Surgery and Infusions and Blood Clots, Oh My!

Hello and Happy December!

Clumps of hair in my brush and shower today kindly notified me that 1) Oh, it must be one month from my last infusion and therefore 2) “Oh crap”, I never updated you all after surgery or the infusions! <Cue “Home Alone” face.>

Here we are in December! It’s the most wonderful time of the year! (Except for fall. Haha!)

Here is a recap of the past 2 months:

Shoulder Surgery
Everything went well! Labrum and tear leading into my right bicep was repaired and 4 anchors were placed in my shoulder to create stability (aka Capsular Plication).

I took a different combo of pain medications which not only controlled my pain after surgery, but left me less out of it and feeling great. In return, I was able to take less medication and heal better!

At my first physical therapy (PT) appointment, I learned that I was 8 weeks ahead of schedule on my mobility!
I am now just beginning to prep for strength exercises and while incredibly sore, I have had a 100% different experience this time around, which was a blessing.

Speaking of that first PT appointment…

A Blood Clot
Prior to my first PT appointment, I had been applying heat to a spot on my forearm that was hard and swollen. This started about 2 weeks after surgery.

You may vaguely recall that in March of 2017, I had a blown vein that developed deep bruising and a “small non-occlusive focus of thrombus”. This seemed similar, but got increasingly worse. It eventually felt like a 3 inch “stick” in my arm that had a marble-sized ball on the end. The pressure in my hand was almost too much to bear.

Since I had my first PT appointment in a few days after it got to this point, I decided to plan on going to Urgent Care after the appointment, as long as the PT specialist didn’t say that it was totally normal and something they see all the time.

She had definitely not ever seen anything like it before.

I went straight to Urgent Care after my appointment. An ultrasound revealed a DVT or deep vein thrombosis in my right forearm and a Pulmonary Embolism (PE), which means that a little piece of the clot from my arm had traveled to my lungs.

I was put on blood thinners right away (they watched me take the first one) and given the option of being admitted to the hospital for a week to take 2 pills a day or going home to take 2 pills a day. I wanted to go home.

I then got several lectures on 1) how lucky I was, 2) how major it was that I came in when I did, and 3) how important it is that I not fall and hit my head while on blood thinners.

I was to go home and relax for the weekend until I saw my regular doctor on Monday. The head doctor came in to tell me that everything was going to be fine… but if anything changes, call 911.

So, I freaked out. 100%. Full-blown Freak-Out Fest 2018.  
Brad had been planning to go to the cabin with his dad and brother for the weekend, so my mom came over to stay with me. Brad had only gotten about 30 minutes away before I tearfully called him to come back. Sometimes you just need your mom, and sometimes you just need your husband.
That weekend was tough.

I was able to see my primary physician on Tuesday. The clot was already about half the size it was just days before. I’ll be on blood thinners (Xarelto) for at least 4 months to make sure that it’s completely cleared. More talks about not hitting my head.
She also prescribed more of a muscle relaxer that I had been taking after surgery to help keep my shoulder muscles from making my chest and back tight. This medication (Hydroxyzine) also helps with anxiety, which I clearly needed help with.

I felt a million times better after this appointment. The Urgent Care docs scared the living shit out of me. Not that they weren’t telling me anything that wasn’t true, I just wasn’t prepared to hear it.

I then proceeded to slip on the ice the next day and nearly fall and hit my head… but thankfully the car next to me caught my fall. 😉 
I now wear “snow tire” grippers on the bottom of my shoes. I am ready to follow the doctor’s orders!

Infusions
October and November included my 2^nd round of Rituxan infusions for the year.
I received them both at Mercy Hospital in Coon Rapids. I had a really great experience at this infusion center; a huge relief since scheduling these infusions was really difficult.

Aside from a little more hair loss than usual, I came back from these infusions pretty darn well! I had minimal side effects within the 24 hours after the infusions and no issues with bruising or swelling at the infusion sites.

This was major, since the first infusion was while I was in a sling and the second was a week after I had been diagnosed with the DVT/PE. I needed these infusions to be low-stress for my own sanity and they were. I would even say that I “enjoyed” getting them at Mercy Hospital! It was such a relaxed environment. Love that.

December

Now we’re in December! We made it!

Brad and I hustled this past weekend and got the house all decorated for Christmas and it looks beautiful!
I even wrapped up all our gifts and have them under the tree. This is next level holiday preparedness for this girl!

I think that this speaks volumes for my desire to simply relax and enjoy this season. The past couple of months were a little more than I had bargained for. I am looking forward to soaking up every bit of the holiday magic.

Thank you for not only reading this far, but for your tremendous support! I am so blessed to have such caring friends and family.

Wishing you and yours love, happiness and health this holiday season and in the New Year!

XO, M

Shoulder Surgery Tips & Tricks

Me Again!

This post has nothing to do with Myositis!

These are my tried and true methods for shoulder surgery recovery. I wanted to share this post so that it was out in the webosphere for others who are looking for tips and tricks to get through their recovery.

This will be my second laparoscopic labral repair and capsular plication – meaning a repair of tears on the labrum and adjustment to correct hypermobility. I am not looking forward to going through this procedure and recovery again, yet am glad to get it over with so I can move on with my life with pain-free shoulders that only move as much as they’re supposed to!

Here are the items that got me through one-arm life!

You can view/shop them all here.
Descriptions are listed for each item and as an Amazon Associate, I do earn from qualifying purchases.

1. Don Joy Cryo/Cuff Aircast for shoulder and Gravity Cooler.
You NEED this for your pain control and to keep swelling down. You can use 3 small frozen water bottles inside as your ice and it will stay cold for almost the whole day!




2. Plant Stand - 21" tall, or as tall as shoulder level when seated on a nearby table/stand.
The Cryo/Cuff Gravity-Fed Cooler needs to be at or above your shoulder (or affected area) to keep the cold water in the cuff. I used a plant stand on a nearby table to keep the water in the cuff full and firm, which really helped with comfort and pain control.




3. Travel Neck Pillow
You'll be sleeping sitting up for over a month. Enough said!




4. Mesh Sling
You won't be able to let your arm hang for a couple of weeks. A mesh sling is helpful in the shower, so you don't accidentally try to use your arm.




5. Long handle loofah.
This makes showering a LOT easier. Trust me! 




6. XL T-shirt and iron-on Velcro
Before your procedure, cut open the side of the t-shirt that you will be having surgery on. Iron on small pieces of Velcro along the seam to close.
This will be incredibly helpful for coming home from surgery, since your shoulder will be bandaged up like a linebacker and you won't be able to move your arm for the first time.

I also wore XL t-shirts at home for months after surgery, since it was hard for me to position elbow to get my arm into a smaller sleeve. Bigger shirts/sweatshirts just made dressing easier.




7. Flossing Picks
I am completely against needless waste like this, but you also can't floss with one hand.

If dental hygiene is important to you, these things are really helpful.




8. Bubba 32 oz Tumbler
Less moving is better in the first couple of weeks. This big mug keeps water cold for hours!




9. Hands Free Dog Leash
You will have one arm/hand, but you will likely need to use that for other things that come up on the walk!




10. Playing Card Holder
You won't have the most exciting social life for a couple of months. Games are fun!




11. Non-slip pads

You can't turn your hand to hold your phone or tablet for the first week, so use this to keep it from slipping off a pillow, etc. when propped up in front of you.

12. Mobile work-station
If you're couch-bound, this table with adjusting height helps with elevating your cryocuff cooler, keeping essentials close at all times, or if you're going to attempt to be productive.




13. Light blanket/cloth
These soft cloths helped to keep my shoulder covered when icing and even when sleeping upright.




14. Stool Softener
Because pain killers and pooping don't go hand in hand.




15. Squatty Potty
Opioid pain meds? You need all the help you can get!




16. Meal Prep Containers
I prepped and froze as much as I could prior to my surgery. This was really helpful in having healthy food ready for lunches and for helping my husband with dinner.




17. Cheap Acetaminophen and a lot of it!
No ibuprofen for a while, so you can only take acetaminophen in addition to your pain meds.

 


18. New this year - a Keurig!
I am totally against using the traditional k-cups, however I recently discovered the 100% compostable and very tasty Cameron's brand k-cups! 

One-handed coffee for the win!




Also noteworthy: 

• Pull-on pants with no button
• Zip-up shirts/sweatshirts
• Super stretchy "sleep" bras that don't have to be fastened in the back
• Shampoo, conditioner and soap with pumps! 
• Additional ice packs that have a strap to hold on the shoulder. You can likely get this from the hospital when you are discharged, but here is an example.
• Pillows, pillows and more pillows to help prop you and your arm up as you rest
• Chart to track your medication and when you last took each one
• HELP! Don't be afraid to ask for it. Your family and friends love you and want to do what they can to help you through this recovery.

Lastly, here are the things that I do NOT recommend for shoulder surgery recovery:

1. Spray Deodorant - nope.
You have to lift your arm up even more to spray versus just using a regular stick.

2. Spray Lotion - NO!
I thought this would be super helpful... I was wrong.
Thankfully, I tested the product out prior to my surgery. The lotion got on the tile floor and I almost slipped and fell and broke every bone in my body. If I would have been in a sling, I would have died for sure. 

3. Books
Not because I'm against reading, but because the opioid pain meds make you dizzy. I loaded up my book list before my surgery and could hardly even read my phone.

4. Removable Shower Head
I tried this at first and it just made showering more difficult for me.

5. Unhealthy Snacks
Opioid pain meds basically turn your metabolism off.
I gained 15 pounds of Cheez-Its weight the last time around.



I hope that this post is helpful for anyone who anticipates being in a sling for an extended period of time.
Wishing you the very best in your recovery!

Maren

September Update

Hello there and happy September!

While my next rheumatologist appointment and infusion are not until mid-October, I am checking in now before I once again head in for shoulder surgery.

This will be my second laparoscopic labral repair and capsular plication – meaning a repair of tears on the labrum and adjustment to correct hypermobility. I am not looking forward to going through this procedure and recovery again, yet am glad to get it over with so I can move on with my life with pain-free shoulders that only move as much as they’re supposed to!

I will be having my next infusion while in recovery from my procedure. Unfortunately, Blue Cross has [yet again] made changes to the policies regarding Rituxan and other life-saving drugs, so that they are more difficult to receive.

I can no longer get infusions at United Hospital in St Paul and am not eligible for home infusion. The only place in the state that I can get the infusion currently is at Mercy Hospital in Coon Rapids, so I’ll be hauling my icing pump and set-up there.

I’m anxious about these recent insurance changes, but trying to stay present. There is still one place left and I have my appointments!

Still holding off of Azathioprine and hanging steady. I have struggled with a little fatigue and thigh weakness this summer, but for the most part I improved from my mini flare this past spring! I have still been able to do most of my favorite things!

At my last post in June, I was a couple of months into giving the Autoimmune Protocol (AIP) diet a try to see if it would help alleviate some of my ongoing symptoms.
AIP is similar to paleo in that it is free of grain, dairy and processed food. It also removes inflammatory foods, such as nightshades, sweeteners, coffee and chocolate.
I would say that I was about 90% there and just had to stop. My digestive system just couldn’t handle it and I was miserable.
My body felt amazing and I was sleeping like a rock, but that is where the pros ended for me.

So, I have added back a serving of dairy a day, along with rice and oatmeal. My stomach feels a million times better, but my body doesn’t. I’ll give it another try after I have recovered from my surgery!

Also noteworthy for September: Myositis Awareness Day on the 21^st (although now we get a whole month in May), my 38^th Birthday on the 23^rd and my husband and I celebrate our 11^th Anniversary on the 28^th, so there are a lot of things to be grateful and happy for this month!

Hopefully focusing on these things (and a couple more rounds of golf) will help calm my nerves about my upcoming surgery!


Thank you for your support and love, as always! 
Hope you enjoy my favorite time of year: Fall!
XO, M

Adios Prednisone!

I had a great check-up with my rheumatologist last week!

My counts are the best that they have been in years! I get to discontinue the prednisone and pray that I can hold steady without a flare without it.

A few months into working on the Paleo diet, my glucose is the lowest ever recorded (since 2010). Even my red blood count was at the lowest end of normal, which hasn’t been the case since the beginning of 2016.

MCV (Mean Corpuscular Volume) was the only count that was high, which is the volume in a cell and I have no idea what that even means for me other than it’s been high since the fall of 2015 (which is when I was last on prednisone and had started taking Azathioprine again).

Oh, and no Lyme’s disease (I found a deer tick stuck in my leg a couple of weeks ago), glad that the lab was able to check me out! Those suckers are sneaky!

My rheumatologist was excited about the post-surgery Cheez-it weight that I have lost so far and was super impressed with my current daily step-average.
We talked about scheduling in a little more rest time, sunscreen and my ongoing struggle with walking up stairs.

Trouble with stairs is pretty standard with dermatomyositis and she wasn’t surprised to hear that even when I have been at my best in the past few years, those damn stairs are never easy. That’s okay. I can live with that.

She shared with me that she would really like it if I never used Azathioprine again, as the risk of developing pancreatitis again could be devastating. I agreed, however shared that it’s been tough to have my hands roughen up again and I felt that the timing of my flare was more than a coincidence. 

We discussed keeping a drug called Cellcept in our back pockets for future need. IVIG being an absolute last resort (thank God). 

Cellcept is another immune-suppressing drug that just focuses on a different molecule/protein/antibody (obviously, I forgot the word…) than Azathioprine. I’m not super thrilled about this drug, but we’re running out of options. 

IVIG is an IV immunoglobulin treatment that uses donated and cleaned up blood plasma and it's antibodies to [hopefully] block the immune system’s destruction of muscle cells. There is a pretty high rate of meningitis with IVIG, which can kill people with suppressed immune systems like me, so this is a definite last resort drug. 

She was honest about hoping that I could hold without it, as she worries about keeping my immune system so low all the time. I share her feelings, as I can’t ever seem to hang out with kids without getting a cold that lasts for weeks, which is a huge bummer.

We’re hoping that I can make it to October on Methotrexate alone, and then my next Rituxan infusion will sort of reset my system and set me up for success in the future. I like this plan, even though I’m also terrified of it.

Hopefully, I won’t have to see her until my next infusion in October!
If you don’t hear from me, I’m enjoying the summer and hope that you are, too!

XO, M

Happy Diagnosiversary to Me!

Longest putt to date for my Diagnosiversary - about 40'!

I am so proud to celebrate my 8th Diagnosiversay this year after raising $1125 for myositis awareness and support in the month of May! 

Myositis is often misdiagnosed or undiagnosed, so I choose to celebrate my day! 

This year I was able to spend my diagnosiversary golfing with my husband and having fun with friends.
I felt great and was tremendously grateful to be here!

Thank so to those who stepped up through my fundraiser and to those who have lifted me up and supported me and my family over the past 8 years. 

I really wasn't expecting such a raw and emotional response to donations to my fundraiser, but each one really touched me deeply in my heart. 
My original goal of $380 was blown out of the water with the generosity and love from friends from my past and present. I continue to feel deeply moved as I reflect on these gestures and cannot thank each person enough. 

It was a bittersweet Myositis Awareness Month, as I did begin to flare for the first time since 2015. I guess my body does need Azathioprine after all. 

A few weeks in on prednisone and I am finally starting to feel better, though. I hope that my counts look good at my check-up this week so that I can begin tapering off of this drug.

Each day is truly a gift. Whether you fight through it or you sore through it, we get each one to teach us such valuable lessons and breath life into our souls.

Being in the middle of a flare is so scary. I couldn't even bring myself to talk about it. As I feel myself coming through the other side, I see the value and lessons that it [oddly] adds to my life. It's a strange place to be in, just sitting around waiting to feel better and not knowing if it will get worse.

The scariest thing for me was actually starting prednisone and fearing the dark space that it took me to in 2015. Thankfully, I am not flaring that badly, and I am also not on the same dosage of prednisone. Looking back on that time of my life was hard though.
It makes this diagnosaversary extra special - I am able to look at my history with dermatomyositis and make decisions that I feel good about. I can reflect and reference the past 8 years and this blog as a guide. I don't have to sit on the sidelines with my life passing me by.

I am forever grateful for that scary day in 2010 that became my diagnosaversary!

If you would still like to contribute to Myositis awareness, research and support, visit Understanding Myositis or The Myositis Association.

Thank you from the bottom of my heart for your love and support.
Maren

Home Stretch!

With just 2 days left of Myositis Awareness Month, I’m truly blown away by the support that I have received.

Together we have raised $875 for Myositis Support and Understanding, an organization that not only fights for supportive legislation, but spreads awareness about Myositis and helps families that need financial support for treatment.

I am so proud of our contribution. I made a goal of $380 and we have met that by 230%!

If you would like to help us get to $1000, click here.

Thank you for helping me spread the word about Myositis and for your ongoing support,
Maren