Round Two - DING!

It’s been two weeks since my last infusion, and tomorrow I will receive my second round. 

Everything went well the first time. I didn’t die, so that’s a plus, I did wake up about every hour that night just to be sure I was still here.

The infusion lasted exactly 5 hours. I was hopped up on Benadryl and Prednisone, so I could hardly keep my eyes open yet couldn’t fall asleep. I was home and in bed that afternoon and slept for 2 days! Other than being sleepy, I haven’t really felt any better or worse in the past couple of weeks (with the myositis – i.e. weakness, exhaustion), which is just fine. After my second infusion tomorrow I will start to anxiously await feeling any improvement. 

Since the infusion though, I think that my fibro has been flared, which is annoying. I haven’t really had to deal with any fibro stuff since the myositis flare started. I am super forgetful and have pain in my joints from it – I’m scatter-brained and am having a really hard time putting this post together, which is unlike me. I have a feeling that I brought it on myself by over indulging in some foods that have been known to trigger inflammation (i.e. sugar, cheese, tomatoes).
Once I get rolling out of the current myositis flare, I am really going to dive into working on incorporating some of the autoimmune protocol into my diet (more on this later)… if you can’t wait until “later” click here.

Tomorrow the infusion will only be 4 hours, so I’ll be home and in bed by lunchtime. I’m really hoping that tomorrow is the day where this all starts to turn around.

I can’t thank you enough for supporting me through this. Hopefully this will soon be just a memory. Even though I can’t remember what I am supposed to be doing from moment to moment, I have truly appreciated the prayers, FB notes, calls, texts, emails and surprises (both me and my pups have received some really sweet treats from secret admirers that were a very unexpected surprise that we all loved)! 

Once my head is screwed back on straight, I promise that I will return messages and get my sh#t back together to properly thank you all.

Wish me luck tomorrow – I hope that this round goes just as well as the first.

XO, M

November Update

Hello!

It’s almost December and I have to be honest, I’m ready for a New Year. I certainly don’t want to wish away the next month, but I am definitely ready to start feeling better. The past 7-8 months have been a struggle that I am ready to move past.

On Tuesday, I’ll be heading in for a Rituxan infusion, my first of two rounds. This drug is an IV administered infusion with the potential to kick my flare into a remissive state. I will receive two rounds that will last 6 months. The hope is that this drug will give my flare a kick in the ass, and by the time it wears off, my other two immune-suppressing drugs (Methotrexate and Azathioprine) will be fully on board.

My last labs were mostly clear, so it’s likely that my other drugs are starting to work, but after talking about it with my Rheumatologist and my husband, we decided to go ahead with the Rituxan infusion and not wait any longer for the flare to calm down with the other drugs alone. I have quite a few friends in my myositis support groups who have had great success with Rituxan, so I’m hoping that it may be able to help me, too.

11/19/15 Labs
The labs look good. No liver, kidney, or blood cell count abnormalities. The muscle enzymes are normal. The inflammation marker, c-reactive protein, is normal, has been elevated since September. The sedimentation rate remains normal. The blood sugar is mildly elevated.

Since my initial diagnosis in the summer of 2010, I have always felt that I could deal with anything, provided I had all the information that I needed to understand. It’s the unknown that is always the scariest. I have to admit that I am scared. While the worst of the potential side effects of Rituxan are generally reserved for those who have much more serious conditions, such as lymphoma, or are on much greater doses than I, reading “death within 24 hours” is not something I’m used to encountering when I research my medication information. I definitely wondered whether I should check my pants after reading that.

The past months have included some of my darkest moments, where I truly wondered if I could handle any more of this disease. I have felt weak, isolated, and at times like a stranger to even myself. I am ready to move on, and so I am trying to be brave. If this infusion can help me, I know that I need that help now.

Brad will be joining me for the 5 hour infusion and my coworkers have been kind enough to cover my shifts so that I can also have a few days to recover, as it’s not uncommon to have flu-like symptoms for a few days afterwards. I’ve got a new pair of jammies, a season of one of my favorite shows to watch and my pups, who are always the best little nurses a gal could ask for.

I’ll be sure to update when I’m able. I will then have the 2^nd round two weeks from the first. Same scenario, although I may need another season of my show by then!

As always, thank you for your love and support. Sending warm wishes to you and yours. The cool weather and fresh snow outside my window brings a smile to my face and I hope that the same rings true for you!

XO, M

Ode to Prednisone: The A-hole that coined the term, “Love-Hate Relationship”.

Some possible side effects of prednisone:

• Abdominal or stomach pain, cramping or burning – check
• backache – check
• fast, slow, pounding, or irregular heartbeat or pulse – check
• full or round face, neck, or trunk – check
• headache – check
• increased hunger – check
• lower back or side pain – check
• muscle pain or tenderness – check
• muscle wasting or weakness – check
• nausea – check
• nervousness – check
• numbness or tingling in the arms or legs – check
• pain in back, ribs, arms, or legs – check
• red face – check
• shortness of breath – check
• skin rash – check
• sweating – check
• swelling of the fingers, hands, feet, or lower legs – check
• swelling of the stomach area – check
• thinning of the scalp hair – check
• trouble healing – check
• trouble thinking, speaking, or walking – check
• troubled breathing at rest – check
• unusual tiredness or weakness – check
• weight gain – check

The Prednisone "Moon Face"

HOWEVER! This strange drug also gave me the opportunity to get up and out of bed, move around, leave my house, see friends, and have a little bit of “normal” during this flare.
I do wish that I could fit my wedding ring on my finger, but I would rather be able to get out of bed in the morning.

As I have been on Prednisone long term though, I’m not sure if your body gets used to the dosage and requires more the same effect, but I have been feeling almost just about as shitty as before, but with all of the above side effects. I know that the flare is still active since I still have my Dermatomyositis (DM) rashes as well as some new ones. I also have Gottron’s Papules in new places, like my toes. They’re getting so bad on my fingers that sometimes I feel like almost want to rip them off.

I am really struggling with having my heart race while I’m trying to sleep at night, or feel like I’m out of breath just when I’m trying to speak. I also can’t handle gaining anymore weight, because it’s making my body hurt as well as my self-confidence. 

I saw Dr. Grandits yesterday and we decided that it was definitely time to get off that F-er we call Prednisone. We took chest x-rays to make sure that my lungs weren’t being attacked by the DM and thankfully, everything looked good. Thank. God.

Dr. Grandits believes that getting Lyme disease last fall is what activated my Myositis and we know that trying to get off of the Methotrexate (MTX) certainly didn’t help. But if we hadn’t tried, we would always wonder if I could’ve had Maybe Baby on my own or that he/she could have been ours biologically. It’s hard not to wish that I never messed with my medication, but that is all in the past now. Hopefully, it won’t be long before we can look back on this flare as nothing but a memory.

Nearly all of my labs are back from yesterday’s appointment already:

10/15/15 Labs:
The labs that are back are mostly normal. No major organ problems, no liver, kidney, or blood cell count problems.
The inflammation markers are essentially normal (likely due to the prednisone), the c-reactive protein is elevated.
The CK is normal, the LD total is normal.
The chest x-ray is normal, no finding of fibrosis or lung inflammation. Your symptoms are likely prednisone and weight related.
Continue the methotrexate and azathioprine, taper the prednisone as we discussed. 

As mentioned above, I have begun tapering off of the prednisone. Hopefully I’ll be off in less than 2 weeks. I am a little nervous about the flare acting up again, but I just can’t take the effects of the prednisone anymore. I’ll also be increasing my daily Azathiprine (aka Imuran) dosage to take along with my full weekly MTX treatment.

If we can’t get the flare under control by my next appointment in 5 weeks (or even less), we will consider doing a round of IVIG treatments (blood/plasma infusion) or try some other drugs, such as Tocilizumab (which is traditionally used to treat Rheumatoid Arthritis, but the Mayo Clinic is currently doing a study on it with DM patients), Rituximab, an IL6 Inhibitor or Cyclosporine. I really don’t want to have to get IVIG, but at this point I’ll do whatever it takes to get better.

I hypothesized to Dr. Grandits about when you think about getting sick, your body generally wants to rest. Taking Prednisone makes it so you don’t have to rest as much, so essentially it’s going against what your body wants to do to heal. To me, that would make sense as to why being on Prednisone long term is so hard.
Of course, since she is a brilliant doctor who has studied all the ins and outs of chemistry, biology and the way that the body fights disease… I don’t think that she liked my analogy, but nodded to humor me since it seemed to make everything make sense on my end. Haaha.

I can tell that my body is trying to heal though. The past few months have been spent either in the office working, or sitting in bed watching movies. I sleep like I’m dead, wake up and am tired again by 3 in the afternoon. I sit with my husband at the dinner table and struggle to keep my eyes open, then it’s back to bed. God, I can’t wait to get out of this flare.

Will update again soon, and will hopefully be starting to feel better.
M

September Update

I can’t even remember what I’m supposed to write about here. To say that my mind is a little scattered these days is the understatement of the year. If I remember correctly, this is the blog where I tell you how I’m feeling, so I guess I’ll do that!

August came to an end with me feeling a little bit better, but definitely not "Super Maren" like the way I felt on the initial mega dose of prednisone as in my last update. Like many good things, it had to come to an end. I closed out August fully tapered off of prednisone and within 48 hours I was in a full-fledged flare again. Rashes, weakness, the works. UGH!

Thankfully my next rheumatologist appointment was only a matter of days away.

 9/5/15 Lab Results The labs show the liver, kidney, and blood cell counts are good.  The inflammation markers show the sedimentation rate to normal, the c-reactive protein is mildly elevated.  The Anti-nuclear antibody remains positive, the titer has dropped to a lower level. The complements are normal.  The CK and aldolase are normal. The LDH is mildly elevated, was normal last check. 

The inflammation is present in my bloodwork, and definitely present physically. What this means is that my dermatomyositis (DM) is not under control yet with the methotrexate (MTX) alone.
I am out of breath after walking 3 steps, but my lungs sound good. Dr. Grandits said that my DM is just more than likely weakening the muscles in my chest, but I shouldn't be too worried at this time. 

So, until I can get back to baseline, I’m back on a moderate dose of prednisone for about 2 months, as well as a healthy dose of azathioprine (aka Imuran) along with the MTX. We went with azathioprine over a higher does of MTX in hopes that I wouldn't lose any more hair (I'd like to hold that card until the end)!
So far, I am handling the medications pretty well. I am blown up like a balloon and feel like a beached whale, but am otherwise tolerating the drugs well. Thankfully I work from home and my dogs don’t care if my leggings are the only pants that I have that fit.

Brad and I did meet with a high risk pregnancy doctor, however I left that meeting feeling completely defeated and ready to give up and cried the entire way home. I was exhausted to begin with, the meeting took 2 hours and the only positive thing that we left with was knowing that my ovaries aren’t “old” – whatever the hell that means.

This whole time I’ve been thinking that adoption would be a very possible option for us, until the doctor told us that we may not even be approved to adopt with my disease. We were then referred BACK to the first high risk pregnancy clinic that we went to for the genetic counsel which was beyond frustrating. F*ckin’ A!

Whatever. The goal here is to get me healthy first, so that is what we’re focusing on. My personal goal is for one year from now, to be back to baseline and feeling better and stronger than I have in the past 5 years (oh and back to a normal weight). I think that I can do it! Now I just have to wait for my medication to kick in so that I can get moving and get started!

My immediate goal though, is just to get to live a little. The majority of my summer was spent at home on the couch, so I am definitely ready to be feeling better.

This past weekend I was able to join my best girlfriends for a few hours of bachelorette party games and fun at a hotel, I then joined the team that I volunteer with for an afternoon event outside. I was completely exhausted beyond belief by Sunday evening, but getting out and laughing and having fun was totally worth it to me.

Of all the medicine that I’m taking, I need to make sure I have the biggest does of the giggles – there’s just nothing like it, and no one makes me laugh harder than my girlfriends. In fact, I’m still laughing about this past weekend 5 days later. I can’t wait to load up on more smiles in a week when my dear friend ties the knot.

So in a nutshell, feeling pretty crappy on the outside, but happy on the inside. My heart is full. Grateful every single day.

As always, thank you for your love and support. I hope to have made more healing progress by my next post!

M

August Update

Hard to believe that so much happened so fast. It all feels like a blur to me now, but I am in a 100% better place and I feel really good about the plan going forward.

When I last posted, I was in a full on freak out, and rightfully so. In less than a week’s time, I went from feeling exhausted to struggling to lift my arms which was terrifying. Sunday evening, I wrote my Rheumatologist in a panic. I went in for blood work and an exam on Wednesday and an MRI of the upper left arm on Friday.

The blood work surprisingly came back mostly clear, which is believed to be due to the fact that I hadn’t really come down on my Methotrexate (MTX) too much, and was also starting the Plaquenil. The MRI however, showed exactly what I was feeling, which was intense muscular edema (inflammation) of the deltoid muscle, edema in portions of the triceps, infraspinatus, and teres minor muscles (last 2 muscles in the back).

Before the MRI results came in, Dr. Grandits mentioned that the symptoms + blood work results could possibly equal some type of malignancy and thought that we might want to have a CT scan done, but we’re holding off on that now that we’ve seen the scans (for the time being).

As of the Wednesday appointment, I got back on my full dosage of MTX, discontinued the Plaquenil and began a “burst” of Prednisone that will continue for about 2 months. 

I’m about a week and a half in to the Prednisone burst and loving life. While I feel a little like the Incredible Hulk when I’m hungry, I am overcome with a sense of relief as well as this strange thing called “energy” that I haven’t felt in forever!

The best description that I can give for the first few days being on the mega-dose was like being electrocuted back to life like the Bride of Frankenstein! This has since subsided, but it was great for those first few days because it awarded me the opportunity to get out of the house, which I really needed for my mental well-being.

The only bummer now that I have acclimated to the drug a little, is that I have this sort of “ants-in-pants” feeling, but I still can’t do a whole lot physically, especially with my arms (which feel a little like they needed to get a little worse before they could start to get better). Fortunately, there are plenty of 5 minute jobs that I can do around the house when I’m feeling like I need to move.

Almost all of my Dermatomyositis rashes have started to disappear and my Gottron’s Papules are all beginning to calm down as well. (Exhales huge sigh of relief)

It’s not good to be on Prednisone long-term, but it sure feels good for the time being as we work on getting me back to baseline. I haven’t been having the overly-emotional response, but instead have been feeling super-happy and I’ve even been sleeping really well! I do think that a lot of this is the tremendous feeling of relief that I have knowing (and hoping) that the worst is over with. I now know that I pushed it too far and that I need to [remember to] consider myself in the “Maybe Baby” equation.

Our families have been extremely supportive in our decision to focus on my health over producing a grandchild, which feels good. Takes a little pressure off, even though I always knew that they felt that way.

I can’t thank my friends and family enough for their love and support. We’re not out of the woods yet, but I believe that I am headed in the right direction and excited about it.

Will update in a month when I check back in with Dr. Grandits.
Until then, “Thank You” and enjoy the end of summer.

Maren

July Update

Hello again, 

No sugar coating here, the past couple of months have been a b*tch and things have only been getting worse, and fast. Facts first, then the game plan.

5/28/15 Lab Work 

Labs are good. No liver, kidney, or blood cell count abnormalities. So no major organ problems such as inflammation or anemia.

The immune tests show the continued positive Anti-nuclear antibody, the titer has risen to 1:640, was 1:160 in January, the C4 complement has also dropped slightly, was 22 in January, now slightly below normal at 14. The remaining antibody testing is negative. So this can reflect more immune activity as you also experienced with recurring rash and constitutionally not feeling well.
The inflammation markers are okay, the c-reactive protein very slightly up. The vitamin B12, vitamin D, and iron levels are normal.

The muscle enzymes are normal as well. The thyroid is normal.

Will let you know when the send out labs returns. You can hold off on the MRI's for now until that testing returns. Let me know.

Continue the methotrexate at 7 tabs weekly. You could consider switching over to hydroxychloroquine daily and continue tapering the Methotrexate. Hydroxychloroquine is also an immune modifying medication that can be used during pregnancy. You were on it in 2011 for about a month had complaints of diarrhea, stomach upset, and rash. Since all muscle enzymes and major organs are stable could retry but go very slowly. 

UPDATE – I did begin taking Hydroxychloroquine (aka Plaquenil) right after this message. Nausea, headaches and “foggy” mental function started right away, as well as additional skin irritation and new rashes.

6/17/15 Dermatologist Check-In

I cried “Uncle” and got in to see my Dermatologist a couple of weeks early since the burning rashes on my body were making it very tempting for me to rip my skin off. We biopsied my arm and the results were consistent with that of Dermatomyositis (DM).  

I’ve since been back two more times for cortisone injections at the site of some of my more painful Gottron’s Papules and while it does seem to help take some of the sharp pain away, it doesn’t last very long. 

DM rash spreading across chest and upper right arm, & shoulder.

Gottron's Papules on Right Elbow

Gottron's Papules on right knuckles and fingers

DM rash on upper left arm with biopsy location

DM rash over left forearm

DM rash across upper back and over right shoulder and upper arm.

July Updates:
I emailed Dr. Grandits late on Sunday evening, the 19th asking her if she could either get me in the next day, or if I needed to go to the emergency room. I was in a full blown, 5 alarm panic after the weekend that I had.

Thank God Brad was home with me to help with the pups, make me toast and keep me from completely freaking out.

 7/19/15 

Hi Dr. Grandits,
 I’m not doing well right now, and I’m starting to freak out a little.

Aside from my skin rashes worsening despite treatment from my dermatologist including new steroid cream and cortisone injections, my strength is rapidly decreasing in my upper arm and legs, and the weakness is starting to make it hard for me to live my everyday life.

I’m nauseous and lightheaded, and I can’t think straight or get thoughts out like I normally would. I’m easily out of breath and tight in my chest as well, which I think is due to anxiety.
As far as my current taper, I’m at 6 tablets Methotrexate once a week and 1 Plaquenil tablet every other day.

My dermatologist (Dr. Shafer) recommended getting additional medication on board to combat the skin issues rather than working every other week with her to “put a Band-Aid” on the symptoms. I now have Gottron’s Papules on my hands, elbows and knees as well as a full shawl rash around my back, chest and shoulders and purple rashes on my eyes.

Dr. Shaffer suggested speaking to you about Intermuscular Prednisone, Intralesional Kenology or IVIG.

Do you think that any of the above would help me? I’m also wondering if you think I should try to get in to see you this week, or if I should go to the Emergency Room or something?  

I don’t know what to do, but I’m panicking a little.
Any advice is much appreciated.
 Thank you,
Maren 

July 22 Appointment (labs to come):

Fortunately, Dr. Grandits knows me well enough by now to know when I’m being sarcastic or silly, or when shit’s getting real. The latter was true of the tone of my message to her on Sunday evening. She was able to get me in today, provided I hadn’t already gone to the ER.

Dermatomyositis can be scary, and get scary fast, so it’s important not to poke the bear. My symptoms have been a sign that my body is very unhappy and that the disease is starting to gain the upper hand. This rapid decline is not good.

This is not something to mess with, so Maybe Baby or no Maybe Baby, getting back on my full dosage of Methotrexate along with a 5 week blast of Prednisone is really the only logical option here. 
You can’t typically have a baby if you’re dead, and this isn’t something that Brad and I are willing to risk. I’ll be discontinuing the Plaquenil immediately, so maybe I’ll be hungry for something other than plain toast and Coke soon. I will also have an MRI of the upper left arm to track any new tissue damage or inflammation.

I gulped down my first mega-dose of Prednisone with a grin as soon as I got home and will take the remaining 4 pills of my MTX tonight and pray that it all soaks in fast. I can’t wait.

I cried the other day when I read a friend’s post about people not “seeing” her illness and giving her a hard time about her work status and participation in life events. It made me sad, because I miss my old life too. Another thing that I miss… how crappy I felt before starting this taper! 
I just thought to myself, I would give anything to have parts of my old life back, but I would also give anything to feel the level of “crap” that I felt before I started screwing with my medication. I knew what I needed to do.

We do still have an appointment coming up in August with a highly regarded reproductive doctor who specializes in high-risk pregnancies. We’ll see what he says about taking large doses of Prednisone while pregnant. If I seem to respond well to the 5 week treatment, this may be an option for me for pregnancy, and would not require any taper.

BUT, we will see. I am not going through this again and I will not experiment with my health in an attempt to get pregnant only to risk the life of myself and/or the child. I also need to recover from where I’m at now before we can even consider the next step. Right now, Maybe Baby is the last thing on my mind.

So, if you see me in the coming weeks, I likely won’t stand up to greet you, because I might already be worn out for the day. My face might be puffy and swollen; and that’s because of the Prednisone. If my hair looks like crap, it’s because I can’t hold my arms up long enough to style it, and I don’t even care anymore because I’m so tired.

If I don’t call or write you back, it’s because [aside from good intentions] I forgot or I can’t keep track of the 400 Post-It Notes I have everywhere to remind me all the things that I have been forgetting since taking Plaquenil. 

I’m working my way back, but bear with me on the way. I’m also 10,000 times more emotional than usual and it will only get worse with the Prednisone, so if I cry when we’re talking, don’t take it personally... it probably won't be the last time.

While it hasn't always been the case over the last couple of months, I am feeling like I'm in a good place and don't want anyone to worry about me. It does get a little lonely when you can mostly just sit at home, but I'm happy and discovering new ways to find my joy. Brad and I have gotten some good binge-show watching in and my online volunteer work keeps me on my toes. And, I have the cutest little nurses in town, even though sometimes they bark at me for treats.

Thank you to all those who love and support me. I'll post today's labs as soon as they're in. 
XO, M

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.

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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