Greetings from my personal Snow Globe!

Hello there, 

Apparently another 7 months has gone by!  I'd like to refer to the saying, "Time flies when you're having fun," although I feel like it's more fitting to say that, "Time flies when you make the mistake of blinking."

I write today from my little igloo, 2 feet of snow in my driveway and a husband out of town.  My brother in law will be here to plow a path for me later today, but for now I just enjoy some couch time with the pups and a lovely view.

The photo doesn't even do it justice.  It's sparkling and magical.  

Each snow covered branch, even the tiniest twig is glowing under the sunlight.  

I feel so lucky to be able to enjoy such an incredible display.

On that note, I will cut right to the chase!  The holidays were wonderful, but I barely managed to keep my health in check.  I was exhausted beyond my control, but I survived with a handful of memories for our new home and was still able to thoroughly enjoy the season.  

At my most recent appointment I was in a panic over increased fatigue in my upper arms and thighs and slightly labored breathing.  As per the norm though, my labs came back showing nothing alarming.  A terrible cold the following week relieved me of my fears that my lung function was in jeopardy.   If in the next few months my strength doesn't improve, we'll do another MRI or even a biopsy to be sure there isn't something going on under the surface. 

Recent lab work:
No liver, kidney or blood cell count abnormalities.  LDH is high.
The immune tests show the ANA remains positive, the titer is down to 1:160 from 1:640 so less activity which means medications are working.
The remaining antibodies and the complements are normal.  The inflammation markers show a normal sedimentation rate, which in my case this has always been normal so it does not help us determine how I'm actually doing. 
The C-reactive protein is elevated and does fluctuate with the disease symptoms, it can also be up for other reasons like a sinus issue (which I was just beginning to experience at the time of this blood draw).

I also had a check-up with my Dermatologist in the past month.  The appointment couldn't have come at a better time as my arms were in a full flare for her to see. Oh goody!

Dermatomyositis (DM) is very similar to Lupus in that it can not only bring the beloved Gottron's Papules which I have shared before, but a slew of skin reactions to various and often random things.  

Most recently I have been reacting to hair products, causing blister-like bumps around my hairline and on my neck.  I have also gotten horrible tiny sores on my forearms from hand soaps and even ultra-sensitive face moisturizer.  So weird.  

A quick side note: I almost forgot to tell you about my little friend... yeah right. This friend is an A-hole who goes by the name of "Wart" and he will not get the hell off my foot.  I have had 3 laser treatments and even a small surgery to remove him, but with the immune suppressants that I take, he will not go away!  He laughs at banana peels, duct tape, and salicylic acid.  I could cry.  I just want a damn pedicure.  Hopefully he will be gone by my next update.  

Because of the increase in skin symptoms, I have decided to go back to the injectable Methotrexate (MTX) since I now know that it is better absorbed into the system.  
To [hopefully] avoid the shot anxiety that I had before, I have established a new routine for shots.  

1. Replace ice pack with popsicle or ice cream bar to attempt to form a positive connection to shot time.  If this doesn't work, then I guess it will help me to not eat so many popsicles and ice cream bars.  LOL
2. Move shot day to Monday so I can still drink on Sunday if I want to.  Is more explanation needed?  Haaha!
3. Take shot in the morning to get it over with so I don't spend the entire day dreading it. 

So far, so good!  I have a few weeks under my belt and I am not freaking out quite yet!

My Dermatologist also gave me another topical cream to apply to the sores that I have been getting on my face.  It's called Desonide 0.05% and it works like a charm!

For DM friends, I wanted to share that Cetaphil Gentle Skin Cleanser followed by CeraVe Moisturizing Lotion have really helped to sooth and as well as avoid any issues.  I also use the new Cetaphil Gentle Skin Cleansing Cloths to remove makeup.  

Currently Cetaphil's Gentle Cleansing Bar and Aveeno Baby Soothing Relief Moisture Cream has been working for my body.

If things continue or get worse, my Dermatologist said that we can do some official skin allergy testing, since some preservatives and aromas can aggravate auto-immune skin conditions.  I have found though, that if I just stick to my beloved Aveda hair care products, that the reactions around the hairline subside or are eliminated completely. 

Aside from rashes, a few sores and a little panic, I'm doing pretty great.  Might not sound like it, but you probably know by now that I wouldn't lie to you.  I have been so damn busy that I haven't had too much time to focus on my symptoms; so although my body hasn't been feeling great, I have been able to move my focus elsewhere, which is a good thing.

In case you needed a laugh today, I recently Googled something related to "Dermatomyositis" and when I switched over to the images offered, this is what I saw... 

I never realized that Hypertrichosis was a symptom of DM (It's not, Mom - I'm kidding!) but apparently if my current job doesn't work out, I may have a future in the "Bearded Lady" business.  

Look for me in a circus ring near you! 


Hope that you're all safe and warm today.  As always, thank you for supporting and loving me.

Maren

Time In Tube

Hello there! 

Thought I had better check in before it had been too long again! 

I met with both my primary doctor and rheumatologist in July, which I looked forward to, since I still haven’t felt the way that I would like to since about May of 2012.  Of course, I have good days and bad days, but all in all I am just not satisfied with the way that I generally feel.  There are too many things in my life that I am not doing and I want that to change.  I am fine having to take breaks or moderate for the rest of my life, but not omit nearly fun activities all together.  Thumbs down.

My first visit was with my primary doctor who increased my dosage of Neurontin to help reduce the amount of ibuprofen that I am taking daily since I told her I was convinced that I was getting an ulcer.  Also to take/eat Vitamin K to help with clotting as my bruising has gotten quite a bit worse.

I also shared with her that I have been trying to increase my activity, however have been held back by increased pain that seems to accompany it.  She recommended swim therapy to help me get back to where I want to be physically.  That was that appointment!

Next, I met with my rheumatologist.  This appointment was the yuzh.  No more beating around the bush, I said that the way that I feel is not okay with me.  I also asked if she would concur that it was time that I had another MRI, assuming that my blood work came back “normal” again, because I don’t feel normal.  I just wanted to be sure that everything was okay in there.  You might remember that when I was at my worst, my blood work looked rather similar to how it does now and only the biopsies, EMG and MRI showed how severe the muscular inflammation was.  For whatever reason, not all of my inflammatory markers are always spot on. 

To me, the primary reason for blood work every few months is to watch my other organs for any damage or increased/decreased white blood cells that could signal trouble caused by my medication.  So-far so-good on that front. 

My rheumatologist recommended swim therapy as well!  Very interesting!  So, needless to say, I will be looking into this.  I wish that I would have got on this when we still had a pool…

She also suggested that I take 1000IU of Vitamin D to help with my energy level. 

What the hell, add it to the Weekly Pill Organizer Tray!

Lab Results:

No liver, kidney or blood cell count abnormalities.  Vitamin D level in the normal range but at the low end of normal take Vitamin E to give it a boost.  Muscle enzymes show the normal CK, normal aldolase and a mildly elevated LDH. Thyroid tests normal.  C4 low in January but now back in normal range.

I was also told that the pill form of Methotrexate (MTX)is not always absorbed as well and in its entirety like the injectable MTX.  WHAT?!!  Son-of-a… 

So, I spent my 2 hours in the tube.  MRI for my humorous and femur to check for muscle inflammation.  All went well except for a wicked hip cramp towards the end. 

Time in the tube.  Just a girl and her thoughts.  Thinking about how validating it would be to have inflammation, “I told you so!”  How depressing it would be if there isn’t any inflammation, “You are really that out of shape.”  Oh yeah, and how happy I will be if there is no inflammation because that means that I’m healthy.  How I’ll freak out if there is inflammation because that means that I will go back on my MTX injection and start having a panic attack just thinking about it….Ahhhgg!!

Deep breaths.

Results are in.  No muscle inflammation!  I am healthy and seriously out of shape!  Slightly modified happy dance! 

Some other findings in my MRI, a ganglion cyst (cyst that comes off joints or tendons and filled with synovial fluid) attached to one of my left rotator cuff tendons.  WTH?  These are “innocent cysts,” however I have noticed that my left arm has been falling asleep lately.  After a quick Google, I learned that these often accompany a tear in the rotator cuff, which I did do back in High School…on the other arm.  Not to mention, this hasn’t been noticed in any of my last MRIs so who knows where the H this came from.  I hope it just goes away.

Also found in the MRI, wait for it, a stress fracture in my femur.  What???!!!  (don't worry - my leg feels fine)

My Dr. suggested it be from running or a recent fall... Running?!!  Have we met?  I don't ru...Oh.  Wait.  Yes, I did run.  Just the week before, down my street in rubber wellie boots as fast as I could after Runaway Teddy!  Apparently wearing tennis shoes is more suitable for these types of activities. 

In other news, we have finished our house, our yard and added a furry little member to our family, Teddy.  He is a dachshund, a “tweenie” and is a big, bashful, handsome boy.  We love him.  He makes me laugh and smile, which is always welcome!  Teddy also likes to run away and swallow live frogs whole.  We’re working on it.

Rosie likes the company, but is still playing hard to get.  I catch them snuggling together out on the deck. 

The Crafty Collaborative is exploding with traffic and I am super excited to begin exploring new avenues for the group.  We have been doing all kinds of fun projects and whipping up a lot of delicious treats!

My job is also great and I am happy to be part of such a great team.  Brad and I continue to get settled into our new home and are really enjoying our new space!

So, time to figure out how to get myself into a swim therapy class!  I am mentally ready to really tackle my physical state, especially now that I know that I won't be hurting myself if I push a little harder. 

Hoping to have great things to report next time!

Thank you for caring about me and my progress.  Being surrounded by so many people who care about me is truly incredible.

XO, Maren

 

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