Monday, June 18, 2018

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!


Wednesday, June 13, 2018

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.

Tuesday, May 29, 2018

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,

Monday, May 21, 2018


Just 21 days into Myositis Awareness Month and I am blown away by the support that I have received from friends. My goal was $380 and we have raised over $800!

I wanted to take a moment to explain why I am asking to push as far as we can past my initial goal amount.

Here is a real view into life with dermatomyositis (DM); one that I don’t generally talk about.

What you see in this photo is the bill that my husband and I get 4 times a year. What you see on this bill is ONE Rituxan infusion at $32,500. 

After insurance (of which we have an excellent plan), it costs us about $4,000 a year to receive the medical treatment that has been saving my life for the past 3 years

This is on top of the specialists that I see about once a month with a $50 co-pay, and the several life-saving medications that I take, some of which are not fully covered by insurance. I will typically have an MRI as well to monitor activity in my muscle tissue, which generally runs about $600-$800 per scan after insurance.

I am sharing this because I know that we are tremendously blessed, and it breaks my heart to know that there are families out there that cannot afford to try new treatments that could potentially better (and extend) their lives.

Before I tried Rituxan and got the right combination of medications in my system, I felt like the best part of my life was over. 
I read it every day in my support groups; people giving up, feeling like they will never have the life that they want.

Cost just shouldn’t be a factor in getting the treatment that you need to live your life and be the healthiest version of yourself.

I chose Myositis Support and Understanding as the recipient of my fundraiser because along with working hard in Washington and getting dollars to research, they help to financially support families that need it to get the treatment needed to save their lives.

Click here if you would like to donate! 

Thank you so much for taking the time to learn more about myositis this month! 
I am so grateful for your support and care for me, my family and the myositis community!

Wednesday, May 16, 2018

What is a myositis anyway?

Myositis Support & Understanding has a great article that explains what myositis is and how it is an autoimmune disease. 
⇒ Click here to read more!

Basically, myositis is muscular inflammation. 
When myositis is caused by your immune system attacking your muscle tissue, skin and lungs, it becomes part of the "Idiopathic Inflammatory Myopathies" family, which includes Dermatomyositis (what I have).

Dermatomyositis is diagnosed in adults, but there is also Juvenile Dermatomyositis (JDM), which very aggressively attacks kids. 
While I'm not old by any means, I had a great childhood. It's not fair how JDM robs little kids of what should be the most fun and carefree part of their lives.

I hope that modern medicine can one day find a cure for JDM first, and the other inflammatory myopathies to follow ❤️

⇒ Click here to make a donation to my Myositis Awareness fundraiser!

We can make a difference in the lives of myositis patients and their families with increased awareness, funding for research, supportive legislation and financial support for families that struggle to finance the necessary treatment.

Monday, May 14, 2018

WOW! Let's raise even more!

Holy Cow! πŸ˜
$535 for Myositis awareness, research and the fight for more supportive legislation!

I am so blown away by the support from my friends.
I would love it if we could keep growing this number even more! 

Myositis Support & Understanding Group also helps to financially support families that cannot afford the treatment that is needed to keep their Myositis fighter alive.

The more we can contribute, the more myositis patients can have a chance to live the life that I have been blessed to live after finding the right treatment that works for me (which took 6 [very expensive] years).

Perhaps I can entice you with these fashionable rubber Myositis Awareness bracelets! πŸ˜„
One for every donor!


Click here to donate! 
Happy Monday friends! Thank you for your support!

Thursday, May 10, 2018

It's Myositis Awareness Month!

Hello there! Happy Myositis Awareness Month! I am doing a fundraiser for Myositis Support and Understanding - my first ever! Every little bit counts towards getting research and legislation that will help those with a Myositis disease! Click here to donate! It's my dream that in my lifetime, people will not know what Myositis is because it isn't a big deal to have, not because it is so rare. ___________________
For those of you who don't know my story, here is a [relatively] quick review! In about 2006, I started to have trouble lifting my arms and walking up stairs. I was working as a hair stylist at the time and assumed that maybe my body just wasn't cut out for a career on my feet. I got a desk job and as the years progressed, I continued to have trouble with stairs and it became difficult to hold my arms up long enough to blow-dry my hair. I assumed I was "getting old", even though I was only in my late 20's. In 2009, I started to notice rough little bumps on my hand and my cuticles got red and irritated. After a scary experience with one dermatologist, I did a little research and found a new doctor. She took one look at my hands and said, "Wow, that looks like dermatomyositis!" She ran to her office and returned with a massive medical book, apologizing for needing to look up the tests to run, but explaining that dermatomyositis (DM) was very rare and not something that she sees every day. She asked me if I had any trouble lifting my arms, or going up stairs and I was shocked. I couldn't believe the two things could be related. The biopsy and blood tests came back a couple of days later and that was it, I was officially diagnosed with DM. The following 2 months were a completely terrifying whirlwind of appointments and tests. And EKG, MRIs, a muscle biopsy, mammogram and an unbelievable amount of blood work. DM has an increased risk of cancer and complications, so all the major ones had to be ruled out. My rheumatologist had me start taking immune-suppressing drugs to control the disease and try to push it into a medically induced remissive state. It was shortly thereafter that I had my first "flare" which eventually pushed me into medical leave from my job. By 2012, I had released my position, and had just got back on track from my flare. I wasn't satisfied with how I felt, though. I wanted more from my body and from my life. I was hired back by my company's "parent" for an at-home position that I still have today and cherish. My DM decided to flare again in 2015 and I was close to being in the hospital. I struggled to walk up the stairs and could barely keep awake for dinner. Massive amounts of Prednisone both saved my life and nearly killed me. I told my rheumatologist that I couldn't take it anymore and needed a better solution. I wanted to look into drug infusions. December of 2015 changed my life! I had my first Rituxan infusion and after months of fighting back with all my might, I finally got the life back that I had been craving since my early 20s. I can workout, walk my dogs, cook meals, run errands, do housework and GOLF! I can live a life that makes me happy and fills up my soul. I still have to make time for rest and recovery. I still have days where my body just doesn't want to go. I still have to modify what I put into my body to keep it happy, but I am living my life. I don't have to spend my days on the couch, wishing that I was able to join my friends, or make it to an event. I have my myositis support groups to thank for helping me through the decision to start Rituxan. I have research to thank for supporting my doctors in their recommendations for me. The combination of drugs that I take is a result of other patient's experiences as well as current information that we have about this disease. Rare diseases struggle to get knowledge passed around to medical professionals around the world. The Myositis Association and Myositis Support and Understanding help to bridge those gaps which helps with correct diagnoses and people getting the help that they need! I'm passionate about Myositis Awareness! Thank you for taking the time to learn a little about my experience and this crazy disease! Thank you, as always for supporting me and my family throughout this journey! XO, Maren

Monday, April 16, 2018

Tu-mor or Not Tu-mor…

Warning: Long story that I promise circles back around and makes a point. 
This is also a look into life with ongoing medical appointments. Yes, it gets stressful, but it’s all to make sure that I’m healthy, which is the goal! 
My doctors are excellent and work hard to stay on top of my health. I have a really great team looking out for me.
CliffsNotesπŸ…‘ version listed at the bottom under "Takeaways" 

I saw a Gastroenterologist in January. Having Dermatomyositis (DM), any Gastro Dr. is on high alert for dysphagia. 

Dysphagia is when your throat muscles weaken and you have difficulty swallowing and is a potential risk for someone with advanced DM. 

I had been having some trouble swallowing pills. This on top of thinking that I was having a heart attack at one point (long story) and feeling nauseous after eating led my general practitioner (GP) and I (after a few tests to make sure that my heart was healthy) to assume that I was experiencing GERD. 
My heart is fine, so my GP recommended that I take Zantac twice a day, which I have been for a few months and feeling pretty great. 

I did want to discuss the whole GERD thing further with a Gastroenterologist however, so I made an appointment. 
“Gut” health and auto-immune disease have been closely correlated and I wanted to make sure that I was as informed as possible of how to best care for myself and my own potential dietary needs. 

As I mentioned though, any Gastro Dr. will basically freak out at the word “Dermatomyositis” (which he did) and want to first rule out Dysphagia (which we did). 

I had a “Swallow Study” done in February, where a radiologist and speech pathologist had me eat/drink barium-laced foods/beverages and watched/analyzed via x-ray.

No dysphagia! 

So we were to move ahead further discussing GERD. 

Then in March I got the most terrible, sharp pain in my left side that radiated to my back, waking me up at night. 
It lasted over a week and prompted me to visit urgent care where they did a CT scan of my abdomen and found two mass/lesions on my liver and pancreas. 

I discontinued Azathioprine/Imuran right away per the advice of my Rheumatologist (which I have been taking since my last big flare in 2015 and wondered if I still needed, but was too afraid to alter meds since I’d been feeling good) and went in for specialized blood tests from the Gastroenterologist, all of which were in the normal range. πŸ‘

An MRI the following week revealed a 3.3cm focal nodular hyperplasia (FNH) in/on my liver and “stranding” at the tail end of my pancreas. 

I met again with the Gastroenterologist last Friday. 
FNHs are benign tumors that are usually nothing to worry about. We’ll look at it again in 6 months (via MRI) and see if anything has changed and go from there. More than likely we can just ignore it! YAY! πŸ™Œ

The not so awesome news, but nothing to be seriously worried about is that I do have pancreatitis. 
This is what has been causing the ongoing pain in my abdomen and was caused by my Azathioprine.

Pancreatitis may have been causing my GERD symptoms as well (nausea after eating and abdominal distention). The FNH can also cause GERD-like symptoms, but the Gastro Dr. feels pretty confident that mine is asymptomatic and the pancreas is what is causing my discomfort. 
So we table the GERD talk for another 6 months… 

The pancreatitis is what we’ll mostly be looking at in 6 months on the MRI. The Gastro Dr. is confident that with a few adjustments to diet and not taking Azathioprine, that it should resolve on its own. 

The diet adjustments are similar to what I have been attempting (semi-successfully) for the past couple of months, but now need to kick it up a notch (or fifty).
Avoid fatty, salty, high-sugar, processed foods and alcohol. An anti-inflammatory and auto-immune diet is also recommended and that just so happens to be my ongoing 2018 goal! 
Wooot! πŸŽ‰

The day after learning this, I decided to have a cider beer and a cupcake which resulted in almost instant stabbing pain in stomach. Okay! Point taken! 

I feel good about the current plan, especially since it gives me motivation and accountability for health goals that were already important to me. Hopefully, I’ll be able to really contribute to my own healing! 

Takeaways from this post: 
I have a healthy heart and throat muscles. 
I have benign FNH tumor in/on my liver that is likely nothing to worry about! 
I have pancreatitis, that [while a little uncomfortable] is not life-threatening and should resolve within the next 6 months. 
I may need support from friends and family to help me resist the fried foods, sugar and booze! 

In other news, I got my energy back last week and have been feeling energized and like myself!
We got 17” of snow over the weekend (yes, it’s APRIL)! 😱
Therefore, we unfortunately didn’t make it to the golf dome to try to hit some balls for the first time since shoulder surgery, but I’m ready and raring to go! 

My guess for an early April opening day at the course was just a little off! Haha! πŸ˜‚

Friday, April 6, 2018

April Check-In

Infusions are done. I’m exhausted.
These past two were a little rough, but I made it and now gladly on my way to feeling great again for 6 months!

Infusion #1 broke me down. My veins weren’t cooperating and my main nurse was passive aggressive and frankly just awful. The stress was just too much. I cried. Recovery was just a few days of resting.

Infusion #2 was much better, although the recovery has been more than I’m used to. I’m on day 18 post infusion and still feeling like I was hit by a train. Like in Ghostbusters II when the ghost train drives through Winston. That’s how I think I feel. Haaha. (click here if you don't remember that scene πŸ˜„)

So, now I’m good until end of September. Then, I’ll be on track for infusions in April and October, avoiding summer completely! Hooray!

Waiting 7 months instead of 6 was tough. The Rituxan really started to wear off at just past the 6 month mark and I was really fighting through exhaustion. I’m thankful that I didn’t flare (although you should see my hands right now!) and I’m glad that I won't need to do that again!

Now summer can be for me! Golf, gardening and all the things that we Minnesotans do when we emerge from hibernation time!

I have had a few additional tests/findings that I will save for a separate post. One of those findings has me holding off on Azathioprine/Imuran until further notice, which could be a reason for some additional fatigue.
I hope that by the next time you hear from me, I won’t be fighting falling asleep while typing!

Happy Spring!

Wednesday, February 14, 2018

February 2018 Update

Hello again and happy February!

All is well here, and I hope the same for you!

Struggling a little as I await my March Rituxan infusion. Getting tired and feeling run down. You may recall that I am pushing out a month longer than usual, to try to get my infusions to land on months that don’t cramp my style πŸ˜‰.

I chose the following quote for our letter board for the coming weeks as it reminds me to focus on simply doing my best today.

"The best preparation for tomorrow is doing your best today." 
H Jackson Brown Jr. 

I can do that! 

I continue to plug away on my shoulder PT and get activity in when and where I can. I have been snowshoeing around the yard on days that I know I have a few open days to follow in case my body revolts. So far, I have just needed couch time for the rest of the day and I can handle that!

My recent checkup with Dr Meagher was positive. 
We discussed my current state and symptoms and the plan to continue with Rituxan indefinitely. She’s anxious for me to get my infusion, as my Gottron’s papules have returned and are getting pretty uncomfortable and the exhaustion is getting intense. Thankfully, I have not had any muscle weakness return at this time. 

My next infusions are scheduled for March. 
Gottron's Papules on knuckles.

All within an acceptable range.
Red Blood Cell (RBC) count was low

Glucose was a little high.

One goal of mine this year is to take it up a notch with the anti-inflammatory foods.
Full-fledged Auto-Immune Protocol (AIP) has been a little scary for me, as it is about 100X more restrictive than Paleo (ie. it removes all things considered to be “gut irritants”), but there are people who have had such impressive results that they have even gone into remission with it.

Over the past 2 years I have eased into these changes, just dipping my toe in the water. I have greatly reduced my processed food, dairy and white flour, sugar, etc. I have even reduced my “nightshades”, which includes tomatoes (*sob*).

I slipped back a little after my shoulder surgery. Apparently Cheez-Its are not AIP compliant. I not only gained weight, but I am achy all over among other less than desirable effects. 
So, we begin again!

This time around we are adding the top anti-inflammatory foods to our regular rotation. Some examples are:
Cruciferous vegetables, including #1 winner Bok Choy (which I have never prepared, myself) and healthy fats, including salmon 😧 (which I am bound and determined to find a recipe that I like). I’m also taking a turmeric and ginger supplement and using bone broth instead of chicken/vegetable broth where I can.

I will also be easing my way into the GERD (Gastroesophageal Reflux Disease) Diet. More on that in my next post. Ahhh, health is fun πŸ˜‘.

Thankfully there is a lot of crossover on these two “diets” (read, “lists of food”), so that makes me feel better. So does calling them “lists” instead of “diets”. Just saying.

My next post will include a little ditty on GERD as well as a likely update on my March infusion! Until then, stay warm and cozy!


Thursday, January 18, 2018

I Almost Forgot - Allergies!

V1 Rash
I look sad because this particular
rash appeared after just 2 sips
of a Blue Moon.
"Not Blue Moon!", I cried. πŸ˜†πŸΊ
Since I know that there are other Myositis and immune suppressed people that read this blog as well as friends in the medical field, I feel like it’s important to share my recent allergy information.
Others can skip this, since it’s a long, boring story about allergies. Not very exciting.

Many of my friends know that I have been experiencing some kind of food allergy reaction over the past 2 years that I hadn’t been able to determine the cause.
First, I thought that it was tree nuts. Then, perhaps some kind of alcohol. It happened every time I ate something at a hotel restaurant in AZ, so perhaps some kind of preservative or cooking spray? All of these theories, to no avail.

The reaction was a red “beard” on my face (or sometimes a “goatee”) that I could feel (but didn't itch or burn) that appeared within about 10 minutes of eating or drinking something. No shortness of breath other than a couple of panic attacks the few times it happened.

Let us first travel along my journey to this newfound information:
  • ·   10 years ago
I have complete allergy testing done and learn that the only thing that I’m allergic to is dogs. Knife to the heart. Allergy medication it is, for life!
  • ·   Two years ago
After having a blistering skin reaction when using a variety of skin and hair products, I have extensive skin allergy testing done. It's determined that I am not only allergic to nickel (as I always have been), but extremely allergic to lanolin, propylene glycol, and two other things that I have never even seen listed in any ingredients.
Avoiding these ingredients has been a major lifesaver for me, although they’re in f#*king everything, so that’s been fun.
  • ·   One year ago
I met with an Allergist who told me that due to being on immune-suppressants for as long as I have been, I can’t have any allergies. He told me to take a 24 hour Zyrtec twice a day and one immediately after any rash.
I left feeling pissed off and completely confused by doctor speak, which I try REALLY hard to understand as it pertains to me and my health.
  • ·   A couple months after that appointment
I asked my Rheumatologist if I had no allergies due to my immune-suppressants and she looked at me like the Allergist that I saw was on drugs and told me that I can certainly have allergies. Wtf.
  • ·   6 months ago 
I was at my Dermatologist’s office and showed her the photo of my “beard rash” (above) in an attempt to determine what the hell it was and she gave me an EPI pen on the spot and told me how to use it. I freaked out.  
Per my Dermatologist’s advice, I made an appointment with a new Allergist for a second opinion.
  • ·   Two weeks ago! 
After having to reschedule twice due to cracking because of allergies while off my Zyrtec (you have to be off of any allergy medications for one week before any allergy testing). I made it. Barely.

Here’s what I learn: 

1. Methotrexate and Azathioprine kill off the cells that allow allergies to show up on skin tests.

2. Rituxan kills allergy cells (or something).
If at some point, I stop getting the Rituxan infusions, in 6 months to a year, I will get a whole new immune system. So, I’m not actually allergic to dogs (anymore).

“Your reactions are unlikely to be due to a true IgE medicated reaction, but that is not to say that you are not reacting through a different mechanism.” – Allergy Dr.

3. Allergy cells can “fire” for fun. 
So, even if you don’t have "allergies", the allergy cells can put out the message for the reaction of that nature.
Apparently, my allergy cells are having a great time, because for whatever reason, they fire constantly.

4. Because the Rituxan kills the allergies, the chances of any reaction progressing to anaphylaxis is very unlikely (so I can ditch the dog-walking fanny pack that carries the epi pen).

5. The “Beard Rash” is called a V1 Reaction. FYI.

So, the first Allergist and my Rheumatologist were apparently explaining things right past each other, as both were [somehow] correct.

I’m told by new Allergy Dr. to continue using Zyrtec twice a day and to add Montelukast (aka Singulair) and Ranitidine (Zantac – apparently increases the effectiveness of Zyrtec) to the pill tray to cover additional allergens. I was actually already taking Zantac twice daily, but that is another blog post...

I’m given Azalastine (Astelin - an allergy nose spray) to use if a V1 rash appears. It responds faster than Zyrtec in those situations.

So, I’m good?
I went home and as an "F U" to the past 2 years, ate a macadamia nut cookie that I had been staring longingly at in the cupboard for a month and was completely fine. It was delicious.

I’m okay with all of the information above, but I leave with questions that I know I asked at least 3 times in the appointment, because all of the B cell, E cell info was so confusing to me.

  • If I don’t have allergies, why do I have such severe skin allergies?
  • Why do I still have to avoid the foods that I thought that I was allergic to?
  • Why are my allergy cells having so much fun in there?
  • Why is all of this happening only in the past 2 years, which is also how long I have been getting Rituxan infusions? 
  • If I don’t have allergies, why do I have “breakthrough” in the fall and spring?      
  • Does taking immune-suppressants make you more sensitive to… everything?

While the last appointment was more informative, I am not super pumped about more medication and the fact that I can expect the rash to continue. 
Nice that it won’t likely be harmful, but it’s a little alarming when it happens, and isn’t the best look for me πŸ˜‰ It also takes about 30 minutes to an hour to go away after taking the response medication.

I wanted to share my experience with others taking immune-suppressants for shared knowledge. I’m also curious if any friends/readers have additional information to share in the comments for us all?

This blog has been viewed nearly 55,000 times and by readers in 10 different countries since its creation in 2010 – so I know that it has been helpful to people like me and their families.

Thank you to those who have taken the time to read this and for sharing any information that can be helpful, especially if it’s in Laymen’s Terms, since clearly decoding medical speak in this subject has not been successful for me!


Tuesday, January 9, 2018

Happy 2018!

Happy New Year!
Only a short 4 months since my last post… ooops! Thank you to “Tough Jelly” for the jog. I’m here to update!

The past few months haven’t been too eventful, as I have been focusing solely on getting my left arm to move again. Surgery in October went well. I had a capsular plication on my left shoulder as well as a repair to the labrum where it had pulled away from the bone (sorry for the cringe, mom).

My surgery date fell on the day before the
Huntington Beach Color Run, which I had
planned to attend with friends. They made a
little cut-out of me and brought me along!
The procedure was a success, as my new range is “safe” and no longer hyper-mobile. Pain is gone as well (well, actually I can’t lift my arm up high enough yet to know if it would hurt, but I think I’m good – Ha!).

The past 2 ½ months of physical therapy have been intense. My shoulder and arm had atrophied significantly, and sitting on the couch for a month drugged up, eating Cheez-Its didn’t help me much either. Slowly but surely though, progress is being made.

I have otherwise been doing well. I got the flu in December, and received my first Tamiflu Rx. I think that it helped, but it still took me about 2 weeks to shake and my appetite didn’t return for about a month.

The holidays were a lot of fun and although my left arm wasn’t too much help, we were still able to host both Thanksgiving and Christmas Eve.

Teddy the fighter!
Our pup Teddy’s cancer returned in his lymph node, causing it to grow to 2cm. Then, in 2 months’ time it shrank down to 1/2 cm, which is practically unheard of (aka “a miracle”)! We have been so blessed with so much bonus Teddy time! What a little fighter. He’s so happy and full of life; I guess he’s just not ready to go yet!

At my last Rheumatologist appointment, I was given the go-ahead to have my next Rituxan infusion in March (one month “late”). This will push the following infusion (also one month “late”) to October, so I can enjoy more of the summer. I’ll then plan to go back to every 6 months.

I have big goals for myself in 2018. At my recent post-op, the surgeon said that it’s a realistic goal to be ready to golf by spring. This will involve a lot of hard work, but I’m ready for it! I’m planning on 2018 being my strongest year since my diagnosis (2010)!

My next Rheumatologist appointment is in a month, so I’ll be able to see how my labs are doing! That’s usually my cue to update, so I’ll follow up with you then!

Hope that you had a wonderful holiday season with your family and friends.
Thank you for thinking of me and mine!