Thursday, June 22, 2017

Oooops! It’s already June!

As par for the coarse, I have completely forgotten to post since March! But, if you know me by now, you know that “no news is [usually] good news”.

Last we spoke, I had just received my last infusion and was a little wiped out from a few minor complications. The area where I had the blown vein is back to normal minus any visible veins – I think that they rerouted!

May was Myositis Awareness Month!
You may recall that as of last year, The Myositis Association decided to dedicate the entire month of May to spreading the word about Myositis (previously we only got one day in September)!
Myositis sucks! I have however, noticed that since my diagnosis in 2010, that there has been a lot more momentum in “marketing”, awareness and research! This is all excellent!
To learn more about this family of diseases, visit

My progress!
To make a REALLY long story short, since my last infusion, I struggled a little with getting back on my feet. Just in the past month, I am really starting to feel awesome again – so that was about a 3+ month turnaround.

I had some oral surgery that (in my opinion) put a lot of stress on my body.
I have a theory (stay with me here) that when someone who relies on immune-suppressants to keep healthy encounters a situation where the body instinctively wants to boost the immune system to fight (like a cold), that the disease that needs to be suppressed isn’t as controlled because the immune system is fighting extra hard. Does that make sense?
I have this theory because ever since my dermatomyositis has under control, and I have a cold, an injury, etc, my muscular symptoms make an appearance. For example, for about a week after my oral surgery, I was having difficulty walking up the stairs. Then, the as the pain subsided, suddenly I was fine once again.
This might not be scientific, but sure sounds right to me!

So, aside from imagined theories, I have been feeling really great!
I saw my new rheumatologist on June first. I get my lab results a little differently now. It’s been a little bit of a learning curve with my new doctor. She is extremely smart and I love her whole body approach to care, but I [unknowingly] was getting a lot of hand-holding with Dr. Grandits.

These rheumatic diseases are f*cking confusing; they’re scary and they’re a pain in the ass.
I can’t even imagine how other people know what the hell is going on with their own care if they aren’t like me, who blogs about their progress (which has become an incredible reference tool for me and my doctors) and who charts all their own labs on a damn spreadsheet so I can ask the right questions about my results each time.
I mean, I need to know what is going on in my body and with my care team. Do other people not need/want to know these things or do they just not have the tools, and then they feel helpless or lost?
Anyway… maybe I’m seeing a future project/”suggestion box” item. Onward!

6/1/17 Labs Everything was within normal range (and even a little bit of an improvement from last time) except the following, which Dr. Meagher said was normal for me and the medication that I’m on:

ALK Phosphatase 50-136 IU/L = 41 (L) 
MCH 26.0-34.0 pg = 34.6 (H) 
MCV 80-100 fL = 102 (H) 
Red Blood Count 4.00-5.20 mil/cu mm = 3.82 (L)

The plan is to continue with a 6 month Rituxan infusion plan (next to be in August). We submitted the request right away to hopefully avoid any delays annnndddddd….. APPROVED!!
Blue Cross approved me through June of 2018, which means that I have my next 2 infusions on schedule. Such an incredible relief. I am SO incredibly thankful.

Today I sit here feeling pretty damn great. I have a little bit of a DM rash situation on my upper back and shoulders and also on my face. My Gottron’s Papules are coming back a little, too – so I need to watch keep an eye on that. I have a dermatologist appointment next month, so hopefully she can help me out a little, since Dr. Meagher doesn’t want me to try the Dapsone again unless it’s absolutely necessary.

I am just so flipping happy to feel good and to be continuing my journey of overall health and wellness.
I still have my limitations, but they are acceptable to me. I have had 7 years now to adjust to needing breaks and my own rest time. I continue to learn how to gauge where I can push myself, and where I need to back off.

Also super exciting news in my world – my Teddy is doing great! No reoccurring tumor causing any trouble for him at this time. We've been plugging away on his bucket list and having lots of fun in the process.
I’m also finally working on my life goal of learning how to golf! I have been building enough strength back (at the damaged muscle tissue sites) to start to play and keep up! I get so damn tired, but I really love it!
I’m so thankful that my job allows me to rest enough during the day, so that I can work on continuing to enjoy an active life, which has been my ultimate dream since my diagnosis.

I still have a little stubborn prednisone tummy to get rid of and muscle to build back, but I am still plugging away and feel so dang happy to be here!
My energy level has been great for me and I have been having a wonderful summer. I have a 5K to walk next month and I'm learning how to kayak in August! I’ve been on cloud 9!

Thank you all for your ongoing support. I feel the love, the prayers and high fives – they warm my heart.
XO, M  

Wednesday, March 8, 2017

Surprise! I had my 3rd round of Rituxan infusions!

Thanks to my insurance approving me for one year of infusions, my recent infusion request went right through!

First infusion on 2/20/17 went very well, and fast – just over 3 hours. I had a pretty bad headache for the next 2 days and after about a week and a half of laying low, felt back to normal.

Second infusion on 3/9/17 went great, too. I did get a blown vein in my left arm though. That sucked.

The infusion center nurse tried to get my one vein twice, on my left arm. Eventually I just couldn’t take how uncomfortable it was, so we switched to my right arm and everything was fine.
The left arm had a blown vein though, which is something new to me.

The day after the infusion, my left arm was a little tender but just felt like a bruise. As the evening approached, my left hand started to feel like pressure was building, and it got really painful. 

After an hour of Googling, I called a nurse line and they wanted me to get to the ER.

I took their advice and headed in (it’s now about 12:45 at night). They did an ultrasound on my neck and arm to look for blood clots.
All was clear, except for a “small non-occlusive focus of thrombus is seen in a superficial tributary of the basilic vein near IV site” in layman’s terms – a clot at the IV site that isn’t cause for concern – other than creating throbbing pain in my hand.

The doctor was a little concerned about any Rituxan being infused outside of the vein. Although – since that infusion site was uncomfortable for me, we switched to my other arm after only a few minutes of the actual infusion. I did message my rheumatologist this morning however, to let her know.

My homework is to alternate hot and cold packs (to help break up the hematoma/bruise), ibuprofen and to elevate my arm. Other than a sore arm, I'm fine - just exhausted from my wild night.

I’m not going to lie though, I’m really wiped out in general and feeling overwhelmed.
I had gotten my life back to a level that I was happy with, and being down for the count for an extended period just highlights what I can’t do without being healthy. It’s a scary feeling to me.

Thankfully, this infusion round is over and I hope to be getting my energy back in the coming weeks. It’s important to me to be able to focus on things other than my disease right now.

My sweet Teddy has cancer and we don’t know how much time we’ll have left with him. The Oncology team at the University of Minnesota Veterinary Medical Center doesn’t think that it will be very long, which breaks my heart.
It’s my goal to help him with his “bucket list” and keep him as happy and comfortable as possible.

So, I hope that I will not need to check in for a while, and that I’ll be able to focus on spending time with my family.

Thank you all so much for your continued support of me and my family. I do gather great strength from your notes and comments. It really warms my heart to hear that you read this blog and that you care.

Thank you,

Tuesday, January 31, 2017

How is it already November January!?

Apparently I forgot to post this update, so I will do my best to fly through and catch up to today!

The past few several months have been a whirlwind. I have had several “pinch me” moments, and have been pretty overwhelmed with moments of reflection and gratitude. 

First things first, the second infusion went very well. No allergic reaction this time. To clarify a statement from my last update, I have always received the Solu-Medrol prior to infusions. The difference was the IV Benadryl versus oral, which made a huge difference.

I was a little tired and “sluggish” feeling for about 4 weeks after the 2nd infusion, but still leaps and bounds ahead of where I was after my very first 2 rounds in December 2015. I was still able to be active, I just got a little more tired at the end of the day and needed a few naps here and there.

I was able to rally and join my Fit Girls Guide “Fit Sisters” for a fun 5K in Chicago the first week in October! I walked the race and felt so great to be there with the friends that I have made during my journey back to health.

It was after the 5K while dancing in Lincoln Park in the rain that it occurred to me that the first week in October of 2015, was when I had reached my greatest low with my flare, the prednisone, and just feeling like I was wasting away.  Looking around I saw the women who have been cheering me on as I first sat down on my stationary recumbent bicycle and could only pedal for 3-5 minutes back in January 2016, and now we were all together, walking, dancing, laughing and having the time of our lives! I caught myself stopping to take it all in, and felt my eyes well up with tears more than once. It was amazing.

In a year’s time, I officially lost the 30+ pounds that I gained in the three months that I was on prednisone, and thanks to the Rituxan infusions that I have received, I feel better than I have in 10 years. You read that correctly. TEN YEARS! That is when my Dermatomyositis symptoms first appeared, however it would be another 4 years before I was diagnosed.

I can now run errands, have fun with friends and exercise! Yes, I do have the occasional set-back, and it does happen; but the bounce-back time is much shorter, and I am now well equipped with the tools (both self-care and medicinal) to get myself back on track in a shorter amount of time. I’m still getting pretty wiped out in the evenings, but hey – if that is what it takes to feel great during the day, I’ll take it!

After being in Chicago, I did get “The Cold” that seemed to affect everyone in the entire universe at the time. For me, with a weakened immune-system, it did take me about 5 weeks to get better. I went through a 3 day prednisone burst and a Z Pac, but it just needed to run an extra-long course with me. Thankfully, it’s gone now! <knock on wood>

My rheumatologist, Dr. Grandits retired at the end of 2016, and I couldn’t be happier for her. She busted her buns for her patients and I am so grateful for the time that I had her as my doctor. Her retirement is very much deserved.

Before Dr. Grandits retired, we decided to have me try a drug called Cyclosporine. This drug can be hard on your kidneys and blood pressure, so you need to be closely monitored while taking it. The reason behind starting this new drug is the ever-lasting quest for something to help control my external/skin symptoms from the inside.

I have tried about every topical steroid and anti-inflammatory cream possible to help control the rashes and Gottron’s Papules to little avail. We have tried drugs including Plaquenil and Dapsone with no luck, so now we try Cyclosporine.
If this medication does the trick though, it would not be a “forever” drug. It would just be taken to hit the reset button on my external symptoms and then discontinued. We discussed it [hopefully] not being taken for more than a year.  I should also notice if it’s doing anything in about 1-2 months.

Dr. Grandits also said that she has another patient who has had success with taking Cyclosporine and Dapsone together. Another with IVIG and Cyclosporine… I am not a fan of going to IVIG route unless my life literally depends on it though, so we’ll cross that bridge if we even get there.

I only made it to about 2 weeks of the initial trial and started to get horrible headaches. I also ended up getting another cold, so I discontinued it all together, since I was too sick to get in to check my blood pressure at the time.

After getting off of the Cyclosporine though, I noticed that there was a dramatic improvement in the Gottron’s Papules on my hands. Major improvements! More on this in a second…

11/17/16 Labs: Since it’s the end of the warmer months, I had Lyme disease bloodwork done because you know, I’m paranoid and Dr. Grandits gets that. Haaha! I also got my flu and pneumonia vaccines and we ran my ANA labs as well.

Since May, my MCH and MCV have both been high, and my Red Blood Count and White Blood Count have been low. This past check-up showed that my ALK Phosphatase was also low. 
I asked Dr. Grandits about these trends and they’re all due to being on immune suppressants. The cells get larger due to the drugs and that makes them slow and stay in the bone marrow or blood stream longer. All of these things made perfect sense to me in November, when I originally wrote this, and now I have no idea what I’m talking about.

My Glucose is also back in the 80s! Labs are good. No liver, kidney, or blood cell count abnormalities except a mildly depressed white cell count.
 The immune testing shows my ongoing positive anti-nuclear antibody, otherwise normal complements and remaining antibody tests are negative.
 Lyme is negative.The thyroid is normal.
The muscle enzymes are completely normal for LDH, aldolase, and CK.

On the dermatology side of things, I’m on an antibiotic to help with a steroid rash that just won’t fricking go away that keeps creeping up from my chest to behind my ears. It is finally starting to get better. Thank goodness.

Other than that, those 2 weeks of Cyclosporine really helped to calm things down a little, so I am tremendously thankful for that.

So, onward to the present day!

I met with my new rheumatologist a week ago and I was so impressed by her knowledge about my “case” and touched by her empathy for the journey that I have been on, moments of heartache and frustrations and all that has been the past 7 years. Since dermatomyositis has just become a part of my life, I often forget the road that my husband and I have traveled to get to the place that we’re at today.

In this initial appointment with Dr. Meagher, we ran through the quick and dirty of all the trial and error, causes and unknowns, tests and specialists. I was impressed by my own level of calm, yet reflecting on it just hours later brought out a little lump in my throat. 

One thing that Dr. Meagher made clear, was that she loved Rituxan, and I agreed! She is concerned with the effects wearing off before getting another infusion, so she would like for me to plan on getting the infusions every 6 months.

As of my last infusion, my insurance said that I was approved for one year, so hopefully I won’t have any trouble getting this next one underway. I got an awful stomach bug over the holidays that I’m still working my way back from (read: exhausted and in bed by 7 every night). She wants to make sure that we get the process started with the infusion, just in case what I’m feeling isn’t the effects of my immune suppressants, but the Rituxan infusion wearing off.

We’re also going to see how this next infusion goes before attempting to try Cyclosporine again. She said that there isn’t a ton of research about the use of Methotrexate, Imuran (Azathioprine) and Rituxan together, let alone adding Cyclosporine to the mix. So, she’d like to see if we can really get on a roll with Rituxan and let it continue to do it’s magic.

Since I was just in, we just checked a couple of labs including the TB test for infusion approval. Everything looked good.

So, hopefully the next time I check in, I’ll be getting my 3rd round(s) of Rituxan infusions. I will keep you posted.

I hope that your 2017 is off to a great start!
Thank you for all the love and support that you have shown me and Brad over the past 7 years.


Friday, August 19, 2016

Mid-Infusion Cycle Check-In


I’m a week and a half from my last infusion and just a few days from my next!

The first week got a little tougher after my last post. The fatigue set in pretty hard, as did that restless feeling in my legs. I tried to walk on the treadmill a little each day to keep any fibro flare from setting in, but it did.

I had some body pains from that, but I think that it also went away pretty quickly due to the clean eating and exercise regimen that I have been doing since the beginning of the year. Even though I felt like eating a bag of cookies and a bottle of Coke, I didn’t! I have learned that sugar is such a huge trigger for me, and the fear of flaring is greater than my desire to over-indulge and pig out when I’m not feeling 100%.

About a week after the first infusion though, I was pretty much back to where I was the week before, which is great since that is what I call the “old new” me! I have felt the best that I have in 10 years, which is something that I have celebrated each day since the changes started to take place.

Friday I was hurting, but just like the magic that has happened with the last infusions, Saturday was an entirely new day. I felt pretty great and even went to hit some golf balls with Brad (something that I haven’t done in 10+ years)! I don’t know how the excitement of feeling healthy again would ever get old. It is the best feeling in the world.

Since my last infusion had a reaction, and I have been feeling a little itchy on and off since, I emailed Dr. Grandits to talk about anything that we might want to change up for Monday’s round:

Hi Dr. Grandits!
 I have my next infusion on Monday the 22nd and just had a couple of questions, since I had a little reaction last week.
 Do you think that it would be beneficial to do the IV Benadryl in the beginning - or just stick with the oral tablet and hold the IV for just in case?
 I also have a friend who has IV Solu-Medrol before her infusions. Is that something that you think would benefit me?
 I am open to whatever - I just am feeling a little nervous about having anything come up.
 Thank you!

(Thank you Amber for that information!)

Dr. Grandits responded:

“Yes I would go with both medications in the IV form, Benadryl and solumedrol, to prevent a reaction. I will inform the nurses to do 25-50 mg IV Benadryl and 40 mg solumedrol prior to your infusion.”

So! From what I learned from my last “trip” with IV Benadryl (just kidding), I will want to eat a BIG breakfast before that medication hits my system, so that I can deal with that feeling of levitating out of the chair a little better. Haha!

These experiences can be a little rough, but they are also powerful information to use in the future. I wish that last round would have been a little better, but now I have that knowledge under my belt, so that I can be better prepared in the future. Hopefully this will help me to stay calm and relaxed on Monday.

To make sure that I’m 100% ready for the infusion, I’m also going to lay pretty low this weekend. Focus on getting my exercise in, getting enough sleep, and getting the right nutrients into my body. Prior to the last infusion, I had eaten some junk food over the weekend and had a few beers. The nurses said that definitely could have dehydrated me a little, so I want to make sure that I’m totally ready to rock and roll.

As always, a million thanks to everyone for their thoughts and prayers and for keeping an eye out for information that could be helpful to me. I really appreciate having such a wonderful team behind me.

I’ll keep you updated as to how Monday goes!