mama whose curiosity knows no bounds

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Christmas flare

This Christmas break turns out to be mentally not so stressing, but physically very tough one.  Here’s the rant.

The week began awesome – I went to Cleveland to see my new rheumatologist, one of the best in the country. And he was pretty busy but aggressive in treatment. He made me stop taking methotrexate and switch to Cellcept. It hasn’t kicked in yet, but I am very hopeful about this switch. Another awesome thing that happened was he took my complaints of focus issue (I can’t sustain attention as I need to) seriously. To rule out CNS lupus, he ordered MRI. All other doctor dismissed this as “it’s just a menopause”. And he showed a proper respect to those in biomedical research fields. As a result, he treated me like a pro, not a whiner.  After all, I do research on type I diabetes, an autoimmune disease. And I have extensive background in DNA metabolism. Better yet, the MRI was done the same day. I fully expect that I had to go back there – 3.5 hour drive minimum, usually much longer in winter. But surprise! I would get it done all in one day! 

The problem is he virtually has no opening.  I was able to see him using an alternate route – I used a personal medical advocate that my employer provides as a part of benefit package. Without that advocate, I would never be able to see that famous doctor. And even the last appointment was with the resident fellow physician. So the doctor found opening in his time attending the same resident fellow, so he can see me again. So this is not an ideal start but I at least got to see the best rheumatologist in the country and he is treating me aggressively. He even suggested starting Benlysta, a biologic IV infusion medicine. Problem is, it is super expensive – $30k per year. I haven’t checked my prescription benefit, but the regular copay rule doesn’t apply to the biologics, that’s all I know. I have to investigate once the new year starts.

I was so excited that I didn’t feel hungry at all or tired at all. Bad sign. Because I will get the doubled to even tripled version of fatigue afterward. The next day, I had a bad nasal congestion and some cough. That sounded like a cold.  Another bad sign. Because infection is the most common trigger of my flare-up, followed by overexertion.

Still on Wednesday, Christmas Eve, my family had a cleaning day. My house was so cluttered and dirty beyond belief. I worked 4 hours nonstop, yet we could finish only two rooms.  I don’t want to count how many rooms I need to work…

Then Christmas Day came. Well, S was happy with the present – creme brûlée set with blow torch and ramekins. And potato chips. And she started baking Japanese style Christmas cake. On the other hand, I was miserable. I was fatigued as hell and every joint of my body hurt. It was clearly the flare up.  But because I started Cellcept, I was determined not to take prednisone this time.

The flare continued the following day. Except for a brief meeting to plan a fundraiser, I stayed in bed all day. I could hardly walk.

Now, Saturday morning, I feel a bit better, but not completely out of the wood yet. But today, I will see my son. No matter what. I just can’t live without seeing him.

Cellcept is supposed to be stronger than methotrexate, but it won’t reach full dose for another 10 days. Fortunately so far, I don’t have any serious side effect yet. I should thank that this med transition overlapped the winter break, I guess. You know, it’s better to look for a positive and that is mine for this flare.

B.

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Pant that fit and Craftsy sale

This Thanksgiving break, I’m making pants and top by Sandra Betzina based on her pant-fitting class.  I am AMAZED how the pant fit at the first muslin.  All I needed was to add a 1/4″ in the front princess seam to balance my prominent thigh.  Now I’m a firm believer of European style slopers, which she used to design her pants. Front crotch is much shorter and back crotch is much longer than usual American patterns and that really makes a difference.  I think I can finally move on to make my jeans, the reason for all these pattern making and fitting journey was for.

Now I’m waiting for online fabric sale to buy some ponte knit or wool crepe to actually make one!

Meanwhile, I’m working on her another pattern that featured a leggings and long knit top.  I’m now feel really comfortable using her pattern.  Her way of presentation in her class is kind of haphazard, but boy, it does do the job!

I can’t wait until tomorrow for the biggest sale of the year…I have a LOT in the wishlist….I’m eyeing on Grading class , industry sewing technique class , quilted bag class, and some cooking classes for my daughter…

Check it out from this link!

 

B.

One Day Craftsy Sale!

Well, I found another big deal opportunity at Craftsy I can’t resist sharing it.  I confess–I want to get further discount by making this post. But this is one day only.

 

Tailored Shirt class–this is what I’ve been waiting for it be on sale! Yay!

Perfect fitting class

Industry sewing skill class

One pattern many looks pants class–I already have this class and I enjoyed it!

my failed attempt to draft a pattern

I fell in love when I saw this coat on the cover of a tailoring textbook in Amazon.co.jp

So I asked my husband last summer to buy this book. I’ve always wanted a long coat. Especially the nasty winter last time. And longer version of this coat looked perfect.

This book comes with the actual size pattern. BUT I’m “super-sized” when Japanese pattern making is concerned.  My bust is 4″ bigger than the Large of the attached pattern.

However, kindly, this book comes with how to draft the pattern from scratch. First, we draft the “Bunka-style sloper”. 

In Japan, there are two major schools of pattern drafting -“Bunka-style” or “Dre-me (short for ‘dressmaking’)-style”. This book is published by the Bunka-style design. The sloper used is an old version, which use only bust and back length measurement to draft the sloper. The current version is a lot more complicated but that was not the version used in this book.

Ever a computer lover, and I had a good experience with some drawing software (Now defunct Micrografix Designer and Adobe illustrator), I wanted to draw on computer. But of course Adobe illustrator is way too expensive for just trying out drafting pattern. I found an iPad app, iDesign. This is a reasonably good app. It can have layers (big plus!), can export to jpeg or PDF or illustrator format. Although it didn’t have the sophistication of illustrator, it did the job. I successfully draw my sloper.

 

Then I had to to a rather complicated manipulation so I wanted to deal with front and back in separate file.

Only then I realized that iDesign’s maximum EXPORTABLE board size is smaller than the board I created. I think it’s a sort of bug that allowed me to create that big board I needed for sloper. And this app doesn’t allow me to hop between two separate files, copy and paste as we usually do on any apps on PC.  At this point, it really doesn’t make sense to keep going with this route. I might try getting the illustrator later on, though.

Then the next thing I tried was Microsoft Publisher, which I have used a lot for poster making. The problem with this is that I cannot tell where the printer splits the big drawing so I can place a registration marks for future matching. Besides, it doesn’t allow to make LAYERS. Layers are a MUST for any drawing software.

So until I learn the AutoCAD (I am lucky that I have access to free educational edition), I should stick with paper and pencil.  I have done that about 25 years ago, only my size has changed drastically.

I had a freezer paper taped to have enough space. Then I had to face the inevitable – my rulers are in INCHES, not in metric! Converting centimeters to inches are not too hard, thanks to the online unit converter. I also installed a fraction calculator app on my iPhone. This was great. The only problem is that I no longer have the ability to understand  22 175/192 inches is close enough in sixteenth (or eighth) of an inch.  I was very irritated that I don’t have that sense. It used to be automatic to find the nearest sixteenth. This is what ageing means. Sigh. Still, after a lots of hair-pulling, I managed to draw the real size sloper.

Since the actual drafting of the coat is in centimeters, I had a few options: buy all rulers in metric; or calculate very patiently; wait until I am fluent enough in AutoCAD.  I chose none. I chose BUYING A PATTERN. I need a coat for THIS winter. All forecasts say that this winter is as bad as the last one. I don’t want to survive in LL Bean parka, the warmest coat I have. It had been great until last, awful winter.

Thankfully, I found something that look good at Burda though it is tailored and therefore a bit difficult. Well, I’m ready for that challenge. I’ve taken enough Craftsy courses! And I can knit an accompanying infinit scarf.

I don’t know how Americans can design or draft a pattern. They must be a genius in fractions. Seriously, I hope Americans will adopt metric system soon that I can get all rulers in metric by default. I still hasn’t given up with that coat. So classy, isn’t it?  I might make in jacket length.

B.

 

 

What a difference a tiny Synthroid dose change makes!

For the last 6 months or so, maybe since menopause, I felt more tired.  I blamed it for my lupus and menopause or age or stress. There are so many things to blame in my case.

I also noticed that I was constipated more often than before.  Again, I blamed for lack of activity and lack of fiber.  So I added Benefiber  to my menu and they helped indeed. And also I was keenly aware of my weight gain.  I’ve gained about 15 pounds since January and regardless of my diet or exercise, I couldn’t lose any more than 2 pounds or so and it comes back right away when I eat a bit more sweets. I felt bloated and felt my belly distended.  When I saw my gynecologist in September, I asked about these problems.  She told me that that must be a GI problem and I should ask my primary care physician because she was an expert when it comes to diet.  Well, if a veganism preacher makes a doctor a GI expert, yes.  Since I started seeing her, she’s been urging me to be a vegan.  She even shared her own story that how dairy products caused her headache and giving up all animal products cleared her of all pain.  Well, that’s an anecdote that I hates to hear.  I would be more open if there is a large study that vegan diet helps with pain. I’m a happy pescatarian.

Still, I like her and see her because she doesn’t blame ME for my pain.  She rightfully blames my illness, lupus and fibromyalgia, not my situation (that I have an autistic son recently placed in a group home).  And she prescribes medications accordingly for my insomnia and pain while other doctors back off immediately from prescribing any scheduled medications.  In short, she makes me feel my pain legitimate and not faking.

Even my current rheumatologist backs off from pain medication and she always seems to be afraid. As a result, she blames ME for faking the pain, asking for pills. Hell, no.  I do have pain.  Anyway, when I saw her, she ordered TSH (thyroid stimulating hormone) test along with other basic blood tests.  Thank goodness.

After some fiasco, my PCP, who practice locally, was able to get the test result, and she herself called me that my TSH was normal.  “Normal” that I don’t trust.  I asked value. She said I had 3.0 or something close.  Lightbulb moment in my head.  NOW I KNEW IT. IT WAS THYROID!  I told her that my former endocrinologist recommended to keep my TSH level between 1 and 2 as a post-total thyroidectomy patient.  I’ve been stable for years at 137 micrograms of Synthroid but somehow, maybe menopause or diet or whatever, tipped off the balance to hypothyroid side.  I asked to increase the dosage.  And she agreed.

But there was a problem.  She ordered “levothyroxicine 150 mcg” that is a generic form of Synthroid, thyroid hormone replacement.  Since I had a horrible experience with generic levothyroxicine in the past, I always asked for Dispense As Written prescription when it comes to Synthroid and paid exorbitant copay for my choice.  My mail order company caught the difference.  And they canceled the order, despite I had my PCP send a corrected prescription.  After that, I had to call again my PCP to prescribe a new DAW prescription.  It went through.  But it took so much wait, about a week, to arrive.  So I did what I shouldn’t.  I chopped an old Synthroid tablet into about eight pieces and took one on top of my regular dose.  If I did perfectly, it should equate 153 mcg of Synthroid. Close enough for a week of waiting period.

WOW. My bowel is suddenly happily moving.  I feel more energy!   But apparently, this causes my joint pain worse.  I really don’t know why.

So the moral of the story is that when you have multiple conditions causing the same or similar symptoms, you have to have all of them checked!

For now, I’m waiting to see if my weight would decrease to past level. I think it should if I don’t eat too much and fortunately, I don’t have much change in appetite. And I’m positive I can exercise more with current energy level.  Until then, my plan to measure myself and make fitting form has to wait.

B.

Craftsy flash sale!

I found this Craftsy sale opportunities and couldn’t resist sharing it.

I’m gonna buy this jacket fitting class, as her Jacket making techniques class was awesome.

But you need to hurry as this sale ends on November 9 midnight.

Happy crafting and learning!

B.

Sabbath? no not really

For the last 3 months or so, I defined Sunday as my “rest day” as though it is a Sabbath. But in my case, it is merely “mental and physical health day”.

On Sunday I do nothing I have to do, I do something that I want to do –like blogging, or when I feel good enough, sewing. Most of the time, I spend the day in bed, just resting, doing nothing.

Now K is in group home, most Saturday I visit him, unless flare-up or other stuff interferes. Even if my husband drives for most of the time, and in cover myself with UPF50+ shawl, still 4 hours or ride is stressful to my body. That made it start my rest day habit. It allows me to recharge myself so I can go forward with the week ahead of me.

During weekdays I now have to wake up an hour earlier than before, thanks to S going to middle school that starts an hour early. I think this triggered the development of this habit.

Of course it needs cooperation of my family, and luckily, I have. I don’t cook – I often spend all day eating only cereals and my husband and my daughter enjoys meat dish – like bacon and spinach. And now S is old enough, I can ask her to prepare Monday’s lunch – or she will have “hot lunch” at the school – and she always opts for preparing one, even if that means that the lunch consists of three cookies, a cheese stick, and a cupful of fruit. Today she prepared cheese pasta with some vegetables and apparently ready to go.

I don’t do dishes – it’s always my husband’s job. I don’t do laundry, even if that means I have to do two loads on Monday.

This turns out to be quite a good arrangement.  Interestingly, no matter how much I sleep during Sunday, I can sleep through the night. So I just think I’m catching up, even though I usually sleep seven hours every day. I sometimes wish if I could do with less sleep but that was not the case. So I try to make the most out. 

I think many people with chronic illness can make use of this rest day.  It also helped me to say “no” on everything that happens on Sunday. 

When K was at home, Sunday used to be the toughest day of the week. He woke me up at around 8, asking for food. Then ask me to stay with everything he does, even though it means stimming and immerse himself in his world. Because I couldn’t take him to public place out of fear of meltdown, he demanded to go out for a ride. So I drove my neighbor, 30 minutes at a time, sometimes stopping by a gas station to buy his favorite junk food so he learns to stand in line and wait until I pay for the item before he opens the bag. We usually repeated it for 3-4 times a day. What a waste of gasoline! Then whenever he appears to enjoy himself, I sneaked out to do a week’s worth of grocery shopping. Prepare dinner and next days lunch, give K his sleep med, and had harder time making him fall asleep because I was too lazy to wake up as the same schedule.

As I write this, I wondered how I managed THAT.  Probably the sheer force of will/situation.  I realize how much I stressed myself. 

I’m finally learning how to rest myself. And I’m hoping that this will lead to better self for my family. But only they know if they are happier or not with me in bed all day.

B.

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