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

Saturday, July 31, 2010

Week with and without

This week was humid and muggy. I wonder if that has something to do with how crappy I felt all week. I had a lot of pain, the one in my back (butt) that causes me to barely be able to walk at times, but it comes and goes for hours. It's frustrating, draining, makes it very hard to be productive. It finally relented a bit as the week progressed and it occurred to me on Friday that I was actually having pain all the way down the back of my left leg, starting at that back/butt area, probably the sacrum or sciatica. I've been doing the recommended yoga and stretches all week but no relief. I'm tired....

M was in Germany all week and is coming back today. I'm excited to see him but I don't think I'm going to get much done today before he comes home. I actually found several spurts of energy this week and was able to get some packing and cleaning done. We have had good news on the home front. The appraisal came in low, and the bank is letting us lower the purchase price to match. Surprisingly, they are replacing the broken sliding door. We expect the underwriting to take a couple of weeks and then we can start working on the house and getting moved. Hmm, still need a moving company.

Tuesday, July 27, 2010

Vitamin D Deficiency for everyone

An article states that most of the population is Vitamin D deficient. It goes on to say that most people are not getting enough sun, cannot get enough Vitamin D from diet, and are at risk for many things not generally seen as related. There was a study in Finland tying Vitamin D deficiency to Type 1 diabetes. MS is mentioned as an autoimmune disorder linked to Vitamin D deficiency.

The article also talks about Vitamin D toxicity, which can't happen through sun and diet, but definitely through supplements. The doctors did not feel that toxicity could be reached very easily.

Symptoms of vitamin D toxicity include nausea, vomiting, poor appetite, constipation, weakness and weight loss, as well as dangerous amounts of calcium that can result in kidney stones, confusion and abnormal heart rhythms.

Wednesday, July 21, 2010

Thyroid, Vitamin D, and MS on FB

The other day, I got a note in the mail that my appointment was cancelled, but when I called, they were able to get me in (with the person I thought I was seeing, but wasn't) for almost the same time. Anyway, I went today to get my results.

First, the thyroid ultrasound shows a small (.4, they don't biopsy till 1) node. The blood tests were, apparently, confusing. The original tests that landed me in this office showed signs of potential hyperthyroid. The new results were all over the place, and the worst was in the opposite direction, hypothyroid. TSH should be at 1; mine was at 8! So my thyroid is under-active. Other thyroid numbers were T3 at 3.2 and T4 at .9. I get to start daily medication, which I have to take first thing in the morning and then not eat for at least an hour.

In addition, they ordered a Vitamin D test. I've asked several doctors if I should have it, since there is a lot of research showing a link between MS and Vitamin D deficiency, but I haven't had any luck getting someone to order the test for me. A typical Vitamin D test result is 50-60; mine was 24, which is apparently very deficient. A typical Vitamin D tablet is 1000 IU, recommended once a day. I now have to take 5000 IU with dinner every day. That's five pills. Yuck. My day is going to revolve around pills and vitamins.

Semi-related, the National Multiple Sclerosis Society is asking on FB In planning for MS Awareness Week 2011, the Society wants to know: in one sentence, what does MS mean to you? There are a LOT of replies, ranging from super optimistic, finding hope in Jesus/God, hopeful for a treatment or cure, angry, upset, sad and defeated. If I were to reply, it could vary depending on the day. But my first instinct was "tired." I am tired of knowing there's something wrong with me, tired of dealing with the various treatments (but thankful there is something, better than nothing), tired of the unknown course my life is taking because of this disease, tired of not having control over my life or my body, tired of the pain, tired of people assuming I'm in pain when I'm not, tired of the fatigue, tired of people thinking they know what I'm going through (with the possible exception of other MSers), tired of MS being part of who I am, tired of this emotional roller coaster, tired of hating my body for this huge betrayal, tired of me not taking care of myself enough, tired of feeling guilty about it, tired of the platitudes (for example, God doesn't give us anything we can't handle), tired of hearing that it's a blessing (yes, I have met people I love who I wouldn't have, but really, I'm not buying it, there's got to be another word), and tired of being tired. So I'm going to bed. :)

Tuesday, July 20, 2010

A writer has a moment of clarity

I really liked this:

I was not put on this beautiful earth to impress you. My life is mine to live how I so choose. If you do not like or accept me, although unfortunate, I do not care. I can not live my life to meet your standards. I can not and will not pretend to be anyone except for who am I. Nor will I change my personality....

If I stand behind you it is not for my own protection. I stand behind you because I have your back. If I love you I will follow you to the depths of hell to keep you safe. However, make no mistake, I am not a follower. I was born to lead. I march to my own beat and hold my own drums. My burdens are mine to carry. If I ask you for help it is not because I depend on you. It is because you are reliable and I know that I can trust you....

Friday, July 16, 2010

Ode to mommies

I had a different reaction to this article "Why don't friends with kids have time?" than I guess most would. This non-mom questions what stay-at-home moms do all day, that they don't have time for her. I read this and thought about something I have wondered quite often: how do the moms I know (stay-at-home or not) get so much done and I can't? It amazes me that people can mop their floor every day or go to the gym every day, or pretty much do anything every day. I can't even keep my kitchen clean from one day to the next. I'm worn out and I don't even have kids! I know the spoon theory applies to me as an MSer, but it is annoying to know that people my age are able to do so much more than I can do in a day. So why don't I have more time?!

I was at Rubio's grabbing a couple of tacos for lunch and there was a group of moms with very young kids having lunch. I have to give it up for this mother in the group. Her daughter, probably 2 or 3 years old, did that ear-piercing scream that no one thinks is cute. The mom was obviously a little embarrassed, said out loud "sorry" and talked quietly to the girl. Then the girl screamed again, and mom packed up, said her goodbyes and left. You go, mom, that is the best I have ever seen someone follow their threat! And on the way out, the girl wanted a drink out of mom's cup, so mom said no and threw it away instead of giving it to her. I wanted to tell her that was the best parenting I've seen in public in a while, but obviously she was busy.

Thursday, July 15, 2010

Reading the obits?

I ran across the most interesting obituary EVER, on this blog which also had this to report:
-I’m reminded this morning of a quote from Warren Zevon as he faced his own mortality. David Letterman asked him whether he had a different understanding now than before his illness. His reply: “Just how much you’re supposed to enjoy every sandwich.”

Wednesday, July 14, 2010

Mmm, cake

My husband's birthday was last Friday and he asked me to send an evite to a few people, inviting them to drinks and dinner. I was going to ask everyone to join us to celebrate his last pre-40 birthday, but he asked me to change it. After I sent it out, I realized I had only deleted "pre-40" so I edited it again, but apparently not quickly enough. One of his friends claimed he showed up because he "couldn't miss Mike's last birthday!" :)

Here is the cake we should have had: (and check out those other cakewrecks!)

Tuesday, July 13, 2010

Green cleaning parties

Wow, I don't have enough to do, so let's host a party to make our own cleaning products. Or we can accept that dirt is good. The author says "playing in the dirt makes people happier and their immune systems’ stronger, thanks to safe bacteria that are only found in soil....Instead of spending time with friends and family, we fret over how our homes look and every last speck of dust." So when I invite you over to my dirty house, just say thanks and ignore the dust!

Monday, July 12, 2010

Is it all Small Stuff?

A few years ago, the author of Don't Sweat the Small Stuff (and it's all small stuff) died on a flight from a blood clot. His wife has written a book and another author wrote a review of it but included a link to an article that she wrote about an conversation she had with him right before his death.

....we are gifted in ways that support our destiny, and we do have control over our lives. "Bad" things happen-but it is our response that matters, how we handle our emotions. We go to great places in life, not by making huge corrections, but by implementing tiny changes in our course as a pilot would.

Like many people, I joke that I wish I wasn't so gifted, but in reality, I just don't feel that I have control and I don't like how I respond to, well, everything. Work in progress...

Sunday, July 11, 2010

Soy skepticism

I'm intrigued to see this questioning the health benefits of soy. I like some soy products but don't find that drinking chocolate soy milk does anything "more" for me than drinking low-fat organic chocolate milk. I have been a soy skeptic ever since I learned that the soy industry is subsidized similar to the corn industry. (And the corn industry subsidies explain a lot of the HFCS permeation in practically everything.) I don't plan to avoid soy but I don't think I'll choose soy over another choice. Ways to reduce soy from diet and recognize soy aliases

Friday, July 9, 2010

Homemade Chalk

I don't have kids or any (current) reason to make chalk, but this is a great idea for all those parents (or crafty people making gifts) that have kids drawing in the driveway.

Thursday, July 8, 2010

Eco beauty

Hmm, vinegar and water for sunburns, whitening toothpaste for discolored nails, and baking soda for chapped lips, interesting tips.

Wednesday, July 7, 2010

Doctor, doctor, give me some news?

Today, I met my friend M's friend, Dr R, who is an endocrinologist. When Dr. G reviewed my labs before the infusion last month, he said that one of my thyroid numbers was off and, although he wasn't concerned about it, I should have my GP review the results. Since my GP recently died, I asked around and only got my friend M's recommendations. I got through to Dr R's office before the other rec (which I still haven't followed up on--I was hoping to find a rec that wasn't in Scottsdale since that is so far, especially after we move) and scheduled today's appointment.

I met with Dr R today and she indicated I may have hyperthyroidism. She felt my thyroid, which she thinks is enlarged and suggested lab work tomorrow, an ultrasound next week, and then a follow up appointment. Interestingly, she suggested that in addition to the thyroid labs, she wants a vitamin D test for my MS. I haven't been able to get any doctor to order that for me. I'm super-curious! She seems to think that if she can treat my thyroid successfully, it may help with my fatigue and bowel issues. If that is true, I think she may finally help me with my pain issues. Am I being too optimistic?

Later, I went to Hope for my monthly check in. E had trouble getting my vein and had to stick me twice. I was surprised that they didn't have my MRI results yet. That's a pretty long time. Maybe next time. I see Dr G in September, so definitely by then!

Tuesday, July 6, 2010

Surround yourself with acceptance

We were talking with friends this weekend who have done the boot camp/P90X programs and are in great shape. As we talked about it, I was struck by how accepting they are. They have known me fat and thin and never made me feel that it mattered. I've considered both programs but am reluctant because of my limitations. I know that I use the MonSter as an excuse to avoid doing the hard work, but also that I've had a lot of issues with pain when I don't take it easy.

I ran across this article, Coming Alive, and thought it expressed the direction of my thoughts.

Surround yourself with acceptance. Invite people into your life who accept you as you are. Most important, show yourself as much acceptance as you can. As part of my morning ritual, I say, ‘I love you just as you are’ and mentally give myself the biggest warmest hug I can. Go ahead, try it – nobody’s looking! It’s amazing how your energy will shift just by doing that.

I know I need to make some changes and really kick myself in the butt. I've been maintaining at this weight that is my mental "top" weight (I was here when I started losing weight before my diagnosis. I lost 50 then, and have put it back on a few years ago. I know there is a mental roadblock that I need to find and conquer.

Monday, July 5, 2010

Holiday weekend

What a weekend! Friday night, we went out with friends for T's 40th birthday. Saturday, we went out with M and H to the Keg in Tempe and then to the Big Bang piano bar on Mill. That was a blast. Sunday, we went to a pool party thrown by J, one of M's friends from work. We didn't swim (my sunburn is peeling) but talked with someone who had a Vizsla (a Marge dog; they brought to the party) and someone with a Weim (they got their previous Weim from Tiena). Later that night, we went out with R and D, dinner, club and drinks back at our house. That was a hard night to do anything--a lot was closed near our house, either for the holiday, or Sunday, or just permanently closed. And today, we went to lunch and the movies with M's parents, and saw Knight and Day, kind of cute and funny. I feel like I didn't get anything done, but we had fun!