Tuesday, December 4, 2018

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!

October and November included my 2nd 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.


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!



  1. So glad you caught the clot in time! Seriously scary and warranted freak out session;)

  2. Hi Maren,

    I am so glad that I found this post. For the last several years my health has been declining, and my Rheumy has diagnosed me with everything from RA to Lupus. Recently the thigh, hip, upper arm and upper back pain started and now I can barely walk. It's excruciating. That's when the rash showed up on my arms, and spread to my chest and to my jawline. No rash on my eyelids though. I was really starting to think I was losing it. I even stopped going to my doctor because I was sick of complaining about more and more every time I went. But now these added symptoms and yesterday it broke me down. Today I started looking for answers, and I found you. I was on plaquenil for awhile but insurance stopped covering it and it is high. Not taking anything anymore other than a lot of ibuprofen. The muscle pain and weakness started suddenly after a bout of the flu, and has done nothing but get worse. My rash is also hot to the touch, and a combo of itchy/burning. My leg muscles have this wonderful (sarcasm) burning sensation at night. I'm getting wicked sharp headaches, they hurt a lot and my eyes are sensative to light. The fatigue is off the charts. I'm sleeping 14 hours a day and could sleep longer. I'm waking up exhausted. My friend thinks it's MS. Connective tissue test showed negative for MCTD, but positive Ana, which is weird because it's negative in blood work but positive in the connective tissue test. I've been to so many doctors, and the prospect of giving up is becoming easier to take. I'm not sure if I have DM because I lack the heliotrope rash on my eyes, and I doubt I'll be able to convince a doctor to test me. How did you get through the part where no one knew what was wrong??? My kids hate it because I'm no longer even mobile. Walking is very painful. Any advice you could give, or just honest opinions would be great, and thanks in advance. Not sure if it helps but my rash looks a lot like yours.

  3. Hi Nadya,
    Thanks so much for your note!
    I’m sorry that you’ve gone through so much looking for a proper diagnosis.

    My honest recommendation is to get to a reputable Rheumatologist that you trust. There are likely different medications that you could try within the range of your insurance. You shouldn’t have to live in pain.
    If you have a Mayo Clinic in your area, I highly recommend making a visit.
    You might also like to take a peek at the autoimmune protocol diet, to see if you can get some relief from eliminating certain inflammatory foods from your diet.

    DM can present itself in many ways. No two DM patients are alike. I have been lucky to not have had a serious DM rash for over a year, but my hands are a wreck at the moment.

    I will say that the diagnosis stage is definitely the hardest. The waiting and unknown can be so scary. I have found that empowering myself with as much information as possible is my own best defense. I understand that this can be tough when you don’t have a complete diagnosis.

    Thinking of you and hoping that you are feeling better soon.