Pages

DRAFT TODAY, POST TOMORROW: Some posts may be in draft status until I (aka procrastinator extraordinaire) get around to posting them.



Thursday, March 31, 2011

Things to make so I can eat them (and food news)

I'm sure this will come as a surprise, but I love good food.  I love to eat yumminess.  Because of this, I kind of like to cook.  And I really kind of like to bake.  I'm not great at cooking or baking but I fake it pretty well.  Here are some things I would like to make VERY soon:
  • It's a Brooklyn cookie.  It has chocolate chips.  And molasses.  And chili powder.  Nuff said!
  • I have always wanted to do this and hear it is super easy, maybe even easy enough to get M to do it for me: BBQ Beer Can Chicken (video).
  • I love shake and bake chicken but don't like the ingredients in those packets.  Yummo to homemade, although I'll probably try it with panko instead for more crunch.
  • I love Peppermint Patties even more--you know the ones I'm talking about.  As I read this the first time, I thought (1) this would be great to make with kids, and (2) I don't use shortening anymore. Hmm. Then I started reading the comments and found it: substitute extra virgin coconut oil--I have that!  I would also use dark chocolate instead of semi-sweet.  Yummo.
  • I can't believe there are such things as Ice Cream Bread and Thin Mint Truffles.  All I can say is boo, friggin boo, too all who told me I did NOT need any Girl Scout cookies this year.  You know who you are and I do NOT forgive any of you.  You think you're helping me.  Go ahead and think that.  It's your own fault you aren't getting any truffles.  In case you missed it, boo.
That's 2 chicken recipes, one bread, and 3 desserts.  Add a salad and you have a perfect lunch for friends, if you ask me.  (At least one dessert should count as an appetizer, don't you think?!)  If you think that all of these recipes sound like something you "shouldn't" eat, here's your recommended reading: When Food Attacks!  I couldn't have said it any better--"As I always say, the only thing you should ever feel guilty about eating is babies."

If you are an emotional eater, here's the news to piss you off so you have a reason to make all the recipes above and eat them at one sitting.
  • Artificial food coloring may be linked to behavorial changes and health issues in children.  Products with artificial dyes include Jell-O, Lucky Charms, Minute Maid Lemonade, Cheetos, Froot Loops, Pop-Tarts, and Hostess Twinkies.  Most artificial colors are now made from petroleum products (they used to be made from coal tar), so while Americans drive hybrid vehicles to reduce reliance on foreign oil, they can eat it, literally.  Note the financial aspect: no patents on dyes, so no incentive for research; pediatric research expensive and difficult, so it doesn't happen; and who benefits from this news--a sentence at the very end, extolling the virtuous Whole Foods and Trader Joe's, who "refuse to sell foods with artificial coloring."  That is an interesting choice of words by the "journalist"--"refuse" is probably the most emotional way to describe that.  Whether this is a marketing ploy or not, I am glad to hear that Frito-Lay is going more natural since there is a lot of artificial coloring in chips.  They are taking the MSG and other artificial ingredients out of about 60 snacks.  I can eat Doritos again!  I think my hips are already protesting...
  • I already know that food inflation is being kept hidden in tinier bags, but just realized this is going to have an impact on lots of recipes.  I haven't made any of my "old" recipes recently, so I wonder how much of an issue I will run across.  Some people think, just don't used process food, but we're talking about things like canned vegetables and packaged pasta that have gone smaller for the same price.  I'm still annoyed that I can't get a 5 pound bag of sugar anywhere besides Fresh & Easy.
  • I'm always interested in the case against veganism, although I'm not sure this one would stand up to criticism.
  • I'm still interested in the raw milk movement and found an old post about milk for daredevils.  Hmm, not sure how I feel about that one.
  • There are 21 ingredients in McDonald's oatmeal!  Great oatmeal doesn't need more than 5 at most: oats, milk and/or water, dried fruit and/or nuts, and possibly a sweetener like honey, brown sugar, or molasses. Okay, maybe cinnamon too--it's good and good for you. If you eat a lot of oatmeal, consider making your own oatmeal packets (with cost analysis).
And, for your viewing amusement, rapping about dairy farming.

MS Awareness Month Finale

For National MS Week, the National MS Society (US) had a campaign to ask "what does MS mean to you?" branded as MS=, which included a Facebook page and a page on their website.  My "short" answer (for now--I think our answers change over time with our experiences) was:


MS= making difficult choices and learning to lean on loved ones.  There is no cure; there is no treatment that doesn't have horrible side effects. There is the love and support of my friends and family who don't define me by my disease but let me vent and discuss things when I need to talk.

The Wheelchair Kamikaze says MS = WMD.



------
Medical marijuana is legal in 15 states; four of them tax the sale of medical marijuana.  In Part 1 of this Dr. Oz Show featuring Montel Williams, Dr. Oz talks about the history of and debate around Medical Marijuana.  Even if you aren't a Dr. Oz fan, he has great visuals to explain how things work.  Montel's advocacy and legal troubles make my heart hurt for him.  In Part 2, he says he is not asking for anything special--he has a right to be pain free.  How can you argue with that?!  Frankly, I think the drug companies want us to take artificial chemicals that are KILLING US, and are helping the government keep a natural pain remedy away from the American people who need it.

Who do you believe in this debate about medical Marijuana?  I agree that it won't work for everyone, but no MS drug works for everyone (most have 33% efficacy, with efficacy rates increasing with the likelihood of a particular drug KILLING US.)  I agree with Dr. Oz that marijuana is addictive, (WHO CARES that it is addictive when you have chronic pain for the REST of your life?) but he forgets that all of the pain medications being forced down Montel's and other MS patients throats are also addictive, and often do NOT work.  See also: Why it's prescribed: Part 1 and Part 2.

In "Is it safe?" (or "Who should get it?"): Part 1, listen to the oncologist who has been prescribing it for 30 years as well as Montel's point at the very end about the lady who is against marijuana use, and in Part 2, her lame attempt at explaining away her conflict of interest.  There's a different standard in the US under the FDA than in Canada, the UK, and Portugal?  Part 2 also includes a list of "legal prescription drugs" used for pain, most of which are acknowledged as narcotics and highly addictive.

I am so tired of hearing that there has to be more research before proceeding.  We know there has been a 200 year history of marijuana use for pain, and less than a 30 year history of prohibition, so why don't we do what is done with other big-pharma drugs--let it go to the market and see what happens?  Keep in mind that many drugs are approved by the FDA for one purpose and then used for other purposes not approved by the FDA--they aren't even studied because there is no financial incentive at that point.  I am not saying that I would use it if it was available.  In fact, I don't think I COULD use it while I'm still working.  But I think there is something not right with this debate.

------
There are some things "known" about MS, but many more that aren't.  Here's a new insight into how MS develops (video, but the text below is the transcript of the video) that could lead to research in a different direction.  I found this interesting because I somewhat agree with an opinion I ran across that stated, maybe there won't be a CURE for MS--it may be like a stroke, where prevention is more important than a cure.  If that is true, a better understanding of the very early processes will give us better ways to prevent MS.


------
There were a LOT of links about MS and CCSVI.  Here's an interesting snippet:

"many critics of Dr Zamboni’s CCSVI theory and treatment are involved in research studies relating to such drug related therapies for MS. What is also strange is that most research studies for Multiple Sclerosis seem to be concentrated towards slowing down and controlling the MS, making the disease more bearable, more manageable and the symptoms milder instead of preventing or curing it altogether.  The very powerful pharmaceutical industry does business of over $8 billion per year, selling MS drugs that control the disease but not cure it."

------
I saw this on Facebook:

*10 THINGS YOU (DO NOT) SAY TO SOMEONE WHO HAS MULTIPLE SCLEROSIS*

10. MUST BE NICE TO SLEEP ALL DAY
9. YOU'RE LUCKY YOU DON'T HAVE TO WORK
8. I CAN RELATE
7. JUST TAKE SOMETHING
6. JUST TRY HARDER
5. JUST BE POSITIVE
4. YOU JUST WANT ATTENTION
3. IT'S ALL IN YOUR HEAD
2. IT COULD BE WORSE
1. BUT YOU LOOK (GOOD)

I still work and don't get to sleep any more than usual most of the time, but I have heard #8 (really, you "know how I feel"?  Unless you have MS, you know that I now know you are an idiot or insensitive or completely oblivious), #5 (um thanks for telling an eternal optimist to grin and bear it.), #2 (see also: eternal optimist.  But, in all cases where I've been told this, I want to say (but don't by some miracle of the tact-god, it's worse than your shit, so shut the fuck up), and #1 (of course I do! haha).

-----
I just paid $284 for MY portion of the cost of my Provigil (no generic available) and then, after getting home, realized it wasn't even the 90 count I had before--it was 15 (insert many, many bad words here) pills.  I need to do some homework to find out if I can get a larger number and/or get a discount by ordering online.  I didn't have anything else to do....  Like reading this about the rising price of disease modifying drugs.  I guess the good news is that this unbelievable price gouging of the MS community pushes more of us into drug trials, even if we really don't want to be guinea pigs.

------
In the Age of Endarkment, the author states:


It takes strength to be ill, the ancient Chinese used to say. The more love, compassion, wisdom and calm you store up, the more capable you’ll be of facing up to hatred, disappointment, envy, fear and disturbance.


I'll say it takes strength to be ill!  I believe that MS fatigue is at least partially caused by the underlying pain our bodies are in all the time.  When I have a really bad pain day, I'm just wiped out mentally as well as physically.



-----
Don't I have too much to do to do nothing?

...make it a point to "do nothing" for just one day in your life, once a month at least. Sit silent in a room, or outside, under a tree, and be very quiet.  Very languid. Feel free to be lazy. Without guilt touching you, even with a barge pole. Roll on the grass; or stretch out, let the morning sun kiss your eyelids as you slip into nothingness. Or just watch the squirrels run up the tree trunk, awe-struck like a child of four.  "Stand and stare" is not a cliché. It is awe aerobics for the soul.

Wednesday, March 30, 2011

Agility Class

We did 3 exercises, and I was paired with 2 other 20' dogs so I could do each exercise with Cassi, then one of the other dogs went, then Teka, then the other dog, then Cassi, and so on.

The first exercise was 8 jumps, set up in two rows.  Instead of going straight over the 4 in a row, we did front crosses in between jumps so that they did one on the right, then the next on the left, then the next on the right, and the next on the left.  Then we turned around and let them go over the four in a row to end where they started.  A fun exercise but so hard.  The instructors (and some others) have just gone to the Steve Moon seminar, so they were trying to retrain us to call the dog's name instead of saying "here" on our front crosses.  This was pretty difficult for me since I've been trained for years to NOT say the name without a command.

Next we worked on a sequence that was confusing in person, so this should be easy to follow.  :)  There was a curved tunnel, and to the right back side, but out to the right more, was a jump--that was the start and went into the end of the tunnel.  There was a jump to the left  of the tunnel and three jumps (like a serpentine) in front of the tunnel.  So coming out of the other end of the tunnel, we went over the jump, wrapping back to the serpentine.  On the last jump, the dogs were heading away from the handler, and they had to wrap to jump back over that jump, but not doing the serpentine again, rather going to the jump on the left of the tunnel, then wrapping back into the tunnel.  Coming out of the tunnel, they are supposed to go in between the middle jumps, over a broad jump.  That was super difficult for all of us.  Cassi had more trouble with it than Teka, but those jumps are pretty distracting!

Last, we had a sequence that had a jump, teeter, and two jumps lined up in the middle, with two curved  tunnels on the right side (before and after the teeter) and a curved tunnel on the left side.  The sequence was the jump, right tunnel, teeter, right far tunnel, farthest jump, wrap to jump, left tunnel, beginning jump.  (was there another jump between the first/last jump and the teeter?)  We did the sequence with these instructions: the first time through, stay on the right side of the teeter all the way through the course and the second time, stay on the left side throughout.  A very fun exercise but hardest with Teka getting her to go into the tunnel on the other side of where I'm standing.  Cassi did GREAT teeters.  I think Teka needs a little more practice on wrap.  I would like to invest in a bunch of jumps this summer so I can work on this at home.

Tuesday, March 29, 2011

Weave class

Teka had 3 exercises tonight.  First was a longer sequence.  We started at a U-shaped tunnel into a jump to a double jump to 2 sets of 6 weaves.  With a front cross, we went left to a jump, into another U shaped tunnel, back into weaves to the double jump, front cross to the tire jump (parallel to the weaves).  Teka did have some trouble on the weave entry from the second tunnel--it was hard to see the entry from her angle.  So R moved them a little to help out.

Next, we had a jump leading to 3 sets of 4 weaves, with me on the right side.  After the weaves, she was supposed to go into a tunnel (but taking the side to the right--the handler side), which I was able to get, but R corrected my handling.  I was leaning down too much so she reminded me to "trust" Teka to do it herself.  Oh, well, I'm working on it but Teka has needed "hand holding" for so long that it's hard to break the habit.  Coming back out of the tunnel, she went back through the weaves (perfectly).

Last we had the "round the world" weave entry exercise, starting with a jump to a broad jump and then into the 6 pole weaves.  The weaves were moved into 4 positions, from a pretty straight entry, all the way to a 90 degree entry, entering on the right end and weaving to the left.  Teka did great on the broad jump--we started with a quick refresher on it before going into the actual exercise.  The 90 degree entry was very difficult for her but she got it.

Contact 301

After D paired everyone, Cassi and I were left to work on our own, but not on the exercises everyone else was doing.  I felt a little remedial.  Okay, a lot remedial.  And a little annoyed that Cassi wouldn't get to work on the teeter.  That's the reason I started taking this class.

D walked me through the exercises to do with Cassi.  We worked on the clicker board first, and she had a little trouble getting started, but once she got it, she got it.  Then we used the large contact box, and worked up to a running contact.

Then we worked on the contact board.  *sigh*  We've been working on this for so long and still, Cassi just doesn't get it.  So after I struggled for a bit, D came over to help and had the same issues with Spazmatastic Cassi.  She doesn't seem to know that she has back feet, so she gets her front feet on and then swings her butt around instead of going all the way on.  So we put the contact board away and she brought out one of these:
And it worked!  She did awesome.  What fun.  We only have one more class before I take a break to get the house stuff done.  This is something I could work on at home when my other class is done.

Another new eye doctor

I went for my follow-up appointment and found out the doctor I saw last week was just filling in for the doctor at this location.  He didn't check my eyes but he was not pleased that the other doctor gave me a regular contact instead of a torric lens for my left eye.  I explained my previous experience (last year) and we discussed trying some different brands to find one that works.  He asked about my vision with the trial regular lens and I let him know that I had some blurriness and had just noticed some double vision at farther distances (the traffic light in particular).  He is going to change my right lens to the same brand as the torric lens and they will be monthly disposables instead of 2 week lenses.  They had to order them, so I will be going back a couple more times.

I am seriously considering a Lasik evaluation.

Thursday, March 24, 2011

Not a lottery winner

I got a call from the endocrinologist's office, letting me know that they got the lab results from Hope Research.  The Hope labs were taken since the last endocrinologist labs, so they were concerned and requested that I get labs done again.  They are sending a lab order so I can go in; then I can go see the endocrinologist's office again.

In related news, one of my MS friends had the CCSVI treatment done recently.  I have contacted her to get more information on her progress and who to contact for testing at AZ Heart Hospital.  My husband and I have discussed it and feel that I should at least get tested before deciding if I will continue in the Alemtuzamab trial.  I am enrolled through May, but I can continue in the extension trial for another 2 years.  If I continue, I cannot have any alternate MS treatments such as CCSVI treatment.  I don't want to seem desperate or cynical, but I'm pretty angry that my neurologist acts like I won the fucking lottery--he has four patients on Alemtuzamab and 25% are expected to experience thyroid issues, and I'm the one.  Whoo, fucking, hoo, and yay for me, and stuff.  He also, in my opinion, completely disregards any complaints I have and acts like I haven't had any more MS symptoms since being in the trial, that they are "residual" to previous exacerbations.  It's not worth changing doctors--I've been around enough of them now to know that he's very similar to the rest.  They are trying but they have biases and can't be objective.  I understand but I'm still pissed and know that I have to be my own advocate and take my future into my own hands.

This is MS Awareness Month; last week was MS Awareness Week according to the National MS Society (US).  I have been reading and viewing a lot of MS news and views and some of it originates in other countries.  There is research being done; maybe there is progress being made.  But there is so much unknown and there are so many people with MS who feel they are not being HEARD.  The doctors have a list of symptoms they expect, and those are MS symptoms.  The other symptoms we complain about are not MS symptoms because no one else has them.  Except that some one else DOES have them--we're online and we find out the TRUTH--we're not alone in any of these odd, annoying, sometimes painful symptoms.

It would be so nice to have the luxury of not thinking about this or making these decisions.

Here are 10 links for MS Awareness:

This is war!

Numb 

Beautiful Day 

Faces of MS

Liberation Treatment (may have posted previously)

Making Medical History

Death caused by MS (Canadian MS blog)

What MS feels like (differs by MS patient)

The History of MS (Facebook photos of text)

I say I’m fine because I wish I was, because I want to be, I want to believe that someday I can be.

Wednesday, March 23, 2011

Agility class

Tonight was course night.  We had fun and ran twice with each dog.  A lot was similar to the last course but mixed up.  Off to bed...

Survey says...

The monthly monitoring survey is complete with nothing abnormal to report.

Tuesday, March 22, 2011

Weave 201B

We did a mini course, which Teka did great on, lots of energy.  We did the reverse of the previous round the clock entry exercise, going into the weaves straight and from the side.  She didn't even care that I crossed behind her some of the time.

Contact 301

Cassi started on the teeter, set very low, with phone books under the end.  The phone books were removed fairly quickly as she was not going on straight.  She really picked up some speed and drive with my partner S wiggling the treat pouch at the end.  D said we can go up from the lowest setting by a hole next week.

We did the A-frame at "black plus 10" and she was flying over the top.  S let me know that Cassi was getting close to missing her up and down contacts.  D said we might add a hoop if she doesn't self-correct as we increase the height.

The rest of the class had a table exercise but we aren't ready, so we did the contact board.  As usual, D had to come help us.  She told me to click for any back foot, even if the front feet are off the board; that can be corrected by "pushing" her back by treating on the front of the board.  We are going to start a game at home to "back up" without telling her (as I usually do), just clicking when she steps back, and keeping my hand low.  If she sits (which she did a LOT) then just say "come" and try again.

Triple update

First, I received a message.  Cassi's test came back as a 1 pattern, which is good.  We will go back in 3 months for a follow up visit.

Second, N at Hope Research called to tell me that Dr. G reviewed my last blood labs and was concerned about the thyroid results, recommending I see my primary doctor.  This call was confusing for me.  Dr. G told me this, what--7 months ago.  And I've been to the endocrinologist, which I discussed with him at our last visit.  Anyway, N said they would get the results over to the endocrinologist to see if they want to adjust my medication.  I was just in to the endocrinologist to review the lab results I had then, so this is all a little frustrating.

Third, I went to a new eye doctor.  Last year, I accidentally changed doctors and wasn't all that pleased with the process.  I ultimately ended up with the same prescription as I started with although I tried a half dozen different lenses, including the torric lense for my left eye astigmaticism that caused me to "cry" for the entire 2 days I wore it.  But here I am, on the other side of town, looking for a new eye doctor.

I arrived early and, after the initial checking in and paperwork, waited until a half hour after my appointment time.  As I was thinking about how long I wanted to wait, I was ushered in to have the technician start the eye tests.  Then I saw the doctor and he ran additional tests.   And he tells me I have scarring on my left cornea; he says it is not consistent with optic neuritis and I recall having a scratch about 15 years ago but I wasn't aware of this scarring.  This scarring would cause the imperfect vision I have in the left eye, which is not correctable.  He thought that it would be better for my eye health to wear glasses rather than contacts, but contacts are fine if I don't sleep in them (which I don't).

We talked about the lenses I've been wearing, which I'm pretty sure are Acuvue.  He says I'm -550 in my right eye; I say that sounds right, but I've been wearing the same prescription in both eyes.  And then he springs it on me.  He thinks -450 is as high as I should go in the left eye, definitely not -550.  Um, what?!  Since the vision issue is not correctable, especially without a torric lense to correct the astigmaticism, he thinks this is the right way to proceed.  I have my trial lenses and will go back next week.

Tuesday, March 15, 2011

The Art of Racing in the Rain (a novel)

Then, late in the day on Saturday at Robbins Butte, two ladies were talking about how sick they've been.  I mentally panicked and then thought hopefully, I managed to avoid getting this bug when it went around my office, so I'll be fine.  Sunday, I thought my sneezing and drippy nose might be caused by allergies from being out in the dust at Robbins Butte.  But no--I stayed home with a cold yesterday and I'm home sick again today.

While we were out on Saturday, I started reading a book I picked up at the library's used book sale.  After sleeping most of the day yesterday, I finished reading The Art of Racing in the Rain by Garth Stein today.  A quick read, it is written from a dog's perspective.  I may be overly emotional because I'm sick (and stressed out since I can't DO anything on my very lengthy to-do list), but I found the book to be sweet and a little funny as well as teary-eye inducing.

Enzo talks about his life with race car driver Denny.  A canine who is ready to be human in his next life, he shares the events of their lives (amazing for a canine).  I'm not a race fan myself, but racing teaches Enzo:

That which you manifest is before you. 

His tale is an observation of humanity, at alternate moments inspiring and gut-wrenching.  Read it now: it appears there will be a movie version released in 2012.

Saturday, March 12, 2011

RSVC Hunt Training

We spent most of the day at Robbins Butte for a little hunting training.  The girls haven't been out for quite a while.  A friend of M's came out with his brother to observe and take photos.  I'll add a couple if he sends them to me.

Thursday, March 10, 2011

Cassi meets Dr. Hershey

It was a long visit for a little information, but the vet was very kind and informative.  She sat on the floor with Cassi and felt her lymph nodes.  Her examination did not find anything of concern.  From the notes she gave me:

A c-kit immumohistochemistry was requested to determine whether Cassi's mast cell tumor is expected to behave more aggressively. A c-kit staining pattern is reported as a I, II, or III.  The staining pattern 1 have a great long term prognosis with surgical removal and no additional therapy.  Staining patterns 2 and 3 have a 25% and 40% chance, respectively, of recurrence and/or metastases and additional therapy is warranted.

The lab has Cassi's mast cell tumor and I should have the results in about two weeks.

Wednesday, March 9, 2011

Agility Class

My DH brought the dogs to class for me, so he was able to hold onto the dog I wasn't working with while I worked with the other.  Before class, Teka tried to play with a passing dog, and it growled at Cassi.  Hmm.  It was course night, and I was able to run twice with each dog.

The course kind of snaked back and forth, starting on the left front and ending on the right front.  It started with a U shaped tunnel to a dog walk, 45 degree right turn to a jump, then more than a 45 degree right turn onto the teeter.  From there was a two jump "serpentine" with the third serpentine being the weave entry.  It was pretty difficult.  Coming out of the weaves (long way between the start and finish of the course) was a front cross U turn to the tire, parallel with a jump (so the dog is doing a U turn from the tire to the jump), then a front or rear cross for 3 jumps heading to the back of the course but not lined up.  The last one requires an "out" toward the right, but then a sharp left turn to the table.  Off the table is a jump to the back, a right turn to a chute going right, out to a jump heading back to the front, over the A-frame to a jump placed a little to the right, out to the left to the left end of a tunnel.

Teka was pumped up and did pretty well with her speed.  We missed the weave entry but she did them quickly.  The jumps leading to the table were difficult as she kept looking back at me so I had to take her all the way over rather than the desired way of sending and calling to the table.  She went through the wrong end of the last tunnel, and the second time we ran, she came out and ended up in the U, looking over at me, so she jumped it!

Cassi did the teeter really well the first time, but the second time she jumped or fell of the side, so I took her back to do it again (slooowly).  I got her into the weaves well once but not the other time.  She paused each time on the tire--but the most on the first time (and I put her through an extra time).  For some reason, she paused at the table but then was fine.  And I turned toward the A-frame too early so she didn't go in the chute on one run.  The next one, she came out of the chute really wide because the Mr. was distracting her.  (He tried with Teka's second run but she ignored him--she was glued to me.  *sigh*  I'm not sure I'm ever going to get distance with her.)  Cassi's second run, we even got the correct side of the last tunnel--I did it as a rear cross behind the jump and pulled her to the left.

Trial Update

I met A at Sonora for my blood draw and she said that she brought everything so I wouldn't have to go to Hope at the end.  The blood draw was easy peasy.  While we were there, A took my pulse and blood pressure.  At the doctor's office, I filled out the questions, got my temperature taken, and filled my cup.

I saw Dr. M and he did the usual tests.  On the eye chart, I was able--barely--to read the bottom line with my right eye; I had to go two lines up for the left eye.  The walking and balance tests seemed the same.  I'm not sure that my calves are hanging off the end of the table when I do my laying down tests, but today they were and I had a lot of trouble with the leg-strength tests, pushing up or down against his hands.  I felt that I was weak in my back, which I noticed when laying that way.  He mentioned that the weakness he saw was not consistent with MS weakness, so I did explain that I have had fusion in my back due to surgeries.  During the sitting tests, it seemed that I had some trouble with the "toe" tests, where he asks me to pull up or pull down, and when he tests when I feel a vibration stop.  Of course, he doesn't report anything to me, but he kind of retests.

Next, I saw Dr. G, who explained my situation to the medical student in attendance.  The Dr. always seems so confident that I don't have progression and I'm doing so well, but I still don't understand how I haven't had progression when I had that numbness last May.  The random stuff doesn't count, because it doesn't last more than 24 hours or isn't new.  Whatever.  I agree that my case is very mild, but I find it hard to act like it doesn't affect me.  We also discussed my endocronologist (who he knows, but I only saw her the first visit--I see someone on her staff now.)  He said there is a 25% chance of thyroid issues with this treatment, so of his 4 patients, I'm the one (only one) with any thyroid reaction.  He went on to discuss the extension trial, which he recommends for me.  He believes I would have another MRI at the start of the extension, but he didn't seem to know much yet, so I didn't not ask more.

When we were done, I discussed the extension with A and she explained what she knew of the extension protocol.  All the trial participants will be on Alemtuzamab.  Since the control group was on Rebif instead, everyone in the trial gets the same infusions again--I will get the 5 day infusion this year and the 3 day next year.  She recommends everyone participates in the extension, as it seems we are all doing well and it's free medication.  She did think that there would be MRIs around the time of each infusion.  All the monthly testing would continue, but the quarterly would be somewhat different because Dr. M will know during the "open trial" that we're all on Alemtuzamab.

As my thyroid issues appear to be caused by the trial drug, and my Vitamin D issues are likely related to my MS, I want to note a change in my overall health.  I feel very good (for me) today.  I haven't had any serious (back/butt) pain days for over a month, with the exception of the precursor to some terrible cramps when I started my period.  I'm pretty sure my periods are 3 weeks apart now.

I'm seeing numbers on the scale I haven't seen for a while.  This morning: 182.  I'm not sure if six months of Synthroid and Vitamin D are kicking in or if it's something else, but I've lost about 10 pounds over the last month or two.  I have not significantly made any changes to my exercise or diet.  I still try, but not always, to eat pretty well and get some "loving movement" into my day.  I try to eat some salad and fruit every day, but I don't always.  I have started drinking an almost-daily coffee or coffee beverage to help things move along, and wonder if that could be helping, but I started seeing the decrease before I really committed to this coffee regime.  I will continue to (somewhat casually) monitor the situation!

Tuesday, March 8, 2011

Weave 201C

Quick notes:

  • Round the world (the right half): 4 jumps as entry to weave-o-matic 6 poles
  • 12 pole weaves with toy/dog torture: used the frisbee filled with treats and she went to it the first time but stayed in the weaves after that.  She didn't care about the other dog, but paused when I moved away.
  • Handling exercise: jump 45 degree left to 12 pole weave-omatic, jump, front cross to tunnel (to left), back over jump back into weaves where I don't go to end but support her U-turn into chute, blind cross and guide into far side of tunnel (top of C shape).

Contact 301

Quick notes:

  • Dog walk: low, send, recall, run with--she's doing VERY good
  • Teeter: low with 4 phone books under high end, letting her bang (about my hand length).  We can practice at home if the bang is equal but would need some kind of "sawhorses" under the ends.  Next time we decrease the books.  Make sure the treat is low on the end.
  • A-frame on black plus 8: send, recall, run with.  She did great!
  • Clicker board, trying to send, recall, run with--start close and move farther, throwing treat down on board or mat.
  • Contact board on phone books: stand behind and put her through my legs, treating in front with all four feet on and going on straight.

Monday, March 7, 2011

Old cats, new vet

I kept moving the "find vet for cats" down on my to-do list.  At M's insistence that I get Jill's face lump looked at, I went online and looked for vets, taking out the ones I already heard questionable commentary about.  All the recommendations I have received so far were too far for the cats--they get so stressed out about travel.  I found two that were the same distance.  The one to the east had good online reviews unless the "other" doctor was involved.  The one to the southwest did not have much online feedback but appears to meet my criteria.  So we're off to Buckeye....

We discussed Jill's lump and the vet determined it was most likely a cyst.  We could take it off surgically and biopsy it or we could drain it and test the fluid.  She warned that it could come back and we have no idea how long it might be before that happens.  So that is the option I chose, and the fluid did not have any bacteria or other obvious issues.

She also pointed out that Jill is having some dental issues that could be causing her pain.  There is red around the lower gums and major tartar buildup on those teeth.  But a dental would require putting her under (and it's expensive), so I'm not sure that's a great option.  I am concerned that she is (may be) in pain--if her quality of life sucks while she's making my life suck, then what's the point....  (In case you are new here--Jill uses puppy pads because she refuses to use the litter box.  And she has nearly constant diarrhea and ear infections.)

The vet wanted to do senior lab panels for both cats, but looking at the price (after a $45 office visit per cat), I couldn't see spending the money.  We discussed Kachina's health issues (thyroid treatment, and diet for kidney function) and the vet pushed for a kidney panel, less than half the price of the senior panel.  I agreed, and the vet also pulled the records from Ark (which I thought they were going to do before the appointment.)

The vet called me to inform me that Kachina's kidney function had not changed since her last labs in June--it is still mild.  However, the two liver enzymes they test for in the kidney panel had come back elevated, at the high end of normal.  At the last test, it was much lower.  The vet wants Kachina to have more extensive testing--I am reluctant due to both price and effectiveness.  If the testing shows what the vet thinks it will (and maybe if it doesn't), an abdominal ultrasound will be recommended.  (ka-ching)

In addition, she prescribed an antioxidant for liver function; the office is sending some information to me about the medication.  I would need to give it to her twice a day, an hour before she eats.  I could start at once day but sounds like it would end up at twice a day anyway.

Sunday, March 6, 2011

What would a Southern Baptist do?

As a Southern Baptist, I was not that familiar with Lent until my best friend discussed it with me.  C was raised Catholic; she showed me the other books of the bible that weren't in my King James Version and explained Lent to me.  She gave up things like donuts or sweets or candy each year until Easter.  So I started to do the same.  I remember my friend C telling me once that Lent wasn't about giving something up so everyone else could see it, but for yourself. (I'm paraphrasing; I hope I got it right.)  After we lost touch, I still did something for Lent each year.  A few years ago, I gave up soda and never went back.  I gave up chocolate for Lent one year, but that will never be a permanent lifestyle change!

The other day, when I came across the Dirty Shame blog, the first post did not catch my attention once I got past the title.  But directly below it was this story about a Southern Baptist learning about Lent.

It was sorta like 40 days of hearing Jesus say 'look, numbnuts, I lent you my blood on the cross, what have you done for me lately?' 

It was sorta like his friends were having a 40 day menstrualpalooza, he thought.

...the real question was - what would a Baptist, from the South, do?

His reference to the old rugged cross (yes, you have to read the whole thing, I'm not going to quote everything for you!) made me think of my favorite hymn.  Many years ago, I bought a hymnal at a music store so that I could learn to play it on the piano.  The piano I haven't played in a long time.  I haven't even had it tuned since we moved.  WTF is wrong with me?  Yes, I'm busy, don't always feel well, blah, blah, blah.  So I am going to call the tuner.  And then I will try to (re-)learn "The Old Rugged Cross" by Easter.  Not to play for anyone else, but just for me.

Saturday, March 5, 2011

Fiesta Cluster AKC Agility Trial

We drove across town (after a detour off the 101) to Westworld, where we encountered a stream of idiots who work there.  First was the guy who took our money but couldn't tell us how to get to the agility unloading zone--so he sent us straight ahead into the main (east) parking.  Then the guy at main parking who obviously had never heard the words "agility" or "unloading zone."  Then the guy near the RV parking who was just a jerk--since he did not know what we were asking, he was rude.  So we parked in the vendor/dog show unloading zone, walked across the whole dog show to the agility area, and found the agility unloading zone.  I asked the guy monitoring the area how we could get there and had the most annoying, circular conversation of  the day.  We found out that we should not have entered the main parking but gone down the street to the west entrance, which can really only be accessed by exiting the 101 from the south (rather than the north as we arrived).  We pulled the truck around and unloaded; M took the truck back to the main parking.

Cassi ran first in Open Standard.  She was doing pretty well until I sent her into the other end of a tunnel she had already gone through.  I'm not sure why she hesitated, but I wasn't expecting it and she pulled her out, getting a refusal.  We continued on, and she did a really great A-frame.  Coming off the table, she went over a jump and then slid and face-planted on the grass when she had to turn back towards me.  She did a good teeter.  Then she paused in front of the tire (like she does), looked at me and moved to the side, getting another refusal.  We finished well enough, but she did not get a Q (qualifying run).

My walk-throughs for Cassi's Excellent Jumpers with Weaves course and Teka's Novice Standard course were at the same time and I got very nervous about my impending conflict.  I was getting hot by then too, not helped by running between two rings and trying to figure out which dog would go first.  I'm not sure if it was my stress or the heat or if she just wasn't feeling well, but Cassi did not act like she wanted to go.  On the course, she did what I asked, but she was slow and got a refusal, so she got a NQ (non-qualifying run).

Then I ran over to the other ring to run Teka.  She did everything I asked, without being too slow, except for the (6 pole) weaves.  I almost took her off course when I got confused after the tire jump, thinking I needed to go to the teeter but still had a jump first.  She recovered and finished strong.  And got a Q--third place.

We had a break for a while and then everything was total chaos.  The ring where Teka was going to run Open Jumpers with Weaves was running behind, so she was about to run when the Open FAST course was ready for walk-through.  FAST is the hardest walk-through for me too.  I ran to get Teka into her course, where she had a great lead out--I was standing with 2 jumps between us and she jumped them both when I released her from her stay.  She had a little trouble with the weaves, so even with our strong finish, she didn't finish in time to get a Q.

I was able to walk the FAST course for another minute, and then all of a sudden it was Cassi's turn and I wasn't ready.  I ran to get her, and warned M that Teka was only a few dogs away.  Well, maybe I shouldn't have done that, because he missed Cassi's run.  She did the weaves just fine.  I thought the best way to go for flow would take her to the tire jump, and since there aren't refusals in FAST, I went for it.  I think the judge was kind of amused by Cassi's pause and jump.  She got her bonus, finished strong, and got a Q--second place.

Then I had some time with Teka, so I tried to keep her happy.  I thought we were doing well, until we got on course.  She just didn't want to do anything (except the teeter which she did just fine).  I was trying to send her over the jump in the bonus, but she pulled off the first time.  So I took her around to another obstacle, trying to get some momentum, and she still wouldn't do it.  And I tried a third time and she wouldn't do it.  We left the ring--defeated.  I mean, with a NQ.  That was a pretty frustrating run to end the day.

After some shopping, we brought the truck back over to the agility unloading zone and M sent me to get my final scores.  And then I waited.  And waited.  And asked about them--they weren't ready.  And waited.  M had to go back to the east parking since it was more than 10 minutes (unloading zone limit).  He came back and reported that they tried to charge him for parking again.  Power hungry idiots.  I finally got my scores and ribbons and we left.  A long, hot, frustrating day for such a fun sport.

MS research study

I completed a MS research study survey.  Here's what the email said (in part)

you will be asked to complete a series of questionnaires that will be looking at your quality of life, psychosocial adjustment, emotional growth and social support as it pertains to you multiple sclerosis diagnosis. 

A dollar will be donated to multiple sclerosis research for every participant that completes the study.

My quality of life would be better if I didn't have MS, I have adjusted as best as I can, I would grow emotionally with or without MS, and I have the social support that I have always had (and appreciate!)

Friday, March 4, 2011

News

I didn't watch the Charlie Sheen mess, but have heard a lot about it.  I was curious when I saw this headline, but I didn't realize The Disposable Woman was about his history with women.  I can't believe that his agent said this:“You’re entitled to behave however the hell you like as long as you don’t scare the horses and the children,”  As the author says: Scaring women, it seems, was just fine.  Wow, we've come a long way, baby.  Not.

I bought coconut oil on a whim during a shopping trip to Sprouts.  And then I got home and thought--what do I do with this?  It's not a liquid, as I thought.  Then I read something about how we aren't supposed to use solid oils and wondered if I was wrong to buy it.  I had used it in the skillet for some dishes, but really have been waiting for a sign.  There are cooks using it in place of Crisco in pastry crusts and baked goods, among other things!  I can't wait to try making "Magic Shell" (which I stopped buying when I read the ingredients).

Tired and longing for home

Recently, as my DH drove us toward our destination near our home, I pointed out a Baptist church.  I noticed it, in particular, because it didn't have a name--the sign just said Baptist Church.  As we passed it, I realized there was another sign that appeared to say Lutheran something...and we were out of sight.  He asked me why I think I'm Baptist.  Given my 2009 resolution to go to church once a month, mostly Baptist churches, and my final decision that none of those churches would be MY church, I can see why he might ask.  I didn't have a great answer for him.  I know I am not a good Southern Baptist--I drink and dance and don't think "the gays" should have less rights than anyone else.

So as I was going from link to link online, I found this post on Dirty Shame where the author states: I'll always be Baptist, like I'll always be from the South.  That's how it is.  That sounds so much better than whatever incoherent answer I gave my DH.

Now that we have moved, I feel that I should try again to find my church home.  But I was (long pause--looking for words) disheartened by the congregations, the pastors, the overly casual attire, the music, the attitudes.  The Dirty Shame author quotes James Kavanaugh's 1967 book, A Modern Priest Looks At His Outdated Church, speaking of a congregant: he was tired...He said quietly that all he wanted was a home...  Then the Dirty Shame author writes a letter to the pastor.  (I was going to quote it in part, but decided it is better in whole--I have bolded the parts I wanted to quote.)

Dear preacher/pastor/minister/priest,

We're tired. Just know that when you're preparing sermons or homilies and song sets and emphases of different durations. What does that mean? We're not entirely sure, but keep it simple. No, we don't want the cookies on the lowest shelf, that's not what we're talking about. Yes, we're sheep and goats, both not always the brightest in the barnyard, but don't forget that before that, we're men and women. We need you, we really do. Whether you like it or not, you represent God. Aren't we all ministers, the priesthood of all believers stuff? Sure, you bet, we know that and more importantly, we believe that. But we still need someone to hold our hands from time to time, someone to stand shouldered to us, remind us of the truth...someone to break the bread and bless the wine and say the words this world ignores...someone to wrestle with the Text, because we're wrestling with texts all day long, many of which are not profitable for doctrine, correction, or reproof...someone to lift holy hands in prayer for us, for our children, our mothers and fathers and friends and lovers...someone to proclaim the good news and not fret about what we do or don't with it, just proclaim it, just tell it, just sing it over again to us, do it beautifully, classically, timelessly, profoundly, be creative to the nth degree, don't worry so much about making angels weep, seek to make men and women pause, and long for home.

Sincerely,

Your friends

Okay, so I underlined it after I bolded it.  Is that overkill?  I'm just sayin'.  I'm just saying that I want to hear the message, but I don't want to get (verbally) beat up or judged if I don't appear to do what you think I should.  (Isn't that between me and God anyway?)  I want to hear the music, however new and creative you want to be--but give me the timeless, classic, beautiful hymns too.  The telling of the good news and the singing of those splendid songs have given relief to generations of tired believers.  And made us long for home.

Thursday, March 3, 2011

Pimento cheese and IHOP "fruit"

I'm kind of a southern girl--but not totally.  I grew up in inner city Houston, and somehow, I was exposed to enough southern-ess that it is familiar to me.  It's almost like deja-vu, experiencing or hearing something southern.  But I am not overtly southern and am no expert on the deep South.

I have a bit of a fascination with pimento cheese.  I have a recipe (I haven't used, but can't get rid of) somewhere for how to make it.  I think I always had the "store-bought" kind.  I see it in the grocery store occassionally and think about buying it.  But it's not very good for you, so I have probably indulged that instinctive pull to the PC once in the past ten years.  Yes, I ate the whole (small) container--somehow managing to make it last for a few snacks, on crackers, apples, and celery sticks.  I didn't use it in a sandwich because I didn't have white bread.  And it has to be white bread.

The last story in the current issue of Gravy is about Pimento Cheese in North Carolina.  This must be why I've never seen anyone I know eat/have/serve PC:

“Approximately eighty percent of pimento cheese spreads are sold in eleven Southeastern markets,” Simerly told me, with Raleigh-Durham and Charlotte ranking as the two biggest pimento cheese–consuming locales.

Another story (that I didn't even read) in this issue had this quote:

“I took my son to the IHOP, and they brought out pancakes with canned fruit on top. It broke his heart.”

Last time I ordered blueberry pancakes at IHOP, I forgot to tell the server that I didn't want any of that goopy crap on my pancakes.  It's not fruit, so I'd rather have syrup.  So, I got that glop on my pancakes.  I didn't realize the feeling I had at that moment was my heart breaking...

Wednesday, March 2, 2011

Food and nutrition news and views

I found something to share with the gluten-free folks (I came to this through a link I saw for Red Velvet Cheesecake Pops.  I never expect to have the time to make these, but OMG, what an awesome idea.)

And some slow cooker recipes, including this pulled pork.  Have slow cooker, will learn and plan to use it.

What's in your smoothie?  I'm a fan of Jamba Juice and Robek's, going there for lunch occassionally when I've had a large breakfast.  I look at the nutrition book and stay away from the milkshakes in disguise.  Even so, I did not realize that there is Splenda in the dairy base at JJ (which I thought was frozen milk or soymilk for some reason).  I don't agree with the article wholeheartedly, but I know that I do NOT get "smoothies" at fast food restaurants after watching an employee make one at the milkshake machine.  The "real juice" advertised was more of a fruit syrup that went into the bottom of the cup and then was blended with ice cream.  So I make smoothies at home.  There is so much flexibility: frozen fruit, milk/almond milk/green tea/juice, yogurt (Cascade Fresh, the large container of blueberry or strawberry for sweetness), additives like flax or I used to do protein powder....  I have also used peanut butter on occassion; other nut butters would work too.

Tomato sauces in eco packaging and sweeted with carrot puree.  Hmm, pureed carrots as a sweetener.  Let the experiements begin.

The most awesome garden planner using the square foot gardening concept.  Use one of the pre-planned gardens and edit or plan from scratch.  I've been on this site before but don't remember this planner.

Tuesday, March 1, 2011

Weave class

Quick notes:

  • Jump to 6 weave channel to jump to 12 weave channel to tunnel
  • 4 pole entry exercise
  • Jump to 12 weave-omatic to chute, out jump, broad jump, jump, rear cross back to 12 weave-omatic, ending with the jump

Contact 301

Quick notes:

  • Contact board--clicking for back feet or all feet on
  • Teeter--high, banging end with 2 front feet
  • A-frame--black plus 6 height, send, run, recall
  • Dog walk--low, back chain to pouch at 3 feet out from the end, worked to running entire length
Another dog was using a "Manners Minder" which dispenses treats using a remote control.  It's a way to treat at a distance without the dog "cheating."  Kinda cool.