I Have Your Back

There is something that is important for everyone to realize in their life, but especially for those of us suffering from chronic illness: You cannot make everyone happy, you cannot please everyone in your life, all you can do is have the strength to get up each morning and breathe in and out, and do the best you can, and hope it is enough for the people in your life.

When you are sick, it is often times a day to day struggle just to be alive, let alone to be in charge of making others happy and satisfied. 

If you are lucky enough in your life to have people who understand this concept, and who can selflessly put their own needs aside temporarily while you are fighting for your survival, DO NOT TAKE THEM FOR GRANTED. 

Lyme and its other host of co-infections often feels like an anchor that is constantly trying to sink down to the bottom of the ocean with you helplessly attached.  You fight to catch a breath of fresh air every day before sinking back down below the surface of the water. 

You are in the fight of your life, and you cannot always expend the strength and energy to try to free others from their chains, when you yourself are imprisoned. 

Sometimes the people you love and who are surrounding you during treatment become human punching bags, absorbing our anger and sadness.  If they love you, they will not falter, and will continue to be an outlet for your frustrations, for they recognize it is temporary and it is not personal.

If you are blessed and fortunate enough to have people in your life who love you unconditionally, even through your brain fog, irritability, snappiness, and moments of complete despair and heartbreak, never let them go for they are almost impossible to find.

Love yourself first.  Take care of your own needs.  The only upside to being sick is allowing yourself to be a bit selfish.  Indulge yourself in whatever small pleasures you can still enjoy. Find happiness in the smallest of things and treasure those moments.

Lyme changes you to your core afterwhich you will never be the same, and you definitely are a different person while you are fighting the disease.  This does not, however, mean the changes will be for the worse.

The people in your life who love you and would do anything for you will never put you down or make you feel badly for your behavior, attitude, words, or actions while you are sick.

 They will understand your need to be somewhat selfish, somewhat self indulgent, and sometimes utterly devastated and depressed, and will steadfastly support you, like the roots support the tree, like the trunk supports the branches, and like the stems support the leaves

They will not leave you or abandon you, and await the day you regain your health just as you do.

I know some of you have lost loved ones due to the storm of emotions and conflict often times stirred up by Lyme Disease, and it is devastating and hurtful. 

I know that some of you feel abandoned and deserted by people who promised to be with you for better and for worse and through sickness and in health. 

I know that it sometimes feels hopeless and like you are lost in a black cave, with no sign of light. 

This is why it is important for us to stay together as a community and to support each other and love one another.  Nobody understands what it's like to be chronically ill unless they are unfortunate enough to suffer the same fate.  The relationships lost due to Lyme can be mourned, but remember there are thousands more friendships and relationships to be made with people you have never met that know exactly how you feel and always "have your back". 

Breath and Water

Tonight the house is quiet.  I hear the quiet and rythmical sounds of my dogs all breathing, all four of them in an odd harmonious and musical pattern.

 The peaceful trickling sound of the filter in my fish tank almost mimics the sound of the rain pouring off the gutters in a light storm.

Night is the hardest time for me, physically and mentally.  The strain of daily activities, such as walking my dogs and working for one hour, really sets in at night, like a thick fog settling thickly into a deep valley.

 The joint pain, nerve firing, and brain fog seep in slowly and I feel it coming on, a blanket slowly falling down to smother a kindling ember.

I was looking through my college photos tonight.  Pictures of me when Aleve still worked, when I could just mentally block out the pain, when I had my life.

 Hopes and dreams and happiness are held in those photographs.  They are images of a time when I was truly content for the only time in my life. 

I know I have plenty of things in my life "to be thankful for" and "to live for".  These are expressions I hear a lot.  I just can't help but sometimes think about the life I was leading before I got sick and before my world turned upside down.

Not a day, hour, minute, or second goes by that I don't miss working livestock, that I don't miss learning, that I don't miss feeding my brain like oxygen fuels a fire. 

Not a day, hour, minute, or second goes by that I don't miss San Luis Obispo and the magic that only those of us who have lived there know that place holds, and will forever hold. 

I try to be strong, and in fact I have people telling me that on a daily basis.  That they would never know how sick I am, I have such a tough demeanor, I always look "so pretty"...Sometimes I feel like saying to them, well I own makeup and a hair straightener....that's the trick.

Most of the time I feel like a piece of limestone: I look like a solid rock, but if you touch it in just the right place, the entire structure crumbles to small insignificant pieces of sand. 

I know tonight is just a tough night, a lonely evening, and tomorrow will be a new and hopefully brighter day, but sometimes it's important to recognize your own sadness and depression. 

Tomorrow I will be okay, and I will go about my day and do my best to look happy and stay strong, but tonight in the quiet of my house, listening to my dogs, the fish tank, I let the hot tears fall down my cheeks, and I mourn the days when I was healthy and happy, the sun seemed to always shine, and my hopes and dreams were reality.

Emergency Room Visit...Again

For those of you that know me, you know I have an incredibly high pain tolerance. I will even give myself credit for my ability to compartmentalize my physical pain in order to seek out any normalcy I can find in what is left of my life...

Unfortunately, last night I hit a breaking point. My joint and nerve pain was so severe, my body was uncontrollably shaking. My resting heart rate climbed over 100 BPM, and my fever shot up to 103.

I tried to take a luke warm bath with some "calming bath salts" (what a joke that product name is). After about 20 minutes in the bathtub, nothing had improved. As I climbed out of the tub I became extremely dizzy and ended up vomiting all of my dinner I had consumed about 45 minutes prior.

As I sat soaking wet dripping both water and tears all over the cold bathroom floor, uncontrollably shaking and crying, I just had it...I couldn't take it anymore.

I've only been on these new antibiotics for a week, yet that week feels like an eternity; a blur of mind numbing pain and suffering.

Like I said, I just couldn't bear the pain for one more minute. Each second felt like forever. I am taking Lyrica, Tramadol, Vimovo, and more Vicoden than anyone should probably take, and found NO relief, no solace, no temporary comfort.

I just needed help...so I went to the Emergency Room.

The doctor was an ASSHOLE. Pardon my language, but there is no better way to describe the self righteous egotistical man that walked into my room. When I told him what I am afflicted with, his response was "Did you recently travel to Africa"?

His comment was delivered with a snide smirk, a nasty evil looking squint of his eyes that reeked of mockery and disbelief.

I looked so pathetic there...I was dwarfed by the oversized hospital bed they had put me in, shaking uncontrollably, eyes swollen and red with tears, head hung low like a sick or injured animal...And all I could say was "No." I had no strength to fight back with a powerful remark...I was already feeling beaten and broken.

He questioned my diagnoses, questioned my legitimacy as a patient, and questioned my reasons for being in the ER. He then said to me, "Well I can't fix your problems in the ER on a Friday night in Savannah, GA"...

I am still shocked at the lack of compassion, lack of understanding and empathy in some of the doctors I have encountered here in the Southern United States. It is moments like the one I had last night that make me question my faith in the medical community.

Their job is to help their patients and to LISTEN to their complaints and BELIEVE that they are real...not to bombard a young woman, obviously in a lot of pain, with disbelief and rude comments.

I ended up using my education (thank you Cal Poly Animal Science) and explained in scientific jargon my diseases, clinical presentations, my bloodwork results and titer levels and ranges, treatments, diagnoses, etc...and he finally seemed to at least believe that I was truly ill..

They ultra-sounded my gall bladder and it was reviewed by the surgeon. My bloodwork and ultrasound came back inconclusive, however I am going in for a specialized scan as soon as possible to take another look. My clinical symptoms do suggest a failure in gall bladder function. I will know more later.

I was sent home with some Percaset and a giant chip on my shoulder.

The worst thing about this disease is the disgust the general medical community has towards those of us who are inflicted with it.

It feels like saying you have Lyme Disease is like saying you have Leprosy.....Only those of us who have seen that "look" on the doctors' faces understand what I am saying...

It makes you feel like nothing, like you are alone with your illness, completely isolated from the rest of society...It is heartbreaking.

Although last night was horrible and upsetting, it does make me feel that much more thankful to have a doctor who is taking care of me and who BELIEVES me and has found out what diseases I have and has a plan to treat them, even if he is 3,000 miles away.

When it comes to your health, you HAVE to be your own advocate...Nobody will fight for you as strongly as you will, so you have to fight for the care you deserve.

I will continue to push forward, to be unrelentless in this journey to reclaim my life. These moments of adversity will be the ladders that one day lead to greatness.

I am just holding onto hope...the hope that one day those of us with "hidden" diseases will no longer be discriminated against...

Hope that there will be a CURE.

Hope that I will be able to have my life back.

Hope that I will be able to survive this and come out the other side stronger instead of broken and shattered.

Sometimes in this world that is all we have to hold onto...A glimmer of hope in a sea of black dark swells and waves. A quick flash of light in the middle of a storm...A shining star that burns through the dark ominous clouds of doubt and depression...

But at least it is something...Hope is everything when you feel like you have nothing...