still living on the edge of exhaustion all the time, even if it beats the low-red-cell-count type of exhaustion. Apparently, I can expect this lovely autoimmune exhaustion to continue indefinitely. That's ok though. Exhaustion and I are old friends. I've been sick for years, I just never could get a doctor to take me seriously until last year.

My digestion has even been working better, or I've finally learned what not to eat with gastroparesis, rapid transit, and IBS-c (yes, I'm serious, all three at once). If food gets through my stomach, my intestines sail it through so fast that there is no stopping. Dump a few nutrients on the way by and go go go. Unless of course I've eaten one of the foods that triggers the IBS, then let's sit and cause a road block. That will be fun until it comes time for rapid transit again. Or maybe we can try a stomach roadblock and intestinal roadblock. Let's just feel crummy everywhere.

Well, you get the picture.  Except that scenario hasn't been happening as much lately. Everyone is playing nicer. Digestion has been happier overall; exhaustion has been manageable; mouth sores are a thing of the past; my brain even functions at a usable speed.

In early 2018, I finally felt like I had this Sjogren's thing down. I could do this, easy peasy. In my mind I'm thinking, "I'm all set up. I've got a diagnosis. I've got a medication that looks to be slowing the disease progression. Life is good."  I mean, I know it's an autoimmune connective tissue disease. I know it's just as harmful as lupus, et al.  But, but, I'm doing good. I feel better than in years, or at least in two years. Well, one caveat: exercise is not my friend anymore. I feel overwhelmingly sick after just a little workout. No worries though. I've read that happens with Sjogren's, and I only need to adjust my exercise routines to be shorter, less exuberant. The key is to keep moving. Again, I can do this.

This is where the cliche about pride going before a fall is fairly accurate.

It started in late February or early March with just my pinky fingers aching, or maybe even with my toes aching too. Honestly, it was hard to differentiate the aches from my peripheral neuropathy, which is doing significantly better too. Possibly it actually started back in late 2017 with the random bouts of interstitial cystitis, because that was certainly noticeable. However the IC was chalked up to more Sjogren's symptoms / complications that I didn't realize we're part of this gig. At that point I was still learning which symptoms went with Sjogren's and which symptoms required additional medical advice.

Then I was tired. Maybe more tired than normal tired. Or am I so accustomed to being tired that I can't even tell tired apart anymore? That's a valid concern. Oh, then my words started slowly vanishing again. leaving me not very intelligent sounding after 6-7pm. And let's be honest here. I don't get up until somewhere between 9-10 am on a daily basis. Getting up at or before 8 am is considered freakishly early for me.  And I'm not a late night person either. I simply require that much rest to function. Except, even that became not enough rest to function.

I have this everywhere around the house and in my purse. It's a skin saver for me.
Next I noticed my finger joints were really getting achy. This was definitely more than normal, probably. Again, the reminders from previous doctors about getting older reverberated in my head. Then I noticed how much more dry mouth had been, and I'm using the eye drops more frequently. Still so tired. I started ordering from Prime Pantry again so I could skip the local stores as often as possible. It takes so much energy.

Eventually my hands passed from aching to the "hey, these things really hurt most of the time." It hurt to use my hands, hurt to touch the finger joints, hurt to sit perfectly still. It encompassed every finger, and usually two joints per finger. My toes felt the same way. One day I noticed my fingers looked a bit pudgier than normal, maybe. Fred and Amber called it swollen, and could even point out the areas where my hands were this "swollen" thing. And, oh look, my toes are swollen too causing many of my cute shoes to fit oddly.

After being talked into messaging my rheumatologist through the patient portal (she really is fantastic about answering promptly), I was surprised to be called in immediately. She wanted to check my blood work again and take X-rays to look for the dreaded rheumatoid arthritis. That day I was prescribed a short four-day taper of prednisone to help with the joints. I'm a type 2 diabetic on a very low dose of medication, which is never enough to combat prednisone blood sugar highs. I tend to avoid prednisone like the plague and argue with my doctors about taking prednisone. In this case,  I figured this little taper would be fine, and it mostly was. After a week of waiting for results, I was given the all clear, or the RA clear. No way I'm clear of Sjogren's.

At first, I was happy to be finished with the prednisone and clear of the RA, because it meant this was all no big deal. Nothing new. Same old Sjogren's. Except, and you knew there was an except, right?  I was called back in for an anti inflammatory injection AND started on an 18-day taper of prednisone. I believe my reaction was "Say what now?"

Admittedly, the four-day wasn't terribly effective. It started helping the joint pain on day two, and pain was ramping back up before I even took the day four dose. Still, what? In my mind a longer taper of prednisone could not possibly have been necessary. I might easily agree to another six-day, but 18 days of prednisone? I'd never attempted anything of that nature.

Such a soothing feeling for my eyes.

What I didn't understand fully, was when the doctor says, "Your blood work and X-rays are clear for RA, it's a major Sjogren's flare," they mean to say "It's not a new disease, it's the same one being active and progressing inside your body. Welcome to autoimmune diseases."

I take my DMARD like a good little Sjogren's patient, and therefore was completely blindsided by this concept. I'm used to Amber's flares with her connective tissue disease and dysautonomia. We figure out the trigger and help her get back to base line. No long-term harm. I keep forgetting to add that little autoimmune part to my flares.

Apparently when I'm flaring my immune system is going crazy on various parts of my body. For some reason, this thought makes a line from Avengers: Age of Ultron continually pop into my head "Oh, I'm decrypting nuclear codes and you don't want me to." Instead, my rogue immune system is saying "I'm attacking vital organs and you don't want me to. Come and get me."

So now I'm taking prednisone to kick my immune system to the side for a while. To show it who's the boss. I'm pretty sure I'm not the boss, but someone besides my rogue immune system needs to be the boss. Which means I'm pretty sure every germ in the city will come winging my way. I am horrible at fighting off germs in the first place, and now I'm telling my immune system to step aside for a few days. Take a breather and think about its behavior.

Yes my blood sugar went crazy the first day. My primary doctor is not going to worry about highs to a certain point. I have to manage with my paultry daily pill and diet. I'm pretty sure I could eat nothing all day and drink just water and still hit 160 easily. That means this diet management plan isn't a great plan. It's maybe 12% of a decent plan. It... it's a bad plan. But randomly adjusting meds for prednisone doses that change every 3 days is also a bad plan. Which means I'm hungry and craving food because prednisone makes me crave carbs.  And it makes me hyper. So sleeping is off the table. Oh, but I was exhausted. Now I'm wired and exhausted, but much more productive.

And this is not even all the fun. The prednisone might not be enough to reset my immune system for a while and I don't know what triggered the flare. It could be the freaky weather. It could be diet, which was working so well in other respects. All I can do is wait and hope I don't need more prednisone or long term low doses, because that is a total diabetic nightmare and will require medication change. I cannot live on protein and lettuce, since the fruits / veggies that don't raise my blood sugar are the ones my intestines love to hate the most.

The end result is: I'm learning what it honestly means to have Sjogren's. The relief in having a name for all my odd symptoms is gone. I don't like this name. Though I am still grateful for the name and the treatment options it brings. I just wish Sjogren's only meant taking my Plaquenil twice a day and dealing with the tiredness.


Tuesday, April 17, 2018

{Review} HelpTeaching.com

Throughout our homeschooling years, one constant has remained: exploring the interests of my daughter using a multitude of resources. Now that Amber is in the last months of 10th grade, we find her focus to be narrowed and her goals specific to graduation. This means we no longer need a bevy of homeschooling curriculum to satiate her curiosity. Although when one of our long-time favorites, HelpTeaching.com, came up for review, we couldn't help but volunteer.

Having access to Help Teaching Pro allows Amber to explore the site lessons for reinforcement of her current school subjects as well as additional topics that may peak her interest. We were given a full year to use the Help Teaching Pro, which will take my student through the majority of her junior year!

Unexpected Homeschool: Review of HelpTeaching.com


HelpTeaching.com

HelpTeaching.com is an educational site unique in it's format and services. You would expect educational sites to have printables for a variety of subjects. However, HelpTeaching.com is so much more than a repository of printables.

Free Printable and Online Worksheets, Quizzes and Activities:
There are, of course, the obligatory printables that include worksheets, quizzes, and projects. These range from pre-school ability through twelfth grade and span the topics of:
  • English Language Arts
  • Math
  • Science
  • Social Studies
  • Seasonal / Holiday
  • Vocational Education
  • Arts & Music
  • Study Skills
  • Graphic Organizers
  • Physical Education
  • Life Skills

Unexpected Homeschool: Review of HelpTeaching.com


Online Lessons:
One of our favorite parts of HelpTeaching.com is the online lessons. The lessons are sorted both by grade level and topic, and cover English Language Arts, Science, Social Studies, and Math. Each of these major topics have an array of subtopics, which are also identified by grade. 

The lessons are a collection of resources, including video instruction, text, images, worksheets / tests to help your student with self directed learning. The videos are sourced from Khan Academy, Educator.com, Bozeman Science, or created specifically by the HelpTeaching.com team. Lessons sourced from outside of HelpTeaching.com are free to view, while other content is restricted to Help Teaching Pro members. 

The lessons can be assigned through the teacher account to any of their students - who do not an account. Then the teacher can track the students' progress which includes time spent, completion status, and scores on tests. 

Unexpected Homeschool: Review of HelpTeaching.com
A small selection of the lessons, which are easily assigned through the far right "assign" button.

Test Maker:
The Test Maker feature is a powerful option that allows you, as the teacher, to create your own tests, quizzes, and worksheets. You can make a fully custom test with all of your own questions, choose to select questions from a bank of questions already in HelpTeaching.com, or select from a list of existing tests / worksheets on your topic. It really depends on your available time and needs.

You are not limited to text only simple questions. Questions can contain images, or even be grouped together as in the case of questions that refer to a reading passage. Additionally, questions can be multiple choice, true / false, fill in the blank, or open ended. Math equations are a breeze to format as well. This truly is a fully customizable function.

Unexpected Homeschool: Review of HelpTeaching.com

After designing a test, it stays in your account indefinitely for repeated use. You simply need to assign it to a student and they have the option to print the test or take it online. Some portions of tests can be automatically graded too, while other portions will be sent on to the teacher for evaluation. The teacher retains full control of the scores though, and can mark an answer correct even if the automatic grader has it set to incorrect. This is an option that makes using the question bank even more effective, since the teacher has the power to alter answers if they do not agree with how the original writer answered the question.

Unexpected Homeschool: Review of HelpTeaching.com
I did make a test for Amber's essay writing course, but decided not to use it after seeing her most recent rough draft.

Worksheet Generator:
Another free portion of HelpTeaching.com is the printable math worksheet and game generator section. Although this is not something my high school daughter has used, I can see the value in this feature for younger children. It would even be great for homeschool co-op teachers who need some fun activities for their classes.

Unexpected Homeschool: Review of HelpTeaching.com


Help Teaching Pro:

HelpTeaching.com kindly provides a large portion of their features for free, still we always find ourselves grateful for our Help Teaching Pro access.  Both the Pro and free access allow for the creation of unlimited tests and worksheets, while only the Pro access allows for questions with images, saving your own created tests as PDFs, and use of pre-made premium content. Tests and worksheets in the free accounts can have a maximum of 10 questions, while Pro accounts are limited to 100 questions. Lastly, the Pro access also grants unlimited access to the Test Room to administer the online tests and lessons, while the free version does not have this access.


How We Use HelpTeaching.com

Unlike the previous time when we reviewed HelpTeaching.com, Amber did not have a course in need of supplementation. In fact, she is at the finish line with her science credits and math is never a good way for her to review a product. Additionally, we are not fans of printed worksheets, and while HelpTeaching.com has a fantastic assortment of worksheets, they are not the reason we enjoy the site.

Instead, I looked through the high school English Language Arts lessons to find topics I thought would interest Amber as well as further her knowledge. Lessons on hyperbole, villanelles, dirges, and other reading strategy items all met my criteria, and were easily scheduled for Amber to use. I threw in a lesson on email etiquette, simply because she does not email much except with her friends.

Unexpected Homeschool: Review of HelpTeaching.com
Assigned lessons. I can see her progress when clicking on the Actions buttons.
Having already used HelpTeaching.com regularly, Amber knew the drill when she received the email links to the lessons. However, I failed to note when I wanted her to do the lessons, so she waited rightly assuming I would instruct her on the proper timing. I was ever so thankful that she waited too, when I had yet another teacher sick day and needed pre-planned lessons of appropriate difficulty.

She worked in one room away from me, while I watched her progress through my iPad in a haze of exhaustion. Oddly enough, none of her previous ELA curricula have covered all of the topics I selected, which made those lessons a perfect complement to her current English course.

Future Use:

When needing a quick lesson with multiple components, I often find myself searching on HelpTeaching.com for a grade appropriate lesson. I'm not a big fan of tests and we don't use worksheets too terribly often. However, having lessons prepared with text, video, and review questions are a perfect fit for my needs. I'm sure we will continue to utilize HelpTeaching.com for the remainder of high school!

Unexpected Homeschool: Review of HelpTeaching.com


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Other members of the Homeschool Review Crew also reviewed HelpTeaching.com. Please follow the link in the graphic below to read their thoughts.


Help Teaching Pro. {HelpTeaching.com Reviews}



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