Playing catch up. A 3 in 1 post.

Hello,

I have been rambling on to myself in little notes and entries that I have never posted, only saved on my desktop and stare at.  I honestly can't look at them anymore, so despite the fact that they're rambling and poorly edited, I share just to let them go!
If you're up for some moderately depressing light reading, this may be right up your alley!

xo
- Maren



February 1, 2015

Hello there 2015!

The year is off to a pretty good start.  While I haven’t been feeling the best ever, I have a lot of great things in place, and am feeling really positive about where 2015 will take me. 


1/22/15 Lab Work 

The labs look better. The Anti-nuclear antibody has dropped to previous level of 1:160, remaining antibodies remain negative. The muscle enzymes are completely normal, especially the LDH has dropped to normal. The thyroid is normal. The vitamin D level looks very good. The inflammation markers are slightly above normal, no real difference from previous levels. The protein levels are normal. The rheumatoid factors are negative.  

C-REACTIVE PROTEIN (<0.50 mg/dL) = 0.74 
SEDIMENTATION RATE (<21 mm/hr) = 22
LD,TOTAL (125-220 IU/L) = 356
ANTINUCLEAR ANTIBODY (ANA),SCREEN (Negative) = Positive
TITER,PATTERN/INTERP (none) = 1:160

Current Life Goals
My FitBit tells me that when I am basically on the verge of death each time I go outside to fill my birdfeeder.  #sickpeopleproblems #onedayatatime #everystepcounts…  I don’t know – am I missing any inspirational hashtags on that one? 
Regardless, it’s basically my weekly intense workout to trek out there in the snow and fill that thing.  So if ever I am missing and presumed dead, one should look to the Eastern side of my yard for me first.

I purchased the FitBit so that I could have another tool for tracking my activity and actions alongside how I feel in the days that follow.  It was no surprise that a few Saturdays ago when I felt the best that I had in months, I took twice as many steps as I had in all days prior since tracking, and subsequently felt twice as exhausted in the 3 weeks afterwards (I’m still in said timeframe).  Damn.

Upper arm and thigh strength has been a real challenge for me, and seems to be getting worse. 

I will be starting a new physical therapy program this week to hopefully gain some strength back that has been absent for far too long.  I still haven’t quite recovered to the strength that I had before we moved into our new home.  It’s been 2 years.  I felt like I was starting to get some momentum back this past spring, but too much fun and not enough self-care ruined that opportunity.  Lyme disease this past Fall official kicked my butt back to square one.  I sure hope that 2015 is the year that I can turn things around.

I have been diligent about pushing myself as much as I can at home.  I have moved from the stationary recumbent bike, to the treadmill where I had made it to walking briskly for 10 minutes before nearly being launched off the back of the treadmill like a clay pigeon (I’m not at 10 this week though, as I have been dealing with a pretty intense flare).  This small feat may be surprising to hear for those who don’t realize how tired my muscles become after a very short period, but this is a major accomplishment for me.  I had been at about 15 minutes of walking last summer, but came to a quick halt when I got Lyme disease. 

Not being able to sustain activity for extended periods has really wreaked havoc on my metabolism as well.  I am sure that my added weight has made it harder to move.  I get so frustrated when I am tired so quickly.  I want to get more exercise, get my muscle tone back and lose some weight; it’s so damn hard…

I never finished this entry.  Things changed quickly; I didn’t know how to pick up without leaving out the record of how I felt at that time. 

_____________________________________________

Fast forward to June 2, 2015

Today I received a notice via Facebook of my blog posting from that same day in 2011.  It was an entry of my “Best News Yet” from June 2, 2011 and it was and still is good news.  It was the moment when my MRIs finally came back clear, showing that my muscle tissue was no longer under direct attack by my immune system.  This was an amazing moment in my story with Dermatomyositis (DM). 

http://marenupdate.blogspot.com/2011/06/best-news-yet.html

As I reread the entry, I couldn’t help but feel disappointed that I didn’t have a better report for 30 year old me, who was so optimistic and excited that day.  Immediately though, I redirected to how I was glad I that I didn’t have worse news to give to my past self.  I hate when I struggle with having a bad attitude. 

The DM is no longer killing my tissue, but I am still unaware as to whether I’ll be able to regain strength in those muscles.  There is still inflammation in my body, but I am currently free of any additional disease such as cancer, my organs are healthy and I am alive. 

I would be lying if I said that at 30 I thought that I would feel the way that I do now at 34.  The June ‘11 entry was not long after my initial diagnosis, so I [naively] thought that by now I would have either gained complete control of my health and feel like a million bucks, or I’d be dead (I was banking on the former). 

While ever-grateful to be alive, I never envisioned the way that I feel today.  I didn’t prepare myself for the most likely scenario, which is this in between place of wellness and illness.  It’s the “meh” place.  Believe me, I know that all things considered I am doing really great; but I don’t feel my best, and I want to feel better.  Is that so much to ask?

My rheumatologist listens to me tell her this and I see in her face the “meh” look right back at me.  It’s the “wait and see” face.  The face that says, “You can’t have it all.”  “You can’t take drugs that keep you healthy and have a baby at the same time.”  “This drug will help this, but make this worse.” 

It’s also the face that reminds me that my disease is rare, so patience is key.  More is learned about Myositis every day and if I could win the lottery I would give millions of dollars to The Myositis Association to help make more breakthroughs for the handful of us out there.  That and buy the lot next to us and a golf cart to drive around in and build an animal sanctuary.  You know, regular lottery money things…

Plugging away at physical therapy is a slow process, but one that I am committed to.  It’s hard to have to move so slow that you can’t just get the results that you want right away.  It’s also hard to walk back up my sloped driveway after a short walk though, so I know that “fast” isn’t an option.

My dog Teddy had back surgery a couple months ago.  While I wish that he never had to go through that, I have enjoyed having a PT partner.  It’s nice to have his company and helping him get better is helping me as well.  Plus, we snuggle afterwards, which is a nice perk.

_____________________________________________

June 6, 2015

How are you? The four part question with an 8 part answer…

It’s hard to be around people when you feel like crap, even though you need those people to help lift you up. 

Ask me, “How are you?”  Did I pause?  If so, it’s because you were not specific enough.  “How are you” is a very specific question with an oddly strategic answer that will give the asker coded information to which they just might get an answer.  Why not just answer the question you ask?  Because this is my own highly evolved passive aggressive coping mechanism, that’s why.

How are you doing or how are you feeling?

The answer to how I’m doing will give insight into my feelings about the world, my feelings of gratitude, happiness, internal peacefulness, love of family and friends, the weather, whether or not I have eaten recently, etc.

The answer to how I’m feeling is the direct route to my health.  I hate this one.  It’s why I write this blog, to avoid it.  I like to live in a fairy land where at any given opportunity, I can pretend like my disease isn’t there, or at least be distracted from it.  While there are so many things to be thankful for in life and in my own experience with DM, it still remains the one thing in my life that brings me down, makes me sad, and scares the living shit out of me and there is very little that I can do about it.

I don’t have the ability to just say, “I’m fine,” and move on.  Sorry.  For those of you who struggle with knowing what to say to someone with an illness, I apologize for not making this any easier.  I’m not sure if it’s the “Minnesota Nice” in me or some kind of guilty conscience that makes me feel like I have to answer everything nicely and with an honest answer or what, but I’m here to tell you that I’m doing my best in my own upside-down way.
 
Here comes the top secret coding. 

1.            Question: “How are you doing?”

               Answer: “I’m great!”

               Translation 1A: “I am alive with a wonderful family and friends who love me.  I am filled with gratitude for the life that I live and am smiling because of all the beauty around me and the love in my heart.”

               Translation 1B: “I am not great, but I don’t know you well enough to care if you know that I’m lying to your face or not.”

2.            Question: “How are you feeling?”

               Answer: “I’m great!”
               Translation 2A: “I really am feeling great and couldn’t be happier!”

               Translation 2B: “I may not feel 100%, but I am happily in denial at the moment and it’s really working for me.”

Note: I really am almost always, “great”!  This is no joke!  And those of you who know me know that it only takes me about 5 minutes to have a new best friend, so 1B is reserved for that person standing in line at the checkout, or a waiter at a restaurant.

3.            Question: “How are you feeling?”

               Answer: “I’m alright.”

               Translation 3A: “I’m struggling, but am fighting through it and staying positive.”

               Translation 3B: “I feel like shit and I don’t want to talk about it.”

You know things are bad when…

 4.           Question: “How are you doing?”

               Answer: “I’m alright.  I’m hanging in there.”
               Translation 4A: “Code Red!  Oversharing!  Mayday!  Answering for “feeling” when the question was “doing”!  Abort ship!  Head home immediately to the safety of sweatpants and ice cream!”

               Translation 4B: There is no 4B. 

#4 is a place where I usually am not, but I’m here now.  #4 is sad, depressing state that is hard to shake and I hate being here.  It’s filled with fear of the unknown and fear of the known.  It’s the constant reminder that I’m not in a good place, whether it be by the way I feel or look, or the thing that I tend to struggle with most, which is who I’m not, who I am no longer and who I may never be. 

This is why I have a counselor.  She helps me to stay on my positive path, but she can’t work miracles and sometimes you just need to work through the feelings that come up.  It’s not always easy to be present in the moment. 

When my hands, elbows, face, chest, shoulders and knees are itching and burning, yet hurt too bad to even touch, and I struggle to walk up the stairs at end of day, it makes it hard for me not to worry about things that are in the future and that I cannot control. 

I think about how this is likely 100% due to my current attempt to taper off of my methotrexate to try and have a baby... and I’m only ¼ of the way there.  What if I can’t handle it and need to give up?  How will I feel knowing that if we can’t have a baby, it will be because of me?  How can I make myself be stronger, or fight harder?
I also want to stay here, for a long time.  I want to know how long it takes for my hair to turn all white, and if Brad ever gets bushy old man eyebrows.  Feeling my illness the way that I have been makes me scared.  DM is scary.

Meanwhile, as I write this, it’s a gorgeous spring morning.  The sun is warm and there's a cool breeze the smells like wild phlox and lilacs.  I’m sitting out on my porch with a cup of coffee and my puppies and a little songbird is signing its heart out just over my shoulder.  It makes my heart happy, and now my eyes are full of tears because I am so truly blessed to be in this moment.  

I love my family and I love being part of this world.  I just want to get back to being me, because feeling sad isn’t who I am.  
I respect the process though.  I have struggled before and I will come out from this experience stronger and more resilient just as I did then. 

So today, I enjoy the fresh breeze in my home, snuggles from my pups and love from my husband.  I have an extra cup of the coffee that I love so much, and maybe even indulge in a little ice cream.  Tomorrow is a new day, and one step closer to coming out on the other side.

XO