The Hap-Happiest Season of All...

I was tempted to title this post “Winning,” but just couldn’t do it.  Since I last wrote, my diabolical plan seemed to have worked!  Completely ignore being sick, to actually cease being sick.  

The past few months have been great.  I have felt great physically and mentally, which I have learned is equally if not even more important.  The incredible thing, is that what I had felt, was being miraculously mirrored inside of my body.  

Just a couple of weeks ago I began a series of appointments to prepare for a important check in with my rheumatologist.  This appointment would determine if I could begin the journey to switch to a safer, long-term medication to control my myositis.  My first appointment was the super fun 2 hour session in the MRI, the next was a blood work series - that’s no big deal.  It was the 2 letters that came the following week that had me speechless (I know!) and in tears.  Ready?!  There is absolutely NO muscular inflammation left in my body.  My counts had finally dropped; several into normal ranges, even the never-going-to-change ANA* dropped 2 entire levels!!!  That means that there are less antibodies around in my body - that’s good!  I can feel this, too.  I can blow dry my hair without having to drop my arms and rest.  I can run up and down the stairs without a second thought.  It’s amazing.

My mind is a whirlwind thinking of all the things that must have been going on in my body the past year; our bodies are truly the most incredible machine. 

So what happens next?  I just started my 6-12 week “side effect trial” of Hydroxycloriquine, or Plaquinil, an anti-malarial drug that has been found to more safely treat several auto-immune diseases more long term.  Watching for the possible side effects is a little daunting; Week 1: gastrointestinal [oooh, that sounds like fun], Week 2-4: rashes, Week 4-8: hair loss.  As much fun as the aforementioned sounds, I am excited for the idea of moving to a safer drug.  And yes, I could become pregnant on this medication.  

I am a little scared about switching though.  Amazing things have happened over the past year on Methotrexate.  What if Plaquinil doesn’t control the disease and I move backwards?  I guess that’s why I’m doing this now; I’m still on medical leave, now is the time to discover how to be healthy long term.  Hoping that this medication is kind to me and that I can have success with it.  

So why did I sort of want to call this post “Winning?”  I has been a fun month!  Not only did I get the incredible news about my health, but I had a couple other mood boosters as well.  I took home my first win at VINGO night (Bingo at the local VFW) - which was just as great of feeling as I had always imagined... Haahaha!  Topping even that victory, the Holzingers finally took home the Golden Bean Trophy at the 4th Annual Chili Cook-Off (an event that we hold with our college pals).  

My little Pronto Puppy has been feeling great too!  His liver values have come down, considerably.  He was able to discontinue taking Prednisone and has been bouncing around the house like a pup again!  We are so excited to see him feeling better!  

So much to be thankful for this time of year and always!  I am so grateful for all the love and support from my wonderful family and friends!  A joyous holiday season to you all!

Will check in again around the New Year!

Much love, 

Maren

* ANA = Anti-nuclear antibody - which indicates an auto-immune disease is present in the body

Greetings from August!

Hi there, 

It's been a crazy couple of months!  I haven't been writing because I'm convinced that I'm fine and haven't wanted to return to the "sick" talk.  The word has actually been banned from my vocabulary - however I might have to use it a couple times here.  

So, I'm feeling great!  I was not however, ready to return to work full time though; so my position had to be released.  I'm okay with it; although there has been so much going on maybe I haven't let it sink in.  

Physical therapy continues to go well.  I'm not ready to hop on my bike yet, but I can do so much more than I could just a couple of months ago.  I can stand for extended periods and walk where I want to walk! I can be out and about for 5-6-7 hours without flaring up.  I got to see U2 in concert and danced in my spot the whole time (okay, that one landed me on the couch for the next day).

I have had a bit of heartache in July, although so much to be thankful for as well.  Anyone who knows me knows how much I love our dogs, Pronto and Rosie.  On the 4th Pronto got really ill.  He was diagnosed with an auto immune disease [just like his momma] called Chronic Active Hepatitis (CAH).  The doctors think that he ate something toxic as well which triggered the disease; so you can imagine our relief when Rosie's tests came back clear.  

His little liver is feeling better though with the help of Ursodial, Milk Thistle, Prednisone and Azathioprine - which it the same drug that I began my treatment with (except his tastes like chicken!)  We have been working with the amazing veterinarians at the University of Minnesota, where Pronto is a much loved patient.  We continue to pray for his health, and I make sure that I give him lots of the same love that he gave to me when I didn't feel good.  

Amidst all of the above, my grandmother passed away.  She became sick on July 11th and was gone the 17th.  We were lucky to have her here for 97 years and she was adored every minute of them.  I am beyond blessed to have had her in my life.  I had the pleasure of celebrating her life earlier this week with all of my family.  My heart is so full of happiness, love, and truly special memories.

As for me, just today I increased my Neurontin to 6 pills a day.  Previously, I was taking 4 at bedtime.  Now I will take 3 in the morning and 3 at bedtime.  I did feel a little sleepy this morning...but I might just still be a little tired from being out with my cousins on Monday night!

I head in for a check in with my rheumatologist tomorrow.  Per our last visit, she mentioned wanting me to stick with the Methotrexate (MTX) for at least a year before switching me to Plaquenil.  November marks one year of MTX, so I’m pretty pumped to think that I might be done giving myself the weekly injections (which oddly seem to be getting more difficult to give myself) in the near future.

As mentioned, I'm really working on living my life without a thought of the diseases that grace my medical records.  I'm completely sick of "being sick."  So I'm not anymore :-)    That’s it.  I couldn't be happier about it.  Having said that, I'm officially on vacation from the blog!  No news is good news!  

I’ll check in from time to time, but in between notes, think of me feeling great.  Still learning how to live with the little things here and there that make my life just a little bit different than it once was, but shifting the focus from a life that revolves around a disease to a disease that fits into my life.  Pronto’s working on this too, so I have a buddy :-)

Lots of love and thanks to you, 

M

Checking in!

Hello friends, 

It has been a little too long since I have posted an update so here we go!

I am excited to report that I have been making big strides in getting back to my old self.  I am up to being out and about for 3-4 hours without flaring up.  With each small increase in time, I have had to learn a little bit the hard way, but it has been worth it.  I am also getting used to the modifications that I learned at Mayo to make the most of the time that I have both in and out of the house, and also to prevent flares.  

I have been in physical therapy for almost 3 weeks now.  I have had a little trouble with pain in my hips; but other than that, it's going great!  Still having a hard time standing for extended periods, but stairs are no longer a problem and I don't think twice about missing a close parking spot!  I can't tell you how good it feels just to be moving around.  I danced at a friend's wedding last night, and I even wore heels for the first time in probably 8 or 9 months; so great!  

I am pretty wiped out today; but like I mentioned, it's worth it!  There is really nothing like being out and "feeling" like everything is fine.  It's so great just to have fun and not worry about being sick.  I honestly am believing that I'm not, which may be my most powerful weapon.  I don't even want the work "sick" in my vocabulary anymore, I've moved on! 

I check in this coming week with my regular Dr. to see if she still wants to increase my dosage of Neurontin.  If she thinks that we can stop, than I'm closer to being able to possibly switch from Methotrexate to the much safer Plaquenil.  Even though I hate taking my shot each week, I am really anxious to stop the MTX since it has been making me get better.  I would imagine that I will continue to be watched closely whenever we do try to make a switch, but I do have my concerns. 

So, the real test to see whether I over did it or not at the wedding last night will be if I am still wiped out tomorrow, and even possibly the next day.  I have a good feeling though.  In the past when I have done too much, I felt really rotten then next day, whereas today I just feel tired.  Fingers crossed!

Looking forward to some sunny weather this coming week!  Safe travels to those cabin-bound for the 4th!  

As always, thank you for all the positivity and prayers; it means the world to me!  

XO, M

Starting Physical Therapy

Hello!

Just a quick note to let you know that I have been cleared for physical therapy by my Rheumatologist; first day is tomorrow!  I'll be working with the Sister Kenny Rehabilitation Institute.

Now that the MRI's show that my legs are better and that my arms are close behind; I'm ready to build back strength at a more aggressive rate.  Since the disease is in a "retreat" state, this is the perfect time to begin building back up the muscle tissue that was damaged and/or killed.  The disease does whatever the hell it wants, but having more strength will help me to face flares as they might present themselves in the future.

How I have been feeling and what the recent MRI confirmed: I have been able to walk quickly up the stairs without pain and without muscle fatigue.  My arms still get that "exhausted" feeling, but not nearly as bad as it was just a month ago.  It's truly amazing.  Today I held my girlfriends baby for about 5 minutes and didn't even bat an eye.

Although I still flare up, the days in between continue to increase and my attitude is right behind it, which is worth more than you know.  I'm pretty pumped for PT.  To me it's another big step in getting back to my old life.  

I'll keep you posted on how it goes tomorrow!

M