Yeah I think thats the perfect butterfly shape for me.
This is a temporary tattoo because I wanted to put it on. I've been asked why don't you have a tattoo? First off my mother said it was the sign of the devil imagine this growing up. And then years later she tattoo's her eyebrows. I get bitch about temporary tattoo's of like a flower or a butterfly and when I'm probably in my late teens she gets her eyebrows tattooed. Really. Guess how thrilled I was. I don't know why people would do that but eyebrow trends do change over time. And I don't really care for trends. I just noticed a fat mosquito hovering over me. I hope you get bitched slapped soon. Okay back to what I was trying to say. The butterfly temporary tattoo is what I like. Maybe for my 30th birthday I will get it next year in March. For my 1st tattoo because its symbolizing that I am a warrior fighting everyday struggles. And I am happy with my decision on that. Then get a different one representing my family at another time. I was thinking on the back of my neck as a perfect spot to put it at. Or on my inner wrist who knows I have 6 months to think about it.
Yeah I think thats the perfect butterfly shape for me.
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So I received a letter in the mail the other day. And its from the rheumatology office and its not an appointment document stating I am going to be treated for such and such nope. Its paperwork! I never in my life had paperwork before even entering a doctor's office or specialist to fill out at home. And for once its good because it had at least 10 pages of documentation I had to over look to see what exactly is wrong with me and call your relatives to get their medical history documented to get an idea of exactly what I may have. Okay I have been tested negative for Arthritis, Rheumatoid Arthritis and Diabetes. It has to be something else because someone else in my family has arthritis but I sure as hell don't and I had to kinda argue with my doctor its not arthritis, I don't get the jitters of the I can feel the rain coming no I can smell that before it even starts. So I'm reading and going over this and I'm like wow look at all the medical problems I could have and is listed. And the female section I couldn't even remember when the hell I had my first period. It was that long ago I didn't think it was important as I got older. Oh look I bleed its part of life. Especially when I was screaming in the bathroom telling my mother to come over here and she didn't think it was important as she was watching her novelas (this was before DVRs were invented) until the commercial came. I thought I was dying and then she finally comes in and says oh its just your period. Really? I was bleeding all over the place and you couldn't rush any sooner?! This paperwork goes on and on... list your siblings that are living and or dead, okay then that's a first. Shade the areas that you are affected by. I placed x marks because there were too many areas to shade. I am glad that I got this paperwork not even a month before my scheduled appointment that way it saves me the whole bullshit of fill this paperwork out, unbag all your medication, and enjoy the brain crash. Anybody remember that commercial reference? You should its the this is your brain on drugs. But yes I got to fill out the paperwork which took forever. And other than that crap. I have to deal with a bully that decided to escalate their obsession over my daughter saying if she can't be my friend no one can. Ugh. I don't understand why that little girl is so obsessed with my daughter to the point where she decided to make all the daycare kids turn against my daughter not to be friends and now a new school year has to try to break my daughter's hand. That girl has very jealous issues. Don't worry I work a letter to her parents calling out her their child's bullshit.
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 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. Went to bed probably an hour and a half early. Couldn't sleep ended up having thoughts in my head of my past basically thinking of how my daughter's father (has cerebral palsy don't ask) wanted to cripple me when I was already crippled without me knowing what I know now. How he tried to break my knees so I could be just like him. Without being able to do things on my own and live in pain for the rest of my life when I was already suffering from spinal and muscle pain.
I wanted to scream so much at him just to tell him (excuse me on this) fuck you for trying to break me when I was already broken down mentally for leaving me with a baby to do all the work on my own, couldn't work because I feared if I left my baby with him if I went out and actually got a job so I can be somewhat independent to give my daughter clothing on her back and food instead of depending on WIC, and his soc sec disability and survivor income. Fuck you for leaving me in pain while you went to go play your video games with your online buddies as you were heavily on pot. As I cried suffering lying in bed all alone while my daughter wanted mommy to come play with her, or change her, or feed her. Fuck you for not giving a damn and never coming to my aid when I needed help as I gained 40 pounds during the time I have lived with your sorry ass who wanted nothing more than someone to lay down with and make sure you were fed. I am glad that I left you my life and my daughter's life is so much better without you. Because of this fucking autoimmune disease that I have to suffer for the rest of my life. As I go out earn another dollar to take care of my family while suffering memory loss. I can't spell (while texting) as well as I want to, I can't remember simple things (like watering the plant, giving outdoor cats water, forgetting the clothes are in the dryer, to eat, take my vitamins, or even open the car door to get out). I fear that I might forget memories of my fiance like who he is, what he looks like, how he smells, and touch as I get older by the second. We are 10yrs apart age wise (I'm minus 10) I don't know who will go first to the grave, I know my daughter will be live on and find her own adventures. I can never repay how much kindness he's shown to me and my daughter. I hate being in physical and mental pain and have to just act like everything is okay when its not. The only good memories I have of when we first met playing an xbox 360 game Red Dead Redemption Undead Nightmare OverRun. How it took two years to finally be with him and how we met finally in person when he couldn't keep his eyes off of me as he smiled knowing that I'm finally there with him physically. If we ever fought thankfully I forget about it because of this lovely autoimmune disease. I want nothing more just like everyone else in the planet to be happy, pain free and live a long long life to the age of 70 or above. I'll be lucky if I make it to 60. To the readers I am sorry if it came out a little strong but I just had to vent it out. I can't have this anger holding me back all this time just to tell that asshole fuck you when he will never see it or read it. After leaving my daughter's father. I have went from 180 lbs to 140 lbs now unfortunately back to 160 lbs since living in Texas for one year possibly gained 5-10 lbs before I left Connecticut totalling the 160. The only time I will ever feel thinner is from after using the bathroom in the morning. I've had so much anger built up which probably added towards the weight gain other than poor choices in food. My head hurts so much right now from all this venting hopefully I can get back to sleep before I get to work in the morning. Again I apologize to anyone who doesn't use such language as I have from this vent. Since the winter of 2008 I have been suffering from Lupus without ever knowing about it. I thought it was just the epidural from having my first child. Not including the minor scoliosis from my earlier years of having breast reduction surgery (yes I was that big and majorly harassed for it). I have endured so much pain in my spine and muscle to the point where I had been bound to the bed when I had to take care of my only child when the "biological father" couldn't do a damn thing of helping to take care of her.
So year after year within the four years that I have lived in Dirty Waters part of Connecticut. Every single winter it was the same bed bound, my daughter crying to be fed, changed and put to bed I had to get up and take care of her on my own without the help of her father when I lived with him for two years and left him after I had met my fiance who I currently live with in Texas. That is for another time. Within those last two years I was able to find a job, moved back in with my birth family (they are nuts) save enough money to move out of Connecticut (2013) to find happiness for once, after living in Texas for one year. I was pain free no more chaotic chaos from my daughter's father, my birth family even from my spine. But this part I thought it was normal throughout my life having naps constantly within the week no more than 2 hours a day. Getting lost in the parking lot (yes this does happen and still does), my memory starts to fade throughout the years for example if someone asks me to call them back or say hello to your family for me. My brain doesn't think its important until 2 days later, weeks or months later. Oh my co-worker said hello to you 6 months ago. Within the past 4 months Lupus thought it was okay to invade my space, my life, my daily ruines with unimaginable pain starting with cold air blasting from the air conditioners at work on my right elbow as if it were fracturing. Thank you memory loss for not telling me to go see a doctor saying something is wrong during the two months pain every time I've had to go work just to get another dollar to pay for my child's education, food, clothing and etc. So after the obamacare went through, just in time I've decided to go find a primary care physician through my insurance and when I found one is the same building I take my daughter to. Got the physical done even had 6 blood tube samples taken out of me. Two days after that my whole back locked up I couldn't move this was a few hours right before I had to leave to work. Thankfully my fiance was able to help loosen my back up and half a muscle relaxer I was so not me I couldn't even spell. I had no choice but to take that medication so I wouldn't miss a whole day's pay. After 4 weeks had passed got back to my doctor and she old told me the bad news first your test came back positive for Lupus. Then the good news was no diabetes, no high blood pressure blah blah blah, then lets get back the bad news we need a blood sample to reconfirm your blood test for lupus (total 9 tubes were taken out of me within the month) we will refer you to a rheumatologist (this word is so hard to spell but easy as hell to say) and fax everything over to move on for your treatment. Yeah its been over two weeks waiting for that phone call. The blood test that was given to me is called the ANA (antinuclear antibody) its the most common test that I have read. After hearing about Lupus I did the google search and read about it there really isn't that much help about what it is because it varies so I have read the symptoms: COMMON x joint pain and stiffness with or without swelling x muscle aches, pains or weakness x fever with no known cause (possibly) x feeling very tired x butterfly shaped rash across nose and cheeks (no) x other skin rashes (no) x unusual weight gain or loss (uh yeah) x anemia (only during pregnancy) x trouble thinking, memory problems, confusion x kidney problems with no known cause (no) x chest pain when taking a deep breath x sun or light sensitivity x hair loss (no) x purple or pale fingers or toes from cold or stress Less Common x blood clots x seizures x sores in the mouth or nose (usually painless) x dizzy spells x "seeing things", not able to judge reality x feeling sad x strokes x dry or irritated eyes My color chart: Yes No Definition of Lupus: _ http://www.medicalnewstoday.com/info/lupus/ Guess what my reaction was thinking oh fuck. Before the symptoms yep I'm dying here comes the small water works. Time to set my funeral plans, who invite for my funeral, send a text message to fiancee saying I tested positive for Lupus not AIDS or HIV, Facebook saying I'm technically dying. And a few days after hearing the news of its Lupus I'm all happy thinking I'm not crazy about the unusual spine and skeletal pain. Then telling my daughter she can't have her Disney Frozen birthday party because I have to go see the doctor more, and then she gets all selfish over it. I'm like great you care about your party more than your own mother technically dying. When I use the my phase technically dying I mean that I am going to suffer in pain for the rest of my life that is the dying part. When I use death/die/died I mean by free of pain, suffering hardships etc. So yes I am technically dying just like many others who face Lupus in such a different way I suffer on the inside while others display it on the outside. Thinking back on why I acted the way I acted as in not picking a better father for my daughter, could've had a better education grades, I'm not happy or sad about it I just could care less about it and move on learning and adapting how to control what I can move on now with knowing that I actually have been fucked up since birth basically not knowing about Lupus until that doctor's follow up appointment. I know its going to be difficult in the long wrong the least I can do is try to get help as much as I can to extend my lifespan a lot longer than what the so called full life is mentioned in the learning about Lupus. |
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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, |