My Lupus Log
This is one of the easiest apps out there to use if you want or need to keep track of how well you are doing.
My Lupus Log
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Twitter has told my mother on me that I have a page. And she followed me. I am not thrilled about it.
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, |