The little things....

Ok lately my life has changed drastically for a 28 yr old. I am going to let you all get a little insight of what I cannot do anymore and how my days are now. They are complete opposite of my working days and doing whatever that's for sure. The point of this particular blog is make you stop and realize what you have. I wish I appreciated these little things before as much as I do now on my "good" days. I cannot stress enough how important health and life is..how precious it simply is and hold on to it..cherish it please! Here goes I will start from head to my toes... Head..my memory sucks, my attention span is horrible, I have what they call "lupus fog" which is brain fog..I go in a daze basically. I have the horrible migraines, my left eyes almost blind, my eyesight sucks where everything is a haze and I'm not even high! Basically my vision is like when you put on bifocals and driving in the rain haha ok that's really not funny but it is. I have nosebleeds all the time due to sjogrens and no moisture. My mouth ughhh... I have thrush all the time, I get mouth sores, I have dry mouth, I get sore throats all the time, my teeth are falling out all from sjogrens! Heart..I have irregular heartbeats, my heart is enlarged and not in a good lovey way! When I lay down my heart beats like the pace of a train or if I just got done working out same as when I wake up. Scary yes! When I breathe it feels like it takes all of my energy almost th feeling of when you're sick and all congested well I'm like that all the time. Breathtaking! Haha Stomach..the meds make me.....well gas-y haha! So that's quite annoying but hey can't hold it in or you will explode haha :) Arms..they are bruised left and right from all the infusions they are weak from all the needle pricking. I mean I go to the dr 3-4x a wk and get stuck every time. I'm a pin cushion! A bruised one at that! Hands..I cannot write or type anymore with out my hands shaking uncontrollably or cramping up. So if I cannot write it is also hard to cook,hold objects, polish my nails, put on make up,hard to drive from holding steering wheel my hand cramps up so I have to pull over, talking on the phone,holding anything for a while basically...either my hands cramp up,shake, or I drop it..I drop glasses of drink all the time. My hand just gives out. Woman parts..lacking sensation hey it's the name of the dirty disease game :( I'm here to educate and inform. Plus I cannot have anymore children..getting tubes tied at a young age..blah ya get it.. Legs...they swell up, the joints hurt like someone is putting screws in my knees and ankles, my thighs burns like I just did leg exercises. I fall all the time! I have to get a cane at the ripe age of 28!! Just like my hands give out my legs just give out. I just collapse like my legs say lets sit down but my minds like let's go walk over here. I call myself Fiona from Shrek when I swell up..I mean it's some pancake ankles, knees,and feet action! Walking up stairs feels like I have heavy weights wrapped around my ankles I literally have to lift up my leg with my hands and move them to the next step..so I hate my parents house haha. I wanted a suv so badly for aiden but now I hate getting into it bc it's so hard to climb in. It's all a work out! Feet..they cramp up and swell up through out the night.. Things I cannot do... I cannot go to grocery store or any store for more than 1 hr before I swell up or my legs give out and get heavy like I have casts of cement wrapped around them. I cannot take a shower without falling, crying, or needing help. Basically when I am home alone which is the usual I have my 2 1/2 yr old son help me wash my legs and feet and help hold my hand to get out the shower. Yes I said I have my son help me. I have trouble taking and putting on my clothes one part from being so swollen and another from the joint pain and muscle pain. My body is so sore. I cannot wash clothes, fold them, and put them away ( well no one really does rt haha) but I get wore out from doing that vacuuming, mopping,cleaning, giving aiden a bath or the dog a bath that's like running a mile for me. Going down the driveway to check the mail I have fallen before..taking aiden to park I have to cut it short or take breaks I can't just play with my kid. I can't go out and have a drink or party or socialize without getting fatigued or feeling dazed. I cannot take my dog on a walk with out knowing for sure I can make it back safely. I can't be around sick ppl young old cute or not stay away I'm too weak already.your little cough you say isn't contagious and is just sinuses makes me have the flu basically and every other infection possible. I can't eat a lot of foods that everyone else enjoys on a daily basis. Eating out I cannot do as much do to them adding salt or other seasoning that I cannot have. So while you eat a delicious steak with potatoes and a dessert I can't have any of that! No salt no red meats no potatoes no sugars! No processed no packaged foods no snacks no candy no caffeine no alcohol no no no no! When I do "splurge" it's when I really feel I can handle the outcome. The outcome is swelling, pain, and fatigue..so I feel like poo all for a piece of cake or for a sip of sweet tea. Where before its like eat whatever drink whatever enjoy whatever. Party whenever. I cannot sleep at night. I wake up at 4 am every morning. I wake up 3x through the night to just pee..and when I pee it's like off of Austin powers its forever ! My kidneys are so messed up! I've gained so much weight from meds which makes me depressed a little. The swelling and weight gain makes me weaker I have noticed. The sad part is...I eat healthy I mean I juice,eat veggies, chicken,and turkey only, no caffeine, no salt, no sugars, etc and I try and walk the 30min a day they say I need why do I feel like I just ran a from the cops while eating 5 burgers?! So all in all my body is weak..it's a swollen, joint aching, muscle burning, cramping, collapsible,achey,tender, hurting infected body! Enjoy yours and treat yours with care! Yea you may be healthy and able to party all night and day and drink your sorrows away or do drugs and feel fine and drink cokes and caffeinated drinks and eat burgers like no ones business but stop and realize you are hurting your precious body regardless of you don't have a disease or illness. I never imagined I would be falling all over the place or not able to do certain things or go certain places and have certain foods especially not in my late 20's but look at me! Oh and I "look" healthy and happy that's the other bad part people see me and say wow you look great and your are all happy go lucky. Honestly..it's a front to get me through the day or that moment. I really just want to go home and sleep and ignore the world. My everyday consists of waking up at 2 am,4am to pee then at 6 am then i take my meds, then I'm up play on computer check all my emails and what not. Go over my calendar some don't forget anything like I always do. Then I clean the house make a smoothie take a cold shower to make swelling go down. Make breakfast for aiden lay down and wait until 830 to wake him up. But if it's infusion day I get dressed and go to drs to get treatment until 10:30am. Then aiden eats, we do a little schooling, and then play around. Then I get really exhausted around 11am everyday no matter what. I usually doze off in a daze while he plays around with Chris or whatever. Then Chris leaves for work I wake up and back to mommy duty. I feed him lunch and try to get him down for nap by 1230-130 so I can try and snap back out of fog..then when he sleeps I try and clean clothes or rest as much as possible. Then when he wakes up we go somewhere and I usually swell up and have to come back home to rest again. Or I meet with my family do they can have them while I relax. Then dinner bath reading a movie bed more meds and more relaxing. My days are BORING! I miss work so badly! I love cooking I love entertaining I love making others happy I love being active...so this life sucks bc it's not me at all! I'm used to having two jobs and staying busy me sleeping all the time bc I have to force myself to calm my butt down or else I will end up back in the hospital is annoying but it's what I have to do to take care of myself. Thanks for reading and once again enjoy your freedom health and life ;)