Maritzia’s Thoughts

I know I haven’t been posting much lately, but I have been incredibly busy. One of the reasons I’ve been so busy is because the drug I’m taking for the fibromyalgia has been so incredibly effective (milnacipran, look it up). And incredible isn’t an understatement. It’s a wonder drug….honestly, it is. I have so much more energy, and so much less pain. Before I started on this clinical trial, I pretty much went to work and went home and vegged. I had no energy for anything else and even just going grocery shopping over the weekend could mean that I didn’t make it through the whole work week the next week.

So, I was at my regular appointment with my study coordinator today, and she mentioned that they are still looking for participants for the clinical trial. I would have mentioned this here before, but I was erroneously under the assumption that the trial had closed to new participants…but it turned out that was just the double-blind portion of the trial. The current trial is a 3 year open label trial. You get study medications for free and they pay you for each study visit you make. There are study centers across the country, so you don’t have to live in a particular geographical region. So, if you have fibromyalgia and are interested in participating in this study, go to http://clinicaltrials.gov/ct/show/NCT00314249?order=14 to get more information.

Seriously, folks, we’re talking serious wonder drug.

A couple of caveat’s….be aware that you will have to wash off of all pain meds (except over the counter) and all antidepressants for two weeks prior to starting the trial. That’s one of the main reasons they are having trouble finding participants. Not many people want to go off of their drugs, which I understand entirely. You have to decide if the possibility of future improvement is worth the month or so of increased pain and fatigue until the new drug kicks in. If you’re able to do it, though, I do highly recommend trying to qualify for the trial. The more people they can get for the trial, the sooner it gets approved by the FDA and the sooner the medication becomes widely available to folks with FMS throughout the country.

If you don’t have FMS but know someone with it, forward the link to them

That is all. You may continue with your daily web-browsing.

Yes, I know the site disappeared for a couple of weeks.  I forgot to renew the domain, but it’s renewed now and back up and running.

For all of you guys that have been clicking on my link all this time to find no updates…wow…I didn’t think I had a following, much less a loyal one *laughs*.  Thanks for the support.  It makes me feel good to know people actually like what I have to say.

And now on to the update….

First of all, the new job has been very, very busy.  They are really utilizing all of my experience here, and that’s a good thing.  I feel like I am really having an impact on the organization, and it’s been a long, long time since I felt really good about my work.  In November, we had our big, annual fundraiser, which I spent hours and hours working on.  I feel really good about it because it was the most successful fundraiser in the history of the agency, and my work added to that.

November was also NaNoWriMo.  I threw caution to the wind and signed up this year.  The challenge is to write a 50,000 word novel in just 30 days.  How did I do, you ask?

Yep, I wrote 52,548 words and finished my novel.  It’s about a man and woman who have a relationship almost entirely by mail.  It’s based loosely in my husband’s and my relationship, which started by e-mail.  I’m in the process now of researching, editing and rewriting.  I’m really proud of it, though.  Writing a book has long been a dream of mine, and I’m thrilled that I actually did it.  Much thanks to my darling husband and his family for all the encouragement and support!

In gaming news, we played a variety of games.  We went from Shards of Dalaya, to Anarchy On-line, to Eve On-line, to EQII.  We really enjoyed EQII, but after a while, it got boring.  Pretty much each tier of quests is the same, just with harder mobs.  So, now we’re back to EQ, playing on Test Server again.  I forgot how much I really enjoyed the people there.  The people really do make all the difference.  In about 3 months on EQII, the only time anyone talked to me was when they wanted something.  I didn’t really think we had made such an impact on the server community, but everyone seemed to remember us when we got back.  I had welcome backs from people I don’t ever remember meeting in game *laughs*.  So, for now, we’re back in EQ and having fun.

On the health front:  I just finished the Phase II trial on the Milnacipran for the fibromyalgia.  I knew I was doing really well, but I thought most of it was due to the increase in thyroid I had around the same time.  Well, in between the rollover from the Phase II to Phase III trials, we had to wash off the drug.  Man, it’s amazing how much of an effect it was having.  There were a lot of problems I hadn’t even noticed were improved, which I noticed strongly when they came back *laughs*.  I’m starting back on the drug today, with a two week ramp up on the dose to the first dosage level of 100 mg.  I am so looking forward to being back on the drug.  These last two weeks have been really, reallly hard.  So, all you folks with Fibromyalgia, keep an eye out for Milnacipran to get FDA approval.  If you are in Europe, I believe it is already available.  Don’t know about Canada yet.  But I do know that I have had a tremendous response to the drug.

Lots of other things to write about, but I’ve exhausted my little store of energy, and I really need to get some work done.  I’ll try and add more later.

Ohh…one last thing.  Mark has an interview Thursday morning with a First Nations group to do some teaching.  Say a prayer, cast a spell, think positive thoughts, whatever your religious philosophy allows.  Mark and I both appreciate it very much.

Wow…I’ve been really bad about updating, haven’t I?

Well…let’s see….where to start?

First and foremost, I got a job!  (and there was much rejoicing)  I got the job at the youth services place I talked about before.  You know…the job I really, really wanted?  *laughs*.  It’s a pay cut, but one I can live with because I really like the place.  I started a week ago, right after Labor Day, and I’m still getting my feet wet.  There’s a huge amount to learn, because this place just does so many different things.  Last week was a little slow getting started, but it’s beginning to pick up.  The Executive Director is feeling more comfortable throwing things at me, so I now have a number of things on my to do list, which is good, because I bitterly hate to be bored *laughs*.  The only bad thing is I don’t have much time for things like blog browsing like I used to!  So I apologize in advance to all of you who may feel neglected.  I’m still reading a number of your blogs, but I just don’t have that much time to reply like I did.

Second….a new game!  My husband and I have been looking around for a new game to play for a while.  It’s been well over a year since we left EQ, and finding a new game wasn’t that much of a priority for me while I was so sick.  I didn’t have enough energy to play for the most part.  But now that I’m feeling so much better and have so much more energy, I really want to play again.  So, I finally was really pitiful and my husband agreed to give up on the Sony hate enough to let me get EQII.  I’ve been playing the Trial of the Isle, which is a one week free trial of the newbie area.  I have to admit that I haven’t enjoyed a game so much in ages.  The quests are interesting and are backed up by the story line.  There’s a variety of things to do, including tradeskilling, which I love.  So, he’s out getting the game for me today if he can find it locally.  Otherwise, we’ll have to order it on-line.  We already have a DVD reader/writer on order.  It’s something we need anyway, so we decided to go ahead and get it since more and more software media is being released on DVD only.  The only problem is that Mark’s computer doesn’t run the game that well.  The lag causes the screen to be jumpy when he moves and it gives him a headache.  He’s working with the options to tune performance, but it’s obvious that upgrading his computer is going to have to be a priority when we get more money.  In the meantime, he’s still working on studying for his MCAD exams, so he doesn’t want to get heavily into a game right now anyway.  But I intend to get my enjoyment’s worth out of it!

In other news, I’m doing much, much better on the new treatments.  I don’t know if it’s the increased thyroid dose or the study medication (which judging by the side effects, I’ve got the medication and not the placebo), but I’m feeling tremendously better.  Much more energized.  My mood is incredibly improved.  My sex drive is even starting to kick back in a bit.  We’re walking 45 minutes to an hour on weeknights and going much further than we were before.  And on weekends, we’re doing a 3-4 mile walk, which isn’t nearly as exhausting as it used to be.  It takes us about two hours, and we then take the next day off of walking.  So, all in all, my life is definitely looking up!

I had an interview on Wednesday for an Exec Asst to the plant manager at the local Alcoa plant and this morning I had an interview for an exec asst at a local non-profit that works with abused and at-risk youths.

The interview Wednesday was so-so.  The people were nice enough, but I didn’t really click with the plant manager.  I liked all of them, but I didn’t really leave there all that enthused.  It would be a long drive (I know, 30 minustes is not that long to you big city folks, but I’m used to a 5 minute commute), and I wouldn’t be able to come home for lunch anymore.  And since we only have one car, it’d be a hell of a long way and back for Mark on those days he needs the car.  And, as I said, I left the interview feeling less than enthused.  *shrugs*  Not that I’d turn it down if they offered it, it just wouldn’t be my first choice.

The 2nd interview was much better.  I really clicked with all the folks I interviewed with.  I’d be supporting the three of them (the exec director, fundraising director, and operations director).  They seemed like a nice, tight knit group and had a good sense of humor.  I more than meet what they’re looking for right down to a technical background.  It would be a varied job, which I like, and besides, I really liked the people (did I mention that already?).  Anyway, the feeling must have been mutual, because a little more than an hour after the interview, they called me back for a 2nd interview with them.  That’s on Monday morning at 9:00 a.m., so any more good thoughts you want to send my way will be greatly appreciated.

In other news, I can’t remember if I told you guys that I found a new doctor and I really, really liked her.  I saw her about 2 weeks ago, and she immediately wrote me a prescription for a higher thyroid dose.  I also convinced her to let me switch to Armour thyroid, which I did very well on before.  I immediately got a boost from the higher amounts of T3 in the armour, and when the extra T4 kicks in, I should be doing much better.  Already, I’m in a better frame of mind.  I’m less tired, less depressed, and Mark and I have been doing some much longer walks since all of my energy doesn’t have to go into work.  Of course, I also started on the medication for the clinical trial a week ago, and yesterday the dose increased.  So it’s also possible that I’m getting the medication instead of the placebo and that’s having an effect, too.  It’s hard to say right now.  I did find out that after the 15 weeks of the double-blinded trial, I’ll be moved to an open trial where I’ll definitely get the medication, and that trial lasts for 3 years.  So that’s good too.

So, all in all, I’m in a much better frame of mind.  Keep your fingers crossed for me on Monday.  The Goddess leads us on some strange paths sometimes, but they always seem to work out, even if the light is a bit dim on the path from time to time.

Sorry guys. No update for a couple of days. All this stress has obviously weakened the immune system, cuz I’m sick as a dog. Some kind of summer flu or something. It’s 80 degrees here and I spent the day under my heating blanking *laughs…coughs…wheezes…chokes*

Ack…back to bed for me. Maybe my sweetie’ll make me a nice hot toddie….

I sent out 51 letters on Saturday to doctors in my county and the neighboring one.  I got several immediate responses from doctors who only called to tell me that what I wanted was dangerous (*expletive deleted* doctors).  However, last night I got a very nice e-mail from a doctor who agrees that there is some merit to the theory of thyroid resistance and is currently treating patients with supraphysiological doses.  She said that as long as I understand the possible side effects and agree to adequate monitoring, she’s willing to treat me.  Hooray!

I figured it’d take me months to find someone who was willing to help me and would probably have to pay out of pocket.  But this woman is actually on my insurance!  Granted, she’s over an hour away, but my doctor in Houston was too.  Heck, I’d drive across the state if I could find a doctor open to helping me.

On the same day, I got a call from a local clinic about a clinical trial for a new antidepressant that they’ve had really good results with in treating the pain and fatigue of fibromyalgia.  So Mark is picking up the information on it for me this morning.  It’s called milnacipran, and they’ve had really good results with it in Europe, where several trials have been run.  So, I’m excited about that possibility.  While the thyroid helps most of my symptoms, it really never did anything for the pain.  That has always continued to be a problem.  So, with any luck I’ll get in on that trial as well.

In other news, I had a talk with my boss this week about my future after he leaves.  He tried to work it so I could get enough money out of unemployment that I could take a layoff package and go back to school full time, but that didn’t work out.  So, he said he would make sure there is a place for me where I don’t have to take a substantial pay cut.  So keep your fingers crossed for me.

I took some new pictures of the puppies, but I haven’t downloaded them yet.  I’ll post them when I do.  They’re just so darn cute!  Even if I do say so myself.

So, all in all, I’m much less stressed out (which is good because I’m all broken out with shingles and my bowel is in an uproar) and feeling quite a bit more positive.  Now we just need to find a place just on the other side of the border that’s still close enough for me to commute!

If you dislike foul language, I’d suggest you just skip on to the next entry in my journal, because there’s about to be a huge rant with much profanity involved!

Okay, you asked for it!

(more…)

I’m always running across interesting people as I surf the web, and you know, I never share them with you folks who read my blog.  So, today I’m a sharin’ (sorry, the lady in question is a Texan, and she’s bringin’ out mah accent here).  If you are offended by profanity, I suggest you not follow this link *laughs*, but I really do get a kick out of her blog.  I don’t agree with everything she posts, but I do a great deal of it, and besides, the way she puts things amuses me!  So, without further ado, here’s YellowDog Granny.  Enjoy!

In other news, the mother-in-law is in town.  She’s doing tremendously better on her medication.  I’m just so happy to see her feeling better and more positive.  We were really worried about her for a while.  Anyway, we’re planning to take a day drive over the 4th of July weekend, probably east from Sedro Wooley.  We haven’t been doing much driving lately because of gas prices, and I do miss it.  It’s always been one of my favorite pass times.

It looks like my boss has gotten another job offer.  He’s negotiating the package now, and if they make him a reasonable offer, he’ll probably use that to negotiate here for a better deal.  If he doesn’t get it, then it’ll be sayonara boss.  And that’s a real shame because I really will miss him.  He’s a great guy to work for.

 I’ve got a ton of books to pick up at the library this weekend.  I’ve decided to do some reading about the celtic Gods and Goddesses since Celtic spirituality and culture has always been a great draw for me.  If gas wasn’t so high and my energy so low, I would go to the Celtic Catholic Church in Seattle occasionally.  But that isn’t to be for a time.  Maybe after Mark gets work.

Speaking of Mark, he’s still plugging away on his program.  He made a big screw up last week when he was trying to work with a headache and in fixing it, he figured out how to fix the multi-threading issue he had been trying to find a work around for!  Yay husband!  Anyway, he’s hoping to get the project finished and send it off to CN next week to see if they like it.  Whether they buy it or not, it’s been great experience for him working with .net.

I’ve got a doctor’s appointment in 2 weeks to discuss the thyroid issue.  I have no idea if she’ll even be open to discussing a TSH suppressive dose of thyroid, but I have all my information printed out to give her.  Cross your fingers, pray, cast spells…whatever you’re into…that I get the thyroid dose I need.

 And that’s all for today.  Have a good weekend folks.

Not a lot happening. The long weekend was good. I really needed the extra day off.

I got a little bored with Shards of Dalaya. Mark doesn’t really like to play, and without someone else to keep me company, I started losing interest. Mark is doing a free trial of Eve Online. I beta’d Eve and didn’t enjoy it that much. Was a little too impersonal for me. But Mark likes RTS games, so this is something that he enjoys. I think it’s the programmer in him. I’m currently playing a free account on Anarchy Online. I don’t know if I’ll upgrade to a paid account or not. The level of dudishness is quite high among most players. *shrugs* I’m really torn about what I want to play. With Vanguard out of the picture, I’m not sure which direction to go in. I won’t play another Sony game. Maybe D&D Online? I’ll probably keep playing AO for a little while. The thing about this game is that with the back story, there’s a huge potential for roleplaying. I just don’t know how to find that roleplay community.

In other news, I’m teaching myself to knit again. I’ve always been an avid crocheter, but I’ve been a bit bored with crocheting lately. So, I got a book this weekend and am teaching myself to knit again. I’m currently working on a ribknit scarf just for practice, until I get comfortable again. Then I might make an afghan for my sister. Or a scarf for my boss. He’s up for a job in Chicago, and if he gets it, I might make him a scarf and hat for a going away gift. God knows he’ll need it in Chicago. *shivers*

I’m of two minds about him going. I really want him to find a better place for himself than here. He’s not really appreciated here, and this place isn’t a challenge for him. The extreme they take things to in the area of community governance makes him crazy. He’s the kind of guy that likes decisions to be made and not to waffle forever because you want everyone to be happy. Sometimes, someone has to be the bad guy and make unpopular decisions. And no one here wants to be that person. And, of course, there’s the problem that this city is just *so* incredibly white. I mean, really really white. He’s black, his wife is cuban, and he’s afraid to have his kids grow up without sufficient rolemodels of color in their lives. So, if he gets this job in Chicago, I’m happy for him. But, it means real flux for me. I’ve had this happen before, when as an assistant you get a new boss. It can turn out to be good, but on the other hand, it can be a complete disaster. To have a successful boss/assistant relationship, you have to have a certain report, which I don’t have with many people. I’ve had a great one with Val, so I’m not looking forward to him leaving me.

In the health news, I had more bloodwork last week, and it looks like the numbers have stopped going up just on the low side of normal, so it’s likely I’ll get my PICC out next week (hooray!). I’m so tired of wearing that sleeve to take a shower and not being able to life things. I’m ready for this interval in my life to be over. And once I can say officially that the anemia is fixed, I can start annoying doctors about my thyroid dose. First thing I’ll do is see my doctor of record. I’ve been seeing the nurse practitioner, and she won’t even talk about increasing my thyroid dose. So I’ll see the doctor, and if she’s of the same mind, I’ll send letters out to all the doctors on my insurance taking new patients and see if I can find someone more compatible. My energy levels are still very low, and I have got to do something about it.

On the college front, I got my transfer report this week, and it looks like I’ll have all but 2 classes of my core curriculum covered, and I have more than enough classes to cover any and all electives. So pretty much all I’ll need to take are my major requirements. I’ll make an appointment with one of the advisors in the Psych Dept over the summer and talk about what exactly I’ll have to take and start planning classes. I figure for now I’ll take 1 class a semester. I don’t think I have the energy levels to do more than that and work too. But it’s a start! It’s a start.

I just added a new page to this site talking about my experiences with fibromyalgia.  It might be a worthwhile read for any of you with fibromyalgia and/or chronic fatigue.  Specifically it talks about the theory of peripheral thyroid resistance.  Give it a read.

Note:  it’s not spam, I don’t offer to sell you anything or tell you how to be cured.  It’s just my experience with this particular theory.