July Update

Hello and happy April July!

April brought me to Florida to visit my in-laws and to the hospital for 2 rounds of Rituxan infusions.
I got to experience both warm, 70⁰F days and another historic Minnesota blizzard in the same week!

Both infusions went well, but soon after I found myself tending to a broken heart as our sweet pupper, Teddy passed away in May. 

We got 2 and a half years of #BonusTeddyTime after his aggressive cancer diagnosis, which was the greatest gift I could have ever asked for. As anyone who has loved a dog knows, it could have never been enough time. I miss him terribly. 

I had a check-in with my rheumatologist in June and have admittedly been a little on guard since. My CK levels came back elevated for the first time in five years and I have been feeling exhausted.

There is a slight chance that the slightly elevated CK could be from “normal” muscle inflammation from exercise, since I have been going to Pilates class 2-3 times a week, but I’m not sure if that is the case. 

We’ll recheck in a couple of weeks to see if it has improved. I don’t even want to think about the what ifs, but it’s hard not to.

I will update as I learn more, but no news is [generally] good news when it comes to this blog!
Next infusion isn’t until October, so here’s to a wonderful summer! 🌞

XO, M

Q & A

As this blog reaches out to more people (roughly 2,000-3,000 per month and from readers all over the world), I find myself getting more and more of the same kinds of questions. 
I thought that I would write up a quick Q&A of some of the reoccurring questions that I get! 

I also really recommend that you use the search feature in the upper left corner of this blog. 
This is where you can search by keyword to find posts about all of the questions above when I wrote them, so you will get a lot more in-depth info. I am certain it will be helpful. 

I’m always happy to respond to messages and comments, however I’m not always super quick with my turnaround, so I hope that this helps!

Here we go!

Would you mind sharing how you came to a final diagnosis?
My diagnosing factors were a muscle biopsy, skin biopsy, EKG and MRI that all showed dermatomyositis in the tissue. I also had a positive ANA.


My ANA came up positive in a speckled pattern, was yours? Did you have specific antibodies? 

I had a speckled pattern ANA, but that doesn't specifically show Dermatomyositis (DM). The DM was clear as day on my biopsies and MRIs. A mixed connective tissue disease is pretty common when there are a few things going on. 

I have been told that no two DM patients are alike. DM can present itself in a variety of ways both symptomatically and internally. Some DM patients have no symptoms at all other than labs that indicate the disease. 


Do you have a high ANA? 
Yes, I do! 1:640 speckled pattern, to be exact. 

The ANA test is a simple screening test to look for antibodies in the blood that are attacking proteins in the nucleus. A limitation of the ANA test is that it does not identify which protein the antibodies are attacking in the nucleus. It just indicates that there are antibodies in the blood against proteins in the nucleus.

Your ANA is just a number that indicates that there is autoimmune disease in the body. They do tend to be large numbers, but having a larger number doesn't necessarily mean that it's "worse". 

This number may be slightly different with different testing methods, but will pretty much always be the same. 

For the ANA test, 1 part of the serum is diluted into 40 parts of diluent (called a “1:40” titre). This diluted sample is tested for the presence of ANA antibodies. If the test is positive, a new sample is made at half the strength (1:80) and tested for the presence of ANA. The test is repeated every time it is positive by diluting the sample to 1:160, 1:320, 1:640, 1:1280, and finally 1:2560.

Read more here. 


How did you get through the diagnosis process, where no one knew what was wrong?
The diagnosis process can be very hard since it’s difficult to stay present among the unlimited possibilities. The unknown is always the scariest. Staying focused on the positive, the present and the facts that I do know is what has worked for me.

I began seeing a therapist immediately after diagnosis. It can be hard to go through all of the emotions of the diagnosis process and absorbing the facts surrounding the disease and how it may or is affecting your life. 

I certainly talked with my husband, family and friends about what I felt; but I also recognized that they were dealing with their own fears and emotions about my diagnosis as well, so I wanted to have a place where I could vent and take a little of the load off of them. 
I also wanted to have someone help me navigate my feelings and help give me tools to process the information and not let it steal my joy. 

This may not be the answer for everyone, but it is what worked for me! 


Did your knuckles change? Flat topped, thicker skin, purple underneath on the joint?
I do have "mechanic's hands" and Gottron's Papules on my fingers and knuckles and occasionally on my knees, elbows, toes. The Gottron’s papules were what actually led to my initial diagnosis.  

They kind of suck, sometimes hurt and always itch. Fortunately, I only have them on a few fingers at the moment. I use a compounded topical Triamcinolone 1% (steroid) cream in a Versa base (I’m allergic to the regular pharmacy version). It helps, but doesn’t make them completely go away. 

I was told that [I think it was] Plaquenil helps more with the skin symptoms of DM, however Plaquenil hasn’t worked for me in the past. 

Sunscreen helps prevent and protect me from all of my potential skin symptoms. My favorite brand is Supergoop, since it works really well for me and is the least irritating to my skin. 


Have you tried Cellcept?
I have not tried Cellcept yet, but it is the next drug in line if I need to add anything. 
I will say that it took me a few years to settle into drugs that were working for me and then added Rituxan a couple of years ago and that is what really did the trick! 

I wouldn't be where I'm at today if I didn't demand to keep trying, as being "okay" was not good enough for me. I wanted to feel great! 


How do you avoid flares due to the effects of sun and stress?  
Diet affects me greatly. Too much sugar, dairy and processed grains make my body feel like lead and increase fatigue. 

I have tried the Autoimmune Protocol (AIP) and also an Anti-Inflammatory Diet, and seem to do best with a somewhat modified combination of the two. I do recommend starting with AIP for at least a month to see how it affects you. I learned a lot from doing it for a few months last year. 
For a list of books that I use to eat/live AIP (or AIPish Haha) visit Maren.link/TheMarenUpdate

I try to avoid being directly in the sun for extended periods of time and always wear sunscreen. Supergoop is my favorite brand.
I also have quite a bit of sun protective clothing. I like Coolibar and LL Bean. All of my golf clothes have protection as well. 

My best tip is to keep an SPF rated scarf/blanket (they have them at Coolibar) in your bag so that if the sun is intense, you can always cover up your arms when driving, or a spot on your body that the sun may be hitting if you’re sitting outside.

Stress is huge. I see a counselor to vent and complain. Ha! This particular "method" works for me, as it helps me to keep positivity at the forefront of my everyday life, which is everything to me. 

I also plan for time to relax and/or meditate each day to help calm my busy mind and rest my body.
It has taken years to adjust, but my husband and I are finally used to my “schedule” of needing to rest and recover throughout a busy week or day. 


What are the best exercises for rebuilding gently? I read that you golfed and seemed to have an active life, being normal again. 
After my first flare, I learned some really great exercises at the Mayo Clinic and then went to physical therapy to work on strength and mobility. I still use a lot of these techniques today, just to keep moving. 
A recumbent bicycle and gentle yoga are what I used to start slowing gaining back muscle strength after my last major flare. I was too weak to walk, so sitting at the bike was perfect. 
There are a lot of gentle and chronic pain yoga videos online. I love a couple of DVDs - Yoga: Gentle Practice and Healing Yoga: Common Conditions. 

For the items that I have used to slowly and gently build back strength after flares, visit Maren.link/TheMarenUpdate

As long as I’m allowing time to rest and pace myself (which includes being able to work from home), I am able to use the “spoons” that I have each day for things that I love to do. For example: I know that if I’m going to golf one day that I can’t also run errands or work out.  

This has taken a long time to adjust to, but it’s how I’m able to live that “normal” life. 
Also, getting the Rituxan infusions is what finally got me over that hump, where I have enough energy to be active in general. 


Where do you find support online, or meet other people with Myositis? 
I have been a member (and previously a moderator) of Ben’s Friends (BF) for years. 
While other groups have quite the voice and presence, the Myositis group within the BF community seems to be one of the quietest. Facebook continues to be the greatest source of support groups for DM and other Myositis diseases, in my opinion.
I’m not super active in the online communities these days, but I like to utilize the search feature in Facebook groups to look for commonalities to questions that come up. 
It’s nice to hear about how various things worked (or didn’t work) for others in the same situation or how different experiences or symptoms presented themselves. 

Here are some that I belong to: 
Myositis Support and Understanding
Dermatomyositis and Polymyositis Patients
Myositis “Ramblers” Keep in Touch Group
Support for Dermatomyositis and Polymyositis Patients
Dermatomyositis
Brandt the Bionic Warrior
Caregiver Support Community
Myositis Smiles

By sharing my own story, I have also found people in my own life who have experience with Myositis. I have even met other patients! It’s crazy how a rare and uncommon condition can spread out its feelers and affect so many people.


What have you taken for flares?
As much as we want to avoid aggressive drugs, a flare is not something to take lightly. The goal is to calm the flare as quickly as possible. Flares can decide to go south quickly, so being prepared with a plan that you and your rheumatologist feel good about is critical and can save your life. 

Prednisone is really tough on the body, but it can also save your life. It's good to take when needed, but in my opinion, as well as my rheumatologist - it's also best to get off of it as soon as you can. 

There are other supportive care drugs that your rheumatologist can recommend to help your body rest, including pain medications, sleep aids, appetite and nausea meds and more. This is a “Don’t be a hero” example. The goal is to nurture your body and get out of the flare. 

When you flare, your body is begging for rest, so give it that gift. 
Rest. Put good foods into your body. Try to reduce and eliminate stress. Get gentle exercise when you can. Let people who love you help you. 


Does Fibromyalgia still affect you? 
Diet, exercise and Gabapentin have helped make Fibromyalgia one of the least of my concerns. If I eat poorly or don't move enough however, I feel it.

Thankfully, I have learned how to manage it for the most part over the years through a lot of trial and error. If I'm doing everything that I can to be healthy, it generally doesn't give me too much trouble.


Can you get pregnant? 
Yes and no. Plaquenil is a safe immune-suppressant that you can take while pregnant. 

I have taken Plaquenil in the past, but it unfortunately did not work for me. In fact, the last (and worst) flare that I had in 2015 was when I attempted to taper off Methotrexate (MTX) to see if we could get through the 2 month post-MTX pregnancy period to either try for a baby, or if anything, harvest eggs for a surrogate. 

I didn’t make it very far into the taper process before the flare began, which took 6-8 months to come back from, and an additional 4 months for strength and mobility. My husband and I decided that we would not continue to try for a biological child. 

It’s extremely dangerous to get pregnant while on immune-suppressants such as MTX. It’s also very risky to have a pregnancy with Azathioprine (Imuran) or Mycophenolate (Cellcept). 
With MTX, if you don’t lose the baby within a matter of weeks, the child is extremely susceptible to devastating birth defects and a dangerous pregnancy. 

Aside from drugs, one important key to keeping a flare away is being able to rest and pace yourself through life’s daily tasks and activities. Some days I feel like I can do anything, while most days I really need that rest and recovery time. 

This is a little bit of a sensitive subject for me, but sharing info that could help someone is more important to me than my feelings. I just ask that people please be gentle with me when talking about the future of our family. 


I am scared that my rheumatologist will want me to take methotrexate. Have you taken this drug?
I have also been taking methotrexate (MTX) for about 9 years. It's a safe drug to use with minimal side effects. I started with the full dose of pills at once, then tried the injection, but those options didn't work for me; now I take 1/2 the dose on Sunday night before bed and the other half on Monday morning. 

Being sick is worse than dealing with some minor side effects, in my opinion. You have to weigh the pros and the cons and consider your quality of life. There have been a lot of things that I have been afraid of over the years since I was diagnosed, but there is nothing that scares me more than not being to live and enjoy my life.


I hope that the aforementioned info has been helpful! 

Please feel free to tag on any questions that I may have missed in the comments. 

M

Clot schmot - aka February Update!

Hello there and happy New Year from snowy Minnesota! 

2019 is off to a great start, so I thought I better share the good news!
The DVT and PE have left the building! No more clots and therefore no more blood thinners (thank God).

Taking those blood thinners was giving me a complex.
All I could think about was not wiping out on the ice (which is everywhere) and I was super paranoid to just live my life.
I’m glad that I don’t have to worry about it anymore and I can just slip and fall in a parking lot, like every other Minnesotan.

I also had a recheck MRI of my pancreas and liver. I'm happy to report that the pancreatitis that I got last spring taking Azathioprine is gone!
My Gastroenterologist was also thrilled to tell me that my little FNH liver friend has not changed, so it’ll likely just hang with me forever in there with little to no threat of ever causing any trouble. Wooot!

So, a very positive MRI and ultrasound to start the year off right!

I had my quarterly check-up with my Rheumatologist last week, which also was very positive.
My ALT is mildly elevated, which is no cause for alarm, but worth noting.

“Alanine aminotransferase (ALT) is an enzyme found inside liver cells. Liverenzymes, including ALT, help your liver break down proteins to make them easierfor your body to absorb.”

More than likely, an elevated ALT would be due to my medications, but it’s another reason to eat healthy and take care of my body to do my part. My Rheumatologist recommended avoiding drinking too much alcohol, which isn’t really an issue for me, but gives me reason to avoid if not totally “necessary” (“necessary” is definitely not the right word to use).

I am about to embark on the 21 Day Sugar Detox to help kick my deplorable sugar habit. This program serves as a jumpstart to getting back on the Autoimmune Protocol (AIP).
I know that eating AIP is good for my body and helps me to feel my best, so I’m getting back on that train. 
Visit Maren.link/TheMarenUpdate if you'd like to see the associated program books. 

My shoulder is doing great!
PT includes lots of stretching and adding more weight to exercises. I feel like I’m still a solid 2 months ahead of healing schedule from my experience on the other shoulder, which gives me great hope for golf season!

Lastly, I’m due for my Rituxan infusions this month and praying that the approvals go through and I can continue to receive infusions at the new location (previously the only approved location). Until I have those infusions scheduled, I’m a little anxious but optimistic that I can stay on track with my treatment.

I hope that your year is also off to a great start!
Today is Rare Disease Day, so thank you for always taking the time to learn a little more about mine!

XO, M

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