Need a few minutes to laugh or just go aww here ya go!
This is Riley and he's having an unhappy day. Need a few minutes to laugh or just go aww here ya go!
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Take a Lead for Better Lupus Treatments!
Learn how at NYC’s first Lupus Trials Fair Clinical Trials for Better Treatments Today and a Cure Tomorrow August 5, 2014 Take a Lead for Better Lupus Treatments! Learn how at NYC’s first Lupus Trials Fair: Find out how you can help bring lupus closer to a cure by taking part in clinical research. Join the Lupus Research Institute and the S.L.E. Lupus Foundation at the first Lupus Trials Fair September 13 from 10:00 – 2:00 p.m. at the Roosevelt Hotel in Manhattan.
Columbia University Medical Center The Feinstein Institute for Medical Research North Shore-LIJ Health System Hospital for Special Surgery Montefiore Medical Center NYU Langone Medical Center The Rockefeller University Talk with representatives from leading research centers currently recruiting for lupus studies; take a lead for better lupus treatment. This free event includes light refreshments. Register online or register by phone at 212-685-4118. RSVP by Friday, Sept. 5 http://lupusresearchinstitute.org/lupus-news/2014/08/05/take-lead-better-lupus-treatments-learn-how-nyc%E2%80%99s-first-lupus-trials-fair Click here >_ It just had to start up again after two months as of May and June 2014 my right elbow acts fractured towards the air conditioner that happened to be blasted more in my department (I work in the baby section) than any of the other sections of the store. Why haven't I bitched about it sooner? Because it just started getting hotter in Texas again in the month of March/April and the hotter it got the higher the air conditioner got kicked up a notch. And only working 20 hours a week along with waiting for the Obama Care process to get through just to have health insurance because the 'United States' demands all Americans to have health insurance. Some say it was crap and I'm happy that I have a good health insurance to help with all the needs that I need more now currently. And I got carried away as usual. So yeah after having 6 tubes for "my physical", 2 tubes for my female physical, and 1 to reconfirm my Lupus. The 6 tubes two days after I have had that done I was crippled me hours before I had to go into work that was fun and half a muscle relaxer. Imagine my day at work and thankfully it wasn't busy. The 9th tube I couldn't pump blood anymore. Now that my blood has "returned" by producing more blood to keep me going. I don't feel the same I seriously don't my blood cells and everything else are attacking each other which is making my whole body which is making me hurt more than that I ever want. Fish oil is supposed to help with the inflammation but it could only help so much.
As for the waiting game I finally got a referral to see a rheumatologist (I almost had that spelled correctly thankfully google fixed it) and they were planning to see me in November I'm like uh no it has to be sooner. So I am going to start my treatment for lupus on October. And I have no idea how I am going to the new medications that they will prescribe for me but hopefully it'll help. So I am waiting for the bus after I had to make an appointment for my daughter's doctor just to get a note to apply sunscreen on her while she is at school. And I am waiting and waiting as the ice cream melts in this lovely Texan weather and I noticed a fellow female stranger sitting in the hot sun and I invited her over to the shaded area so she wouldn't have as much trouble staying in sun when we're waiting at least 10 minutes for the bus. So we're talking and talking and I noticed she had a scar in the middle of her chest. She was talking about being more patient with time, transportation and etc.
And I told her I have semi-lost my patience since moving to Texas because of all the crazy drivers especially during the Christmas season. I mentioned I have to be more patient with Lupus and the funny thing is that she has it as well except hers was more different it was more with her organs reacting. So she was telling me how she had problems with her body making her vomit so many times and that when she went to the doctor they didn't want to test her for anything else thinking its just a minor type of surgery for gallbladder removal. They were going to wait until she reached a fever to test her for Lupus. Let me tell you why this is dangerous. if you have Lupus and your fever gets over 100*F you can die it is fatal and I'm surprised she hasn't sued whoever the hell took care of her and didn't treat her as quickly as they should've. Omfg I would've raised hell if they ever did that shit to me. If they tell you oh its fine don't worry about it. Uh yeah don't trust that get a second opinion to get some kind of valid answer but yes she has been going to the hospital week after week just to make sure her body is working functionally along with making sure she takes care of her kids as well. But yes she seemed very nice and I hope she gets the treatment that she needs asap. It was nice to meet someone that actually understands what Lupus is. And on my way home since all the schools basically released all the kids and it was horrible traffic just to get home in my portable shopping cart that I can take with me shopping. I walked with it I "carefully" dropped it down and guess what the wheel did. The back left wheel bent inward and I'm like fuck! I had to fix it very quickly and wobbled it all the way home. I am not happy about that I'm cheap and I paid $20 for that thing. :) This song makes me happy when I'm walking to work. If you don't like the song title think of it as Live or Die Trying by giving up. If you have not heard this song yet. It is a very pretty song and what I have perceived it as a song for survival your own survival of coming out from the bad and rising out from the ashes to be reborn. Video is at the bottom after the lyrics I wanted to give you the chance to read it first then hear it. I hope you enjoyed it as much as I have. Lyrics: "Beautiful Pain" (feat. Sia) [Intro: Eminem and Sia] I can feel the heat rising Everything is on fire Today's a painful reminder of why We can only get brighter The further you put it behind ya And right now I'm on the inside Looking out, cause [Hook: Sia] I'm standing in the flames And it's a beautiful kind of pain Setting fire to yesterday Find a light, find a light, find a light Standing in the flames And it's a beautiful kind of pain Setting fire to yesterday Find a light, find a light, find a light [Verse 1:] Yesterday was the tornado warning, today is like the morning after Your world is torn in half. You wake and let's wait to start the morning process Rebuilding and you're still a work in progress. Today is a whole new chapter, it's like an enormous ass. The thunderstorm has passed ya. Your weather didn't poke his eyes out with the thorn bush that you used to smell the roses. Stopped to inhale, can't even tell your nose is stuffed. So focused on the bright side. Then you floor the gas pedal and hit the corner fast, The more asserted, never looking back, may hit the curb, But everyday is a new learning curve as you steer through life. Sometimes you might not wanna swerve but you have to to avert a disaster. Lucky, no permanent damage, 'Cause they hurt you so bad. It's like they murdered your ass and threw dirt on your casket, But you returned from the ashes. And that hurt that you have, you just converted to gasoline, And while you're burning the past, standing at inferno and chant [Hook: Sia] [Verse 2:] So familiarize what having to swallow this pill is like It happens all the time, they take your heart and steal your life And it's as though you feel you've died because you've been killed inside But yet you're still alive which means you will survive Although today you may weep because you're weak and Everything seems so bleek and hopeless The light that you're seeking, it begins to seep in That's the only thing keeping you from leaping off the motherfreaking deep end And I'm pulling for you to push through this feeling And with a little time that should do the healing And by tomorrow you may even feel so good that you're willing To forgive them even after all that shit you been put through. This feeling of resilience is building. And the flames are burning quick as fire would through this building you're sealed in But you're fireproof, and flame retardant you withstood it. And as you climb up to the roof you're just chillin' and you look down 'Cause you're so over them you could put the heel of your foot through the ceiling. As time passes, things change everyday But wounds, wounds heal But scars still remain the same But tomorrow today's gone down in flames Throw the match, set the past up ablaze So feel the fire beneath your feet As you barely even perspire from the heat Exhale deep and breathe a sigh of relief And as you say goodbye to the grief It's like watching the walls melt in your prison cell But you've extinguished this living hell Still a little piece of you dies, you scream [Hook: Sia] [Sia:] I feel the burn, watch the smoke as I turn rising, A phoenix from the flames I have learned, from fighting fights, that weren't mine Not with fists, but with wings that I will fly [Hook: Sia] http://www.azlyrics.com/lyrics/eminem/beautifulpain.html So everyone that has Lupus gets the flare effect. It varies each day it starts from when you get up until you go to bed. And it just gets better and better to the point where you can't even move for 10 minutes until your body decides that its ready to move. Gotta get up and move just to take the female medication, multivitamins and fish oil that is supposed to wake you up and control the inflammation the whole lets detangle your limbs and spine from all this mess. It hurts to move from my experience. This is what my body goes through every time I get up in the morning if I don't get enough sleep as in a full nights rest my whole spine locks up it takes me probably 10 minutes for my body to warm up (basically I can not be in the cold) just so I can move. Lately my arms like in the interior part of the elbow not the actual skeletal part, the muscle and nerves not only sends shocks but also inflammation. I can not unbend my arms when this happens the only thing I can do is just go outside for a few minutes for my body to send a signal to my brain saying," Hello time to hit the reset button!" Gotta love the fatigues no matter what I do my body feels constantly tired either from home or work I have to eat constantly small portions throughout the day just to get moving. A full meal does and doesn't help eat probably every 2-2.5 hrs to have at least something in my system. The left and right clavicle ugh. Just stab me why don't you. I haven't had many problems with the lower part of my body such as my legs, ankle and feet. Only my pelvis motrin slightly works but this is not a menstrual cramp type of cramp more like let me stab you with needles to keep you on the couch or an non domestic animal just bit the shit out of me. Seriously just take it and use it as a frisbie why don't ya?!
And this is it from what I am experiencing so far. I can't been seen yet until October to start my treatment. Hopefully something will work to calm down majority of my "illness symptoms". Oh winter is gonna suck so much for me. Added: 8/25/14 original post 8/22/14
Okay I sorta lied on not sure if I felt pain in my legs or feet. Yeah my brain lied to me. *Pffft* I think its trying to cripple me. Since moving from Connecticut and getting a new phone number to make it a Texas number. The phone number that was given to me had a previous owner called Marcos for probably about one year since having this number I have received text messages from a place called EZLoan (pawn shop), Walmart to pick up or a reminder for his diabetic medication, a text from I think it was his father that was looking for him, his co-workers saying don't come into work tomorrow, friends asking if he wanted to hang out, merry christmas and now this. Here is a small insight of my conversation with one of his friends. Enjoy. THE END! So probably a few days later I have sent a message saying hello. And yeah she never talked to me later. I hope you enjoyed it as much as I have. ^_^
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About this Dragonfly WarriorMy name is Miriam and I have chronic illness that is invisible to others. My autoimmune disease is called Mixed Connective Tissue Disease (MCTD) and I have Fibromyalgia. This is my page of my journey of how I am progressing. We are the warriors of the butterfly under this mask, |