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The SickleCell Diva

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~The SickleCellDiva~

Another trip to Urgent Care!

Since Christmas has ended I have been running around like crazy to get the house back in order, kids ready to go back to school from Xmas break, dealing with some major car issues, young adults & teenagers SMDH, and enjoying the entertianing company of my one year old grandson….Damn! Thats a lot.

As I was sitting in the dealership at 10am Monday morning sharp, with all my documents needed to get a new car, I realized they had the damn air conditioner on blowing at full force. Now I rarely leave my house with out my second layer of skin (those who know me knows that is my bike riding wear under my clothes) and its very thick. But that cold was creeping through my jeans and turtle neck sweater.

So I get up and go walk around outside pretending to look at all the cars I dont want and try to get some sun on me but the wind was blowing and it was not hot. I could feel the pain starting to kick in strong…in my right knee!!

By the time the finance manger was ready for me to sign papers I was already chewing on my second vicodin and limping over to their cases of free water. And by the time he was telling me to sign here and there and over there it all was a blur and I just wanted to get home and in the bed.

But that wasnt going to happen becuase my 18yr old daughter was home sick from way too much partying and needed fresh lemons for tea. So I not only stopped on the way home for lemons I also stopped to pick her up some TomYumGoon (Hot & Sour Soup)
Well to make a long story short, I fought the pain until I just could not take it anymore and the following morning I got up and took myself to Kaiser and 5hrs later, 2 doses of moriphine, oxygen, and IV fluids….I’m back at home cooking dinner, doing laundry and working on my spreedsheets for next months bills…it was just another trip to Urgent Care~

~Break-Through Pain

There has been many, many nights and days I lay in my bed in pain, walked through Wal-Mart in pain (chewing on a vicodin or two) to get groceries for my kids, got in my car to go pay bills…in pain….parent meetings at their schools in a full blown crisis!! Many days in my past has been filled with some sort of sickle cell pain.

Some of these episodes was manageable, I dealt with the pain, doctored on it myself, and sometimes just down right over looked it while I handled my day’s events. With even a burst of energy usually happening right before the pain sets in. Now anyone that has sickle cell knows there are different levels of sickle cell pain, and there is a point of , Ok…I can tolerate this it’s not so bad….

However there are times (many) when it reaches a level of, “Make it stop now” I can’t take another minute of this!!PLEASE just make it stop!!… That level there is, “Break-Through Pain”. When the pain becomes intense, so intense, sound, light, movement, even conversation all makes it  worst. And with in minutes the pain is everywhere, and 100 times worst than it was 20 minutes ago. Many of Us in the world of Sickle Cell Anemia knows this, “Break-Through Pain”…all too well.

Over the past year of 2011 I’ve had one episode of serious, “Break-Through Pain”….I had to get to emergency, get fluids, oxygen, pain meds and a unit of blood. However this was something that use to be every three months for me. There was a time when I felt, “Break-Through” pain I was at Urgent care getting checked in to receive blood regularly.

I try real hard to avoid those days now, and even though they are not completely avoidable I do try to change my mind, body, and soul when those days show up. When pain starts and I’m at home….most of the time I can control it and work through it now. I don’t allow it to elevate or control me. I begin to control it starting from within. I pretty much shut everything down and focus on the area that is having the damaged cells get stuck. And I start to drink increasingly amounts of water. I began to take the amount of meds that will allow me to tolerate and deal with the pain,  I apply heat in rotations and I control my breathing and I limit my movement & talking, tv goes off, Ipod with relaxing music goes in the ears and I begin to  place my body in a relaxing state.

This has helped over the past year and I know now what it feels like to have the Break-Through pain slowly back up and turn away. In the past I was moving so fast with husbands, work, kids I never slowed down long enough to understand or even listen to what my body was doing or saying. It defiantly has taken sometime to get to this point. And since my  pain threshold is on a large-scale I always waited too late to catch that final moment that, “Break-Through Pain” would show up and last for days on end.

Now when I see it, hear it, and feel it coming I softly and gently let it know…”Not today Break-Through Pain”….I’m not letting you in.~

Losing Track of Time~

For most people going about their day, “Time management” is imperative. Although many try to hold on and mange their time wisely…time will always be the one thing that’s out of control for many….

However in the world of sickle cell, “Time” is not the same for Us. The moment that nurse hits that corner with that long shiny needle full of whatever drug that will stop your pain…it is a matter of seconds, “Time” will stop for Us, as we feel our body slip away into the state of numbness, as we feel our body start to float and become relaxed after so many minutes, hours, days, of tensing up, and dealing with horrific pain and discomfort, tears, trembles, shakes,agony,and much.. much crying….Time kinda stands still and then vanishes like a shooting star in the far, far, distance holding hands with the pain.

Until my eyes opens hours, maybe even a day or night later or when the pain strikes again in the middle of a slumber sleep, time will become this thick fog of a Alice in Wonderland type adventure~ From different size, shape nurses, and various hospital staff, to family members visiting on days I don’t recal, to nights interrupted by strange-looking and sometimes weird smelling lab techs needing to draw your blood while you just slipped into a deep medical induced sleep with and sometimes without sever sickle cell pain.

By the time the pain has completely stopped, and the crises is completely over….Days have passed by, school events has come and gone, outfits my children worn, meals my family ate, even pay-days and bills needing to be paid has vanished all to be re-paid the following month.

This, “time lose” usually are days for me and in the past it has been even weeks. With all this said, “Time” is so very precious to me and I take it very seriously. Since throughout my life from a young child to adult it is something I have lost on a regular basis and wanted back so very badly….. yet never got the chance to get to know~

Copyright © 2011

~Elevated Liver Enzymes

Taking so many medications ( well some of Us with sickle cell do—- others are fortunate not to need as much) But for those of us that take several doses of pain medication on a regular basis it is so important to be aware of your Liver function. What does it do, and just how well is it working. If you have been suffering from sickle cell your entire life and is approaching your 40′s its important to have the “Enzymes” in your liver checked if it has not been done so already.  Ok what are Enzymes?? Well do your research http://en.wikipedia.org/wiki/Enzyme  if the levels in your liver are too high it’s not a good thing!

I watch what I eat, drink, and how much pain meds flow through out my body. Its my body and I Love every inch of it so for all those sickle cell soldiers marching on, do what you gotta do and keep your body strong! For more information on “How to Lower Elevated Liver Enzymes” follow this link((Especially if you take Vicodin or frequent use of acetaminophen, brand-name Tylenol, and NSAIDs such as ibuprofen  and aspirin for pain))—>>http://www.livestrong.com/article/339897-how-to-lower-elevated-liver-enzymes/

~SickelCellDiva~

Copyright © 2011

 

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