What Makes you Vulnerable, makes you beautiful ~Brene Brown

Happy November everyone.

 

I am still having horrible pain in my spine. I feel so helpless when the pain gets to a point that I just can’t deal with. Again, I am really hating this pain pump. It  is NOT for me!  Since my last post I have gone back in twice to have the pump turned up. So that makes 6 appointments since new meds were put in pump last month. This shit is getting old, real QUICK!

I find it hard to function some days with this pain.  I just want to lay in bed and scream. I keep praying that some day I will wake up and the pain will be gone,but I know it is only going to get worse.

Then I read about the “opiod crisis” and what the government is planning on doing and I just sit here on the edge of my bed and shake my head. Just like anything else, laws ONLY affect LAW ABIDING citizens.  I do not understand how people who do not have chronic illness can make decisions for those of us touched by chronic illness/pain.

 

To those who are judging us with chronic pain and or putting us in the same category of addicts….

Do you know what it is like to wake up all hours of the night in so much pain that you wish to die? In the morning do you awake with  so much pain and stiffness that you have to lay in bed for awhile before attempting to get ready for the day? Do you know what its like for your health to affect your entire life? Jobs? Relationships? And now you want to take away the only thing that helps many of us have a semi life? You know there is a difference between between addicts and Chronic pain sufferers.  Addicts are chasing a “high,” Chronic pain sufferers do not get the same  “high” feeling, they get RELIEF.  Why don’t you spend some time with some of us who have a chronic illness, so you can see first hand how important our medications are to us. How they ARE a necessity.  We REALLY do need them to survive, to have some kind of life. If i didn’t have a pain pump and breakthrough meds, my life would be a 100 times worse. My life would definitely not be worth living.

 

The pain that many of us live with is SEVERE. We have already accepted  that we will NEVER be out of pain but we deserve to have a happy medium. While you are looking up statistics, why don’t you look up suicides due to Chronic Pain not being managed properly.  In the future all I see is more suicides and more chronic pain patients running to the streets for any kind of relief from the pain.  I was asked a while back if I could have one super power what would it be? The power I would choose is the one that allows me to touch others and make them feel my pain. I guarantee you would be shocked at how much pain I feel ON pain meds, My  “normal.”

 

 

LIFE

We made it to the 49er/Ram game!

Even though my team lost, the awesome seats made up for it! It just felt good to be out and about. Lately getting out of the house has been a luxury. RA and EDS robs me of so much life. So I feel extremely blessed to have made it to Santa Clara for the weekend!

 

We also went to the Winchester House for the Midnight Candlelit tour.

Then on October 30th I went to the Lone Mountain Cemetery walk.

 

These past week, I haven’t done much but go to doctor appts. I have more blood tests this coming Monday and I hope to have the results by the following Friday. These blood tests will show if my disease has been progressing off of chemo and biologics.  If it has progressed a lot, I will have to make a decision on whether I want Quantity or Quality. I didn’t choose this life, it chose me.

 

FINAL THOUGHTS

 

I don’t know about all of you, but I feel so overwhelmed with everything my disease is doing to me lately.  I am so tired of all the different ways it affects my life. Day after day, I have to tell myself, “one more day.” I keep telling myself just one more day, tomorrow will be better when I know its complete bullshit. I know that tomorrow will be about the same. The same horrible pain will wake me up and I will sit there and scream in silence. The same 4 walls  will continue to be my prison, unless I am lucky enough to push myself to go to work. The thoughts that consume my mind,  I know I will spend part of the day fighting off. All of the “regular life” stuff will continue to fall to the wayside because most days the only energy I have is spent on doing basic things like bathing.

Tomorrow I know I will have to decide on how bad the pain is and if it is worth taking a breakthrough pain med. Just in case you didn’t know we only get an allotted amount every 30 days, so I have to decide how much pain I am willing to take on a daily basis.

This is my life now, this is my life with chronic illness/pain. Some days are easier than others, some days are awful and I just want the whole world to go away.  Some days, I am so tired of feeling like I am drowning and everyone else is too busy LIVING life to stop and lend me a hand. I am tired of feeling weak and vulnerable.  I am tired of being SICK and in constant PAIN. I get so tired of no one understanding. I get so tired of believing in others only to watch them fail me in one way or another. Tired of all the medications the doctors shove down our throat. Tired of fighting a battle I know I can’t win.

Then there are days that I feel like I CAN breathe. Days that I almost like my life. Days I can feel the sun kiss my skin. Days that give me hope. Days where I feel stronger than my disease. Days that make me feel alive.   Either way I never know how my day will be till i open my eyes in the morning.

I guess my point to all of this is that we just have to take every day as it comes. We have to keep pushing through the shit days to enjoy the joyous ones. For me that means some days I have to take it second by second.   We  didn’t have a choice to be sick, but we definitely have a choice on how we let it affect our lives. Hang in there spoonies…. XOXO