Diva’s Divine Art’s

 

Well I havent blogged in awhile because sickle cell is “Not” my entire world!And…. Due to the fact I have “Seven’ kids and one grandson I need  some form of outlet …something to relax and get away. With encouragement and inspiration from a few close friends and family I’ve decided to re-visit a childhood hooby and pastime….”Art”!! And I must say I have been having an amazing time.

It all started out with a deep desire to give each of my children a piece of Me to take with them into the world as they get older but instead it has turned into a past time I look forward to each and everyday now and with my Michael’s coupons & .59cent paints ….”Sickle Cell” has been the furthest from my mind the past month.

So with this said here are a few samples of my work! Enjoy~

Reconstruction of Sickle Cell

Over the past ten years I have been noticing the process, the events, and basically the physical, mental, and emotional ( and might as well throw financial in there) effects each sickle cell crisis has on me. In the past, missing days from school, and work I was always playing catch-up with my studies and bills. Missing days from work had me in the human resource office back in the day trying to explain what exactly this blood disorder was, why I was missing so many days from work and trying to get sick or vaction pay (That was prior to me going on disability which I’ve been on since 1996)

This difficult time period after a crisis and before another started (which sometimes was not very long in between)….I call it the, “Sickle Cell Reconstruction”.

Sometimes this reconstruction period can result in an extend period of depression, sadness, bitterness, anxiety, anger….while at the same time a sense of relief that its over and the focus of pain and only pain was temporarily gone.

After a bad sickle cell crisis I have realized I am constantly, “rebuilding”! I’m rebuilding my mind, my body and my spirits. I think its been about five years now that during this period I have learned to let go and allow this reconstruction period and process to take place smoother. For years I was so angry and bitter which would cause me to go right back into another crisis. I’ve learned to let it take its course, be becoming thankful for each day God Bless Me with and except the down time I was faced with. In the past I was always in a hurry to play catch-up with things, money, events and throwing my body back into another crisis.

And even though the episodes are extremely painful and some recover periods are difficult, I’ve learned to allow the reconstruction to take place instead of fighting it or making it worst….. I don’t let doctors control it, I don’t let the pain control it, I dont let sadness control it….. I let the building blocks of my mind and body take its course…OK this has not been easy to do!! Not with kids, relationships, bills , jobs,  a household to run and life to live, but it is a regular process I’ve learned to deal with and accept.

It’s taken time but I have learn to  supply my body with, “Herbs, fluids, healthy eating, rest, and positive reinforcements” and the reconstruction process takes place.

Bengay Review~

A few weeks ago Bengay contacted me and asked if I would do a review on their products…of course I said YES!! Now in order for me to really use the product I had to wait for some serious pain to show up ….and it did!! Most recently in my leg which caused me to head to urgent care.
Anyone with sickle cell knows that moist heat works best for those of us with joint pain, so the “Cold Therapy” Menthol Pain Relieving Gel was not a good fit for me, however my twelve year old loves it!! His foot and ankle’s has been hurting him for the past few weeks due to P.E. and playing soccer on the weekends and he loves the Cold Therapy one.
Now the other one, “Bengay pain relief + massage”…that one got kinda warm and helped with mild pain, but I do like the massage applicator that is attached to it. I used that applicator with their “Ultra Strength” Bengay which I already keep supply of.

I’m not a fan of the Cold therapy and Pain Relief + massage applicator, but I do like the heating feeling the Ultra strength gives out when I’m in pain~

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 som 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~

Hello 2012~

TheSickleCellDiva.com website is up and running~ It’s a new Year ((2012)) and I got loads of things to talk about. So thank you for stopping by my virtual journey and visiting,…Sharing knowlege on how I live my life with Sickle Cell Anemaia to all that is interested and seeking knowledge. God Bless, Happy New Year, and subcribe to my blog to keep up with all my latest sickle  cell  journeys in life~

~SickleCellDiva~

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~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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~Don’t Get Upset!!!

The Other day I was in my normal late afternoon mode…laptop to the side, remote control in hand, tall spagetti jar full of ice, water and a splash of mango juice and a few almonds on my notepad in front of me which I’ve been munching on while taking notes (yes I take notes all day long..brain just wont shut down)

As I’m flicking through channels and websites, I can hear my boys (14,12,& 9) in the back room. At first it was a low sound of play but within seconds it sound like a full on wrestling match going on, so I got up walked around the corner to their room and stood where they could not see me. And yes it was a full on take down, knock down play match going on. Now the rules in the house is no wrestling take it to the back yard but its sooooo cold they not really up to going out there. So I stood in front of the door way and said (calm but firm), “Hey!! You guys know the rules stop the rough playing before someone gets hurt! They all  chimed in, “Ok Mom…Sorry”, and I went back to my spot on my bed.

I dont think it was even 15 mins later and the same noise came rolling around the upstairs hallway again. Now everytime I yell from the location of my room, I can feel my heart, my blood, my lungs all tense up and if I’m really going off I am shortly out of breath, Now if I get to the point anger sets in along with the yelling there is no question about it I will start feeling some kind of sickle cell pain.

So the bottom line is….” DONT GET UPSET” …Stay calm,and control the breathing…When I do this I can feel my blood slowing down and pain not as intense. I can feel my heart rate going back to its orginal pace. Ok this is not easy but I have become pretty good at getting my mind, body, and breathing in check when things get crazy~ And I have to say this has come in handy when pain has began to set in!!

Copyright ©  2011

Lack of Sleep in the world of Sickle Cell~

After having sickle cell crisis on a regular basis, over the years I have found getting to sleep a challenge. After getting several strong doses of medication during a crisis, my body is completely out of whack! From eating, going to the bathroom, to moving around, and falling asleep. Sleep is extremely hard to come by after a crisis, when night~time arrives like some shiny black limo to drive me off into the wonderful world of sleep, the damn thing pulls off before I can step in and get comfortable.
This has happen so many times it has become the norm. There are nights, many that I have watched the sun come up without one ounce of sleep.

Here are a few side effects from not getting any sleep….

Serious Sleep Deprivation Side Effects

  • 1. Stress, and being easily irritated are very common traits of someone who is suffering from long-term sleep loss. They will be easily angered and have a hard time keeping a cool attitude.
  • 2. A weakened immune system is something that you will not want to have. This means that you will have a MUCH easier time catching colds, the flu virus and any other type of common disease. It can also increase your chances of catching something that is life threatening.
  • 3. Cognitive functioning will also be impaired as well. Having a hard time thinking, moving and just using the brain in general will be much slower than someone who sleeps well at night.
  • 4. You can expect your reactions to not be up to par and even sluggish. Try playing a video game that requires quick reactions and you will see exactly what I mean.

And  at one point in my life I have experienced each and every one of these! I can completely side with the Micheal Jackson…just wanting to sleep like your kids, in a sound slumber sleep~ Peaceful and natural. Well …for ME, it takes a good two months after a crisis to just about get all the meds completely flushed out my body when a hard crisis hits. So for 6 to 8 long weeks I am up most of the night trying not to take anything so my body can get back on track. Its very hard, difficult, sometimes I don’t make it and “Ambien” here I come! (Which is just as difficult to get to sleep without)…It’s a never-ending rollercoaster.

I remember someone told me, Oh go walking or do something physical a few hours before you go to bed…LMFAO!! I looked at them like they lost their minds. By the time I’ve missed a few nights of sleep my body has no energy to do anything and one ,”overexertion”-Anything will throw my body into a violent sickle cell crisis.

Over the years I’ve attempted Yoga, Meditation, Reading, all late at night and have not been very succesful. So far there has been one online virtual game (secondlife.com….I’ve been there since 2006) that has caught my attention, helps me to relax and take my mind off sleep, sickle cell, and kids. So for now that is the place I venture to when sleep is playing hide & seek from me, but I still don’t fall asleep til almost 2,3 sometimes 4am….Yes! This is Lack of Sleep in the world of Sickle Cell~

Copyright ©  2011