Tuesday, December 20, 2016

Starting life over with your new normal.

They talk of people starting their lives over. They need a fresh start. Maybe something tragic has happened and they have to pick up the pieces around them and carry on.
But how exactly do they accomplish that? What does it take to look around you, realize some things are simply never going to change and to be okay with that and simply carry on?
I’ve been stuck in a place of wanting to move forward but not knowing how. I am fully aware that my life is not going to be what I planned it to be. I had my goals and I achieved many of them. But then my circumstances changed, my health shattered and since then I’ve been stuck surrounded by those pieces of glass too afraid that if I moved forward I would get hurt. Too afraid that the tiny pieces of glass would get stuck forever if I tried to escape them. What does that even mean? I was stagnant. Totally and completely frozen. Stuck in frustration over the wife that I couldn’t be, the mommy that I struggled to be and the constant longing to be the friend to someone I knew I could be, even if that meant crashing their house just to lay on their couch, but to be there nonetheless.
One day I realized my surroundings, the home I worked so hard to make a peaceful and healing haven, yes those very four walls were closing in on me. I was stuck behind the curtains. It was a wake up, do your best, struggle through the day, rinse and repeat cycle of surviving. Because of the chronic and endless illness I put all my energies into surviving, not living. And just surviving was getting draining, it was getting old.  So how do you start over when you are not sure where you are starting from? How do you start life over, with your new normal, finally accepting that as so? This is something that has been heavy on my mind. As my dark days turned into dark nights, simply surviving was becoming difficult. I had to find a way out of the shattered glass I was surrounded by.
I know I’m not alone. I know you’re out there reading this feeling exactly the same way. 
So what now? Where do we go from here?

Make a plan. Think about what you want in life. I mean really think about it.  You might not be able to do what you did before, so think about what you can do now. Stop living in the past of what you planned, wanted, or thought you should be doing. Start living in the now- taking in what you can do in this moment. Can you get out of your four walls and do even a little bit of what you’ve wanted to? Cause a little bit is better than none and that is something I am trying to come to terms with right now. I thought if I couldn’t engage in my volunteer work on a full time level then the little bit I could do was simply not enough. But the only person it wasn’t enough for was me. The only person in the way of me doing a little bit of what I loved, was me. There will always be laundry, chores, errands, bills, and unfortunately it appears there will always be this chronic illness in this present life. So how can I live a life I love within those circumstances? 

Instead of always comparing my healthy life and my healthy goals to what life is now, I needed to make new goals and plans within my present circumstances. Maybe I can’t be the play-date-every-hour-is-planned-out-with-activities-mom, the full-time volunteer, the shop till you drop girlfriend or the wife that never has to bail on plans for a date with her husband cause she is just too exhausted to function. I had to let those thoughts go once and for all.
Suddenly I realized instead of trying to find a way out of the shattered glass I needed to clean it up. Get out the broom and risk a few pieces getting stuck in my feet cause that is better than being forever stuck. But it wouldn’t be easy, it would be a slow steady process. But one step forward was better than no steps at all.
So with that being said, when you are too tired to even function how do you live a life that is not just surviving? Stop just surviving then. Just do it. Find a way out of the survival mode you’ve created for yourself. 
Yeah, there will still be plenty of days that 
surviving is all we can do. Days the pain is going to hurt so bad we will still look back to the past and long for what was before. That can’t be avoided and that is okay. Sometimes our body will trump our mind, it will demand we go back into survival mode to just get to the next day.
But on the days that life is lighter, enjoy it however possible. Live it, breathe it, take it all in. A cup of coffee, a quick trip to your favorite store, find a way to make friends that will accept you for you and won’t be wanting more than you can give. It might take time for this to happen. It might take a lot of strength on your part. To put yourself out there again, to figure out who you are again, to realize that your maybe not-so-new circumstances may not be going away (for now) so try to grow within them.

Stop hiding your sparkle behind the curtains. 

Let it shine. Let it out.

Monday, December 5, 2016

Hope remains.

There have been times in life when I have felt true disappointment. Over and over again I sought out answers, direction and proof that what I was physically feeling was not a cry for help mentally. Over and over again I was left without answers, without direction and told to seek out a social worker. Even the doctor who was finally able to tell me there was “something auto-immune” going on would  refer to me as "mild" and the disease likely to "go away" despite me telling him how much my life has been affected and how much pain I am in. Maybe he felt his hands were tied. He wasn’t a bad doctor, but I think sometimes doctors get to a point where they feel they can’t go any further with a patient and so they don’t-even-try

Let me start 9 years ago. 9 years this month I felt a flu like pain come over me. I laid on my living room floor trying to find a position in which my body did not hurt. It was impossible. As I envisioned my body being taken over by the flu I thought this is temporary at least. Little did I know that night filled pain was an indication that my life was forever changed.
Doctor after doctor told me they could not find anything wrong with me. I looked good, I was young. “Go live your life. You have palpitations and a high pulse? Must be your hormones- you are a female after all. You have body aches? It must be fibromyalgia. You have stomach pain? Okay, you must have IBS.”

Some doctors went as far as to say to me I have "had WAY too many pointless hospital tests done for my age. Why was I having so many tests done?" Again and again I was told to "Go live my life."  
You see, the thing is, I was trying to. I wasn't asking for tests. I was asking for answers, I was asking for help. Each door I tried was slammed shut. I knew inside there was more to be found. I was determined to find it. But the road to answers was exhausting and wearing on my heart. I started to wonder if I was making it all up. If the pain, weakness and unending exhaustion I was feeling was just normal for this stage in life. But with the help of some very special people I was encouraged to keep searching, keep fighting for answers. But this time go big or go home.

 So I did & was accepted into Johns Hopkins Rheumatology department.  At first it appeared about the same. Same diagnosis. Same treatment. But a million tests to follow. And at first the results of those tests came in the same way too, all relatively "normal". 

Then it was time for the colonoscopy. The Dr said everything looked good. Of course it did,  I said. Why would anything ever back up how I'm feeling. 
Then a day later the biopsies from the colonoscopy were in. 
I pulled up the results on my tablet almost callus like expecting yet again, no answers. When I read the results I felt something inside I think was disbelief. It showed something?  I must be reading this wrong. I read it again. Collagenous colitis. Well there's something new,  a diagnosis I had never even heard of. 

I took this info with me to my next appointment with Hopkins. 
They haven't had a patient with that condition in years,  many years. 
Then came reviewing the blood work which all came in negative,  with one very big exception.  I have unknown,  unidentified auto antibodies. 

Um, what? 

Antibodies against my body that they have not yet given a name.
No one knows what it means. 
This is why no one could give me answers. 
All the years of nasty, cold and jaded doctors went rushing through my head. 
All the times I left long awaited appointments with such a feeling of sheer disappointment suddenly now all made sense. 
Even my doctor from Hopkins who already knew what I had was real and obvious from prior blood work said that for me, this must finally bring me a level of comfort.
Comfort yes. Comfort in knowing what my body was trying to tell me and then me trying to tell the world was right all along. It was not in my head. It was not a cry for help or an attempt for attention. It is all very real. A mystery still, which stings a little bit, but real nonetheless.

Now this leaves us still in a very big bucket of the unknown. 
They're unsure that the collagenous colitis is the total culprit for all my stomach issues, so they've already set me up to have a new highly sensitive 4 day stomach test to be done this month and to maybe meet with their GI specialists who have an special interest in people like me, a mystery. 

And so we wait. Wait for research to catch up with my body. Wait for someone to figure out what these antibodies really mean. But until then, they have talked of a monthly infusion therapy that insurance of course won't want to pay for, but its an option they are prepared to fight for. But at least there is now talk of treatment and an attempt to get me feeling less like I'm surviving the day and more like I'm living it once again. 
And if it doesn't happen, which she strongly thinks insurance will deny, 
my hope still runs deeper and further than what today's medicine can bring.