Methotrexate "Voluntary" Recall

Hi Friends,

My guess is that if you visit a larger pharmacy, that they are all over this... but as we all know, it is always a great idea to keep an eye on your own health matters as well.

There has been a recall on two batches of injectable Methotrexate (MTX) that were distributed in the US and Poland.   The lot numbers and expiration dates of the two recalled lots are:  CL0996 (expiration date 12/2013) and CJ4948 (expiration date 05/2013).

Please click here to view more detailed information.

Be well!
Maren

Ooops... so it's been 8 months.

So apparently building a home takes up a lot of your time...
It has been a whopping 8 months since I let anyone know how I was doing and I thought it was about time!  Thank you for all of you who have been so sweet to check in on me. 

First off, the house is done and we're moved in!  YeeHaw!  Holy hell was that a production, but we made it, and we're here and loving our new home.  I'll love it even more in a month or so when the yard and landscaping are complete.

I have also since started an in-home part-time job that I love.  The Crafty Collaborative is going great and growing fast!  Rosie is terrific, and we're in the process of searching for a new pup to join our family.  Life has been good.

Not so good though, is how I have been feeling.  Although I tough it out as much as I can, I have been feeling generally pretty crappy since about this time last year. 

Most of this, I believe is due to my fibro, which is commonly aggravated by stress (good or bad), however in more recent months I have been experiencing more weakness in my upper arms.  I have also noticed a couple more Gottron's Papules on my hands, as well as shortness of breath.  This makes me more concerned about where my DM is at, so I have been working super closely with my Rheumatologist to monitor blood work and keep an eye on signs and symptoms.

My regular doctor and I have increased my Neurontin dosage to 300 mg, 3 times a day to attempt to control the fibro symptoms.  I also am working on turning Jay Leno off after the monologue.  Now that is a toughie.  And most definitely after Jimmy Fallon's monologue... Oy vey.

Recent lab work:
No liver, kidney or blood cell count abnormalities.  Muscle enzymes show the normal CK, normal aldolase and a mildly elevated LDH. 

• CK - A common inflammatory marker for myositis or other muscular skeletal diseases.  Normal is good!
• Aldolase - Aldolase is an enzyme that is found throughout the body. It is particularly found in large amounts in muscle tissue.  When the muscle tissue is damaged, the cells break open releasing this enzyme into the blood stream.  So, a normal Aldolase count is good!
• LDH - This test is typically used as a measure of tissue damage in an individual.  Although still elevated, my current LDH is the lowest that it has been since February of 2012.  That's good news!

Next check-up is in July.  We'll decide at that time if a new MRI or other testing is needed depending on how I'm feeling. 

In the meantime, I will be plenty to keep me busy including my new role as a Moderator for the patient support community called Ben's Friends.  I am part of both the Myositis and Fibromyalgia groups and have become a Moderator for the former. 

Although I'm not always feeling super awesome about the changes in my own health, Ben's Friends has certainly changed the relationship that I have with my disease and I feel strongly about the power in connecting with those who face similar challenges.  Sometimes just knowing that you're not alone is the best medicine. 

Just joining the group and seeing that there were other members in it was a huge sense of relief to me.  Increasing my contribution to Ben's Friends is a way to return the favor.

Patients and their friends and families are all welcome, so if you have an interest in connecting with those who may be facing similar challenges with their health, or have similar questions and concerns please join and spread the word!

Thank you for checking in on me! 

I'll try an update before another 8 months has passed.  How's that for commitment?! 

All my best,
Maren

XO

It's Myositis Day!

...okay, yesterday was Myositis Day.  I am still celebrating!

Even though my relationship with my Myositis is heavy on the "hate" side of the whole "love/hate" thing, I still feel very connected to this crazy-ass disease and to others who struggle with it. 

One of the toughest things about dealing with my own diagnosis was not feeling like I had that immediate sense of support simply because none of my friends or family knew what a Myositis was.  I didn't look sick and I was pretty good at toughing it out at first, but as my first major flare took it's toll on my body and my mind, it was then that saw the face of the disease in myself and have been forever changed. 

I now understand the importance of sharing information about these rare diseases.  Awareness helps to flag down funding and research, but it also empowers people to inquire about and ask educated questions about their own health. 

If you would like to learn more, take a peek at some of these great resources:
The Myositis Association
Muscular Distrophy Association: Facts About Inflammatory Myopathies

To a wonderful year, and to our health!
XO, Maren

Another Overdue Update...

So, apparently I like to post in 3-4 month intervals.  Sorry.  

When I reviewed my last post, I couldn't believe that I thought that was a whirlwind.  Things have been tough.  

Just a week and a half after my last post, we very suddenly and unexpectedly had to say "goodbye" to our sweet little Pronto Puppy.  Just days before his doctors had said that he was doing incredibly, and that he should be with us for years to come.  Unfortunately though, he had a blood clot that took him from us far too soon.  

Almost four months have gone by and I miss him every minute.  More than anything though, I am grateful to have had him in my life.  Pronto made my heart so full of love and joy.  He makes me smile every day, even when I'm wiping away tears.  He has my heart, and always will.

The day after having to say goodbye to Pronto, our house sold.  It sold in 5 days.  Warp speed ahead.  

I think that the combination of losing our boy, selling our house the next day, moving out 3 weeks later and moving into a yucky rental, moving out of said yucky rental after 3 weeks and moving into my in-laws house was a little too much for me to handle.  

Needless to say, I flared up.  I haven't been sick since I was really sick about a year and a half ago.  I think that I was so terrified that I would get as bad as I once was, that it just made it worse.  It was awful.  Thankfully, about a month and a half later, I can feel myself slowly coming out of it.  I think that the emotional impact has been worse than the pain.  The fear of returning to that place has been really hard to work through.  

I don't like to admit when I'm not feeling well (partly because the denial [literally] makes me feel better) but when it's been weeks, I think that I owe it to my friends and family to fill them in.  It also can only help when people understand why I may have to skip a get together, sit the whole time, or go home early.  

Rosie and I have been taking a couple little walks each day, keeping my body moving.  Little by little I'm getting back to where I'd like to be.  I have also been having fun and keeping very busy with my new blog, The Crafty Collaborative.  

One thing that reappeared during this flare were my Gottron's Papules.  Just a tiny bit, but they're there.  I haven't had them since I have been posting here, so here's a look.

Can you find them?  

 Here they are!  Just a tiny little cluster of flat bumps on the lower part of my middle finger.  

This little spot is always sort of "there," but not always raised like it is now.  

With the return of my Gottron's Papules, I was concerned that it was my Myositis that was flaring up.  I have felt weakness in my arms and legs, but I also have pain in those places which could indicate that it's the Fibro flaring and not the DM.  

I had a visit with my Rheumatologist and routine bloodwork done and although my C-Reactive Protein was slightly elevated, which is showing some inflammation, my other counts looked okay.  To translate, it looks like the flare is primarily my Fibromyalgia, and not DM.  Phew!!  We'll check again in October to see if there have been any changes and do an MRI if necessary.  The best thing that I can do for myself now is work to keep my spirits up.  Enter house...

We have finally gotten started building our new house!  They dug the hole this past Friday.  We are a little behind schedule, but have officially started down the road to getting home.  Hoping that this exciting time can help me feel a little more upbeat. 

That's all for now.  My heart continues to heal, and I thank God for my wonderful little family every day.  I will give an update after my October appointment.  Hopefully I will be feeling great!

All my best,
Maren

My sweet boy.

I wanted to also share a book that I am reading.  It was recommended to me by the Grief Counselor at the University Veterinary Clinic.  Although it had my crying on the first page, I can already tell that it will be a special part of my healing process.  I wanted to share it with anyone who has lost a special pet, or is just a lover of animals.