Thursday, December 8, 2011

New Diagnosis...A Matter of Perspective

Life's A Comic Strip

You know, sometimes that's just the way it is! We've all been there. I remember when I totaled the very first new car I had ever owned. Long story, but in the midst of a July move, I inadvertently left a deep freezer worth of poultry and beef in the back seat of my new Saturn...for a week. Needless to say, there was nothing that could be done. The insurance company said, and I quote, "We have to handle this just like a dead body." Gross.
But what I remember most is how many people said to me, gosh, you got another new car out of the deal! Yes, I guess I did. But in the end it added about $5000 onto my loan since the previous car depreciated the minute I drove it off the lot. Not really what I had originally  intended! I would have much rather kept my old new car.

It is a matter of perspective, I guess. In the end, everything is. How I choose to look at something, the story I choose to tell myself, is exactly that. A story.

The week of Thanksgiving I finally met up with my rheumatologist. It's been a tough couple of months and I was pretty eager to find out what was/IS going on with my crazy overactive immune system. I managed to get down to about 2mg on the prednisone taper regimen when all autoimmune hell broke loose. Basically, what that means for me is this. Think about when you get sick. Your body has a response to that illness - be it virus or bacteria. It is that response that actually makes you feel sick. For example, if the membranes of your nose or throat become inflamed by toxins, your immune response is to sneeze. If  your lungs become infected, there is a stimulation of sensory nerves in the lining of the respiratory passages that create the reflex to cough, thereby expelling and clearing the lungs of those toxins. When viruses or bacteria find there way into your body, your body may respond by initiating a fever. This complex process (which can be quite painful and dangerous if out of control) raises your bodies temperature in order to create an environment in which the virus or bacteria cannot survive. Without the fever, the body would not be able to overcome these toxins. And the same is true for vomiting and diarrhea. Both responses eventually rid either the upper or lower GI tract of toxins that have taken up unwanted residence there. The immune system is an amazingly elaborate and complicated system, recognizing invaders, putting up barriers to prevent those invaders from attacking  vital organs and eventually destroying the ones that do manage to "get through"! It's wonderful...when it works.

In autoimmunity, the immune system's ability to recognize what's foreign and what's part of your own body breaks down in some way. Thinking that cells or tissues or organs are foreign invaders, the immune system moves into action to be rid the body of these invaders. So in a very small nutshell, what this means is that the body of someone with autoimmune disease is constantly in response to what it thinks is toxic. For someone like me, with multiple autoimmune diseases, my body is attacking multiple systems and organs thinking that they are foreign. That's why, quite often my response to the question, "How do you feel?" is answered with, "I feel like I have the flu...all the time." My body is in constant attack mode. If left unchecked (this is where all those nasty drugs come in) then eventually my body would succeed at wiping out things like my pancreas, my liver, my kidneys, my nervous system, my skin, my hair.... the list goes on.  Up until two weeks ago, my primary diagnosis were Lupus, Sjogren's and RA. I have now added Ankylosing Spondylitis to my list, which accounts for the increased pain and stiffness in my spine.

So, why tell you all of this? A couple of reasons. One, the more sick I am, the more people want to know what exactly is wrong with me. It's a hard question to answer sometimes. Quite often I just don't have the energy to explain. Or, as is sometimes the case, people don't really want to know the answer. Not because of a lack of care or concern, but more just because the simple asking is out of politeness and not so much out of a want to least right then and there. I get that. And seriously, I have no problem with it. In most situations, the lack of really wanting to know pretty much matches my lack of wanting to explain! (I hope that makes sense). I'm totally cool with being polite!

Two, I want you to know how I'm managing with this new diagnosis. And this is it...
I'm good.
I really am good.

This is the deal. Am I sick of being sick sometimes? You bet!! But That's where the story stops. This illness, this disease is not me. I do not wonder what evil force is out there working desperately against me. I do not wonder what causes pain and suffering in this body or in this world, nor do I sit and wonder why things happen to me or if I  will eventually find the end of my coping rope! It just is what it is. Period. Attaching "good" or "bad" to a situation is my doing, and has nothing to do with the actual situation. I thought having to pay $5000 for a second new car was a "bad" situation. But what if that first new car had a malfunctioning wire that would have eventually led to it spontaneously exploding while I was driving. Would I then tell myself, "Wow, good thing I had to get rid of that car!" Well, was it a good thing or a bad thing? Neither!

The Venerable Ajan Chah says this,
If your house is flooded or burnt to the ground, whatever the threat to it, let it concern only the house. If there's a flood, don't let it flood your mind. If there's a fire, don't let it burn your heart. Let it be merely the house, that which is outside of you, that is flooded or burned. Now is the time to allow the mind to let go of attachments.
So when you ask me, "How are you?", if I don't tell you I feel like I have the flu, most likely you will hear me say something like this, "I'm good!" I'm good despite my diseases, not because of them. I'm good because when I look out my window I see the most beautiful row of pine trees covered in new fallen snow. I'm good because when I sit out on my deck I feel the healing warmth of the winter sun on my face. I'm good because I am surrounded by a loving family, an amazing husband and the caring hands and hearts of so many friends. I'm good because every single thing I need, I have within me, this very moment. And no fire, no flood, no disease can ever take that away.

I have so much to be thankful for.



abcsofra said...

All I can offer is (((HUGS))). I was so sorry to read about yet another diagnoses. Although my theory on all of this autoimmune stuff is that once you are cooking in the pot, does it really matter what other autoimmune ingredient is thrown in? I so agree with you in that none of this needs to define us. Rather we need to define ourselves and continue to achieve all that we can.

Theresa said...

You are exactly right. I spoke almost those same words to my daughter the other day. Throw another diagnosis in the pot, what changes? Nothing! Even the medications almost all stay the same. We just keep moving!!

Luana said...

Once again you inspire us with your ability to accept what is. Acceptance really is the path to peace and freedom. Resistance and attaching good and bad to what is, causes suffering.

Anonymous said...

I, too, offer you many >HUGS<, Theresa. It's amazing how similar our chronic illness journeys are, even if our diagnoses are a little bit different. Sending you lots of positive, uplifting vibes! (^_^)

Theresa said...

Luana, it took me a long time to "really" accept. I accepted on an intellectual level, but when it came to my emotional health, I held on to that feeling of waving the white flag of defeat. Like accepting meant coming to deal with loss - not realizing the freedom it offered. THIS acceptance came slowly and full of grace.
Kim, YES - we all seem to travel the same road..just in a variety of different vehicles! SO much in common. That's why this whole social networking thing offers so much support. Thank you for being "out there"!!

Anonymous said...

I have Sjogren, it doesn't have me !! And that so true.
I too, want to say I'm OK, even if I'm ill. Because there is not only my illness in my life!

Theresa said...

Jazzcat.....ABSOLUTELY!!! And it's not that we should not be honest and let those who are concerned know how we are feeling. It's simply an attitude - my illness does not define me. That person I hear in my head, the one that has been with me since the beginning of time - THAT person is who I am. This body...well, it's just the skin I'm in at the present moment!

Erin Milliard said...

HI!! I am sorry you have been diagnosed with AS. I have Ank Spon and al I can tell you is I can not even imagine what you are going through. I can barely handle the one disease. My heart goes out to you. Your words seemed to really help me this week. I started a blog a bit ago to try to find a way to help others and deal with daily things. feel free to check it out when you can or have a look for me on facebook. I would love to help if I can. Sometimes it is just good to know someone gets it all. Warm regards Erin Milliard

Elin said...

What a beautiful perspective, Theresa! Love this post.


Theresa said...

Erin, it brings such comfort to know that my words might have made your week just a little bit easier. I peeked in on your blog...simply lovely my dear. Your honesty is bare and beautiful - your spirit shines through. Our best defense against these diseases - against anything in this life really, is to be honest and compassionate first to ourselves. You are WILL be okay!!

Theresa said...

Elin, thank you so much for stopping by! You compliment means a great deal.
This is really what it's all about - being on the journey, and the people we meet along the way.
Thank you again,