SOML

%*(&    @#(*   *&^%$   #$%#@  @#$^&   #$*! 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.  ...

To My Friends, I love you all for sticking by me and supporting me when I didn't feel like I could make it. It's so crazy because I can now walk and sit up and pick up baby with very little pain compared to before. God is awesome! You guys are awesome! I'm asking that you guys pray for me as another part of the saga unfolds; I am having surgery on Wednesday. I know I blogged about how big my spleen is (as big as a football when it should be about the size of a fist) and it has continued to grow despite the pregnancy, along with its increased blood flow, being over.  It is causing me excruciating pain! Despite being on pain meds and resting when I can (and when baby lets me) I can't deal. I have been subject to quite a few tests and blood work lately to determine the size and damage that the spleen has caused. There is good news, cat scans show that there is no internal bleeding and that despite being at such a high altitude there is no infarction (parts of my splee...

On December 4th I went into another Sickle Cell crisis, the worst of my life. My husband had just gotten off of work and I was trying to wait until my OB appointment that afternoon. I could not believe the pain. I thought I had some weird form of sciatica which caused me to be unable to walk but by Wednesday, my mother-in-law had come home from lunch and found me sobbing and delirious from the pain and demanded I go to the hospital or she was calling 911.  My husband had just pulled up and I somehow made it to the car with the help from him and his dad.  I never even thought this pain was related to sickle cell but all my lab work came back verifying I was having a crisis and my blood pressure and heart rate were so high they told me that if continuous morphine did not work I'd be delivering my baby the next day.  I did not sleep, I literally couldn't move because of the pain, my husband had automatically brought our bags, but I figured we wouldn't need them and with ...

If you are keeping count, 32 weeks has come and gone and now I am being told to hang on until at least 34 weeks. Considering that I am in significantly less pain now since the blood transfusion, I believe I can do it physically. But mentally I have hit a block a few weeks back where all I did was cry over the guilt of wanting little man out and being exhausted from the amount of things that are happening during this pregnancy. I am so hard on myself but I find solace in the fact that I have handled this situation with understanding and determination; what mother wouldn't? I tell myself "one day at a time" or as on Finding Nemo "just keep swimming" and rely on close friends and family for that extra boost of support. I am holding out and taking it as easy as I can but as some symptoms and pain decrease, others ramp up their efforts which are a normal part of pregnancy. I have a list of complaints but I will save it for those unsuspecting sympathetic ears. --Yes,...