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.

A long overdue update from yours truly!

Hello, hello!  It’s April, 2012 and the past 3 months have been a whirlwind!  

When I last posted, I had just learned that a safer drug called Plaquinel wasn’t going to work for me, and therefore had to switch back to Methotrexate (MTX).  It’s been almost 3 months and I have been going back and forth, as to how much I am freaking out about it based on the day.  You might recall that we decided to lower my full dosage in the attempt to see if I could handle going off of the drug entirely for at least a year if we wanted to try to have a baby. 

So yes, I have been freaking out.  Example:  While blow drying my hair and my arms feel tired.  Instead of simply thinking, “I should let Dr. Grandits know.”  I fast forward to “OMG, I can never have kids!”  I am then calling Dr. Grandits to tell her that I need an MRI.  

Dr. Grandits tells me to calm down and head in for my regular lab appointment.

I did have my labs done last week, however had already made the decision to go back to my full dosage of MTX.  My arms have been achey, and I have had Gottron’s Papules reappearing on my hands.  There is no use playing around with the drug that is keeping me healthy when we’re not ready to have a baby right this minute anyway.  I still have a lot of acclimating to do as it is.  I do need to calm down.  So, back to my full dose of MTX.  I never thought I would feel this way, but I am so relieved.  There is nothing scarier to me than going back to where I was just one year ago.  

Other than my medication drama, I have been feeling pretty good.  I still have good days and no-so-good days.  Hopefully the symptoms that started to creep back will soon subside.  

The topic of having a baby is still one that weighs heavily on my mind.  I think about it probably 100 times a day in some way, shape or form.  I worry about not being able to get off MTX for long enough to have a baby.  What if I do get pregnant, but then my disease flares up after they’re born and I can’t take care of the baby?  What if since I’m “sick” that maybe I’m not meant to pass on my genes?  

A couple of weeks ago, one of my doctors gave me the name of a Reproductive Specialist who often deals with patients in similar situations.  Although we are still a few years out from being ready to have kids, my doctor thought that speaking with the specialist might help ease my mind with some good, hard facts.  I agree.  

I am still relatively new to life with DM and Fibro.  A lot could change in the next few years, and there’s no sense worrying about things that I have no control over, or no idea really, how they will be.  Only problem is that I can’t help it.  I am a great worrier.  So, expect to hear about that appointment in the future!

So, what else has been going on?  

2012 started out feeling less than exciting.  For the first time since this whole diagnosis situation I suddenly... had nothing going on.  I was bored.  My doctor appointments were beginning to get more spaced out.  It was the season of hibernation for most of my friends and family.  I was SO bored.  A little depressed, really.  Thinking, “Is this my life now?”  

I spent a lot of time staring into my computer screen looking for entertainment.  Actually, this is where life picks up.  Enter the new excitement, a new blog!  But this blog isn’t like any other blog you’ve read!  WE will be launching our new site in May!  That’s all I’m going to say for now!  I am SO excited - Stay tuned!!

It just feels really great to be a part of something.  I love having a creative outlet and feeling like I’m using my skills again.  I think that I was definitely ready to take on a new project!  

One new project?  How about 3... 

A week before this past Christmas, Brad and I put an offer in on a lovely, wooded one acre lot near our current home.  It was a short sale, and after 4 months we’re land owners!  It’s the spot that we’ll build our next home on!  So now it’s go time!  Hurry up and get our house on the market by May 1st!  This is an instance where not having a job is great - I can pack, rest, pack, rest, and pack some more!  Very exciting and much to do!

Before the house craziness got into full swing, Brad and I did get to sneak away for a nice weekend in Cape Coral, Florida to visit my in-laws.  We had such a nice time; gorgeous weather, and great company!  I am very happy to report this, since many of our friends and family have been asking us if we have had a chance to get away and relax!  

One of the happiest pieces of news that I have to report is that my little Pronto Puppy has been doing fantastic!  His liver is functioning at a normal level and he has been feeling great!  We did switch to some new medicine to help him absorb his B12 and blood proteins.  I love, love, love the U of M Veterinary Hospital.  His doctors are so amazing!  

Both Pronto and Rosie had some teeth pulled in March due to periodontal disease.  They might look like little hillbillies, but are feeling great after ditching those sore teeth!  Don’t worry, they never chew their food anyway!  Haaha!  

So that is the news in the Holzinger house!  Good news all around!  I am so thankful.

Thank you for your continuing thoughts and prayers.  Thank you to all of my wonderful friends and family who are so sweetly adjusting with me to this new version of me.  I love you all so much. 

Maren

Malignancy is associated with dermatomyositis but not polymyositis...great.

Click on the image to see the article.

Myositis: A Misdiagnosed Medical Mystery - ABCNEWS.com

Myositis: A Misdiagnosed Medical Mystery: ABCNEWS.COM

Myositis is mistaken for everything from depression to rheumatoid arthritis.


This clip is still pretty vague, but informative nonetheless!
M

P.S.  Did you know that September 21st is Myositis Day?  Me neither!  The attached link gives resources for contacting your congressional representatives to encourage awareness of the disease.

Hello 2012

With each new year, there is the feeling of starting fresh, saying goodbye to the year past.  Although I am incredibly grateful for 2011, I was excited to welcome 2012.  

They say that your mind forgets pain; I believe this.  It is hard to imagine where I was a year ago today.  Although I still have days that are more difficult than others, it cannot compare to going through those days in the dark; not knowing what was wrong or what to do.  I still get a feeling of panic when I feel pain, or aches; but I know what they are, and that eventually, they will pass.  

I left 2011 trying to begin a new drug called Plaquinel, that would be less aggressive on my body, and allow me to take [possibly] during pregnancy.  There were a few stages of side effects that I needed to pass to know if it was for me.  Unfortunately it wasn’t, so on to plan B. 

People have been known to have taken Methotrexate (MTX - the drug that I currently use to control my DM) for upwards of 20 years.  The only problem that I note to my doctor is, that only gets me to 50; what am I going to do for the rest of my life?  Although there are not any other promising leads for new drugs to treat a myositis on the horizon, it has only been about 20 years since doctors began prescribing MTX to patients with auto-immune diseases.  Those 20 year MTX patients will continue to be documented as they add years to their original 20 - and I can follow that as I work on my 20.  If there’s a problem post-20, then we’ll deal with that later; sort of a “so-far-so-good” theory.  Works for me; especially since I don’t have any other options.  

I have switched to a lower, oral dosage of MTX (I was starting to have serious injection-anxiety).  I was on the equivalent of 10 pills via injection; now I am on 6. We will monitor my levels as I attempt to “maintain” on a lower dose.  If my levels look okay, we’ll move down to 4 pills.  Hopefully I can maintain my levels at this incredibly low dose for two reasons.  Firstly, because it will [hopefully] be easier on my body long-term.  Second, so that if we want to try to have a baby and I need to stop taking MTX all together, it hopefully wouldn’t be such a jolt to my system.  If I did get sick again while off the MTX, at least we know that a 1mL weekly injection should get me healthy and feeling good in time.  

It’s scary, but we’ll just have to cross that bridge when we get there.  For now, I am just adjusting to the medication change and continuing to work on managing the fibro.  One thing at a time!  

Good news with my little Pronto Puppy, his counts are were good, so he got to reduce his dosage of medication, too!  Still running around the house like a pup!  I am feeling good about 2012 as it has gotten off to a good start with a healthy and happy little family!

Much love to you and yours in the New Year!

Maren