Posts in Personal
Humira: The 3 month mark

Howdy all - here is another health update with Humira. It still continues to work well for me, and the injections continue to be no problem - expect one time 3-4 injections ago. My whole thigh went red and swelled up considerably…I made note of this and let my doctors know as I read it is one of the side effects. The only thing I did differently with that one was thus: my Humira Ambassador was watching me inject (they like to make sure you are comfortable with it) and this time I pinched my leg where I injected and immediately after went to play basketball for an hour. To me, I think I stirred up the medicine by running around right after and not giving it some time to disperse.

Anywho - other than that one time things continue to go well…I can tell the day I inject my Psoriasis goes down to an all time low and slowly makes a comeback right up until the next dose, so I feel like we are close to getting the skin clearer more consistently.

My doctor is pleased and we shall see what more he has to say later this Summer. For now, we keep going on this road…being vigilant and healthy.

Till the next update!

MC

...And The Dining Room!

I’ve been involved with the theatre since my freshman year of high school…so 2003…man, I’m getting old. 

For most of high school I thought “this is what I want to do”, but I soon realized when I was auditioning for colleges how many others wanted that same dream.  So, I found another passion of film and photography.  I now keep theatre as a very deep passion of mine, and have been lucky enough to portray some fantastic roles, and have two great venues near me to feed my passion.  The Dorset Players are one of the longest running community theatre’s in the country - they are going into their 92nd season this Fall!  A new player emerged closer to me in Bennington Community Theatre, and so far we have done two official productions under the umbrella of Oldcastle Theatre Company. 

Last December we staged ‘The Curious Savage’ to great success, and this Spring we brought A.R. Gurney’s ‘The Dining Room’ to life with roaring success.  

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A little backstory about ‘The Dining Room’, this play is originally written for 6 actors to portray over 50 characters, but Christine Decker (our rockstar director!) cast 14 of us to play the 50 characters, and that worked smashingly.  All of the scenes revolve around the dining room - naturally - and the vanishing culture of the upper middle class called The Wasps.  From the depression era to modern day, there is a long time span of the scenes, but all of the action of the play takes place in a single day.  With early morning light to start, and then by the end, it is time for an evening dinner party.  It is very clever.  

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We started rehearsals back in mid-February; with our performances coming up the first weekend of May.  With every production the director has a different process with the rehearsal process and bringing the play to life.  What I really appreciated was the process Christine brought to ‘The Dining Room’ as well as ‘The Curious Savage’ - instead of one quick night the do a read through and then getting right up and starting blocking, we took some time to be at the table and have multiple table readings.  For me, this helped get myself familiar with the lines a bit, before just getting on your feet still not sure what your lines are.  It also helped us explore these characters more, figure out more about their stories and connections.  These scenes only last 5 to 10 minutes, but there is so much crammed into that time, but also...what has happened to those characters before they graced the stage and what will happen once they leave?  Taking the time to do character development takes the level of your production up a notch!  

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Some rehearsal fun!

The Dining Room // 2019

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For 10 weeks we had a blast, putting a lot of work into this play, and I am very sad to see it end.  Everyone worked so hard bringing their characters to life, and it was such a pleasure to go to rehearsal every night with this group of fine people.     

Once we wrapped the table reads we began running the play, blocking it as we went.  Blocking refers to how we actors move about the stage during the scenes.  Do we sit?  Do we stand?  Do we walk around? Do we run?  Thankfully we have the script to guide us, providing an outline, and then Christine will tell us what she likes and what she doesn’t like and we adjust accordingly.   

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I would be remiss if I did not mention everyone behind the scenes bringing it all together.  From the set, to costumes, props, lights, sound - all essential in making a successful production.  We looked fantastic in our many, many costumes, the set was divine and the lighting was perfect (going from early morning light to evening light throughout the show if you were carefully watching) and helping us along, making our characters and the set more complete was the long, long list of props needed for this show.  Without the people helping behind the curtain these shows simply would not be possible.  

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Through this experience, and spending so much time with this group you become a family of sorts.  We care for each other, laugh with each other, and enjoy each other’s company.  We’ve spent so much time together, working on our baby (the play!)  that when it’s over...it’s as though that baby has now grown up and left the house...leaving us empty nesters, till the next production that is.  

This group of people is now part of my life and that makes me very happy.  That is one of the most beautiful parts of community theatre, or any theatre in general, is that you work with the group for so long and so often they become part of your life, expanding your community, your friends, and people you know.  Now you have more people to hang out with, do things with and you know you have things in common: your love for theatre.  

The stage has allowed for incredible things for me, but nothing beats meeting and gaining new friendships - they help us along in this crazy theatrical production called: Life.  I thank each and everyone of you for that.   

To us.

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Humira: Injection The First
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Monday was my first injection of Humira, so we are now one week in. As explained in my previous post, I was nervous, but also looking forward to seeing how the drug works for me. This serves as a quick update, and I’ll keep you updated throughout the journey. Now let’s be clear, I was not expecting a miracle with just one injection, it will take time, but I have seen a few things.

I’ve seen some fading from some of the Psoriasis, but not all. I’ve tried to not use any topicals to see how well the Humira was working, sadly I had to apply a little bit as some spots were getting a bit rowdy, but I like where we are heading. A hopeful goal is close to clear (or fully clear!) for Summer.

On the joint side of things…my left thumb still continues to be a tad bigger than my other and slightly red. A lot less pain when bending it all the way, so that is promising! Ankles and knees have had a lot less pain for a bit while under the Prednisone regiment, and continue to display that. One way I have noticed progress is when I could finally get back to some quick morning exercises, lunges were the one that got me with bending to that degree. More recently this week I have felt less stiffness when I do lunges, which is awesome, however there is still a tad bit of stiffness, but hardly noticeable.

So, we shall see what happens with injection number two, and when I see my rheumatologist later this month. Injection two in t-minus one week!

PersonalMike Cutler
A healthy bit of advice...

I’m not normally one to share every detail of my life online…there are those who want you to know everything that goes on with them, every second of the day…you know who you are. ;)

That being said, I’ll be that person for the next few minutes, my ailments began in mid December when my Iritis and Uveitis returned in my eyes, the last time this happened was when I got Lyme Disease a few years back. Several months after having Lyme, I developed Psoriasis…my autoimmune problems began, and I think that lovey little tick awoken it all.

Random Rant: I’m sure you know what autoimmune means, but if you don’t here is a quick synopsis: Autoimmune is when your immune system is overactive, which can cause a number of problems for your body. So while the immune system is fighting off the germs over there, it is also attacking healthy parts of your body, but it perceives them as threats, like the germs. So germ fighting (POW, BOOM, POW) and at the same time (for me) attacking my eyes, my skin, my tendons and joints…the body is a complex place that’s for sure!

So, back to the story - I venture to my fantastic eye doctor to get that cleared up…and as it’s clearing up I develop some stomach pains that crop up a few times a day and pass very quickly, along with the beginnings of pains in my legs which I attributed to being on my feet working on Christmas Eve. Nothing progresses in the worse direction till after the New Year….

…Ahhh helloooo 2019…this year certainly entered with a bang! First was a trip to the lab to get a lyme test and a liver check up (needed when taking Methotrexate for Psoriasis), thankfully the lyme was negative, but still no answers as to what is ailing me. The stomach pains have continued, and now the leg pains were settling into my right calf, left knee and ankle, and getting painful to walk. I made an appointment with my doctor, but wouldn’t be seen until mid-February…that surely wasn’t going to work. Thankfully, I was lucky to be seen by another doctor in the office on January 11th. I told her everything that had been going on, and she was able to listen, look at me, and type it all out at the same time - very impressive! What concerned her the most was of course, the legs. I hadn’t noticed before but when we looked at my ankles they were swollen, so much so I couldn’t see my achilles heel, not normal for me…and she measured my right calf and it was 1.5cm larger than my left. It was also warm and the spot that was the main point of pain was stiff and slightly hard. Off I went for an emergency ultrasound to see what was going on. After an hour wait I was in the room, I never had an ultrasound of my leg before, so I was very curious what she would find. She scanned the entire leg from groin to ankle and foot, taking many pictures, and having me move my foot back and forth and as I did that you could hear the movement in my leg, it was very interesting. That completed I went home, anxious to relax.

Only home for a little bit, the doctor called letting me know nothing critical was found, but they did find a superficial thrombophlebitis. Non-medical terms this is a blood clot found in the surface veins near the skin, amazing something so small can cause so much pain, thankful this wasn’t in your deep veins or we would have had a much more serious problem, and it is rare a superficial blood clot moves to your deep veins. She told me to rest, elevate, use heating pads, and take Ibuprofen for the pain. My wife really stepped up and was incredible, worried for me, she took care of me to the T - and I owe her so much now! :) I took a few days off work (unheard of for me) and rested up. My movement was slow and painful, and this would go away hopefully in a week or two. The question was still out there…what is causing all of this? Mid-week I head in for more lab work and a chest x-ray, my doctor had a few ideas as to what may be causing all of this. First up was Sarcoidosis. This would be answered with the x-ray, to see if I had lung growths, since I already have the skin patches of Psoriasis. Very relieved that came back clear, but my inflammation levels in my blood work were extremely high, so we continue to look.

The next thought was toxicity to the Methotrexate. I stopped taking that and went from the Ibuprofen for the legs to the magical drug Prednisone. This is truly a wonder drug…after a day the swelling was gone, pain was gone, I was able to move more naturally, my stomach pains were gone, and my skin was the clearest it’s been since 2013. The goal here was to get the legs cleared up and see if the Methotrexate was the cause of all this. The only down sides to being on Prednisone was the fact I had to pee more often, and my appetite was through the roof! Though, I could stand to put on a few pounds. The 10 day regiment came to an end…the pain and the swelling returned.

I finally got in to see my doctor on January 30th; he is a great guy and I don’t feel rushed when I see him, we can chat about the problems and really find a solution. He had done a lot of research into my ailments and we discussed things as he looked me over. We were onto a new diagnosis as if it was toxicity to the Methotrexate my body should have cleared that up and the pain and swelling would be gone, since it was not gone and still present, something else was still causing this inflammation. The current thought trend is: Psoriatic Arthritis. This makes sense as I check off a lot of the boxes for it, but there is no smoking gun that you can test to say YES - you have this 100%. Next step would be seeing the Rheumatologist.

What does Psoriatic Arthritis do? Well, being a form of arthritis it goes for the big joints, and even the small ones, such as your fingers. I’m lucky it has not gotten there…yet. For me, my knees and ankles are stiff at times to move, as well as my tendons near my bones in these areas - this is where it is different. The Rheumatologist said it best: PsA goes for where the tendons meet the bones, and there is fluid build up which creates the stiffness. This is exactly what I have been experiencing! Of course, if left untreated it will destroy your joints.

He is a very young doctor, but very knowledgeable in his field. I was lucky to snag a cancellation spot, or we were waiting till mid-March. We had a very thorough discussion on my problems, and why we think it is linked to PsA, and the steps forward. They were as expected, we will treat this using Humira, a biologic drug. We discussed all the things about going on this drug, certainly a lot to take in, but this is the way forward to being back to normal.

Fun fact about Humira: As I read more into this drug (the swiss army knife of the drug world) it tackles 9 different ailments all from one injection pen - incredible! More incredible? The fact that in 2012 it was the most popular drug in the world - making the company from North Chicago 12 billion dollars. Since it is a biologic it is very expensive. I’ll be taking 2 injections a month…if you had no insurance the out of pocket cost is about $5,000 dollars, absolutely insane!! Thankfully I have very good insurance through work, and my out of pocket cost per month is $150. That is brought down even more with the Humira Savings Card which eats the rest of that $150 to just $5 dollars a month - very manageable, but for those who aren’t so lucky that savings card is truly a savings card, allowing them to have a normal life taking this drug.

I’d be lying if I said I wasn’t nervous or apprehensive to go on Humira. I’ve done a lot of research about the drug and the risks/side effects it poses. Since it suppresses your immune system you have an increased risk of serious infections and lymphoma is also a risk. I’ve found some stats that do help me a bit with how low these are, but they are still there and I need to be vigilant, as I always try to be - I’m a germaphobe, so that helps…maybe.

On the flip side I will say this - I am very lucky to live where I live. SVMC is one of the best little hospitals in the country. The care and attention I’ve received these last few weeks has been extraordinary.

As I sit here now, typing this out the pain is minimal, but I can still feel the stiffness. This is my path now, and I know I must follow it, with the Humira, to get myself back to 100% and enjoy all the things I do enjoy in life. I will be vigilant and (as I read online) temper my fears with reality.

So…I’ve bored you with my story, but here’s my healthy bit of advice, and it’s simple: If you are not feeling 100% yourself in any aspect of your life, seek help with whatever it is. I was stupid and waited a week too long, thinking it would go away on it’s own, clearly it has other plans for me. We all deserve to get quality care and live a quality life, so if you need help, get help! :)

PersonalMike Cutler