Showing posts with label Lupus Awareness. Show all posts
Showing posts with label Lupus Awareness. Show all posts

Thursday, October 20, 2016

Cautiously Optimistic

Cautiously optimistic.

That’s what I keep telling everyone around me these days when they ask, “How are you feeling?” In the past the answer to that question has always had to do (mostly) with how badly I was feeling. The answer varying by degrees of “sickness” as well as degrees of “how-transparent-do-I-want-to-be-ness”. Responses such as, “I’m hanging in there” and “I’ve had better days” or maybe even “This has been a good week” are the typical responses. But never, in all of my drug therapies, hospitalizations, surgeries, infusions…never have I been able to say that I am cautiously optimistic. In fact, I have never used those words in regards to this illness. And it’s not cautiously optimistic. It’s more of a...

Cautiously Optimistic!! (said with a smile)

Before I go any further… Yes, this is good news. This is very good news indeed.

Am I all better? Oh man, do I wish! I’m still sick. I still have neurological issues, I still have pain, I still have joint trouble and headaches, fatigue and GI problems…. Yep, it’s all still there. But very, very seldom can I say confidently that these things are changing. Little by little, they are changing. Some more than others. And it’s for the better, not for the worse. Considering the past couple of years have been a steady decline with more and more frightening symptoms, this is some pretty awesome news.

Without getting into too many details, I can break things down into the converging of three events. One, the new chemo infusion I am on, Rituximab. Two, our trip to Montana (and a couple of scientists we met there.) And three, a Medium Chain Triglyceride Nutrient Dense Ketogenic diet.

I received my Rituximab infusion in May. The decision to go on this was because of the neurological degeneration I was experiencing, consistent with MS, but undiagnosed. I was told at the time I received it that if it worked, it could be a “miracle drug”. I was also told that I might not feel the effects of it until sometime after month three, maybe even four or five. About two weeks before we were to leave on our trip out to Montana this Fall, I had hints of starting to feel better. This thrilled me because Dave and I have never been on a true vacation without kids and this was some place that neither of us had ever been. If you follow me on facebook you already know how successful that trip was! It was truly a life changing experience.

Because I was starting to feel the positive effects of the chemo, I had less pain and fatigue. It was perfect timing. There I sat, mountains before me, and I actually felt like climbing them. The little over two weeks that we were there were a series of pivotal events. Each event put me in a place of literally and figuratively “me vs. mountain”. I did things I never thought I would ever do again - and some I won’t.  On numerous occasions I was in situations that were absolutely terrifying (and some not so smart!). Situations that included hiking at heights that I was unqualified to hike at, driving on mountain passes not made for a goat, getting lost in a desert canyon without food or water or glucose (for Dave) or phone reception or a gun or bear spray or sunset. Traversing paths where grizzlies and mountain lions reside without proper safety mechanisms… Now, before you send me a note scolding me, let it suffice to say that the majority of the time we were safe and took the right precautions. And some of that time we were relying on a friend that was much more qualified that either Dave nor I. But there were times where, in hindsight, we thought ourselves a bit foolish. But…. But...each time I found myself in this really odd space of being scared out of my mind and then working through that fear with mindfulness. Sometimes it was just pushing myself to a higher altitude, literally with each step, forcing all of my strength into the against mountain (illness). Sometimes it was absolute fear and having no place to go. No one to look to other than myself. Situations that I could not quickly get out of and had to think clearly about. In my mind, these are situations in the past where I would have broken down, freaked out, cried like a frightened child. But I didn’t. In any of them. Not one. I thought clearly, I was renewed a by lack of fatigue and I worked my way through each scenario. Each time ending in a place (figuratively and literally) that was a little bit higher than before. By the end of the trip, I felt like I could conquer the world. This feeling has not left.

Somewhere in all that adventure, we were hiking one of those paths we should have never been on and much to our surprise we came upon two people. That, in and of itself can be unusual when you are hiking little known paths, but really unusual in that they were both scientists. One specializing in diabetes and the other in...yep, autoimmune disease! We had a conversation with these two that, to this day, I still feel like. “ Did that really happen? ” But yes, it really did. We went back to our cabin that night and googled them! They had a lot of information to share on leading edge science in regards to immunology and cancer. We got information on studies to research, other scientists to look for, names of authors and a wealth of other valuable leads. We swapped emails and by the time we got home to Wisconsin Dave had already received an email with more information. That’s where the Medium Chain Triglyceride Nutrient Dense Ketogenic Diet comes in. Something much, much too complicated to discuss in this post, but if you want to read what I know about it and how it is working with me, click here .  

Needless to say, I began researching the second I got home. I consulted my doctors, began working with a special pharmacist, got blood work done and started the protocol immediately. Disclaimer: This is NOT a “diet”. This is a process in which food is used as medicine in a very particular manner. It is also not for everyone and should only be done after consulting with your physician. It can actually make you sick or make some conditions worse if not done properly.

This concept is not new (beginning in 1920) , although it has changed significantly in recent years. Currently, this protocol is being used successfully for severe epilepsy. Studies are underway and early signs are extremely encouraging for things such as MS, Autoimmune disease, Cancer, Parkinson’s, Alzheimer’s, TBI, Psychosis, to name a few. I have been told that the University of Minnesota currently uses a form of this for children with severe epilepsy. It seems to be most beneficial for diseases of the brain and nervous systems, but is also quite promising for autoimmune disease in general.

Because I was already experiencing improvement from the Rituximab, when combined with my new sense of empowerment (also known as "I'm ready to kick this disease in the ass!"), it made starting this incredibly complicated and not so fun protocol manageable. I’ll tell you right now, without the assistance of Rituximab, I would not have been capable of doing this. If I would have gotten this information three months ago I would have been too sick to even consider it. It takes a lot of work and thinking .The results have been nothing short of amazing. Immediately I noticed a decrease in fatigue and an increase in energy. Especially at the end of my day when I am usually so sick I just want Dave to rub my back so that I can disappear into a pill induced coma. Shortly thereafter I started realizing that some things were becoming easier for me. Remembering things. Writing and spelling. Multitasking. Driving. Balance. Brain fog. Headaches. All improving. Not gone by any means, and I have a long way to go, but improving.

So where to go from here? Well, I met with doctors this week and the plan is to stay on all medications with no changes. My next chemo infusion is scheduled for November. I will take two months to get strong after the second dose infusion and if things are still improving we can start tapering some medications in January, with hopes of getting off some. I am also starting to see a Functional Medicine Doctor at an integrative clinic, in conjunction with my team at the U of MN.

Do you know how exciting it is for me to type that? I am sitting here crying as I hit the keys. And yet...I am so scared. So I ask you to please keep me in your thoughts. Allow me to be positive, but don’t forget that I struggle every single day with this disease. This new endeavor is quite the challenge and it’s going to take a lot of strength and commitment on my part. I need your encouragement. I need your understanding. And most of all, I need for you to walk with me and be…

Cautiously Optimistic!

A million thank-yous would not be enough.


Tuesday, May 8, 2012

What You Don't See

This is my current Facebook profile picture. 

May 2, 2012

This was my Facebook profile picture on March 22, 2012.

...and January 7, 2012

...and December 4, 2011

...and October 19, 2011.


This is me today. In fact, this is me almost every day.

Minus the make up,
minus the wonders of Adobe Photoshop,
any pretense.

May is lupus Awareness Month. If you didn't know me, or have lupus yourself, or actually know someone with lupus, you most likely would not even know this small piece of trivia. You might not even know what lupus is. Four years ago, before getting sick, I sure didn't.

Each day this month various lupus Facebook pages have been posting interesting and informative snippets of information to help bring awareness to people in regards to lupus. Most of the information I already know, but every now and then, something shows up that I was not aware of and I am reminded of how important these communities are to me. 

But, if I had to guess, the average person on Facebook probably does not "Like" these particular pages. In fact, I don't imagine my friends and family even do. So if one does not "Like" a particular page, then one does not receive the "informative snippets of information" that is sends out every day. Which got me thinking...

What do I want you to know? What do I want you to really know

In fact, what if I only had one thing I could write about today? What would it be? 

It would be this...

Lupus can be a very invisible illness. Because of the chronic nature of the disease, those who have lupus must learn how to manage with the illness on a daily basis, every days a week, 365 days a year...every single day of their life. Mothers continue to care for their children, fathers go to work, students go to school, people mow their lawns, cook their meals, shovel their walks, go to social events...all the while struggling with issues such as severe joint and muscle pain, nausea, vomiting, headaches, painful skin conditions, vision problems, kidney failure, cognitive difficulties... the list goes on. And most days, if you were to look at any one of these people you would have no idea the suffering they are enduring. 

I've been very fortunate in my life. I have a supportive family and a beautiful circle of friends that refuse NOT to know the real me. Not even Photoshop pulls the wool over their eyes, and I simply cannot imagine it any other way. But there are many out there who travel this journey completely alone. I hear stories every day of partners and spouses that are unable to fulfill their roles as caretakers. I hear stories of comments spoken by well meaning friends and acquaintances that absolutely break my heart. A simple "you don't look sick" can pierce like a knife when you're standing there suffering silently. Even the tone of it seems to imply you must not be sick then. Yet, "You look nice" is such a lovely comment to get and does nothing to imply any conclusions about whether or not I am sick.   

It took a lot for me to post that last picture. Not out of any sort of vanity, heaven knows I'm way beyond that whole concept! But because just like everyone else struggling with this disease every day of their life, I work really hard to....yep, you guessed it...not look sick.  And therein lies the crux. Like my mother always said, "You're damned if you do and damned if you don't!"

So what advice do I have to give? What snippet could I leave you with today that might actually make a difference? I think it would be this. And this pertains to anyone you meet in your life. 

We must always do our best to not make any assumptions. 

Because we just never know. The person standing before you could be struggling with depression, they could be victim of domestic violence or they could be suffering silently from a disease such as lupus. We just never know. Assuming anything because someone looks happy or dresses well or just happens to be out for the night is an assumption we must not make.  

Looking at our friends and loved ones through the eyes of compassion, trusting that their journey is exactly that - their journey and loving with our whole hearts is what we can do. 

I recently received a post on my Facebook wall that said this,

The average person tells 4 lies a day or 1460 a year; 

 a total of 87,600 by the age of 60. 
And the most common lie is...
I'm fine.

Who knows if this is true. I actually think the numbers should be much higher, especially if we take into consideration all the lies we tell ourselves! Either way, this does not make the job of caretaker or friend very easy. I will be the first to say that I could do much better at being honest and letting others know when I am sick. Just remember that those living with chronic illness are managing the best they can each day with something that will never go away. Actually admitting you don't feel well every time you don't feel well...well, even WE get tired of hearing about it!

If you would like more information on lupus and how you can help bring awareness to your community, please visit The Lupus Foundation of America.