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 😉.

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 😑.

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. 😆🍺
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 😉 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!

Wednesday, September 20, 2017

Oops! Forgot to Post a Post Infusion Update!

Happy September!

I’m 3 weeks post infusion and feeling pretty great! It’s been a few weeks of ups and downs in terms of fatigue and strength, but I think that I’m finally getting back on track.

The last round of infusions went very well. It was a whole new experience for me, though!

Due to new hospital policies, two certified chemotherapy nurses must be present for all Rituxan infusions in the hospital versus the infusion center (next door). The infusion also must be done at a much slower rate to reduce the chances of any side effects.
So, I went from having a 3 ½ hour infusion in the Infusion Center to an 8 hour infusion in the in-patient part of the hospital.

I was also in my own room for the two infusions, which had their own bathroom (nice when you have to pee every 45 minutes for the entire infusion) and TV. They also had these sweet air-beds that adjusted to your body weight.
So instead of getting butt cheek cramps and a sore back from sitting in the Infusion Center recliners (and not being able to do anything but lay flat or stand for the rest of the day), I felt like a million bucks walking out of my infusions and didn’t get sore or achey at all.

My first infusion was a little chaotic. I had no idea that anything other than the location would be different, so I was basically freaking out the entire time and was convinced that my nurse had no idea what he was doing.

The second infusion, my nurses were awesome! They had me order lunch, came in to chat and were just all around excellent. I also was prepared to be there for the day, so the second experience was much more positive.
No blown veins and only a little flushing for 24 hours afterwards, so all in all a very positive round.

I have no idea how it will be come February for my next round, but apparently the whole hospital is going through training for chemo drugs, so things may be different once again.

I’m going to ask my Rheumatologist if it would be okay to do my next 2 rounds at 7 months apart instead of 6, so that my future infusions fall in October and April instead of August and February… so I don’t have to miss out on being active for a month during the time of year that they let us all outside here in Minnesota! 😉
It’s been an incredible summer and I’m constantly in awe of how active I have been able to be. Such an amazing blessing this drug has been for me.

In other news, I am becoming pretty limited with my shoulder and really pretty pumped for my shoulder surgery in 2 weeks. By some magical means I have been able to golf, but that is about all I can do; and golfing is starting to get pretty painful, too. I’m getting excited about being able to use that arm again, pain free!
Dr. Meagher doesn’t think that the immune-suppressants should hinder too much of the healing process, since the surgery will be arthroscopic. I hope that she is right!

Thank you so much for the love and support that you have given me. I feel it during my infusions and I feel it in my heart each time I hit a golf ball, walk my dogs, and on the days that I need a little encouragement.

Feeling healthy this past year has given me a lot of opportunities to reflect on the past 7+ years since my diagnosis. Steadfast and strong every step of the way has been the love and support from my family and friends.

Thank you from the bottom of my heart.