SOML

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. :-/

Just to put this out there in the universe, I had no idea someone with sickle cell disease could suffer from pain in the bone marrow. This makes so much sense to me now because I keep telling my doctors I am in pain in my bones and x-rays show nothing. This is definitely something to take to the bank..um or the doctor.

I went in to surgery on Feburary 15, 2012. Although I didn't want to do it, I knew that the issues with my spleen would only get worse. So I showed up, checked in, got into the hospital garb and got poked to death with needles. My husband and I shot the breeze while waiting for me to be wheeled into surgery.  Finally it was time. I was taken down to the surgical floor and the first thing I noticed was it was freezing! I started to panic because I truly did not want to go through another surgery. It wasn't until they transferred to to the surgical table and strapped my legs down that I wanted to bolt. I think the surgical team must have realized how freaked out I was ( I really think my tears gave me away) and they sedated me.  Next thing I know I'm waking up in recovery. I have no idea what they were giving me while I was in recovery, but I felt no pain. It wasn't until I was wheeled to my room that I realized just how much I was hurting.  ...