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!