SOML

Death. It really is true that it comes like a thief in the night. One minute everything is status quo, and the next, your whole life is turned upside down. The loss I feel at the death of my grandmother is incomparable. Through this sickle journey that I have been on, she had been an avid cheerleader in my successes and solid counsel in times of failure. I'd call my grandma and we'd talk and laugh for hours. She taught me so much about love and sacrifice. You see, grandma came to look after my sisters and I when my mother was stationed in Korea. I remember our afternoon walks to school and the feeling of community. As we aged, grandma stayed in Colorado and was very rooted. She worshipped at church, met up with friends for lunch and remained wholly independent despite never driving, nor expressing any desire to learn how to drive. But she missed her hometown of Baltimore, MD. So grandma left us in Colorado and took another journey across the country in 2009.  Even thoug...

Each time that I have a procedure or operation in which I have to go under general anesthesia I write a letter to my friends and loved ones.  I make sure that I get in contact with everyone who means something to me. I make sure that I make amends.  Because I am currently averaging a surgery a year, this is a good way to keep the slate clean. It gives you perspective on what you have to do in this life, where your life is headed, what's important, what and who is NOT. I have to reset my priorities to make sure they align with where my life is headed. Do I have to let some people go? Yes. Do I have to be honest with myself? Absolutely. Do I know that unexpected things can happen and there is nothing you can do about it no matter how hard you try to mitigate disaster? Yup. 2017 Sucked. I entered the year full of hope and possibility like all years previous. I knew that I needed a hip replacement. I signed up for it since the pain in my right hip was excruciating. I rea...

So far I've had such a craptastic and yet enlightening year. One minute I'm walking through life, doing my usual routine. Absolutely nothing is out of the ordinary. I realized I may not be 100% happy at that point in time, but I believe happiness is achievable. After all it's just a state of mind right? And then the unimaginable happens. Something that I thought was impossible is possible and I then had to flip my life upside down to try to figure out how to make the pieces fit. But nothing fits and nothing makes sense. Now these pieces are damaged, almost to the point of being destroyed, because of trying to force them to make sense.  What is the point in trying to achieve something that will always be just beyond reach?  Sometimes for the benefit of me, I have to let go of you. 

Let's talk about avascular necrosis (AVN). Truly it's a technical term that just means bone death and I have been experiencing this. Who knows if it's the altitude of living in Colorado that is exaggerating the phenomenon!? Ultimately, many people with Sickle Cell Disease experience this in their bones and is usually commonplace in their joints, such as shoulders or hips. In my case, my hips were the first discovered.  I have always complained about pain in my bones, especially my legs. My hip pain has been very extreme since the birth of my son almost four years ago. And for the longest time my primary doctors didn't understand my complaint until my hematologist ordered MRIs in 2012 and they showed the AVN. The pain had become so bad it was hard to function and I opted for a core decompression (where they drill into the bone to help reduce the pressure) and bone graft (cadaver bone and minerals) to be put in. I don't view surgery as a walk in the park and I know ...

I see from my blogger dashboard that I have many people that view my blog from all over the world. Please feel free to comment and let me know if I'm sharing something that you have gone through, or if you'd like to me touch on a certain subject. As always, thanks for reading.

%*(&    @#(*   *&^%$   #$%#@  @#$^&   #$*! Followed by: Sweet Jesus! Lord help me! Oh God! If I'm lucky, I have pain medication available. I can avoid the emergency room. Then hopefully I will have mild relief, the tears will dry. I'm so worn down from hours to days and weeks of constant pain that then blows up and saps all of my energy.  This is my life.  Try keeping up with a 2 year old with all of this. Or functioning at all! It's a wonder I finished my Masters or have accomplished anything. This is just not cool. 

I have not posted in quite sometime. The truth is, it's hard to get care in this state for sickle cell. I often am tired, along with some sadness because I am in pain. The pain is primarily in my joints like my knees, hips, elbows. The pain I hate the most is in my hands and fingers, along with swelling it is very annoying. I've tried to do some low impact exercising and find that the elliptical still causes some pain but not as much as the treadmill. Swimming is the easiest by far. But none of this matters in the long run, I don't think. I still don't get the care that I need and medical professionals still don't get that having a close to normal hemoglobin count does not mean I don't have other problems. :-/